Saturday, July 27, 2013

All Developmental Disability Is Autism?

Amanda Forest Vivian pointed out something interesting in this post (about a singer using the words "autistic" and "retarded" pejoratively, and then apologizing for it): People seem to be confusing autism, one particular developmental disability, with developmental disability in general.

Here is what she says:
There was a time when all developmental disability was assumed to be intellectual disability and people were confused by the word autism. Now the opposite seems to have happened--for example, when people find out I work with someone who is nonspeaking, they immediately assume she has autism, instead of realizing that there are many disabilities that could cause someone to be nonspeaking. In general, people will often describe anyone with a developmental disability as being "autistic"--even though intellectual disability is the most common developmental disability!
I thought of two reasons why this might be happening, one simple and one not so simple. The simple explanation is all the Autism Awareness campaigns --- people are hyper-aware of autism (aware that it exists, anyway; maybe not always of what it is), and have forgotten that other developmental disabilities exist. (Or maybe it's not so much that they've forgotten, but that the concept "autism" is always lurking near the forefront of their minds, ready to be applied to any person whom they might previously have categorized as retarded, crazy, spastic, etc.)

Also, with how much talk there is of an Autism Epidemic, people might be expecting to see autistic people a lot more frequently than they used to. In some ways, this is good --- people know that we exist, and that we live right alongside them and do many of the same things that they do --- and in some ways it hasn't gone far enough --- people don't seem anywhere near as aware of the existence of autistic adults as they are of autistic children --- but maybe it has also made it so that people expect to see more autistic people than there are, and maybe they're filling up the gap between how many autistic people they expect to see and how many autistic people they do see by lumping other developmentally disabled people into that category. 

It's annoying because autism is not the same as other developmental disabilities, and autism awareness at the expense of other disabilities might make it harder for people with other disabilities to get people to understand them, or make the accommodations they need as opposed to the accommodations autistic people are understood to need.

The second, harder-to-explain thing that occurred to me was that maybe the substitution of autism for developmental disability in general might reflect a value judgment*.

Non-disabled people are afraid of disability. They're afraid of disability because they know it could happen to them (or to their kid, if it's a developmental disability), and because this is an ableist culture that tells people that a life with disability is akin to death**. (Though, mercifully, I think there might be starting to be a little pushback on that point making it into mainstream consciousness --- disability activists have always said that our lives are worth living, but now a few scholars and journalists, here and there, seem to be listening.)

I think Western culture also fetishizes intelligence***, and sees it as one of the few things that can make up for the monstrous faux pas of having a disability in the first place.

You can see a marked difference in how allistic people talk about the autistic people they see as "low-functioning" --- i.e., having intellectual disability**** --- versus those they see as "high-functioning." The former they talk about as if they were not people at all, and in frankly eugenic terms about how much better off everyone would be if they didn't exist; they talk about how expensive such people are, and what a terrible burden they are on their families, the state, or both. If they mention quality of life at all, it's only to say something like, "Nobody could want a life like that..."

Attitudes toward the latter group are somewhat more complicated. Especially with the stereotypical "Aspie," whose impairments are minimal and only affect social interactions and are offset by exceptional intelligence and aptitude for math, science, or computers. They are also thought to be (at least, in their pop-culture incarnation) hyper-rational, like Vulcans, their thought processes uncluttered by emotion and petty interpersonal concerns. (This is an ambivalent form of idealization --- I usually write about it as a negative stereotype, since it also implies that we have no feelings and are amoral, and also that we are something not quite human. I have come to mistrust, intensely, any stereotype that carries that implication, even if it is ostensibly a flattering one, because "you're not human" too easily segues into "you don't have the same rights and protections a human would have." And yet I think there is an element of idealization in it, too.)

So there are competing ideas about these stereotypical autistic geniuses; on the one hand, people tend to mythologize them (or, sometimes, the people who come closest to fitting this stereotype tend to mythologize themselves) as the Prometheuses behind every great technological innovation in human history (c.f. Temple Grandin, "It was probably an Aspie who chipped away at rocks while the other people socialized around the campfire. Without autism traits we might still be living in caves.")

On the other hand, there is definitely a sizeable contingent that would like that category of autistic person to vanish from the Earth as well. I mentioned in an earlier post the growing stereotype of the Aspie psycho-killer (qu'est que c'est), a person whose complete lack of empathy enables them calmly to plan and carry out mass shootings. 

Anyway, my point was that intelligence mitigates the ableist impulse to dehumanize autistic people. Even in autistic people themselves --- how often do you hear, "I'm not disabled; I'm smart!" or some variant thereof? --- you see this come out as a self-defense tactic. I know I used it that way. For me, the problem was that my worldview was too individualistic to see that my individual merits didn't matter; that all people, no matter how smart or stupid, how virtuous or venal, deserve equal rights. I was trying to say, "I'm a person; I deserve to be treated like a person," but because of my internalized ableism it came out as, "But I'm not disabled! You should be treating me like a real person, not a disabled person!"

