A Parent's Guide to Asperger Syndrome and High-Functioning Autism

The stated goal of A Parent's Guide is to help parents give their children with Asperger Syndrome or High-Functioning Autism (AS/HFA) the best chance possible for a full and happy life.  This is an ambitious goal. However, the authors have succeeded in translating this goal into concrete terms and strategies that address the gifts and challenges that children of all ages with AS/HFA face.  This is a book that you will go back to again and again as your child ages and matures.  The theme throughout the book --  capitalizing on your child's strengths -- remains the same, but the situations children and parents have to address, as well as the strategies for capitalizing on those strengths will change as children, their peers, and life expectations evolve.  The book is written with humor and care for the children and parents who face these issues on a daily basis. But it is also realistic and honest -- never downplaying the difficulties with which  parents and children must cope.

For those readers who are parents of young children with AS/HFA, it will at times feel overwhelming to read about the challenges yet to come.  However, it is also very enlightening and the ability to plan ahead and watch for pitfalls is a great benefit.  The authors are clear in stating that most of their information on adolescents and adults with AS/HFA is based on observations of people who were diagnosed later in childhood than is now possible. They cannot predict how early diagnosis and intervention will impact the challenges and needs of children with AS/HFA.

The first four chapters constitute part one of the book and are focused on understanding Asperger Syndrome and High-Functioning Autism. This section is replete with vignettes of children and teens who exhibit classic characteristics of AS/HFA.  The explanations here are clear and useful, but perhaps the most helpful information is a sidebar that delineates the differences between autism, PDD, PDD-NOS, high-functioning autism and Asperger Syndrome.  Diagnosis of these conditions seems more like an art than a science and the authors note that the primary distinction between AS and HFA lies within children's behavior before the age of three.  Thus children with labels of AS and HFA will function similarly and face similar challenges.  The challenges are identified as social interaction, communication and unusual interests and behaviors.   The task of parents and educators is to tap into children's individual strengths and use them to overcome the challenges that children with AS/HFA face.  Examples and strategies for doing this are provided in the second part of the book.

The rest of the chapters in section one are devoted to covering the process of diagnosis, causes of autism spectrum disorders and possible treatments.  For parents who have been at this for a while, much of this information will be redundant.  Perhaps the biggest criticism of this book is that it tries to be all things to all parents of children with AS/HFA.  Experienced parents who have done their research can probably just skim this section.  But don't skip it completely. There is an interesting sidebar about possible misdiagnoses and a very clear presentation of the DSM criteria for autistic spectrum disorder.  For parents who have not yet taken their children for a formal diagnosis, there is a good discussion of the assessment process and how to tell if you are getting the expert help you need for a good diagnosis.  Not all diagnostic assessments are equally accurate, revealing or useful.

The chapter on treatments is also for the novice..  For parents who have been navigating the AS/HFA sea for a while, this section will not add anything to their research and experience with different treatment modalities.  For those who are new to this, it is a concise and readable introduction and review of popular methodologies which will, nonetheless, need to be supplemented with further research.

The real meat of the book, and what makes this book so unique and valuable, is the second part -- chapters five through nine.  It is here that the strategies become concrete and specific with plenty of examples.  Chapter five is a discussion of the guiding principle of the book -- channeling your child's strengths.  According to the authors, there are three good reasons to do this -- to build up areas of weakness, to build self-esteem in the child and to make life easier for everyone.  This quote summarizes the message of the whole book - "Building on strengths, having creative strategies, produces more solutions than concentrating on attacking your child's weaknesses."  This is a good policy for all special needs kids, since many parents and providers tend to get hung up on what kids cannot do as opposed to what they can do well. As a starting point, the chapter reviews six strengths typical of children with AS/HFA: remarkable memory, superior academic skills, visual thinking, recognizing order and following rules, passion and conviction, and, finally, comfort and compatibility with adults.  However, parents should assess their own children to find additional individual strengths.

The next three chapters focus on the home, school and social world respectively.  The chapter on home life explains the importance of consistency and provides strategies for difficult times of the day, breaks, routines, chores and homework.  This chapter also addresses the issues of a healthy family attitude and how to deal with sibling matters.   However, the great contribution of this chapter is the explanation of and examples pertaining to functional behavioral analysis.  This is a method for understanding and addressing challenging behavior.  It is a cognitive approach (for the parents) with clear, simple steps.  Success will depend on how well you know your child and how reflective and creative you can be in determining the reasons behind his or her behavior and providing your child with better ways of communicating those needs.

The chapter on school life starts with a description of how AS/HFA issues are different from learning disabilities and notes that most teachers are not trained to recognize and handle these issues.  There is an introduction to special education law and disability law and a discussion of the pros and cons of different educational placements. While all this information is useful, the real strength of the chapter is in the section on typical school challenges and ideas for working them out.  It is not just the solutions themselves that are helpful, but the demonstrations of how to apply kids' strengths to meet the challenges presented.

The one thing that is conspicuously absent from the discussion of school life is the notion of special school classes for gifted children.  While this book does not address how to advocate for one's child in school, and should not since this is at least a book length subject in itself, it is worth noting that the special gifts of children with AS/HFA may qualify them for gifted status in the school system.  Qualifying for and attending such classes should bolster a child's self-esteem, raise their regard in the eyes of others and keep them interested in and challenged at school.  All goals specifically laid out in this book.  Yet the topic does not arise.

Of course, the social world is the greatest challenge to children with AS/HFA.  An inability or limited ability to understand reciprocity is at the heart of this challenge.  Chapter eight explores this concept.  One young man with AS/HFA describes his inability to "feel" reciprocity as being similar to a human's inability to "feel" echolocation -- a sense that bats have but humans can only understand in theory.  This chapter is devoted to strategies for building social skills and reviews clinical methodologies such as social skills groups and cognitive behavioral therapy.  But it emphasizes that such therapy is not sufficient to teach all social skills or to generalize them to other situations.  Thus it promotes home strategies such as social stories, peer modeling and play groups, among others.  Emotional regulation is also an important topic in this chapter since it has a large role in a child's ability to interact appropriately with others. 

The final chapter is on late adolescence and adulthood.  This chapter has less of a focus on problem solving and more of a focus on providing information about what hurdles and challenges parents and growing children will face along with advice on how to prepare for these stages.  One of the stated goals of the chapter is to help parents distinguish whether particular adolescent problems are a result of autism or of adolescence itself.  It is not clear that it succeeds in this goal, but it certainly identifies a great many issues for which parents need to prepare. These include the ongoing decisions of whether or not to disclose the AS/HFA diagnosis to others, finding support people for the teen or adult, dealing with issues of independence, educating about and dealing with sexual development, navigating the world of romantic relationships, functioning in college, making appropriate living arrangements and finding and keeping employment.  This chapter makes the process of raising a child with AS/HFA look like a cakewalk compared to the challenges of launching him or her into the world.  But to be warned is to be prepared and this chapter provides a great starting point for researching all the options and strategies for success.  It also points to other sources of information and support. At the end of the book is a fifteen page appendix of resources divided by subject and source.

Parents often wish that children came with instruction manuals, probably none more so than parents of children with special needs. This is not exactly an instruction manual, but it is the closest thing to it. No two children are alike, even those with the same label, and this book takes that into account.  It offers a variety of solutions and strategies for children with varying needs and strengths.  It is not a cookie-cutter approach.  A Parent's Guide belongs on the book shelf, or better yet, bedside table, of all parents of children with AS/HFA.

© 2003 Kristin Nelson

Kristin Nelson, M.A., is an assistant professor and medical ethicist at Rush-Presbyterian-St. Luke's Medical Center & Rush University in Chicago.  She is also the mother of three-year-old twins on the autism spectrum.