Growing Up on the Spectrum

by Lynn Kern Koegel

  Frequently Asked Questions

  My son refuses to go out with us when we’re visiting friends or relatives and rarely goes out by himself. My husband says to leave him alone, that he’s old enough now to decide for himself and he seems perfectly happy at home by himself. And it’s true he doesn’t exactly seem depressed—he’s not crying or talking about being unhappy. He’s perfectly cheerful, but his lack of interest in doing anything other than going to school and coming right back home worries me. Do you think I should take some kind of action or should I leave him alone because, as my husband says, he seems happy enough?

  If your child isn’t doing anything outside of the home except going to school, he’s differing drastically from his peers. My concern is that he isn’t learning how to socialize and isn’t developing friendships. Because he enjoys being at home, you may want to start by having some of his school buddies come over to your home to engage in some activities that your son likes. If it turns out that he gets along perfectly well with his peers but just likes being at home, your problems are solved. But if he isn’t able to get along with his peers, I would worry that hanging around home all the time is just putting him further behind socially. In that case, you’ll want to develop a comprehensive program with the school and carry over social activities outside of school. Remember, learning to get along with peers will help him with work, friendships, and potential relationships.

  You said we should do something about compulsive behaviors if they interfere with normal life, but what if they don’t? My son does have some lining-up sorts of behaviors, and has to brush his teeth and wash his face in the same order and in the same way every morning and night, but he only does these things when he’s alone. Do I have to do anything about them?

  If they aren’t a problem for him or anyone else who interacts with him (or who might in the future), then you can probably leave these behaviors alone. But having said that, I believe you should keep an eye on them. Little problems can turn into bigger ones, and if they appear to be getting worse over time, you should definitely be concerned and start intervention.

  My daughter’s very anxious about how other people regard her when she’s out in public. Just the other day, she thought a waitress “didn’t like her” because of the way she ordered her dinner. (She does speak in an unusual way, but I don’t think the waitress was bothered by it—she was just brusque because she was in a rush.) These fears can ruin an outing. She’ll suddenly get very nervous and quiet and whisper to me that someone at the next table is staring at her peculiarly or something like that. She’s been teased a lot at school so maybe that has something to do with it. Do you have any suggestions for handling this? I’m worried it’s really affecting her willingness to go out socially.

  If your daughter is reacting to nonexistent criticism, you’ll need to teach her a different way of thinking about others’ feelings. For example, when she orders, you may want to prompt her to consider that the waitress may have thought how nice it was that she ordered so quickly. Or if she thinks someone is whispering about her, you may want to teach her that they’re probably talking about how cute she is. Changing these thoughts may help her to learn that other people’s motives aren’t always malevolent. However, if people are making fun of her, you may first need to work on the areas that are drawing attention to her. For example, if she speaks in an unusual way, you may want to work on prosody (see Section II, Chapter 2 for how to do that). Second, encourage her to talk to people who can help. If it’s happening at school, she can talk with a counselor or special education staff member who might be able to help.

  Third, teach her to deal with it differently. For example, if the waitress is short with her, have her ask if everything is OK. If someone is laughing, have her ask “What’s so funny?” and teach her at times just to ignore it and self-instruct with a “Who cares?” attitude. Having lots of strategies in her repertoire should make these situations easier.

  An Afterword for Educators by Robert L. Koegel, PhD

  You’ll catch just about any father of an adolescent saying, “It seems like just yesterday that I was walking around the delivery room …” and time may blur even faster for parents of kids on the spectrum who have every minute filled to the brim with therapies, playdates, parent-teacher conferences, IEPs, priming, and the like. In fact, it’s hard to believe that Andrew, who seemingly yesterday was nonverbal and struggling with communication, is now contributing eloquent essays with thought-provoking honesty to this book.

  Kids do grow up so quickly. We can see that the epidemic of kids diagnosed with autism spectrum disorders is now approaching adolescence. And as a society, we’re not prepared. As the peak of the tsunami begins to hit, parents are realizing that while things are most certainly better for young children on the spectrum and intensive early intervention has improved immensely, the conditions for adolescents and young adults still leave a lot to be desired. Because of the gap between when a research study comes out and when we see it implemented in the real world, books that translate research to practice are essential. Lynn and Claire have written just such a book, as they describe the pivotal response approach to intervention in a practical and user-friendly way. These scientifically sound techniques, where individuals’ motivations are considered at the heart of every activity, result in extraordinarily widespread and generalized changes that happen very rapidly.

  Fortunately, this approach does not rely on punishment, but instead relies on specific intrinsic motivations and desires in order to produce huge improvements. Contrast this new Pivotal Response approach described by Lynn and Claire with approaches used in the recent past (and unfortunately even in some places during the present time), where individuals are tied to their beds in four-point restraint and given high-voltage electric shocks and other forms of painful or humiliating punishments. Many of us have seen reports of these horrendous procedures described in documentaries and news reports on television. But it is one thing to read or hear about incidents like these, and it is another thing to live them. Therapists and parents alike were destined for grief and anguish knowing that while the procedures worked, albeit short term, they offered no dignity or self-respect for the person on the spectrum.

