FOREWORD

When Jeanette and Keith’s daughter was diagnosed as having high functioning autism, their long search for an accurate diagnosis was over. However, they began a new search for knowledge on how to help her. They were determined to learn more about high functioning autism and Asperger’s Syndrome and how to provide effective programs for their daughter. They attended workshops and read the research journals and books that describe these conditions, but soon realized that there is remarkably little knowledge on remedial programs. Jeanette began to seek out other people who had worked with individuals with these disorders. She tapped into the experience of a variety of such people, including parents, teachers, speech therapists, occupational therapists, psychologists and applied behavioral therapists. She combined this knowledge with eleven years of experience working with her own daughter and with her training in pediatrics, and began writing social, behavioral, and abstract thinking skills programs for her daughter. These programs later became the foundation of this book.

It was while presenting a workshop in California that I met Jeanette. Her determination to learn more about AS, HFA, and treatment interventions included moving the whole family to Australia for three months to participate in the programs I was developing in Brisbane. While in Australia, Jeanette studied with me at my autism clinic and with two autism advisory teachers in the Brisbane region. In addition, we spent many hours assessing her daughter’s unusual profile of abilities and designing and implementing programs. We generated many new ideas that combined our respective experience. Jeanette subsequently incorporated many of these strategies into Navigating the Social World.

This “how to” book is written both for the novice and experienced professional and will be of enormous value to parents, teachers, and therapists. Jeanette has undertaken considerable work in designing handouts, worksheets and tracking forms that provide a structured, logical and progressive approach. There are clear explanations of the relevant issues for each goal and the activities are consistent with the theoretical models of autism and Asperger’s Syndrome. After reading this book you can immediately start a program at home or school.

There is a special focus on recognizing and coping with emotions, communication, social understanding, and abstract thinking with practical examples and quotations from individuals with Asperger’s Syndrome and High Functioning Autism. Jeanette adopts a common sense approach and I strongly recommend this book for parents, teachers and other professionals.

Dr Tony Attwood
August 2001

AUTHOR’S NOTE

When I originally started writing, this book was not even an idea in my mind. I wrote simply to provide a social skills and emotions program for my then ten-year-old daughter, Rachel. Rachel had just been diagnosed with high functioning autism (HFA) after years of puzzling physicians, teachers and my husband and me with her unique combination of strengths and special needs. After years of uncertainty about both her diagnosis and how to best help her with the multiple problems she faced, my husband and I reacted to the news of Rachel’s HFA diagnosis with relief. We believed we finally would be able to find an appropriate treatment program for her. However, we soon discovered that such a program was not going to be easy to find. Asperger’s Syndrome (AS) had only been recognized as a distinct diagnosis under the umbrella of Pervasive Developmental Disorders (PDD) in the DSM IV¹ in 1994. Thus it was no wonder that little was known about its diagnosis and etiology, and even less about how to treat it. In fact, my husband and I, both physicians, had never heard of either HFA or AS during our medical training. So we were sympathetic when the physicians and psychologists who diagnosed our daughter sent us on our way with the diagnosis, but were unable to suggest specific treatment programs for her. We turned to the next logical place for program options—our local school district—and found that the special education team, including special education teachers and speech and language pathologists, faced the same dilemma. They had little or no knowledge of this new diagnostic category and had had essentially no training in its remediation. Over the last few years we have spoken with many other families and professionals from different parts of the country who have faced the same lack of trained professionals and available programs for children with AS/HFA. It is this need that has motivated me to write Navigating the Social World.

Curricula designed specifically to teach social/emotional, abstract thinking, and behavior management skills to individuals with AS/HFA and related disorders are only now beginning to appear. Many of the ideas in this book have been adapted from teaching and counseling methods that have been in existence for years to meet the specific needs of these students. Other ideas in this text are new. At this point in time most, if not all, programs designed to help individuals with AS/HFA are, of necessity, at the cutting edge of the field. There simply has not been adequate time to develop and test a wide range of treatment approaches in order to ascertain which of them works best. In short, we are still in the research and development phase of treatment for this very complex and often puzzling group of disorders. This is certainly the case with Navigating the Social World. For this reason, any input that you, the reader, can give about your experiences using the programs would be greatly appreciated. I hope to use feedback from readers to improve the programs in the future and to provide a forum for sharing ideas. I strongly believe that the more we work together to share ideas and experiences, the better we will be able to help our students, clients, and loved ones with Asperger’s Syndrome, high-functioning autism and related disorders to live happier and more productive lives.

