Managing Editor's Note: Most of us are not willing to gamble that complete accommodation and acceptance are realistically possible, let alone enough for our kids, which is why we work so hard for them.
By Anne Dachel
July 12, 2011, Lisa Jo Rudy surprised me by writing a post on her blog about my story on AoA. (Age of Autism HERE)
In Do Acceptance and Accommodation Equal Surrender? (HERE) Lisa Jo discussed my objections to just asking for accommodation and acceptance for autism without demanding that we find the cause and stop the epidemic. Lisa Jo did a nice job and I was flattered that she took the time to write about my post. Here is the email I sent her.
Thank you for your interest in my Age of Autism post. You summarized my feelings pretty well. I want acceptance for individuals with autism EVERYWHERE. I'm a mother, a teacher, and a national advocate. I work with autistic children and attend IEPs to ask for the special help they need.
My problem with only asking for acceptance is that we're inexplicably willing to leave autism as a mystery that experts just can't solve. It isn't so much that we're allowing people to cause autism; it's that we don't demand answers with a sense of urgency. We're supposed to have the best health services in the world. Our Centers for Disease Control and Prevention gets billions of dollars to run health care and they've been clueless for the last two decades when it comes to answers about autism. Millions have gone into the search for the elusive genetic cause of autism.
Recently, research funded by NIH found that autism is more likely caused by environmental triggers. It was published as big news. The only problem is that no one knows what those triggers might be. The list of possibilities is growing: older moms, older dads, pesticides, having children too close together, living too close to a freeway, antidepressants during pregnancy, a lack of vitamin D or the more than 80,000 untested chemical our children are exposed to. I'm expecting the next two decades will be spent trying to find what in the environment is causing children to become autistic with no definite answers because the last place they'll consider looking is the ever-expanding vaccination schedule.
As media editor at AoA, I monitor what the press says about autism, and while the controversy over vaccines is often a topic, most stories about autism are local news. They're about a walk for autism or about autism services in a community school. More and more however I'm finding stories like these:
Bridgeport CT, June 17, 2011:
What happens when children with autism become adults? Families of adults with autism face that intimidating question every day.
The reality is that few services are available to assist adults with even mild autism, and even fewer opportunities for them to further their education, work and socialize; in short, to live full, productive lives. . . .
New Jersey, July 3, 2011: Construction begins on housing in Warren
Housing for developmentally disabled adults is at a crisis stage, according to Mount Bethel's leaders, with thousands of New Jersey families on waiting lists for group-home placements
Denver Post, June 14, 2011: Disabled adults, likely to outlive parents, face unclear future
The prospect of disabled adults outliving aging parents is a "demographic time bomb," said a state official who asked not to be named.
Allentown PA, July 4, 2011: What Happens To Adult Children With Autism?
There are 1,717 disabled adults waiting for a place to live and 1,178 waiting for help with transportation and other services, said Liz McDonough, spokeswoman for the state human services department.
The state realizes the problem could worsen as the disabled population ages, McDonough said. But with constant budget cuts, "we have not figured out how we're going to meet those needs," she said.
Reuters, June 28, 2011: Schools teach disabled life skills http://www.reuters.com/article/2011/06/28/us-autism-schools-idUSTRE75R4R220110628
The number of U.S. children with developmental disabilities has been climbing over the past decade, reaching nearly one in six, and the fastest growth rate is among those with autism, according to the Centers for Disease Control and Prevention in Atlanta.
At the same time, a study this month criticized the lack of services for adults with intellectual and developmental disabilities, such as group homes or job opportunities. The vast majority are unemployed and live with aging parents, who rarely plan for new living arrangements as they grow older.
This is a question all parents of children with Autism ask themselves every day. There are minimal services available and the ones that are available cannot support all of these adults. What is a family to do? . . .
In this day of budget "belt tightening", we must consider how the current reduction of funding for services for adults with special needs will negatively impact their outcome in the future. The rate of autism is increasing and funding is decreasing.
As today's children grow into adults, we can expect them to need more support, not less. We need to continue to emphasize these issues not only based on the challenges of today but also even greater challenges for all of those impacted by Autism will face tomorrow.
I think things boil down to the claim that autism is an epidemic affecting kids at never-before-seen rates. When we talk about autism, we're always talking about children with autism. The rate of one in 110 comes from studies of eight year olds, not eighty year olds. It's that simple. If autism has always been around, where are the 40, 60, and 80 years olds with the same signs of classic autism we see in so many of our children? No one has ever been able to show us these adults in significant numbers. (And I'm not referring the one percent rate they claim to have found in Britain using survey questions. I'm talking about adults who couldn't answer a survey and are in need of constant care and supervision.)
I work with a number of autistic teenagers. Their parents fear the future. They don't know what's going to happen when these kids are no longer covered by IDEA. If autism has always been here, there'd be no problem. Autistic young adults would go where adults with autism have always gone. But no one has shown us where that is.
Dr. Thomas Insel, head of the Interagency Autism Coordinating Committee (IACC) created by Congress to deal with autism, has said that 80 percent of Americans with autism are under the age of 18 and he warned that we need "to prepare for a million people who may be in need of significant services." Nothing is being done to provide for the approaching tsunami of dependent adults that will descend on social services in the coming years. The IACC now calls autism "a national health emergency."
A study in 2006 from Harvard researcher Michael Ganz found that lifetime cost for ONE INDIVIDUAL WITH AUTISM is $3.2 million. Others put the cost at between $5 and $10 million PER PERSON. It's frightening to think about what will be there in the near future for the autism generation as they age into adulthood and parents can no longer care for them.
Maybe when that happens we'll get serious about finding the cause of autism. Right now autism is bankrupting our schools. What will this country be like when it's not just a childhood disorder? I keep writing about this. I keep waiting for some official to explain how we're going to handle services for adults.
If we continue to do nothing, in another forty or fifty years, this current generation will be getting old, but the children with autism will keep on coming. The disorder will eventually affect all age groups and we won't remember a world without autism. The question is: How are we going to pay for it?
Anne Dachel is Media Editor of Age of Autism.