CHAPTER 5 V Autism The hallmark of progress is the retrenchment of diseases. Countless infectious illnesses are now prevented by vaccines or cured with antibiotics; HIV can be controlled for many people with antiretroviral therapy; deadly cancers can be forced into permanent remission. Understanding how maternal exposure to viruses may cause deafness has reduced the number of deaf children born to hearing parents, and cochlear implants reduce the number of people who are functionally deaf. Treatments for pituitary dwarfism have brought down the numbers of little people. Down syndrome is both detected earlier, leading some prospective parents to terminate pregnancies, and addressed far more effectively; schizophrenia is mitigated by neuroleptics. Genius and criminality continue to appear at a constant rate. But, mysteriously, autism seems to be on the rise. Some experts argue that we are simply diagnosing it more frequently, but improved diagnosis can hardly be the full explanation for the escalation from a rate of 1 in 2,500 births in 1960 to 1 in 88 today. We don’t know why autism is on the rise; indeed, we don’t know what autism is. It is a syndrome rather than an illness because it is a collection of behaviors rather than a known biological entity. The syndrome encompasses a highly variable group of symptoms and behaviors, and we have little understanding of where it is located in the brain, why it occurs, or what triggers it. We have no way to measure it but by its external manifestations. The Nobel Laureate Eric Kandel said, "If we can understand autism, we can understand the brain." That is a generous way of saying that we will understand autism only when we understand the brain. Autism parents are activist. Not since the height of the AIDS crisis has there been such an aggressive campaign for funding and research, with scores of organizations (many of them with snappy acronymic 222 titles such as SafeMinds) pursuing theories of causality, the development of behavioral treatments, appropriate schooling, disability benefits, support services, and supervised housing. Cure Autism Now, a parent group, pushed Congress to pass the 2006 Combating Autism Act, which mandated a billion dollars of spending in five years for research on autism and related disorders. Thomas Insel, director of the National Institute of Mental Health, said, "We get more calls from the White House about autism than about everything else combined." Between 1997 and 2011, the number of books and articles published per year about autism increased more than sixfold. Autism is deemed a pervasive disorder because it affects almost every aspect of behavior, as well as sensory experiences, motor functioning, balance, the physical sense of where your own body is, and inner consciousness. Intellectual disability is not part of autism per se; the syndrome is rooted in a disruption of social function. The primary symptoms, which may occur or not in any constellation in any individual with autism, are lack of or delay in speech; poor nonverbal communication; repetitive movement, including flapping arms and other self-stimulating behaviors; minimal eye contact; diminished interest in friendships; lack of spontaneous or imaginative play; compromised empathy, insight, and sociability; diminished capacity for emotional reciprocity; rigidity; highly focused interests; a fascination with objects such as spinning wheels and sparkling things. Autistic children and adults often think in an extremely concrete manner and may have difficulty understanding metaphor, humor, irony, and sarcasm. They are given to obsessive, stereotyped behavior, forming attachments to seemingly random objects, arranging toys by size or color rather than playing with them. Autistic people may engage in self-injurious behavior, including hand-biting and head-banging; they may have sensory-motor deficits. Many autistic children do not develop the ability to point to things and instead have to lead someone to what they wish to indicate. Some have echolalia, in which they repeat words or phrases, often without any apparent understanding of their meaning. The diction of autistic people who speak may lack intonation, and such people will often talk to others at great and repetitive length about the objects of their unbounded fascination. Food rituals and an extremely limited diet are common. People with autism may be exquisitely sensitive to sensory overload from crowded spaces, human touch, fluorescent or flickering lights, and noise. Many autistic people find minor irritants such as clothing tags unbearable. Autistic people are frequently confounded by things that please most other people. While most autistic children show early signs of the syndrome (whether recognized or 223 not), about a third appear to develop normally and then regress, often between sixteen and twenty months. Because any of these symptoms may occur in any degree, autism is defined as a spectrum that includes varying severity of varying symptoms. In a caustic reply to "Welcome to Holland," with its touching depiction of disability as a strange but beautiful place full of quiet joys, one mother of an autistic child penned "Welcome to Beirut," equating the experience of parenting an autistic child with being dumped unceremoniously into the middle of a war zone. This hell is partly a matter of the autistic child’s extreme symptoms, which may include a tendency to spread feces on the walls, the ability to go many days without sleeping, in a state of manic high energy, an apparent inability to connect with or speak to another human being, and a propensity for random acts of violence. There is no treatment for the atypical neurological configuration that is autism, but one can educate an autistic child, administer medications, or make dietary or lifestyle modifications that may relieve