Jeanie McAfee
August, 2001

For further information or to send comments, please visit the following website: www.jeaniemcafee.com

ACKNOWLEDGEMENTS

While working on the book I had the privilege of spending three months studying with Dr. Tony Attwood in Brisbane, Australia. With his kind permission, I have included many of his ideas in this book.² It is difficult to adequately thank Dr. Attwood for so freely sharing his wealth of knowledge and expertise in the field of Asperger’s Syndrome and high functioning autism. Dr. Attwood’s passion for his work, and devotion to the individuals with autism spectrum disorders with whom he works, are an inspiration to the people who know him.

I also wish to thank Trevor Beasly, an autism advisory visiting teacher for the Queensland Department of Education in Australia, for so generously allowing me to follow him on his school rounds, and for showing me many of his tricks of the trade. Many thanks to Beth Saggers, also an advisory visiting teacher in Queensland, who shared her time and ideas as well. Carol Gray has been kind enough to allow me to use some of her excellent material on compliments and I have much appreciated her input. Her Social Stories and Comic Strip Conversations also have been invaluable tools in explaining how to interpret other people’s actions and words. Autism Partnership in Los Angeles provided me with an excellent foundation for a behaviorally based program for my daughter, Rachel, and other students like her, particularly in the areas of stress management, compliance, applied behavioral analysis and reinforcement techniques. Speech and language pathologists Rolleen Singlecarry and Cathy Hoey both gave me invaluable guidance when I first began searching for approaches to teaching social skills and pragmatics. Jane Germ lent her expertise in speech and language pathology to critiquing the book, and Wes Peterson and Diane Youtsey gave helpful feedback from the perspective of special education teachers.

My deep appreciation for the time they have taken out of their busy schedules to read and critique the manuscript goes to Dr. Adrianna Schuler, Dr. Robin Hanson, Dr. Linda Lotspeich, Dr. Marjorie Solomon, Dr. Edward Hallowell, and Dr. Fred Volkmar.

Rodger Stein, who is both friend and advisor, has taught me more than I ever thought I would want to know about applied behavioral therapy. He has been there throughout the writing of this book with honest feedback, support and humor, and has been one of my biggest cheerleaders. My daughter’s special education aide, Mary Foster, has worked side by side with me as I have written the book, trying out each new program and helping me immensely with her input. Her love for children, her great sense of humor, and her willingness to try new ideas have been a shining light over the last three years. Many thanks also to my dear friend, Belinda Chamness, for her help with the manuscript and for single-handedly holding down the fort while my family and I were in Australia. I deeply appreciate Bob and Gini McAfee for making it possible to study in Australia, and for their skill and patience in proof reading.

After years of reading acknowledgements devoted to spouses, I finally can say I understand why authors repeat the same words time after time. My long-suffering husband has washed more dishes, given more baths, put more kids in bed and cleaned up more dog, cat and baby poop than most men would ever dream of doing in their worst nightmares. And it goes on from there. He has created charts at one in the morning, retrieved lost programs while comforting his hysterical wife, and given his honest feedback in spite of the knowledge that he was taking his life in his hands in doing so. Through all of this he has put up with five grumpy females in the household, two of whom are bumping through the ups and downs of puberty, and another who is a three-year-old redhead with the personality of a tigress.

To Kim, Dana and Jody who have endured so much—thank you. You are wonderful.

Rachel, who loves lights of any kind, has faithfully lit a beautifully scented candle for me in our home office each time I sit down to work. She always says, “Mom, this is to help you write.” Rachel’s candles have become for me a symbol of the light inside each person on the autism spectrum. My hope is that this book will help them all shine brighter.

