Son's hand flapping, jumping, head shaking

by Ally
(Florida)

My son is 3 and a half years old. He was diagnosed with Autism at 20 months, but the diagnosis has since been removed. He is very social, great at imaginative play, and joint attention that evolved a few months later, so not autistic.


They did say he has some autistic tendencies but does not meet the criteria for autism or PDD. He has flapped his hands when excited, or watching a moving object (fan, wheels, water running) since he was very young. It has now evolved into hand flapping, head shaking, eyes closed, facial grimacing, and he points his toes and clicks his heels together all at the same time. It appears to be involuntary, however you can stop him at anytime by calling his name or touching him. It's like his whole body is affected.

Oh, and when he is excited, and standing up, he bounces like Tigger all over the place. He has been seen by two OT and they gave treatment for some minor fine motor delays but I need help in addressing the obvious need for sensory input.

If he isn't autistic, can SPD cause him to act this way? In July we took him to a Pediatric Neurologist that said he just needs to learn to not do it, and he is a normal child with autistic tendencies... Help please!! Thanks so much

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Sep 07, 2016
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Hand flapping
by: Anonymous

I am a therapist and had the honor of working with a young man who, when first seen, was diagnosed with autism at the age of 2, exhibiting many of the symptoms that are classic, including being non-verbal and "self-stimming".

Over time, most of his symptoms disappeared, except for hand flapping (when he was high school age) when he would wait for his appointment in our waiting room. He would immediately stop if someone came in the room.

He has been able to self-control his hand flapping and has recently graduated from college with a Bachelor of Science degree.

Jul 02, 2016
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3,old makes faces while crossing his eyes
by: Anonymous

Hi Ally, my son does everything you have described! What was the outcome for you?

May 23, 2016
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For 12 year old hitting
by: Anonymous

12 year old hitting:

It sounds like TS. My daughter was diagnosed with TS. Now she has the diagnosis of Autisim, with stereotypic movement, and tics. I joined Tourette's Syndrome Association when we thought it was TS & there is such great support. There are videos and stories of others going through what you are. People really listened and help me with what I was going through with my daughter.

May 22, 2016
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My 12 Yrs old is hitting involuntarily
by: Anonymous

My son start making uncontrolled movements while walking, also hitting his computer and iPad until he broke them. He made dents in the wall all around him because he is hitting then with whatever is in his hands (ex: cell phone, cup..).
We tried all kind of medications. They all had negative effect such as introducing vocal tics and swearing. He is not able to go to school due to movements and loud voices. A doctor diagnosed him with TS. We are not sure if this is the right one as it came all of the sudden at age 10 after we moved from CA to MI.
NON of the medications worked.

Any one has a solution for this? It is killing us as a family

Apr 01, 2016
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Still waiting on diagnosis
by: Anonymous

My nephew has had an initial diagnosis of dyspraxia. He is 9 years old, very intelligent but has very little social skills. He suffers from melt downs as everything is the end of the world!! He refuses to use a knife and fork and will only eat certain foods and if they aren't cooked exactly as he likes them it is another melt down. He has no empathy and quite a temper. He spends at least 2 hours a day twiddling a piece of string in his fingers while bouncing up and down making a moaning noise. He also has a routine that cannot be broken without more melt downs. I feel like this is more than dyspraxia,

Jan 13, 2016
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My son is the same
by: Anonymous

Hi I have a very inteligent 4.5 year old , he is loving very social and has an amazing memory , he has been able to go to the cinema and concentrate on a whole film easily from the age of two!! However he is constantly bouncing and flapping his arms all day long especially when he gets excited , they seems to be no problems with his learning but he difinately seems to be hyper active but with no detriment other than school expects them to sit still while learning and he would rather be moving , not sure if I should be concerned Ashe is a very happy healthy boy who has lots of friends, school seems to be making more of an issue of it !

Oct 26, 2015
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Brian S
by: Anonymous

Thank you for asking Brian!
We went to UCLA, and she is in Autism Spectrum, has stereotypic movement, and has anxiety. They recommended that she does cognitive therapy for anxiety, have a therapist work with her at home with the stereotypic movement, and take a peers class that was started by someone at UCLA, that will help her in social situations. UCLA was great! I paid out of pocket for her to get a diagnosis, as hers is complicated. We weren't getting anywhere through our health care provider.

I put her in a new school, and it is a lot more supportive than her previous school, and school district.

I am going to now see if we can get some of these therapy's covered through our insurance. I am on track now, and feel better to have resources, and support to help her!

Oct 26, 2015
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to Susan
by: Brian S

Hi Susan, just checking in to see how things went with your daughter, if a diagnosis was given, if help has been provided through your county, and she's doing in school.

Oct 13, 2015
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This sounds like CMS
by: Anonymous

My SPD son also has CMS (Complex Motor Stereotypies) and has had since he was very young. It's benign, and often a sign of an extreamly well developed imagination. The CMS Facebook page was useful to help understand because there are several adults with CMS that post their experiences. The Johns Hopkins site has a great explanation of this issue. ( http://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/pediatric-neurology/conditions/motor-stereotypies/ )

Honestly, it looks a bit odd, but it's harmless. Adults seems to have more issues with it than kids.

Oct 13, 2015
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calling on Dr. Roger D. Freeman, MD
by: Anonymous

Dr. Roger D. Freeman, MD would you please send me a link to your study? You mentioned your book, has that been published yet? my email:

pirrotta.sarah@gmail.com


Oct 05, 2015
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Why isn't it ASD?
by: Anonymous

What is the difference between Sterotyoic movement disorder and autism spectrum disorder?

My son hasn't received a diagnosis either but he flaps, has ADHD symptoms like hyperactive/poor fine motor skills/disorganized/struggles in school but great at minecraft and plays imagination in full action on the front lawn pretending he's in the NFL or NHL. He's very social and loves his friends. Is also very strong and won't put up with bullying. And is very blunt and speaks without a filter often. He takes things far, I'm afraid he could harm his older brother one day. What is this???

Oct 04, 2015
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this reminds me of some guy that i knew from school
by: Anonymous

hi,

i am a retired special ed teacher and i have a childhood friend who is a yr older than me i think and he has ASD and he flaps his hands and puts his hands in the pants everywhere he goes. he also has self injurious behavior where he bites his hands. we told him to stop and he would have not. he is 24 now. i feel bad for your son, let's get it straight, have u tried OT therapy?

Jul 23, 2015
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Brian S
by: Susan

Brian,

Thank you for your comment. It is all so true.
I took her to UCLA and we are waiting for diagnosis. With my daughter almost 12, she hasn't outgrown her stereotypic movement, and it's more intense. It makes it difficult to fit in with middle school. We will get the best diagnosis possible and go from there. Her school administration was not helpful last year on giving her the support she needed. We are getting this diagnosis to help give her the knowledge and support she needs. then just keep moving forward with it.

Jun 09, 2015
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Jumping up and down
by: darush

My daughter has been diagnosed with adhd since she was four years old. She does the same thing jumping up and down like tigger. I pointed this out to the developmental pediatrician but he said that it is not autistic behavior, that she will grow out of it. Her Occupational therapists, said that I had to remind her to not do it.

May 20, 2015
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11yr by Susan
by: Brian S

Susan, we understand your frustrations. I've been on this board for 2yrs, and while my daughter is only 5,she has diagnosed, undiagnosed,and rediagnosed with autism, social pragmatic disorder, adhd-i, quirkiness, speech delay due to bilingual upbringing, and the list goes on. And this is coming from reputable doctors and clinics in my state. Sounfs like your daughter has sensory issues, along with social. If there's a language communication issue, then you have the 3 required impairments for autism. You hit the nail on the head when you said your reading has made you more knowledgeable than most. Beleive me, sometimes i think parents know more than the "experts". We're living this 24/7, researching, reading, running trial and errors. Most clinics are assembly line...checkup, diagnose, next.

Keep reading, keep researching, keep fighting. No one will for your daughter. My daughter, with her rediagnosed autism is 1 in 68 in the doctor's eyes, but she's 1 in 1 in mine.

May 19, 2015
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11 year old
by: susan

My daughter is 11 years old. She flaps her hands and makes a face. She has always done this. Played with her dolls and toys by shaking them. She does not have behavioral problems, but has trouble connecting with other kids her age. Academics in school are good. I am lost... We were finally told she had Tourette's & it totally fit. Felt good to finally know. I joined TSA, and read up. Then by reading and meeting another child her age with Tourette's, I felt it might not be. I thought maybe it was stereotypic, by her movements. The motor skills difficulty, and OCD's, and anxiey all fit with Tourette's. She even has developed verbal squeaks along with the hand flapping. Noises, so it seemed like verbal tics (maybe is). I went for a 2nd opinion with another neurologist at Kaiser, and she said yes, stereotypic. No other information to connect the dots. We went to UCLA for tourette's, tic, anxiety, OCD's disorder research for diagnosis. She has OCD, anxiety, but the hands flapping is sensory, and they felt she has autism. We haven't had her tested yet. One of the doctors at Kaiser said she is unsure, because even though she has trouble connecting, she can sometimes have eye contact and feel empathy. I am so lost,and by my reading I have more information than some of the doctors I have seen. It has gotten more intense with middle school and the social anxiety. I am going to try to save up and take her to UCLA for a diagnosis, so hopefully I can know how to help her. I feel like she needs support, as well as me.



Mar 26, 2015
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Sharing a similar experience to many of you
by: Lelose

I'm relieved tonight as I read through many of your posts about your experiences. It's frustrating, confusing and as parents, I think many of us would agree that we can't feel like we can be the best parents possible if we are dealing with some concerns that are not clarified to help us understand so we can be our best and help our little ones be their best as we guide them on their journey. I know there are many Facebook groups with large member numbers, but I have started a group on Facebook in hopes of creating a smaller network of parents who are experiencing many of the symptoms and experiences detailed in the comments on this subject of hand flapping, etc. Please come and join me in a small network where we can talk about our experience and vent if we need to. It will not be a place to rip on anyone, but a place where we can be open minded and not feel like we are going through this alone. Hope to see you there! Please select the link below.

https://www.facebook.com/groups/1023839347646111/

Mar 03, 2015
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Rumors of Autism
by: Anonymous

All right, it's out of the box, but here it goes. They are waking up. They are trying to speak with their hands because in their previous lives they were angels and are trying to wake up and alert the world of the evolutionary change that is about to take place. Some will think this is crazy, it's okay. But perhaps some enlightened parents that were blessed with these angels might upon seeing what they are doing with a different perspective perhaps will be able to understand what they are attempting to communicate they are traveling between dimensions. They were born to you for a reason. People who do not see the same things as others believe they are "crazy" but that doesn't mean they are not seeing what they are seeing, and that what they are seeing is real at some level. I don't understand how many people say they believe in angels but...not really.

Jan 30, 2015
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to anonymous
by: Anonymous

Sounds like my daughter's pediatrician...associated with KKI, didn't diagnose my ddaughter with anything after 2yrs of well visits. After much concern from me and my wife, we had her evalauted. Long story short, we're still on the road for a proper diagnosis after almost 3yrs. The pediatrician never saw any symptoms..unreal

Jan 30, 2015
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stereotypic movement
by: Anonymous

I just thought my own experiences might help some of you who are confused w/ stereotypic movement disorder. my son is almost 11. At under 18 mo, he would flap his arms, run back and forth and hum. He also picked at his belly button. His behavioral pediatrician who is also associated w/ hopkins and highly credentialed DXd it as Tourettes at 5. I disagreed and still do. The behavior never has changed/morphed. He's doing it less now at 10 (esp the flapping/running - he belly picks more now because he has figured out how to hide it successfully). I sent Dr. freeman a video several years ago who also felt it was most likely stereotypic and not tourettes. his older sister is also a severe nail biter. He's doing really well - he also has some processing disorders that nag him at school. However, he's doing much better than I would have dreamed when he was small :)

Jan 28, 2015
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mrs
by: Anonymous

My son is 2 in may and he also hand flapping and head nodding and has been diagnosed with motor stereotypes and global development an speech and language delays. I feel your pain I hate watching my baby like this he's having more genetics done in march cos he has abnormal chromosomes x

Jan 27, 2015
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it's in the comments
by: Anonymous

This is what her post said, "Had to have him paddled at school for him to stop because I was afraid he would get ran over or kidnapped. Once paddled not again" It is not the original post or poster, it is in a comments. Honestly, it makes me sick to my stomach that a parent would allow their child to be "paddled" by anyone. Dear God, it's sickening.

Jan 27, 2015
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I am confused
by: Anonymous

Where is everyone reading that this child is being paddled in school ? I actually went back re-read the question numerous times thinking that maybe, just maybe I missed something. I do not see ANYTHING in this question regarding paddling in school . In fact school isn't even mentioned. Please help, sometimes I think I may be getting older and my mind is not working properly anymore.

Jan 25, 2015
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get help
by: Anonymous

Where do you live where they would paddle a child in school!!? He cannot help this and should never be paddled. You need to be strong and stand up for him to your parents and work with the school so he can be helped. He is just a little boy. Please work with your doctor, county, school district to educate yourself and your family. Find some support groups to meet other parents of children with ADD. Take a break from your parents if you need to. Your job is to love and support him whoever he is. Get some help from someone who understands...not your parents. good luck, you can do this!

Jan 25, 2015
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Stop hitting him!!!!!!!!!!!!!!!!
by: Anonymous

Uh, STOP having him hit with a paddle!!!!! Stop hitting him period! See someone to help you find ways NOT TO HIT YOUR CHILD.

Jan 25, 2015
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going through the same things
by: Anonymous

My son is 8 and has been "flapping" his arms in front of the TV or computer for years. Always thought he would grow out of it but nope. Struggled with the school since he has been in it. Wandered out into the parking lot one afternoon when he was in KG, come to find out he had done this multiple times. Had to have him paddled at school for him to stop because I was afraid he would get ran over or kidnapped. Once paddled not again. Then it was the bullying, and his inability to concentrate and get his work done, his horrible handwriting, and seemed to be one thing after another. He stayed sick so he missed a horrible amount of school because of his asthma/allergies. His PCP diagnosed him with ADD and gave him Concerta. Now my 74 year old parents are giving me grief about giving a "normal" child with nothing wrong with him medicine and he must have bad nerves. There "must" be something going on at home because he is fine when he is with them. I can't handle much more before I have a nervous breakdown myself. My son still is getting behind in school and is on the verge of failing the 3rd grad. Any advise would be greatly appreciated and taken into consideration.

Oct 06, 2014
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Dominik
by: Anonymous

I have high levels of copper as well, which explains some of my own health problems. We believe that the high levels I have could have been passed down to our children through me, however, I believe we may have copper in our water or it is coming from our old pipes. We are working to lower the levels and our naturopath believes that will help to diminish my children's symptoms.

As for copper attracting ghosts....I can't say I've seen any lately, or ever. :)

Oct 06, 2014
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Increased copper levels
by: Dominik F

To Anonymous, I remember hearing someone talk about how people with autism naturaly have higher levels of copper in their body...of course that person also said it attracted ghosts but I'm not quite sure about that part.

Oct 05, 2014
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copper toxicity
by: Anonymous

I have had concerns for both of my children for several years. One stims and has mild asperger's type symptoms. The other child has several tics. I took them to a Naturopathic doctor who ran some tests and they both have very high copper levels in their bodies. She said that could definitely cause their symptoms. Has anyone else looked into heavy metal toxicity with their children?

Oct 05, 2014
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replying to anonymous
by: Brian S

If I'm lost in thought, and my wife says "you ok?", I don't develop a self esteem issue. When my daughter starts stimming, and I'm trying to talk to her, and she's lost in her world, I don't say "what's wrong with you", or "snap out of it". I'm cognizant of her issues, and as a loving father I simply ask "are you ok?" She can easily respond "yes" but her choice of words is "sorry". The point I'm trying to make is that she's somewhat aware of what she does, and we're trying to get a better understanding so that we can help her. And because she's behind/delayed in social and expressive language, identifying what and why becomes much more difficult. Lastly, if you read my post, my daughter does more than just hand flap. I have friends that hand flapped when little and now they don't. If hand flapping was her only issue I wouldn't be on this site. And she doesn't hand flap.

Oct 04, 2014
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reply
by: Anonymous

Dominik, thanks for sharing your story! It's really nice to hear!

To Brian S., How sad that your daughter feels the need to repetitively say, "sorry" because she flaps her hands. The damage to her self-esteem for being made to feel ashamed of doing something that comes so naturally to her sounds like way more of a problem long-term than the fact that she flaps her hands and may or may not have a communication disorder.

Oct 04, 2014
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Proud to be Autistic
by: Dominik F

I have recently read a lot of the posts listed here and I feel the need to join in. I can understand what your kids are going through because I have High Functioning Autism, ADHD, a little bit of motor Teuretz (I probably didn't spell that right), and a little bit of OCD. I didn't start talking until I was about three or four years old. I also did the hand flapping, moving head from side to side, jumping up and down, and being hyper in general. My mom raised me and my brother after our father passed away. She taught me that when people call me weird to take it as a compliment. I am 19 now and I attend Salt Lake Community College, work for a good company with good pay, and I am on disability. My point is that even though your kids may jump up and down and down when they are excited doesn't mean that they can't live normal lives because everyone has their little quirks that make them who they are.

Oct 04, 2014
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Facial grimacing and hand flapping
by: Anonymous

My daughter flaps her hands while facial grimacing. It almost looks as though she is in pain. The kids in school make fun of her and she cries and tells me she wants to be normal. She has ADHD and is on a mild medicine for that but it does not temper her movements. Where do I go from here? She is 7. Will she grow out of this? I am concerned she will become depressed and withdraw? Help please.

Jul 16, 2014
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your story seems very similar to my own with my son
by: kayleigh

Reading your story seemed like reading somethinv I wrote myself about my son only 3 yrs ago today things have becone a lil better but he still has abnormal movements suffers from developmental delay and is baffling health professions and tbh im starting to have lil faith in ever finding out whatever it is thats wrong with him as so far in the last 3 yrs experts seem no closer to any kind of diagnosis or even any suggestions as to what it may be, if u dont mind and could email me personally on kayleighwaterfield05@gmail.com I would be very interested in speaking with u in more detail on this matter as I until today have never heard of another child experiencing anything so close as to what my lil boy does

Jun 30, 2014
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great story "30yr old hands"
by: Brian S

That was a great feel good story. Unfortunately for my daughter and for us, we can't figure out what her triggers are for stimming (stress, tired, excited, etc) because it seems to happen whenever it feels like it. Countless of drs and clinicians have labeled her from mild autism to sensory issues to now Social Pragmatic Communication Disorder. They've said everything from calling her "quirky" to having possible ADHD. As you might assume, I've lost faith in "experts". All I know is that something makes my daughter run back and forth looking down or straight into the sky, makes her tap her fingers together or her 1 hand, makes sway her head from side to side, but as soon as we say something to her, she says "sorry", stops, then 75% of the time will go right back to doing it. Is it voluntary, involuntary, triggered or not triggered, who knows...and ni one knows. Is this affecting her social skills, or does she truly have social pragmatic issues?

Jun 30, 2014
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30 year old MD flap his hands?
by: Anonymous

I was at a ball game last night and I saw a 10 year old boy flap his hands like my son did since he was a few years old. I felt the difficulty the parents may be going through. I decided after all these years to look on line and I ran into this site and I was surprised to see all the posts. My son is 30 years old now. He still does some of the old habits and I know he enjoys it when he is in that mode. Of course he does not do it in open. Maybe when taking shower by just pretending that he is washing his hair. His speech was later than other kids of similar age. He would flap his hands when he was excited. Sometime cross his eyes. Likes to float on water. Not good hand eye coordination and terrible in team sports. Great in individual stuff like running or biking. Generally shy and had problem looking you in the eye. exceptionally smart. Read news papers cover to cover. unbelievable memory. Did great always in class. Too much stress from everything he was reading and seeing in news lead to OCD when he was 10. We started with a pills and therapy, but realized what we had to do is to remove sources of stress since he knew too much and therefore worried too much . newspaper and TV news reduced. No more Goosebumps books. stopped the medicine (Paxil). OCD symptoms went away after a few years. He later overcame his shyness by doing speech and debate and mock trail in Jr high and high school. Graduated with highest SAT and went to the best university and Med school. Now doing his residency. We always stressed his strength and saw the hand flapping, ... as something unique about him. He never talked to us about how he feels when we would catch him flapping hands and crossing his eye.
I can see the difficulty you are facing. Nothing will replace and work as much as love, patience, and removing sources of stress. Be careful that you and others around your kid can be the biggest sources of stress.

While he is not married yet, I am concerned about his kids when he gets married. But maybe it skips a generation or he will know how to best deal with it since he had the same difficulty (or I should say joy).

I wish all of you and your kids the best.

Jun 18, 2014
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to recent bloggers
by: Roger D. Freeman, MD

DCD is official and has been in the DSM since 1994.
Stereotypic Movement Disorder has also.
"dyspraxia" was rejected as the term for DCD because it is used in adult neurology for a LOSS of skilled motor function, not developmental.
Sensory Processing a Disorder is not official but has been used mostly by OTs. It may become official in the future.
Because DCDis an official medical diagnosis, it cannot be officially diagnosed by OTs, but ironically OTs are usually needed for the fine-grained assessment of gross, fine, and graphomotor coordination.
I advise that you not try to make perfect logical sense of all of this, because some of the terminology is still in a state of flux.
Do not expect most teachers to know about this because it isn't in their limited special-needs training, so far as I know in either Canada or the USA.

Jun 17, 2014
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Dyspraxia /DCD/Motor Apraxia
by: Isabella

Dr. Freeman, thank you so much for your study! I googled you and found it online - it's great information and fits my kiddo to a "T." It also fit me as a kid, my brother and other family members. I guess this "quirk" just runs in families! Incidentally, my child calls his movement episodes "creative shocks" as he is making up stories when he does them and then he writes them down. (He wants to be an author and a screen writer when he grows up.) He has an IQ over 130 and is very gifted. Most teachers think there is "something wrong" with him (last years teacher wanted to "fix" him with behaviorist during school even though he's "good" just quirky with his pacing, etc. But I have always respected his creative shocks" and we get a few weird looks now that he is older. He is nine and is now just starting to be more self-conscious about them and thus control them and make them more during private. We talk about it and why he may want to try to control them more but we have always practically celebrated that he has them since so much creativity comes from them for him. Anyway, he has also been diagnosed with mild "dyspraxia" I know you said that is not the correct term. Here in a major city in the Northeast a neurologist at the Children's Hospital diagnosed it as "Motor apraxia." A neuropsych called it DCD. But both also used the word dyspraxia freely and practically interchangeably. However, I think it is really important to point out that here in the USA OTs CAN NOT diagnosis anything. It was an OT who told me that is what my son had (dyspraxia/DCD) but none of the OTs who picked it up could officially diagnosis. Only doctors could do that. Thanks again for the info you give on this blog and for your study. It's nice to be able to relax about this! :)

Jun 13, 2014
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Diagnostic terms
by: Cyndi

Thank you again Dr Freeman for clarifying. Couple comments and two questions for Dr Freeman.

My daughter has Sensory Processing/integration issues ( disorder), developmental coordination disorder (formerly called dyspraxia) and stereotypic movement disorder (which is basically non autistic complex motor Steteotypies) also to us known as "flapping" in her case also open mouth, and often a kick when she is very stimulated. She is 5. I don't think Stereotypic Movement Disorder is in DSM yet correct? Most peds don't seem to think serious unless affects learning. The DCD (old name dyspraxia) does cause her learning difficulty. 1. Is DCD in the DSM or some other diagnosis under neurological disorders? Obviously it's not affiliated with ASD (autism) anymore. 2. Is Sensory Integration/disorder "issues" classified anywhere? My daughter's teachers have never heard of Sensory Processing Disorder or Develop Coord Disorder. I have provided them handouts but I still feel like I am a hypochondriac and overreacting to her issues and am wondering if I will ever be able to be taken seriously if when in the future she will need accommodation. ( for example typing instead of handwriting essays later) having questions read to her to either verbally respond or give extra time to handwrite if they are going to need that. We are not at that point yet, but I see it being more of an issue after 1st or 2nd grade.
Thank you for considering. Cyndi

Jun 13, 2014
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Several recent bloggers
by: Roger D. Freeman, M.D.

All of you would be advised to be aware of the following: the terminology used in these posts is at least partly confused and confusing because of (1) the shift to DSM5 [Diagnostic and Statistical Manual of Mental Disorders] from DSM-IV-TR last year; (2) abbreviations that aren't specific; (and lastly "dyspraxia" isn't an official diagnosis, but an older UK usage for now the official Developmental Coordination Disorder).
Asperger and PDD-NOS have been retired as official diagnoses, subsumed under Autism Spectrum Disorder (ASD); "SPD" is mostly used by OTs and some others for Sensory Processing Disorder, but for "Social Pragmatic Disorder" it is not a commonly used abbreviation at present.
Please be aware that we clinician/researchers are having some difficulty ourselves aligning our terms consistently! The DSM terminology is a problem, too, because lay people don't think of some of the disorders in it, like neurodevelopmental disorders [Tourette, ASD, DCD] as "mental." But for partly political and economic reasons other disciplines than psychiatry are using DSM terminology.

May 23, 2014
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To Ally in Florida re handflapping
by: Mom of two boys

Hi. Your son sounds a lot like mine. At two he would stand in front of the television and jump up and down and flap his arms. I thought it was cute...until he kept on doing it and never stopped. His nursery school teacher told us he was autistic. I tortured the poor boy and took him to every doctor by the age of 5.

He is now 8 and has been diagnosed with ADHD and Dyspraxia but is not on the spectrum. The jumping up and down has now subsided and has switched to obsessive pencil twirling while looking up in the sky. He mostly does this in the home setting and not as much in a school setting, but does do it in school. At the same time, he is the brightest, most well behaved, well mannered, funniest kid you ever want to meet.

His 6 year old brother, who also is his best friend, has also been diagnosed with Dyspraxia and ADHD as well. Where as flapping started for his older brother when he was two, my 6 year old pretty much began flapping last year at 5. He kind of just runs in place and his heart is ready to jump out of his chest. When I can, I grab a basketball and take them outside to shoot some hoops. It helps divert their attention.

Both boys have learning issues and have IEP's. Where my oldest is extremely bright but has trouble focusing, my youngest really struggles in school and he is only in first grade. All this being said, I've been looking for answers when it comes to the flapping for years now and everyone just tells me to divert their attention.

Also, I am new to the Dyspraxia diagnoses for both sons. If anyone has any advice for me, I would love to hear it.

May 21, 2014
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for all
by: Anonymous

My son, who is nine-years-old is diagnosed with Pervasive Developmental Disorder-NOS, ADHD, Mood Disorder NOS, and Oppositional Defiant Disorder. I share the frustration with all of you on desperately seeking answers from a myriad of "professionals," and seemingly coming away with nothing concrete. It is a journey for all of us. I just want to encourage all of us by saying that the take away for us should be that everything a child does is for a reason. The more we can understand why our children behave the way they do they better we are equipped to help them be happy and successful. We have to be careful to never try to make them be like anybody else. We love our kids no matter what and many people will judge and criticize us and claim what they would do if they were in our shoes but they are not in our shoes and have no idea what they would do. I hope we never make our children feel ashamed of any of their idiosyncrasies. I owe the world nothing but I owe my child the world.

mom of 2

May 04, 2014
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My son is taping his chest.
by: Careen

Hi, just recently I have noticed that my son is slapping his hands against his chest like playing a set of drums. As I am not used to this behaviour, I have been asking him to stop himself from stimming, but when I sit down to write my essays for university, he is at it again. I am awaiting a appointment to see a paedritrician but I was informed by a teacher last night that this could take up to two years. Could my son have Autism?

May 01, 2014
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more labels
by: Brian S

So...this is like Chpt 10 in my quest to have my daughter correctly diagnosed. Many have seen my previous posts of my 4yr old being put thru several evaluations since she was 2, and the outcome has been: 2 autisms, 1 speech delay, 2 no-autisms,, 1 possible aspergers, 1 possible adhd, and a few sensory ones. After 2yrs of speech and OT, my daughter...aaccording to the experts, still has a delay in pragmatic language, and still stims. The stimming they can't tell me what it is: visual, vestibular, sensory, etc. But with the new DSM-V, what a coincidence, they now labeled her with Social Pragmatic Disorder. The psychologist said had it been last year, she would've been in the gray area of autism, but with the new disorder, she has SPD. I find this amusing. The next DSM will have other pretty names and the experts will throw those around too. We've seen developmental pediatricians, psychologists, therapists, clinicians, neurologists and autism experts...and all they can jointly say is: we don't know. I wish my job would pay me to say I don't know.

Apr 20, 2014
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Only 1 arm flapping, head shaking, rocking, very loud noises
by: Anonymous

I just want to know, if your grandson is 8 months old and is exhibiting these behaviors, should you try to hold them down, example hand/arm flapping, should we gently hold the arm down gently or should we just let it flap, should we allow him to roll his head from side to side about 4-10 times in row, and when making grunts or loud voices, tell him to tone voice down? I don't want to have him miss diagnose at such an early age. But as a grandmother, I just wanted to know if you should try to discourage those actions mentioned above at 8 months old? I don't want to inhibit any natural progression or sequential steps of development. Thank you very much.

Apr 19, 2014
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She or he will grow out of it
by: Anonymous

My daughter had the same exact thing . She flap her arms and get so excited about thing that she couldn't contain it . I had 4 teachers tell me about it from 1 st grade until 4 th grade tell me there was something wrong I took her to the doc and had her tested she was more intelligent then most of the kids in her class . Kids are kids and guess what they have quarks . People are looking to find things wrong all the time just tell them to do there job and stop them from stifling there happiness my daughter is 17 yrs old and on the honer roll .

She reads at collage level . And she is getting ready for collage. She did grow out of it at age 10 . But I still miss when she was little and so happy she did a dance of hand flapping.

Apr 17, 2014
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My little sister
by: Anonymous

My little sister has done this ever since she was a toddler. She sets a toy or a picture or a book in front of her and goes into imagination apparently. She rocks back and forth and flaps her hands, sometimes even makes sound effects. But sometimes she'll come out of it and go back into it if we get her attention. She only does it when she's relaxed at home but she is an average kid. I mean, her grades aren't the best but I'm a little worried about her; please help?

Apr 13, 2014
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My lil bro
by: Anonymous

My little brother has autism even though u don't do drugs and my little brothers birth parents did it does not mean ur child can not have autism my little brothers have all those same symptoms and has the same thing and he has ADHD I have ADHD as well I was also adopted even though my brother is not blood related to me that's fine idk he is still my little brother I would say go to a ADHD autism doctor and talk to them they could put him on Medicine that helps and all which I am I for my ADHD but from what u said it sounds like autism

Apr 03, 2014
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not Tourettes
by: Brian

Tourettes is defined as a tick, physical or verbal, which is repetitve in nature and duration, and is involuntary. In other words, an outsider can't stop it, it runs its course. With my daughter, I simply touch her, call her name or redirect her and she stops, which makes me believe not only that it's voluntary, but that it's not Tourettes or Complex Motor Stereotypies. I think its sensory hyposensitivity...she needs movement, whether it's visual or vestibular or both, I don't know. An OT noticed that after spinning her around on a tire swing, her eyes didn't have much movement. The OT said that was proof of understimulation. My sweet daughter immediately debunked that theory by saying "I'm dizzy". Nice try OT...feed me another clinical line.

Apr 02, 2014
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Son's hand flapping,jumping,headshaking
by: Jasmine

What you have described sounds very much like me to Tourettes . My grandson was diagnosed a few years ago.Your child shows classic symptoms. In Tourettes they cannot stop involuntary movements of their body. The tics can vary and some can get quite embarrassing.

One of the interesting things about Tourettes is that it seems to go hand in hand with ADD so not only do you have a child displaying erratic movement but also endless energy. Tourettes does not make the child any less smarter but ADD can sometimes slow the education of a child down.
My grandson has had to take medication at times to slow down the body movements but can sometimes make him too tired. Even though Tourettes is not overly common it is better to find an answer to your child's problem to at least find a remedy. Hope this all helps.

Mar 20, 2014
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to Cindi
by: Brian

Thanks for the info Cindi. My daughter doesn't flap, I guess the title of this message board is a bit misleading. My daughter does the following: runs back and forth while humming and grasping a toy, she taps her toys a lot qhen she's playing with them, she zones out a bit, she does this Stevie Wonder thing where she looks up with her eyes, and sways her head side to side slowly, she jumps around like Tigger when playing or excited. She's 4...she was potty trained at 3, brushes her teeth, and does well with big buttons on her jammies. The neurologist believes that all these behaviors prevent her from being more social. That's qhy this is so frustrating...is it stimming becuase she has sensory integration dis, or becuase its autism, or it's quirkiness, someone please just tell me?!! She did OT about a year ago, but it was no different than what she does at MyGym...swings, trampolines, large balls, gymnastic stuff. To your point perhaps something more sensory focused.

Mar 20, 2014
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"Dyspraxia"
by: Roger D. Freeman, M.D.

Just for your information: dyspraxia is not the correct term for coordination problems in children and youth; it is still used sometimes in the UK, but the official diagnostic term worldwide is Developmental Coordination Disorder. We found that DCD was more common in our SMD children than the 5% expected in typically developing children. (It is also more common in those with ADHD.) There is now a very large research literature on DCD, which is properly diagnosed by OTs.

Mar 19, 2014
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To Brian, sensory processing
by: Anonymous

Hi Brian.

I totally feel your pain, that was me about a year ago. I was so PO'd that the behavioral neurologist we got a SMD diagnosis (who mentioned sensory processing, could be a possibility, never said anything about dyspraxia.) It was a year after the SMD (flapping) not autism diagnosis, that I had to go back and ask the neurologist will you please test my daughter for dyspraxia??????? The dyspraxia causes her the most difficulty in academic type activities.

How long ago did you try the OT? The OT (if you find one that knows about sensory processing, there are even certifications with that) can help with sensory issues or fine motor, but it will have NO effect on the flapping. What state do you live in? The OT has helped us a lot with toileting, dressing, buttoning, zipping, stringing beads, using scissors (that was huge, my daughter could not properly use a scissors until recently). She also still favors one hand a lot. Even for two hand activities, she often tries to do them one handed. OT has helped with that to. But to this day, if you throw a small object to her, she tries to catch it one handed. She still has a lot of difficulty with handwriting, coloring, but she is only 5 years old, so its a bit early to get too concerned about that yet. The next year or so will tell us more.

Hang in there. I can recommend, but just my opinion, good books about Sensory Processing, a quick one, Sensory Processing Disorder Answer Book, 250 most common questions by Tara Delaney. And The Out of Sync Child by Carol Kranowitz. I have read about 5 books, but am FAR from feeling knowledgeable. Just barely armed.

Mar 19, 2014
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Hand flapping
by: Livio

Hi . Read almost all comments here,.quite comforting for us, as we've only found hand flipping information directing us to autism. Still a bit confused, but more confident and less of stomach pain( due to stress). Our concerns at this point are mainly hand flapping plus few other things probably due to comparing him with other 15 months who engage in more gaame playing and curiosity( plus tiredness , as he only slept trough the night only in a 7 days holiday.). He's not walking yet, not even crawling properly .
Have so many other things to say but it will take me more than the 3000 characters to put it . Plus that I observed here and on other forums that we tend to 'find and diagnose' our children when have more or less motives to do this. There's a thin line where we as parents have to stop searching for answers and solutions to our conerns/problems.
Can anyone email me the study on: mihai_liviu_f@yahoo.com
Many thanks!

Mar 18, 2014
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follow up
by: Brian

So..the drama continues. I emailed the neurologist, the same one who told me to enjoy my daughter and ignore tthe stimming as it may pass, and told her that the state tested her and revealed a delay in social interaction. I also told her of my daughter's continued stimming, and she now replies back with: perhaps it's adhd or sensory processing disorder. Really? She brushed it off a year ago telling us not to worry about it and now she's mentioning 2 possible disorders?! Hiq can they be so unsure, so cavalier in their decisions? She said OT and/or possible medication. OT didn't work after about 8mos...and medication? This clinic has already misdiagnosed her twice (with autism and with "nothing". Someone give me faith!

Mar 16, 2014
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to Rita
by: Brian

Thanks for your promising words Rita. My daughter just turned 4. We've been on this ride for exactly 2yrs, with her pediatrician, a state evaluation, an autism expert and a world renown autism center. You make a great point which I always bring up: if kids are too young to diagnose, then why do it? Why do these doctors and clinicians insist on labeling one minute then contradict their own opinion by saying kids change so much they shouldn't be diagnosed? Is it money for therapies, is it funding for programs? I'm starting to think so. I can appreciate not taking the "wait and see" approach, jumping all over early intervention when the brain is so malleable, but the contradiction in diagnosises, the wide range of opinions and mislabelings leaves you wondering not only what your daughter truly has, but whether these "experts" really even know what they're saying.

Mar 16, 2014
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To Brien
by: Cyndi

Hi Brien, did you ever have an occupational therapy evaluation for your daughter? If your doctor won't give you a referral, you can go to most peds therapy clinics and ask for one. When I paid for our first assessment it was like $250 w/o insurance because at time, I did not have a referral. I just told them at the time I would pay cash, no problem. I had to fill out extensive questionnaires and forms ahead of time, then it was an hour or so evaluation. Bring videos on your phone or ipad/tablet of your daughter flapping. Eventually I was able to get two more occupational therapy assessments done covered by insurance under "developmental delay" code. That paid for most of assessments. My daughter was evaluated at 3, 3.5 and again at 4. She is not socially delayed at all, and very smart, but she could not dress herself, frustrated with any fine motor tasks, throwing pencils, markets, etc., self care issues, not potty trained at 4. Some odd playing behaviors, over interested in spinning objects, running water, lots if odd things.

My impression, unless your child's development or education is being affected, doctors do not think it's a big deal. Once I could show them test results from occupational therapist that she was at 2.5 year old level at age 4, then pediatricians took more interest, and we also found out about dyspraxia, which I then had to go back to neurologist for testing, one year AFTER the autism testing. I'm like why didn't you test for this when I said she could not dress herself, trouble with any fine motor toys. No answer.

So, we ruled out autism first, then if was pretty much on my own to figure out problems. But there are some pediatricians who are helpful to me now. They don't know anything themselves, but are willing to give me referrals for almost anything I ask for learned on my own and from others on this message board and the Facebook group. Keep trying.

Mar 16, 2014
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Typical
by: Rita

Brian, how old is your daughter? Your experience seems odd unless your daughter is very young. I understand that many professionals do not want to diagnose when they are very young because kids do change so much.

My son is a very typical example of Dr. Freeman's point. At age 3-4 he flapped his hands quite a bit and preschool teachers started bringing up autism. He was and still is on the shy side with other kids, smart, but a bit quirky in his interests. He was assessed by both a developmental pediatrician and the school. Both of them said he was quirky but not enough to warrant a diagnosis of autism at that age. Fast forward he's now a thriving 10 year ild with many friends and doing great in school. He still flaps his hands when excited but has learned to control it around peers better. He's extremely creative, smart, and seems just like other kids. I'm glad we didn't get an autism diagnoses so young, it really would of confused things. I understand that for some a diagnoses will get needed services so that's another story, but for us we did do some therapies but just paid on our own. Good luck to all of you.

Mar 16, 2014
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response to Dr
by: Brian

That's interesting because my daughter has a severe social delay, stims, yet the "experts" are wishy washy about her. She's been diagnosed twice with ASD and twice removed it but with an asterisk (let's keep watching her, observe her and follow up). How much poking and prodding is needed by "experts"? And they can't even give me a concrete diagnosis of ANYTHING. I'm no doctor or clinician but I know my daughter, and I have 3 NT nieces and I've been to several playgrounds, birthday parties and playdates...something is not right with my daughter. Bottom line is...we're not dealing with medical conditions. A blood test won't help. This is clinical work, and unfortunately, all is based on opinions, and a snapshot in time when your daughter is examined.

Mar 15, 2014
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Hand-flapping and autism
by: Roger D. Freeman, M.D.

I wish I could finally lay this myth to rest... Hand-flapping is *NOT* *NOT!!* I repeat NOT a sure sign of ASD!
Children and adults with ASD may flap, but so do blind children and some typically developing children who receive the diagnosis or description of SMD (Stereotypic Movement Disorder).
After all the entries here and many good examples, if readers would read through enough of them, they will see that this is a dangerous myth, unfortunately put forward by a few clinicians, and the ASD idea is typically suspected by preschool teachers who don't know better, despite a child's excellent social functioning.

Mar 15, 2014
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Autism - Hand Flapping
by: Anonymous

We first noticed that my now 16 year old daughter wasn't babbling "mama" "dada" around the age of one. She was extremely quiet, but would smile often. She also started walking at around age 1. The doctors were very dismissive of our concerns and stated "oh well some children just start speaking late". We began to notice a "disregard" for safety in dangerous, scary situations. Things that would normally terrify an unsuspecting person; didn't seem to faze her. In one instance, a vicious dog suddenly started toward us from behind a weak fence one day as we pushed her in the stroller. Everyone was terrified, my daughter simply giggled. She would smile or giggle. The hand flapping and excitable jumping would come when she was both very happy AND angry about something. I also noticed that she does the hand flapping as she dances to music. She is fascinated by her shadow on the wall/she faces the wall while dancing to the music and is thoroughly enjoying herself. She is a typical teenager in every way; but isn't vocal unless she feels its necessary. She speaks in a monotone voice and at very low levels. The hand flapping is a SURE sign of autism. For the doctors to disregard that factor seems negligent.

Mar 12, 2014
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Clarification
by: Cyndi

Hi Brian. I meant a regular pediatrician can help you get an IEP plan with your school to make accommodations, but you are right they are not a help with getting a diagnosis. I think the person asking below whose child has anxiety can be helped with those anxiety issues by a child psychiatrist. For motor issues other than the stereotypic movement disorder, sometimes occupational or physical therapy can help diagnose that. As for the flapping/stereotypic movement disorder we did get a diagnosis from a neurology behavioral pediatrician at both Gillette Children's in St Paul, MN and American Family Children's in Madison, WI. But, there is supposedly nothing we can do about that. So just to clarify, no real treatment for "flapping" behaviors, but there are treatments for anxiety and some other quirky behaviors. I was also super frustrated for the longest time because I felt like I could not get the answers.

Once I stopped trying to get insurance to cover stuff and just did it on my own and cost, it was better process. Not saying everyone should do that, but for us it was possible.

As for the stereotypic movement disorder, perhaps it can be helped with behavior modification if your child is 8 years old or older. Mixed results for people with that. But not usually anything they can do before hand. We have not done that type of therapy, but I notice my daughter now clasps both hands together near her chest (kind if like praying look) and it sometimes can keep her from flapping. But it has to be her choice and I do to want her to be embarrassed about it. We are trying to make it seem like not a big deal, just something she does. And if it starts to bother her in future (kids make fun of her or whatever) then maybe we would try that behavior modification therapy. But for now, we don't do anything about the flapping except let her teachers or babysitters know so they don't assume she has autism or Tourette's. Yes, I have had a couple pediatrician a think it was that initially, but quickly able to dismiss that. It is a frustrating roller coaster and all of our kids have separate issues. Some just the Stereotypic movement disorder, but some that AND other issues like anxiety, OCD or motor coordination issues. I kept trying to get one diagnosis to cover it all, but it was actually three different diagnosis that had to be done by three different medical experts. Makes it complicated for us parents!

Mar 12, 2014
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it's a roll of the dice
by: Brian

To say that a pediatrician or psychologist or neurologist will help diagnose is an assumption, especially when faced with stereotypical behavior, stimming, or whatever you want to call it. As I've said in the past...my daughter's developmental pediatrician didn't notice her behavior despite specilializing in developmental pediatrics AND serving on the board of a renown autism center. He refered us to KKI, where another developmental pediatrician diagnosed my daughter with mild autism, then 6mos later removed the label. A follow up visit by a neurologist at the same center reconfirmed she doesn't have autism but when asked about her stimming, she said kids do crazy things, she may or may not get over it, let it be. She didn't diagnose her, she didn't put much time into it, and ddidn't give it much importance. My point is...I have met no one in 2yrs of this rollercoaster ride that will diagnose her with CMS, much less even look into it, and give us any help or explanation. It's either a topic they have no knowledge about, it's a nonclinical/nonmedical diagnosis, or they have bigger fish to fry than to figure out why our kids jump up and down, sqay their heads back and forth while staring at the sky, or tap their toys while playing with them. It's a roll of the dice. Good luck to us all.

Mar 12, 2014
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Quirky behaviors
by: Cyndi

Hi. I just wanted to add to what Dr. freeman said. The flapping behavior, which many of us call stereotypic movement disorder or complex motor Steteotypies are just that behavior. Your child could need help with other issues. You could get an assessment from a regular pediatric psychiatrist or psychologist. They should be able to advise you if there is more that can be done and perhaps help you through getting an IEP plan for your son at school. Also your pediatrician should be able to help you get an IEP (individual education plan) plan as well. If you have an ADHD or anxiety related diagnosis. Perhaps he may also have some sensory processing integration issues. The stretching behavior sounds like something physical therapy or occupational there may know about. My daughter has fine motor apraxia and sensory processing issues. She has issues with temperature, extreme food aversions, over sensitive to sounds, used to spin a lot, but now more jumps slot, swings, jumps into pillows/mars, and likes to be squished, swing, all kinds of activities that if they do, can help her come back to be able to focus. At school, she may sometimes need an extra break to go in the bathroom and flap or jump around to be able to go back to classroom work. My daughter seems above average in school work and very social, but does have several quirky behaviors. Keep looking for answers and asking questions. You are doing the right thing for your child to keep asking.

Mar 12, 2014
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Flapping hands etc,,,
by: Anonymous

This is known as motor movement disorder

Mar 12, 2014
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trouble at school
by: Roger D. Freeman, M.D.

Parents need to appreciate that stereotypic behavior can be a diagnosis on its own, or associated with anything else at all as a symptom, important or not, depending upon the person's other qualities or problems. Your son sounds like he has an unusual degree of anxiety and phobias, so should have a comprehensive assessment that focuses on the whole child, not just stereotypy.

Mar 11, 2014
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Trouble at school
by: L. Herr

My son is 11 years old. We have been dealing with a number of issues since he was very young. He is diagnosed with Add/Adhd, OCD and anxiety. I get a lot of complaints from his teacher sat school. He is a big daydreamer, seems to space out and will raise his hand to ask the most random questions. He rubs on his ears, sometimes until they are raw. He sometimes hums or sings when he does homework. He will fold his arms into weird positions and when really stressed, sometimes feels the need to stretch. Problem is, he does it on the floor. I've asked the teacher to allow him to work standing, which he prefers, but she won't allow him. She is constantly emailing me about his behavior. I don't know what to do? I told her, his behaviors are the same at home. He is paranoid about missing the bus and will sometimes get so worried he cries. He hates when they have a certain bus driver because he says he drives too fast. He is scared of most animals, squirrels, birds, butterflies, if it comes near him, he runs. New places and loud sounds bother him and cause an intense anxiety. I don't feel like the school is willing to accept his disabilities or even try to work with him. Is there something else wrong?

Mar 06, 2014
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Proud Parent
by: Anonymous

Thank you for expressing your courage, and daring to be yourself. The world needs more mothers like you and there would be less anti depressants and alcoholism.

Feb 28, 2014
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7 Yr old Girl Jumper and Hand Flapper
by: Proud Parent

My Daughter is now seven and has jumped up and down while quickly opening and closing her hands since she was two. We have her in a Montessori school so that she can have freedom of movement. She is either equal to or has excelled her peers in every academic area. She is extremely creative and imaginative. She is constantly making up very vivid and detailed stories to tell us but does not like to write due to a poor prehensile grasp. So, we got her a computer so that she can type her stories. This is a wonderful outlet for her. She reads everything she can get her hands on and has to release her excitement when she gets to the climax of the book. Her class does French immersion and she is the only one who will speak fluent French to her teacher at school. No one in our household speaks French except her. She is sometimes teased at school when she exhibits her movements and will come home and tell me she just wants to be like everyone else. I tell her that she does this because she has a special gift inside her that just can't wait to get out. That these movements are her gifts getting excited about her awesome future. And that it is going to be okay. Those kids will be lining up to be your friend when your talents are ready to show themselves. Just have patience! My daughter only exhibits these traits when she is happy and/or excited. It lets me know when she is truly happy and I love that!

Feb 26, 2014
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My son still jumping and he is turning 20yrs
by: Anonymous

Hi I haven't discovered why my son keeps doing this I figured he would grow out if it. He is planning on joining the military I'm little scared if he can not control this jumping. He does this when Alone in his room but if I catch him he will stop. Up and down excessive hours. He is behind 2years mentally but he is an awesome man. Will he ever stop? When he was younger I viedo taped him and saw a neuroligist dr. Said he is letting out energy normal .. It not normal

Feb 10, 2014
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Also to Brian
by: Anonymous

Yes, it is true that medicine (especially in relation to this!) is far from an exact science. It is always changing, different professionals are going to have different opinions and ideas, and I don't think there is anything wrong with that. Parenting is also a very imperfect science. There are going to be so many mysteries and "problems" that your child will have that you can't easily figure out or solve. It is overwhelming because you can't solve or even understand them all. Your daughter is so young still, not even in kindergarten yet. My son who is 9 has changed drastically from when he was 4 with suspected ASD and repetitive movements. He still has some quirks, but does great in school, has good friends, and no signs of ASD, but still flaps a lot when he's excited. It's not a big deal. Now I have more problems with my "typical" 6 year old daughter and feeling left out from friends. The point is....there is no perfect answers to this. It sounds like you have a done a great job trying to get help for your daughter, but if all of these people who see so many kids are saying it's okay, it probably is. Being a parent is hard but they grow so fast, deal with problems as they come, and please enjoy your daughter as she is.

Feb 10, 2014
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Response to Brian
by: Anonymous

Brian, I would take the advice to enjoy your child. Your child is still so young. She will change often. I did receive a diagnosis at a young age for my child although I never agreed with it. But it did cause me to over analyze everything my child did which made me miserable. All children may not socialize as much as others just like some adults do not either. You also have to remember many of those diagnosis are not hard fact. Look at how often they change. These diagnosis are made on observations that could have many causes and these professionals are not always correct. I am not trying to discount your concern but do not want you to worry and fret as much as I did in those early years. Also, would encourage you to check out SENG. It has many great articles about gifted children and sometimes their atypical behaviors. Hope this can provide some peace for you or others. (My child is 11, also)

Feb 10, 2014
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replying to anonymous
by: Brian

Kennedy Krieger is associated with Hopkins, and to continue my displeasure with the medical community, when I tried contacting Johns Hopkins to speak with the head doctor leading the Complex Motor Stereotypes research there, I'm told to stay with KKI because that's who has been seeing my daughter since the beginning. I'm tired of uninformed individuals and politcal bs. I even had 1 "expert" aay she might have aspergers, yet she was speach delayed. A very known characteristic of aspergers is early speech develppment. Weeks later, another "specialist" said she's too young to be diagnosed with aspergers, yet "experts" like KKI say they can detect and diagnose as early as 6mo.

Feb 10, 2014
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update now school aged
by: Kim

My son Franky is now 5. He has been hand flapping since birth, and starting around 2 added jumping to show his excitement. He does this only when he is super excited and it's obvious he is just releasing some pent up energy. He is totally normal and functional in all other facets of life. His teacher however in kindergarten is suggesting this release is disruptive in her class and she has suggested she is trying to have him sit instead of stand in class, but that he will get up and jump anyways. I don't want to give him a complex, and I'm not sure forcing him not to do it in class is the answer. As we are in Canada and our medical system is a bit different, our pediatrician hasn't even heard of stereotypies and has always just brushed off Franky's mannerisms. Does anyone have any advice?

Feb 10, 2014
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update now school aged
by: Anonymous

I wrote about my 3 year old son 2 years ago. He still flaps his hands and jumps around when he gets very excited. He is now in kinder-garten and his teacher is finding his behaviour disruptive. As we live in Canada, our medical system is a bit behind the curve and our pediatrician has never even heard of sterotypies never mind anything else we have discussed here. The teacher has suggested to me she is trying to have him sit instead of stand when she needs him to focus, but that he will get up just to release and it's causing her problems. I don't know what to tell her as the only time he jumps and flaps is when he is engaged and excited about what she is teaching. I also don't want to give him a complex as he's completely normal/functional in every other way. Any advice? Kim

Feb 10, 2014
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CMS
by: Anonymous

Brian, have you looked into primary (non-autistic) motor stereotypies? There is some information on the john Hopkins website and also an active Facebook group. Good luck

Feb 10, 2014
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lost faith in medical professionals
by: Brian

I've been writing on here for over a year, ever since my daughter has been diagnosed with autism, then had the label removed, then was labeled age-appropriate in every catagory, then was told she's behind socially and in creative speech, then was told there's no such thing as creative speech, and finally was told "she stims, it doesn't bother her, don't worry about it, enjoy your daughter". All of this back and forth diagnosyses and contradictions, opinions and evaluations have been from clinicians and medics alike. From speech and OT therapists to developmental pediatricians and neurologists.

Some blame lack of funding and research, others blame lack of knowledge in autism and sensory issues. I blame disinterest. How can my daughter walk around the playroom, holding a doll upside down, while tapping the dolls feet, and not engage in play with her cousins, and be told...she's ok, probably some sensory stuff, stop worrying, and enjoy her. That was a neurologist. How can I not worry if she's 4, and not playing with kids her age, paces back and forth, sways her head from side to side while looking up.

People ask why do I want a label. I dont want a label, I want a professional to prove to me they know what they're doing instead of brushing us aside with terminology I can find on yhe internet and with false hope I can provide to anyone..

Feb 09, 2014
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Jumping - forgot to add...
by: Anonymous

I made the comment below, it seems to have cut off the last bit...

This isnt so much because i want him to appear normal, but more because he does it SO MUCH that it seems to be taking a physical toll on his body. Im worried its going to hurt him...he shows exhaustion, but wont stop. I have to physically pull him into my lap to calm him (which isnt going to be possible at school).

Feb 09, 2014
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Jumping
by: Anonymous

My 6 year old son jumps whenever he gets excited, trying to understand something, when telling us about anything, or when he is watching anything. He has been doing this since he could walk. We were screened by child development services and they told us he had SPD and it would "go away" eventually. They wouldnt help him, as it wasnt interfering with his ability to learn.

My fear is he will be judged and teased by his peers. Ive already heard some kids in the classroom asking what is wrong with him, why is he so hyper, why does he do that, etc...and ive had no luck in getting any doctors to help us with this. Have any of you had any luck in helping yours release this energy "quietly"? Would some kind of nubby foot stool help provide relieve and eliminate a need for jumping?

He jumps so much that i worry he is harming his body...he exhausts himself but keeps doing it (because he cant control himself) :-/ Was hoping to find a way to help him relax.

Feb 09, 2014
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Jumping
by: Anonymous

My 6 year old son jumps whenever he gets excited, trying to understand something, when telling us about anything, or when he is watching anything. He has been doing this since he could walk. We were screened by child development services and they told us he had SPD and it would "go away" eventually. They wouldnt help him, as it wasnt interfering with his ability to learn.

My fear is he will be judged and teased by his peers. Ive already heard some kids in the classroom asking what is wrong with him, why is he so hyper, why does he do that, etc...and ive had no luck in getting any doctors to help us with this. Have any of you had any luck in helping yours release this energy "quietly"? Would some kind of nubby foot stool help provide relieve and eliminate a need for jumping?

Feb 04, 2014
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shaking of pencil, how to I get her to stop?
by: Anonymous

My eleven year old daughter has to have a pencil or pen in her hand and she shakes it all day. The kids at school tease her now and then but most have gotten used to it. I thought she would outgrow this habit but it seems to have gotten worse. HELP!

Jan 31, 2014
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I do this
by: Sam

I have been doing this exact thing since I was very young. Also my uncle and younger sister do the same things. We are three very creative people of our family. I have learned to control it along with my uncle and sister and it has caused absolutely no problems in our lives besides, when we were younger, some people thought it looked odd when we were doing it ( I'm sure it did!). I also went to the doctor for it when I was young and they said they didn't know what it really was but I don't think it's serious ...... I am 26 years old now....my uncle is 45....and both of us still catch ourselves in that weird state but it's easier to control it seems. Basically when I do it, I tense up, flap and do this weird thing with my hands, my vision is blurred, and my mouth and facial expressions are as if I'm not all there. I believe your kid has he same thing. It sounds scary but I know it happens every time I am really concentrating....especially if I'm drawing or doing something creative.

Jan 24, 2014
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constant jumping
by: mary

my son is 5yrs old and he constantly jumps up and down waving a brush in his hand, if i take the brush off him he will find something else to use, sometimes he talks to himself while doing this, apart from this he is a normal child i just need to know what this is and can i do anything about it im so worried.

Jan 06, 2014
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flapping jumping twitching
by: claireý

Hi my son is 5 and was diagnosed with severe verbal dyspraxia and generalised dyspraxia at 3. He does all these things usually when he is excited or stressed... It seems to be an overload of messages which are sent causing this behaviour.. For anyone worried about these things and believe me it is worrying, have a look at dyspraxia imformation, some of your stories sound similar to ours. Good luck n I hope this helps.

Jan 03, 2014
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My daughter 10 years old
by: Anonymous

My daughter is 10. She is a very bright girl and excellent in art. She has no problem with school work, she actually teaches me things I didn't know! She does all her homework without me having to say. She will be starting secondary school so I have a concern that she will be folding her hands together very tight and open her mouth wide. She has done this since she was 5. The doctor said she will grow out of it. I do stop her when I see her. Should I stop her? I've noticed she does this when she's excited about something or likes something. I have asked her why she does this, she gets upset and says I can't help it. She says she just thinking. The only reason why I'm worried is other children laughing as her cousins have done. I have asked the teachers if she does this but they have all said no. She seems to do it more now. I'm just hoping she could maybe find a way to control it when she is secondary school. I wouldn't change her for the world I just don't want her to be upset when other children laugh if they did see her doing this.

Dec 28, 2013
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Anonymous' question
by: Roger D. Freeman, MD

By description your son has a brief, mild, stereotypic pattern that shouldn't be a concern. It's not impairing enough to even diagnose it as Stereotypic Movement Disorder. Usually this pattern is related to excitement or fantasy and becomes private so there is no social problem once the child is in the teenage years. It sounds like your son's pattern is much less important than most of the persons posting here, but if you don't know what it is, that can be a source of worry. (I am assuming that in other areas of development he is reasonably well adjusted.)

Dec 27, 2013
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Hand Flapping
by: Anonymous

SOMEONE PLEASE HELP, my son who is now 13 has been flapping his hands since he was 3 but he is perfectly normal every other way he can contorl it in school but he does it for like 10 times a day and it always happens when he is on a computer like something exciting happens and he flaps his hand for about 5-7 sec he used to open his mouth when doing it but he controlled that, does anyone know how to stop it or what is this called?

Dec 06, 2013
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Hi. Brian
by: Anonymous

My son 2 1/2 it started when he was 2 we would be driveing in the car and he start look like be was grab at something that wasn't there in tilt his head back and smile and he would usraul only do it when he was tied now he start to much more and like u said al I got to do is say his name and he stop and be get shy and make fun of his self doing I took him to the doctor and they want to run test on his brain she test his motor skills is perfect he talk perfect for his age I just don't no y he dose this she told me she think he dose it for his own entertainment

Nov 27, 2013
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Reply
by: Jen

My son who is now 5 1/2 has been flapping since he was 2. We talk about it. He simply enjoys engaging in the behavior. He seems to feel like it enhancing whatever it is that he is thinking about. I used to worry about it excessively. It's emotional for us parents but if we really take time to understand that it is a behavior that is harmless and brings pleasure to our children than hopefully it will be easier to accept. They learn to shape the behaviors so that they ultimately do it when private or around people that they are comfortable with...
That's us- the parents :)

Nov 27, 2013
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TV increase hand flapping?
by: Mary

My son 3.5 years old, he has hand flapping since 1 years old, less flapping when he is 2.5 years old. But I found he flaps more these 3 weeks.

He flaps when he feels exciting, like playing some card games with family. And he flags when he is watching TV, when he saw some exciting screen, he flaps. Should he quit to watch TV and do more quite activities?

PS, he just has flapping problems, speech and social are fine. Thanks!

Oct 13, 2013
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Oct 12th "Anonymous"
by: Roger D. Freeman, M.D.

Re: your executive functioning concerns: this calls for psychological testing to determine the type and extent of that functioning, and suggestions for intervention. No other discipline is really qualified to investigate this.

Oct 12, 2013
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Executive Functioning Skills
by: Anonymous

Hi, my 8-year old daughter was diagnosed with complex motor stereotypy last summer in "an otherwise normally developing child." She flaps/shakes items in front of her face/hops around when she's engrossed in something imaginative, and tells me that she can control it somewhat in school, but that her mind will still wander. I'm a lot more worried about her executive functioning skills than I am the "stimming." She is so bright, but daydreams, loses things constantly, is disorganized and it exhausts her to plan ahead for anything. I've read other accounts here of older students with similar qualities who find/found middle school and above to be very difficult for it. What kind of help is out there to address this problem? (aside from prescription drugs)

Thanks so much for any help or information!

Sep 30, 2013
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waiting is hard
by: Karen

Brian, I know it's hard to not get that "diagnosis" that might come some day, but I totally agree with what the neurologist told you. Our kids are developing and changing all of the time. What they do and who they are at 3.5 years will change drastically over time. If she doesn't have autism and is getting the treatment to address her speech and sensory needs what is the point of labeling her with something right now. She is so young still and it's true, kids do weird things. Go hang out in a kindergarten classroom and you will be surprised at all of the weird stimming and behaviors that goes on with so many of the "neurotypical" children. I spent so much energy and time worrying about my son at that age. He is now almost 9 and still flaps when he's excited but has learned to hide it mostly around friends, or he realizes he's doing it and stops after a few seconds. He's an awesome kid. Honestly, just deal with these things as they come, maybe someday you will get that SMD diagnosis, but your daughter is still very young. Hang in there and focus on understanding her as a person rather than getting a label for her.
We were told by a wonderful developmental pediatrician to never make our son feel shame about his flapping. We have told him sometimes that in a restaurant or certain situations he might knock something over so he needs to try not to do it there, just like you wouldn't run in certain places. He also has been told that he should tell other kids, "it's just what I do when I'm excited" if they ask. That way it's not some strange thing that they might tease him about. We have told all of his teachers the same thing. It's worked well for him. good luck

Sep 30, 2013
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Diagnosis
by: Cyndi

Hi Brian. Nothing is usually done to treat SMD so many people don't get a formal diagnosis. But you should have been able to get one if you want from a child Neuro or child develop Neuro. My experience, that diagnosis does not really get you anywhere, but some peace of mind that it's not more serious! I've gone to a few places that are familiar with it, Gillette Children's in St. Paul, MN and American family Children's in Madison, WI in their neurology departments. Dr. Singer at Johns Hopkins is doing research and their website is helpful for information, we give to teachers and pediatrician a that we see. There is a list of doctors in various states on the Facebook website for stereotypic movement disorder. Maybe your daughter just has sensory processing behaviors? There are also several videos on the Facebook group showing the Steteotypies. My daughter almost always grimaces her face in a big O when she flaps often times she will even kick if she is really excited. But you can always interrupt her and she will stop.

Sep 30, 2013
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follow-up to responses
by: Brian

Thank you Dr, and all who answered. Based on the comments, I'm pretty sure my daughter has SMD, but who would be able to diagnose that? She's been to 2 development peds, a child psychologist, a child neurologist, and several OTs and SLPs. All have NEVER mentioned SMD or Complex Motor Stereotypes, instead, they say it's sensory issues (visual because she sometimes holds her toys to the side of her eye, and she does her "stevie wonder" (looks to the sky and sways her head side to side while humming and sometimes giggling). When I call her name, she stops. When I touch her arm, she stops. Other times she'll jump around like "tigger" when watching a cartoon she loves. Again, I'll tell her to sit down and she will. So is this sensory or stereotype? And again, who is qualified to diagnose? And from what I have read, there's no cure, no proven treatment, and one can only wait for her to adjust and hide.

Sep 29, 2013
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Cyndi's comment
by: Roger D. Freeman, MD

Yes, to be clear, OT therapy may be very important and helpful for sensory problems (which can make the life of the child and parents very difficult), but the evidence that's lacking is for treatment of the SMD specifically. The most likely treatment would be behavioral, but so far that evidence is weak (one paper on the subject, that I know of). The whole point is that SMD usually needs no treatment, but does need occasional modification of misunderstandings by those unfamiliar with it. For parents the difficulty is waiting a long time for privatization of the pattern to develop, before their fears of social ostracism can subside.

Sep 29, 2013
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Clarification
by: Cyndi

Thank you again Dr. Freeman for your clarifications and explanations. I want to also add that my daughters improvements from occupational therapy are with the sensory processing issues NOT the "flapping" that is just as frequent as it has been for 18 months but does not cause her or us much concern anymore. The sensory issues were making her a more quirky/awkward child and more of a social but also motor coordination issue. My daughter is 4 and still has difficulty dressing herself and potty accidents. Not developing quite on schedule because of sensory issues.

Sep 29, 2013
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Last few entries...
by: Roger D. Freeman, M.D.

To reiterate a bit from past conversations...
(1) Stereotypic Movement Disorder [SMD], by definition, requires some impairment or interference, but what constitutes interference? It doesn't mean that as a parent you're worried about it, or that your child doesn't go along well with all the transitions in activities in school, so it's not always clear what this criterion actually means.
(2) SMD is an ill-defined group of different repetitive behaviors, which can also occur in children who are otherwise normal, and those with ASD, early blindness, or intellectual disability. You can't make these diagnostic distinctions just by looking at the stereotyped behavior. You have to look at the whole pattern of development. When that's not done, many children are wrongly suspected of ASD.
(3) They may or may not have sensory peculiarities that can be best assessed by OTs, but on the other hand there is presently no good evidence that OT therapy will 'cure' SMD.
(4) If the child's stereotypic behavior isn't due to ASD or intellectual disability, it will typically gradually become private as the child becomes better socialized, but that may take several years. Thus the outcome often is good, but that doesn't mean that your child won't do the pattern they like in private...
(5) If people are interested, I can post a link to my book chapter on SMD when it is published next year.

Sep 29, 2013
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Sensory issues and "flapping" not autism
by: Cyndi

Hi Brian. My daughter started flapping like crazy at 2.5. We had her evaluated to rule out autism because besides the crazy flapping when she was excited or engaged/engrossed in an enjoyable activity, she would only eat cold food, certain textures which limited her to a total of 17 foods she would eat. She would not tolerate hot/warm water, baths have to be barely on warm side, she loves any kind of water running/fountains, wheels turning, Ferris wheels, etc., she rocks her body and hums when bored or to go to sleep, used to head bang on her pillow from age of one until present, acts oddly afraid of some noises, textures like ice cream or yogurt, acts weirdly scared, covers ears with vacuum, hand dryers in public restrooms, other noises that are not pleasant but most kids don't freak out, loves to spin in circles, and jump -trampolines are great. Quirky behaviors sometimes associated with an ASD. My daughter was also evaluated by speech and occupational therapists and was diagnosed with sensory integration disorder, sensory processing disorder, called many things, but same issue. Long story short, she has stereotypic movement disorder AND sensory processing issues in most of 5 senses, sensory seeking most frequently, except noise and foods. The two issues of stereotypic movement disorder SMD (flapping or some say stimming) does not also "cause" the sensory issues, not related that they know of because many kids with SMD do not also have the quirky sensory issues. My daughter also has fine motor apraxia, which took us another 6 months to figure out because we had to get through working on sensory issues. Again, not all kids with SMD have sensory or apraxia issues. But if your child is quirky like mine, she might. You can get evaluated by an occupational therapist by getting a referral from you pediatrician. My insurance only paid for the evaluation and three therapy visits at $500 an hour through a ranked hospital. After that, we have paid for all therapy on our own. The hospital negotiated bills down about 40%. Anyway, for us we started going in February and major improvements by July/August. We went once a week for three months then every other week. We are still going. I could talk more about school systems supposed to help kids 3-5 years old, but they don't do much in most places, depends where you live. If you would like to email or message me me thru this site feel free. I found this site 18 months ago and joined a Facebook group for stereotypic movement disorder and has helped me 90% more than medical community. Dr. freeman who checks this site also knows a ton of info. Most pediatricians and ped neurologists don't seem to think its a big deal. Certainly it's not as bad as autism, but it can be worse for kids who have the quirky sensory issues. Sorry this is so long, but I know how it feels to feel helpless in the dark. Cyndi

Sep 29, 2013
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Brian
by: Anonymous

Hi Brian
My son is 5 and does similar and we have had similar queries to you in his early years.
He still 'wiggles' his hands.
He attends school and the teacher reports he is super smart.
He only 'wiggles' now at home when he feels the need.

At age 3, we started calling his stereotypies a name (wiggles). We encouraged him to only wiggle when around us at home when he needs to. Dr freeman says children learn to do the movements in private which was our aim.
When our son was younger we would try to distract him. We also encourage lots of physical activity and watch his diet (gluten free).

Focus on all the positive traits your daughter has. This is just a small part of who she is. Allow her to do the movements and aim for them to be in a quiet place at home.
Goodluck!

Sep 26, 2013
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Yes, No, then Yes, then No...what is it?
by: Brian

My daughter is now 3.5. When she was 2, our county's toddlers program evaluated her and she was SEVERAL months behind in language and at the social/emotional level. Her pediatrician said she might have autism. We took her to a pediatrician who specializes in Autism, and he said "NO, just a speech delay". My daughter had very little eye contact, didn't respond well to her name, very little language (we were raising her bilingual), and she stimmed alot. Unsatisfied, we got her evaluated at an Autism Center. They said "YES, but on the mild side". We immediately started up on speech therapy and OT. We enrolled her in a toddler gym class, and the county got her into a 3 day "preschool" program. 8mos later, after much improvement and progress, the same clinic said, "NO, but we'll continue to monitor". Meanwhile, all of her therapist would tell us "I don't see Autism, she doesn't have it, she's too engaging, she's interested in what we do, she plays well with us". The county psychologist then mentioned "possibly Aspergers", and that most girls are good at hidding their austictic traits. Well...we finally went to a child neurologist who said "NO, she certainly does NOT have it". She laughed at the Aspergers comments because a trait of Aspergers is early development of speech, which my daughter was well behind. The neurologist also noted that my daughter played with every toy in the room without being fixated on one. She played appropriately with all of them. She engage me and mommy by asking us what several of the toys were. She played "doctor" with the neurologist. At that point, our only concern was her stimming. The neurologist said, "kids do crazy things. It could be sensory as well. For now, enjoy your daughter. Perhpas the sensory will pass". Right before we left, my daughter started stimming (she faced the wall, started humming, and pacing back and forth with her head tilted to the side). I looked at the neurologist and she simply looked at me like "what do you want me to say...it's sensory issues". I WANT TO KNOW WHAT MY DAUGHTER HAS! Is it voluntary or involuntary? Is it a tick, or a stim? Is it neurological? Will she outgrow it? Do I call her attention to it, or ignore her?

Aug 21, 2013
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im from hastings
by: Anonymous

hi no how u feel my 5 yr is the same he has a big obsessions with sticks and jumps up and down he nick name is tigger he also when he gets upset smakes and punches he self and head but things when he angry or upset I also find this hard to deal with. He also has had a view other issues, there were looking at asd but now are not sure what he has.

Aug 21, 2013
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im from hastings
by: Anonymous

hi no how u feel my 5 yr is the same he has a big obsessions with sticks and jumps up and down he nick name is tigger he also when he gets upset smakes and punches he self and head but things when he angry or upset I also find this hard to deal with. He also has had a view other issues, there were looking at asd but now are not sure what he has.

Aug 20, 2013
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To 'anonymous' August 20th
by: Roger D. Freeman, M.D.

I doubt it (autism) unless he relates poorly, avoids eye contact, etc. Lots of kids we see do what you describe when they watch their favorite video(s).

Aug 20, 2013
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help!
by: Anonymous

I have a 3 year old son does the flapping and jumping in place when he watches his Disney movies but never head shaking. He started to figure out how to jump and turn at the sametime in place. Now he's starting to clap his hands alot. I just don't know if this is an early stage of Autism?

Aug 01, 2013
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My 9 year old girl
by: Wolfe

Omg this is so great to find other ppl/ parents going through the same thing my 9 year old girl douse the same thing but she shakes her head really fast side to side n she makes this sound like a gurgle she use to have seizures but has been seizure free for a few years! We have had her to 3 different states to Nero n genetics n no one knows why n what she has. It freaks me our when she douse that thing with her head! The doc say she has add n i sigh. A weaver so sge could get help and n school! she dont gave pdd but i sign a waver so she could get help! she is a little delay but she reads at her grade level she reads better than kids her age she smarter than most adults when it comes to food or cooking lol! Thanks to all who have shared

Jul 19, 2013
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Hand flapping
by: Sel

Thank you Amanda. I really try so hard to play with him and I talk to him non stop I push him so much to say words and repeat after me and ask me when he wants something. I usually don't give him or do anything until he will say it. I use trampoline that helps him little but If I would let him jump on it non stop he would. Mostly he just can't control his body when he dose calm down than he would respond and listen and talk, but that dose not least long. He dose not have sleep problems eating problems. He can dress him self, eat by him self. Dose not have any motor problems. To me seems like nerves system that is making him move non stop. I hope they give me something when we go for the evaluation because I worry so much.

Jul 19, 2013
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To Sel below
by: Amanda

Hi Sel
You don't have long until your evaluation in August so try to let things wait until then. Your son does seem to have lots of autism traits, and I'm sure the evaluation will give you some diagnosis you can work with to get the help he needs.
Until then, try really hard to engage him in playing with you, there must be some things he really likes. Eg if playing with blocks- make lots of comments during play with him- eg you're building a big tower. it's so colourful. And encourage all of his communication with you. Give him time to do his run in circles thing inbetween playing with you.
Goodluck

Jul 18, 2013
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3.5 year old running in circles flapping
by: Sel

My son is almost 3.5. We still don't know why he is the way he is and waiting for evaluation in Aug. Big problem that he has running in circle and flapping his hands at the same time, but for long period of time and most of the day. He is smart he knows his abc numbers colors shapes he points when you ask him where something is he uses words but has a hard time putting sentences together. He also screams a lot when I try talking to him or ask him ?'s. He is potty trained and asks for it. I been trying everything to make him stop running in circles and flap like massaging his body get him to draw puzzles but he dose not play with anything he dose not care about toys and if he dose play it would last few mins. he also can never stop moving his legs and arms. Maybe he has to do it but its just non stop thing, and when he dose it he will not react to anything. Anybody has any suggestions on what could help him stop running. Another thing is he is not social at all he will not play with his sister or other kids. I have been so stressed lately I cry everyday because I feel like I cant help him no matter what I try doing. I worry about him getting older going to school and will he be able to do normal stuff. He never stops and makes me excused every single day. Dose anybody have anything that I could work with.

Jun 26, 2013
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by: Anonymous

I am a 23 year old male headed to law school at UC Hastings in the fall. Before that I studied political economy at UC Berkeley. The only reasons I bring those up is that I want to prove that you can have SPD (of you want to call it that) and still be happy and successful. I still "flap" as my family and I call it, but only when I am by myself. In other words, I can control it. It helps me cut off all sensory input so that I can be in my own world, kind of like Inception lol. When I was little (until 5th grade really) I would go on my swing, close my eyes, flap my hands behind my head, squinch up my face, and point and wiggle my toes. It was something about swinging that really helped me get into my head. I have a lot of friend who do funny gestures with their hands (obviously not the same scale as SPD but still).

I hope this helps; my point is that you can still live a happy life.




Jun 15, 2013
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18yr male with similar symptoms
by: Anonymous

Im told that ive always been an intelligent, artistic, creative child but Ive had this daydreaming/ shaking problem for as long as i can remember.
I get excited about things and begin to daydream and enter some sort of "trance" i guess you could call it, except im almost completely aware of my surroundings. when this happens i get extremely worked up and my right hand flaps or shakes almost uncontrollably.
when i was younger my parents would catch me doing it and stop me by calling my name or tapping me to get my attention. when they started to ask me about it i realized it wasn't normal and began keeping it to myself as much as possible. my parents asked a few doctors and i remember doing a weird test where they stuck a bunch of those little sticky pads with wires connected to a computer on me, and told me to go to sleep? it was one of the MOST UNCOMFORTABLE situations of my life!. if my symptoms sound like your kid, leave them alone, they'll be just fine. DONT GIVE THEM PRESCRIPTION DRUGS!

By the way, over the years i have found that smoking marijuana can help with my problem and am now a legal patient, it helps me relax and focus. i failed through middle school because of attention/focusing issues but started smoking in high school and graduated with good grades. although im sure most of you dont want to be giving your 7 and 8 year olds medical marijuana

May 21, 2013
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Last question about which clinician...
by: Roger D. Freeman, M.D.

Because knowledge of stereotypy is so spotty, you take your chances going to a clinician, who may misdiagnose your child. Since most children eventually make their pattern private, in the long run it may not be a problem. But many teachers think it's autism and may need a correct diagnosis to dissuade them of that. I hate to be discouraging, but that's the way it is right now. Knowledge is slowly improving, however.

May 20, 2013
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My son, grandson, and granddaughter have these characteristics
by: Anonymous

My son is 27 that has exhibited some of these characteristics all of his life. When he became excited he would wiggled his fingers, make facial grimaces and yell out. We always thought it was just his quirky way of showing excitement. He describes himself as being able to contain the movements but does them more in private. He struggled with ADD in school but is great at his job and being a dad. However, his son is 6 and has more pronounced movements with his arms. He has ADHD, struggles some in reading but is extremely creative and has a really funny personality. Both he and his dad are very social and are very well liked by everyone.

I worry about the right way to approach him about his arm movements. He jumps around holds his hands up in the air and his hands look like crab claws opening and closing. His sister is just turned one and now shows signs of the same movements. I am assuming it is hereditary. Dr. Freeman I would love a copy of your paper sent to rcret345@comcast.net Should the children be taken for a diagnoses to help them in school? What kind of doctor should they go to for a diagnosis? Teachers have expressed their concern for his movements.

May 16, 2013
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About relationship to synesthesia
by: Roger D. Freeman, M.D.

No, I've not encountered any unusual frequency of synesthesia with stereotypy, but it may be present without it ever being mentioned, of course...

May 16, 2013
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Synesthesia
by: Steven

Dr Freeman,

I've commented below and described my hand shaking and jumping as being like a dynamo for my imagination. I've just found out that I also show signs of Synesthesia, believing the way I thought was the way everyone perceived things. In you studies have you came across a link by any chance?

Steven

May 16, 2013
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Sirena
by: Roxane

Our sons are so similar in their behavior. Mine also likes exact answers to certain things, like time. He used to love trains, as well.
Last year his teacher told me that he sometimes didn't seem to be listening but if she asked him something he would know the answer. :) It really is nice to have someone who relates to you, especially when it comes to your children.
The biggest difference I notice is that my little guy feels bad if he doesn't have anyone to play with. He told me yesterday that no one played with him at recess, but I think he always wants them to do what he wants to do, which at this time, is swinging. Not that many boys want to do that at this age anymore. I encouraged him to join in with his friends in whatever game they are playing today, so we'll see what happens.
Thanks for your responses. It's interesting to see the similarities. I just wish I knew if there is someone I should have him see to help with some of his "socially unacceptable" things, like his jumping, and noises.

May 16, 2013
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A cautionary statement - Response
by: Sirena

Thank you Dr. Freeman.

this is the main reason I have not done anything about my son's behavior because other factors in his behavior are normal. And are really not interferring with his daily life.

My concern was more on the social side and thought that maybe there might be something there.

I will definitely keep monitoring his behavior and if needed have been evaluated.

thank you again. These statements have cleared a lot of confusions.

May 15, 2013
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A cautionary statement
by: Roger D Freeman, M.D.

After reading these recent entries, I would like to pose a caution: both stereotypic movements and sensory diferences that are frequently described - and also sources of concern at times - are common in both typically developing children and in children with developmental problems. Therefore their significance has to be assessed in conjuntion wih all other factors, not seen as necessarily a "thing" or disorder in themselves. (That is in itself a tall order to obtain, and to make it even trickier - the factors involved may change with further development and engagement with the world.)

May 15, 2013
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Response
by: Sirena

My son is also funny and artistic. He loves science so much too - he would come home with an experiment and would try to do it on his own and we go shopping for items where he would be wanting to create things. he loves it. and his science teacher says that he is one of the students that participates more (he only participates during subjects he loves).

The school hasn't asked me to get him tested because his teacher says it is more of social skills than anything else. But he does not seat still in class she says. and he seems to always be in his own world. However, when she asks him a question about the topic she realizes he is paying attention to her in his own way because he always knows the answer. so he is paying attention but needs other stimulation - I think.

My son also doesn't seem to notice that it is not quite right what he is doing until a kid points it out. I try to let him do what he wants at home and in the car and even at birthday parties. People would say - why doesn't he play with the others. and I just say, he likes playing on his own. I don't see a problem. However, I'm sometimes curious to know if I'm missing something when these other parents and other kids ask me about his behavior.

He loves maps and weather. And for some reason, he doesn't like it when you are not EXACT about an answer. For example, he would ask me what time is it? if I say its almost 5pm or 5:30 - he would go, but mami what time is it really - so I would have to say its 5:50 or 5:32 to be exact. Then he is satisfied. he would even look at the clock himself just to make sure I was right.

sometimes I think he just wants to be right and exact and well organized about everything.

Something someone mentioned previously about trains - when he was younger (well maybe still now) - he loves trains and he would line them up by size, and color and they had to be just right on his shelves or on the train table. That comment made me sigh as I was relieved that he was not the only one.

Thank you again for your response - all these responses with similar experiences is making me feel better.

May 14, 2013
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Response
by: Roxane

Serina,

I also feel my son is very normal other than his certain behaviors. He is funny, and artistic, and just enjoyable to be around. Something that I forgot to mention that he does is jump around and flap his hands when he is excited about something or imagining something. That is why we had him tested for Asperger's. His teachers wanted him checked for it, too. What is interesting is my son doesn't think there is anything strange at all about his actions. :) I'm curious, does your son have any interest in maps or weather? Mine has taken an interest to those things lately.

May 14, 2013
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My Son Too!
by: Sirena

Thank you so much 'Anonymous' for your response. It really makes me feel better to know I'm not alone. I have never looked into him being sick or anything since he has always been very smart and can talk to me like a normal person. I don't see any behavior that seems odd except that he is a 'kid' that likes to move and be doing something all the time. But recently I do see him playing a lot alone and felt bad for him because in school is hard.

the lunch staff tells me he is always alone and plays alone. He starting to make friends by talking to them after school but no 'best friend', which is hard for me to understand since I know how great he is.

he was picked in school last year but now things are better for him. Kids do look at him like he is 'odd' because he wouldn't even play with them at birthday parties. He won't play with any kids, he plays alone.

Hopefully we would have an answer. Thank you.

May 14, 2013
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My son, too!
by: Anonymous

Hi, Sirena, I can so relate to you and your son. I have an 8 year old son, he will be 9 in a few months, who sounds just like your son. The only thing that sounds different is he isn't clumsy. I've had him checked for Aspberger's or anything else they could come up with but we haven't gotten any answers except that he is "quirky". He has a great imagination, too, and is very smart. He has friends but tends to be "shy" around people he doesn't see very often. I hope that there will be an answer for us and some help for our children soon. My biggest fear is him being teased because of his odd behaviors. I just wanted you to know you aren't alone, as you can see in all of the other posts, as well.

May 14, 2013
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forgot to add in my last post
by: Sirena

My son is also a very picky eater (I can name in my 10 fingers what he would eat).

he is also very clumsy and always falling but loves to run and move.

May 14, 2013
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talking to self, imaginary mind, repetitive movements
by: Sirena

Hi - My 9 year old boy has always made very sharp movements. Here are some of his behaviors:

- running from one end of the house to another, for nothing
- talking to self - making different types of sounds (he says he just has a great imaginary mind)
- he says if only I could see his imaginary mind - he says he makes great stories and tries to play them out.
- he takes an object and makes them move a lot (i thought he was just playing).
- he is always putting his hands in his mouth
- he doesn't socialize well - we think he is shy but can be wrong
- he plays on his own a lot - he is an only child
- he lowers his head when meeting someone - no eye contact - and even when saying hello to a family member - at least until he has seem them for a long time.
- he is very smart - he is great at math and science
- he makes great things with blocks - he loves to build
- Many times on the ride home, I would notice him making sounds with his mouth (like blowing up sounds) and then move his hands a lot in his lap - he does this a lot.

Please someone help me and let me know if i should get him diagnose for something. Anything would be appreciated.

May 11, 2013
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i need help too
by: Anonymous

my son is 8 he use to shake feet baby i thought hes just excited but as he grows he doing more .like jump all time and get lost like in space.he answer like shut up.leave me alone.he shakes and twist fingers on his thighs.they just tell me energy but too much ,children ask me why i say we dont know.

May 05, 2013
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PANDAs
by: Anonymous

Did Your childs hand flapping, jumping and head shaking start "out of nowhere"? Where one day he was fine and the next you notice these behaviors? I would get him checked for PANDAs. ASAP! If your Dr doesn't know what PANDAs is or says he doesnt believe in it...then get a new dr. It can be cured with antibiotics. It's a strep disorder.

May 02, 2013
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Flapping hand with mouth open
by: JessicaB

Hi everyone,
I am a young single mother with a 21month old son. I recently have been paying a lot more attention to the things he does. When he was younger he used to say small words like "mama, yes, no, and bye" now he's doesn't say not one word but ouch. All he does is grunt and point when he wants something. He also flickers his fingers with his mouth open when he's excited or is focused on something. I'm not sure what this is but I am starting to get really worried. I called the doctors and she is sending me to get him evaluated. My son is very smart he understands and listens to everything I say. He very outgoing with other kids and also very loving. But if anyone has any advice on what this can be I would really appreciate it.
Thank you

Apr 28, 2013
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Occupational therapy
by: Kristi

This is exactly the way our three year old son is. We too thought at first he may be autistic but because he is social, our doctor wouldn't diagnose it. He sent us to a group for children with developmental delays or issues because he was behind in his language development. Through this network, we were introduced to a speech therapist as well as an occupational therapist who work with our son on a weekly basis to get him ready for school integration. If your son is anything like mine you my wonder how in the world he is suppose to sit down and enjoy reading circle or such! Our occupational therapist has been a wealth of knowledge in helping him find ways to work on his sensory needs! You should really look in to it!

Apr 28, 2013
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my 4 yr has obssens with sticks and bouncing up and down on the spot with he stick
by: Anonymous

My 4yr old has a strange obsession with sticks he can't just have eny old stick he got to pick it himself and won't let me chuck them.he then jumps up and down on the same sport for hours on end making sounds he looks like he of in he own little would.its starting to cause issue at school as he goes of in he own little would with a stick puting it in the air as he jumps.he flickers a lot dosent stay still for eny subject they end up Useing a egg timer to get he attention and then he of again.but yet I am struggling to get eny help for him help

Apr 20, 2013
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OCD?
by: Thanks

Hi,

I was tired of this...
I do daydreaming, mind wondering always. Specially sometimes if I got something like a pen, or toothbrush I do shake it and by a little look at it I go to trance. Its a relief it feels good but the problem is it makes me (my mind) tired, so tired, it also effects my brain in classes in college , I cant not think on paper and in class. I feel so sleepy in classes, but I can well go deep thinking just when I shake that black and white think in my hand! I was(maybe am) so intelligent with a little study I can have good grades but I can not study, study is so hard for me because even in the morning if I try to study I feel goddamn sleepy (if I not go to trance and day dreaming) . I feel real sleepy if I try to sit and study, that's not just a fake feeling that is so real. I think I loose so many years of my life right now... I'm 26 years old although I was one the best when I got to college(I was always highest grades student in school) but I just have so much problem there in college right now, why? because I just can not focus studying! my college will be finished this semester... I go find job meanwhile I was in college because I just feel disappointed in study and I'm just continued that so I don't regret in future.

I do the shaking items in front of my eye from when I do remember (5 years old maybe). I'm tired. I do that now very rarely but the trance the day dreaming the mind wondering is still with me. Just that pen is gone may be.

I did go to a psychologist some years ago, he diagnosed OCD for me but I do not have OCD I think, I never have read these things I read here. You guys (some of you) have the exact problem that I have had. What should we do?

I tried a psychologist, He diagnosed OCD for me. Give me Fluoxetine and Clonazepam, Any natural good substitutes for Fluoxetine and Clonazepam? I don't want to use these drugs, because I want to find something natural, maybe change in foods and nutrition or even any change in lifestyle first.

I decided to do study on this case, not because of myself but because of helping other people too, so they do not suffer that much I have suffered from this simple life ruin problem.

sensory.disorder.stereotypy@gmail.com is my email address, for talking about this issue.

Any help for me? Please provide me for you any little things that worked. I find this page in Google search when searching my signs. I was unable to read even 10% of the page right now it was too long but I will read it soon ASAP, Right now I am just so excited that I find out there some other people there that feel the same what I feel. So excited right now...

Apr 17, 2013
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Taking away recess
by: Anonymous

Willow
Your son should absolutely NOT be kept from recess. He does need to run off some energy. My question to you is "why isnt he diagnosed?" They can't pinpoint a diagnosis or you have not spoken with a Dr? Diagnosis is so important because your son can get the help he needs if he has one. Our teacher took recess from my son as a punishment but I spoke with her and explained the problem. She now has him write sentences after school. It is up to us to advocate for our kids. Does your son have true SMP or is it a spectrum disorder? It makes a huge difference for the child to know what is causing some of the behaviors so they don't think they are bad and always being punished.

Apr 17, 2013
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SMD - withholding recess as punishment in school
by: Willow

My son is not diagnosed but has always exhibited these symptoms and as of age 7 they have not begun to subside. When he gets in trouble at school (not necessarily related to SMD) they withhold recess as a punishment. I'm concerned that he needs this time for physical activity and that without it, his need to bounce and shake his hands up and down will increase when he is in the classroom.

Is there a relationship to the amount of physical activity a child gets (or does not get) to the frequency of thes stereotypies?

Apr 11, 2013
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Bouncing
by: Anonymous

I am delighted to find this page! My 14 year old daughter has had these behaviours since a young age, flicking things to and fro, twiddling her fingers and bouncing like Tigger for half an hour at a time. She is also being assessed for Asperger Syndrome and has OCD. Her bouncing now causes quite a disturbance to her life, as it prevents her from getting on with schoolwork and makes her late, she seems to get lost in a trance of daydreaming while doing it. She is able to control it so it is only when there is only her family at home. Unfortunately it is a very loud and disturbing habit, which is bothering our neighbours, particularly at 11.30 at night! Is it likely that this bouncing is more in connection with her possible ASD? Thank you for your help.

Apr 01, 2013
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To Cyndi
by: Roger D. Freeman, M.D.

SPD is not a DSM-IV diagnosis, and will unfortunately not be in the forthcoming DSM-5, either. Therefore insurance companies will not recognize it.
SMD is a DSM-IV-recognized diagnosis. There does not appear to be a very robust association between SMD and sensory peculiarities (lots of other kids with other problems, or with otherwise typical development, may also have these), so that an SMD diagnosis shouldn't validate coverage for OT therapy (as far as I know, since I'm in Canada, not the USA).

Mar 31, 2013
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To Roger D. Freeman, M.D.
by: MP

i saw Sensory Processing Disorder mentioned in the comments, found this page http://www.spdfoundation.net/about-sensory-processing-disorder.html
and i can relate to a lot of the things described, like as far as eating i literally cannot eat things like certain vegetables and coconut, and when i eat rich chocolate and when i first start chewing a piece of very minty gum, it makes my throat swell, then goes away in a few seconds after the flavor starts to go away. i was diagnosed with depression, anxiety, & anger issues three years ago and have always struggled with school my entire life, i knew i was slower than other students, but do i actually have SPD? i also have the relationship issues, and i've never been in any part of group. i work by myself at my job so it doesn't affect me there at all. my email is michelle_roxy_21@hotmail.com thank you for helping me figure this out.

Mar 31, 2013
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To MP Facebook group you may find helpful and Dr Freeman quick question
by: Cyndi

To MP you may find Facebook group for Motor Stereotypies a good place. It's been very helpful to me. My daughter who is 4, has been diagnosed with stereotypic movement disorder, which may be similar to you. I had her tested for everything to rule out autism which they did. great relief! The movements are her main issue, no problems with cognitive, social or communication skills. She does have sensory processing issues, which are affecting her and she has poor fine motor skills so we go to occupational therapy which is a big help for both of those issues. But the actual stereotypic movement disorder is not going to significantly affect her, except for learning how to tell people about it, she can't help it, it's just part of who she is. And hopefully, she will learn to have a strong self esteem and just deal with anyone who is negative about it. Anyway, check out the group, they are excellent.

Dr. Freeman, do you know why many insurance companies do not cover sensory processing disorder diagnosis? I'm still hoping I can get more coverage (over the 5 visits we have had so far for developmental delay code) for occupational therapy based on Stereotypic movement disorder classification which is on DSM IV for diagnosis codes. But my insurance says does not cover sensory processing or learning disorders,

Mar 31, 2013
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MP's questions and concerns (March 25th)
by: Roger D. Freeman, M.D.

I don't think you have to see any specialist. And if you do, many specialists wouldn't know what to tell you and might cause more confusion, since they haven't been trained to know about this.

There is no connection with Parkinson's. It seems that your problem is mostly anxiety and confusion about stereotypic movements, which often start in early childhood and persist privately, as you describe. Many writers here have described the same thing, and if you go back to earlier entries, you will find some similar descriptions and discussion. If you want to communicate with me more, you can leave your email address and I'll contact you.

Mar 31, 2013
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Parent
by: Anonymous

My son flaps his hands when his video games get intense. What is happening? He has done this for many years.

Mar 25, 2013
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i believe i have this same thing.
by: MP

i am a 19-year-old girl. i've experienced what you said since i was very young, probably since i was in diapers. my brothers made fun of it so it was something i continued in private. i used to jump around in my room when i was younger, flailing my arms and completely dazed like daydreaming, but very alert at the same time, so if anyone were to call my name or i heard someone coming near me i'd stop because it was so embarrassing. i mostly did it when i was deep in thought or felt a strong emotion about something. if i came up with an idea in my head i'd just do that and daydream. when i was probably 12 or so i stopped jumping, and limited myself to hand flapping/arm flailing when i'm by myself sitting in my room. the issue became so embarrassing i put a lock on my bedroom door to prevent anyone from knowing i still when through that embarrassing childhood habit. i wish i understood why it occurred. but this is honestly the most open i have been about my disorder in my entire life, my family doesn't know i still do it, and i've never talked to a doctor about it for fear of them not even knowing what it is. the only real health issue i have is an over-active thyroid. i was a little slower in school but was never put on any medication, and was never checked out for any mental issues. i'm extremely creative, though. i'm not sure if any of those characteristics have anything to do with my disorder, but i guess it doesn't hurt to add, who knows, maybe someone else can relate. i would love to understand this disorder more, please someone, anyone comment back and give me advice on what i should do, what kind of specialist i should see, or if it has possibility to progressing to like Parkinson's or something. thank you.

Mar 19, 2013
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Video game
by: Anonymous

Hi Dr. Freeman,

My son is dx with motor stereotypies. He normally shakes his hands, makes facial gestures, and sounds when engaged in creative thought. He is 4.5 and has already shaped his behaviors to be mostly done in private. My question is this- he recently got a handheld video game and has been telling me that playing his game can be a way for him to have his "sillies." "Sillies" are a name we have given his behavior. Just wondering if you have come across this type of explanation from other children along the way. Thank you in advance. Jen

Mar 19, 2013
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March 18 "anonymous"
by: Roger D. Freeman, MD

yes, I'll send you the paper. However, I can't make a diagnosis on someone who isn't my patient and available to have a full history taken and be examined. Remember: repetitive motor patterns can have multiple causes and factors involved, each needing consideration. Fortunately, in most instances the children turn out OK, anyway...

Mar 18, 2013
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dr. Freeman
by: Anonymous

Can someone please email me a copy of this report? My son is almost 6, about a year ago he was flapping his hands and stopped. Since then it has started again for about 4 weeks. It started with hitting his hands against his legs, then jerking his chin to his chest and now he is jumping a lot. He is social, very active with sports, and he is right with the other kids in class as far as learning. He tells me he doesn't know why he is doing it, its starting to happen excessively (for example, when he plays in hockey games). I am panicking and don't know what I should be doing? My email is dls948@yahoo.com

Mar 06, 2013
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Adhd?
by: Lisa

Can anyone explain what the differences between ADHD and these other symptoms on the spectrum?

Mar 06, 2013
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Worried Mom
by: April

Dr.Freeman, can you send me a copy of this report please ajones81879@yahoo.com ,I am worried about my four year son whom has many of these quirky ways .Thank You

Nov 30, 2012
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Ava
by: Anonymous

Thank you Ava. My guess would be more excitable thinking would occur after more sugar consumption... I haven't tried to change his diet and probably won't. The only thing i notice is large stools that clog the toilet but I dont think his diet is problematic... But could be wrong. I dont think the mivements are anything but imaginary play enhancement and obviously feel relief in his healthy blessings. The hardest part for me in the beginning, was simply not knowing what was causing the movements and assuming they would be constant. Thanks for sharing!

Nov 30, 2012
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Reply to Jen
by: Ava

Hi Jen
My son is 4 and we've tried gluten free for about 6 months now. I wouldn't say the movements have changed. But we've noticed he's much more calm and his stomach isn't bloated so we're mainly sticking to the diet- its really easy now and the whole family eats mainly this way now.
We saw a natural therapist who checked all his blood levels and we have a specific multi vitamin made for him - if he misses a night of this we notice increased movement, also after he eats sugary things.

And yes our son uses his movements in imaginary play - he tells us he is thinking.
Over this year he has much more control and is gradually only doing these movements in a private room - which is what dr freeman said would happen.
Ava

Nov 14, 2012
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School intervention for CMS
by: Anonymous

We received a diagnosis of complex motor stereotypy for our 7-year old daughter this past summer, with "classic Aspergian traits", but not enough to put her on the spectrum. We don't want to put her through more assessments/evaluations with behavioral modification therapists just YET, and was hoping she'd have a good 2nd grade year. But her teachers are complaining about her movements distracting her from lessons. She shakes objects in front of her eyes, "making the move", and even talks to them. She's perfectly normal otherwise, a "high flyer" academically, in fact. But she misses lessons altogether from engrossment with her movements. The teachers want to intervene. How can they do this without hurting her self-esteem?


Nov 11, 2012
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?
by: Anonymous

Dr. Freeman or anyone else that may be able to answer this-

My son has motor stereotypies (shakes his hands during imaginary play). I know he can control and enjoys it- so I am not concerned. I am curious though... the behaviors are similar to autistic behaviors- I know they are not but I am wondering if research on autism would be open to the behaviors as imaginary play as opposed to stimming. Have you come a cross any research or arguments that support this thought? Also, I am wonderng if you or anyone is aware of gluten free diet minimizing these behaviors. Is there anyone that has tried this and can speak to this? I don't mind my sons behaviors but want to learn more about stereotypies in general. Thank you! Jen

Nov 03, 2012
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Autistic spectrum disorder
by: Anonymous

My son is 11 now. He is social and imaginative just like your son. Since he was a baby we noticed he'd flap his hands when concentrating or excited. He would also walk on his toes and sometimes rock. When he was young he would not always respond to his name. Sometimes he will act socially awkward but not too bad. He has these moments where it's like he locks down and u cannot reason with him cuz he's so focused on one thing and it'll take an hour to wait before talking him down. Jonathan has just this last year been diagnosed with autistic spectrum disorder. They have found that there r some kids who function very high with many of the autistic symptoms but not all. I would get a second opinion

Oct 31, 2012
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SPD information
by: Anonymous

Hi Dr. Freeman, I read your study. I would also love to read the new summary paper if you wouldnt mind sending it to me.
Thanks so much!
Jen Goodman
Goodman_jenni@yahoo.com

Oct 25, 2012
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My son shakes his arms
by: Worried mom

I live in Newfoundland. Have three boys. My. 4 year also does the same type of things. Arms flaps, face squinting when excited. I don't know why he does it either. Wish I could help but I'm lookin for answers as well. He is a very smart boy and no problems socializing. I'm hoping it won't effect his printing and school work. He can't print letters yet. But can draw simple pictures.

Oct 25, 2012
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e-amil address
by: Anonymous

Dr. Freeman - could you please e-mail a copy of your information?
kimdaum1@gmail.com
Thank you !

Oct 13, 2012
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Picky eater, modified barium swallow test
by: Cyndi

To the person who just posted, thank you so much. That modified barium swallow procedure is the one the speech therapist said she should have. I will definitely have it done. If it is acid reflux that would be such a relief. She did some issues when she was a baby and was on Alimentum until 12 months. You know, she seems to choke on milk and apple juice frequently and I could not figure out why if there is some anomaly in her throat, why would a liquid be worse than the foods she does eat. Thank you so much.

Oct 13, 2012
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Acid reflux
by: Anonymous

Cyndi, the signs your daughter is showing (choking,'vomiting' which is probably quite often just undigested food spit out, and severe avoidance of foods other than a select few)sounds exactly like my son, 4 years and two months old. After going through this for most of his life (which I hate to admit), his pediatrician referred me to an ENT because his tonsils and adenoids were quite inflammed, and kept fluid in his ears, causing frequent infections. I told the ENT about the eating problems, and he suspected the cause of the inflammation was actually acid reflux. I took him to a pediatric gastroenterologist, they did a Modified Barium Swallow (which was indeed challenging, but we got through it!)they discovered that he does have acid reflux. It causes inflammation all the way up the esophagus to the back of the throat, causing the gagging and choking sensation, along with occasional vomiting that is not due to illness. If it happens often enough and for a long time (like my son) they will associate eating foods with this discomfort and refuse almost everything. They tried Zantac for a month, which didn't help. They switch him to Prevacid last month and it has stopped the choking, gagging and regurgitation episodes, at home and even at school. Now my problem is overcoming the psychological fear of foods, because it has gone on for so long. I'm trying to find a speech therapist/pathologist that also does feeding therapy, as his speech was a bit delayed from hearing loss due to constant ear infections which is difficult in my area. Sorry for the long story, and to this moment I don;t really know if my son has any sensory processing disorders or not, I just wanted to let people know that acid reflux can cause a series of problems in children. Hope this helps...

Oct 04, 2012
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Picky eaters or sensory processing disorder
by: Cyndi

Hi. Just a comment for any of you asking about picky eaters. My three year old daughter has so far been diagnosed only with stereotypic movement disorder. We are having a lot of testing done in a month when we go up to Minnesota. However, today I was finally able to get her an evaluation with a speech therapist for speech and feeding difficulties. She tested at a five year old level for listening and expressing, so they said no sense going higher with testing and moved on to feeding. I am much more concerned about the feeding issues than the hand flapping (and now kicking with one leg) that usually accompanies the flapping.

Anyway, the therapist cannot say for 100% definite she is not having a real feeding issue without having a barium procedure (I forget the name). But she says she is pretty sure it is just picky eating. I was almost sure she had a sensory integration disorder issue with feeding, so I am relieved I guess if it is just pickiness. Anyway, she did say a child dietitian should be able to help me with ideas to get her to try more foods and get her to eat warm/hot foods. Right now she won't eat any meat, poultry, fish, or anything soft (ice cream, pudding, yogurt, whipped cream, cake frosting/cake/cupcakes, or anything like pizza, lazagna, hot dish. A kid who wont et ice cream, cake, pizza? Basically she eats pasta, cereal, poptarts, chips (when i let her once a week) fresh fruit, greenbeans and carrots. That's it every day for a year and half. At least she drinks water! Well, I just wanted to post for the other people with a picky eater. I am getting a referral from my regular pediatrician to see the dietitian at the therapy center.

Oh, my daughter does frequently cough (every time she drinks and eats, coughs or chokes at least once during the 6-8 oz drink or meal. always ends in eyes running and usually a frustrating meal for both of us. And i think she also feels confused too, has a look like she is.) She does vomit,I think a bit too frequently, 3 times a week maybe average? But I don't know what is normal. Well,I guess this barium procedure is something we probably need to do, but I can't imagine getting her to drink and eat foods mixed with barium at the X-ray facility. Just wanted to share because it might help someone else not sure where to go if they are wondering food picky eater or sensory processing. You can find out. By the way, the evaluation cost me $234 because I had not met deductible yet. I did not think that was bad at all. That was for the full speech and feeding clinic evaluation.

Oct 04, 2012
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4 yr old boy flaps hands,jumps and head shaking
by: Anonymous

Dr. Freeman
If you could please email me a copy.
Thank you.


gaby77jackie3@hotmail.com

Oct 04, 2012
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violent hand flapper
by: Anonymous

I am a nanny in williamsburg brooklyn and the little boy I take care of is now 5 years old. He does the hand flapping. Clenching his fist and talking to himself. He seem intelligent beyond a normal kid but what I have observed is his strong violent tendencies and ability to mask it sometimes to please his parents. He has great manipulation skills. He cries, argues violently and hyperventilate when he wants his way. As soon as the parent gives in he stops. He has a baby brother who in my opinion he hates but manages to hide it from his parents. He says things like 'I love my baby brother' and hugs him sometimes. The parents would ooooh and aaah and say that is so cute. Besides that he would hold the baby's head and squeeze it hard many times when he thinks no one is watching. He held the baby's hand one day and started pulling him by arm and spinning him across the floor. I cautioned him and told his parents but to no avail. I have seen him hold a little girl who came on a playdate down by her throat and started choking her because he did not want to play. I am afraid he will harm the baby.

Sep 20, 2012
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"Stimming," ASD, and stereotypy
by: Roger D. Freeman, M.D.

"Stimming" is used frequently but is misleading because it suggests stimulation that meets an unmet need, something not provided by parents or environment, when in many cases it's the overflow from the child's excitement or pleasure and is an enhancement. Anyway, it sounds like the "social anxiety" doesn't fit well as an explanation. Maybe the clinic there isn't aware of the positive aspects of stereotypy for some children. In my opinion clinicians are too quick to link one pattern with a specific other when there may be many links. That said, what's unusual about the pattern is that none of our kids with Stereotypic Movement Disorder jiggled an object; they only did something with their own bodies.

Sep 20, 2012
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Parents relax
by: Michael

I wrote my story several pages ago and subscribed to this page because I found it interesting to read the stories of other "hand-flappers", but I'm still bothered by the parents who feel they must fix the issue.

I'm 30 and a perfectly healthy, social, and smart person. Your kid will be too. Just let them do their thing and grow. After a while, they'll realize that the hand-flapping is kind of weird, and they'll stop doing it around others, even you parents. I don't do it in front of my wife or parents (and my dad has these tendencies, too). I've talked to them about it, but am still embarrassed to do it in front of them.

Reading some of the other stories reminded me of the screeching I do whenever I play(ed) video games in college. If the finish line was in sight and its neck and neck, I'd screech. If I was in a shooting game and new some dude was after me, I'd screech. Now that, I couldn't control even if I tried. I was just too excited. My roomates all thought it was hilarious, but I wasn't embarrassed by it. Perhaps because it was uncontrollable. The hand-flapping thing is controllable.

Anyway, parents, just relax. I understand you're worried because your kid is doing something that is abnormal, but it doesn't effect them at all. And by reading some of the stories here, you could say that your kid is likely to have above-average intelligence and an incredible imagination.

Regards,
Michael


Sep 20, 2012
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RE: Possible Asperger's
by: Anonymous

I hope you will post what you receive as a diagnosis. Our son sounds a lot like your daughter. We were given a diagnosis of complex motor stereotypy, and our son is als being watched for Tourette's as vocal tics accompany his movements.

Sep 19, 2012
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Stimming misdiagnosis
by: Anonymous

We just went through an intensive autism assessment here in NY - 3 days of tests for my 7-year old daughter, numerous questionnaires for me. My daughter is a "high flyer" academically. She read at a very early age, and continues to read prolifically. She's sweet and sociable, a little sensitive at times, but enjoys meeting people and playing with friends. At age 5, she started to "hand dance", as we called it, when she drew, which she did a lot. Always in her most creative and joyful moments, her free hand "danced". By the time she was 6, she was getting up off her seat and pacing back and forth a little while she examined a project carefully, sometimes even doing a little happy hop or two. This year, she's taken to holding an object about 2 inches away from her eyes and shaking it around a little, as her mouth quietly moves to some internal script, her free hand dances, and she bounces her feet or kicks her legs. Always when she does this, she's immersed in imaginative play alone or with someone else. She tells me that she shakes the objects to "make them move", that it's more exciting and realistic to her this way. She's still the upbeat, sociable child she's always been, with wonderful reports from teachers, and positive rapports with friends and family. Her need to increase stimulation just keeps upping the ante. We were fairly convinced that she had a smattering, at least, of Asperger's, as classic traits run in her father's family, and our daughter's traits seemed textbook (down to the lofty speech patterns, sensitivity, obsessing about subjects, etc.) I was told today, however, that she did not meet or even come very close to meeting all the criteria for Asperger's - that there were potentially "other factors" that contributed to her social struggles, at times, and that she "might benefit from some assistance", but wasn't autistic. While I wasn't looking forward to a diagnosis of Asperger's, I'm fearful they'll suggest social anxiety disorder, or something of the like. As I told them in every questionnaire and even provided as evidence in two videos I took on the sly, my daughter engages in "stimming" while perfectly at ease, downright blissful in fact, during exciting and imaginative play alone or with others. While she's sensitive *at times* with her peers, 75% of the time she's fine, and processes teasing from the resident schoolbus cad even better than some of her peers. While we took our daughter for an assessment of our own volition because we had concerns, we are absolutely certain that her stimming is not a result of social anxiety. To be fair, that's not what they've told us. I'm to wait a few days before I get the final verdict, but I'm wary. Is this stimming - the hand flapping, hopping, shaking objects, etc. during highly imaginative and creative processes necessarily associated with some kind of social malfunctioning?

Sep 18, 2012
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Would Love a copy of the paper please
by: Anonymous

I would very much like a copy of the paper please. Many thanks! KatieHanus@yahoo.com

Sep 17, 2012
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responses to two recent questions/comments
by: Roger D. Freeman, M.D.

Cyndi asked about allergies & colds: no relationship established on groups of children, but that doesn't rule out an individually different response; your "hoping" for a diagnosis of SPD and stereotypy seems a bit strange, because there's no strong relationship between one and the other (there is a weak association, but no evidence at this point that addressing sensory processing issues will change stereotypy patterns);

Anonymous asked about allergies and "oxygen" aggravating stereotypy: again, maybe an individual response, but no evidence yet for this (it is true of many children with tics, however). Stereotypy can have a respiratory pattern included, but there's no lack of oxygen from it.

Sep 14, 2012
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Allergies affecting stimming?
by: Cyndi

Hi. I just wanted to ad that I have also noticed an increase in stimming with allergies and colds. I've also been wondering if any connection. We are seeing a neurologist at Gillette in Minneapols in November where I am hoping to get a diagnosis for sensory processing disorder and possibly CMS (complex motorstereotypy aka hand flapping). Not that I relish the diagnosis, but just so I can have a direction to start therapy for my three year old. She started daycare for socialization reasons a month ago and hand flaps, kicks as much there as at home. She already has caught two colds, so has been confested at least 2 weeks of the last four weeks. The worst part is though they can't get her to eat or drink anything, as she will only eat very few items and only if certain temperatures. Food must be cold, beverages cold.

Sep 14, 2012
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Allergies/Oxygen's role in motor stereotypy
by: Anonymous

Dr. Freeman,

My son, 4.5 is highly verbal and intelligent, and very social with adults, but has a hard time socializing with his peers (I think largely because he gets too excited during the first few playdates interact with the child). While his flapping and bouncing are better than they were a year and a half ago, I have noticed a recent uptick during what I believe to be the beginning of his worst season of allergies.

I am wondering if the congestion might some how be contributing to his increased motor stereotypy. In no way am I suggesting that it is the cause.

He doesn't take any medication for the allergies today, but I notice when he gets the blank expression on his face for the time he does it, he isn't taking in any air.

Any insights you have would be most helpful.

Aug 31, 2012
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Grew out of it
by: Anonymous

My older sister used to do this, particularly when she was reading and getting interested in the story she would flap, flail and screech. She was also appallingly clumsy. She was diagnosed as hyperkinetic. This was more than forty years ago.

Her inability to control her noise and motions meant that she was frequently sent out of the classroom while she was in elementary school. Silent reading period was not silent where she was concerned. However her teachers understood that she was trying to control her motions and not doing it intentionally so she often either sat in the office doing her work, or sat in the hall, rejoining the class when it was time for things like instruction and discussion which did not over-stimulate her.

There was some trouble for her in junior high which started at age 11 and it was decided that she should switch schools because the first junior high expected a more rigorous level of achievement, so she went to one that had less exacting academic and behavior expectations although it was still an excellent school. This was a good thing because she was easily able to excel at the academics there so the teachers thought of her as bright an imaginative, more than as undisciplined and she did well and was a valedictorian.

Her assertive personality meant that she never suffered from bullying as a kid, and she was popular enough to be voted princess at her school's high school grad despite a wide range of eccentricities, such as wearing her hair in braids in a coronet on the top of her head and balancing her text books on top of that to carry them.

My sister went on to university and a series of well paid job in IT. About fifteen years ago she got a diagnosis of Asperger's Syndrome. She is still a little bit on the clumsy side and not what anyone would call a good driver, but the flapping and other motions wore off in her early teens and as an older adult she is now accepted to be intelligent, widely read and successful




Aug 28, 2012
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This is Amazing!
by: Julie

For years my husband and I have been trying to figure out what is going on with his now 7 year old son. All the things talked about in this thread are very simular to his activity. He bounces around for hours at a time, saying he is imagining. He flaps his hands when excited, almost looks like he is trying to fly away. Other times he clinches his hands and arms down and looks like he is baring down. We have had problems with him grinding his teeth, and sucking on his shirt collar. He is a very picky eater, I have never see a kid get so upset at dinner time. Sometimes he gets so upset about it he ends up making himself vomit. If he wasn't such a bright kid we would be worried. Everything else he does in his life is normal. Does well in school, makes friends easy, follows orders for the most part though he is mouthy. Thank you so much everyone for sharing your stories! And a big thank you to Dr. Freeman! If you have any suggestions on easier ways to inturduce new foods at dinner for a 7 year old I would be so very thankful!

Aug 22, 2012
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My 7 Yr Old son
by: Janet

I am happy to say he has a good teacher this year. When he has the urge to flap during work time he will just stand up do his thing and then sit and refocus. The teacher just lets him do it and leaves him alone. So far he is really enjoying 2nd grade without problems. His 1st grade teacher would always tell him to stop and say you can control this and need to stop. I think this is why he was frustrated more and acted up more in 1st grade. We will see as the school year goes on.

Aug 22, 2012
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to Ali
by: alex

sounds just like my son. Do you have any answers?

Aug 04, 2012
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My 7 yr old Son
by: Janet

I have posted here before over a year ago. My son will be starting 2nd grade. My concerns also has been the he would be bullied. This summer he has been in summer camp with children from ages 5 up 10. Some of the kids would ask him why does he do the had flapping and the facial grimacing. I asked him, what did you tell them. He said nothing. I just ignored them. I ask well did it bother you. He told me no. He didn't care what the other thought about his flapping. He likes to do it and plans to continue. I just love his attitude and his confidence in himself. He will be starting a new school next week. I'm just curious to see what 2nd grade and a new school will bring on. I forgot to mention his hand flapping to the summer camp teacher, because he couldn't sit still she made him write 20 sentences about his hand flapping. I then explained to her that he can not control easily. I always prepare his new teachers. He still gets in trouble for not sitting still during group or work time. Not sure how to get the teachers educated.

Aug 03, 2012
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Dr. Freeman's paper
by: Anonymous

This thread has so much great info! My 1 year old son was recently diagnosed as having SMD and I'm trying to devour as much info about it as possible to understand it. Dr. Freeman, I'd really appreciate a copy of the paper you mentioned. Email address is afilbert75@hotmail.com. Thanks!!

Jul 23, 2012
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answers please
by: Nicole

I have a nine year old son who paces back and forth and sometimes he just walks in circles with his attention focused on an object that he has inches from his eyes twisting with his hand hands . The object would be something he makes like a pencil with a big eraser stuck on the tip of it so he would hold the pencil and twist the eraser. I found one that he had made out of a screw driver and a clamp. I have thrown away a few without him knowing because I took one away from him one day because he didn't clean his room and when i did that he was so upset that he almost started hyperventilating. That's when I knew it was serious. So all day he is just pacing with his attention focused on this turning object. He is a very smart and active little boy.

Jul 09, 2012
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To Kim, my son does the same
by: MKB

My 3yr old does clenching, unclenching fist when he got excited since before 1yr old. Now he jumps around too and always out of breath when he does it. Especially he's imagining something, he is so out of breath after doing it.

I asked him why he's doing it. And he said, "I love doing it". He speaks two languages, count and read some alphabets, love to play with people, and I don't think he has any delay in development.

Now I and my husband are little worried if he get bullied at school because of the behavior. I'm telling my son that people might not accept when he does his little ritual because people don't always understand. And he seems understand what I'm saying. But I also am not trying to force him to quit the behavior since he loves it so much.

Jul 09, 2012
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I have a hand flapper too
by: ali

my almost 9 year old has behaviours very similar to all these described here, and has been like it since a toddler. Ive always put it down to just how she is, and have never saought any medical opinions. However, teachers and children are starting to notice and with senior school looming, Im concerend that my daughter will get picked on for being 'weird'.

mainly when shes excited or engaged in imaginative play on her own (been an only child for 8 years), she will shake her hands and lower arms as if they are wet and shes tring to dry them. Also her arms also go stiff by her side and she will flap her hands that way. She also clasps her hands together in front of her face, we call it her 'praying game'. Most of the time whilst shes doing this she will be talking to herself, although the chat is usually related to whatever game she is playing at the time, usually some made up game. she also has a habit of talking to inaminate objects, usually a door, door frame, wall, or window, with her face pressed right up close and her hands flapping/shaking. Again it seems to be some type of game. she used to hand flap watching tv but does nt any more.

we have discussed this with her numerous times, she does know shes doing it at the time but will stop when distracted. when she notices herself doing it, she will make herself stop. Shes very intelligent, very sociable, articulate and does well in school. she can be anxious,is sensitive is a worrier, and as a young child quite phobic about certain things.

I posted about this on a chat forum recently in response to another mums thread, and i was amazed at the range of diagnosises we were given for my daughters 'quirk'. these included autism/aspergers, tourettes, SPD, primary motor stereotypies and even hallucinations!

Id be interested in a professional opinion, not because I think theres anything wrong with her, more mere curiosity!

Jul 09, 2012
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Niru - June 7th
by: Roger D. Freeman, M.D.

This history suggests something other than Stereotypic Movement disorder, perhaps obsessive-compulsive. I can't tell you how to "cure" what I don't understand. He should have an assessment through his primary care physicain to the appropriate specialist.

Jul 09, 2012
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hand flapping
by: Anonymous

I have been shaking my hands since I was very young... and I am a perfectly normal 22 year old. It started around age two... i would often shake my hands or use a piece of string and shake it. I would often talk to myself and think of stories or adventures and basically just use my imagination to pass the time if I was bored. Today I do it when im bored or need inspiration to write a story or article...I believe it has made me more creative. I would just let your son be a free spirit and if it doesn't interfere with anything else in his life more power to him :).

Jun 30, 2012
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my son flaps like a bird
by: Anonymous

My son flaps his arms like a bird, runs around in circles barely speaks even though he has learned a good few words. He also shakes his head. He is 2 and half. He can be sociable but also can be shy. He has been to the hosp about glue ear but has to go back for more tests. But surely he wouldn't do all this from just having glue ear? Can anyone help who has been in similar position.

Jun 17, 2012
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New Query on Shaking hand and Rotating eyes
by: Very Tensed

Hi Doctor.,:

My husband is showing weird signs on shaking and moving his hand and keeps tapping his finger with .. Like if he is holding the cell phone he keeps tapping it with the finger. Also I have seen that when he goes to the cupboard to get any thing or even keep anything , he takes the object out > closes the door> opens the door again? keeps the object back and then gets it out..

He also gets kind of lost and rotates his eyes in a wierd manner.. I am really scared to see all this..

Please tell me how can I cure this.. This has been since he was a teen

Regards
Niru

Jun 03, 2012
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Pyroluria
by: Anonymous

No- pyroluria. http://www.diagnose-me.com/cond/C372380.html
Detected via urine test & to do with pyrroles attaching to zinc & b6- our paediatrician & psychologist & naturopath identified it in my son & he has wiggled his hands since 6 months old. He's on the supplements now so will post again if smd reduces or goes!

Jun 03, 2012
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Abby's question
by: Roger D. Freeman, M.D.

Abby,
Do you mean "polyuria"? It means urinating too often or excessively. No, there's no relationship we've seen, nor any papers we've come across.

Jun 02, 2012
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Dr Freeman
by: Abby

Hi - just wondering if you know if yours or any other research has investigated the presence of pyroluria & these movements?
Thanks Abby

May 16, 2012
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Hand flapping experience
by: Anonymous

My son used to do the same thing, mostly when visually stimulated. He was diagnosed at ~2 years old with SPD and some motor delays and then PDD-NOS when he was 4, by 5 the diagnosis was removed because he was always very social etc. but just had some "quirky" movements that were autistic like. He is now 8 and doesn't clap, flap or jump etc. anymore. He still has some sensory issues but with time we are learning how to deal with them. Good luck and enjoy your son. He sounds very hapy!

May 14, 2012
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To Onyedika
by: Anonymous

I agree with you a hundred percent! My daughter is 9 and hand flaps when she is happy or excited. It is one of our favorite things about her. Give it a name if someone wants but it is just part of who she is. She is aware of it now that she is older and just says she is getting her happy hands. God did create us each differently but we are expected to fit into a box in todays society

May 08, 2012
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For MW
by: Roger D. reeman, M.D.

It seems from your brief description that your son is pretty normal, other than the movements. Unless you have other concerns about his development, this seems like what I would call "ordinary" stereotypy that just hasn't gone away or become private yet. If there are other concerns, then that impression might require modification.
The fact that he doesn't like being 'taped' signifies to me that he is developing social awareness -- that's good!

-- RDF

May 08, 2012
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Sofiane reply
by: Amanda

Hi Sofiane
It sounds like it would be best to visit a family doctor to check your son.
Goodluck

May 04, 2012
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My 3 years old boy cant say more than 3 words
by: Sofiane

Hello, and hope somebody could help me,

My son is 3 years tomorrow, and i have been spoken with him just in Arabic,, my wife is Polish so he understand polish and arabic very well, and he can say 3 or 4 words in arabic, but he is very active, he does not eat mush just Chips, Jus, water, Noddles, Riz, Spagitti,, thats it, and he likes people he loves us, he is hugging, cuddeling even alot, and when i took him to register him in nursery, the woman there said he mite have Autism, so im very stress and nervous the wife too, but my son hes got imagination he is feeding the dolls, he is repeating the word broom broom which is i want to go in car, he is making eye contact sometimes, he is not interested in books stories, so im very confused if somebody could really help me ,,and give me some advices..

Sofiane

Apr 16, 2012
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Flapping at naptime
by: MW

To all, Thank you for taking the time to post. I can’t tell you how helpful and comforting it has been to find others in the same boat.

To Dr. Freeman My 3 year old son jumped in his crib from the time he could stand. From around the age of 1 he would jump at naptime until he fell asleep. At 18months he would no longer nap and just jump the whole time. For safety we moved him to a mattress right on the floor. After a short while the jumping stopped and he started walking around his room hand flapping, shifting his weight from left to right foot and sometimes jumping. At around the age of 2 we started noticing he would do it in his car seat and booster seat when eating. We showed our pediatrician a video and he didn’t seem concerned. My question…while my son does do this some when excited, he does it most during his “naptime” or when playing independently. Did you notice that in any of your subjects when you did your study? Also, though I do have video of him, he does not like me to tape him doing it and will change it to a more purposeful movement or stop it when I try to tape.

Family History-He is the youngest of 4 boys. Two of his brothers did quirky repetitive movements. One has stopped, one continues at age 8 but only at home. The 3 year old's are the most pronounced.

We have an appointment with a pediatric neurologist but can’t get in until July. Thank you for following this blog and adding your expertise.
Also please send me the UK paper if you can jmatt19@yahoo.com

Apr 04, 2012
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My Dad and Brother do the same
by: Anonymous

My Dad paces while flapping his hands and makes a noise like a bowling kettle- a pitched hiss, he does this when he is excited or on the verge of a tantrum. My brother does exactly the same but not when angry- he does it when he is pleased with something or relaxing. He would smack the back of his head repeatedly for 10 seconds, when he's in his room he holds toys soldiers and flicks them in his hand and makes a distinct hum for minutes at a time- the longest episode being half an hour. My Dad is 51 and my Brother is 17. They never do it in public, so it doesn't interfere with daily life, but strangers my be disturbed.

Apr 04, 2012
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Jen
by: Amanda

Yes thanks!

Apr 03, 2012
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Amanda part 2:)
by: Anonymous

He doesn't engage in these movements if he is holding any objects. I am least concerned with how his hands move when he is excited about something. I became more concerned with whether or not these movements were automatic ANY time he was not engaged in an activity of any sort. Through the year, I tried my best to gently bring his movements to his attention and also discussed alternative movements he might want to try along the way (clapping, patting knee, etc). We discuss how some things in life are meant to be private and as we get older we need to learn what we want to do in front of others and not. I want him to have the confidence and control of whether or not he cares if people see him or not. I often associate these movements with nose picking or using the potty because I really do not want to bring sole attention to them.

Clapping seemed to be the easiest however when he wasn't interested in doing it anymore I STOPPED suggesting it so as to hopefully avoid any negative associations he may have with his behaviors. I am so careful with my wording and discussions with him so I do not, hopefully, negatively impact his self esteem the slightest bit. My son is not delayed in any other areas and does not struggle any more emotionally that I believe any other typically developing 4 year old would. He and I refer to his movements as his "sillies" that he needs to "get out" and have played games( yes, I try my hardest to make things we do fun and not to seem out of the ordinary from other things we do or discuss together)like red light/ green light to practice starting and stopping the movements which is why I feel more confident every day that he is learning to control these movements... as others on this blog have said. I remind my son constantly how much I love him and how proud of him I am. I really do not ask him to refrain from these movements any more when we are alone unless there really is a need. I am starting to feel more comfortable telling myself that this really is just a way that he "plays." For example, he will tell me he isn't done yet because a car needs to finish the race. His imagination is awesome and I do not want to take that from him. Of course I can go on and on... he's the love of my life. Hope this is helpful? Jen

Apr 03, 2012
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Amanda
by: Anonymous

Hi Amanda,
My sons behaiors started at 2 and seemed to "explode" when he turned 3. It was/ is soo excessive, which is why I initially feared how these movements would affect him socially. No one has ever really noticed his behaviors or so I am told. I started pointing them out to close friends and fsmily to see their reactions and to be honest no one really thought anything about them but became a bit focused on it as a result of how I was reacting. My son does go to school part-time and his teachers have yet to see it. I know when my son is doing them becaused I watched him like a hawk trying to understand what was happening. As far as I can tell, when we are in a social setting his movements are very brief and I believe he is able to control it because he is aware of them for the most part. For example, I will see him squirming his feet around when he is sitting and eatting at school or hit his one hand into the palm of his other hand (like a baseball player) as a possible temporary outlet?.

Apr 03, 2012
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Reply to Jen
by: Amanda

Jen- your nearly 4 year old sounds like my boy who just turned 4! Exactly. Is he at school? My son is & we are having trouble with teachers accepting these movements and not thinking they are signs of spectrum disorder. Can you share more about good links to awareness/mindfulness ideas for children please? My son also shows some anxiety & emotion dvt delay/lack self talk skills so looking for ideas if you know of any in your field. Thanks so much

Apr 02, 2012
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Re: crafts
by: Anonymous

My soon to be 4 yr old is very social, intelligent and creative. He shakes his hands, makes sounds and facial expressions when he is excited or when he is not engaged in an activity. I was hoping to find an outlet like music and crafts for his excitement as well. I am a mental health clinician and have practicied awareness training with him this past year. I believe that my son can control his movements, although he doesn't want to most of the time... why would he? He enjoys himself and is at a beautiful time in life where he doesn't realize that society holds certain expectations for how people should and should not be. Sometimes I ask my soon to be 4 yr old son to share his stories outloud. I feel like it could be helpful as a means to channel his creativity in the form of storytelling... His imagination is incredable and who knows... maybe he will grow up to be a best selling author. I have accepted his movements because I know in my heart that he will be fine as he ages. He is aware of his behaviors at this young age and I believe he will know when and not to engage in them based on his own comfort level. The movements seem to enhance his imagination which really is fascinating to me. Jen

Apr 02, 2012
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Delayed 2 year old
by: Anonymous

Doctor,my son will be two in less than two weeks. He was diagnosed with low muscle tone in his arms and legs. He does the flapping thing with his hands and bobs his head when he's excited, focused or tired. He's been doing that since he was a newborn. He isn't walking by himself yet, but can now do the push toy and doesn't walk on his tippie toes either. He crawled by the age of 17 months. He's a perfect parrot with speech, he knows how to count to 13 and knows his ABC's. He can also sing a song in perfect tune, a couple of them. He can't feed himself with a fork yet, I have to put the food on the fork for him. He had micconeum aspiration syndrome at birth, the doctor said the lack of oxygen caused delays with his grey matter developing. All of his therapists from PT, Occ and Speech have NEVER met a boy like Jack. They said he is so unique. He doesn't like to cuddle, but he gives kisses, is extremely social, belly laughs a lot, and is always smiling. I would like your study too. bridgetnv71@yahoo.com

Apr 02, 2012
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Caro's question
by: Roger D. Freeman, M.D.

No, I don't know of any research on music and crafts substituting for stereotypic patterns, but it makes some sense.
If anyone has any examples, I'd like to learn of them.

Apr 01, 2012
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Hand flapping, wow!!!
by: Pius

I am 29yrs old and its great to know that there are people out there like me. Hope to comment more soon. There are lots of things to say

Mar 31, 2012
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Hand flapping, wow!!!
by: Onyedika

I am 29yrs old and I've been hand flapping for only God knows when. I am happy with the postings of parents who are doing thier best for thier kids who hand flap, and also trying to know more about the condition. From the moment I became aware as a kid that I hand flap, life was hell for me. I was someone to be avoided so as not to cause people around me embarrassment, my parents saw my ''moods'' as a bad habit and therefore to be stopped, that it was culturally unacceptable to behave funny. But as I grew up, I realized that it was an integral part of me. Doing it makes me happy, makes me focus, and it take me to a higher level, places where I cannot get to by being socially acceptable.

Sometimes I just wish people would understand that I am not a societal flaw to be fixed.they should know that the hand of the creator thought much before he formed me. If people can understand that we are a people of diverse traits and characteristics to be expressed as deem fit, and any attempt to suppress it is tantamount to obstructing the human flow. Once again thanks to parents who are solidly behind their kids. As for me, I am in bliss. My email is ponaquinas@yahoo.co.uk

Mar 27, 2012
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message to Dr. Freeman
by: Jenn

Hello all: It is interesting to read the comments here and questions...so many of us are in the same boat of looking for answers! Dr. Freeman, I read your article SMD: Easily Missed. It was a very interesting read and I found that my son, 3 years 10 mos, had some of the qualities of the persons in your study. Our son has recently started OT but began speech therapy about 3 mos ago. He has good eye contact but his social skills are poor; language development poor but it may have been due to inner ear blockage that recently got fixed. He is very sensitive to transitions and has a meltdown if you don't prepare him for such times. He is getting better at using words and I think he is understanding more, too. Since he was about 14 months, he did this thing with books, paper, DVD cases where he "edges them" with his eyes or will hold the object in one hand while he does the hand movements with the other. He bounces around a lot, gallops in circles, but does a strange thing with his hands and fingers, "pecking" them in front of his eyes both when he is running in circles or even when he is very excited. He has a lot of stimming behaviors going on and this seems to be one of them.

Testing revealed that he is a sensory seeker or may be on the spectrum. Some days are worse than others in terms of the frequency of the hand movements. They are also in combo with facial gestures and sometimes noises; but always when he is excited. Dr. Freeman do you think any visual processing difficulties are related to movement stereotypies? Are you aware of any specific visual processing tests that could be done to target this? I want to try to avoid neuro testing until he gets a little older. Thanks in advance!

Mar 25, 2012
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a very concerned mom
by: Anonymous

I would like to have a copy of the study as well chel_2569yahoo.com
Thank you!

Mar 21, 2012
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"busy hands" solution?
by: Caro

hello ta all,

And thanks so much for your wonderful input here.
I ve been looking for ages for answers concerning our 4 year old daughter, who acts strange too: hands flapping, eyes and face grimacing as if in another world, tremendous imagination but hardly any contact with others.
Well, the point is not to give you full description, just to ask if any have ever tried music or craft

= piano, guitar, flute to pour this energy and imagination in the instrument rather than on imaginary drums?

= drawing? painting? clay?...

any improvement? in flapping, in self esteem in social skills?

Thanks to share your thoughts, I will be glad to hear about things you do to or you ve tried to cope with it.


Mar 15, 2012
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My 15 year old Jumper
by: Anonymous

My son is 15 years old and is extremely bright. Straight A's his whole life. He is ADD but not on medicine. However, one of my concerns is his jumping around for no apparent reason. He says he likes doing it. It helps him when he's stressed or has a lot of homework, but sometimes it also distracts him and causes him to drag out his homework, many times until midnight. When he's suppose to be doing homework or studying, I catch him jumping around. I redirect him to focus. He doesn't do it anywhere else except home. The other thing that bothers me is that he tells me that he is distracted by his own thoughts of bad things he's done. For ex. saying a mean comment to someone or not being as polite as he should have. (Little things!) He dwells on these thoughts and claims his ipod helps get rid of the thoughts so he can work. On this note, he may be pulling the wool over my eyes, but I know he's very deep like that.
- He has friends.
- He seems normal engaging with friends, sometimes a bit eccentric.
- Doesn't like greeting new people. Will do so in a very robotic fashion. I told him that he needs to smile to sell the greeting. He thinks that smiling during a greeting is ridiculous and not needed. He's very matter of fact. However, VERY respectful. Teachers love him and so do adults.

I am very confused. However, the jumping around, wasting time, is killing me.

Mar 14, 2012
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anonymous, march 10th, question
by: Roger D. Freeman, MD

The point about privatizing the pattern as one grows up is that one gains more control - just as you describe. If the stereotypic pattern enhances enjoyment or imagination, then one may prefer to do it, but not do it because of the presence of others. It is a choice for persons who have reasonably good social awareness.

Mar 14, 2012
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ADHD but now havin austisic signs x
by: kerrie

Im really worried bout my son hes 10 and go a special school to cope with his behavior past month ive noticed wen hes getting excited hes puttin his hands in front of his face n doing weird facial movements n noises . tonite at dinner table dad was making our children have a giggle n michael laugh that much he got over welmed n started to cry like he couldnt cope as to cry with laughed then for 5hours solid just keeps keep laughing with hand movements going in to weird calmness n wouldnt know where there couldnt ave a conversation with him ... its like out son has disappeared... its like hes has formed autism .. I said weeks ago hes showing more signs of autism then adhd .... is this possible to go from adhd autism

Mar 10, 2012
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?
by: Anonymous

Dr. Freeman,

Just wondering if these stereotypies will happen anytime my son is not concentrating on something when he is older or if he will choose when and when not to engage in these behaviors when he gets older. Any thougts on this would be much appreciated!

Thank you!

Mar 08, 2012
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Some additional information and another blog
by: Anonymous

Hi. I recently posted a few weeks ago. Since the I came across the Johns Hopkins website for complex motor stereotypies which has good information and I also was given this website blog from their research coordinator. My daughter who is 2.5 is too young for their research study, the minimum age is 4. You may want to check out the research study requirements to see if your child qualifies. Anyway, after going through the blog, I feel quite assured, the kids with these complex stereotypies like i think my daughter seem to learn to control the behaviors in public as they become aware it is different, but they still have them at home as adults and that seems ok with them. I just want my daughter to be healthy more than anything, so that's reassuring.

http://www.motorstereotypy.org

http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/pediatric-neurology/conditions/motor-stereotypies/

Cyndi

Mar 04, 2012
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seek help
by: Anonymous

Dr. Freeman's suggestion of seeking out an evaluation for an aspergers or high functioning autism diagnosis is really great advice. His anxiety is not going to go away on its own. If he has a better understanding of himself through professional help he can learn how to deal with these things.

Mar 03, 2012
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one more thing
by: Anonymous

One more thing, he only talks to imaginary poeple when no one else is around. Even though he knows they are not real, he can become lost in the conversations they can become VERY heated. Then, when someone shows up, or appears, he quickly stops and acts normal.


Mar 03, 2012
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Reply to "Similar, but related (possibly) condition..."
by: Anonymous

Hello me again,
Thank you both for your responses. A little more information:
He is well aware that the people he talks to are imaginary. He is also aware that his behavior is abnormal (the talking and the twiddling). When he is out in public or around anyone not in the family, he will not do these things, and he can look normal (although shy/quiet). However, when he is alone or around family members, he will do it.

Also some new information I found out; although he can appear engaged and interested when around other people, he admits that he feels very anxious around others ( extreme social phobia). My guess is this came about because of his lack of social skills due to a lack of social interaction throughout life (due to his preference to be alone all the time and imagine/twiddle). He has extreme social phobia (and agoraphobia) that manifests itself as extreme discomfort when looking people in the eye when interacting with others, checking to see if neighbors are outside before leaving the house, and not liking to go to public places with very many people (malls, restaurants). However, he mentioned he only wished the phobia would go away, and not the twiddling compulsion. In other words, he enjoys it and says it's all he has to look forward to. He doesn't have very many friends (all friends were short lived). He said he gets lonely at times, but doesn't know how to make and keep friends, and refuses to stop with the compulsions. He once tried stopping for two weeks and became severely depressed, bored, lost weight, grades slipped. It's like a drug to him. I wish he'd interact with people more, but he says it's extremely exhausting. Thank You again.

Mar 03, 2012
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"Similar, but related (possibly) condition..."
by: Roger D. Freeman, M.D.

This is tricky to guess with limited information -- but the description is beyond what we have described as Stereotypic Movement Disorder as a diagnosis, in at least 2 respects: (1) The hours he can spend after this many years of the pattern; (2) the twiddling with objects, not just his own body; (3) his social skills are not age-appropriate; (4) the grandiosity needs at this age of 17... The combination seems more than that of a bright highly imaginative but sociable child who enhances his fantasy life with a stereotypy, so if it were my child I'd consider getting an assessment for high-functioning autism/Asperger disorder.

Mar 02, 2012
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response
by: Anonymous

Does he know that the people are imaginary when he has these conversatins with them or are there times when he truly believes he is talking to others?

Mar 02, 2012
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Similar, but related (possibly?) condition
by: Anonymous

I just wanted to put out my experiences to see if anyone could tell me what's going on. I have a son, who's in high school right now. Ever since he was young, maybe about 3 years old, he would pace back and forth rapidly in the living room while twiddling his fingers in front of his face. While he did that, he would make sound effects with his mouth (explosions, car noises, ect. could be anything). He would seem lost in his own world and could do this for hours.

Fast forward, he's 17 now, very introverted, has few friends, get's good grades in school (A's and B's) and, although shy and not very social, in every way seems like a normal person. But, he still has a compulsive habit of twiddling long objects in front of his face and staring intently at them (pens or utensils for instance). He could do this all day every chance he gets. He'll sit down and do it (looks almost as if he's staring down into the table, and waving the object in front of his face. It almost seems like his concentrating on something and he'll make sound effects while doing this too.

I asked him what he was thinking about, and he said it's random thoughts (anything from what happened during the day, to a new movie he saw that he was reliving, to more sexual or grandiose thoughts of power ect. These grandiose thoughts could be ones such as imagining himself as a dictator, celebrity, serial killer, criminal, or more far-fetched things like being a superhero). He also talks to imaginary people. These conversations could turn into arguments at times and he gets very emotional and intense.

He has had a normal upbringing with no abuse. He has two older brothers who do not do any of this and are perfectly normal who recently graduated college and have successful careers, friends, love life. He also does not have any disorders such as down's syndrome or autism (that I'm aware of). If anybody could give insight please do! Thanks in advance.

Feb 29, 2012
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"Is there an average age..."
by: Roger D. Freeman, M.D.

Roughly, an average age for a child who is not blind, autistic, or intellectually disabled to start to perform stereotyped behaviors more privately will depend upon the child's social awareness and response to embarrassment; we find with our children that this seems to start in middle childhood (around 7 or 8 years of age). It's not likely to be consistently uphill after that, because stresses and excitements in school and elsewhere may affect the balance between responding to an inner need versus to the growing awareness that others don't do it, and if one does, one may be teased and embarrassed. We see it as parallel to privatizing other behaviors like nose-picking, crotch-grabbing, bottom-scratching, yawning with your mouth open, etc.

Feb 29, 2012
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I am surprised!
by: Angela

I am so surprised at all of the children that sound so similar to my son. He will be 9 years old March 30. About 3 yrs. ago he was diagnosed PDD. He had been evaluated a few times before , he was born at 24 weeks so that seemed to throw so many things off. My son flaps his hands, or sorta wrings his hands, bugs out his eyes and grimaces as though he's in pain, and also run around, when he gets excited. He is obsessed with Titanic, monster trucks, and turtles and have been for some time.There is always an obsession, so there is always excitement therefore all of the flapping and such. He's never been on medication, we've tried different diets, nothing seemed to work. Children are beginning to be cruel to him and he is feeling left out and very sad, because as he says I can't help it...I'm wondering if anyone has has any thoughts on this...

Feb 28, 2012
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worried
by: Anonymous

My son displays lots of these behaviours he hand flaps jumps up and down twitches his hands and feet when excited also he likes things his way just like a 2yr old would but hes 3 years and 8 months and at nursery so he gets into trouble with the teacher he then screams he also hasn't got much of an awareness of danger even when its explained he just dosnt seem to listen to things he has no interest for he also had a delay in his walking he didn't walk untill he was 23months old and even now he runs insted of walks and always looks like he's going to fall over. He is above average for his vocabulary and use of words and naming objects but below average on problem solving he has no medical problems. He is a social child but he likes to play with older children or adults not children his own age he has two 10 year old brothers I am very worried that he is autistic and iam embarrest aswell which makes me feel like the worst mother ever I see other perents stare at him and they say things like bless him which I find insulting he dosnt like things up or spin weels he has lots of imaginitive play and makes up storys and can tell how your feeling by your facial expressions iam so worried he has autism

Feb 28, 2012
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?
by: Anonymous

Hi Dr. Freeman or anyone else that can comment,

Does there seem to be an average age range when children with stereotypies begin to engage in these behaviors more privately? Thank you in advance!

Feb 27, 2012
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Needed Some Information
by: Stacy

Dr. Freeman, can I also get your paper? stacy_jean@hotmail.com.


Feb 27, 2012
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Finally an answer
by: Roxane

I am amazed to read so many posts that describe my 7 year old sons' behaviors. He has shaken his hands, bounced, and made noises for years. He usually does this when he is excited or when he is using his imagination. Yesterday I asked him what he was doing while he was doing the things I mentioned above. He said he was pretending to drive and shift a truck. He also seems to get excited when he is watching things like fans, or other things that really interest him. I had him tested for Aspberger's last year, but our Pediatrician said it didn't fit him. She just said he was "quirky". He's very intelligent, imaginative, funny, loving, and kind. He does great in school and has friends. I'm not sure if it makes a difference, but he walked and talked late and took forever to potty train. He still has some problems with a few letters in his speech and goes to speech therapy. I'm very thankful to all of the adults who have written and made me feel so much better. I hope that soon he will be able to control it more at school and in public, as you all have. I, too, worry about teasing and bullying. Thanks so much.

Feb 21, 2012
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My 2 1/2 year old daughter, can you send me info
by: Cyndi

Good evening. This has been very helpful. I have not sought any type of professional diagnosis, my pediatrician said it is perfectly normal. I do not think that it is! However, I am not as concerned as I was. Seems like behavior modification could be our answer. Whenever my daughter gets excited or does seem to be stimulated, she hand flaps, most of her body goes rigid and she makes a very odd face and kind of shakes. This can last for 5 seconds or more and sometimes she just does it once or wil repeat. She will do it even when it is the same thing exciting her, she may have seen a hundred times. She started playing simple toddler games on iPad the last few months and does this whenever she gets rewarded. She does it in public as well, most often I see her do it at the grocery store when items she is interested in go down the conveyor belt. We've had a few people ask us recently if she is okay. If I did not know her, I would think it was odd too. I recorded an event on my phone and showed it to the pediatrician and she said she "thinks it is cute and sees it all the time". Well, I am a bit concerned as I don't want other people to make fun of her. Please send me any info you have. I really appreciate it. Cjearman@gmail.com

Feb 20, 2012
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Overexcitement
by: Kristi

I always wondered what was with my son when at barely six months old he started the hands flapping, legs wiggling, mouth open excited look. He has continued this whenever he is stimulate by new things, bright colors, moving objects, etc. He never sits still, always bouncing around like he has too much energy. He has never been a good sleeper, we always thought he was just afraid he would miss something, LOL He is almost two now and I thought about bringing these "issues" up at his next appt, though I am not that overly concerned, I just want to make sure he's getting everything he needs. He is very smart, extremely inquisitive, quite social, to the extent that it scares other kids his age when he abruptly grabs for their hands or to hug them. He did have some developmental "delays" not walking until 15 months and still unable to speak clearly more than a dozen words. I understand that all children develop at different levels so I have never worried about that. However, putting all these things together, combined with the suggestion that soy formula might play a role, I wonder a little. Any suggestions what specific things I should bring up? Also wondering if I could have a copy of the study sent to me? Wouldn't mind speaking with other people who are dealing with these things. Thomasmccaig@yahoo.com

Feb 20, 2012
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finally
by: Suzanne

Hello,
I finally found this site while searching for answers to be son's bouncing and hand flicking movement. The bouncing and hopping occurs when he is excited or appears to have to release energy. He stretches his legs or has to leave church to bounce around in the church basement for 5 minutes before returning. This almost seems like restless legs at times, but he never has an issue at bedtime or with sleep. He flicks or shakes his hands when he is excited, particularly when he is being creative and working on an art project. My son is now 9 and has done this for as long as I can remember. He is very creative, not like my other 2 children who are more athletic. I used to worry about Autism spectrum, but he has no other characteristics. I am amazed and relieved to see so many other children just like my son! Dr. Freeman, I would appreciate any studies or information from you. My email is sbilse@charter.net. Thank you!

Feb 17, 2012
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Amanda's question
by: Roger D. Freeman, M.D.

Amanda, about the right/left brain connection and "crossing the midline" - so far this idea is much too vague for me to comment on it. Therefore I don't have a specific reference. ALWAYS REMEMBER that stereotypy is most often a symptom, not necessarily a disorder unto itself. If it is the major problem above anything else the child might have, then maybe it's OK to call it "SMD," but I think the terminology is a problem. So many of the kids with an obvious stereotypy are also diagnosed with something else that "SMD" is really confusing. There is controversy right now among neurologists about whether "stereotypy" is a clear and useful term, because tics are a form of stereotypy, too, as are other movement patterns. I think the terms we use will still undergo evolution in the way they are used. The question is, then, for your child: IS IT REALLY IMPORTANT, WHOM DOES IT BOTHER, AND WHY ARE SOME WORRIED ABOUT IT? I think it's the unclear future of the pattern that causes much of the concern.

Feb 17, 2012
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thank u for sharing
by: Anonymous

I want to thank everyone for sharing their stories. I shared about my 5 yr old son's fist clenching and grimmacing on 1-19. I have spoke w/ doctors and I am assured he is fine. I am concerned that it's the beginning of something eles....so reading the stories of people who have done these different types of gestures their whole life and they are healthy,happy adults is so reassuring.

Feb 15, 2012
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observation...
by: Amanda

Hi Dr. Freeman, I intially found your research and comments regarding smd two years ago, when my son was just under three years old. I thought I'd stumbled upon the answer for my son's bizarre flapping with mouth wide open behavior. As time went on, the flapping continued, the mouth became closed... but small delays in his speech and motor skills at age 3, have since become much larger delays. He's imaginative and can memorize books, songs, letters, dialogue, etc. But if the answer to a question isn't static, he can't answer it, and often his words are scrambled. I brought all of this up to my pediatrician when my son turned 4, and he thought there was a right brain/left brain connection issue. I asked for a referral to a developmental pediatrician, and at that appointment (7 months later), I was told my son is not autistic and was dx'd with unspecified developmental delay with orders for more testing. So, in some respects, when I read comments from parents whose children are 2.5 to 3.5, thinking smd might fit, I would urge them to keep a close eye on things because I'm suspecting that children are really too young at that age to be demonstrating the full picture in terms of possible delays. To Dr. Freeman, I understand if you can't answer this question, but out of curiosity, do you happen to know where I could go to find more info about disorders with crossing the midline if my son indeed has a right brain/left brain connection problem? Thanks.

Feb 10, 2012
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I've lived with this for 40+ years
by: Anonymous

I have always wondered what was 'wrong' with me. From an early age, I would lose myself in exciting imagination and 'awaken' seconds later realizing that I had been contorting my face/mouth, wiggling my fingers and opening/closing my hands. Its embarrassing when someone sees me. Finally, I decided to look it up and found these posts.

I am in my mid 40s, a CPA, an honors graduate of an esteemed MBA program, and I speak a couple of languages. Please don't worry about this impacting your child's mental capacity.

I'm relieved to learn that others have experienced this, and that people are coping with it fine. Aside from the embarrassment of being 'caught in the act', I don't feel any need to treat this and don't feel that it is dangerous or in any way problematic in my life.

Thank you all for your sharing !!

Feb 10, 2012
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for Diane
by: Roger D. Freeman, M.D.

This sounds complicated... There's a possibility that a child specialist in Siena might be helpful to you. If you want his name I could provide it to you if you email me at my address:
rfreeman@cw.bc.ca

Feb 09, 2012
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13 year old with hand flapping, neck turning, facial grimaces
by: Diane in Italy

My son has flapped his hands when involved in imaginative mental exercises (creating entire stories with lots of details in his head) for many years. He bounces around while walking back and forth at the same time. He is able to control this for the most part and does it outside in private, but little bursts of it "escape" from time to time around others. When he's finished he'll often come inside and write a chapter in his book or draw detailed pictures.

He's started something new over the last few months--rolling his head around while sucking in his cheeks and rolling his eyes. At first I thought it was a nervous tic and ignored it...but it's gotten worse. He can usually stop it if I stare at him or say STOP but then eventually he "needs" to do it and will wait until I leave the room or he leaves the room.

Before and after the "episode" of neck twisting, cheek sucking and eye rolling he can be having a normal conversation with someone but while in the "episode" he doesn't talk at all. It lasts for a few seconds.

I think it's anxiety related (he has said if I remind him to take a deep breath it helps--and he used to chew on his shirt collar and every pencil when younger) but I don't know if I'm doing more harm than good by focusing on it so much. We've been out of school now for more than a week, so I don't know if he can control it at school (he says he does it very little at school, but I have seen him do it around his friends while they've been visiting).

My son also seems to have Attention Deficit in that he's sometimes in his own world and doesn't "hear" things which are said to him. This also seems to be getting worse. One-to-one tutoring is helping him get through school.

I'm concerned that I should do something or it will get worse. I'm also concerned that his Middle School classmates will make fun of him and/or avoid him because it is a scary-looking thing to see the facial grimaces.

I am in a little village in Italy and I don't know where to begin. Neurologist? Psychologist? GP? Suffice to say that I'll need to go into Rome to find anyone who might begin to understand this... but even then, what would be the next step?

Feb 02, 2012
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Alan K's question
by: Roger D. Freeman, M.D.

Alan,
That seems to be a typical description of a stereotypy that is associated with excitement and/or imagination, and as you can probably see in many of the entries here, we don't consider it a disorder unless it significantly interferes with normal activities. Why it occurs in some children and not others, we don't know (but that's true of lots of our quirks). The major risk is the misunderstanding of other people, especially as autism or Tourette's (unless those conditions are co-occurring).

Feb 02, 2012
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hand flapping
by: Anonymous

My daughter has done this for as long as I can remember. When she was watching something or concentrating on something her arms would go up in the air rigid and her hands would whirl around. We would say she was riding an invisible motor bike. When she started school we mentioned this to her teacher as I was worried about bullying. When she did this as school they would say nothing but push her arms down and gradually she use to hold her arms down but still twirl her hands. Gradually over the years she learnt to cross her arms and you could still see her fingers and hands twitching. She is now 19 years old and a hairdresser (hasn't killed anybody yet). She still does it when her concentration is locked onto something and she says she doesn't like to tell anybody. But it is not the end of the world just as I call a quirk she has. It has never been looked at by doctors or schools and she is a normal, healthy, beautiful girl. So please don't worry about your childrens little quirk.

Jan 29, 2012
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Rigid excited child
by: Alan K

It's bin day here in my suburb in Melbourne, Australia. This means bin trucks, and my 5 year old, who is obsessed with them, will run down and stand at the gate to EXCITEDLY watch. He will grimace and have bouts of rigidity, stiffening his the arms with hands turned backwards,almost like he is bracing or leaning against a strong wind, ready for take off. It only lasts a second or two, but it will happen a few times. I've read some of the comments and he has other symptoms also. The excitedness, the standing up all of a sudden when watching a good television show. Like I said it only lasts for a second or two, and his kinder teachers said it's nothing to worry about. He's bright, happy, social, and intelligent. Loves trucks and planes and is very imaginative. Does anybody know what causes it? Thanks. AL

Jan 28, 2012
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4 year old follow up
by: Heidi

I forgot to add in my earlier post (which isn't showing up on the board yet, but I assume it will) that my 4 year old son is also excitable and had a couple episodes of "dusty" or "dusky" spells the first week he was born, so he was kept in the NICU for a week. They ran tests and concluded they didn't know why he had these couple of incidents. These spells were evidenced by a lack of breathing and skin turning gray. Once shaken, he would breathe again. It only happened 3 times I think in his first week of life, then never again.

Jan 28, 2012
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4 year old son fits here too!
by: Heidi

Hello,
What an awesome resource. Thank you! I would also like a copy of the paper from Dr. Freeman. missheidileigh@yahoo.com. My son was born a week late, emergency c-section, has had minor speech and occupational therapy is above-average intelligence, very creative and very social.

He has bounced since he was born, has always been a little rigid and slightly uncoordinated. He "bounces" like Tigger when he gets excited, but repetitive movement seems to really set it off (rolling balls, spinning wheels, etc.). He will do it on his own as well without watching movement, such as when he is engrossed in an exciting activity or thought or watching something exciting on t.v. He also easily breaks from it if you call attention to it, but when it occurs as a result of movement (as described above) you have to remove him from the situation or else he will fall right back into "bouncing" while watching the movement. Something to note though - that same movement on a different day may not result in such a strong reaction from him. It depends on the day and circumstance.

I have also asked my son why he does it and he says he is excited or happy. To me, it really does seem like a release for the energy. Most recently I have noticed that, as he bounces, sometimes a little sound will slip out. I think it happens because he bounces with such force sometimes (when he is really excited).

One other thing he does - that I noticed one other person mentioned about their own child - is he will occasionally repeat a word in a sentence. For example something like this, "We are going to watch the movie. Movie." When he says "movie" the second time, it is almost under his breath. He also stutters on occasion (most people wouldn't notice it except when he is really excited about something).

I am interested in hearing more and keeping in contact with others as we learn more about our children who display these behaviors. They are wonderful, beautiful little people and I agree that perhaps nothing needs to be done to change it...we just need to gain better understanding of it.

Jan 27, 2012
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6 year old
by: Anonymous

My son is 6 years old and in kindergarten. He is a big hand flapper. He does it when he is happy, he does it when he is excited and doing something creative. He has flapped since he was a baby. It goes through phases and always seems more pronounced before and a couple months after the holidays, probably because of so much excitement. He also has some anxiety issues, but otherwise is a very smart and social boy. There was a time I thought he had Aspergers, but now have had many professionals from various disciplines and teachers tell me that they do not think he is, he is too connected to be on the spectrum. Though, they also tell me it is very unusual for them to see a child who flaps so much who is not on the spectrum. It doesn't really matter either way, but at this point it is the only thing that sets him apart from other children at school. I am hoping the peer pressure will help teach him when it is appropriate...but really at this point he still does it a lot. Kids sometimes say something to him and he will stop briefly, but it's very hard for him when he can't use it as a release. I am trying to teach him when it is appropriate or not, but honestly I think that by pointing out to him that it's not okay to do it at certain places, it just makes him want to more. He obviously needs another type of release that he can do in crowds, but we haven't found one that works for him. That's just our story. Nice to see so many others in the same situation...

Jan 19, 2012
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Recent paper
by: Anonymous

Hi Dr. Freeman,

You mentioned a "recent paper" in a recent response and I would love to read it. Can you forward me the link at floyd101@hotmail.com or post it? Thank you in advance. (Re: Stereotypie label being inadequate).

On a side note,

I have been tracking my sons stereotypies for the past year and a half (he's 3 1/2 now) and as much as it bothers me... it's purely because I was afraid of what it might have been. I feel much better about his behaviors now that I know he enjoys doing them. He usually says he does it when he is pretending to be a real train or something and ... well, I wish I was able to engage in creative play like that sometimes:) My son is creative, intelligent and happy. If he engages in this behavior at times when he is bored... well I guess, so be it. I was extremely worried but after reading posts and watching the progression of these behaviors I am really starting to understand how excessive my worrying has been.I think as parents there will always be worries or behaviors that our children engage in that may make us socially uncomfortable unfortunately, but we have to focus on all of the positives and my son has so many!!! We talk about his behaviors and I try to help him realize when it is okay to do it and when he should refrain. Believe it or not, he gets it most of the time. I guess I just want him to realize he cannot do this "all" of the time.

Thank you!

Jan 19, 2012
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MY 3 AND A HALF YR OLD SON JUMPS UP AND DOWN AND HAND FLAPS
by: Anonymous

MY 3 YEAR OLD SON DOES THIS AND HAS TEMPER TANTRUMS, BUT APART FROM THAT HE ACTS THE SAME AS ANY OTHER 3 YEAR OLD. THE NURSERY THINKS HES AUTISTIC. I AM SO WORRIED AND AS AWFUL AS IT SOUNDS I FELL LIKE I AM LOSING MY LITTLE BOY.

