Many years later, Eustacia could admire whom Temple had become. “Slowly, with no innate concept, no intuitive clue—conscious intelligence her only guide, and even then not sure—she’s taught herself over the years ‘to meet the faces that you meet.’ How bright and brave of her to want to meet us anyway, armed with such a flimsy, homemade mask. Autism is an exaggeration of what lies in us all. And studying it has been my form of exorcism.” This does not mean that it has been free of disappointments. “Despite her extraordinary accomplishments, she knows that some part of the dream that I call ‘life’ lies a little beyond her. It accounts for her hunger to have me understand her dream: that she won’t be forgotten. Her longing for some kind of recognition is so palpably real. As if love were too shaky and mysterious to rely on.”
Temple receives thousands of letters from parents and readily offers advice. “Some of these kids, you’ve got to jerk them out of it. If you’re not somewhat intrusive, you’re not going to get anywhere with them,” she said. Temple advocates behavioral and medical treatments, and anything to engender literacy. “Your kid is throwing a fit in Walmart because he feels like he’s inside the speaker at a rock concert. He’s seeing like a kaleidoscope; hearing’s fading in and out, and full of static. I think some of those kids are getting scrambled HBO, but every once in a while, you get a little bit of an image in that scrambled HBO.” Temple believes firmly that the higher-functioning you can make someone, the happier he is likely to be. Autistic children should develop skills consistent with their capacities. “You’ve got a kid who loves geology. Well, instead of developing his interest into a career, parents and teachers and therapists get hung up on social-skills training. And social-skills training’s really important. But don’t get so hung up on that, that you neglect his gifts.” Temple Grandin attributes her success to her autism; “Genius is an abnormality, too,” she explained to me. Without being self-aggrandizing, Temple has made what the world calls illness the cornerstone of her brilliance.
• • •
Into all of this comes the neurodiversity movement, with its celebration of some aspects of autism. One of the leading autism charities was called Cure Autism Now, since merged with Autism Speaks. While opposing a cure for autism is a bit like opposing intergalactic travel, one of the battle cries of neurodiversity is “Don’t cure autism now.” Like the rest of identity politics, this is an attitude forged and burnished in opposition to prejudice, treading a fine line between revealing a fundamental truth and attempting to create that truth. Conservatives complain that asking the larger society to accept autistic people’s atypical social logic undermines the very principles that make it a society; members of the neurodiversity movement take exception to the idea that autistic behavior lacks social coherence and maintain that it is a different and equally valid system. They fight for their own definition of civil justice.
Thomas Insel said, “It’s really important that we recognize schizophrenia, bipolar disorder, or autism as something that’s happened to someone, that there’s still a someone there who can fight against the illness.” Jim Sinclair, an autistic adult and the cofounder of Autism Network International, wrote, “Autism isn’t something a person has, or a ‘shell’ that a person is trapped inside. There’s no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors 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.” The politically correct terminology in most of the world of disability is to identify the person ahead of the condition: you speak of a “person with deafness” rather than a “deaf person,” or a “person with dwarfism” rather than a “dwarf.” Some autism advocates take issue with the idea that they are “a self with something added,” preferring “autistic person” to “person with autism.” Others favor autistic as a noun, as in, “Autistics should receive social accommodation.” Sinclair has compared “person with autism” to describing a man as a “person with maleness” or a Catholic as a “person with Catholicism.”
Many neurodiversity activists question whether existing treatments are for the benefit of autistic people or for the comfort of their parents. Idiosyncrasies may be unsettling, but how much torment should a child go through to relinquish them? Isabelle Rapin said of her adult patients, “We shouldn’t impose our values of success onto people who really have very different needs.” Joyce Chung, who has an autistic daughter, said, “Our struggle was not to let ourselves experience our child’s condition as a narcissistic injury.” In other words, the autism is something that has happened to the child rather than to the parents. Alex Plank, who has Asperger syndrome and whose Wrong Planet website, an affirming forum for people with autism and their families, has over forty-five thousand members, said, “The organizations that have the best connections are the ones founded by parents of people with autism, which aren’t going to have the same priorities as the autistic people themselves, especially if those parents’ idea of success is to make their kid the same as the parents were when they were kids.” Ari Ne’eman, who has Asperger syndrome and became a prominent self-advocate while still in college, uses the colloquial Aspie to describe himself. He said, “Society has developed a tendency to examine things from the point of view of a bell curve. How far away am I from normal? What can I do to fit in better? But what is on top of the bell curve? Mediocrity. That is the fate of American society if we insist upon pathologizing difference.”
In December 2007, the NYU Child Study Center produced a series of advertisements for their treatment program in the form of ransom notes. One ominously announced, “We have your son. We will make sure he will not be able to care for himself or interact socially as long as he lives. This is only the beginning.” It was signed “Autism.” Another said, “We have your son. We are destroying his ability for social interaction and driving him into a life of complete isolation. It’s up to you now,” and was signed “Asperger Syndrome.” Harold Koplewicz, then director of the center, hoped to propel children with untreated mental health problems into the hands of competent professionals. But the ads were judged demeaning and stigmatizing by many people, including some with autism spectrum disorders. Autism activists spearheaded a campaign against them; the chief organizer was Ne’eman. In a memo to the members of his Autistic Self Advocacy Network, he wrote, “This highly offensive ad campaign relies on some of the oldest and most offensive disability stereotypes to frighten parents into making use of the NYU Child Study Center’s services. While people with diagnoses of autism and Asperger’s often have difficulty with some forms of social interaction, we are not incapable of it and can succeed and thrive on our own terms when supported, accepted and included for who we are.”
Ne’eman initiated a letter-writing campaign and recruited major American disability groups to support his position. The campaign rapidly escalated and was soon reported in the New York Times, the Wall Street Journal, and the Washington Post. Koplewicz was stunned by the protests. On December 17, he insisted the ads were there to stay, but the revolt was escalating, and two days later they were pulled. It was a signal triumph for the neurodiversity movement, and for the broader community that endorses disability rights. In the aftermath of the debacle, Koplewicz conducted an online town-hall meeting, and more than four hundred people participated.
Ari Ne’eman is not without social graces, but you can feel the effort in them. He said, “Neurotypical social interaction is like a second language. One can learn a second language with great fluency, but no one will ever be as comfortable in it as in one’s own tongue.” When Ne’eman was in high school, his intellectual skills, social deficits, and unusual learning style meant that he was considered both disabled and gifted, which made for trouble figuring out what classes he should take. “There’s this stereotype out there of the shiny Aspie, but you have to recognize and r
espect human difference, and the diversity of human neurology, regardless of whether somebody’s academically brilliant,” Ne’eman said. “As a public relations point, it’s nice to have Vernon Smith, who has Asperger’s and won the Nobel in economics, or Tim Page, who has Asperger’s and won a Pulitzer. It’s a point in favor of respecting and recognizing the legitimacy of human neurological diversity. But it would be a deep mistake to say that people should have their differences respected only if they can deliver some special talent.” In 2010, age twenty, Ne’eman was appointed by President Obama to the National Council on Disability. His selection met a firestorm of criticism from those who argued that his positive characterization of autism would reduce funds needed to treat their children.
The term neurodiversity was originally coined by Judy Singer, an Australian sociologist whose mother and daughter both have Asperger’s and who is herself on the spectrum. “I was at a workshop at a synagogue where they were trying to get us to come up with a better set of Ten Commandments than God’s,” she said. “My first was ‘Honor diversity.’” Singer and the American journalist Harvey Blume were thinking along parallel lines, and though she first used the word, he was the first to publish it, in 1998. “We both noticed that psychotherapy was waning and neurology was on the rise,” Singer said. “I was interested in the liberatory activist aspects of it—to do for people who were neurologically different what feminism and gay rights had done for their constituencies.” The movement accelerated with the broadening of the spectrum, and with increased communication among autistic people. “The Internet,” Singer said, “is a prosthetic device for people who can’t socialize without it.” For anyone challenged by language and social rules, a communication system that does not operate in real time is a godsend.
Camille Clark, who blogged for some years as Autism Diva, is diagnosed with Asperger syndrome, has been an important voice for neurodiversity, and is mother to an adult child with autism and spina bifida. “Autistic children love their parents,” she said. “You may have to learn to see how your child expresses affection and not take it personally if your child doesn’t show affection as typical children do. Deaf children may never speak the words ‘I love you,’ and deaf parents may never hear those words, but that doesn’t mean that deaf children don’t love their parents. For many Asperger syndrome and autistic people, just being in the presence of others is as much work as it is for a normally social NT [neurotypical] person to host a big party.” Many autistic people find eye contact unsettling; Kathleen Seidel, founder of Neurodiversity.com, said that she learned to avert her own gaze as a means of respecting her son’s needs. He, in turn, knew that physical contact had value to her and would occasionally give her a hug.
Clark feels that the concept of neurodiversity extends well beyond autism. “People with bipolar, schizophrenia, dyslexia, Tourette’s, and so forth ought to ‘subscribe’ to it,” she wrote to me. “Parents of autistic kids should be reasonable about what they can or can’t do, and they shouldn’t expect that their kid is ever going to be ‘normal.’ Autistic people are valuable as they are. They don’t have value only if they can be transformed into less obviously autistic people.” Jim Sinclair wrote, “The ways we relate are different. Push for the things your expectations tell you are normal, and you’ll find frustration, disappointment, resentment, maybe even rage and hatred. Approach respectfully, without preconceptions, and with openness to learning new things, and you’ll find a world you could never have imagined.” One activist commented to me that the attempts to “cure” autistic people are less like a cure for cancer than a cure for left-handedness.
Many neurodiversity activists fear that in the event of a genetic test, selective abortion would result in “genocide.” “I don’t want to get old and know that there will be no more people like me being born,” said Gareth Nelson, a man with Asperger syndrome who cofounded the website Aspies For Freedom. As with most of the conditions in this book, the abortion question is emblematic of the tension between identity and illness models. Ne’eman said, “We have never said that autism does not represent a disability, but that it doesn’t represent a disease. Give autistic individuals the educational opportunities and the opportunities to prosper and do well on our own terms.” Seidel said, “I have never ruled out the possibility that genetic research might yield helpful therapies for problems often experienced by autistic people. I’m all for the development of antagonists that might, for example, correct impairments in oral-motor function or serotonin metabolism, alleviate chronic anxiety, reduce a tendency to overstimulation, or decrease aggression. But I am primarily concerned about how to make life positive for the people on the autism spectrum who are here now, a group that happens to include my own child.”
Some parents of severely autistic children dismiss the articulate self-advocates as not really being autistic. There’s a central irony here. The increased rate of diagnosis is crucial to the claim that there is an epidemic—critical in lobbying for resources for research. But the higher-functioning people whose inclusion has brought up the numbers are often the ones who advocate against some of that research. Roy Richard Grinker, husband of Joyce Chung and author of Unstrange Minds, a book arguing that there is no epidemic, said, “At both ends of that spectrum, there’s an antiscience perspective. The neurodiversity people are furious that the scientists want to cure autism; the antivaccine people are furious that the scientists won’t do the studies they know should be done. Their premises are so different that any true dialogue is impossible. They’re unable to speak with each other because they have such different epistemological and philosophical foundations.”
Thomas Insel said, “This is the most polarized, fragmented community I know of. I think those kids have something seriously wrong with them. And when you start to argue that they just need to be accepted for who they are, you’re selling them and yourself terribly short. I don’t think we would do that with most cancers, or with infectious diseases. I sure hope we don’t do it for people who have a brain disorder like this. Most parents want their kids to live the fullest life possible, and that’s not possible when you’re not toilet-trained. And it’s not possible when you don’t have any language.”
“Please don’t write about them,” Lenny Schafer, editor of the Schafer Autism Report, said to me when I mentioned neurodiversity. “They’re a handful of noisy people who get a lot of media attention. They’re trivializing what autism really is. It’s like stealing money from the tin cup of a blind man when you say that it’s not an illness; you are getting the people who should be making political and social change to think that it’s not a problem. You are slowing down funding for research.” Other critics are even more vehement. John Best, parent of a child with autism, is author of the Hating Autism blog. One recent post showed a monkey engaged in autofellatio labeled “A neurodiverse nitwit ponders the vaccine trial.” The antineurodiversity, antigenetics Age of Autism blog featured a Thanksgiving card with a photoshopped image of Alison Singer, Thomas Insel, and others who don’t support the vaccine hypothesis eating a baby for their holiday meal.
Seidel referred to Insel’s assertion that autism “takes away the soul of the child” as a “histrionic and stigmatizing assertion.” She explained, “I don’t believe that he has ever cited any specific examples of parents whose ‘overacceptance’ has led them to neglect their children’s medical needs, or to deprive their children of an appropriate education, or to allow their children to descend into a state of self-indulgent incontinence, or to prevent their children from learning to communicate as best they can, or to stymie research into the causes and treatment of specific problems associated with autism. People such as Lenny Schafer set up this straw man saying, ‘Oh, the neurodiversity people just want to let autistic kids rot in the corner and never have anything that will help them.’ That’s bullshit. No parent in their right mind would let their kid rot in a corner.”
On the other side, Kit Weintraub, who has two children with autism
, wrote, “The fact that my children have an abnormality of development does not mean that I do not love my children for who they are. As with any other condition that would threaten their future and their happiness, I do as much as I can to help them be as functional and as normal as possible. And no, ‘normal’ to me does not mean ‘a cookie-cutter robot-child, trained to do my will.’ It means: ‘able, like most people without autism, to lead an independent, purpose-filled life—able to speak, able to communicate, able to form and keep relationships.’”
Some autistic people resent the perception that the activists who celebrate aspects of autism are speaking on their behalf. Jonathan Mitchell, an autistic man who wars with the neurodiversity movement on his blog, said, “The neurodiverse reach a vulnerable audience as many persons on the spectrum have been disaffected from society. Autistic people feel worthless and have low self-esteem and neurodiversity provides a tempting escape valve. The same is true for parents of sometimes severely autistic children who want to see their offspring as something other than deficient or broken.” Of course, the broader disability rights movement can be intolerant of science; Judy Singer said, “I fell out with the disability rights movement because they were so sociologically oriented; they were almost the same as creationists in their hatred of biology.” Members of the neurodiversity movement, though, do not in most instances deny biology; the presence of the prefix neuro makes it clear that biology is part of the argument. What they probe is the meaning of that biology.
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