The Autism Sourcebook

Everything You Need to Know About Diagnosis, Treatment, Coping, and Healing--from a Mother Whose Child Recovered

Karen Siff Exkorn

• Publisher: William Morrow
• Year: 2009
• Print ISBN:
  9780060859756
• eBook ISBN:
  9780061738388
• Topic: Medicine
• Subtopic: Medicine Biographies

PART I:

DIAGNOSIS

There is nothing either good or bad, but thinking makes it so.

—WILLIAM SHAKESPEARE

Don’t ask for a light load, but rather ask for a strong back.

—UNKNOWN

At his second birthday party, we found our son, Jake, lying facedown in the driveway, his cheek pressed into the gravel. He did not look at us or talk to us. It was as if we—his own mother and father—were not there.

Two weeks later, Jake was diagnosed with autism.

In the first seventeen months of his life, Jake hit every developmental milestone: he crawled, he walked, and he talked. He was within the age-appropriate weight and height percentiles. By all accounts, he was a typical child. And then, over a six month period, Franklin and I watched as our once active and talkative toddler gradually developed into a lethargic and silent little boy. It was as if, one by one, all of the circuit breakers in his brain were clicking off.

Something was affecting Jake’s overall development. His coordination was off. He couldn’t keep his balance while running or going down the slide. His behavior changed. Jake no longer showed any interest in playing with other children—he hardly even played with his toys. Apart from turning light switches on and off and opening and closing all the doors in the house, his favorite activity was lying on the floor and staring. He also began to have full-blown, horrific tantrums that looked and sounded like nothing I’d ever seen—complete with shrieking and sobbing that caused him to hyperventilate. But aside from the tantrums, Jake was quiet. And honestly, I think what disturbed us the most was his silence. Our house used to be filled with the sounds of his laughter and his raspy, little voice. But the house became so much quieter as Jake’s vocabulary dwindled to only a few words. Then, shortly after his second birthday, Jake stopped speaking entirely.

Franklin and I were alarmed and confused. We tried talking more, filling in the silence with empty chatter in the hopes of motivating Jake to start talking again. But nothing happened. Then we tried talking less, thinking that maybe Jake needed more space to express himself. Still nothing. Jake stopped responding in general, not even looking at us when we called out his name. The affectionate boy who freely gave us hugs and kisses was gone. Now, Jake’s whole body stiffened whenever we tried to hug him. He could no longer tell us what he wanted—not even by pointing. Jake would shake his whole hand in the direction of the kitchen cabinet to let us know that he was hungry. We’d end up pulling out box after box of cookies, crackers, and snack foods to try to figure out what he wanted. Sometimes his grunting indicated that we’d found the right snack. Other times his sobbing indicated that we hadn’t, usually after we had emptied out the entire cabinet. We just couldn’t figure out how to give our son what he wanted—whether it was food or anything else.

“He’s a boy. Boys develop later than girls,” our family pediatrician replied when I expressed our concerns. For each of Jake’s symptoms, he had an explanation. Jake didn’t speak because he was either shy or obstinate. He didn’t play or behave like other children because all children are different. “You should stop being so competitive by comparing him to other children on the playground,” he told me. When I was concerned that Jake’s tantrums bordered on hysterics, the pediatrician said, “Move the furniture so he won’t get hurt.” He repeatedly told me not to worry, chalking up Jake’s behaviors to the “terrible twos.”

But I did worry. Something wasn’t right with Jake. He was drifting further and further away from us.

For months, I listened with gnawing uncertainty to the pediatrician. Then, one day, I stopped listening. I was Jake’s mother, after all, and I knew my own son better than anyone—including the doctor. That’s when I started listening to what my instincts had been telling me for months. I took Jake to another doctor and another one after that. When I finally got to the bottom of it, when I finally found the right doctor to tell me what was the matter with our son, I heard the words that no parent wants to hear: “Your son has autism.”

At that moment, I wished nothing more fervently than that our family pediatrician had been right all along….

1

THE MANY
FACES OF AUTISM

His parents called Nathan their “gentle giant.” At age six, he was big for his age but wouldn’t hurt a fly. He appeared to be shy and fearful at all social activities—from playing with other kids to looking his mom and dad in the eye. Nathan’s favorite activity was jumping on the trampoline all by himself in his backyard. He seemed to live in a world of his own and had never uttered a word in his life.

At age four, Michael could tell you everything about the life cycle and migratory patterns of the monarch butterfly. He’d even taught himself about photosynthesis. Although clearly intellectually gifted, Michael could not hold a two-way conversation. Instead, he preferred to lecture nonstop about a subject with which he was obsessed, such as butterflies or train schedules.

Blonde-haired, blue-eyed Samantha, age three, was a bundle of energy—always racing aimlessly around the house and flapping her hands. She had an uncanny habit of echoing people’s language—using the exact same words and intonation—and could recite entire passages from a Disney video after having seen it only once.

At age two, Jake, who used to be messy and throw his toys around like most kids his age, was now lining up his trains in perfectly neat rows. He would often take a train, lie down on his belly, and push the train on an imaginary three-inch track, his eyes carefully following the wheels of the train. He could entertain himself in this manner for hours.

These children seem so different, yet they have one thing in common: They were all diagnosed with autism.

A BRIEF HISTORY OF AUTISM

The word autism comes from the Greek word autos, which means self. Even though autism seems like a fairly new diagnosis, some of the earliest published descriptions of behaviors that resemble autism date back to the eighteenth century. It wasn’t until 1911 that Swiss psychiatrist Eugen Bleuler coined the term autism in his work with schizophrenic patients. He observed that his patients were isolated from the outside world and extremely self-absorbed.

Dr. Leo Kanner and Dr. Hans Asperger are considered the pioneers in the field of autism as we know it today. In the early 1940s, unbeknownst to each other, both men conducted research in which they described children as autistic—not in reference to schizophrenics, but to what we now know as the more classic definition of the word. Kanner conducted his research on children in the United States, Asperger in Austria. It’s a remarkable coincidence that these studies happened to occur at the same time in different parts of the world, and that both researchers used the word autistic to describe the children in their studies. Kanner’s definition of autism was referred to as early infantile autism or childhood autism. Now we just use the word autism. Kanner’s explanation is what we would consider to be the classic definition, where children display symptoms of impaired social interaction, lack of imaginative play, and verbal communication problems. Asperger described children with similar traits, except that his children seemed to have higher IQs and precocious language skills—they spoke like little adults. In the 1980s, Dr. Lorna Wing, psychiatric consultant for the National Autistic Society in the United Kingdom, coined the term Asperger’s Syndrome to differentiate the condition from classic autism.

What Does Autism Mean Today?

The word autism is the catch-all term that many people use when referring to the spectrum of autistic disorders. The more current term for autism is ASDs, or Autism Spectrum Disorders, and includes the following five diagnoses: Autistic Disorder, Asperger’s Disorder, Childhood Disintegrative Disorder (CDD), Rett’s Disorder, and PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified).

Many people used to subscribe to the myth that everyone with an ASD behaved like the Dustin Hoffman character in the movie Rain Man, who had the uncanny ability to remember complex combinations of numbers but couldn’t perform simple tasks like making toast. Or people subscribed to the myth that all children with ASDs were aloof and unresponsive, rejected hugs, and never showed affection. We now know that ASDs are much more complex, with a variety of symptoms and characteristics that can occur in different combinations and in varying degrees of severity. We also know that each individual with an ASD is unique, with a distinctive personality and individual character traits.

An ASD is not a disease, such as pneumonia or high blood pressure. (A disease is defined as an illness or sickness where typical physiological function is impaired). An ASD is a developmental disorder—a condition in which there is a disturbance of some stage in a child’s typical physical and/or psychological development, often retarding development. An ASD shows up in the first few years of a child’s life. It can affect a child’s abilities to communicate, use his or her imagination, and connect with other people—even parents and siblings.

As the name implies, ASDs are spectrum disorders, ranging from mild to severe. A child on the severe end of the spectrum may be unable to speak and also have mental retardation. A child on the mild end of the spectrum may be able to function in a regular classroom and even reach the point where he or she no longer meets the criteria for autism. No two children with ASDs are alike, even if they have the same diagnosis. One child with an ASD may be nonverbal and have a low IQ. Another child with the exact same diagnosis may have an above-average IQ. A third child may be verbally and intellectually precocious. The terms high-functioning and low-functioning are sometimes used to describe where a child is on the autism spectrum.

You can’t tell that a child has an ASD simply by looking at a picture of him or her. A two-year-old with an ASD can be the same height and weight and be just as adorable as a “typical” two-year-old. (“Normal” is not used in this book because it is a relative term, and one that is not widely accepted in the ASD world. The Autism Network International introduced a new term, neurologically typical or NT, to describe people without ASDs, which has been shortened to typical as the acceptable term in many publications). What distinguishes a child with an ASD from a typical peer is what you can’t see: the brain. This is why ASDs are known as invisible disabilities.

Because there is no medical test for an ASD, a child is diagnosed based on either the absence or presence of certain behaviors and skills. For example, if a child is still not speaking by the age of three, that is considered the absence of an age-appropriate behavior. If a three-year-old child engages in odd or idiosyncratic behavior, such as excessive hand flapping, grimacing, or aimlessly running back and forth across a room, that may be an indication of a developmental disorder.

What Are Early Signs of ASDs?