a child’s depression, anxiety, and physical and sensory problems. No one has figured out what makes one treatment more effective than others for a particular person. To add to the frustration, many children are unresponsive to any form of treatment, but the only way to figure that out is to treat them for a long time and then give up. The treatments that are reported most effective are incredibly labor-intensive and vastly expensive. Numerous tales of "emergence" drive parents to fight toward an elusive miracle. So the chances are good that a parent will drive himself or herself nearly crazy, come to the verge of bankruptcy, and still have a child whose disturbing behavior cannot be resolved. Most parents can ultimately accept conditions that are untreatable and will devote themselves to treating those that are treatable, but autism betrays such neat Serenity Prayer divisions. The cliché about autism is that the syndrome impedes the ability to love, and I began this research interested in how much a parent could contrive to love a child who could not return that affection. Autistic children often seem to inhabit a world on which external cues have limited impact; they may seem to be neither comforted by nor engaged with their parents and are not motivated to gratify them. Tending to them can be gravely frustrating because the distinction between deficits of emotion and deficits of expression is often opaque. It is largely unknowable to what extent severely autistic people can hear and understand everything but cannot make themselves heard or understood, and to what extent they lack some domains of awareness entirely. The question of how we love people with autism is Pascalian. If they can receive affection yet are not given any, they doubtless suffer. If they 224 cannot receive affection yet are given much of it, that affection may be squandered—presumably the lesser of two evils. The problem is that emotion is not gratis. To love a child who does not evidently mirror your love exacts a more terrible price than other love. Yet most autistic children, despite the syndrome’s reputation, do develop at least partial attachments to others, at least eventually. There is another way to look at autism. Under the banner of neurodiversity, some people, many on the autism spectrum, have declared that autism is a rich identity, even if it is also a disability. The tension between identity and illness is common to most of the conditions in this book, but in no other instance is the conflict so extreme. Confronting desperately frustrated parents with the idea that autism is not an adversity can seem insulting. Other parents, however, frame their children’s difference in a more positive light. Neurodiversity activists lobby for their dignity; some believe they speak for the larger autistic community and reject treatments that might eradicate autism. Since such treatments do not exist, this is abstract philosophy, but the arguments bear on when and how to use the limited interventions we do have. ••• Betsy Burns and Jeff Hansen had planned to have just one child, but when their daughter Cece was almost two, Betsy decided she wanted another and became pregnant almost immediately. Going for amniocentesis, "I said to Jeff, ‘What would we do if we found out something was wrong?’" Betsy recalled. "And he said, ‘Just love the child.’ So we made a commitment to love a child with special needs, without even knowing that we already had one." Cece had been a good baby, happy to play by herself, though even as an infant she didn’t sleep much; the new arrival, Molly, was more demanding—but also more engaged. Over time, Jeff and Betsy worried that Cece was not talking. She never said milk; she gave them a cup. Their doctor assured Betsy that she was just an anxious first-time mother. Then Jeff, an English teacher, found a job at a Minnesota high school, so the family moved to St. Louis Park, outside Minneapolis. Betsy joined a mothers group when Cece was three and listened to the other women talk about their children. "I went cold. Something was terribly wrong," she said. Betsy requested an earlyintervention assessment from the local department of health. The evaluator said, "It’s troubling that she’s interested in my jewelry but not in my face." Then she said, "I don’t want you to think that any of this has to do with anything you and your husband ever did. I don’t want you to be frightened when I use the word autism." Jeff went to the public library 225 to check out books on autism. "I’ll never forget the stricken look of the librarian when I plopped down those books on the desk," he said. Because early intervention is a key strategy for autism, Betsy took Cece almost immediately to a public nursery school, where a few special-needs kids were in classrooms with typical children. Cece received speech therapy, occupational therapy, physical therapy, and music therapy. Nonetheless, her air of disconnectedness intensified, and she was self-injurious and sleepless. When Cece was four, they visited a local neurologist, who said, "If she’s not talking at all after this high-quality early intervention, she’ll never talk, and you should get used to that. She has serious autism." Cece has actually spoken four times in her life, and every time the words were appropriate to the situation. When Cece was three, Betsy gave her a cookie; she pushed it back at her, saying, "You eat it, Mommy." Jeff and Betsy exchanged glances and waited for their world to change. Cece said nothing more for a year. Then one day Betsy stood up to turn off the TV, and Cece said, "I want my TV." At school, three years later, she turned on the lights and said, "Who left the lights on?" Then one day a puppeteer visited Cece’s class; when he asked, "Hey, kids! What color is the curtain?" Cece responded, "It’s purple." The capacity to formulate