Thursday, April 14, 2011

autism: transitioning to the unknown

Like most issues, Autism in the macro view is nearly incomprehensible. Living with autism as a family may even be unimaginable for most.

“In the next 15 years, an estimated 500,000 autistic children will graduate out of school systems in the U.S. and into the unknown. Meaningful programs for them are scarce, and funding even scarcer. …

“You’re devastated twice: first, with the diagnosis; then, years later, when you realize that after all the interventions, you still have a kid with autism and you have to plan his future.”

That planning process—which begins during a child’s teenage years—is called “transition,” but many parents can’t tell what exactly they’re transitioning to. Only about 3,500 programs are available nationwide for autistic adults, compared with 14,400 for autistic kids. Some are little more than day care, while -vocational programs may consist of participants working for a company in isolation, doing piecework like shredding paper. “It’s not what we want for our kids,” says Jeff Sell, a vice president of the Autism Society and the father of autistic twins. “The situation in many places is sad, disheartening, and disgusting.” Autism’s Lost Generation: Who Will Care For Dana? 

Here in Pennsylvania"The major problem plaguing Pennsylvania’s system is the care provided after high school. Many young adults have nowhere to go after graduation because group homes and other facilities have years-long waiting lists and the funding for waivers, which allow special needs adults to live independently or semi-independently, is not being increased.” State Rep. Tom Murt to host disabilities awareness walk and resource expo

We had no clue about anything related to autism until Jennifer and Tyler became part of our story. Single parenting a severely autistic child to the age of 18 should be a legacy until itself rather than the beginning of an even longer caregiving unknown.

Frustratingly public awareness campaigns are like leading that proverbial horse to water. Shared story by story, face by face through social media – maybe just maybe the future may have more hope.

Caregivingly Yours, Patrick Leer 
web site: caregivinglyyours.com  

4 comments:

  1. There certainly is no easy answer, is there Patrick? It seems like there should be programs that go on beyond school, beyond reaching adulthood for something that is not likely going to get better. You have to feel for parents wondering what will happen in the years ahead too when they are no longer able to be advocates for their children. All around sad situation indeed.

    betty

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  2. Patrick, I read the links you posted and the links on the links, etc. Surfed pretty far out into online autism world. Was quite discouraging especially in the context of the current political climate.

    While we need to seriously address the deficit, I fear for the few patchwork programs available as well as any existing but limited safety nets which are already so $%*& ding-dang hard to get, use, etc.

    Donna

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