Uniquely Normal: Tapping the Reservoir of Normalcy to Treat Autism - Softcover

Robert J. Bernstein (author)|Robin Cantor-Cooke (With)|Temple Grandin (Foreword By)

Softcover

ISBN 10: 1941765467 ISBN 13: 9781941765463

Publisher: Future Horizons, 2017

Synopsis

2018 IPPY Gold Medal Award Winner in the Mental/Psychology category. 2017 Best Books Award Winner in the Mental/Psychology category and 2018 Next Generation Indie Book Awards in the Parenting/Family category, "Uniquely Normal: Tapping The Reservoir of Normalcy To Treat Autism". Author Robert J. Bernstein has found a different approach based on cognition thinking in helping people of all ages with ASD. Author's goal is for people with ASD to be able to live in the world and connect with the people in it as themselves, to express their unique humanity and engage more fully in the human interactions that give life meaning and make it worth the effort of getting out of bed every day. Author believes that whatever he does therapeutically must be on the ASD individual's terms; he or she must lead. Author's therapy examples are categorized by age groups of: 2-5 years of age, 6-10 years of age, 11-14 years of age and 19 years of age and up.

About this title

About the Author

Robert J. Bernstein has been treating children on the autism spectrum for more than 30 years. He consults for numerous organizations, including the National Council on Alcoholism and Other Drug Dependencies, and was publicly acclaimed for pioneering table tennis as a means to facilitate social interaction among young people with autism. His work with a previously nonverbal child whom he helped learn to speak was documented in the New York Times. He has appeared on Dateline NBC and national radio; hosted "Educating Your Child," a call-in radio show; and conducted dozens of seminars and presentations, including "First Responders and Individuals with Autism: Averting Crises and Preventing Disastrous Consequences," the first conference of its kind in Westchester. He received his graduate training at Teachers College, Columbia University, and lives in Westchester County, New York.

Excerpt. © Reprinted by permission. All rights reserved.

Uniquely Normal

Tapping the Reservoir of Normalcy to Treat Autism

By Robert J. Bernstein, Robin Cantor-Cooke

Future Horizons, Inc.

Copyright © 2017 Robert J. Bernstein
All rights reserved.

ISBN: 978-1-941765-46-3

Contents

Author's Note, xi, 
Foreword, xiii, 
INTRODUCTION: Stranger in the Strangest Land: Into the Landscape of Autism, 1, 
PART 1: EARLY CHILDHOOD, AGES 2-5, 35, 
Janie, 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.Qg can't remember wife's requests.), 375, 
Afterword, 387, 
References, 391, 
Acknowledgments, 393, 
About the Authors, 401, 

CHAPTER 1

JANIE, 2½

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?"

"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?"

"Cow."

"Did the dog go outside, Janie?"

"No."

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.

(Continues...)

Excerpted from Uniquely Normal by Robert J. Bernstein, Robin Cantor-Cooke. Copyright © 2017 Robert J. Bernstein. Excerpted by permission of Future Horizons, Inc..
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Edition details

• Publisher: Future Horizons
• Publication date: 2017
• Language: English
• ISBN 10: 1941765467
• ISBN 13: 9781941765463
• Binding: Paperback
• Number of pages: 336