Far From The Tree - Far From the Tree Part 8
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Far From the Tree Part 8

Fred Volkmar, head of the Child Study Center at Yale, tells of one of his patients, a twenty-five-year-old math genius who had thrived largely because of his mother's exquisite care, who said to her, "Why do you need a mother? Why do you have to have a family? I don't understand." His mother later said, "He thinks of everything very intellectually. But he doesn't understand how it makes me feel." The British psychoanalyst Juliet Mitchell observed, "In extreme cases, the violence of one's own nonexistence makes one gasp-it's not that you're eradicated; you're not even there to be eradicated. There is no trace of psychic equivalence, in which your recognition of another correlates with that other's recognition of you."

Irish mythology holds that a child may be whisked away at birth, and a fairy changeling left in its place. The changeling will look just like the child, but will have no heart; it will want to be left alone, will hold on to a piece of wood that recalls its fairy home, and instead of speaking, it will croak and hum. If the mother tries to caress or love it, it will laugh and spit and take revenge with bizarre acts. The only solution is to throw it on a bonfire. Martin Luther wrote, "Such a changeling child is only a piece of flesh, a massa carnis, massa carnis, because it has no soul." Walter O. Spitzer, a professor of epidemiology at McGill, who has testified before Congress about autism, seemed to refer back to such mythology because it has no soul." Walter O. Spitzer, a professor of epidemiology at McGill, who has testified before Congress about autism, seemed to refer back to such mythology in 2001 when he described autistic people as having "a dead soul in a live body." Autism advocates have understandably taken exception to such analogies; the prominent autism advocate Amanda Baggs said, "Being seen in light of the ghost of who you were expected to be is a kind of emotional violence for many disabled people." Neurodiversity activists such as Baggs might argue that the child who seems "lost" in a different world may be content in that world. Of course, this position is put forward by people who are able to communicate, and since one of autism's core traits is lack of empathy, autistic self-advocates' statements on behalf of others can be suspect. Self-advocates do, however, accurately observe that parents choose treatments on the basis of guesswork about what their children must want. Parents may work hard to help their children emerge from autism and fail to do so; they may, equally, help their children lose traits of autism, then find out that their children hated being "treated" and were happier the way they were. in 2001 when he described autistic people as having "a dead soul in a live body." Autism advocates have understandably taken exception to such analogies; the prominent autism advocate Amanda Baggs said, "Being seen in light of the ghost of who you were expected to be is a kind of emotional violence for many disabled people." Neurodiversity activists such as Baggs might argue that the child who seems "lost" in a different world may be content in that world. Of course, this position is put forward by people who are able to communicate, and since one of autism's core traits is lack of empathy, autistic self-advocates' statements on behalf of others can be suspect. Self-advocates do, however, accurately observe that parents choose treatments on the basis of guesswork about what their children must want. Parents may work hard to help their children emerge from autism and fail to do so; they may, equally, help their children lose traits of autism, then find out that their children hated being "treated" and were happier the way they were.

Nancy Corgi, mother of two autistic children, has not had a warm relationship with fate. She has been utterly responsible in her handling of her offspring, but she has kept her own cool at a considerable price. "Having advocated and fought for these kids now for nineteen years," she said, "my entire personality has changed. I'm quick to pick a fight; I'm argumentative. You don't cross me. I have to do what I have to do, and I'm going to get what I want. I never was like this at all." I'd met so many families who tried to look on the bright side of horrible situations that I found something bracing in Nancy's brash assertions of misery and disgust, her ability to say that if she'd known what kind of children she was going to have, she wouldn't have had children.

Nancy's mother noticed some oddness in eighteen-month-old Fiona, and one day at the hairdresser's she got into a conversation with a woman who had an autistic son. He sounded like her granddaughter. She called Nancy and said, "I made an appointment with this pediatric neurologist, and it would be really nice if you just took Fiona in." Nancy, eighteen weeks pregnant with her second child, decided to humor her mother. The doctor took one look at Fiona and said, "She's PDD." Nancy was shocked. "It wasn't something that was going to be done by next week, fixed," she recalled. Fiona has classic autistic traits, is completely disengaged from other human beings, and showed no signs of developing speech on her own. She hates to be touched and wouldn't keep her clothes on. "All my food is locked up in the basement or it would be thrown on the walls," Nancy said. "Also, she could set the house on fire." At thirty-two months, Fiona started going to early intervention at the University of Massachusetts. "About three o'clock, I would start to physically shake, knowing she would be back at three thirty-ish," Nancy said. "I didn't want her coming home. When I got child-care help, I would lock myself in my room. I just wanted to sit at the bottom of the dark closet, no sound, no light, nobody." intervention at the University of Massachusetts. "About three o'clock, I would start to physically shake, knowing she would be back at three thirty-ish," Nancy said. "I didn't want her coming home. When I got child-care help, I would lock myself in my room. I just wanted to sit at the bottom of the dark closet, no sound, no light, nobody."

The summer after Nancy's second child, Luke, turned two, Nancy and her sister were sitting on the beach at Cape Cod, and Nancy's sister said, "You have another problem." Nancy was astounded. "My son seemed totally normal, after dealing with my daughter," she recalled. Unlike her sister, however, she had no experience of normal children. "All of a sudden my whole life was all about testing and testing and testing," Nancy said. Her husband, Marcus, is an accountant. "He deals with the IRS every day. He's used to stubborn, ridiculous bureaucracy. He has the patience and know-how to deal with insurance companies, claims, the school system's financial stuff. That was his part, my part being that I got the kids to deal with. How many years did we drive up and down the Mass Pike for evaluations at Boston Children's? My kids are seventeen and nineteen, and I'm still doing it."

Though both children are diagnosed on the spectrum, their respective autisms manifest differently. When Fiona was eight, she jumped out a second-floor window because she wanted to make mashed potatoes and knew that if she found the front-door key in the garage, she could get to the potatoes and cook them. With coaching, Fiona eventually developed language, but her syntax and affect are odd. "If I am having a conversation with someone while my daughter is at the table, she talks to herself," Nancy said. "I go to symphony, I go to opera, I do theater with girlfriends. I'll buy Fiona a ticket because she loves to dress up, and she loves music. She mumbles and she's weird, with no idea how to relate to other people, but she doesn't interrupt or bother you." Luke was a sweet-natured child, but adolescence hit him hard. He had been on clomipramine since kindergarten, but was switched to Risperdal and Paxil at puberty when his symptoms escalated. "He is basically anxiety-ridden and really not too swift," Nancy said. "He only talks about what interests him: videos, movies, and animals. Zero common sense. If a four-year-old calls him a bad word, he might knock him across the room. He's angry. Two minutes later he'll be cuddly. Really crummy." Fiona was mainstreamed with an aide from first through eighth grade. Luke's deficits of intelligence and his disruptive behavior disqualified him from mainstreaming.

Nancy tends to express rage, but also feels despair, and when her children were young, that despair was closer to the surface. "I would get up at three in the morning and realize again that it's not just a bad dream. Then I would look at Marcus in the morning and say, 'How dare you sleep last night?' What we have left, as us, is much less than when we got married." Marcus worked long days-longer, in Nancy's view, than was necessary. Her mother, who lived a few streets away, asked Nancy how it was going, but seldom saw her. Her mother-in-law disengaged completely. "Nobody ever rolled up their sleeves to help," Nancy said. "Nobody liked my kids. They weren't likable, but if somebody had acted like they were, maybe that would have helped." dream. Then I would look at Marcus in the morning and say, 'How dare you sleep last night?' What we have left, as us, is much less than when we got married." Marcus worked long days-longer, in Nancy's view, than was necessary. Her mother, who lived a few streets away, asked Nancy how it was going, but seldom saw her. Her mother-in-law disengaged completely. "Nobody ever rolled up their sleeves to help," Nancy said. "Nobody liked my kids. They weren't likable, but if somebody had acted like they were, maybe that would have helped."

Nancy and Marcus were on a supplementary form of insurance called Mass Health, which helped pay for a part-time caretaker for the children. Then Mass Health went through a budget shakedown and eliminated the Corgis from the system. In the end, Nancy and Marcus paid for help themselves, but the sums of money were large. Nancy decided to enroll Fiona in a residential school at fourteen; Nancy and Marcus fought tooth and nail to get her in. "My husband broke down and cried and said, 'I just don't know what more we can do to show you what she needs.' That was one of two times I ever saw him cry." They enrolled Luke at fifteen. "You are talking about two kids who need as much supervision as a toddler," Nancy said. "So they are in school 281 days a year."

Luke loves pretty girls, but his inept attentions usually meet with rejection. Nancy has to keep explaining away these painful experiences for him. He is also uncontrolled and frighteningly strong. When Nancy and Marcus went to a wedding and left the kids with a sitter who had cared for them before, Luke picked up the sitter's two-year-old son and hurled him across the room. "He hit my mother last year," Nancy said. "He told my father to shut up." The Corgis belong to a beach club on Cape Cod, where Nancy has been going since childhood. The year after I met them, Nancy was told that Luke had made lewd gestures to a girl by the pool and was no longer welcome-though it was in fact merely an inept attempt to strike up a conversation. Nancy drafted a letter explaining that Luke's self-control was undermined by his brain's biology. It made no difference, and Luke was not allowed back. "We're used to living in the leper colony, aren't we?" Nancy said.

In spite of her persistent outrage, Nancy can speak of her children with tenderness. "My kids are very affectionate and cuddly and sweet," she said. "Fiona wasn't so much when she was little. But now we'll sit on the couch and I will sort of pet her and hold her. I used to tuck her into bed and give her a kiss and tell her I loved her. I would say, 'Say, "I love you."' She would repeat with me, 'I love you.' Eventually she knew what it meant and would say it to me on her own. Once, I fell asleep on the couch. She got a blanket and tucked me in and gave me a kiss. Fiona is functioning way beyond what we ever expected. People say, 'You can pat yourself on the back,' and we do." But Nancy worried constantly that someone would take advantage of Fiona and was trying to get both children sterilized. "The best we can hope is that we never have grandchildren," Nancy said sadly. "My husband will sometimes say, 'Would you marry me again?' I say, 'Yeah, but not with the kids.' Had we known what we know now, we wouldn't have done it. Do I love my kids? Yes. Will I do everything for them? Yes. I have them and I do this and I love them. I wouldn't do it again. I think anybody who tells you they would is lying." a kiss. Fiona is functioning way beyond what we ever expected. People say, 'You can pat yourself on the back,' and we do." But Nancy worried constantly that someone would take advantage of Fiona and was trying to get both children sterilized. "The best we can hope is that we never have grandchildren," Nancy said sadly. "My husband will sometimes say, 'Would you marry me again?' I say, 'Yeah, but not with the kids.' Had we known what we know now, we wouldn't have done it. Do I love my kids? Yes. Will I do everything for them? Yes. I have them and I do this and I love them. I wouldn't do it again. I think anybody who tells you they would is lying."

