Identity politics is always controversial. Politics has a tendency to generate controversy by itself, but it’s surely aided by the fact that this time it’s personal, by definition. At the same time, it’s so immensely important that I think it’s important to be controversial at times. To take a stand you know will alienate and anger some portion of society, a stand that you know will likely cost you some portion of your audience and the respect of some portion of your peers. It’s important. Not to troll, not to generate controversy for fun, but to brave controversy and take a stand because you believe that stand is both important and right. While I’m aware that I may anger or bore some people, I’m going to elaborate properly on this autism thing, because it’s important. Not only for autists, but for everyone, because it goes right into the heart of the questions, “who am I?” “Who are we?” “How should we live with each other?”
The conflict between autists and groups like Autism Speaks, which is run by parents and caregivers, is layered. The first problem is that “Autism Speaks” is an oxymoron. It may be hard to swallow, but if your child is non-communicative, no one can speak for it. It is noxiously presumptuous for a parent or caregiver to assume that they can speak for those they care for who aren’t capable of speaking for themselves. It creates the democratic illusion that the voices of those most profoundly affected are heard, but in reality, this couldn’t possibly be so. It reminds me of shamanism or psychic mediums. I don’t mean to ascribe ill intent; I won’t accuse parents of wilfully hurting their children. But what they are doing if they presume to speak for those who can’t may be worse than what might have happened if they had been acting with ill intent. There is a gulf of empathy between an autist and the world that is equally wide from both sides. Just like an autist cannot picture the minds of other people, other people cannot picture the mind of an autist. This means that, unless the autist is communicating his take on things, there is no way for the external world to tell. Parents and caregivers may imagine that they are simply acting as loudspeakers, amplifying what their children are saying so that the rest of the world can hear without filtering or distorting the sound in the process, but this is an illusion. Maybe they are, if their child is “mildly” autistic, but in the case of low-functioning autistics who hardly communicate at all, this is simply a harmful fantasy.
The conflict, then, lies between autists and those who presume to speak for them. At this point, it is often pointed out that the autistic awareness/neurodiversity movement is itself led by those autists who are best able to communicate with the outside world (naturally). In other words, the most prominent voices of autistic awareness are those who are the closest to the rest of the world, i.e., the least autistic, the most unlike other autists. How, then, can they presume to speak for all autists? This viewpoint is expressed in the comment section of the Wired article:
This man is clearly high-functioning Asperger’s. I’m happy for him, but he and his group have absolutely NO right to try to speak for the vast majority of people with autism who (a) either speak little or not at all, and (b), will never be able to get through a single day with the continuous assistance and supervision of those who love them.
There are two problems with this assertion. First, this commenter is a parent with an autistic child. She is, presumably, more familiar with the day-to-day reality of living with a low-functioning autist than most high-functioning autists. If the autistic awareness movement was trying to speak about that reality, the reality of living with an autist unable to cope at all without constant supervision, they would indeed be speaking about matters they know nothing about. But the issue here is not the experience of living with an autist. The issue is the experience of living as an autist. Those of us who aren’t low-functioning autists will never know what living as a low-functioning autist is like, but it seems reasonable that those who are a little autistic would know more about the experience of being autistic than those who aren’t even a little autistic. If autism is a spectrum from unaffected to severe, then those who are farther towards severe are probably going to know more about the phenomenology of severe autism than those who are way off on the other end. It feels a little like an American telling, say, a Korean that he has no right to speak about Chinese culture. Korea and China are neighbors, sharing a long history of cultural influence and so on, and the cultures are a lot more similar to each other than American culture, if that is even coherent, is to either one.
However, there is no doubt that there’s a huge gulf between high-functioning and low-functioning autists. Even if it seems reasonable to suggest that high-functioning autists know more about the experience of autism than non-autistics, the differences are still so vast that high-functioning autists can’t really presume to speak for all autists. If and when that is what the neurodiversity movement is doing, they’re wrong, even if not as completely and utterly off-base as some parents and caregivers claim. But often, that isn’t what they’re trying to do. At least some of the time, the movement seems to be making the same point I made above: that no one can speak for “the vast majority of people with autism who speak little or not at all”. The people who have every right to speak for these people are, by definition, incapable of doing it. Those who live every day with an autist may know what that is like, but that doesn’t mean they know what it’s like to live every day as an autist.
