11/28/2008 05:12 am ET | Updated Nov 17, 2011

Autism and Politics: We're On The Island of Misfit Toys

There's been a lot of talk about disabilities on the Presidential campaign trail. Sarah Palin has been presented by the McCain campaign as an expert in disabilities by virtue of the fact that she has an infant with Down Syndrome and a nephew with autism. The Obama campaign has put out statements regarding the Senator's commitment to disability issues and correlated that to having a staff member with a child with autism.

Well aren't we just in the news, autism Moms and Dads? Big whoop, I say. Newsflash, autism is to the disability world what cervelles de veau is to a snooty, French restaurant menu. Sure, it's French food, but it ain't Chateaubriand, no one quite knows what to make of it, and very few people order it. (I'll digress from my topic for a moment to share the origin of my cervelles de veau reference. As a senior in college, when autism was still 1 in 10,000 if I may date myself, my boyfriend and I went to dinner at one of New York's finest restaurants, La Cote Basque, which closed in 2004. I've no idea why we decided to go so fancy. Perhaps because he had his dad's credit card. Anyway, I used my best high school French and ordered the cervelles de veau, knowing that veau meant veal. God bless the waiter who asked me, "Miss, have you enjoyed calves brains in the past?" I blanched and ordered something else, I don't even remember what -- I'd have taken the frogs' legs over the calves brains!) OK, back on track now.

Yukon Cornelius, the silver and gold metal prospector from Rudolph the Red Nosed Reindeer, sums Hermie the dentist's and Rudolph's plight on The Island of Misfit Toys like this, "Why even among misfits you're misfits!" because they aren't toys. That's how it feels have to children with autism. We never quite fit into any disability, teaching or medical model other than those created just for autism.

Until recently, many people with autism did not qualify for basic state level services through departments of developmental disabilities because their IQ's were too high to meet the "mental retardation" criteria by which departments provide services. And yet, some of these folks could not hold a job or live independently. Massachusetts, a liberal state with excellent services for people with disabilities, only added an autism division three years ago to address the fact that many people with autism were falling through the cracks.

Take a look at health insurance. If you've a child with Down Syndrome, your insurance will cover the myriad medical issues you're likely to face, including heart surgeries. You've probably seen that states are just now adding mandates for services to cover people with autism. And they are spotty at best. It's an uphill battle to get even basic speech and occupational therapy and even harder to get ABA therapy within the confines of health insurance, let alone actual medical treatment.

Autism isn't a physical disability whereby the hurdles are a function of access or mobility.

Tiptoe into the iceberg called "causation" with me for a moment. If you've a child with Cystic Fibrosis or Muscular Dystrophy or any number of genetically identifiable or medically diagnosable diseases, as a parent you take stock of the situation and act in concert with the entire medical establishment to help your child, knowing that the disability was a fait accompli over which you had no control. If you've a child with autism, you may have watched your typically developing toddler stop speaking, develop GI problems, start flapping his arms and float ever further away from you emotionally, like a cork in a current you can't control. This alone is a stark difference between autism and other disabilities.

As my colleague at Age of Autism Dan Olmsted keeps reminding us, autism is a new disability and the numbers have exploded in the last two decades. That means our children were not destined for a life of disability. Their disability was probably the result of causes we (or someone) could have controlled, including vaccinations and environmental pollution. Here's an analogy (I know, I know, there she goes with the analogies.) If you're the parent of a child who runs into the street and is hit and killed by a car, you're devastated. But if your child is knocked off his tricycle by a drunk driver who runs up onto the sidewalk where you were peacefully minding your own business and tending to your child who had on a helmet, arm pads and knee pads, you feel another level of devastation and even anger. You'd done everything you thought you could to protect your child, and yet somehow you end up wondering if you pushed your child into the car's path.

Many of us in the autism world are particularly concerned about the state of vaccine safety and parental choice, including the availability of medical, religious and philosophical vaccine exemptions. This does not make us "anti-vaccine." I'd liken us to the parents who started MADD in response to drunk driving. MADD didn't say, "We need prohibition! Outlaw liquor for everyone!" It fought for better laws, more understanding of the ramifications of drunk driving and measurable changes to the definition of drunk driving (blood alcohol levels) to increase safety for the general population. That's what we want in the context of the vaccine safety and parental choice debate.

So while it's encouraging to hear the word "autism" included in the political discussion, both campaigns need to know that we don't fit easily into their Santa Claus sacks of promises.