Jan 16, 2012
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PANDAS and stereotypies
by: Roger D. Freeman, M.D.

Lots of sometimes conflicting research has been done on so-called 'PANDAS' but there's no indication that it's related to what we term 'stereotypies' (unless you include tics as stereotypies). (A recent paper by neurologists strongly suggests that the definitions of stereotypies are inadequate and confusing.)

Jan 16, 2012
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Strep
by: Anonymous

Hi Dr. Freeman,

Do you know if any research was done to see if PANDAS could cause stereotypies? Thank you in advance!

Jan 16, 2012
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Reply to Labels
by: Anonymous

I loved your comment! I wished I saw more like them! Would love to hear your theories on all the labels. I have my theories too.

Jan 14, 2012
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Reply to below
by: Anonymous

Hello
Just wondering if your 5 year old does it at school though? And what his teachers have said to you?
Thanks

Jan 14, 2012
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My 5 yr old son does almost same thing when excited
by: Anonymous

I have been to numerous docters and searched the web for answers. I have mostly studied my son for clues, looking for anything that might suggest that there was anything wrong. There is nothing wrong with my son. He excels in almost everything he does. His ability to to communicate has always been commented on in a good way. He recently won the cutest cowboy contest out 30 boys probably because when asked who his favorite cowboy was he said matter of factly. "Gene Otrie". He is sooo creative, social and loves kindergaten. When he gets excited he clenches his fists and raises his arms sometimes one eye will cross. When we are home we are fine w it when we are out I just say his name and he he immediately stops. He knows why I say his name but it's an unspoken cue between us it's one of the many ways I love him.

Jan 10, 2012
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my son's been doing this since 6-9months
by: Kim

My 3 year old son has been clenching unclenching his hands in excitement since he was 6-9months old. He still does this regularly when excited and has added jumps and jumping. He has often been called Tigger. He is very bright, and social and has no delays thus far. I googeled hand clenching and jumping just to see if there was anything out there and I found all of you. I am elated to learn the vast numbers of others out there who seem to have learned to deal with these issues a they continued on thru childhood and into adulthood.. I have mentioned these things to our pediatrician since my son's birth and have been assured it's nothing to worry about. Should I seek further diagnosis/information? I am doing him injustice if I don't? appreciate any advice.

Jan 07, 2012
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my 6 year old too!!
by: becky

My 6 year old son shakes intensively with his hands clasped in tight fists jumps up and down and flaps his arms, when he is in this state he does not respond to calling him only if I take his arms and hold him then its like he doesn't know he has done it, he will not speak to me or my partner about it, he becomes angry and gets embarrassed. He is also very hyper and is hard work he doesn't listen to anything he is asked he often lashes out and hits his 1 year old brother and I have recently had a third child and he will threaten to hit him if told off he will run out the front door and often tell us he hates us all he's behind in school and he often puts himself down ... If someone could also give me some advice or help me try to understand how to help him deal with this his school has dismissed it!!

Jan 05, 2012
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"Maladaptive daydreaming"
by: Roger D. Freean, M.D.

I don't know what "maladaptive daydreaming" is - it's not an official diagnosis and as far as I know has nothing to do with stereotypy, so I can't comment further -- sorry!

Jan 05, 2012
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Re: labels
by: Anonymous

Thank you for your post. It's refreshing!

Jan 05, 2012
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Labels
by: Anonymous

I hate to say this, because I know it will probably be unpopular, but as a parent and teacher, the people I get most upset with are those parents of autistic kids who insist that your child must be autistic also and you are in denial if you say they aren't. I'm not saying ALL of them are this way--I have many friends who have autistic children. However, there seems to be a group of them that troll the internet daily trying to diagnose other people's children. One thing they always fail to realize or acknowledge is that autism spectrum disorders are always a constellation or collection of issues, not just one, two, or even several. It also depends upon the severity of those issues and their impact upon a child's ability to function socially.

I have taught kids with autism, asperger's, ODD, ADHD, OCD, and everything in between. However, all the NT kids I teach exhibit their own little quirks . . .some of them bounce, some flap, some rub things on their face or stick something in their ear for comfort. Some of them hate certain textures of food, or insist on always using and wearing a certain color. None of them are autistic, but they are unique individuals. I am glad my generation didn't have to grow up under the type of judgement that kids grow up with nowadays. If they are anything but middle-of-the-road, cookie-cutter, fit-in-the-box AVERAGE children, they are given a label. And what does the label mean? In many cases, nothing. I disagree with MANY ASD/PDD labels nowadays, because they are given for anything and everything it seems. I wish we'd just get it over with and say we're all on the spectrum and continue giving services to those children who truly need them. What "services" would a child who bounces and flaps need? "Services" to "fix" him so he will fit our definition of what is socially acceptable? It's getting out of hand. There is nothing wrong or bad about being autistic, but there IS something wrong with giving a child the label just because they may have one or two "quirks." We ALL have them. I guess I would have been labelled on the spectrum because I flapped as a child. I am an intellegent, social college graduate who has acted and directed in plays for many years, coached speech team, taught, played in a church worship band, led Sunday School worship, and on and on. I have never had any problems functioning in society, in fact, I am more social than most people I know, but I may have been labelled anyway. Why? I have my theories, but I will save that for another day, since I've gone on long enough.

Can you please send me the study, Dr. Freeman? I would love to be able to refer to it, especially with coworkers and parents who are constantly wanting to label children as "on the spectrum" if they flap/spin/bounce or any other stereotypies. (butterflyamy7575@yahoo.com)

Jan 04, 2012
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research
by:

I would love to see have a copy of the research as well. My email is kim.wright25@yahoo.com

Jan 03, 2012
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daydreaming
by: Anonymous

Dr. Freeman,

Can you explain the difference between maladaptive daydreaming and stereotypic movement d/o? My son was dx with movement d/o due to hand shaking and facial grimmacing but I just came across this term and was curious about the difference. Thank you in advance!

Dec 30, 2011
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Our 3-Year-Old does this constantly!
by: Anonymous

Our three-year-old daughter has done this ever since we can remember. She had seizures when she was a baby up until around one year of age. I'm not sure if the two conditions are related. She is constantly "stuck," in a sense. She will be focused on something while contorting her facial expressions and twisting her wrists around. He face shakes with her mouth open, as if she's attempting to lift heavy weight or something. It seems to be getting worse as she gets older. We can snap her out of it by telling her to stop. Also, from time to time she will start to cry and say "I go down, down, down." She she does this it's like she is dizzy and cannot maintain her balance. It frightens her and us. My wife was put on all kinds of drugs during her rough pregnancy, including a Zofran pump and anti-depressants. No doctor seems to have any answers for us as to what is wrong with our daughter or how to deal with this. It has become "normal" behavior to us, but we worry about what her school days and beyond will be like.

Dec 28, 2011
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22 and still do it
by: David

This blows my mind. Since I can remember, I've clenched my fist and shook them against my face whenever I got excited about something. I stopped doing it in public after being made fun of. But I grew up, learned piano and jazz by ear, went to college, made friends, learned to ski, learned to party, and moved on.

That aside, I'm 22 and like everyone else here I still do it, but I can control it. I hide in my room, or lock myself in the bathroom to do it. Usually, when I get excited by something in a show, movie, book, or idea from class, I would feel so excited that I'd have to go do this and imagine it in another story I created.

Example:, while learning about the archaeological process in an anthropology class I took in college, I'd later imagine a very detailed story, almost a drama, about kids finding artifacts in the woods that would be complete with plot, setting, character personalities, emotion, etc..
Another example: when I first saw the matrix, I went off and imagined a story about alternate realities, again, illustrated in my mind with full detail.

Sometimes it's not about stories though. When I took some engineering classes I'd fantasize about building projects from start to finish. I'd even throw in complications that would arise that I couldn't solve until later in the fantasy.

All in all, it's a pleasurable experience. But it usually leaves me out of breath and with a pounding headache. I also get dizzy and can't focus for an hour or so afterwords.

To rewind the clock a bit: I was diagnosed with ADHD in high school because I sucked at getting anything organized or paying attention. My doctor put me on Strattera, and I somehow passed high school. I went to community college for a summer and a year and then got accepted to a good state school. After a while, I said "screw it" to the medicine. And I went back to my old ways. But it never helped me stop the clenching and shaking.

After trying Adderall once to help me study (without a prescription), I was convinced that his could help me. So now I'm back at with my old psychologist whom I haven't seen in years and finally came out about this condition I have. He's perplexed. My drug dealer (my other doctor that can actually prescribe) is convinced it's OCD. But I don't think it is because awhile back I saw my little cousin pace around in the backyard, clench his fist to his face, and mutter to himself. I KNEW what he was doing. He was imagining some sort of story. But since he wasn't even born when I stopped doing this in public, there's no way he could have copied my "ritual".

I apologize for being long-winded, but the amount of people coming out and describing what I've been burdened with for all these years is a breath of fresh air. I'd love for this to not be labeled as ADHD or OCD. This HAS to be something different.

Email me at dlandry603@gmail.com with questions or stories. I made this email just for this. Please no spam or invitations. Thank you.

Dec 27, 2011
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More answers
by: Michael D

"When you say that you do it all of the time... is it because you enjoy it or want to do it... or do you have to do it to release some pent up energy?"

That's actually a pretty tough question to answer. I think the answer is "yes" to all. I get a sudden rush of excitement many times throughout the day. Whether its watching a touchdown on TV or running to my car and closing the door quickly to get out of the rain, excitement builds and builds and once its over, I feel the need to release it. Naturally (for whatever reason), this means I clinch my fists and my face, and shake. So therefore, I do enjoy it because it calms me down afterwards, and I do want to do it because of this release. Whether or not I have to do it, I'd say no because I can control it. I don't necessarily have to do it. But in private, I'd do it everytime, sometimes multiple times for the same event. In public, I would either not do it, or quietly excuse myself and go behind a wall or into another room and do it quickly.

Honestly, it's so funny to think about all of this because I've never talked about it before. Reading all the parents' responses on their child's behavior comforts me to know that I am not the only one. It's nice to see that this "condition" isn't as rare as I once thought it to be.

Dec 27, 2011
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Autism
by: Anonymous

Kelly f..I would definitely get him tested..I have a 3 year old son who was just diagnosed this October and it sounds like a lot of what he went through

Dec 27, 2011
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Michael
by: Anonymous

Thank you for your posts Michael! My son seems to shake his hands, make facial expressions, and sometimes noises whenever he is not distracted by something. I am learning to feel more comfortable with htese behaviors and am thankful for adults like you that take the time to explain it to us parents:) When you say that you do it all of the time... is it because you enjoy it or want to do it... or do you have to do it to release some pent up energy? Just wondering... as I really want to understand my son as best as I can. Thank you in avance!

Dec 27, 2011
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Answers
by: Michael D

"So interesting Michael D thankyou! How old were you when you decided to do it in private? What did you call it as a child, and did you have trouble explaining it at school?"

I was very young... probably around 4-5. Whenever I became aware that it was "weird", I stopped doing it in public. I would anticipate this is always the case. I wonder if its more likely to be present in males than females as I believe its associated with built-up adrenaline.

We never called it anything and never explained it to anyone. With the internet today, parents have more resources to do research and, in turn, may worry more than they once did. My parents blew it off and I'm glad they did.

Dec 27, 2011
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SAME THINGS
by: Anonymous

My son (almost 4) does the same things (flapping arms when excited and fist gripping sometimes). He never has had any problems with anything else (ie, he's social, super smart, knows all letters, numbers, can write his name, likes lots of different things etc) so I've never thought anything of this behavior. I will bring it up to my pedi but am inclined to not request/allow for any further testing etc. Anyone else think the same thing?

Dec 23, 2011
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My little guy
by: Anonymous

My 3.5 year old son has been bouncing and flapping since I can remember as well. I only just recently started to wonder if it could be "something". He is a very smart little guy and was having full-on conversations at a very young age. He loves anything soft and is sensitive to loud sounds...not necessarily not liking them he just taps his ears when things might be too loud or hectic. His bouncing is cute and everyone loves it and how happy he seems. I have not seen a DR about it and am not sure that I will. It does not seem to be a problem now...however I do wonder if he doesnt grow out of it that he may get teased etc.

I would love to see the study on it as well treens11@hotmail.com
thx :)

Dec 23, 2011
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Michael
by: Anonymous

So interesting Michael D thank you! How old were you when you decided to do it in private? What did you call it as a child, and did you have trouble explaining it at school? Thanks :)

Dec 21, 2011
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I did this, and still do
by: Michael D

Hello all,

I'm a 29 year old male and found this page while googling the "symptoms" of my 3 year old nephew. He does the arm flapping when he gets excited and never gave it much thought because his father (my brother) did it when he was a kid, my father did/does it, and I did/does it still. I figured it was finally time to do some research to figure out what this thing is. My brother would clasps his hands tightly together, thicken and bite his tongue and tense his face up when he got excited. No clue what he does now or if he still does it (but I'm almost certain he still does). My father would clasp his hands around his mouth and blow, but because his mouth was covered, I could never see what he did with his mouth. He still does it. As a kid, I would clinch both hands into a fist and shake both arms quickly. I still do it whenever I get excited. Its weird because it feels involuntary but it isn't. You can start it and stop it at anytime. But I do feel a "release" whenever I quit.

My point in writing this is to calm any fears (at least how it relates to me and my family). Obviously, there's some gene involved and I would recommend asking your husband if he does any of this to try to pinpoint it. It of course is "weird" and I don't let anyone see me do it, but I do it all of the time. My brother had some minor learning disabilities but I don't believe those apply to this. I was "gifted" and have an above average IQ and feel perfectly fine. My father is similar to me.

Dec 13, 2011
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My son is 8 doing it his whole life
by: Anonymous

My son has been flapping or stimming so they called it since 6 months. At 7 years he could finally verbalize it to me himself. He has had an Autism diagnoses since 3 But no longer meets the criteria.(We just have not told the school yet cause if it aint broke.....) He is very smart and social. Top of his class for math and english. But he has never...Since 6 months stopped...ticking as we now call it.After 3 years of Autism courses to certify myself and thousands on OT.It is a tic with my boy. There is no sensory seeking. It enhances his imagination..His experiences. Also when he is board. It's fun for him. Never ever does he tick when he is sick..tired or angry. Doctors say peers will make him more aware to where he does not do it at school. That has not happened yet. He does it by staring, grunting, changing his breathing or holing his breath, stiffening his body.... But ya know. He's a very very happy child and I think he's perfect!! Good luck to you guys.

Dec 10, 2011
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hand flapping
by: Rachele

My 11month old son flaps his hand and pulls his leg up to his chest. He cant crawl yet and when he stands he bounces.

Dec 08, 2011
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to John M
by: Anonymous

Hi John, my son who is 4years old, tends to sit 'froggie style', with his knees bent backwards, like you have described. sometimes he cross his eyes as well.

Dec 08, 2011
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Study
by: MM

Dr. Freeman, I would love to receive a copy of your study. Could you please email it to me at myrah_maines@yahoo.com.

Thank you.

Dec 07, 2011
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My son has done this for the past 3 yrs
by: Nicole

I did not know what could have been wrong with him. I worry about him so much with all of the other emotional issues in our lives right now. He shakes his hands, runs around the room, and acts like Tigger. I ask him what he is thinking of when he does it and he cannot answer me. I do not want to subject him to numerous tests or drugs that the health insurance company wants to do. I just want people to stop asking me if he is crazy and I know that he is not. When he was little I gave him Soy based formula because I am allergic to Whey protein but if I would have known that I was hurting him in some way I would have not given it to him. Please send me your study on SPD - I need to know more about it. I really worried that he is mean to our dogs and that this could be a cause really bothers me. I just want him to be happy and lead a good life.

formyboys2011@yahoo.com

Dec 07, 2011
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My son has done this for the past 3 yrs
by: Nicole

I did not know what could have been wrong with him. I worry about him so much with all of the other emotional issues in our lives right now. He shakes his hands, runs around the room, and acts like Tigger. I ask him what he is thinking of when he does it and he cannot answer me. I do not want to subject him to numerous tests or drugs that the health insurance company wants to do. I just want people to stop asking me if he is crazy and I know that he is not. When he was little I gave him Soy based formula because I am allergic to Whey protein but if I would have known that I was hurting him in some way I would have not given it to him. Please send me your study on SPD - I need to know more about it. I really worried that he is mean to our dogs and that this could be a cause really bothers me. I just want him to be happy and lead a good life.

formyboys2011@yahoo.com

Dec 07, 2011
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My son has done this for the past 3 yrs
by: Nicole

I did not know what could have been wrong with him. I worry about him so much with all of the other emotional issues in our lives right now. He shakes his hands, runs around the room, and acts like Tigger. I ask him what he is thinking of when he does it and he cannot answer me. I do not want to subject him to numerous tests or drugs that the health insurance company wants to do. I just want people to stop asking me if he is crazy and I know that he is not. When he was little I gave him Soy based formula because I am allergic to Whey protein but if I would have known that I was hurting him in some way I would have not given it to him. Please send me your study on SPD - I need to know more about it. I really worried that he is mean to our dogs and that this could be a cause really bothers me. I just want him to be happy and lead a good life.

formyboys2011@yahoo.com

Dec 07, 2011
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My son has done this for the past 3 yrs
by: Nicole

I did not know what could have been wrong with him. I worry about him so much with all of the other emotional issues in our lives right now. He shakes his hands, runs around the room, and acts like Tigger. I ask him what he is thinking of when he does it and he cannot answer me. I do not want to subject him to numerous tests or drugs that the health insurance company wants to do. I just want people to stop asking me if he is crazy and I know that he is not. When he was little I gave him Soy based formula because I am allergic to Whey protein but if I would have known that I was hurting him in some way I would have not given it to him. Please send me your study on SPD - I need to know more about it. I really worried that he is mean to our dogs and that this could be a cause really bothers me. I just want him to be happy and lead a good life.

formyboys2011@yahoo.com

Dec 07, 2011
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My son has done this for the past 3 yrs
by: Nicole

I did not know what could have been wrong with him. I worry about him so much with all of the other emotional issues in our lives right now. He shakes his hands, runs around the room, and acts like Tigger. I ask him what he is thinking of when he does it and he cannot answer me. I do not want to subject him to numerous tests or drugs that the health insurance company wants to do. I just want people to stop asking me if he is crazy and I know that he is not. When he was little I gave him Soy based formula because I am allergic to Whey protein but if I would have known that I was hurting him in some way I would have not given it to him. Please send me your study on SPD - I need to know more about it. I really worried that he is mean to our dogs and that this could be a cause really bothers me. I just want him to be happy and lead a good life.

formyboys2011@yahoo.com

Dec 07, 2011
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Question to the group
by: John M.

I was conversing offline with one of the people on the blog and we both noted that our sons both tend to sit 'froggie style', with their knees bent backwards. I've always assumed that it was a separate issue from SMD but given his similar experience I wanted to ask whether anyone else has witnessed that in their SMD-child.

He also mentioned that his son tends to cross his eyes which our son has done on occasion. Anyone else?

Thanks,

John

Dec 06, 2011
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Study for marioharrison@hotmail.com
by: Mario H

Dr. Friedman,

I am reading my family and son's story in all of these comments. Would you be so kind as for emailing me your study. That would help me understand what is going on and what we can do about it. Thanks

marioharrison@hotmail.com


Dec 05, 2011
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Study
by: Anonymous

I would like to have a copy of the study if possible.
barbaratgonzalez@aol.com
Thank you!

Nov 30, 2011
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RE: Dont Despair
by: Anonymous

Thank you so much for your post. It's always reassurring to hear feedback from adults that can relate! You said that you do it when you are bored... I noticed my son seems to do it whenever he is not distracted... it's seems to be automatic the second he is not doing anything (playing, talking, engaged in a task, etc). Granted he is only 3 1/2, but I am curious if you automatically engage in these behaviors when bored or if you choose to engage in them when bored??? I would truly appreciate any feedback you or Dr. Freeman could share regarding this. THANK YOU

Nov 30, 2011
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RE: Dont Despair
by: Anonymous

Thank you so much for your post. It's always reassurring to hear feedback from adults that can relate! You said that you do it when you are bored... I noticed my son seems to do it whenever he is not distracted... it's seems to be automatic the second he is not doing anything (playing, talking, engaged in a task, etc). Granted he is only 3 1/2, but I am curious if you automatically engage in these behaviors when bored or if you choose to engage in them when bored??? I would truly appreciate any feedback you or Dr. Freeman could share regarding this. THANK YOU

Nov 30, 2011
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RE: Dont Despair
by: Anonymous

Thank you so much for your post. It's always reassurring to hear feedback from adults that can relate! You said that you do it when you are bored... I noticed my son seems to do it whenever he is not distracted... it's seems to be automatic the second he is not doing anything (playing, talking, engaged in a task, etc). Granted he is only 3 1/2, but I am curious if you automatically engage in these behaviors when bored or if you choose to engage in them when bored??? I would truly appreciate any feedback you or Dr. Freeman could share regarding this. THANK YOU

Nov 29, 2011
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Don't Despair
by: Anonymous

Hi,

I'm 21, I go to UC Berkeley, and I've had similar symptoms my whole life. Don't let these symptoms frighten you if you or your kids have it. My parents were worried when I was younger, but now they accept it as different but normal behavior for me. I can totally control it, and now I only do it in privacy, like when I shower or in my room alone. When I was younger, I use to love to do it on the swings. Its hard to explain, but basically it's like an outer body experience. I think that by closing my eyes, shaking my hands behind my head, and making sounds I cut off contact with reality and go completely into my head. I do it when I really want to get into a deep thought (about time or space or God or something imaginative like that) that requires me to think out side the box. I also do it when I'm bored. When I was younger, I would get teased a little for doing it. I was ashamed, but now I don't care. I have fun, it releases stress, and it helps me reach new conclusions and ask new questions.

Nov 28, 2011
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Soy ?'s
by: Anonymous

Just an FYI regarding Soy milk,

My son who is 3 1/2 was breast fed during his first year- he didn't have a drop of formula and I never drank soy milk.

Nov 28, 2011
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Comment to several posts
by: Roger D. Freeman, M.D.

My advice, if you can -- stop! There aren't enough good studies of enough children to answer such questions about soy, etc. There won't be, probably, for a long time. That will leave you with speculations only, I'm afraid. (We don't even have an agreed upon definition of "stereotypy" for such a study...)

About the facial appearance, the question is easier, I think. Most of our patients who clearly enjoy what they're doing do not show that on their faces in a usual way: instead they may contort their face in a grimace. People don't "look" happy (in a conventional way) when they have an orgasm, or are succeeding in lifting a heavy weight as a weight-lifter, or in many other situations.

Nov 28, 2011
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ME TOO
by: Erica

im 18 and i do that too. I can control it where i dont do it in front of people but I can not control it when im alone. I know its not healthy, I usually get BAD headaches afterwards. HELP!

Nov 25, 2011
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Soy formula
by: kelly f

Orin, my son, was breast fed for 2 weeks and then on presidents choice regular formula until 1 year old. He is on 2% cows milk now. He doesn't seem to be in pain while grimacing, but rather does it to remove the sense of sight. Also walks around with blanket on head....

Nov 25, 2011
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Soy formula use
by: Amy

I am curious if any of the children with these symptoms were fed soy based formulas as infants. My son was put on soy formula while still very young and I have always wondered if that may have played a role in his developing stereotypy. Soy formula has high levels of manganese. Too much manganese can be a neurotoxin. Any thoughts/feedback.

Nov 25, 2011
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?
by: Anonymous

Hi Dr. Freeman,

Any thoughts on why the look of children who hand shake, facial grimace, and make sounds appears painful and tense even though they report it is fun? My son who has SMD just looks uncomfortable when he is doing these behaviors, which is why at times it concerns me. Also wondering if adding facial gestures seems to correlate with a more intense thought? Is there any research indicating that using a mas sager while pregnant can cause SMD? Thank you in advance!!!

Nov 22, 2011
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Study
by: Anonymous

Dr. Freeman, could you please email me your study. My email is alemsami@gmail.com.

Thanks

Nov 22, 2011
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more about orin
by: Anonymous

his evaluation (well, dr appointment) is December 19th. I live in Canada, no quite sure whats what, but we get free healthcare, so 1st step is to get the ball rolling. I suspected autism, but he will make eye contact with me on occasion, and does not arm flap, or tippy toe walk. I did order a chewy stixx for him from a website last week. hope that will help him.he also has partial heterochromia, where one of his eyes is half green/brown and the other half is blue. (he has blue eyes) he doesnt seem to be sound-sensitive, but if I say NO when I am very upset, or if I say "RAAAAR!" (which is what I will say when I dont want to swear)he will burst into tears and get very upset. he has also started with crawling backwards! (even though he can walk)

Nov 22, 2011
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to kelly f
by: Anonymous

kelly f, have you had your son evaluated yet? I would do that, because it sounds like he has more going on than just the motor movements. children who have SMD are usually typically developing children who have these motor behaviors. You've described more symptoms in your post than just the motor behaviors. I'd take him in for an evaluation. Most states do it for free.

Nov 19, 2011
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20 months - not talking
by: kelly f

my son orin is 20 months. he is the 3rd of my 4 children. The others are girls.He doesnt say ma ma, dada, or ANY word. never babbled as a baby.

he can say "cuh" for cup, but its also for catch! he starting saying "nah" but not to anyone in particular.

he often runs from living room around the kitchen island and back again. never walks anywhere - always runs.He spins things like the dog bowl, cans, yogurt containers, his cuppy, everything except toys!

he has starting random grimaces, and shaking his head "no" over & over, again not to anyone or anything in particular. he sometimes smacks his stomach. he does finger flicking, at his lips, or his food. and the SCREAMING!! oh gosh his shrieks could break glass! he doesnt point, or wave. LOVES to be spun in VERY fast circles, clings to me constantly, often stands on his head while aimlessly wondering around.

I speak words to him very clearly everyday "Thats a DOG. can you say DOG?" he does not mimick. me. occasional grunts and squeaks. Rocks while standing up, basically bumping his butt on the back of the couch. very short attention span, doesnt like TV unless its Yo Gabba Gabba.

If anyone has a copy of the study, I am very interested in reading it as well as hearing from any parents whose children already have diagnoses. my email is kewiflamingo@hotmail.com

Nov 18, 2011
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he is now 6yrs
by: Anonymous

He is now 6yrs old and just started grade 1.

Nov 18, 2011
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6th
by: Anonymous

Annon
You left out the most important... How old?

Nov 17, 2011
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Is my son going to be ok?
by: Anonymous

My 6th old son was a "head banger" in his crib. He would sit up and bang the back if his head on the rails while sort of sleeping and rocking. We moved him into a bed and since then he has put his favorite blanket over his head, hums, and rolls back and forth until asleep. Sometimes we hear him doing that in the middle of the night.

When excited he flaps his arms or his hands really fast. He plays make belief hockey and football all the time. He is blunt, but sometimes wont stand up for himself. He is not shy. He asks very inquisitive questions, reminds us of things we said or promised, and has a great memory. He is very sensitive and will cry or scream about some things yet seems unscathed by others. He is a very poor printer and struggles with spelling and phonics. But if he memorize a word he can read it or spell it. His math skills are great. He has a mild speech delay (was profoundly delayed but eat tubes and speech therapy have helped).

He has only been queried with no diagnosis. Any thoughts? Would love to read your report and any other suggested literature. Pinsigns@telus.net

Somedays I think we should just let it go and hope he will grow up to be fine. Other days are hard and I wonder if we should or could be doing more. Does diet help?

Nov 16, 2011
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forgot to include email address
by: CHRIS

censley@ryantrans.com

Nov 16, 2011
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censley@ryantrans.com
by: Chris

I would love a copy of the study as well. My daughter has "shaken" as she calls it since she was a baby. She uses instruments like small stuffed animals, pencils, her hair, etc... Once I asked her why she did what she did and she said she thinks about happy things and things that happen in the shows that she watches. Recently we were going over some spelling words that were brand new to her.. I asked her to spell the words with and without her "shaky".. Result... she was much quicker at spelling while shaking.. Not sure what to make of it, but would like to read more about SPD and Stereotypic Movement Disorder. Thanks!'


Chris

Nov 15, 2011
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Please send me a copy of the study
by: Anonymous

My e-mail is julgrinberg at gmail.com

Nov 13, 2011
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Comments on questions
by: Roger D. Freeman, M.D.

I spent time trying to figure out what was meant by "need," "like," "urge," and so on. I can't decide how to define these words or phrases, since I doubt that human behavior fits into -- and stays in -- such categories. Maybe the question about does a child "need" to perform a stereotypy, or just "like" it can't be settled. Aside from needing supplies necessary for life like oxygen, water, and food, do we "need" our hobbies, interests, creative urges? Is the idea that if we can be sure a child "needs" stereotypy, we'll not try to stamp it out? My point all along has been that we aren't sure why some children like it and when they're very young they largely do what they like until they learn that it's unacceptable or brings unwanted attention in their family or culture. If they grow to be socially aware, they will modify their behavior accordingly, but that often takes years during which parents worry and are lacking faith that that process will solve any social problem. Maybe I just have more "faith" in that process, having followed so many children along for years...

The example of a "diagnosis" of sensory processing disorder or SPD is a problem because there seems to be no good evidence that unusual sensory reactions CAUSE SMD or will "stop" SMD, and sensory integration therapy can be costly. The linkage between the two is loose at best. Many children with SMD do not show sensory peculiarities and some with such differences do not show stereotypy.

Nov 13, 2011
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STUDY
by: Fran

I would like to have a copy of the study as well, if it is possible...
frannytim@yahoo.com
Thank you!

Nov 13, 2011
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I would like a copy
by: Anonymous

This blog is very interesting and informative. I have a child with similar charactaristics and would be very interested in a copy of this study. Please email to justineren2009@live.com. Thanks so much!

Nov 11, 2011
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For adults with SMD
by: Anonymous

Anyone with SMD or Dr. Freeman, Just curious if the hand shaking behaviors are something that is soley pleasurable or if there is a "need" or an "urge" to do them? Also, it appears that when my 3 1/2 yr old son with SMD has a cold, the behaviors are less often. Any thoughts on that?

I also wrote the comment below and meant to include that my son is 3 1/2, and shakes his hands, paces, hums and does facial grimmacing when he is not distracted by anthing else. He has SMD.

Thank you!

Nov 11, 2011
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Concerned
by: Fran

As an infant and toddler my daughter (now age 7 )met every milestone. As she started Pre-K, he teacher would bring to me attention that she was hand-flapping at certain activities and sometimes for no reason at all. I addressed all these issues with our Dr. but nothing was done, the school said she had SPD and we started with OT services at home and school (brushing, compressions, sit cushion, ect.) We saw no improvement in her behavior. She does not handle disappointment very well. It turns into a crying meltdown when things do not go her way. Her Kindergarden teacher believed she didn't have SPD and suggested a Neuro Eval., the Dr. then said she had ADHD with Impulsiveness not SPD. Since then we have been through many different medications. However, she is now in second grade and still seems very stimulated at times, in fact, I feel she is worse as she gets older. I talk to her about the hand-flapping and the grimacing and appears that during these times she is very happy about something. She tells me that she is thinking about things that make her happy, for example she is a big T.V. buff, (we limit what she watches and how long) she tells us she is thinking about certain parts of the shows. She like to jump excessivly on the trampoline at home and appears to be very stimmulated while doing it, her face is grimacing and she sometimes holds her hands up and looks upward. We talk to her about be stimulated and she knows when she is doing it and stops when we say anything. She will tell me if I ask her when she has done it at school or not. She is a very wonderful and very honest child. She is being re-evaluated in four weeks. I just want to help her! I understand she is getting older and other children are asking her questions about why she does what she does especially in the classroom. So as I ramble on my question is, should I allow her to do things like jumping on the trampoline? She says it makes her feel better, even tho she stims most of the time and for long periods of time.

Nov 08, 2011
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Questions
by: Anonymous

Hi Dr. Freeman,

I believe one of the studies you sent mentioned that stereotypies are often involuntary initially but later become voluntary. Can you say more about this? Also, my son mostly does this when walking around the house. Can you comment more on that? It seems he does it when he is using his imagination but I wonder why then anytime he is walking and not distracted he does this. Thank you in advance!

Steven or any other person willing to share,

Just wondering if you could provide more insight on your experiences growing up with these stereotypies. Can you comment on whether or not your family asked you to stop the behaviors? Can you comment on whether or not you "wanted to stop the behaviors" or if you "liked doing it" as some children say. Thank you!

Nov 08, 2011
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About stereotypy in ASD
by: Roger D. Freeman, M.D.

PRAJAPATI:
(1) Why (specifically) is it necessary to reduce the stereotypy?
(2) If the ASD/PDD diagnosis is correct, then a behavioral approach is the only one of which I'm aware that may modify his stereotypy.
My point is that you need to be clear about the reasons for modifying his behavior before getting involved in a project that can be complex and time-consuming (and often expensive) compared with more important parts of his functioning.

Nov 08, 2011
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MY AUTISTIC CHILD
by: prajapati

my son is now six years old now. he has been diagnosed as pdd/autistic child. he goes to a special school, but his jumping and clapping has not stopped . how can i reduce his jumping and clapping

Nov 04, 2011
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Comments on recent posts
by: Roger D. Freeman, M.D.

There's bound to be a lot of confusion! (1) Stereotypic movement patterns are part of ASD/PDD, but not exclusive to that category; many people think that it is limited to children with ASD/PDD; (2) our group of "SMD" has a higher than expected rate of coordination delay, speech delay, ADHD and tics, all of them common developmental differences, so don't assume that if your child demonstrates what we term "SMD" that's all there is, he/she could have anything else. (3) I'm not sure that SMD is a good diagnostic category anyway, because as has been described by many here, their child may be different but not have a "disorder" -- it's others' expectations that can be the problem. (4) The education of health providers has almost always lacked any reasonable perspective on stereotypy, so expect misunderstanding and misdiagnoses and consider yourself lucky if it doesn't occur.

Nov 04, 2011
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Re: Comments for Angela
by: Brian

Angela,
I see all of the described characteristics with my daughter...nearly 3 years old, with one exception.

The speech and walking delays were not present. In fact, she was early with both.

Where walking is concerned, she never crawled... but she dragged herself using only her arms. At nine and a half months, she pulled herself into a standing position and began walking.

Speech came fast and furious at about the same time.

Most people who observe her with books believe that she can read fluently, however this is not the case... While she does recognize some words in print, she is memorizing stories after they have been read to her only one or two times. She will then "read" the book on her own from memory and correlate the story line pretty closely to the correct pages. It seems her auditory and visual skills sinc quite well.

I think she is aware of her flapping and facial tension. When this occurs, I ask if she is excited. Her response is always yes and she immediately stops the gestures.

I wonder if other parents are seeing any indication that their children are aware of the behavior and at what age they are aware.

Regards to all,
Brian

Nov 04, 2011
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similarities
by: Angela

hello everyone, I have been writing in this blog for almost 2 years or so. my son is almost 4 with major characteristics of SMD( flapping hands, jumping as a tiger, pacing. but I have seen other little things that I do not know if they are part of SMD. my son started to speak and walk late around 16 to 18 months, he has a minor delay in fine motor skills, he picks his nose after he finishes flapping hands. He is very smart with a great memory, loves dinosaurs, the solar system, and trains. he enjoys books and he has this amazing imagination. any comments....

Nov 03, 2011
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Concerned GiGi, (grandmother)
by: Anonymous

Dr. Freeman will you e-mail me a copy of your paper please? My e-mail is cynsq@hotmail.com

My grandson since the age of about 18 months when he gets excited rocks back and forth with stiff legs and flaps his arms excitedly. People have started to ask why he does this now that he is almost 2 and 1/2 years old. He actually was a really late walker, (18 months) and didn't talk very much until a little over 2 but once he started putting two words together can say almost anything now. He still has a lot of trouble with walking up a step without holding on and still can't really run, kind of runs stiff legged. He is super smart and has been able to reason and follow directions since before a year old. At 2 had the test for autism and said he was normal. He has an amazing memory and if he does something one way one time he thinks he should always do it that way. We are getting worried and so I would like to read your article. Thanks so much.

Nov 03, 2011
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still searching...please send study to me as well!
by: maci

I'm happy to have stumbled upon this as well. Please send me or if someone can forward to me this study as well. maycyang@hotmail.com My 3 year old son does the same thing with the hand flapping (started noticing it around 2 yrs) jumping up and down like tigger, and spinning/watching spinning objects. He met all his milestones up until all the other children around his age started speaking and socializing. He is delayed in speech still. Overall he is a happy little guy, likes to keep to himself, can easily entertain himself, but enjoys others company too. My husband and I feel out of place sometimes because we felt like we were the only ones in the world going through this...as our friends and family members children are "flourishing" and "normal" as what a "typical" child should be like...It's frustrating because so many specialists have concluded/diagnosed him with different things from the time he turned 2 all the way to 3: Autism, low muscle tone, SPD, and now just recently PDD. He shows some 'stereotypical' behaviors of autism, but not enough I suppose in so we are kind of in a limbo of figuring out what is going on. He is going to school and I've seen major improvements.

Anyways, I have to be the one to advocate for him and search for the answers as well demand some results too b/c I realized how so long I've just allowed and relied the specialists to tell me what is wrong and what to do in the mean time which leads us to wait even longer as so many times we stumble upon an open end answer that leads to nothing or more assumptions/questions. Although I do not know anyone here personally, it really helps, so thanks for sharing your stories.

Nov 02, 2011
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to Steven
by: Anonymous

Steven thank you for your comment. It was helpful.

Dr. Freeman could you please send me a copy of the paper from the UK. thank you
pm.dental@hotmail.com

Nov 02, 2011
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Amazing Stuff
by: Brian

I too have a daughter who will be 3 in December.
The exact behaviors described are present.

Like many others who post their experiences, she seems, and her doctor believes, she has advanced skills at this point<<< two years advanced.

Her social behavior appears appropriate and perhaps a bit mature for her age and her peers do not seem to notice the excited gesturing at this point. This, it seems, is apparent only to children nearing their teens and adults.
Dr. Freeman.
Could you please email me the paper as well?..Thank you in advance.
bschenkgc@hotmail.com

Nov 01, 2011
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Thanks for everyone's input - quite an education!
by: John

It is great to see how many people have experienced the same thing with their child. Our son has been flapping his arms since he was a baby. Until just recently (he is now 2 1/2) we attributed it to my wife putting wrist bracelets on both wrists when he was a baby in order to get him to use him arms more. Of course he stared at them and tried to shake them off, hence the misdiagnosis.

What I find most intriguing is how the majority of people here have mentioned how their children appear to have above-average intelligence and maturity compared to their peers. Also, an enhanced memory capability. Our son remember bits and pieces from books that we haven't shown him in several months. He too is also quite social and funny.

We now have a one-year old. He is starting to flap a bit but our gut says it is more imitation but time will tell. He sees his brother get excited about something and then start to flap, grimace and engross himself in his own world.

Tomorrow we are taking our son to the Pediatric Neuroligist for the first time. As we have recently moved to Latin America from the States, my gut tells me that SMD may not be as well known here but we'll find out tomorrow.

Dr. Freeman, please do send me the study and please keep it up. Thanks. jmckenna71@gmail.com

Oct 31, 2011
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Clarification
by: Roger D. Freeman, M.D.

JEN:
I don't "offer" this blog! I just lurk here occasionally and comment when I can.
-- RDF

Oct 31, 2011
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Reply to please comment about this...
by: Steven

I suffer from SMD and I would say I have grown out of it but occasionally have the odd controlled lapse and only do it in private.

