I’ve had an item on my to do list for a while now about creating an autism primer tab for the blog. Sort of an autism 101 with information about the diagnosis and other technical stuff. The idea came about because, early on after the boys’ diagnosis, I used to get caught up in the technicalities of the jargon. I know that must come as a shock to you all, that my deep seated combination of literary and science nerdery would lead me to get bogged down in the language surrounding categorization. Go figure.
It used to drive me bat-shit crazy to hear something like, “Oh, no, he couldn’t be autistic. His eye contact is too good.” Or “He has Asperger’s? Well, at least he’s not autistic.” Those of you who are long-time readers of this blog may recognize the first one as something BamBam’s dentist actually said to me during his first exam. I can relay with great satisfaction that it was not something the man even thought to say in the second exam. As neither of my children is currently classified as having Asperger’s, the second is something I have overheard, but has not been said directly to me.
It’s the inaccuracy of the statements that gets to me. A diagnosis of Asperger’s means a person is autistic. Because Asperger’s sits firmly on the autism spectrum. That’s pretty much all it means except that he didn’t have a language delay. I suspect what the speaker really meant, though, was that a diagnosis of Asperger’s means he’s swimming in the shallow end of the spectrum, the end closest to his neurotypical peers. But that’s not what it means. Because autism is not a linear spectrum with Asperger’s at the high-functioning end.
The DSM IV (Diagnostic and Statistical Manual of Mental Disorders – don’t even get me started on why autism is diagnosed via a manual for mental disorders) has a list of symptoms divvied up between categories. If you only hit one of the symptoms listed, you fall within PDD-NOS or Pervasive Developmental Delay Not Otherwise Specified. If you hit three of the symptoms with a certain pattern of categories (such as two from category 1 and at least one from category 2) and you didn’t have a speech delay, you have Asperger’s syndrome. If you hit six or more of the symptoms, regardless of speech delay status, you have classic autistic disorder. That’s an oversimplification, of course, but I put it this way to illustrate a point: nowhere in the definition does it specify the severity of the symptoms. So you can meet someone with classic autistic disorder who is able to manage his symptoms, all six or more of them, fairly well. And you can meet someone with PDD-NOS whose one symptom is debilitatingly severe. Which one is better off? I don’t know. And neither does my dentist, so he should shut the hell up.
I’ve been thinking about this so long that it’s almost time for the new guidelines to come out. You see, in May 2013, they’re doing away with the different categories on the spectrum and it will just be the autism spectrum. There is much uproar within the community about it, lots of unhappy people at losing the Asperger’s designation in particular, but I’ve actually been kind of excited about it. It feels freeing to me. That may be because I’m a word/science/categorization wonk or because I’m a parent of children who are classified as having autistic disorder anyway, so I’m not losing their designation. Or it could be that I don’t think the designation of Asperger’s will go away no matter what the DSM V criteria says or what is listed in an individual’s diagnosis. There’s no mention of high-functioning in the DSM IV criteria, but that term is still going strong.
A friend recently introduced me to a wonderful blog through this post. So, from now on, my kids are just spectrumy. Check is in the mail, Lisa and Erica. 🙂
Edited 5/2017 – Lisa and Erica no longer have the blog at http://laughingthroughtears.com/2012/12/06/autism-english-new-definitions-for-2013/ as referenced above.
Thank you! I actually didn’t know all this and I SHOULD. I mean, I knew more than your dentist but still.
Great post, Michelle, with lots of interesting information. Thanks.