INTRODUCTION

This book was written primarily for people who live with or work with individuals who have Asperger’s Syndrome or high functioning autism (AS/HFA) and who have limited experience in providing programs for these children. In addition, the book also will be useful for those who work with individuals with related disorders such as pervasive development disorder-not otherwise specified (PDD-NOS), nonverbal learning disorder, and semantic pragmatic disorder.³ I have not intended to present a lengthy treatise on the history, diagnosis, or possible etiologies of these disorders. Rather, this book is offered to those professionals, paraprofessionals, and parents who have done some background reading and possibly have attended lectures and workshops on the subject of AS/HFA and related disorders, but who then face the challenge of how to apply what they have learned to real-life teaching situations. In other words, when the research is done, one still has to sit down with the child at some point and actually run a program. It is at this step that people usually stumble. This book is intended to help with that step.

Currently, the rate of diagnosis of AS/HFA is rising at such a rapid pace in most countries that it is outstripping the availability of quality programming for these individuals. Considering that the diagnosis of AS was first published in the DSM IV only in 1994, it is not surprising that the rate of diagnosis is increasing so quickly, as individuals who previously would have been mislabeled are now being identified. It also is not surprising that most research to date has focused on a) refining the diagnostic criteria, and b) searching for possible etiologies of AS/HFA. However, along with the increasing number of identified cases there has been a consequent rise in the demand for appropriate remediation programs. Because the diagnosis is so new, there has been little time to create and study treatment programs specifically designed for these higher-functioning students. In particular, programs designed to address social and pragmatics skills and the management of emotions and stress are few and far between. This shortage has put school districts in the difficult position of attempting to fulfill their mandate to provide appropriate individual educational plans without the availability of suitable programs for these students.

What information does exist for professionals, paraprofessionals, and parents who wish to learn more about how to help their children, students, clients, or patients with HFA or AS? Until very recently, most medical schools and degree programs in psychology and education have not been able to provide training in this area to their students. Many training institutions are still lagging behind in providing this information. Therefore, a majority of specialists in the field have gained their knowledge and experience through on-the-job training in the traditional mentor/apprentice model. In Australia, for example, the Queensland Department of Education recently put this model to excellent use in their autism Advisory Visiting Teacher (AVT) Program. Although the mentor/apprentice model can be very effective, there is a shortage of knowledgeable mentors in most places. There are some excellent books and papers on AS and HFA, but most, of necessity, focus on diagnosis and general approaches to treatment. Few, to date, present a “how to” approach that a novice can put to use without requiring significantly more extensive training. There also are many dedicated professionals who have begun to give much-needed workshops and lectures to share their knowledge. These training sessions are absolutely necessary. They provide not only a huge amount of information, but also access to the specialists presenting the information. However, this access is limited. Attendees often leave the conference or workshop with a head packed full of ideas, but without a clear idea of how to put the newly acquired information to work in the classroom or at home. This is the missing link that motivated the writing of Navigating the Social World.

In this book, the reader will find ideas and techniques from several different disciplines, including the fields of cognitive behavioral therapy, applied behavioral therapy, education, and occupational therapy, among others. Some of these techniques have existed for a long time, are widely used in a variety of applications, and essentially have become part of the public domain. Other techniques, developed more recently, were designed specifically for use with individuals with AS/HFA. I have credited the original sources for those techniques that fall into the latter category. Finally, many of the ideas in this book were inspired by my own beautiful daughter and a handful of other children with AS/HFA with whom I have had the great pleasure to work.

The lack of specific, hands-on programs designed to address the deficits in social, emotional, and organizational skills in students with AS/HFA is one of the major missing links in the area of Pervasive Developmental Disorders today. Navigating the Social World provides a number of user-friendly programs to address social and emotional delays in these students. While not intended to be an exhaustive work, it hopefully will serve as a springboard to help parents, teachers, and aids “get off the ground” in beginning their work with their student or child. Indeed, it is my hope that this book will not only get the reader off to a good start, but will stimulate more work in the area of programming for this very special group of individuals.

HOW TO USE THIS BOOK

Navigating the Social World was written for parents, professionals, and paraprofessionals who would like specific information on how to provide an intensive social-emotional skills program for their child, client, or student with Asperger’s Syndrome, high functioning autism (AS/HFA), or related disorders such as PDD-NOS, semantic-pragmatic disorder and nonverbal learning disorder. It has been written so that readers without extensive experience in this area can understand and apply the information contained in each program. However, it also may be helpful to those who already have significant experience working with this group of individuals by providing new program ideas or by offering different ways of approaching the deficits common to these disorders. In addition, adults with AS/HFA or related disorders who are looking for help in the areas of social and emotional skills may find this book useful, either as a general reference or as a curriculum resource to be used in a more structured setting with a mentor, counselor or other professional. It should be noted that some of the programs in the book (such as Program 7, Basic Conversational Responses) are most useful for students who need more basic instruction. Other programs (such as Program 18, Resolving Conflicts) are more applicable to older, very high functioning students. The majority of programs fall somewhere between these two categories, and most can easily be adapted to fit the needs and skill levels of the individual student.

Many of the general social skills and emotion management programs currently on the market present discreet, single lessons on isolated skills that are designed to be covered in one or two sessions per skill. While this approach may work for students who are not on the autism spectrum, it is becoming increasingly clear that brief, isolated teaching sessions such as this do not produce lasting, long-term gains in social and emotional management skills in individuals with AS/HFA.⁴ In response to this problem, the programs in this book are designed to provide in-depth teaching with reinforcement through repetition and skill building over a period of months to years. Each step should be practiced until the student has mastered it (i.e. can correctly perform that step 80-90% of the time) and then should be reviewed intermittently to ensure that the student retains the skills he has gained. Also, when being used with children and teens, the programs in this book are intended to be used in conjunction with a solid reinforcement system. (The subject of reinforcement is addressed in Section 4. There also are helpful hints regarding reinforcement techniques throughout the text.)

To encourage generalization (see glossary for definition) of learned skills to real-life situations, it is critical that the skills learned in school or clinic are reinforced consistently at home, and vice-versa. To get the most benefit from the programs in this book, parents, other caregivers, clinicians and teaching staff need to work together as a team. Each team member should be familiar with the programs on which the student is actively working, and should employ like techniques as much as possible. The team should meet on a regular basis to share information and ideas. Taking a flexible approach to implementing the programs (i.e. changing what does not work, capitalizing on what does work, and searching for ways to improve the program) will ensure the best possible results.

The basic principle underlying each of these programs is the tried and true teaching method of breaking tasks down into small, incremental steps (sometimes called “chunking”). Teachers have long known that this system works consistently for both neurotypical students and for those students with neurodevelopmental challenges. In the case of individuals with AS/HFA and other related developmental problems, it is critical to break into small steps those tasks that are challenging to them. These students do not learn by simple observation or by “osmosis,” particularly if the task they are learning involves social-pragmatic skills, the understanding and management of emotions, or organizational skills. Many of these children have experienced repeated failure when presented with more information than they can process in the realm of social/emotional skills. This accumulation of failures is not only damaging to their self-esteem, but also can cause them to withdraw from further attempts to understand information presented to them in these areas. Chunking the material into small, manageable parts allows them to succeed, thus improving their self-esteem and their willingness to tackle increasingly complex social and emotional problems.

In general, the programs within each section have been designed to be taught in the order in which they are presented. However, the user may choose to start with any section or use only selected programs for individual students. Within a program, each step is built upon the skills learned in previous steps. This can be adapted to the needs of the individual student by starting the program at a later step if the student clearly has already acquired the skills covered in preceding steps.

Most of the programs in this book can be used either in individual work with a single student or in a small group setting. However, in many cases it will be most effective and efficient in the long run to spend some time at the beginning of a program working one-on-one with the student. This provides an opportunity to assess his skill levels and assure that he understands the basic concepts to be covered, before having him work in a group.

When working with students on the autism spectrum, it is important to teach them not only those skills that will help them fit in with their current peer group, but also to focus on skills and habits they will need over a lifetime. Keep in mind that once these students have learned to do something one way, it may be very difficult for them to change the way they do it in the future. For example, a student who learns the jargon that his peers use at age nine may still be using that same jargon at age nineteen if he is not helped to learn more age-appropriate language as he gets older. Likewise, a sixteen year-old student may continue to use the same methods of dealing with anger or frustration that were deemed “normal for his age” when he was five years old, but are socially unacceptable for a teenager. Therefore, it is important to plan for the future when teaching social/emotional skills to students with AS/HFA. Keep in mind that it invariably takes much longer for these students to acquire such skills. If the teacher is not careful, the student may end up learning skills that are no longer age-appropriate by the time he finally masters them. In fact, particularly when working with students in mid- to late adolescence, it is wise to make sure that the student’s program presents language, manners, and behaviors that will be appropriate when he is an adult.

