Sibling responses can rely on minimizing the disability, or on celebrating it, or on some combination of the two. Which mode gets used has something to do with the dynamics of a given family, and something to do with the severity of the affected person's deficits. It is easy to focus on the tales of people with DS who are triumphantly high-functioning, whose parents take great pleasure in how smart and successful they are within the parameters of the illness. Given how much less these children are likely to attain than typical children, however, to universalize intelligence and achievement as a measure of worth is in some ways to deny who they are. They are not so bright and can't accomplish so much by general standards, but have real virtues and are capable of personal fulfillment. Many parents of people with DS began their conversations with me by saying how super-high-functioning their children were, and I began to wonder how it was that I saw only parents of such high-functioning kids. When I began talking to their children, I found that some of them were extraordinarily intelligent and advanced given their condition, and that many others had a few things at which they excelled, from which their parents cheerily generalized. The parents' perceptions of high functioning frequently outstripped the children's actual level of accomplishment.

Without exception, these parents reported that their children tried hard to please them. Stubborn, intractable when stuck on an idea, the children nonetheless had an eagerness, not as typical of the other disorders examined in this book, that was infinitely moving to their parents. Down syndrome kids are famously sweet-natured, but their less advertised characteristic is that they are troupers. hard to please them. Stubborn, intractable when stuck on an idea, the children nonetheless had an eagerness, not as typical of the other disorders examined in this book, that was infinitely moving to their parents. Down syndrome kids are famously sweet-natured, but their less advertised characteristic is that they are troupers.

Adam Delli-Bovi is at the lower end of Down syndrome function and is also diagnosed on the autism spectrum. At twenty-six, he had a mental age of between four and five, and to meet him after seeing Jason Kingsley speaking at Barnes & Noble made it difficult to believe they had the same condition.

Adam's mother, Susan Arnsten, was twenty-two and living in Ithaca, New York, when she realized she was pregnant: "It was the late seventies, people were into alternative lives. I knew I wanted children, so since I wasn't doing anything else, I let it happen." Her parents hastily arranged a wedding for her. Her new husband, Jan Delli-Bovi, had a nephew with Down syndrome, but it never occurred to them to do genetic screening. Adam was diagnosed the day after he was born. "There wasn't a single solitary moment when I considered giving him up for adoption," Susan said. "I started looking, too quickly, at how I could use this challenge for something good. I didn't give myself time to grieve. My parents thought it was a tragedy, so I had to make it into just the opposite. I was a very young twenty-two." Susan applied for federal supplemental security income (SSI) for Adam. When the first check came, Susan used it to enroll in a graduate-level course at Cornell called Learning and Children. She started volunteering in a daycare center and became involved with EI.

Susan's research and learning were critical. "A regular kid will initiate. They'll learn in spite of anything you do," Susan said. "But with Adam you had to kind of bring it to him, and he'd meet you maybe a quarter of the way." Shortly after his first smile, a physical therapist noticed that he was having strange spasms, and Susan took him in for a brain scan, which showed constant myoclonic seizures, which can cause severe retardation. Susan and Jan gave Adam six weeks of shots of ACTH, a stress-related hormone. They went to see a neurologist because Adam seemed to be suffering so badly with the shots. The neurologist said, "If any healing is going to come, it's going to come from Adam, and really the best thing you can do is pray."

"There was a very strong commune in this town called the Family," Susan remembered. "They all had these names that their leader had given them, like Freedom and Grateful and Sought and Ocean and Sojourn. They started doing healing circles for us. They had this wonderful land with this wonderful pond where we would hang out naked with our babies and everybody would swim and talk. They came up with ideas about how his soul was trying to make up its mind whether to be in the world. Even as a newborn, you have to commit to engage in the world, and he didn't seem to have made up his mind when he first arrived here." land with this wonderful pond where we would hang out naked with our babies and everybody would swim and talk. They came up with ideas about how his soul was trying to make up its mind whether to be in the world. Even as a newborn, you have to commit to engage in the world, and he didn't seem to have made up his mind when he first arrived here."

When Susan took Adam back to the doctor, the seizures were gone. However, Adam had persistent upper-respiratory infections, and he's largely deaf in his left ear. His vision was weak and one of his eyes wandered. For a while, he wore an eye patch, and later, strong glasses. When Adam reached his first birthday, Susan's mother bought him a dog puppet, and he loved it most of all his things. "Then he started developing all these weird behaviors," Susan said. "He really liked to hold things and stare at them. So I'd be really mean. I would take the puppet and put it across the hall. Boy, he would crawl, crawl, crawl, and he would grab it. I would take it away and he would go after it again. Then I started putting the puppet in clear boxes so he could see it in there and would have to figure out how to take it out."

Susan and Jan conceived another baby-"so Adam would have company," Susan said. Taciturn, suspicious, beautiful, and full of intensity, Teegan is fiercely loyal to her brother. Adam was in the public school system in his early years, and Teegan was constantly defending him. "If teachers didn't understand him, I would try to make them understand," she said. "I used to go into his classroom in the morning and spend time there until I was almost late for my own class. It was much more upsetting to me to see him teased than it was for him to be teased. A lot of the time, I don't think he even noticed." Teegan always brought her friends home to see her brother. "I used how they interacted with him as a measure of their character."

