Extract

Preface

Twenty-five years ago, in need of a full-time job to sustain me through college, I applied for a position at Fairview State Hospital for the Developmentally Disabled in Orange County in California, and was hired to teach adolescents self-help and social skills in preparation for community living. This was my first contact with the intriguing world of autism and some wonderfully unusual people (including the staff). I then worked for a short while as a case manager at Orange County Regional Center for the Developmentally Disabled, providing information and resources to families and their children.

Little did I know that my professional introduction and hands on experience would serve me well when, twelve years later I had my son Jeremy in France, who was eventually diagnosed with autism. The only course of treatment offered there at the time was psychoanalysis. I was strongly reprimanded for using behavioral techniques in an attempt to teach my 4 year old son. Eventually, we moved to England before making our way back to California, where Jeremy is now a client of the same agencies I used to deal with on a professional level.

Today Jeremy is fifteen, and I have this sense of deja vu, just like Bill Murray’s character in the movie Groundhog Day who wakes up every morning and lives the same day over and over again. For twenty-five years I’ve been getting up and researching for resources and new information in different countries, creating solutions ‘outside the box’, advocating, going on community outings and trying to teach appropriate behavior in public, only now it’s to and for my own son.

Living in three different countries and challenging the status quo in each one has developed my resourcefulness, creative thinking and negotiating skills to a level I never dreamed possible. Having a child with autism is challenging, but building all the family, educational, medical and community support systems needed is the real challenge. And everyone has a responsible part in this, not just the parents.

Thankfully, attitudes toward autism have changed over the past decade and people in general appear to be more tolerant, which is a good thing considering that autism spectrum disorders (ASDs) have risen to epidemic proportions in many parts of the world. Another positive change is that people with differences such as ASDs, are equal citizens and take part in everyday life, in community and recreational programs; they work and live in the community and attend college.

Yet in spite of the rise in ASD’s and the integration of people with this ‘invisible disability’ in all aspects of our society, there still seems to be a lack of basic knowledge available on the subject. Everyday people with everyday lives need to know a minimum of information about ASD’s to give them an understanding of their neighbor and fellow citizen - which is why I wrote this book.

People who come across those who have an ASD in their line of work can read the chapters they think will help them most. In Chapter 8, I have included a section that is helpful for the general public who may occasionally come across someone with autism: emergency responders, storekeepers, the scout leader, the bus driver.... basically anyone who works with the public. With diagnosis rate as high as 1in 166, and in some places 1 in 150, everyone knows someone whose life is touched by autism, and your clients are some of them.

General education and special education teachers and administrators, job coaches, and other professionals who work in the field will find nuggets of information. This book is written simply with practical tips in the hopes of pointing the reader in the right direction for more information if needed.

Adults who have been recently diagnosed will find information that is useful in different chapters. Hopefully this book will provide some insight and support.

Parents, this book was written in the hopes of saving you countless hours of precious time and heartache. You have enough to do! Having spent tens of thousands of hours learning about ASDs, how to navigate through the different systems in different places, and create what my son needs, it seems a waste to hoard all I have learned for the benefit of just a few people. Hopefully this book will also inspire you, and remind you that you are not alone. Knowledge is power, so use this guide to empower yourself.

I could have used a book such as this twenty-five years ago, when I tried to learn whatever I could to help my clients, and then again after having my son. I have written this book in the hope that it will inform and help many people.