Far From the Tree

by Solomon, Andrew

  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 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 forces the intellect to let go. You retreat to an intuitive level because that’s the only way to read her.”

  Though Cece does not have spoken language, she knows some signs and makes erratic use of more, please, time to go, outside, water, and juice. When Betsy arrives for a visit, Cece will bring out her coat and boots to indicate that she wants to go out. When she doesn’t want to go out, she takes Betsy’s coat and puts it firmly on the floor. “She does something; she knows it contains meaning,” Betsy said. “We have to learn her language, which can be as confusing for us as ours is for her.”

  It’s hard to find neutral territory for intimacy with Cece. Much of Betsy’s favorite time with Cece takes place swimming. This does, however, involve going into the public space of a swimming pool, where Cece is not capable of modifying her behavior. Betsy and Cece went to the pool at the St. Louis Park recreation center one day just after I met them. They arrived an hour before closing, when many families were there. The minute she arrived, Cece pulled off the bottom half of her swimsuit, defecated in the water, played with her feces, then ran around naked so that no one could catch her. One of the mothers screamed, “Contamination! Contamination!” Then all of the others began to yank their children out of the water. Lifeguards blew whistles and screamed, and Cece stood amid the chaos, laughing uproariously.

  I went with Jeff, Betsy, and Molly to visit Cece at the group home on her tenth birthday. We had brought a cake in with us, but for safety reasons, there were no candles. The presents were brought out of a shopping bag. Cece climbed into the shopping bag and stayed there. The only other thing she liked were the ribbons, which she kept twining and untwining. “This party, which so disrupts routine, is probably distressing to Cece,” Jeff said. “I don’t know who we’re doing this for.” Practically speaking, their purpose was to show the workers that Cece’s parents loved her, and that the staff should take care of her. “What was going through her head when she saw us come in?” Jeff wondered. “‘Oh, there are those people again.’”

  Betsy described the constant assault of people proposing interventions. “They ask, ‘Have you tried vitamin therapy?’ ‘Have you tried auditory training?’ ‘What if it’s food allergies?’ We tried audio-integration training. We got those horrible vitamins. We did sensory integration. We did the elimination diet: we dropped wheat and corn and we did gluten- and dairy-free; we eliminated casein; we eliminated peanut butter. You’re hoping for change, but you’re torturing the kid. I end up feeling I have abandoned her; I haven’t done everything possible. If I went to Russia; if I chopped off my head. Flagellation, immolation. Go to Lourdes. I read about how some parents of kids with special needs have started a research center, done forty-hour-a-week therapy, and it’s really hard for those who can’t afford that, who wonder whether if we’d done all that, our kids might be normal. She is who she is, and I can recognize her parameters and try to know what’s comfortable for her and what isn’t. That’s all I can do.”

  Cece periodically escalates into violence: throwing things at group-home staff, hurling herself on the ground, biting herself. Doctors have attempted to medicate away this misery; in the nine years I have known her, Cece has taken Abilify, Topamax, Seroquel, Prozac, Ativan, Depakote, trazodone, Risperdal, Anafranil, Lamictal, Benadryl, melatonin, and the homeopathic remedy Calms Forté. Every time I saw her, the meds were being adjusted again. A few years after we first met, Cece’s destructive behaviors were inexplicably escalating to the point that the staff at the group home felt unable to handle them. Betsy and a staff member took Cece to the emergency room. The nurse explained that they had to wait for the attending psychiatrist to complete the admission. “Okay,” Betsy said. “But she’s not going to last out here.” Ninety minutes later, Cece st
arted 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.

  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 naïve, but I think it about my depression, too. Loving Cece has done this to us.” In the three years that followed Cece’s placement, Jeff was hospitalized twice for mixed manic episodes; Betsy was hospitalized three times for depression. “Maybe some people out there with a different brain constitution could have handled all this,” Jeff said. “But the two of us ended up in the psychiatric ward.”

  Betsy resisted dressing Cece in typical teenager clothes; overalls have been her uniform of many years now. At the group home, Cece and a severely autistic boy named Emmett became friends. Like Cece, Emmett was unremittingly distressed, sleepless, occasionally violent, and heavily medicated. Betsy walked into Cece’s room one day and found Emmett with her, his pants and diaper off—“exploring, shall we say”—as Cece ran back and forth by the windows. The caretaker was not supposed to leave them alone, but opportunity knocked when she was called to a crisis elsewhere. “Cece and Emmett are never going to think romance, but they might think closeness and pleasure,” Betsy said. “They have such hard lives, and maybe they could find a little happiness that way.” The staff at the group home, however, is unlikely to tolerate such a thing, and the risk of pregnancy is alarming to all parties.

