maandag 26 mei 2008

The Autism Rights Movement

A new wave of activists wants to celebrate atypical brain function as a positive identity, not a disability. Opponents call them dangerously deluded.

By Andrew Solomon
Published May 25, 2008

Ari Ne'eman (Photo: Henry Leutwyler)

On December 1, the NYU Child Study Center came out with advertisements in the form of ransom notes. One said, “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, director of the center, hoped the ads would propel undiagnosed children toward competent professionals. But they repelled and upset a subset of the very population they were meant to assist: people with autism-spectrum disorders.

Autism activists spearheaded a huge protest. The chief organizer was 20-year-old Ari Ne’eman, who has an Asperger’s (autism without speech delay) diagnosis. In a memo to his Autistic Self Advocacy Network, he denounced the campaign as relying on “the oldest and most offensive disability stereotypes to frighten parents.”

While people with diagnoses of autism and Asperger’s have difficulty with social interaction, he added, “we are not incapable of it and can succeed and thrive on our own terms when supported, accepted, and included for who we are.” Stereotypes of autism were self-fulfilling, he argued. As he told me later, autistic adults were abandoned to “rot in institutions because of the perception that there is no way they can live in the community.”

Ne’eman started a letter-writing campaign and recruited support from the major American disability groups. The campaign rapidly escalated and was soon reported in the New York Times, The Wall Street Journal, and the Washington Post. This was startling for several reasons. Autistic people are held to be bad at social functioning—and therefore incapable of the organization such protests entail. Autism advocates are an entirely new category: The whole idea didn’t really exist five years ago.

Moreover, rather than advocating for a cure, or seeking research into the cause of the much-publicized “autism epidemic,” these activists argued that society needed to change, not autistic people. Koplewicz was stunned. “People kept misinterpreting the ads, and there was a contagion to that. And there was no way we could seem to explain ourselves,” he said. Less than three weeks after they appeared, the ads were pulled. It was a signal triumph for the neurodiversity movement, the self-chosen name for the autism-rights brigade.

The first person to articulate the autism-rights position, Jim Sinclair, has produced only a few page-long essays. In his seminal invective, “Don’t Mourn for Us,” from 1993, he wrote, “It is not possible to separate the autism from the person. Therefore, when parents say, ‘I wish my child did not 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. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.”

The term neurodiversity was put forward by Judy Singer, an Australian whose mother and daughter have Asperger’s and who is on the spectrum herself, and was first published by the American writer Harvey Blume. “I was interested in the liberatory, activist aspects of it—to do for neurologically different people what feminism and gay rights had done for their constituencies,” Singer said.

Singer, Blume, and Sinclair, voices in the wilderness in the nineties, are now part of a thriving culture: There are Websites and T-shirts, and slang like NT, or “neurotypical” (a playful slur for the non-autistic), Aspies, and auties. The neurodiverse present regularly at autism conferences.

Some of the first wave of activists are parents of autistic children, but more recently, autistic adults have been advocating on their own behalf. The Internet has made the climate even more hospitable to an autism-rights position, allowing activists to locate one another and communicate at their own pace. The Web, Singer said, “is a prosthetic device for people who can’t socialize without it.”

These activists argue that autism is not an illness but an alternative way of being. The preferred terminology among disability activists is to speak of a “person with deafness” rather than a “deaf person,” or a “person with dwarfism” rather than a dwarf. But Sinclair has said that “person-first” terminology denies the centrality of autism and has compared “person with autism” to describing a man as a “person with maleness.”

I’ve heard these arguments before and been swayed by them, both in the case of the deaf community and on the matter of mental illness. But to me, autism was different. Whereas deafness creates relationships, autism seems to cut people off from one another. I took the much-publicized agony of parents of autistic children to be a marker for the despair of their children.

Autism’s deficits—for the head-banging, nonverbal children and for the socially inept, obsessive ones—seemed simply too bleak to celebrate, and I did not see how any wishful rhetoric could alter that fact.

Kathleen Seidel (left) is the owner and operator of the Website She has a child with Asperger’s, had a father with similar qualities, and exhibits spectrum characteristics herself.

“Honestly, I always feel kind of like an oddball whenever I’m in any kind of group situation, so the apple doesn’t fall far from the tree,” she says, laughing. “There’s a kind of polish that I’ll never have, and that’s just built into the wiring.”

Her personal obsession is disentangling conflicts of interest in lawsuits brought by parents who believe that vaccines caused their children’s autism. (From the neurodiversity perspective, the escalating vogue for arguing that vaccines cause autism is not just incorrect but offensive, implying as it does that their condition is a side effect of poisoning.)

But this is just a piece of Seidel’s larger project of exalting autistic people. For many parents, an autism diagnosis is a crossing into hell. Seidel sees it otherwise. “I think of diagnosis as an aid to pattern recognition in our lives,” she says. “We could make sense out of things that had been inexplicable to us; we felt validated. I encountered the word neurodiversity, and it just sang to me. I thought, What a beautiful word, that encompasses the reality that God has many different ways to build a brain.”

I invited Seidel to stay with me in New York for a weekend so that she could introduce me to the debates around neurodiversity, and she attacked the task with the elegant force of a great lawyer defending her favorite client before the Supreme Court. She has the activist’s urgency, the scholar’s rigor, a broad-ranging sensibility, and a great laugh. She trained as a librarian, wrote a Sufi cookbook, and celebrated her marriage, in 1982, at the Mudd Club.

Tall, angular, a little geeky, attractive, with a penchant for big hats and sunglasses, she has at first that air, common to people on the spectrum, of finding social interaction pointlessly exhausting. Once on her topic, though, she lights up like a neon sign. We sat up late every night, cross-legged on the floor, reviewing case after case, and she told them with the punch of Dickens describing Jarndyce v. Jarndyce.

She is staunchly unabashed by her many formidable opponents; she describes herself as a “1,000 percenter.” A recent profile of her in the Concord, New Hampshire, Monitor, her local paper, quoted a professor who works on autism calling her “the Erin Brockovich of autism-spectrum disorders.” She told me, “Juries and judges hear sad stories, and it’s totally logical that people’s hearts will lead the way. But hearts leading the way don’t always lead to justice.”

Seidel has had occasion recently to live this insight. She was served an incredibly far-reaching subpoena on March 26, demanding all her Website’s records and an extraordinary range of other documents including canceled checks, tax returns, Lexis/Nexis records, e-mails, information pertaining to contact with “religious groups (Muslim or otherwise),” and on and on. The subpoena was issued by the lawyer in a vaccine case within hours of her posting an article critical of his integrity.

It appeared to be a craven attempt to intimidate Seidel, who responded with Aspie meticulousness, moving that the subpoena be quashed on grounds of sanctionable abuse. Seidel became a cause célèbre, and on April 21, a judge ruled in her favor. The subpoena intended to silence her views instead served to broadcast them—testament to both her wit and her tormentors’ foolishness.

“So I have another question to ask you,” I said cautiously.
“Ask me a question. Kick me in the ass,” she said, with typical feistiness.
“When you realized that your child had Asperger’s, did you want to do anything about it?” I asked. “Did you want to ameliorate it? Did you want to celebrate it?”
It had been a challenge, she acknowledged, to accept that her child did not want to be touched, would avoid eye contact. But by the time she heard the diagnosis, she’d moved past that stage. “I wanted to figure out what my child needed,” Seidel said. “I wanted to figure out what my child needed to thrive, for fulfillment.”

Under Seidel’s tutelage, I began to understand that there were two basic principles that I did not yet grasp. The first is the variety of experience that gets lumped under the words autism spectrum, which is not a simple range from milder to more severe symptoms but rather a three-dimensional universe of behaviors as challenging to define as the notion of human personality itself.

The other is that some people who lack what consensus deems essential to happiness are happy nonetheless. Much as the Grinch cannot believe that Christmas can come without packages, boxes, or bags, so I thought happiness could not come without what looks to the rest of us like intimacy. I was wrong.

