Alright – so, I usually don’t write about autism parents that comment about me during IACC meetings. I understand as an IACC member – I represent them and it is impossible to please everyone and I also understand parent’s frustrations with Federal government’s response to autism.
However, I would like to make an exception to this rule regarding Katie Wright. First, I really admire and respect Katie’s views and feistiness. To give a brief history of Katie to those that might not know her which would be if you are not part of the autism community – Katie is the inspiration that created Autism Speaks. Suzanne and Bob Wright are the founders of Autism Speaks and the parents of Katie whose son has autism. As we all know, Autism Speaks is arguably the most powerful and wealthiest autism advocacy/research organization in the world. Bob Wright among other things was CEO and Chairman of NBC.
Katie also writes for Age of Autism which is an autism blog where she mostly disagrees with Autism Speaks’ research activities. She also comes to IACC meetings as well as most Congressional autism hearings. In other words, Katie is not your typical autism mom. I would say, she is very well connected and has more influence than most of us only dream of.
First anyone to call me nice in any autism committee is really a pleasant surprise. Katie said I was too nice and neutral. Ok, let’s explain that before it goes to my head. She means when it came to vaccines and autism. First of all, I am not a researcher and nor do I play one in IACC or any other committee. 2nd, IACC has directors of every Federal agency responsible for autism from NIH, NIMH, NIEH, CDC, FDA, Dept of Ed, Dept of Defense, CMS, etc and public members including me. As a public member, Secretary of HHS Sebelius appointed me for specific reasons which were about autism and racial disparity which is my passion. 3rd, I have zero desire to go against research or the very person that was kind enough to appoint me. 4th, even if I wanted to – I have to use logic and science which tells us autism is caused by both genetic and environmental triggers which we still don’t know exactly what those are. 5th, if you read my blog – I am only interested in autism therapies, services, nonverbal autism, wandering and fighting racial autism disparity. I have zero interest to question America’s best researchers and public health leaders about autism and vaccines – sorry Katie. I really just don’t.
6th, I understand many Somali autism families blame vaccines for their children’s autism and I blame the Minnesota department of health which has failed our Somali autism community by not doing any autism research that focuses on environmental causes. MDH also failed our community under Dayton administration for its charge of assurance miserably. This however does not mean we go against current science and research even if our state health department is incompetent.
I remember back in 2012 – during one of IACC’s meetings, I met one of Age of Autism’s writers who is also a parent along with Jake who now runs autism investigated blog and they told me to ask about vaccines when Sec Sebelius came. I told them – I was going to be nice and neutral and not piss off the U.S Sec of HHS who just appointed me and I meant it. Plus, even if I asked her a question about vaccines and autism, she would’ve referred my question to NIH, NIMH and CDC directors who were all sitting there and they would’ve cited science and research which says there is no correlation. In other words, I would have wasted my opportunity to ask a question, so instead I asked about autism and racial disparity which again is my passion because no child should get less therapy or services simply because of the color of their skin.
Here is my gentle and friendly advice for you Katie; I don’t think there is another parent in this country that is more well connected or has more influence than you. So, if you don’t agree with the current research, then ask your mom and dad to fund a different one that can link autism to MMR vaccines. Why not put your words and your money in the same place. Better yet, tell your mom and dad to direct Autism Speaks to do a vaccine/MMR and autism study. I am sure you can persuade them.
Finally, if at any time – you want to advocate with me on the issues that I care about including Wandering which I know you care about as well then don’t hesitate to contact me. I would be more than happy to join that effort with you. Oh and I am very impressed and glad that Autism Speaks now has a Community Affairs VP, Ms. Fields who is a person of color. Finally, some color in Autism Speaks leadership, I think that is great!
As usual, above words do not reflect any committee, agency or candidate.
Idil – Somali Autism Mom & Minority Advocate