Oct 30, 2011
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Dr. Freeman studies
by: Jen

http://journals.lww.com/co-neurology/Fulltext/2009/04000/Motor_stereotypy_disorders.4.aspx

http://www.hopkinsmedicine.org/bin/g/q/motor-stereotypies.pdf

I was referring to what I read in the above articles regarding a possible decrease at age 4 and was wondering if that could be due to the correlation of childhood self control development at around age 4... just didn't know if you had any thoughts on that. Thank you for your response. I appreciate that you offer this blog and provide information to parents.

Oct 30, 2011
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Comments on some posts here
by: Roger D. Freeman, M.D.

JEN: There's no evidence to suggest that "overstimulating" your toddler causes stereotypy. A child of 3-1/2 is doing exceptionally well by performing his pattern mostly at home. The usual subsiding of infantile stereotypy by age 4 that you mention doesn't necessarily mean "self-control" so that if a child doesn't by age 4 or so, he/she is lacking in self-control (whatever that means -- it sounds bad, but "self-control" isn't some specific skill. I'd like to know what "studies" you refer to that say by age 3. Many of you who post here seem to have read other posts, but seem to forget that young children with reasonable social awareness gradually shape their stereotypy to make it more private later in childhood, and we rarely see them teased for it. Your worry about it is usually excessive!
AMANDA: a toddler at 28 months doesn't need ANY special treatment for him or her by you or anyone else. That's way too young to even know whether the stereotyped behavior will persist. I think (from our research and follow-up) that all parents worry about later social rejection very early but excessively. It's hard, I know, in these days when everyone thinks there should be a treatment for everything, to realize that that is not necessarily a wise approach. I like to remember John Milton's famous line "They also serve, who only stand and wait" meaning that just being there, available and caring, is itself active and most important; it is undervalued in our time and can seem like "but am I doing everything possible for my child?" You will find out eventually whether there will be continuing problems, but most likely not.

Oct 28, 2011
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please comment about this...
by: Anonymous

hi everybody, my son is 4 years old diagnosed with a SMD by a neurologist. what I was told and what I read in the papers that are available about SMD is that just a few of the children are going to grow out of them, others are going to do the movement and pacing privately when they get older. Is it something that some of you have seen with your children???

I really appreciate your comments???
thank you.

Oct 27, 2011
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more thoughts
by: Jen

Hi L,

I neer noticed any issues with my 3 1/2 yr old who has SMD and a camera. I do wonder if I overstimulated my son as an infant. *I was constantly putting my fingers in front of his face and counting or doing twinkle, twinkle or itsy bitys spider gestures. Does anyone else wonder about this? Dr. Freeman do u have thoughts about this? Thanks!

Oct 26, 2011
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Daughter-4-Similar behaviors
by: L

I have been so worried about my 4 year old daughter when her preschool teacher recently discussed some issues with her fine motor skills with me and some other tendencies that haven't changed in a year (tippy toe walking/facial tension) She has always been a tippy toe walker and runs in place with minor hand flapping when excited watching something. One other thing I noticed is that she will never look at a camera when a picture is taken of her without 10-15 reminders to look-not sure if that is an issue with anyone else on this thread. She is a bright, kind, articulate young girl who participates in much imaginative play and she does well with joint play. We have an appointment with a specialist in a few weeks. I am nervous.

Oct 26, 2011
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Sounds like my son....
by: Amanda

I would really love to have a copy of the study please thegaylards@yahoo.co.uk

My son has twirled his hands whilst watching moving objects since he was about 6 months old. Now he is 28 months old and it is more of a body shake - arms outstretched. Sometimes he sucks in he breath whilst doing it. We have seen 2 specialists who have both stated that they don't think that he is autistic as he is so social and loving and good at joint attention. He does however have a speech delay and avoids prolonged eye contact. He does well in preschool, listens and joins in accordingly. I have only recently stumbled upon SMD as a possible diagnosis....we are totally confused as what to do for the best for him.....


Oct 26, 2011
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To Recent posters
by: Roger D. Freeman, M.D.

I am not at home and have been traveling. When I have access to my computer with the files necessary, I will send them out. Please be patient and remember I can't send the paper if you don't give me your email address! (I'm leaving this message by using my BlackBerry.)

Oct 24, 2011
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Need a copy of the Report
by: Rosh

Hello, my daughter is going through the same and I appreciate all the help I can get. Please forward a copy of the report to me. I greatly appreciate it. My e-mail is shanker209@verizon.net. Thank you!

Oct 24, 2011
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To: Dr. Freeman
by: Anonymous

Hi Dr. Freeman, please send me the article too. My daughter will be 10 next year and it scares me to death when I see her flapping and making facial expressions, sometimes she will shake her head too. We have talked about her behavior and she confirmed that she does this when she is exited. The post from other parents were very helpful and assuring that my child is not alone out there. But how do I cure her ... I am so worried about her. What will the outside world do to her when they see her like this? Will this scar her? Will it go away? Will she like this for the rest of her life?

Oct 21, 2011
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report
by: Anonymous

could someone email me a copy of the report? to countrygoatgirl@aol.com

Oct 19, 2011
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As one ages
by: Jen

Dr. Freeman or anyone else who may be able to address this,

My son is 3 1/2 and has been diagnosed with SMD. His hands shake, his mouth stretches, and he makes noises when he is playing which doesn't necessarily bother me. I do get concerned when he does these behaviors when he is moving around (for example walking into different rooms of the house) when he is not otherwise distracted. I am wondering what these behaviors may look like as he ages. Luckily, he usually does these things in private but I read some people saying the shaking hands may become less noticeable... say maybe in the form of finger tapping, etc. Is there any studies touching on this? I read that self control is usually developed at age 4 so I am wondering if that is why some studies say there is a decrease in SMD at age 4 from age 3. I guess I am wondering if this behavior will look the same as my son ages or if he will learn to make less noticeable gestures if he does them in public. Any feedback or studies touching on this would be appreciated. Thank you!!! Jen

Oct 19, 2011
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Dr Freeman
by: Eloise

Absolutely that is all understandable thanks for your reply I was just interested in any treatments you've heard of, maybe we need to go see someone for behavior modification. By pure smd I just meant he has no other diagnosis. Thanks

Oct 18, 2011
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To Eloise
by: Roger D. Freeman, M.D.

Eloise,
I have never run across a situation just like yours. Behavior modification is the only "treatment" that has been found in published studies to have changed SMD directly, and that one paper wasn't very impressive; in a 4-year old I have my doubts about it, though. I'd really have to know more about your child, even about "pure" SMD that you mention.

When a child doesn't seem to fit into my experience I as a physician want to be especially careful, and careful here not to make statements that could mislead others whose children may be different in ways that I cannot evaluate. When I see a new patient I book 3 hours (although I may not need all that time) and often see the parents separately on a subsequent appointment; I'm sure that you can appreciate the big difference from a comment here.

Oct 18, 2011
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Treatment
by: Anonymous

Dr Freeman - if a child of 4 years has pure SMD is there any treatment that works? The child is aware of being distracted, or asked to stop and gets upset by it being discussed/distracted in any way. Ignoring it tends to result in it significantly increasing in a day to a point of constant movements that inhibit him functioning in daily tasks. Anything you have heard that works to reduce or eliminate? Thankyou Eloise

Oct 17, 2011
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Dr. Freeman - Copy of the study
by: sunita

Can you please forward a copy of the study to my email. Thank you.
sunitan12314@yahoo.in

Oct 17, 2011
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Hand flapping
by: Anonymous

My son is 3 years and 9 months old and has flapped since he could move. He is articulate, clever and physically perfect. When he is excited he jumps up and down on his tippy toes and flaps his arms up and down vety fast. Sometimes he will slap his thighs or chest. If i speak to him he stops doing it. It's very cute at the moment but I hope he grows out of it If he doesn't he may have some teasing/bullying as he gets older but we will help him through it. Good luck everyone, we've all got lovely kids.

Oct 13, 2011
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sailing in the same boat
by: nami

Hi Dr.Roger D. Freeman...can i also get a copy of that research..I am pretty much on the same page and badly need help. My Son is under evaluation process and still yet to find out what exactly going on with him. But he pretty much does the same things as mentioned by mothers in this blog and I am so glad i found this blog that I am not alone..my email is namitani09@yahoo.in

Oct 12, 2011
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To Dr Freeman
by: stephanie

I have been searching out a reason for years as to why my little girl does what she does. She is going to be 4 yrs old next month, and since she was about 6 months old has been flapping her hands and feet whenever watching TV or staring at something. As son as she could stand she also started moving back and forth and couldn't talk until about a year ago. She never even said the da da and ma ma words that all babies say at an early age. Now she can talk but still has trouble getting it out sometimes kind of like a broken record. we took her to her dr and he said it was nervous tics, and would out grow by 4 yrs of age. She has since gotten worse and now shakes her head too, and instead of playing with toys she gets them out and sets them somewhere and stares moving back and forth n shaking hands, or wants u to play with them while doing this. She is very smart and a huge imagination, but I cant get our Dr to think its anything else, can You please help me? If you would send me some info at osakagirl8@aol.com, I would greatly appreciate it.

Oct 11, 2011
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Help
by: August

Sounds exactly like my son ..... He has been diagnosed Severe ADHD (emphasis on the H lol ) and a very high functioning Aspergers syndrome. Hope it helps

Oct 11, 2011
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R They any symptoms of a problem
by: Anonymous

my 9 month daughter. has not yet started crawling...she hates to go to crowded places or any stranger...she cries loudly with her fist tight and hands pulled down and toes upright..and when happy flaps her whole hand and toes upright with excitement and makes her faces like saying oooo...shes sometimes her head like saying no...if somebody calls her.

Oct 07, 2011
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imaginative...
by: Roger Freeman, M.D.

In our study most of the children were described as -- and indeed seemed to be -- very imaginative and bright. But we are not entitled to make a general statement about a group unless we are collecting a representative sample of children, and that hasn't been done and would be difficult go do. That means that every child with stereotypy has the same chance to enter that group to be studied, obviously not true now. Every clinic has a biased sample because there are different forces affecting who is seen (like who reads about that clinic, whose doctor knows about it, what area it draws patients from, how long the waiting list is, whether there are costs, whether the parents know English well and understand the network of service providers who lead eventually to that clinic, etc.).

Oct 07, 2011
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My Son
by: Anonymous

Hi Doctor Freedman,

Could you please send me a copy re: SMD.
amandarh@live.ca Thank you very much. Also, one of the other moms mentioned this too, she was wondering if there was a study regarding the fact that so many of us that note are children with these behaviors seem to be very intelligent and very imaginative. This includes my son as well. If you could maybe touch on this please.

Oct 07, 2011
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mom
by: Anonymous

I have a 4 year old son that flaps and jumps when he sees cars, wheels, running water and very happy about something he did or likes. It started when he was about 18 months old. He was not talking very much at the age of 2 so I asked his doctor whom suggest to have him checked for autism. They said he was not autistic and that he was just behind on development. I thought I would just give him more time. He would like to play by himself rather then with other children at parties or parks and wouldn't say more then yes, no, mommy or daddy.

My son is a very smart little man and is very active. He is very emotional when he sees something sad or hears something sad. He cries when his little brother starts crying or if he hears a soft song on the radio. Me and my husband purchased the 'Your baby can read' package to see if it would help him to start speaking more and it did. He still needs alot of work with speech but he is now speaking in full sentences and can ask for what he wants other then just pointing and making noises. I also have him in a kids zumba dance class with his sister and cousin to help burn some of his energy. He does very well and follows the teacher and has a great time. Through dance he has learned to pace himself and follow along with the class and participate with other kids.

He is now in preschool and doing very well he listens to his teacher and does his work and plays with other children. He still flaps his hands and jumps when he is happy also he still wont tell me what he did in school other then it was fun. But I think he has improved alot over the past 2 years and I believe he is going to be just fine. I love him and I dont think that there is something wrong with him just cause he is not like every other kid. Of course I worry that he will be made fun of when he gets older but me and my husband will be here for him and we will do what we can to make sure that he is comfortable with himself and know that he is loved very much.

All kids are different and they all develop at there own pace sometimes they just need us to give them the time they need. Thank you everyone for sharing your posts.

Oct 06, 2011
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Thank you Dr. Freeman
by: Anonymous

Thank you Dr. Freeman for the additional studies. They are wonderful and are helping me accept that my son has SMD and it is NOT the end of the world. It seems like some adults that responded to this site as well as some parents of SMD children noted a higher intelligence and imagination in their children. Is there any studies touching on that? Thank you- Jennifer

Oct 06, 2011
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The SMD paper, etc.
by: Roger D. Freeman, M.D.

Sorry - I've been too busy to respond right away - but I will send those out.
"SMD" = stereotypic movement disorder, it does *NOT* mean "self-injurious"! (SMD may involve self-injury, but the cases I've seen haven't had any.) The very term "disorder" may be wrong, in that if it's only some people who misunderstand or are bothered by it, that needn't be thought of as a DISORDER, maybe a difference. To be a disorder it should cause impairment other than just misunderstanding.

Oct 06, 2011
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Jumping Jack
by: Anonymous

I would like to get a copy of this study as well:
carrie.babitsky@newellco.com

My son is about to turn 5 in a few weeks and his teacher pulled me to the side to ask if I was aware that he jumps in place (like Tigger) when excited - Have I noticed... Are you kidding... since he was able to walk. We are meeting with his pediatrician next week because she recommended making some changes in his diet... I love how excited he gets and don't want to risk changing Who he is.... he's my happy little man - but I do want to help if there's anything else at all I can do to make him the best he can be!

Oct 04, 2011
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concerns also
by: tiffany

I am curious myself. My son is 2yr old and when he gets excited he gets on his tippy toes and starts like flapping his hands. i wonder if he has some sort of Autism or something. It seems whenever he is excited this happens. what does it mean?

Oct 03, 2011
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summary paper
by: Anonymous

Hi Dr. Freeman, I read your study. I would also love to read the new summary paper if you wouldnt mind sending it to me.
Thanks so much!
shillmant@bellsouth.net

Oct 02, 2011
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new paper for the UK
by: Anonymous

Hello dr. Freeman could you please send me a copy of the paper from UK. thank you.
angelamariad@hotmail.com

Oct 02, 2011
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?
by: Anonymous

Hi Dr. Freeman,
Why is it called SMD if the child is not exhibiting self injurious behaviors? My son flaps his hands and it doesn't appear to be "injurious." Please advise. Thank you!!

Oct 02, 2011
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Mom
by: Anonymous

Hi Dr. Freedman, I would if you could send me the next summary. floyd101@hotmail.com Thank you!

Oct 02, 2011
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Requests for paper
by: Roger D. Freeman, M.D.

"Rachel" asked for a copy of the SMD paper but leaves no e-mail address, so I can't send it to her.

Other newer moms are describing the same features as earlier postings... it seems maybe they didn't read those or don't realize the similarities. All worry about teasing, which is rarely a continuing problem in our group.

There's another summary paper that came out recently from the UK that could be shared...

Roger D. Freeman, M.D.

Sep 30, 2011
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We are normal
by: Anonymous

My son is 4 yrs old. He jumps and flaps his arms when he is excited or happy or proud of himself for doing a project, etc. He also exhibits symptoms of OCD. The general public ask me what is "wrong" with him. Yet, his preschool, Sunday school and pediatrician absolutely adore him and none of these professionals have even slightly suggested "labeling" my son. I maintain we are "normal." He is my only son and a true miracle since I was told at at early age I could not bear children and even with a difficult pregnancy at age 39, we both are living well and healthy today!

Sep 30, 2011
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"Nothing"
by: Anonymous

my son is almost 4 years old, who flaps his hand and paces back and forth since he was almost 2. he was diagnosed by a pediatric neurologist with SMD. he is attending a Montessori school, where the ages in his class goes from 3 to 5 years and 11 months old. a few weeks ago I received an email from his teacher about what to expect from the children in his class, when you ask them what did you do at school today......she said that usually they will say "nothing", so to me since my son has other 8 classmates that do not have a movement disorder, it sounds like normal.
of course as a mother I worry about other children making fun of him, but at the same time I know he will be just fine. he is very smart, friendly, and he have a wonderful imagination. I work in making him a strong person.

Sep 29, 2011
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Any suggestions?
by: Anonymous

My 5 1/2 yr old son has been pacing back and forth while playing with his fingers. He recently started kindergarten, and this seems to have started since then. When we see him doing this and ask him anything (come here, what are you doing, where are you..etc.) he gets very upset with us and sometimes even cries. I then have to explain that I'm not mad, just simply asking him to come her (or which ever). Once we calm him down and ask him what he is doing, he always says "thinking". Usually of some toy he wants to have one day and what it will do, or somthing else that he loves, but he always says thinking. He used to walk around shaking his hands alot, but would never say why, just got upset when we ask him. He is extremely smart, loves to pretend and act, and has an amazing imagination. I am so scared that he is going to be made fun of at school (if he isn't already) because of this, and it breaks my heart. He already says that he doesn't want to go, and when he comes home and you ask what he did, he usually says nothing. He won't get into what they did or are learning.
Is there anyone out there that can help me? Please!

Sep 29, 2011
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Rachael
by: Mom

HI Rachael,

Thank you very much for the info. Can I ask if your husband and son appear to be in a trance when they do it? My son flaps when he's excited but also does hand flapping stereotypies when hes not occupied. Do you notice a difference? I really appreciate learning more especially with older kids and adults. THANK YOU IN ADVANCE! J

Sep 29, 2011
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This is a marvellous discussion
by: Rachel

Both my son (7) and my husband exhibit flapping behavior when they are happy. it isn't something that bothers me and in many ways it reassures me that they are happy.

Both my husband and son are very bright, and my husband has a successful career. So there doesn't much to worry about to me.

I only looked this up as a side because my son is a bit socially underdeveloped and I was looking for tips to help him.

However, I would be extremely grateful if I too could have a copy of the research.

thank you.

Sep 27, 2011
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Agree with to quick to judge
by: Anonymous

I do agree to not diagnosis but mearly suggest as possibilities. As a Mom who is not a doctor but has been told by doctors that my worries or concerns are nothing or,I am imagining it or I am the crazy one.

My son was diagnosed in a shopping cart by some stranger who saw I was struggling with him and suggested I look into Sensory Integration which lead us on the path of his ultimate diagnosis of PDD, OCD, Tourette and Sensory.

Moms, Dads, Caretakers trust you gut. If something does not sound or feel right get another opinion.

I hope the people looking for answers here see their health care professional. If you don't agree with them get another one.

For me weeding through suggestions or just venting helps find the answer.


Judy in NY

Sep 26, 2011
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CAUTION!
by: Roger D. Freeman, M.D.

I would like to introduce a recommendation for us all to be careful about suggesting diagnoses based on VERY, VERY skimpy information! "...he always shake his hands,jump and run here and their" does NOT seem like TS to me, maybe stereotypy with or without ASD -- note that mom is asking about AUTISM and some of her other description - also very brief - suggests much more than tics or stereotypy. He should have a proper assessment, starting with a pediatrician probably, and not speculation with so little to go on.

Sep 25, 2011
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Mom to Mom
by: Anonymous

I am the support group leader for Tourette Syndrome.
You can have a tic with out having tourette just so you know.
But this does sound like a tic disorder.
My other son also did this and he did not have tourette or any tic disorder.
I know this may be more confusing but not once you read about TS if you have not, and he does have it then a light bulb will come on and it explains his behaviors. Good luck!
Judy in NY

Sep 25, 2011
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TS
by: Anonymous

I, too, think that it may be Tourette's Syndrome. My son started ticcing at 3 1/2 years old. He was officially diagnosed with TS and OCD at 6. He is now 9 1/2. We went to many doctors and did a lot of research. His tics have waned but his OCD has gotten stronger. Still, he does well in school and has many friends.

Sep 21, 2011
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hand flapping
by: Anonymous

These movements may be signs of Tourettes Syndrome.

Sep 20, 2011
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is this autism
by: worried mum

my son 6.he always shake his hands,jump and run here and their.his teacher he is not following the other kids in his class. he always likes to play alone.he never told me about what happen in the class or whatever his teacher teach him. i worried about my son.can anyone explain me?

Sep 20, 2011
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Paper
by: Anonymous

Could you please email me a copy of this study.
Thank you very much!

gneyla@hotmail.com

Sep 16, 2011
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Diagnosis then treatment
by: Anonymous

So many parents swallow the idea that autism/aspergers less than desirable symptoms are guaranteed. My son was diagnosed with classic autism at 2 yrs old & at that time I was told its incurable... which isn't totally accurate. It's completely treatable which cures the undesirable symptoms i.e. head banging (headaches from crainial swelling), self injury (numbness & tingling), spaciness (altered consciousness from food intolerance), speech issues (diminished cognitive functionality from food intolerance / mineral & vitamin deficiency / imbalance) & more.

After he was diagnosed I applied for & received therapy services. Then I immediately began the GfCfSf diet along with several supplements. The change in my son's behavior, abilities & disposition were profound & immediate! The diet eliminates the inflammation & intoxicating effects that affect an autistic spectrum persons brain/body. Along with supplements & therapy (which is way more effective when on the diet) a child can make great gains rather quickly.

Please for the child's sake try it 100% with no exceptions for at least 3.months, I had to fight my sons fathers family to keep him on the diet. But now they all apologize for not believing me, hes so much better!!

Sep 12, 2011
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Few
by: Anonymous

I wanted to thank the adults that are posting their real life experiences with this here! I can't say enough how it feels to be a mother of a child exhibiting these behaviors and the fears it evokes inside of me. Hearing from adults that are typically developed is SOOO reassuring and allows me to take a deap breath out! Thank you!!! I am so stumped as to how stereotypys are labeled involuntary but yet people learn to control them. Can any adults inform me whether or not there becomes a "built up urge or sensation" when withholding from these behaviors? My son, who is 3, shakes his hands, paces, and hums whenever he is not distracted. Otherwise, he is typically developed. Can any adults say more about this??? I would GREATLY appreciate any more insight that peole can provide. Thanks!!!

Sep 12, 2011
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25 years old
by: Anonymous

I'm so glad I have stumbled upon this page to see other adults exhibit the same behavior. I too sometimes fidget my fingers, often while holding a phone or similar object, while deep in imaginative thought. It's a very private and meditative experience. It isn't so much a "tic" (which would imply an involuntary movement) so much as it is a compulsion that I fully control, and only occurs in company with deep thought and imagination. I come up with my most creative ideas this way it would seem.

It was far more pronounced when I was young, I use to pace while "playing with my fingers" as my family would call it, while making noises like a dinosaur or alien spacecraft (depended on what I happened to be imagining). I would do it in school and get teased, I quickly learned that it wasn't socially acceptable so I did it in private. Unfortunately this was not before teachers noticed and attempted to put me in special ed classes. I only spent a limited time in speech before the realized I didn't belong, but it did impact my self esteem as a kid.

Other than that, I consider myself a completely normal and functioning adult. I would like to know what it is that causes this behavior, though while it isn't detrimental, I also feel it isn't normal.

Sep 11, 2011
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?
by: Just Curious

My son has not been diagnosed with autism. However, he pace and puts flicker his fingers in his face. He paces when he's bored and flicks his fingers when watching TV or in bright lights. I took him to have his eyes checked and was told he flicks his fingers as a means to refocus his eyes...he has astingmatism in both eyes and his left eye is weaker than the right eye (so he's getting vision therapy) as far as the pacing (I don't know). He's non-verbal but communicates with his hands (signing) and he's starting to try and say words. He's been in ST/OT for about a year. He's very smart and catching on extremely fast. He can identify his alphabet, numbers to 25, his shapes and primary and secondary colors. He also can identify about 320 words when asked. My lil guy is 46 months. Any suggestions??? I would also like the doctor's report tina.branch@att.net he's had genetics testing done and all came back fine. He's had a couple MRI's and it showed he had no brain abnormalities. He was born at 35 weeks emergency c-section but his apgar scores were within limits (or so they say) 4 at 1min and 8 at 5 mins. Any suggestions or recommendation will be greatly appreciated. Thank you! If you have questions please feel free to ask on this site or via my personal email.

Sep 06, 2011
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Dr. Freeman-Please Forward Study
by: kate

Can you please forward a copy of the study to my email please. Thank you.

ktv11@hotmail.com

Sep 02, 2011
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8 year old son
by: Anonymous

I have a 8 year old son who too flaps his hand & jumps whenever he hears the noise of vehicles. Since our house is next to a main road, the distractions are frequent. However it is a nightmare for us to make him walk on a busy street. Can anyone suggest a remedy for this

Aug 30, 2011
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Request for Dr Freeman's paper
by: Anonymous

Dear Dr Freeman, I would be very grateful if you could send a copy of your paper to me at a1machi2003@yahoo.co.uk. Thank you.

Aug 23, 2011
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Glad I found this page
by: Anonymous

My son just turned 6 and my son has been flapping his hands when he gets excited since before he was 1. I was never worried about autism because he didnt show any other signs and his doctor didnt see anything else either. After I found this page I googled "primary motor stereotypies" and I am so happy that I did. We were going to see a behavioral therapist this year too. Our older daughter showed no signs of this, but our younger daughter who is now 3 also has some form of this too.

Aug 21, 2011
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Reply to below msg
by: Australian mumma

Hi- if you think he's going backwards I'd see a dr ASAP, otherwise a visit to a pediatrician is probably a good idea. Sometimes when children start to talk in longer sentences they can go through an initial period of being a bit unclear. I think generally primary complex motor stereotypies occurs itself and the child doesn't have anything else going on, but maybe your son has this and is just having a language burst too. But I'd say best see your pediatrician to ease your mind. Goodluck!

Aug 21, 2011
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My son
by: Anonymous

My son is three years old and also seems to flap his hands and run around and he also makes strange noises, when he is excited or bored. He also seems to do it at the dinner table. Also he seems to have a speech problem as he used to talk fine now he seems to mumble a lot and speaks too quickly. We have tried everything we can. Can anyone help?

Aug 21, 2011
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Continued...
by: Australian mumma

Sorry I just re read every response going back several years! And realized this diagnosis was already established.

It has taken me over 6 months to work out my 3 year old son has primary complex motor stereotypies.

My readings have told me causes (if it is primary & no other developmental concern) are either genetic or just to do with the neural pathways in the frontal lobe getting a bit mixed up.
I've read it's present in about 5% of population in children and starts very early (my son was 6 months).

Ive read they rarely grow out of it, though it may reduce and peaks at 3 years and reduces from 4 years. Treatment is through behavior therapy- helping your child to recognize when they might start doing it and helping them do a competing action (I've taught my son to clap hands instead). The biggest thing I've had to change is to not draw negativity to it or tell him off, but help him clap hands or distract him instead. I think I'll see a neurologist just to be sure and to keep an eye out for ADHD or obsessive compulsive as these are sometimes also present but I don't think he has this. I've learned lots do just wanted to share with other parents. I'm so glad what my son has isn't as terrible as I thought and already today just not telling him to stop it has made him much happier :)

Aug 20, 2011
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Possible diagnosis
by: Anonymous

You might find this called primary complex motor stereotypies my son has the same.

Aug 17, 2011
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a proud mom
by: Anonymous

I am really feel much better when a read this blog. my son also flaps his hands and jump as a tiger. I decided just to let it be....... every day I was worried about him, how is he going to be at school, if his friends are going to say something that will hurt him, if people is going to stare at him. etc. Now I always look at him to let him know that it's ok to flap his hands, that it is the way he is, and that is fine.
to me the most important is for him to feel loved, no matter what.

Aug 17, 2011
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My story
by: Anonymous

I do not recall and "odd behaviors" from 1-2. Around 2, my son began to flap his hands, stretch his mouth, and make a humming noise. We notice this behavior typically in car rides, before naptime, walking through certain rooms in the house. What confuses me about it, is that it does not occur all of the time. They happen daily but can be very minimal on days and much more clusters on other days. I cannot understand this and am trying to find factors that can contribute to this but am stumped. Thoughts?

It is predictable for the most part and a pediatric neurologist confirmed it was stereotypies. Usually all of the behaviors noted occur together (and when moving to different locations he usually begins to run) but sometimes the hand flapping occurs by itself. It appears almost trance like but is redirect able most of the time and rarely does is when distracted.

My son is very intelligent and social. In social setting, the behaviors rarely occur. He does say he enjoys the behavior but I wonder if that is something we made him believe when we told him he was acting silly due to our own uncomfort with it? thoughts?? I hate admitting it, but there were a lot of stressors throughout his 3 years (husbands loss of job, sick during pregnancy, becoming pregnant when he was 2 and having hyperemesis again). He is now dealing with the stress of being a big brother, starting preschool, and his mom returning to work. I have been reading alot about different behaviors and am frustrated with the lack of information on this and the confusions with other disorders. I tried tracking my sons diet and am not sure that I see any patterns as of yet except it seems to worsen with more sugar. He had blood work done and is only allergic to cats and dogs mildly.

There was one time when I asked him to stop the behavior that he seemed unable to do so and hid his hands under the blanket to "get it out." It broke my heart and I never want to make him feel that way again. I am struggling with what interventions are best for these behaviors and wonder if allowing him to continue acting on them can be reinforcing them. Thoughts? I think for now we will be allowing him to continue these behaviors privately and will only redirect if social inappropriate. I do notice that when he is excited in social settings, he flaps his hands but it is not done in this trance like state that I am describing above and would probably go unnoticed if I wasn't aware of the behaviors in our home and car. He never really throws tantrums and is a great son we are proud of. I often felt like it was an outlet for him to get rid of excess energy but am amazed how he can still need to do this after running around with his friends for a long time.


Aug 17, 2011
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My story
by: Anonymous

When my son was about 7 months, we started to notice mouth stretching and hand and feet twirling (in a circular motion) when excited. It began when playing with certain toys, looking at flags waving in the wind, ceiling fans, and when watching water running out from the faucet. I was on Zofran the majority of my pregnancy.


Aug 16, 2011
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my 4year old
by: worried mom

PLEASE SEND ME A COPY @ dicondina@aol.com

My four year old son has been flapping his hands when he is excited for a long time now. The dr. told us that he was going to eventually grow out of it, but he hasn't. I was told to send him to an occupational therapist, which I am now looking into, but I am beginning to get concerned because I am noticing that he is beginning to jump now when he is excited. He is aware that he is doing it, and when I interrupt him during it, he tells me he can't stop. My dr has also let me know to avoid video games, and these types of things. PLEASE SEND ME A COPY MY EAMIL IS
dicondina@aol.com

Aug 16, 2011
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My baby girl
by: Bret

I have been going through this stuff for the last couple of years! We had a diagnosis of a tic disorder, and the last one, stereotype. I have never heard of this. My 6 year old flips her hands, jumps in one spot, like Tigger, straightens her body out while standing, reaches up in the air. Sometimes she will squeak while she stiffens. She runs every where she goes, not coordinated like for riding a bike, her Quads are huge. She very active, loves people, and new things, but gets easily upset when she doesn't understand something or will one time and not the next. She is very loving, and interactive on her own. None of this makes sense to me.

I feel that her learning is affected as well. She started kindergarten last year only to be put back in pre-k after Christmas. Now we are back in kindergarten, and I'm worried. I just want doctors to stop having wizzing contests, and tell me how to help my baby girl. I would rather have my ears pulled off the sides of my head than get attention for something like this through my baby, but I feel like that what they think. I have three children, and Sky is the only one with this problem. Attention is drawn to her from other children and Adults. She gets embarrassed if you bring attention to what shes doing.

She is on an EIP plan now for school, but her last diagnoses along with what her last doctor says to do, just doesn't make sense to me. How is what she does, be on purpose? How do you teach her not to do something without hurting her self-esteem, without HURTING HER SELF-ESTEEM? She takes FOREVER to go to sleep even after she is wide open all day...Please help me understand her and how to help...AND get an accurate diagnoses...thank you so much:-(

Aug 15, 2011
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Request
by: Anonymous

I have been obsessing over this for awhile now. I will post by observations later but am hoping I am not too late in requesting a copy of the study. It's comforting to know I am not alone. Thank you!!!

Floyd101@hotmail.com

Aug 14, 2011
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I have Asperger's Syndrome, and this behavior is normal
by: Anonymous

I am an 18 year old young adult who has Asperger's Syndrome. At this point in my life, I am able to live a completely normal life like any other teenager. When I was a child, however, I had more severe symptoms of AS. When somebody with AS gets excited or stressed, we do not have the ability to deal with those emotions as a person without this disease does. We feel a rush to our bodies and move in various ways to alleviate the energy. When I was younger, I would do what my parents called "head shakes" where I would move my head around anytime I got excited. This behavior is normal, especially in a child that is so young. I am a straight A student who is currently in college and I live a completely normal life. I have many friends and have been in long term relationships throughout my teenage years. Your child will be fine. This energy is not something that goes away, but as your child ages and becomes more self aware, he will be able to reduce these movements and control them.

Aug 11, 2011
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Lulu's question
by: Roger D. Freeman, M.D.

Yes, it is quite possible to have this without sensory processing disorder. I'm not sure why people assume that the two are very closely related. I think the evidence shows that there is some statistical association, but that it is not very strong.

Aug 11, 2011
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My 4 year old son rocks his body to fall asleep...
by: Lulu

I'm so glad I found this site! I have asked his pediatrician about it and he said it is a form self-soothing. My son has been doing this since he was about 10 months old. He also jumps and flaps his arms when excited. Occasionally, he stutters but is very articulate otherwise. He has no trouble in school and his teachers say he is very smart. Is it possible for child to have these behaviors without having SPD? Thank you. lushionna@yahoo.com

Aug 10, 2011
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8 year old son
by: Anonymous

Can you pls send me a copy of the report: emma.callachor@bigpond.com

Thank you.

Aug 09, 2011
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sensory processing/dyspraxia
by: beckie

delighted to read this page and if you could mail me the paper at ian.barlow@hotmail.com I would be most grateful.

my daughter is 6 now and as soon as she went into reception from day 2 the teachers said she had problems concentrating and said something was wrong. this year we have seen many specialists and bizarrely I have now found out that her cousin suffered from Sensory processing issues too. She caught meningitis when she was 4 months old so assumed her issues were due to that.
She has adapted to school now but similar to the other children always has flapped her hands when excited and also her feet. She has issues now with writing but pencil grips have helped as has physio. she is a great little girl and if anyone can suggest ways to stop her flapping as she loves acting school but as she finds it exciting she flaps on stage which is not ideal. any advice would be gratefully received, thanks all

Aug 09, 2011
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5 years old boy with similar behaviour
by: Sana

Hi there, My 5 years old boy is similar to most of the other kids mentioned here, he would start jumping like a tiger, flap his hands back and forth and when asked why, he would say "im excited". The only thing that he does different is that he starts stuttering every couple of months and then it would go away after a week or two. He started stuttering first when he was put in a daycare two years. Since then it comes and goes.

Besides this he is very bright caring and intelligent boy. Talk like he is atleast 7 or 8.

I will appreciate if a copy of the study could be sent to me as well @ insp_sohail@hotmail.com.

Please and thanks.

Aug 09, 2011
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Study
by: Meghan

Hi there. I was wondering if I could have a copy of the study. My email address is meghan@smartspeechny.com

When my DD gets excited or engrossed, like when we're reading a book or she's watching something exciting, she starts kicking her legs, wiggling her toes shaking her arms and opening and closing her hands. Also her head may shake a little and her mouth forms a very small "O". The "episode lasts maybe 10 seconds, but when she's very tired, it happens much more frequently. She can easily be distracted from doing it, and then she stops. It seems like 99% of the time its in anticipation of something she KNOWS will be excited. Many times, as soon as she's aware she is doing it, she'll stop herself.

She's 22 months at the moment and she's been doing this since she was about 6 months. She is an otherwise normally developing toddler, extremely sociable, has somewhat advanced linguistically (speaking intelligible five-word sentences at the moment)and advanced play skills and thus far does not exhibit any other signs of SPD. A side note I was diagnosed with ADD at age 21 so I'm half expecting her to be diagnosed as well, but at the moment she has no trouble sitting and listening to books or playing with toys for up to five minutes at a time. She does twirl her hair when she's tired and as she's soothing herself to sleep. Does this sound like anything I should be concerned about?

Aug 07, 2011
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Copy of the study
by: Anonymous

Can you please send me a copy of the study. Thanks.
Email: cydoni@hotmail.com

Aug 06, 2011
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Life father like daughter
by: Michael

I am 39 years old and have had an issue with flicking my face with my hands and rubbing my hands together when I get excited ever since I was a child. My family still teases me about it and reminds me about how much I used to do it as a child. My wife and oldest daughter are quick to tell them how I still do it. I never held items and shook them, but I would shake my index finger.

It has never stopped me from achieving my goals, and I consider myself very successful and very educated. My friends and family have told me many times that I am quick witted and very social.

Now my youngest daughter has some of the same issues I have, but she shakes things in her hands and paces, I never did, she is quickly brought back out of this when she is called upon or distracted by another person. She tells stories, just as I have in the past, and others have heard her talking to herself while she paces. She is very smart and learns things quickly. She is popular at school and is a bit of a clown, as I was at her age.

For the parents out there that are worried, don't be, academics have come very easy to me just as they have for my daughter.

My family and I have come to embrace it and laugh about it together. I mean everyone knows when the two of us are excited about doing something.

As a side note, I have trouble sleeping sometimes and I tend to be awake until early morning hours. My mind thinks of fantasies and stories and I am unable to fall asleep, and yes I found that my daughter is awake until early morning sometimes.

I have been awake and heard noises in the house and upon going to inspect what the noises were I found it was my daughter who was also having problems with sleeping. I have sat in her room in the middle of the night and talked with her about not being able to sleep because our minds won't shut down.

I do not take any medications for it and I won't put my daughter on any. It is just the way we are!

Aug 05, 2011
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son who paces and flaps arms when in imaginary world or just excited
by: Anonymous

My almost 4-year-old son's behaviors seem consistent with those described here; I'd be grateful for an opportunity to read about your study. My email address is jess.danielle@gmail.com

My son is an affectionate, quick-witted, highly verbal child who flap his arms (which he keeps bent at the elbows during these episodes), often while reading a book or even just looking at a book's cover--especially if it's a superhero comic book, as he's obsessed with superheroes. He'll do this for as long as 10 minutes at a time, and often while crouched on one knee, sometimes "hopping" in this position around the floor, apparently deep in an imaginary world.

He also paces back and forth telling himself elaborate stories, often breaking from his narrative trance only to ask me or his father to continue telling the story to him.

He also climbs on everything: furniture, our car, raised walls along the sidewalk. Every day I take him to the playground to try to get his "climbing energy" out. Not sure if this is a related "symptom" or just part of his being a very active little boy.

He's flapped his arms and kicked his legs when excited ever since he was a baby, and doesn't show signs of stopping now. I'd always just dismissed this habit as one of his eccentricities, but my mother, a schoolteacher, recently urged me to talk to his doctor about it, as she thinks it could be a sign of some kind of neurological issue, especially since he walks on his tiptoes at times. I haven't noticed that his arm flapping has impaired him at all socially at preschool--he has friends--but I'll keep an eye out for possible social consequences of this behavior, assuming he does engages in it at school.

Aug 04, 2011
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"My son doesn't ..."
by: Roger D. Freeman, M.D.

You should have him examined by a developmental pediatrician first of all.

Aug 04, 2011
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my son doesnt talk yet, and walk on his toes
by: Anonymous

I very worried about my sons whos 2 yrs old, he doesnt speak yet, he can say daddy, bye but not always. he walk on his toes, not listening when we call his name sometimes, like spinning wheels... any othe mom with same situation of mine? pls help me....

Jul 30, 2011
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"Anonymous" email address
by: Roger D. Freeman, M.D.

The e-mail address on the last comment starting "copswife" is inoperative so cannot be used to send the paper.

