Far From the Tree

by Solomon, Andrew

  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 you

  Scream because I did not

  Want it to be true. You cried

  Out in torment and the sun

  Kept shining through the leaves.

  That wasn’t right.

  . . . . .

  Everyone who wasn’t your mother

  Tried to comfort me. I vowed

  To remain unlaughing.

  Even in the stunned novelty

  Of devastation, I didn’t realize

  How easy it would be

  To keep this promise.

  Anna played with her toys oddly: she’d study each one carefully when she got it, almost as though she were cataloging it, and then she’d put it behind her. She would wake up in her crib and make little chirping noises to herself. She never pointed. Jenny called the pediatrician repeatedly, and he kept telling her to stop worrying. Just before Anna turned two, Jenny joined a Mommy and Me class, and on the first day Jenny noticed that the other children were interacting with her more than Anna ever had. “I suddenly realized that I was constantly trying to put on a show for her to get her attention,” Jenny said. She took Anna back to the pediatrician, who once again said that Anna seemed fine, but when Jenny said, “She’s not talking as much as she used to,” his demeanor changed and he sent her immediately to a pediatric neurologist. The clinician at Cornell University Medical Center diagnosed her with PDD-NOS—“pervasive developmental disorder not otherwise specified” (which critics claim stands for “physician didn’t decide”)—explaining that Anna showed too much affection to receive an autism diagnosis. “Do not leave this office today and look up autism. This is not what this is,” the doctor said. Jenny describes this half-diagnosis as a “grave disservice.”

  Jenny’s husband, Garrett, is an oncologist and was used to death and illness. Jenny, who had always assumed that everything would go 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.”

  Anna comes home at four, and Jenny works with her nonstop until nine, using the token boards and the rewards system. When Anna goes to bed, Jenny, too hyped up to sleep, soothes herself with reading, writing, and movies. “I stay up almost all night and do things I can do alone in the dark, where I don’t have to see people going about normal activities that I can’t really be a part of.” Jenny wakes at 5:00 a.m. to make breakfast for her daughter and does drills with her until the school bus comes. Exhausted, Jenny climbs back into bed until four o’clock rolls around again. “I was so ashamed at first, but now I’ve come to accept that this is what I have to do in order to survive.”

  Jenny has been depressed, overwhelmed, even suicidal. “But I can’t give up on my child. She didn’t ask to be born; she didn’t ask to have this problem; she’s completely vulnerable. If I don’t take care of her, who’s going to do it?” At the beginning of Anna’s time at Reed, Jenny hoped Anna would become “indistinguishable from her peers” and be mainstreamed, but that has come to seem unlikely; indistinguishable is the catchword held out to parents over and over and is seldom realistic. Anna is teased for her difference; ironically, her imperviousness to ridicule is what marks her as unready for regular schooling. “I’d love Anna Livia to get to the point where she even knows she’s being made fun of,” Jenny said.

  Jenny had had terrible morning sickness in the early stages of her pregnancy and had considered having an abortion. “Difficult as it is to admit this,” she said, “there are times when I’ve thought, ‘Would everyone have been better off?’” She described a trip to France when she visited the Musée de Préhistoire in Les Eyzies-de-Tayac. “I saw these bones of a mother holding a baby. They’d been b
uried 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 Slate: “When you see the balled-up pants and diaper on the floor, you know you are too late. A bright red smear across the door, the molding, the wall. Turn the corner and the bedroom is a crime scene. An ax murder? In fact, it is only your daughter at her worst. Shit everywhere. Splashes of blood glistening like paint, black clots, yellow-brown feces, and a three-foot-in-diameter pond of vomit that your daughter stands in the middle of, a dog-eared copy of Family Circle in one hand, reaching for the TV with the other. She is naked except for stockinged feet, blood soaked up to her ankles. Hands dripping, face marked like a cannibal, she wears an expression of utter bewilderment. A bloody handprint on the square of your back as she balances herself when you roll down her sopping stockings. In the warm rain of the shower she proceeds to dig. She is excavating for what remains of the impacted stool, hard as a French roll. The behaviorists, the gastroenterologists, the living-skills experts, all suggest their strategies and therapies and videos and diets and oils and schedules. Certainly she knows what you want—appropriate toileting. And there are occasions when she does just that. Goes in, sits, finishes. This, maybe 5 percent of the time. Some huge, softball-size stool discovered in the toilet bowl. You shout for each other and gaze in wonder as at a rainbow or falling star. That’s how excited you are.”

  Fred Volkmar, head of the Child Study Center at Yale, tells of one of his patients, a twenty-five-year-old math genius who had thrived largely because of his mother’s exquisite care, who said to her, “Why do you need a mother? Why do you have to have a family? I don’t understand.” His mother later said, “He thinks of everything very intellectually. But he doesn’t understand how it makes me feel.” The British psychoanalyst Juliet Mitchell observed, “In extreme cases, the violence of one’s own nonexistence makes one gasp—it’s not that you’re eradicated; you’re not even there to be eradicated. There is no trace of psychic equivalence, in which your recognition of another correlates with that other’s recognition of you.”