While parents and caregivers can’t speak for those they care for, they can certainly speak on behalf of their best interests. They can and should speak out to ensure that their charges are given all the help they need to live as well as they can. This, however, is where the second disagreement lies, and it’s probably where most of the rhetoric ammo is spent. What, exactly, are autists’ best interests? How do we make their lives as great as they can possibly be? While we can provide for them physically, ensure they are fed, that they’re clean, that they’re not in physical pain — and both groups agree that this should be done as well as possible — there is considerable debate about how best to take care of their psychological lives, their mental well-being. Since we don’t have access to the inner lives of low-functioning autists, since they often give few or confusing indications about their inner lives, this is a sort of free-for-all land where no one — despite parents’ claims to the opposite — has more “right” to speculate than anyone else. Speculation is all we’ve got, and it seems to me that, in the absence of a voice for the voiceless, in absence of a clear empirical test, the best we can do is listen to those arguments — from whoever puts them forth: autist, non-autist, parent, society at large — that seem the most logical and most clearly rooted in fact.
Communicative autists, those who are similar enough to the rest of the world that they can, to some extent, relay meaning to and receive meaning from it, are in a unique position: they can both give concrete feedback on what does and does not improve their own mental wellbeing, and they can speculate about what would benefit those farther along the spectrum. These two roles are often muddled, which is sad, but that doesn’t mean high-functioning autists should be barred from either one on principle. The stakes are high both in material terms (how to organize vast resources) and in emotional terms.
The neurodiversity movement generally opposes a “cure” for autism on two grounds, one pragmatic, the other more philosophical. Some pragmatists would welcome a cure if there were one, but argue that diverting resources to researching a cure or prevention that is probably a long ways off is wasteful when those resources could have been better spent on helping those who are already autistic without curing them. The argument goes, shoveling money into the long-term goal of a cure is disastrous in the short-term: those who are alive and autists today may not even live to see the cure; are they to live in preventable misery because of some pie-in-the-sky proposition? Is a far-off hope enough to offset the short-term losses?
The more philosophical argument has to do with whether a cure is desirable quite apart from the contingent fact that it doesn’t exist. Mills wrote something interesting in response to my quote:
A similar concern vexes many of the mentally-ill; those who choose medication tend to conclude that the part of their mind being treated is alien, not “who they are” but a malfunctioning obstruction to being who they want to be. But one wonders.
It’s hard to speak about hypotheticals, because in the absence of an anchoring reality, there’s nothing holding us back from imagining all sorts of crazy things. It’s surely a reduction of a very complex issue, but it still seems generally correct to say that at least for some mental illnesses, there exist medications that essentially remove or heal the malfunctioning parts of the patient’s brain while leaving the rest intact; an appropriate analogy might be with a tumor, where one may cut out the source of the illness while (usually) leaving the rest of the person intact. The radical transformation of mind that I imagined in my previous post isn’t present. The patient is permitted to “conclude that the part of their mind being treated is alien”. That this sort of thinking applies to autism is the idea Ne’eman is reacting to when he says:
How can I draw a line around one part of my brain and say that this is the autistic part, and the rest of me is something else? That way of looking at autism is predicated on the strange idea that there was or is a normal person somewhere inside me, hidden by autism, and struggling to get out.
According to Ne’eman, mental illness isn’t analogous with autism. You can’t block off one part of the mind and label it “alien”, label it “the autism” and then treat or remove it and end up with the same mind without the “malfunctioning obstruction to being” what that mind wants to be. At least, that seems to be Ne’eman’s thinking (and that’s a line of thought he shares with most of the vocal parts of the neurodiversity movement). I’m sympathetic to this position because of the way autism is defined. The disorders on the autistic spectrum are classified as pervasive developmental disorders. Unlike almost all mental illnesses, autistic spectrum disorders are characterized by divergence from the norm almost across the board: both in perception, emotion and cognition. Autists see, hear, small, taste and feel the world differently; they may experience emotions differently; their way of thinking is almost certainly different. Not only do they do these things, they have always done so. There is very little to suggest that there is something beneath or beyond all this different-thinking that is the same as what’s in the mind of everyone else. There’s no part of an autist’s mind that can be extracted or seen as alien; there’s no “the autism” and “the rest”, or at least, that is what both experience and available science tells me.
