Chris had become aggressive, mostly toward Bill, whom he kept biting and punching and head-butting. But he had brought a lot of his videos downstairs, and he started curling up with them and his mother in her hospital bed. I arrived to find Jae drugged and elegiac; Chris was demanding and noisy and kept hitting himself and other things. “Don’t hit Daddy,” Bill would say, smoothing Chris’s irate brow with one hand and holding Jae’s hand with the other. Then Chris suddenly said to Jae in his thick voice, “I love you,” and lay his head down on her chest.
Ten days after I met her, on a quiet October afternoon, Jae died. She bequeathed her teaching materials to the universities where she had found help. “It won’t do any good to write it all down,” Bill said, “because the real thing of it is Jae herself, not anything that I could record.” Shortly before Jae’s death, the city of Lancaster gave her the Red Rose Award for her work. A few days later, the Intermediate Unit that had fought the Davises on their educational priorities announced the Jae Davis scholarships to pay for ten families a year to attend the National Conference on Autism. Franklin and Marshall College announced the Jae Davis Internship Program; Penn State announced the Jae Davis Parent Scholarship; the Organization for Autism Research set up the Jae Davis Memorial Award.
Bill soldiered through his grief. “Our marriage changed completely the day Chris was diagnosed,” he said. “We very rarely had sex; we very rarely had a close or romantic moment. If we went out to dinner, which was once a year, we would talk about Chris. Things just replaced other things. If Chris never works or marries, who cares? Let Chris be Chris. Chris taught us everything. He taught us how to deal with him; how he learned; how to let him live his life. We drove to a spot the other night that his mother and he used to go to, and he just started to cry. And I know it was because of that. My son is not a puzzle. I know exactly what he is.” Bill, who had always had a taste for tattoos, started inscribing Chris’s disability on his body. Bill has the word autism emblazoned across his chest; an extremely large autism puzzle ribbon, the symbol of the Autism Society of America; and the symbol for Unlocking Autism: a U, an A, and a key.
I fell out of touch with Bill for a little while. “Jae pushed Chris so hard, and when she died, he said, ‘No school,’” Bill said when we met again. “I thought, ‘Well, if what he really wants is to watch television all day, should we keep pushing him to do all these other things?’” Bill was charged for truancy; pushed over the edge by Jae’s medical bills, the family became homeless and lived for a while on park benches in Lancaster. Eighteen months after Jae died, Chris was maturing. The smearing of feces had stopped. Chris had begun to understand that the world had other rules than his, and that he must bend to them. It was almost as though the coddling attention of his demanding mother was needed to bring him out into communication, while his father’s harder exigencies were needed to help him see its purpose—as if his mother gave him language and his father made him use it.
I had always been skeptical of Bill’s assertions about Chris’s verbal abilities; he had demonstrated only occasional comprehension of a few dozen words and spoke mostly in nouns and memorized short phrases. During my last visit, I was astonished to find him typing complicated entries into a computer; while I sat there, he logged on to eBay and searched for videos. Chris actually knew many words, but did not show an inclination to use them to connect with other people. But his capacity for emotion had grown, too. When I walked in, he began flapping his hands and making high-pitched sounds; I thought that could just be alarm, but when I sat down on the sofa, he curled up next to me.
Temple Grandin once described herself as “an anthropologist on Mars,” a description that the neurologist Oliver Sacks appropriated as the title for one of his books. But Chris was like a Martian in a roomful of anthropologists. “In case he feels everything,” Bill said, “I talk to him about it all and I love him totally and completely. Just in case.” Is it neurotypical prejudice to posit that human nature entails an aspirational longing to be loved, applauded, accepted?
• • •
Two diametrically opposite fictions contribute to a single set of problems. The first comes from the autism parents’ literature of miracles. In its most extreme form, it describes beautiful boys and girls emerging from their affliction as if it were a passing winter frost, and, after wild parental heroics, dancing off into springtime fields of violets, fully verbal, glowing with the fresh ecstasy of unself-conscious charm. Such narratives of false hope eviscerate families who are struggling with the diagnosis. The other plotline is that the child does not get better, but the parents grow enough to celebrate him rather than seek to improve him and are fully content with that shift. This whitewashes difficulties that many families face and can obfuscate autism’s authentic deficits. While the lives of many people who have autism remain somewhat inscrutable, the lives of people whose children have autism are mostly avowedly hard—some, excruciatingly so. Social prejudice aggravates the difficulty, but it is naïve to propose that it’s all social prejudice; having a child who does not express love in a comprehensible way is devastating, and having a child who is awake all night, who requires constant supervision, and who screams and tantrums but cannot communicate the reasons for or the nature of his upset—these experiences are confusing, overwhelming, exhausting, unrewarding. The problem can be mitigated by some combination of treatment and acceptance, specific to each case. It is important not to get carried away by either the impulse only to treat or the impulse only to accept.
• • •
The world of disability has seen a great deal of filicide. Those who kill their autistic children usually claim that they wanted to spare those children suffering, but anyone who questions the autism rights movement has only to look at these stories to see how urgent a cause it is to argue for the legitimacy of autistic lives.