The neurodiversity activists include both people on the spectrum and their parents; their opponents likewise include both groups, with a heavy concentration of parents. There are in reality three sides in this debate: those who believe autism is caused by environmental toxins (especially vaccines) and should be cured by addressing those pollutants; those who believe it is genetic and should be addressed through the genome; and the neurodiverse, who believe that it is genetic and should be left alone.

These camps are blatantly hostile to one another. Gerald Fischbach, the scientific director of the Simons Foundation, one of the largest private funders of autism research, says, “I’ve never seen an advocacy community as intense and demanding. The mercuries get livid when people talk about genetics. The geneticists get furious when people talk about environmental toxins. And these activists get angry at both.”

To complicate things further, it may be deceptive to talk about autism as a single illness at all. According to Steven Hyman, former head of the National Institute of Mental Health (NIMH) and now provost of Harvard, the illness is likely to “turn out to be a family of related brain problems that won’t respond to the same treatments.” In the seventies, the rate of autism was said to be about one in 10,000; it is now one in 150. But what do these numbers mean?

If an autism epidemic is sweeping the country, then huge resources to address it are appropriate—to treat it, to find a cause, to figure out how to acknowledge this new population. If we are now describing as autism both what was once misdiagnosed as mental retardation and what was once accepted as eccentricity, there is no public-health crisis.

There are contradictions even within the different camps. While vaccine activists tend to dismiss the articulate neurodiversity people as “not really autistic,” merely “quirky” individuals hijacking the fates of those more seriously affected, they fight for research by pointing to swelling autism rates that include just such people.

I had dinner with Ari Ne’eman at Blue Hill in New York. He is not without social graces, but you can feel the effort in them, traces of being “the only kid in third grade who brought the newspaper to school in the morning.” He said, “I like to say that neurotypical social interaction is a second language. It’s not as if we can’t learn it. It’s just that it doesn’t necessarily come easily to us.”

When Ne’eman was in high school, his extraordinary intellectual skills and his striking social deficits meant that he was considered both gifted and disabled. “People think of those as opposites, but that’s not the case. As a public-relations point, it’s nice to point to people like Vernon Smith, a guy with Asperger’s who won the Nobel Prize in economics, or [music critic] Tim Page, who has Asperger’s and won a Pulitzer.

But it would be a mistake to say that people carry worth and should have their differences respected only if they can deliver some sort of special talent.” Ne’eman started speaking out about autism rights when he was 16 and in school in New Jersey; before long, he was appointed by the governor to the New Jersey Special Education Review Commission, and became chair for the Public Policy Committee for the New Jersey Coalition for Inclusive Education.

He is attending the University of Maryland, Baltimore County; he jokes, “In my spare time, I’m a full-time student.” His parents, he says, “were some of my strongest, strongest allies. They told me I could grow up to be whatever I wanted to be. Early on it was a paleontologist, then it was a physicist. I briefly had an obsession with the New York Yankees, and I still don’t understand what the attraction was there. And then it became politics and the general social sciences, and that sort of stuck.”

I asked Ne’eman about the initiative from some in the neurodiversity movement to have Asperger’s, like homosexuality, removed from the illness list in the DSM. Did he agree with that approach?

“There is a wide diversity on the autism spectrum,” he said, with measured sobriety. He nodded and then added, a touch autobiographically, a phrase that many in the autism community use: “When you know a person on the spectrum, you know one person on the spectrum.”

One of the clichés of autism is emotional deadness.

Spending time with Seidel and Ne’eman, I felt the opposite. They both use the tonalities of logic, but the logic of the heart. They are a little weird, but then most intelligent people are weird deep down, and there was something about the frankness with which Seidel and Ne’eman and other activists I met displayed their fascinations that was refreshing, even relaxing; in fact, I felt with them that my proud knack for observing social niceties was also a tissue of pointless lies.

Please don’t write about them,” Lenny Schafer, editor of the prominent Schafer Autism Report, adoptive father of a severely autistic child, and a vaccine activist, said. “It’s a handful of noisy people who get a lot of media attention but do not represent a broad swath of the autism community. Best for them to be ignored. They want to redefine autism as something nice that Einstein and Bill Gates had. 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.”

