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Moebius and Autism
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     When my son was a toddler, he loved to lay flat on his back and shake his hands.  He preferred to be alone in his room listening to the same CD’s over and over instead of playing with other kids.  He hated any sort of change in his routine.  He didn’t play ‘make believe’ like many other kids his age.  But - he was highly verbal, had an incredible memory for facts, preferred talking to adults and would amaze them with his verbal skills.  I wondered many times if this was ‘something’ or I was just being a neurotic mom.

     As he got older and problems of not being able to concentrate in school became an issue; as he just didn’t get idioms - would in fact take them very literally; as he had such a low tolerance for frustration, I decided to seek a professional opinion.  As I started reading everything I could get my hands on, I began to read about ‘Asperger’s Syndrome,’ and the characteristics were all too familiar to me.  Then we met with Dr. Wendy Roberts from the Hospital for Sick Children in Toronto at the last conference and she confirmed what I had come to believe - that Sean indeed had Asperger’s in addition to Moebius Syndrome.  Suddenly I understood that there were many other children who had extremely high verbal and math IQ’s, but fell extremely short in the pragmatics of speech.  These kids also had a hard time seeing ‘the big picture’ at times and their performance IQ’s did not match the verbal/math IQ’s.  Finally I understood his fixation with specific subjects - first music, then the presidents, now sports - especially wrestling!

   In her talk at the conference in Toronto, Dr. Roberts explained that she was working on a study to determine if there was a connection between Moebius and Aspergers and other forms of high functioning Autism.  She explained that both Moebius and Autism occur at approximately the same time in development and both happen in the brain stem.  Suddenly it made sense - the many kids I’d seen at the conferences whose behaviors were much like Sean’s.

    I’m not saying ALL people with Moebius have some form of autism any more than ALL people with Moebius have limb differences, or respiratory problems, or eye problems, or a myriad of other issues which affect many with Moebius.  But - if you or your child exhibit these symptoms there is help.  Dr. Tony Atwood has written a very informative book, Asperger’s Syndrome.  There are three newsletters I now receive which deal with this -1) “PDD Network,” by Stacy Hultgren, BHULT40@aol.com; the newsletter costs $12 per year and is worth every penny! 2)“The MAAP,” (More Advanced Autistic Persons) by Susan Moreno, chart@netnitco.net, and 3) “The Source” published by ASPEN of America, Inc. at www.asperger.org

     Dr. Roberts will be a speaker at our conference in July.  I urge anyone who is interested in this topic to attend.  As far as Sean - he’s now 9 and in the 3rd grade.  With intervention from his OT, speech therapist and a structured teacher, he’s doing  well in school now.  He has friends, plays basketball and can tell you all of the stats for all of the NFL, NBA, and WWF.  His goal is to be a sports commentator.  I have no doubt he will do just that!  He’s amazing!

-Vicki McCarrell,
vmccarrell@mid-mo.net
 
 

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