By this time, Susan and Jan had split up, and Susan was doing her best to place Adam in a new school. "The flip side of early intervention is, it sets up expectations and pressures," she said. "You see all these wonder kids, like Jason Kingsley, or that one who used to be on Life Goes On Life Goes On. Today, I think Adam has reached his maximum potential, but at that time, I felt maybe he wasn't doing as well as the others because I wasn't doing as much as other parents. In this little cohort of kids with Down's here in Ithaca, he was the slowest one." Susan had gone along with inclusion because it was what everyone else was doing, but Adam knew he didn't fit in; one day he removed all his clothes during math class. "Kids need to be in places where they feel successful, where they have peers," Susan said. "Yes, they need role models, but they also need to be role models." Her parents found a summer camp for children with moderate to severe mental retardation, where Adam has gone every year since, and where his relative level of functioning is sufficient that he can help others. for children with moderate to severe mental retardation, where Adam has gone every year since, and where his relative level of functioning is sufficient that he can help others.

Susan had grown up in a largely nonobservant Jewish household. She had an affection for Judaism as a culture, but limited knowledge of the Jewish faith. One day, Teegan said she wanted to learn more about Judaism. Susan went to the nearest temple to sign Teegan up for Sunday school and began to bring Teegan and Adam to services. "He loves routine," Susan said. "He loves schedules, ritual, the singing. Judaism really works for us because it has struggling and mystical stuff built right into it." Of the many nuggets of Jewish philosophy she quotes, she rests particularly on the Talmudic notion, drawn from Exodus 37:9, that God exists in dialogue. "In the Torah, they describe building this huge tabernacle out in the wilderness," she said, "and on top of the vehicle that carries the tablets, they put two angels facing each other, because that is where God exists, between people. The day Adam was born, my life became purposeful, and it has kept purpose ever since. God exists between us. I knew that soon after he was born, but Judaism gave me a vocabulary for it."

Adam managed to memorize enough Hebrew for a bar mitzvah. Shortly thereafter, Susan met William Walker Russell III, a WASP sound engineer with a recording studio in an old church, and when he saw her interacting with Adam, he fell in love with her. He remembered, "Susan said, 'I'm a mother of two children; one has Down syndrome and is going to be with me forever. It's never going to be just the two of us.'" Susan and Will married six months later. "Adam started wanting to dress like me early on, and it was incredibly complimentary to me and incredibly embarrassing to go out in public," Will said. "It's like, I'm wearing jeans, a brown leather belt, and a white oxford button-down shirt from the Gap. He's wearing exactly the same thing. I figured I was in."

Susan and Will's marriage coincided with the onset of adolescence for Adam. Adolescence is a challenge when it hits any boy of fourteen, but it's even harder for someone who is in many ways four and a half. "Will experienced the testosterone stage," Susan said. "Adam would all of a sudden decide to wreck the place. He would pull the fire alarms." Will said, "Adam was doing some testing of personal power. When a four-year-old misbehaves, you pick the kid up and you take them to their room. Adam is not portable to Susan. So she developed a way of talking, showing unbelievable patience, and would spend whatever time it took negotiating. One time, he was kicking and spitting. I came behind him in a loving restraint, picked him up, and put him upstairs in his room. I remember the look on Adam's face-what just happened? That behavior stopped pretty quickly." his room. I remember the look on Adam's face-what just happened? That behavior stopped pretty quickly."

Susan loves to dance, and she took up contact improvisation, which grows from the belief that dance is a way of communicating. A collective called Dance New England puts on a weekly session where people can dance barefoot and freestyle in an alcohol-free, welcoming environment. Susan had long realized that most of her communication with Adam was nonverbal, so this community had particular resonance for her. "Other people with Down syndrome are very social, very outgoing," Susan said. "He is not so much. A lot of the reason that I like the dance forms that I do is it gives you a way of interacting and connecting with people without having to talk." Every summer, the collective would rent a place in Maine on a clothing-optional lake for two solid weeks of dancing, with a strong emphasis on community-building and volunteerism. Adam worked for two hours every day in the kitchen. "Everybody wears purple," Susan said. "It's a very nice, affirming place for us. It's a time when everything Adam has learned during the year coalesces, and it prepares him for the next year."

When Teegan was in ninth grade, she contracted mononucleosis and spent a long stretch at home, cared for by her mother. "One day, out of the blue, she said to me, 'You know that I'm always going to have a place for Adam wherever I live,'" Susan recalled. "When she said that, I started thinking about a team of support around Adam, that she is a willing part of that team. She came to that on her own." To Teegan, it had always been obvious. "In some ways, I was always the older sister," she said. "Sometimes I was annoyed about having to take care of him on a specific night. But I never wished for a life without him. His thanks is in the form of love, more than gratitude. I know he loves me, which is enough. I wouldn't trade it for the world."

Will struggled at times with existing family dynamics. "The primary duo is always Susan and Adam," he said. "If Susan and I are talking and Adam interrupts, our conversation stops, and there have been times when I have resented that." The biggest tension when Will joined the house was sound. Adam's greatest pleasure in life is Broadway show tunes. Shortly after I met Adam, he offered to sing for me. His sound is an enthusiastic monotone hum, like an amplified refrigerator. He usually sings along to his favorite recordings, to which he listens, over and over, at high volume. Will is a sound engineer whose life is in his ears. Adam eventually agreed not to sing in the car when Will was driving; Will figured out how to deal with sound in the house. When I asked Teegan to describe life with Adam, she said, "Slow." Will concurred. "It's about Adam time. Just like when you're hanging with a four-year-old, you give up your agenda. I've learned that no one says that nut has to be tightened in thirty seconds. If it's tightened in five minutes, it's all the same. Adam is my Zen master." you give up your agenda. I've learned that no one says that nut has to be tightened in thirty seconds. If it's tightened in five minutes, it's all the same. Adam is my Zen master."

Adam completed vocational school, then entered a work program, affixing labels and stamps, and sealing envelopes; when that didn't work so well, he started volunteering in a soup kitchen, where he puts out the salt and pepper and rolls the silverware in napkins. "Being helpful is one of his values," Susan said. "In fact, one of the other Down's mothers said to me that she told her son that she would take him to something but he had to be like Adam. 'Adam's always smiling and he listens to his mother, and if you agree to be like Adam, I'll take you with me.' So whenever he started being a little disruptive, she said, 'Are you being like Adam?' It worked. Adam being a role model. For a kid who is way smarter than him."

Adam is not allowed any TV or videos on the Sabbath, so he listens to CDs of Broadway musicals on headphones. At dinner on Friday night, he blesses the bread. He does the ritual washing of hands as well. Then he takes a long mineral bath; he loves baths, but because he is prone to fungal conditions of the skin, he can't take them the rest of the week. "Toileting is still an issue, so we have him on a schedule," Susan said. "I would like to transition him to listening to his body more; he has accidents sometimes. We deal with his mental age."

I was curious about what mental age mental age actually meant. "If you think about the level of supervision you might give a six-year-old, or what a six-year-old could do, that's about what Adam needs," Susan said. "It might be more like five, in some ways more like four. Because six-year-olds can generally read more than he can and make phone calls and know what to do in emergencies. If the house were on fire and he was watching TV, he wouldn't leave. Maybe when it got very, very hot. He knows about walking when the traffic light says 'walk,' but he doesn't know to look around and see that a car might be turning. If we're leaving Adam in someone's care, I say, 'Imagine someone who's been five years old for ten years.' He's Mr. Helpful around the house; he does all these things that a five-year-old would never be five long enough to learn." Teegan added, "If you gather a whole group of six-year-olds together, they'll have a much wider range of ability than any single six-year-old. So one might have grown up with professional parents in the city, so he knows about computers. Another grew up in the country and knows all kinds of wild plants, and how to find their way around in the woods. If you keep somebody at a six-year-old level for long enough, they'll expand laterally. That's what he's been doing." actually meant. "If you think about the level of supervision you might give a six-year-old, or what a six-year-old could do, that's about what Adam needs," Susan said. "It might be more like five, in some ways more like four. Because six-year-olds can generally read more than he can and make phone calls and know what to do in emergencies. If the house were on fire and he was watching TV, he wouldn't leave. Maybe when it got very, very hot. He knows about walking when the traffic light says 'walk,' but he doesn't know to look around and see that a car might be turning. If we're leaving Adam in someone's care, I say, 'Imagine someone who's been five years old for ten years.' He's Mr. Helpful around the house; he does all these things that a five-year-old would never be five long enough to learn." Teegan added, "If you gather a whole group of six-year-olds together, they'll have a much wider range of ability than any single six-year-old. So one might have grown up with professional parents in the city, so he knows about computers. Another grew up in the country and knows all kinds of wild plants, and how to find their way around in the woods. If you keep somebody at a six-year-old level for long enough, they'll expand laterally. That's what he's been doing."

Susan has stopped trying to resolve the contradictions that her life with Adam tosses up. "When he was born, my big thing was I wanted him to be able to communicate. Now I know that even people who don't talk can communicate." One birthday, Susan had bought Adam a black felt hat like the ones worn in with Adam tosses up. "When he was born, my big thing was I wanted him to be able to communicate. Now I know that even people who don't talk can communicate." One birthday, Susan had bought Adam a black felt hat like the ones worn in Fiddler on the Roof Fiddler on the Roof. She had bought him a Broadway-compilation CD, and Adam's favorite song was "One," from A Chorus Line A Chorus Line. At the end of a day in Ithaca, Adam said he had something to show me, and I sat down in the living room. He made Susan find her own hat, he put on the CD, and the two of them did a little Michael Bennett pastiche of the dance from A Chorus Line, A Chorus Line, lifting the hats, twirling around, kicking at the right moments. Somehow, Adam had learned the moves, and with only minimal prompting from Susan, he did the whole thing, a little awkwardly but with charm. Looking at this private cabaret, I was struck by Susan's insistence on dance as a means of communication, and I thought that what the whole household had achieved was intimacy. Susan's genuine belief that happiness was a fluid concept seemed to fill the room with love. lifting the hats, twirling around, kicking at the right moments. Somehow, Adam had learned the moves, and with only minimal prompting from Susan, he did the whole thing, a little awkwardly but with charm. Looking at this private cabaret, I was struck by Susan's insistence on dance as a means of communication, and I thought that what the whole household had achieved was intimacy. Susan's genuine belief that happiness was a fluid concept seemed to fill the room with love.

