I conducted an email interview with Dan E. Burns, Ph.D., author of Saving Ben about the new autism rates. His son is currently 22 and is dealing with issues now that will only get worse when the rising number of children now being diagnosed with autism become adults. After you read this, I urge you to leave a comment about your concerns. We need to make our voices heard.
You can also join me, Stacie with Super Mommy to the Rescue and Jon Gilbert with Same Child, Different Day in our email campaign to the government. You can read more about our efforts here, Government Officials Need to Respond to Rising Autism Rates. A copy of the email we are using can be found on my post, Reaching Out to the Government to Help Our Children.
Here are the questions and answers for my interview with Dan E. Burns is author of Saving Ben:
Question: What was your reaction to the new CDC autism rates?
Answer: I was surprised that the CDC rate 1 in 110 was not higher. The commonly quoted prevalence rate from October 2009 issue of Pediatrics was 1 in 91, and anecdotal evidence suggests that both rates understate the problem. Dallas Independent School District (DISD) had three or four autism classrooms fifteen years ago, when Ben entered the system. DISD is planning to open ten new special education classrooms this year, mainly to serve ASD students. Big picture, we are looking at a 10-fold increase in ASD students in the last decade. Clearly, there is a growing wave of ASD students rolling toward graduation.
Question: These rates are based on children diagnosed with autism. How do you see this affecting children when they are adults?
Answer: When Ben was diagnosed, his pediatric neurologist said, “Save your money for his institutionalization when he turns 21.” Ben is 22 and has aged out of the school system and related support services. He is at the lip of a tsunami of aged-out students who are about to hit the impact zone and will need jobs, homes, and supportive communities.
Question: Do you think the government will be prepared to assist such an increase in autistic adults in the future?
Answer: Governments are unprepared for the impact. As an example, last October, Ben interviewed with the Texas Department of Assistive and Rehabilitative Services in search of a job. He was informed by letter that “It has been determined that an employment outcome cannot be achieved because of the severity of your disability. Therefore, you are not eligible for vocational rehabilitative services.” Without a job, Ben’s opportunities to live in a group home are severely limited. And the supportive community that surrounded him at school has simply disappeared. Ben is left in the shore dump.
Question: 3. Do you think that the government is currently meeting the needs of autistic adults? If not, what will this mean for the rising number of autistic children when they are adults?
Answer: No, government is not currently meeting the needs of autistic adults. According to a CARD in Florida, “The Current State of Services for Adults with Autism,” 74% of autistic adults want to work, but only 19% are currently working.
As usual, policies pressure for a solution must come through parents. Advancing Futures of Adults with Autism (AFAA) is holding national town hall meetings and is preparing a national agenda for presentation to Congress and President Obama. Meanwhile, there are some things that parents can do for children who have not yet aged out. Here are five things I wish I’d done before Ben graduated:
Institute a rigorous program of household chores and savings.
Consider a summer job instead of summer school.
Participate in weekend work retreats with your ASD child.
Work with the school system to create internships in sheltered workshops.
Resist school system dependency. Teach your child to advocate for himself.
Whether our children are school age or adults, we are in this together.
Dan E. Burns is author of Saving Ben: A Father’s Story of Autism. See a 2-minute video review of the book, HERE.