Tuesday, March 3, 2009

Autism, Neurodiversity and Self-Esteem

Joseph of Natural Variation has an intriguing post up about differences between autistics who think of their autism in neutral, mixed or positive terms* --- and who therefore tend to think of it as a difference to be accommodated rather than a disease to be overcome or cured --- versus those who see their autism only in terms of difficulties, and wish they were not autistic.

Joseph's post was a response to this post by Jonathan Mitchell of Autism's Gadfly, which cited this article in the journal Dyslexia (Joseph provided a link to this annotated Powerpoint presentation on the same research) on the BRAIN.HE project, which interviewed 27 neurodiverse college students about their attitudes and experiences.

From the abstract:

Participants generally held one of two views about their identity as "neurodiverse": a "difference" view --- where neurodiversity was seen as a difference incorporating a set of strengths and weaknesses, or a "medical/deficit" view --- where neurodiversity was seen as a disadvantageous medical condition. The former view was associated with expressions of greater career ambition and academic self-esteem, while the latter view was associated more with processes for obtaining the Disabled Students' Allowance.

While Jonathan Mitchell attributes the rosier outlook of the students who thought of themselves as "different" rather than "broken" or "damaged" to the former group's having fewer objective challenges than the latter, Joseph suggests that the difference might lie entirely in the two groups' worldviews. If you know your mind works differently from most people's, it makes sense that your appraisal of your own abilities and potential will vary with the value you assign to those differences. If you see them all as pathological, and yourself as something less than a whole person, of course you won't think much of your chances for future success and happiness. At the same time, if you see yourself as having special gifts to offset your difficulties, you'll probably be more optimistic, both about your future and about your present accomplishments.

The report itself doesn't give enough information to rule out either of those possibilities. In terms of methods, this was a qualitative rather than quantitative kind of study, and thus most of its "data" were in the form of common themes emerging from the students' life stories. As the focus of the report was on the students' attitudes and experiences, rather than on academic or life outcomes, there was no information given about the students' relative aptitudes, "functional levels" or whether these correlated in any way with self-esteem or beliefs about neurodiversity.

The researchers tracked four things: students' view of neurodiversity (which they split into two categories, "Difference/Strengths" and "Medical/Deficit"); students' experience, if any, of being called names (like "stupid" or "lazy") by unsympathetic teachers; students' "academic self-esteem" (which I imagine means how good a student you think you are); and students' plans for the future (which fell into three categories, Ambitious, Uncertain and Negative, or various combinations of those). They found that most of the students who viewed themselves in terms of the medical model of disability, with its focus on deficits, were uncertain or pessimistic about their futures and more likely to have low academic self-esteem.

13 of the participants viewed their neurodiversity as an entirely negative matter. These participants frequently used negative or medical terminology[**] when talking about their labels which indicated that they felt in some way broken or damaged. Of the 13 students who had this view, 8 indicated low academic self-esteem and expressed confusion and uncertainty about their future plans.

As Joseph says, these findings could be explained just as well by either hypothesis. The less-optimistic students could just be less gifted, and their pessimism a realistic appraisal of their likely prospects. They could just as easily be pessimistic because they have learned to see themselves in a pessimistic light.

While nothing in the study clearly supports one hypothesis over the other, I did see something that cast just a little bit of doubt on the contention that the more confident, optimistic students are objectively smarter or better adapted than the gloomier ones: Almost every student (six out of seven) who had been called unflattering names by a teacher went on to develop a difference- or strength-based view of hirself (rather than a deficit-based one), and most of them (five out of six) had good academic self-esteem and half of them (three out of six, with two of the remaining three not answering the question) saw themselves having bright futures. This group of students also represented more than half (six out of eleven) of the Difference/Strength group. Clearly, the Difference/Strength group cannot be so brilliantly high-functioning as to have sailed through their earlier schooling without a hitch, if so many of them have been singled out for individual denunciation by various teachers.

The researchers explain this by invoking the students' determination. When their teachers antagonize them, the students become motivated to prove the teachers wrong.

