In a Different Key

by John Donvan

  If that isn’t possible, and if state support can be procured, they are likely to be funneled into one of the small group homes that have become the default living arrangement for the disabled since the large institutions were shut down. These places, while called “homes,” are closer to dormitories, albeit with no college attached, and nothing to do all day but watch TV, go online, or go on sporadic group outings. Residents have no say in who their housemates are, or even, sometimes, when and what to eat. Minimal support staff is present, and those hired, generally at minimum wage, often have minimal training. As Gerhardt pointed out, a manicurist’s job pays about as well, but comes with tougher licensing requirements.

  It is difficult to pinpoint the number of Americans vulnerable to such a fate, in part because statistics derived from the spectrum concept often lump people with reasonably well-developed life skills together with those who are not close to independence. Obviously, they will not all need help. But tens of thousands, at least, will lead wilting lives without it. A 2013 study found that approximately 50,000 adolescents with autism were turning eighteen that year. This suggests that we might see half a million people joining the adult autistic population by 2023. Of those who had already reached young adulthood, more than half had never held a job for pay, and only 12 percent of the more severely impaired had ever been employed in any capacity. Eight out of ten in this group were still living at home, with aging parents.

  The invisibility of adults with the more severe variants of autism is one of the main reasons this is happening. Outside their own families, they have few advocates, and it does not help that, as Gerhardt pointed out, they are no longer cute. That said, however, there is at least a scattering of efforts under way to address this situation, some of them very creative.

  A Danish father named Thorkil Sonne, for example, took out a second mortgage in 2003 in order to start a company staffed almost exclusively with people who have autism. Sonne’s gamble was that his company’s service—software testing—would play to the strengths of many on the spectrum, such as superior memory and the ability to tolerate repetitive detail without getting bored or losing focus. Knowing that people on the spectrum would struggle in traditional job interviews, Sonne developed a series of programming and LEGO robot-building tasks to evaluate potential hires. His firm, called Specialisterne, or “The Specialists,” has consistently turned a profit in Denmark. He has since undertaken the challenge of exporting the model to other countries, including the United States.

  In late 2015, a New York mother named Ilene Lainer, cofounder with Laura Slatkin of the country’s first public charter school for children with autism, as well as an autism services agency called New York Collaborates for Autism, launched a pilot housing program intended as a better alternative to the group-home model. Based on a Kansas City program for people with developmental disabilities, Lainer’s program uses state funding to compensate families that agree to provide room, board, and an inclusive embrace to individuals not quite capable of living on their own. It is, in essence, a “foster family” model, requiring no new construction and offering both a means of oversight and the possibility that adults with autism will form close and enduring relationships with surrogate families.

  In 2013, Connie and Harvey Lapin—who in their late seventies were still autism activists—pushed through the California legislature a mandate blocking the state from imposing one-size-fits-all housing solutions. Instead, the Self-Determination Program they created allowed individuals and families choices, ranging from solo living to group living arrangements for individuals whose severe impairment required greater support.

  These and other efforts to change the fate of autistic adults tend to have at least two things in common: all are still small-scale and experimental; and all were initiated by parents, who worry about how their aging children will fare after they die, and who remain their prime advocates.

  Still, that may not always be the case. As awareness of autistic difference continues to spread, a broader sense of shared responsibility may come with it, inspiring communities to work harder to make room for people with autism, and not only those with language, and the gifts and skills that attract the most media coverage. In this regard, it was a remarkable development when, in 2014, the College of William & Mary introduced a course on neurodiversity, taught in part by John Elder Robison, a man whose own diagnosis of Asperger’s syndrome as an adult changed his life for the better. Robison has always tried to play a conciliatory role among the various factions in the neurodiversity discussion, urging “neurotypicals” to appreciate the perspectives of “spectrumites,” and vice versa. Courses like Robison’s advance the cause of acceptance of people on the spectrum, and may even inspire a desire to be part of the solution to the problems faced by adults.

  Pete Gerhardt, for one, has long argued that the mission of advocacy for adults with autism ought to be shared by a community larger than that of aging parents. In his ideal world, acceptance of individuals’ autistic differences would become so widespread and automatic that, in virtually any setting—at our jobs, at the local diner on Saturday mornings, on the bench that gets the afternoon shade in the park, or anyplace where the same people tend to bump into one another, again and again, even among strangers—we would recognize, and take steps to welcome and protect, the odd man out.

  —

  HEY, WHAT’S YOUR PROBLEM, MAN?

  To Gerhardt, the words sounded threatening. Now he was moving toward the front of the bus, trying to reach Nicholas before the situation flew out of control.

  Suddenly, a different passenger stood up, blocking the way. Gerhardt didn’t know him, but after all these weeks spent riding around with Nicholas, he realized he had seen him before. The man approached the bullying passengers, and, according to Gerhardt, he said to them: “What’s his problem? He’s got autism. So what’s your problem? How about you shut up?”

  There was a tense silence and a whiff of threatened violence in the air. But the bullies must have sensed that everyone else on the bus had just lined up behind Nicholas. They shrugged. And then they left him alone.

  Gerhardt was stunned. He was also elated. That bus, on that route, he realized, had become one of those impromptu communities he had in mind. No introductions had been made, but a familiarity had arisen among the regulars, the dozen or so passengers who took that same route at the same time every day. As in Forest, Mississippi, a neighbor had decided that the odd man out was, in fact, “one of us,” simply part of the group.

  It happened on a bus in New Jersey. It can be that way anywhere.

  AUTISM TIMELINE

  This is actually two timelines. One is made up of political, scientific, and other public milestones. The other, in italics, shows personal milestones in the lives of several of the parents and young people with autism who are profiled in this book. The combination, we hope, helps to illuminate how changes in laws and attitudes affected individuals.

  1848

  Samuel Gridley Howe, an educator and advocate, reports to the Massachusetts legislature on his investigation into conditions of the intellectually disabled statewide. Several of the individuals then categorized as “idiots” would likely be diagnosed with autism today.

  1910

  Eugen Bleuler, a Swiss psychiatrist, coins the term autistic thinking to describe the thought patterns of some of his schizophrenic patients.

  1919

  Archie Casto, age five, from a family of six in Huntington, West Virginia, is sent to live at the Huntington State Hospital for the Insane.

  1933

  On September 9, Donald Triplett is born to Mary and Beamon Triplett of Forest, Mississippi.

  1937

  On advice from their doctors, Mary and Beamon Triplett place Donald in the Preventorium, an institution to prevent children from contracting tuberculosis in Sanatorium, Mississippi.

  1938

  Beamon Triplett writes a thirty-three-page account of his four-year-old son Donald’s unusua
l behaviors and sends it to child psychiatrist Leo Kanner, head of the department of child psychiatry at Johns Hopkins Hospital.

  Hans Asperger, an Austrian pediatrician, delivers a talk at Vienna’s University Hospital describing boys seen in his clinic who exhibit social deficits combined with strong intelligence. Influenced by Bleuler’s use of autistic, he borrows the term to identify a syndrome he calls autistic psychopathy. It is the first time it is used in its modern sense.

  Mary and Beamon Triplett take Donald, now five, to meet with Kanner.

  1942

  In a letter to Mary Triplett, Leo Kanner theorizes that Donald and several other children with similar behaviors have a disorder not previously recognized. Like Asperger, he too borrows the word “autistic” from Bleuler, calling this new disorder “Autistic Disturbances of Affective Contact.”

  1943

  Leo Kanner publishes “Autistic Disturbances of Affective Contact,” the clinical account of eleven children that will lead to the recognition of autism as a distinct syndrome.

  Donald Triplett goes to live with Ernest and Josephine Lewis on a farm outside Forest, Mississippi.

  1944

  Hans Asperger publishes his postgraduate thesis, “Die ‘Autistischen Psychopathen’ Im Kindesalter.” Largely overlooked for most of the next four decades, it will lead to the recognition of Asperger’s syndrome.

  1947

  Donald Triplett is hospitalized with juvenile rheumatoid arthritis.

  1948

  In an article in Time magazine, Kanner describes children with autism as being “kept neatly in a refrigerator which didn’t defrost” by their withholding parents. His metaphor will give rise to the phrase “refrigerator mother”—a mother whose cold and rejecting behavior was said to have caused her child’s autism.

  1959

  Researchers conduct experiments in which they administer LSD to children with autism, partly in the hope of facilitating speech. The experiments are unsuccessful, and the research is later abandoned, as LSD becomes stigmatized and hard to obtain.

  Psychiatrist Lorna Wing’s three-year-old daughter is diagnosed with autism.

  1960

  Donald Triplett, now twenty-seven, learns to drive.

  1961

  British child psychiatrist Mildred Creak publishes “Nine Points,” an attempt to define the criteria for diagnosing “Schizophrenic Syndrome in Childhood,” one of many competing descriptions for clusters of autistic traits.

  1962

  A group of parents in Britain founds what will become the National Autistic Society, the first autism organization.

  1963

  British psychologists Beate Hermelin and Neil O’Connor conduct experiments, the results of which strongly suggest a biological rather than a psychogenic basis to autism. They will continue this research through 1970.

  Ruth and William Sullivan’s son Joseph is diagnosed with autism.

  1964

  Bernard Rimland, a psychologist and parent of a son with autism, publishes Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior. Its attack on the theory of the refrigerator mother proves decisive.

  Parent activist Ruth Sullivan organizes a small group of autism mothers to campaign for their children’s access to public education.

  An early successful use of applied behavior analysis (ABA)—known as the Dicky study—conducted by Montrose Wolf, Todd Risley, and Hayden Mees, prevents a child with severe autism from losing his sight.

  O. Ivar Lovaas, a psychologist, begins experiments using ABA at UCLA with severely affected children as his subjects. As part of his attempt to modify autistic behaviors, he administers electrical shocks.

  1965

  LIFE magazine publishes an article introducing the public to Lovaas’s controversial treatment.