Mark Blaxill, a leading vaccine parent, called them “a nuisance” and expressed the common concern that they were not in fact autistic. “There’s a militancy associated with celebration, pride, and sense of identity—all that’s fine and wonderful,” he said. “They’re also just a little sad. What kind of person would need to attack parents trying to help their kids?”

John Best, parent of a child with autism and author of the Hating Autism blog, puts it most harshly: “It’s time to put an end to celebrating having brain damage.”

To me, it seemed clear that everyone in this debate expends a lot of energy defeating straw men. While those seeking a cure for autism do not (as their opponents in the neurodiversity movement claim) want to obliterate a vibrant subculture of atypical thinkers, the neurodiversity activists also do not oppose helping kids—though they do take exception to some treatments used on children.

Researching this article, I spent a lot of time being talked at by people on both sides, one more doctrinaire than the next. Not since my early days reporting from the Soviet Union had I found myself so bullied about what I should and shouldn’t be mentioning.

Roy Richard Grinker, author of a pellucid book called Unstrange Minds that deals with his daughter’s autism, pointed out that the vaccine activists and their neurodiversity opponents do share one thing, a deep suspicion of the motives of scientists: While the neurodiversity people are furious that scientists want to cure autism, anti-vaccine parents rage that they are studying the wrong things. “I’ve compared it to the standoff between intelligent design and evolutionary biology, that both use the language of science but with premises so different that dialogue is impossible,” Grinker said.

Some activists oppose autism research, fearing it will lead to eugenics. Their fear is legitimate: how would parents react if they could identify an autistic fetus?
The idea that vaccines cause autism got a boost in March, when the Centers for Disease Control settled with the parents of 9-year-old Hannah Poling on the grounds that her autismlike symptoms were caused by vaccines that aggravated an underlying mitochondrial disorder.

This was widely misinterpreted to mean that the vaccine side had won, a false conclusion that drives neurodiversity activists crazy. “I protest the wholesale characterization of people on the autism spectrum as toxic. It’s scientifically incorrect and symbolically offensive,” Seidel says.

The most important research from the other side is being done by Michael Wigler at Cold Spring Harbor Laboratory, who considers autism “entirely genetic,” although he emphasizes that these genetics are hugely complex, involving as many as 200 genes, and that how they translate into behaviors is not yet understood. Even research like Wigler’s is sometimes opposed by those touting neurodiversity, who fear that it will lead to eugenics.

This fear is legitimate: Ninety percent of pregnancies that test positive for Down syndrome are terminated. How would parents react if they could identify an autistic fetus? “There are serious problems with taxpayer and well-meaning charitable funds going toward that kind of research,” Ne’eman says. “We need an awareness that not every dollar given toward autism causes is helpful to autistic people.”

I was uncomfortable with this anti-scientific position but was nonetheless moved by the activists’ glorious vision of a world that would err on the side of acceptance rather than pathologize difference. When I spoke to parents of children with extreme autism, however, the neurodiversity perspective could feel entirely beside the point.

Jennifer Franklin Nash was living happily in New York when her 2-year-old daughter, Anna Livia, was diagnosed. She decided the best treatment would be a rigorous ABA (applied behavior analysis) program that could deal with Anna Livia’s violent tantrums. Since there were no such programs in New York, she applied out of the city.
When Anna Livia was accepted at a school in New Jersey, Nash and her daughter moved there; Jenny’s husband, a surgical resident at Sloan-Kettering, could not leave. Jenny now lives in a community where she knows no one. ABA has to be practiced not only one-on-one throughout a long school day but also all the time at home, and so every day, Jenny waits for Anna Livia to come home at 4 P.M. and then works with her nonstop until 9 p.m., reinforcing appropriate speech and actions, tallying rewards for everything done right and demerits for everything done wrong.

When Anna Livia goes to bed, Jenny soothes herself watching movies. She wakes at 7 a.m. to make breakfast for her daughter and does more ABA until the school bus comes. Exhausted, she climbs back into bed so that she will be bright enough to cope when 4 p.m. rolls around.

