Uniquely Human: A Different Way of Seeing Autism - Softcover

Über die Autorinnen und Autoren

Barry M. Prizant, PhD, CCC-SLP, is recognized as one of the world’s leading authorities and as an innovator of respectful, person- and family-centered approaches for individuals on the autism spectrum and with neurodevelopmental conditions. Dr. Prizant specializes in communication disorders and child and human development, and is a visiting scholar at Brown University. He has fifty years of experience as an international consultant, clinical scholar, and researcher. He is coauthor of The SCERTS Model: A Comprehensive Educational Approach, now being implemented in more than a dozen countries, and widely used clinical assessment instruments. Dr. Prizant has been an invited keynote speaker/presenter in more than twenty-five countries and has published four books, 140+ articles and chapters, and has received many awards for his career improving quality of life for autistic persons and related conditions and their families. He is cohost of Uniquely Human: The Podcast, with autistic engineer, Dave Finch (UniquelyHuman.com).

Tom Fields-Meyer is author of the critically acclaimed memoir Following Ezra: What One Father Learned About Gumby, Otters, Autism, and Love from His Extraordinary Son, a finalist for the National Jewish Book Award. His work has appeared in The New York Times Magazine, The Wall Street Journal, the Los Angeles Times, and The Washington Post. The coauthor (with Barry M. Prizant) of Uniquely Human: A Different Way of Seeing Autism, and former senior writer for People, he lives in Los Angeles, where he teaches in the UCLA Extension Writers’ Program.

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Uniquely Human

CHAPTER 1

Ask “Why?”

THE first thing I noticed about Jesse was the fear and anxiety in his eyes.

I was visiting a small New England school district when I heard about an eight-year-old boy who had recently transferred from a nearby district. There he had earned a dubious distinction: administrators called Jesse the worst behavior problem they had ever encountered.

It wasn’t difficult to understand why, given his challenges. Jesse, a sturdy boy with straight brown hair and wire-rimmed glasses, struggled with severe social anxiety, extreme sensitivity to touch, and difficulty processing language. He also had a seizure disorder that was detected when he was a toddler, about the time he lost the ability to speak. He communicated with little more than guttural sounds and grunts, pushing away people and objects or physically leading people to what he wanted.

Since it was so difficult for Jesse to make his needs known, he often seemed aggravated and miserable. He sometimes took out his frustration and anxiety on himself, pounding his fists against his thighs and his forehead, covering his body with bruises. When teachers tried to direct him from one activity to the next, he often reacted with flailing limbs or by pushing them away with his arms or legs. Reports from the previous school described kicking, scratching, and biting episodes escalating into fits so severe that almost daily, three or four adults had to pin the boy down to subdue him, then isolate him in a “time-out” room.

The staff had interpreted all of this as willful, uncooperative behavior. But Jesse’s mother knew better. She understood that his actions were his way of communicating—a direct reflection of his confusion, agitation, and fear. When she explained to the administrators that her son struggled with sensory challenges that made him unusually sensitive to loud noises and being touched, they had been dismissive. Clearly, they insisted, the boy was displaying noncompliant behavior. In their eyes, Jesse was strong-willed, stubborn, and defiant, and their response was to try to break him—to treat him as a trainer would treat a horse.

What did these educators offer to help Jesse learn to communicate? Practically nothing. The district’s policy was to focus first on controlling a child’s behavior, and, only after achieving success, to address the area of communication.

They had it all wrong.

I had heard so many awful things about Jesse that I was intrigued to come face-to-face with him. When I finally did, I didn’t observe any of what I had heard described—not the defiance, not the aggression, not the willful disobedience. What I saw was a boy who was understandably frightened, anxious, and constantly on guard. And I saw something else: Jesse’s extreme vigilance and anxiety were manifestations of the inevitable damage that occurs when people—however well meaning—completely misunderstand the behavior of individuals with autism.

How does this happen? The short answer is that caregivers neglect to ask “Why?” They don’t listen carefully or observe closely. Instead of seeking to understand the child’s perspective and experience, they simply try to manage the behavior.

Unfortunately this behavioral-assessment approach—that is, using a checklist of deficits—has become the standard way of determining whether a person has autism. We say a child has autism if he displays a combination of traits and behaviors that are deemed to be problematic: difficulty in communicating, trouble developing relationships, and a restricted repertoire of interests and behaviors, including repetitive speech—known as echolalia—and actions, such as rocking, arm flapping, and spinning. Professionals observe these “autistic behaviors” and then assess the people who display them by using a sort of circular reasoning: Why does Rachel flap her hands? Because she has autism. Why has she been diagnosed with autism? Because she flaps.

Following this approach means defining a child as the sum of his deficits. How best to help such a child? By managing those behaviors or attempting to get rid of them: to halt the rocking, to squelch the echoing speech, to reduce the flapping. And what denotes success? The more we can make a child look and act “normal,” the better.

This way of understanding and supporting people with autism is sorely lacking. It treats the person as a problem to be solved rather than an individual to be understood. It fails to show respect for the individual and ignores that person’s perspective and experience. It neglects the importance of listening, paying close attention to what the person is trying to tell us, whether through speech or patterns of behavior.

On top of that, in my experience it doesn’t work—and often makes things worse.

What’s more helpful is to dig deeper: to ask what is motivating these behaviors, what is underlying these patterns. It’s more appropriate, and more effective, to ask “Why?” Why is she rocking? Why does he line up his toy cars that way, and why only when he arrives home from school? Why does he stare at his hands fluttering in front of his eyes, and always during English class and recess? Why does she repeat certain phrases when she is upset?

The Challenge of Dysregulation

Usually the answer is that the person is experiencing some degree of emotional dysregulation. When we are well regulated emotionally, we are most available for learning and engaging with others. We all strive to be alert, focused, and prepared to participate in activities in our daily lives. Our neurological systems help by filtering out excessive stimulation, telling us when we’re hungry or tired or when to protect ourselves from danger. People with autism, primarily due to underlying neurology (the way the brain’s wiring works), are unusually vulnerable to everyday emotional and physiological challenges. So they experience more feelings of discomfort, anxiety, and confusion than others. They also have more difficulty learning how to cope with these feelings and challenges.

To be clear: Difficulty staying well regulated emotionally and physiologically should be a core, defining feature of autism. Unfortunately professionals have long overlooked this, focusing on the resulting behaviors instead of the underlying causes.

If you know a person with autism, consider what makes this person less able to stay well regulated: problems in communicating, environments that are chaotic, people who are confusing because they talk or move too quickly, unexpected change, excessive worry about things that are uncertain. Then there are associated challenges, such as sensory sensitivities to touch and sound, motor and movement disturbances, sleep deprivation, allergies, and gastrointestinal issues.

Of course people with autism aren’t alone in experiencing these challenges. We all feel dysregulated from time to time. Speaking in front of a large audience, you might feel sweat collecting on your brow, your hands might quiver, your heart might race. Wearing a scratchy wool sweater might be so irritating that you can’t focus. When your normal morning routine—coffee, newspaper, shower—is thrown off by an unexpected intrusion, you might feel out of sorts for the rest of the morning. When these factors accumulate—you miss sleep, you’re under a deadline, you skip lunch, and then your computer crashes—it’s...