Some three-quarters of intellectually disabled people in the United States live with their parents. "The natural desire of parents to nurture their children during their growing years should be especially encouraged for children whose progress is measured in centimeters," one study notes. "Whenever families decide that they can no longer bear the burden of care, the transition to a residential placement should be facilitated. Empowerment of people with disabilities cannot ignore those who provide day-to-day care." The likelihood of placement of younger children with DS depends on the severity of their disability, the extent to which their behavior disrupts the household, and the capacity of the parents' relationship to withstand the stress of a disabled child. Siblings may need attention their parents cannot muster when someone needier occupies focus; those same siblings may be deeply distressed by the placement of a brother or sister, feeling vulnerable to exile themselves.

One study found that almost 75 percent of parents reported feelings of guilt after placement; half said they felt guilt "constantly" or "every day." Many feel that placement reflects their failure as parents. When the child who has been placed comes home to visit, families often feel glad and stressed; when the child goes back to his residence, they feel sad and relieved. They feel worse if their child is in a small facility, even though those are usually more humane; small facilities resemble home, and the similarity forces parents continually to reassess their decision to send their child away. When care is provided by a small staff, some parents become competitive with them. Parents most often report that placement has made their functional lives easier, but not their emotional lives. Nonetheless, they seldom bring back children whom they have placed; the tendency is to stick with whatever decision you have made. Investigators note parents' positive feelings toward placement after they have placed their child; they likewise note the positive feelings of parents who have decided to keep their children at home. To some degree, people who will be happier with a placement are more likely to place their children, and people who will be happier with their kids at home tend to keep them at home. Ultimately, this is also a matter of resolving cognitive dissonance: people adjust their attitudes to fit their decisions so as to avoid internal discord. placement has made their functional lives easier, but not their emotional lives. Nonetheless, they seldom bring back children whom they have placed; the tendency is to stick with whatever decision you have made. Investigators note parents' positive feelings toward placement after they have placed their child; they likewise note the positive feelings of parents who have decided to keep their children at home. To some degree, people who will be happier with a placement are more likely to place their children, and people who will be happier with their kids at home tend to keep them at home. Ultimately, this is also a matter of resolving cognitive dissonance: people adjust their attitudes to fit their decisions so as to avoid internal discord.

Placement is a process, not an overnight decision. Preliminary separations, through respite care and day or weekend programs, may allow parents to explore how placement will feel; they may, equally, allow parents to delay placement by alleviating some burden of care. In addition to their gradual psychological adjustment to placement, parents face pragmatic challenges in researching appropriate facilities and figuring out how to apply for the preferred ones. One person who has worked on this topic described how a mother told him, "I could never put my child in one of those those places!" Two years later, she placed him in the exact setting that had so offended her. "Calling the Regional Center was the scariest phone call I ever made," one mother said. Many people with DS are placed between eighteen and twenty-one, at the age when typical children are moving out of their family houses; some experts feel that creating a life course that mimics the stages for typical people is advantageous. places!" Two years later, she placed him in the exact setting that had so offended her. "Calling the Regional Center was the scariest phone call I ever made," one mother said. Many people with DS are placed between eighteen and twenty-one, at the age when typical children are moving out of their family houses; some experts feel that creating a life course that mimics the stages for typical people is advantageous.

The proportion of children and youth in institutions has gone down by about three-quarters, but the total number of people in institutions has gone up, because life spans have lengthened. Though big state institutions still exist in thirty-nine states, they have mostly given way to a vast array of smaller, more intimate, community-based care facilities. More than half of parents visit only one facility and place their children there, sometimes for geographic reasons, but often without regard to the range of quality of such facilities. In 2011, the New York Times New York Times reported hideous abuses at residential facilities throughout New York State. "Employees who sexually abused, beat or taunted residents were rarely fired, even after repeated offenses," the paper stated. "State records show that of some 13,000 allegations of abuse in 2009 within state-operated and licensed homes, fewer than five percent were referred to law enforcement. One obstacle complicates any effort to take action against employees accused of abusing those in their care: The victims often cannot talk or have extreme cognitive impairment. reported hideous abuses at residential facilities throughout New York State. "Employees who sexually abused, beat or taunted residents were rarely fired, even after repeated offenses," the paper stated. "State records show that of some 13,000 allegations of abuse in 2009 within state-operated and licensed homes, fewer than five percent were referred to law enforcement. One obstacle complicates any effort to take action against employees accused of abusing those in their care: The victims often cannot talk or have extreme cognitive impairment. Local law enforcement officials point to this to explain a lack of prosecution of cases. But another factor seems to be at work. In many cases, the developmentally disabled do not have families actively involved in their lives, and, hence, no advocates." These abuses cast a long shadow over the experience of families who are grappling with placement decisions. Though spending on housing and treatment for people with intellectual disabilities in the United States averages $380.81 per person per day, the actual amount fluctuates widely from state to state and even from county to county. Local law enforcement officials point to this to explain a lack of prosecution of cases. But another factor seems to be at work. In many cases, the developmentally disabled do not have families actively involved in their lives, and, hence, no advocates." These abuses cast a long shadow over the experience of families who are grappling with placement decisions. Though spending on housing and treatment for people with intellectual disabilities in the United States averages $380.81 per person per day, the actual amount fluctuates widely from state to state and even from county to county.

