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. “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.”
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 rather than an illness because it is a collection of behaviors rather than a known biological entity. The syndrome encompasses a highly variable group of symptoms and behaviors, and we have little understanding of where it is located in the brain, why it occurs, or what triggers it. We have no way to measure it but by its external manifestations. The Nobel Laureate Eric Kandel said, “If we can understand autism, we can understand the brain.” That is a generous way of saying that we will understand autism only when we understand the brain.
Autism parents are activist. Not since the height of the AIDS crisis has there been such an aggressive campaign for funding and research, with scores of organizations (many of them with snappy acronymic titles such as SafeMinds) pursuing theories of causality, the development of behavioral treatments, appropriate schooling, disability benefits, support services, and supervised housing. Cure Autism Now, a parent group, pushed Congress to pass the 2006 Combating Autism Act, which mandated a billion dollars of spending in five years for research on autism and related disorders. Thomas Insel, director of the National Institute of Mental Health, said, “We get more calls from the White House about autism than about everything else combined.” Between 1997 and 2011, the number of books and articles published per year about autism increased more than sixfold.
Autism is deemed a pervasive disorder because it affects almost every aspect of behavior, as well as sensory experiences, motor functioning, balance, the physical sense of where your own body is, and inner consciousness. Intellectual disability is not part of autism per se; the syndrome is rooted in a disruption of social function. The primary symptoms, which may occur or not in any constellation in any individual with autism, are lack of or delay in speech; poor nonverbal communication; repetitive movement, including flapping arms and other self-stimulating behaviors; minimal eye contact; diminished interest in friendships; lack of spontaneous or imaginative play; compromised empathy, insight, and sociability; diminished capacity for emotional reciprocity; rigidity; highly focused interests; a fascination with objects such as spinning wheels and sparkling things. Autistic children and adults often think in an extremely concrete manner and may have difficulty understanding metaphor, humor, irony, and sarcasm. They are given to obsessive, stereotyped behavior, forming attachments to seemingly random objects, arranging toys by size or color rather than playing with them. Autistic people may engage in self-injurious behavior, including hand-biting and head-banging; they may have sensory-motor deficits. Many autistic children do not develop the ability to point to things and instead have to lead someone to what they wish to indicate. Some have echolalia, in which they repeat words or phrases, often without any apparent understanding of their meaning. The diction of autistic people who speak may lac
k 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.
In a caustic reply to “Welcome to Holland,” with its touching depiction of disability as a strange but beautiful place full of quiet joys, one mother of an autistic child penned “Welcome to Beirut,” equating the experience of parenting an autistic child with being dumped unceremoniously into the middle of a war zone. This hell is partly a matter of the autistic child’s extreme symptoms, which may include a tendency to spread feces on the walls, the ability to go many days without sleeping, in a state of manic high energy, an apparent inability to connect with or speak to another human being, and a propensity for random acts of violence. There is no treatment for the atypical neurological configuration that is autism, but one can educate an autistic child, administer medications, or make dietary or lifestyle modifications that may relieve a child’s depression, anxiety, and physical and sensory problems. No one has figured out what makes one treatment more effective than others for a particular person. To add to the frustration, many children are unresponsive to any form of treatment, but the only way to figure that out is to treat them for a long time and then give up. The treatments that are reported most effective are incredibly labor-intensive and vastly expensive. Numerous tales of “emergence” drive parents to fight toward an elusive miracle. So the chances are good that a parent will drive himself or herself nearly crazy, come to the verge of bankruptcy, and still have a child whose disturbing behavior cannot be resolved. Most parents can ultimately accept conditions that are untreatable and will devote themselves to treating those that are treatable, but autism betrays such neat Serenity Prayer divisions.
The cliché about autism is that the syndrome impedes the ability to love, and I began this research interested in how much a parent could contrive to love a child who could not return that affection. Autistic children often seem to inhabit a world on which external cues have limited impact; they may seem to be neither comforted by nor engaged with their parents and are not motivated to gratify them. Tending to them can be gravely frustrating because the distinction between deficits of emotion and deficits of expression is often opaque. It is largely unknowable to what extent severely autistic people can hear and understand everything but cannot make themselves heard or understood, and to what extent they lack some domains of awareness entirely. The question of how we love people with autism is Pascalian. If they can receive affection yet are not given any, they doubtless suffer. If they cannot receive affection yet are given much of it, that affection may be squandered—presumably the lesser of two evils. The problem is that emotion is not gratis. To love a child who does not evidently mirror your love exacts a more terrible price than other love. Yet most autistic children, despite the syndrome’s reputation, do develop at least partial attachments to others, at least eventually.
There is another way to look at autism. Under the banner of neurodiversity, some people, many on the autism spectrum, have declared that autism is a rich identity, even if it is also a disability. The tension between identity and illness is common to most of the conditions in this book, but in no other instance is the conflict so extreme. Confronting desperately frustrated parents with the idea that autism is not an adversity can seem insulting. Other parents, however, frame their children’s difference in a more positive light. Neurodiversity activists lobby for their dignity; some believe they speak for the larger autistic community and reject treatments that might eradicate autism. Since such treatments do not exist, this is abstract philosophy, but the arguments bear on when and how to use the limited interventions we do have.
• • •
Betsy Burns and Jeff Hansen had planned to have just one child, but when their daughter Cece was almost two, Betsy decided she wanted another and became pregnant almost immediately. Going for amniocentesis, “I said to Jeff, ‘What would we do if we found out something was wrong?’” Betsy recalled. “And he said, ‘Just love the child.’ So we made a commitment to love a child with special needs, without even knowing that we already had one.”
Cece had been a good baby, happy to play by herself, though even as an infant she didn’t sleep much; the new arrival, Molly, was more demanding—but also more engaged. Over time, Jeff and Betsy worried that Cece was not talking. She never said milk; she gave them a cup. Their doctor assured Betsy that she was just an anxious first-time mother. Then Jeff, an English teacher, found a job at a Minnesota high school, so the family moved to St. Louis Park, outside Minneapolis. Betsy joined a mothers group when Cece was three and listened to the other women talk about their children. “I went cold. Something was terribly wrong,” she said. Betsy requested an 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.” 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.
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 dra
wing 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.”
Betsy wrote a novel, Tilt, about this period of her life; in it, she described typical days with Cece. “The behavior specialist has told us that if we give her food while she is tantrumming—and we know she wants food because she stands by the cabinet and bangs the heels of her hands against the wood—then we will be rewarding her for tantrumming and bribing her into acquiescence. But when the world is horribly disorienting, what woman doesn’t want to eat? She’s turning into a kind of luminescent orb of a child.” In another passage, Betsy describes, “I return to her bath and she is happily floating in the tub, pushing small brown things around, little brown things that are disintegrating. Little brown things that are shit. Oh, Christ! Oh, God help me. I scream get out get out get out. But why do I think she can understand? She’s still smiling. I yank her out and her heavy self falls and slips against the side of the tub and then there is shit in her hair and shit on my hands and she is laughing. I can’t put her back in the tub because the shit has to go down the drain and I can’t rinse her off in the sink because she’s too big, so I put towels on the floor and soak washcloths in the sink and squeeze them over her head and watch the water run down her sides. And then I see the holes still open in her leg and think, Great, shit in an open wound.”
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