We had our 2nd full committee meeting via phone conference since the last one was cancelled due to Hurricane Sandy in Washington DC area.
The goal was to finish the national strategic plan for 2012 that will be submitted to the administration and Congress by end of the year. This plan has 7 questions that we tried to update via new research that has taken place nationally/globally in the last 18 months which is when the last Autism update was published.
First, given that we are the Federal Autism Advisory Committee, most members felt compelled to write a press release about the Sandy Hook Massacre in CT since there were speculations the shooter had a form of autism “aspergers“. John Robison volunteered to write which then the rest of the committee voted for it. That is now online at;
After that we listened to one oral public comment from an autism mom and discussed the highlights of the over 100 pages of public comments we got. Then, we started to go through all of the 7 questions in this phone call that lasted from 10am til 3pm, really long phone chat.
Here are the chapter headings;
1. Diagnoses, 2. Biology, 3. Risk Factors, 4. Treatment and Interventions, 5. Services, 6. LifeSpan and 7. Infrastructure and Surveillance.
The final plan will be posted online at NIH website under the IACC section. I was on the subcommittee for questions 5 and 6 (services and lifespan especially adults with autism).
Basically, Autism services are scarce, limited, not a whole lot of research behind them and very confusing and if you are a minority or low income family, it is even worse. The only new research for autism therapy with some research which at best is modest was the EDSM. This seemed to help toddlers when they received up to 20 hours of intensive therapy and up to 5 hours of parent training. That was my take. I was also very much interested in chapters 3 and 7 which talked about risk factors for autism. Obviously, as a Somali autism mom, I think there is a higher risk factor in our community and in other immigrant communities when they migrate to developed nations. There were couple of studies mentioned with the help of committee member Matt Carey which were interesting and you can read them at below links.
The last question was also very interesting for me to discuss because it mentions the Somali Autism Surveillance Study now being conducted by almost non Somali researchers and data collectors which in my humble little opinion is being done to tell us that what we see with our eyes that autism is really really really high in our community is really not true and we are seeing nothing.
This chapter was also to talk about the ADDM Network which I guess is now only 12 states, down from 14 and is where we get the number of 1 in 88 kids in the USA have autism. Think about that, a dozen states have this surveillance system that we reference so much. To make matters worse, some states have the numbers even higher like Utah where the number is 1 in 47 kids have autism. And others have really low like in AL where the number is 1 in 210 kids have autism. Yet, CDC fails to answer a simple a question from IACC members and members of Congress of why are the numbers so high in some states and so low in others? Why is this question so hard for CDC to answer, aren’t they the surveillance experts, the Center for Disease Control and Prevention? how about controlling and preventing autism would be my advice. I think CDC needs to give all of us a candid and honest take of what is happening and why the dramatic increase of autism. I was very disappointed by their explanation of this huge concern for so many.
In sum, I think as the new rookie adviser in this commi
ttee we need to really tackle not just what research tells us which is good and can drive policy, but equally important is what services and resources are now available and/or what can we recommend for the millions of families dealing with autism today and can not wait for some future research.
In addition, we need to take on the other charge of how well are Federal agencies collaborating with each-other for autism services. I think we are failing here for many reasons because there does not seem to be a whole lot of cooperation or collaboration between agencies even within U.S HHS and especially the agencies that provide services and resources.
In my minute and half of advocating I have found out that when you ask a Federal agency a simple question – their usual answer is so vague you get more confused and even a headache. I kid you not, sometimes when I am about to call a Federal agency, I take two tylenol and drink at least two cups of Somali tea because even if I ask – is it snowing outside today which sounds simple – yes or no, but they would say something like “well that is an interesting question and we would be happy to answer it, but right now we don’t have the funds for it, it is not part of our charge, we can’t say it conclusively and my favorite – we are now collaborating with the weather man across the street and we are very excited about that.” uhhhhhh… if you think I am kidding – I am not. Really they can give you a headache.
I always thought state agencies were slow, oh boy was I wrong – Federal agencies make them look like an olympics runner.
Thanks for reading this post.
Idil – Somali Autism Mom.