Autism Spectrum Disorder: What Every Parent Needs to Know

ISBN-13: 9781610022699

Media Type: Paperback(Second edition)

Publisher: American Academy of Pediatrics

Publication Date: 04-23-2019

Pages: 342

Product Dimensions: 5.90(w) x 8.90(h) x 0.80(d)

The American Academy of Pediatrics is an organization of 67,000 pediatricians. Paul S. Carbone, MD, FAAP, is a general pediatrician, associate professor of pediatrics at the University of Utah, a member of the Council on Children with Disabilities Autism Subcommittee, and the parent of a son with autism. Alan I. Rosenblatt, MD, FAAP, is a neurodevelopmental pediatrician and an associate clinical professor of pediatrics at Northwestern University.

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CHAPTER 1

What Is Autism Spectrum Disorder?

As a pediatrician whose son has autism spectrum disorder (ASD), I know all too well about the difficult emotions that often surround a diagnosis of ASD. My son was diagnosed as having ASD in 2004 at the age of 24 months. Before the diagnosis, we were concerned about his development, beginning in infancy. At times he seemed uncomfortable with symptoms of acid reflux, and at other times he was extremely quiet and hard to engage. While he has always made forward progress, he reached his developmental milestones later than other children. For example, as a young toddler, he had difficulty using gestures, such as pointing, to tell us what he wanted, and he didn't begin to talk until he was 24 months old.

While getting the diagnosis was painful, it ultimately helped me better understand him. It also began the process of knowing how to help him reach his potential.

Although his mother and I are pediatricians, it was difficult to adjust our expectations, just like any parents. At first, I thought about the things I did with my father that my son and I might not be able to do, such as playing sports. I later realized that although some things are challenging for him, there are many things we do together that bring us both much joy. I have learned during this journey that parenting a child on the autism spectrum is not "better" or "worse" than parenting any other child. It is simply different. My son has helped me appreciate and enjoy those differences.

We have always focused on what our son can do and not on what he can't. Along the way, we have tried to obtain the best therapies possible that allow him to reach even higher. As scientists, we had known that the best evidence-based therapy available for children with ASD is behavioral therapy, so we began his behavioral therapy program while he was very young. In addition to trying intensive behavioral therapy, we were open to trying complementary and alternative therapies as long as they were safe. After doing some research, we tried a few different nutritional supplements and the glutenfree/casein-free diet, understanding that there was limited evidence that these treatments would help reduce the symptoms of autism. After some time, we concluded that his progress with behavioral therapy was no better with these interventions than without them, so we discontinued them. We have continued to support him with ongoing behavioral therapy and have been delighted with his progress.

Now our son is an active participant in his community. With the support of family, friends, educators, therapists, and doctors, he enjoys many of the same activities as his peers: swimming, basketball, bowling, summer camp, reading, and discovering. All who take the time to get to know him are drawn in by his gentle demeanor, curious nature, and wonderful sense of humor.

— Paul Carbone, MD, FAAP

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Ellen had always taken pride in her son's intelligence, his expansive vocabulary, and his knowledge of dinosaurs. But at the age of 11, Brian was struggling socially. Classmates found his all-consuming obsession with dinosaurs annoying, and Brian grew impatient with them if they didn't know as much as he did about the prehistoric creatures. He had trouble understanding sarcasm from his peers. He couldn't tell when they were being mean but got overly sensitive when they weren't. He sometimes made rude, sarcastic comments during class while the teacher was talking.

Brian also behaved in unusual ways. He was always touching people when he was stuck waiting in lines, falling down at unexpected times, and making loud, inappropriate comments about people within earshot. What concerned Ellen the most was that Brian never seemed to look her in the eye while she was talking to him.

Over time, Ellen grew suspicious that something else was going on with her son, especially when she went back to college to get a degree in psychology and started doing more reading. Though he had already been diagnosed as having attention-deficit/hyperactivity disorder at age 7, she began to wonder if he also had ASD, a diagnosis that a teacher had once suggested but that Ellen had always dismissed. "He didn't fit the profile of what I thought was autism," she says. "I always thought children with autism were unattached, unresponsive, and in their own world."

Ellen had Brian evaluated by a psychologist. A screening test suggested that he had ASD. The more she learned about ASD, the more Ellen was convinced that Brian had it. Ellen considered whether to pursue a formal ASD diagnosis. On the one hand, she knew that with a diagnosis, Brian would be eligible for more therapy services. On the other hand, she was concerned the label would create stigma for her son. "And I'm afraid some people will look at me and think I'm a bad parent," she says.

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Chances are, you're familiar with some of the concerns that Ellen is facing or the difficult emotions that Dr Carbone has experienced while adjusting to his son's diagnosis. Like Ellen, you may be wondering whether you should have your child evaluated or what a diagnosis will mean for your child's life. Like Dr Carbone, you may be looking for information about where to find help for your child's social and communication challenges. Or maybe you suspect your child has ASD but haven't addressed your concern with your pediatrician yet.