In 1996, Charles-Antoine Blais, age six, was killed by his mother, who did no jail time but served one year in a halfway house and then was appointed as a public representative by Montreal’s Société de l’autisme. In 1997, Casey Albury, age seventeen, was strangled by her mother with a bathrobe cord, after refusing to jump off a bridge. Her mother said to the police, “She was a misfit. People were scared of her because she was different. I wish it could have been quicker. I’d wanted to kill her for a long time.” She received a sentence of eighteen months for manslaughter. In 1998, Pierre Pasquiou was drowned by his mother, who was given a three-year suspended sentence. In 1999, James Joseph Cummings Jr., at the age of forty-six, was stabbed to death by his father inside the residential facility where he lived. Cummings Sr. was sentenced to five years in prison. That same year, Daniel Leubner, age thirteen, was burned alive by his mother, who was sentenced to six years in prison. In 2001, Gabriel Britt, age six, was suffocated by his father, who dumped his body in a lake and then received a four-year sentence for pleading guilty to a lesser crime. Also in 2001, Jadwiga Miskiewicz strangled her thirteen-year-old son, Johnny Churchi, and was sentenced to time in a psychiatric hospital; a medical examiner said that she had “‘a rigorous standard of excellence’ she couldn’t live up to anymore.” In 2003, Angelica Auriemma, age twenty, was drowned by her mother, Ioanna, who had first attempted to electrocute her. Angelica’s mother said, “I worried obsessively”; she served three years. Also that year, Terrance Cottrell died of asphyxiation when his mother and other churchgoers submitted him to an exorcism. A neighbor described the mother as explaining how “they held him down for almost two hours. He couldn’t hardly breathe. Then she said the devil started to speak through Junior, though he can’t really speak, saying, ‘Kill me, take me.’ She said the church told her it was the only way to heal him.” She was not prosecuted; the minister who had led the exorcism was sentenced to two and a half years in prison and fined $1,200. In 2003, Daniela Dawes strangled her ten-year-old son, Jason, and was given five years of probation. Her grief-stricken husband testified, “Until that day she was the best mother anyone could want.” In 20
05, Patrick Markcrow, age thirty-six, was suffocated by his mother, who received a two-year suspended sentence; that same year, Jan Naylor shot her twenty-seven-year-old autistic daughter, Sarah, then set the house on fire, killing herself as well; the Cincinnati Enquirer wrote that they both “died of hopelessness.” In 2006, Christopher DeGroot was burned to death when his parents locked him in the house and set it on fire. Each of them was sentenced to six months in jail. In 2006, Jose Stable slit the throat of his son, Ulysses. He called the police and said, “I just couldn’t take it anymore.” Jose Stable served a three-and-a-half-year sentence. In 2007, Diane Marsh killed her son, Brandon Williams, age five; the autopsy said he had died of multiple skull fractures and an overdose of Tylenol PM tablets; his legs were covered in burn scars because his mother used to discipline him by dipping him into scalding water. She was sentenced to ten years. In 2008, Jacob Grabe was shot by his father, who pleaded not guilty by reason of insanity.
As the vast majority of these sentences suggest, the habit of the courts has been to treat filicide as an understandable, if unfortunate, result of the strains of raising an autistic child. Sentences are light, and both the courtroom and the press frequently accept the murderer’s profession of altruistic motives. After Zvia Lev poisoned her sixteen-year-old autistic son, she said, “I just could not see my boy grow up slowly into a brainless man.” The judge, encouraging a lenient sentence, said, “Her true punishment is having to live under the shadow of her crime, the memory of which will pursue her as long as she lives.” About the murder of Charles Blais, the president of the Montreal Autism Society said that the murder was “unacceptable but understandable.” Laura Slatkin said, “We’ve spoken to many families who say, ‘We all share that hidden, dark thought.’” In an op-ed in the New York Times, Cammie McGovern, herself the mother of an autistic child, wrote, “In mythologizing recovery, I fear we’ve set an impossibly high bar that’s left the parents of a half-million autistic children feeling like failures.” Autistic children can make great strides, McGovern continues, but to expect complete recovery—“the person your child might have been without autism”—is to enter “a dangerous emotional landscape,” one with scope for murder.
Yet altruism is a problematic word to describe acts that leave dead children in their wake. A quantitative study has shown that almost half of parents who kill a disabled child do no jail time at all. “While you could kill a person who has a cold, and that would end their suffering due to their cold, a more appropriate method is to provide them medical assistance, rest, plenty of fluids, and compassion,” Joel Smith, an autistic adult, has written on his blog. “When a drunk driver, who does not plan the result, is sent to jail for life after killing an innocent child, surely a parent who plans a murder of her child should also get the same sentence.”
