IACC Full Committee Meeting 11/15/2013

There are seven questions to this plan and the committee looked at what research has been done or funded based on each question’s objectives. There are over 70 objectives total – usually a dozen or so for each question that has been funded by a Federal agency or a private organization for the past few years. 

Question Three – What Caused This To Happen & Can it be prevented? – Research on this area:

Each objective has total funding allocated, green means what IACC recommended has been accomplished for funding. Yellow means funding partially met and red means IACC recommendations not met. As you can see this is a snapshot of what has been done and funded or not for autism for the past five years. I am on sub-committee for services, policy and research that oversees questions 5 & 6. 

And my take here is we have done a lot and made huge progress for services especially for younger kids with ASD, and for assuring private insurance pays for it. 

However, for older kids and those with Medicaid – I think we have not made any significant changes or improvements. CMS which administers Medicaid is working on state of the states for ASD services that should be out and presented at IACC early 2014. 

I am glad that Federal agencies and researchers are realizing that more research of why disparity exist and how to address it is needed rather than the usual research of, is there autism disparity. 

YES – There is and we need solutions now. Dr Mandell who is an amazing researcher & Co-Chair for the services, research and policy committee at IACC has told the full committee his take which is exactly my view as a Black autism mom. We all have theories about disparity, but no research has been done to find out why it exists and what methods to use to decrease and eliminate it. So, I am excited about this progress and hope that researchers and autism providers collaborate and send ideas or proposals to NIH, HRSA and other Federal agencies that fund services research. In other words, don’t just wait for a grant to be offered – send ideas and proposals that program officers might not have thought of. They might just like your idea and fund it. 

I always hear this from researchers that they have ideas of research, but no funding. Send your ideas to NIH autism group or HRSA’s autism, etc. I am confident those agencies will listen and consider your proposals and might even fund. How great will that be!

Another outcome I am really excited and waiting for is current research being done by Dr. Amy Wetherby from FSU (one of our invited experts) who is working on different diagnostic tools for minority communities. Personally, I don’t think current methods of diagnostic tools are culturally appropriate tests for our families of color. In order for a child to reach their best outcome & full potential, the testing must be correct and appropriate. 

In terms of question six for adults – if you read the objectives and what research was done or funded. This is the only question where none of the objectives were fully funded. I think this is a huge problem since these young kids do grow up and become adults and we are not ready for that yet. 

I was also on planning group for question 4 and I really think we made significant improvements here because there are lots of choices and treatments available for our kids including ABA and Early Denver Start Model, Technology uses for nonverbal kids and much more. Nevertheless, I think not enough research done for alternative interventions and treatments including nutrition, vitamins, supplements, etc. I also would like to see more research done for symptoms of autism – not just behavior such as sleep, GI, obesity, wandering, safety and sensory. 

I think once we have rigorous research on the symptoms that often accompany autism then we can advocate for policy changes that is needed for children and adults to get adequate interventions and treatments so that they become productive members of society. 

Another area I am interested is question 7 which deals with surveillance. I think we need to have more diverse autism researchers and professionals. We also need to look deeper as to why for the ADDM surveillance system – Utah has the highest ASD numbers and Alabama has the lowest. This is where we get the current ASD rate of 1 in 88. Notice MN is not an ADDM site and less than 1/2 of US states have ADDM surveillance program. I think there are environmental factors as well as other factors that might drive the difference in rates among current ADDM sites. 

One good note here was from one of the invited experts from University of North Carolina Chapel Hill who said the difference for Whites and Blacks were getting to be even out and getting better because I wanted to know if the rate was different for minorities vs non-minorities. According to CDC who funds & monitors the ADDM system in the country – the difference of diagnoses between rural and urban also seems to be getting more even. But they didn’t know why the rate differences in different states. 

In sum, we have come a long way, but have a longer way to go was my take. I also really want to thank of all the parents especially moms that travel miles to come and present during the public com
ment time. It is parents like you that drive change in research and policy. I am very grateful for your comments and views. I would encourage especially Minnesota parents and researchers to send their views and comments since there are hardly any from here or even from Midwest states. IACC represents the whole country – and it would really help to hear from everyone.

Above words are my opinion and do not reflect IACC or any committee.

Idil – Somali Autism Mom & Minority Advocate