Jim Sinclair, campaigning for a new understanding of autism, has written against the hope of a “cure” for austim:
Parents often report that learning their child is autistic was the most traumatic thing thaever happened to them. Non-autistic people see autism as a great tragedy … I invite you to look at our autism, and look at your grief, from our perspective. Autism isn’t something a person has, or a “shell” a person is trapped inside. There’s no normal child hidden behind the autism. Autism is a way of being. It’s pervasive; it colours every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person—and if it were possible, the person you’d have left would not be the same person you started with … Therefore, when parents say
I wish my child didn’t have autism,
What they’re really saying is
I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.
Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure.1
A parent of an autistic child has replied in a blog:
Dear Jim,
If I knew my son was going to turn out like you, intelligent, articulate, self-confident and alive, I wouldn’t worry and grieve. I don’t know that though. I can only speculate … And that future projection is based on what I see before me now … Simply on what it is I see autistic children struggling with, and I find it difficult to see how my child at this point in time might overcome such enormous obstacles … The observable reality of sensory overload, confusion, frustration and despair. It’s hard for parents to overcome mourning when each year brings with it new obstacles for our children to navigate … In the same way non autistic people should not assume to understand what existence is like for autistics, those who are not parents of autistic children should not assume to understand what underpins our emotional responses. Parents will do well to listen to autistic adults such as yourself to hopefully better understand how the world might appear to their child … But likewise, autistic self-advocates may do well to listen to parents real concerns and challenges without presuming knowledge of what induces our turmoil.2
Some of the deepest problems in deciding whether a condition impairs a person’s chances of a good human life come to the surface with autism. A humanly adequate way of thinking about it has to try to do justice to the thoughts expressed in both these impressive letters.
During my frustrating, miserable, helpless days, I’ve started imagining what it would be like if everyone was autistic. If autism was regarded simply as a personality type, things would be so much easier and happier for us than they are now.
—Naoki Higashida, The Reason I Jump
People on the autistic landscape often have very successful careers, sometimes based on exceptional intellectual abilities. It is often said (at the same time both half jokingly and half seriously) that unusually many autistic people can be found among distinguished mathematicians, physicists, and philosophers. Others with autism can have outstanding computer skills. Some can read and remember pages of a book after rapidly glancing at them.
Autistic people who have no “compensating” ability are less likely to be able to speak for themselves. They may have different needs from those with “high functioning” autism who can articulate theirs. The very varied impact of autism on the lives of different people may partly explain the passionate disagreements it arouses.
Some who are “high functioning” argue strongly that autism is not a disorder but is part of a harmless and desirable neurodiversity. This can provoke outraged rejection among those close to a child who cannot talk and who is often anxious, screaming, and head-banging. To them it is just obvious that a cure would save both the autistic person and the family from great distress. The advocates of neurodiversity find it equally obvious that they have been caused much distress by the response to the way they are. As with the history of responses to gay sexual orientation, their distinctive features are not accepted and valued, but have been rejected amid talk of “cure” and “normality.”
The issue is whether autism harms people by reducing their ability to have a good life. If it does, there is a case for psychiatric help, directed either at cure or at the containment and alleviation of the condition. In the dispute between the “disorder” and the “neurodiversity” views, the plurality of the autistic landscape may defeat any single answer. Perhaps the parents are right that the problems of their distressed autistic child does greatly impair the child’s chance of a good life. And those who advocate the “harmless neurodiversity” view may themselves be instances of it.
The ideal might be to separate out autistic people who are “flourishing” from others and to offer treatment only to those in the second category. In what follows, the discussion will treat severe and high-functioning autism as separate cases. This is an obvious simplification, aimed at bringing out some issues more clearly before returning to the messier real world. Autism shows the difficulty of drawing a sharp frontier between flourishing and not doing so. Flourishing has many dimensions, and each is a matter of degree. Being “high functioning” is the same. Different dimensions, each with a blurred boundary, may still allow clear cases on each side to be separated from each other. But even some clear cases blur over time. People take off in unexpected ways.
The autistic landscape is varied. There is no single “gene for autism.” Many genes contribute to the autistic triad of social, communicative, and “imaginative” limitations. And, mainly, different genes contribute to different parts of the triad. Even so, there may one day be genetic predictors of the chances of developing autism. If so, familiar ethical dilemmas would follow. In choosing which embryo to implant, would it be ethical to select against autism? Would it be ethical to select for autism?
The idea of a good human life has been much debated in reproductive ethics. One lesbian couple wanted to have a child who would be deaf like them. Their choice of sperm donor fell on someone with hereditary deafness. Critics and supporters of this decision debate whether deafness is a disability and whether it makes for a less good life. In the reproductive debate, no final consensus has been reached. But one key question is, Will the person this embryo will develop into have a decent chance of a good life? (“Decent chance” and “good life” are intentionally vague. Rough-and-ready judgments are the best we can do here.)
The question in reproductive ethics has parallels in psychiatry. Obviously the psychiatric issue is not about bringing someone into the world. It is about whether a severely autistic person now in front of us has a disorder or is just different. A psychiatric disorder has to be harmful, so the question is whether the condition harms the person and, if so, how much. This comes down to, Will this person’s autism significantly limit the extent to which he or she will be able to have a good life? Only if the answer looks more like yes than no is the offer of treatment for disorder appropriate.
