|Publisher:||Future Horizons, Inc.|
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Nonverbal; acts startled when other children come near her.
When Janie's mother phoned to make an appointment, she didn't hold back. "We're desperate," she said. "My husband and I honestly don't know what to do." A reputable pediatric neurologist had diagnosed their 2½-year-old daughter with both pervasive developmental disorder and a phobic aversion to being touched. Now the mother sat in my office crying because, in addition to the medical diagnoses, the preschool psychologist had informed her that Janie had autism and would never speak normally. "My husband isn't helping matters," she said, dabbing her eyes. "He says to stop worrying, that Janie will get by on her looks." I glanced at the child, whose round face was dominated by large, dark eyes and surrounded by a halo of softly waving hair. She was indeed pretty, but no child is pretty enough to be taught that looks are enough to get her through life.
I asked the mother if Janie had friends, and she replied that she had been making up excuses when other parents invited Janie over to play. "I can't bear to see her jump every time someone comes near her," she said. "It's easier if we just play together at home." This was good: Not all parents have the patience to play with their atypical kids. On the other hand, it is important for kids on the spectrum to play with other kids, especially neurotypical kids, so they can develop awareness of how human interactions work. I ushered the mother into the waiting room and joined Janie on the floor.
First impression: inconsistent responses; unintelligible speech. As we started playing with various toys and puzzles, Janie's responses followed no discernible pattern. I handed her a wooden puzzle, the kind with pieces that fit into matching recessed areas and have little pegs to make the pieces easy to manipulate. This one had different colored circles in increasing sizes. Janie would remove circles in no particular order, willy-nilly, sometimes replacing them in random slots and other times dropping them on the floor. When I asked her repeatedly which was the biggest circle, she looked at me blankly. I brought out a set of colorful plastic rings that sat on a spindled base from largest to smallest, dumped off the rings, and invited Janie to replace them on the spindle. She dropped the biggest one on first, then added the second-smallest ring, saw it didn't belong there, removed it, and replaced it with the second-biggest one. But when it was time to add the smallest one at the top, she walked away. During her second attempt, she put the second smallest ring on the spindle too early and was astute enough to remove it, but was unable to place it correctly when its time had come. It was as if she could see each ring individually but neither the relationship between them nor how they formed a tapering tower.
I pressed on. When I placed a shape-sorting toy in her lap, she just looked at it. Later, I saw her staring at a colorful ball. "Janie, what do you want? Do you want the ball?" I kept asking. She brought her lips together and mumbled something that sounded like "buh," sat, and waited. Next I placed a toy xylophone in front of her and handed her the mallet, which she used to hit the bars from left to right, largest to smallest, lowest pitch to highest, over and over again. She never altered the order in which she struck the bars; it was always the same. I tried placing my hand over hers and directing it toward the opposite end of the instrument but she resisted; she only wanted to strike the bars from left to right.
Then something struck me: when I touched Janie's hand she didn't flinch, but continued to play with my hand atop hers. In fact, we had touched numerous times as I handed her things, but not once had she seemed to notice the contact, let alone been disturbed by it. This was odd for someone who had been diagnosed with a phobic aversion to being touched. Janie seemed comfortable with me in my office; was there something about the day care environment or the other children that made her anxious? I decided to find out.
Janie at day care. With the blessing of Janie's mother and day care teacher, I settled into a small chair at the back of the playroom. Children were milling about, including Janie's younger brother. Everyone was occupied except Janie, who stood off to the side looking disoriented. She watched the other children playing but held herself apart. She sometimes followed the teacher's instructions, as when she invited the kids to converge at a table for snack. I asked Janie if I might have one of her goldfish crackers six or seven times before she responded and gave me one. Later, I asked if I might play with a stuffed pony she wasn't using but she didn't respond. She mimed pouring herself a cup of tea from a tiny pot, but when I asked her to pour one for another child, she did not respond. It seemed that when she was playing on her own she could function at a slightly higher level, but regressed when prompted to interact with others. I watched as a small girl approached Janie, took her arm, and tried to lead her toward a pile of costumes. Janie looked momentarily startled, and then resumed her dazed expression. She didn't seem to be exhibiting panic symptoms: Her breathing didn't escalate, nor did she look frightened. This didn't look like anxiety to me but rather like profound self-absorption, as if Janie were utterly unaware of her environment, as infants are. Babies see everything as extensions of themselves, including the adults who care for them. It takes a while for them to comprehend that they are autonomous beings existing among other such beings, that they are separate from everyone and everything around them. Might it be possible that Janie's cognitive development was delayed and still in a phase where she perceived herself as unified with the objects and people around her? Was she uncomprehending of the concept that others could enter her world and make contact with her, whether she willed it or not? If so, that would explain why she was startled whenever anyone touched her. Perhaps it wasn't a phobia at all, but the response of a much younger child who is unable to see herself as an autonomous entity, neither bound to nor in control of her surroundings.
Priority: Determine if Janie can see herself as separate from her surroundings. I tested my theory when Janie came to see me the following week. There's a double-hung window in my office that looks out on a busy street. I brought out figurines of a dog and a cow and placed them on the inside sill. I then opened the window a few inches and set the cow on the outside sill. Janie stood next to me, watching the whole operation.
"Did the cow go out?" I asked.
"No," Janie replied firmly. She was mistaken, of course, but this didn't surprise me: If my theory was right and Janie saw herself as one with everything around her, she would perceive the cow as inside because she was inside. I rephrased the question.
"Who went outside, the dog or the cow?"
Hah! Something had changed: Janie had distinguished outside from inside. But did she really understand? I repeated the question, reversing the order of the animals to see if she would merely repeat her previous response.
"Who went outside, the cow or the dog?"
"Did the dog go outside, Janie?"
By answering correctly the same question posed differently, Janie had established that she understood that the cow had indeed gone outside, even though she herself had not — a small step, perhaps, but an important one on a journey of emergence from an egocentric world. And it was Janie who had to take the step: I would have done her no favors had I made it easy for her. When a child needs help understanding a concept, it is important to give her as little help as possible so she will rely on her own resources and crystalize the concept herself. If you offer your child too much help, she need not think for herself; she need only receive information by listening to you and following your lead. Had I led Janie toward a desired outcome — asked her, perhaps, "Did the cow go outside?" while nodding my head and smiling approvingly — I would have telegraphed the answer I wanted and she would have gladly provided it, learning nothing other than how to please her adult companion. Instead, she was forced to rely on her innate intelligence and think for herself, and she came up with a response that mirrored reality. My priority — and yours — is not to program your child to deliver a desired response but to elicit an authentic one, whatever it is, and to work from there.
Next goal: help Janie recognize things outside herself. I came up with activities that would introduce and reinforce Janie's perception of the boundaries between herself and others. I held my hands behind my back with a penny in one of them, presented her with both fists, and challenged her to guess which one held the coin. This forced her to understand that it was I, not she, who chose which hand held the coin; it also compelled her to interact with me in a predictable sequence: I'd present my closed hands, repeatedly ask her to choose one until she complied, unfold whichever hand she had chosen and reveal whether or not she had chosen correctly, and start again. We played this game probably two dozen times.
Another thing I did was prod her into sharing a toy with me. When she became absorbed in moving the beads on an abacus, I kept my hands in my lap and asked, "May I have a turn?" No response. Then I asked again, reaching my hand out as if expecting her to hand it to me. After repeating this four or five times, she began to hand me the toy. As before, this exercise required Janie to acknowledge my presence and interact with me, something she did not do at the beginning of our work together.
Another exercise: Every week I would hand her a half-filled watering can and ask her to water the snake plant in the corner of the room. She would take the can from me without speaking, walk over to the plant, and pour the water in. About three weeks into this activity, I handed her the can, only this time, I hadn't put any water in it. When she tipped the can and no water came out, she peered inside, turned to me, and said, "empty" (with some indignation, I might add). Developmentally, this was a huge leap: Janie had spoken a word that emanated from within, reflecting her perception that the can was empty and, I surmised from her tone, annoyance that I expected her to water a plant without water. I had set up an activity that had no connection with language, and, for weeks, Janie had participated without speaking. Now she had spontaneously uttered a coherent response, a word connected to both thought and feeling — a word, in fact, that was neither what I was expecting nor hoping to hear. When I work with children who do not speak, I don't care which words they say or how well they say them as long as the words come from within. My goal is to elicit undefined language, which means I don't know what I'm going to get. Whatever I do get, that's what I work with.