Some nonverbal people with autism appear to have no language, either receptive or expressive. Some have trouble with control over the oral-facial musculature involved in producing speech and may be helped by keyboards on which they can type. Some lack access to the unconscious process through which our thoughts emerge in a string of words. Some have intellectual disabilities so great that they do not develop linguistic capacities. The relationship between language and intellectual disability is confusing; no one really knows what may be hidden behind speechlessness. Alison Tepper Singer, former vice president of Autism Speaks and founder and president of the Autism Science Foundation, told me that her eleven-year-old 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.'"

Micki Bresnahan spoke of the challenge of decoding her son's communications. Although as a child he had very little language, he would repeatedly say "robot" whenever he cried. She would buy him toy robots and brought him to movies about robots, yet he continued to cry out "robot" in his distress. After two years and several therapists, Micki figured out that her son thought he had been made into a robot during back surgery for kyphosis, when metal rods were placed along his spine. "He couldn't express it, and I couldn't figure it out," she said. "He tested in the normal intelligence range. But he's very low-functioning. If he can't dress himself and he is a genius, what does that mean? That means he can't dress himself." Her son has limited speech and only occasional access to it. "He has to get upset to talk," she said. "It's neurological. He gets more and more agitated, and it is as if he's doing it so that he can talk. It's sadder now than when he was little. He's not going to get married, have kids, become a grandfather, buy a house. All the things that a person does in an adult life give it texture. All the way out to the horizon, there's nothing." Another mother said of her thirteen-year-old son, "If he were deaf and needed to sign, I'd learn Sign. But there's no way for me to learn his language because he doesn't know it himself." learn Sign. But there's no way for me to learn his language because he doesn't know it himself."

In 2008, a Canadian girl with autism named Carly Fleischmann, having never used language, began typing at age thirteen. Her parents didn't even know that she could read or understand their speech. "We were stunned," her father said. "We realized inside was an articulate, intelligent, emotive person whom we had never met. Even professionals labeled her as moderately to severely cognitively impaired." Among the first things she wrote was, "If I could tell people one thing about autism, it would be that I don't want to be this way but I am. So don't be mad. Be understanding." Later she wrote, "It is hard to be autistic because no one understands me. People assume I am dumb because I can't talk or I act differently. I think people get scared with things that look or seem different than them." When a father wrote to Carly to ask what his autistic child would want him to know, Carly wrote back, "I think he would want you to know that he knows more than you think he does." Asked by her parents about her unexpected emergence, she said, "I think behavior therapy helped me. I believe that it allows me to sort my thoughts. Unfortunately it can't make me normal. Believing helped. Then a miracle happened, you saw me type. Then you helped me forget that I'm autistic."

Harry and Laura Slatkin live in an elegant house on the Upper East Side of Manhattan. Harry is a fragrance executive and a gregarious man-about-town, a designer of scents for Elton John, Oprah Winfrey, and others. Laura runs a successful scented-candle business. The Slatkins' affluence has helped them to obtain services for which other families must battle, and they have emerged as prominent autism activists and philanthropists. The Slatkins had twins in 1999, and while Alexandra appeared to develop normally, David was, at fourteen months, given to running up and down the hallway and giggling in what struck his mother as a peculiar way. After a couple of useless medical referrals, he was eventually given a diagnosis of pervasive developmental delay. Doctors often use this diagnosis as a way of breaking the news gently, and Laura was heartened by it. "That didn't sound so awful," she recalled, "because delay delay to me meant it was still coming and would just take time." But then she called up another doctor and learned that David might in fact be autistic. "That was a dagger through my heart that changed our world forever." to me meant it was still coming and would just take time." But then she called up another doctor and learned that David might in fact be autistic. "That was a dagger through my heart that changed our world forever."

Early intervention sent therapists to work with David at home, and Laura began reading obsessively. "We were in such high gear, we didn't know what was coming at us," Laura said. "One night, I was writing my thoughts in a journal. Would he ever talk? Go to school? Make friends? Get married? What's going to happen to David? I just burst into tears, and Harry said, 'Laura, stop crying, because that's not going to help David. It is not going to do anything for us. You have to take all your energy and do something constructive.' And the next morning, we got to work." thoughts in a journal. Would he ever talk? Go to school? Make friends? Get married? What's going to happen to David? I just burst into tears, and Harry said, 'Laura, stop crying, because that's not going to help David. It is not going to do anything for us. You have to take all your energy and do something constructive.' And the next morning, we got to work."

They established the New York Center for Autism to provide education, community outreach, and medical research. They put to use every good connection they had. After discovering that no schools in New York provided ABA, they met with the city's schools chancellor and told him they wanted to start one that would; because they believed in universal access, they wanted it to be part of the public school system. The New York Center for Autism Charter School was established in Harlem in the same building as PS 50, a regular public school, in 2005, its headmaster and faculty handpicked by the Slatkins and another autism mom, Ilene Lanier. The city funds the school at a cost of $81,000 per pupil per year. There is one teacher for each student. Cheerfully decorated and filled with light, it is an oasis in the public school system. The headmaster, Jamie Pagliaro, started a program for eighth graders at PS 50 to work with the kids at the charter school, and now more of these kids are clamoring to participate than the charter school can handle. More than one thousand families are languishing on the charter school's waiting list.

Laura and Harry donated half a million dollars to Hunter College to establish a program that teaches educators how to work with autistic children. The Slatkins hope that with enough trained faculty, there could be a network of similar schools, so that every autistic child in New York would have the option of attending such a program. "The difference between a lousy and a superior education is the difference between being able to live independently or not," Laura said. Additionally, the Slatkins have worked with Cornell and Columbia Universities to set up a state-of-the-art center to provide top-level early intervention and ongoing clinical care for autistic people. They have also established a think tank called Transitioning to Adulthood to figure out how to improve residential facilities for adults with autism, and to provide appropriate vocational training. have worked with Cornell and Columbia Universities to set up a state-of-the-art center to provide top-level early intervention and ongoing clinical care for autistic people. They have also established a think tank called Transitioning to Adulthood to figure out how to improve residential facilities for adults with autism, and to provide appropriate vocational training.

While the Slatkins were setting up these programs, they were also helping David. "The first year is the year of hope," Laura said, "though you don't know it at the time. That is the year when you can still imagine that your child is one of the least affected and that he will emerge." At the end of that year, Laura said to David's therapist, "So I just wanted to know where David stands with respect to the other children that you have worked with." He replied, "I would say that your son is probably the most severely affected child I've ever seen." Laura explained to me, "He didn't realize that I didn't know that. That was the day I lost hope, the worst day of my life. I thought we were making progress, I thought that maybe he would talk, that maybe he would go to regular school, that I did everything right. I got him help early, I got the best doctors in the world, I got the best educational people, I got forty hours of treatment a week, which was the most anyone had ever gotten. Given a great educational program, most children can make amazing gains; we see it every day at the charter school. But David wasn't going to be one of them. I just folded. My old life was over for me. From that day on, I had to use the words severely affected by autism severely affected by autism. I had to wrap my arms around this future and make a new peace with it."

The Slatkins tried every form of intervention. In one, the therapist told them to do whatever David liked to do. "David used to love to run around our dining room table," Laura said. "So she said, 'Run around with him.' They ask you to enter their world. I'd like to get them out of their world." The time that followed was bleak. David has never developed any language, and his comprehension appears to be virtually nil. He cannot communicate with signs or by using the picture-exchange methods that work for many autistic children. When Laura and Ilene founded the charter school, they assumed that their sons would go there, but the public school system required that students be admitted via lottery, and neither child was chosen. For Ilene, this was a significant loss, but the Slatkins knew that David could get little out of even the best school in the world.

David would wake every night at two thirty and jump around his room. "One night, he was bouncing off the walls, and I turned to my husband and said, 'There are places for children like David, and we need to consider them because we can't live like this,'" Laura recalled. "Harry responded so violently. He said, 'Don't you ever say that ever again; my son's not going anywhere.' I figured that one day Harry was going to get to the point where he couldn't take this anymore. So I told him, 'I'm going to explore.'" David was never still. "He's on Risperdal, which should cause heavy sedation," Laura said. "It doesn't affect his hyperactivity at all. I think it's helped to reduce his aggressive behaviors, but he's been on it for so long that I don't know what he'd be like if he didn't take it. We tried to take him off once, and it was like taking someone off heroin. Harry suggested we get one of those darts that they shoot into a wild boar and just shoot him in the behind."

As David grew larger, he became increasingly violent and destructive. In the documentary Autism Every Day, Autism Every Day, Harry describes, tearfully, Harry describes, tearfully, putting locks on all the doors on their weekend house, "because we didn't want David possibly going into the pond. But there were times when you hoped he did, because you wouldn't want him to suffer like this all his life." David's twin sister reached the point at which she said, "I don't want to come home from school; I don't want to walk into that house; I can't listen to it anymore." Harry said, "We're talking about a little boy who was eating his own feces or smearing it on the walls, who would go six days without sleeping, who pinched Laura so hard she had to go to the doctor, who pulled out his sister's hair by the handful." putting locks on all the doors on their weekend house, "because we didn't want David possibly going into the pond. But there were times when you hoped he did, because you wouldn't want him to suffer like this all his life." David's twin sister reached the point at which she said, "I don't want to come home from school; I don't want to walk into that house; I can't listen to it anymore." Harry said, "We're talking about a little boy who was eating his own feces or smearing it on the walls, who would go six days without sleeping, who pinched Laura so hard she had to go to the doctor, who pulled out his sister's hair by the handful."

Laura began a serious search for a residential placement. "It's going to be hugely, hugely painful, but I know he's headed there," she said. "It's just a matter of when." Sitting in her living room just off Fifth Avenue, Laura described this inevitability with both equanimity and sorrow, her head bowed. "I make him breakfast and lunch every day," she said. "And I make him that breakfast with love. I worry about that institutional setting. Nobody's going to know that he loves his bacon crispy and that he likes his pasta with just a little butter, not a lot."

Activism can forestall self-examination, but Laura Slatkin chose activism clear-sightedly to displace some of her sadness. "I work on this school my son doesn't go to," she said, "and I sponsor research that probably won't help him, and I have a think tank to design institutions where he may never receive care, because there is so little I can do to help him, and it makes me feel better to know that at least I can make some families' hope come true, the same hope I once had, that never came true for us."