We hope that reading this book will help provide you with the information you are seeking to make the best decisions for your child. In this book, you will learn how ASD is defined and diagnosed and the types of behavioral and developmental therapies available for treating it. You will learn when medications may be required and whether complementary and integrative medicine may be helpful. We also help you create a treatment team that includes your pediatrician, and we provide information to help you care for your child and get a handle on the types of services and assistance available to him. In addition, we help you understand the effect of ASD on you and the rest of your family. Stories from other parents help you understand that you are not alone on this journey. You will acquire an understanding of how ASD will affect your child as he grows older and the types of advocacy you can do as the most important member of the treatment team: the parent of a child with ASD.

* * *

Autism spectrum disorder IS a biologically based neurodevelopmental disorder that affects a child's behavior and social and communication skills. For most children, this condition is chronic and requires lifelong management. The condition of some children — approximately 9%, according to studies — improves over time to a point at which it no longer meets diagnostic criteria for ASD. In general, these children are the ones who have typical learning abilities and have received early, intensive behavioral therapy (see Chapter 4). However, most children whose condition no longer meets criteria for ASD still have other developmental and behavioral symptoms.

No doubt, we certainly hear a great deal about ASD these days. A 2018 study by the Centers for Disease Control and Prevention estimated that 1 in 59 children is diagnosed as having ASD, about 1.7% of all children. Boys are 4 times more likely to be identified than girls, and white children are more often diagnosed than black and Hispanic children.

A major reason for the dramatic increase in the diagnosis of ASD has to do with changes in the way the condition is diagnosed. In 1994, the diagnosis was changed to include children with milder symptoms, including those whose language is closer to normal cognitive milestones. In addition, a growing body of research showing the importance of early, intensive behavioral treatment in helping children with ASD prompted the federal government to emphasize early detection, so more children could receive services at a younger age. The emphasis on importance of early diagnosis and intervention inspired several major public education campaigns to teach parents about ASD and the importance of early diagnosis. Because more children are now considered to have ASD, and diagnosis is occurring earlier in life, the prevalence of ASD has increased.

In spite of all the public interest in and attention on autism, figuring out whether your child has ASD is not easy. This condition is remarkably complex and difficult to diagnose. No 2 children exhibit the same symptoms, and severity varies widely. Some cases may be subtle, while others may be more straightforward. In most cases, the process of determining whether a child has ASD usually begins with parents who are concerned about their child's development. But in some cases, the early sign of ASD first comes to the attention of a pediatrician, teacher, or child care provider who observes something different in the way the child plays, learns, speaks, or acts.

We'll discuss more about diagnosis in Chapter 3. First, we'll go back in time to see how autism emerged as a major health concern.

A Brief History of Autism

Autism was first described in 1943 by Leo Kanner, MD, a child psychiatrist at Johns Hopkins University School of Medicine. It was Dr Kanner who first coined the term autism, borrowed from the Swiss psychiatrist Eugen Bleuler, who used the word to describe the idiosyncratic, self-centered thinking he saw in people who had schizophrenia. Dr Kanner used autism to describe 11 children in his practice who seemed to prefer isolation to social engagement. The children all displayed extreme aloofness and total indifference to other people. They made little eye contact and did not engage in imaginary play. Some displayed an amazing ability for rote memory.

Others were obsessed with routines, spinning toys, and mechanical objects. Dr Kanner believed that autism was an inborn disorder and that children with this condition entered the world without biological underpinnings for social interaction. These were children who lived in their own world. Even today, Dr Kanner's descriptions of autism are highly regarded and considered some of the best ever written.

In the 1950s, Freudian psychoanalysts put a new spin on autism, contending that the condition resulted from the emotional withdrawal of a baby born to a cold and emotionally distant parent. In particular, they focused on mothers and called these parents "refrigerator mothers." Bruno Bettelheim, PhD, then the director of the Orthogenic School in Chicago, became fascinated with children who had autism and advanced this theory. (Dr Bettelheim had a doctor of philosophy but was widely cited as a child psychologist. He lectured on psychology at the University of Chicago, despite the lack of any formal training.) Dr Bettelheim's most famous patient was a boy named Joey, whom he described in 1959 as a "mechanical boy" in the popular magazine Scientific American. At 18 months of age, Joey was unable to speak and was described by his grandparents as "remote and inaccessible." Joey became fascinated with mechanical objects and learned to take apart and reassemble an electric fan. By the age of 4, Joey was spending a great deal of his time rocking back and forth and becoming completely consumed with mechanical objects.

Like many of his colleagues at the time, Dr Bettelheim attributed Joey's unusual behaviors to his parents. Dr Bettelheim claimed that their "aloof" parenting style forced Joey to withdraw into his own world and marked the beginning of his descent into schizophrenia. In fact, autism was classified as a form of childhood schizophrenia in the first 2 editions of the Diagnostic and Statistical Manual of Mental Disorders (DSM), a manual published by the American Psychiatric Association to provide diagnostic criteria for behavioral conditions.

Dr Bettelheim's views persisted for years until experts began to consider autism from more biological perspectives. In 1964, a research psychologist named Bernard Rimland described infantile autism as a neurological disorder with a strong genetic component. Rimland and his wife were personally acquainted with autism — they were the parents of a child with autism, which they had diagnosed themselves.

