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The Autism Sourcebook: Everything You Need to Know About Diagnosis, Treatment, Coping and Healing (Karen Siff Exhorn, 2005)

Can too much information be a bad thing? These days the market seems overcrowded with books on autism. Many of these books are of dubious value, even though most seem to find some prominent autism expert (often business or professional colleagues of the author) to endorse them.

In such an environment, it can be very difficult for parents to choose which books will be the most helpful for their particular child. Probably the best single book to start you on your reading journey is Karen Siff Exhorn’s excellent The Autism Sourcebook: Everything You Need to Know About Diagnosis, Treatment, Coping and Healing (2005).

This book has been endorsed by many luminaries in the autism world, including Temple Grandin, Suzanne and Bob Wright (co-founders of Autism Speaks), and leading autism researchers Geraldine Dawson, Catherine Lord, and Fred Volkmar. And this is definitely one case where the endorsements are merited.

No other autism book so nicely balances the provision of practical information, reliable research, and emotional support. As Fred Volkmar, M.D., of Yale University’s Child Study Center writes in his Forward to the book:

…Karen provides a compelling and highly moving account of her own experiences as a mother of a child with autism. She introduces and describes the many treatments she came across in a nonjudgmental and even-handed manner. As she notes, some treatments for autism now have a strong scientific basis, whereas others are backed only by a handful of case reports. Some of these unproven treatments will be researched over the coming years – and only some of them will be shown to be effective. For parents who are struggling to decide which treatments are right for their children, this book will be an invaluable aide.

Of course, no book is ever going to tell you “everything you need to know.” It’s more like “everything you need to know to get treatment started as quickly as possible.” With its extensive bibliography of recommended books and web sites, the book also lays the groundwork for future research, as the interest or need may arise.

While there are some professionals who may find this book of interest, it’s principally written for parents. As a parent herself, Siff Exhorn lived through the whole diagnosis and treatment experience. She understands what parents want and need to know. Her writing style is clear and accessible, and she has an exceptional ability to explain technical topics.

One of the recurring themes throughout the book is: “Respect and value your instincts about your child – never ignore them, no matter what anyone tells you.” This is sometimes difficult to do in the face of “experts” whose recommendations may run contrary to what you believe is in your child’s best interest.

It’s not that parents have all the answers. But neither do professionals, even though they often don’t recognize that fact. Learning about the topics covered in the Autism Sourcebook will make parents feel less intimidated by misguided “experts.”

The Autism Sourcebook is divided into four parts, with sections on Diagnosis, Treatment, Coping and Healing. Each section begins with an introduction and is then divided into subparts. The subheadings often use a “frequently asked question” type of format, in a parent’s voice – e.g. “Why does my son constantly seem aloof? Most of the time he acts as if I’m not even there.”

The Diagnosis section has four chapters: 1) The Many Faces of Autism (discussing the various diagnostic classifications and the enormous variety among children even within a single category); 2) Who Diagnoses My Child? Going Beyond Your Pediatrician (with descriptions of the various professionals and tests); 3) Understanding Your Child’s Behaviors (discusses some typical behaviors associated with autism, like lack of eye contact or playing alone); and 4) Autism Spectrum Disorders: The Facts, Theories, Studies and Information You should Know (succinct summaries of some of the leading studies and current research projects and their possible implications for treatment).

The Treatment section has four chapters: 1) How to Make the Right Treatment and Intervention Decisions for Your Child; 2) Standard Treatments and Interventions for ASDs (the many “non standard” treatments are exhaustively described in an appendix); 3) You Have the Power - Advocating for Your Child’s Legal Rights (providing a basic overview of the law and including lots of practical tips for handling IEP meetings); and 4) On Your Mark, Get Set…Start Treatment (addresses many of the questions parents typically have about implementing treatment, and presents samples of different treatment schedules for children of varying ages and diagnoses).

The Coping section has six chapters: 1) In the Beginning, Coming to Terms With the Diagnosis and Issues Surrounding the Diagnosis; 2) Beyond Soccer Games and Ballet Classes: Coping with Issues Surrounding Treatment, Services and Schools; 3) Inside and Outside the House: Coping with Everyday Life; 4) Brothers and Sisters: Coping with Sibling Issues; 5) Keeping it Personal: Coping with Your Marriage, Your Family and Your Self; and 6) Advice to Loved Ones: Coping Tips for Family and Friends.

The final section, on Healing, is very short and consists of the author’s retrospective reflection on how the healing process unfolded over the years, both for herself and for other families she has known. One key insight she shares is that “One of the most important parts of the healing process is accepting your child for who he or she is right now. If you dwell on the past or focus all you energy on the future, you’ll miss out on the joy that’s right in front of you.”

Skiff Exhorn’s child “recovered” from autism with an intervention program based primarily on ABA treatment. But this book is not about “recovery.” However inspiring such stories may be, this is no tale of “Super Mom” heroics.

Unless they fall into the “rapid learners” category described by Lovaas, most children won’t achieve fully normal functioning no matter how excellent or timely their intervention. This book will help parents identify and procure the most effective interventions consistent with their child’s individual potential, regardless of his or her potential for recovery.

Perhaps most importantly, readers will learn how to ask the right questions about any proposed treatment. For example, is the treatment based on reliable evidence? Does it produce measurable outcomes? What kind of training should a competent provider have? What does “intensive” mean?

The author also alerts parents to important political realities that may affect the services being offered by an early intervention program or school system.

For example, those whose children are just beginning early intervention will learn early on (while there’s still time to do something about it) that some early intervention providers may recommend low cost interventions that are less effective than more expensive ones due to “subtle pressure from their administrative superiors.” Too many parents learn this painful lesson the hard way, over time, and that lost time can never be recaptured.

The extensive appendices, which contain a wealth of valuable information, are well over one hundred pages and constitute almost a third of the entire book. They includes a copy of the Modified Checklist for Autism in Toddlers (M-CHAT), a summary of the Diagnostic Criteria for the Five Pervasive Developmental Disorders (from the DSM-IV-TR), a comprehensive list (more than 20 pages) of Treatments and Interventions for Autism Spectrum Disorders, contact information for all of the national and international autism organizations, an extensive list of internet sites and books, and a glossary.

A new hardcover copy of the book costs $27.95 but there are much cheaper used or remaindered copies available through some of Amazon’s resellers.

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