We have no way to describe autism except by symptoms so variable that some clinicians refer to the autisms the autisms. We don't know its cause or mechanism. The modifier idiopathic, idiopathic, often used to describe autism, is essentially an indication that it is currently inexplicable. Researchers have developed numerous hypotheses about a "core deficit" from which all other symptoms flow. One popular principle is often used to describe autism, is essentially an indication that it is currently inexplicable. Researchers have developed numerous hypotheses about a "core deficit" from which all other symptoms flow. One popular principle is mindblindness mindblindness, an inability to recognize how another person's thoughts differ from one's own. A child is shown a candy package and asked what he thinks it contains. He thinks it contains candy. It is opened and he is shown that it contains a pencil instead. He is then asked what another child will think when shown the closed package. Nonautistic children expect the other child to be duped just as they were. Autistic children expect the child to know the package has a pencil in it. A number of recent imaging studies have demonstrated that mirror neurons, usually activated when a person either performs or observes an action, fire in autistic subjects only when they themselves are doing something and remain mute when they are observing someone else. This fits with mind blindness. Uta Frith of University College, London, has theorized that people with autism lack the drive for central coherence that allows humans to organize and learn from outside information. Others speak of a shortfall in flexibility. Others yet have posited that the central issue for people with autism is attentional overarousal and underarousal. All these accounts may be true, but none particularly explains the others. when they are observing someone else. This fits with mind blindness. Uta Frith of University College, London, has theorized that people with autism lack the drive for central coherence that allows humans to organize and learn from outside information. Others speak of a shortfall in flexibility. Others yet have posited that the central issue for people with autism is attentional overarousal and underarousal. All these accounts may be true, but none particularly explains the others.

In his memoir, Send in the Idiots, Send in the Idiots, Kamran Nazeer, who has autism, writes, "The challenge for autistic individuals is that they are overwhelmed even by their own minds. Typically they notice more details than other people. I know someone who can sketch buildings in architectural detail, from memory-placing not just rooms but elevator shafts, corridors, stairwells-after walking around them only once." Another woman he describes could play a piece of music from start to finish after hearing it for the first time. "Simultaneously, the ability of autistic individuals to categorize or process this information is more limited," Nazeer writes. "With this combination of high input and low output, inevitably a sort of logjam occurs. Consequently, autistic individuals try to focus on simple tasks that don't involve other people." John Elder Robison, diagnosed with Asperger's, recalls, "Machines were never mean to me. They never tricked me, and they never hurt my feelings. I was in charge of the machines. I felt safe around them." Kamran Nazeer, who has autism, writes, "The challenge for autistic individuals is that they are overwhelmed even by their own minds. Typically they notice more details than other people. I know someone who can sketch buildings in architectural detail, from memory-placing not just rooms but elevator shafts, corridors, stairwells-after walking around them only once." Another woman he describes could play a piece of music from start to finish after hearing it for the first time. "Simultaneously, the ability of autistic individuals to categorize or process this information is more limited," Nazeer writes. "With this combination of high input and low output, inevitably a sort of logjam occurs. Consequently, autistic individuals try to focus on simple tasks that don't involve other people." John Elder Robison, diagnosed with Asperger's, recalls, "Machines were never mean to me. They never tricked me, and they never hurt my feelings. I was in charge of the machines. I felt safe around them."

Though brain imaging has done little to reveal the mechanisms of autism, it has revealed the organic substrates of some of these phenomena. A study conducted at Yale found that in adults with autism or Asperger's, the region of the brain activated during face processing corresponded to the region activated in nonautistic subjects during object processing. Autistic people with fixations, however, may recognize those in the area where most people register faces. So one autistic boy had the same region in his brain light up for his mother as for a teacup. But he was enthralled by Japanese Digimon characters, and when he saw those, the area where most of us process our intimate connections suddenly flashed on.

Bob and Sue Lehr did not intend to adopt a disabled child. However, in 1973, when Bob was working as a guest professor in Utah, the couple learned of a mixed-race child whom no one in the area wanted. They decided to make him part of their family, which already included one Caucasian biological son and one adopted mixed-race daughter. Utah required couples to wait a year from petitioning to finalizing adoption, but the Lehrs' attorney said they could bypass that system. Sue said to me, "We should have put together the clues."

After the family returned home to Tully, in upstate New York, it became clear that something was wrong with Ben. "He was a blob," Bob said. "We would pick him up, and he didn't tense up for the lift." The Lehrs called the Utah Division of Child and Family Services and requested Ben's medical records. After a few months without a response, the Lehrs had an attorney write to the agency; the agency offered to bring Ben back to Utah. "Excuse me?" Sue said. "I couldn't imagine just saying, 'Well, gee, my son is damaged; I'm going to send him back,' like he was a sweater." Their pediatrician put Ben through a battery of tests. He finally recommended that Sue and Ben just take their son home and love him. Bob was an experimental psychologist and continued to work in that field, but Ben's care was to become his primary concern. Sue, who had been a gym teacher, returned to Syracuse University to earn a PhD in special ed.

The local school didn't want Ben and made his life miserable, and the Lehrs sued the district. Sue told authorities, "You can't keep him out of your building because he is brown. Tell me where it says you can keep him out because he has autism." The work at school was modified for him, but he had to do it, though he had little language and couldn't initiate speech. Some people who cannot produce oral words can communicate in writing, and some who don't have the muscle control for handwriting type instead, and some who don't have even the control for typing use other methods. Ben learned facilitated communication facilitated communication, or FC, a system in which someone helped him to use a keyboard by giving his arms nondirected physical support as he typed. There has been great debate about whether what is expressed using FC is really the language of the disabled person or of the facilitator; Ben's parents are sure that he is controlling his FC utterances.

As he grew up, Ben would often smash his head on the floor, use knives to cut himself, put his head through windows. "His behaviors were a way of communicating," Sue said. "Not the best way, but other kids communicate using drugs or driving snowmobiles drunk." When Ben was a teenager, Bob and Sue took him to RadioShack, his favorite store. He panicked on the escalator, and at the bottom he sat down cross-legged and began smashing himself in the head with his hands and screaming as a crowd gathered. Sue always carried an FC keyboard, and when she took it out, Ben typed, Hit me. Hit me. "And I thought, 'Oh, yeah, in the middle of the mall with a security guard, and you're black and I'm white,'" Sue recalled. "And then he typed out, "And I thought, 'Oh, yeah, in the middle of the mall with a security guard, and you're black and I'm white,'" Sue recalled. "And then he typed out, Like a record player. Like a record player." Sue suddenly flashed on a stuck needle; she struck him on the edge of the shoulder with the heel of her hand and said, "Tilt." Ben stood up and they walked calmly on across the mall.

In high school, Ben began having horrendous behavior problems. "I didn't like his aide, Willie, an obese, slovenly guy who always wore sweatpants," Sue said. "But I thought maybe I was just being judgmental. Then he was arrested for raping his own three-year-old daughter. Meanwhile, Ben was typing out that Willie had been hurting him and gave enough details to his speech therapist that she had the principal call the cops. Willie would say, 'Ben's having a hard time, so we'll go up to the weight room and lift weights.' And that's where Willie was raping him, while this other guy would watch. So we brought Ben home for a while and nurtured him, to make sure he didn't think it was his fault." When he returned to school, Ben developed meaningful relationships with his classmates, assisted by a particularly well-attuned aide. In his senior year, he used FC to write a column for the school newspaper. He invited a nondisabled girl to the prom, and she accepted (somewhat to the chagrin of her boyfriend); at the prom, he was elected to the king's court. At graduation, when he walked down to get his diploma, the whole audience stood up. Both Sue and Bob began to cry as she described it. "Thousands of people at this graduation. And they all stood up and applauded for Ben."

I was struck by the Lehrs' early decision to help Ben but not to "fix" him. "His sister said to me, 'Do you ever wonder what it would be like if Ben were normal?'" Sue said. "And I said, 'Well, I think he's normal for himself.' Have I wished that he didn't have all of his behavior problems? Absolutely. Have I wished that he had better language? Absolutely." Much of what he types is Delphic. For a while he kept typing, And you can cry. And you can cry. No one ever understood what he meant. Another day he typed, No one ever understood what he meant. Another day he typed, I want to stop those, jerky feelings, jerky hurting. I get upset, then look stupid. I want to stop those, jerky feelings, jerky hurting. I get upset, then look stupid. Bob described going to conferences and being surrounded by parents desperate for a cure-"It's going to be all better next year, crap like that. We were avant-garde in saying, 'No. It's going to be better right now. Let's make it as good as possible for him.'" Bob described going to conferences and being surrounded by parents desperate for a cure-"It's going to be all better next year, crap like that. We were avant-garde in saying, 'No. It's going to be better right now. Let's make it as good as possible for him.'"

After high school, Bob and Sue gave Ben the down payment for a house eight miles from their own. His Social Security check covered his mortgage and most of his utility bills. He earned money by making wooden tables to sell at craft fairs. Someone was with him constantly, either a trained aide or a lodger who shared the house in exchange for caretaking. Because water is Ben's passion, the Lehrs found him places to swim and bought him a hot tub. A decade later, Sue's mother died, and the Lehrs took their inheritance and went on a three-month family camping trip to Europe. "Each person in the family got to pick one thing they wanted to do," Sue said. "Ben picked swimming in every body of water he could find. So he's been in the Mediterranean, he's been in the Aegean, he's been in pools and lakes and streams. We have a picture of him in Athens, sitting on the top of a stone wall, the highest point in Athens. He's got his little drumsticks and he's tapping on the stones and he's got a look of sheer joy on his face." been in the Aegean, he's been in pools and lakes and streams. We have a picture of him in Athens, sitting on the top of a stone wall, the highest point in Athens. He's got his little drumsticks and he's tapping on the stones and he's got a look of sheer joy on his face."

When they returned from Europe, Bob was diagnosed with Alzheimer's, which had advanced considerably by the time I interviewed him for this book. For two years, Bob didn't want anyone but Sue to know, but Ben would type out, Daddy's sick. Daddy's sick. Observing that Sue was upset, he'd type, Observing that Sue was upset, he'd type, Mommy is broken. Mommy is broken. Finally, Bob sat down and explained that Ben was right, Daddy is sick, but he wasn't going to die right away. In the face of this diagnosis, the Lehrs woke up anew to the profound effect Ben had had on them. "I absolutely handled the news differently than I would have if we hadn't had Ben," Bob said. Sue said, "I think I'd learned a lot from Ben about reading people, trying to understand what they're thinking or feeling that they can't articulate. About treating someone as a human being even when his thoughts and feelings are mixed up. How do we make you feel safe, loved, okay? I learned the way it works by having Ben. And so I had it ready when Bob needed it." Finally, Bob sat down and explained that Ben was right, Daddy is sick, but he wasn't going to die right away. In the face of this diagnosis, the Lehrs woke up anew to the profound effect Ben had had on them. "I absolutely handled the news differently than I would have if we hadn't had Ben," Bob said. Sue said, "I think I'd learned a lot from Ben about reading people, trying to understand what they're thinking or feeling that they can't articulate. About treating someone as a human being even when his thoughts and feelings are mixed up. How do we make you feel safe, loved, okay? I learned the way it works by having Ben. And so I had it ready when Bob needed it."

