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.”
• • •
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.”
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 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.”
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 Har
ry 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.
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. 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, 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.”
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. We don’t know its cause or mechanism. The modifier 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 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.
In his memoir, 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.”
Though brain imaging has done little to reveal the mechanisms of au
tism, 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.
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