Where families used to be counseled to separate themselves emotionally from the children they placed, many now remain deeply involved; placement out of the home is not placement out of the family. Most visit monthly at least and speak on the phone more frequently. Many parents want to be present to effect a progressive transition to avoid "transfer trauma." "The time to have a young adult go into a group home is when you're still around," Elaine Gregoli advised. "I hear horror stories of parents who have forty- and fifty-year-olds at home. Then the parents die, and these forty-year-olds have to go into a new environment, where they're asked to do things that they were never trained to do." Many retired parents who still care for their DS children describe them as a comfort in a world where many older people are isolated and purposeless. Nevertheless, most people with DS will ultimately need some kind of outside care unless their parents outlive them, or siblings or friends take over; few are able to live fully independently. About three-quarters of people with DS who are still at home when their parents die are moved to residential placement.

Some people with DS thrive at home and others thrive away from home, which reflects the personalities of the people with DS and the nature of their families. Living at home means a familiar environment, and, ideally, more love. Adults with DS who live with their parents may, however, suffer lack of contact with peers and considerable loneliness. As they grow older, such people have fewer things to do outside the house, and they tend not to learn skills for building friendships. One father in rural Pennsylvania, a construction worker, talked about how happy his daughter had been through high school; she had been a cheerleader and a member of the homecoming court, surrounded by friends. Once she graduated, however, her classmates moved away to college or got on with their busy lives, and he ended up taking her with him on his truck every day. She worked at Walmart a few hours a week and had no social life at all. She lived for two Arc dances a year. In one recent study, only about a quarter of adults with DS who lived at home could name a friend who was not part of their parents' social network. at home could name a friend who was not part of their parents' social network.

Alongside the memoirs written by parents are, increasingly, those written by people with Down syndrome, who constitute a vital self-advocacy movement. More than eight hundred self-advocacy groups now exist in the United States alone, and members address themselves to legislators, caseworkers, and parents. Many of them are organized under the banner of People First, an international self-advocacy organization that began in Sweden in 1968. In 1973, the first North American meeting took place in Vancouver, where "mentally handicapped" people gathered at a conference called May We Have a Choice. People First operates in forty-three countries and has an estimated membership of some seventeen thousand. Their website explains, "We believe that if we can learn to talk at our meetings and among ourselves, we can learn to talk to anyone about things that are important to us. We talk to our parents, our service providers, our caseworkers, to city councils and mayors. We talk to legislators and legislative committees, to governors and even the President. Even though it may be hard to understand us sometimes, people listen to us because they know that we know what we are talking about." For people with intellectual disabilities to have organized on this scale, even with helpers, is astonishing, especially when one considers the prognosis for the condition even a few decades ago.

Until the late 1960s, no one with DS had ever achieved prominence of any kind, but since that time, actors, activists, writers, and artists with the condition have emerged. The first major publication by someone with DS was The World of Nigel Hunt: The Diary of a Mongoloid Youth, The World of Nigel Hunt: The Diary of a Mongoloid Youth, published in the UK in 1967. Hunt was the son of a school headmaster who, with his wife, attempted to educate Nigel like any other child and included him in the regular classes at his school. Nigel's book recounts his day-to-day life, with touching references to his mother's illness and death. Jason Kingsley and Mitchell Levitz's published in the UK in 1967. Hunt was the son of a school headmaster who, with his wife, attempted to educate Nigel like any other child and included him in the regular classes at his school. Nigel's book recounts his day-to-day life, with touching references to his mother's illness and death. Jason Kingsley and Mitchell Levitz's Count Us In Count Us In is an often joyful and occasionally humorous account of their lives, including knowing descriptions of the particular challenges they've faced. In 2000, Windy Smith, who has DS, addressed the Republican National Convention in Philadelphia, reading aloud a letter she had sent to George W. Bush; she went on to serve on the President's Committee for People with Intellectual Disabilities within the Department of Health and Human Services. Many debated whether this represented exploitative manipulation by the Bush campaign, with one critic describing it as "the most grotesque piece of political theater I've ever seen." is an often joyful and occasionally humorous account of their lives, including knowing descriptions of the particular challenges they've faced. In 2000, Windy Smith, who has DS, addressed the Republican National Convention in Philadelphia, reading aloud a letter she had sent to George W. Bush; she went on to serve on the President's Committee for People with Intellectual Disabilities within the Department of Health and Human Services. Many debated whether this represented exploitative manipulation by the Bush campaign, with one critic describing it as "the most grotesque piece of political theater I've ever seen."