and deliver these sentences suggests a tantalizing lucidity below the silence. "I think for her to speak is like a traffic jam," Betsy said. "The wiring keeps the idea from getting to the mouth." To have a child totally incapable of language is distressing but straightforward, but to have a child who has spoken four times is to labor in terrifying murkiness. If the traffic could clear enough for her to speak on those occasions, could the right intervention clear it altogether? You must remain agnostic while talking to Cece, aware that she may be picking up everything, or that your words may be gibberish to her. "I think she might be preliterate," Betsy said. "I believe that she has a wild intelligence somewhere. I worry that her soul is trapped." In childhood, Cece was assessed with an IQ of 50; her most recent therapist thinks she has no intellectual disability. When I met Cece, she was ten, and her favorite thing was to hold a lot of crayons and go across a piece of table and a piece of paper so she could feel the change in sensation where the paper ended and the table began. But for a brief time, she had suddenly started drawing faces, oblong, with eyes, a mouth, and hats. Then she stopped. "Something was coming through," Betsy said. "Just like something comes through when she says words." The first time Cece was administered anesthesia was for dental work, in early childhood. Betsy wondered whether it would be easier if she died from the anesthesia. "My mother said, ‘You just want to put 226 her out of her misery,’" Betsy recalled. "But Cece wasn’t usually miserable. I was. I was insane. When she came out of the anesthesia, I looked at that pale coloring, and her white-blonde hair, and those high cheekbones. And I realized, on some level, that this was going to be a new relationship. Because she was here for good." It’s unclear to what extent Cece recognizes people or cares about having them near. "Sometimes you feel like a piece of furniture," Betsy said. "Even when she’s snuggling with you, it can be just because she needs some deep-pressure input. Not ‘Oh, I love you,’ but ‘It’s warm; I can push against it.’ I don’t know if she recognizes me." Betsy wrote a novel, Tilt, about this period of her life; in it, she described typical days with Cece. "The behavior specialist has told us that if we give her food while she is tantrumming—and we know she wants food because she stands by the cabinet and bangs the heels of her hands against the wood—then we will be rewarding her for tantrumming and bribing her into acquiescence. But when the world is horribly disorienting, what woman doesn’t want to eat? She’s turning into a kind of luminescent orb of a child." In another passage, Betsy describes, "I return to her bath and she is happily floating in the tub, pushing small brown things around, little brown things that are disintegrating. Little brown things that are shit. Oh, Christ! Oh, God help me. I scream get out get out get out. But why do I think she can understand? She’s still smiling. I yank her out and her heavy self falls and slips against the side of the tub and then there is shit in her hair and shit on my hands and she is laughing. I can’t put her back in the tub because the shit has to go down the drain and I can’t rinse her off in the sink because she’s too big, so I put towels on the floor and soak washcloths in the sink and squeeze them over her head and watch the water run down her sides. And then I see the holes still open in her leg and think, Great, shit in an open wound." Jeff and Betsy had to arrange their house around Cece’s behavior. The shelves were six feet high so that she couldn’t reach them; the refrigerator was padlocked because Cece would do strange things with the food. Cece was frequently hospitalized because she had stopped sleeping or because she was hurling herself around. Doctors repeatedly suggested placement for Cece. Betsy fell into a catastrophic depression, for which she was hospitalized. "I wish hell were other people, instead of me," she later said. Toward the end of Betsy’s stay in the hospital, Jeff found Cece trying to strangle Molly. The social workers arranged a place for Cece to spend three months. "They didn’t tell me it was going to be permanent, ’cause they knew I would die," Betsy said. "On January first, 2000, she left our house forever." She was seven. 227 The facility director suggested that Betsy and Jeff wait at least a month before visiting, to allow Cece to become acclimated. While Cece seemed to be doing well enough, Betsy couldn’t bear it, and several weeks later, on Cece’s birthday, Betsy was hospitalized again. "Throwing something away that was part of her feels like throwing her away," Betsy said. "We’ve kept the padlocks and the high shelves as a little memorial to the time when Cece lived with us." Betsy belonged to a support group for mothers of disabled children, and the members lobbied for establishment of a group home in their community. When I first went to see Cece, she had been there two years. One of the other girls in the group home has cerebral palsy, and whenever her mother leaves, she cries. "I was talking to my sister and I said, ‘Cece doesn’t cry when I leave,’" Betsy said. "And she said, ‘Imagine what you’d feel like if she did.’" Parents of children such as Cece fear that their love is useless to their children, and they fear that their deficits of love are devastating to their children, and it’s hard for them to say which fear is worse. Three years after Cece’s placement, Betsy said, "I’m allowing myself to see that I hate visiting. I feel really guilty if I don’t see her on one of the prescribed days. A woman in my mothers group said, ‘Because you’re afraid if you don’t go one day, you’ll never go.’" When I met Betsy for lunch, she said apologetically, "I have to leave my cell phone on because Cece’s in the hospital and they may need to reach me." I said how sorry I was to hear it, that such times must be trying. "On the contrary," she said. "This is the one time when I know that it does her some good that I’m her mother. Mostly, I could be exchanged for any object with the same basic curves." Then Cece will show a break in her autism. "One day I was leaving and said, ‘Give me a kiss!’ and she rubbed her face up against mine. One of the workers said, ‘Cece’s kissing her mama!’ I didn’t know that she didn’t do that with other people. Not that it was what we’d call a kiss, but the air around her is really soft, so it serves as a kiss. Kissing her cheek is like kissing something so soft and dear that it’s almost not there. Kind of like her." Betsy once explained, "For her, sounds and sensations might be like a radio set between dials. I mean how the world gets in on you, with its buzzes and demands and hangnails and phone calls and gasoline smells and underwear and plans and choices. Cece loves to put on shoes that grip her feet the right way. Sometimes, in the spring, she would put on her boots just to feel them. She loves playing with the hair of African people. And she loves french fries, that whole crunchy, salty sensation. Who doesn’t? She loves salsa and things that wake up her mouth. It’s very fun for her to snuggle under things. She loves motion, going for 228 a ride and looking out the window. She used to like the soft skin on people’s elbows, and she’d follow behind them and hold on to that. If I think about her sensory issues, all I have to do is pull them back a little, and they’re mine. I love crunching leaves when I walk. The same is true when I walk on very thin ice, and it crackles. There are certain things that I’m afraid if I get too close to them, I’ll touch them for too long. My mother used to have a beaver coat that was so nice and soft. Then there are so many other things that I wouldn’t want to go near. Limousines give me the creeps, and the longer they are, the more they creep me out. But I was always trying to arrange words, and trying to understand how they marry each other; how they separate, how they allow each other to spill off. She defies it. She forces the intellect to let go. You retreat to an intuitive level because that’s the only way to read her." Though Cece does not have spoken language, she knows some signs and makes erratic use of more, please, time to go, outside, water, and juice. When Betsy arrives for a visit, Cece will bring out her coat and boots to indicate that she wants to go out. When she doesn’t want to go out, she takes Betsy’s coat and puts it firmly on the floor. "She does something; she knows it contains meaning," Betsy said. "We have to learn her language, which can be as confusing for us as ours is for her." It’s hard to find neutral territory for intimacy with Cece. Much of Betsy’s favorite time with Cece takes place swimming. This does, however, involve going into the public space of a swimming pool, where Cece is not capable of modifying her behavior. Betsy and Cece went to the pool at the St. Louis Park recreation center one day just after I met them. They arrived an hour before closing, when many families were there. The minute she arrived, Cece pulled off the bottom half of her swimsuit, defecated in the water, played with her feces, then ran around naked so that no one could catch her. One of the mothers screamed, "Contamination! Contamination!" Then all of the others began to yank their children out of the water. Lifeguards blew whistles and screamed, and Cece stood amid the chaos, laughing uproariously. I went with Jeff, Betsy, and Molly to visit Cece at the group home on her tenth birthday. We had brought a cake in with us, but for safety reasons, there were no candles. The presents were brought out of a shopping bag. Cece climbed into the shopping bag and stayed there. The only other thing she liked were the ribbons, which she kept twining and untwining. "This party, which so disrupts routine, is probably distressing to Cece," Jeff said. "I don’t know who we’re doing this for." Practically speaking, their purpose was to show the workers that Cece’s 229 parents loved her, and that the staff should take care of her. "What was going through her head when she saw us come in?" Jeff wondered. "‘Oh, there are those people again.’" Betsy described the constant assault of people proposing interventions. "They ask, ‘Have you tried vitamin therapy?’ ‘Have you tried auditory training?’ ‘What if it’s food allergies?’ We tried audio-integration training. We got those horrible vitamins. We did sensory integration. We did the elimination diet: we dropped wheat and corn and we did gluten- and dairy-free; we eliminated casein; we eliminated peanut butter. You’re hoping for change, but you’re torturing the kid. I end up feeling I have abandoned her; I haven’t done everything possible. If I went to Russia; if I chopped off my head. Flagellation, immolation. Go to Lourdes. I read about how some parents of kids with special needs have started a research center, done forty-hour-a-week therapy, and it’s really hard for those who can’t afford that, who wonder whether if we’d done all that, our kids might be normal. She is who she is, and I can recognize her parameters and try to know what’s comfortable for her and what isn’t. That’s all I can do." Cece periodically escalates into violence: throwing things at group-home staff, hurling herself on the ground, biting herself. Doctors have attempted to medicate away this misery; in the nine years I have known her, Cece has taken Abilify, Topamax, Seroquel, Prozac, Ativan, Depakote, trazodone, Risperdal, Anafranil, Lamictal, Benadryl, melatonin, and the homeopathic remedy Calms Forté. Every time I saw her, the meds were being adjusted again. A few years after we first met, Cece’s