The calls used to come at least once every six weeks: “A friend of mine gave me your number. My son/daughter has just been diagnosed with autism/Asperger’s Syndrome and I don’t know what to do. Where do I begin?”
As the parent of two children "on the spectrum," I know how scary it is for a parent to hear that diagnosis. When my older son was evaluated in 1998, there were only two books at the Los Angeles library about children with autism that were written in language the average parent could understand. At that time, the disorder was just seeing an increase to 1 in every 500 children, alarming medical professionals and researchers who had long regarded autism as a rarity. The one plus side of so many cases of ASDs being diagnosed today (approximately 1 in 150) is that there are now a variety of publications and resources available.
Here is a sample of the books and websites I have found most helpful. You may want to check the books out from your local library system or preview them on Amazon.com before you buy:
Books
The Complete Guide to Asperger's Syndrome by Tony Attwood
Dr. Attwood is the physician in England who first brought worldwide attention to the growing number of children with Asperger's. This guide, written in 2006, has the latest information but may be skewed to a British audience. Still, lots of good stuff for the newly diagnosed. Also check out The OASIS Guide to Asperger Syndrome: Completely Revised and Updated: Advice, Support, Insight, and Inspiration by Patricia Romanowski Bashe, Barbara L. Kirby, Simon Baron-Cohen (yes, that's Borat's brother) and Tony Attwood.
Hitchhiking Through Asperger Syndrome by Lise Pyles and Tony Attwood
Great book, written from a parent's perspective.
Asperger Syndrome and Adolescence: Helping Preteens & Teens Get Ready for the Real World by Teresa Bolick
Good, basic information for parents.
Freaks, Geeks & Asperger Syndrome: A User Guide to Adolescence by Luke Jackson
Fantastic book, written by a young teenager with Asperger's. I used this one to help explain to my older son what he has and that he is not alone.
Web Sites
Just as there are now more resources overall for kids with autism/Asperger's , there has been a similar explosion in the number of scary or questionable web sites offering advice and "cures" for autism. Here are a few of the most well-established sites to help you begin your research on solid footing:
Autism Society of America (the oldest autism org, founded by parents)
MAAP Services for Autism and Asperger Syndrome (a nonprofit organization aimed at helping children with Asperger's and High Functioning Autism)
Your Little Professor (weak name, but good information)
Autism and Asperger's Syndrome (a site run by the University of Southern California; lots of good links)
Finally, there's an article I wrote some years ago about the emotional side of being the parent of a child on the autism spectrum, when I edited a special issue of Olam magazine.
Diagnosing Asperger's is just the first step in a long journey. Please feel free to leave a response here if you’d like more information, or have a resource to share.
