Much of the antipathy results from divergent ideas of love. Many people who champion ABA or support the vaccine hypothesis believe that families who don’t accept their views are consigning their children to ruin. Many neurodiversity activists think that ABA is dehumanizing and the vaccine hypothesis is insulting. Clark has argued that ABA is suitable only for animals. Seidel believes that the parents who describe their autistic children as vaccine victims are disparaging their own progeny: “I am very concerned about the long-term, deep psychological impact on my child of the proliferation of the erroneous concept that people on the autism spectrum are poisoned. It’s scientifically incorrect and symbolically offensive.”
It’s naïve to criticize some autism activists for being autistic—idiosyncratic, single-minded, detail-oriented, not predisposed to imagine how listeners might respond to their words, and reluctant to compromise on a position unless offered a rational, intellectually supportable reason to do so. These qualities make autistic people somewhat less persuasive activists than they might wish, activism being in general helped considerably by charm. It’s harder to account for the aggression of the antineurodiversity movement. Schafer complains that neurodiversity activists “see us as being less than loving, as evil, and that’s just not who we are.” Yet it is the antineurodiversity people who, on the Evidence of Harm discussion list on Yahoo!, have accused their opponents of being “lazy,” “vaccine barbarians,” “cheap whores,” “motivated only by a paycheck,” and “high-minded Fascist germ freaks” disseminating “malicious public relations hyperbole.”
Sarah Spence, a pediatric neurologist who worked at the NIMH, said, “When we mitigate some of the underlying symptoms for people with severe autism, they do seem happier. As a clinician, you don’t feel that they love being ‘in their world.’ They want to break out. We’d like to accommodate the politics of neurodiversity, but science and clinical support have to go before politics.” Simon Baron-Cohen said, “Autism is both a disability and a difference. We need to find ways of alleviating the disability while respecting and valuing the difference.”
The attempt to dictate black-and-white policy about a spectrum condition is inherently flawed. Some people are frustrated by not being able to communicate well, and some seem not to mind; others accept that speech is difficult or impossible for them and communicate with keyboards and other assistive technologies; others yet, by careful observation, develop enough skills to get by. Some people are shattered by their social deficits, and others are largely uninterested in friendship, and others still make friends in their own way. Some people are devastated by their autism, some are proud of their autism, and some simply accept it as a fact of their life. There is social conditioning here: those who are regularly disparaged are less likely to feel good about themselves than those who receive supportive messages. But there is also a question of personality. Some autistic people are optimistic and buoyant, and some are withdrawn and depressed; autism coincides with the full personality range to be found in the neurotypical population.
Steven Hyman said, “Severity, of course, matters. A certain amount is your life goals and whether you can achieve them, and whether you’re experiencing distress and disability as a result of how you think and feel or whether you are happy with the way you are.” Insel said, “For those who are most disabled, the neurodiversity approach is threatening. On the other end of the spectrum, it will help people to accept themselves in the same way it encourages us to accept their uniqueness. What I’m hearing from some part of that community is that if you accept us for who we are, it also means that you’ll help us to become everything we can be.” Jennifer Franklin, mother of Anna, spoke with passion about such manifestos. “If Anna Livia were an adult who wanted to wear diapers and not be potty-trained, I’m down with anything. I’d like nothing more than for her to develop the kind of consciousness that would allow her to join the neurodiversity movement. If Anna got to the point where she could tell a therapist, ‘My mom is a bitch for putting me through this,’ I would feel like I did my job.”
Grandin argues that both the autistic person and the society have to make accommodation. She described the suffering of people who couldn’t communicate, had toileting challenges, and were injuring themselves regularly. “It would be nice if you could prevent the most severe forms of nonverbal autism,” she said. “But if you got rid of all the autism genetics, you’d get rid of scientists, musicians, mathematicians, and all you’d have left is dried-up bureaucrats. I see a picture in my mind of the cavemen talking around the campfire, and off in the corner, there’s the Aspie guy, and he’s chipping the first stone spear, figuring out how to tie it to a stick, cutting some animal sinews to do it. Social people don’t make technology.”
