Son's hand flapping, jumping, head shaking

[?] Subscribe To This Site

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

Comments for
Son's hand flapping, jumping, head shaking

Average Rating

Click here to add your own comments

Feb 02, 2012
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

"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
Rating

Re: labels
by: Anonymous

Thank you for your post. It's refreshing!

Jan 05, 2012
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

Study
by: Anonymous

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

Nov 30, 2011
Rating

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
Rating

Nov 29, 2011
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

?
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
Rating

Study
by: Anonymous

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

Thanks

Nov 22, 2011
Rating

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
Rating

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
Rating

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
Rating

he is now 6yrs
by: Anonymous

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

Nov 18, 2011
Rating

6th
by: Anonymous

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

Nov 17, 2011
Rating

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
Rating

forgot to include email address
by: CHRIS

censley@ryantrans.com

Nov 16, 2011
Rating

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
Rating

Please send me a copy of the study
by: Anonymous

My e-mail is julgrinberg at gmail.com

Nov 13, 2011
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

report
by: Anonymous

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

Oct 19, 2011
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

?
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
Rating

Mom
by: Anonymous

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

Oct 02, 2011
Rating

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
Rating

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
Rating

"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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

hand flapping
by: Anonymous

These movements may be signs of Tourettes Syndrome.

Sep 20, 2011
Rating

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
Rating

Paper
by: Anonymous

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

gneyla@hotmail.com

Sep 16, 2011
Rating

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
Rating

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
Rating

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
Rating

?
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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

Possible diagnosis
by: Anonymous

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

Aug 17, 2011
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

Copy of the study
by: Anonymous

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

Aug 06, 2011
Rating

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
Rating

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
Rating

"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
Rating

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
Rating

"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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

Report request
by: Anonymous

Please email me a copy of the report. Thanks! jpohlman@gmail.com

Apr 28, 2011
Rating

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
Rating

NEED copy of report
by: Anonymous

please send me copy of study! mjparrett@prtcnet.org
Thanks

Apr 27, 2011
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

copy of study
by: Anonymous

Could I please have a copy of Dr Freeman's study sent to louisemills71@hotmail.com

Apr 25, 2011
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

Very interesting
by: Anonymous

I would also be interested in reading your report.

Thank You,

karengidley@aol.com

Mar 15, 2011
Rating

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
Rating

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
Rating

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
Rating

Please send study
by: Lost mom

I would love a copy of the study Ally refers to.
kerrydp@visi.com

Thanks!

Mar 07, 2011
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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
Rating

study
by: Anonymous

I would really love to get a copy of the study. gastrek@yahoo.com. Thanks!

Jan 11, 2011
Rating

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
Rating

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
Rating

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
Rating

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
Rating

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.

Son's hand flapping, jumping, head shaking

Comments for Son's hand flapping, jumping, head shaking

Comments for
Son's hand flapping, jumping, head shaking