|| 6.0 x 9.0
Everyone who cares for or works with a child with autism will wear out their copy of this book—a "helpline" they can turn to again and again for concrete, practical interventions that really work. Trusted authority Travis Thompson, author of the bestselling Making Sense of Autism, takes readers beyond understanding the disorder and reveals specific ways to help children overcome everyday challenges and develop critical skills they'll use their whole lives. Based on the latest research and the author's extensive clinical experience, these ready-to-use tips and strategies will help children with autism spectrum disorders meet their toughest challenges head-on:
- communicating more effectively
- making improvements in behavior
- increasing their tolerance for change
- developing social skills
- establishing secure, trusting relationships
- recognizing and reacting to emotions
- overcoming stimulus intolerance
- engaging in recreation and leisure activities
- enjoying greater participation in their community and family lives
Engaging illustrations throughout the book show children with autism participating in a wide variety of activities, and the sample pictorial schedules will help readers guide children successfully through everyday routines. A straightforward, easy-to-read sourcebook for anyone new to helping children with autism, this guide offers simple, specific strategies that improve quality of life—for children and for whole families.
Review: Journal of Autism & Developmental Disorders
"Parents of children on the spectrum will find a treasure-trove of helpful ideas...[and] professionals will find this an invaluable reference guide when working with families."
Review: ADVANCE for Physical Therapists & PT Assistants
"[Dr. Thompson] has a direct understanding of the challenges presented to families, which is refreshing to parents who often struggle to find a truly understanding ear."
Review: Columbus Parent Magazine
Review: NADD Bulletin
"Well crafted….Recommended for care providers, as well as professionals involved with the care of persons with ASDs."
"Offers ready-to-use tips and practical strategies to help parents and their children meet the challenges presented by autism."
Review: Metro Spirit
"Dispelling false tales, providing clinical expertise for many activities, and delivering inspirational as well as practical advice . . . [this is] a guidebook worthy of a celebration."
Review: About.com: Parenting Special Needs
"A clear winner ... Very competent and confident."
Review: Parents' Press
"Bring[s] the reader inside the mind of a child [with autism], showing us the how and why of difficult, frustrating behaviors."
Review by: Robert Naseef, psychologist; author, Special Children, Challenged Parents; co-editor, Voices from the Spectrum
"With clarity and brilliance Dr. Thompson synthesizes what we know, what we don't, and how to deal effectively with the essential challenges in the home and school that are presented by children growing up with autism."
Review by: Fred Volkmar, M.D., Director, Child Study Center, and Professor, Yale University School of Medicine
"[T]reasure trove of information on autism for parents and teachers alike . . . wonderful."
Review by: Samuel L. Odom, Ph.D., Director, FPG Child Development Institute, University of North Carolina at Chapel Hill
"If there was one book I could give individuals, especially parents, who had questions about autism, this would be it."
Review by: Kammy Norman Kramer
"Dr. Travis Thompson has created something amazing. Though my son was diagnosed with PDD-NOS 4 years ago, I felt like for the first time I was able to 'connect' with him through the pages of this book in a way I have never been able to do."
Review by: Craig H. Kennedy, Ph.D., BCBA, Chair, Special Education Department, Vanderbilt University
"This book provides easily accessible information about autism that is factually accurate and evidence based. A must have for anyone who knows a person with autism."
Review by: Douglas And Etta Overland, parents of a son with autism
"Points a family in the right direction and presents practical suggestions on what to do. We wish we'd had this book back nearly forty years ago."
Review by: Karen Simmons, Founder and CEO, Autism Today; co-author, Chicken Soup for the Soul, Children with Special Needs
"A refreshing resource! Dr. Thompson cuts to the chase, highlighting the most relevant facts, stats and straight talk for spectrum issues to date."
Review by: Donna Williams, Dip Ed, BA Hons, author of Autism; An Inside Out Approach and The Jumbled Jigsaw; autism consultant and public speaker
"An easy-to-follow road map for parents to actively and affordably become involved in bringing up emotionally healthy children with ASD . . . also provides teachers with the frameworks with which to better build inclusive teaching practices."
Review by: Susan Moreno, A.B., A.B.S., Founder and President of MAAP Services for the Autism Spectrum; editor, The MAAP; parent of a woman with autism
"What sets [Thompson] apart from other brilliant and well-informed authors . . . is his positive attitude, his compassion, and his incredible ability to make complex information seem simple and clear to the average reader."
Review by: Ann Turnbull, Beach Center on Disability, University of Kansas
"With this book, Travis Thompson wins the "triple crown" for knowledge translation - best available research, state-of-art clinical practice, and family wisdom (as the grandfather of a youngster with autism). His triple crown expertise permeating this book is sure to make quality of life enhancements for children with autism spectrum disorders and their families."
About the Author
Foreword Paula F. Goldberg
- A Road Less Traveled: Autism Spectrum Disorders
- Need for Control
- Time Is Your Enemy
- Once Upon a Time: Discovering the Mystery of Words
- Relationships and Feelings
- Letting the Genie Out of the Bottle: Promoting Socialization
- Nothing Is Easy: Overcoming Stimulus Intolerance
- Putting Out Fires: Coping with Behavioral Challenges
- Daily Freedoms and Responsibilities
- The Importance of Leisure
- The Art of Living Together: Community Participation
Excerpted from Chapter 2 of Dr. Thompson's Straight Talk on Autism, by Travis Thompson, Ph.D.
Copyright © 2008 by Paul H. Brookes Publishing Co. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Moment–to–moment events of daily life seem utterly out of control to many children with ASDs. Their life appears to them to be chaotic and unpredictable. In his astute description of autism, Leo Kanner wrote,
"The child's behavior is governed by an anxiously obsessive desire for sameness that nobody but the child himself may disrupt on rare occasions. Changes in routine, of furniture arrangement, of a pattern, or the order in which everyday acts are carried out, can drive him to despair." (1943, p. 245)
"Objects that do not change their appearance and position, that retain their sameness…are readily accepted by the autistic child. He has a good relation to objects…When with them, he has an undisputed sense of power and control. "(1943, p. 246)
NEED FOR CONTROL
With these insightful words, the man who provided the first detailed clinical account of autism captured one of the most important features of ASDs: need for control. Parents often see a child who is obstinate and displays tantrums, teachers see a child who is being oppositional and refuses to follow directions, and friends and relatives see a spoiled child who must have his or her own way. When I see a child with an ASD displaying such frustrating, challenging behavior, I try to remind myself of Kanner's words: "Changes…can drive him to despair" (Kanner, 1943, p. 245). It is difficult for anyone to be truly effective at parenting, teaching, or providing therapy services to a child with autism without fully grasping the depth of distress a child with an ASD experiences when he or she feels that he or she has no control over a world that seems in unpredictable disarray.
Children's Early Learning About Gaining Control
Young children, including those with ASDs, experiment from a very early age with strategies for controlling things and people around them. Carmen, who has an ASD, is seated in her highchair. She holds her spoon out and releases it. It goes downward and makes a noise as it hits the floor. That is really quite interesting. She does it again, and the spoon always falls downward and makes a clanging noise. She soon discovers that she can also make her parents do things the same way. When she drops her spoon on the floor and it makes a noise, her mother, Maria, bends down and picks it up. She tries that a few times and it always works: Her mother or father always bends down and picks up the spoon and returns it to her. Next she discovers that if she drops her spoon so it falls under the dinner table she can make her father, Silvio, get down and crawl around on his hands and knees. That's even more interesting. When her father retrieves the spoon and hands it to the girl, he opens his mouth and sounds come out (e.g., "Now don't do that again!"), which the child doesn't understand, but it's very interesting, nonetheless. She rather likes the sounds when he opens his mouth, but she is confused by his facial expression, which seems to be different from usual.
Children discover that if they put a block in a particular place on the floor, crawl across the floor, and then return to the block, it is still in the same place. That is reassuring to a child with an ASD. A child with an ASD learns very quickly that things like blocks and stuffed bears are predictable. Once the child does something with them they stay put, but people are different. After the fourth or fifth time Carmen drops her spoon on the floor, instead of her father retrieving it, he stands up and takes her out of her highchair and places her on the floor and says, "All done," which she doesn't understand, but she realizes there is no more food. Carmen begins crying and screaming. It wasn't supposed to work that way. It is very annoying to a child with an ASD when adults keep changing the rules.
Children with ASDs learn very early that if they want to reliably cause their parents to do things, their own actions have to be dramatic. It isn't as easy to make adults do things as it is to make a clown pop out of a box when you push the button. If a boy with an ASD screams and cries, he discovers that it causes his mother to pick him up and hold him. If he continues to cry more loudly, his mother rocks him and bounces him on her knee and sounds come out of his mother's mouth (e.g., "It's going to be okay."). He doesn't understand what his mother is saying but at least she's holding him. Children with ASDs learn that in order to make parents behave in more predictable ways, they have to do things that are louder and involve screaming, crying, or throwing things. Children with ASDs quickly learn that their parents stop responding to less dramatic overtures. Adults are annoyingly unpredictable. Because children with ASDs don't have the skills to ask their parents for things or to be held or tossed up in the air and caught or to be sung to, they have to devise other ways to control their parents' behavior. That usually involves crying and throwing themselves on the floor and screaming, which reliably causes their parents to do things, sometimes in the way the child had wanted in the first place. Children learn that their parents always do something when they have an outburst. That makes parents more predictable. Children with ASDs usually learn that lesson between 18 months and 2 years of age.
Relation of Need for Control of Obsessive–Compulsive Disorder
Adults seldom realize that the smallest change, one they think is inconsequential, may be perceived as intolerable to a child with an ASD. The Thanksgiving dishes had been cleared from the dining room table and it was time for dessert. Pumpkin and apple pie were placed on the table along with ice cream for those who chose to indulge themselves. Grandma had made 6–year–old Tony's favorite dessert just for him, chocolate cake with thick, rich, creamy chocolate frosting. She placed his cake in front of him as others began savoring their pie à la mode on matching dessert plates. Tony sat motionless with an expression midway between horror and torment on his face. His sister Amelia said, "What's wrong, Tony? It's chocolate cake. You love chocolate cake!" Tony's lower lip began to quiver and a tear ran down his cheek. He sniffed and wiped the tear away with the back of his hand. He pushed the dish with the chocolate cake away as though to distance himself from it. The more his family encouraged him to try the cake, the more upset he became, eventually sobbing quietly as though he were in pain. At the opposite end of the dining room table, Tony's grandmother, a retired special education teacher, stood watching him intently. "Would you like your blue plate, Tony?" she asked. His head shot up and he nodded vigorously while sniffling and wiping away his tears on his shirtsleeve. She picked up his untouched dessert, took it into the kitchen, and returned with the same piece of chocolate cake on his blue plastic plate, the one in the shape of a puppy's head with the tongue hanging out in the corner for a spoon rest. It was the plate Tony had used for all of his meals at Grandma and Grandpa's house ever since he could remember. It was his plate. When Grandma placed his blue plate in front of him with the cake on it, he beamed with joy. Tony dug in and asked for seconds before others had finished their first piece of pie.
On a drive to the family farm up the interstate, the father of another child with autistic disorder decided to take a different exit because the side road they usually used was under construction. As their car passed their usual exit, his 5–year–old son who was seated in the back seat began screaming and hitting his father over the head, and though he seldom spoke, he shouted, "No, no, no!" In anguish, he pointed toward the "missed" exit.
Such compulsive need for sameness and control is a critical feature of ASDs. There is evidence that there are overlaps in symptoms of typically developing people with OCD and people with high–functioning ASDs. Russell, Mataix–Cols, Anson, and Murphy (2005) studied a group of adults with high–functioning ASDs and a matched group of adults with a primary diagnosis of OCD. They used standard psychiatric scales designed to measure OCD symptoms. They found that the two groups had similar frequencies of OCD symptoms with only bodily obsessions and repeating rituals being more common in the typically developing OCD group. Zandt, Prior, and Kyrios (2006) studied obsessions and compulsions in typical children diagnosed with OCD and high–functioning children with ASDs matched for age. The types of compulsions and obsessions tended to be less sophisticated in children with ASDs than those with OCD but were similar in other ways. Several studies indicate that parents with OCD or OCD symptoms are at an increased risk of having a child with autism suggesting a possible shared genetic mechanism (Abramson et al., 2005; Bolton, Pickles, Murphy, & Rutter, 1998; Hollander, King, Delaney, Smith, & Silverman, 2003). There is also evidence from brain imaging studies of possible brain similarities between OCD and autism. Hollander et al. (2005) found increased volume of a structure deep inside the brain (basal ganglia) of individuals with high–functioning ASDs similar to those observed in OCD patients (as compared with matched typical controls).
OBSESSIVE–COMPULSIVE EXPRESSION IN CHILDREN WITH AUTISM SPECTRUM DISORDERS
Children and adolescents with ASDs engage in several types of rituals that are similar to those seen in typical psychiatric patients with OCD as well as individuals with Tourette syndrome, which share common brain chemical differences
Obsessions are persistent, disturbing preoccupations often involving an unreasonable idea or feeling. According to the American Psychiatric Association, obsessions are recurrent and persistent thoughts, impulses, or images that cause marked anxiety or distress (1994). The thoughts, impulses, or images are not simply excessive worries about real–life problems. In a typically developing adult, the affected person is aware that the thoughts and feelings are irrational, but he or she can do nothing to stop them despite their efforts to do so. But in young children and individuals with developmental disabilities such as ASDs, they are generally not aware that their obsessions are irrational and that they arise from their own thoughts rather than from something provoking fear outside of themselves. Among the more common obsessions exhibited by people with ASDs are
- Emergency vehicles (e.g., fire trucks, police cars, ambulances)
- Frightening animals (e.g., snakes, spiders, vicious dogs)
- Television cartoon characters (e.g., villains, heroes)
- Video games (and associated characters)
- Water (e.g., bath tubs, showers, rain, swimming pools, lakes, rivers)
- Weather (e.g., tornadoes, hurricanes, lightening, thunder)
Although many typical children engage in fantasy play involving police cars and television cartoon characters, they can usually be easily redirected from these activities or interests. These activities usually occupy only a small portion of a typical day. For children with ASDs, however, it may be nearly impossible to change the topic when discussing terrifying weather or fire engines and fires. Moreover, they typically spend a substantial part of some days persistently talking about an obsession if permitted to do so. I was involved in evaluating a 6–year–old with PDD–NOS who was obsessed by the letter A. He thought about it constantly, printed the letter, cut out the letter from magazines, and stored the pieces of paper containing the letter A neatly in labeled boxes. During diagnostic testing, he took a special interest in the ADOS when he noticed on the manual that it started with the letter A. He complained that thoughts about the letter A kept intruding when he was trying to do something else, such as math problems. The letter A was a true obsession for this little boy.
I evaluated a 21–year–old young man with a high–functioning ASD some years ago who was obsessed with hymns. He knew each hymn in his church's hymnal by number and name and insisted on talking about hymns with anyone who would listen. Because few people were interested in talking about hymns, his parents had attempted to redirect his interest to other topics, but he became very agitated and at times aggressive if they refused to discuss hymns. While interviewing him I tried to shift the topic of conversation by asking if he watched television. He replied that he did, and then in the next sentence he explained that his favorite program on television was the 700 Club, a religious program that featured numerous hymns. That is typical of the obsession of a person with a high–functioning ASD.
Whereas obsessions are ideas or preoccupations usually manifested by persistently talking about specific topics, compulsions are intensely repetitive behaviors (e.g., hand washing, ordering, checking) or mental acts (e.g., counting, repeating letters or words silently) that the person feels driven to perform. In response to an obsession, a child feels compelled to follow specific rules in carrying out ritual compulsive behavior. In typical individuals these behavioral rituals seem designed to reduce distress or prevent some dreaded event or situation. But these obsessions and compulsive rituals are not connected in a realistic way with what they are designed to neutralize or prevent. They are clearly excessive and unrelated to any real threat or problem. Among the most common compulsions in typical adult psychiatric patients are those revolving around cleanliness and order, such as repeatedly washing hands, fastidiously checking clothing for spots or wrinkles, lining up objects, making certain all of the curtains in a room are exactly the same length, or repeatedly locking windows and doors to be absolutely certain they are locked. The person with a compulsion to do these things realizes that he or she is excessive and irrational and may even describe him– or herself as being "crazy," but the urge is so intense that he or she can't stop doing them.
Compulsions among individuals with ASDs vary with intellectual and verbal ability. Some compulsive rituals are similar to those of typical OCD psychiatric patients, such as insisting that the individual always eat off of the same plate and use the same cup and that the bottoms of the spoon and fork are precisely aligned on the dining room table. The child who was obsessed by the letter A had a bout of crying and extreme distress when his shirt got a spot of paint on it in school during an art activity. He had to change his shirt immediately; it seemed imperative for him to do so. Younger children and individuals with mild to moderate cognitive limitations are more likely to exhibit rituals that involve specific physical movements similar to those in Tourette syndrome. They may repeatedly flip light switches on and off or open and close closet doors. The movements are usually simple and repetitive and take almost precisely the same form on each occasion (see Figure 2.1). With higher–functioning children, compulsions usually involve more complex activities, such as running a toy popcorn popper across the floor for an hour at a time, or riding a tricycle in circles for hours. When a child is engaged in these activities, it does not appear that he or she is experiencing pleasure. To the contrary, he or she often displays an agitated glassy–eyed appearance. It is easy to see why parents and teachers use the expression "something has gotten into him" to describe these episodes.
Children with autism often visually fixate on shiny objects and use them for compulsive self–stimulation. Many children with ASDs are attracted to long thin objects, such as pencils or long–handled spoons, which they hold to one side of their face, waving to and fro, and peer at them out of the corner of their eye. No one understands the basis for this unique form of visual selfstimulation. Among children with poor language and more cognitive limitations, compulsions tend to involve nonfunctional materials or body parts, such as repeatedly twirling pieces of string, crumpling and throwing bits of paper, retaining saliva in the mouth and then spitting, or rocking backward and forward and flapping hands. Children with ASDs who have severe intellectual disabilities, with little or no language, are prone to the most disturbing compulsive rituals, such as twirling in circles for hours or banging their head with their fists or against hard surfaces, such as the floor, wall, or table. Self–injury will be discussed in detail in Chapter 10.
Various strategies have been used to reduce obsessive and compulsive rituals and behavior in children with ASDs. Behavioral intervention techniques can be helpful, but at times, especially in the most severe forms of destructively compulsive behavior, psychotropic medications are used as well. In the following section, I will discuss several behavioral techniques used to reduce the perceived unpredictability of the child's world and to provide a feeling that the child has more control of what is happening around him or her.