In a Different Key: The Story of Autism (79 page)

This brought a passenger in a rear seat to his feet. Pete Gerhardt, a psychologist specializing in adolescent and adult autism, had heard everything happening up front via the Bluetooth headset he wore, which matched a headset worn by the teenager. Gerhardt and Nicholas, the teenager, had been riding the route together for weeks, as Gerhardt taught the teen the ins and outs of getting around by bus. They had started out sitting side by side, but gradually, the teacher put some distance between them, relying on the headsets to stay in contact. Gerhardt spoke as little as possible, just whispering encouragement from time to time, or calmly talking Nicholas through unexpected events that are part of anyone’s bus-traveling experience, like getting stuck in heavy traffic, or missing a stop.

But getting harassed by passengers was not supposed to be part of that experience.

Gerhardt headed for the front.

—

N
OT EVERY PLACE
is Forest, Mississippi. And not every adult with autism has the advantages Donald Triplett enjoyed through more than eight decades. The Triplett family’s wealth and influence undoubtedly played a critical part in his being accepted, even embraced, by the community. Those same advantages supported a fulfilled life, with a network of people watching out for him, and the chance to live independently, in a home of his own. To be sure, Donald’s own inherent capabilities—his native intelligence and his learned adaptability—were also crucial. But it is hard to believe he would have fulfilled his potential had he spent his life inside an institution, or in a community hostile to his differences and indifferent to his circumstances. Outside of Forest, it is easy to picture Donald being treated like that teenager on the bus.

Having been driven by parents for so long, the global conversation on autism has tended to focus on children. Beginning with Leo Kanner’s original name for the condition, “infantile autism,” moving throughout Ivar Lovaas’s ABA therapy, the battle for public schooling, and the storm around vaccines, autism as a childhood condition has almost always held the spotlight. There have been exceptions, of course—
Rain Man
’s Raymond and Temple Grandin gave us a compelling view of adults with autism—but when society thinks about autism, it usually thinks about kids. Pete Gerhardt always joked that it was only because he faced so little professional competition at the “grown-up” end of the spectrum that he became so prominent an expert in adult autism. He understood his colleagues’ preference for working with children. The kids, he would say, are cuter than the adults, who, because of their physical size and set ways, are also harder to help. Choosing to specialize in adults, Gerhardt said, was not seen as “a career move.”

The bias toward helping children with autism was evident also in advocacy messaging, which depicted kids as the protagonists (and sometimes the victims) in the autism story. Adults were rarely seen in fund-raising ads. Even biomedical and psychological research was heavily slanted toward autism in childhood, judging by scientists’ preference to recruit children when they had need for human study
subjects. Research on adults with the condition lagged dramatically by comparison.

All this means that, on their twenty-first birthdays, at the age when their “neurotypical” peers are expected to launch themselves out into the world, individuals with autism, especially those with more severe symptoms, find themselves struggling to stay engaged in the world at all. Those who require significant support to get through school—and had it in the form of state-funded aides—suddenly lose it. To be sure, pockets of excellence do exist, though they are scattered around the United States. Headquartered in Phoenix, the Southwest Autism Research & Resource Center offers a broad range of services that cover the full life span of an individual with autism and is widely admired. So is the Extraordinary Ventures program, based in Chapel Hill, North Carolina, which focuses exclusively on employment for adults. But in much of the country, there are not enough solutions like these. For most adults whose independence is challenged by autism, there are few opportunities to work, or to continue their education, or even to live in a setting consonant with the concept of adulthood. Most literally go on living in their childhood bedrooms, as long as their parents are alive.

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.

—

H
EY
,
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 unusual 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
.