Read an Excerpt
At every age, at every level, people with Asperger syndrome and similar autism spectrum disorders too often fail to gain access to or sustain participation in social, emotional, educational, vocational, and recreational situations they consider meaningful or desirable.
The skills that they need for independence are often mistakenly considered "simple" and "easy" enough to be learned without intensive intervention, direct teaching, and guided practice. However, we now know that having Asperger syndrome and other forms of autism spectrum disorders complicates the learning--and the teaching--of these "basic" skills.
There are specific, research-based, and data-driven strategies and techniques for teaching these skills. Most of them are based on applied behavior analysis, or ABA. While we can do little to change how someone with Asperger syndrome learns, we can do much to change how we teach.
For many of these skills, the best place to learn is at home, and the best-qualified teachers are parents and others who care.
Is this your home?
Is this your child?
Nine-year-old Sally’s friend Beth just knocked on the door. Beth is the ideal buddy for Sally: kind, understanding, and tolerant of Sally’s Asperger/autism quirks and odd phobias. This is a perfect--and all too rare--social opportunity.
“Come on, Sally,” Beth says. “Let’s go!”
“Wait for me! Mom has to tie my shoes.”
While Beth waits at the screen door, Sally roams through the house whining “Mooooommmmmm!” until she finds Mom halfway through infant brother Nick’s diaper change. A typical five-year-old would read her mother’s tone of voice and follow her request to wait. But Sally can’t do that, so she melts down, crying and stomping her feet. Overhearing the commotion through the screen door, Beth looks around nervously. She knows that Sally is “different,” and she’s witnessed some of these tantrums before, in class, right before Sally’s special teacher takes her out of the room. Maybe, Beth thinks, Sally doesn’t really want to play after all. Two minutes later, when Mom finally can tie Sally’s shoes, Sally is in such a state of emotional upset that she can’t go out to play. And it doesn’t matter anyway, since Beth has taken what she assumes is the hint and gone off in search of another playmate, someone who is not such a “baby.”
Ten-year-old Tommy has just received his first invitation to a sleepover with a group of boys at his church. Though Tommy has Asperger syndrome, he attends his neighborhood school, has been successful implementing his new repertoire of social skills during specially structured group activities led by the school psychologist, and has recently started talking about wanting to “be like the other kids.” He’s even made a couple of friends who share his interest in all things Pokemon.
Tommy’s father, Craig, stares blankly at the colorful flyer announcing the sleepover, listing drop-off and pickup times, a night full of activities, and a supplies list. As Tommy anxiously pulls at Craig’s arm, begging, “Can I go, Dad? Can I go?” his father wonders what the adult group leaders will say if he asks them if it’s okay for him or his wife to drop by around bedtime. Despite years of occupational therapy and countless attempts to teach him his bedtime routine, Tommy still needs help brushing his teeth, washing his face, and attending to the finer details of toileting hygiene. Already a veteran of teasing from older bullies at school, Tommy can’t go it alone, and Craig knows it. What will the other ten-year-olds think when Mommy or Daddy shows up at the sleepover? He’s overheard some of the kids at the bus stop calling his son a “weirdo” because Craig or his wife waits with him until the bus comes. Either way, it is a risk. Craig starts racking his brain for a way to tell Tommy that the family has “other plans.”
Sixteen-year-old Adam scowls as his older brother, Aidan, sits staring at the flat screen and furiously kicking his ninja opponent by clicking the buttons on his Wii controller. “It’s not fair!” Adam whispers just loudly enough to ensure that his mother hears. “Every night, it’s ‘Adam, set the table’ ”--the dull thud of stoneware plate against the woven cotton placemat--“ ‘Adam, fold the towels’ ”--a louder thud--“ ‘Adam, load the dishwasher.’ ”
After a long day reviewing briefs on her next case, Christine is beat. But, as she often says, nothing that crosses her desk at work is ever as hard as what she does at home. Adam has a valid complaint--one she’s heard a thousand times. And what can she do about it? Aidan is Aidan; he will always be Aidan. It isn’t fair, but life isn’t fair.
“You know why!” she hisses, crossing the kitchen to stand close enough to Adam to stop him from thunking down the next plate. With her hand on his, Christine looks into Adam’s eyes as she says, “You know Aidan can’t do these things. You know--”
“It’s the Asperger’s. Right, Mom, I do know. How could I not? It’s the reason he can’t do anything around here, and the reason I can’t hang out with my friends, because I have to do everything he can’t.”