There is a risk of answering the question wrongly. The view from outside can miss things. At a conference an articulate and obviously flourishing autistic woman described her inability to communicate as a young child. She said that her lack of communication had not worried her at the time. She had perhaps been happier then than she was later. Communication made her see she was disappointing people.
Then there is the danger of writing off people’s expectations because we have not learned to read their language. A child with persistent head-banging may seem to have a nightmare life. But as noted in Chapter 11, Donna Williams has suggested that head-banging, seen from the inside, can have an intelligible purpose. This still may not stop the head-banging from making the person’s life less good. But it is a warning about too readily making negative judgments about the autistic child’s potential.
Other misjudgments can come from imaginative failures. If a condition such as severe autism greatly restricts the range of interests and enjoyments open to someone, the view from outside may underestimate the intensity of the delight the person gets from a hug, a meeting of the eyes, or a smile. The advantage of starting from what they say is that it links assessments of interventions more closely to the values of those they are supposed to help.
Starting from what they say will sometimes reveal an inner landscape that is less simple than the flattening view from outside. Naoki Higashida, asking what he would do if there was some way he could be normal, starts with the harm autism does him: “Living with special needs is so depressing and so relentless.” This meant that “for ages and ages I badly wanted to be normal.” Now he is not so sure: “But now, even if somebody developed a medicine to cure autism, I might well choose to stay as I am … For us, you see, having autism is normal—so we can’t know for sure what your ‘normal’ is even like. But so long as we can learn to love ourselves, I’m not sure how much it matters whether we’re normal or autistic.”3
In so many ways the answer to the question “disorder or difference?” may be simplified or distorted. But this is not to write off the idea that severe autism calls for the offer of help. Sometimes a person’s seriously impaired life can make talk of neurodiversity insensitive. Clear signs of severe and lasting distress can make criticisms of the mode of assessment seem pedantic. Where the harm is clear, if there is treatment that is likely to help, it should be offered. But even where there is clear harm, this may not be the whole story. There can be harms—contrasted with some Aristotelian view of the good life—that someone like Naoki Higashida might still choose to accept. Sometimes the Aristotelian and the autonomy views of harm pull apart.
Out of the crooked timber of humanity no straight thing was ever made.
—Immanuel Kant, in Isaiah Berlin’s felicitous translation
High-functioning autistic people often echo Jim Sinclair’s objection to hopes for treating and “curing” their condition: that there is no normal person behind the autism. The autistic person is who they are and so to wish away the autism is to wish them away.
Other high-functioning autistic people think autism is a disorder and bridle at being told it is part of their identity. Sandy Starr says that the benevolently intended use of the word “condition” rather than “disorder” may blur the distinction between medical and moral judgments. If autism stops the person from living independently, then there is something medically wrong but not morally wrong. It is not stigmatizing, or lacking in compassion, to say they have a disorder. He also resists the idea that autism is “an identity.” He does not see his own having Asperger’s syndrome as giving him credentials for discussing these issues. He does not think “the merits of your identity take logical priority over the merits of your ideas.”4
It is right that saying someone has a disorder should not discredit the person (though, regrettably, there are those who see some disorders as a stigma). And it is important that we can to some extent choose which characteristics we endorse as part of our “identity.”
Even if there is no “normal” person hidden behind the autism, an autistic mathematician may still choose mathematics but not autism as part of her identity. This is clearly true of some other psychological conditions or problems. Richard Wollheim saw his disgust at the smell of newsprint as too deeply rooted in him to eliminate. It was like a ghost in the house that could be expelled only by demolishing the house. He was “a newsprint-phobic philosopher.” But he might have responded with justified irritation if someone introducing him at one of his lectures had so described him. Sandy Starr is equally entitled to have his ideas argued about on their merits and not as “the view from Asperger’s syndrome.”
But the core of Jim Sinclair’s point is untouched. Some autistic people have good lives as they are, unless pressured to be “normal.” If there is no “normal” person behind the autism, talk of “cure” can be a cruel pressure. This is so even if autism limits their relationships or other aspects of the good life. The human flourishing approach to psychiatry aims to remove obstacles to the good life. Sometimes, with consent, it may be legitimate to offer help in changing some core aspect of a person.
But cases where autism is inextricably bound up with the person’s identity bring out a limit that should be placed on this human flourishing approach. Offers of help toward “normality” can be coercive. (As were offers of help for being gay half a century ago.) What a crude version of the good life tramples on is brought out by Clare Sainsbury: “ ‘Normal’ people may take it as a basic right to be accepted as they are; the rest of us are viewed only in terms of what will make us more acceptable to them. Far from seeming radical or positive, the philosophy of normalization seems painfully familiar to those of us whose very disability lies in our ‘differentness.’ Most of us have already spent years being taught that who we are is fundamentally wrong and in need of ‘cure’ and having others (whether parents or teachers or other professionals) try to force us again and again to do what we cannot do—that is be ‘normal.’ ”5