Most parents notice that something is not right with their children when the children are two or three years old. In some cases, parents pick up signs even earlier, when their children are in infancy. They may notice that their babies don’t look at them or seem to recognize familiar faces. Perhaps their babies don’t cry when they leave the room, exhibit anxiety around strangers, make babbling sounds, imitate gestures such as clapping and pointing, or enjoy playing games like peekaboo—all signs of a typically developing infant.

There’s no single personality type that represents the model of an ASD baby. Some parents of children with ASDs look back and describe their children as having been angels when they were babies, hardly making a peep and demanding very little attention. Others describe their children as screamers. Still others describe their babies’ behavior as typical—nothing out of the ordinary. According to the National Institute of Mental Health (NIMH), some possible early indicators of ASDs include the following:

• –does not babble, point, or make meaningful gestures by one year of age
• –does not speak one word by sixteen months
• –does not combine two words by two years of age
• –does not respond to his or her name
• –loses language or social skills
• –avoids eye contact
• –doesn’t seem to know how to play with toys
• –excessively lines up toys or other objects
• –is attached to one particular toy or object
• –doesn’t smile
• –at times seems to be hearing impaired¹

Parents may also notice that their child doesn’t meet the physical, mental, language, and social developmental standards that most typical children reach. Their one-year-olds may not imitate their actions when they clap or wave, or respond to their smiles, as most one-year-olds do. Their two-year-olds may not be able to understand simple two-step instructions (“Go get your cup, and put it on the table.”) or do such things as point to basic body parts (nose, ears, or eyes), identify objects, ask simple questions (or even speak at all), engage in common physical activities (jumping, running, or climbing), or draw circles and lines on paper—as most typical two-years-olds do. Typical three- and four-year-olds drive their parents crazy with constant “Why?” and “What?” questions, eagerly answer simple “Where?” and “Who” questions, enjoy picture books and being read to, and like to play with other children, whereas most three- and four-year-olds with ASDs do not. As toddlers, children with ASDs may not show their curiosity by leaning out of their strollers to look at things that interest them or pointing things out to their parents.

Sometimes a child with an ASD will develop unevenly—early in some areas, yet late in others—which can add to parents’ confusion. Children may walk early and talk later or talk early but have trouble with basic motor skills such as running and jumping. Or children may develop appropriate imitation skills as an infant, but then, as they reach toddler age, they may take their imitation skills to the extreme—copying and repeating the exact actions of other people without really understanding what they’re doing (a condition known as echopraxia).

Some parents have an easier time detecting very early signs of an ASD because they have other typical children at home with whom they can compare their child.

“How do we know what’s normal?” Franklin asked me when Jake stopped speaking.

He had a point. Jake was our first child. How did we know what was considered typical development? We had read the parenting books and had a sense of typical developmental milestones, but the books said there were always exceptions.

“You’re overreacting,” our pediatrician tried to reassure me when I expressed concerns about Jake’s loss of speech and his sudden lethargy.

While Jake’s loss of speech was the biggest red flag for us, it wasn’t until after Jake was diagnosed with an ASD that we were able to look back at what were identified as other early infancy red flags. Jake had trouble nursing (an early sign of oral motor issues), had an unusual combat crawl where he dragged himself across the floor (an early sign of gross motor issues, which involve the larger muscle groups), and didn’t walk until he was sixteen months old (quite late according to developmental charts). Other parents report not noticing infancy or toddler warning signs until years later when they watched early home videos of their children. It was only then they observed that their children didn’t imitate or engage in pretend play or know how to grip a crayon when they were supposed to.

Researchers are now convinced that the earlier children are diagnosed, the greater the chances that they will receive the maximum benefit from treatment intervention. A report from the National Research Council (NRC) of the National Academies of Science urges the National Institutes of Health (NIH) and the U.S. Department of Education to promote early routine screening of children for ASDs, similar to the routine screening that is done for hearing and vision problems.²

Which signs should you look for? Here is a list of questions that can help you detect the signs of ASDs. It’s crucial to keep in mind that a child who exhibits one or two of the listed behaviors is not necessarily on the autism spectrum. What makes these behaviors significant is that they occur frequently, intensely, and in clusters. This list should be used to alert you to some of the early signs of an ASD; it should not be used for official diagno...

Table of contents

• Cover
• Title Page
• Dedication
• Contents
• Foreword by Fred R. Volkmar, M.D.
• Note to Reader
• Part I
• Part II
• Part III
• Part IV
• Appendix A
• Appendix B
• Appendix C
• Appendix D
• Appendix E
• Appendix F
• Appendix G
• Glossary
• Notes
• Acknowledgments
• Searchable Terms
• About the Author
• Praise
• Credits
• Copyright
• About the Publisher