destructive behaviors were inexplicably escalating to the point that the staff at the group home felt unable to handle them. Betsy and a staff member took Cece to the emergency room. The nurse explained that they had to wait for the attending psychiatrist to complete the admission. "Okay," Betsy said. "But she’s not going to last out here." Ninety minutes later, Cece started hammering on the vending machines; another two hours after that, after Betsy was finally called in to speak to the therapist, their conversation was interrupted by the sound of desperate shrieking from the waiting room. Cece had tried to smash the window, and a security guard had carried her into a padded room. The nurse, an attendant, and the guard were all trying to keep her there as she hurled herself against the door; they called for two armed security guards to sit outside. "Wow, good," Betsy said. "That’s just what we need here. Pistols." Cece stayed in the hospital for eight days while the doctors fiddled with her medications, but they had little to try that hadn’t already been tried. They called the group home and said, "Is it okay if she has cereal? She seems to want ten bowls of it a day." When 230 she left the hospital, she had gained ten pounds, and no meaningful improvement in her behavior had been achieved. In the meanwhile, the family has also had to deal with Jeff’s bipolar illness, which has weighed heavily on other members of the family. Betsy has had to warn group-home staff that they can’t assume that Jeff will be sane at any given time. "I don’t want to demean or embarrass him. I love him. But those are calls I have to make, for Cece and not for Jeff. He thinks that if Cece had not been diagnosed with autism, the bipolar might never have been brought on. That’s naïve, but I think it about my depression, too. Loving Cece has done this to us." In the three years that followed Cece’s placement, Jeff was hospitalized twice for mixed manic episodes; Betsy was hospitalized three times for depression. "Maybe some people out there with a different brain constitution could have handled all this," Jeff said. "But the two of us ended up in the psychiatric ward." Betsy resisted dressing Cece in typical teenager clothes; overalls have been her uniform of many years now. At the group home, Cece and a severely autistic boy named Emmett became friends. Like Cece, Emmett was unremittingly distressed, sleepless, occasionally violent, and heavily medicated. Betsy walked into Cece’s room one day and found Emmett with her, his pants and diaper off—"exploring, shall we say"—as Cece ran back and forth by the windows. The caretaker was not supposed to leave them alone, but opportunity knocked when she was called to a crisis elsewhere. "Cece and Emmett are never going to think romance, but they might think closeness and pleasure," Betsy said. "They have such hard lives, and maybe they could find a little happiness that way." The staff at the group home, however, is unlikely to tolerate such a thing, and the risk of pregnancy is alarming to all parties. "People keep saying, ‘I don’t know how you do it!’" Betsy said. "It’s not like I can wake up and say, ‘I don’t think I’ll deal with it anymore.’" I replied that some people do just decide not to deal with it anymore and leave it up to the state. "Hearing that," Betsy said, "it’s as if somebody took a rake and dragged it through my guts." Molly came home from school one night and said, "How come God doesn’t take away Cece’s autism if God can do everything?" Jeff said, "Maybe that’s the way Cece’s supposed to be." Molly declared, "Well, God is you and you, and God is this table, and God is everything." And Betsy continued, "And God is Cece, too." Later, Betsy said to me, "On good days I perceive God’s light about her, and on bad days I beg for God’s understanding. That’s the thing about autism: it just is. Cece is the Zen lesson. Why does Cece have autism? Because Cece has autism. And what 231 is it like to be Cece? Being Cece. Because no one else is, and we’ll never know what it’s like. It is what it is. It’s not anything else. And maybe you’ll never change it, and maybe you should stop trying." ••• The word autism was used by the Swiss psychiatrist Eugen Bleuler in 1912 to describe a state in which "thought is divorced both from logic and from reality." For many years, what we now class as autism was a part of "childhood schizophrenia." In 1943, Leo Kanner, an Austrian psychiatrist who had emigrated to the United States, identified autism as a distinct disorder. He chose autistic because it underscored the extreme aloneness of the children he had studied. Kanner believed that autism was instigated by "genuine lack of maternal warmth," an idea further explored by the influential psychoanalyst Margaret Mahler. Imaginationism—the idea that mothers with perverse desires produced deformed or troubled children—had been long abandoned in relation to dwarfs and others with physical deformities, but it persisted for those with psychiatric diagnoses and fit quite naturally into Freud’s account of formative early experience. Kanner’s theory that unaffectionate parents made their children autistic led to the concept of the "refrigerator mother"—though he later allowed that autism might be inborn. It was Bruno Bettelheim, the influential and controversial midcentury psychologist, who later said, "The precipitating factor in infantile autism is the parent’s wish that his child should not exist." The researcher Isabelle Rapin, who has worked on autism since 1954, said to me, "We learned that it was an esoteric, rare, psychiatric disorder of highly intelligent but disturbed children. It was caused by mothers and treated with psychoanalysis, the goal of which was to break the glass ball so the butterfly could fly out. No one believed there were high-functioning autistics." Bernard