- As I wrote before, a child’s disability is not about the parents.
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- Autism and Your Family | Autism Speaks
Large-scale warehousing is gone—and good riddance, most say. An obvious alternative is residential arrangements offering multiple spaces to people with autism, who can share support services under one roof in a setting that really is a home.
As I wrote before, a child’s disability is not about the parents.
At present, however, given both start-up costs and resistance from neighbors, the number of spaces in such homes is limited, and landing a spot can be extremely difficult: nationally, more than 88, adults are already on waiting lists. All of which leads to an unsettling answer for those parents asking what happens, after they die, to their children with autism. Mary Triplett had been born into the McCravey family, financiers who had founded and still controlled the Bank of Forest. Uncommonly for a woman at that time, particularly in that milieu, she had a college degree.
With a degree from Yale Law School and a private practice located directly opposite the county courthouse, Oliver would later hold the position of Forest town attorney and would be admitted to the bar of the Supreme Court of the United States. But as a lawyer, he was considered brilliant, and when he proposed to Mary, her family apparently raised no objections.
Myths about autism
Their first son, Donald, was born in September A brother came along nearly five years later, while Donald was in Sanatorium. Also named Oliver, the baby stayed behind with his grandparents in Forest when, in October , the rest of the family boarded a Pullman car in Meridian, Mississippi, headed for Baltimore. Leo Kanner.
Aptly titled Child Psychiatry , this definitive work immediately became the standard medical-school text, and was reprinted through Typed up by his secretary and sent ahead to Kanner, it came to 33 pages. Their little boy, Oliver wrote, had almost never cried to be with his mother. Certain words and phrases captivated him, and he would loop them aloud endlessly: trumpet vine , business , chrysanthemum.
At the same time, Donald exhibited some prodigious, if isolated, mental skills. And the random humming he engaged in while spinning blocks turned out not to be quite so random after all. Rather, he always picked three notes that, if played simultaneously on a keyboard, would blend into a perfect chord. Alone in thought, Donald gave the impression of a quite intelligent little boy, working through some sort of problem.
When Kanner finally met Donald, he confirmed all this, and more. The result was revealing. The surviving medical records of that initial visit contain a notation preceded by a question mark: schizophrenia. It was one of the few diagnoses that came even close to making sense, because it was clear that Donald was essentially an intelligent child, as a person exhibiting schizophrenia might easily be. But nothing in his behavior suggested that Donald experienced the hallucinations typical of schizophrenia. Kanner kept Donald under observation for two weeks, and then the Tripletts returned to Mississippi—without answers.
Kanner simply had no idea how to diagnose the child. The family had made three follow-up visits to Baltimore, all equally inconclusive. Perhaps hoping to allay her frustration, Kanner added that he was beginning to see a picture emerge. He had, however, been working on a name for this new condition. Kanner did not coin the term autistic. It was already in use in psychiatry, not as the name of a syndrome but as an observational term describing the way some patients with schizophrenia withdrew from contact with those around them.
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Like the word feverish , it described a symptom, not an illness. But now Kanner was using it to pinpoint and label a complex set of behaviors that together constituted a single, never-before-recognized diagnosis: autism. Kanner published his findings in , in a journal called The Nervous Child. Since writing to Mary the previous year, he had added two more cases to this total: 11 children, 11 histories. But he started the story with Donald.
For all the progress that Donald has made in the decades since—the driving, the golfing—conversation is an art that continues to elude him. A regular chat, the casual back-and-forth of kicking around an idea, is something he has never experienced. When asked questions—even questions that invite some elaboration—he responds in a terse, one-way manner, like a man working his way through a questionnaire.
He even has a habit of assigning numbers to people he encounters, a sort of internal indexing system.
An old acquaintance named Buddy Lovett, who resides one town over, in Morton, Mississippi, told us that Donald had assigned him the number sometime in the late s. The numbers just come to him, he says, and then stay forever.
Bundles of Joy … that Cling
Likewise, those who receive a Donald Number seem to remember it for the rest of their lives. That is almost certainly not what Donald intends. Honor is one of those concepts—an abstraction arbitrating between the ideal and the actual—unlikely to come easily to someone like Donald, who is far more comfortable in a world ordered by established facts, by what literally is.
This is why it is generally believed that people with autism have difficulty lying, or appreciating a joke. Although Donald obviously enjoys pondering lists of people, places, and things, he does not engage easily with implication, mood, or emotion. P eter Gerhardt tells the story of his friend Tony, who was 55 years old when he got a crash course in the condolence hug.
