As we all heard by now, GAO has done a report on Autism and Federal Activities including IACC. And, depending how you read this report – you either really ran with it or you saw it as I did. I saw this report from the lenses of a regular autism mom. We can all improve in autism research and in every area. It said autism research had the potential to be duplicative and some just ran and ran with it without regard to scientific research. Then they went to Congress with it and we all know Congress is good at putting on a show.
First, let’s explain why Rep Issa is all of the sudden interested in autism. Rep Issa has never authored or cared about autism issues until one of the members in his committee who was retiring in 2012 requested an autism hearing. Hence, the fall 2012 autism hearing in Issa’s committee. Then according to autism blogs and chats – Rep Issa took $40,000 from some wealthy autism parents – some of whom are from Minnesota. Then the game changed and autism became Rep issa’s interesting project.
2nd, in order for any research to drive policy or medicine – it must be replicated and duplicated. For example, advocates say ABA must be covered by insurance because it has replicated and duplicated research. Get it – duplicated and replicated scientific research drives policy. Otherwise, policy makers would not approve nor will payers pay. Therefore, autism research must be duplicated and replicated. Thus, autism research should not have the potential to be duplicative, but should be duplicated by multiple agencies and researchers to see if the outcome/results are the same, varied or changed, etc. Sometimes a messy and uncoordinated scientific research finds the answers. I am no scientist nor play one anywhere, but as a policy advocate I depend on replicated and duplicated research to move a policy idea.
3rd, Do we need more environmental research looking into autism cause – Heck yes. But this does not mean we should eliminate what little we have and make Congress make a fool of our autism community. Yes, we are now the fools – we have children who need medical attention and we are too busy picking and working against each-other. What does that say about us who are suppose to be the adults in this. Think about it.
4th, GAO works for Congress and they are the ones that asked them to look into this and picking or belittling Dr. Cross is not the answer. Speaking of waste – imagine if GAO was asked to look into autism and racial disparity and HRSA’s role in it. That would be an interesting report.
5th, Dr. Insel has done more for autism than anyone else and I still can’t figure out how he remains so calm. Insel has said time and time again parents are on fire and need help now. He said we need more environment research, he is part of the newly planning group on co-conditions of autism. I am sorry, but NIMH is not just about autism rather all mental health conditions in the country and Insel talks more about autism than any other mental health disorder. We can’t keep biting the hand that has helped us. I for one stand behind and support Dr. Insel 100%. And, no it is not because I am on the IACC – I was just a regular mom when NIMH and IACC coordinated Somali autism research. So, give me a break and stop saying IACC does not coordinate.
6th, IACC does not do research nor fund it. They recommend and yes the process can improve. IACC can write new objectives that reflect today’s autism needs because some of the 78 objectives that are now there are outdated and must be updated. So, of course – there is room for improvement in better and targeted objectives. There is room for adding more federal agencies that fund or do autism research into IACC coordinating efforts. There is more room to put out more funding opportunities for racial disparity, adults, teens, environmental toxins and how they affect different genes, why certain ethnicities are higher or have more profound autism symptoms, better housing, better and targeted employment for all autism individuals across the spectrum, etc and etc. But to call and ask Congress to kill the only autism legislation we have is irresponsible and wrong. We need to improve not eliminate. Gee I wonder where I heard that before.
7th, I would say to those that are soooo interested in vaccine research and don’t believe what has been done thus far – to put their money where their mouth is and fund it themselves. If you all think what has been done is inadequate then do it yourself – many of you are wealthy and can fund it. So, why not. Instead of eliminating what little autism has. Don’t get me wrong because I totally understand when your child is developing just fine and you do something then his development changes or he loses the skills he had. I get the natural instinct to make the connection. This is why many in our community are choosing to skip vaccines and the best MN state health dept can do is scare parents with measles which is like scaring Joe Fraser with a toddler punch. So, yes we as a nation need better way to outreach to parents whose children regressed and do rigorous research on what other environmental factors are involved. Nevertheless, I still don’t think eliminating what little we have in Federal autism is the answer. We need to be strategically smart.
8th, I am not sure why we are picking on President Obama. He announced $100 million for brain research including autism on world autism day with NIH director. Obama is not a researcher and has put autism on the front burner. Plus ACA took off pre-existing condition, again biting the hand that has helped us is irresponsible.
9th, One of the committee members said yesterday @ the hearing – Aids and Cancer have more funding than autism even though more people are affected with autism because they are united and have better lobbyist. Why can’t our autism community unite and lobby together.
10, Finally, a community divid
ed is a community lost & not funded, and the very children we are trying to help suffer the most. Please think about your actions before you take them – millions can be affected by them. Let’s unite for all ASD kids, adults and families. And, let’s not scare off researchers or policy makers.
The Hill had a story on autism feud:
LBRB blogged about this as well among many others.
Thanks!
Above words do not reflect any committee, agency or candidate.
Idil – Somali Autism Mom & Minority Advocate