A Brown graduate with an M.F.A. from Columbia, a gifted poet published in The Paris Review, she has the accusations of the neurodiversity people ringing in her ears. ABA has, however, had significant positive effects. Anna Livia no longer engages in self-injurious behavior and has few tantrums. Her vocabulary, though tiny for her age, has increased.

“I’d like nothing more than for her to develop the kind of consciousness that would allow her to join the neurodiversity movement,” Nash said. “If she decides to communicate without speech, that will be her choice, and I would love for her to be capable of such choices. It’s my fantasy that someday my daughter will go to her therapist to say what a terrible mother I was forcing her to do all this ABA. When that happens, I’ll know I succeeded.”

Parents like Nash are willing to try anything that will work—and potential therapies abound, from dietary treatments to remedial vaccine therapies, most prominently chelation, a process for removing metals from the body that is risky and unproved. Even the most enthusiastic advocates for pharmacological treatments (including a Lupron protocol that is basically chemical castration) admit that they are highly experimental. The neurodiversity community sees them as hazardous medical experiments on disabled children.

Many neurodiversity people also take exception to ABA. Camille Clark, who blogs as the Autism Diva, told me that she objected to the treatment’s goal, to render the autistic child “indistinguishable from his peers.” ABA, she says, “may make a very neurotic simulacrum of a normal kid who can pull off a normal act in some narrow situations, but there is no way to train a kid to be ‘normal’ inside using dog/dolphin/pigeon training methods.”

Clark argues that her opponents misrepresent this perspective as an insistence that autistic children be left to “rot.” (Schafer, for one, has called them “pro-fester.”) But Clark protests that to lobby against harmful therapies is the opposite of advocating the abandonment of vulnerable children. “A loving parent wouldn’t expect a kid with no hands to practically kill himself trying to master the piano, and parents of autistic kids shouldn’t expect that their kid is ever going to be ‘normal.’ Period.”

In many ways, the question is whether it’s the autistic people or their parents who are unhappy and need fixing. Often enough, the neurodiversity activists argue correctly, the parents of autistic children conflate their unhappiness with their children’s.

Parents are in a tough place figuring out how to respond. What should be treated, and what left alone? Much of the debate hinges on divergent ideas of love. The vaccine people believe families who don’t accept their hypothesis are neglecting their children; the neurodiverse people believe parents who describe their autistic children as diseased are insulting them.

Thomas Insel, director of the NIMH, told me, “I’m at a point where I think that the parents probably know more than the scientists about autism, and I’ve heard families say, ‘I wouldn’t trade my child’s autism for anything; it’s been the best experience of my life.’ I admire that, but even so, if you could get rid of autism, I would say, go for it. There are plenty of other challenges in life that will make people miserable; let’s at least have people face them without having to wear diapers.”

I was interested by how much everyone talked to me about the cure. There are thousands of Web pages devoted to advocating for a cure, arguing against a cure, discussing when and how a cure should be administered. The fact that all of this is mired in the hypothetical does not dissuade either side.

Alex Plank, who founded the Wrong Planet Website, which has over 19,000 members, says, “Since no cure exists, I don’t have to be opposed or for it. The thing now is to deal with the autistic people who are already on this planet. The organizations with the best connections were founded by parents of people with autism, who aren’t going to have the same priorities as autistic people, especially if those parents’ idea of success is to make their kid the same as themselves.”

Seidel concurs. “I am not opposed to seeking a treatment that might be useful to people in the future who want it, but I am concerned about how to make life positive for the people on the autistic spectrum who are here now, a group that happens to include my own child.”

But of course some autistic people do want to be cured, now. Jonathan Mitchell, an autistic who blogs against neurodiversity, says, “Most persons with an autism-spectrum disorder have never expressed their opinions on someone’s blog and never will. The neurodiverse often reach a vulnerable audience, as many persons on the spectrum have low self-esteem. Neurodiversity provides a tempting escape valve.”

Cattle-handling-equipment designer Temple Grandin, author of the autism classic Thinking in Pictures, has long been the public voice of autism. Neurodiversity has dawned since she began grappling with autistic pride, and though she has enabled it, she is too late to be its beneficiary.

