By Katie Wright
Instead, Secretary Sebelius opted to appoint 2 MORE representatives of the High Functioning ASD community, a representative of the genetics only research center, Dr. Dawson (who reclaimed Autism Speaks’ seat), and Denise Resnick of SARCC, Mom and co founder of SARCC.
My intention is not to argue for the removal anyone from IACC, only to illustrate why the deliberate exclusion of the NAA and TACA is so egregious. Our severely affected and medically affected children are already so poorly represented. Only ONE, out of 20, IACC members has any significant experience with biomedical research and treatment issues affecting our children. Most of the federal members’ main interest is early diagnosis. That is the easy part! 95% of the work comes after the diagnosis. Our kids need better services, more therapists, medical help, schools and more intervention research.
It is now estimated that approximately 40% of children regress into autism, and that % has been increasing at an alarming rate. Linda Birbaum informed IACC about an ongoing study that found that 50% of parents report seeing a definite regression into autism. Last week’s ATN study found that 50% of ASD children have serious GI problems, that % is even higher among regressive kids. Our children are mainly nonverbal and cannot participate on IACC like Ari Ne'eman or Stephen Shore. IACC has three public members specializing in advocating for the needs of high functioning community, but only one for the severely and medically affected autistic children. Considering the fact that severely affected and regressive children are often living in pain and have the absolute worst long term prognosis, the omission of Wendy and Becky is indefensible.
Ms. Denise Resnick is an accomplished professional in advocacy, awareness, public/private collaborations and adult services. Denise should have been chosen as chairperson of the services committee. She excels at everything having to do with adult services, advocacy and awareness. Ms. Resnick is an amazing parent of an affected young man. However, her main focus is not environmental research, regression, GI disease or biomedical research and treatment. Those are the issues Wendy and Becky represent.
The commitment required to be on IACC is intense. It is beyond tough to make every meeting, but you need to be there or say no thanks. Unfortunately, Ms. Resnick was unable to take her seat, as the parent rep., for the Strategic Plan subcommittee meetings. Nor could she attend the NIH community meeting or the first IACC meeting.
Frankly I do not understand why Secretary Sebelius heaped such praise on the committee. Has she even read the public feedback? This committee took 2 years to make a strategic plan! I wish Sebelius had instead compelled IACC to operate with a sense of urgency, compassion and openness to new ideas. I really wish Sebelius had appointed a researcher in environmental science and autism to IACC! I suggested everyone from Dr. Isaac Pessah to Dr. Martha Herbert, exquisitely qualified candidates. IACC desperately needs environmental expertise, not more psychiatrists. I have to wonder why Dr. Insel did not suggest this. It is apparent from the choices she made, and did not make, that Secretary Sebelius relies on Insel’s input. Last month Insel gave an interview with David Kirby in which he stressed his belief in the importance of investigating environmental factors, how critical such research is, why we need to conduct more… But it seems such words rarely translate into actions.
Secretary Sebelius and Dr. Collins made some very nice remarks at the beginning of the meeting. I believe they really care about this issue and want to see our children make progress. Dr. Collins especially acknowledged our families’ impatience and the gravity of autism. Both Sebelius and Collins spoke with great optimism about recent Fragile X research, how it is being undertaken, results thusfar. Dr. Insel even started the meeting talking about the “exciting breakthrough in the NYT.” Insel was beyond thrilled. Families in the autism community aren’t holding our breath. While Gardiner Harris, the NYT reporter, waxed ecstatically about Fragile X drugs (as he always does), the actual Fragile X researcher, almost comically, tried to talk Gardiner down saying the trial was only on adults, only 50% showed improvement and that it will be many, many years before they conduct a trial on children.
The researcher seemed to be pleading with Harris to lower his expectations. Meanwhile so many of us with environmentally affected children, whose disease has virtually nothing in common with Fragile X, need help now. So much vitally important short term research is not getting funded because our children barely have a voice on this committee.
During the public input session, no one talked about Fragile X. Jim Moody was asked to read a statement by NAA Board Chairperson Lori McIiwain. Lori wrote about the need to immediately address the horrible spate of recent child deaths. At least a dozen ASD children have died over the past month. These children had good parents. Many ASD children are highly curious, hyperactive and have no awareness of danger, it is impossible for any one human being to watch such a child every second of the day and night. Almost every day the news reports on yet another horrible story about an autistic child wandering off in the span of a minute, only to be found dead days later. Lori’s words broke my heart as she explained that many of the lost children are nonverbal and cannot respond when they hear rescuers calling their name.
These children die alone and terrified.
Certainly all IACC members are deeply disturbed by these deaths, but it was at the top of the agenda for the NAA and Lori McIiwain, leader in the biomedical community and parent of a severely affected, nonverbal boy.
1) Dr. Yvette Janvier- A mysterious “public member.” Doesn’t public membership imply that you represent the public? As one of the few physicians on the committee, Dr. Janvier’s main interest is not the pervasive and severe psychical illnesses affecting autistic children but early intervention, an issue already well covered by the 4 psychologists on the committee.
I am going through hell watching this committee! That is why I won’t stop until decent representation is achieved.
Kareem Dale said it is the White House’s goal that the issue of autism gets the highest level of attention. The attention IACC receives is only going to get more intense given the distressing nature of public appointments.