Rest easy parents. Autism Kids Don't Die in the Winter time

As always, a great article from 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.

More at Age of Autism: Why Is IACC's Sharon Lewis Against Protecting Against Autism Spectrum Child Mortality?