Monday, February 25, 2008

Where do we fit in?

You hear so much in the news nowadays about autism. Celebrities are speaking out, charities being formed and raising money, books being written.........the awareness of "autism" is much more prevalent than even just a few years ago. But along with that, comes a much higher incidence rate of autism itself, and of the so-called "autism spectrum disorders" (ASD). Recently, the "1 in 150" statistic has been highly publicized, and it occurs even MORE frequently in boys, for some reason.

But even with the deluge of publicity on the topic, it's taken me quite a while to accept the fact that my son is on the spectrum. But he is. Or is he? Just about every day, I struggle with this. First, his tentative diagnosis was PDD-NOS, which is like a pile of leftovers for the kids who don't officially meet the criteria for "classic autism" or other recognized ASD. As I understood it, PDD-NOS is for those kids who have some developmental issues and autistic symptoms or "tendencies", and there's no real label to put on them, so they get "pervasive developmental disorder-not otherwise specified". How's that for a mouthful?

But, Andrew was a preemie too, a 29-weeker. And most preemies have developmental delays, specifically in the areas of motor skills and/or speech. And true to form, Andrew was delayed, both in learning to walk and in the development of his language. He said a word or two, then stopped, and said no more for a while. He didn't acquire baby's favorite word, "no", until he was 2 1/2.

So when we started the diagnosis process, evaluators said "he sure looks a lot like Asperger's Syndrome" but the strict definition of Asperger's says that a child must NOT have had a speech delay. And as time has progressed, I've thought back to those comments and come to the almost-conclusion that Asperger's is a more accurate description of Andrew. But in some ways, even Asperger's doesn't quite fit.

Andrew is smart, very smart. Academically, he does very well at school and reads above grade level. He's made such tremendous progress over the last 2-3 years, and the progress even extends into the social realm, where ASD kids typically have the most trouble. He can play with other kids, speaks to them, looks at them, enjoys their company. He's even started to say some typical-6-year-old things, like "this is boring" or "I'm tired of this", and occasionally has a bit of an "attitude", all of which are typical of non-ASD kids his age, right?

I have wonderful cyber-friends in the ASD world, and I owe so much to those ladies for their support and encouragement. But since every child with ASD is so different, I still sometimes feel like we don't really belong anywhere. I want and need to have a community of people to belong to, and to understand what we deal with and what my parenting situation is like.......I'm just not sure how to find it. I never want to make any other parent feel bad, if her child might be struggling more than mine or has more disabilities, etc. But it's just hard, feeling like we are neither off nor on the spectrum.............and since you can't pick and choose the characteristics that apply, we're left floating out there, knowing that Andrew still has difficulties to work on, but not always knowing how to go about it. There's definitely no road map.

No comments: