The Way I See It E-Book

Temple Grandin

• Herausgeber: Future Horizons
• Kategorie: Ratgeber
• Sprache: Englisch

Seitenzahl: 477

Veröffentlichungsjahr: 2020

Beschreibung

Dr. Temple Grandin gets to the REAL issues of autism―the ones parents, teachers, and individuals on the spectrum face every day. Temple offers helpful dos and don’ts, practical strategies, and try-it-now tips, all based on her insider perspective and a great deal of research. These are just some of the specific topics she delves into: how and why people with autism think differently, economical early intervention programs that work, how sensory sensitivities affect learning, behaviors caused by a disability vs. just bad behaviors, teaching people with autism to live in an unpredictable world, alternative vs. conventional medicine, and employment ideas for adults with autism.

Leseprobe

The Way I See It:A Personal Look at Autism

All marketing and publishing rights guaranteed to and reserved by:

800-489-0727 (toll free) 817-277-0727 (local) 817-277-2270 (fax)E-mail: [email protected]© 2020 Temple GrandinCover and interior design, John Yacio IIIAll rights reserved.Printed in the United States of America.

Cover and interior photos © Rosalie Winard: Cow photo in chapter title collage, author bio, and central photos on titles for chapters 2, 3, 8, and 9.

Chapter 4 title image © Angus Bremner.

No part of this product may be reproduced in any manner whatsoever without written permission of Future Horizons, Inc, except in the case of brief quotations embodied in reviews.

This book is unedited for content. Any opinions are those of the author and are not necessarily shared by the publisher.

ISBN: 9781949177312

Contents

Foreword

Foreword to the Second Edition

Foreword to the First Edition

For Readers New to Autism

Introduction

Chapter 1: The Importance of Early Education

The Importance of Early Educational Intervention

Do Not Get Trapped by Labels

Economical Quality Programs for Young Children with ASD

Different Types of Thinking in Autism

Higher Expectations Yield Results

Teaching Turn Taking

What School Is Best for My Child with ASD?

Chapter 2: Teaching & Education

Finding a Child’s Area of Strength

Teaching How to Generalize

The Importance of Developing Talent

Teaching People on the Autism Spectrum to Be More Flexible

Teaching Concepts to Children with Autism

Bottom-Up Thinking and Learning Rules

Laying the Foundation for Reading Comprehension

Motivating Students

Getting Kids Turned On to Reading

Too Much Video Gaming and Screen Time has a Bad Effect on Child Development

Therapy Animals and Autism

The Importance of Choices

The Importance of Practical Problem-Solving Skills

Learning to Do Assignments That Other People Appreciate

Learning Never Stops

Chapter 3: Sensory Issues

Sensory Problems Are Variable

Visual Processing Problems in Autism

Auditory Processing Problems and Sound Over Sensitivity in Autism

Incorporating Sensory Methods into Your Autism Program

The Effect of Sensory and Perceptual Difficulties on Learning Patterns

Environmental Enrichment Therapy for Autism

Chapter 4: Understanding Nonverbal Autism

A Social Teenager Trapped Inside

You Asked Me!

Why Do Kids with Autism Stim?

Tito Lives in a World of Sensory Scrambling

Understanding the Mind of a Nonverbal Person with Autism

Solving Behavior Problems in Nonverbal Individuals with Autism

Whole-Task Teaching for Individuals with Severe Autism

Chapter 5: Behavior Issues

Disability versus Just Bad Behaviors

My Experience with Teasing and Bullying

Rudeness is Inexcusable

The Need to Be Perfect

Autism & Religion: Teach Goodness

Chapter 6: Social Functioning

Insights into Autistic Social Problems

Learning Social Rules

Emotional Differences Among Individuals with Autism or Asperger’s

Healthy Self-Esteem

Four Cornerstones of Social Awareness

Questions about Connecticut Shooter Adam Lanza, Asperger’s Syn drome, and SPD

Chapter 7: Medications & Biomedical Issues

Alternative Versus Conventional Medicine

Autism Medical Update

Hidden Medical Problems Can Cause Behavior Problems

Evaluating Treatments

Medication Usage: Risk versus Benefit Decisions

My Treatment for Ringingin the Ears

Chapter 8: Cognition & Brain Research

Chapter 9: Adult Issues & Employment

Improving Time Management and Organizational Skills

Employment Advice: Tips for Getting and Holding a Job

Teens with ASD Must Learn Both Social and Work Skills to Keep Jobs

Happy People on the Autism Spectrum Have Satisfying Jobs or Hobbies

Inside or Outside? The Autism/Asperger’s Culture

Portfolios Can Open Job and College Opportunities

Going to College: Tips for People with Autism & Asperger’s

Finding Mentors and Appropriate Colleges

Reasonable Accommodation for Individuals on the Autism Spectrum

Get Out and Experience Life!

Can My Adolescent Drive a Car?

Innovative Thinking Paves the Way for AS Career Success

Try on Careers

The Link Between Autism Genetics and Genius

My Sense of Self-Identity

Tony & Temple: Face to Face

Bibliography

About the Author

Foreword

I have known Temple for over twenty-five years and have always admired her understanding of autism, which is based not only on her personal experiences but also her extensive knowledge of the research literature. Temple has an amazing ability to entrance audiences and readers with her insights and explanations. She is a very forthright person, and I can “hear” her voice on every page.

Temple’s revised The Way I See It is a compilation of articles from the Autism Asperger’s Digest over twenty years. It is interesting that her insightful conceptualization of autism over two decades has continued to be confirmed by independent research and clinical experience.

This revision covers a wide range of topics across the entire autism spectrum, from self-injurious behavior and communication difficulties in severe autism to issues regarding college and employment for those who are able to be self-sufficient and achieve a successful career. Temple provides wise advice on contemporary issues such as the changing diagnostic criteria, the recommended amount of daily screen time, and the advantages of therapy animals. Temple also provides relevant academic references and her personally recommended resources for each article and chapter. In reading this book, parents, those who have autism, professionals, and especially teachers will all achieve a greater appreciation of the qualities and challenges associated with autism.

