we need a new term for high-functioning autism

Or, perhaps, we need a more delicate, more nuanced and more intelligently considered use of language when we talk about autism and in particular those who are autistic and high-functioning.

So: I don’t have Tyler Cowen’s new book. I am planning on purchasing it on Amazon soon. (Payday is Friday.) I’m going to restrict myself, then, to this diavlog and the things I’ve read from and about Dr. Cowen’s book online. I have to say, I watched this diavlog, and I said to myself, “This is an argument for those who have never had to restrain a severely autistic child who was trying to smash his face into his desk. For those who have never had to take care of an autistic person who has been rendered entirely nonverbal by the disorder. For those who have never contemplated helping a severely autistic person use the bathroom, or cleaned up after them because they are incapable of doing so.”

This is uncharitable. I have, in fact, little idea about Dr. Cowen’s exposure to those with severe autism. My own exposure to such people has been entirely professional, and I have no right to pretend that I have a personal stake in the issue. Even if I had the most personal connection possible and Dr. Cowen had none, it would change nothing about either his argument or my own. Indeed, I said this very thing in my first post in which I asserted that austism is a disorder, and in my later (less successful) follow-up on that issue. (I encourage anyone reading on to read the first post in which I lay out why I believe autism is best viewed as a disorder.) But I think that Dr. Cowen is deeply wrong in how he talks about autism, and I think it is a symptom of a broad misunderstanding about the reality of life for most autistic people, one which has serious and negative consequences for autistics.

Autism is indeed considered by medical science to be a spectrum. There is a great deal of scientific literature that supports the idea that people with the kinds of severe autism I am talking about are different in degree from high-functioning  autistics, and not different in kind. But that divide in degree matters, and severely disable autistic people exist, and their needs and values are important. Yet they seem to be becoming increasingly marginalized by the general discourse about autism. The needs of those who are the least disadvantaged, the high-functioning autistics, are perversely becoming central. And the tendency to see autism in romanticized terms has obscured the condition so thoroughly that many people have come to see autism as merely being a set of personality traits with no attendant cognitive, social or developmental impairments. And this simply is not an accurate picture of how most people must confront the disorder. Most autistic people are not Mozart. Most autistic people are not high functioning. Most autistic people are not merely shy dreamers but instead face significant, persistent disadvantages in their lives because of their disorder. The percentage of autistic people with savant capabilities is quite small. Most people with autism, to my understanding, are genuinely disadvantaged by their condition, and it often hurts their ability to learn, to communicate, to demonstrate emotions, and to live fully realized, complete lives. And some number of them are far more impaired, incapable of dressing themselves, controlling their bathroom functions, or controlling themselves enough so that they don’t do great physical harms to themselves or to those around them.  Don’t take my word for it. Talk to the parents and families of severely autistic people. Or talk to those who work with them professionally, doctors and caregivers.

The idea that autism represents for most people who have it a value-neutral aspect of their lives, or even a positive, can only the product of an entirely romanticized view of a condition that afflicts thousands with debilitating disadvantages. And it does no good for anyone with autism for our culture to increasingly consider the condition in a way that has nothing to do with the lives of countless people who suffer from it. Autistic people deserve respect, dignity and, to the degree they are able, autonomy. I am deeply opposed to forcing anyone to take medication, and to terminating pregnancies because genetic screening has revealed the child to have a cognitive or neurological disorder. (I do, however, support abortion rights independent of motivation, and thus would not advocate the state trying to ban such practice. Certainly, I would not ever abort a child of my own because he or she was revealed to be likely to be autistic, or have any other developmental or cognitive impairment.) But I remain convinced thatautism is a medical disorder, that the way that it impacts the lives of most people who have it and their families is as a disorder, and that this is the best way a compassionate society that values the opinions of medical science should look at it.

All of this takes place, meanwhile, in a context of extreme, even celebrated emotionalism regarding the condition, which obscures the debate and makes effective discussion difficult. After I wrote my post asserting that autism is a disorder and its follow-up, I was buffeted by comments and emails asserting that I was disrespectul of autistic people and their families, that I wanted to enforce medication, that I wanted to practice eugenics against autistics, and that in general that I had antipathy not towards the disorder but towards those who had it. Not one of those things is true. But such mischaracterization is common practice in a national discussion that has been hijacked by an extremist fringe, by conspiracy theorizing, and by a crude caricature of the liberal project that confuses the desire to liberate and support certain kinds of difference with a mindset that utterly abandons the ability to make meaningful distinctions between kinds of difference, and which in the commission of respecting all differences comes perilously close to being supportive of a condition that causes tremendous and real human suffering.

(Incidentally, Dr. Cowen and Wilkinson object to the human capacity of creating narratives that are attractive over being completely accurate. But what could be a more obvious, attractive narrative than the idea of beautiful shy dreamers, who have been forced into society’s conventions for too long, who are actually quite capable of genius and achievement if only they could stop being held back by the conformity of society…. But that narrative has nothing whatsoever to do with the lives of thousands of severely impaired people and the families that must care for them.)

When I hear Wilkinson and Dr. Cowen saying, with absolute good faith and a desire to be respectful and helpful, that they don’t think calling autism a disorder is helpful, all I can think about is the face of a child that I’ve seen who bashed his face so severely he was bleeding and bruised– and his mother, convulsing in tears because she was utterly incapable of helping him. My question for Dr. Cowen, and everyone else, is whether this child or his mother is helped by a vision of autism that inherently diminishes our understanding of the truly immense suffering many autistic people go through. I ask whose needs, precisely, are we most interested in serving. Whenever I hear yet another person in a social setting say that she is, like, totally autistic, in the commission of spinning some facile, self-aggrandizing narrative about her life, I ask whether we have broadened a term to the point where we have cheapened and degraded it. When parents who have been forced to turn to shocking their child with electricity because it is the only thing that keeps their child from hitting himself so hard that he risks brain-damage, and people have the gall to say that they are “enforcing neurotypicality” rather than trying desperately to ensure the safety and health of a child they love very much, I ask if we haven’t worked ourselves into a startlingly unhelpful, sanctimonious and blinkered intellectual space.

So: I would like a new language of autism to be used that distinguishes between high functioning autistics, those who can legitimately be considered to simply have a different “cognitive profile,” and those who, like the students I used to work with, faced such immense hardship no one could think to question whether they were disordered. I am very glad that understanding autism has given Dr. Cowen greater insight into his own life and helped him to better understand his patterns of thinking and vision of the world. But Dr. Cowen, though I’m sure legitimately on the autism spectrum, is a successful professor, a renowned blogger and a fully functioning adult and member of a civil society. To say that he is autistic, and apply the same term to the children who I worked with who were struggling to live their lives, does not seem to me to be a mature or pragmatic way of looking at the world. And further to say that Dr. Cowen and these children and those like them share not only the same condition but that we must pronounce both those conditions good, without discrimination or choice, seems to me to be a recipe for failing the side who needs help the most. And I cannot escape the feeling that, somehow, in a movement that I absolutely admit is an attempt to do right, there is emerging a perspective that is in effect unspeakably cruel to those who need no more cruelty from life.