The highest-profile person with Down syndrome for a long time was the actor Chris Burke, who starred in the TV program Life Goes On, Life Goes On, but there have been many others, including Judith Scott, a fiber artist who died in 2005, and Luke Zimmerman, a young actor in the TV series but there have been many others, including Judith Scott, a fiber artist who died in 2005, and Luke Zimmerman, a young actor in the TV series The Secret Life of the American Teenager, The Secret Life of the American Teenager, who was also a football player at Beverly Hills High. In Germany, Rolf "Bobby" Brederlow, an actor, has a considerable following. Lauren Potter appears on the Fox hit who was also a football player at Beverly Hills High. In Germany, Rolf "Bobby" Brederlow, an actor, has a considerable following. Lauren Potter appears on the Fox hit Glee Glee as a cheerleader with DS and has her own Facebook fan page. Arden Moulton described being with Chris Burke and having strangers ask for his autograph. "It was a mind-boggling experience," she said. "He was a star first, and a person with a disability second." The trickle-down effect is incontrovertible. A poised young woman said to me by way of introduction, "I have Down syndrome, like Chris Burke." as a cheerleader with DS and has her own Facebook fan page. Arden Moulton described being with Chris Burke and having strangers ask for his autograph. "It was a mind-boggling experience," she said. "He was a star first, and a person with a disability second." The trickle-down effect is incontrovertible. A poised young woman said to me by way of introduction, "I have Down syndrome, like Chris Burke."

Research suggests that people with DS may have different learning mechanisms from typical children, and new studies are looking at whether the strengths of people with DS-who have, for example, unusually good short-term visual memory-can be harnessed to allow them to learn more, better, and faster. Because they hold visual information more readily than auditory information, teaching them to read as early as possible is especially important and may play a larger role in their language development than it does for typical children. Many memoirists, including Michael Berube and Martha Beck, suggest that their children have forms of intelligence not to be found on IQ tests-islands of insight, ability, and even wisdom that come surprisingly readily to them.

In his memoir about his son Ned, Greg Palmer says that Ned enjoys interacting with nondisabled people and engaging in conversation with them; the idea of isolating him among other mentally retarded people is anathema to his father. For many years, the Palmers avoided telling their son that he had DS, and when they finally broke the news, he said, "I find that a little hard to believe." His inability to grasp his limitations was one of the indicators of his unpreparedness for life out in the world. Like many others with DS, he has a puzzling mix of strong abilities-he can play several musical instruments and writes good poetry-and sharp limitations-he is unable to take the bus across town without getting completely lost. Greg Palmer acknowledges that he has sometimes infantilized his son; he offers self-criticism on that front and is similarly critical of a larger world that continues to infantilize Ned. He complains of a view of Ned as adorable and funny by people with whom he would like to engage at a more complex level. Ned is the author of this poem, which reflects his verbal sophistication, his navete, and his longing: GIRLS Girls are neat. Girls are sweet.They're the kind of people I love to meet.Teenage girls are what I love.They're like angels from above.I'm crazy for girls, I'm crazy for love.Girls are like the wings on a dove.When I grow up and am feeling old,I'll find all the girls I love to hold.I'd like to give all the girls a kiss.If there weren't any girls, it's girls I'd miss.

People with DS have both romantic and sexual feelings. Many men with Down syndrome are sterile, but women with DS are as fertile as those without disabilities. Parents frequently worry that their children's sexual activity will result in the birth of kids for whom they would be unable to care. The next frontier for people with DS, however, is marriage. On Life Goes On, Life Goes On, Chris Burke's character married a woman with DS and they lived in an apartment over his parents' garage. Chris Burke's character married a woman with DS and they lived in an apartment over his parents' garage.

Tom and Karen Robards were hard-charging Wall Street types who met at Harvard Business School. Six years into their marriage, in the mid-1980s, they decided to start a family. Karen had an easy pregnancy, and they were totally unprepared for Down syndrome. Tom was crushed, but Karen said, "We're going to love David just like any other baby. When people don't know what to say, we're going to tell them to congratulate us."