I know that I will be taking quotes and metaphors from The Way I See It to illustrate specific points in my clinical work and presentations, and I will be advising colleagues that their expertise will be greatly enhanced by reading Temple’s explanations and recommendations. I will also advise clients to read her new book to achieve a greater degree of self-understanding by absorbing her wisdom and positive approach to autism. In reading The Way I See It, you too will see autism the way it is.

PROFESSOR TONY ATTWOOD

Foreword to the Second Edition

by Emily Gerson SainesProducer of the HBO Temple Grandin Movieand Mother of a Child with Autism

Autism entered my life prior to my son Dashiell’s second birthday. We, like so many parents, told our pediatricians of what are now known to be the classic signs of autism. Our son lost his language, began spinning, flapping his hands, having tantrums, and withdrew into his own world, a world into which we were not invited. For almost a year, we went to his pediatrician’s office to discuss these behaviors, only to be told there was nothing to worry about; he was simply experiencing his terrible twos. However, his behaviors escalated, and we witnessed him becoming a danger to himself and others. We called the pediatrician and said, “This is not just the terrible twos. Something is wrong—something is horribly wrong.” We insisted that my son be tested, and within a few short hours of arriving at the hospital, we were told that our son was diagnosed with Pervasive Developmental Disorder (PDD). For many of us, being given a diagnosis of PDD is a gentle way of saying, “Your child, your beautiful baby with ten fingers and ten toes, has autism. He may never be able to read, write, talk, or hold down a job. He may never live alone, have friends, be welcomed into a community, marry, or have a family of his own.”

The next several months were equally brutal. Our school district had an early intervention pre-kindergarten program. They assured us that the teacher was well trained and that the school was well equipped to handle him. We enrolled him, and on the first day of school, they lost him—physically lost him. Upon closer examination, it turned out this so-called “well-trained” teacher had never taught a child with autism—ever. Being two well-educated parents, we were confident that we could do a better job on our own. We set up a home-based program to be run by one of the most highly regarded behavioral therapists at the time. Unfortunately our timing was off, as our highly regarded behavioral therapist was in the midst of a nervous breakdown and as a result, her “therapy” methods more so resembled child abuse than teaching. We couldn’t have felt more lost, more alone, and more inadequate when one day, a package from my mother arrived in the mail. It was a book called Thinking in Pictures by Temple Grandin. The following day, an envelope from my grandmother arrived, and in it a New Yorker article written by Oliver Sacks about none other than Temple Grandin.

Temple’s story is remarkable. She is a gifted animal scientist, the most successful designer of humane livestock handling facilities in the United States, and she has autism. She began life nonverbal and with a variety of inappropriate behaviors. In spite of her autism, today she can read, she can write, she can talk (boy can she talk), she lives on her own, she can hold down a job (in fact she has many of them), she is a consultant for a number of Fortune 500 companies, she is a best-selling author, she is a lecturer (on livestock and autism), she is a professor of Animal Science at Colorado State University, and perhaps most importantly, she is a friend—a dear friend. She is fiercely loyal, always available, and willing to take action. Once upon a time, all of this seemed like a pipedream even for Temple, but with the support and encouragement of her mother, Eustacia Cutler, and other mentors in her life, Temple went from being a nonverbal four-year-old to being all she is today. For parents of children with autism, Temple Grandin is our hero. She has given us a window into our children’s minds and a reclaimed dream for a future filled with possibilities.

Thirteen years ago, I realized that Temple’s story needed to be shared with a wider audience. As I transitioned from being an agent at the William Morris Agency into owning my own management company, I realized it was possible for me to lead that charge and produce a film about her extraordinary life. I called Temple, reached out to HBO, and we were on our way. It took us ten years to get it right, but I couldn’t be more proud of our film, Temple Grandin, which celebrates the life of someone I respect and admire so much. Whether I was sharing a meal with her in New York, reviewing dailies with her in my hotel room in Austin, sitting beside her at the Golden Globes, being hugged by her on stage at the Emmys, or listening to her encourage the Chairman of Time Warner to examine the McDonald’s distribution system, my days with Temple have been amongst the best and most interesting of my life.

After settling back into my normal life, I picked up a copy of Temple’s book The Way I See It. Just when I thought I had learned everything Temple could teach me, I was astonished to learn there was more—a lot more. Often parents of children with autism are encouraged to adhere to a routine with their child.

Temple devotes an entire chapter to encouraging flexibility in a routine and provides examples on how to accomplish that. She identifies strategies for encouraging interests that can later become vocations, as children with autism become adults with autism. Additionally, Temple reminds us that learning is a continuum. Human beings have the ability to learn well into their senior years, and the exposure to new things is essential in expanding a person’s mind, even, and perhaps especially, if they have autism. This book is insightful, helpful, and hopeful—just like the woman who wrote it! It is a “how-to” guide that I am confident will leave any reader feeling both informed and inspired.

EMILY GERSON SAINESFebruary 2011

Foreword to the First Edition

by Dr. Ruth SullivanDirector of the First National Autism Society

Who better than Temple Grandin to give us a personal look at autism and Asperger’s?

For over thirty of her nearly sixty years’ experience on the autism spectrum, Temple has dedicated much of her time, energy, considerable intellect, and talents to learning about her condition and translating it for the rest of us. This book puts together under one cover her highly insightful, informed, articulate, and most of all, practical, ideas and instructions for dealing with the wide range of behaviors, learning styles, and physical health issues found in autism and Asperger’s Syndrome.

At the time Temple came on the autism scene, few people had heard of autism, and even fewer had ever heard of someone with autism who could communicate well enough to tell us how it felt, from the inside. I was a member of a small group of parents of children with autism, nationwide, who in November 1965, at the invitation of Dr. Bernard Rimland, met to form a national organization, the National Society for Autistic Children (NSAC), now called the Autism Society of America (ASA). Our goal was to seek a better understanding of this mysterious condition that so severely affected our children, and to seek treatment, as well as cause and cure. There was almost nothing in the literature. Dr. Rimland’s book, Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior (published in 1964) was among the very first on the subject. None of us knew an adult with autism.