Jul 26, 2011
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Help!
by: Anonymous

My son is 2 and has a speech delay. His father also had one. The thing that concerns me is his jumping. He doesnt flap his arms, but he holds his figures odd. He only seems to do this when excited. I had him tested last wk for ASD, and was told he didnt have it. His doctor seems to think he does, even though the neurologist said he doesnt. He loves being around people, playing with children, and climbs everything. Im so worried about him. I just had a baby and he wants nothing to do with her, but when he thinks in not looking he holds her hand. HELP! You can email me at copswife051207@yahoo.com

Jul 25, 2011
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amazed
by: bishop96

I also did a Google search for arm flapping and pacing and this was the first page that came up. My son (who is 6) sounds EXACTLY like so many of the children on here!! I am just floored. He was diagnosed with ASD and an auditory SPD, but none of the therapies have done anything for the arm flapping or pacing....it's not even flapping all the time. He will clench his fists and pull his arms up..almost like he was getting in a fight and he will bounce up and down on his tiptoes with his mouth open. Sometimes he will bend up and down. The pacing can get intense..he will just go back and forth and be talking to himself. And I too can pull him out of it by saying his name. He has periods where I think he is doing better with it and then some days (like today) are just over the top. He was put on the autism spectrum, although I don't really agree. Now that he is older, he is pretty social (a little awkward with it but not afraid). He is VERY intelligent and grasp concepts way above his age. He taught himself to read in a week. He was put in a remedial reading class on a Monday of one week, by the end of the following week he had been moved to advanced reading.He was also tested for the gifted program. He has a ton of odd birthmarks, so I had him genetics tested. The only thing that came out of that was some missing DNA information on his Chromosome 13. I've done a lot of research into since I had the exact location and haven't been able to find a link to anything that is going on with him. He is a happy, sweet, polite kiddo and all his teachers say he is a great listener. My main concern is just how focused he gets in these pacing spells...they can happen anywhere...home, the store...even crossing the street. And it makes me so nervous! I would love a copy of the paper you guys are talking about...bishop96@yahoo.com

Jul 20, 2011
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daughter toe walks and flaps...
by: Anonymous

My daughter has very similar behaviors. She has flapped and bounced like trigger since she was a baby. She sits on her tailbone and flaps when playing with toys. Toe walk, skips around the house and jumps and flaps out of excitement. Same as your son she is easily redirected.

She is now six very bright and social. She has been to two neurologists who agree she is not at all on the autism spectrum,however have no clear answer to the problems.In fact one neurologist believes the toe walking and hand flapping are unrelated? I don't believe that at all.

Unfortunately all the toe walking has shortened her Achilles tendons and she now needs PT. My personal opinion is it is a sensory issue and I am going to explore that avenue now. Good Luck!

Jul 17, 2011
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Like Father, Like son!
by: Anonymous

I have had some form of this behavior since I was a small child and my son also has this behavior which started when he was around 16 months old. First to explain what I have is a urge to twist my hands or rub my head or open my mouth when I become excited, imagining something new, or stimulated by something interesting. Over time it has decreased but this has been there since I can remember. I am a physician (direct patient care specialty), was the top of my college and medical school class and I am married with two children. I have no social difficulties and have friends I am close to. My Parents had my IQ tested when I was in high school and it was 158. I did have to suppress this behavior when I was a teenager and did not let it be seen in public. It was a way for me to escape into my own inner mind and imagine new things.

My son will flap his hands, twist them, and open him mouth when excited. He is a twin and is the more social of the two. He can and will talk to anyone and speaks in full sentences at age 3. He talks like he is seven or eight and prefers older children to talk to and play with.

While there can be motor disorders and ASD with similar behaviors, many with this behavior are highly intelligent children and adults who have no social issues. Who knows what causes it but I am not worried about it. I try to get my son to control it in public places to prevent bullying later in life but he is a highly intelligent child. He has no signs of ASD, just a little weird movements when he is thinking about something.

I do think this is linked to higher intelligence and is genetic. If your child is otherwise normal, I would encourage more stimulation and learning to keep him from getting bored (this was my biggest problem as a child).

Good luck Parents, at least this in one Dad not taking his child for any medical "testing"

Jul 13, 2011
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So happy to find this page!
by: Diana DeJesus

Hello Dr. Freeman and fellow parents. I am so interested reading this page. I was going to write a detailed story about my son Jason, but it was getting way to long! Instead I will just list some highlights about him.

Jason just turned 4 years old on Monday 7/11. He is a fraternal twin, born at 38 weeks, 7 lbs 1 oz.

The Good:
1. he is super sweet, loving, emotional, funny. Loves to give hugs and kisses.
2. He does well in preschool. He has no problems listening to the teacher, following directions. Teachers say he is very smart.
3. He can read very well for his age.
4. He has imaginative play, and plays well with his sister. He also plays ok in small groups of kids (4 or less).
5. His verbal communication, and receptive communication are good. We don't have any problems speaking with him.
6. He doesn't have tantrums or screaming fits. He adapts ok to change in routine. He transitions ok.

The Questionable:
1. Jumping and hand flapping are my #1 concern. He will do this when he is playing, or sometimes when he likes something on tv. It only lasts for a few seconds, then he stops. He will also stop with no problem if you tell him to. As others have posted, he seems to do it while he is imagining. For example; while playing with his Thomas the trains, he will act out one of the stories from TV, and will jump and flap when he gets to a good part!
2.He has some noise sensitivity. He covers his ears when flushing a toilet. He covers his ears when he THINKS something will be loud or scarey (like on tv). He won't play with water balloons because he thinks they will make a big "pop" sound. Other loud noises won't bother him at all.
3. He likes to play on his own when there are a lot of kids around. I know this can be normal at his age, but it still concerns me. If he didn't play so well with his sister it would really concern me!
4. not a world athlete. He doesn't enjoy playing catch (though he can). He doesn't always like to ride his bike. He gets lazy with peddling, afraid of falling. He LOVES gymnastics.
5. he has trouble holding a pen/crayon. we are working with him, but he gets upset crying he can't do it. Breaks my heart.
6.slightly pigeon toed. I have custom orthotics for his shoes that seem to help.

Any advice or comments would be appreciated. Please email me your report at diana77dejesus@gmail.com. Thank you!

Jul 12, 2011
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Thank You for your comments
by: Anonymous

Thank u Dr. Freeman and TKW from Australia ... these comments made me a lot at ease and soon I will be seeing the development ped...

Jul 12, 2011
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Another adult's story
by: TKW in Australia

I'm in my mid-forties and have had this all my remembered life. In my case it started with high-tensile objects such as coat hangers, pieces of wire, then later became springy twigs or somesuch which I would compulsively twitch or twiddle. When I was small I would find a quiet place and play solo; as I hit adolescence I would carry my twigs as I walked. The purpose of it was to stimulate imaginative play; when engaged in this activity I would go to imaginary worlds and would tell myself elaborate narratives, some wholly fictitious, some inter-related with reality. I didn't need the twiddling to imagine, but the quality of imagining was so much better! My parents made me self-conscious about it and I learned how to regulate such behaviour - it always felt easy to drop and I never felt driven by it. This side of my life has been a constant companion, boon and joy and has made my life rich (even if with strange callouses on my hands!). My sister exhibited almost identical patterns of behaviour and likewise felt it took her into zones of imagination and play. As we grew into adulthood the nature of the play changed but my sticks and pieces of springy metal are still in my hands.

My eldest child has no sign of it but my daughter, now seven, has exactly the same thing as her dad and aunt. I listen to her improvising a narrative as she flicks her index finger at great speed in front of her face, and can hear the stories of classic children's imaginative play. I watched her at gymnastics surreptitiously do the same set of quick gestures whilst lining up for the vault, an expression of how much she enjoys it. She's a sharp, high-achieving kid. But I could tell it was an enormous relief to her when I told her what she did (the family calls it 'mad finger') is something I understood from the inside. It makes the occasional sideways glance from a teacher or adult, or the occasional teasing, a bit easier to absorb.

I appreciate there's a wide spectrum of manifestations in this field, and that everyone's experience differs depending what other factors are at play. But if you've got a smart child prone to the odd weird face and strange movements, chill. It made me feel special and still does.

Jul 09, 2011
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Child with or without autism, and stereotypy
by: Roger D. Freeman, M.D.

I cannot make or unmake a diagnosis at a distance. An ASD diagnosis is complex and requires direct assessment by someone qualified to do it. Your brief description sounds unlike ASD. The stereotyped pattern is quick typical, I think, but everyone should REMEMBER that the pattern does not exclude autism or intellectual disability or any other diagnosis. The formal diagnosis of Stereotypic MOVEMENT DISORDER is for those children without ASD, mental retardation/intellectual disability, or blindness, but it seems that you can't just look at the stereotypy pattern and tell without assessing the rest of the child's functioning.
I'm about to see a child who's not yet 4, whose video I saw at age 2-1/2 and was a typical stereotyped pattern then, but now he has very delayed general and especially intellectual development but not autistic. So no formal diagnosis of SMD, just a description as part of the assessment.

The one aspect that *MAY* be significant is that our typically developing children with SMD (so far) do not use outside objects in their stereotypy, they use their own bodies (ASD children may). So my advice is to keep that appointment.
I'll send you our paper.

Jul 09, 2011
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Request for Dr. Freeman's paper
by: AMerchant

Dr Freeman - Sorry for misspelling ur name in the prior post. My email address is asiyam@yahoo.com.

thanks

Jul 09, 2011
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Question about son's behaviour and request for Dr. Freedman's study
by: AMerchant

Hi

I stumbled upon this page when doing a google search to see if my son's behaviours when excited are normal for a 3.5 yr old or does he need some intervention.

My son is 3.5 yrs old, social, affectionate, intelligent, knows his letters and numbers,phonic sounds, clearly states what he wants, has a sense of humor etc. He started to talk after 2 but now is saying full sentences and phrases. While he follows my directions and directions of others at home, I have noticed he is not as receptive to instructions of new teachers like his new swim teacher etc. He starts preschool in September so that will be his first experience without family accompanying him to school. I am hoping following instructions from teachers will come then.

Since he was a baby, we noticed that when excited (like watching a fountain, or a flag or a truck or a boat at times, ceiling fan), he starts opening/closing his hands and shaking his body and opening his mouth (like saying Oh!). I have asked him to stop (be telling him a butterfly or a bee might flyinto his mouth if he does not close it) and he does but then starts again. This usually lasts 10-15 mins or even shorter (2 - 3 mins) depending on his fascination.

Lately for the past couple of months he has also been pacing around the house with a string of beads (opens his mouth as he twirls them in his hand) but when distracted with some other fun activity (like going swimming or cycling or outdoors) he will willingly give it up.

Lastly, occasionally, when he is nervous but excited at the same time, he has a nervous laughter and looks at others in their eyes and grins from ear to ear (my understanding is he is trying to control his nervous excitement).

Also sometimes he does have a tendency to repeat some phrases that were said but not out of context per se. When I tell him not to repeat, he stops.

I dont think he is autistic given he has strong cognitive skills and can relate to people and their emotions, responds to his name, and is very clear on what he wants and does not want.

Any help on the following issues by Dr. Freedman will be greatly appreciated regarding: Does he have SMD or some sensory disorder that needs intervention and can be controlled by OT or ST? Am I correct in assuming he does not have autism? I am having him evaluated by a developmental pediatrician too but that is not for another month.

Jul 07, 2011
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Request for copy of Dr. Freeman's Paper
by: Amy

Could you please E-mail me a copy of the paper mentioned by Dr. Freeman on SMD? My e-mail address is amyhinton@yahoo.com.

My son has been diagnosed with SPD and Complex Motor Stereotypy and fits the description give of your son. He is very intelligent (just was accelerated from kindergarten to second grade and the principal at his school thinks he will possibly need to be accelerated again.) My only concern with what he experiences is that he has a very difficult time sitting still in school, which is disruptive for him and his classmates.

Thank you,

Amy Hinton

Jun 25, 2011
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Same as others...
by: Anonymous

20 years old, male, student, just for the first time in my life consciously confronted this behaviour! I am working as a writer as a part-time profession, and I realise that as I formulate an image of my ideas, I also fall prey to these "movements"- not sure what exactly, but movements of the arms, close my eyes etc. Have never done this in public, nobody has ever seen me do it, no recollection of parents ever being aware, either. I'm not autistic, but I am diagnosed OCD.

How bizarre it is to read all of these comments! I think I will try to consciously stop this behaviour from now on, lest I develop headaches like others have complained, or worse, get a habit of doing this in public. I can manage fine without doing this thing, probably best to knock it on the head before it becomes an issue.

Jun 23, 2011
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Flapping
by: Anonymous

I am a 21 year old student at UC Berkeley. Since before I can remember, I have had a similar hand flapping experience where I close my eyes, put my hands behind my head, flap, and make weird noises. It only occurs now when I want it to in private. Usually I do it when I want to imagine something for fun (alien or ancient worlds, beautiful girls, tropical islands, etc) or when I am trying to solve something very puzzling (space, God, time, etc). When I was little I would do it while swinging in my back yard. It is very very strange but brings me great comfort and therefore I see no need to change my behavior. I do occasionally suffer mental lapses (only an hours longs maybe 5 times a year...very scary at the time but now rather funny to think about) and what not, but for the most part I could be considered normal. I dont take any medication or anything and I am happier than most people I know.

If you are a parent with child who flaps, I suggest researching Temple Grandin. While your child might not be a genius, it is possible that he or she thinks better by visualizing things rather than using English worlds to solve problems or reflect. Of course this could be completely irrelevant to your child's situation, but non the less I would suggest that you treat you child as normal. My parents ignored my behavior, and I am very grateful. By making very little out of it, I believed that I was just like everyone else with the same opportunities.

I personally thing that flapping takes away from sensory function (sight, sound, etc), so that one can reach the "inner conscious". In other words, its a way to completely enter your own head.

Jun 19, 2011
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Dyspraxia
by: Anonymous

Im not a doctor, but research dyspraxia or apraxia, my son does the same thing hes 5 years old and thats what he was diagnosed with. Hope it helps!

Jun 13, 2011
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Wrong diagnosis
by: Julie

I am looking forward to the day when the autism rates are challenged. Although some may disagree, I feel it is just as harmful to mislabel a child as it is to not get proper help.

Jun 12, 2011
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Children elsewhere on the Web
by: Roger D. Freeman, M.D.

Julie put me onto Motor Stereotypies and there are numerous videos on YouTube, but many of them are disturbing, because they are wrong about assuming autism, and one child clearly has tics, labeled as stereotypies. Some of the comments are completely misleading.
I conclude that many of the parents have been told their child has autism, but it seems unlikely.

Jun 11, 2011
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question
by: Julie

Thanks Dr. Freeman for your response. My bet would be that would be the case.
Is the book you are working on for the general population or a textbook? I would love to read it when it is completed.
Also, there is a facebook group Motor Stereotypies if anyone would like to see that.

Jun 09, 2011
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copy of study?
by: Anonymous

I would also like a copy of the study, please! jennifersbutler@gmail.com. Thank you for the information!

Jun 09, 2011
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email address
by: Dianna

Hi Dr. Freeman,

My husband has recorded a couple of short clips of my daughter doing her, "happy dance" as she calls it. I would love for you to see them. Please email me your email address at- deschoenrock@yahoo.com

Thanks a bunch!

Jun 09, 2011
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Julie's question
by: Roger D. Freeman, M.D.

Julie,

That's a really great question, and I can't answer it, because I don't have the time to track back the children's files to see.

We should have recorded that at the beginning, but it didn't come up at the time. It would be a possible project in the future, but as I say, until I'm finished with my present big book project, I couldn't even imagine doing that!

-- RDF

Jun 09, 2011
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Questions
by: Julie

Dr. Freeman,
I would be interested in knowing if the children in your study who were misdiagnosed as ASD were the same children found to have ADHD or developmental coordination disorder with SMD? Thanks!

Jun 08, 2011
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To Dianna
by: Roger D. Freeman, M.D.

Dianna,

The very limited description you gave does seem like the SMD described by others and in our paper. I'm not sure why you feel otherwise, given the many examples.

If you want to send me a video clip (like you mentioned) from a phone or other standard-format camera, I'd be pleased to look at it, subject to the usual disclaimer that this would be unofficial, because I'm not her doctor. I can send you my e-mail address if you'd like.

Referral to a specialist like a pediatric neurologist would be fine, except you have to realize that some are not aware of SMD occurring in otherwise normal children -- others are.

-- RDF

Jun 06, 2011
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stereotypy
by: Dianna

Dr. Freeman, I'm sorry about the last question, I guess I just assumed that SPD and stereotypy where one and the same thing. I have briefly looked thoughout this website to try to understand exactly what SPD is. Based on some of the questionnaires, my daughter does not seem to fit any of the descriptions. So I guess my question is, is there someone we should see about her Sterotypy, like an OT or a Pediatric Neurologist? Or is this something we should just let be, and when people comment on her hand pumping etc, just to tell them that she is doing her "happy dance"?

Jun 06, 2011
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Dianna's questions
by: Roger D. Freeman, M.D.

Dianna,

Do you really mean diagnosis of "SPD" [=sensory processing disorder]? I don't think there's a direct relationship between that and stereotypy, although some OTs say there is.

I can't be sure about what else to do (if anything), knowing so little about your child.


Jun 05, 2011
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Interest in study
by: Dianna

Dr. Freeman, can you please email me your study? I am also interested in the books that you mentioned in your last entry. Can you list them? Thank you!
deschoenrock@yahoo.com

Also, how do I go about getting my daughter diagnosed with SPD? When I brought up my daughter's hand flapping and bouncing to her Pediatrician at her 3 year well check-up, her Pediatrician just said my daughter was excited and that her actions were normal. Well, my daughter is 4 now, and her "happy dance", as she refers to it, seems to happen more often than it ever did before. If she is not doing something with her hands (sucking her thumb, holding her blanket or playing with something), her "happy dance" almost goes into overdrive. My husband has recorded her doing this on his cell phone. We were thinking that showing this to the Pediatrician along with a copy of your study, will help us in getting our Pediatrician to recommend a visit to a Pediatric Neurologist. Is there anything else we need to do?

Jun 04, 2011
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A clarification...
by: Roger D. Freeman, M.D.

A point of clarification:
On June 3rd "Anonymous" referred to a previous post of mine: "Dr. Freeman said that counseling would help..." but I did *not* say that counseling would necessarily help with SMD/stereotypy itself, it was referring to someone who now still feels "shame" about being shamed in childhood by parents who didn't understand at that time.

I agree that education generally has a limited effect in a matter such as stereotypy, partly because of its association with autism which is getting so much publicity. Even with my colleagues the understanding is still limited, but I'm working on trying to find better ways to spread the word. There are now a few textbooks and reviews that make the point that otherwise typically developing children can have a stereotypy that persists.

Jun 04, 2011
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shaking hand and twisting face
by: indian mom

my son who is 7 yrs old now still shaking (i can't say if it is same as lapping hands) and twisting face but when i call his name he become conscious and stop doing his hand.He have some other problems until he was 3 yrs old like late speech,late walking etc.However many problems have been resolved when i put him in kindergarten called FUNKIDS , they worked upon him as it was small school but helped him in Brain stimulation which helped him not only in speech but also in word power and vocabulary and behavioral improvements.They have recently launched http://my-funkids.blogspot.com/
see if it will help u anyways.

Jun 03, 2011
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label
by: Anonymous

My son has had flapping,jumping, grunting, etc since he was 7 months old. He is now almost 6. I have found the best thing for him was to acknowledge that there is a problem to let people know he has a little "movement disorder" it makes people realize he is not being "weird"or a have a "behavior problem".I don't understand why people are so against a label. What is the big deal? A label is the only way they get the help they need. Is it really any different than a "diabetes"or "Migraine" label. It helps people understand so that the child can be themselves.No need for shame or a lowered self esteem. The other thing I did was work in my son's class. I quickly identified the "popular" kids, or the strong kids. The ones who the others would follow and I started asking their parents for play dates. That in turn gave my son a chance to get to know them better. They now stand up for my son if anyone says anything about his "episodes". Truly, adults are the ones who notice the behaviours, the children don't pay much attention. It did help that I found a small charter school that has one class of each grade so the kids will be together until Jr High. My advice would be to stop trying to find out what and why...you can research to death. I know, I have been doing it myself. What matters now is that my son is super happy, a very gentle and caring kid with a great life. He flaps and dances and grunts at times but it is because he is happy and excited...there are worse things! the behaviours get better and they get worse depending on what is going on in my son's life. I ask if it bothers him and he always responds with "No,it makes me feel good" so that is all I care about.

Jun 03, 2011
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School
by: Julie

I am not convinced that more information would make educators any more tolerate. My son has attention issues and we have informed the teachers but that does not slow the notes home or expectations. I still get the impression they think we can talk to him and make it disappear.

Jun 03, 2011
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Awareness
by: Anonymous

I totally agree that we need to educate our educators about this. But how are we suppose to educate them when we don't know why they do it and how help our children. Dr. Freeman said that counseling would help well its kind hard when no one is taking interest in this diagnosis. Like others said she tried to explain to the teacher and she had no interest. I took my daughter to a counselor in our small town and she went a couple of times and the counselor finally said that she couldn't help because she didn't know enough about her diagnosis. As a parent I would love to make this an awareness but I would like to feel like I know what I am talking about. I encourage Dr. Freeman that has the information to help make it an awareness with parents.

Jun 03, 2011
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To Julie
by: Janet

I agree with Julie. When I ask my son why he does it he tells me it makes him happy. In Kindergarten some of the kids did ask why he did it. It did not bother him when kids asked him this. We are working with him to try and control this while he is at school. At home we don't stop him. My only concern was when his teacher commented on this and said she never seen this before, nor did the special education teacher. I tried to give her a copy of the study and this blog to help educate her on this for my son and future students. She had no interest. She also gave him yellow days (which are warnings) because he jumped up during a story. He needed to get the extra excitement and/or energy out from the story. How can we as parents help educate the teachers and the school to help work with our children and understand why they are doing this?

Jun 03, 2011
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Agree
by: Julie

I have to agree with Dr. Freeman. My sons movements did not bother me until I realized "well meaning" people were associating it with the autism spectrum. My father always rocked and I had my own unique movements as a child. For both of us it was just a part of who were. My son has attention issues and that is a bigger issue. Although, the problems are just school work related. I felt huge relief in seeing Dr. Freeman's study because it gave me affirmation that my son could flap and not be on the spectrum. I do not need the reason why he does it or even a way to control it. My greatest fear are the kids that are doing this and getting unfairly labeled as my son has. And I refuse to accept the spectrum label until I see any social difficulties. My son is 8 by the way and he does seem to control the movements more in public. I noticed for the first time a kid ask him what he was doing and his response was 'I am just happy'.

Jun 03, 2011
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Comments from Angela and "Anonymous"
by: Roger D. Freeman, M.D.

If I may be so bold... I'd like to share a few reactions.

I think you are somewhat missing the point. Variations in human behaviour may never be fully "classified." Some of the patterns you describe will likely become private and so will have *NO* social results that are negative. And most children with stereotypic behaviours that persist have parents who are understandably fearful of the future, but rarely has it become a major problem because the children learn to suppress it in public.
I emphasize that for most children we see this is a variant of normal that stands out as different in early childhood, but is probably NOT a disorder. If this is true, then searching for the right classification is not going to lead to any satisfaction. and is unnecessary, except to avoid wrong classifications like autism and Tourette's. (If it is mixed with other symptoms like tics, ADHD, learning problems, etc., then it is those that may affect the child's life much more.)

Knowledge can be good, but sometimes the "information" that is involved can be a disservice, rather than a benefit.

Feeling "shame" now is most likely a result of the way you are made to feel as a child, does not have to happen, and in fact in our studies it has fortunately NOT been the result for most. Many parents, fortunately, realize after a while that the pattern -- though unusual -- is satisfying for their child.

Counselling might be helpful as for any other feelings that are continuing to be distressing.

Jun 03, 2011
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A little bit of evrything
by: Angela

Hi everyone, please forgive me if my writing and the spelling is not very good, but English is not my first language.
my son who is 3 years-old was diagnosed with SMD by a pediatric neurologist 6 months ago. after that I wanted to take him to one of the neurologist who are specialist in movement disorders. so my options were Dr. Freeman and Dr. Singer, unfortunately Dr. Freeman was so faraway from where I live, so I had an appointment with Dr. Singer. Dr. Singer serves as director of Child Neurology at the Johns Hopkins hospital in Baltimore. He did not say anything different of what I already know about SMD, but when I asked him about the researches, and what is it been done to find out the origin, cure or treatment for SMD, He said that there are a few of researches in progress, but it takes time to collect samples, get result, interpreter them and then have conclusion. so I guess we have to be patient, I know there are people who really care about our children.
As a mother sometimes is very frustrating not having an answer for what causes SMD. I know one day we will have it.
One of my worries have been bullies at school, and how people is going to look at him when he does it. 6 months ago I did not think about those things, lives was with not worries, but now that I realized SMD is probably not going any where, that he might have it for the rest of his live, I made a commitment to my self. I decided to work in my son's self-esteem. I want him to be prepared for bullies, for looks, for anything related with his movements. I have been reading a book by Lawrence Shapiro(How to Raise a Child with a High EQ), which has helped me a lot, it has very good tips.
well I just wanted to share........
thank you for this blog. please continue writing.

Jun 02, 2011
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I've experienced this myself
by: Anonymous

Hi there,

On and off over the years I've tried to do a little research in order to try and categorize just what kind of "disorder" I may have, and while it seems to me that a lot of the descriptions on this blog--mostly from parents describing their children's odd behavior--fit the bill in terms of what I myself experienced, there doesn't seem to be any clear-cut explanation for just what it could be.
I can tell you that when I was very young I developed an obsessive behavior in which I would go into what can best be described as a trance-like state (one other post mentioned a little girl who seemed to do the same thing with ribbons and Barbies). When I was a kid, the object of my fixation was treasure trolls--the weird looking ones with the long hair that were big in the 90s for a while. When I would get really excited about something, I suppose, I would enter this kind of trance, using an object, typically one of these trolls, in some sort of ritual to exorcize these intense feelings. I would grimace, make clicking sounds--very weird. As I got a little older and my parents became more concerned, and then angry at my behavior, I became increasingly ashamed and embarrassed. To this day I wish I could classify this behavior, it would certainly put to rest the shame I feel in it. But I can tell you that these behaviors don't go away as children mature, at least not in my case. I'm 26 years old now and this impulse, which is thankfully much less intense than when I was younger, has not gone away completely. I probably have about as much control over it, I'd wager, as a person with Tourette's. But it's also not harmful, at least as long as a child learns that it is not socially acceptable behavior to do in public (it can also lead to headaches, but nothing serious). Regardless, it's great that parents on this blog are taking the time to do some research; my parents were just understandably frustrated and angry at my weirdness.
Overall, I do feel that I'm not an isolated case. If there isn't one already--and I've done some searching on this subject--this pattern of behavior seems to belong to a disorder that has yet to be classified. OCD doesn't quite fit the bill, nor does stereotypic movement disorder, although both share aspects of whatever this is. I know personally it's helpful to read that there are other people out there that have witnessed similar behaviors in their children--I'm sure it's harder to see in adults because you would understandably become adept at hiding it. I welcome thoughts.
Thanks

Jun 02, 2011
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I've experienced this myself
by: Anonymous

Hi there,

On and off over the years I've tried to do a little research in order to try and categorize just what kind of "disorder" I may have, and while it seems to me that a lot of the descriptions on this blog--mostly from parents describing their children's odd behavior--fit the bill in terms of what I myself experienced, there doesn't seem to be any clear-cut explanation for just what it could be.
I can tell you that when I was very young I developed an obsessive behavior in which I would go into what can best be described as a trance-like state (one other post mentioned a little girl who seemed to do the same thing with ribbons and Barbies). When I was a kid, the object of my fixation was treasure trolls--the weird looking ones with the long hair that were big in the 90s for a while. When I would get really excited about something, I suppose, I would enter this kind of trance, using an object, typically one of these trolls, in some sort of ritual to exorcize these intense feelings. I would grimace, make clicking sounds--very weird. As I got a little older and my parents became more concerned, and then angry at my behavior, I became increasingly ashamed and embarrassed. To this day I wish I could classify this behavior, it would certainly put to rest the shame I feel in it. But I can tell you that these behaviors don't go away as children mature, at least not in my case. I'm 26 years old now and this impulse, which is thankfully much less intense than when I was younger, has not gone away completely. I probably have about as much control over it, I'd wager, as a person with Tourette's. But it's also not harmful, at least as long as a child learns that it is not socially acceptable behavior to do in public (it can also lead to headaches, but nothing serious). Regardless, it's great that parents on this blog are taking the time to do some research; my parents were just understandably frustrated and angry at my weirdness.
Overall, I do feel that I'm not an isolated case. If there isn't one already--and I've done some searching on this subject--this pattern of behavior seems to belong to a disorder that has yet to be classified. OCD doesn't quite fit the bill, nor does stereotypic movement disorder, although both share aspects of whatever this is. I know personally it's helpful to read that there are other people out their that have witnessed similar behaviors in their children--I'm sure it's harder to see in adults because you would understandably become adept at hiding it. I welcome thoughts.
Thanks

Jun 01, 2011
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UPSET
by: Anonymous

My daughter was diagnosed with Sterotypical Movement Disorder a few years ago. She is now 5 yrs old and still does it. She is out of school for the summer and the hands have been going ever since. She didn't do her hands in class, as her teacher said she never notice her doing it. As school is out she is bored and she has been doing her hands so bad. I'm having a really hard time with it. I have read so many post and comments about hand flapping and that they will grow out of it and doctors say its nothing to worry about and read post of people of having normal lifes. My problem with it is that no one wants to spend the time to find out why our childern are doing this and what causes it. Was it something at birth, was something I did while pregnant. I think the hardest things is there is no help for parents that are trying to deal with this. No books, No doctors, and real answer. I'm not satified with the diagnoses of SMD. Because everyone has some kind of little thing that they do. I bounce my knee. Some people bite their nails. But I think hand flapping is a much larger habit. It just upsets me because I don't know the right words to help my daughter or how to explain to people what she doing. I know my daughter enjoys doing her hands and it makes her feel good but it makes me sooo upset because I feel like I can't relate her and understand why she does it but we have no real answers. Just doctors that don't care. Bottom line we as parents are doing everything we can for our children because don't what them to be bullied but really the problem is that we need help understanding why.

Jun 01, 2011
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4 yr old daughter flaps arms etc when excited
by: Dianna

My 4 year old daughter pumps her arms (almost like she's lifting weights, moves her head from side to side, bounces up and down and sometimes rolls her eyes back in her head while she is excited/happy about something. I mentioned this to her pediatrician at her three year well visit and was told that she is just excited. Other than this behavior, she is a very social, smart little girl. She has a very large vocabulary and had no problems developing physically. The only problem I have is that people always seem to look at her like she is "different" when she does this. She started pre-school this year and did wonderfully in it, but sometimes when she got excited, she would do her "happy dance" too close to the other kids and they didn't like her in their space. When I call attention to the fact that she is doing her "happy dance" and tell her to calm/settle down, she usually does for a brief period of time. But it almost seems that she is so excited that she cannot contain herself. I am worried that once she gets older, she will be made fun of by other children. Will she out grow this quirk, or will she be forced to have to hide it from others for fear of being laughed at?

May 24, 2011
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10 year old son with Excitable Body Movements
by: Kathy in NY

You have NO IDEA how heart lifting & eye opening it has been for me after finding & reading this blog. I have felt like I was all alone with my son's "quirky" behaviors when excited or being imaginative. PLEASE email me a copy of the study
on Stereotypic Movement Disorder (SMD) to:

tmacks@rochester.rr.com

I GREATLY appreciate it!!!!!!!!

Thank You,
Kathy in NY

May 16, 2011
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Comments by Angela and Kerry
by: Roger D. Freeman, M.D.

Angela, I don't know what you want a comment on - it's unclear to me, since you haven't specified.

Kerry: most flapping etc. at this early age isn't autism/ASD, but you don't describe anything else about his development, so I can't comment.

May 16, 2011
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son flapping his hands an jumping on the spot
by: kerry

my son is 2 and flaps his arms when excited and jumps on the spot when waiting for something to happen eg. i was just blowing bubbles an hes bouncing on the spot or when looking through a book hes flapping. I've just got really worried reading that about autism, hes due his 2 year check up at the gp's so dont know whether to leave it til then or make an appointment, no one else seems concerned about this though.

May 13, 2011
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to: Anna and Dr. Freeman
by: Angela

Hi Anna, my son is 3 years-old, he was diagnosed with SMD by a neurologist 6 months ago. what you have described about your son, my son also does it all. I think is part of SMD I do not really Know. I wonder if dr. Freeman can say something about it.
could be important if other parents can share if their children also show this things.
thank you for sharing this information, sometimes I feel a little lost, I know they are going to be able to control them. thanks again.

May 12, 2011
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5 year old hand flaps and other things
by: Anna

Our five year old son has been doing hand flapping since he was a six month old baby and we took him to the aquarium and he got excited by the lights in the water! From there, he would flick through the pages of books or spin bowls and make 'aaaaaaaaah' sounds, then once he was about three, the repetitive pacing, handflapping and so on began. This actually coincided with me trying to get him to cut back on sucking his thumb, which he did (and still does) virtually constantly. The hand flapping has mutated over time, and he now does less pacing back and forth, and more flapping while looking at pictures he really likes in books, or when he sees something exciting on the telly. He has started to make sounds to accompany his hand flapping, so it's clear he's enjoying imagining a story of some kind. He gets a bit embarrassed or cross if we interrupt him. We don't mind his hand flapping except that sometimes he gets into such a trance doing it that he could happily keep going for an hour or more, and would rather do that than play with friends or go outside to ride his bike. This seems a pity, and is what makes us more inclined to distract him and encourage him to do something different. The one thing I was wondering is whether other children exhibit other unusual behaviours too? As our son - while clearly not autistic, being very affectionate, social and emotionally aware - did get referred to a speech therapist for being initially slow to talk, and his class teachers this year also mentioned concerns about him being a bit less physically coordinated than the others in his class (eg flat footed running, weak pen control). He walked before he was one year old, so there isn't any wider physical problem we know of, just this general uncoordinated-ness. He also can get a bit over-excited when playing compared to his friends - louder, less aware when it's time to stop goofing around. Besides all this, he seems pretty smart, loves books about history, birds, animals, enjoys wildlife spotting, has a great sense of humour and is a lovely boy. So it's nothing catastrophic, but just this general feeling that he has something going on his mind that we need to be better at understanding and helping him manage.

May 09, 2011
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5 Year old son bounces and flaps when excited or bored
by: Dana

I find all this very interesting and feel like I can relate to what some of you all have posted. I have sort of resigned myself that my son needs this input and as he gets older he find other ways to get that input without being so distracting to others -- I would like a copy of the report if possible dana7714@yahoo.com.
I have read that there is no real treatment, just finding away to incorporate it into our life and make he away since he doesn't realize he does it. I have known kids who have outgrown this and hope that is the case for all of our young children.
Thanks
Dana

May 07, 2011
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Angelman's Syndrome
by: Anonymous

Look into Angelman's Syndrome. They will do a blood test as it is genetic and is often diagnosed as Autism, but doesn't exactly fit the norm for Autistic. They are finding it is a part of the autism spectrum though and the severity of the symptoms will depend upon wither it is a mutation or deletion. Some will never be able to walk, talk or live independently. Others will have normal lives: go to college, get married, have children and careers. Don't be a afraid of it, but look in to it. They are absolutely WONDERFUL children and adults!

Mommy of an Angel

May 05, 2011
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Heather's example
by: Roger D. Freeman, M.D.

Yes, it's possible, given your information. Stereotypies often begin during the first year. A videotape of his movements is better than descriptive words, of course, and myoclonus seems an inadequate label for the variety of patterns you describe. The family history if often suggestive as well.

May 05, 2011
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12.5 month old son
by: Heather

Dr. Freeman- are any of these behavior apparent in a baby? My son has done weird head nodding, shaking, pointing toes, hand flapping, and hand/wrist twirling and eye upgaze since he was about 5 months old. He is 12.5 months old now. He has had 7 VEEGs- because I was convinced that some of the behaviors were seizures. All VEEGs have been normal- the last VEEG was 4 days long and we've managed to capture most of the behaviors during VEEG. He has also had two normal MRIs. His behaviors come and go- one month will go by and I think he's outgrown it all- only to come back with a vengeance. He definitely does more bizarre behaviors when he is tired, grumpy or sick.

He has also had very mild low muscle tone-- although the latest neurologist we took him too feels that his muscle tone is normal. At 12.5 months he can cruise, pull to stand, stand on his own for about 20 seconds, uses pincher grasp, play ball, sign a little and says four words. He seems to be normal despite all the weirdness. We recently discovered that he has allergies- both food and environmental.

To be cautious- I had him evaluation by a speech and occupational therapist and they both told me that his development is in "normal limits."

Our neurologist here diagnosed him with benign myoclonus of infancy. I've done a lot of reading on it- and to me- it just doesn't fit.

Is SMD a possibility? I rocked back and forth most of my childhood (started as an infant) and head nodded from my toddler years until my 20s. Could he have a more pronounced version of SMD than me or is he too young to diagnose? I'd love your opinion.

Thanks, Heather
heatherdixonlowe@gmail.com

May 04, 2011
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Comment to Rachel
by: Roger D. Freeman, M.D.

Description fits the other SMD patterns shown... why try to change it? You've dealt with explaining it to your significant others, so what exactly is the problem?

May 04, 2011
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Correction to previous comment
by: Rachel

Hi again,

Please disregard the spelling mistakes and double posting in the previous comment; it was a long night/early morning and I was sort of excited about finding a site that talked about the problem I've had for years - even if all the other individuals with the problem are very young.

May 04, 2011
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Adult with same symptoms?
by: Rachel

Hi,

Since I can remember, I've had similar symptoms to the ones you describe in your young children. I'm 23 now, straight A's all through school, lead athletic teams through high school and college, finished my undergrad with honors, and am now a graduate student with a full teaching assistantship in biology. Whenever I get extremely excited, feel happy/joy, or am stressed, I end up shaking my hands/arms and head back and forth. My parents thought it was probably from a major concussion when I was 2, but the doctor said then there would be no major neural problems. I am conscious of doing it, and when I realize I am doing it I can stop it - but I really don't want to. I sort of describe it as a release of energy. All through my interactions with friends I tried to hide it - only my parents really saw it. My good friends know about it now and have no problem with it - although they do think it's odd and it causes some laughter. My boyfriend says he's seen me do it as well - but again he doesn't mind. I recently saw a video of me at ~14 on Christmas morning giving a present to my mom. In the video in all the excitement I did my little shake thing. It was the first time I'd actually seen myself do this - and honestly, I was extremely embarrassed. Is there any way to deal with this besides just going with it? In addition are there other associated symptoms as I have also been dealing with a large number of headaches. Thank you.

May 03, 2011
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8 year old flaps arms
by:

May I have a copy of the report as well please, and thanks! donna_morano@hotmail.com.

May 02, 2011
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20 month old shakes head a lot
by: Mino

We first noticed our son shaking his head side to side(from shoulder to shoulder, not like saying no) around 6 months. Later he would rotate his hands at the wrists while shaking his head. While eating in his chair he would sometimes look up with his eyes without lifting his head up, that disappeared after a while, so did the wrist twisting/rotating, probably after he started walking.

Right now if he is sitting he would just shake his head from shoulder to shoulder, if he is standing he would step from one leg to the other while shaking his head. That is mostly what he does right now. Some days he would do it most of the time, other days very little. If I am not mistaken the better he slept and ate and the happier he is-the less he does it. Also sometimes when he walks you can see some head movement, or even a slight movement in his fingers. He doesn't do any hand flapping.

All this is mostly when he is stimulated in some way- mostly bored or angry. Also he would watch TV on the couch, then get up, stand in front of the TV and do it, at night when we try to put him to bed he would stand in his crib and do it.

Otherwise he is a very smart and happy boy, we speak 3 languages in the house and he understands and speaks all 3 well for his age. He knows all the letters in the alphabet, numbers 1-9, colors, likes to sing. He met all of his milestones, most of them ahead of time. He is very big for his age and easily mistaken for a 3 year old.