Studies in the early 1970s showed that despite causing similar symptoms, autism was a disorder distinct from childhood schizophrenia. In 1977, the first study of twins and autism was published in the Journal of Child Psychology and Psychiatry. The study showed a strong genetic influence in identical twins who had autism. If one twin had autism, the other twin was much more likely to have other cognitive differences too. Finding a genetic connection to autism meant that autism needed to be described more precisely so it could be properly studied and better understood. That became possible in 1980, when 'infantile autism' finally received its own separate category in the third edition of DSM.

Defining Autism Spectrum Disorder Today

Even since the most recent edition of this book, the definition of ASD continues to evolve. The newest version of the diagnostic manual of behavioral disorders, the DSM-5, was published in 2013. We have therefore eliminated a more extensive discussion of the definition used in DSMIV in order to focus on current standards. In short, the disorder remains essentially unchanged, but how it is classified and described is different.

The New Definition of Autism

In the new DSM, the DSM-5, a single diagnostic category of ASD replaces the category of "pervasive developmental disorders" from DSM-IV, including autistic disorder, Asperger syndrome, pervasive developmental disorder–not otherwise specified, and childhood disintegrative disorder. The DSM-5 provides a simplified way of defining autism.

To be diagnosed as having ASD per the DSM-5, a child must have problems in 2 main areas: social forms of communication, and restrictive or repetitive behaviors and interests. More specifically, these are

• Persistent struggles with social communication and social interactions in various situations that cannot be explained by other developmental delays. These may include problems with give-and-take in normal conversations, difficulties in making eye contact, a lack of facial expressions, and difficulties in adjusting behaviors to fit different social situations.

• Obsessive and repetitive patterns of behavior, interests, or activities. These may include unusual and constant movements, strong attachment to rituals and routines, and fixations on unusual objects and interests. These may also include sensory abnormalities, which have always been commonly seen in children with ASD but were not used previously to diagnose ASD. Children with sensory abnormalities may be hypersensitive to certain sounds, textures, or lights. They may also be unusually insensitive to things in the environment that usually cause pain, heat, or cold.

The new criteria note that symptoms must begin in early childhood and disrupt a child's day-to-day functioning. In addition, diagnosis must take into account an individual's age, stage of development, intellectual abilities, and language level.

If you have any concerns about the diagnosis your child receives or questions about DSM classification or terminology, talk with your child's pediatrician.

What We Know and Don't Know About Autism

We're a long way from the days when Dr Bettelheim pointed to parents for a child's autism. We now know that it is a neurodevelopmental disorder, something that occurs in the early formation of the brain. We also know the importance of early diagnosis and treatment and now have the tools to help us determine whether a child has or is at risk for ASD. To that end, organizations such as the Centers for Disease Control and Prevention and the American Academy of Pediatrics have waged successful public awareness campaigns such as "Learn the Signs. Act Early." (www.cdc.gov/actearly) to promote surveillance and screening that leads to early diagnosis. This has made early treatment possible for the benefit of millions of children. In addition, we know that certain therapies are more effective than others at treating symptoms.

For example, developmental and behavioral interventions are the mainstay of supporting individuals with ASD. Behavioral interventions focus on changing specific behaviors and symptoms. As these behaviors change, social relationships and mastery of basic developmental capacities improve. There are several different types of behavioral interventions (see Chapter 4). Studies have consistently shown that children with ASD who use intensive and systematic behavioral principles to reinforce developmentally appropriate skills from a young age have improved social communication, intelligence, language, behavior, and self-help skills when compared with children with ASD who do not.

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Excerpted from "Autism Spectrum Disorder"
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Copyright © 2019 American Academy of Pediatrics.
Excerpted by permission of American Academy of Pediatrics.
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Table of Contents

Please Note,
Acknowledgments,
Chapter 1. What Is Autism Spectrum Disorder?,
Chapter 2. What Causes Autism Spectrum Disorder?,
Chapter 3. How Do I Know if My Child Has Autism Spectrum Disorder?,
Chapter 4. Behavioral and Developmental Interventions to Support Children With Autism,
Chapter 5. Tapping Educational Services,
Chapter 6. When Other Therapies Aren't Enough: The Role of Medication,
Chapter 7. The Role of Integrative, Complementary, and Alternative Medicine,
Chapter 8. Partnering With Your Pediatrician,
Chapter 9. Services in Your Community,
Chapter 10. Accessing Care,
Chapter 11. Adolescence and Beyond,
Chapter 12. Putting It All Together: Everyday Strategies for Helping Your Child,
Chapter 13. Autism Spectrum Disorder and Your Family,
Chapter 14. The Future of Autism Spectrum Disorder,
Chapter 15. Advocating for Children With Autism Spectrum Disorder,
Afterword Shana's Special Wish,
Appendixes,
A. Resources,
B. Emergency Information Form for Children With Autism Spectrum Disorder,
C. Early Intervention Program Referral Form,
D. Medication Flowchart,