Autism is associated with underconnectivity between hemispheres and an overabundance of local connections; the neuronal pruning that helps the average brain avoid overload does not appear to occur in autism. Many autistic children are born with smaller heads than the norm, but by six to fourteen months, many have larger heads than the norm. The brains of autistic children are often enlarged by 10 or 15 percent, a condition that appears to resolve as the children grow. The human brain consists of grey matter, where thought is generated, and white matter, which conveys that thought from one area to another. In autism, inflammation has been observed in areas of the brain that produce white matter; too much is produced too soon, creating terrible noise, much like what you might get if every time you picked up your telephone, you heard not only the voice of the person you were calling, but also a hundred other voices all on the line at the same time. The fact that you and the other person were both speaking clearly would get lost in the cacophony. In autism, neurological losses have been observed also in the cerebellum, the cerebral cortex, and the limbic system. Autism genes may alter brain levels of neurotransmitters at crucial stages of development.

It seems likely that autism autism is a blanket term. Autistic behavior may prove to be a symptom of a variety of causes, much as epilepsy can be caused by a genetic defect in brain structure, a head injury, an is a blanket term. Autistic behavior may prove to be a symptom of a variety of causes, much as epilepsy can be caused by a genetic defect in brain structure, a head injury, an infection, a tumor, or a stroke; or as dementia may be the result of Alzheimer's, cerebrovascular degeneration, Huntington's, or Parkinson's. No single gene or consistent set of genes causes the syndrome, although many genes that have been identified are functionally connected to one another, forming a network in the brain. It is not yet clear whether autism-related genes always or sometimes require environmental triggers to become active, nor, if so, what the triggers may be. Researchers have studied many possible developmental influences: prenatal hormones; viruses such as rubella; environmental toxins such as plastics and insecticides; vaccines; metabolic imbalances; and drugs such as thalidomide and valproate. Autism may be genetic, determined by spontaneous new mutations or through inheritance; it is strongly correlated with paternal age, possibly because of germ line de novo mutations that occur spontaneously in the sperm of older fathers. In a recent study, the rate of autism increased fourfold when researchers compared fathers in their thirties to those in their twenties, and the situation appears to be more drastic for fathers in later stages of life. Researchers have also hypothesized that autism is caused by mother/child genetic incompatibilities that play out during gestation. Others have proposed a theory of infection, a tumor, or a stroke; or as dementia may be the result of Alzheimer's, cerebrovascular degeneration, Huntington's, or Parkinson's. No single gene or consistent set of genes causes the syndrome, although many genes that have been identified are functionally connected to one another, forming a network in the brain. It is not yet clear whether autism-related genes always or sometimes require environmental triggers to become active, nor, if so, what the triggers may be. Researchers have studied many possible developmental influences: prenatal hormones; viruses such as rubella; environmental toxins such as plastics and insecticides; vaccines; metabolic imbalances; and drugs such as thalidomide and valproate. Autism may be genetic, determined by spontaneous new mutations or through inheritance; it is strongly correlated with paternal age, possibly because of germ line de novo mutations that occur spontaneously in the sperm of older fathers. In a recent study, the rate of autism increased fourfold when researchers compared fathers in their thirties to those in their twenties, and the situation appears to be more drastic for fathers in later stages of life. Researchers have also hypothesized that autism is caused by mother/child genetic incompatibilities that play out during gestation. Others have proposed a theory of assortative mating, assortative mating, suggesting that people with particular personality types find one another more readily in our mobile, Internet-enabled era, so that two people with mildly autistic tendencies-"hypersystemizers"-produce children together in whom those traits are concentrated. suggesting that people with particular personality types find one another more readily in our mobile, Internet-enabled era, so that two people with mildly autistic tendencies-"hypersystemizers"-produce children together in whom those traits are concentrated.

If we knew what goes on in the brain during autism, it would help establish which genes are implicated. If we knew which genes were implicated, we might be able to figure out what is happening in the brain. If we have only fragmentary knowledge of each thing, both goals are elusive. Up to two hundred genes may be implicated in autism, and some evidence suggests that you need several to manifest the syndrome. Sometimes, epistatic, or modifier, genes influence the expression of primary genes; sometimes environmental factors influence the expression of these genes. The closer the relationship between genotype (what genes you have) and phenotype (what behavior or symptoms you manifest), the easier it is to discern. In autism, some people with a shared genotype don't share a phenotype, and some with a shared phenotype don't share a genotype. Genetic research has demonstrated "variable penetrance" in autism-that is, one can possess known risk genes and not be autistic, and conversely, one can be autistic without having any known risk genes.

If one identical twin has autism, the chances are 60 to 90 percent that the other twin will be autistic as well, though the second twin may have a much milder or a much more severe version of autism. This indicates a strong genetic basis for the disorder. While traits such as eye color or Down syndrome are always shared by identical twins, many other characteristics are not shared absolutely, and the correlation for autism is the highest for any cognitive disorder-higher than for schizophrenia, depression, or obsessive-compulsive disorder. may have a much milder or a much more severe version of autism. This indicates a strong genetic basis for the disorder. While traits such as eye color or Down syndrome are always shared by identical twins, many other characteristics are not shared absolutely, and the correlation for autism is the highest for any cognitive disorder-higher than for schizophrenia, depression, or obsessive-compulsive disorder.

If one fraternal (nonidentical) twin has autism, the chances are 20 to 30 percent that the other twin will have autism. Fraternal twins do not have identical genetics, but they do have near-identical environments. Nontwin siblings of children with autism are some twenty times as likely to have the condition as members of the general population. Even unaffected close relatives of people with autism are likely to have some subclinical social difficulties. All this suggests that there are strong genetic factors in autism, but that genes alone do not explain all instances of the condition.

A common disorder may be caused by a single anomalous gene. So anyone who has Huntington's disease, for example, has the aberrant Huntington's gene. Autism is the opposite of Huntington's in this regard. Hundreds of different genetic anomalies can predispose someone to autism. No individual rare gene variant rare gene variant occurs in very many people, but much of the population has a variant of some kind. The genome is full of hot spots, areas that mutate more easily and frequently than others. Some diseases-breast cancer, for example-are linked to a small number of specific gene mutations, each of which occurs on a particular stretch of a particular chromosome, and they are easily traced because women who have them frequently reproduce. Autism genetics are harder to map because there seem to be many rare gene variants associated with autism that are not usually inherited. They are sprinkled all over the genome. As Matthew State, codirector of Yale's Program on Neurogenetics, has said, "Saying you have found an autism linkage peak on the part of the genome you are studying is like saying you live near Starbucks. Who doesn't live near Starbucks?" occurs in very many people, but much of the population has a variant of some kind. The genome is full of hot spots, areas that mutate more easily and frequently than others. Some diseases-breast cancer, for example-are linked to a small number of specific gene mutations, each of which occurs on a particular stretch of a particular chromosome, and they are easily traced because women who have them frequently reproduce. Autism genetics are harder to map because there seem to be many rare gene variants associated with autism that are not usually inherited. They are sprinkled all over the genome. As Matthew State, codirector of Yale's Program on Neurogenetics, has said, "Saying you have found an autism linkage peak on the part of the genome you are studying is like saying you live near Starbucks. Who doesn't live near Starbucks?"

NIMH director Thomas Insel said, "It takes five thousand genes to grow a normal brain, and conceptually, any of them could go wrong and cause autism." According to Michael Wigler at Cold Spring Harbor Laboratory, no single mutation is associated with more than 1 percent of instances of autism, and many of the genes implicated have yet to be discerned. It's not clear whether the complex symptoms of autism arise from a number of separate genetic effects-compromising language separately from social behaviors, for example-or whether one genetic effect, brought about by multiple genes, cascades to various brain regions to generate the characteristics of the syndrome. Most genes associated with autism are pleiotropic, which means that they have multiple effects. Some of these effects are linked with conditions that often co-occur with autism, such as ADHD, epilepsy, and gastrointestinal disorders. Most demonstrate small effect sizes, which means that a gene may boost your chance of developing autism by 10 or 20 percent-not boost it tenfold, as would happen for many disease-risk alleles. genes associated with autism are pleiotropic, which means that they have multiple effects. Some of these effects are linked with conditions that often co-occur with autism, such as ADHD, epilepsy, and gastrointestinal disorders. Most demonstrate small effect sizes, which means that a gene may boost your chance of developing autism by 10 or 20 percent-not boost it tenfold, as would happen for many disease-risk alleles.

Many genetic diseases occur because a particular gene is abnormal in its structure. In some others, however, a gene is missing entirely; in yet others, there are extra copies of a gene. So let's consider the sentence "I am happy" as a stand-in for a sequence on the genome. The most frequent model for a disease would be for the sentence to come out as "I am harpy" or "I ag happy" or some other such disruption. In a rare case, though, it might come out as "I m hpy" or, alternatively, as "I amamamamamam happpppy." Wigler and his colleague Jonathan Sebat have looked primarily at these copy-number variations. A basic principle of genetics is that we have two of each gene, one from our mother and one from our father. But sometimes, a person actually has three, four, or as many as twelve copies of a gene or group of genes; or in the case of deletions, only one copy of a gene or group of genes, or none at all. The average person has at least a dozen copy-number variations, generally benign. Certain locations on the genome appear to be linked with cognitive disorders. Repetitions in these locations are associated with vulnerability to schizophrenia, bipolar disorder, and autism. However, deletions in the same region are linked only to autism. Wigler has found that many of his autistic subjects possess large deletions, lacking as many as twenty-seven genes. Sebat is now studying whether people with autism and a repetition have the same syndrome as those with autism and a deletion. He has found some significant correlations-for example, that the people with a deletion consistently have larger heads than those with a duplication in the same spot.

The ultimate goal is to map these genes, describe their function, develop model systems, clarify molecular and cellular mechanisms, and then, finally, devise practical applications of findings. We are still identifying the rare variants; we are at the tip of the iceberg. Wigler pointed out that even when we've got all the information, we will have to contend with gene interactions that are not always subject to mathematical mapping. "There is probably an interplay between personality and the deficit," he said. "You and I could have similar deficiencies, but we would make different choices. It sounds odd that a two-year-old may be making a choice about what he can and can't handle, but they probably do. You could have two kids that grow up in the same impoverished environment, and one joins the priesthood and the other becomes a thief, right? I think that can happen internally." environment, and one joins the priesthood and the other becomes a thief, right? I think that can happen internally."

"We are at the place now where we were twenty-five years ago with cancer genetics," said Daniel Geschwind, codirector of the Center for Neurobehavioral Genetics at UCLA. "We know about twenty percent of the genetics; given how late the work started compared with research on schizophrenia and depression, the progress is remarkable." Autism Autism is a catchall category for an unexplained constellation of symptoms. Whenever a subtype of autism with a specific mechanism is discovered, it ceases to be called autism and is assigned its own diagnostic name. Rett syndrome produces autistic symptoms; so, often, do phenylketonuria (PKU), tuberous sclerosis, neurofibromatosis, cortical dysplasia-focal epilepsy, Timothy syndrome, fragile X syndrome, and Joubert syndrome. People with these diagnoses are usually described as having "autistic-type behaviors," but not autism per se. If autism is defined by behavior, however, it seems counterproductive to describe as "not autistic" those whose autistic behavior has a known origin. is a catchall category for an unexplained constellation of symptoms. Whenever a subtype of autism with a specific mechanism is discovered, it ceases to be called autism and is assigned its own diagnostic name. Rett syndrome produces autistic symptoms; so, often, do phenylketonuria (PKU), tuberous sclerosis, neurofibromatosis, cortical dysplasia-focal epilepsy, Timothy syndrome, fragile X syndrome, and Joubert syndrome. People with these diagnoses are usually described as having "autistic-type behaviors," but not autism per se. If autism is defined by behavior, however, it seems counterproductive to describe as "not autistic" those whose autistic behavior has a known origin.

Until recently, researchers devoted limited energy to these infrequent syndromes, but some have now turned their attention to them with the thought that if we could understand why such conditions cause autistic behavior, we might be able to access the larger mechanisms of autism.

Rapamycin, an immunosuppressant drug usually used in organ transplants, has suppressed seizures and reversed learning disabilities and memory problems in adult mice with tuberous sclerosis; it might have a similar effect on some human beings with the condition. Dr. Alcino Silva of UCLA said of that work, "Memory is as much about discarding trivial details as it is about storing useful information. Our findings suggest that mice with the mutation cannot distinguish between important and unimportant data. We suspect that their brains are filled with meaningless noise that interferes with learning." This evokes the sensory experiences described by many autistic people; "noise" may be a major mechanism of the syndrome.

Fragile X and Rett syndrome are both single-gene mutations. People with fragile X have a gene mutation that encodes a protein that in turn blocks an important brake on protein synthesis in the brain. While the mechanism by which the mutation causes intellectual and behavioral deficits is not known, a current theory is that these symptoms result from excessive protein production. Mice artificially bred with the fragile X mutation overproduce protein, and show learning problems and social deficits. One therapy for fragile X syndrome would be to block the mGluR5 receptor, which is a major stimulus for protein synthesis in the brain. Drugs that do so have reduced the excessive protein, suppressed seizures, and normalized behavior in fragile X mice. The genetics and mechanism of Rett syndrome differ from those associated with fragile X, but mice artificially bred with the Rett syndrome mutation have likewise responded to drugs that target a pathway affected by their mutation. in the brain. Drugs that do so have reduced the excessive protein, suppressed seizures, and normalized behavior in fragile X mice. The genetics and mechanism of Rett syndrome differ from those associated with fragile X, but mice artificially bred with the Rett syndrome mutation have likewise responded to drugs that target a pathway affected by their mutation.

A surprising finding from studies of mice with either fragile X or Rett syndrome is that even adult mice have shown striking reversal of symptoms with medication. Drugs for fragile X and Rett syndrome are now in early-stage clinical trials in humans, and very preliminary data with at least one compound suggest positive effects on social engagement in children with fragile X. Recent biomedical research has been fraught with exciting findings in mice that cannot be replicated in humans. Nevertheless, these findings raise a significant challenge to the assumption that developmental disorders are hardwired into the brain and cannot be reversed. If they are a consequence of impaired function of cellular pathways, then it may be possible to resolve some symptoms of autism without altering genes. In other words, autism symptoms may reflect not brain development, which is usually irreversible, but brain function, which is often pliable. It is clear, however, that instigating normal brain function in someone whose brain has developed without it will not fully resolve symptoms. Geraldine Dawson, chief science officer of Autism Speaks, said, "You've fixed their car's broken engine, but you still have to teach them to drive."

In 2012, Wigler and other scientists at Cold Spring Harbor Laboratory discovered a link between genes affected by fragile X and genes that are disrupted in some children with idiopathic autism. This suggests that medications showing promise in fragile X may be helpful to a larger subset of autistic people. Wigler and Sebat believe that we'll eventually see what more of the rare gene variants do. Some probably disable or duplicate enzymes that a drug might mimic or inhibit. Others might affect neurotransmitter levels or change the pH or environment of the synapse, and it may be possible to reverse those effects. "I would be amazed if there aren't pharmacological treatments for more of this," Wigler said. "We'll never know all the genes, and we'll never have a treatment that works for everyone, but we should be able to find good treatments for a subset of patients."

The Cambridge autism researcher Simon Baron-Cohen postulates that women are empathizers, hardwired to understand others, while men are systemizers, hardwired to organize factual and mechanical information. Autism, in this view, is an overexpression of cognitive masculinity-short on empathy and long on systems. Baron-Cohen has investigated the extent to which unusually high levels of prenatal testosterone might alter brain structure and engender autism. Given that more androgens circulate in utero during pregnancy with a boy, a smaller excess would tip a male fetus into autism than would tip a female. This may be a partial explanation for why autism occurs twice as often in males as in females. has investigated the extent to which unusually high levels of prenatal testosterone might alter brain structure and engender autism. Given that more androgens circulate in utero during pregnancy with a boy, a smaller excess would tip a male fetus into autism than would tip a female. This may be a partial explanation for why autism occurs twice as often in males as in females.

Autistic people are indeed often systemizers; many have uncanny technical abilities. Some are savants who do not function independently in many areas of life but have extraordinary abilities in one domain-sometimes a relatively trivial one, such as the ability immediately to list the dates of Easter for every year until the end of time, and sometimes a useful one, such as the competence to create meticulously accurate drawings, or to hold in mind a complex design, or to produce a perfect map of Rome after flying over the city once. Whether this has to do with prenatal testosterone is subject to debate, but there is a maleness to this way of being.

Extreme trauma can provoke behavior that resembles autism. Some people appear autistic following perinatal injury. Grossly neglected children taken from Ceauecu-era Romanian orphanages often showed autistic-like behavior, though examination showed them disengaged not merely from other people, but also from the material world. Bruno Bettelheim was a Holocaust survivor who had seen autistic-style withdrawal in other inmates at Dachau, and on this basis he mistakenly concluded that all autism was linked to abuse. Certainly, however, abuse can exacerbate symptoms associated with the disorder.

Too often, the presence of autism confuses parents and doctors, so that other ailments may go undetected or untreated. Margaret Bauman of Harvard Medical School described how one of her autistic patients had for years suffered spasmodic twists and writhing. These had been presumed to be the symptoms of autism and therefore ran unchecked. Referral to a gastroenterologist revealed that the patient had esophageal ulcers; when these were treated, her gyrations stopped. Fred Volkmar at Yale described a nine-year-old boy who had such severe motor issues that he was unable to hold a pencil. When the boy entered third grade and the other students were learning cursive penmanship, Volkmar suggested giving the boy a laptop. The teacher objected to giving the boy a "crutch." Volkmar said, "If you didn't have a leg and I gave you a crutch, that would be a mitzvah."

Approximately one-third of autistic people have at least one psychiatric diagnosis in addition to autism, compared to 10 percent of the general population, but they frequently don't get treatment for these complicating factors. One in five suffers from clinical depression, and about 18 percent from anxiety. Kamran Nazeer's autistic friend Elizabeth had inherited a tendency toward depression from her nonautistic parents. "The doctors were reluctant to prescribe antidepressants or make any firm diagnosis of the malaise," he writes mournfully. "Wasn't it all really caused by her autism?" She eventually committed suicide. about 18 percent from anxiety. Kamran Nazeer's autistic friend Elizabeth had inherited a tendency toward depression from her nonautistic parents. "The doctors were reluctant to prescribe antidepressants or make any firm diagnosis of the malaise," he writes mournfully. "Wasn't it all really caused by her autism?" She eventually committed suicide.

John Shestack and Portia Iversen founded Cure Autism Now, which was the leading private funder of autism research until it merged with Autism Speaks; they started the Autism Genetic Research Exchange, the largest open-resource gene bank in the world; they drafted many leading autism geneticists. "The belief that poor parenting caused autism meant that no meaningful research was done for fifty years after it was described," Portia said. "When our son, Dov, was diagnosed, autism was under the radar, not under the microscope. I didn't think I was good at science. But the same way you learn to jump if your house is on fire and you're on the third floor, that's how I learned the science of autism." She wanted to increase researchers' contact with families affected by autism. "The most effective thing we could do was to become the data," she said.

Like Carly Fleischmann, Dov Shestack has emerged as having normal intelligence-a whole mind that had been immured in silence for many years. When he was nine, Portia asked him to point to the letter s, s, and he did so, and she soon realized that he could read. "It was really shocking," she said. "You don't think they can read when you don't know they can think." When she understood that Dov could express himself, she asked him what he'd been doing all these years. "Listening," he said. His education remains problematic; he needs one-on-one support, but he's cognitively normal. "There's a popular belief that you can't have someone who acts retarded and is intelligent," Portia said. "But you can." and he did so, and she soon realized that he could read. "It was really shocking," she said. "You don't think they can read when you don't know they can think." When she understood that Dov could express himself, she asked him what he'd been doing all these years. "Listening," he said. His education remains problematic; he needs one-on-one support, but he's cognitively normal. "There's a popular belief that you can't have someone who acts retarded and is intelligent," Portia said. "But you can."

Portia Iversen has investigated the deepest riddle of autism: the relationship between what can be observed and what is going on inside autistic people. "Some autistic people seem unmotivated to communicate. I can't be positive, but it appears that way. Then there are people who desperately want to be understood. I see a big split in my son between his disorder and his personality. He's mostly not doing what he wants to do and acting as he wants to act. Many mornings, he starts making whining noises, flipping his hands; it's like a chemical storm. It just drives him. Even with that, he's much happier than before I realized he was saying something. Even constrained communication is the difference between life and death."

