My mom saved me from a life of despair.
Her attitude is the key to my achievements.
She made me feel I could be a success, no matter my challenges.
—JEREMY SICILE-KIRA
SINCE this book was first published in 2004, much has changed in the world of autism, as well as in our son, Jeremy. When Jeremy was first diagnosed over twenty years ago, we were told that if we were lucky, we would find a good institution for him. I don’t think the diagnostician meant the United Nations, but that’s where Jeremy ended up—as the first Youth Representative to the United Nations for the Autism Research Institute at age twenty-three. He also graduated from his local high school at age twenty-one, with an academic diploma and a GPA of 3.78, despite having to type to communicate. He auditioned for and gave a commencement speech using voice output technology that is still inspiring many on YouTube (more on Jeremy later).
But Jeremy’s achievements did not happen overnight. It took finding the right professionals to help him; taking care of medical challenges; advocating and negotiating for him when he was a child to ensure he had an appropriate education; working as a team with the great educators we found; and lastly raising and teaching him with the attitude that he was smart, and that one day we would reach him. It wasn’t easy. But I left no stone unturned in finding the resources that could help him.
This updated edition of my first book will guide you in finding the courage and the resources you need to make the best possible choices in regard to treating, educating, and raising your child. Every child is different—what helps one child with autism may be ineffective for another. Although there is a lot more information available now than when Jeremy was a baby, parents still need to become experts on their child and what could help him or her. This new edition has been completely updated with the latest information and the best websites to consult as new discoveries are made.
Although Jeremy is my inspiration for all the writing and training I do now, my first experience with autism was during my college years. 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, 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 in France, I had my son, Jeremy, 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 four-year-old son. Eventually, we moved to England before making our way back to California, where Jeremy is now a client of the same types of agencies I used to interact with on a professional level.
I could have used a book such as this one years ago, when I tried to learn whatever I could to help my clients, and then again after having my son. Having spent tens of thousands of hours learning about autism spectrum disorder (ASD), how to navigate through the different systems in different places, and how to create what my son needed, it seemed a waste to hoard all that I had learned for the benefit of just my family. That is why I wrote the original edition of this book, which won the Outstanding Literary Award from the Autism Society of America and a San Diego Book Award. Since then, I’ve gone on to write five more books and to speak around the world to provide parents and educators with the practical information they need. Everywhere I’ve been I’ve learned from other parents and educators, as well as from those on the spectrum who have shared their experiences. More recently, I’ve created autismcollege.com, so that those who cannot get to conferences can still access my practical information and training online.
Educators and other professionals will find useful nuggets to help them with their students or clients. This book is written simply, with practical tips, in order to point 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.
People who come across those who have 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: babysitters, recreation leaders, emergency responders, storekeepers, scout leaders, bus drivers . . . basically anyone who works with the public. With a diagnosis rate in the United States estimated to be as high as 1 in 50 schoolchildren, everyone knows someone whose life is touched by autism, and your clients, customers, and coworkers are some of them.
Back to Jeremy—today he is twenty-five. After graduation, he attended some community college classes and coauthored a book, A Full Life with Autism: From Learning to Forming Relationships to Achieving Independence (Macmillan, 2012). He became a Young Leader for the Autistic Global Initiative of the Autism Research Institute. In the last year, Jeremy began creating beautiful abstract paintings. In 2010, his therapists and I realized that Jeremy has synesthesia; he see letters and words in color, and he perceives and feels emotions as different colors. In 2012, Jeremy began to type out and describe his dreams, and his desire to learn how to paint. Recently, he created Jeremy’s Vision to encompass his writing, painting, consulting, and advocacy work. As our children grow, it is important to find those areas of strength and interest to help them learn and enjoy life, and to find mentors to help them develop their areas of strength. Jeremy’s story is an example of how people on the spectrum can always learn and discover new interests—just as neurotypicals do. It is important that they be given the opportunity to do so.
Yet, despite all of his accomplishments, life has not been easy for Jeremy. He still requires twenty-four-hour support. He has many sensory-motor challenges. He is working toward moving out into supported living. He wishes he had more friends. But, all in all, life is good—he can communicate by typing and he is learning to be more interdependent—as well as independent. And now he has his painting, which is opening new doors for him.
Parents, this book was written with the goal of saving you countless hours of precious time and heartache. You have enough to do! Hopefully this book will also inspire you, inform you, and motivate you. Knowledge is power, so use this guide to empower yourself. Keep in mind that you are not alone. The autism community is here to help you.