  Irish mythology holds that a child may be whisked away at birth, and a fairy changeling left in its place. The changeling will look just like the child, but will have no heart; it will want to be left alone, will hold on to a piece of wood that recalls its fairy home, and instead of speaking, it will croak and hum. If the mother tries to caress or love it, it will laugh and spit and take revenge with bizarre acts. The only solution is to throw it on a bonfire. Martin Luther wrote, “Such a changeling child is only a piece of flesh, a massa carnis, because it has no soul.” Walter O. Spitzer, a professor of epidemiology at McGill, who has testified before Congress about autism, seemed to refer back to such mythology in 2001 when he described autistic people as having “a dead soul in a live body.” Autism advocates have understandably taken exception to such analogies; the prominent autism advocate Amanda Baggs said, “Being seen in light of the ghost of who you were expected to be is a kind of emotional violence for many disabled people.” Neurodiversity activists such as Baggs might argue that the child who seems “lost” in a different world may be content in that world. Of course, this position is put forward by people who are able to communicate, and since one of autism’s core traits is lack of empathy, autistic self-advocates’ statements on behalf of others can be suspect. Self-advocates do, however, accurately observe that parents choose treatments on the basis of guesswork about what their children must want. Parents may work hard to help their children emerge from autism and fail to do so; they may, equally, help their children lose traits of autism, then find out that their children hated being “treated” and were happier the way they were.

  • • •

  Nancy Corgi, mother of two autistic children, has not had a warm relationship with fate. She has been utterly responsible in her handling of her offspring, but she has kept her own cool at a considerable price. “Having advocated and fought for these kids now for nineteen years,” she said, “my entire personality has changed. I’m quick to pick a fight; I’m argumentative. You don’t cross me. I have to do what I have to do, and I’m going to get what I want. I never was like this at all.” I’d met so many families who tried to look on the bright side of horrible situations that I found something bracing in Nancy’s brash assertions of misery and disgust, her ability to say that if she’d known what kind of children she was going to have, she wouldn’t have had children.

  Nancy’s mother noticed some oddness in eighteen-month-old Fiona, and one day at the hairdresser’s she got into a conversation with a woman who had an autistic son. He sounded like her granddaughter. She called Nancy and said, “I made an appointment with this pediatric neurologist, and it would be really nice if you just took Fiona in.” Nancy, eighteen weeks pregnant with her second child, decided to humor her mother. The doctor took one look at Fiona and said, “She’s PDD.” Nancy was shocked. “It wasn’t something that was going to be done by next week, fixed,” she recalled. Fiona has classic autistic traits, is completely disengaged from other human beings, and showed no signs of developing speech on her own. She hates to be touched and wouldn’t keep her clothes on. “All my food is locked up in the basement or it would be thrown on the walls,” Nancy said. “Also, she could set the house on fire.” At thirty-two months, Fiona started going to early intervention at the University of Massachusetts. “About three o’clock, I would start to physically shake, knowing she would be back at three thirty-ish,” Nancy said. “I didn’t want her coming home. When I got child-care help, I would lock myself in my room. I just wanted to sit at the bottom of the dark closet, no sound, no light, nobody.”

  The summer after Nancy’s second child, Luke, turned two, Nancy and her sister were sitting on the beach at Cape Cod, and Nancy’s sister said, “You have another problem.” Nancy was astounded. “My son seemed totally normal, after dealing with my daughter,” she recalled. Unlike her sister, however, she had no experience of normal children. “All of a sudden my whole life was all about testing and testing and testing,” Nancy said. Her husband, Marcus, is an accountant. “He deals with the IRS every day. He’s used to stubborn, ridiculous bureaucracy. He has the patience and know-how to deal with insurance companies, claims, the school system’s financial stuff. That was his part, my part being that I got the kids to deal with. How many years did we drive up and down the Mass Pike for evaluations at Boston Children’s? My kids are seventeen and nineteen, and I’m still doing it.”

  Though both children are diagnosed on the spectrum, their respective autisms manifest differently. When Fiona was eight, she jumped out a second-floor window because she wanted to make mashed potatoes and knew that if she found the front-door key in the garage, she could get to the potatoes and cook them. With coaching, Fiona eventually developed language, but her syntax and affect are odd. “If I am having a conversation with someone while my daughter is at the table, she talks to herself,” Nancy said. “I go to symphony, I go to opera, I do theater with girlfriends. I’ll buy Fiona a ticket because she loves to dress up, and she loves music. She mumbles and she’s weird, with no idea how to relate to other people, but she doesn’t interrupt or bother you.” Luke was a sweet-natured child, but adolescence hit him hard. He had been on clomipramine since kindergarten, but was switched to Risperdal and Paxil at puberty when his symptoms escalated. “He is basically anxiety-ridden and really not too swift,” Nancy said. “He only talks about what interests him: videos, movies, and animals. Zero common sense. If a four-year-old calls him a bad word, he might knock him across the room. He’s angry. Two minutes later h
e’ll be cuddly. Really crummy.” Fiona was mainstreamed with an aide from first through eighth grade. Luke’s deficits of intelligence and his disruptive behavior disqualified him from mainstreaming.

  Nancy tends to express rage, but also feels despair, and when her children were young, that despair was closer to the surface. “I would get up at three in the morning and realize again that it’s not just a bad dream. Then I would look at Marcus in the morning and say, ‘How dare you sleep last night?’ What we have left, as us, is much less than when we got married.” Marcus worked long days—longer, in Nancy’s view, than was necessary. Her mother, who lived a few streets away, asked Nancy how it was going, but seldom saw her. Her mother-in-law disengaged completely. “Nobody ever rolled up their sleeves to help,” Nancy said. “Nobody liked my kids. They weren’t likable, but if somebody had acted like they were, maybe that would have helped.”

  Nancy and Marcus were on a supplementary form of insurance called Mass Health, which helped pay for a part-time caretaker for the children. Then Mass Health went through a budget shakedown and eliminated the Corgis from the system. In the end, Nancy and Marcus paid for help themselves, but the sums of money were large. Nancy decided to enroll Fiona in a residential school at fourteen; Nancy and Marcus fought tooth and nail to get her in. “My husband broke down and cried and said, ‘I just don’t know what more we can do to show you what she needs.’ That was one of two times I ever saw him cry.” They enrolled Luke at fifteen. “You are talking about two kids who need as much supervision as a toddler,” Nancy said. “So they are in school 281 days a year.”