Christine pats her son’s shoulder. “I know, honey, but it’s just his fine-motor skills--”
“Like what he’s using right now, playing with his video game?”
Do these scenarios sound familiar?
They may if you are one of the millions--parents, grandparents, family members, friends, or teachers--who know and care about a child with Asperger syndrome, a child like Sally, Tommy, or Aidan. These are the kids who have come a long way in growing through an early diagnosis of autism spectrum disorder (ASD), kids for whom we all share high hopes and in whom we sense uncharted potential. Yet despite years of special education, intervention, social skills, and other therapies, we find these kids stuck, stranded, and left behind academically, socially, or emotionally.
Is this your child?
At every age, at every level, individuals with Asperger syndrome (AS) and similar ASD learning profiles too often fail to get access to or sustain participation in social, emotional, educational, vocational, and recreational situations they consider meaningful or desirable. Dr. Ami Klin, chief of the Division of Autism and Developmental Disabilities at Emory University School of Medicine, and director of the Marcus Autism Center, in Atlanta, says, “There is an enormous discrepancy between their cognitive power and their ability to negotiate everyday life.” One reason is that they often have failed to acquire skills or learn behaviors needed to pursue socially relevant, personally fulfilling goals with no assistance or with the least amount of assistance possible. Many of these skills are often mistakenly considered simple and easy enough to be learned without intensive intervention, direct teaching, or practice.
HOW DID WE GET HERE? FROM OVERLOOKED TO OVERQUALIFIED FOR HELP
Interestingly, the need for intensive, structured, and data-based instruction and practice in these areas is well recognized and addressed for children with other forms of autism and types of learning and cognitive disorders. Little ones with autistic disorder or pervasive developmental disorder--not otherwise specified (PDD-NOS) tend to be identified while still babies or toddlers. They typically receive between ten and thirty hours a week of highly specialized one-on-one teaching--applied behavior analysis, or ABA--either in their homes or in special schools and programs.
In contrast, most kids with Asperger syndrome follow a strikingly different course. Most often, they are not identified while still young enough to receive special education services prior to kindergarten, or else their ability to speak, combined with higher scores on evaluations that favor verbal performance, places them above the cutoff to qualify for services. This means that these families lose the opportunity to have specialist teachers and therapists in the home teaching not only the child but also the parents, so that they can learn how to incorporate these strategies into their parenting repertoire.
Once kids have been identified as having AS, many education professionals view teaching the needed skills as the parents’ responsibility. (Interestingly, this is not the view when it comes to children who are less cognitively able.) By the time most children enter kindergarten, the spotlight of special education has shifted from early intervention’s mission to foster development of the “whole child”--encompassing not only language and cognitive skills but also self-help, daily living, and social skills--to the student. In the world of the school, if a child’s particular deficit does not adversely affect the acquisition of academic skills--reading, writing, and arithmetic, in addition to the factoids kids need to survive the avalanche of standardized testing--odds are it will not be addressed. The take-home here: Mom and Dad are on their own.
Too often, the result is bright kids who make a confusing and sometimes unfortunate impression on adults and peers. These are children who can speak knowledgeably and in detail on complex topics yet leave the restroom with their clothing askew or fail to grasp simple table manners. They may have done the hard work of developing social skills yet be cruelly rejected by their classmates because they lack basic dressing, toileting, hygiene, and eating skills. They may experience anxiety unnecessarily or be at risk both at home and in the community because of their lack of basic safety skills. Most important, because these children struggle with a gamut of social challenges daily, deficits in basic skills take an even greater toll by adding to an impression of difference, immaturity, and dependence. And this is not to mention how readily these skill deficits invite teasing and bullying from peers.
WHY THIS BOOK
This book evolved over many years of experiencing as a parent and witnessing as a special educator what happens when kids have problems because they lack basic independence skills. Via internet message boards, telephone calls, conference questions, emails, online surveys, and individual interviews, parents shared their frustration and fear that the lack of what most of us would consider a simple, basic, everyday skill would be their child’s Achilles’ heel--the one thing about her that would push out of reach something she desired, deserved, or needed now or later in life. Certainly for any young person with Asperger syndrome, there is plenty to do and much to work on--academics, emotional understanding, social skills, and so on--and every area is important. For some children with Asperger syndrome, however, the basic independence skills that support and provide access to a wider world, or at least to the world of their choosing, are missing or incomplete. Think back a moment to Sally and Tommy. Their wanting to be with their friends, and their having found friends who want them there, too, are the really big accomplishments. How sad and unfair that both miss a chance to do what they want to do for lack of a simple, teachable skill. That’s the goal of this book: to instruct parents and other teachers how to teach age-appropriate skills for independence.