Appendices B, C and D contain student handouts, templates, and program tracking forms that may be photocopied for individual use by parents or professionals. Appendix A provides a list of additional resources that may be helpful to the reader. Appendix E is a glossary of terms found in this book and in the field of autism in general.

A note on videotaping: Many programs in this book use videotapes of the student as he practices various skills. This allows him to see specifically what he is doing well and gives the teacher a chance to point out those elements of the skill that need more work. Although students may initially act silly or shy when being videotaped, most of them will adapt to the process quite rapidly if the taping is treated in a matter of fact way. Note that giving the student an opportunity to videotape you and then discuss your performance as well as his when reviewing the tape will help the student feel less “singled-out.” It also will give you the opportunity to model positive ways of self-correction and acceptance of feedback.

Note: For the sake of simplicity and clarity the term “teacher” is used in this book to mean anyone who works with, lives with, instructs, mentors, or cares for an individual with AS/HFA. This includes parents and professionals. Likewise, the term “student” refers to any individual with AS/HFA or a related condition who participates in the learning experiences described in this book. Having said that, I immediately am compelled to apologize for this artificial split between teacher and student. In truth, more often than not it is the person with AS/HFA who has more to teach, and the rest of us who have the most to learn.

(To protect the privacy of the students mentioned in this book, their names and identities have been changed.)

BRIEF OVERVIEW OF ASPERGER’S SYNDROME AND HIGH FUNCTIONING AUTISM

What are Asperger’s Syndrome and high functioning autism (AS/HFA)?

Asperger’s Syndrome and high functioning autism are two terms that commonly are used to refer to higher-functioning autism, a pervasive, neurodevelopmental disorder of the brain that affects a number of abilities. These include the abilities to communicate, make and keep friends, carry out everyday social interactions, and deal with change. People with these disorders typically have repetitive behaviors and intense or unusual interests in certain subjects. Also, they often have problems with abstract thinking, motor and coordination skills, and recognizing and coping with emotions. Many are plagued with atypical sensitivity to sensory input (i.e. uncomfortable or even painful responses to everyday sounds, lighting, touch, smells, tastes, or textures of certain foods).

It is crucial to recognize that there is no single blueprint for AS/HFA. Each person with one of these conditions is a unique individual, and will have varying degrees of function or dysfunction in the areas listed above. For example, one person with AS/HFA may have extreme problems dealing with change, repetitive behaviors, and moderate difficulties with nonverbal communication. Another person with the same diagnosis may be able to tolerate change fairly well, but may ask frequent, repetitive questions and have severe problems communicating in a socially appropriate way. A common pitfall for people newly acquainted with the diagnosis is to employ a definition of AS/HFA that is stereotyped or too narrow in scope, and to rule out the diagnosis if the individual in question does not fit every aspect of this definition to equal degree. Another common mistake is the use of the criteria for classic, or Kanner’s, autism when evaluating a person for possible AS/HFA. By these criteria, for example, if a person has superficially normal speech and language, and average cognitive abilities, they may be disqualified for receiving services even though they do meet all the criteria for Asperger’s Syndrome.

Are Asperger’s Syndrome and high functioning autism the same or different?

A debate currently exists in the field of autism about whether Asperger’s Syndrome and high functioning autism are two different entities or are indeed one and the same thing. Good arguments exist on either side of this debate, and although the question is an interesting one, the answer simply is not yet available. Perhaps more importantly, both terms describe conditions that are more alike than different. For this reason, and because the treatment approach to both is the same for the purposes of this book, the two terms are used interchangeably herein, and they are referred to together as Asperger’s Syndrome/high functioning autism, or “AS/HFA.”