Rimland, father of an autistic son, wrote Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior in 1964, proposing a fully biological explanation for autism. In 1965, parents created the National Society for Autistic Children; at the first meeting, they are said to have worn name tags in the shape of little refrigerators. "We mothers would have liked an apology," said Eustacia Cutler, mother of the prominent autistic intellectual Temple Grandin. "We deserve it. And so do the fathers." The Austrian pediatrician Hans Asperger published a case study in 1944 of four children similar to those monitored by Kanner. However, while Kanner became one of the most influential voices in psychiatry in the English-speaking world, Asperger’s work remained obscure and was available only in German until 1981. Like Kanner, Asperger believed 232 that his patients were capable of great improvement. He also recognized their strengths, which often included creativity, a highly developed taste in art, and insight beyond their years. Asperger believed that the condition he had documented was an affliction of upper-middle-class people who pressured their children and then withdrew when their children disappointed them. Children with Asperger syndrome are highly verbal early in their childhood, though they often use language in idiosyncratic ways. They generally have normal cognitive development and are interested in, though somewhat incompetent at, human interaction; a website put up by a young man with Asperger’s explained that empathy is "successfully guessing what another person is feeling." They often lack basic social skills; Asperger coined the term little professors to describe his patients. They tend to be more aware of their condition than are people with classic autism, and this leads many into clinical depression. They are often more comfortable responding to communication than initiating it. The American Psychiatric Association is currently moving to eliminate the diagnosis; people with Asperger’s would simply have autism spectrum disorder, a category that would encompass people with severe autism and people with other related diagnoses, such as childhood disintegrative disorder. This shift acknowledges that it is almost impossible to draw clear dividing lines among these diagnoses. Though some speak of those with language as having high-functioning autism, people with extreme social deficits are not always helped by having a large vocabulary. While many autistic people may seem disengaged, individuals with Asperger syndrome may seem hyperengaged; they may stand too close and talk incessantly about obscure subjects. One researcher described interviewing someone with Asperger’s who seemed to her to be just fine—they had a lovely conversation. The following week, they had the same conversation. A week later, they had the conversation again. One clinician told me about a patient who at age ten ran into the street in the middle of traffic, nearly getting run over and causing an accident. His mother said, "But I told you to look both ways before you step into the street!" He said, "I did look both ways." A psychiatrist I met described a patient who was a math genius, IQ 140, fully verbal, but socially disabled. When the pretty woman at the counter at McDonald’s asked what he’d like today, he said, "I’d like to touch your crotch, please." He was completely befuddled when the police were called; he had answered her question and said "please." Prominent voices among adults on the spectrum—such as Temple Grandin, an author, professor, and designer of cattle-handling equipment, 233 or Ari Ne’eman, founder of the Autistic Self Advocacy Network—function enormously well and are interpersonally competent. Still, both have told me that it is a learned skill, that the social interaction we enjoyed was based on endless study. Grandin has written, "My mind works just like an Internet search engine that has been set to access only images. The more pictures I have stored in the Internet inside my brain the more templates I have of how to act in a new situation." Many people on the autism spectrum first learn to smile and to cry as works of theater. John Elder Robison, author of the autobiography Look Me in the Eye, describes hours spent memorizing human expressions so he could interpret or produce them. "I didn’t even understand what looking someone in the eye meant. And yet I felt ashamed, because people expected me to do it, and I knew it, and yet I didn’t. As I’ve gotten older, I have taught myself to act ‘normal.’ I can do it well enough to fool the average person for a whole evening, maybe longer." Every autistic person has a unique pattern of weaknesses and strengths, and a person can be extremely competent in one area, but quite incompetent in others. At the same time, the most impaired end of the spectrum is so different from the least impaired that it is sometimes hard to accept the persistent metaphor of the spectrum structure. When I was in my twenties, I befriended an autistic man. He had not spoken until he was seven, and he laughed at things that weren’t funny and ignored social niceties. He was rational, methodical, and a lightning-fast mental calculator who earned a fortune in fast stock trades. He had a photographic memory and had assembled a wonderful art collection. When I visited him one weekend, he put a single Philip Glass recording in the CD player and—as though Philip Glass weren’t repetitive enough—left it playing constantly over the entire weekend. On another occasion, when I mentioned that I was going to Los Angeles, he volunteered detailed directions for every place that I was going; he explained that he had become fascinated by the city and had spent four months driving around it for ten hours a day. We fell out after he refused to own up to something hurtful he had done. I had assumed that his failure to comply with social norms was an affectation; only later did I understand that our friendship had been undermined by a neurological condition that was not subject to being fixed. ••• The poet Jennifer Franklin found a muse to equal her powers of expression in her severely impaired autistic daughter, Anna Livia Nash. For her poems about Anna, Jenny draws on the Greek myth of Demeter losing Persephone, who half vanishes from her life, bringing winter to the world as an expression of outrageous loss. She wrote: 234 I was the last to hear you Scream because I did not Want it to be true. You cried Out in torment and the sun Kept shining through the leaves. That wasn’t right. ..... Everyone who wasn’t your mother Tried to comfort me. I vowed To remain unlaughing. Even in the stunned novelty Of devastation, I didn’t realize How easy it would be To keep this promise. Anna played with her toys oddly: she’d study each one carefully when she got it, almost as though she were cataloging it, and then she’d put it behind her. She would wake up in her crib and make little chirping noises to herself. She never pointed. Jenny called the pediatrician repeatedly, and he kept telling her to stop worrying. Just before Anna turned two, Jenny joined a Mommy and Me class, and on the first day Jenny noticed that the other children were interacting with her more than Anna ever had. "I suddenly realized that I was constantly trying to put on a show for her to get her attention," Jenny said. She took Anna back to the pediatrician, who once again said that Anna seemed fine, but when Jenny said, "She’s not talking as much as she used to," his demeanor changed and he sent her immediately to a pediatric neurologist. The clinician at Cornell University Medical Center diagnosed her with PDD-NOS—"pervasive developmental disorder not otherwise specified" (which critics claim stands for "physician didn’t decide")—explaining that Anna showed too much affection to receive an autism diagnosis. "Do not leave this office today and look up autism. This is not what this is," the doctor said. Jenny describes this half-diagnosis as a "grave disservice." Jenny’s husband, Garrett, is an oncologist and was used to death and illness. Jenny, who had always assumed that everything would go 235 according to plan, felt completely blindsided. As she wrote in one of her poems, "I did not / Only lose you in an instant; / I abandoned the infinite possibilities / Of what you might have become." She set about researching autism education and got Anna qualified for early-intervention services. In addition, Jenny and Garrett paid a consultant $200 an hour out of pocket for four hours of behavioral therapy every week; the consultant also trained local therapists who were paid by the state to work with Anna. Jenny and Garrett sold a vacation house they had in Massachusetts and gave every penny to therapists. Jenny learned with the therapists for twenty hours a week. Anna had tantrums that could last forty-five minutes, and Jenny’s arms were covered in bruises and scratches. Anna seemed to be responding to the structured, intensive behavioral intervention at home. New York City did not yet have schools that functioned on this system, but at four, Anna was accepted at Reed Academy, a school in Garfield, New Jersey, with just twenty-four students and twenty-six teachers. Garrett’s work kept him in New York, but Jenny moved to New Jersey so that Anna could attend. Reed uses applied behavior analysis, or ABA, a system originally developed by the neuropsychologist O. Ivar Lovaas at UCLA. Lovaas used a mix of positive reinforcement and harsh physical punishment, much like animal training; most ABA programs now use only incentives. Whenever a child does something desirable, he is rewarded; when a child is doing something undesirable ("stereotypies," such as head-banging, arm-flapping, rocking, or producing high-pitched noises), he is interrupted and steered toward desired behaviors. For each positive act, the child receives a sticker on a token board, and when a certain number of stickers accumulate, the child gets to choose a treat. At seven, Anna had some language, but used it rarely. When she started babbling incoherently, her teacher interrupted her with commands—telling her to clap, turn around, or touch her head. When she responded appropriately, it seemed to break the inner mechanism of the babbling, and she got a sticker. Then she had to answer questions, such as "Where do you live?" "How old are you?" "Where do you go to school?" Sometimes her teacher would make her read, sing, or do a lesson, all also rewarded. When she reached a full complement of stickers, she had five minutes to do whatever she wanted, with the proviso that she not lapse into stereotypy again. Sometimes she asked for a snack; sometimes, a piggyback ride. Jenny kept up the system at home. "The only time that I don’t do it is when she is in her room before bed," she said. "After I’ve said good-night and read her ten books, if she’s babbling in there, she’s babbling." When I met Jenny, Anna was completing her third year at Reed. The improvements had been huge. She no longer engaged in self-injury and 236 could tolerate visiting the supermarket. She had previously scratched Jenny and pulled her hair daily, but now she did so about once a month. She used her speech more readily. Jenny was relieved that Anna seemed to enjoy these developments. "It was the hardest thing in the world for me to see her cry and tantrum with the subpar ABA at home in the early days," Jenny said. "But she never cries at school. When it’s done properly, it’s not mean." Anna comes home at four, and Jenny works with her nonstop until nine, using the token boards and the rewards system. When Anna goes to bed, Jenny, too hyped up to sleep, soothes herself with