  “People keep saying, ‘I don’t know how you do it!’” Betsy said. “It’s not like I can wake up and say, ‘I don’t think I’ll deal with it anymore.’” I replied that some people do just decide not to deal with it anymore and leave it up to the state. “Hearing that,” Betsy said, “it’s as if somebody took a rake and dragged it through my guts.” Molly came home from school one night and said, “How come God doesn’t take away Cece’s autism if God can do everything?” Jeff said, “Maybe that’s the way Cece’s supposed to be.” Molly declared, “Well, God is you and you, and God is this table, and God is everything.” And Betsy continued, “And God is Cece, too.” Later, Betsy said to me, “On good days I perceive God’s light about her, and on bad days I beg for God’s understanding. That’s the thing about autism: it just is. Cece is the Zen lesson. Why does Cece have autism? Because Cece has autism. And what is it like to be Cece? Being Cece. Because no one else is, and we’ll never know what it’s like. It is what it is. It’s not anything else. And maybe you’ll never change it, and maybe you should stop trying.”

  • • •

  The word autism was used by the Swiss psychiatrist Eugen Bleuler in 1912 to describe a state in which “thought is divorced both from logic and from reality.” For many years, what we now class as autism was a part of “childhood schizophrenia.” In 1943, Leo Kanner, an Austrian psychiatrist who had emigrated to the United States, identified autism as a distinct disorder. He chose autistic because it underscored the extreme aloneness of the children he had studied. Kanner believed that autism was instigated by “genuine lack of maternal warmth,” an idea further explored by the influential psychoanalyst Margaret Mahler. Imaginationism—the idea that mothers with perverse desires produced deformed or troubled children—had been long abandoned in relation to dwarfs and others with physical deformities, but it persisted for those with psychiatric diagnoses and fit quite naturally into Freud’s account of formative early experience. Kanner’s theory that unaffectionate parents made their children autistic led to the concept of the “refrigerator mother”—though he later allowed that autism might be inborn. It was Bruno Bettelheim, the influential and controversial midcentury psychologist, who later said, “The precipitating factor in infantile autism is the parent’s wish that his child should not exist.”

  The researcher Isabelle Rapin, who has worked on autism since 1954, said to me, “We learned that it was an esoteric, rare, psychiatric disorder of highly intelligent but disturbed children. It was caused by mothers and treated with psychoanalysis, the goal of which was to break the glass ball so the butterfly could fly out. No one believed there were high-functioning autistics.” Bernard Rimland, father of an autistic son, wrote Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior in 1964, proposing a fully biological explanation for autism. In 1965, parents created the National Society for Autistic Children; at the first meeting, they are said to have worn name tags in the shape of little refrigerators. “We mothers would have liked an apology,” said Eustacia Cutler, mother of the prominent autistic intellectual Temple Grandin. “We deserve it. And so do the fathers.”

  The Austrian pediatrician Hans Asperger published a case study in 1944 of four children similar to those monitored by Kanner. However, while Kanner became one of the most influential voices in psychiatry in the English-speaking world, Asperger’s work remained obscure and was available only in German until 1981. Like Kanner, Asperger believed that his patients were capable of great improvement. He also recognized their strengths, which often included creativity, a highly developed taste in art, and insight beyond their years. Asperger believed that the condition he had documented was an affliction of upper-middle-class people who pressured their children and then withdrew when their children disappointed them.

  Children with Asperger syndrome are highly verbal early in their childhood, though they often use language in idiosyncratic ways. They generally have normal cognitive development and are interested in, though somewhat incompetent at, human interaction; a website put up by a young man with Asperger’s explained that empathy is “successfully guessing what another person is feeling.” They often lack basic social skills; Asperger coined the term little professors to describe his patients. They tend to be more aware of their condition than are people with classic autism, and this leads many into clinical depression. They are often more comfortable responding to communication than initiating it. The American Psychiatric Association is currently moving to eliminate the diagnosis; people with Asperger’s would simply have autism spectrum disorder, a category that would encompass people with severe autism and people with other related diagnoses, such as childhood disintegrative disorder. This shift acknowledges that it is almost impossible to draw clear dividing lines among these diagnoses.

  Though some speak of those with language as having high-functioning autism, people with extreme social deficits are not always helped by having a large vocabulary. While many autistic people may seem disengaged, individuals with Asperger syndrome may seem hyperengaged; they may stand too close and talk incessantly about obscure subjects. One researcher described interviewing someone with Asperger’s who seemed to her to be just fine—they had a lovely conversation. The following week, they had the same conversation. A week later, they had the conversation again. One clinician told me about a patient who at age ten ran into the street in the middle of traffic, nearly getting run over and causing an accident. His mother said, “But I told you to look both ways before you s
tep 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 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.