A Summary of Diagnostic Criteria

As it is much easier to find a clear definition of Asperger’s Syndrome than of HFA, the diagnostic criteria for Asperger’s Syndrome will be used to cover both terms. However, even within the diagnosis of Asperger’s Syndrome, the diagnostic criteria differ somewhat depending on the source. Two of the most widely used sets of diagnostic criteria for AS are those listed in the World Health Organization’s ICD 10⁵ and the American Psychiatric Association’s DSM IV.⁶ Two other sets of diagnostic criteria specific to AS include those by Gillberg and Gillberg⁷ and by Szatmari, Bremner and Nagy.⁸ All four of these sources list the following key criteria: 1) problems with developing normal peer relationships, 2) impaired ability to recognize or use appropriate nonverbal communication, and 3) impairments in social interaction, such as problems recognizing and responding to other people’s emotions, inappropriate social and emotional behavior, and failure to seek out interaction with peers. With the exception of the Szatmari group, all sources also mention remarkably restricted and intense interests in certain subjects or activities, as well as stereotyped, repetitive routines. There is less agreement on whether or not the syndrome includes problems with language development. Gillberg and Gillberg include delayed speech and language development as present in some individuals with AS, whereas the DSM IV and the ICD 10 require that there be no significant general delay in language development. Also, both the Gillberg and Szatmari criteria mention certain oddities of speech and language that may be present, such as pedantic speech, odd prosody, and comprehension problems (including literal, concrete interpretation of metaphorical speech). Finally, both the DSM IV and the ICD 10 require that there be no significant delay in cognitive development in order for the diagnosis of AS to apply.

Asperger’s Syndrome and High functioning Autism as Part of a Continuum

It is now widely accepted that autism is not a single entity, but is instead a spectrum of disorders. The features that are present throughout the spectrum include problems with communication and social interaction, and narrow, repetitive patterns of interests, activities, and behavior. At one end of this spectrum are individuals with classic autism, or “Kanner’s Syndrome” (based on the work of Leo Kanner, published in 1943). These individuals have more severe problems, including significant cognitive and speech delays. At the other end are those individuals with Asperger’s Syndrome (first described in a doctoral thesis by Hans Asperger in 1944), a diagnosis that implies near normal to above-average cognitive abilities and at least superficially normal expressive and receptive language abilities. Some workers in the field use the term “high functioning autism” for those individuals who fit the criteria for classic autism as infants and young children, but later develop some basic social skills, speech that includes complex sentence structure, and intelligence within the normal range.⁹

Pervasive Developmental Disorders

The DSM IV uses “Pervasive Developmental Disorder” (PDD) as an umbrella category under which there are five subcategories. These include Autistic Disorder (i.e., classic autism) and Asperger’s Disorder (or Asperger’s Syndrome) as described above. Also included are two rare neurodevelopmental disorders, Rett’s Disorder and Childhood Disintegrative Disorder, which share some of the features of autistic disorders. Finally, a fifth subcategory, called Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), describes cases in which the child clearly appears to have a pervasive developmental disorder but does not fit neatly into one of the other four subcategories.

Possible Causes of AS/HFA

While it is now clear that autistic disorders are neurologically based, the exact cause or causes are as yet unknown. It is widely accepted that genetic factors play a definite role in the etiology of autism, although which genes are involved and the exact mode of transmission are still under investigation. One theory is that environmental factors such as exposure to infection or a potentially toxic substance may trigger the activation of the errant gene or genes. (For example, the question of whether some cases of autism may be vaccine-induced is a subject that is currently under intense debate.) An old theory introduced by Bettelheim¹⁰ during the heyday of psychoanalysis in the 1960’s, blamed the development of autism on emotionally detached “refrigerator mothers.” While this theory has been clearly shown to be wrong, remnants of it unfortunately still emerge from time to time, leaving parents, particularly mothers, to carry the burden of blame for their child’s autism.

