I hope that as many people as possible in our community watch the IACC meetings. The Office of Autism Research Coordination National Institute of Mental Health makes it easy! This department, directed by Dr. Susan Daniels, provides comprehensive details of every meeting as well as an almost minute-by-minute breakdown of the program. This is tremendously helpful.
Before I get started with the content of the meeting I want to address the major problem of absenteeism. Didn’t Woody Allen say 90% of life is showing up? Well I wish certain IACC members would try actually attending these committee meetings. I don’t think requiring IACC members to come to meetings is setting the bar too high. No one, least of all the public members, are forced to take IACC seats. In early 2011 Director Kathryn Sebelius reminded the committee than many, many, many members of the ASD community would like to serve on IACC. So why did some public members take committee seats if they could not commit to attending just 6 meetings a year?
In 2010 there was a crisis of leadership within IACC. A leading federal IACC member resigned after sending inappropriate notes during meetings. Parents throughout the autism community were frustrated with IACC’s insufficient number of public members. The community was also disappointed with IACC’s failure to address environmental science or biomedical treatment research.
Autism Speaks, SafeMinds, the National Autism Association and TACA were the organizations behind the effort for more IACC accountability and better stakeholder representation.
Dr. Francis Collins graciously invited the entire autism community to the NIH to discuss these issues. The next month Dr. Collins asked Dr. Gerry Fiscbach of the Simons Institute to take an IACC seat. Simons is an academic foundation that conducts brain and gene research only. It does not have a public membership mechanism. Dr. Collins also invited Denise Resnick, ASD parent and director of an Arizona based autism intervention organization, Ari Ne’Man of the HF adult community, Dr. Marjorie Salomon of MIND and Dr. Geri Dawson of Autism Speaks to take IACC seats.
Dr. Collins chose NOT to appoint NAA President, Wendy Fournier or TACA legislative liaison Becky Estepp to IACC. These mothers represent over 30,000 actual ASD families. The sad irony is that it was these mothers who had spearheaded the effort for more public membership seats. The NAA and TACA organizations have nation wide chapters, conduct environmental and biomedical research and provide a tremendous amount of free services to ASD families. In short NAA and TACA are actually representative of the autism community of families.
So how has Sebelius’ picks panned out? Let’s take a look! Dr. Dawson is indeed an active and productive IACC member. Dr. Dawson has attended every meeting and has taken on a great deal of extra work in revitalizing the Strategic Plan. So that’s the good news.
Dr. Fischbach has been absent for at least 3 of the 6 IACC meetings. When not at IACC Fischbach can frequently be found making videos with the president of the Childrens Hospital of Boston in which he argues there is absolutely no autism epidemic. So thanks for that.
Denise Resnick is a caring parent/ advocate within the ASD community. But Ms. Resnick founded and operates 1 autism service organization in 1 state . Ms. Resnick did not attend the meeting with Dr. Collins, nor the first IACC meeting, nor April’s IACC meeting and I believe she missed an additional meeting in between. Ms. Resnick is sometimes on the phone but that not an effective mode of participation. The phone connections are almost impossible to understand and result is no meaningful interaction/ input from the person on the line. We need public members in those seats! Again there are only 4 to 6 meetings a year. People need to show up.
IACC is and should be big commitment. If I was ever offered an IACC seat, I know, lets suspend our disbelief for a second, I could not accept. Public members have a responsibility to a million families to attend ALL meetings AND work diligently behind the scenes ensuring that the Strategic Plan is representative our childrens’ needs as well as the community’s scientific priorities.
I am unclear why psychiatrist Dr. Marjorie Salomon was appointed to IACC. IACC desperately needs the perspective of an ASD clinician, a biomedical researcher, an environmental scientist or a toxicologist. What IACC did not need were more psychologists or psychiatrists. IACC already had that covered - in spades! Dr. Salomon has indeed attended almost all meetings. However, Dr. Salomon says little during meetings and appears unfamiliar with biomedical research as well as the views and concerns of families with autism.
OK, so it is time for Dr. Sebelius and Dr. Collins to start thinking about making some new IACC appointments. The terms of public members are set to expire this year. Let’s hope Dr. Sebelius makes some wiser choices.
Katie Wright is Contributing Editor to Age of Autism.