I almost feel sorry for Dr. Bruce Cuthbert, almost…Clearly Dr. Cuthbert has no idea what he was taking on with IACC. Cuthbert lacks the urgency our families feel and spent an inordinate amount of time on administrative details. He already has Dr. Daniel’s extroadinary team organizing these meetings. No need to re-invent the wheel. Instead of giving each member 5 minutes to talk about themselves, autism families would have preferred to hear about each IACC member’s constituency and their top research priorities plus ideas about closing gaps. Be practical!
1) There has been no IACC meeting for 15 months.
2) That is inexcusable, period, end of story, full stop.
3) Dr. Insel chose to ignore his IACC duties for over a year.
4) Nominations for IACC committee members were submitted in a timely fashion (at least by me and almost everyone I know) over 1 year ago! Cuthbert should have apologized, sincerely and repeatedly for the NIH’s failure to hold an IACC meeting for over a year.
5) Instead of taking responsibility Cuthbert said that IACC has not met in 15 months “because these things take time.” No you and Dr. Insel wasted time Dr. Cuthbert. You both clearly wasted a great deal of time.
Then we heard from Dr. Francis Collins. Cuthbert profusely thanked Collins for “attending.” Please, don’t do us any favors Dr. Collins. Collins “attends” one IACC meeting a year by arriving just in time to give a 5 minute speech and then leaving immediately afterwards. That isn’t “attending” it is delivering a short lecture and allowing no Q & A.
Collins has zero understanding of the autism community and was not interested enough to stay an hour to hear from ASD families. Instead of addressing issues families care deeply about, such as the catastrophic rise of ASD, vastly under researched environmental triggers or the failure for the NIH to make any treatment progress over 25 yrs, Collins gave a lecture on the BRAIN initiative. The BRAIN project is basically a study in tool making for brain science. It is not researching any treatments or addressing prevention in any way. This project on tool making will have zero impact on my child and yours, it will not uncover 1 causation factor, nor will it prevent or cure one case of autism.
I am SO Brain Initatived Out! The hype is insane. Total academic self-stimulation. If Collins really understood autism and cared about our families he would know that it is the Microbiome Project that IS actually relevant to our families and offers tremendous here and now value. The Microbiome Project offers almost infinite here and now opportunities to both prevent severe autism and help those suffering with GI problems NOW.
After Collins we heard from all IACC members. I believe the limit of IACC service for an individual is 8 yrs? Someone correct me if I am wrong. Alison Singer of the small Autism Science Foundation has just been re-appointed for her 9th yr of service. The time limit is there for a reason- to give other orgs a chance to sit in those public seats. Additionally ASF has a tiny ASD family base. I am unaware of any services ASF offers families. ASF is primarily a research org funding genetic and early ID science. Yet, those are the two most overfunded areas in the entire NIH ASD research portfolio. All the more reason the NIH should be diversifying the IACC public membership by including organizations that represent gap areas of autism research.
The National Autism Association has about 12,000 members. The NAA offers a myriad of services, personal family support, direct assistance with wandering prevention and a huge 5-day medical and educational conference for ASD families. Wendy Fournier, the NAA president pioneered anti-wandering work and crated the first coalitions. Fournier created the first anti-wandering program, The Big Red Safety Box. It is absurd that, despite being nominated 10 yrs in a row, Wendy has not been allotted an IACC seat.
SafeMinds is an org compromised of 5,000 ASD families. SafeMinds fills a gigantic gap in the ASD science landscape by being the only autism organization SOLELY devoted to enviro research. TACA has over 10,000 members and provides numerous advocacy and mentoring services to families as well as an incredible biomedical and educational (IEPs, insurance workshops…) conferences. THESE orgs deserve seats at the IACC table.
Dr. Rob Ring….The autism community’s disappointment with this man never ceases. Ring wanted that seat, sought that seat, purportedly to represent AS families, NOT the community of geneticists. Can someone remind him of this? Ring asked no questions and basically said nothing other than a boilerplate 2-minute science speech. Dr. Ring you are there to ACTIVELY participate and advocate on behalf of families, not just to take up space.
Not long ago Dr Ring twittered: “anecdotes do not equal data,” a not so subtle swipe towards all those pesky ASD parents who tried (and failed) to share their stories about their kid’s autism with him. One imagines Ring in a “Master Thespian” like setting, on a throne of some sort, wearing a smoking jacket with a pipe in the hand which he uses to angrily gesticulate that ASD family anecdotes are worthless and only scientists can understand autism! Anecdotes are worthless!!
Ring, do us all a favor and take a page out of John Elder Robsion’s book. Robison was magnificent! Please watch him on the IACC video! Elder made an impassioned speech about the need for IACC to better incorporate consumer research priorities into their Strategic Plan. John spoke about how he was so personally affected by reading all the public comments. Elder gave many wonderful examples of low hanging research fruit that IACC should immediately incorporate into the Strategic Plan: treatment of GI disease, seizures, sensory disorders…etc. John spoke about the complete loss of credibility IACC has with ASD community if IACC continues to ignore the public’s demands. I am so grateful to John and look forward to hearing from him at IACC meetings.
Carolyn Gammiccha and Cassandra Oldham and Lisa Weiderlight are three autism Moms who submitted testimony during the public comment period. They were phenomenal. I watched them in awe, applauding for them in front of my computer screen.
Cassandra (2:42) spoke so bravely and eloquently about severe autism and how people with severe autism and their families have been ignored and ill served by the NIH. She was brilliantly courageous and heart breakingly honest. Thank you Cassandra for speaking for my family as well.
Carolyn addressed the failure of the NIH to give seats to the biggest ASD consumer orgs other than Autism Speaks, specifically: Talk About Curing Autism and the National Autism Assoc. She asked why so many seats were allotted to ASF board members (3). Carolyn argued that the ASF board member IACC reps are geneticists and psychologists who are already an over represented group. Meanwhile IACC does not reflect the reality. In the vast majority of ASD cases autism is not a genetic disorder but an idiopathic complex biomedical disease affecting the CNS, the immune system and the gut. IACC needs fewer geneticists and more experts in medical autism and environmental science.
Lisa Weiderlight, an autism Mom and president of SafeMinds, presented IACC with a step-by-step guide towards making IACC more inclusive, productive and relevant. Dr. Cuthbert, stop with the administrative discussions. Instead print out Lisa’s public comments, distribute her directives to IACC members, divvy up the bullet point assignments and get going! If IACC leadership followed Lisa’s plan something truly meaningful for our families would actually be achieved.
I cannot bear it, if instead, IACC spends yet another year blowing $50 million on early ID and early behavioral intervention research. We are not going to early diagnose our way out of this nightmare. Even with an excellent early intervention only 17% of ASD lose their diagnosis. We have been putting all our eggs into this overhyped basket for too long. Early behavioral interventions are highly effective for kids already HF to begin with. There are 11,000 studies on learning the signs and early intervention. That is enough..
IACC needs to move on and invest in comprehensive environmental prevention science and biomedical autism research and treatment trials- not just behavioral or eye gazing. Shamefully, Dr. Insel and the NIH are stuck in the past, continually rejecting all IACC nominations for GI specialists, immunologists researchers/ clinicians and environmental science nominees in favor of same old geneticists and psychologists.
Why on earth does James Bell have a seat? Yes he was involved with an autism org many yrs ago but now he only represents his own consulting agency? Bell contributed so little last year and has no constituency. The NAA or TACA is much more deserving of that seat.
Why did David Mandell accept a seat if he was not prepared to attend the one and ONLY IACC meeting of 2015?
Finally there are too many government workers in public seats. I worry that they will be exceptionally undemanding and compliant public members. Maybe I am wrong, time will tell. Our community is suffering because the NIH has made so many ill-conceived and deadend research investments. There is almost no accountability and a tremendous lack of urgency regarding autism at the NIH. It took 15 months to hold a meeting! IACC should be having at least 4 meetings a year. As a result the autism community needs active public participants who really know the community, the science and the gaps in the research.
Part 2 of this post will address the other incredible public speakers that represented our families so beautifully and provided the IACC panel with a valuable education.
Katie Wright is Contributing Editor to Age of Autism.