Making Sense of Autistic Spectrum Disorders: Create the Brightest Future for Your Child with the Best Treatment Optionsby James Coplan
For more than thirty years, James Coplan, M.D., has been helping families
In this authoritative and empowering book, one of the world’s leading experts on early child development gives caregivers of children on the autistic spectrum the knowledge they need to navigate the complex maze of symptoms, diagnoses, tests, and treatment options that await them.
For more than thirty years, James Coplan, M.D., has been helping families cope with the challenges posed by autistic spectrum disorders (ASD). Each family that walks into his office, he knows, is about to begin a journey. With this book, he lays out the steps of that journey. Dr. Coplan brings you into the treatment rooms and along for the tests and evaluations, and provides the kind of practical hands-on guidance that will help you help your child with ASD through every phase of life.
At a time when ASD has become the subject of wild theories and uninformed speculation, Dr. Coplan grounds his recommendations in reality. He helps you understand for yourself where your child may be on the spectrum that includes autism, Asperger Syndrome, and Pervasive Developmental Disorder-Not Otherwise Specified. His clear, comprehensive, and compassionate advice prepares you to make informed medical decisions, evaluate the various educational and therapeutic alternatives, and find answers to such fundamental questions as
• How do I optimize my child’s long-term potential?
• Which interventions will best serve my child?
• How do the various therapies work, and what is the evidence to support them?
• What is the best way to teach my child?
This book empowers you to be an expert advocate for your child, so that you’ll know when to say no to an ill-advised therapy or medication and can make with confidence the hundreds of important decisions you will face in the years ahead. For every parent who has made the painful transition from “Why did this happen?” to “What can we do to help our child?,” here is the indispensable guidebook you’ve been waiting for.
From the Hardcover edition.
“Dr. Coplan has given parents a concise road map for navigating their journey through the maze of services, therapies, and programs available for their children. I wish I’d had this sooner!”—Stacy Groder, board member of the Autism Society of America
“I highly recommend this book for families whose child has an autistic spectrum disorder, and it will also prove helpful for therapists, educators, and providers who want to learn more about ASD.”—Randi J. Hagerman, M.D., medical director of the M.I.N.D. Institute
“An engaging guide for both professionals and parents, written authoritatively from a most important perspective on children with autistic spectrum disorders.”—Janet A. Deatrick, Ph.D., FAAN, associate professor and associate director, Center for Health Disparities Research, University of Pennsylvania School of Nursing
“The journey of raising a child with ASD can be frightening, exhausting, and overwhelming. With the information contained in Making Sense of Autistic Spectrum Disorders, parents of newly diagnosed children will find this journey easier and may also enjoy the magical moments that are part of raising a child on the spectrum. I wish this book had been available when my son was diagnosed eleven years ago.”—Margaret S. Price, attorney at the Price Law Firm
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Read an Excerpt
Patterns of Development
Our child is off the beaten path. —Parents of a child with autistic spectrum disorder
Three Young Friends
I’d like you to meet three youngsters who can help illustrate the many facets of autistic spectrum disorder (ASD). I’ve referred to these children as friends, not because they know one another (they are all fictionalized, composite versions of patients of mine, as are all the patients mentioned in this book), but because the children whom I evaluate eventually come to regard me as their friend. The best way to get a child to reveal himself or herself to me, and to work with me, is to befriend the child. Sometimes this means getting down on the floor and playing with the child (I’m always wearing out the knees of my slacks). Sometimes it means letting the child explore the train memorabilia in my office, or letting him or her play with various sensory toys I keep stashed away (a battery-operated spinner, blinking rubber balls, etc.). And at all times it means respecting children and accepting them for who they are, even as I may try to reshape their behavior into more adaptive patterns.
You’ll meet these three children as I did, when their parents brought them to me, and perhaps you’ll get a sense of how a developmental pediatrician approaches the process of assessing a child, getting to know the family, and determining the next steps. In later chapters we’ll come back to these three children, to see how their stories have progressed. As you will see, all three of these children are boys. Males outnumber females with ASD about three to one. There are plenty of girls in this book, but for these three examples I’ve kept the gender the same, in order to avoid confusing severity with gender- related issues.
