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 easy to beme extremely agitated.
We all have these challenges, but people with autism are unusually ill equipped to deal with them because of their neurology. That makes them far more vulnerable than others—that is, their threshold can be much lower—and they have fewer innate coping strategies. In many cases, they also have sensory-processing differences: they are either highly sensitive or undersensitive to sound, light, touch, and other sensations and therefore less able to manage. In addition many people with autism are innately unaware of how others might interpret their actions when they are dysregulated.
Feeling emotionally dysregulated affects different people in different ways. Often the reactions are immediate and impulsive. A child’s behavior may shift suddenly, with no apparent cause. When a child is exposed to a loud noise, for instance, he might drop to the floor. I often see children refuse to enter a gym class or the school cafeteria. Their teachers might mistakenly believe that this is willful disobedience, a planned attempt to escape an activity the child doesn’t enjoy. The reason is typically much deeper than that: the child can’t bear the volume or quality of the noise or the chaos of the setting.
When I worked in a preschool autism program based in a hospital, the children ate lunch in the classroom on trays brought up from the hospital cafeteria. Once a teacher and I led the four- and five-year-olds to the cafeteria’s kitchen so they could see how the trays were cleaned. At exactly the moment we arrived, the industrial-size dishwasher spewed forth steam and suddenly emitted a high-frequency SSSHHHH! Instantly all the children dropped their trays, some covered their ears and screamed, and they ran for the exit. It was as if a monster had suddenly appeared, inches from their faces.
That’s dysregulation, sudden and visible.
Sometimes the cause of dysregulation is less obvious. While visiting a preschool where I consulted, I was walking outdoors with Dylan, a four-year-old with autism, when suddenly and without warning, he dropped to the ground and refused to proceed. I gently picked him up and helped him along, but soon he dropped again. As I helped him again, we heard a dog barking. He immediately panicked and tried to run away from the sound. It dawned on me that Dylan, with his hypersensitive hearing, had heard the dog all along, but its bark had been so distant that it hadn’t registered with me. What might have appeared as uncooperative, random, or defiant behavior was in fact a very understandable expression of fear.
That too is dysregulation.
Many children with autism flap their arms, either as an expression of their level of excitement or to calm themselves. When Conner felt joyful, and sometimes when he was anxious about a transition between activities, he did what his parents called his “happy dance.” He stood on his toes and stepped forward, then back, while flicking his fingers in front of his eyes. An earlier therapist had advised Conner’s parents to respond with a firm “Hands down!” And if he didn’t comply: “Sit down, sit on hands!” (To their credit, his parents ignored the suggestion, instead helping Conner to label his feelings or easing transitions by telling him what to expect.)
It’s easy to dismiss flapping or rocking or dancing as just so much “autistic behavior.” But parents raising children with autism, and the professionals who work with them, need to take an extra step. Like detectives, we need to examine and consider all available clues and work to discern what is underlying or triggering a particular reaction. What is making the child dysregulated? Is it internal or external? Is it visible? Is it in the sensory realm? Is it pain, or physical discomfort, or a traumatic memory? In most cases the child can’t explain the behavior in words, so it’s up to those close to him to sort through the clues.
Coping Strategies and Regulating Behaviors
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.
When I return home from a day of work, I immediately check the mailbox, then sort the mail, placing bills in one pile, magazines in another, and tossing what I don’t need in the recycling bin. It would take a significant distraction for me to skip that small but important ritual; then I would feel out of sorts on some level until I took care of it. It’s a calming routine; it’s how I come home. When my wife has had a bad day or feels worried, she organizes and cleans. If I come home and find our home more immaculate than usual, I know that something is bothering her. 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. Copyright 2015 by Childhood Communication Services Inc. Reprinted with permission of the publisher. All rights reserved.