For those that might not heard of this or understand its functions;
IACC (Interagency Autism Coordinating Committee) is authorized by CAA (Combating Autism Act of 2011) and is the Federal Autism Advisory Committee for all autism issues nationally. It has all Federal agency heads or their representatives that deal with autism and some public members.
The previous IACC members had seven questions which guides its recommendations of funding for Federal/National autism research, services and resources.
I am on question four planning group which is – Which treatments and interventions will help. Our charge is to look at the past year and up to the past five years of what research has been done, funded and their outcome. Then make recommendations for the next strategic plan. Now, there has been hundreds of research done for tons of various therapies and interventions. However, what I find it so frustrating as a public member is the huge disconnect between Federal agencies, researchers and families on the ground.
What do I mean by that? Well – let’s dig deeper.
Let’s say your child was just diagnosed with autism and you ask the doctor – Doctor tell me which therapies or interventions will help my son for his type of autism and has a conclusive rigorous research and proof? Guess what that doctor will tell you – well there are lots of things out there and there is not really one or even two that I can tell you that will work for sure. It is a trial and error. Try this or that and let’s see how it goes.
In 2013 and in America, that is both disappointing and frustrating especially after millions of dollars and decades later. We need to have specific treatments and interventions that we can tell parents to seek. In other words, right now there is no one size fits all.
ABA might be the only one that many children respond well to & learn from, but even that the research is for younger kids. Even though I have seen it help older kids, but usually parents have to fight hard to get it. And, for minority and low income kids – it is even worse.
Some in the group also had concerns the imbalance of the funding as well as the sheer number of them and not enough funding for each one of them. My concern was there are not enough rigorous research for nonverbal autistic kids in how to teach them to communicate. For example, there ere few device research, but not a lot of or any actually for teaching these kids other means such as RPM or through the written word.
25% of children with autism have nonverbal autism and the fact that we are still lacking and behind in addressing their needs is depressing and wrong.
Our next step is to recommend different and better recommendations to U.S HHS Secretary, the Administration and Congress. I plan to fight for nonverbal children to get better treatments and interventions.
Above opinions and words are mine and do not reflect IACC or any committee. Below is the link to this meeting which was public and anyone can listen to the audio or read the transcript and materials we viewed.
Thanks!
Idil – Somali Autism Mom & Minority Advocate