Our society is so into trying to find fault with others, and not trying to understand them. I would say because we more competitive in comparison with much of the rest of the world, feeling that if we are not the one and only winner, we are a loser.
Barry M. Prizant PhD
Aug. 16, 2015
We have autism all wrong: The radical new approach we need to understand and treat it
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.
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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?
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.
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Here is the important irony: Most of the behaviors commonly labeled “autistic behaviors” aren’t actually deficits at all. They’re strategies the person uses to feel better regulated emotionally.
In other words, in many cases they’re strengths.
When a child with extreme sensory sensitivities enters a noisy room and cups his hands over his ears and rocks his body, this pattern of behavior is simultaneously a sign of dysregulation and a coping strategy. You could call it “autistic behavior.” Or you could ask “Why is he doing that?” The answer is twofold: the child is revealing that something is amiss and that he has developed a response to shut out what is causing him anxiety.
Whether or not we realize it, all humans employ these rituals and habits to help us regulate ourselves—soothe ourselves, calm our minds and bodies, and help us cope. Perhaps, like many people, you find public speaking unnerving. To calm yourself, you might take a series of deep breaths or pace back and forth while you speak. That’s not exactly the way humans typically breathe or behave in public, but an observer would not judge this as deviant behavior. The person would understand that it’s your way to cope with the stress of the situation and to soothe your nerves so that you can do your best.
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Religious services include layers of comforting rituals—chanting and praying, symbolic gestures and body movements—to enable people to let go of the worries and trivialities of everyday life and enter a higher spiritual realm.
For people with autism, comforting rituals and coping mechanisms come in all varieties: moving in particular ways, speaking in various patterns, carrying familiar items, lining up objects to create predictable and unchanging surroundings. Even proximity to certain people can serve as a regulating strategy.
Excerpted from “Uniquely Human: A Different Way of Seeing Autism” by Barry M. Prizant PhD with Tom Fields-Meyer. Published by Simon and Schuster.
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