reading, writing, and movies. "I stay up almost all night and do things I can do alone in the dark, where I don’t have to see people going about normal activities that I can’t really be a part of." Jenny wakes at 5:00 a.m. to make breakfast for her daughter and does drills with her until the school bus comes. Exhausted, Jenny climbs back into bed until four o’clock rolls around again. "I was so ashamed at first, but now I’ve come to accept that this is what I have to do in order to survive." Jenny has been depressed, overwhelmed, even suicidal. "But I can’t give up on my child. She didn’t ask to be born; she didn’t ask to have this problem; she’s completely vulnerable. If I don’t take care of her, who’s going to do it?" At the beginning of Anna’s time at Reed, Jenny hoped Anna would become "indistinguishable from her peers" and be mainstreamed, but that has come to seem unlikely; indistinguishable is the catchword held out to parents over and over and is seldom realistic. Anna is teased for her difference; ironically, her imperviousness to ridicule is what marks her as unready for regular schooling. "I’d love Anna Livia to get to the point where she even knows she’s being made fun of," Jenny said. Jenny had had terrible morning sickness in the early stages of her pregnancy and had considered having an abortion. "Difficult as it is to admit this," she said, "there are times when I’ve thought, ‘Would everyone have been better off?’" She described a trip to France when she visited the Musée de Préhistoire in Les Eyzies-de-Tayac. "I saw these bones of a mother holding a baby. They’d been buried in that unusual pose, and archaeologists were supposed to have been confused by it, but I wasn’t. I thought, ‘It’d just be so nice for something to just happen, if Anna Livia and I could just disappear like that.’ But I would never do anything to hurt her." ••• The incompetencies associated with autism sometimes cluster into a terrifying level of pain—pain for the person with autism, and pain for those who attempt to care for that person. Scott Sea, father of an 237 autistic child, described this experience in Slate: "When you see the balled-up pants and diaper on the floor, you know you are too late. A bright red smear across the door, the molding, the wall. Turn the corner and the bedroom is a crime scene. An ax murder? In fact, it is only your daughter at her worst. Shit everywhere. Splashes of blood glistening like paint, black clots, yellow-brown feces, and a three-foot-in-diameter pond of vomit that your daughter stands in the middle of, a dog-eared copy of Family Circle in one hand, reaching for the TV with the other. She is naked except for stockinged feet, blood soaked up to her ankles. Hands dripping, face marked like a cannibal, she wears an expression of utter bewilderment. A bloody handprint on the square of your back as she balances herself when you roll down her sopping stockings. In the warm rain of the shower she proceeds to dig. She is excavating for what remains of the impacted stool, hard as a French roll. The behaviorists, the gastroenterologists, the living-skills experts, all suggest their strategies and therapies and videos and diets and oils and schedules. Certainly she knows what you want—appropriate toileting. And there are occasions when she does just that. Goes in, sits, finishes. This, maybe 5 percent of the time. Some huge, softball-size stool discovered in the toilet bowl. You shout for each other and gaze in wonder as at a rainbow or falling star. That’s how excited you are." Fred Volkmar, head of the Child Study Center at Yale, tells of one of his patients, a twenty-fiveyear-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, 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 238 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 239 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 fouryear-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 240 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 241 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 242 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 243 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 244 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, 245 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 246 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 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." 247 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, 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. "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." 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. 248 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. 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.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 249 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. Observing that Sue was upset, he’d type, 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." ••• 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 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 250 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, 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 251 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 nearidentical 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 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 252 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 253 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 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 254 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 255 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 Ceaueşcu-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 256 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, 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...
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