Helping Janie identify her "self." To help Janie begin to experience herself as an individual, I gave her choices. I brought a package of goldfish crackers and a small box of raisins one day and offered both as a snack (full disclosure: I already knew from Janie's mother that she did not like raisins). When Janie reached for the goldfish, I prodded her to use words: "Do you want goldfish?" "Yes." "Do you want raisins?" "No." "Do you like goldfish?" "Yes." "Do you like raisins?" "No." By choosing goldfish over raisins and verbalizing what she liked and what she didn't, Janie reinforced her growing understanding that she was an autonomous being with the ability to make choices that pleased her. And, by asking open-ended questions — "Do you want goldfish?" rather than "You like goldfish more than raisins, don't you?" — I pushed Janie to consider her preferences without being influenced by me. To help children understand how language confers power to control their lives, we must give them a reason to say no. Offered this option, Janie rejected the less appealing option in favor of the more attractive one and began to understand that words can bring pleasure, satisfaction, and control.
Until now, Janie had spoken only single words — cow, dog, yes, no. At our fifth weekly session, I held up a sealed bottle of water and asked who should open it. Over and over I asked, "Janie, who should open it? Who should open the bottle?" as she tried to wrest it from my hands. I then added a response: "Who should open the bottle? You open the bottle, Rob. Who should open the bottle? You open it, Rob." When I asked again, Janie looked at me and said, you. Was she just parroting me? Maybe. So I kept asking: "Who should open the bottle? Who do you want to open it?" — and, to my surprise, she grasped the cap with her hand. "Who should open it, Janie? Do you want to open it or should I open it?"
And she said, "I ohp bah ..."
"Okay. You open it," I said. Then Janie spoke again.
"I open the bottle," she said. The words were imprecisely pronounced but their meaning was clear. Janie had spoken her first sentence.
Janie's mother began reporting new accomplishments. In a restaurant, Janie heard a baby crying and pointed toward the infant, the first time her mother witnessed her acknowledging that a sound had meaning. In her pediatrician's waiting room, she approached another girl and joined her in play. Her day care teacher reported that Janie was becoming more sociable with the other children.
Acquainting Janie with the concept of time. I continued to meet with Janie every week, often conducting what I call window therapy: standing at the window and talking about what we saw outside. Window therapy is useful for illustrating concepts such as outside and inside, as well as the passage of time. As people, animals, and assorted vehicles approach the window, pass beneath it, and disappear, I have numerous opportunities to introduce the concepts of before, during, and after.
The first time I asked Janie what she saw outside, she said "sun," which would have been a triumph had the sky not been obscured by clouds. "Sun" was an automatic response, similar to the drawings kids produce when you ask them to draw a picture of where they live, and, 99.9% of the time, they draw a bright orange disk radiating stick-like rays in a bright blue sky. I don't think there's much data on sun-in-the-sky crayon technique, but my guess is that kids use it because that's what they think they're supposed to draw: They are pleasing adults who will be delighted to see they have created such a cheerful, pretty scene.
But pretty wasn't the goal; real was. I kept at it with Janie, asking her every week what she saw when she looked out the window. At first, she offered one-word answers; later, she began to speak about seeing a school bus, a big dog, a car going fast, birds on telephone wires. She was now stringing several words together, which was good. But after a car sped past or the birds flew away and I asked her what she had seen, she was silent: Janie was utterly flummoxed by the idea of having seen something that was no longer there. She couldn't grasp the notion that something could continue to exist when she could no longer see it: The concept of past was on a cognitive level she had yet to achieve.
Still at the window, I heard a siren in the distance that was growing louder. A few seconds later, a fire engine sped past, siren blaring, a streak of loud red noise that was suddenly there and then gone. Janie pointed with excitement and jumped up and down. I seized the moment.
"What was that, Janie? What did we see?" After several repetitions, Janie answered, "Fire truck." I kept at it, asking her over and over again about what we heard, what we saw when the fire truck first came into view, what color it was, what we saw, what she had seen. I talked about that fire truck until it became a fixture of the past. And when I say I talked about it, I mean I spoke of it over and over and over again, 20 or 30 times. When Janie's mother arrived half an hour later, I said, "Your mom wasn't here when we were at the window and she doesn't know what we saw. What did we see?" And Janie said, "Fire!"
Normal conversation has the past, present, and future built into it, which makes it an ideal medium to instill the concept of time. Rather than try to make the concept more accessible to Janie by using simplistic words, my strategy was to use regular conversation to spark understanding. You can do this too, of course; there are countless opportunities every day to deploy language to suggest the notion of past, present, and future. You just have to improvise on whatever the moment tosses your way.