  So again, while older approaches to eliminating behaviors such as aggression, constant arguing, or stereotypic self-stimulatory behavior may have been met with the dreadful fate of a painful punishment, this newer approach examines the intrinsic motivation for the behavior. Armed with that knowledge, intervention can be designed that replaces the maladaptive behavior (such as arguing) with an appropriate behavior that will accomplish the same function—a long-lasting fix that is by far less painful and infinitely more respectful of the individual undergoing the intervention. In short, the scientifically based improvements described by Lynn and Claire in this book make a remarkable difference in the quality of life and happiness of not only people with autism, but also everyone around them.

  However, the authors do not stop there. Once they have tackled motivation, so that the individuals on the spectrum want to work hard to improve and make the effort to interact socially, Claire and Lynn go on to show that it is possible for the adolescent or young adult with autism or Asperger’s to take a large self-regulatory role in his or her own road to improvement. This makes a huge difference in the person’s self-dignity, independence, and autonomy. When the goal of the individual on the spectrum is dating, a relationship, and marriage, he can be even more motivated to take a major role in his own intervention. We have seen many young adults who have recognized that they need to take an active role in learning the thousands of social nuances that go along with social conversation. They begin to actively work with their intervention providers and family members in order to change entrenched clusters of behaviors, eliminating the need to address each individual behavior alone by relying on an external intervention provider. At that point, when the person on the spectrum begins to take charge of his life, we can sort of take a backseat a
nd watch the miracle of this person’s life unfold before our eyes. Such changes are ones that are likely to last and be truly meaningful.

  Thus, the heart of this book relies on building the critical pivotal areas of self-motivation and self-confidence to improve the lives of individuals on the spectrum. And Lynn and Claire show how such an approach gives dignity and respect to the individuals, treating them as people first and not as people with disabilities.

  When one reads the descriptions in this book, it is obvious that most individuals with autism and Asperger’s syndrome initially (without intervention) appear very unmotivated to change their behavior due to a seeming learned helplessness. That is, they seem to think they cannot do things that they in fact are actually capable of doing. Further, while they seem to desperately want friends, they appear to lack confidence in their ability to make friends, and therefore put their effort into avoiding the very social interactions they so desperately require. But once self-motivation is addressed as a pivotal core area for intervention, quick and long-lasting improvements take place with a natural and generalized result.

  This book also recognizes that people on the spectrum sometimes have extreme attentional problems. They may attend to too few cues, and to incorrect cues, missing critical social information necessary for positive interactions that are critical for social competence. Lynn and Claire describe how motivation to attend to social cues can rapidly result in dramatic intervention gains. Joint attention to stimuli, with shared emotions regarding those stimuli, produces such a rapid and widespread improvement that one suspects that critical neurological changes may be occurring in the remediation process. This is a major breakthrough. Although Lynn and Claire do not say it themselves, their work suggests that, at least in some cases, it may not be wrong to be thinking in terms such as “to cure” or at least “to overcome” the symptoms. Lynn and Claire describe the approach that seems to work at the very basic heart of the disability.

  It also is very important to note that in many cases Lynn and Claire report that the individuals receiving treatment improved very rapidly, almost instantaneously. This suggests that the desired behaviors may have been in their repertoire all along, and what was needed was not to teach them from scratch, but rather to find a way to motivate the performance of behaviors. For example, instead of teaching a person how to play a game, the authors suggest that it is important to show the person how to have fun with the game, and then the individual will rapidly motivate herself to acquire the necessary skills to play the game.

  Thus, it appears that the individuals with Asperger’s and autism disorders may have a learned helplessness, and may actively avoid the responses that are necessary for their long-term happiness. The authors show in this book that learned helplessness is a pivotal area, and that once remediated, extremely rapid and natural improvements occur, resulting in a greatly improved quality of life for all of the individuals involved. Lynn and Claire show not only how to make improvements in these people’s lives, but also how it is possible for them to achieve happy and fulfilling lives as adults. This is critically important for all concerned: the individuals with the disability, their friends and families, and for all of the society members with whom they interact. Happiness is not a small goal, and Lynn and Claire have taken on the challenge to show that there is reason for all of us to have hope!

  Resources

  If this book left you with questions, concerns, a desire for more information, and/or a motivation to plunge into making positive changes for individuals on the spectrum, then we want to help you continue on your journey. Here are some suggestions for where you can go from here.