In a rebuttal of the suggestion that only those with few of the problems experienced by severely impaired autistic people are active in the neurodiversity community, however, the three webmasters of autistics.org issued a statement affirming that none of them is fully toilet-trained, and that one has no speech. “We flap, finger-flick, rock, twist, rub, clap, bounce, squeal, hum, scream, hiss and tic,” they wrote, asserting that such behaviors do not impede their happiness. In a video called In My Language, the neurodiversity activist Amanda Baggs described her perspective. Baggs has repetitive behaviors and no speech. “The way I think and respond to things looks and feels so different from standard concepts that some people do not consider it thought at all,” she says. “It is only when I type something in your language that you refer to me as having communication. People like me are officially described as mysterious and puzzling, rather than anyone admitting that it is themselves who are confused. Only when the many shapes of personhood are recognized will justice and human rights be possible.”
Jane Meyerding, who is diagnosed with Asperger syndrome and works at the University of Washington, wrote, “If people on the autism spectrum all ‘came out’ and worked towards increasing institutional flexibility to the point where our ‘special needs’ could be accommodated, the world would be a much more comfortable, less alienating place for everyone else as well. Such a world would be one where it would be as normal for children to have different learning styles as it is to have different colors and textures of hair. Where everyone would ‘have an accent.’” Joyce Chung described how her daughter, when “struggling over something she can’t quite articulate,” finally explained, “I think that’s because of my autism, Mama.” Would such a statement have been possible twenty years ago, and is the capacity for such self-accepting self-awareness a hallmark of maturity, liberation, even of triumph over the illness? “When people pity me for my daughter, I don’t understand the sentiment,” Roy Richard Grinker wrote. “Autism is less a disease to be hidden than a disability to be accommodated; it is less a stigma, reflecting badly on her family, than a variation of human existence.”
Kate Movius, mother of an autistic child, wrote, “Nothing yet has yielded a ‘eureka!’ moment for Aidan, unveiled some ideal child beneath the autism. Instead it is I who have been revealed, rebuilt, and given a new way of not just seeing Aidan for who he is, but of seeing myself.” Kathleen Seidel said, “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 does not trivialize the challenges of people who have 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. God manifests all possibilities, and this is one of the possibilities in our world. It’s a part of the human condition—or conditions, as the case may be.”
For the Deaf, medicine and activism are both galloping; for autistic people, both are trudging. Unlike deafness, autism has not been established as a culture in the eyes of even the liberal outside world. There is no formal language of autism to be recognized by linguists. There is no university with a long history of educating autistic people (unless one counts MIT). Instituti
ons parallel to those that subtend the Deaf claim to culture—Deaf theater, Deaf social habits, Deaf clubs—are not in place for autistics. The complexity of the science means that autism has time before medical progress trumps identity politics, but the Deaf model should make it clear to the neurodiversity crowd that they are in a race, in which their primary advantage is the other side’s tortoiselike pace. The autistic have on their side as well, however, the very real achievements of autistic people; retrospective diagnosis, albeit shaky science, suggests that Mozart, Einstein, Hans Christian Andersen, Thomas Jefferson, Isaac Newton, and a great many other visionaries would now be diagnosed on the spectrum. Describe a world without Helen Keller and most people wouldn’t miss her so much; describe a world without those particular geniuses, and everyone would be impoverished.
