OTR/L

by Michael
(New York, NY)

After 20 years of practice, I feel it is NOT a real diagnosis. I feel this author has nailed this so-called diagnosis right on the head!


http://www.quackwatch.org/01QuackeryRelatedTopics/sid.html

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Nov 02, 2009
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um duh
by: MM

Yes children have sensory issues with autism, etc. That's why it's called sensory processing disorder. This was a waste of a post IMO.

Nov 01, 2009
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Hear This!
by: Anonymous

How can you possibly not believe in SPD? Have you looked around lately? It's everywhere! Watch children at the beach, a fair, a birthday party. Ever seen a precious child cover their ears at the most simple sound, or cry because a sock hurts their foot? What about repetitive self stimulation? I have. I have one child age 6 on the autism spectrum and another with a lingering question of SPD. Come live in my world. Better yet live in their's the way they experience it! It is so very, very sad for all those you don't understand and your misconceptions of them. People like you are what makes a parent like me worry about her children's futures.

Oct 10, 2008
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casting stone
by: LSCW

Be careful of casting stones. We humans are very complex beings and man made labels do not contain us. Bottom line, the DSM-IV is a man made book used to catalog "symptoms" so therapists can get paid from insurance companies. I am an LCSW, in practice for over 10 years, if these children are getting relief from these treatments and the treatments are doing no harm them go for it! What ever works that does no harm. Doctors aren't even sure WHY aspirin works for headaches but millions of us take it every day. Many studies show placebos work as well or better them traditional medication but insurances and pharmaceutical reps keep pushing those pills.... What works for one person doesn't always work for everyone. "Science" isn't all its cracked up to be. As a parent, you need to find what works for you and your child (family).

Oct 08, 2008
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your way off
by: Anonymous

ITS REAL. LEARN IT. I READ THAT ARTICLE AND ITS WAY OFF. READ THE RESEARCH AND YOU'LL SEE WHAT I MEAN. HE IS CITING ONLY STUFF HE AGREES WITH. I CANT BELIEVE HOW SILLY YOU ARE. READ DR. LUCY JANE MILLER OTR/L PHD. RESEARCH then you'll believe.

Aug 03, 2008
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SPD
by: Joy

Micheal,
My son is 5 and has SPD along with Cerebral Palsy,ADHD, Expressive Language disorder and the list goes on.
I do know for my son SPD seems to be at times more crippling for him then the C.P. he has.I have no Idea where it comes from ,I have no Idea what it is and i have no idea what my child's future will be like living with it . But the one thing I do know is he does have it ,He is affected daily with it and it does hold him back from having a normal childhood.It is very real and it is very devestating to the entire family not to mention my son .

Aug 02, 2008
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And You Are?
by: Claudia

On what are you basing your comments? One web site? What is your background?

My son has SPD with NO OTHER disorders. He's almost 3 and reads fluently. He's a very gifted child, but with SPD.

I'd love for my son to have an MRI or other tests to prove that his brain reacts differently than other children's. I hope more research is done do disprove nay-sayers such as yourself.


May 22, 2008
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Stupid Stars
by: Joy

Your stupid one star rating doesn't change the fact that I have a child that lives a life very different than normal children of his age and it's due to his sensory issues.

May 22, 2008
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SPD is REAL
by: Anonymous

Just some food for thought. I have a 15yo daughter diagnosed with SPD at age 6. She has no other neurological diagnosis. No autism, no ADD. Straight A student who wants to go into research for a cure for autism. She can tell the difference in taste of milk from one brand to another. When she was little and I tried to fake her out and put another brand of apple juice in her old favorite brand bottle because the store was out - she told me the juice was "rotten" and refused to drink it.

When she was an infant, she would cry hysterically when I took her down the grocery aisle with the soap powders and cried when the Grandma who wore perfume held her.

Its REAL - very real.

As she got older she has learned how to deal with it much better. The therapy was very helpful - that tells you something,too. Because she is very bright, she has been very helpful to the doctor she sees to help explain to him how other children might feel who don't have the vocab to tell him.

Science will someday PROVE you wrong.

Mar 13, 2008
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I'm sorry, It's real!!!
by: Anonymous

I still am not understanding why some doctors still don't want to recognize SPD as a real diagnosis. I am watching my son every day inhibit most of these so-called "symptoms" and it pains me to see that he has such issues. I don't think anyone understands until they can spend more one on one time with one of these children. To me, it is a real disorder and explains why my son acts the way he does at times and why he can't do certain things that most of his peers at his age are doing. Maybe these doctors should open their minds a little and put themselves in these children's little worlds that are so scary to them.

Mar 11, 2008
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OTR/L ...??????
by: Joy

I feel you don't know what your talking about! I feel that you have limited yourself to one stupid article. If you were to do real research you might see it differently. As a Mother of a Child with SPD you're not pulling the wool over my eyes with your shallow attempt to discredit this very REAL disorder. If you think you're so smart why don't you offer up some time to really see these kids and how they have to live their lives because of this !!!! Ever see a 5 year old unable to play on a playground????? I have... everyday he watches as others play, unable to play himself because of his very real Sensory Processing Disorder!!!! And, how about responding to all the comments here??

Mar 09, 2008
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For Dan
by: Craig

Hi Dan,

You are most welcome, but I'm the one who needs to shout out an enormous Thank You to you. Your courage in sharing your own personal experience is touching, heartwarming and uplifting as well. I'm sorry that you've had to go through so much trauma in the process of overcoming your physiological deficits. But, I am so inspired by your "exploding" in such a positive, supportive and helpful manner.

I sincerely hope that you are on a path that allows you to recognize how truly remarkable you are. You just gave this parent of an SPD child a healthy dose of hope for my daughter's future - simply by sharing your positive example. For that, you have my tremendous gratitude.

Rock on Dan! Rock on!

Many Blessings,

Craig

P.S. I'll check out the SPD Adult S.H.A.R.E. group - hope to catch up with you there.

Mar 09, 2008
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Second, for Craig
by: Dan (from SPD Adult S.H.A.R.E., by the way)

Hi Craig. Personally, I thank you for calling me a remarkable person. I would hear that a lot from whoever noticed any of my many talents. I liked hearing it, but I never let it sink in. Why? Because part of me didn't really want to feel good about myself, at all. All of my physiological short-comings had taken their toll on my emotional security, and I hated hearing people compliment me. I realized that if I ever started feeling good about myself, or believing I had fought through a lot to get where I was, I would fall apart. So I started shrugging off compliments and rationalizing away all of my abilities, as I believe most invalidated SPD sufferers do.

I hid most of my pain from everyone, including my family. Not because they were bad people, but because I didn't feel as though I could trust even them (even though they were typically supportive). Before I researched SPD, I had come to the decision that I had made a terrible mistake. The weight of everything I had been carrying for years made me feel as though I was going to burst.

I decided that I had to burst, but I had to do it in the best way possible. One way is to blow up and hurt everyone. Another is to implode and hurt myself. The third way, the route I have chosen, is to gradually remove all of my highly constructed societal defense mechanisms and tell people pretty much everything, which can definitely be scary, but I just might help someone. I've ALWAYS tried to help people, even if I thought I couldn't.

Mar 09, 2008
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First, for Michael
by: Dan

First, for Michael: I believe I may have seemed a little harsh in my review. I didn't really intend to call you narrow-minded (remember, I don't even know you). I don't like feeling as though I've made an enemy of someone. After all, if my own body can be my biggest enemy at times, why would I want to make any new enemies? I merely wished to state that your view on this topic was narrow.

I also didn't make a full argument, as this is impossible in so little room on this page; nor will I want to make a full argument, as very few are going to see it here.

One other problem I had with that article is that it stated a lack of good research as the real reason for the skepticism. That is a lousy argument. It's true, there has not been enough research on this topic to "prove" (in the minds of the health community) this disorder's existence. However, how can this disorder get effectively researched, if the powers that be have decided not to list it as a real disorder, therefore depriving it of badly needed recognition by those who fund these national research programs?

Let me ask you this (partially because I actually don't know, partially because I believe I do), how long was it before ADD or OCD were effectively "prove" enough to be included in these lists and granted immediate funding and support by the government. Let me guess: not very long. Why? Because people with these disorders don't really stop acting out or acting bizarre, no matter what activities you try. Why? Because these are mental disorders, not neurological disorders, and inconsistency, I've read, is a trademark of neurological disorders.

Doctors have found that drugs could be administered to those with these other disorders that would fight off the symptoms. Drugs? Prescriptions? It's easy for insurance companies to support these, as the treatments sound easy. But what is to happen of the child or adult that suffers through every moment of every day, continually being told that their problem is controllable through mental decision making, because they didn't test positive for a mental disorder (because they truly don't have one)?

They continue to suffer and start having undesired suicidal thoughts and may quickly turn to addictions and crime. Do you really want to deprive that person of the little bit of peace of mind and support they might get from the few people who truly do understand them? I hope not. Treating this disorder can reduce crime rates, reduce prison and rehab population, boost employment, and foster great future economic growth. I wanted to write so much more here, but there just isn't enough space.

You're probably a great guy Michael, but I can't agree with your statement.

Mar 09, 2008
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Message for Dan
by: Craig

Hi Dan,

I did not get a chance to read your response to Michael prior to posting my own. When I did read your's, I was pleased to see that we had a psychic connection on this. I, too, had read "Dr.Quack's" quackery diatribe on SPD not being real previously and had the same visceral reaction to it. But, I don't mind Michael's linking to it as it gives us the opportunity to respond to the narrow mindedness that we have all encountered regarding SPD. Funny, that we should have to lobby professionals to keep an open mind about SPD in an ever changing world.

What I found even more amazing was that you and I both made reference to "The world isn't flat" argument. I chuckled at that because it is a testimony to what it feels like in trying desperately to get people to open their eyes about SPD.

You are a remarkable person. I am so pleased that you have voiced how effective treatment has helped you with SPD. You are the most effective advocate for SPD because you know exactly what it is all about. And, you have my respect and admiration for sharing your experience and your tremendous advocacy for the cause.

One other point about Dr. Heilbroner's article. He mentions that since there are "few (if any) adult patients have sensory integration disorder, it is reasonable to question whether costly interventions are really necessary for what is a most likely a self-limiting problem of neurodevelopmental immaturity and anxiety." Wow, is he off the mark on that one! His argument appears to be that we should have children with SPD just wait it out and let nature take it's course. He doesn't bother to think about the serious psychological damage that results when children spend years having to "adapt on their own" to a disorder that is effectively treated with OT, Listening Therapy and other modalities. Yes, children with SPD will learn to adapt on their own, but at what cost to them? And, what's the end result of our negligence - a child who becomes an adult who has adapted to social isolation by shutting off the outside world? Hmmmm, Dr. Heilbroner and Michael? I guess we just let anti-depressant and anti-anxiety medications handle that one later on...

Back to Michael. As an OTR/L, you have or will come across these children. Please help them all that you can and do it in the spirit of your chosen profession.

Craig

Mar 09, 2008
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More research on SPD is Needed
by: Anonymous

Michael,

Of course it's not yet a formal diagnosis (in the context of what the medical/psychological community demands). But, even Peter L. Heilbroner, MD, PhD, admits that more careful research is needed. And, his comments about this being anxiety and behavioral related actually supports the contention that it is neuro-developmental in nature.

Research takes time and money. And, funding for research is easier to get once the disorder is properly defined and recognized. Work is going on in that area - check out Colorado State University's research for more information. There is some interesting data being gathered on Sensory Gating differences between typical children and children who display Sensory Processing Disorder symptoms.

"Sensory gating is an is an adaptive mechanism to prevent over stimulation. It is the process by which the brain adjusts its response to stimuli. It is a largely automatic process. When one stimulus is presented, there is a response. But when it is followed by a second stimulus soon after, the response to the second stimulus is blunted. Preliminary data from studies indicates that children with sensory processing disorders display deficiencies in their ability to gate repetitive sensory information."

http://brainwaves.colostate.edu/Poster%20P50%20at%20SPR%202004%20v4.pdf

http://www.nytimes.com/2007/06/05/health/psychology/05sens.html?pagewanted=print

So, if every sensation is coming at you 'fast and furious" most, if not all of the time, wouldn't you get a little anxious as well? And, wouldn't your behavior in response to that, be a little bit off?

Remember, it took a long time to get people to believe that the world was round. The bottom line is that OT does work for these children - I've seen it happen right before my eyes.

Keep fighting for more research and keep an open mind please.

Mar 09, 2008
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Still living in the Dark Ages
by: Dan

You know, it's funny. I have seen and read this article before, and I honestly never thought it would end up on this site. Why did I read this article? I love proving the other side wrong.

First of all, this doctor IS right about one thing, that a diagnosis of SPD should be seen as a possible sign that there is something else wrong with a patient, but most every other facet of this article can be argued successfully.

How can it be argued successfully, if our current technologies have a hard time finding a problem? Easy: Technology in the health field (especially the mental/neurological health field) is constantly evolving. In other words, they have difficulty finding the problem because current technology isn't precise or effective enough to easily interpret or discover it.

To view this problem as non-existent because current computerized technology can't find it is to say that our current technology is actually infallible (Ha! Think back twenty years, and then try to predict twenty years from now, how much technology should probably improve).

To say that current man-made technology is infallible and cannot find a problem (therefore there is no problem?) is a very narrow-minded view. I urge you to 'step outside the box' of today's current scientific views, and take a more open minded approach.

Choosing to stay narrow-minded is one thing, but to post it on a support site that has brought hope into the lives of so many desperate parents and children that have been refused help by those 'in the field' who can't 'think outside the box' to help them, is another.

I'll allow you to keep your narrow mindedness, but just know this: like those who used to burn philosophers at the stake for claiming that the world was round, your days may soon be numbered.

The therapy in question IS helpful, and even if SPD is later found to never be an existing solo diagnosis (though I believe it can be), SO WHAT?

This is a new science, and we need to be able to except new science, even if it seems bizarre to us.

You see, I HAVE SPD, and treatment HAS helped me. It was definitely worth the time, and nothing any conventional doctor could give me would have helped me this much.

This is an unconventional problem, and conventional methods do NOT work.

Thank You for posting.

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