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Re: Asperger's disorder

Posted by Sara T on December 26, 2001, at 2:01:33

In reply to Re: Asperger's disorder Augusta, posted by adamie on December 25, 2001, at 20:57:05

Hi all,
I haven't posted here in awhile. But tonight I wandered over here and I saw this thread, and I had to post. My son, aged 10, is AS. He was 6 when we recieved the DX, and since then, I have been frequently on the OASIS message boards and in chats. That site really is a life line for many, many people who are AS, or are parents of AS kids, etc. So I, too, highly recommend it for information as well as support. I also recommend an edited book that came out last year titled ASPERGER SYNDROME, edited by Ami Klin, Fred Volkmar and Sara S. Sparrow. These are the top researchers in this field, at Yale, and the book contains the most recent research available on this syndrome. It's a very academic sort of book, but even a layman can get alot of information.

My son was always eccentric, and did OK through pre-K, but when he got to Kindergarten, he couldn't cope and would come home saying he wanted to hide himself underground or burn himself up. He withdrew because he couldn't take the sensory overload and the demands that sitting still and paying attention placed on him. And he was more than academically ready, in fact, rather precocious. We were fortunate that the school's observation team saw ticks and called attention to his toe walking and directed us to a neurologist. We got the dx from him after thorough testing from a psychologist also.
He has benefitted greatly from SSRIs because they help him control the OCD-like symptoms of this syndrome. He has been on Zoloft for 2 years now. He also takes Concerta (an extended release methylphenadate)and has taken Adderall for the attentional issues. In addition, we have done behavioral therapy, occupational therapy, physical therapy and social skills training.

At age 10, he is doing well. He likes school, he works 2 grades above his level (4th grade), has some friends, is appreciated for his knowledge and sense of humor. He is a great kid. Even so, the AS is still very much a part of the picture. I doubt he'd be able to function as well without the meds. Even though he has "friends", his interactions are often one sided, he likes to lecture (he IS the Little Professor) and reciprical friendships are still something I don't see him participating in. Usually, he will develop a buddy who will call him but it will not occur to him that he could call them. He gets lonely but it never seems to occur to him to call one of his buddies. We, the parents, usually set up invitations. In spite of that, the kids in his class seem to really like him. His teacher in 2nd grade told the class about his AS and instead of rejecting him they all seem to protect him. Of course, this is elementary school, I don't know how things will be once they hit middle school.

My son is obsessive. A hallmark trait of AS. When he develops a special interest, it is all consuming, 24/7, and every conversation, no matter how it starts, will end up being about his special interest.

When things become overwhelming, sensory overload will result and he will start to stim (repetitve movements). Stims are conforting and help one organize oneself internally. Autistic spectrum individuals often are hypersensitive to sensory stimulation. My son cannot be in stores very long, or around smells he doesn't like, or loud noises. Proximity to others is not comfortable to him, and he doesn't like to be touched although he likes massages (his muscles are often cramped because of anxiety or toewalking).

Tourette's Syndrome does occur at a higher incidence in Autistic populations. But ticks and nervous twitches and facial grimmaces are also manifestations of anxiety. The higher the anxiety level, the more my son will toewalk, grimmace and stim (flapping or making finger movements), as well as try to hide under something or wrap himself up.

As well adjusted as my son is, I still worry for his future. How well will he cope with whatever life hands him? I went to a conference last year on High Functioning Autism and Asperger's and probably 75 to 80% of the parents I met, who's kids were in middle and high school, home schooled their kids because the school situation had become intolerable.

Many individuals with AS do need to go on disability because they cannot handle the demands of the workplace. It is a very real disability, and many of those who are employed are underemployed because they can't cope with job stresses.

My son has a good chance to grow up and be successful at what he wants (to be a scientist). But it will take alot of hard work for him and it is sometimes very painful to watch. I am thankful we got the right DX and the meds are available to help him stay stable and grounded enough to do what he needs to. I wouldn't change him for the world, but I wish I could make the AS go away sometimes, so his life could be easier to live. AS is a pervasive neurological developmental disorder, it doesn't go away, but we can learn to cope. And I've seen tremendous change.

Thanks, and sorry this is so long.

Sara T




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