I find it somehow comforting to read articles about Asperger’s Syndrome -- to read about the symptoms and characteristics and be able to say “Aha! There’s Trevor!”. I guess it makes me feel more able to deal with his differences to know that they are part of his disorder and not some kind of unique weirdness that only we have to live with.
A story hit the news a while back that they (whoever “they” are) are considering getting rid of the Asperger’s label altogether and simply lumping them in with high-functioning autism. According to Dr.Tony Attwood, the only real differences are in early development, but as they grow older, there really isn’t much difference between them.
Some quotes that struck me:
They also noted that the profile of social skills in children with autism includes self-isolation or rigid social approaches, while in Asperger's syndrome there can be a motivation to socialise but this is achieved in a highly eccentric, one-sided, verbose and insensitive manner.
In other words, autistic children really don’t care if they socialize, whereas Asperger’s kids do -- they just don’t know how. Trevor’s approaches tend to be awkward -- when he was younger he tended to open with inappropriate questions like “How old are you?” to an adult. He’ll talk your ear off with details about a story he’s writing -- he’ll do that even to strangers, and he really doesn’t appear to care whether or not they are interested. He can be insensitive -- then when he makes someone angry, he gets very frustrated and down on himself, even self-punishing.
There is general agreement that children with Asperger's syndrome may not show any conspicuous cognitive delay in early childhood. Indeed, some can be quite precocious or talented in terms of learning to read, numerical abilities and in some aspects of their constructive play and memory. Children with autism can be recognised as having developmental delay in their cognitive abilities from infancy and diagnosed as young as 18 months of age with a mean age of diagnosis of five years. Children with Asperger's syndrome are often not diagnosed until after they start school with a mean age of diagnosis of eleven years (Howlin and Asgharian 1999). However, the signs of Asperger's syndrome in very young children may be more subtle and easily camouflaged at home and school
With autistic children, it’s usually quite clear early on that something is wrong. Every autistic child I’ve seen in my work as a substitute teacher starts Kindergarten in a Special Education classroom. Even the highest-functioning one I know of started there, even though by fourth grade he was in a general ed classroom with an aide who helped him, and I’ve heard that in middle school, he didn’t even need the aide any more. However, I’ve never seen a child with an Asperger’s diagnosis in Special Ed or with a one-on-one aide; they are in regular classrooms and get the support they need from pull-out programs. (Speech, for example.) As far as the disorder being “camouflaged”, you can check out my own
story on just how long it took for us to understand that something was wrong with Trevor. The school never diagnosed it, either. As I've said before, Trevor's precocious abilities in reading and math misled us into thinking we were raising a budding genius, not a kid with a learning disorder.
The DSM criteria refer to children with Asperger's syndrome as having, in comparison to children with autism, no clinically significant delay in age-appropriate self-help skills and adaptive behaviour. Clinical experience indicates that parents, especially mothers of children and adolescents with Asperger's syndrome, often have to provide verbal reminders and advice regarding self-help and daily living skills. This can range from problems with dexterity affecting activities such as learning to tie shoelaces to reminders regarding personal hygiene, dress sense and time management.
Trevor was ten before he could tie his own shoes, and we’re still working on “self-help and daily living skills”, even though he's a young adult. He's made a lot of progress with hygiene, taking care of himself without reminders now. But it was an issue throughout adolescence.
The final, and to me, the most important difference that Attwood mentions is that a diagnosis of autism gets help; a diagnosis of Asperger’s does not. The reason that Far Northern put us through all their testing, even though they knew they couldn’t help a kid with Asperger’s, is that they were hoping they could re-categorize him. But, to no avail; he has Asperger’s Syndrome, and the state won’t pay. Virtually every agency I’ve contacted asks me if we have gone to Far Northern, which appears to be the funding conduit for most forms of assistance for learning-disabled adults. Not qualifying there closed a lot of doors for us.
Anyway, I have mixed feelings about getting rid of the Asperger’s diagnosis. I know I would have been a lot more resistant to a diagnosis of autism -- and Trevor is definitely different than the autistics I have known, both in his history, his abilities, and his problems. On the other hand, if Asperger’s were not considered a separate disorder, he would qualify for a whole smorgasbord of programs -- SSI, independent living assistance, job training, etc. The label isn't nearly as important to me as getting the help he needs to become a functional, independent adult.