"I had massive crying jags," Tom said. "Then someone we didn't even know called us at the hospital to say, 'You're not alone.' That was our first moment of hope." The woman who called was Barbara Chandler, head of Manhattan Parents Support Group. "I remember asking, 'Is there any joy at all in raising a child with Down syndrome?'" Karen said. "She said, 'Yes. There is joy. There's also heartbreak.'" That honest answer gave Karen the energy she needed. The Robardses went to see a pediatrician on the Upper West Side. "There's nothing you can do," he said. Tom and Karen were shocked. "Did that mean that there was nothing for us even to think about?" Tom asked. They found a doctor who specialized in genetic defects. She told them to provide every possible form of infant stimulation. The State of New York early-intervention program arranged for physical therapists to visit the family at home. Speech therapists worked on feeding and chewing to develop oral motor abilities. The Robardses joined a support group. "Some of our closest friends are from that original group," Karen said. "We decided to write a pamphlet about the options after EI. We're lawyers, we're investment bankers; we know how to do research. We'll just call up the public, private, and parochial schools and organize all the information. It wasn't that simple. We faced the staggering bureaucracy of the public schools. I remember calling up a private school and I said, 'I understand you take children with special needs.' They said, 'Oh, yes.' I said, 'Well, let me tell you about my child. He has Down syndrome.' She said, 'Oh, not that special.' Then we tried the parochial sector. Again, 'No.' What were we going to do?" develop oral motor abilities. The Robardses joined a support group. "Some of our closest friends are from that original group," Karen said. "We decided to write a pamphlet about the options after EI. We're lawyers, we're investment bankers; we know how to do research. We'll just call up the public, private, and parochial schools and organize all the information. It wasn't that simple. We faced the staggering bureaucracy of the public schools. I remember calling up a private school and I said, 'I understand you take children with special needs.' They said, 'Oh, yes.' I said, 'Well, let me tell you about my child. He has Down syndrome.' She said, 'Oh, not that special.' Then we tried the parochial sector. Again, 'No.' What were we going to do?"

So Karen and the parents' group raised $40,000 to start the Cooke Foundation, now called the Cooke Center, one of the largest organizations in New York City focused on educational inclusion for disabled children. From its inception, it was open to children of all socioeconomic backgrounds. It was nonsectarian, but began in affiliation with the Archdiocese of New York after Karen Robards persuaded the archdiocese's director of special education to supply a space. That space turned out to be two large public lavatories; these were renovated into two classrooms by a member of the support group, a contractor who did the work at cost. "If anybody had told me that I was going to spend the next twenty years building the Cooke Center, I would have said they were crazy," Karen said. "But we met other people and we bonded and then we had a mission. Once you have that fire in the belly, you can process the emotional devastation, which we'd been denying. As for what we built from there-you get sucked in."

They hired two special-education teachers-"one for each lavatory," Karen said. The principle from the beginning was that their children should spend time with typically developing students, so they enrolled them in public schools for some subjects and taught others at Cooke. David continued to attend both Cooke and the public schools, becoming the first disabled child in New York City to be included in a regular classroom. "You have to have a place in both worlds," Karen said. "Jason Kingsley and his parents had thrown open a lot of doors. We were able to walk through those doors. When they're younger, our kids can be more fully included in classrooms because everybody's just learning colors and social skills. As you go on, the gap grows wider, and our kids really need to be focusing on life skills. How do you join a gym? How do you take money out of the ATM? Things that come naturally for other kids require effort from our kids. So we work on building those skills so that they can be included not only in education but also in life."

When David was seven, the Robardses' second child, Christopher, was born bright and bouncing. At thirteen months, he began having seizures and eventually developed status epilepticus, an often-fatal condition in which the seizures are going on almost constantly and cannot be stopped. "I kept thinking, 'Oh, well, if it's only seizures, we've done Down syndrome and we can deal with that,'" Karen said. "But it wasn't just seizures." Christopher has shown cognitive delays, mental retardation, speech delay, and motor issues. "I didn't cry about David," Karen said. "But I cried without stopping about Christopher. How could this be happening twice in one family?" Later in life, Christopher would be diagnosed with partial agenesis of the corpus callosum, which is the nerve connection between the left and right halves of the brain; a typical corpus callosum is about ten thousand times larger than Christopher's. The syndrome may have been caused by a virus Karen contracted during the first trimester of pregnancy.

"The thing about Down syndrome," Karen said, "is that there were so many kids who had gone before, there was at least a path." Christopher has some strong abilities and some noticeable deficits. When I met the Robardses, Christopher had just taught himself solitaire on the computer, which David couldn't possibly do. But David is extremely emotionally available; Christopher has never shown much interest in other people and could make it through Christmas without noticing that it was a special day. "For five years or so, he was seizing weekly," Karen said. "We couldn't leave the house without worrying what was going to happen. So it put a very different strain on us than having a child with Down syndrome."

Karen was pregnant again when Christopher's issues began to surface, and when he was eighteen months old, Kate was born, free of disabilities. When Kate was young, she found Christopher hard to relate to and became close to David despite their nine-year age gap. "When David noticed that she was surpassing him, he got very competitive with her and was not necessarily the nicest," Karen said. While the Robardses wrestled with these dynamics at home, the Cooke Center they continued to oversee grew and prospered; it had 186 employees when I visited, twenty years after it was set up. "You can't learn how to be in human society if you're separated from it," Tom said of inclusion. "You learn at least as much from your peers as you do from your teachers." Karen said, "Special education is a set of services that can be delivered in any number of places. But it has to be delivered. You can't just dump a kid in a regular classroom and not train the teacher or put in additional support. Our tagline at Cooke is 'When everyone is included, we all learn more.' The typical kids learn empathy; they learn to appreciate diversity." Cooke now helps charter schools with programs for children with special needs, educates in the public sector, and trains paraprofessionals for inclusion. Cooke works with corporations, too, to provide jobs for disabled kids. learn to appreciate diversity." Cooke now helps charter schools with programs for children with special needs, educates in the public sector, and trains paraprofessionals for inclusion. Cooke works with corporations, too, to provide jobs for disabled kids.

David was twenty-three when I met the Robardses, and he had done fund-raising for the International Down Syndrome Society. He had completed internships at News Corporation and at Sports Illustrated Sports Illustrated. "They had him archive the magazine once they put it to bed," Tom said. "Nobody else wanted to do that job. And he loved it." He was living semi-independently in a supervised setting; like Jason Kingsley, he is in the lonely high end of the Down syndrome world. "Kids who are high-functioning have more of a sense that they are different," Karen said. "David has said, for a long time now, that he wants a job, an apartment, and a wife. We said we can help him with two of those, but he's on his own for the third."

David's personality has been his best selling point. Karen said, "I've always said David will go very far because he's just so charming. When he just looks at you with those blue eyes..." She shook her head and laughed with the wonder of it. "If he meets someone and he knows that a relative is sick, next time he'll say, 'How's your father?' If he's on the phone, he always wants to know 'How is so-and-so?' He'll ask my sister, 'How are the girls?' He's got a lot of love in him." Tom concurred, explaining, "IQ measures two dimensions, mathematical reasoning and linguistic capability. But then you have emotional and empathetic intelligence. David has always had an interpersonal sense of what other people are feeling. Maybe not what they're thinking, but what they're feeling. We all learn that we have strengths and weaknesses. I'm never going to be able to play basketball. Is it sad when you realize that you're different? Or is it just somehow coming to terms with your own identity?"

When David finished high school, public special-needs education stopped. "There are very few postsecondary programs," Karen said. They finally located a school in Pennsylvania that David could attend, and at twenty-one he lived away for the first time. It was not easy for David or his parents. When I met the Robardses, David had just begun to take Effexor after being deeply shaken by a romance gone awry. He liked a girl with Down syndrome at his school. She had encouraged his attentions, but already had a boyfriend who was a friend of David's. When David was closed out by both of them, he became paralyzed with anxiety. David has a plethora of friends, and "a Rolodex that he works every day," according to Tom. Karen said, "David is a master of the cell phone and he loves to keep in contact, but he's also a lover of structure. So you would probably be Tuesday nights. Every Tuesday night he'll call you. We're Sundays and Wednesdays. 'David, do you think you could call us a different night?' 'No. You're Sundays and Wednesdays.' I think the rigidity helps stabilize him. I like knowing what I'm going to do on any given day, and he's the same way." structure. So you would probably be Tuesday nights. Every Tuesday night he'll call you. We're Sundays and Wednesdays. 'David, do you think you could call us a different night?' 'No. You're Sundays and Wednesdays.' I think the rigidity helps stabilize him. I like knowing what I'm going to do on any given day, and he's the same way."

We drifted to the question of cure. "If you talk to people very involved in the Down syndrome community," Tom said, "you'll find a range of perspectives on whether looking for a cure for Down syndrome is a legitimate objective. There are people who won't even talk about that, because to talk about a cure is to diminish the value of the people who are alive with Down syndrome. Some would even say that if they could wave a magic wand and make their child normal, they wouldn't do it." I asked Tom what he would do if he had the magic wand. "If I could have David who he is but not have Down's syndrome?" he asked. "I would do it in a minute. I would do it because I think, for David, it's hard being in the world with Down syndrome, and I'd like to give him a happier, easier life. So for David, I'd do it. But the diversity of human beings makes the world a better place, and if everyone with Down syndrome were cured, it would be a real loss. The personal wish and the social wish are in opposition. The question is whether we collectively learn more than we hurt."

Karen shook her head. "I'm with Tom. If I could cure David, I would, for David. But I think that we've grown so much as a result of having to deal with this. We've had so much purpose. I'd never have believed twenty-three years ago when he was born that I could come to such a point, but I have. For David, I'd cure it in an instant; but for us, I wouldn't exchange these experiences for anything. They've made us who we are, and who we are is so much better than who we would have been otherwise."

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 syndrome rather than an rather than an illness 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. 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 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. 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 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 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 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. 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 cliche 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 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. 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 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 early-intervention 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 autism." Jeff went to the public library 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. 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 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." 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, 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." 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.

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 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 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 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 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 forces the intellect to let go. You retreat to an intuitive level because that's the only way to read her." 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, more, please, time to go, outside, water, and and juice 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 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.'" 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 Forte. 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 she left the hospital, she had gained ten pounds, and no meaningful improvement in her behavior had been achieved. 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 manifests itself from time to time in florid psychosis. 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 nave, 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 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." 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 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 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 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." 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 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." 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 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. 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 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 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, 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. 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, 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 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, 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. 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: I was the last to hear youScream because I did notWant it to be true. You criedOut in torment and the sunKept shining through the leaves.That wasn't right......Everyone who wasn't your motherTried to comfort me. I vowedTo remain unlaughing.Even in the stunned noveltyOf devastation, I didn't realizeHow easy it would beTo 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 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 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. 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 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." 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 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. 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 Musee de Prehistoire 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 autistic child, described this experience in autistic child, described this experience in Slate 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 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." 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."