I first met Temple in the mid-1980s at the St. Louis Airport, when making a connection to Chicago for the annual NSAC conference. In the small waiting area there were about 25 other conference goers from across the nation, also waiting for that flight. Most of us knew each other, and the talk was mostly about autism.

Standing on the periphery of the group was a tall young woman who was obviously interested in the discussions. She seemed shy and pleasant, but mostly she just listened. Once in Chicago, she and I got on the conference bus and sat together as we traveled to our hotel. I learned her name was Temple Grandin, and this was her first autism conference. I was impressed at how much she knew about the condition. It wasn’t until later in the week that I realized she was someone with autism. I had heard of a woman who had that diagnosis, who was high-functioning, but had not connected the two. I approached her and asked if she’d be willing to speak at the next year’s NSAC conference program. She agreed.

Back then, NSAC conferences were the only national meetings focused solely on autism. Each year there was one entire session set aside just for information exchange. It was held in a large room of ten-person round tables, each designated for a special subject, with a discussion leader. That next year I was the discussion leader for a table labeled “Adults with Autism,” and that’s where Temple first addressed an NSAC audience. The ten chairs were filled immediately, and people were standing at least three deep. The room became noisy, and with so many wanting to hear every word Temple said, I asked for a room just for us. More people followed as we were led to a small auditorium.

Temple and I stood on the slightly elevated stage. The audience couldn’t get enough of her. Here, for the first time, was someone who could tell us from her own experience what it was like to be extremely sound sensitive (“like being tied to the rail and the train’s coming”). On the topic of wearing certain kinds of underwear, she described her profound skin sensitivity, and how she could not verbally articulate how painful it was. On relationships, she talked about how hard it was to communicate what she felt, and about her difficulty in understanding others. She was asked many questions: “Why does my son do so much spinning?” “What can I do about toilet training?” “Why does he hold his hands to his ears?” “Why doesn’t he look at me?” She spoke from her own experience, and her insight was impressive. There were tears in more than one set of eyes that day.

After the hour-long session ended, many stayed around to talk to Temple. She seemed surprised but pleased with the attention—even adulation. Later, when I asked, she said she had been a little nervous. Over the years, I’ve often thought about that scene, and marveled at how remarkable an event it was for her, and all of us.

Not long afterwards, in 1986, her first book was published, Emergence: Labeled Autistic. The rest is history, as they say. Ten years later came her highly acclaimed work, Thinking in Pictures, with other autism books to follow. Temple simultaneously became well known for her work and writings in her chosen professional field of animal behavior. She earned a Ph.D. in that discipline, from the University of Colorado. Her 2006 release, Animals in Translation, became a New York Times Bestseller.

Temple quickly became a much sought-after speaker in the autism community. She wrote articles for the popular press as well as peer reviewed professional journals. Always generous to projects related to parents and their children, she wrote for parent organization newsletters, and traveled around the U.S. and the world to speak at autism conferences. Probably no one with autism has appeared in the world media more than Temple, nor had a bigger impact on our global understanding of autism and Asperger’s Syndrome and the people diagnosed on the spectrum.

Yet, the Temple Grandin of today is not the same woman I met nearly twenty-five years ago. It has been a remarkable privilege to witness Temple’s growth in social skills and awareness throughout the time I have known her. She is one of the hardest workers I have ever known. In my opinion, it is mainly that trait that has helped her become the successful, engaging adult she is now, despite severe difficulties along the way. She is knowledgeable. She is willing to help parents as well as others with autism. She is insightful. And she is courageous—a fitting word to explain her heartfelt, strong (and sometimes unwanted) advice to her adult peers with autism or Asperger’s on the importance of being polite, dressing appropriately, accepting responsibility for their actions and following rules of civility if they want to get and keep a job or have friends.

And not least, she is funny. Though generally her presentations are straightforward, in recent years she has become quite good at humor. Her audiences love it.

In addition, and to her credit, she has learned to be generous in recognizing those who have helped her along the way, namely her mother, Eustacia Cutler, whose book, A Thorn in My Pocket, tells the family story. Others are teachers and colleagues who saw her potential and bravely went beyond current practice to help her develop some of her strengths. For many individuals with autism, it is difficult-to-impossible to understand and develop “theory of mind,” that intangible mental process by which most of us intuitively notice and “read” the nuances of social situations: how others are feeling, what they may be thinking, and the meaning behind their nonverbal actions. Temple’s persistence in learning this, and her strong analytical skills while doing so, have helped significantly in improving her social thinking and social sense.

Temple continues to wrap her energies around autism and the people it touches. Her talent is a gift to all of us—not just those of us in the autism community, but the world at large. The book you are holding in your hand is the result of her keen detective-like analysis of human beings, her extensive personal thought, and the wisdom gained only through the personal experiences that make up Temple Grandin. It serves as an excellent summary of what one human being has contributed to one of the most disabling and puzzling conditions known to mankind. Temple takes time to listen—without pre-conceived ideas or judgment—to parents and the professionals who work with and for individuals with autism on the entire spectrum, from severe autism to high-level Asperger’s. She seeks solutions, from teaching strategies to the larger lifespan issues that can present challenges of immense proportions, even for neurotypicals. The suggestions she offers in this book are imaginative, well thought out, practical, and useful. She talks directly to the reader, with honesty and understanding. She knows what autism is like, and her recommendations make sense.

Every library, large or small, needs this book on its shelves. Every school, large or small, with the responsibility of educating children with autism or Asperger’s, needs the guidance this book offers. Every teacher within those schools will benefit from reading it and applying the strategies Temple so clearly illuminates. Last, and certainly not least, every parent will find within these pages golden nuggets of advice, encouragement, and hope to fuel their day-to-day journey through their child’s autism.

As I’ve heard Temple often remark in the twenty-something years I have known her, about the way she views autism and her life: “I didn’t become social overnight. There wasn’t a point when some magic switch turned on in my brain and the social stuff made sense after that. I’m the person I am today because of all the experiences I’ve had, and the opportunities those experiences offered me to learn, little by little. It wasn’t easy; sometimes it was really difficult. I’ve made a lot of mistakes, but I just kept going until I got it right. And, I’m still learning today!

That’s what I want other people on the spectrum to learn: You just can’t give up. You have to keep trying.” The wisdom she offers through this book and its personal reflections on autism will, I’m sure, ring true for many more decades to come.

RUTH CHRIST SULLIVAN, PH.D.May 2008

Ruth Christ Sullivan, Ph.D. was the first elected president of the Autism Society of America (formerly NSAC), founded in 1965 by the late Dr. Bernard Rimland. In 1979 she founded and was Executive Director of Autism Services Center (ASC), in Huntington, WV until her retirement in 2007, at age 83. ASC is a nonprofit, licensed behavioral health care agency that serves all developmental disabilities but specializes in comprehensive, autism-specific services, in community-based settings including clients’ homes. ASC serves approximately 270 clients, with a staff of 350. Dr. Sullivan was one of the chief autism lobbyists for Public Law 94-142 (now known as the Individuals with Disabilities Education Act, IDEA), as well as the Developmental Disabilities Act. She was the main force behind the founding of the West Virginia Autism Training Center at Marshall University, in Huntington, WV, in 1983.

Dr. Sullivan assisted in the production of the 1988 movie, Rain Man, serving as a consultant on autism behavior. Dustin Hoffman, who won an Oscar for his starring role as Raymond Babbett, worked directly with Dr. Sullivan and her son, Joseph (born in 1960), who has autism, in practicing for his role. The premiere of Rain Man was held in Huntington with Dustin Hoffman and Barry Levinson, the producer, present. It was a benefit event for Autism Services Center.

Though Dr. Sullivan has lived in Huntington, WV for forty years, she is still close to her large, south Louisiana Cajun family in Lake Charles.

For Readers New to Autism

Autism is a developmental disorder, typically diagnosed during early childhood. It is neurological in nature, affecting the brain in four major areas of functioning: language/communication, social skills, sensory systems, and behavior. Current research suggests there may be different subsets of the disorder arising from genetics, environmental insults, or a combination of both. Do not panic if your child is diagnosed with autism. When I was 2½ years old, I had no speech, constant tantrums, and repetitive behavior. Intensive early speech therapy and turn-taking games were effective. Today I am a university professor of animal science at Colorado State University. When kids are under five years of age, it is difficult to predict how they will develop. Some socially awkward children receive an autism diagnosis in either high school or elementary school because they have no friends. These children can benefit greatly from programs that teach social skills. Some of these kids are brilliant and can have a good career in computer science, art, engineering, or a highly skilled trade. During my career designing livestock equipment for many major corporations, I worked with many skilled people who were probably undiagnosed individuals with autism, ADHD, or dyslexia.

Every person with autism is unique, with a different profile of strengths and challenges. No two individuals manifest the same characteristics in the same degree of severity. It is a “spectrum” disorder, and the various individual diagnoses are collectively referred to as autism spectrum disorder (ASD). Individuals on the spectrum range from those who remain nonverbal with severe challenges that can include self-injurious behaviors and intellectual disability to individuals on the fully verbal end of the spectrum (known as Asperger’s syndrome under old guidelines), who are extremely intelligent with good expressive verbal language yet markedly impaired social skills and weak perspective-taking abilities. The autism spectrum is very broad, ranging from socially awkward brilliant workers in Silicon Valley to individuals who will always have to live in a supervised living situation. Some kids on the high end of the autism spectrum are gifted in art, music, or mathematics. In 2013, changes were made in diagnostic criteria in the DSM (Diagnostic and Statistical Manual of Mental Disorders), the diagnostic “bible” of the U.S. medical community, which eliminated Asperger’s syndrome. The various autism labels are now merged into one designation, “autism spectrum disorders.” An autism diagnosis is not precise. Over the years, committees of doctors have kept changing the diagnostic criteria. A draft of the new ICD-11 international autism diagnostic guidelines has been published. It may provide a clearer guidance to both parents and professionals.

The rate of autism is now 1 in every 59 births (Centers for Disease Control, 2019) and continues to escalate at alarming rates. Every 21 minutes, a child is diagnosed on the spectrum. It is four times more common in boys than girls and is consistently prevalent around the globe within different racial, social, and ethnic communities. According to the Autism Society of America, the lifetime cost of caring for a single child with severe autism ranges from $3.5 to $5 million.

Autism is a different way of thinking and learning. People with autism are people first. Autism is only one part of who they are. ASD is no longer viewed as strictly a behavioral disorder, but one that affects the whole person on various fronts: biomedical, cognitive, social, and sensory. With individualized and appropriate intervention, children with ASD can become more functional and learn to adapt to the world around them.

Great strides are being made in our understanding of autism spectrum disorders and how best to help these individuals. Children are now being diagnosed as early as 12 to 15 months old and many who receive intensive early intervention are able to enter elementary school in class with their typical peers, needing minor supports and services. No matter the age of diagnosis, children and adults with ASD are constant learners and significant improvements in their functioning can be made at any age with the appropriate types and intensity of services.

Too many parents coddle and overprotect their children. I am seeing teenagers who are fully verbal and doing well academically not learning life skills such as shopping, bank account or keeping and holding a job. My mother made sure I learned all these things when I was a teenager and a young adult. She always gave me choices of new things to try, but I was not allowed to be a recluse in my room all day. However, I had some scheduled time to be alone to calm down. Today I talk to many grandparents who discover that they are on the autism spectrum when their grandchildren are diagnosed. These grandparents learned life skills when they were young and many of them had excellent careers.

© Autism Asperger’s Digest, 2008, Reprinted with permission. Revised 2019.

