Wednesday, July 2, 2014


Even though ASD wasn't on our radar yet, I heard about the combination of Asperger's and autism into a single diagnosis. It made a lot of sense--the spectrum designation is a great way to describe the various forms and severity of autistic symptoms. But now that terms like autism and ASD are on my mind and in my mouth on a daily basis, I see the limitations of combining so many different forms of autism without subdivision.

I haven't found any kind of official scale for autism severity, but the mental one I've developed so far looks like this:

Sensory processing disorder
On the spectrum
High functioning autism
Non-verbal autistic
Severely Autistic

Not a very good scale, inaccurate and overlapping and whatever, but it's what I have at the moment. And I feel like its important to have words that describe the differences on the spectrum, because it's hard enough to talk about autism issues without having to use confusing or obscure terminology. Or insulting someone; I've read at least one article from a parent who considered the term "autistic" to be offensive.

Is there a scale that the professionals use? Has one not been developed because it's just too difficult, or am I an insensitive twat for thinking that it would be more helpful than hurtful?

I've read several articles like this one about coming to terms with autism in your child. The general theme is that autism is not just a disability, a burden or a curse, but different way of experiencing the world that has its advantages as well as its disadvantages. I love this attitude, and for many families this is a beautiful and accurate way of approaching the challenges their children face. But every time I read such an article, the nagging thought in the back of my mind is "easy for me to say."

When you think of the full range of symptoms and severity that the autism spectrum covers, it seems at best naive and at worst a gross misrepresentation of the trials and obstacles that many families and individuals deal with. Love and acceptance is definitely the right path and it's available to everyone. But it seems a bit rich to say "this is the way your child is meant to be, think of it as a gift, why would you want it to be different?" when some parents aren't sure when or if their child will talk, potty train, or be able to live independently. And I'm sure that's not what any of the authors of these articles are trying to say, but that's the problem with writing and sharing about a condition that varies so widely.

We're still waiting on a diagnosis, but we're fairly hopeful that Merry will fall into the "high functioning" range of the spectrum, what would have been called Asperger's before the two were combined. Or do we still use the Asperger's term anyway because it's so darn useful? Either way, our experience is worlds different from many kids on the spectrum, and it seems like just saying "he's autistic" is going under too big of an umbrella.

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