Other Issues

Theory of Mind

“Theory of mind” is a phrase which means the ability to recognize other people’s feelings, thoughts, beliefs, and intentions and to respond to the other person accordingly. All individuals with AS/HFA are lacking in this skill to varying degrees. In practical terms, this inability to “mind-read”¹¹ means that they have problems understanding why people feel, think, and do the things they do. As a result, they are poor at predicting how another person might respond to them and what the other person is likely to do next in a given situation. Some researchers believe that this poor ability to mind read is the central deficit in autism, and that it is the cause of the severe problems with social interactions found in individuals with AS/HFA.¹²

Executive Functioning

Many people with AS/HFA have deficits in executive functioning. “Executive functioning” is a technical term that refers to the ability to plan and organize tasks, monitor one’s own performance, inhibit inappropriate responses, utilize feedback, and suppress distracting stimuli. Deficits in executive functioning can cause major difficulties in accomplishing school or work assignments and self-help tasks.

Abstract Thinking

The ability to understand abstract concepts is compromised in a large percentage of people with AS/HFA. These individuals often think in very concrete terms, and while they may excel at remembering the minutest details about a subject that interests them, they often fail to understand abstract or metaphorical concepts. Parents often report that their child takes figures of speech literally (for example watching out the window for small pets falling from the sky after someone remarks that it is “raining cats and dogs”). Likewise, their inability to grasp abstract concepts may make it very difficult for them to do school assignments that require them to come up with the main idea of a story or to compare and contrast two events.

Recognizing and Coping with Emotions

To varying degrees, many people with AS/HFA have trouble with identifying, quantifying, expressing, and controlling their emotions. Some may appear on the surface to have few emotions because they don’t show those emotions in the same way a neurotypical person might show them. In contrast, others may express a higher degree of emotion than they actually feel. For example, annoyance might be expressed as fury, or mildly happy might be expressed as overjoyed.

Stress

As a result of the pervasive nature of their deficits, many individuals with AS/HFA are under a great deal of stress during most of their waking hours. In light of their struggle to understand even the most elementary social and communication skills, to cope with problems with planning and organizing, and to deal with major difficulties understanding emotions and abstract concepts, it is easy to appreciate why many of these individuals are chronically stressed. In fact, it is truly remarkable when someone with AS/HFA does not suffer from chronic, high-level stress. It is also easy to understand why children with AS/HFA sometimes develop problem behaviors (such as acting out) in response to that stress.

INTRODUCTION

Recognizing and Coping with One’s Own Emotions

The world of emotions can be puzzling and often overwhelming to individuals with AS/HFA. They often have difficulties recognizing and labeling their own emotions effectively. Furthermore, they may not understand that there are varying degrees of feeling within a particular emotion. They may appear to be overly emotional because they express their feelings in an all-on or all-off fashion; the slightest irritation comes out as rage and the mildest contentment comes out as elation. On the other hand, they may appear to be uncaring or lacking in emotion because they fail to express their feelings appropriately. Because emotions are not logical and do not lend themselves to straightforward, consistent definitions and rules, people with AS/HFA may find feelings extremely confusing and even frightening. This fear can lead them to over-react or under-react to their feelings. For example, a child who one moment is overjoyed to receive a long-wished-for present, may in the next instant dissolve into tears because her own feelings of happiness frightened and overwhelmed her. With such hurdles to face, it is not surprising that people with AS/HFA often find it very difficult indeed to understand and cope with emotions.

Stress is a feeling with which most people with AS/HFA are all too familiar. The difficulties that many of them face on a daily basis trying to communicate effectively, fit in socially, and navigate their own and other people’s emotions are enough to cause an extraordinary degree of stress in many of these individuals. This stress can take a huge toll on the individual’s emotional and physical health and can wreak havoc on his ability to learn, play, and enjoy life. It can also take a huge secondary toll on those who live and work with that individual. For these reasons, it is critical that stress management be given top priority when planning programs for people with AS/HFA.