Why not? One of the interesting side effects, if you will, of living with a child with a lifelong disability or other serious problem is a changed sense of ourselves as parents. Parents who do not find themselves having to rely on the opinions of experts to make important decisions are safe to go it alone or do just fine, thank you, with the advice of family and friends. Familiarity with the basics of child care and development and a faith that children’s abilities unfold in a familiar, predictable developmental progression give these parents confidence in their decisions. For those parenting a child with something such as Asperger syndrome, the experience can be strikingly different. Even the most experienced, sure-footed mom or dad becomes a beginner when a disability is determined. More than parents of children who do not face serious problems, parents like us are more afraid of making a mistake. We research (and research and research) our choices; we talk to anyone we believe might know something. We network, we share, we commiserate. But one other thing that some of us do--and that most of us never admit--is lose a little faith in our own judgment of what our priorities and expectations as parents should be. While we might have a finely tuned idea of what constitutes good table manners or a neat appearance, or what independence looks like, the awareness of our children’s disabilities and resulting challenges sometimes causes us to edge back a bit. Should we hold our children to the same standards we would expect if there were no AS? My personal thoughts ran along the lines of “So many things are so much harder for him. Can’t I just give him a break on [fill in the blank]?” I know I’m not alone. Is this desire to protect my child, to spare him stress or frustration, understandable? Of course it is. But does it always lead to decisions that are in the best interest of a child with a condition such as AS? Probably not.
Having a child with a disability requires us to accept certain facts and, sadly, usually some limitations. However, it does not mean that we or our children have to settle for less than what is realistically possible.
ABOUT THIS BOOK
This book is written specifically for parents and other teachers of young people who have been diagnosed with Asperger syndrome; those with high-functioning autism (HFA), atypical autism, or PDD-NOS who, based on professional evaluation, may seem to have grown into the Asperger category; or those who have academic, social, recreational, or vocational goals that acquiring these skills would help them meet. Throughout the book, when I write “AS and other ASDs,” I’m referring to Asperger syndrome, so-called high-functioning autism, and PDD-NOS accompanied by verbal skills and average-range (or higher) cognitive abilities.
Why not write a book for everyone under the autism spectrum? First, as we will see later, children with forms of ASD whose history or learning profile resulted in their receiving special education and related services through early intervention or preschool services may have had or currently have access to teachers and programs that provide instruction in these skills. Second, there exists a handful of books written specifically to address the needs of parents with children who are nonverbal, whose speech did not emerge until after age three, and/or who have continuing delays in language or cognitive skills. The best are listed under “Bibliography and Sources” in the back of the book. Third, because of Asperger syndrome’s unique learning profile, parents of children with AS must prepare them to function comfortably in a wider range of current and future academic, social, recreational, and vocational settings. Further, they should also prepare them to do so with very little supervision or even none.
The book is written with the following assumptions about the young person you will be teaching, regardless of his or her current diagnosis. He or she:
Has no history of language or speech delay at age three, or if there was such a history, the child is now considered verbal (meaning he speaks in full sentences and engages in reciprocal conversation even if it is unusual in terms of topic, level of detail, appropriate response to listeners, and so on)
Can understand oral explanations of the skills and why they are worth learning
Has a full-scale minimum IQ of 70, even with learning disabilities
Follows one-step and two-step spoken directions
Does not engage in any behaviors harmful to himself or others related to the activities we will be covering
It is important to note that while most of the strategies presented here are based on the science of applied behavior analysis (ABA), following these strategies does not necessarily mean that you are “doing” ABA, nor will reading this book make you competent in the science. Once parents and teachers learn about and understand ABA, one of the first things they say is, “That just makes sense,” and it often does. However, behavior analysts bring a lot more technical training, practice, and judgment to a problem, even when the solution looks like common sense. If your child is having serious learning or behavior issues, do seek the assistance of a Board Certified Behavior Analyst (BCBA) (see box on page 110).
From the Trade Paperback edition.