By Katie Wright
Sorry everyone that this IACC post is so late. I honestly had a tough time getting through all 6 hours.
At the previous IACC meeting Lori MacIlwain and Wendy Fournier of the NAA made a devastating presentation about ASD child mortality. An incredibly brave Mom, Mrs. Sheila Medlam spoke so eloquently about her child’s death due to wandering. Shelia spoke for so many of us when she described how quickly an ASD child can disappear. Her son, like mine, had no awareness of danger and almost no safety instincts. To make matters worse, nonverbal ASD children are highly impulsive and cannot respond when searchers are calling their names. Mrs. Medlam urged the committee to make safety an IACC priority- particularly by providing interested families with potential life saving track devices and to aid in the support and training of first responders, teachers and other community service providers.
It seems like we read about the tragic death of an autistic child on a weekly basis. As Geri Dawson pointed out these children had good parents, responsible care givers, it is extremely difficult to keep these children safe literally every moment of the day and night. These families need our help. This should be an EASY issue for IACC to support. I mean does it get more black and white than choosing to do something or choosing not to do something to help prevent horrible tragedies?
But among certain IACC members common sense and compassion is in sort supply. I was astounded that a parent of an ASD adult, like Ms. Ellen Blackwell did not support this measure. I imagine her son is verbal and relatively high functioning but surely she must understand that most ASD children are not so fortunate? Ellen insisted on muddying the waters by demanding wandering prevention to be linked with the ending of the use of restraints. This is a valid objective but a different one. I was astonished at Ms. Blackwell’s continual nitpicking of the wandering provision and her refusal to support this measure. Shameful.
Ari Ne’Man is just 22. He is a brilliant young man. But he is not a parent and has never felt the awesome responsibility of parenting and protecting a child with a form of autism so disabling, so unlike his own. Ari does a great job advocating for the interests of his community but I think his intransience on this issue was both hurtful and unnecessary.
A major criticism of the neurodiversity movement is that its members lack compassion and understanding for children who are severely and medically affected by autism. This was an opportunity for Ari to prove to the community of families that he “gets it” by supporting this issue- so central to the lives of families with severely affected children.
Both Lyn Redwood, Alison Singer and Geri Dawson tried to break down the opposition and help IACC members understand the bigger picture, the urgency of this issue. Once again I was so disappointed that other public members did not express more vocal support for this measure. Too many IACC members were a brick wall of resistance.
I saw a new face at IACC Sharon Lewis. Lewis was positively hostile towards the wandering prevention program. Ms. Lewis does not represent the public; she is neither the parent of an autistic child, a medical professional, a clinician, an expert in autism, or a person current on clinical issues affecting the ASD population. Why is she there?
Ms. Lewis strongly advocated “stepping back” and doing more “research” on wandering deaths before supporting anti wandering programs because “we don’t know enough.” OK, what is there is know Ms. Lewis? How is this complicated? Autistic children are incredibly impulsive and lack an appropriate awareness of danger. This is a terrible combination. Autistic children are dying despite the best efforts of so many families to keep them safe. Let’s do something about it. Let’s help provide families with tracking devices or alarms for their homes. Why does Ms. Lewis insist on “stepping back,” why not “step forward?”
Sharon Lewis did not even attend the previous IACC meeting. Ms. Lewis did not even hear Mrs. Medlam’s presentation, yet feels very strongly that this measure is not needed. Does Ms. Lewis know anything about life for a nonverbal severely affected child with autism? If she does Ms. Lewis is cruel, if not she is irresponsible.
Lee Grossman is also on the safety subcommittee but rarely participates in the meetings.
This brings me to another point. Please do not accept an IACC public seat if you cannot show up for the meetings. We already must deal with continual absences from ISCC federal members who Our families have such a small voice as it is. We need our public members to be present and contributing at meetings. Don’t waste a public member seat. Being on the phone is not the same as attending in person. In fact the phone process is a nuisance for all involved. The cell connections are often inaudible and too much time is wasted up trying to decipher what the caller has said. Public members Dr. Gerry Fischbach of the Simons Institute, Lee Grossman of ASA and Denise Resnick of SARCC all attended the meeting by telephone and not for the first time. Dr. Yvette Janvier , who almost never takes her seat at all and represents no constituency, did not attend, period.
I would like to remind Dr. Francis Collins that Wendy Fournier, president of the NAA and representative of 14,000 families, Becky Estep of TACA and representative of 16,000 families and Jane Johnson president of the Autism Research Institute serving tens of thousands of families, are ready to take those public seats and commit to attending all IACC meetings.
I don’t understand the priorities of so many IACC members. Ellen Blackwell and Walter Koroshetz expended so much of the committee’s time discussing the Strategic Plan’s language. Will it be smooth and “prose like?” Who cares about prose if IACC isn’t interested in doing something to prevent child mortality? Ms. Blackwell wastes so much time quibbling over minutiae: typos, punctuation errors and meaningless details.
It was good to see IACC taking up the issue of the Somali ASD cluster in Minneapolis. Autism Speaks and the CDC will be conducting a population surveillance study. Dr. Geri Dawson spearheaded this initiative due to public demand. It physically pains me that ASD families have to finance this work but we must get started. Certainly our community would rather pay to begin the research than delay this important study any further. Dr. Boyle spoke about the current federal limits on funding and stated something to the effect that AS does not have that problem. Ha! As if AS’ money falls from the heavens. Dr. Boyle needs to understand the money she will be spending comes directly from autism families. Through their sacrifice and hard work Boyle will be able to begin a study the CDC should have begun 3 years ago.
Finally Dr. Alan Guttmacher gave a bizarre speech about studying prenatal diagnoses and termination options. I know Dr. Guttmacher was only laying out the issues certainly not advocating for ASD prenatal termination. However I found the whole discussion utterly depressing. On and on about Downs Syndrome, dwarfism and CF- all single gene genetic disorders that have nothing to do with autism! I hate the feeling that the NIH is giving up so easily on our kids.
I would not dream of telling parents whether or not to terminate babies with Downs Syndrome or dwarfism - although the vast majority do. However, autism is NOT a single gene disorder and is rather, in many cases, an environmentally triggered disease. Why do IACC members so rarely discuss or prioritize these environmental factors causing autism? Why in the last NIH funding round for ASD research did environmental science comprise approx 10% of the total? Why is it so often only Lyn Redwood pushing and prodding for more biomedical and environmental research? IACC’s emphasis on preventing regression or the biomedical manifestation of autism seems minimal compared to the weight of the discussion given to genetic testing. We desperately need more parents and competent clinicians around that table to represent our children.
Are you listening Dr. Collins?
Katie Wright is a Contributing Editor to Age of Autism.