Grandin argues that both the autistic person and society have to make accommodations. “I won’t do all the neurotypicals want, but you have to go halfway,” she says. “We had manners pounded into us. We had fancy dinners at my grandmother’s, and I was expected to sit at Granny’s table for twenty minutes and I couldn’t monopolize the conversation.

You can’t degeekify the geeks, but you can be a polite geek. Autism is a continuum from genius to extremely handicapped. If you got rid of all the autism genetics, you’d get rid of scientists, musicians, mathematicians. Some guy with high-functioning Asperger’s developed the first stone spear; it wasn’t developed by the social ones yakking around the campfire. The problem is, you talk to parents with a low-functioning kid, who’ve got a teenager who still goes to the bathroom in his pants and who’s biting himself all the time.

This guy destroys the house, and he’s not typing, no matter what keyboards you make available. His life is miserable. It would be nice if you could prevent the most severe forms of nonverbal autism.”

Grandin’s desire to find a middle ground resonated with me. If there is one thing that everyone in the autism world seems to recognize, it is the pervasive confusion about what qualifies as “sick,” and what qualifies as “odd.” Some of the geeks, in Grandin’s parlance, are autistic; some are just geeky.

Some people with no language make social connections; others are highly verbal but unable to understand social rules; others are paralyzed by anxiety, or have hyperacute sensory responses that cause them to withdraw. Some kids have full use of language, and others have echolalia (meaningless repetition of overheard phrases), and yet others have language for basic communication but no more; Alison Singer, an executive vice-president of Autism Speaks, told me that her daughter had language at last—“which means that she says, ‘I want juice,’ not that she says, ‘I feel that you’re not understanding how my mind works.’”

“Some guy with high-functioning Asperger’s developed the first stone spear; it wasn’t developed by those social ones yakking around the campfire.”
It’s also possible that what have been understood as emotional deficits are in fact something slightly different: communication deficits or sensory overload. “The perception of people like us as lacking emotion is wholly inaccurate,” Ne’eman says. “It’s the failure of society to understand the communication styles of autistics.”

For many Asperger’s-syndrome and autistic people, Autism Diva Clark points out, “just being in the presence of others is as much work as it is for a normally social person to host a big party.” She told me that parents needed to learn not to take it personally if their child didn’t show affection in typical ways: While deaf children may never say ‘I love you,’ she argued, that doesn’t mean they don’t feel love.

Seidel agreed with this, in terms of her own relationship with her kid, who Seidel said did indeed have an affectionate side, and when it began to blossom, her child would make tea for her—that was a form of love. “Why should I force eye contact or hugs on someone for whom that’s just noise?” she asks.

The irony, of course, is that empathy—the very quality at issue in defining autism—can be hard to come by among these warring factions. There is intolerance of neurodiversity activists, but there is also intolerance from them, and doing these interviews sometimes felt to me like watching Wimbledon; it made my neck hurt.

In the film Autism Every Day, Alison Singer describes going to New York to look at schools for autistic children, being overwhelmed by the hopeless dreariness of the classrooms, and fantasizing, as she drove back over the George Washington Bridge, about driving off it with her daughter.

The neurodiversity people have had a picnic with this; Ne’eman drew a connection between these comments and the killing of autistic children, saying that Autism Speaks was “morally complicit in these murders.” It’s disrespectful toward Singer and Jenny Nash and other mothers like them to suggest that their struggles are anything less than passionately loving.

Autistic children seem frequently, by virtue of the extra care they require, to inspire a desperate, enormous welter of adoration, fantastically powerful even when it is striated with frustration and sorrow. The love predicated on hope is as profound as that predicated on acceptance. The balance is infinitely difficult. “When your child is 12 years old and not toilet-trained, or is head-banging at age 15, how much of your acceptance is wise and how much is preventing recovery?” NIMH director Insel asks.