For example, "Do you want to go outside?" is a question that not only has a built-in future — being outside — but also an implied delay. Going outside is instantaneous only on Star Trek; in earthly life, someone usually has to use the bathroom first, or find a sweater, or hunt for a cell phone. Anticipation is a critical part of understanding the future. With Janie, I worked on anticipation by asking if she would like to go outside and get some ice cream. When she expressed enthusiasm, I said, "First I have to get my keys, and then we will go outside." I didn't know if Janie understood why I had to get my keys, but I did know I had to start instilling this concept in a child who lived almost entirely in the present.
Excerpted from "Uniquely Normal"
Copyright © 2017 Robert J. Bernstein.
Excerpted by permission of Future Horizons, Inc..
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Table of Contents
Author's Note xi
Introduction: Stranger in the Strangest Land: Into the Landscape of Autism 1
Part 1 Early Childhood, Ages 2-5 35
Janic, 2½ (Nonverbal; acts startled when other children come near her.) 37
Luke, 2½ (Nonverbal; near constant stimming.) 57
Ivan, 4½ (Nonverbal; responds to gestures and visual cues.) 69
Part 2 Childhood, Ages 6-10 81
Jeff, 6 (Nonverbal; bites hand to ease stress.) 83
Addison, 6 (Verbal; energetic; highly distractible.) 95
Hank, 6½ (Verbal; energetic; provocative.) 109
Jeremy, 6½ (Nonverbal; paces; screams; does not interact.) 123
Freya, 7 (Nonverbal; disengaged; blank expression.) 135
David, 7 (Nonverbal; disconnected; "the kid with the straw.") 145
Daisy, 10 (Wild; aggressive; never smiles.) 151
Part 3 Early Adolescence, Ages 11-14 161
Hunter, 11 (Self-absorbed; obsessive; demanding.) 163
Patrick, 11 (Severely autistic; nonverbal.) 175
Samantha, 11 (Very intelligent; inexplicable academic decline.) 185
Mitch, 11 (High-functioning; perfectionistic; has frequent tantrums at school.) 191
Cory, 13 (High-functioning; perfectionistic; inflexible.) 205
Jared, 12 (High-functioning; inflexible; perseverative; yells.) 215
Part 4 Adolescence, Ages 15-18 229
Max, 15 (Repetitive, antisocial behaviors; disjointed thinking; minimal language.) 231
Harriet, 15 (Nonverbal; disengaged; blank expression.) 243
Ken, 16 (High-functioning; socially awkward; anxious; obsessive.) 255
Kaitlyn, 16 (Perseverative; nonverbal; physically aggressive.) 269
Marty, 16 (Highly intelligent; gifted artist; perfectionistic; acts in memorized preset patterns.) 279
Ned, 17 (High-functioning; intelligent; unable to think spontaneously.) 291
Richard, 17 (High-functioning; has trouble thinking sequentially; ate alone every day in high school.) 305
Part 5 Young Adulthood & Beyond, Ages 19 & Up 319
Adam, 22 (High-functioning; college graduate; yearns for girlfriend.) 321
Alex, 24 (High-functioning; college graduate; distrustful; lonely; can't make decisions.) 345
Jordan, 30 (Highly intelligent; lives independently; has test-taking anxiety.) 363
George, 62 (Retired scientist; genius I.Q.: can't remember wife's requests.) 375
About the Authors 401
What People are Saying About This
Robert Bernstein is one of the smartest, most perceptive people I know. No matter where someone falls on the scale of "normal”, Bernstein finds a way to connect.
Crossword Editor, The New York Times
“You rock! You do, you rock! It’s been amazing. There is no way we would have gotten this change out of him if we were not taking him to see you. He’s done a lot in just the last couple months. We tried other therapy sessions and it didn’t mesh. It’s been unbelievable. He loves coming, he does, he loves coming here.”
- N.R., Parent, Bronx, NY
“Without exception, Rob Bernstein’s work with these patients has markedly improved their ability to function effectively with others. He has a unique ability to engage with people, gently yet firmly coaxing them into the wider world, often for the first time. Once there, he guides them toward claiming their competence and channeling their untapped strengths. I stand behind Rob Bernstein’s techniques without reservation.”
