The Federal Interagency Autism Coordinating Committee’s planning sub group for questions five and six of the national autism strategic plan met via phone conference on September 30th, 2013.
I am on this sub-group and our co chairs are Denise and David whom I have so much respect for and admire their approach of everyone has a voice even if we disagree and it is done transparently and openly for all to see and hear their votes and voices. How simple, yet so refreshing.
Question five states – where do I turn for services?
That is such an important question for parents and families. In other words, when your child is diagnosed with autism – there must and should be easy to understand avenues to get services and resources to maximize his/her potential.
To explain this a little deeper – each question of the plan usually has several objectives which then sort of drive the various research done by usually Federal government agencies or private funders. This can vary from few million dollars of research to hundreds of millions of dollars of autism research. The goal here is to have enough concrete and hard core double blind studies & for sure outcome. So that parents and families know exactly where to turn for services regardless of if they have private or public insurance. Regardless of where their child is on the autism spectrum. And, most importantly regardless of what state, district, county or city they live.
Where to turn for services should be easy, accessible and affordable. This is the ultimate goal.
So, if you look at the research done and the hundreds of millions of dollars spent so far – we are closer, but nothing to write home about is my humble little opinion.
For example, one of the area that I am very much interested is decreasing and eliminating autism disparity for racially and ethnic communities and there has not been enough or even close research to train and educate therapist of color from minority communities. There are not enough minority autism researchers, teachers, speech therapist, OT therapist, behavior therapist and psychologist. Nor is there a good objective asking that under question 5 which is how research is driven.
In my opinion, if more professionals reflected the children and communities they were serving, there would be less mis-understandings, a lot less bias (intentional or not) a lot less confusion and more understanding and better outcome/results for children and families of color.
Training and educating minorities to be autism professionals is a must and a needed necessity. Yet, very little funds for research has been done by both the government and private entities. I think when you have 10 whites talk about racial and ethnic disparity then that in itself is a huge problem. It is like 10 men talking about women and childbirth. It just does not mix well and I am noticing this dis-connect in both state and federal level. This kind of tactic which has not worked for years and decades must change and change must be demanded persistently, if we are really serious about autism disparity.
It is sort of like which comes first the chicken or the egg. There are not enough minority autism professionals. Therefore, those talking about it are not them. But then how do you get them to be at the table if they are not intentionally recruited and trained – right? The million dollar question here.
I am hoping for this next year and beyond – there will be more intentional and recruiting of autism professionals that will reflect autism faces and families in this country. Otherwise, disparity will not end at all.
The other question six is – what does the future hold for adults with autism. This is probably an area that everyone at IACC agrees we need to do more. There is usually less than 1% total funding used for autistic adults and research or even training. In other words, these children do grow up and become adults and I really think as a society, we are not ready for a tsunami that is about to hit.
For more information on question five of the national strategic plan, click here:
And, more information on what has been done for question six, click here:
For more in depth and detailed information on research and funding, click here:
As usual, above words are my opinions and do not reflect IACC or any autism committee.
Thanks!
Idil – Somali Autism Mom and Minority Advocate