Given the broad range of symptoms, all of which seldom coincide in a single case, diagnosis is an extremely subtle enterprise and is made more difficult by the idea of an autism spectrum that fades into normality at one end. "It's much like IQ, weight, or height," Geschwind points out. "There's optimal weight; there's a few extra pounds that some people may find unattractive; there's obesity that undermines everything else about your health." Everyone's mind is disordered in some measure sometimes, and how a spectrum contiguous with normality can also be categorical is a complicated question. "Classrooms," Isabelle Rapin said, "are dichotomous, which is the only reason for these classifications of children whose differences are not black-and-white: so they can be put in the right room or center. This is policy, not biology."

The innumerable questionnaires and inventories, seldom fully sufficient for diagnosis, include the Autism Behavior Checklist (ABC), the Childhood Autism Rating Scale (CARS), the popular Checklist for Autism in Toddlers (CHAT), the seven-hour-long Diagnostic Interview for Social and Communication Disorders (DISCO), the Autism Diagnostic InterviewRevised (ADI-R), and the highly regarded Autism Diagnostic Observation ScaleGeneric (ADOS-G). It's hard to find a consistent instrument that applies to both people who speak and those who are nonverbal. Any of these tests can produce different results depending on who is conducting it. In the ADOS, for example, you are supposed to see if you can coax a child into imaginative play. Some examiners I observed had tremendous vitality and imagination; others were simpering or overbearing or tired and not imaginative themselves. Also, the examiner has to be able to distinguish between what kids can't do (autism) and what they won't do (personality or mood issues). The severity of autistic symptoms tends to fluctuate in any individual, so someone may perform differently one day from another. More adults are seeking diagnosis, so the tests have to work for people of variable ages. Because autism is a developmental disorder, however, it is not diagnosed unless symptoms began before age three; autistic-like symptoms that set in later are not considered developmental.

Medicine has been too eager in many cases to dismiss parents' insight. August Bier, a physician practicing in the early twentieth century, said, "A smart mother often makes a better diagnosis than a poor doctor." The closeness with which a parent observes can be as powerful as the expertise with which a physician observes, and setting them up in opposition to each other is a disaster for everyone. But medicine is often unprepared for parental perspectives that do not align with an illness model. For many parents, diagnosis is a crossing of the Styx into hell. For others, such as Kathleen Seidel-disability rights advocate, founder of the website Neurodiversity.com, and parent of a young adult diagnosed with Asperger syndrome at the age of ten-it can be a revelation. "I think of diagnoses as an aid to pattern recognition in our lives," she said. "We could make sense out of things that had previously been inexplicable to us; we felt validated. At the same time, I could feel this pull of lessened expectations by virtue of a diagnosis, and it didn't seem right or healthy to me to think that way. God has many different ways to build a brain. A Cray supercomputer is used for really complex, intense computing that involves the manipulation of massive amounts of data. It runs so hot it has to be kept in a liquid cooling bath. It requires a very specific kind of TLC. And 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. He needs support, needs attention, and is amazing." founder of the website Neurodiversity.com, and parent of a young adult diagnosed with Asperger syndrome at the age of ten-it can be a revelation. "I think of diagnoses as an aid to pattern recognition in our lives," she said. "We could make sense out of things that had previously been inexplicable to us; we felt validated. At the same time, I could feel this pull of lessened expectations by virtue of a diagnosis, and it didn't seem right or healthy to me to think that way. God has many different ways to build a brain. A Cray supercomputer is used for really complex, intense computing that involves the manipulation of massive amounts of data. It runs so hot it has to be kept in a liquid cooling bath. It requires a very specific kind of TLC. And 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. He needs support, needs attention, and is amazing."

Marvin Brown's mother, Icilda, has delineated what she can influence and what she cannot, and she does not rail against what is beyond amelioration. It is easy to patronize "simple wisdom" by honeying the rough circumstances from which it generally springs, or by representing it as simpler or wiser than it is, but Icilda Brown seemed more at peace with her son's condition than almost any other mother I met. A lifetime of nonchoices had given her a gift for acceptance. She demanded good services for her son, but did not expect those services to turn him into someone else. The story of middle-class and affluent parenting of autistic children is an interminable saga of tilting at windmills; in contrast, I admired both Icilda's acquiescence and the happiness that was its corollary.

Icilda grew up in South Carolina, one of ten children in a poor African-American farming family. She came to New York in the 1960s and found work cleaning houses. She married young, and by thirty she was mother to five children. Marvin was next to youngest. By two, Icilda said, he was different. "Three years old, he started to talk, and then he just stopped, and he didn't really try to talk anymore until he was five." The diagnosis of autism came when he was almost four, in 1976. "He never would cry," Icilda recalled. "He just would be happy, playing and running back and forth. He would get up early-two in the morning every day. When he gets up, I get up. He couldn't stay still. I just got used to it." Cleaning houses for a living is not light work, and Icilda did it for many years on the three to four hours of sleep that her life with Marvin allowed her. "I prayed not to be too tired," she said. "I prayed for guidance, to help me to do the right thing, and for strength, to put up with him, because that's what it takes every day."

Icilda enrolled Marvin in a program for autistic children at Jacobi Hospital in the north Bronx, an hour from her home. The program kids were mostly attending public schools near Jacobi, and since Marvin hated to travel, Icilda picked up her family and moved near the schools. Marvin was a hand-flapper and had many other repetitive behaviors. He had limited speech. Even though Icilda's husband left when Marvin was ten, he has had a constant, attentive mother, the same schools, the same apartment, as much continuity as Icilda was able to manage. "When he's sad, he'll tell you, 'I'm very sad,'" Icilda said. "When he's happy, he's happy. If he gets angry, he'll say, 'I'm angry!' And I'll talk him down and pat him. I'll say, 'You just sit down and relax.' I can calm him." As a devout Jehovah's Witness, Icilda has relied on the community of her religion. "Our church was the biggest comfort and still is. Everyone there was very, very supportive. All of them know him; he knows them."

Taking care of Marvin became easier in some ways as he grew older. He slept more; he was better able to be on his own. But he became more self-conscious about his condition. When Marvin entered his twenties, Icilda gave up cleaning houses and found work taking care of the elderly in Mt. Vernon, New York, and her hours were a bit lighter. She had been advised by professionals that Marvin might do well in a group home, and she secured a place for him. Before taking him there, she said, "This is only if you want to stay." She promised to bring him home every weekend. At first he said he didn't like it, but she insisted that he give it a fair chance. He was no happier at the end of the year, so she brought him home. Some five years later, while Marvin was attending a day program in the Bronx, he became upset; others who were present later claimed that he was provoked by one of his teachers. Although Marvin had no history of violence, the day-program worker called the police, who manacled him and brought him to a mental hospital. When Icilda learned that her son was locked up, she rushed to the hospital to retrieve him. Marvin was terrified and utterly confused. Icilda was outraged. "I sent a letter to the mayor, the commissioner-everybody. I got one of the people I used to clean for to help me write. They brought the whole state down on them. They put the program under investigation." Other frightened people had gone through the same experience, and the woman who was responsible was removed from her job. Icilda transferred Marvin to a new day program, where he has been prepared for employment; under supervision, he has worked in a bookstore and for a messenger service and has learned to perform janitorial duties.

Icilda was sixty-two when we met, and it had been forty-three years since she began the care of infants. "He takes a lot of supervision," she said. "But he calls me, you know, 'my friend.'" She said it with domestic bluster and contentment and a shy smile. Icilda has become a community resource; she has met with hundreds of other parents, and she made videos of Marvin that are shown at the centers where he has been helped. "I'll say, 'You see my son now. And now see your kid's running and not talking. That was him. If you give up, your child doesn't have a chance.'" She paused, with a big, open smile. "I looked back, and I said to the Lord, 'Oh, thank you for bringing me from such a since she began the care of infants. "He takes a lot of supervision," she said. "But he calls me, you know, 'my friend.'" She said it with domestic bluster and contentment and a shy smile. Icilda has become a community resource; she has met with hundreds of other parents, and she made videos of Marvin that are shown at the centers where he has been helped. "I'll say, 'You see my son now. And now see your kid's running and not talking. That was him. If you give up, your child doesn't have a chance.'" She paused, with a big, open smile. "I looked back, and I said to the Lord, 'Oh, thank you for bringing me from such a long long ways.'" ways.'"

The Autism Society of America estimates that one and a half million Americans are on the spectrum; the CDC says 560,000 people under twenty-one have autism; the US Department of Education says that autism is growing at a rate of 10 to 17 percent per year, and that numbers in the United States could reach four million in the next decade. Recent work suggests that more than 1 percent of the world population may be on the spectrum. Part of the upsurge has to do with the broadening of categories: people who might once have been classed as schizotypal or mentally retarded are now on the spectrum, as are some who would once have been thought odd but not given a diagnosis. Aggressive advocacy by parents has helped to establish better services for kids with autism than for kids with other afflictions. If you attach better services to a diagnostic category, some doctors will apply that diagnosis to children for whom it is not entirely appropriate in order to access those services. Parents who might once have shunned an autism label to avoid being unjustly blamed for their child's disability are now willing to seek out that label so their children may qualify for special-education services. California, for example, has considerable diagnostic substitution; the state reported a decrease in mental retardation coincident with a twelvefold increase over twenty years in services for autism. Autism researcher Laura Schreibman estimates that the lifetime cost of autism is $5 million; even parents with full insurance incur tremendous annual costs. Many insurers refuse to pay for labor-intensive strategies such as ABA, which is an educational rather than a medical strategy, and many parents who have the wherewithal sue their insurance company, their school board, their local government, or all three. Having a severely impaired child is utterly draining; these legal proceedings often stretch parents to the breaking point.

Is autism itself also on the rise? Inconceivable time and energy have been poured into this question, and no consensus has emerged, but it seems reasonable to conclude that both diagnosis and incidence have increased. During the decade that I spent working on this book, people would hear my list of chapters and then offer to introduce me to friends who were dealing with autism at least ten times as often as they would offer introductions to people with any of the other conditions. NIMH director Thomas Insel recounted a time during the 1970s when an autistic child was admitted to Boston Children's Hospital; the chief of service called the residents together to observe him, reasoning that they might never see an autistic child again. On Insel's own street today, which has nine houses, two children have autism. Steven Hyman, former head of the NIMH and former provost of Harvard, said, "The growth in the diagnosis of the autism spectrum reflects destigmatization and broader education. Does that mean that there is no increase in incidence? No, but it confounds our ability to tell." Several studies applying current diagnostic criteria have shown that people who were once considered nonautistic would be considered autistic by current criteria, though such work is always somewhat speculative. would hear my list of chapters and then offer to introduce me to friends who were dealing with autism at least ten times as often as they would offer introductions to people with any of the other conditions. NIMH director Thomas Insel recounted a time during the 1970s when an autistic child was admitted to Boston Children's Hospital; the chief of service called the residents together to observe him, reasoning that they might never see an autistic child again. On Insel's own street today, which has nine houses, two children have autism. Steven Hyman, former head of the NIMH and former provost of Harvard, said, "The growth in the diagnosis of the autism spectrum reflects destigmatization and broader education. Does that mean that there is no increase in incidence? No, but it confounds our ability to tell." Several studies applying current diagnostic criteria have shown that people who were once considered nonautistic would be considered autistic by current criteria, though such work is always somewhat speculative.