• • •
Bill Davis grew up in the Bronx, found his way into street gangs, and then graduated into organized crime. One day in 1979, a twenty-year-old would-be model walked into the nightclub he was managing. “She took a carnation out of a vase, put it in my lapel, and said, ‘You’re with me.’ We’ve been together ever since,” he said. After ten years, Bill and Jae moved to Lancaster, Pennsylvania, where their daughter, Jessie, was born. Five years later, their son, Christopher, followed. Jae stayed home with the children; Bill tended bar. At two, Chris stopped talking. By two and a half, he was rocking back and forth in a corner. Jae recognized that something was seriously wrong, and though she had no driver’s license, she announced one morning that she was driving Chris to Philadelphia to visit the Seashore House, a children’s hospital. She didn’t get a satisfactory answer, so two days later she said, “I’m going to Kennedy Krieger in Baltimore, and if that doesn’t work, we’re heading down to Haddonfield, New Jersey, to the Bancroft School.” Bill said, “You can’t drive around without a license.” The next week, she passed the test. “It turned out those places were the top in the country, but when and how did she figure that out?” Bill said. “And learn traffic laws at the same time?”
Chris didn’t sleep. He flapped his hands. He injured himself. He smeared himself with feces and flung it at his parents. He bit himself. He gouged at his eyes. He stared at the ceiling fan for hours on end. Jae had intuited that Chris would need infinite patience, and a progressive approach to things he found difficult, including intimacy itself. She and Bill broke everything into small tasks. “It was like, ‘Can I just touch you?’ ‘Oh, thank you so much. You’re great,’” Bill said. “He wouldn’t walk to the end of the block. So I would take him half a block and say, ‘What a great walk!’”
Chris had difficulty understanding cause and effect. He liked the motion of the car and screamed every time it stopped for a red light. Jae made red and green cards, and whenever the car approached a red light, she would show him the red one, and when it was time to go, she would show him the green. Once he understood the correlation, the screaming stopped. Jae gathered that he could absorb visual information, and she came up with a system of flash cards and symbols. “I was always watching what he saw,” Jae said. She had become interested in the work of Vincent Carbone, a behavior analyst, so she drove to Penn State and cornered him in his office. When he said, “Lady, I’ve got to go,” she said, “You don’t understand. I’m not letting you out of your office until you agree to help me.” After resisting for an hour, he told her she could join his next course. She stayed for a week and over the next few years developed several useful variations on his methodology. Carbone became so interested in these modifications that he sent a team up to Lancaster to observe her work with Chris. When Chris was six, Jae started taking in other autistic children. She found that one nonverbal boy liked clocks, so she bought him clocks and praised his interest. One day, he suddenly said to himself, “Good job, Juan.” It was the beginning of speech.
Jae recruited interns at Franklin and Marshall College and Rutgers University to help implement her techniques, tutoring and directing them in their work at the house. She set up cameras in Chris’s room and filmed the students so that she could correct their errors. She brought them to conferences and training programs. She wrote recommendation letters for them as they applied to grad school. By the time Chris was grown, Jae had trained more than forty interns; as other families in the area became aware of her work, she placed interns with them, as well.
Jae refused to believe that if Chris wasn’t speaking at five, he would never do so. By the time he was seven, Chris had begun to produce words; at ten, he could speak in short sentences. Chris learned to match pictures of the American presidents to their names, and Jae made numerical games so that Chris could learn math and how to count money. When I first saw Chris’s room, it was overflowing with learning materials: the beads and marbles he was using to learn to count were falling out of shoe bags; a cabinet held some five hundred homemade flash cards; musical instruments were everywhere; shelves upon shelves held bowls of everything from coins to plastic Sesame Street monsters. In addition, perhaps four hundred videotapes were piled around the room, crammed into shelves, wedged underneath and next to things, an Alexandrian library of cassettes.
When a new intern started, Jae would say, “Here’s two hundred dollars. You’re going to come into the next room, where we’ve hidden something. And you’ll try and guess what it is and where it is.” The person would come into a darkened room, and all the other interns would be screaming and clicking and making nonsensical remarks. The new intern would get more and more frustrated and would finally say, “I don’t understand what you’re doing! What do you want?” And Jae would say, “Come on, find it, and I’ll give you two hundred dollars!” When the person finally walked out, Jae would explain, “That’s what life is like for autistic children.”