May 01, 2011
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5 y.o. boy with same sympomes..
by: Anonymous

I would be happy is you send me the report.
Jumping, tiger movements, do it constantly now finds his way to hide it under mask of his toy games....My email: gtlltg@yahoo.com

Apr 29, 2011
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Report request
by: Anonymous

Please email me a copy of the report. Thanks! jpohlman@gmail.com

Apr 28, 2011
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Frustration
by: Anonymous

Just need to vent! We took our son to a pediatric neurologist yesterday and she kept referring to his movements as tics! Of course, he has a diagnosis of aspergers from when he was 5 and she diagnosed it again (he is now 8)based on asking him questions about what would make his mom and dad happy. It really does not take much it seems to get that label it seems. My opinion on why autism numbers are going up? The spectrum is getting so broad that it soon will include everyone!

Apr 27, 2011
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NEED copy of report
by: Anonymous

please send me copy of study! mjparrett@prtcnet.org
Thanks

Apr 27, 2011
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About the paper... and other info
by: Roger D. Freeman, M.D.

I monitor the blog, so for anyone who wants the paper I will send it via e-mail; Ally doesn't have to do that.

Others have mentioned additional points that aren't covered in the paper. I am finishing a chapter in a book that will try to cover all of those, including ones that have arisen here (such as yesterday's about a possible seizure). When it's finished (but before sent for publication) I will probably offer to send it to anyone here who is interested for additional comments. The postings here have been very helpful to me.
-- RDF

Apr 27, 2011
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Request copy of report from Ally
by: Anonymous

Ally, can you please send me a copy of the report. mytwoprettybabies@yahoo.com

Apr 27, 2011
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Comment about possible seizure
by: Roger D. Freeman, M.D.

That is an unusual description, possibly suggesting a minor seizure. I'd have it checked out by the child's physician.

Remember that the presence of stereotypies (or what we term "Stereotypic Movement Disorder") doesn't exclude the possibility of anything else EXCEPT autism as presently defined (that is, if a child has autism we would consider his or her stereotyped behavior to be part of the autism).

Apr 26, 2011
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POSSIBLE SEIZURE?
by: Anonymous

POSSIBLE SEIZURE? Hi - my daughter has been flapping and contorting her face since she was very small - she's 5 now. it happens when she sees something exciting, usually a moving thing like a kite, pinwheel, fountain, and she used to dangle a ribbon and "dance" it. we had her evaluated when she was 3, and were told that it does not appear to be a big problem as it doesn't interfere with anything and she is bright and normal in all other ways. the specialist told us that she would probably outgrow it or learn to control it once she became more socially aware. what continues to concern me, though, is that she doesn't really seem able to control it any better yet, and sometimes, when she has a really "big" prolonged flap, she seems "stuck" in it. a few days ago, at bedtime, she was sitting up in bed dancing a barbie (with long hair, of course)around, and having a really big flap, when she fell back onto the pillow and was motionless for a few moments. then she kind of sat up, and sighed, and seemed very slightly disoriented or as thought she were "coming around." It seems almost like it may have been a very small seizure. is that possible? and may I please have a copy of the report? taabusana@yahoo.com thank you!

Apr 26, 2011
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Janet
by: Anonymous

I agree with the recent post. Thank you so much Dr Freeman. I had the privilege in meeting him personally. He helped ease my concerns and took the time to answer a lot of questions I had regarding my son. My sons pediatrician diagnosed him with a tic. Then I saw another doctor in the office and I gave him a copy of Dr Freeman's study. Not sure if he took the time to read it. Anyway, my son is 6 and I have been on this site for over a year. It is interesting to see how many people that have children that do the same mine does. Thank you again Dr Freeman for taking the time to do this study and to send copies to us. I am interested to see the next study.

Apr 26, 2011
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Thanks
by: Anonymous

Dr. Freeman,
I would just like to thank you for your work in this area. I actually purchased your study to send with our questionnaires for our sons neurologist appointment tomorrow. We took our son to a psychologist 3 years ago and was displeased with her assessment. I often wonder how many parents just accept a misdiagnosis and what damage that does for their children.
Also, I would like to add that as a child I twisted my arms and did some facial grimacing when I thought of something and my dad rocked and still does. I am glad autism did not get so much media attention when we were children or else someone would have wanted to diagnosis us as autistic.

Apr 26, 2011
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copy of study
by: Anonymous

Could I please have a copy of Dr Freeman's study sent to louisemills71@hotmail.com

Apr 25, 2011
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Comment on the last 2 descriptions
by: Roger D. Freeman, M.D.

So far as I can tell without personally assessing them, both of these children fit the description of what we loosely term "Stereotypic Movement Disorder" and seem to have normal development. The descriptions do not seem to fit an autistic spectrum disorder. It is most likely that they will eventually make their pattern private so that it will not be a social handicap if it continues. I don't think it likely that any intervention is needed, other than explaining to people who misunderstand that the child isn't autistic (the most common wrong diagnosis). (I assume that you realize that diagnosing a child at a distance, based upon limited information, isn't perfect.)

Apr 25, 2011
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Should i be concerned
by: Anonymous

My daughter is 4 yrs old and she has been flapping her hands since she was about 2.It happens when she sees moving stimuli such as a mero go round, watching a dora video or water flowing.It seems she gets so excited she can hardly contain herself. She has a terrific memory and her teacher says she can remember everything exactly in the order it was taught even if it was taught 3 months ago.Also, I noticed that when siting in the car seat there is involuntary movements of her fingers and feet moving up an down with some small head movements.Should i be concerned and what are the next steps to take if any.

Apr 25, 2011
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2 1/2 daughter paces and twist/shake hands while holding a ribbon
by: Anonymous

Dr. Freeman,

Our daughter is 2 years, 8 months and was born 6 weeks premature and spent 2 weeks in NICU before we took her home. She began moving her legs and pressing a blanket or soft book to her face as an infant (about 6-9 months old), she holds a blanket to her face and draws her legs to her stomach and releases them to straight, crossing them at the ankles to form an X shape. We call it "crunching" and she has done this in her crib since she was very young, usually when she is falling asleep or when she initially wakes up. She did this more when she was a baby and does it very infrequently now so we figured that it was a baby soothing mechanism that she did and it would go away.

At about age 2, she began shaking her hands and pacing sometimes. She does this with a string, or ribbon, or object like that in her hands. She seems completely content in her own world when she is doing this and it seems to last for a minute or two up to 5 or 10 minutes. Sometimes she talks or sings while doing this pacing and flapping. She generally stops and plays with something else on her own. If we try to stop her by taking her ribbon away, she usually gets upset. Most of the time, we distract her with an activity.

Otherwise, she is a very bright, funny, loving, and sweet little girl. She is very well-spoken for her age, she also speaks a little Spanish and seems to remember absolutely everything. She has hit all her developmental steps so far and is basically potty trained.

We have been trying to research this issue to find out what it might be and if we should be taking any action or steps to deal with it or if it is just something that will eventually go away.

We have mentioned this to her Pediatrician a few times, but it is hard to visualize so we took a video of her pacing and flapping on a cell phone and showed it to her doctor. She is recommending that we take her to a pediatric neurologist for an evaluation. That was last week so now we are waiting and wondering.

Apr 25, 2011
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Comment on 2-1/2-year old girl's patterns
by: Roger D. Freeman, M.D.

This may be a bit more complex than some of the other examples here, because: (1) she needs an object to manipulate, not just her own body; and (2) it takes her ?a while? to respond (but you don?t say how long that is, on average). I?d be interested in a fuller description of her ?X movement? than you provided. Because of her very young age, I wouldn?t expect her to pay very good ?attention in class.? If other aspects of her development (like ways of relating, affection, play with toys, etc.) seem normal, then there may be nothing special to worry about, and time will tell whether this fits well into what is called "Stereotypic Movement Disorder.? Many toddlers this age and younger have self-soothing repetitive patterns to help them fall asleep. Maybe you could report back with a bit more information.

Apr 25, 2011
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2 1/2 daughter paces and twist/shake hands while holding a ribbon
by: Anonymous

My 2 1/2 year old daughter paces from one corner of our house to the other while holding a ribbon and twisting her wrist. I call it pacing and shaking the ribbon or any object that dangles on both hands simultaneously. I guess the hands movement may be refer as flapping as I read in many of the comments. She does not do the pacing unless she has an object that she can hold and shaked like a ribbon, long piece or paper, tags and spoons). She does not do it if she does not have anything in her hand or when she is busy doing other activities like playing with playdoh or going to the park. I let her bring her ribbons in the car and I can see that she moves the ribbon through her fingers and before we go in public I asked her to leave the ribbon in the car or she may lose it. She is okay with that and she do not shake her hands unless she finds on the floor a tag. Also, since she was a baby, when she is tired and before taking a nap, she proceeds to hold a small pillow, book or anything that she can pressed against her face (pretty hard) and then she bends back and forth her legs on an X movement until she falls asleep.

The pacing and flapping while holding an object really worrys me, it takes her a while to respond when I call her attention and when I asked her to stop "shaking" her ribbons, she says that she needs too. She will start school in August and I am very concern that this behavior will affect her paying attention in class. Anny suggestions or comments on what her behavior could be

Apr 05, 2011
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need help
by: Anonymous

i have a son he is 2.5 that does the same thing and i would love if u send me some info on how i can help him stop shavonche13@yahoo.com

Apr 04, 2011
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Very Interesting
by: Anonymous

I have a 2.5 year old great nephew that does the hand flapping when excited. I would be very interested in having a copy of the study sent to me..Gertiewood@aol.com Thanks much.

Apr 02, 2011
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my son does the same thing
by: Anonymous

My son is almost 4 years old. And since he's one he's doing the shaking hands thing, move toes and fingers , and open his mouth.
In the beginning it was a lot more often, but now, when we see he doing it we try to stop him, just by calling his name or making any noise, he will stop.
he's a smart boy, goes to school since he was 2 years.
He love animals, crazy about fishes, ocean, he's a great kid. But this shaking hands thing is concerning me.
Please I would like to have a copy of your report
giselefdc@hotmail.com
God bless

Mar 31, 2011
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Anyone Try Neuro Feedback?
by: Anonymous

I would love a copy of Dr. Roger Freeman's report. My email is jleenheer@comcast.net.

I stumbled upon this site and what most everyone describes is what my 7 and half year old son has been doing since he at least 6 months old. He used to flap his arms with a star-gazing look and mouth open when he appears to get excited. Now, he controls it to his shoulders bouncing up and down with the gaze and mouth open. Though, if you interrupt him, he stops.

I've been looking into neuro-feedback to help him control this. Has anyone looked into this? If you have, did it work?

Like any parent I just want to help where I can. My fear is that when he gets to middle school the kids won't be so nice.

Mar 29, 2011
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I used to do this
by: Anonymous

When I was small, I would flap my hands rapidly if I was excited by anything. It did worry my parents, and they would try to get me to stop, although I don't believe they ever sought medical advice. I am still prone to doing this as an adult (I am now 38) albeit more subtly. I will find myself flapping my hands so that my loose fingers slap together. I only do this is there's no-one else around, which suggests that this type of behaviour can be limited with self control. I'm a trial lawyer - I've never done it in court! I came onto this site as my 2 year old nods his head a lot when running around, and has recently begun some odd facial grimacing, so I'm looking to see what might be the cause of that. Good luck to all of you.

Mar 26, 2011
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Please help!!!
by: Christi

Hi we are experiencing the same thing, if you would not mind could be possibly have a copy of your report as well? Our son is also 3 years old and has the same characteristics as yours! My email is BOWZS@YAHOO.COM. Thank you so much from the bottom of our hearts!!!

Mar 19, 2011
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Very interesting
by: Anonymous

I would also be interested in reading your report.

Thank You,

karengidley@aol.com

Mar 15, 2011
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My 2 yr old too
by: Dave

If possible, I would like a copy of that report too. My email is dlevy_11375@yahoo.com. My son has been waving his hands when he's excited and/or eating. He seems fine otherwise developmentally except that he just won't learn colors. We're not sure what to think though.

Mar 14, 2011
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update
by:

I've already commented twice on this thread, but I wanted to just update everyone on what's happening with my almost 4 year old son. He was doing the same thing as all the others here. Flapping, jumping, pacing. He's not autistic. Some mild sensory issues. Anyway, he's been working with an OT, who is mostly helping him strengthen his core. She's doing exercises with him that focus on his core as well as his arms and legs, but for him, I think his core was the main problem. Since getting stronger, his flapping/pacing/jumping has decreased so much! I'm not sure if it's related to getting stronger, but his OT said that it is. When she first started with us, she told us that once he got stronger it would lessen.

Mar 14, 2011
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New to this.
by: Anonymous

WOW!!! I was looking (googled) for a way to get my 5 year old to calm his jumping and hand flapping... I had NO idea so many others are dealing with this!

He has been evaluated by a team at our school, who thought he was autistic, wanted to put him in special education classes and everything. Since, we have seen a psychiatrist, he seems to think the same, just autistic tendencies. This has all been so tough on him. I recently pulled him out of public school and I am homeschooling him. He is doing really well. He is eating better, and not so nervous or upset all the time. The only issue we are having at home is the hand flapping coupled with the jumping.

I would love for someone to email me (mayesfamily@mchsi.com)this study as well. I feel like I am lost in helping him cope with the desire to flap. He will begin seeing an OT next month. But I would like to know what works best for those here. Being a first hand experience.
Has anyone found anything that is working on their child? I would love to know.

Mar 07, 2011
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Please send study
by: Lost mom

I would love a copy of the study Ally refers to.
kerrydp@visi.com

Thanks!

Mar 07, 2011
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Please send study
by: Anonymous

Hi Ally,

Can you please email me the study as well. I have a 7 year old who has been pacing and flapping his arms as long as we can remember. We are really struggling with the school since he is getting punished for his pacing in class. He ends up losing a privilege in class and then reacts with crying which sends him to the office. The kids in school often pick on him due to his pacing and crying when he is asked to transition quickly. Or they tease him for flapping his arms. I am at a loss on where to turn. We are starting him in OT but I am not sure what to do about school with the teacher or other students. It is a small school and he is getting labeled and being shunned. It is breaking my heart. How can I help the teacher work with him in school. He is a great student academically just can't control his pacing, flapping and crying when asked switch gears instantly.

Mar 04, 2011
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Bloody nose from flapping
by: Roger D. Freeman, M.D.

May I please advise caution in over-reacting to this as something special about flapping? If this has happened only once, I think it can be seen as an unfortunate accident that could happen lots of other ways than flapping. Young kids just playing around without being careful can injure themselves or others unintentionally. It's nice that he realized that he shouldn't have done it (even though not always fully aware of his flapping) and didn't blame it on something or someone else - good for a 5-year old!

Mar 03, 2011
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flapping and injuring someone
by: Megan

My 5 year old flaps his hands. The other day he was flapping and injured another boy, to the point of giving the boy a bloody nose. The teacher didn't understand what had happened because the boys seemed to be getting along and suddenly one had a bloody nose. My son was very upset and apologetic and said that he hit the boy, but it made no sense. When we finally got the car he told me he had been flapping and accidentally hit him in the face. I feel terrible about it..so does he, my son seems to have no control or awareness of it and I am frustrated and can't figure out what to do about it. Has anyone else ever injured someone while flapping.

Feb 24, 2011
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Cursing..
by: Anthony

Ok, i do this thing with my fingers to where it looks like i'm putting a spell on you or something, lol. Basically I put both hands and hold them a couple of inches in front of my mouth, point my fingers to where i'm looking toward and wingle all my fingers really fast. Some times I'll even hold a pencil with my right hand's fingers and wiggle/shake it to what I'm looking at AND while I'm doing this I'm imagining stuff, for example, I'll imagine, me doing something cool, or beating someone up or winning the lottery or just fictitious scenarios. but i'm such a normal person, I'm 28 years old, Marine combat veteran, I'm married with 2 kids, almost done with my bachelors degree, and am on the road to becoming an officer in the military here soon. I only do it when I'm alone, my wife doesn't even know about it.....I know for a fact that both of my older sisters use to do it as kids also, but I don't know if they still do or not. One of my sisters use to bounce her head face first into the pillow when she would go to bed,she would do it 20 or 30 times in a row. hahaha, but yeah were all totally normal peep. Can I also get a copy of that study of possible. anthonyjpadilla@yahoo.com

Feb 17, 2011
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SMD in the classroom
by: Willow P

My son is in kindergarten and his teacher is very patient and experienced, but she warns me that his inability to sit still will be a problem when he gets to first grade and beyond. He is learning well in school and does fine socially. Thus far we've noted but not done anything about his movement (jumping, pacing and flapping) but now it seems that it could be starting to affect his education. He does understand that he needs to sit still at times but it is clear that he struggles.

Are there any resources that would help us work with him and his teacher/classroom? To help people understand what is going on and how to help him be successful?

I have read and am so thankful for these posts and Dr. Freeman's study and look forward to learning more about SMD.

Feb 14, 2011
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My son flaps too
by: zg

My son is two now and his been flapping his ars,feet and his whole body whenever he is excited about something.. it was cute in the beginning but now we are getting worried about it ... please send me a copy on that report if it helps my son in any way.. thanks zghawi@hotmail.com

Feb 09, 2011
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Movements look like autism but the rest of him doesn't
by: Anonymous

I wondering how many of you have had your child mistaken for autistic because of these movements? My child's movements vary. From hand flapping and jumping up and down to when sitting hand movements that look like that of a belly dancer who is playing the cymbals ( hard to explain) and rolling his head to the side. I guess the best way to explain the difference is whether the excitement is external vs internal. If it is external it is more jumping up and down where the internal is more tense movements along with more spacing out. I have noticed when he does it in the bathroom he will stop if looks at himself in the mirror.

Could I also have a copy of the study?
nurseclod@yahoo.com

Feb 06, 2011
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study
by: Anonymous

please send me the study you are speaking of. my 2.5 yr. old son shows VERY similar characteristics. thanks! pico_77@yahoo.com

Feb 03, 2011
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The 17 year old
by: Anonymous

Well I have always been a shy person. Lately I have been getting better socially. But when it happens in public (which is very rare now since I try not to lose focus) people will stare until someone makes me realize I am doing it. They just ask what is wrong but I am not really teased by them. I only get teased by my siblings. A few times I have caught my sister and her friend watching me and laughing at me, and the same sister and a couple of brothers make fun of me saying I try to fly. I have had things stuck to my head and connected to a portable machine a couple of days when I was younger and no one has ever given me answers of why I do this.

Feb 03, 2011
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question
by: Anonymous

question for the previous poster (the 17 year old): Just wondering if you have ever experienced social problems due to your behaviors? Have you been teased for it?

Feb 02, 2011
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17 and still flapping
by: Anonymous

I am 17 years old and I flap my arms. Usually I will when I am listening to my ipod and I have to walk when I do so. And I like to imagine things when I listen to music. When that happens I flap my arms and hands and I start to pace rapidly and I only stop when someone sees me or when they call my name. Sometimes they have to because I am so out of it. I have been doing this since I was little. And for a couple of years now when I flap my hands my fingers feel like they are swollen at the tips and I notice it a long when I clench my fists which my siblings tell me I do as well. They always comment about it becuase they say it looks like I am trying to fly off somewhere.

Feb 01, 2011
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5 year old With Spastic Diplegic CP
by: Gabe

My daughter shows the same traits as noted by others who have contributed to this article. She was born with hydrocephalus dandy walkers syndrome and diagnosed with CP at the age of 1. When she is excited, focused or needs to pee she shakes her arms (which become rigid) and opens her mouth unknowingly for as long as she is in this trance. I ask her where she is flying to which makes her laugh and stop. She is intelligent and comical. You wouldn't think anything was wrong with her when she is sitting except when she has these tremors. Send study to boardgabe@gmail.com please. Thanks.

Jan 19, 2011
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Use caution!
by: Roger D. Freeman, M.D.

Just a quick comment: We found that a stereotypic pattern can occur in a child with no other problems, OR in a child with ADHD, or LD, or Tourette's, or ASD, etc. Like most other patterns in childhood, it has lots of overlaps. In my opinion, if a child has other issues or developmental puzzles, those should be assessed in their own right, whether SMD is present or not.

Jan 19, 2011
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NYC Mom
by: Ry's mom

Hi
My advice to NYC MOM is for you to change classes for your son ASAP.I have been on this blog for three years and my son has lots of sensory issues but is very social they have ruled out Autism,etc, When I sent Ry to kindergarten I figured they were all alike.Boy was I wrong. He went to our neighborhood school and was there a week. The teacher was strict, harried, had little tolerance. On a fluke I visited another school 15 minutes away. The difference was night and day.I pulled Ry out of the old school and promptly signed him up in the new one. Ryan did so well from day one. He said it wasn't as noisy. The teacher was kind, He loves the kids and the class is small with only 24 kids as opposed to 32 in the prior school. I second guessed myself taking him out of the neighborhood school, was I making him more sensitive instead of making him "buck up"? It has been 6 months and my son loves school, he is thriving, he feels valued and loved. The new teacher understands Ry's need to flap, or just be a little "quirky". Really listen to your child, not every kid learns the same way. Really observe your child in class and if it isn't a place of love and kindness start looking elsewhere.

Jan 18, 2011
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9 month old son
by: Anonymous

My son sticks his arms straight out stiff and waves his hands while his mouth is open in a silent scream. He does this when excited, overstimulated, tired. He started doing this when he was 3-4 months old without the waving/flapping...we called it "the superman". It does seem like it is getting more frequent and with the addition of the flapping of the hands. I'm curious if he will grow out of this or if I should be concerned. Has anyone noticed it this early on their child? We thought it was cute at first, but now we're concerned. He is very social, good eye contact..we're not concerned about autism at this point in time.

Please email me a copy of the study also. thejillcox@gmail.com

Jan 18, 2011
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Flapping and facial expression, excited
by: NYCMOM

My son loves anything that is related to art, he becomes obsessive at times at certain things e.g. Finding Nemo - Fishes - planets - singing - piano ( he learned on his own and became a Mozart fan) - composers - operas - drawing. He does not play with toys and easily breaks them. He flaps his hands a lot and has a tremendous amount of energy. When a baby he watched the whole collection of Baby Einstein, repeatedly. He had some real behavioral issues when he was a toddler and slowly he overcame it. Now he has focusing issues in class. His teacher is very strict. He works well with me at home, but in school he seems to forget everything...maybe its pressure or too focused on behavior than on education because the teacher is so strict. Anyone?

Jan 12, 2011
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Try brushing him
by: Anonymous

Hi,

I would try brushing him twice a day with a special therapeutic brush. You will see improvement in as little as two weeks. You need to have an occupational therapist show you how to brush him. Then you follow the brushing with compressions.

Good luck.

Jan 12, 2011
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My Pride & Joy
by: Anonymous

Hi, I would love to get a copy of the report please to emma@sinclair70.com

My little boy (aged 2.5) has flapped since only being 3 months old. The flapping has become more intense as he has grown older, and now he can walk I find what used to just be contained to his hands and arms is also his right leg which he straightens and stamps while flapping his arms and hands. He seems to do this while excited and also when sensory stimulation is too much.
He has many complications and was born 11 weeks prematurely. Doctors and Consultants originally thought he was autistic but only because we challenged this due to his social interaction and eye contact did they re look at it, where he was then diagnosed as severe cognitive delay - again this diagnosis didn't fit our son, after months of research we found our son has a mixed up central nervous system that isn't speaking to his brain properly, causing massive sensory processing issues, dyspraxia, hypotonia, and behavioural problems. He is 2 and enjoys flapping, he doesn't like to be touched or stopped as he seems to drift off into his own world when doing it, his mouth will open and he will make loud and shrieking noises, he also grimaces and his face tightens.

Doctors have watched him and do not appear concerned by it and he appears to be in no distress intact he seems to enjoy his 'flapping' time. He does get odd looks when we are out and about and I'm sure these will get more as he becomes older, I'm trying to make people understand that he isn't odd for doing it he is just different, and he is my pride and joy.

Jan 11, 2011
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study
by: Anonymous

I would really love to get a copy of the study. gastrek@yahoo.com. Thanks!

Jan 11, 2011
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To "Anonymous" lawyer
by: Roger D. Freeman, M.D.

That's a great history you've given! The only thing unusual at all in what you've described is that you used an object (ribbons) in your "shaking." Most of our imaginative and creative children used their own bodies only.

Jan 10, 2011
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To concerned parents, please dont worry
by: Anonymous

I am an attorney in my mid 20s and I, too, used to shake my fingers or other objects, like ribbons, in front of my face when I was a child. While doing this, I would often create stories in my mind and later write them down. It always felt like a creative outlet or me.

My parents allowed me to do it within our home, but gently reminded me that other people may not understand it, and to refrain from "shaking" (my term for it) while in public. To this day, I still catch myself doing it sometimes, but not nearly as much as when I was young.

For all the concerned parents out there, please do not think that these behaviors are automatically indicative of autism. My mother brought me to a psychologist when I was young and he determined that I wad not autistic. Indeed, my "shaking" never hampered my social or intellectual growth. I am now happily married with a rewarding career. Good luck to all!

Jan 10, 2011
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Hand flapping and grinding teeth
by: Elise

My son is 4 and goes to a school to help with his Autism Spectrum Disorder and Apraxia and goes to speech twice a week. He has improved greatly but lately he has excessively been hand flapping and grinding teeth. I thought maybe with the holidays might of brought this on. Please help me with suggestions and a copy of your study to bears9@aol.com thanks Elise

Jan 03, 2011
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Copy of study
by: Anonymous

Please send me a copy of the study...hornsbyjane@gmail.com. My grandson is exhibiting the wrist twisting, strange sounds, and hand waving.

Jan 03, 2011
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Sorry - one more!
by: Student again

It just occurred to me that I have one other tidbit of information that might be useful to you: my little sister does it too. The flapping, the pacing, the imagining, everything. I'd imagine that she's seen me doing it, back when I did it in front of my family, but she would have been very young. She's thirteen now. And I think the "going to another place" part would be difficult to replicate solely by watching me.

Jan 03, 2011
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Request for the study
by: The "anonymous student"

I just came back to this page and realized that I never asked about the study. My email address is spauling@umich.edu and I would love a copy, and I'm very interested in your book as well. Thank you!

Jan 02, 2011
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my 5 year old does it too
by: Janet

I'm so happy to be reading this website. My 5 year old also does the jumping like tigger and handflapping thing when excited, overstimulated, and during imaginative and creative play. He loves to draw and create stories and will often be in the middle of drawing a picture and jump up and run around flapping his arms and then come right back to continue what he is doing. Often he is talking and telling me about something excitedly while he is flapping too. I have started to gently tell him that there are times and places where it is okay and places that it isn't. I've seen him almost hit other kids while doing it and I have heard other kids ask him what he is doing. I hope I am doing the right thing by discouraging it in crowded places, but it seems learning appropriate self-control is just part of growing up,right? I am very interested in following this website and reading the study. He has had OT on/off with some improvement..but lately with him being excited about the holidays the flapping has been very prevalent which is what brought me to this site.

Jan 01, 2011
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Son had Flapping
by: Janet

It's interesting to read about the baby einstein videos. I have posted on this site before. I have twins and my son does the hand flapping and jumping. They both watched the videos as babies. Not sure if that had anything to do with this or not. My daughter does not do this. I am interested to hear if others on this site also used baby einsten videos with their kids. We did visit an occupational therapist for my son but they did not see any concerns for him to continue. He really didn't do his hand flapping and jumping as much during the therapy. My son new why we were there. I believe he is controlling this in front of others but does the hand flapping and jumping at home. After reading the posts here and speaking with Dr Freeman. I am not as concerned with this as I use to. I realized I'm not alone in this. I do believe in my sons case he will eventually out grow this or just learn to control it more in public. He is smart and a happy kid. My son is 6 and is in Kindergarten. I am very proud of him.

Dec 30, 2010
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4 year old
by: Tabitha

I have a 4year old daughter that sounds just like Elenore's daughter that was on here. She gets excited and waves her hands and arms back and forth with her mouth open and she stares at her hands when she does it. She also will tap her middle finger with her thumb on both hands really fast when she get excited. My daughter is very smart and has developed on time with her age if not more advanced. I would love for you to send me the study to tbyers@warrickcountysheriff.com
I am glad to see that my daughter is not the only one with this.

Dec 24, 2010
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EinstienVideos
by: Shari

My son sounds exactly like yours. He has all the same symptoms and tics. I have always thought the Baby Einstien videos had something to do with it. I even mentioned it to our behavioral pediatrician and Dr Freeman as well. There is something very strange about them. The sensory stimulation and the speed of the transitions were very weird.
I wonder if there have been any studies done on this topic.

Dec 23, 2010
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My Son To A Tee
by: Anonymous

After reading through all the posts (and I did), what a sense of understanding. My 4.5 yr old son fits right in. Bright, happy, engaging and extremely imaginative. He started his movements very early on - 6 mos or so sitting in his bouncy seat, flexing and twisting his wrists. This developed into full arm-flapping (age 1.5-3) and now has transitioned into 'tigger' bouncing w/ a tight grimace and some vocals. It is always related to visual excitement or imaginative play.

Last year at our 1st pre-school parent-teacher meeting, we were surprised to hear that he really hadn't been displaying these movements in class. It appears he had developed a more acceptable classroom alternative - a quick nose-rubbing movement - The teacher asked us if he had allergies. He's now in his second year and doing great.

He has been seeing a behavioral MD every 6 mos since age 2.5 and has been in weekly sensory OT since age 3. While I know all have his best interest at heart, no one has mentioned SMD - You know I'll be bringing it up w/ the MD at our next meeting.

3 things my wife and I were wondering (although they probably have no bearing):
Did anyone else's child :
1) Have a sacral dimple at birth?
2) Take supplemental cod fish oil Omega-3?
3) Watch Baby Einstein videos early on?

Just curious.

Dec 22, 2010
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"Worse"
by: Roger D. Freeman, M.D.

Angela, sounds like many of the other descriptions here. It's important to realize that the intensity and frequency of SMD may vary and seem "worse" at times, depending on various factors, including external stimulation of certain kinds or overstimulation (for example). But overall none of our children's patterns have become worse when the children developed into adolescence.

Roger

Dec 22, 2010
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my son is a mover
by: Anonymous

my son appears to have smd he's an otherwise normal kid but does his movements says he likes to do it ,has been doing it since about 12 mths old now 5 1/2 neuro say they are tics I did my own homework dont think I'm wrong about it being smd naturally as a parent I'm concerned about it becoming an impediment to his journey in life he doesnt do it so much at school has been subtly moved to change tasks by teacher to distract not overtly asked to stop just gently nudged in a different direction not told to stop at home or at least is rarely asked to do so (his kicking) in a different room if I'm having an overload day.anyway I've been watching this for a few years now and could talk as much was delighted to be directed towards the study involving the 42 kids with Dr Freeman .My wife and I have a neutral policy towards it until or unless it becomes a problem for him.Glad to connect with folks who know Peter

Dec 22, 2010
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concern
by: Angela

My son is 3 years-old and was diagnosed with SMD by a pediatric neurologist a few moths ago. He petty much does everything he flaps his hands, wiggle fingers in front of his face, make a sound when he doing it, and Jumps as "tigger". He is very smart, very social, and affective, but I have noticed that now he does it very often more than usual. I would say the movements have increased a lot. I am wondering if I am missing something here or is part of the SMD pattern. Can anyone have a comment? I will appreciate it. thanks.

Dec 20, 2010
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Also interested in reading the study
by: Jay- ECSE teacher

Hello,

I am an early childhood special education teacher. We see many children with unusual sensory behaviors and have focused a great deal of continuing education time into better understanding SPD. It is not unusual for our special education team to see typically developing as well as mildly delayed children demonstrate behaviors that would worry parents. I would love to read the study/paper to which the posters are referring. jayneice@hotmail.com thank you!

Dec 20, 2010
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21 month old daughter flaps when excited!
by: Anonymous

My 21 month old has been arm flapping with her mouth open (almost holding her breath) since she could sit up. She is bright, can talk, express herself, and has a huge personality. I was concerned that she was maybe autistic, but she is far too bright for that. This article has made me realize that the excessive arm flapping might be diagnosed. Its still cute, so we have never done anything, but I have never seen any other kids do this.

Could you send me a copy of your paper.

nancythepainter@hotmail.com

This is all very interesting, but thanks to the older folks that have posted. The ones that have grown up with SMD and have very normal lives. Very reassuring!

Dec 18, 2010
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Response to my question
by: Roger D. Freeman, M.D.

Thank you all for your support. I will post here what I am writing when it is ready - either section-by-section or perhaps all at once, and will welcome suggestions or criticisms.

Dec 18, 2010
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Son Hands flapping and jumping
by: Janet

Please post any comments. After speaking with you Dr Freeman I understand you are trying to help. I am more than willing to help you with any questions you have as well. Thank you.

Dec 18, 2010
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please post them
by: Anonymous

Please add the comments...if we can help others that would be great. We need to show our children there is nothing to be ashamed of and they do not need to be "fixed" Thank you for all of your hard work and thank you for your very personal approach here on the board. I have worked for Dr's for years and to find someone like you who called me at 11 pm one night or asked to drop by while on vacation to another posters house lets us all know how serious you take your work!

Dec 18, 2010
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Question for site "members"
by: Roger D. Freeman, M.D.

I am almost finished writing a chapter in my forthcoming book on SMD. In trying to adequately portray descriptions of children, I find that many of those on here are the best available, better than I vignettes I could ever create.
Since these are in the "public domain" (available to anyone) is there any reason I cannot or should not quote some?
I could also post the draft chapter here or offer to send it to members for comments.
Comments???

Dec 17, 2010
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To Anonymous
by: Anonymous

My son does do the hand flapping and jumping as well. He is 6 and is in Kindergarten. Do to the suggestion of a doctor, I have spoken to my son and advised it is ok for him to do this at home but at school he needs to work on controlling it. Kind of like burping and passing gas. This is behavior we try to control in front of people but is ok behind closed doors. I explained to him his hand flapping and jumping is not typical behavior at school. He understood and I do see he is working on controlling this. His teacher has noticed it as well. When he is at home I do let him do it but sometimes he gets too excited and I have to tell him to slow down with the jumping and hand flapping. I'm noticing it more again due to Christmas coming and all the fun and excitement happening. I do plan to take him to an occupational therapist next week but I'm beginning to think this may be our only visit. I'll see how it goes.

Dec 16, 2010
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wiggling fingers--can I have a copy of the study, too, please?
by: Anonymous

My oldest daughter (7 yr.) who twirls her hair and sucks her tongue while playing or thinking or working hard at schoolwork also does the following behaviors simultaneously while playing with dolls, polly pockets, etc.: grabs her hair near her face with her right hand, wiggles her fingers while shaking her hair, and stiffens up a bit. It is the same each time--very predictable, and she often makes a little stuttered utterance/noise while doing it. She also seems to lack a bit of control--or is it awareness?--of her noise level. The more she exhibits the behavior during a time of play, the louder she gets. It always occurs during imaginative play.

Anyway, it sounds like she falls in into this category so could someone please send me the study at jennifer.connolly98@gmail.com? My middle child (5 yr.) flaps her hands pretty hard while playing and especially while reading so she definitely seems to fit.

The sound my oldest makes can be annoying (like fingernails on a chalkboard to me!) so I do ask her to not make the noise sometimes when she's doing it right by me. But I certainly don't want her to be self-conscious over it. The pediatrician said we could ask her why she does it but advises against trying to "do" anything as it's something she likely transition to doing just in private. I'd like more information to understand it all better. I and my husband don't want either girl to feel like they have to hide it. Does anyone else ask their child to stop when it's happening in front of them because it's just plain annoying or distracting? Is that bad? It's not so much that I care that they do it; it's more that it can get nerve-wracking when it's happening in front of me. Perhaps that's just my insecurities over how it may come off to others i.e. something that I need to just get over? If it's okay to ask them to stop, how do we explain that they're not doing anything wrong or make them feel ashamed?

Dec 16, 2010
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misdiagnosed?
by: RJsMom

I have found comfort in this blog and in the sharing of everyones stories about their children. I have a 2 year old son who @ 18 months was diagnosed with PDD-NOS. He does handflap tho not so much anymore, now he does what a lot describe as the "tigger"...he has been getting early intervention services for the last few months, and has been making great progress...I'm wondering tho if he was misdiagnosed with the autism spectrum disorder bc he is social and affectionate and able to learn. I am beginning to think it may be SPD or SMD, would you kindly email me the study that is mentioned? Lismndz@aol.com Thank you

Dec 07, 2010
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other behaviors
by: Anonymous

My son also does this thing where he taps obsessively on pictures in a book and flips the pages quickly and goes through the book several times in one sitting. He also wants to recite information about what is in the book over and over like a computer. These seem to be "moments". Like half an hour at a time when he is stressed or when there is too much unstructured time. Does anyone else see these patterns in their children?

Dec 07, 2010
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study
by:

Can you please e-mail me the study ryan_or@hotmail.com

Dec 06, 2010
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please help
by: Anonymous

Hi I am not sure what study everyone is referring to but my 1st grade son has been struggling with this obsessive behavior and flapping ever since he was a baby yet he is mostly socially and academically 'normal'. Could someone please email me this study too? I would be very grateful as I don't know what to do except love him for who he is and keep him physically active and give him lots of different sensory experiences so he can get back in his body! My email address is prapatti@comcast.net

thank you ever so much!!

Dec 03, 2010
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hand flapping
by: Samantha R.

Please send us a copy of the study also at, samantha1rhodus@yahoo.com.

Thanks!

Dec 02, 2010
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5 year old daughter
by: Eleanor

I have read all of these - and omg - I think my daughter has the same thing! I have been so worried.

Please send me the study someone! eyoung@idera.com

My 5 year old daughter has this thing that she flaps her harms and hands when excited (or sometimes I think its random) and opens her mouth up really wide as she is flapping. I tell her "close your mouth" and she does. When she claps her hands, her mouth flys open again. it lasts usually a few seconds. Now she is old enough to get when I look at her, she closes her mouth. But she does it enough that it has concerned me. I have noticed this behavior since she was a year old. She is otherwise normal, very social, very artistic, funny, smart. Its just weird and I wanted to make sure it wasn't something I am missing or need to treat!

Not sure what to do about it.

Thank you!

Eleanor

Nov 30, 2010
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hand flapping
by: Samantha R.

In response to my friends grandchild, he is 5 years old. Approximately he was age 3 when the family begun to notice the different actions as spoke of earlier. If the grandchild starts with the hand flapping, with an item in one hand, the other hand begins to flap, and then he gets excited which leads to jumping up and down, and sometimes will make noises with his mouth. Then my friend can try to distract him from this, he will stop briefly, but begin to do it again.

My friend says it is almost like that is how he entertains himself. Example would be, taking a piece of tissue paper, tearing it into strips, and placing the strips together, and waving the pieces up and down, to watch them flap, this seems to entertain him.

Nov 30, 2010
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Grandchild
by: Roger D. Freeman, M.D.

Samantha,
The info provided is too skimpy to comment on. Age? How easily distracted from pattern? When started? Other areas of functioning? Without that, can't say anything.

Nov 29, 2010
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hand flapping
by: Samantha R.

A friend of mine has a grandchild who enjoys hand flapping, jumping up and down, watching pieces of paper flap while the fan is going. I am trying to help her find out if she should allow her grandson to do this or if she is actually enabling him. Please help!!

Nov 29, 2010
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Your questions and comments are helpful!
by: Roger D. Freeman, M.D.

Having read all the comments here I want to assure everyone that they are more helpful than most entries in books - because they reflect not only children's behavior and development but the reactions of parents and others to these movements, and that's what's often ignored. I hope they will continue, not only for mutual support, but also for what we are writing about SMD. I know it may sound trite, but together it can make a difference.