By Katie Wright
A few months ago I wrote to the new Director of the NIH, Dr. Francis Collins, and asked to meet him with my parents, Bob and Suzanne Wright Dr. Collins graciously responded saying that he would very much like to have a meeting with us and some autism organization advocates.
My main reason for the request is because the majority of autism families do not feel heard by IACC nor are they fairly represented among the public members. Only one person of the 20 odd members on the committee has any experience at all with the all too common needs of children like mine, Lyn Redwood. Meanwhile there are committee members from the Dept. of Deafness, Medicaid and Substance Abuse all casting votes for and against (and it is mostly against) important scientific research they cannot possibly understand. This is absurd.
The lack of services for ASD people of all ages is a critical issue facing our community. Expertise in planning group homes, job training or respite care does not translate to scientific knowledge in stem cell research, oxidative stress, gastrointestinal disease or immunology. Obviously the same holds true for the neurologists on the committee regarding their limited insight into special education or adult services.
In this disparate roomful of scientists, parents and aspergers adults, there was agreement on two things: IACC is failing, it moves incredibly slowly, is way too bogged down with bureaucrats, has yet to embrace innovative research and autism organizations are virtually unrepresented. There was also complete agreement that IACC has done a poor job addressing the tremendous and immediate service needs of children and adults affected by ASD. In order to do justice to both autism services and autism research we need to separate IACC into 2 committees: services and research. That way each subject will have a committee staffed by people with the appropriate expertise.
An even better option is to abolish IACC and form a virtual Autism Institute, much like the HIV Institute. That way we would attract federal members with deeper and more current scientific understanding of autism.
One of the most serious problems with IACC is the total absence of clinical specialists. Dr. Yvette Janvier, serves as a “public member.” Last fall, Lyn Redwood was advocating for an investment in GI research after speaking about the recent death of young ASD girl who died due to an untreated impacted bowel. Dr. Janvier’s immediate response was not one of compassion, concern or even respect. No, Janvier literally said, “Phhsssss! Anyone could have diagnosed that! In 20 yrs of (neurology) practice I have never seen a sick ASD child or a child with these ‘immune’ problems!” Javier went on and on about how IACC should not focus on such “rare” problems like GI disease or immune dysfunction.
Such manifest ignorance cannot be tolerated on IACC. Dr. Janvier has never apologized for or retracted her comments, or better yet resign.
Wendy Forunier, president of the National Autism Association, representing 12,000 families, spoke eloquently about the need to start biomedical intervention research NOW. NAA receives hundreds of phone calls from parents in crisis who cannot get medical help for their sick children. Wendy also related how some small yet powerful interventions like B-12 shots, carnitine supplementation or the GFCF diet are helping many children yet these interventions have never been studied by IACC. Dr. Collins appeared to agree that the NIH needs to start funding such research and then asked, “what happens if the research proves the intervention ineffective?” We all said fine! At least we will know! Prove us wrong, prove us right, but prove something! Let’s get immediate need medical intervention research going now.
My Dad, Bob Wright, spoke about the public’s huge private investment in autism research. Autism Speaks’ families all over the country are donating what little money they can spare, getting their community to support walks, raising money any way they can. Wright said that we cannot do this alone and that the NIH needs to respond to autism definitively as a national health emergency. Geri Dawson spoke about AS science and the Autism Treatment Network. This sounds like a great program to educate hospitals about appropriate interventions for medically affected kids.
Becky Estepp, of Talk About Curing Autism also spoke about the struggles her org faces in meeting the needs of its 16,000 member families. So many are in crisis, broke, exhausted, unable to afford or even find appropriate care for their children. Becky said that some ASD families in LA have lost their car and are in desperate straits caring for their sick ASD children. Lee Grossman of ASA said he too receives heart-breaking calls everyday and not one parent has asked, “How close are we on the mouse model?” IACC lacks a sense of urgency and compassion. The federal members are totally disconnected to the needs of our children.
Sadly, many federal members are frequently late or absent to IACC meetings and many seem indifferent about their responsibilities. Many federal members seem to have only the most peripheral knowledge and understanding of autism. Two YEARS into this process, IACC members required an hour and a half tutorial to learn about ABA! Imagine a committee of dermatologists listening to a “cutting edge” lecture, “Lots of sun exposure, good or bad for the skin?” Ridiculous.
Our community deserves better. ASA does a wonderful job advocating for services. However, only Lyn Redwood is focused on funding the necessary research to address the immediate and specific needs of sick children. Why is that? Why has that been tolerated at the NIHM?
I want to apologize to Christine McKee. She is not Tom Insel’s friend or neighbor. Ms. McKee is a hard-working Mom of an affected child. She just applied for an IACC seat and was chosen precisely because she represents no organization. I said to Ms. McKee, nothing personal, but that is outrageous. How does non-involvement in the autism community qualify an individual to represent the autism community? Why would IACC want to choose a “public” representative who does not represent the public? Hmmm, I wonder….
Dr. Collins summed up the meeting very nicely, saying he now has a very different conception of autism as a disease and was distressed to hear how much suffering there is in the community. Dr. Collins spoke sincerely about how his background in genomics by no means precludes his belief that it is crucial to investigate environmental factors and that he is not only a “genetics” guy. Refreshing! At the end of the meeting Wendy, Lyn, Becky and I asked that public seats be allotted to orgs that actually represent the public. NAA, TACA, the Autism Research Institute and Generation Rescue represent hundreds of thousands of families who need to be heard at IACC.
Katie Wright is a Contributing Editor to Age of Autism.