Excerpt: Fear Factor
For most of us, the first time we heard the words “Asperger Syndrome” was when our children were being diagnosed. So we weren’t just hearing about a disorder we’d never encountered before, we were being told our children had it.
There are myriad emotions we feel at a time like that: worry, disappointment, sadness, in some cases relief (that it isn’t something worse), anger, concern. But the one word that pops up most often when parents talk about their emotions is fear.
We’re all afraid of something related to our children’s AS, and it’s not always the same thing. Some of our fears are entirely rational and based on the scientific data being gathered about Asperger Syndrome, and others will not stand up to logical scrutiny. But they are no less real.
For example: I know, from having read about autism spectrum disorders and literature on AS, that our children, from the time they are about nine years old until they are eighteen, operate on an emotional level that is roughly two-thirds of their chronological age. Josh, at twelve, acts like an eight- or nine-year-old. I also know that this aspect of the disorder will improve; by the time Josh is twenty-four, for example, his emotional age should be indistinguishable from any other man in his mid-20s. I know that because there is scientific proof, literature by clinicians who have performed painstaking studies and formulated conclusions over years of research. I know it because it is a proven scientific fact.
I just don’t believe it, that’s all.
My deepest fear for Joshua right now is that he will “plateau” emotionally, that he will always be someone who acts like a child. He still cries too easily, uses phrases that are inappropriate for his age, has a higher-than-average voice, and in all manner except physically, could be mistaken for a much younger child. You can tell me from today until the end of next week that AS isn’t that kind of condition, that no one with AS has ever exhibited this problem, that every single child with AS manages his or her way through adolescence and eventually find emotional maturity. Even though the intellectual part of my brain will agree with you, the emotional side is from Missouri, and must be shown something before it will believe you. When I can talk to my son and conduct a conversation on the same level as his chronological age, I will be convinced. Until then, it’s all theory.
Praise
“Finally, a book that addresses the PARENTS of children with AS. In The Asperger Parent, Jeffrey Cohen addresses parental challenges—difficult ones that parents frequently encounter (such as family and friends believing the problem is the parents’ ‘parenting style’). I highly recommend this WONDERFUL ‘support’ book for all parents of children with Asperger Syndrome.”
—Diane Adreon, Associate Director, Center for Autism and Related Disabilities and a parent of a child with AS
“Jeffrey Cohen’s heart-felt story welcomes and connects the reader to the challenging, yet often humorous world of parenting child with Asperger Syndrome. From the trials to the victories, to Josh stating that he ‘likes having Asperger Syndrome,’ there is much for everyone who wants to further their understanding of parenting child with Asperger Syndrome.”
—Stephen M. Shore, Author of Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome
“An easy-to-read and well written, often very funny, book that is a great resource for any parent of a child with AS… equally valuable for educators by helping them to understand the everyday issues that confront families of children with AS. What sets this book apart is that Cohen moves beyond reporting on one family’s story with a child with Asperger Syndrome through interviews with other parents, experts in the field, etc… Cohen’s goal is to provide emotional support without being clinical and dry.”
—Brenda Smith Myles, The Source, Asperger Syndrome Coalition of the U.S. (ASC-US)
“This book is a must-read for any parent of a child with Asperger Syndrome who has ever felt alone in the parenting experience. Jeff Cohen offers reassurance and camaraderie as a parent who has ‘been there’ and knows what it’s like.”
—Lisa B. Elliott, Author of Embarrassed Often… Ashamed Never
“Jeff Cohen has done an outstanding job of bringing (a parent support group) directly to us, suggesting we think of this book as ‘a support group you can take with you wherever you go.’ It is that and much more.”
—from the foreword by Lori Shery, President/Co-Founder, ASPEN, Inc.