Why Is IACC's Sharon Lewis Against Protecting Against Autism Spectrum Child Mortality?
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 protected].
Katie Wright is Contributing Editor for Age of Autism.
This is atrocious! If we were talking about corporate America and product liability of one crib or toy, the "powers that be" would be all over this. Guess there's no loss of stock or profits with this issue . . . sickening!!!
Every life is priceless.
Shouldn't just be about product liability, etc.
Posted by: Elaine Hickey | February 19, 2011 at 10:54 AM
Re sharon lewis: Her passion for these issues stems from her personal experience as a parent of three daughters, one of whom experiences an intellectual disability. http://www.oregonmegaconference.org/archive/2009_archive/keynote.html
Posted by: michael framson | February 16, 2011 at 07:26 PM
Folks we're dealing with unmitigated EVIL here.
Posted by: Adam M | February 16, 2011 at 04:34 PM
Lewis and others do not want the cat out of the bag, autism kills.
The leading cause of death among children diagnosed with autism is suffocation and drowning. The leading cause of death among all those diagnosed with autism is seizures.
Our kids are twice as likely to die early than the rest of the population. I read (sorry no link) that the life expectancy of someone diagnosed with autism is way less than the norm. Something like 15-20 years difference.
Autism. 2008 Jul;12(4):403-14.
Mortality and causes of death in autism spectrum disorders: an update.
Mouridsen SE, Brønnum-Hansen H, Rich B, Isager T.
Department of Child and Adolescent Psychiatry, Bispebjerg University Hospital, Copenhagen, Denmark. [email protected]
Abstract
This study compared mortality among Danish citizens with autism spectrum disorders (ASDs) with that of the general population. A clinical cohort of 341 Danish individuals with variants of ASD, previously followed over the period 1960-93, now on average 43 years of age, were updated with respect to mortality and causes of death. Standardized mortality ratios (SMRs) were calculated for various times after diagnosis. In all, 26 persons with ASD had died, whereas the expected number of deaths was 13.5. Thus the mortality risk among those with ASD was nearly twice that of the general population. The SMR was particularly high in females. The excess mortality risk has remained unchanged since our first study in 1993. Eight of the 26 deaths were associated with epilepsy and four died from epilepsy. Future staff education should focus on better managing of the complex relationships between ASD and physical illness to prevent avoidable deaths.
PMID: 18579647 [PubMed - indexed for MEDLINE]
Posted by: bensmyson | February 16, 2011 at 12:36 PM
Katie,
Thank you for all that you do.
Posted by: Nora | February 16, 2011 at 01:42 AM
I think they are fine with what happens to our kids. It's sick and an unspeakable horror, but I think they figure "so what?" and that way these kids won't be a burden on society as they grow up and their parents die and we as a society try to take care of all these terribly betrayed children, who grew up without a chance.
Somehow, the people in our government on these committees, meant to serve the people, have forgotten that these are not "cases" but real human beings, with hearts and feelings and pain. They don't care. It's just a job.
Thank you Ms. Wright for being the voice of the families who are too busy and powerless to speak, and the children who were robbed of that ability.
Posted by: Lisa | February 16, 2011 at 01:08 AM
http://www.acf.hhs.gov/opa/fact_sheets/add_factsheet.html
Lewis is there to steer as much IACC money to her organization as possible, as are most of the others, except for Lyn. Lewis' HHS office won't get wandering money, so she opposes. If kids die, kids die - her office may need a new carpet.
Posted by: Money Money Money | February 15, 2011 at 11:32 PM
>Still even if you are all for self determination what does that have to do with opposing a anti- wandering program?
Question - what if you compared the anti-wandering program to Amber alert? Or ANY other child protection program for "normal" children? There would be public outrage - yet I'm sure that less than 20% of the population (probably much less) even knows that this is "debate" is going on. For that matter, I bet most people don't even know that "wandering" is a problem - or if they do, they think it's like getting lost walking home from school.
Posted by: Jim Witte | February 15, 2011 at 10:55 PM
I am writing emails to iacc that parents of the most severely impacted need to be represented an the IACC. Our children need to be heard through us who can fight and advocate for them. Our severly impacted non verbal children need their civil liberties and rights protected too and protected from dangers they cannot protect themselves from or get help or even ask for help they need to survive day to day. Loosing a child is parents worst fear and loosing a helpless child who cannot respond or scream for help because the iacc refused to help address it, is unacceptable.
Posted by: Jim | February 15, 2011 at 09:42 PM
"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."
And ASA wonders why I choose not to send them any donations! I swear I get ASA donation solicitations at least twice a month. I will never send a penny to a group headed by a man who does not even care for the safety of our kids. I mean this is LIFE AND DEATH!! Obviously he is not the parent of a wanderer. So to him it's not a priority. Same with "Autism Whispers". I give my $$ to organizations that directly help those families suffering the effects of autism now. (think NFAR,NAA, Generation Rescue) I am actually ashamed to admit that our family went on an "Autism Whispers" walk here in San Diego. That was before I knew their stance on genetics and how much $ their higher ups make. "Autism Whispers" does NOT speak for my son or our family.
Posted by: Michelle Wandrack | February 15, 2011 at 06:50 PM
These panels are like Stalin’s show trials. They are window dressing for the public to make it seem that the government is doing something; they are not meant to actually do anything except normalize autism.
Protecting the vaccine schedule is the number one priority. Doing that means discrediting anyone that proposes a link and downplaying the devastating nature of the damage inflicted. Wandering deaths are serious and frightening, so they get no attention. “Can’t we all get along” side shows like neuro-diversity take center stage.
They don’t want to solve this problem; they want to make it seem normal.
Posted by: Jeff C. | February 15, 2011 at 04:46 PM
http://www.acf.hhs.gov/orgs/bios/slewis.htm
This bio says she has a child with a disability. One can only assume it isn't severe autism. Seems like maybe she's more of a legislative functionary than a leader. Yawn.
Posted by: Bored of Bureaucrats | February 15, 2011 at 03:39 PM
As always, Thanks Katie.
Could it just be better "reporting of wandering" rather than a real increase in wandering itself ???
Posted by: cmo | February 15, 2011 at 12:49 PM
Henry,
Exactly, why would anyone not support this? Lewis' attitude is unconscionable. I had the same thought that there seems to be a hidden agenda or multiple agendas or, maybe, they just don't care.
As a parents of a wanderer, this makes be very angry. I am going to send an email to Ms. Lewis with a cc her boss, and my US Senators.
Posted by: Sarah | February 15, 2011 at 12:38 PM
Katie- thanks for keeping us informed. This is seriously unconscionable.
ps. That picture makes me want to throw up.
Posted by: Kristine | February 15, 2011 at 12:13 PM
Just last month, a friend of ours autistic son went missing in the woods behind their house. As I got the word, I immediately jumped in my car and went to a friends house to pick up an ATV. While I was hooking up the ATV trailer, I got word he was found by volunteers and police. 3 hours later.
Since then, I've been having nightmares about my son 'disappearing'. It's a major concern of mine. I've had nightmares where we lost him in a supermarket, behind our house, and on a trip. Waking up in a sweat. These nightmares are so real.
I wish others could see it the way we do...hunting, looking for a child who will not respond back to you...it's like looking for a needle in a haystack.
Kind of similar of searching for his recovery, don't you think?
Posted by: Kevin | February 15, 2011 at 12:04 PM
Yes I do believe that Roithmayr and Geri Dawson are concerned about autism. I do not agree with many grant selections but that is a separate issue.
Dr. Dawson came out strongly in opposition to Sharon Lewis arguing there is no need to "wait for research" in wandering deaths in order to support this project.
With all due respect Michael, I understand the frustration but AS is not the problem here.
The problem is people Sharon Lewis and the lack of real consumer representation on IACC. This incident is EXACTLY why I argued to Dr. Collins a year ago that parents of severely affected and nonverbal children (of natl organizations) must be appointed to IACC.
Posted by: Katie Wright | February 15, 2011 at 11:51 AM
Sharon Lewis and Lee Grossman sound like some sick people. As someone who has worked with special needs children for years (including children with autism) I am appalled. I guess they won't mind having blood on their hands when future children (and there will be some) go missing and die.
Posted by: Jen | February 15, 2011 at 11:01 AM
I have no idea how anyone could be against a child mortality prevention project.
My guess is that Sharon has no idea what severe autism is like or how easily and often these wandering deaths occur and she is NOT open to learning more about the subject.
Another guess is that Sharon is super invested in the neurodiversity movement. She spoke constantly about the need for self determination. Sharon is sponsoring a hugely expensive "autism clearing house" project- I think over $2 million. It would be fine if she called it the aspergers clearinghouse because she chooses only to work w/ neurodiversity groups on the projects.
Still even if you are all for self determination what does that have to do with opposing a anti- wandering program? What makes this person so grossly insensitive?
Posted by: Katie Wright | February 15, 2011 at 10:55 AM
Mark Roithmayr, the President of Autism Speaks, makes $333,398. The Chief Science Officer makes $409,382. Do you think these people are concerned about autism or making a living off of it?
Posted by: Michael Baun | February 15, 2011 at 10:52 AM
If they do not admit that there are many children with severe autism, then they can attempt to minimize the severity of the autism epidemic - possibly even continue to deny that one exists. They can continue to promote the view that children with autism are just "quirky" (otherwise known as "geeks" or "nerds") and therefore, there is no urgent need to do anything.
To us, even one death from wandering is too much. To a bureaucrat, something is only a problem if a very large number of people are affected.
Ms. Lewis may also be afraid that funding to her pet project might be cut in order to act to prevent deaths from wandering. Death is a more serious matter than "self-determination".
Posted by: Carolyn M | February 15, 2011 at 10:34 AM
I simply can't understand why people are opposed to this program. My son, 6 years old, has "recovered" enough that I no longer stress about him wandering, but I spent 4 years with an iron grip on him and still worry when we're out and about. I think this should be a top priority and all parents should be able to comprehend this fear. The thought that comes to my mind is that this refusal IS tied to the vaccine program. Over and over we hear that if you don't vaccinate, children will die...now here we have by implication, our children were vaccinated, they have autism because of this and they ARE dying. So, yes, I think this is tied to the vaccine program in some way. As for autism parents who don't support this issues - I just don't get it.
Posted by: Patti | February 15, 2011 at 10:21 AM
Putting money on this wandering issue would take money away from the genetic studies.
Posted by: Benedetta | February 15, 2011 at 10:09 AM
What is so chilling here is that it does not remotely touch on the vaccine issue, it is just the autism parents of America being hung out to dry, and it looks malicious. It isn't even defending an interest, it is humiliating a vulnerable community and exposing their children to risk. These actions are beneath contempt.
Posted by: John Stone | February 15, 2011 at 09:53 AM
From what you describe, I think there must be another agenda at work here. How can anyone be against doing something to address the "Autism Wanderers"?
To simply say they are insensitive and compassionless doesn't quite measure up to their ignorance. I put these people in the same category as Holocaust deniers.
Posted by: Harry H. | February 15, 2011 at 09:27 AM
you know screw Sharon Lewis and the IACC... some of these members are beyond useless and they don't get it so, as I've said before, let's get a US Rep to sponsor a bill named after one of our kids who died due to wandering so we can get funding to educate emergency responders to the problem and provide funds for a project lifesaver programs.
Let's not waste time with these people.
Posted by: Sarah | February 15, 2011 at 08:12 AM
The unconscionable behaviors of people like Sharon Lewis and Henry Claypool are only strange if you don't consider the larger context. As the parents of autistic children, we are trying to advocate for the most abused population in the history of medicine... possibly in the history of mankind. The crimes that have be committed against our children represent the lowest imaginable levels of depravity.
That truth is ugly, but it is also the grounds for an unimaginable backlash when it does eventually emerge. A lot of people are going to lose their jobs, and many are going to held legally accountable for their unimaginable crimes against children... an truly unfortunate label when you're sitting in a prison cell.
The damage has finally reached a point where it can no longer be explained away, and although I wish it could been acheived by a different means, the momentum is staring to shift.
Sharon Lewis and Henry Claypool are part of the accelerating movement to keep a lid on the truth, and their obscene behaviors reflect the increasing desperation of the other side. Their finally fighting a losing battle.
Posted by: Barry | February 15, 2011 at 07:28 AM
Please continue to work on the wandering and other safety concerns. It my top priority.
Posted by: Safety first | February 15, 2011 at 07:21 AM