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by Sally Ozonoff, Geraldine Dawson, and James McPartland Guilford Press, 2002 Review by Kristin Nelson, M.A. on Sep 25th 2003
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.
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