When the mental health folks decided I’m on the autistic spectrum, they didn’t give me any specific label, such as Asperger’s, Kanner’s Autism or PDD-NOS. While there’s a chance that I will someday get labeled something specifically, and while many people ask about one’s specific diagnosis, I am pretty glad I didn’t receive a specific label.
I wanted to write about the stupidity in distinguishing between different Autistic Spectrum Disorders before, but now I feel inspired by one of Amanda Baggs’ posts, discussing the PDD-NOS label as well as a recent discussion on terminology on the Dutch AutSider autism forum.
The diagnostic criteria for Kanner’s Autism, Asperger’s Syndrome and PDD-NOS do not differ as dramatically as one might think. Asperger’s and Kanner’s Autism, for example, only differ in that Asperger’s people invariably have an IQ above 70 and didn’t have early language delays, while Kanner’s people did. For people with an IQ above 70 but below 85, this may even mean a diagnosis of mild intellectual impairment along with Asperger’s Syndrome, cause in the Netherlands, borderline intellectual functioning is, depending on other variables, often also considered a mild intellectual impairment. This is, by the way, not just theoretical, as I used to know someone diagnosed with Asperger’s who is also considered mildly intellectually impaired.
Yet people assume Asperger’s is intrinsically mild. Lenny Schafer et al. used to use a “diagnosis” of Asperger’s Syndrome to discredit Michelle Dawson (who is, by the way, diagnosed with Kanner’s Autism). For her, and others like her, this distinction is hihgly hurtful, and I would be on their side if I were labeled Asperger’s – particularly, the assumption that people with this label are highly verbal, would hurt me in some situations. Others, however, delight in the distinction, cause it allows them to distance themselves from the Rainman stereotype in Kanner’s Autism. There are once again problems with this: firstly, most Kanner’s autistics are not like Rainman, either, and the distinction doesn’t help to dispel the myth, and secondly, some Asperger’s people do have severe difficulties. What if Asperger’s, which is now still relatively unknown, becomes widely known as “Geek Syndrome”?
Another problem with assumptions based on a specific diagnosis – while the diagnosstic criteria for each of the three ASDs are only slightly different -, is the old severity indication. It is not even diagnostically incorrect to assume that Asperger’s, on average, is less severe than Kanner’s Autism. But how severe is “less severe”? And where do we place PDD-NOS, which is diagnosed quite frequently in the Netherlands and which is often incorrectly assumed to be a very specific diagnosis (probably cause no-one knows what NOS stands for)? There are, generally speaking, two different opinions on this: some people believe that PDD-NOS is less severe than Kanner’s but more severe than Asperger’s, while others place PDD-NOS on the mild end of the autism continuum. Both are possible (certainly with the DSM-IV from 1994), but it makes quite a bit of difference which of these you care to believe: imagine your child were diagnosed with PDD-NOS based on the first definition (eg. she meets criteria for Asperger’s but also has a language delay), but her teachers believe in the second stereotype so assume she’s only very mildly autistic. I bet it would be difficult to get services written into her IEP.
A long while ago, long before anyone had ever voiced a concern about believing I’m on the spectrum, the old student in work placement here at training home, made a comment about what children with PDD-NOS are like. They were supposed, when they lost something tiny, to be looking for it very organizedly. She contrasted these children with those with ADHD, who would impulsively look everywhere, and consequently got to wonder what children who have both ADHD and PDD-NOS would do. Well, a fellow client here has, if I’m correct, a diagnosis of PDD-NOS, but I don’t think he’s ever going to do as PDD-NOS people are presumed to do. I think it’s about time people learn what NOS means!
For once, in light of this discussion, I would like to link to Bernard Rimland. I’m not a big fan of him, but his article on PDD makes quite a bit of sense. This is why I prefer the term Autistic Spectrum Disorder, and would even if I had a specific label: I do not meet the Asperger’s or Kanner’s stereotypes and I’m sick of assumptions about the specifities of something Not Otherwise Specified. We’re all autistic regardless of diagnosis or “functioning level” (another very arbitrary term) and the junk of stereotypes on differences between only arbitrarily distinguished disabilities, makes me feel sick.