This post has already gotten long, so I will end here for now. I would like to look at some of the literature on self-esteem, though, to see if I can't throw some light on what factors do and don't influence it. Ideally, I could also dig up some specific research into self-esteem in autism, though so far I haven't found any such articles. I would, even speaking from a position of total ignorance so far, be willing to hypothesize that different factors influence self-esteem in autistic people than in NTs.

*Miss Gonzo Galore pointed out in comments that it is misleading to speak of "pro-" or "anti-neurodiversity," as most autistics have probably not politicized the issue. I think this is quite likely true, and thus have used a somewhat more broad-based framing terminology.

**As a side note, I think I should point out that just using "negative or medical terminology" to talk about one's neurological wiring doesn't have to imply any particular attitude toward that wiring. It could just reflect how one has learned to talk about one's differences, which are often very hard to articulate. I will often use both medical terminology *AND* "negative" phrasing (as in, "I don't do X" or "I completely lack Y") because 1) the medical term for a thing is often the first --- or only --- name I've ever seen for that thing, and it's easier to name something than to describe it; and 2) when describing how my mind works to NTs, I often find it's easiest to start by telling them what their minds do that mine doesn't do. From there, I can move on to what I do instead.

Edward Griffin, David Pollak (2009). Student experiences of neurodiversity in higher education: insights from the BRAINHE project Dyslexia, 15 (1), 23-41 DOI: 10.1002/dys.383

5 comments:

Miss Gonzo Galore said...

Oh Mitchell's logic... *sighs*

Someone should tell him, that talking about a glass that is half full instead of half empty, doesn't actually change the contents of the glass.

What you said in your second footnote is so true, it's really difficult to avoid the medical terminology when explaining neurological differences while wanting to put them into a cultural context.

jonathan said...

Someone should tell him, that talking about a glass that is half full instead of half empty, doesn't actually change the contents of the glass.

I agree completely miss Gonzo. It is you and the rest of the ND community that needs to understand this, not me. Autism is still a disability that prevents people from being able to talk, causes them to smear feces on walls and be totally dysfunctional in its most severe cases. Trying to make the glass half full by describing it as a different form of brain wiring rather than a disease indeed does not change the contents of the glass. It is still a bad thing that needs to be cured no matter how much phoney baloney spin you and the rest of the ND put upon it and try to make a glass half full.

jonathan said...
This comment has been removed by the author.
Lindsay said...

Jonathan,

Sorry about the delayed response. I have not been ignoring your comment, it's just taken me a long time to think up something productive to say to it.

Autism is a disability

Yes! We agree on that.

Here's where the social model of disability comes in: I (and other neurodiversity bloggers) believe that many of the bad outcomes people with autism face --- unemployment, underemployment, higher rates of depression, anxiety and other mental-health problems, isolation, poverty, homelessness, institutionalization, etc. --- stem from external factors, like cultural attitudes and the organization of society.

We believe a moral imperative exists to remove these barriers to greater participation in society. I think the range of people whose lives would be improved (and who would be better able to participate meaningfully in public life --- an obvious Good Thing for a democratic society) extends far beyond those on the autism spectrum.

Where I might differ from some neurodiversity bloggers is that I am willing to grant that some inherent features of autism might be disabling, burdensome or otherwise unpleasant. Examples? Well, I think part of our greater susceptibility to anxiety disorders lies in our physiology --- with our higher baseline levels of arousal --- and I also think the sensory issues some of us have can be quite disabling. (I know mine are, at any rate!)

Accordingly, I have no problem at all with autistics seeking to alleviate these symptoms. I'd also jump for joy if anybody decided to develop, say, an anxiety pill specifically tailored to the autistic brain. (Heck, I'd jump for joy if anybody developed any sort of specifically targeted psych med --- as it is, the side effects often outweigh the benefits).

But I do not think the idea of a cure for autism is anything more than a colossal blind alley. I strongly doubt its possibility, for one thing, given how many different genes have been shown to play a role in its heredity, and the tiny share of all cases of autism each gene is found to explain; and for another, I think it's ridiculous to try to engineer away an entire category of people on the grounds that *SOME* of those people lead miserable lives for reasons that might be partially attributable to their genetic makeup.

Lindsay said...

Whee!

Epic comment is epic.