The opposing viewpoint is again expressed in Wired’s comment section:
However, as a parent of two young men with aspergers I take exception to his idea that my children’s world should revolve around the fact that they are autistic. They are many things and their autism is just one aspect of their personalities.
I think this is wrong. Autism isn’t just one aspect of their personalities. In fact, it isn’t an aspect of personality at all. It is, rather, a pervasive feature of personality. It is a factor that influences every or almost every aspect of an autist’s personality, cognition, perception, emotion. It’s not an attribute like “shy” or “curious”, it’s rather an overall disposition that permeates every part of someone’s personality. One should not reduce anyone to a one-word description like “autistic”, but at the same time, it would be hard to justify the idea that an autist is something “more” than autistic. I’m not saying that all we should see them as is autists — that would be horrible! — but rather that whatever they are, they are so autistically. It’s a mode of being more than an attribute. It’s not a checkbox, it’s more like a little something that nudges the pen that is filling in all the checkboxes. Or perhaps it would be more accurate to describe it, if we’re going to go full out on the personality-as-set-of-checkboxes metaphor, as a little doodle that decorates every check mark, every empty box. The point is that it’s not, or at least doesn’t seem to be, the same kind of thing as either mental illness or personality traits. It’s something else altogether, and to treat it as either of those would be a category error. A programming language compiler would complain of type errors, of operations and relations being applied to an object those operations/relations don’t apply to. If you tried to run said program anyway, it would crash and burn. Analogy end.
Now, if we accept the above argument, that autism is inseparable from personality, my thought experiment becomes very relevant. Suppose that perfect brain transplants were possible. This is a thought experiment, so let me have some scifi technology to lay out a point. It’s possible to remove a brain from a body, keeping that body alive long enough to attach another brain to that body, so that, post-surgery, the transplanted brain is as capable of receiving information from and influencing the new body as it was in the old. Assuming all this is possible, would you sign up for an operation where someone would remove your brain, throw it in the trash, and hook up a different brain to your body? I think that sounds like suicide, and that, if done without your consent, it’s murder. Now, in the case of an autism pill, it would, if you accept the inseparability of personality and autism, pretty much amount to the above. Out would the old brain, the old mind go; in with the new one, radically different from the old. In this case, one doesn’t literally install a new brain and throw out the old one; instead, the old one is quickly transformed into the new. But assuming that you wouldn’t want someone to throw out your brain and install another one in your body, would it make a difference if, instead, someone zapped your brain with radiation that in short order re-arranged all your neurons so that they formed the new brain? Wouldn’t this scenario play out pretty much the same?
A counter-argument is that we change all the time. We change our minds about things; we gain or shed habits. Gradually, we become someone else. I’m not the same person I was five years ago. Is change so bad? How can you compare such change to death? If my changing from who I was five years ago to who I am today was not a murder of my self-from-five-years-ago, why would an autism cure be murder of an autistic self? The difference is the speed and nature of the changes. The pervasive neural reordering probably needed to “cure” a pervasive developmental disorder would be much more radical, and probably much happen faster, than the usual fare. Again, refer to the thought experiment above. If you grant time travel as well, would you allow someone to install your seventy-year brain in your twenty-year-old body, discarding the twenty-year-old self? Changing an autist to a non-autist would likely be more radical than the changes that happen to a normal brain over a fifty-year time period.
But finding a cure and treating specific problems or working out alternative solutions to them are different things. Those who oppose a “cure” rarely oppose any and all kinds of “treatment”. That’s a straw man.
A separate issue about which I could’ve written as much as I already have is the issue of choice. Who gets to choose whom this theoretical cure will be applied to? This is very difficult, because the parent-child model doesn’t work on autistic adults. Even severely disabled autists may still maintain some level of agency that differs from or exceeds that of a child. The phrase “developmental disorder” suggests that something went wrong in development, that either there was a wrong turn somewhere, or that the road simply stopped at some point, that development froze at some level less than that of a healthy adult. Neither is correct. Autistic adults aren’t children, and how and when to make decisions for them isn’t a clear-cut issue. But I’ve written enough already.
Oct 12, 2010