I haven't talked about this much online, only privately to friends, but my 19-year-old son, Trevor, has Asperger's Syndrome. It's really been a long journey with him -- he was diagnosed late, but he was always "different". When he was little, I thought I was the mother of a budding genius. He knew his alphabet and numbers by the age of two -- in fact, he had an extraordinary fascination with them. He would ignore pretty pictures of bunnies and duckies to point at the page number, or the beginning letter. He used to read license plates. When he was two, he began reading words -- the first being "Sears" and "Raley's". When he got money for his 4th birthday, he chose a toy clock, and within a few months could tell time -- he'd already learned digital time from the microwave clock. He knew the times tables when he was six.
When I took my little genius to pre-school, the teacher suggested he had speech delays, and really pushed for him to be tested. Trevor got speech help from preschool clear until sixth grade, and it was this speech teacher that first suggested that he had some characteristics that were similar to high-functioning Asperger's kids.
Trevor remembers his school years with intense bitterness. Kids played tricks on him because he was naive, or just teased him for being different. Once he said to his speech teacher, while they watched the kids on the playground, "They're playing. I'd like to play, too, but I don't know how." By middle school he routinely spent his recesses just pacing the perimeter of the playground, alone. The few rare friends he had would inevitably dump him after a while -- in one instance, at a parent's insistence.
My thought, for most of those years, was that Trevor just had the social awkwardness you often see in nerdy kids, and that as he matured, things would get better. Then, one day, he became frustrated with something or another, and started screaming and hitting himself in the head, and I could no longer deceive myself: Normal eleven-year-olds don't do that. In fact, with the hindsight gained in my experience as a substitute teacher in Special Ed classes, I can see that this is fairly typical autistic behavior.
So I went searching for information on autism-spectrum disorders -- and in my amateur fashion it seemed like Trevor was hyperlexic. And, actually, I wasn't wrong -- hyperlexia is characerized by the kind of intense interest in letters he had as a young child. It was just one of the cluster of characteristics that make up his disorder.
In his Freshman year of high school, Trevor had a severe bout of depression that required professional intervention. It was around that time, I found that Sacramento State did low-cost testing, and I finally got the official diagnosis of Asperger's Syndrome. At this point, having the label was important so that he could get help when he stated attending community college.
That's where he's at now. College has been better than high school, with it's social pressures -- but it is not problem-free. In spite of his high intelligence, Trevor's grades are pretty average. He has trouble with organization and needs support from me to take care of the paperwork involved in attending college. When confronted with a new situation, he just freezes like a deer in the headlights.
Trevor desperately needs job experience. It's too much to ask to just have him go around town filling out job applications. We've tried nagging him to do that and gotten nowhere. He's afraid of new situations, and nagging just makes him feel bad about himself, which paralyzes him even more.
Another factor is that his odd mannerisms mark him as "different" and most potential employers would just roll their eyes and dismiss him. And his difference is noticeable: One driver's training instructor chewed me out for even thinking about allowing him to drive, comparing him to her retarded daughter. It has been really hard for me to see my early-reading math whiz grow up into a teenager that people mistake as retarded. They say that people with Asperger's Syndrome have about a 50/50 chance at being able to live a normal life -- but the older he gets, the worse the odds seem to be.
He also has big emotional hang-ups about being rejected because of his "difference" -- and job-hunting is 99% rejection. To just push him out into the world is a sure way to send him into depression. Besides that, Trevor tends to make mistakes that mark him as lacking "common sense" and bosses are unlikely to put up with that. So what he really needs is a program that takes account of his disability. He's quite capable of working, but he needs very clear and specific instructions about what he's supposed to do, and what he should not do. He's not a kid that will simply see what needs to be done and jump in there -- a bad thing in the job market where being a "self-starter" is so highly valued.
However, the local job programs for people with disabilities don't deal with Asperger's -- for them, Trevor is not severly impaired enough. We wasted all last summer trying to get him into one -- and after much testing, discussion, expense and paperwork, we were just told what we were told when I first called: "We don't do Asperger's". I think they figured that they could somehow recategorize him into another disorder on the autism spectrum, but no such luck.
So, we're just stuck. I really want to find some alternative to just keeping him in school as long as we can before just giving up to allow him live his life back in his room -- to write his stories, surf on the 'Net, and play video games.