  Our Clinic and Research Facilities

  The Koegel Autism Center at the University of California, Santa Barbara (UCSB), keeps expanding exponentially. We continue to research Pivotal Response Teaching methods, which have been shown to result in widespread positive improvements on a variety of symptoms of autism, and to improve the intervention available to children and adults on the spectrum. We also have an annual PRT conference at UCSB that focuses on the latest and greatest research findings. In addition to the Autism Center, we now have a Center for Excellence in Asperger’s Studies. This was started with funding from Eli and Edythe L. Broad. The Eli and Edythe L. Broad Center for Asperger Research is conducting research and intervention with the purpose of developing a model that can be disseminated nationally, and is moving toward the long-term goal of becoming the largest and most comprehensive clearinghouse in the world on intervention for Asperger’s syndrome. Information on this new center, as well as the UCSB Autism Center, can be found at www.education.ucsb.edu/autism.

  Manuals and Books

  The following manuals can be ordered from our Web site (www.education.ucsb.edu/autism):

  How to Teach Pivotal Behaviors to Children with Autism

  This manual addresses the subject of pivotal behaviors, such as motivation, that produce widespread positive effects on many other behaviors, including overall emotional responses and learning, and decreasing disruptive behavior. It’s also available in Spanish.

  Facilitating Play Dates for Children with Autism and Typically Developing Peers in Natural Settings

  This manual is designed to help teach those who work with children with autism how to facilitate play dates with typically developing peers. It outlines simple steps for setting up play dates with peers and promoting positive interactions during play dates. It’s easy for families and professionals to use in home and community settings.

  Teaching First Words to Children with Autism and Communication Delays Using Pivotal Response Training

  Even though this book focuses on teens and young adults, it’s never too late to give first words a try if your older or adult child is nonverbal. This manual describes Pivotal Response Teaching procedures as they apply to children with autism or related severe communication delays learning their first words. The manual focuses specifically on the pivotal area of motivation in children as they learn their first words and how to use them spontaneously and independently.

  Understanding Why Problem Behaviors Occur: A Guide for Assisting Parents in Assessing Causes of Behavior and Designing Treatment Plans

  This manual gives details on how to perform a functional analysis. It will help you recognize the function of the behavior that an individual is displaying, and use that information to replace the behavior with one that is appropriate.

  Increasing Success in School through Priming

  This book was originally written for younger children, but the same procedures work with older children on the spectrum who are included in regular education classrooms. It gives more details on the priming procedures described in this book.

  How to Teach Self-Management to People with Severe Disabilities

  Even though the book includes the words severe disabilities in the title, the self-management works with mild and moderate disabilities, too. This manual is also available in Spanish.

  Procedures for Working with Paraprofessionals to Improve Socialization for Children with Autism

  This manual may be interesting to those who want to expand on the existing in-home services for families by creating a program to increase the social opportunities for children with autism or related disabilities in inclusive settings, including afterschool and summer camp programs. It outlines the recruitment and training of paraprofessionals to assist with social interventions, so that children with autism or related disabilities can gain access and successfully integrate into community settings and programs.

  Overcoming Autism. L. Koegel and C. LaZebnik (Viking, 2004)

  If this book was helpful, you may want to read our first book, Overcoming Autism. We focus more on younger kids in that book, but a lot of the tips are useful with older children who still have some remnant behaviors that need to be addressed. Browse through it at the bookstore and see if anything is helpful.

  Pivotal Response Treatments. R. L. Koegel and L. K. Koegel (Paul H. Brooke
s Publishing Co., 2006)

  If you like more scientific reading with lots of references, you might want to pick up a copy of Pivotal Response Treatments. This is often used as a college textbook and includes much of the scientific background and studies that went into developing the procedures described in this book.

  Journals

  While journals may have jargon and just too many details, they are still a great way to get the latest information and groundbreaking studies. There are so many wonderful journals out there, but here are a few that are especially helpful for individuals on the spectrum.

  Focus on Autism and Other Developmental Disabilities

  PRO-ED

  8700 Shoal Creek Blvd.

  Austin, TX 78757-6897

  Web site: www.proedinc.com

  Journal of Autism and Developmental Disorders

  Subscriptions/articles through Kluwer Academic Publishers:

  Journals Department

  101 Philip Dr.

  Assinippi Park

  Norwell, MA 02061

  Email: kluwer@wkap.com

  Journal of Positive Behavior Interventions

  Subscriptions/articles through PRO-ED

  8700 Shoal Creek Blvd.

  Austin, TX 78757-6897

  Web site: www.proedinc.com

  Research and Practice for Persons with Severe Disabilities Subscription/articles through the Association for Persons with Severe Handicaps (TASH) 29 W. Susquehanna Ave., Suite 210 Baltimore, MD 21204

  Organizations

  The following organizations may help you. Many have annual conferences. If you join them, you can get their regular newsletters. Some of them have journals, too.

  • Association for Behavior Analysis (ABA)—www.abainternational.org

  • Autism Society of America (ASA)—www.autism-society.orgASA also has local chapters in many cities

  • The Association for Persons with Severe Handicaps (TASH)—www.tash.org

  • Association for Positive Behavioral Support (APBS)—www.APBS.org