The Validity of Autistic Opinions

"Given the very nature of autism, the perceptions of those who suffer from it are likely to be skewed - and skewed in ways which outsiders are not yet able to understand or predict. In short, messages from the autistic mind are transmitted on suspect equipment." --David Newnham, News from Nowhere¹

I recently read part of a book which was written by an "expert" on autism. The author mentioned the autobiographical accounts and essays by autistic people, saying that they might not be a good source of information about what concerns professionals about autism. For example, the author mentioned, due to a lack of interest in social situations, the autistic people might not give a clear picture of their social skills deficits. This would provoke a biased look at autism, according to the author.

There are several problems with these statements.

The first is the assumption that the people who research autism, the so-called "autism experts", are the ones with the most valid opinions on autism. The reality is that, just as autistics must often guess as to the motivations of neurotypicals ("normal people" or non-autistics), neurotypical researchers and doctors are guessing as to the motivations of autistic people. They see our problems as a result of the "triad of impairments" or "allergic reactions" or "sensory integration difficulties" or whatever their latest theory is, and forget about what is right in front of them -- the autistic person.

There is a common assumption, that autism is just a disorder composed of difficulties in various areas, rather than a different kind of configuration that results in far more than just the parts doctors pick up on. There is a tendency, also, to see autistic individuals as needing outside interpretation to tell us what is really going on with us. In reality, autistic people have the same range of judgment about ourselves as neurotypicals, perhaps with a greater tendency toward accuracy because of a greater tendency to be uninfluenced by societal expectations of how we should think. While there is a tendency for some autistics to repeat the latest theory they have heard from their doctor, there is also a tendency toward extremely good insight that could not come from a doctor or other so-called "expert".

It is important to realise that autism is not solely a collection of impairments. Certainly, autistic people can be impaired in many areas, but so can neurotypicals. Neurotypicals are rarely made to see themselves as having social impairment for being easily deceived by social situations and social desires (as many tend to be), yet autistics are made to see ourselves as impaired for "lacking social skills" or "lacking social desires" (both of which may indeed be false statements in many of the cases in which they are applied). Neurotypicals are rarely made to see themselves as having cognitive or communication impairment for having difficulty thinking outside of language or symbol (as many tend to be), yet autistics with other modes of thinking are made to see ourselves as impaired for "lacking language skills" or "lacking symbolic thought". Neurotypicals are rarely made to see themselves as having impaired imagination for often putting social games above mechanical games as children, yet autistics are made to see ourselves as impaired in imagination for preferring mechanical things to social things. Even the things that bother us the most about being autistic are some of the least-researched, while a lot of time and effort is spent researching things that are more an effect of the difference between autistic people and neurotypicals (when they aren't just neurotypical fantasies about what autism is) than something that results from being autistic alone.

What is really going on is something like a difficulty in translation between two or more species (there are many varieties of autism just as there are many varieties of neurotypicality) who happen to share a common physical species. It is a group of dogs convinced that a cat lashing his tail in anger is really "wagging" his tail playfully. This kind of communicative misunderstanding should not be simply blamed on the autistic person, or on the "impairments that come with autism." As I have seen in more than one circumstance, a neurotypical placed in the midst of autistics can and will look out of place, different, "impaired", and confused. What exists is a gap in comprehension, and that gap runs both ways

Where the real "bias" comes in is where you get an outside view, by a neurotypical with neurotypical values and morals, who seeks to impose those values and morals on an autistic or (as in most cases) on all autistics. The values and morals might match up now and then (both neurotypicals and autistics have basic human rights, for example) and might be drastically different (an autistic might think of truth and honesty as overriding social rules, while a neurotypical might see the autistic as "tactless" or "rude" or even "malicious".) The relative importance of many things, to neurotypicals and autistics, can be extremely different. Saying that the neurotypical view is better, and that the autistic way is worse, is an enormous bias.

If you read an autobiography of a neurotypical, you will generally not read about their "strange preference of social activities to mechanical activities as a child" or their "difficulty in thinking outside of language and symbol" (not that these are universal characteristics of the neurotypical, but nor are their opposites truly universal characteristics of the autistic). You will read about the things that were important to them in their life, written usually in a style that suits this.

Autistics, however, are apparently expected to make a display case out of ourselves. If our writings do not contain several direct references to our "impairments" (which even if they do exist, may not be what we want to write about), either our judgment or our autism itself is brought into question. After all, why on earth would an autistic write an autobiography if it weren't to make a display case out of herself and her supposed faults and impairments? Why would an autistic possibly want to write something that showed who she was, not what her symptoms were? Why, above all, would an autistic want to write something that did not totally fit the expert opinions of the time period (can you imagine if we all had to write about our supposedly unfeeling "refrigerator mothers", a la Kanner/Bettelheim?) but instead fit her own experience of life?

(By the way, irony, metaphor, and humor are said to be beyond the reach of autistics.)

Autistics are not expected to write autobiographies. We are expected to write textbooks, which happen to be about ourselves. We are expected to be museum exhibits, and well-behaved museum exhibits at that. As soon as we stop behaving as we should, we are either explained away in terms of the latest theory, or taken off the shelves. (Oops, did I use another metaphor? I shouldn't do that. I guess I don't get my poker chips and M&Ms for the day.) We often feel obligated to write long descriptions of how things are for us, partly because of the "museum exhibit" expectations and partly because of the huge misconceptions that exist out there about autism.

If you're going to read us, read us. If you're going to study us, study us. But keep in mind you're dealing, from the "lowest" to the "highest" functioning, with sentient beings, with an extraordinary (if only because we are reputed not to have it) capability for knowing what is comfortable and what is uncomfortable, and what is important and what is unimportant, in our lives.

Professionals who do not think that autistic people write things that concern them, should take a long and hard look at themselves and their assumptions about autism. They should especially look at why they themselves should be so concerned with these things, things that apparently (even according to them) do not concern the autistic writers whom they are reading, with blinders on, in search of "insight".

¹Since people have asked a lot, the two articles that sparked this one are Francesca Happe's article criticizing autistic autobiographies in Uta Frith's book Autism and Asperger Syndrome; and the article News From Nowhere, which in addition to insulting autistic people, commits the usual trick of referring to all autistic people who can speak, regardless of actual diagnosis or of communicativeness of speech, as having Asperger's syndrome. Doing this is a standard way to make certain people seem "less autistic" and their opinions "less valid" when it comes to autism.

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