New figures have just been released by The Center for Disease Control and Prevention (CDC) just in time for Autism Awareness month: one in 88 children and one in 54 boys in the U.S. has an autism spectrum disorder. We'll be hearing about the need for services for the newly diagnosed, and they will need help.
But let's not forget about the 700,000 to 800,000 teens and young adults who will be leaving the school system in the next few years. Our society is not prepared for the sociological or economic impact of this, and the transition to adulthood is particularly hard for those with autism and their families as they exit mandated school services for real life as adults.
My son Jeremy recently exited school services and the transition to adult services is no picnic. As a parent, I didn't expect that everything would be handed to my disabled son on a silver platter, so we had done our homework and we had plans. Yet like real life, nothing goes as smoothly as you would like. It's the same story for all families. So Jeremy and I decided to write a book about it, each from our own perspective: A Full Life with Autism: From Learning to Forming Relationships to Achieving Independence.
Jeremy is severely impacted by autism, yet graduated from high school at the age of 22 with a GPA of 3.78, and gave a commencement speech using voice output technology. But he still requires 24-hour support. And he is not the only one.
The perspective of those on the spectrum is very important, which is why I'm happy my son is willing to share his experiences and point of view to help others. That's also why I've invited Temple Grandin, Ph.D. (subject of the Emmy-award winning HBO movie, Temple Grandin to answer questions from listeners on-line at AutismCollege.com on April 7th.
Here's what Temple, a professor at Colorado State University, bestselling author, consultant to the livestock industry on animal behavior and a very successful person with high-functioning autism has to say about preparing for adult life:
One of the most difficult times for many individuals on the spectrum is making the transition into adulthood. This is an area that is sadly neglected despite the fact that it is hugely important. I have had teachers and parents tell me many sad stories where a young adult loses a job or drops out of college because they were not prepared for a world away from home.
To write an informative book, Jeremy and I did the research on existing services and interviewed people to find out what innovative plans they had. It was empowering to hear all that families and organizations are working on, even if it is not enough. Variety in options is crucial. Change in the systems is necessary as well. As Jeremy puts it in the preface of A Full Life With Autism:
All of us on the spectrum are different from one another and our wants and hopes are as well. It is important to recognize that when planning our lives. Mighty systems are in place that don't understand this. Our nation was built on the principle that all people are created equally. Yet all Americans are not treated equally. African-Americans, women, gay people and the disabled continue to struggle, even those that have been given equal rights. Systems change will not happen unless we convince society that we are all differently abled yet deserve equal consideration.
So what are parents and their loved one supposed to do to prepare for adult life? The first step is to get educated about how to best prepare your loved one or your student. You can ask Temple Grandin on April 7th, and you can read what Jeremy has to say in the book. We know how hard it is for parents and for those on the spectrum. We want people to know the realities, but we want to empower them with the possibilities -- because everyone deserves a full life.
Follow Chantal Sicile-Kira on Twitter: www.twitter.com/sicilekira