The Ways, and Whys, of Autism
A different way of being human
Posted September 22, 2015
By Patrick Burns and Betsy Grigoriu
According to the United States Center for Disease Control, Autism Spectrum Disorder is now one of the most commonly diagnosed developmental disorders, affecting about one in every fifty school age children. Approximately four out of every five of them are male. Children on the autism spectrum often exhibit deficits in the give and take of conversation and reading other people’s facial expressions; they struggle with navigating relationships of all kinds and adjusting conduct to suit different social contexts. In more acute cases their behaviors include repetitive speech (echolalia), rocking, arm flapping, and spinning.
Faced with a diagnosis that a child has autism, many parents feel bewildered and bereft. They want, somehow, to “fix” their son or daughter and frequently do not know how to do it or whether it can be done. Hundreds of professionals, programs, and schools have emerged to serve the needs of this growing population.
In Uniquely Human, Dr. Barry Prizant advocates a paradigm shift in understanding and treating autism. Prizant maintains that “autism isn’t an illness. It’s a different way of being human.” The behavior of autistic individuals is “part of a range of strategies to cope, to adapt, to communicate and deal with a world that feels overwhelming and frightening.” Instead of dismissing the behavior as aberrant, non-compliant or pathological, parents and professionals should ask what motivates it, what purpose it serves, and whether it actually helps the individual.
Drawing on hundreds of Prizant’s interactions with autistic children and their families (in summer camps, schools, hospitals, clinics, and his private practice), Uniquely Human dispels myths about the timing of interventions, including the claim that they will not be effective unless they occur before the child is five years old. Most important, Prizant recommends an array of approaches to address the “dysregulation” and lack of trust associated with people on the autism spectrum. Instead of demanding or pressuring the person with autism to change, thereby increasing anxiety and fear, he asserts, parents, peers and practitioners should acknowledge the individual’s emotional state and his/her attempts to communicate; practice shared control to enhance self-determination; be dependable, reliable and clear; and celebrate successes.
Prizant is a careful listener and a compassionate, creative clinician. Readers of this book are likely to find his advice useful and his perspective reassuring.
Uniquely Human is filled with “real-life” incidents that illustrate the salutary impact of asking “why” and crafting coping strategies based on the answer. One child who kept asking, “Going to the park this afternoon?,” Prizant discovered, was having difficulty (like many other children with autism) managing changes in his schedule. When his parents acknowledged his concern and encouraged him to write down the answer to his question on a piece of paper or put it on a calendar for future reference, he calmed down.
When a second-grader diagnosed with autism began crying every morning at 11:30, Prizant was baffled until her teacher remembered that in first grade, Alice had spent time on a swing in the playground (or in the gym on rainy days) just before lunch. “Mystery solved,” Prizant writes. Despite the interval of a summer vacation, Alice was searching for the positive regulating sensation of her time on the swing.
Unfortunately, Prizant does not always apply his methodology to the more difficult challenges posed by people on the autism spectrum. An adolescent boy, he indicates, was so dysregulated that he punched and kicked holes in the walls of his house and broke car windshields and windows. Prizant does not weigh in on how his parents should have responded “in the moment” to this scary behavior. Parents also want to know whether restraint is the only option. What alternative approaches might be employed? And when, if ever, should they try to change their children’s behavior.
In our judgment, Prizant’s “case studies” often belie his suggestion that parents should follow their instincts. And, at times, his recommendations seem to be at odds with his claim that “Of course people with autism can learn the rules–with support.” Consider, for example, his advice to parents to “find the humor” in difficult situations. When an autistic teenager reached out and grabbed french fries from the tray of a stranger, he tells us, the parents apologized and hurried out of the fast food restaurant with their son. After another boy relieved himself on a nonworking display toilet at Home Depot, Prizant tells us that his family “realized that their priority at the moment was to keep the boy safe, prevent him from having a meltdown, and escape.” Was it, in fact, “healthier for all just to laugh”? Were these parents increasing the likelihood of repeat performances?
Uniquely Human conveys Prizant’s healthy skepticism about labels. “People are infinitely complex,” he writes; imprecise terms of “high-functioning,” “low-functioning,” “severely autistic,” and “mildly autistic” have the effect “of unfairly pre-determining a child’s potential.”
We share his skepticism. And his concern about the stigmatizing impact of labels. That said, however, we wish he had elaborated on his assertion that autism is not an illness. We wonder whether he is equally uncomfortable with the term “disorder.” And, even though he is not a neurologist, we’d like to know how Prizant parses the plusses and minuses of the decision in the DSM-5 to eliminate the sub-categories of Autism Spectrum Disorder, so that Asperger’s syndrome is no longer a distinct diagnosis.
Although it is not a new concept in the autism literature, pounding home the importance of asking why is the major contribution of Uniquely Human. Prizant is surely right to encourage parents and professionals to focus as much or more on the underlying causes of autism than on the behaviors associated it. We must continue to ask why–but we must recognize as well that we do not yet have satisfactory answers to many of our most important and urgent questions.
Patrick M. Burns has a B.A. in American Studies and an M.A. in Human Development from Cornell University and is a therapeutic and educational placement specialist at the consulting firm, ECS.
Dr. Betsy Grigoriu has a B.S.E. in Secondary English Education, an M.A. in Clinical Community Psychology, both from Mansfield University, and a doctorate in the field of Educational Psychology from Cornell University and is a therapeutic and educational placement specialist at the consulting firm, ECS.