Tony, diagnosed with autism as an adult, had lived all his life under the same roof as his mother. Then she died. He handled it fine, observing how his brother was responding to the same sorts of approaches, and comprehending that the people doing this were trying to help him not feel sad. Then he went home, hugged his neighbor, and nearly got arrested. Tony thanked her, and she offered condolences. According to Peter Gerhardt, what happened next is a textbook example of the kind of misunderstanding that bedevils people with autism. So he went to hug her. Tony, a man bright enough to have earned a college degree, simply lacked the instinctive experience—the teachable experience, Gerhardt contends—to tell whether or not a person wants a hug.
Autism and Your Family | Autism Speaks
He was sufficiently self-aware to understand that he was missing vital cues, but he had no idea what they were. Every time I think I learn a new rule, you change it on me. The answer to this problem, Gerhardt argues, is the right kind of education for the many Tonys out there. At present, he contends, schooling for children with high-functioning levels of autism overemphasizes traditional academic achievement—trying to learn French or the state capitals—at the expense of what someone like Tony really needs, a set of social skills that keep him from making mistakes such as hugging his neighbor the wrong way.
These skills—like knowing how to swipe a Visa card—are not generally taught to kids with autism. And once they become adults, the teaching, in all too many cases, stops completely. In general, state-funded education ends the day a person with autism turns Beyond that, there are no legal mandates, and there is very little funding.
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But, as Gerhardt notes, a little more information on both sides might have prevented this misunderstanding in the first place. Donald lives alone now, in the house where his parents raised him. Several of its rooms—including the dining and living rooms, where his parents welcomed visitors—are dark and musty with disuse. Donald rarely enters that part of the house. The kitchen, bathroom, and bedroom are home enough for him.
Most times, he sets six days as his maximum time away, and maintains no contact afterward with people he meets along the way. He is, in all likelihood, the best-traveled man in Forest, Mississippi. This is the same man whose favorite pastimes, as a boy, were spinning objects, spinning himself, and rolling nonsense words around in his mouth.
At the time, he seemed destined for a cramped, barren adulthood—possibly lived out behind the windows of a state institution. Instead, he learned to golf, to drive, and to circumnavigate the globe—skills he first developed at the respective ages of 23, 27, and In adulthood, Donald continued to branch out.
Autism is a highly individualized condition. The amount of room the brain makes available for growth and adaptation differs, often dramatically, from one person to the next. In Forest, it appears, Donald was showered with acceptance, starting with the mother who defied experts to bring him back home, and continuing on to classmates from his childhood and golfing partners today. Kanner believed that finding him a living situation in a more rural setting would be conducive to his development. So in , the year he turned 9, Donald went to live with the Lewises, a farming couple who lived about 10 miles from town.
His parents saw him frequently in this four-year period, and Kanner himself once traveled to Mississippi to observe the arrangement. Likewise, during high school, when Donald was again living back home with his parents, it appears his ways were mostly taken in stride. She recalls his sitting with a notebook and filling page after page with numbers, and her impression, as well as that of others, that they were seeing evidence of a superior mind at work. He increasingly came to terms with how his world was shaped, at the same time that his world was adjusting to him.
The choir director, we were told by one member, never used a pitch pipe, because he took any note he needed directly from Donald. Ware was clearly rooting for his classmate, as were, he says, the other members of the fraternity. Tranquility, familiarity, stability, and security—if we were talking about healing, these would create an ideal environment. He needed only to grow, and that he did, spectacularly. By the time she died, Donald had grown into manhood, learning more about the world and his place in it than she could ever have imagined in those early years.
Maybe they were picking on him a little; maybe they were just seeking entertainment. Regardless, Donald says he glanced quickly at the building and tossed out a large number at random. Apparently the other kids bought it on the spot, because the story would be told and retold over the years, with the setting eventually shifting from courthouse to school building—a captivating local legend never, apparently, fact-checked. On one level, the story of Donald and the bricks demonstrates again the risks inherent in such pigeonholing.
But on another level, it reveals something unexpected about Donald in particular. At the time of that episode, he was a teenager, barely a decade removed from the near-total social disconnect that had defined his early childhood. The children in this phase were usually nearing their teenage years. The meaning of age here reflects normative parental beliefs about what the child should be doing at their current age with regard to learning, communicating, socializing, and so forth.
In this phase, parents began to give up the expectation that their child would reach the hoped for self-care, social, or vocational capacities of other adults. Parents were learning more about professional or scientific knowledge related to autism, and their own understandings of their child often changed as a result.
For example, parents started to retrospectively reinterpret earlier perceptions as indicative of symptoms of ASD, and some reported their own indigenous care efforts to be consistent with professional therapy for autism.
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Whenever we were in the restaurant, he used to get agitated. That was probably the first sign of socialization problem.