Diagnostic Criteria, Stereotypes, and Invisibility

I was recently made aware of "new" diagnostic criteria for adult Asperger's Syndrome, developed by Simon Baron-Cohen and his team. While I was pleased to see that some researchers are actually paying attention to adult issues, including the issue of diagnosis, numerous aspects of the research itself were troublesome to me.

Long-time readers will know that I have some disputes with Baron-Cohen. These are not simply ideological disputes--I believe Baron-Cohen to be a sloppy researcher and frankly am amazed that he is considered to be an "expert" in the field of autism. His eminence in the field does not speak very well of the autism research community's ability to produce quality research free from stereotypes and assumptions. And Baron-Cohen, of course, produces stereotypes on at least two fronts: gender and neurotype.

When reading Baron-Cohen's work, published in 2006, I couldn't help but wonder what is actually new about the criteria he is proposing (hereafter referred to as AAA, Adult Asperger Assessment). Because the criteria itself largely looks like a more specific and stringent version of the DSM IV; there does not seem to be much attention to adult-specific issues, and there certainly isn't much attention to gender-specific issues. Gender issues nevertheless pervade the report in ways which are not adequately addressed.

This study has a male/female ratio of 9:1 (rounded down). This ratio is, quite simply, horse manure, and even many researchers and clinicians are beginning to recognize it as such. The gender ratios for other forms of autism are often closer to 4:1. Why would Asperger's autism have a gender ratio more than twice that of other forms of autism? Baron-Cohen is simply regurgitating old, tired ideas about Asperger's autism, including the outdated 10:1 ratio.

Moreover, Baron-Cohen's definition of Asperger's autism is clearly infused with very stereotypic notions about autism which are both confining and expressed in a way which clearly portrays autistic people as defective normal people. I remain flummoxed why so many autistic people see Baron-Cohen as a pro-neurodiversity figure. At best, he's promoting a very shallow concept of neurodiversity which suggests that we're only valuable in so much as some of us are talented engineers and mathematicians. Our worth is not contingent on our abilities, or our disabilities, but rather our common humanity and rights which we share with all other human beings.

When so many professionals already have silly stereotypes about autistic people, I can only hope that Baron-Cohen's "AAA" criteria do not take hold. While there are certainly issues with the DSM IV, at least it does not suggest that all autistic people lack imagination and read only certain kinds of books.

It is this part of criteria (part D) which is most troubling to me, and also the part where Baron-Cohen's ridiculousness is most apparent. See D1:

Either lack of interest in fiction (written or drama) appropriate to developmental level or interest in fiction is restricted to its possible basis in fact (e.g. science fiction, history, technical aspects of film.)
-doesn't particularly enjoy reading fiction
-would rather go to a museum than the theatre

This particular criteria conveniently embodies everything that's wrong about Baron-Cohen's AAA. Therefore, I will analyze it in detail:

1. The wording seems more appropriate to children than to adults. When we're talking about adults, "developmental level" hardly seems like appropriate terminology. You rarely hear people discuss "developmental level" in regards to neurotypical adults. What is "appropriate development" for adults in terms of reading preferences and is it any different at 65 than 22?

2. What defines "appropriate developmental levels" in terms of reading at any age? Is the adult who loves Harry Potter (i.e. me) not reading according to hir "appropriate level"? Is the advanced reader who reads the classics at age 8 not appropriate? What about autistic people with dyslexia or other learning disabilities?

3. Baron-Cohen tries to be more specific than the DSM IV, but ends up being even more vague in many ways. How is it diagnostic to prefer going to a museum rather than a theater? And heck, how are these abstractions meaningful in any way? There are lots of different kinds of museums, and lots of different films/shows shown at theaters. If I were asked this question in a diagnostic assessment, I would say that I need much more detail in order to answer this question. What kind of show or movie would I be attending? What kind of museum would I be visiting? What would the situation be like sensory-wise at both locations? What about autistic people who like going to watch documentaries (non-fiction) or lectures in theaters? Doesn't that totally challenge Baron-Cohen's simplistic ideas?

I may be an Official Asperger's Autistic, but I definitely would not be interested in going to a crowded and noisy museum regardless of what was being exhibited. I certainly wouldn't want to go in a museum with subject matter that I find uninteresting. I do, however, often enjoy going to movies and musical productions if it's something I want to see. Blanket assumptions such as those made by Baron-Cohen are ultimately rather useless.

4. Why are certain forms of fiction (i.e. science fiction) arbitrarily exempted from the category of "fiction"? Because this makes absolutely no sense at all, when we look at it without preconceived stereotypes. How is a book about aliens and spaceships any more "restricted to its possible basis in fact" than a story about living in modern-day New York City? If anything, the contemporary story is clearly more rooted in fact. In his attempt to perpetuate the stereotype that autistics "lack imagination" and don't read fiction, except for those sci-fi geeks, Baron-Cohen ends up producing a diagnostic criteria which is silly and nonsensical. This, folks, is diagnostic gerrymandering at its finest, and it needs to be vigorously opposed.

While I am not in the habit of endorsing Orson Scott Card's opinions, he nevertheless brings up many great points about fantasy, science fiction, and gender in How to Write Science Fiction & Fantasy. Basically, Card questions the utility of drawing the distinction between fantasy and sci-fi, pointing out that the main difference between them is that one uses machines and the other uses magic. Is there really a difference, say, in a time-travel story that uses a magical spell as opposed to one which uses a time machine? Even if the stories are otherwise comparable? Can we really say that one has more "basis in fact" than the other? To me, and to Card, the answer is, "not really." There are certainly differences in popular associations of sci-fi and fantasy, including a very gendered conception. ("Girls like fantasy, boys like sci-fi.") But, both ultimately, are two facets of the same genre of fantastical adventure. Even bookstores recognize this, typically putting sci-fi and fantasy books in the same section. Many magazines, likewise, are for both science fiction and fantasy.

Baron-Cohen--who I doubt is very familiar with either subgenre--is insistent on separating science fiction out as not-fiction, in the interest of perpetuating stereotypes. This distinction isn't really an intellectually valid one, however, and merely points to Baron-Cohen's own tendency to stereotype autistic people--oftentimes in a way which renders autistic girls and women relatively invisible.

And this doesn't even get to the arbitrary distinctions between literary and genre fictions! (i.e. the idea that Margaret Atwood is a literary author, while Octavia Butler is just a really good sci-fi writer. Again, this doesn't make much sense.)

Baron-Cohen's insistence on separating out "history" from fiction is equally curious to me. I don't know if he means history billed as nonfiction--in which case he is suggesting the old idea that all history is essentially fiction. (As an aspiring historian, I cannot support this assertion.) If he is referring to historical fiction, then this is yet another instance of nonsense and silliness masquerading as legitimate diagnostic criteria. Most books explicitly labeled historical fiction bear very little relation to history. Again, there is a much sounder argument that contemporary novels bear greater relation to reality, however we choose to define it.

If anyone here is displaying "impairments of imagination" here, I think perhaps it is Baron-Cohen. He cannot imagine Asperger's autistic people outside of his male engineer/sci-fi geek paradigm. This does not mean that we lack imagination, that the only fiction we read and watch is of the explicit sci-fi variety, or that only 10% of us are female. There is much evidence which suggests otherwise.

Baron-Cohen has repeatedly shown a willingness to allow his pre-existing assumptions to interfere significantly with his researcher. This does not make for good science or sound neurodiversity advocacy.