I think it's entirely possible that this set of biases --- disability is bad, intelligence is good, some autistic people possess intelligence --- might play a small role in explaining why a person who sees a developmentally disabled person jumps to the conclusion that the person is autistic. 

I've also noticed a strain of wishful thinking that says autism isn't really a lifelong condition --- it can be treated, or cured, by (in descending order of battiness) growing up, intensive behavioral training, changing one's diet, taking vitamins and supplements by the fistful, chelation, etc. That might enter into it, too. 

*Obviously I don't think any of this is happening at a conscious level, or with any ill intent. I think that if this is a real thing, and not just something I made up, it's operating at the level of an implicit bias, that you don't even know you have but that can subtly alter what you see to fit what you expect to see.

**Amanda Baggs has written some powerful, if horrifying, things about her own and her mother's experiences with doctors who believe this

***I know this is a very controversial statement, given that I am writing this in an American context, and anti-intellectualism is also a thing in American culture! I may write a post about that, too --- how those two contradictory attitudes coexist.

****I'm not sure that that's ALL "low-functioning" and "high-functioning" mean, but the presence or absence of intellectual disability, indicated by one's IQ score, is used often enough in the literature that I feel confident using it myself. And when I use these phrases, I use them to represent what allistic people think autistic people are like, not what I think accurately describes autistic people. Because I think that, while autistic people do vary in how impaired they are and how much support they need, I don't think degrees of impairment map neatly onto a binary of IQ less than 70 or IQ greater than 70. I also think that the same person can be "high functioning" --- need minimal support --- or "low functioning" --- need intensive supports --- in different contexts. Even Temple Grandin, the high-functioning autistic's high-functioning autistic, was what most people would call "low functioning" as a child.

7 comments:

Anonymous said...

The term mental illness is very controversial upon its artificial conceptual elasticity. In my opinion, it is extremely necessary to separate properly, aspergers and autism auto operation, the classic autistic. So that people can understand what they must have a spectrum as an example of changing colors of a rainbow, and through it, draw conclusions reasonable and correct.
The classic autism is a disorder (and not necessarily a disease, because no one dies of autism, there is a cycle of bacterial contamination, incubation phase symptomatology and consequences that, even cancer is a disease, but a mutation uncontrolled cell), one negative accumulation of psychomotor traits that causes decreased fitness. For any mental disorder, there are continuities and spectra. The disorder is like a dead end, while the spectrum is as if they are the paths that lead to dead end.
The optimum continuous autistic personality is through the borderline for asperger, and some segments withim the aspies. People who have high intelligence and an accumulation moderate autistic traits. The classic autistic features not only all traces (a buildup that reduces fitness) and also has increased. Therefore, hypersensitivity aspergers is multiplied by 3 or 4 them.
I suggest that fights for the rights of all autistic but this does not mean ignoring the differences that exist within the spectrum. People are always oriented groups, identify the primary characteristics and groups is clear that there is great diversity of types and diagnoses within the autism.

Anonymous said...

The classic autism is a disorder, but the aspie and the high functioning autism are both RE-order.

Inez said...

This is great!

Anonymous said...

"(c.f. Temple Grandin, "It was probably an Aspie who chipped away at rocks while the other people socialized around the campfire. Without autism traits we might still be living in caves.")"

Now I gotta wonder...

...who, in that prehistoric scenario Grandin suggests, would have been paying enough attention to other people to help the other people who were babies survive? Babies can't feed themselves and change their own diapers, they need older people to pay attention to them and do these things for them...

Lindsay said...

@Nov. 10 Anonymous - exactly.

I like Temple Grandin, but I criticize her a lot for acting like the only worthwhile autistic people are the "high-functioning," technologically-adept ones. But you are right to point out that in the quoted comment she's also disparaging interpersonal skills --- like she's saying they're not really skills at all, or caregiving is not really work that needs to get done. Which is obviously not true!

I can understand her seizing on something she does well, and envisioning people like herself throughout history making valuable contributions in that area --- if you've been devalued all your life for being different, for lacking something most people have, it's human nature to try and build yourself up a bit, to focus on what you can do, to say, look, I do have value.

But she's not just doing that, she's also contributing to a long-standing cultural trend of devaluing the work that the people "socializ[ing] around the campfire" were doing --- raising children, caring for elders, making sure the community ran smoothly.

Great comment!

Anonymous said...

Aww, thank you! :D

Anonymous said...

Just realized how to say this more clearly: while Grandin says "Without autism traits we might still be living in caves."...

...we remember that, given how many generations ago the rock-chipping scenario is, without interpersonal skills *we might not still be living at all*.

It's not even either/or. For example, all babies who have autism traits need help from other people just like the rest of the babies need.