  A group of parents founds the National Society for Autistic Children (NSAC), the first organization in the United States to campaign for the rights of children with autism. Bernard Rimland and Ruth Sullivan are prime movers.

  Educator Sybil Elgar opens the first school for autistic children in the United Kingdom.

  1966

  South African psychologist Victor Lotter publishes the first prevalence study on autism, based on his survey of eight- to ten-year-olds in Middlesex County, England. His finding of 4.5 cases per 10,000 children will become the baseline for all subsequent prevalence reports.

  Psychologists Eric Schopler and Robert Reichler launch a pilot program at the University of North Carolina that will lead to the establishment of TEACCH (Treatment and Education of Autistic and Related Communication Handicapped Children).

  1967

  Bruno Bettelheim, director of the Orthogenic School at the University of Chicago, publishes The Empty Fortress: Infantile Autism and the Birth of the Self and it becomes a bestseller. The book blames autism on psychological trauma, usually inflicted by mothers during childhood.

  Burton Blatt, an educator, and Fred Kaplan, a photographer, publish Christmas in Purgatory, a graphic exposé of the “hell on earth” they discovered inside several American institutions for the intellectually disabled.

  Rita and Jerry Tepper’s son Steven is diagnosed with autism.

  1969

  At the annual meeting of the National Society for Autism, Kanner gives a speech in which he “exonerates” parents of responsibility for their children’s autism.

  1970

  Lorna Wing, psychiatrist and mother of a daughter with autism, publishes the first book aimed at parents about the challenges of raising a child with autism: Autistic Children: A Guide for Parents and Professionals.

  Alice and George Barton adopt Frankie, a six-year-old boy with severe autism, from an orphanage in California.

  1971

  Tom Gilhool, an activist and lawyer, represents the Pennsylvania Association for Retarded Children in a lawsuit demanding access to public education for children with developmental disabilities. Gilhool wins, after which many other states follow Pennsylvania’s lead in changing their laws to accommodate such students.

  Activist parents Mary Lou “Bobo” Warren and Betty Camp succeed in getting the North Carolina State Legislature to pass a bill funding TEACCH, which will become one of the most influential and widespread educational programs for children with autism.

  In California, Alec Gibson kills his thirteen-year-old son with autism, thinking that he is saving him from the world’s cruelties. He confesses immediately and is given a life sentence.

  1972

  Geraldo Rivera, a television news reporter, exposes horrendous conditions at the Willowbrook State School, an institution for the mentally disabled in Staten Island, whose population includes many children and adults with autism. The scandal leads to the closing of Willowbrook and increased pressure to close similar institutions.

  1974

  California governor Ronald Reagan signs into law a bill committing the state to educate all children, regardless of handicap.

  Shawn Lapin, a six-year-old boy with autism, is prominently featured in a Newsweek cover story titled “The Troubled Child.”

  1975

  The Federal Education for All Handicapped Children Act is passed, later to be renamed the Individuals with Disabilities Education Act.

  1977

  British psychiatrist Michael Rutter and American psychologist Susan Folstein publish their “twin study,” significantly bolstering the understanding of autism as a condition with a strong genetic component.

  1979

  Lorna Wing and psychologist Judith Gould publish data that supports their argument that autism should be described as a “spectrum.”

  1980

  Rosemary Crossley and Annie McDonald publish Annie’s Coming Out, an account of how Crossley used “facilitated communication” to enable Annie, who is severely physically disabled, to communicate.

  Autism is listed as a mental disorder for the first time in the DSM (Diagnostic and Statistical Manual of Mental Disorders
).

  1981

  Lorna Wing publishes her paper “Asperger’s Syndrome: A Clinical Account,” introducing Hans Asperger to the English-speaking world.

  Ivar Lovaas publishes Teaching Developmentally Disabled Children: The ME Book, the first hands-on guide for parents and professionals on the use of ABA to treat children with autism.

  1985

  Psychologists Simon Baron-Cohen, Alan Leslie, and Uta Frith publish a landmark study on autism and “Theory of Mind,” the idea that individuals are aware that others possess mental states distinct from their own. People with autism, they find, often fail to employ a Theory of Mind.

  1986

  Temple Grandin publishes Emergence: Labeled Autistic, her first book about the experience of having autism.

  1987

  Ivar Lovaas publishes a study asserting that 47 percent of the children he is treating have achieved “recovery” from autism due to his program of ABA. Controversy erupts over the validity of his results.

  1988

  Dustin Hoffman stars in the movie Rain Man, which puts autism on the map as never before.

  Archie Casto is released from Spencer State Hospital after six decades of institutionalization.

  1990

  Having learned about facilitated communication (FC) at Rosemary Crossley’s lab in Australia, Douglas Biklen, an educator at Syracuse University, publishes his findings about it in the Harvard Educational Review. Professionals working with autistic children rapidly adopt FC.

  The US Congress passes the Individuals with Disabilities Education Act. For the first time, autism is classified as a disability for purposes of entitlements.

  Alison Tepper Singer’s daughter, Jodie, two years and eight months old, is diagnosed with autism.