By Katie Wright
No matter who you voted for in the last last election the take away message was unambiguous. Americans literally do not feel heard by our government. So guess what the new IACC Director just decided to do? In an incredibly ironic, tone deaf and boneheaded move, Dr. Joshua Gordon decided to take away the people’s right to speak at IACC public comment. That’s right. So for to those Americans affected by autism who do not feel heard or that the federal government doesn’t care about your kid - you’re not crazy. The federal government really, really does not want to hear from you.
To be specific Dr. Gordon decided to limit stakeholders to one public comment a year. That’s it. This move is foolish and unfair for many reasons. Number one, it only serves to reinforce the belief that IACC is completely uninterested in your family and your autism organization. As it stands, NIH leaders refuse, absolutely refuse, to appoint IACC nominees who truly represent actual large national autism interest groups (TACA, NAA...). Instead the NIH gives those few public IACC seats to members of an Aspergers comedy troupe, assistant-assistant professors (who are not ASD parents) of small colleges no one knows, numerous random people representing no organization at all who rarely show up and finally, masquerading as members of the “public,” NIH employees who are ASD parents but never say a word. The only chance large national groups have to be heard is during the brief public comment period.
There are no seats at IACC for those with severe autism. Indeed, severely affected children like mine cannot speak and require 24/7 care. Arranging time off work or paying the extra care taking required for a severely affected ASD child so a parent can travel (on their own dime) to an IACC meeting is a herculean task. Therefore, autism families rely on our leaders to speak for our children in D.C. and at IACC. It is bad enough that the NIH refuses to give public seats to NAA or TACA or SafeMinds but now they limited our tens of thousands of ASD families to no more than 2 minutes of representation a year? SafeMinds has members all over the country but few can travel. Lisa Wiederlight, our president, is our designated IACC speaker in part because she resides in Maryland. We have complete confidence in Ms. Wiederlight’s expertise on both the science and service issues important to our members. We do not want Lisa limited to speaking about our issues once a year. TACA is located in California. It’s virtually impossible for various CA ASD Moms and Dads to appear in person at IACC. However, they can help subsidize a trip for the organization president to speak more than once if members deem this necessary. One of the most moving IACC speakers I have ever heard is NAA president Wendy Fournier. NAA members want Ms. Founier is able to communicate their needs whenever necessary. Yet Wendy should be limited to 1 two minute slot a year?
Listen, I know that not all public commenters are brilliant and enlightening. I’ve sat through some head scratchers, I get it. They can't all be winners, but that is OK. Believe me, autism families have sat through hundreds of hours of useless IACC talk. The very least IACC can do is welcome ASD community members who make the trip to for the opportunity to be heard, however briefly. Sure, if IACC members were working for IBM they would not have to sit through live public criticisms of their job performance. No, instead almost all of them would have been fired years ago due to poor work performance. Just imagine this group having to be accountable to a private sector employer! Given the fact that IACC’s performance and the NIH autism team have succeeded in alienating and angering most of the it’s constituents, all federal IACC members would be unemployed.
This inane restriction is the responsibility of Dr. Gordon and the IACC panel. Dr. Susan Daniels and her team does an excellent job organizing all meetings and making materials accessible to the public. A detailed agenda for every meetings and bios for every presenter is available in advance of everymeeting and all earlier IACC meetings are well archived and available to all who wish to view them. The operations aspect of IACC is well functioning and transparent. The problem is the leadership. It is not Dr. Daniels’ responsibility to limit speaker’s times, it is Dr.Gordon’s. Rather than waving his hands and saying, “it’s just too hard to keep public speakers to the allotted time limit,” Gordon needs to do his job and make it clear to commenters that their speech will be stopped, politely, but firmly, stopped after two minutes. It is called running meeting and it is the chair’s job.
Let’s talk about what was so very important at the most recent IACC meetings necessitating the truncation of the public comment period. First we heard from Autism Speaks’ President Angela Geiger. Ms. Geiger has been the CEO for one year but has kept a very low profile, I suppose because of the dormant nature of AS Science. Incredibly, it has taken Ms. Geiger 11 months to settle upon a Chief Scientific Officer! I realize AS was burned by the previous CSO, Dr. Rob Ring. Ring was promoted from within AS without even a cursory search effort and this was a gigantic mistake. Dr. Ring was temperamentally and professionally ill-suited for this critically important job and the organization suffered terribly during his tenure. Ok, so don’t hire someone right away but should it take 11 months to find a qualified candidate? Would such paralytic leadership be tolerated in the private sector, absolutely not.
Ms. Geiger spoke for about 15 minutes about AS’ direction. AS intends to focus more young adult and adult issues, which was great to hear. However, few specifics were given. AS wants to decrease the age of diagnosis. We’ve been hearing about that for 13 years, but fine. Geiger spoke about AS supporting “cutting edge science,” absolutely no details. More talk about “journeys, transformations, growth, change, evolving, access to solutions, improving transitioning, partnering, negotiating solutions, having open arms.....” you get the picture. Oh, and I don’t believe I am alone in not wanting hear one more promise about “personalized medicine” EVER.
Autism families are so tired of meaningless empty promises, time to get down to earth and be specific. Ms. Geiger offered dozens and dozens of euphemisms for change but after a year in the wilderness AS leadership needs to get very specific with families about the science it intends to support.
A few IACC members asked about the supposed “scientific breakthroughs” in the AS pipeline. Ms. Geiger replied that she is “not a scientist.” Ms. Geiger that is not an acceptable answer. You are an extremely high paid CEO who has had one year to educate yourself, full time, on autism science- time to be an expert. Come on, no excuses. Do you think all autism moms and dads went to medical school? No, we stayed awake night after night to read medical journals, environmental science studies, GI research, books about auto-inflammatory disease, study after study on nutrition. And you know what else? We did this while caring for ASD kids and/or having a job outside of the home. Ms. Geiger time to get busy and hit the books like the rest of us, but do not limit yourself to the stagnant and dated “genes + behavior” CDC /NIH science like the rest of AS Science has. You must read widely on toxicology, metabolic science, the micro biome, PANDAS, gut permeability, autoimmune disease, etc...to really understand autism science and to, most importantly, offer people suffering with autism the real help they need and deserve. Read Herbert, Deth, Jyounchi, Hertz-Picciotto, Krisgman, Van Der Water, Usman, Rossignol, J. Adams, Exley, Tomljenovic, Nevison, Dhurjati, Marabotti, Mezzelani, Mustafa.
The second and more lengthy presentation ( one hour!) was given by Dr. Sam Odom of UNC, regarding ABA teaching modules. I am sure Dr. Odom is a smart and dedicated researcher but his presentation was interminable and taught us nothing new. Odom leads a multi-million dollar NIH project geared towards educating child care workers about autism teaching techniques. The presentation about the basics of ABA should have been condensed into 10 minutes. The remaining 50 minutes should have been dedicated to public comment or a speaker with relevant and NOVEL science to share.
Dr. Gordon you need to know that IACC public commenters are tax payers, citizens and your equal in every way. Dr. Gordon you do not have the right to tell the autism community that their leaders can speak only once a year. It was horrible, but not surprising given the largely unrepresentative membership of IACC, that not one IACC member spoke up against this undemocratic ruling. Dr. James Battey, who has taken up space on the committee for 10 years and contributed almost nothing said that he did not like the repetitiveness of public comments because “we are smart people and remember things.” No, Dr. Battey the committee does not seem to remember anything the members of the public asks you to do- whether it be fund biomedical treatment research or meaningful environmental science. Dr. Battey you and your colleagues suddenly have amnesia whenever it is time to write your Strategic Plan - which reflects academia’s needs and wants not the autism families you should be serving.
Believe me Dr. Gordon and Dr. Battey, public comment is the very least of IACC’s problems. Instead of limiting the number the of comments the public may make I advise you to welcome all and take copious notes throughout in order to create better Strategic Plans.
Katie Wright is Contributing Editor to Age of Autism.