The dangers of seeing disability entirely as illness and not at all as identity are starkly evident in the explanation Dr. Karen McCarron gave for suffocating her three-year-old daughter, Katie, in 2008. She said, “Autism left me hollow. Maybe I could fix her this way, and in heaven she would be complete.” One of McCarron’s friends said, “Karen never took a night off. She read every book. She was trying so hard.” Katie McCarron’s paternal grandfather has responded to such rationalizations with indignation. “Some newspapers have reported that this was done to end Katie’s pain; let me assure you that Katie was not in pain,” he wrote. “She was a beautiful, precious and happy little girl. Each day she was showered with love and returned that love with hugs, kisses, and laughter. I am positively revolted when I read quotes that hint at condoning the taking of my granddaughter’s life.” On another occasion, he said, “If these people are ‘advocates’ for people with autism, I can’t imagine what the ‘opponents’ must be like.”
Stephen Drake, research analyst for the organization Not Dead Yet, wrote, “On June 9, the Chicago Tribune published an article about the McCarron case. The title was ‘Daughter’s murder puts focus on toll of autism,’ making the thrust of the article all too clear. More space was devoted to sympathetic comments about Karen McCarron and negative comments about autism itself than to descriptions of the victim or comments from deeply grieving family members.” Dave Reynolds, editor of Inclusion Daily Express, wrote of such coverage, “In every case, neighbors and family members described the murderer as a lovely, devoted mother. In each case the murderer was portrayed as a desperate victim of her child’s disability and a victim of a social service system that failed to provide enough of the right supports.” Reynolds complains that these murders are exploited to secure subsidies for treatment programs and worries that this “reinforces the idea that these children are horrible burdens to their parents and to society. In no way can anyone justify murdering a child, nor sympathize with the killer. Each of these women had infinite alternatives to murder.”
Others would vehemently disagree that the alternatives available to parents coping with autistic children are infinite; in fact, many parents who eventually turn on their children have first struggled to secure placements that eluded them. Heidi Shelton, who attempted unsuccessfully to kill herself and her five-year-old son, said, “I can’t let Zach live in this world where he is constantly rejected by everyone, including his family, education system, etc.” John Victor Cronin, who attempted but failed to kill his twenty-six-year-old son, his wife, and himself, was able to get his son a placement only after his trial. His wife said, “There’s nowhere to go until people are almost killed; then they’ve got a place for people like Richard.” If we feel some measure of responsibility toward these parents—and the outpouring of sympathy that commonly greets these murders suggests that we do—we would serve them and their children far better with more endgame strategies. We need respite care, and free and satisfactory residential placements; we need positive narratives of autism that free parents from the compulsion to eliminate the syndrome, even at the cost of eliminating the child.
Parents of autistic children are often sleep-deprived. They are frequently impoverished by the cost of care. They are overwhelmed by the unrelenting needs of children who often require constant supervision. They may be divorced and isolated. They may spend endless hours fighting their insurance and health providers and the local education authority that determines what services their child will get. They may forfeit their jobs because they miss so many days to deal with crises; they often have poor relationships with their neighbors because their children destroy property or are violent. Stress leads people to extreme acts; extreme stress leads people beyond our most profound social taboo: the slaughter of one’s own child. Some claim to kill their autistic children out of love, and some acknowledge hate or anger. Debra L. Whitson, who attempted to kill her son, told police by way of explanation, “I waited eleven years to hear him say, ‘I love you, Mom.’” Passion is confusing, and most of these parents act out of emotion so overpowering that to identify it as either love or hate is to reduce it. They themselves do not know what they are feeling; they know only how much they feel it.
More than half of the children murdered in the United States are killed by their parents, and about half of those parents claim to have acted altruistically. Societal acceptance of that label, however, has been shown to have a toxic effect. Criminologists consistently report that the use of the word altruism by bioethicists increases not only the number of filicides but also the frequency of abuse, disinhibiting parents who are already inclined toward violence. Copycat episodes commonly follow high-profile cases in which the altruism motive is endorsed. FBI profilers have argued that in many such killings the real motive is the need for power and control. Courtroom leniency sends a message to the society at large, to other parents, and to people with autism that autistic lives are less valuable than other lives. This line of reasoning comes perilously close to eugenics.
VI
Schizophrenia
The trauma of Down syndrome is that it is present prenatally and can therefore undermine the early stages of bonding.
The challenge of autism is that it sets in or is detected in the toddler years, and so transfigures the child to whom parents have already bonded. The shock of schizophrenia is that it manifests in late adolescence or early adulthood, and parents must accept that the child they have known and loved for more than a decade may be irrevocably lost, even as that child looks much the same as ever. Initially, parents almost universally believe that schizophrenia is invasive, an added layer masking their beloved child, who must somehow be liberated from its temporary conquest. The more likely reality is that schizophrenia, like Alzheimer’s, is an illness not of accrual but of replacement and deletion; rather than obscuring the previously known person, this disease to some degree eliminates that person. Yet vestiges persist, most notably in the doggedness of personal history, for the person with schizophrenia will recall events of a childhood in which mental illness played no apparent role. He will tell his parents the things they did right and tried to do right, as well as any history of trauma. He will know his cousins by name and will preserve certain skills: a mean backhand at tennis, perhaps, or the ability to raise a single eyebrow in surprise or disdain. He may sustain other continuities—a sense of humor, a dislike of broccoli, a love of autumn sunlight, a preference for rollerball pens. He may retain his most basic aspects of character, including kindness.
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