Kevin, Age Thirty-Three Months
This visit starts like so many others. “Kevin has delayed speech” is the first thing Kevin’s parents tell me. “He jabbers like he’s speaking a foreign language. We think he understands us when we say no, but he usually doesn’t listen to us when we speak to him or ask him to do things. He tunes us out. For a while we thought he might be deaf, but the audiologist said his hearing is fine. He manages to get his point across by pulling us where he wants us to go, and then putting our hand on what he wants.”
“Is there anything else that worries you?” I ask.
“He has this weird fascination with people’s earlobes. Whenever we hold him, all he wants to do is stroke our earlobes. And he is the master of routines. At bedtime, we have to do things exactly the same way each night, or he flips out.”
“What does he do for play?”
“He loves his beads-on-a-wire toy. That can keep him busy for hours. Or flipping through the pages of a book—not really looking at the story, just flipping the pages. Or rolling one of his toy cars back and forth and watching the wheels go around. When he gets really excited, he spins himself around, or walks on his toes. He does like to be tickled or be chased by his dad around the room as a game. But otherwise he’d rather sit by himself and play with the beads.”
Just these first few snippets of conversation with his parents have me concerned. They’ve already mentioned several warning signs of ASD: rigid, repetitive behavior; fascination with spinning objects; limited play skills; odd physical mannerisms; and across-the-board language delay.
As for his other skills, Kevin’s parents report that he is finger- feeding (a seven-month skill) but still not using a spoon, a critical milestone that he should have reached eighteen months ago. When I ask what Kevin does with crayons, they immediately reply, “Oh, we can’t give him crayons! He would just eat them.” Toddlers normally transition from using a crayon as a teething object to using it as a writing implement around twelve to fourteen months of age, the same age at which they learn to use a spoon. Kevin’s delayed use of the spoon and crayon as tools worries me. ASD alone would not account for this deficit, raising the possibility of global cognitive delay, and an eventual diagnosis of mental retardation.
On examination, Kevin makes virtually no eye contact, and his vocalization is limited to crying. He follows no verbal commands with or without gestural cues from me (such as putting out my hand while saying “Give me . . .”), and he doesn’t copy me when I build with blocks or draw with a crayon. He is not being uncooperative. Rather, he is unaware of me or my intentions. He’s cut off from others, incapable of being either cooperative or uncooperative.
On the other hand, Kevin interacts directly with the test materials as long as he isn’t required to observe or copy another person. We call this stimulus-driven behavior. In other words, the physical aspects of the item itself “drive” the child’s behavior; it’s almost as if the shapes “want” to go into the holes, or the bell “wants” to be rung. The child responds directly to the object without any need to relate to the adult. This is normal in a seven-month-old shaking a rattle or a sixteen-month-old fitting shapes into a shape sorter. By Kevin’s age, however, a child’s behavior and use of objects should be much more attuned to social cues, and the functional use of an object— driving a train, feeding a doll, looking at a book, or imitating a grown-up—rather than merely interacting with an object at the level of its physical properties. Preschool children with ASD generally do well on stimulus-driven tasks but stumble when they have to take cues from another person. I’ve seen many children with ASD complete complex shape-matching tasks such as puzzles, yet fail on the simplest imitative task, such as stacking two blocks. It’s not that the child doesn’t know how to stack; the missing link is the child’s inability to appreciate that he or she is expected to imitate an action modeled by the adult. Kevin successfully completes the pegboard task (designed for children of fourteen to sixteen months), but it’s strictly between him and the pegboard. Rather than looking up for approval after completing the task, he twirls one of the pegs in front of his eyes. Based on Kevin’s developmental history, my observations, and the results of standardized tests, I diagnose Kevin with autism. Based on the history of delayed adaptive skills (not using a spoon as a tool, for example), I also diagnose developmental delay.
Darryl, Age Twenty Months
“We’re worried because he doesn’t speak,” Darryl’s mother begins, “He babbles and says ‘mama,’ but sometimes he says ‘mama’ because he’s distressed or uncomfortable, not just to mean me.” Delayed speech in early childhood is the concern or symptom I hear about most often from parents. However, I’m interested in comprehension as well as speech. I want to know if Darryl recognizes his own name. (Typically, infants respond selectively to their own name at around nine months.) “I think so,” Darryl’s mother says, “although sometimes he acts as if he doesn’t hear us.”
I ask more questions. Does he follow simple commands, like “Come here” or “Give me . . .”? Children typically start following commands at about twelve months, but Darryl’s mom tells me he started doing so only a month before the visit. I make a mental note that his receptive language may be delayed, along with his speech. Does he play gesture games, like patty-cake or peek-a-boo? I ask. “He occasionally copies us, but he never starts it himself,” his mother replies. (A normally developing child will start enjoying such games at seven to nine months, just copying the parents at first, and will generally start initiating these activities by ten to twelve months.)
Next I ask if he points and then looks at his parents. Pointing is a critical communication activity, parallel to speech, and typically emerges at about the same age, that is, around twelve months. “No,” his parents tell me, “and he doesn’t look where we’re pointing, either.” At this point, I’m becoming concerned that Darryl not only has delayed speech but delayed language, a more global problem encompassing speech, listening comprehension, and understanding of visual or nonverbal communication.
I turn to fine motor and adaptive (self-care) skills, which are important clues to a child’s overall mental development. For example, the ability to use a spoon is more than just a fine motor skill; it also reveals cognitive development, because the child understands the function of the spoon as a tool. Darryl’s parents tell me that he learned to use a spoon at around fourteen months, which is right on schedule, and is now cooperating with dressing and undressing by inserting his arms in the sleeves of his clothes. This is good; Darryl’s non-language-related adaptive skills and fine motor skills are emerging on schedule, which gives me some assurance that his level of general intelligence may be normal. As for gross motor skills, Darryl walked at fifteen months and began running at eighteen months— the upper limit of the normal range.
Next, I ask about play, an important developmental activity that reflects a child’s motor, cognitive, and language abilities simultaneously. Darryl’s parents are able to engage him, and he loves to listen to stories. Less promisingly, they describe him as “fascinated” by lights, fans, as well as stop and exit signs. He studies objects out of the corners of his eyes, “obsesses” over opening and closing closet doors, and memorizes videotapes. When he is excited, he flaps his hands or clenches his fists.
When I examine Darryl, I find him alert but difficult to engage. He makes only brief, inconsistent eye contact, and his vocalization is limited to occasional babbling. I ask him, “Where’s the ball?” and in response, he smiles at me, turns, and retrieves a tennis ball, demonstrating an ability to follow one-step commands with no gestural cue. At other times, however, I find it almost impossible to engage him. He gravitates to the illuminated exit sign in my waiting room, flapping his hands in excitement. I test Darryl’s problem-solving abilities—putting shapes into holes, retrieving hidden objects, and so on—and these cluster around the sixteen- to eighteen-month level. He is generally calm, with occasional bursts of agitation.
Based on the developmental history, my observations during testing, and the results of various standardized tests, I diagnose Darryl with pervasive developmental disorder, not otherwise specified (PDD-NOS).
Teddy, Age Seven Years
Teddy was referred by the guidance counselor at his elementary school for behavior problems in class and at recess. Teddy’s parents seem perplexed, explaining that their son is bright and highly verbal, but there is something “off” about his social interactions, and the other kids act wary of him.
“Teddy doesn’t understand the unwritten rules of the playground,” they lament. “He doesn’t know how to go up to another child and start a conversation or join in with other kids’ play. Sometimes he thinks he is another kid’s best friend when he hardly knows the child. At other times he thinks other children are being mean to him when no insult was intended. We’ve always felt that Teddy was a bit different from other children, but it was never a problem until he started school.”
When I probe further into his history, things become a little clearer. “He was a high-needs baby, always fussy,” his parents tell me. “Later, when he was able to get around, he was very curious about how things worked. One thing would take over for a while, then he would move on to the next thing. At first he was fascinated by ceiling fans. When he was three years old, he used to nag us to take him to Home Depot and Sears so he could study the fans. Then he was into trains, then airplanes. For the past year or so, he’s been fascinated by the Titanic, reading books about it and making models of it with the cushions and bar stools in our den.
“He’s always been a talker. By his first birthday, he was making two- word phrases, and he was speaking in sentences by a year and a half. But sometimes he asks the same question over and over, or dwells on the same topic forever, like the Titanic. By his third birthday, he started teaching himself to read. But all he wants to read about is the Titanic.”
As I do in every interview, I ask about Teddy’s fine motor and adaptive skills, and learn that Teddy has struggled with coordination. “He couldn’t get the hang of using a spoon until eighteen months, and even now he’s messy. He couldn’t do buttons until his fourth birthday, and he still can’t tie his shoes or cut food with a knife and fork. Handwriting is a huge challenge for him.” As for his gross motor skills, I learn that he walked at fourteen months and could run at two years, but he couldn’t pedal a tricycle until age five, when all of his cousins were riding theirs at three (the usual age). “And he’s still afraid to ride a bicycle,” his father adds, “even with training wheels.”
When I examine Teddy, I can see what his parents mean by his interactions being “off.” He tends to look over my shoulder as he answers my questions. He crowds into my personal space, coming almost nose to nose with me. One time he even blows a raspberry in my face. I sense his behavior not as testing limits, as might be the case in a child with normal development, but as reflecting a lack of awareness of social boundaries. His activity level is increased and his attention span is decreased for a child his age. He does indeed have fine motor clumsiness. He can answer simple factual questions, such as “How many legs does a dog have?” He also has some remarkable talents: not only does he know his birthday, he also can tell me which day of the week it fell on last year. (This is called a calendar savant skill, from the French word savoir, meaning “to know.” Some children with ASD have remarkable savant skills in isolated areas, such as calendar facts, schedules, and similar list-based information.)
Teddy is verbal and uses grammatically appropriate sentences, but his tone of voice is another clue that he has a problem. His speech is stilted, mechanical, and formal—he sounds like a little professor. The only time he becomes animated is when I steer the discussion to ocean liners, at which point he launches into a lengthy lecture on the sinking of the Titanic. I diagnose Asperger syndrome (AS) on the basis of Teddy’s developmental history, his behavior during the examination, and the results of standardized testing.
What’s in a Name?
Most physicians speak of Asperger syndrome (without the apostrophe) rather than Asperger’s Syndrome. The condition is named for the pediatrician Hans Asperger, who in 1944 described children with a specific group of behavioral patterns, but he doesn’t own it! Psychiatrists and the nonmedical community still embrace the apostrophe.
On the Spectrum
You don’t need a laboratory test to spot your mother in a crowd. You recognize her by a pattern of features—what her face looks like, how she walks, how she sounds, what she wears, and so on. Some medical conditions are recognized in the same way; without a specific laboratory test, doctors need to rely on a pattern of symptoms to arrive at the correct diagnosis. Syndrome is the term doctors use for a pattern of clinical features (physical characteristics, unique behaviors, or particular complaints) that occur together. Some syndromes have a confirmatory laboratory test, while others do not. For example, Down syndrome (DS) is diagnosed on the basis of several distinctive physical features (slanted eyes, flat nasal bridge, short fingers, and so on) as well as a specific lab test (which detects an extra copy of chromosome 21). Tourette syndrome, on the other hand, is diagnosed purely on the basis of history and observation: multiple tics, including vocal tics, for at least twelve months. Like Tourette syndrome, autistic spectrum disorder is diagnosed solely through the developmental history plus observation of the child’s behavior—there is no lab test. We have lab tests for some of the underlying medical disorders that can cause ASD, but there’s no laboratory test for ASD itself.
From the Hardcover edition.
Meet the Author
James Coplan, M.D., is one of the few physicians in the world to be board-certified in both developmental-behavioral pediatrics and neurodevelopmental disabilities. Trained at New York Medical College and the Johns Hopkins University, for eighteen years he directed resident training in child development at Upstate Medical Center in Syracuse, New York, followed by an appointment as director of interdisciplinary training in developmental disabilities at The Children’s Hospital of Philadelphia. Now in private practice in Rosemont, Pennsylvania, he specializes in the care of children with ASD. He continues to teach at the University of Pennsylvania and is a frequent speaker at the local and national level.
From the Hardcover edition.
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