By Katie Wright
Sharon Lewis continues to astonish me. In the history of IACC I have never before heard from such an insensitive and compassionless member as she. Ms. Lewis, who is not a scientist, not a clinician, not an autism specialist and not the parent of an affected child, represents the the Administration for Developmental Disabilities at HHS. Ms. Lewis is hostile to towards IACC’s proposed letter to Dr. Sebelius alerting her to the alarmingly high rate of child mortality in the ASD community and is opposing an IACC program to prevent ASD child mortality. Yes, you heard correctly, Lewis is against a program to prevent ASD child mortality. The anti-wandering program in question is directed towards the needs of severely affected, often nonverbal children with autism.
Henry Claypool of the federal Office on Disabilities, also does not appear understand this issue or what is at stake. Mr. Claypool argued there is no rush to address wandering deaths now, “because kids don’t die in the wintertime.” OK, Mr. Claypool you need to introduce yourself to the parents of James Delorey. Last year their 7-year-old son went missing and died. James suffered horribly for two days and two nights in frigid temperatures. He was found with a faint heartbeat but later died at the hospital. James probably heard the rescuers calling his name, over and over again- but he was nonverbal he could not respond. In January 2011 alone the media has reported on 8 incidents of missing ASD children. Just because fewer children die in the winter than in the summer, acting now should be less of a priority? However, Mr. Claypool deserves credit for saying he was open-minded to changing his mind. If he would like to talk to AWAARE program founder Lori McIlwain and Wendy Fournier of NAA, I am sure that could be arranged.
Sharon Lewis is not open to changing her mind. Ms. Lewis repeatedly stated that she does not feel that IACC “should elevate” the prevention of wandering deaths of ASD children “at the expense of other issues.” Ms. Lewis please enlighten me, what “other issues” are so much more important than keeping small children from dying? How does combating child mortality come at the expense of “other issues?”
Ms. Lewis went on and on about how she has spoken with hundreds families (not mine!) and people with developmental disabilities and she does not believe the prevention of wandering deaths as a high priority. I really want to ask Dr. Collins and Secretary Sebelius why such an thoughtless human being was appointed to sit on this committee? As if her “reasons” for opposing a simple childhood mortality program were not offensive enough, Ms. Lewis argues that sending this letter to Ms. Sebelius “sends the wrong message.” Why should this issue, rather than so many other issues be brought to Secretary Sebelius’ attention? Maybe because children are dying?
Ms. Lewis has been AWOL throughout the most of the past 12 months of IACC meetings. Suddenly she appeared on the scene apparently determined to make anti- child mortality programs her signature stance. Nice. Ms. Lewis’ related that she has supported HHS spending millions of dollars on “self determination research.” OK ….Ms. Lewis’ group is also sponsoring an 8 million dollar ASD self-determination “clearinghouse” project and collaborating with Ari Ne'eman and others from the nuerodiversity movement. Mainstream autism groups have not been allowed to participate. Why this antipathy towards the of representation those on the severe end of spectrum? I don’t understand.
Lee Grossman was, sadly, again a disappointment. ASA desperately needs new leadership at IACC. First Mr. Grossman describes how his son has wandered, how easily this can happen and how terrifying this is. In the next breath Grossman comes out against sending a letter to Dr. Sebelius about the need for an anti- wandering program. Grossman’s comments were circular in nature and his reasoning impossible to understand. Even if Lee is against the wandering program Grossman could have at least committed to doing something about this issue by actually attending the safety committee meetings. He did not. Mr. Grossman was repeatedly asked to get involved in the AWAARE program and place the information on his website but also declined. I am sure that ASA families would be very disappointed with Mr. Grossman’s actions or non-actions, as the case may be.
Mr. Ne'eman is not a parent and his organization does not represent children or families like mine. Ari advocates waiting and doing more research on the topic of ASD childhood mortality. Ari, our families cannot wait. Ms. Ellen Blackwell has had three years to propose writing and sending an IACC anti-restraints or caregiver cruelty prevention letter to Sebeleius. If Ms. Blackwell would like to do so now I am sure I speak for the entire community in saying we would be 100% behind her efforts. Stopping caregiver abuse and ending the use of restraints is an urgent issue of grave importance. Ari, Ellen and Sharon can craft a letter now and propose it at the next IACC meeting. This is not and and/or situation. It would be best for all if Ari, Ellen and Sharon directed their energies towards a anti- caregiver abuse proposal and stop trying to block an effort to reduce ASD childhood mortality.
This debate was extraordinary lengthy, torturous and so repetitive. Dr. Insel must stop the discussions at some point and ask for a vote. Instead Dr. Insel allowed an endless filibuster by Sharon, Ari and Ellen. Thank you Lyn Redwood, Geri Dawson, Alison Singer, Denise Resnick and a special thank you to Dr. Yvette Janvier who spoke beautifully about how and why her ASD patients need these life saving devices. Dr. Insel, majority rules, send the letter and move on. In the meanwhile I encourage stakeholders to send IACC some feedback regarding the behavior and actions of Ms. Sharon Lewis to Dr. Della Hann, the executive secretary of IACC. Her e-mail is email@example.com.
Katie Wright is Contributing Editor for Age of Autism.