For those that don’t know already April is Autism Awareness month and this past Saturday marked the fourth annual World Autism Day. To commemorate World Autism Day a national organization called Autism Speaks launched their annual Light it Up Blue campaign on the evening of April 1. Prominent buildings and structures in cities across the U.S. as well as other countries, including the Empire State Building, were lit up with blue light to “shine a bright light on autism.”
As a parent of a child having autism I wonder if I am supposed to say “thank you for the blue lights”? Is it just me but do you grow weary of the puzzle piece icons which are supposed to symbolize autism and the bumper stickers declaring your love for someone autistic? And now we have theatrical blue lights emanating from stadiums and towers to make people aware of autism. I have a better plan. Allow people to spend a day with my son. My son would ensure that the recipients would be fully aware of autism by the end of that day. My husband and I joke that when we take our son into the community that he is the Ambassador of Autism. And you would be surprised at how many people not only are not aware of autism but seem to have little motivation to gain that awareness.
In my opinion, an article in the Parade section of my Sunday newspaper did more to promote real autism awareness than all the blue lights or puzzle pieces in the world. The story is entitled, Autism’s Lost Generation: Who Will Care for Dana? They tell the story of Dana Eisman, who is twenty years old, graduating from school, and has autism. Her parents are frightened about Dana’s future as an adult because their daughter is not independent. They also wonder who will care for Dana when they are no longer around.
Most parents celebrate this time when most young adults are preparing for college or career. But for some parents who have a child who is severely impacted by autism, this transition out of school leaves few options for the future. This article especially hit home for me because we are in the same boat. My son is now a teen-ager and whereas once there were many choices of programs and services when he was younger, now there are very few. As this Parade article indicates, there are about 14,400 programs for autistic children available nationwide and in comparison only 3,500 programs for autistic adults.
In a previous post for Autism Awareness month I had interviewed Stephen Shore, author of Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome. The thing I remember most about my interview with Stephen Shore was the part when I asked him to talk about some of the myths about autism. Here is his very poignant reply:
“One myth about autism is that children with autism never grow up to be adults. There is a very heavy emphasis on young children who have autism but there is very little focus upon adults. These kids will grow up and we need to provide for them when they become adults.”
I think Stephen was right on with this advice. There is so much focus on early intervention that it almost sets parents up for a great fall when some parents realize that despite all the therapies, biological treatments, diets, supplements, expensive behavioral programs, and the most extensive IEP’s their child may still have great challenges even in their later years. Another myth is perpetuated that children can “grow out of autism” or they can somehow miraculously be cured. Some would argue with this, but autism is considered to be a life-long disorder. What this means for parents is, that you are in this for the long haul. Your child will someday be an adult and as difficult as that may be to contemplate, it will happen.
The Centers for Disease Control and Prevention are now citing a statistic that an average of 1 in 110 children has an autism spectrum disorder (ASD). That is a lot of kids who will grow up to be adults someday. And as the Parade article points out, in the next 15 years an estimated 500,000 autistic children will graduate from their school system. Where will they go? What will they do? Who will care for those autistic adults who are not independent? Who will pay for their care? These are just some of the many unanswered questions many of us will face as our children grow older.
It is my hope that one result of autism awareness campaigns is a greater emphasis upon providing a future for autistic individuals as they transition into adulthood. All children grow up, even kids with autism. It is time we are aware.
For more information about autism please refer to the following Health Central articles and resources.
• My Interview with Stephen Shore, author of Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome