About a month ago Autism Speaks and the NIEHS held an all day conference on environmental issues and autism research. Sounds great, right? When I learned of this meeting in the planning stages, I was excited. Wow, a conference on ASD/environmental research. This is something that 99% of the autism community could get behind. Great start!
Then I learned that the meeting would be a brain storming session in which AS and NIEHS invited scientists working on other diseases like Parkinsons and MS to discuss opportunities for environmental research for ASD. OK, a little less enthusiastic. We already have SO many amazing autism environmental scientists who rarely/ and/ or /never get heard or funded by the NIEHS or IACC. This could have been a great opportunity for the NIEHS to actually hear from environmental experts working IN autism research! The ground breaking work of Jill James, Irva Hertz-Pinchero, Jane Eldahr, Richard Deth is mostly unknown to NIEHS bureaucrats. I listen to ALL IACC meetings and the only person ever referencing this important body of work is Lyn Redwood.
It isn’t a bad idea to get points of view from those studying other disease, not at all. But why were strangers to autism the main invitees? Although I barely heard any of the meeting- for reasons I will discuss shortly, a lot of time was wasted with well meaning but elementary questions about what is autism, what are the symptoms, how is it treated, who many kids are affected, blah, blah…This is not an effective use of our time or money (this meeting was paid for by our tax dollars as well as families’ contributions to AS). Scientists who wanted to come to this meeting and whose expenses were paid in order to attend, should have shown up knowing the basics. Really, it was the least they could do and the NIEHS should have ensured this by sending the scientists some ASD required reading prior to the meeting.
Now this is what I really do not understand. How long have parents like us been on top of AS and the NIEHS to address environmental issues? It feels like forever, but that’s just me. Anyways, here they were doing something good, actually responding to stakeholders! One would think they would be touting this meeting from the rooftops, plastering it all over every imaginable autism site: The Schafer Report, Age of Autism, The Simons website, Google Alerts and certainly AS. Yes it was good that the NIEHS had a notice on their website but honestly how many of us check that website every day? It hasn’t exactly been a source of inspiration.
I like to think of myself as on top of ASD/ environmental news, but I knew nothing about this meeting. So there I am halfway to Sleepy Hollow taking Christian to see an eye doctor and a parent e-mails me that this meeting is taking place. Great, I think, I had no idea and now I will miss practically the whole thing. I totally could have made Christian’s appt a day earlier, the office is really flexible.
I get home in time to catch the last hour. There were some interesting discussions I would have like to hear more of…but no. I immediately took note that the ONLY parent sitting at the crowded conference table was Lyn Redwood. Then I see a few Moms I kind of recognize sitting in the dark shadows behind the conference table. Laura Bono and Sallie Bernard, easily among the 3 most knowledge people in the room, relegated to the background- off mike, away from the conference table.
How much longer do we have to put up with this insanity? What is wrong with Dr. Lawler and Dr. Birbaum? Why this crazy hostility/fear of real stakeholder inclusion- especially stakeholders who may not agree with them on every issue. I am no scientist but isn’t this what the scientific process is all about? Developing ideas, testing hypothesis and developing different ideas when previous hypotheses fail? OK, it is pretty clear that their research direction thusfar has failed, time to change course.
I called AS and said #1, it is insane why did you did not publicize this meeting and #2 how can I get the DVD? AS immediately realized that their failure to publicize the meeting was as a big mistake and promised to do widely publicize such meetings in the future. OK, fair enough, I can move on, who doesn’t make mistakes?
However, the NIEHS told me that the video of the meeting was “unavailable.” I don’t know how that could be when they recorded the whole thing. For pete’s sake’s do we really have to endure more of this nonsense? I feel like I am dealing with my NT 7 year old when he said that he hasn’t eaten any candy but I see it smeared all over his face. When are Lawler and Birbaum going to make an effort to include stakeholders in the research process? Why this crazy insecure need to keep secrets and keep families (who lobbied so hard to get you this $ in the first place) far away from substantive research discussions? Lawler been at this for many years and made virtually no progress, one would think she would welcome stakeholder input! For God sakes it can’t get any worse at the NIEHS.
I asked AS to please try to get a DVD. They really tried. I checked in daily for over two weeks Dr. Lawler will not hand over that DVD. However, I was told Lawler would make public her summary of the meeting. OK, a giant no thank you to that. This is the United States, not China, we have the right to see this federally funded public meeting for ourselves. I am not interested in the organizers’ review of their own meeting. Why don’t we all do our own tax audits while we are at it? Environmental research is hugely important to me and hundreds of thousands of ASD parents. Hand it over Dr. Lawler.
Katie Wright is Contributing Editor for Age of Autism.