By Cathy Jameson
Last week, after listening to the Interagency Autism Coordinating Committee’s (IACC) meeting—but minus those in attendance who tirelessly offered their insight and efforts to treat and prevent the ever-growing autism epidemic, I walked away quite upset. I shouldn’t have expected much, I know. But, if you’ll remember I’m a dreamer. I’m a hoper. Most importantly, I’m a Mom who wants the help others avoid the negative side of autism—the kind that severely affects my son.
So, against my better judgment, I gave the IACC another chance. And why shouldn’t I; they claim they exist to help. The IACC is “…a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services (HHS) concerning autism spectrum disorder (ASD). Through its inclusion of both Federal and public members, the IACC helps to ensure that a wide range of ideas and perspectives are represented and discussed in a public forum.”
The IACC was established in 2006 when the autism rate was 1 in 110. It came about with the enactment of the Combating Autism Act. The key word in that sentence: combat. Unless they’re using a different dictionary, combat means to fight against or to do away with. With that in mind, you’d expect the agency, would actually work toward not just addressing but doing something about autism and its rising rate.
Instead, meeting after meeting, and for far too long now, it feels like the IACC is still merely just talking about autism. Anyone can have a conversation about autism. I do on a daily basis. But when I talk about it, I’m giving tips to parents on how to prevent it. I’m sharing ideas with a therapist on how to treat it. I’m also participating in action alerts on how to support practical changes to make affected children’s lives better. I’m sharing real experiences peppered with practical solutions.
When I talk about autism I’m not tiptoeing around hoping no one will notice how much it’s been ignored. I’m not suggesting wasting valuable dollars on more uninformative research. I’m not citing inaccurate statistics, skewed by fraudulent individuals who are doing their damndest to cover up an epidemic that didn’t have to be. I’m not dismissing the pleas being voiced by thousands of frustrated parents. I’m not writing off the useful answers, advice and professional opinions of those in the trenches who truly know autism. And I’m not creating more committees and subcommittees to talk about unnecessary data about autism. I, unlike the IACC, am making an effort to combat autism. They, for reasons that I am unsure, are not.
You’d expect the experts who sit around the IACC table to do more than just consider what their invited guests and speakers have offered. You’d hope the people who sit on such a committee could be the ones who’d crack the whip. You’d even expect them to get something done. In searching for why they haven’t, I gave a hard look at the IACC’s mission and at who they’ve chosen to sit around the table. In doing this, I discovered I have less respect, expectations and hope for the committee. Why? After Wednesday’s deplorable meeting, I realized that the IACC doesn’t exist to prevent autism like I’d initially thought.
The IACC isn’t there to offer funds to those who support a person with autism. They’re not there to promote action. They’re not there to rattle the doctors and providers whose unsafe practices contribute to autism. Nope. To me, it looks as if they exist as just a bunch of talking heads. And if I’m right, then they are doing their job. And they’re doing it quite well because:
• They are there to talk about a disorder that affects 1 in 50 (but in actuality is more like 1 in 29).
• They are there to admit that autism affects many, many people.
• They are there to state facts.
• They are there to nod their heads in agreement that yep, something’s up.
• But they are not there to really do anything about it.
• No action required
• No reallocating gobs of available research money to families in need right now.
• No admittance of anything.
• No acknowledgement of another.
• No mission to combat autism or to ever make it stop.
Nope. Just talk, talk, talk, talk, talk, talk. Talk all about autism. Do it all damn day long and all over again every few months when another meeting is scheduled.
Why do I think this? Check out their mission statement:
The IACC exists to:
• Provide advice to the Secretary of Health and Human Services regarding Federal activities related to autism spectrum disorder.
• Facilitate the exchange of information on and coordination of ASD activities among the member agencies and organizations.
• Increase public understanding of the member agencies' activities, programs, policies, and research by providing a public forum for discussions related to ASD research and services
For those who benefit from simply talking about autism, for those who believe that autism is a gift, and for those who could care less about one more kid with autism dying after wandering, the IACC must be perfect.
For those of us who want to make changes for the better, who don’t think autism is a gift, who also believe in recovery, and who wish things were so very different for their children, we were doomed the moment the IACC was created.
Unless their mission changes, which is highly unlikely, we should ask that this committee be disbanded. A different advisory committee, made up of people who really understand autism and who spend their life’s work to support those affected by it, would better serve our community and our children’s futures. I’ve got a few nominees I’d like to suggest, but I’ll save those for another post. I’ll write that after I can stomach re-watching the IACC broadcast and listening to the drivel from some of those members who should have been given the boot long ago.
Cathy Jameson is a Contributing Editor for Age of Autism.