7:09am February 7, 2012

“I don’t believe you can meaningfully separate autistic people into “high-” and “low-functioning” in the first place, but if you can it’s not by comparing their political opinions.”

Cal Montgomery (via youneedacat)

I find this quote interesting and I think it’s probably correct. Asperger’s has always been the diagnosis’s for the higher-functioning. But when you can separate groups out, is it relevant or even helpful to keep them grouped together?

When researchers have tried before in the past to find any meaningful difference between Asperger’s and lower-functioning Autism they have been unable. That has been part of the argument as to why the Asperger’s diagnosis is meaningless and needs to go.

Conversely meaningful separations that can be made (although I’m not talking in terms of IQ) and I’m specificaly talking about the ICD-10 diagnosis “Atypical Autism”.

Researchers have found that Atypical Autism is a meaningful separate entity to classical Autism. It’s meant to be used to diagnose people that show no signs of Autism until when they are meant to speak (around the age of 3). Such individuals have severe receptive language disorders.

I’ve have always wondered how relevant it is to lump such people under the Autism label. How distinct a group does one need to be to be considered separate? How different do different groups need to feel before they are separated? Perhaps I’m being pessimistic, but I have often wondered whether things are grouped together for funding purposes.

That’s interesting because I’ve heard the exact opposite. That on cognitive tests, autistic people and Asperger people score quite differently in their areas of strength.  (And that among autistic people there’s no meaningful distinctions in the same tests even between what are normally considered different functioning levels.)

And also that when they test the diagnostic reliability of autism, Asperger’s, and PDDNOS, that the autism/AS line is quite clear. But that PDDNOS has the least reliability among diagnoses on the autism spectrum. PDDNOS is what atypical autism is called under the DSM-IV. 

You’re actually only listing one of the definitions of atypical autism, and not all of them. Like PDDNOS, atypical autism is not a “thing”, but a collection of things that aren’t really closely related to each other at all, but that represent very different things. Here is the exact definition of atypical autism:

“A pervasive developmental disorder that differs from autism in terms either of age of onset or of failure to fulfil all three sets of diagnostic criteria. Thus, abnormal and/or impaired development becomes manifest for the first time only after age 3 years; and/or there are insufficient demonstrable abnormalities in one or two of the three areas of psychopathology required for the diagnosis of autism (namely, reciprocal social interactions, communication, and restrictive, stereotyped, repetitive behaviour) in spite of characteristic abnormalities in the other area(s). Atypical autism arises most often in profoundly retarded individuals whose very low level of functioning provides little scope for exhibition of the specific deviant behaviours required for the diagnosis of autism; it also occurs in individuals with a severe specific developmental disorder of receptive language. Atypical autism thus constitutes a meaningfully separate condition from autism.”

So actually the most common use of atypical autism is not the one you mentioned, but rather when people have another condition that makes it impossible to display enough autistic traits for a diagnosis.  I have personally known several people in that position, usually diagnosed also with CP or an intellectual disability.  It’s also used for people whose traits aren’t considered extreme enough for an autism or AS diagnosis, and also in the circumstances you mentioned, and lots of other circumstances. 

I agree that some version of PDDNOS or atypical autism as a diagnostic category is vital though. Less because doctors can agree when to diagnose it (they can’t), or because it’s a specific thing that’s meaningfully separate from autism (it isn’t always either of those things), and more because of the new diagnostic criteria.  They completely leave in the dust most people with a current diagnosis of PDDNOS/atypical autism, in the zillion different forms it takes. And they will be moving some people (including some people with severe problems that require autism services) off the spectrum entirely, who would still more than qualify for a PDDNOS/atypical autism diagnosis.

The loss of PDDNOS/atypical autism is thus way more disturbing to me than the loss of Asperger’s:  It eliminates people who clearly have some form of autism but don’t fit exact criteria. NOS/atypical diagnoses are very important in every category for that exact reason:  conditions never have clear boundaries and there’s always people who have something but don’t quite meet official criteria. 

Oh and I don’t necessarily believe in the stuff I said above about AS. It’s just what I’ve heard from researchers. I think some of their reasoning is pretty circular. (Define a group of autistic people by the presence of one skill that others don’t have. Test them. They have that skill. Therefore the distinction is valid.)

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