The goals of this section are to 1) teach students to better recognize, label, and quantify their own feelings, 2) help them learn positive ways of dealing with their emotions, and 3) provide them with a reliable set of tools for coping with stress.¹³

PROGRAM 1

RECOGNIZING A SIMPLE EMOTION; REDIRECTING NEGATIVE THOUGHTS TO POSITIVE THOUGHTS

INTRODUCTION

Many people with AS/HFA are much more comfortable in the cut-and-dried world of facts and logic than they are in the nebulous world of emotions. There are few rules to aid one in defining emotions, and words invariably fall miserably short of describing all of the fine shades and subtleties within a particular emotion. It is no small wonder that these individuals, who rely so heavily on rules and definitions to understand the world, may find that emotions are simply too difficult to comprehend, and that it is much easier to ignore the subject altogether. They may not tell loved ones “I love you,”or explain when they are feeling confused, afraid, sad, or lonely. Unfortunately, this may lead others to think that the person with AS/HFA lacks those feelings. However, in most cases individuals with AS/HFA have the same range and depth of feelings as do the rest of us and would willingly share their emotions if they understood them better. This program introduces the concept of identifying one’s own feelings, starting with the emotion of happiness. (Happiness is presented first because it is a simple and positive emotion.) In addition, the student uses a“pleasures”book and cue cards as a set of visual cues to trigger happier thoughts or direct him to mood-lifting activities.

GOALS

The goals of this program are to:

1. Introduce the concept of identifying and labeling one’s own emotions, starting with the simple emotion of happiness.
2. Introduce the concept of redirecting negative thoughts to positive thoughts as a way to cheer oneself up.
3. Introduce the concept of directing oneself to a calming or mood-lifting activity when stressed.

INSTRUCTIONS

Step One: Recognizing happy feelings.

First, help the student to create a scrapbook (or“Pleasures Book”) by collecting and entering into the book photos, mementos and diary entries of events or things that make her happy. Items for the scrapbook may vary from written descriptions of happy events to the box label of a favorite game, photos of a special friend, or the lyrics of a special song. More entries can be added to the book at any time.

Step Two: Redirecting negative thoughts to positive thoughts.

Discuss with the student that a common way people deal with sadness or loneliness is to redirect their thinking to something that makes them happy. Then encourage her to use her Pleasures Book to help her redirect her own thoughts when she feels“down.”Make sure the book is accessible both at home and at school, and cue her to look through the book at times when she is feeling unhappy. Sometimes, just looking at the entries in her book may be enough to lift her mood. At other times, the entries may cue her to an activity that will help her feel better (such as playing a computer game, taking a warm bath, listening to her favorite music, or going for a walk).

Step Three: Using favorite activities to calm down.

The student and teacher may wish to create cue cards taken from the items in her Pleasures Book. The cue cards can be laminated and carried around in the student’s pocket so that she can refer to them for redirection when she is feeling down. Certain cue cards may also be used to unobtrusively communicate to the teacher that the student needs a break. A technique that has been used successfully in many classrooms is “break time”: the student hands the teacher a cue card to indicate that she is stressed and is going to a pre-arranged, alternate place for a few minutes until she calms down. For example, the student gives the teacher one of her cue cards showing a computer to indicate that she is stressed and is going to work in the computer lab for a limited time. (Note: This strategy is intended for stress management and is not intended as a means of avoiding non-preferred activities. See page 38 for more information on break time.)

PROGRAM 2

RECOGNIZING AND LABELING MORE EMOTIONS; LINKING NONVERBAL CLUES TO EMOTIONS

INTRODUCTION

Paul was five years old before he learned to smile. His parents had been told that Paul had atypical attention deficit disorder, but they suspected there was more to it than that. Indeed, they later found out that their son had Asperger’s Syndrome. His face was a blank slate most of the time, except when he was angry. He threw temper tantrums several times a day that the neighbors two blocks away could hear. Paul did not smile; his face and body posture rarely showed worry, sadness, pride, or any of the other emotions that five-year-old boys typically feel, even when there was more than enough reason for him to have such feelings. One day his mother grew weary of waiting for her boy to smile and she took things into her own hands. She sat Paul down and showed him pictures of people with smiles, and others with worried, sad, proud, and silly expressions. Then she made the same expressions with her own face and asked her son to copy her expressions. When he had trouble, she held up a mirror for him and pointed out how he needed to change the position of his lips or eyebrows, or the way he held his body. They did the same thing day after day until Paul could model, without help, the emotions his mother asked him to show her. As Paul learned how to do this, he also learned the words for the emotions he had been feeling all along. Little by little, he began to tell people how he felt. But the best part of all, his mother thought, was that now he smiled.