Bill took Jae’s devotion as a challenge and took over negotiating with the state to pay for treatment. “The local schools people had been confronted by emotional parents who’d say, ‘My son needs forty hours of therapy,’ and they’d say, ‘Sorry—you lose,’” Bill recalled. “I would say, ‘Now, in Ethridge vs. Collins . . .’ They hated me. But I grew up in the heartland of Irish gangs in New York. I certainly wasn’t afraid of a schoolteacher in Lancaster.” If it could be established that what Bill and Jae were doing at home was more appropriate for Chris than what the school district was offering, the district had to underwrite the program. Bill came in with an annual budget: what materials cost; what workshops cost; what the interns cost. Meanwhile, the development of therapies had become a family project. Chris’s sister, Jessie, would take two of some instrument—a triangle, say—play one under the table, and ask Chris to play the same one over it; Jae explained the mechanism of that training to Jessie. When the first district psychologist came to review the family’s requests, he asked eight-year-old Jessie, “What are you doing?” She said, “Collecting sound discrimination data.” The psychologist said to the district committee, “The Davises know more than I do. Just give them what they want.”
Still, the Davises, who had no health insurance, had a lot to pay for on their own. Chris had gymnastics, speech classes, hospital assessments, and consultations with a variety of doctors who did not take Medicaid. “I was working four bartending jobs, bringing home sometimes twenty-five hundred dollars a week,” Bill said. “But, I swear to God, we couldn’t pay our rent. When things got really bad, I’d hold a bar fund-raiser: I’d solicit a baseball from the Phillies; I went to the Flyers and got hockey sticks. I’d sell it all at the bar and raise six thousand dollars at a clip.”
Like many autistic people, Chris has intestinal issues. Going to the bathroom can be painful for him, and he tends to hold on for as long as possible. “So his movements build up, and then movements explode behind movements,” Bill said. “He’ll say, ‘Bath,’ and he’ll hug me. I clean him and disinfect the room. My God, this is filthy. It’s stacked with old movies, and he’s stepping on them, and he just peed over there. It’s horrible. But it’s what works.” The place felt at once squalid and love-
imbued. Bill told me that for Jae, who had had a harsh childhood, the chance to raise her children in a perfect home had been a cherished dream. “For her to let her house go—it was a real decision,” he said.
When Chris was nine, the Davises decided that it was time for him to enter the school system. The school district agreed to let Jae train his teachers. The one who would be in charge of his education came to their home the summer before Chris was to matriculate. “She was open and very willing to learn and had kindness to her. I knew I could work with her,” Jae said. That autumn, Chris attended school in a classroom with two other boys, the teacher Jae had trained, and four assistant teachers.
Soon after Chris started school, Jae began to say she was tired. “She would get up at six a.m., go to bed at three a.m.,” Bill said. “Always writing; always on the Internet; always calling; always traveling. So I was surprised when she started saying, ‘Could you just take him?’” She finally went to a doctor and found that, at age forty-five, she had a malignant cervical tumor the size of a grapefruit that had metastasized to her lungs and spine; one of her kidneys had shut down; she had suffered a minor heart attack; and she had lost enough blood through internal bleeding to need an emergency five-hour transfusion.
When I met Jae, she had been given a few months to live. A nurse came to the house to administer the chemotherapy Jae hoped would eke out a little more time. Even without hair, and somewhat emaciated, she was beautiful, and she had a gentleness that contrasted with Bill’s machismo. She had insisted that I visit despite her condition. “I’m so lucky,” she said to me, “that Chris started school. He’s ready to do things on his own. Bill will make sure he gets what he needs. I always saw what he saw, but Bill feels what he feels. I’ve done what I came to do.” The closed-circuit television system she’d set up to monitor Chris’s teachers was still in place, so she could watch what happened in his room upstairs without rising. “It’s just been such a strange experience for me, everything going on at once, my dying, Chris going to school,” Jae said. “I worry more about my daughter and husband than about Chris. Honestly, he’s just a happy kid. But it’s hard to get him to conceptualize emotions, so I’m struggling to help him understand that I won’t be around.”
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