The complicating factor here is that personality and illness are not so easy to disentangle, making absolute measures of disability almost impossible. Hyman, the former head of NIMH, says, “Some people with Asperger’s can’t figure out why they’re having so much trouble. Others wonder why anyone considers it a clinical condition.”

Some autistic people are shattered by their social deficits, while others are largely uninterested in friendship. Those who are told throughout their lives that they are bizarre and aberrant are less likely to feel good about who they are than those who receive supportive messages. It is not possible to separate the person and the autism and to say that certain things are the “real” person while others are the “disease,” but it is possible to see that there are buoyant and depressed autistic people—the full personality range of the neurotypical population.

Regardless of personality, regardless of social handicaps, some autistics have abilities that elude their non-autistic counterparts—spatial thinking, for example—which challenge the disability model, as with Ne’eman’s conundrum of being both gifted and disabled. “My kid has an ability to focus intently,” Seidel said.

“Things can be difficult if the teacher wants you to shift every fifteen minutes. But that’s not stupidity. A Cray supercomputer is used for intense computing that involves the manipulation of massive data. One of the most powerful computers made, it runs so hot it has to be kept in a liquid cooling bath. Is the Cray defective because it requires this kind of nurturing environment for its functioning? No! It kicks ass! That’s what my kid is like. Needs support, needs attention, and is amazing.”
Is this wanting to eat and have your cake? It strikes me that in post-ADA America, it is taboo to say that having disabilities is frequently unpleasant not because of a tyrannical social structure that constructs disability as a negative but because the broad spectrum of normative abilities are in fact useful, while their absence is, for want of a better word, disabling.

As Koplewicz, the head of the organization that put out the anti-autism ads, puts it, “If you’re short, you stand on your toes; if you’re a little person, you qualify for accommodation. They can’t have it both ways.” The question is how to afford people the maximum dignity and also give them the maximum ability to function in this majority-defined world.

Can neurodiversity bring about change efficiently enough to supersede the tyranny of typical neurology? Kathleen Seidel says, “The word incurable is quite devastating-sounding, but you can also look at it as being that autism is durable. Looking at this jewel through different facets, I do not trivialize the challenges of people who face tremendous obstacles; I’m trying to look at the whole picture, including the beautiful part of it. Autism is as much a part of our humanity as the capacity to dream. This is one of the possibilities in our world. It’s a part of the human condition—or conditions, as the case may be.”

I came to this assignment with my own smattering of neurodiversities. I was severely dyslexic as a child and suffered acute depression as an adult. My mother devoted a great chunk of her life to eviscerating the dyslexia, but I am almost incapable of writing by hand and wonder whether I could have been a writer in a time before keyboards. I take seven medications to keep my depression at bay; I have been an outspoken critic of people who glamorize the condition.

And yet, while I would never have chosen to have dyslexia and would love to be rid of it, I cannot help wondering whether my passion for written expression came in part from the unending praise heaped on me every time I sounded out a word. In my book The Noonday Demon, I wrote about how grappling with depression had given me strength and depth of character and said that while major depression is a horrifying illness that should be erased from human experience, the mood spectrum that includes extreme sadness is essential to our capacity for love. I would not be myself without those diversities.

I started off highly skeptical of the neurodiversity movement, but it turns out that autism is to cognition as depression is to mood and that the same layers of nuance apply to it. Severe autism is a ghastly affliction that should be cured; milder autism may be part of a precious spectrum we wouldn’t want to compromise.

As with depression, there can be a tyranny of people focused on a cure who are insensitive to the meaning some people find in their struggles, and there can, likewise, be insensitivity on the part of meaning-finders to the acute suffering experienced by others. The one crucial difference is that depression is now largely treatable (though some illness is intractable) and autism is largely untreatable (despite the partial success of behavioral programs).

It is unproductive to rail against the incurable; if you can learn to love it, that’s your best chance of happiness. For some people, the love is self-evident; for others, it is acquired through struggle; others cannot do more than pretend to it. Though neurodiversity activists can get in the way of science and sometimes wrap themselves up in self-important, specious arguments, they also light the way to such love—a model of social acceptance and self-acceptance that has the capacity to redeem whole lives.

Geen opmerkingen: