• • •
Bruce Spade was a professional photographer in London for some twenty-seven years, and his eye for strange beauty shows in his lifetime of photographs of his autistic son, Robin, pictures that look deeply at a person who is sometimes inexplicably tortured and sometimes exuberant, sometimes angry at the camera and sometimes besotted with it. Robin is capable of great sweetness. “He used to have this thing Harriet and I called grebing,” Bruce said. “I don’t know if you’ve seen the great crested grebe doing a mating dance. They stand out of the water, and they shake their heads and make a lot of high-pitched sounds. Robin would look you in the eyes and he would shake his head, and sometimes he’d say, ‘Look, look.’ And if he grebed at you, that was his sign; you were in.” But Robin was also inexhaustible and exhausting; as he grew up and grew stronger, his explosions of rage became increasingly frightening. He’d have a tantrum in the street and Bruce or Harriet would sit on him until he calmed down. Bruce and Harriet would have liked to have another child—“someone who knew how to play,” in Bruce’s words—but they were too tired to contemplate that.
When Robin was nine, he went off to boarding school. “It was either that or I had to give up work and go on the dole and look after him,” Bruce said. The following year, when Robin came home for the summer, he was always hungry and his mother couldn’t say no. “She wouldn’t stop feeding him,” Bruce said. “The back of the car was littered with the packets.” Robin enjoyed the eating, but he was gaining weight at a terrifying pace; he soon weighed nearly three hundred pounds. “It almost destroyed our marriage,” Bruce said. Robin became anxious about walking because he was so huge; soon, all his toenails became ingrown. Harriet had an affair. “We’ve argued so much that it’s gone beyond reconciliation,” Bruce said. “Harriet is always saying, ‘It’s time we divorced,’ but we never do it, because neither of us could handle this alone.”
Then Robin’s school was closed down because a child escaped and died, revealing inadequate supervision that would fill any parent with anxiety. Only two schools in the UK would take someone as violent as Robin. Bruce and Harriet selected Hesley Village and College in Yorkshire, a Victorian farm on fifty-four acres with its own little hotel, a village green, a pub, a bistro, a hairdresser, a post office, and a bakery, all for seventy autistic people. The day Robin arrived, one of his new caregivers suggested they go for a walk, and Robin flew at him with a head-butt, jumped on top of him, and knocked him unconscious. Months of self-injury followed. Robin banged his head so hard that he would break through doors, and so frequently that he needed a skull X-ray; he scratched his skin until it bled. Then he got into the rhythm of the place, and the violence abated.
Robin has a lively sexuality. “He masturbates a lot,” Bruce said. “He tries to look up your nose; that turns him on. I suppose it’s an orifice, he’s got that much. He wants to look up mine, and sometimes I let him, just for a minute, so he can get off. I don’t want to discourage him, and he has so little pleasure in life and this is something I can do for him, not too difficult if I don’t let myself think about the fact that he’s my son, and it’s about sex. But I don’t want to get him obsessed with nostrils, so I try not to do it too often. There is a girl at college—his pace quickens when he sees her. And although she is very noisy, and he is not really good with noise, he goes all coy when she is in the same room.”
Robin seems happier at Hesley now, but his erratic behavior continues. A few months before I met Bruce, Robin had come home on a break and couldn’t sleep. After he had been awake for four days straight, Bruce and Harriet got a doctor to prescribe some sleeping pills; these enabled him to sleep for about three hours. When he awoke, he was thrashing around and seemed distraught, so Harriet sat on his bed to try to calm him down. He grabbed her hand and bit through her tendon. “She had to go to hospital,” Bruce said. “She was shaking, in shock, and nearly unconscious. It was a terrible night.” They took Robin back to college and wondered whether the visits home were more than he could handle. “But then he came home again the week before last and he was just lovely, affectionate, and a joy to be with,” Bruce said. “He put his dirty plates in the washer. That’s huge progress. We become very proud, just as somebody else is if their child gets a first at Cambridge.”
• • •
In The Cherry Orchard, Chekhov said, “When many remedies are proposed for a disease, that means the disease is incurable.” Autism invites treatments that range from optimism to quackery. The list of such treatments of dubious efficacy is even longer than the list of treatments that bring about improvement, and parents with fantasies of perfect remission put themselves at the mercy of flamboyant visionaries who tout a range of bizarre procedures as breakthroughs. Barry Neil Kaufman and Samahria Lyte Kaufman developed Option Therapy and the associated Son-Rise Program in the 1980s to treat their own son, who they claim was completely cured of his autism; in fact, one commentator claims that doctors who treated the boy expressed doubt that he ever had autism at all. The program costs $2,000 for an initial consultation with parents and then $11,500 for a one-week program with the child. A New York psychiatrist hatched Holding Therapy, in which parents physically restrain children when they exhibit problematical behavior; this seems to exacerbate tension in both children and parents. Bookstores overflow with books such as The Horse Boy, about a child who was supposedly led out of his autism by shamans in Mongolia. It sometimes seems that every parent whose child is thriving feels compelled to write a hubristic volume effectively called What I Did Right. Many such parents generalize from strategies that may only by chance have coincided with their children’s “emergence.”
While considerable time and money have been poured into such minimally tested behavioral and conceptual methods, these do not in general pose actual physical danger to children. Chelation, however, has great potential to cause long-term harm, and even greater potential to cause unnecessary short-term suffering. This procedure was originally developed to remove heavy metals from the bodies of wounded soldiers during World War I. Synthetic compounds are administered—usually intravenously, but sometimes intramuscularly or orally—to bind to metals, which are then excreted into the blood, urine, and hair. Chelation is recommended by advocates of the theory that a mercury-based preservative used in some vaccines causes autism. Although extensive research has failed to support its efficacy, as many as one in twelve American autistic children is estimated to have undergone chelation. At least one autistic child has died from hypocalcemia—a fatal drop in calcium levels leading to heart failure—during the procedure. Many more have experienced headaches, nausea, and depression. Some parents claim to have observed miraculous improvements as a result of chelation, and those claims, made in sincerity, have led to a burgeoning, often underground, and largely unregulated business in the chemical “detoxification” of autistic children. A patent-pending “protocol” using Lupron—a castration drug that changes the body as profoundly as any medication can—conflates the possible effects of prenatal testosterone on the development of autism with normal puberty. It has been championed by a father-son team despite a lack of any verifiable evidence for its efficacy; finding that their practice constitutes “a danger to the patient community,” the Maryland Board of Physicians and authorities in at least six other states have suspended the father’s medical license, while the son, who is not a doctor, has been charged with practicing medicine without a license. Other physical interventions—putting children in hyperbaric oxygen chambers, putting them in tanks with dolphins, giving them blue-green algae, or megadosing them on vitamins—are usually neither harmful nor helpful, though they can have dangers, are certainly disorienting, and cost a lot.
• • •
The first time I met Amy Wolf, she said of her daughter, Angela, “She has no speech and is frequently incontinent; is in a full-time, round-the-clock-care facility; is beautiful and loves us; and can’t be in the world without help for a minute. She walks and enjoys it. She can
’t button a button. She can sort silverware; can eat with a fork, a spoon is a little tricky; can’t cut things; needs a straw a lot of the time. Has very little fear and awareness, so she would walk in the middle of the busy street if you took your eyes off her. She understands more than she can express, how much no one has figured out. She takes pleasure in things. Sometimes she’s quite distant. Sometimes she’s bright and makes a lot of contact. Sometimes when she sees me, she’s overjoyed, which is fantastic. She likes people—just not too many at once. She hates the doctor; hates the dentist; hates the shoe store; hates the hairdresser; hates big parties; hates surprises; hates change in routine—and, generally, seems quite at peace with her life at this point. The first fourteen years were hellacious.”
In 1972, age twenty, Amy decided to leave behind the life of urban sophistication in which she had been brought up in New York and moved to an alternative community in Taos, New Mexico. She married a healer and acupuncturist, and in 1979 became pregnant. When Angela was born, it was immediately clear that there were problems. She was put into a full-body brace to correct a contorted frame, a displaced hip, and what looked like a clubfoot. Angela’s body was hypotonic, with loose, elastic muscles that didn’t keep her limbs in place, like a rag doll. She didn’t walk until she was almost two. Words came, but slowly, and she was pitifully thin. Taos offered few supports. “There were no antidepressants,” Amy recalled. “There were no services; no Internet; no therapists. There were outhouses, apricots drying, Indian pueblos, yurts, hippies, Hispanic ancient culture, and Native American ritual. And Angela and me, somehow very far apart from this community that I had held very dear.” Her husband, healer though he claimed to be, could not cope with a disabled child, and he fled.
When Angela was three, Amy divorced and brought her back to New York to start again. At that age, Angela had some speech and could recite “Twinkle, Twinkle, Little Star.” She could pick out the family car in the street. She was beginning toilet training. Then, bit by bit, it all fell away. She lost speech and became incontinent. Her muscle tone didn’t improve. Amy had a long history with substance abuse and she spun out of control. “I was driving, when she was about four, drunk, with her in the backseat, having poured vodka down her throat while she was in the car seat, thinking that I’d kill us both by driving down an embankment into the Long Island Sound,” Amy recalled.
Instead, she joined Alcoholics Anonymous and has been sober ever since. With the support of her parents, she began looking for cures. Angela was never aggressive to anyone else, but she was often self-injurious. Mostly, though, she was just “out of control, and sometimes deeply distressed, and generally incomprehensible.” When Angela was seven, a colleague told Amy about a Japanese woman, Kiyo Kitahara, who had achieved astonishing improvements with autistic children. She had founded a school in Kichijoji, Japan, a suburb of Tokyo. Amy met with her in Boston. Her interpreter offered, “Mrs. Kitahara says, ‘Put your burdens on our shoulders.’ Mrs. Kitahara can have Angela speaking within six months, but you will have to bring her to Japan.” So Amy and her mother took Angela to Tokyo and entered her in the Higashi School. Amy was then physically blocked from entering the grounds and could see Angela only during her athletic periods, through a barbwire fence. “I stayed in Tokyo and looked at her, every day, through this fence,” Amy recalled. “She seemed okay; they had her rollerblading a lot. We subsequently discovered that she was being deprived of water to toilet-train her. It all got very dark and strange. It took five months, and then I just gathered my precious child and got the hell outta Dodge.” A Higashi School was later established in Boston, but has been repeatedly dogged by allegations of physical cruelty and assault on its disabled students.
Amy held on to her dream of a healthy child. “Another baby I craved; another baby I had. Until I had Noah, I was in psychological pain continuously. And the decision to have him helped with the scars.” She found pregnancy terrifying and was “tested to within an inch of my life,” she recalled. Amy’s parents paid to construct a group home to be managed by the Nassau County Mental Health Association, and eleven-year-old Angela moved there shortly before Noah was born. When I met Noah, he was in high school and doing volunteer work as a music therapist for autistic children. “From the age of six, he would see someone blind and cross the street to help them,” Amy said. “He is opened up spiritually, yet free of all the rage that I still hold.” Noah concurred, “It’s just taught me a lot of tolerance and acceptance. Like if someone says ‘retarded’ around Mom—God, it’s like unnecessarily stupid what she does. Even if she’s known the person for five seconds, she just goes for it.”
“In all my dreams of her, she talks to me still,” Amy said. “Letting go of speech was terrible. And letting go of the toileting just happened this year. Letting go is a continuous experience: it never finishes. I have to keep my rage in check; I have to keep my sobriety in check. I’ve experienced close family members suggesting that I kill her, and they would help me. I’ve experienced people offering the most idiotic possible cures: stuff to put in the bathtub, and gripe water, and handing me copies of When Bad Things Happen to Good People, and bullshit galore. I’ve also experienced the great inequity in the way our pay scales are structured, since the people who do the hands-on clinical work with this population are so energetic, and so frequently expert, and inspired, and they’re making what waiters and waitresses make. A good measure of a society is how well it takes care of its sick people. Our society is an outrage.” Amy spoke with the passion of someone running for office. “My story includes a continuous heartache that transcends everything else. There’s no sense of time; it’s just the same and the same. I forget how old I am, because I can’t measure it in these ways.”
• • •
While the deficits of autism are famous, the general public is less aware that people with autism may also have major abilities that the rest of us lack. Autistic subjects tend to perform better than others on certain cognitive tests, such as spatial-thinking assessments. Joyce Chung, whose daughter has autism and who served as autism coordinator at the NIMH, said, “If you removed the capacity for someone to become autistic, would that also remove the things that make us interesting as human beings? Maybe the same genetic structures also produce creativity and diversity.” Thorkil Sonne, an executive in a Danish telecommunications firm and the father of an autistic child, has set up a specialist agency in Copenhagen that places people with autism on corporate projects, presenting them not as deficient individuals to be hired out of charity, but as people with singular skills.
But the notion of uncanny genius can also be used to objectify autistic people. John Elder Robison writes, “Being a savant is a mixed blessing, because that laser-like focus often comes at a cost: very limited abilities in nonsavant areas. Some of my designs were true masterpieces of economy and functionality. Many people told me they were expressions of a creative genius. And today I can’t understand them at all. My story isn’t sad, though, because my mind didn’t fade or die. It just rewired itself. I’m sure my mind has the same power it always did, but in a more broadly focused configuration.” I have heard Temple Grandin say the same thing, and my friend who played the Philip Glass CD told me that as his social abilities improved, his pure mathematical thinking weakened. The cure can be its own disease: when you take away what’s perceived as wrong, you may also take away the person’s gift.
• • •
I first met Temple Grandin when she was sixty, and famous for her ability to narrate her own autistic consciousness to nonautistic people. A cattle handler and livestock-facilities designer whose equipment is now used in the majority of US slaughterhouses, Grandin claims that she experiences fear as her primary emotion and has an overdeveloped startle reflex of the kind that protects animals from predators. “I think in pictures,” she said. “I realized that should be able to help me figure about animals, because I think more the way an animal does.” The cattle industry struck her as both inefficient a
nd inhumane. Her objective has always been to improve the treatment of animals, which she believes she can do most effectively by reforming the places where they are killed.
When she was diagnosed as a child in the early 1950s, Temple showed the full range of autistic symptoms, and her mother, Eustacia Cutler, was told that she was a refrigerator mother. Eustacia could cope with Temple’s strange behavior, but not with the emotional chill. “Tantrums are hard to handle, and fecal smears are smelly, but exclusion breaks the heart,” Eustacia wrote in a memoir. “‘Be fruitful and multiply,’ God whispers in our ear, and leaves us to deal with the mess.” Temple recalled, “When I was two and a half, I would sit there smelling space, eating carpet fuzz, screaming, stereotypic behavior.” Her mother invented her own behaviorist system to help Temple, and she and the nanny she hired kept Temple constantly interacting. When I met Eustacia, she explained, “You have to pull them out of the limbo of their self-absorption.” Temple was given art lessons and showed a talent for perspective drawing. Her mother did all she could to encourage this skill. “You want to be appreciated for doing something other people want,” Temple recalled. “When the kid is really little, you’ve got to get somebody to just spend thirty-eight hours a week working with that kid, keeping them engaged. I don’t think the method matters that much.”
She expresses considerable gratitude for the attentions she received. “They put kids like me in institutions then. I had fifteen years of nonstop panic attacks, which was hard on everyone. If I hadn’t found anti-depressants in my early thirties, I would have been ripped apart by stress-related health problems, like colitis. I was very lucky to get some really good mentors when I was in college.” She paused and looked at me as though she had just surprised herself. “I mean, what would have happened to me if my mother had put me away instead? I hate to even think about it.” Eustacia found that she had to invent everything. “Why didn’t the doctors know as much as I did?” she wondered when we spoke. As an adolescent, Temple said to her mother, “I can’t love.” Eustacia wrote, “Adolescence is hard enough for any child, but autistic adolescence is something devised by the devil.” But Temple’s boarding school had a stable full of abused horses that the headmaster had bought cheaply, and Temple found her joy in caring for them.
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