- Ram Kairam, MD, Pediatric Neurologist, Developmental Neurology Associates (DNA); Professor of Neurology, Columbia University Medical Center
Foreword by Dr. Temple Grandin
"Bernstein has mapped out a practical path for parents to increase the skills and independence of kids on the autism spectrum while respecting their ways of experiencing the world, supporting their autonomy, and avoiding the traumatizing methods of ABA and other purely behavioral approaches."
- Steve Silberman, author, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity
"Rob Bernstein offers a compelling and engaging model in the treatment of autism. This is an enjoyable and informative read for anyone who has a person with autism in their life. - Mark Krakauer, MD, Pediatrician
Bernstein’s methodology, developed after years of experience in the present educational system (which clearly fails most of these individuals), demonstrates a revolutionary cognitive approach to autism that departs from current practice. It is a must-read for all parents and professionals dealing with children with autism.
Douglas P. Hudson, MD, MPH
“Uniquely Normal is a uniquely insightful study of human nature. Groundbreaking in what it reveals about the autism spectrum, it simultaneously speaks to the power of the great tradition of ethnographic research.”
- Steven L. Strauss, MD, Neurology; PhD, Linguistics; recipient of the John Dewey Award for Excellence in the Teaching of Children from Middlebury College
“Let’s think of the ABA people. They cut all the natural ways, cut everything and strip it. Did they want a recipe for the masses? I’m truly thinking, why isn’t everybody thinking your way? Yours is a common sense approach. It’s easy to see it as a disease and treat it like one, but you don’t see it as a diseaseyou invite them in the natural world, you force them to come to the natural environment. They don’t.”
- I.T., Parent, Ladera Ranch, CA
“Never in a million years did I think Mr. Bernstein would empower Jack to take the quantum leap out of "his own world", conceptualize everyday society, and land in our typical world. It was, and still is, the amazing breakthrough that continues to enable him to facilitate meaningful relationships with friends, family members, and acquaintances. I will never be able to repay this gift he has have given Jack, that has allowed our atypical son soar in our everyday society. We are no longer living in ‘Jack’s world’.”
Jennifer Betman, Parent, Jericho, LI
“He has really helped a lot of people over the years . . . every time I listen to Rob, I get so inspired because he really has made a big difference in people's lives, and has eased the stress of a lot of parents. He is always the most interesting guest; he has never disappointed me. He has done a lot of wonders for people.”
- Paul Feiner, Greenburgh Town Supervisor (“The Greenburgh Report”, WVOX Radio, New Rochelle, NY)
“Uniquely Normal provides astounding insights into the fascinating minds on the autism spectrum, and much-needed guidance to parents of neurotypical and atypical children alike.”
- He Xu, PhD, Harvard University
“It’s just amazing what you do! It’s so amazing what you do that once you get it, I’m telling you, it’s like I’m like on drugsI’m in a trance now, I’m SO happy. You’re so different from 99% of the people I’ve met. If you just disappeared I would go nuts, because I finally got it! I’m so happy. I say, ‘Wake up everybody, There’s a new world out there’.”
- R.T., Parent, Chappaqua, NY
“A deeply moving account of the multi-faceted nature of autism, its course, and the power of believing in one's capacity to beas is. Bernstein, with Cantor-Cooke, takes the reader on a tender, textured, and experience-near journey that illuminates the clinical benefits of an individualized, patient-centered approach to treating individuals who have been diagnosed with autism. A must-read for anyone who has wondered about alternatives to Applied Behavior Analysis (ABA), recognizes the multilayered experience of an individual with autism, and, most movingly, believes in the transformative nature of a core human connection.”
- Lara Sheehi, PsyD, Assistant Professor of Clinical Psychology, The George Washington University
"Rob Bernstein's book presents a ground-breaking, clear, and well-reasoned alternative approach to working with children, adolescents, and adults with autism spectrum disorders. A must-read for parents, psychologists, teachers, and those who care for and nurture individuals with ASD.”
- Gloria S. Lazar, MS, MPhil, CCC, Speech-Language Pathologist
“I’m really excited. I’m totally blown away. It’s fantastic.
There’s such hope, more than hope, already I see it working.
This is unbelievable. Everything is possible. Thank you.”
- Eileen Fisher (talking about her son)
“You’re not your typical therapist, you think outside the box, which is great because John is not your typical Asperger’s. He’s unique in his way, and you’re unique in your way.”
- Coleen O’Rourke, Parent, Eastchester, NY