Autism Families Shut Out at IACC
By Katie Wright
Alex wanted to wear a tie for the first time in his life. He was also wearing special new slacks and a blazer. Alex is a handsome young man severely affected by autism. He and his mother Elizabeth, traveled all the way from CALIFORNIA to make their pre-approved comments at the public session of IACC.
Elizabeth and other Moms in attendance had to submit pre-approved questions to IACC in order to be allowed to make comments. OK, why the need to “pre-approve” comments? Are IACC meetings in danger of being crashed by strangers? Is this really such a hot ticket? Why can’t parents just sign up and be told what time to be there? Why is IACC censoring public comment? Who is IACC charged with serving? Uninformed bureaucrats who do not really care about our kids or is IACC there is serve the autism community?
Elizabeth had explained to Alex that they were going to talk at an important meeting and Alex even rehearsed speaking into a microphone. Because no seriously affected autistic person can sit in silence for the 6 hour duration of the meeting, Elizabeth and Alex had to take many walking breaks. They knew it would be their turn to speak at 3:30. 3:30 was also the published public comment time on the IACC agenda website.
As any Mom reading this knows, tremendous effort is required to time everything just right in a formal situation. Bathroom breaks, snacks, water and walking breaks were all carefully orchestrated in order to be at the IACC podium, ready to go at precisely 3:30. Elizabeth and Alex did their part.
Apparently, Tom and some others were in a rush to wrap it up. I suppose they had more important things to do. Rather than sticking to the schedule (a fairly important issue anyone who knows anything about autism should understand) Tom decided to announce time for public comment at 2. Of course all the Moms and their severely affected sons were not in the conference room then, so Tom and Della, IACC’s assistant, decided to end the meeting 2 hours early. Things are going so great with the autism- why continue the meeting? What could there possibly be to talk about? Shortly thereafter Elizabeth, Alex and other ASD family members walked into a nearly empty committee room.
Della was still there and informed the families that the meeting was over, public comment was announced early, they missed it, too bad. Della told the families that they should have been seated and ready to go anytime over the course of the 6 hour meeting! So, rather than apologizing for shafting autism families, this was really Elizabeth’s fault? Does Della even know anything at all about autism? Are she and Tom remotely aware of how utterly impossible it is to ask a severely affected ASD teen to sit silently for 6 hours? Do they care? What was the purpose of the published schedule if it was only going to be tossed aside when it suited Insel? The greatest irony is that these mothers brought their severely affected children so the committee, who are overwhelmingly bureaucrats, not parents, could see what a struggle it can be for these children to function.
Elizabeth did not want the day ruined for Alex. He had worked so hard to be ready. Elizabeth led Alex to the microphone so he finally make his comments- to an empty room. And then she clapped for her son.
Postscipt
To his credit Tom Insel did telephone Elizabeth and apologize.
Elizabeth graciously accepted his apology and spoke to Insel at length about the deficiencies within IACC. Insel listened as Elizabeth stated there is insufficient parent representation on the panel and most committee members appear wholly unfamiliar with issues affecting kids on the severe end of the spectrum. The committee operates with no sense of urgency and seems, at best, indifferent to public input. Insel promised to remedy these issues, specifically by placing this issue on the agenda of the next meeting and never again canceling the public comment segment. Insel is also seeking to have Katherine Sebelius attend the next IACC, so she too may recognize the urgency of the situation. It is in everyone’s interests for Insel to follow through with these promises. Let’s hope that is what happens.
Katie Wright is Contributing Editor for Age of Autism.
If I was ignored, misunderstood, underestimated, bullied, abused on a long term basis, is that not a form of slow death? I mean, the depression and low self esteem and other psychiatric issues that follow from the chronic mental health issues cannot be ignored. There is real pain here, both physical and emotional
Persons with autism who are not gainfully employed or who cannot communicate their needs, or hopes and dreams..what of that?
Or the poor person with autism who has an altercation with law enforcement and is tasered or restrained and is severely injured or worse,simply because they could not follow multi step directions under stress, or took language literally?
There has to be more autism eduation and awareness and support for our population with autism. We have to unite(all groups) and change societal views. For some, autism is a "difference" and those mildly affected people have enough adaptive, social, communication, and cognitive skills to function independently as adults. Unfortunately, not every person with autism is going to develop those skills, and this is why, we need action and not another committee.
Posted by: Kari Buxton | July 29, 2009 at 11:55 AM
Please post what they were going to say. I will put a link to it on my web site www.autisticevents.com I am a mom of a vaccine injured autistic child, who is now 24 years old. Everyone needs to keep speaking out. I was silent for to long.
Posted by: Elisa | July 23, 2009 at 06:39 PM
I think they owe Elizabeth and Alex more than a phone call. Two airline tickets and an over night hotel stay to attend the next meeting in my mind would be perfect.
I also agree Katie that the parent representation on the Committee is not appropriate. It's made up of parents not connected to what is transpiring in the real world or themselves are making money off of ASD.
Bring in someone living at 24/7 reality of actually caring for their child.
JMHO
Posted by: Carolyn | July 23, 2009 at 05:42 PM
Katie, Thanks for the great update. So sorry to hear about Christian's headbanging. A few years ago Colin started that and we also thought it was related to headaches. I would give him a cold wet washcloth to hold. Instead of putting it on his head, he would suck it, which made me think it was a tooth problem. It did help in some way. May be worth a try. Hope to see you soon. Maria Dwyer
Posted by: Maria Dwyer | July 23, 2009 at 05:20 PM
I have no doubt in my mind that the next revolution that comes to this country is going to be led by the autism community. A class of people can not be ignored for long as they will make themselves known eventually. I for one have given up totally on this government. I don't care what they say...what they do is all that matters and so far squat has been done to aid our children.
I really don't know why anyone is surprised by this. The IACC did it before and they are not representing the families they were charged with.
People need to wake up and realize the purpose of vaccines is NOT to protect. The two purposes of vaccines is to make BILLIONS of dollars for the drug cartels and to kill off a certain percentage of the population. I have been preaching about CODEX for 2 years now. When the hell are you people going to take the time to learn about it for yourselves? Again here is a link to a presentation done by Ian Crane. It's 90 minute long but the best 90 minutes you will ever spend educating yourself. So here it is once again: http://tinyurl.com/lgsdlm
If you want change then you must give up on the government for your relief.
Posted by: Deborah (www,debstake.wordpress.com) | July 22, 2009 at 11:33 PM
Katie Wright, thank you for your posting on what happened to Christian. To the letter, exactly what happened to my daughter (ten times); each time was denied care by her pediatricians (it's fine, it's fine, they said) and she is brain damaged for life from the vaccines. And now? The wonderful statute of limitations has robbed her of even a hope of retribution. I will spend the rest of my life fighting unsafe vaccines, advocating for justice and safety, and on and on.
Posted by: Nancy | July 22, 2009 at 11:02 PM
"Would it be possible to post what Alex had written for this meeting? I, for one, would love to hear what he took the time to write and say. Just because Mr. Insel didn't want to listen doesn't mean he should go unheard."
Excellent, excellent idea. Please make Alex's speech a post on AoA. (And a Youtube of him delivering it would be nice too!)
Posted by: mom4truth | July 22, 2009 at 10:55 PM
I have a question...if they won't listen to us what if all of us parents quit paying our taxes, there would be way too many of us to put in jail! We have to pay way too much and no one in government is willing to help us so..why should they have a paycheck????
Posted by: Kay | July 22, 2009 at 09:38 PM
Is there no end to the indignities families with autism have to suffer? I've carried a lump in my throat all day for Alex. If by 13 my son can manage a blazer and slacks, a 6 hr airplane trip, and a practiced speech we will have come miraculously far. The idea that his 'moment' could be eliminated like that shakes me to my core. To Alex's mom; all the Autism moms and dads were clapping with you, if you listen really carefully you can hear the roar of our applause.
Posted by: Alison Macneil | July 22, 2009 at 09:14 PM
Would it be possible to post what Alex had written for this meeting? I, for one, would love to hear what he took the time to write and say. Just because Mr. Insel didn't want to listen doesn't mean he should go unheard.
Posted by: melissa mcneese | July 22, 2009 at 07:26 PM
To me, the most abusive part of the story was when Insel called to apologize because, considering his track record, it seems nearly Machiavellian-- simply to have it on the record that he called. It also has a quality of wet blanketing what are still very valid complaints against the committee's betrayals. It sounds so much like when defense attorneys used to aggressively try to grin at and shake the hands of the battered women I advocated for back when I had another life. They would do it outside of court where members of the jury could witness the exchange. I would warn the women that this could happen, giving them the option to demurely avoid the glad-handing humiliation and being put on the spot. The glad-handers were always the most vicious and ready to fling stereotypes once court was in session, not surprisingly.
Insel has had so much time to rectify the grave offenses this committee has committed and, phonecall or not, I'm waiting for the action alert to demand his resignation from IACC...and, all things being equal, from the NIMH.
Posted by: No apologies | July 22, 2009 at 05:03 PM
My heart goes out to you, how inconsiderate they were to you and your son. There is a day of justice coming for our children,I promise.
Posted by: Richard | July 22, 2009 at 05:02 PM
Katie Miller is certainly a briliant young woman who passionately believes her autism is not a disability but a difference. I respect her beliefs as they apply to her. I agree with Katie that much more money should be directed towards augmentative communication devices. Communication is a human right. I also agree that that for far to long services for young adults has been sorely neglected leading to ASD teens being shuffled around through foster care and all too often abused. ASD people deserve an appropriate education a nuturing home environment. Why isn't this a priority?
I also think informed consent for medical procedures is a basic human right. We had no idea that our family history of autoimmune disorders could trigger immune dysfunction via simultaneous multiple vaccines. In fact I was assured that it was "perfectly safe" for my 18 month old to receive 7 vaccines at once. When my son screamed, went stiff and had 104 degree fever for 12 hours afterwards I was assured "this was fine." It wasn't. My son had a basic human right to a pediatrican who would "do no harm."
My son and all the children like him have a basic human right not to be harmed by physicians or medical mandates. My son has a basic human right to his health and the cognitive functioning of the brain he was born with. Katie Miller may feel autism enriched her life but autism has robbed my son of everything he once possessed leaving pain, sadness, fear and frustration.
Christain had a basic human right not to develop ulcertative colitis. Christian has a basic human right to health care- something that is regularly denied to sick kids with autism. Christian has a basic human right to sleep through the night without pain. Christian has the basic human right not to be injected with with heavy metals. Christian has the right to a medical cure for all these conditions.
And families everywhere have the right to answers. We all, especially, have the right to be better represented and served via IACC.
Posted by: Katie Wright | July 22, 2009 at 04:42 PM
Bernie Sanders, the senator from Vermont is a wonderful, caring man and does a call-in radio show every Friday morning at 9 am PST with Portland, Oregon radio host Thom Hartmann called "Brunch with Bernie". He welcomes any topic and will discuss anything.
In 2007, Bernie Sanders voted yes to improve services for people with autism & their families, so he is at least sympathetic to our cause. Thom Hartman speaks regularly about mercury poisoning being linked to autism.
Perhaps someone with more knowledge than me about this topic can call in to his radio show on Friday morning and ask him what's going on?? http://www.thomhartmann.com/ The ph# is 1-866-987-THOM (8466)
Posted by: Julie Swenson | July 22, 2009 at 04:39 PM
Ugh, Sebelius. A pharma shill dressed in progressive clothing.
Dear President Obama, until you do right by our kids, everything you touch will crumble. You gave us lip service during the campaign, now it's SOS (same old s---).
Posted by: julie | July 22, 2009 at 04:33 PM
"Elizabeth did not want the day ruined for Alex. He had worked so hard to be ready. Elizabeth led Alex to the microphone so he finally make his comments- to an empty room. And then she clapped for her son."
Ok, that made me cry. Gosh, what a load of BS...and what a great mom!!
Frankly, I would like to see any person sit down for an entire 6 hour meeting, let alone one affected by autism. I know I couldn't do it!
Posted by: Julie Swenson | July 22, 2009 at 04:29 PM
My heart goes out to Elizabeth and Alex.
Apathy is apathy and our current administration hasn't appeared any more interested than the Bush administration did. The answer is someone (read Katherine Sebelius) needs to take ownership of the proposed outcomes charged to the IACC and be the project leader. There is no sense of urgency because this group doesn't answer to anyone who has taken ownership of the project at hand. This is project management 101, guys. The scope of the project has been written. The project plan now needs to be completed and assigned tasks. Meetings are to judge progress and everyone involved needs to be given the opportunity to speak. For those who are assigned tasks, give me a date when your steps will get done. Period.
Posted by: Kub Marshman | July 22, 2009 at 03:16 PM
Wait wait wait.....
Katie, are you talking about Elizabeth Emken, Vice President of Government Relations for Autism Speaks? The one who lives in California with her two daughters and the son named Alex??
http://www.autismspeaks.org/leadership.php?WT.svl=Top_Nav#elizabeth
To the person who didn't know what the IACC is... http://iacc.hhs.gov/
Right now it's just another BS committee that does nothing for the cause they are supposed to represent. Vaccines aren't the cause, and the answer to the epidemic lies in genetics. Their mascot should be rat dressed in a doctor's coat with his head up his ass.
http://iacc.hhs.gov/reports/2009/iacc-strategic-plan-for-autism-spectrum-disorder-research-jan26.shtml
Each one of their meetings has the same agenda. "How to justify our existence so we can get funding next year"
Posted by: AutisticLiving.com | July 22, 2009 at 01:39 PM
Autism 101: Many of children affected by Autism have schedules and routines outlined daily to assist them with transitions.
Shame on you IACC!
Posted by: cj | July 22, 2009 at 01:37 PM
This made me so mad. I am so sorry you and your son went through this Elizabeth. How frustrating and how RUDE of them! Thank you for going to the meeting, don't give up, you're a great mom and advocate!
Posted by: Elizabeth | July 22, 2009 at 12:38 PM
Perhaps, we should take our kids and stick them in a room alone with the IACC members for six hours. We could all go for a quiet lunch at some nice local cafe, while they all can spend time getting to know our kids.
To make it fair, we could limit the number of children to 20 or so. Having Ms. Sebelius present would give new meaning to the phrase, "Toto, I don't think we're in Kansas anymore."
Posted by: Deb O. | July 22, 2009 at 11:24 AM
I don't blame Insel for this. He's obviously, a man of weak morals and character and just follows orders. His orders have obviously been to avoid studies on vaccines and frustrate families so they give up. His actions show that he KNOWS it's the vaccines and he has chosen to "sell out" to pharma and devastate the children of the WORLD. He's a sad weak man who deserves his special place in hell.
Posted by: Insel is a wienie | July 22, 2009 at 10:43 AM
I am sorry, but untill we get a BIG Politician that has been close to someone with autism and has fire in his/her belly there ain't nothing goin a change.
Posted by: Benedetta Stilwell | July 22, 2009 at 10:22 AM
National Institiute of Health has within it a division of labor. The IACC is one of the division that deals with the problem of autism. It directs funds for research and how to best serve families and individuals with autism.
Is that right!
Posted by: Benedetta Stilwell | July 22, 2009 at 10:17 AM
Caroline,
The IACC is the committee that is supposed to be coordinating all the various government research projects on autism.
They decide the direction of the research. They decided where all the funding goes.
Our community fought hard for years to get and autism bill passed that would provide hundreds of millions in research.
It was finally passed and now all the power that it brings has been put in control of people who can't be bothered to hear from our own kids.
We have parents on the panel, but they are routinely out voted.
And of course PHARMA has their defacto reps there, like Alison Singer.
Posted by: Ginger Taylor | July 22, 2009 at 10:03 AM
I guess I must be stupid--what is IACC? Does it stand for something? Is it an abbreviation for something? Is this the name of something? Totally lost here, sounds like a sad story, but not sure what kind of event this was.
Editor's note: IACC = Interagency Autism Coordinating Committee
Posted by: Caroline Kelley | July 22, 2009 at 09:41 AM
I am just sitting here sobbing.
The level of cruelty that bureaucracy is able to accomplish with a yawn is astonishing. It is absolutely disgusting.
And we are just at their mercy. The mercy of heartless bureaucrats more concerned about their lunch than our sick and dying children.
If there was ever a message to us that says we don't give a shit about you or what you think, this was it.
Can we succeed from the Union?
Can we form the United States of Autism, stop paying our taxes to pay a "scientific community" that feigns concern (badly) at our problems, to fix our problems, and just do it ourselves?
Our territory could be the property of every family with a vaccine damaged and child with autism.
We would be the poorest country on earth, but the most caring, and could probably cure autism in the process.
What does Insel care of autism is fixed or not, if our kids live or die really? His checks will still cash and he will still get lots of pats on the back from associates at cocktail parties for all that great work he is doing for those poor unfortunate children and their families.
Hey Insel... why don't you show up at the next National Biodefense Science Board Meeting and mention to them that putting out TENS OF MILLIONS OF DOSES OF UNTESTED VACCINES WITH SQUALENE AND MERCURY IN THEM, AND GIVING IT TO CHILDREN, MIGHT BE A VERY, VERY BAD IDEA!!!
Or is it a good idea to you? I mean, it only has the potential to make more sick kids, get you more funding, and pour research dollars into "what can these new mystery autoimmune illnesses be that couldn't possibly be vaccine damage because we know vaccines are good and don't even have to prove it in studies 'cause we know that they are good because of all their goodness".
I am so, so angry.
I am so angry.
And Elizabeth and the families that didn't get to testify, if you don't submit a bill to IACC for EVERY DIME you spent to get there, right down to the cost of Alex's new tie, then I will.
Posted by: Ginger Taylor | July 22, 2009 at 09:40 AM
I greatly appreciate the effort of those attending the IACC meeting. It is because of dedicated, determined people like yourselves...the entrenched "pro-vaccine" public health bureaucracy, represented by the likes of Tom Insel at IACC, must reveal themselves by resorting to deceptive tactics rather than hear public comments from those most knowledgeable about autism, such as, Elizabeth and Alex.
Unfortunately, we are forced to play with their ball, on their court, with their rules..and...their umpires. And, they shamelessly exploit their advantage at every opportunity they can.
.
Posted by: Bob Moffitt | July 22, 2009 at 09:21 AM
Thank you Elizabeth and Alex for getting to the meeting to speak to the committee. And all the other families that attempted to do the same.
My heart broke when I read how Alex stood and read his speech to an empty room and his mom clapped for him. Arghhh! All the preparation they took to be there and they get the shaft from Insel.
And, is Insel's promise to "try" and get Kathleen Sebelius at the next meeting yet another empty promise of his? I bet it is. He has a track record of sticking it to us, doesn't he?
Posted by: Andrea | July 22, 2009 at 08:15 AM
I can feel your blood boiling Katie. I am thankful you are on our team. Remember to breath then kick the .... out of them. "Silence like a cancer grows..." Parents we must be vocal.
I sure would like to see the day Katherine Sebelius shows up. She seems like she will continue the years of Bush apathy towards advocating for real unbiased science when it comes to Autism Environment Vaccine issues.
Posted by: Tanners Dad | July 22, 2009 at 06:15 AM