Many scientists have argued that regressive autism is not regressive at all-that children with a particular genotype simply begin to show symptoms at a stage in their development; the autism comes in at its time, like teeth or body hair. Many parents whose children have regressed, however, argue nearly the opposite: that regression is caused by a specific environmental trigger. Because regression often occurs at around the same age that children are immunized, many parents have attributed their children's autism to vaccines, particularly the measles-mumps-rubella (MMR) vaccine, and vaccines containing the mercury-based preservative thimerosal. MMR was introduced in the United States in the 1970s and by the 1980s was in widespread use. Because it is not effective during the first year of life, when maternal antibodies block its action, the first dose is administered at about thirteen months. In 1998, British gastroenterologist Andrew Wakefield of the Royal Free Hospital published a paper in the Lancet Lancet positing an association between the MMR vaccine and gastrointestinal problems in autistic children. Wakefield and his colleagues described only twelve cases; nonetheless, journalists seized upon the story, and many parents stopped vaccinating their children. In Britain, rates of immunization against measles dropped from 92 percent to less than 80 percent, and cases of the disease began to skyrocket. Whereas only 56 children in England and Wales contracted measles in 1998, and none died, in 2008, 5,088 cases were reported in the UK, resulting in the deaths of 2 children. positing an association between the MMR vaccine and gastrointestinal problems in autistic children. Wakefield and his colleagues described only twelve cases; nonetheless, journalists seized upon the story, and many parents stopped vaccinating their children. In Britain, rates of immunization against measles dropped from 92 percent to less than 80 percent, and cases of the disease began to skyrocket. Whereas only 56 children in England and Wales contracted measles in 1998, and none died, in 2008, 5,088 cases were reported in the UK, resulting in the deaths of 2 children.

Numerous demographic studies have consistently failed to demonstrate a link between vaccines and autism. One study conducted by the Centers for Disease Control and Prevention followed 140,000 children and showed no connection; a Japanese study demonstrated that unvaccinated children actually had a higher rate of autism. After it became known that Wakefield was recruited by an attorney seeking to build a legal case against vaccine manufacturers, that eleven of the twelve study subjects were involved in this litigation, and that Wakefield had been paid for his services by the UK Legal Aid Corporation, ten of the study's thirteen authors officially retracted their names from it. The children actually had a higher rate of autism. After it became known that Wakefield was recruited by an attorney seeking to build a legal case against vaccine manufacturers, that eleven of the twelve study subjects were involved in this litigation, and that Wakefield had been paid for his services by the UK Legal Aid Corporation, ten of the study's thirteen authors officially retracted their names from it. The Lancet Lancet's editor subsequently apologized for publishing the paper, which he described as "fatally flawed"; in 2010, following an investigation by the UK General Medical Council, the journal retracted it altogether. With the advent of each new piece of evidence absolving vaccines, Wakefield's acolytes have alleged a cover-up and have shifted to new arguments that keep vaccines in the spotlight. Once thimerosal had been removed from all vaccines routinely administered to children without any decrease in the rate of autism diagnoses, some proposed that the problem arose from combination vaccines and their supposed assault on the immune system, or simply from too many vaccinations altogether.

Witnessing autistic regression seems to traumatize parents much more deeply than recognizing a disorder present from birth; parents are possessed by the idea that the child who once played and laughed with them can be rediscovered. Most of our understanding of autistic regression comes from speaking to parents about their children's development. Typically, parents of children who regress witness their child's loss of language at about sixteen months. I met one child who was evaluated because he had an autistic brother and was therefore considered high risk. At six months, he was chortling, playing, and enjoying his exchange with a diagnostician. At a little more than a year, the same child appeared oblivious to the same evaluator; he did not laugh, smile, or acknowledge the presence of others; he seemed flabby and glassy-eyed. It was difficult to believe that he was the same child. Some researchers have questioned whether such regression results from loss of function, or whether apparent early sociability in infancy may rely on different brain regions than more mature sociability. Researchers have estimated that between 20 and 50 percent of autism cases involve regression.

The journalist David Kirby's Evidence of Harm Evidence of Harm describes the evolution of the autism-vaccine hypothesis and reports on the divisions between parents convinced that vaccines harmed their children, and scientists and policymakers involved in vaccine development. Each side believes that the other is motivated by financial conflicts of interest and willfully distorted science. Citing failure of petitioners' attorneys to produce adequate scientific support for their causation arguments, the National Vaccine Injury Compensation Program is currently in the describes the evolution of the autism-vaccine hypothesis and reports on the divisions between parents convinced that vaccines harmed their children, and scientists and policymakers involved in vaccine development. Each side believes that the other is motivated by financial conflicts of interest and willfully distorted science. Citing failure of petitioners' attorneys to produce adequate scientific support for their causation arguments, the National Vaccine Injury Compensation Program is currently in the process of dismissing over five thousand claims alleging that vaccines are responsible for making children autistic. The debate is frequently acrimonious. Katie Wright, daughter of Autism Speaks cofounders Bob and Suzanne Wright, has claimed that her son began to display signs of autism immediately after being vaccinated, and that he has recovered in part through treatments that addressed the vaccine injury; she has urged her parents and the scientists they support to abandon "failed strategies" and embrace her perspective. The Wrights posted a statement on the Autism Speaks website clarifying that their daughter's "personal views differ from ours." The vaccine argument is championed by ex process of dismissing over five thousand claims alleging that vaccines are responsible for making children autistic. The debate is frequently acrimonious. Katie Wright, daughter of Autism Speaks cofounders Bob and Suzanne Wright, has claimed that her son began to display signs of autism immediately after being vaccinated, and that he has recovered in part through treatments that addressed the vaccine injury; she has urged her parents and the scientists they support to abandon "failed strategies" and embrace her perspective. The Wrights posted a statement on the Autism Speaks website clarifying that their daughter's "personal views differ from ours." The vaccine argument is championed by exPlayboy centerfold and comedienne Jenny McCarthy. Critics have observed that McCarthy gains considerable publicity from her crusade and earns a tidy living from speaking engagements. centerfold and comedienne Jenny McCarthy. Critics have observed that McCarthy gains considerable publicity from her crusade and earns a tidy living from speaking engagements.

In March 2008, the Atlanta Court of Federal Claims conceded in the Hannah Poling case that a chicken-pox vaccine had probably aggravated an underlying mitochondrial disorder to create autistic-type symptoms in one child. The case has been treated by antivaccinationists as overdue justice. Some draw parallels between themselves and the early antitobacco movement. "We had an epidemic in lung cancer and heart disease in the fifties and sixties and the cigarette companies had all this science that showed cigarettes had nothing to do with it," said Lenny Schafer, progenitor of the Schafer Autism Report Schafer Autism Report and adoptive father of a young man with autism. and adoptive father of a young man with autism.

Many neurodiversity and autism rights activists are, conversely, offended by the vaccine arguments, which they find scientifically groundless and insulting to people with autism. Kathleen Seidel said, "Juries and judges hear these stories, and people's hearts lead the way. But hearts leading the way don't always lead to justice."

Epidemiological studies have demonstrated no correlation between vaccination and autism. Does that mean that no no children have a vulnerability triggered by vaccines? One mother whose child regressed told me, "The pediatrician gave him the vaccine, and within twenty-four hours he had a white count of thirty-one thousand. He was in the hospital and they said it was sepsis. After he came out, he was less socially engaged. A lot less socially engaged. It was like I went into the hospital with one kid and I came out with another." Portia Iversen said, "You can't confront someone's experience with a lot of evidence." Insel said, "It seems to me that the story is the increase in food allergies, asthma, diabetes, autism, pediatric bipolar disorder, which has gone up forty-fold in the last ten years. I wonder if there isn't something more general going on that explains all of this. I can't tell you what. But that sounds to me like an environmental factor." Unfortunately, modern life children have a vulnerability triggered by vaccines? One mother whose child regressed told me, "The pediatrician gave him the vaccine, and within twenty-four hours he had a white count of thirty-one thousand. He was in the hospital and they said it was sepsis. After he came out, he was less socially engaged. A lot less socially engaged. It was like I went into the hospital with one kid and I came out with another." Portia Iversen said, "You can't confront someone's experience with a lot of evidence." Insel said, "It seems to me that the story is the increase in food allergies, asthma, diabetes, autism, pediatric bipolar disorder, which has gone up forty-fold in the last ten years. I wonder if there isn't something more general going on that explains all of this. I can't tell you what. But that sounds to me like an environmental factor." Unfortunately, modern life has too many environmental variables to catalog: cell phones, air travel, televisions, vitamin pills, food additives. Many people believe that environmental heavy metals have afflicted their children. Others blame a broad range of other substances, especially bisphenol-A, a man-made, estrogen-based polymer used in plastics, which has an annual production of more than three million tons. Most geneticists acknowledge that these questions have not been fully resolved, and that they may not be resolved for many years. has too many environmental variables to catalog: cell phones, air travel, televisions, vitamin pills, food additives. Many people believe that environmental heavy metals have afflicted their children. Others blame a broad range of other substances, especially bisphenol-A, a man-made, estrogen-based polymer used in plastics, which has an annual production of more than three million tons. Most geneticists acknowledge that these questions have not been fully resolved, and that they may not be resolved for many years.

Reversing much accepted science, however, in 2011, Stanford psychiatrist Joachim Hallmayer and his colleagues checked identical and fraternal twins for autism and used mathematical modeling to show that genetics determined only 38 percent of the cases they studied, while shared environmental factors appeared to be primarily responsible in 58 percent of cases. The rate of concordance in identical twins was lower than anticipated, suggesting that genetics does not tell the whole story; the rate of concordance in fraternal twins was higher than expected, suggesting that environment-perhaps the uterine environment-plays a significant role. Neil Risch, the director of the UCSF Institute for Human Genetics and the designer of the study, said, "We're not trying to say there isn't a genetic component-quite the opposite. But for most individuals with autism spectrum disorder, it's not simply a genetic cause." The study was described as a "game-changer" by Joseph Coyle, editor of Archives of General Psychiatry Archives of General Psychiatry. A separate group, in a study published at the same time and in the same journal, found that mothers who took SSRIs, a category of antidepressants, just before or during pregnancy had children with an increased risk of autism. These data are all preliminary, and the data showing that autism is 70 percent heritable are more robust, but mainstream science will have to reconsider the idea of significant environmental risk.

