For whovian and her nephew:
I mentioned in an online forum that my son (known here and in many places as GeekBoy) has Asperger's syndrome, a form of autism. I was asked for more information and ended up writing what was intended to be a short overview of our experience. It got a little long, but I thought it was pretty good, and my cousin, a psychiatric social worker, told me it was terrific. In case anyone outside the Random Chat forum is interested, I thought I'd post it here. Thank you to whovian, aka Trish, because if you hadn't asked, I would never have thought to write it down!
GeekBoy was diagnosed with ADHD and Generalized Anxiety Disorder when he was in third grade (about 8 years old). For the next couple years, Asperger's syndrome was mentioned from time to time, but I honestly didn't think he had that, based on what I knew (at the time) of the characteristics. There are a lot of areas that overlap between Asperger's, anxiety, and ADHD. By the time he was in 7th grade (about 12 years old) I realized he probably did have it, partly because there was better, clearer information available describing the characteristics and symptoms, and partly (I think) because we'd dealt with a lot of his true ADHD behaviors with modifications, training, and medication, and it was easier to see the Asperger stuff. He'd been seeing a psychiatrist for four years for medication, and I talked to the doc about the whole Asperger's thing. He told me that an official diagnosis is based on observation, which can be done through specialized testing, but the testing isn't always conclusive, is rarely covered by insurance, and is very expensive. He said based on what he knew and had observed of GeekBoy's problems, he agreed that he most likely had Asperger's. He wrote a letter for us for the school, where he already had been "identified" with "special needs" (Gifted and ADHD).
The school psychologist and all that bunch told me that for school, the diagnosis isn't that important, since services are based on needs, and the needs don't change because of any particular label, but it's easier to tell someone he has Asperger's than to try to explain what he's like and what he needs, at least as a start.
He has regular classes, plus a resource hour with a teacher who sort of works as his school case worker and his coach. His school is wonderful! It's a huge high school (1600 students), located in an older part of town, so the student population is very diverse--Hispanic, black, white, poor (including kids from the homeless shelter), wealthy, part-time students from the deaf school, etc. There is no "average" student there, so the teachers don't aren't freaked out by a kid who needs some special consideration. When he was in junior high, at a school of almost 100% upper-middle-class suburban kids, there were teachers who just didn't know how to handle the fact that when GeekBoy gets stressed, he needs to pace. Even when this was written into his educational program, it just freaked them out--it was a disruption! Now at his high school, once the teachers know this is his thing, and he won't take off or run away, they let him go out in the hall and pace if he needs to, no big deal.
School is hard for him, though, because he can't keep track of his homework. Sometimes he forgets to do it, sometimes he does it but forgets to turn it in. He tends to wander off someplace in his own head as soon as he gets bored in class, so he misses things. His last IQ test result was 145, but it's a struggle for him to pass his classes. He gets decent to excellent grades on tests, but he doesn't turn in homework and he has trouble getting projects done on time. He can tell you all about the radar systems used by England and Germany during World War II because he saw a program about that on the Discovery Channel a year ago, but he can't remember what he did in English class today.
He is hypervigilant about safety (bike helmets, seatbelts, power tools, ladders, the stove, etc.) to the point of being a pain in the neck, but not like Mr. Monk. If a subject interests him, he will learn everything he possibly can about it (just ask him anything about Stargate, I dare you!), but if he's not interested in something and/or thinks there's no point to it, he can barely tolerate dealing with it (this includes homework assignments). He doesn't like to be touched unexpectedly, but he is a hugger as long as he knows you're coming. He is hopeless at social cues, and we have to remind him to make eye contact when he's talking to people. He can't make small talk to save his life, and in a conversation he either talks your ear off or mumbles monosyllables. He is very sensitive to sounds. He wears earplugs in movie theaters because he can't stand the volume. Textures bother him, especially in food. He doesn't like chunks in anything (except chocolate chips). He absolutely won't eat shrimp, because of the texture (he calls it "crumfy"). He doesn't like to wear clothes at all, but when required (we require), he prefers loose, comfortable clothes with no tags in the shirts. He wears his socks inside out because the seam on the toes makes him crazy (thank heaven for Sean Connery in Finding Forrester).
He will watch an anthill for hours. He's the same way with water. Show him a fountain and he'll go to sleep standing up. Give him a hose and he could play for hours, watching the water, but never remember to actually water the garden. When he wants to think, he walks in circles around the dining room table.
It's obviously a big deal in some ways, but we've tried to keep it in perspective and not have him be self-conscious about it. He has a pretty good sense of humor about it, actually. Once in a while I'll forget myself and say, "Why are you pacing?" He'll say, "Hello? Autistic here!"
GeekBoy will always be "weird" and will always have difficulties with social situations, but he'll be able to function independently in the real world, hold a job, and quite possibly have a family, assuming he finds a patient, organized woman! He has a great sense of humor, and is wicked with puns, so he may not be a social butterfly, but he'll have friends. Knowing he'll be okay as an adult helps us keep the trials and frustrations in perspective.