Introduction

This fifth edition of this book is a compilation of articles I have written for the Autism Asperger’s Digest magazine from the year 2000 to the present. The articles have been grouped into different categories, addressing subjects from early educational interventions, to sensory sensitivity problems, to brain research and careers. At the beginning of each section I have added a new, updated introduction, which includes additional thoughts on the subject matter. Articles that required updating were updated.

The articles combine both my personal experiences with autism and practical information that parents, teachers, and individuals on the autism spectrum can put to immediate use. The autism spectrum is very broad, ranging from individuals who remain nonverbal to a mild Asperger’s individual who is a brilliant scientist or computer engineer. This book contains information that can be applied across the entire autism spectrum.

The Importance of Early Educational Intervention

Both research and practical experience show that an intensive early education program in which a young child receives a minimum of twenty hours a week of instruction from a skilled teacher greatly improves prognosis. The brain of the young child is still growing and evolving. At this age, the neural pathways are highly malleable, and intensive instruction can reprogram “faulty wiring” that prevents the child from learning. Plus, behaviors in a young child have not yet become ingrained. It will take less practice to change an inappropriate behavior at age two to three than it will to change the same behavior at age seven to eight. By then, the child has had many years of doing things his way and change comes about more slowly.

For early childhood programs, ABA (applied behavioral analysis) programs using discrete trial training have the best scientific documentation backing up their use. But other programs, such as the Denver early start program, have been validated in a randomized trial. Additional evidence-based programs are pivotal response, speech therapy, and occupational therapy. The autism spectrum is vast and diversified. Children have different ways of thinking and processing information, and it is important that an intervention method be aligned with the child’s learning profile and personality. Detailed descriptions of different types of early intervention programs can be found online.

A book I recommend is Early Intervention and Autism: Real Life Questions, Real Life Answers by Dr. James Ball (2012) from Future Horizons, Inc. While this book is written for parents of newly diagnosed children, more than three-quarters of the information on interventions, effective teaching strategies, program planning, and behavior management is valuable for parents of children of all ages.

My Early Intervention Program

I had a wonderful effective early education program that started at age two and a half. By then, I had all the classic symptoms of autism including no speech, no eye contact, tantrums, and constant repetitive behavior. In 1949 when I was two-and-a-half years old, the doctors knew nothing about autism, but my mother would not accept that nothing could be done to help me. She was determined, and knew that letting me continue without treatment would be the worst thing she could do. She obtained advice from a wise neurologist who referred her to a speech therapist to work with me. She was just as good as the autism specialists today.

My talented speech therapist worked with me for three hours a week doing ABA-type training (breaking skills down into small components, teaching each component separately using repetitive drills that gave me lots of practice) and she carefully enunciated hard consonant sounds so I could hear them. At the speech therapy school, I also attended a highly structured nursery school class with five or six other children who were not autistic. Several of the children had Down syndrome. These classes lasted about eight hours a week.

My nanny was another critical part of my early therapy. She spent 20 hours a week keeping me engaged. For instance, playing repeated turn-taking games with my sister and me. She was instrumental in introducing early social skills lessons, even though at that time, they weren’t referred to as such in a formal manner. Within the realm of play, she kept me engaged and set up activities so that most involved turn-taking and lessons about being with others. In the winter, we went outdoors to play in the snow. She brought one sled and my sister and I had to take turns sledding down the hill. In the summer, we took turns on the swing. We were also taught to sit at the table and have good table manners. Teaching and learning opportunities were woven into everyday life.

When I turned five, we played lots of board games such as Parcheesi and Chinese checkers. My interest in art and making things was actively encouraged and I did many art projects. For most of the day, I was forced to keep my brain tuned into the world. However, my mother realized that my behaviors served a purpose and that changing those behaviors didn’t happen overnight. I was given one hour after lunch where I could revert back to repetitive autistic behaviors without consequence. During this hour, I had to stay in my room. I sometimes spent the entire time spinning a decorative brass plate that covered a bolt that held my bed frame together. I would spin it at different speeds and was fascinated at how different speeds affected the number of times the brass plate spun.

The best thing a parent of a newly diagnosed child can do is to watch their child without preconceived notions and judgements and learn how the child functions, acts, and reacts to his or her world. That information will be invaluable in finding an intervention method that will be a good match to the child’s learning style and needs. The worst thing parents can do with a child between the ages of two to five is nothing. It doesn’t matter if the child is formally diagnosed with autism spectrum disorder (ASD) or has been labeled something less defined, such as global developmental delay. It doesn’t matter if the child is not yet diagnosed if there are signs that the child may be on the spectrum: speech is severely delayed, the child’s behaviors are odd and repetitive, the child doesn’t engage with people or his/her environment, etc. The child must not be allowed to sit around stimming all day or, conversely, tuning out the world around him/ her. Parents, hear this: doing nothing is the worst thing you can do. If you have a three-year-old with no speech who is showing signs of autistic behavior, you need to start working with your child now. If signs are appearing in a child younger than three, even better. Do not wait six more months or a year even if your pediatrician is suggesting you take the “wait and see” approach or is plying you with advice such as “boys develop later than girls” or “not all children start to speak at the same time.” My advice to act now is doubly emphasized if your child’s language started developing late or his/ her language and/or behavior is regressing.

Parents can find themselves on long waiting lists for both diagnosis and early intervention services. In some cases, the child will age out of the state’s early intervention system (birth to three) before his name gets to the top of the list! There is much parents can do to begin working with the child before formal professional intervention begins. Play turn-taking games and encourage eye contact. Grandmothers who have lots of experience with children can be very effective. If you are unable to obtain professional services for your young child, you need to start working with your child immediately.

This book and Raun Kaufman’s book, Autism Breakthrough, will be useful guides on how to work with young kids. The best part of Kaufman’s book are the teaching guidelines that grandmothers and other untrained people can easily use. Ignore his opinions about other treatments. Do not allow young children under five to zone out with tablets, phones, or other electronic devices. In young children, solitary screen time must be limited to one hour a day. For children under five, all other activities with electronic devices should be interactive activities done with a parent or teacher. The intense interest in the electronic device can be used to motivate interest in doing a game where turns are taken with another person. During this game, the phone should be physically passed back and forth during turn taking. Too many kids are tuning out the world with electronics. In older children, video game playing should be limited to one hour a day. Excessive video gaming and screen use is a major problem in individuals with autism.

Engagement with the child at this point in time is just as effective as is instruction. While you may not yet be knowledgeable about various autism intervention models, you are smart enough and motivated enough to engage your child for 20 plus hours a week. Don’t wait! Act now!

References and Additional Reading

Adele, D. (2017) The impact of delay of early intensive behavioral intervention on educational outcomes for a cohort of medicaid-enrolled children with autism, Dissertation, University of Minnesota.

Ball, J. (2012) Early Intervention and Autism: Real Life Questions, Real Life Answers, Future Horizons, Inc., Arlington, TX.

Children’s Hospital of Philadelphia (2017) Evidence-based treatment options for Autism, www.chop.edu/news/evidence-based-treatment-options-autism (Accessed June 22, 2019).

Dawson, G. et al. (2010) Randomized controlled trial of an intervention for toddlers with autism: The Early Start Mode, Pediatrics 125:e17-e23.

Grandin, T. (1996) Emergence: Labeled Autistic, Warner, Books, New York NY.

Gengoux, G.W. et al. (2019) A pivotal response treatment package for children with autism spectrum disorder, Pediatrics, Sept:144(3) doi:10.1542/ peds.2019-0178

Kaufman, R.K. (2015) Autism Breakthrough, St. Martin’s Griffin.

Koegel, L. and Lazebnik, C. (2014) Overcoming Autism: Finding Strategies and Hope That Can Transport a Child’s Life, Penguin Group, New York, NY.

Le, J. and Ventola, P. (2017) Pivotal response treatment for autism spectrum disorder: Current Perspectives in Neuropsychiatric Disorders Treatment, 13:1613-1626.

Do Not Get Trapped by Labels

An autism diagnosis is not precise, like a diagnosis for a disease. I can get a lab test for cancer or tuberculosis that is very definitive; this is not true for autism. In the U.S., a diagnosis for autism is a behavioral profile based on a manual published by the American Psychiatric Association called the DSM (Diagnostic and Statistical Manual of Mental Disorders). The behavioral profiles in this manual are based on a combination of scientific studies and the opinion of a panel of expert doctors who debated in a conference room. A draft of the new ICD-11 (International Classification of Diseases) guidelines was published in 2019. It will be outlined in this chapter. Since the ICD is used in many countries around the world for all types of diseases, it is designed to be easily used by primary care doctors.

When Richard Panek and I worked on our book titled The Autistic Brain (2013), we reviewed the entire history of the DSM. Since the 1950s and 1960s, the diagnostic criteria for autism has changed dramatically. When all the changes made during the last 60 years are looked at side-by-side, it is rather shocking.

In 1980, a child had to have both speech delay and autistic behaviors to be diagnosed with autism. In 1994, Asperger’s syndrome was added, in which the child is socially awkward with no speech delay. In the 2013 DSM-5 (American Psychiatric Association), Asperger’s syndrome (AS) and PDD-NOS (pervasive developmental disorder—not otherwise specified) were removed. These labels are now all merged into a broad autism spectrum disorder (ASD). There is no longer any requirement for speech delay. Taking out speech delay makes the DSM-5 more vague than the old DSM-IV. Some scientists do not consider language delay as a core symptom of autism because language delays and speech abnormalities are so variable.

For a person to be labeled with ASD, the DSM-5 requires that symptoms must be present in early childhood, but the age of onset is no longer defined. The DSM-5 whittles symptoms down to social and behavioral. The main emphasis is on social abnormalities inherent in the disorder: deficits in social interaction, reciprocal communication, and developing and keeping relationships with friends. In addition, the child must have two out of four of the following: repetitive behavior, adherence to routines, fixated interests, or sensory problems. Studies have shown that 91 percent of individuals with an Asperger’s or PDD-NOS diagnosis will still quality for an ASD diagnosis in the DSM-5. The DSM-5 also created a new social communication diagnosis, which consists of the social problems of ASD without the repetitive behavior, fixated interests, or sensory problems. To state that this is not autism does not make sense, because social deficits are a core autism symptom. Since there is no funding for social communication disorder, very few children have received this diagnosis.

Autism is a Huge Spectrum

One of the big problems with autism (ASD) diagnosis is that it has now changed to a broad spectrum with a wide-ranging degree of abilities. When children are really little (age two to five), most experts agree that many early educational treatments greatly improve prognosis. When I was three, I had no speech and all the typical autistic symptoms. ABA-type (applied behavior analysis) speech therapy and turn-taking games made it possible for me to be enrolled in a regular kindergarten at age five. Rebecca Grzadzinski, Marisela Huerta, and Catherine Lord (2013) stated, “In terms of cognitive functioning, individuals with ASD display a wide range of abilities from severe intellectual disability (ID) to superior intelligence.”

Individuals with ASD range from computer scientists at Silicon Valley to individuals who will never live independently. They may not be able to participate in activities such as shopping trips or a sports event. When such a broad range of abilities is lumped together, it is difficult for special education teachers to shift gears between the different levels of abilities. Too often a child with superior abilities is placed in a classroom with more severely impaired students. This may hold this student back and not enable him/her to achieve.

Some people have switched to using the international ICD-10 diagnostic system, which still has the Asperger’s label. An abbreviated definition of autism in the new ICD-11 is:

Persistent deficits in initiating and sustaining social interactions.

Restricted, repetitive, and inflexible patterns of behavior and interests.

When this book went to press, a final draft of the ICD-11 had been published. The Asperger’s label has been removed and autism is described with six levels of severity. I like the new ICD-11 draft because it provides clearer guidance. There is a heavy emphasis on whether or not the person has a disorder of intellectual development. When therapies are effective, a child or adult can progress to a higher level. Below is my simplified summary. You can access the complete ICD-11 online.

Autism – Both without intellectual disability and normal language (formerly Asperger’s diagnosis)

Autism – Intellectual disability with normal or near-normal language.

Autism – Without intellectual disability and with impaired functional language.

Autism – Both impaired intellectual development and language.

Autism – Without intellectual disability and no language.

Autism – Intellectual disability and no language.

You Should Bust Out of the Label Silos; ADHD and Autism Overlap

Each diagnostic label has its own support group meetings and books. Unfortunately, each group may stay in its own silo and there may be little communication between them. I have observed that the books for each diagnosis are almost all particular to that diagnosis. In many cases, there are kids who fit in more than one diagnosis. There are four diagnostic labels that get mixed up all the time. They are ASD, sensory processing disorder (SPD), ADHD (attention-deficit/hyperactivity disorder), and gifted. Both the DSM-5 and ICD-11 allow a dual diagnosis of ASD and ADHD.

In fact, three studies show that there is a genetic overlap with autism and ADHD. The biggest crossover in genetic factors is between fully verbal autism (Asperger’s) and ADHD. This is why autism and ADHD are often mixed up. One doctor will give a child an autism diagnosis and another will diagnose that same child as ADHD. A new neuro-imaging study shows that both autism and ADHD have similar structural abnormalities in the social parts of the brain. Some of these kids may be gifted in one academic subject and have a severe disability in another. Sometimes a child is labeled twice exceptional (or 2E) and he/she may be both gifted and have either an ASD, ADHD, or SPD diagnosis. When the same type of students get put in different silos, they often go down different paths. My observations at conferences indicate that about half the children who are brought to an autism conference are gifted in at least one area such as math, music, reading, or art. In other chapters, I will discuss the need for developing their strengths. When I attend a gifted education conference, I see the same little geeky kids going down a different, very positive path toward a career in science or art. I want to make it very clear: geek, nerd, and mild ASD are the same thing. There is a point where being socially awkward is just part of normal human variation. There is fascinating new research that shows that autism may be the price for a human brain. The same genes that make the human brain large also cause autism. Other studies have shown that autistic traits are present in the general population.

I have also given talks at many high-tech companies, and it is likely that almost half the people who work there have mild ASD. One executive at a tech company told me that he knows they have many employees with AS or mild ASD, but they don’t talk about it. Many people in successful technical careers hate the ASD label because they feel that it implies that they are damaged. They avoid the labels. Recently I read about a young man who had a severe speech delay, and he was apprenticed into his father’s physics lab. He had several scientific papers published before he was 20. If he had been born into a different situation, he may have taken a different path as an individual labeled with ASD.

Labels Required for School or Medical Services

Schools and insurance companies require diagnostic labels in order to get services. Unfortunately, I am seeing too many smart kids labeled ASD getting fixated on their autism. I think it would be healthier for the child to be fixated on art, writing, science, or some other special interest. Too many kids are becoming their label. When I was a student, I went to school with lots of socially awkward, geeky individuals. If DSM-5 guidelines were used, they would have been labeled autism spectrum disorder. If the new ICD-11 had been used, they would have been placed in the mildest autism category, similar to the old Asperger’s diagnosis.

Both fully verbal autism and more severe ASD often look the same in nonverbal or speech-delayed children under age five. When children labeled ASD get older, they may diverge into two basic groups who need very different services. This highly divergent group is all assigned the same DSM-5 ASD label, and in poorly run programs, they are all given the same services. One group will continue to have a severe disability with either no speech or partial speech, and the other group will become fully verbal and capable of independent living and a successful career if they receive the right interventions. They usually are able to do grade-level or above-average schoolwork in at least one subject, such as reading or math.

There is a third subgroup in the nonverbal group who appear to have a severe intellectual disability. Examples of this type are Tito Mukhopadhyay and Naoki Higashida. Both of them can type independently, and they have good brains that are “locked in.” From both an educational and functional standpoint, ASD becomes many different things in older children and adults. They may explain why there is so much controversy and differences of opinion in the autism community.

I am also concerned about children who should have an ASD label but they were given a label of oppositional defiant disorder (ODD) or disruptive mood dysregulation disorder (DMDD). In DMDD, the symptoms are frequent temper tantrums in a child older than six. The ODD label can be used for children of all ages. Its main symptoms are active defiance, vindictiveness, and sustained anger. Children who get these labels need to have firm limits placed on behavior and be given choices. For example, the choice could be doing homework before dinner or doing it after dinner. Choices help prevent the oppositional child from just saying “no.”

In conclusion, parents and teachers must bust out of the ASD silo. DSM labels are not precise. They are behavioral profiles. Unfortunately, our system requires labels to get services. Remember to think about the specific services a child needs such as tutoring in reading, prevention of bullying, or social skills training for an older child or an intensive, early educational program for a nonverbal three-year-old.

References and Additional Reading

American Psychiatric Association (2013) Diagnostic and Statistical Manual of Mental Disorders (DSM-5) Washington, D.C.: American Psychiatric Association.

Autism Europe (2018) World Health Organization updates classification of autism in the ICD-11 www.autism.europe.org (accessed June 21, 2019).

Baribeau, D.A. et al. (2019) Structural neuroimaging correlates of social deficits are similar in autism and attention-deficit/hyperactivity disorder: Analysis from the POND Network, Translational Psychiatry, 4(9):72doi:10.1038/s41398-019-0392-0.

Barnett, K. (2013) The Spark: A Mother’s Story of Nurturing, Genius and Autism, Random House, New York NY.

Constantino, J.N. et al. (2003) Autistic traits in the general population: A twin study, Archives of General Psychology, 60:530-534.

Grandin, T., and Panek, R. (2013) The Autistic Brain: Thinking Across the Spectrum, Houghton Mifflin Harcourt, New York, NY.

Grzadzinski, R., Huerta, M. and Lord, C. (2013) DSM-5 and Autism Spectrum Disorders (ASDs): An Opportunity for Identifying Subgroups, Molecular Autism, 4:12-13. Doi:10.1186/2040-2392-4-12.

Hazen, E., McDougle, C., and Volkmar, F. (2013) Changes in the diagnostic criteria for autism in DSM-5 controversies and concerns, The Journal of Clinical Psychiatry, 74:739 doi:10.4088/JCP.13ac08550.

Higashida, N. and Mitchell, D. (2017) Fall Down Seven Times and Get Up Eight: A Young Man’s Voice from the Silence of Autism, Random House, New York NY.

May, T. et al. (2018) Trends in the overlap of autism spectrum disorders and attention deficit hyperactivity disorder, prevalence, clinical management, language and genetics, Current Disorder Reports, 5:49-57.

Mukhopadhyay, T. (2008) How Can I Talk if My Lips Don’t Move: Inside My Autistic Mind, Arcade Publishing, New York NY. Amazon Kindle and Barnes & Noble Nook available. Also available as audiobook from Amazon.

Pinto, R. (2015) The genetic overlap of attention-deficit/hyperactivity disorder and autistic-like traits: An investigation of individual symptom scales and cognitive markers, Journal of Abnormal Child Psychology doi:10.1007/s10802-015-0037-4.

Reed, G. M. et al. (2019) Innovations and changes in the ICD-11 classification of mental behavioral and neurodevelopmental disorder, World Psychiatry, 18 doi:10.1002/wps.20611.

Research in Autism (2019) Autism Spectrum Disorder, Diagnostic Criteria ICD-11, www.researchautism.net (Accessed January 25, 2019).

Sikela, J.M. and Sarles-Quick, V.B. (2018) Genomic tradeoffs: Are autism and schizophrenia the steep price for a human brain? Human Genetics, 137:1-13.

Traper, A. (2018) Discoveries in the genetics of ADHD in the 21st century: New findings and implications, American Journal of Psychiatry, 175:943-950.

World Health Organization (2019) ICD-11, Draft, Autism Spectrum Disorder, International Classifications of Diseases, World Health Organization, Geneva, Switzerland.

Economical Quality Programs for Young Children with ASD

I was lucky to get state-of-the-art early intervention (EI) and education while growing up in the early 1950s. Despite the lack of knowledge about autism and how to treat it (aside from institutionalization, which was the norm at that time), my mother had me in an excellent speech therapy nursery school by age three and I had a nanny who spent hours and hours per week playing turn-taking games and structured, enjoyable activities with me. In addition, our household’s behavior rules were welldefined and social manners and social expectations were strictly enforced. Fortunately, my parents had enough money to pay for the programs that contributed to my development and laid the foundations for successful functioning as I grew up and ventured out on my own. Adjusting the fees for inflation, the cost of my program would probably be in the midrange, compared to early intervention programs being used today. Many programs now available are much more expensive.

Can parents on a limited budget put together a good program for their young autistic child? The answer is yes, with a little thought and planning. I have talked to parents who have put together their own successful EI program after reading a few books and enlisting the help of volunteers. Self-motivation and an unfailing desire to help their child are needed as much as education about autism. The absolute worst thing a parent can do is to let their child sit and watch TV all day or zone out unaware of his or her surroundings. This is precious time wasted, never to be regained.

Both research and practical experience have indicated that twenty or more hours of intense one-to-one interaction with an effective teacher and/ or adult can kick-start speech and improve language and other behaviors in children with ASD. In many parts of the country a public school will provide only one or two hours a week of therapy with a speech therapist, an occupational therapist (OT), or a behavioral specialist. This is not enough to be really effective, but it does present an opportunity for training of the individuals who work with the child outside of the school day. This is especially true for parents, who need to take the lead and provide supplemental instruction themselves.

I recommend that parents in those situations approach the school therapists as “coaches” who can educate them about their child’s autism and teach them how to do more intensive therapy at home. It also helps if family members or volunteers who are working with the child (for instance, a grandmother who has volunteered to work with a four year old) visit the school every week and watch the professional therapist work with the child. The professionals can give volunteers therapy assignments to work on with the child during the week. Invaluable information can be gleaned by watching sessions “in action” that no amount of reading will ever convey. Conversely, it might also be helpful from time to time to pay the therapist to spend an hour or two observing how the in-home program is unfolding. Sometimes a small change to a program can make a world of difference and it often takes a trained eye to spot situations like this. The weekly get-togethers are also a perfect time to discuss the child’s progress and review goals and objectives for the coming week so everyone can keep track of progress and program changes.

Church and civic groups are a great place to find people who might be willing to work with a child. Other sources of help include students from the local high school or college students. When looking for volunteers to help teach the child, try to be specific about the types of things they will be doing. For instance, grandmothers might feel comfortable volunteering to “play” with a child, or help provide “simple structured, repetitive drills”— those are familiar skills most people possess. Yet the same grandmother might feel ill-equipped if you ask her to “help out with the therapeutic behavior program designed for a child with autism.” Most people don’t know what that type of program entails, and they may think that only someone with a college degree would have relevant skills. Be sure to mention that you (or someone else) will be providing them with basic education and training on autism to further reinforce their ability to handle what comes up. Many people are genuinely interested in helping others, provided they get some training on how to do it.

I have observed that some teachers and therapists have a knack for working with children with ASD and others do not. Passive approaches do not work. Parents need to find the people, both professionals and non-professionals, who know how to be gently insistent, who keep the child motivated to learn, are child-centered in their approach, and are dedicated to teaching children with autism in a way they can learn, instead of insisting the child learn in the way they teach. Doing so naturally engages the child, which is the foundation of any effective program for children with autism, no matter what the cost. A useful practical book for learning teaching methods is Autism Breakthrough by Raun K. Kaufman.

Strategies that build on the child’s area of strength and appeal to their thinking patterns will be most effective.

Different Types of Thinking in Autism

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