Mark Blaxill is a polished Princeton graduate, founder of a business consulting firm, and one of the most sophisticated proponents of the vaccine causation of autism. He and his wife, Elise, went through ten rounds of IVF, ten miscarriages, and two ectopic pregnancies. They finally produced two daughters. Their second, Michaela, seemed to develop normally for her first year, but before she turned two, Elise began to think something was wrong. When she was two years and nine months, they got a diagnosis. "I wasn't engaged," Mark said. "Work was a big deal. Michaela was an easy child. My way of dealing with the grief was to get really aggressive about learning everything I could, so I went almost to vocational school in neuroscience; I was consumed with it."

By the time I met Mark, Michaela was twelve and had made significant progress. Mark listed the ten people who took care of her-therapists, sitters, doctors who attended to her delicate physical health. He was well aware that few people could afford all this. Nonetheless, he was deeply frustrated. "Michaela had a full-syndrome autistic diagnosis when she started. She didn't speak. Now she's engaged, lovely, very social. The language is still not quite at an Asperger's level, but she's approaching that. But all she wants to talk about is Jiminy Cricket and Pinocchio. Our job is to move her off that. I just want her to talk about something other than Jiminy Cricket."

Mark is consumed with his activism. "I think autism is a brain rash," he said to me. "And if you have politically incorrect ideas, like the fact that autism originated in vaccines and mercury, then you get accused of obstructing scientific inquiry. We believe that it's the epidemic, stupid; it's environmental. I'm unsatisfied with the solutions, I'm unsatisfied with the science, I'm unsatisfied with the institutions. Genetics research has failed miserably. And the CDC's job is to manage vaccine safety, so they produce bullshit studies that give them the outcome they want." Mark talked about a study he coauthored that showed reduced mercury levels in the first haircuts of autistic children, which he took as evidence that they are not able to excrete mercury as efficiently as other babies. He has published peer-reviewed papers in respected journals such as NeuroToxicology. NeuroToxicology. Encountering his passion, it's hard not to be converted-except that much of the science he cites has been soundly refuted, and much of the science he disparages appears to have a strong empirical basis. Of course, science is always subject to revision, but, as Bruce Stillman, president of Cold Spring Harbor Lab, has pointed out, science cannot have an agenda, and it appears that this science does. Encountering his passion, it's hard not to be converted-except that much of the science he cites has been soundly refuted, and much of the science he disparages appears to have a strong empirical basis. Of course, science is always subject to revision, but, as Bruce Stillman, president of Cold Spring Harbor Lab, has pointed out, science cannot have an agenda, and it appears that this science does.

Mark said, "I was the captain of the football team, the president of the student council, National Merit scholar. I was a pleasure for my parents to have as a child. The autism advocacy thing is about the mission, it's not about winning or making more money than the other guy, or getting better grades-you consign yourself to the margin of respectable society if you do what I've chosen to do. It's liberating. 'Cause I don't give a shit what the New York Times New York Times thinks; I just want to do the right thing and make a mark on the world." thinks; I just want to do the right thing and make a mark on the world."

American law provides guarantees of education that are not matched by guarantees of medical care. Education is a government responsibility; medical care is a personal responsibility, controlled in large measure by insurance companies. For that reason, some advocates have preferred to keep treatment for autism in the arena of education rather than of medicine; so far, the pedagogic interventions appear to work better than the medical ones, so most current treatments are school-based. As with Down syndrome and many other disabilities, autism is best identified and addressed as early as possible. to keep treatment for autism in the arena of education rather than of medicine; so far, the pedagogic interventions appear to work better than the medical ones, so most current treatments are school-based. As with Down syndrome and many other disabilities, autism is best identified and addressed as early as possible.

Early intervention requires early detection. Ami Klin and colleagues at Yale have conducted an experiment in which both autistic and nonautistic adults watched Who's Afraid of Virginia Woolf? Who's Afraid of Virginia Woolf? Using computer tracking, the researchers found that autistic people do not switch their gaze back and forth between the arguing protagonists as nonautistic subjects do. Building on that work, they have infants watch videos of other children and mothers; the typically developing infants focus on eyes, while the ones at risk for autism focus on objects or mouths. Despite broad concurrence that early diagnosis is valuable because early treatment is effective, there is no consensus about what that early treatment should be. As Bryna Siegel, a psychologist at UCSF, has written in Using computer tracking, the researchers found that autistic people do not switch their gaze back and forth between the arguing protagonists as nonautistic subjects do. Building on that work, they have infants watch videos of other children and mothers; the typically developing infants focus on eyes, while the ones at risk for autism focus on objects or mouths. Despite broad concurrence that early diagnosis is valuable because early treatment is effective, there is no consensus about what that early treatment should be. As Bryna Siegel, a psychologist at UCSF, has written in Helping Children with Autism Learn, Helping Children with Autism Learn, "The picture of autism treatment is complicated by the fact that there are very different perspectives from which to view treatment: developmental, behavioral, educational, cognitive, and medical. Practitioners from these different perspectives often don't understand one another's vocabularies." "The picture of autism treatment is complicated by the fact that there are very different perspectives from which to view treatment: developmental, behavioral, educational, cognitive, and medical. Practitioners from these different perspectives often don't understand one another's vocabularies."

Charles Ferster, an American behavioral psychologist, was the first to propose that people could learn through conditioning just as animals do. This idea led, in the 1960s, to the behavioral interventions now used in treating autism, most particularly to applied behavior analysis (ABA). Such treatments are based on observing the child, pinpointing his negative or obsessive behaviors, and developing positive substitutes for them. Desirable acts receive positive reinforcement: if the child speaks, for example, he may get what he wants. Negative acts do not receive reinforcement: temper tantrums are never rewarded. Many behaviorist treatments are in circulation. Much of this teaching remains unnatural to the child and thus requires constant maintenance, yet many parents consider it vital-just as many hearing parents require a language in which they can communicate with their deaf children.

Other successful autism treatments involve learning from the behavior of the person with autism. Dr. Stanley Greenspan garnered an enormous amount of publicity for his Developmental, Individual Difference, Relationship-Based (DIR/Floortime) Model, which involves getting down on the floor with the autistic child to forge a connection. Auditory Integration Training and Sensory Integration Therapy attempt to address the particular hypersensitivities of autistic children. Speech therapy introduces them to the use of language and helps with articulation. Soma Mukhopadhyay, with no background in the field, developed the Rapid Prompting Method (RPM) in India to treat her own son, who was nonverbal and now types poetry. children. Speech therapy introduces them to the use of language and helps with articulation. Soma Mukhopadhyay, with no background in the field, developed the Rapid Prompting Method (RPM) in India to treat her own son, who was nonverbal and now types poetry.

Service dogs that resemble Seeing Eye dogs are often invaluable to autistic children and adults, helping to stave off panic attacks, provide physical orientation, and build an emotional bridge between autistic people and the social world. One mother exulted about the change in her son, Kaleb, after a service dog joined their family. "He seems so much more secure and more grounded than he ever has before. He seems to be handling things so much better. It's so important for Kaleb and Chewey to be together twenty-four hours a day. They both need to know that they are each other's constant." A legal brief about whether Kaleb should be allowed to take a dog to school said, "Since receiving Chewey, K.D. becomes upset for shorter periods of time, completes his homework, and sleeps between six to eight hours per night. He has less difficulty transitioning between home and other public places, including school."

Some parents modify their children's diets, as there are anecdotes of people with autism who are unable to tolerate gluten, casein, and other substances that occur in many foods. The SSRIs, the class of antidepressants that includes Prozac, Zoloft, and Paxil, have been used to control the anxiety to which some autistic people are subject; the results appear to be mixed. As many as a fifth to a third of autistic people develop epilepsy, and they are helped by antiseizure medications. The stimulant drugs commonly used for ADHD are sometimes prescribed to calm people with autism, as are various sedatives, and antipsychotics such as Haldol and Mellaril.

The results achieved with all of these treatments are inconsistent, and the effort and cost of initiating them is extreme. Even if an autistic person develops and sustains speech, functional skills, and a degree of social awareness, he will not become nonautistic; a distinctive cognitive profile will remain. Kamran Nazeer described how he discovered in adulthood what is obvious to most children: "I began to understand. A conversation is performance, merely a series of juxtapositions. I say something to you. A phrase in what I said, a topic, a point of view, or nothing at all connects with something that you contain. Then you say something. And like this, we proceed." Such insights solve some challenges associated with autism, but they do not eliminate it.

Bruce Spade was a professional photographer in London for some twenty-seven years, and his eye for strange beauty shows in his lifetime of photographs of his autistic son, Robin, pictures that look deeply at a person who is sometimes inexplicably tortured and sometimes exuberant, sometimes angry at the camera and sometimes besotted with it. Robin is capable of great sweetness. "He used to have this thing Harriet and I called grebing," Bruce said. "I don't know if you've seen the great crested grebe doing a mating dance. They stand out of the water, and they shake their heads and make a lot of high-pitched sounds. Robin would look you in the eyes and he would shake his head, and sometimes he'd say, 'Look, look.' And if he grebed at you, that was his sign; you were in." But Robin was also inexhaustible and exhausting; as he grew up and grew stronger, his explosions of rage became increasingly frightening. He'd have a tantrum in the street and Bruce or Harriet would sit on him until he calmed down. Bruce and Harriet would have liked to have another child-"someone who knew how to play," in Bruce's words-but they were too tired to contemplate that. of photographs of his autistic son, Robin, pictures that look deeply at a person who is sometimes inexplicably tortured and sometimes exuberant, sometimes angry at the camera and sometimes besotted with it. Robin is capable of great sweetness. "He used to have this thing Harriet and I called grebing," Bruce said. "I don't know if you've seen the great crested grebe doing a mating dance. They stand out of the water, and they shake their heads and make a lot of high-pitched sounds. Robin would look you in the eyes and he would shake his head, and sometimes he'd say, 'Look, look.' And if he grebed at you, that was his sign; you were in." But Robin was also inexhaustible and exhausting; as he grew up and grew stronger, his explosions of rage became increasingly frightening. He'd have a tantrum in the street and Bruce or Harriet would sit on him until he calmed down. Bruce and Harriet would have liked to have another child-"someone who knew how to play," in Bruce's words-but they were too tired to contemplate that.