IACC: Ethical Disaster Zone
Managing Editor's Note: I wonder if Ed Trevathan, Director of the National Center on Birth Defects and Developmental Disabilities at the CDC, was served a "Mile High Mixer" when he left the IACC meeting early, ostensibly to attend another meeting in DC... And was seen shortly thereafter on a flight to Atlanta, seated in First Class? Katie Wright reveals the story below.
By Katie Wright
My phone would not stop ringing today. Parents everywhere were appalled by the behavior and actions of the IACC. And that is just the parents listening to the committee via phone lines. What people who attended IACC in person told me they observed shocked me.
Many of the committee members are directors of government institutes which conduct autism research. However, some of these directors are sorely lacking basic knowledge about autism. Dr. Story Landis actually asked what IMFAR was! Seriously she did. It was only downhill from there.
The discussion regarding public input was enlightening. Lyn Redwood is one of the very few public members who serve on autism national autism advocacy organizations. Redwood said that the public deserves to have more opportunities for input, such as a live town hall meeting. IACC has not yet presented the finalized plan to the autism community. The public has had no opportunity to comment. Della Hamm immediately rejected that idea stating that a public forum would involve far too much work. However, the work could easily be contracted out to an organization like the Keystone Group.
Ellen Blackwell, Singer and Hamm argued there had been plenty of opportunities for public input (via e-mails that were not discussed at IACC meetings) and that what the public says doesn’t matter because the committee had already voted and made their mind up! Alison Singer, a public member representing no one, jumped in saying that every e-mail to the committee had been read by someone (?), what more could parents possibly want Singer stated that IACC’s only responsibility was to read the e-mails, NOT to agree or act upon them! To his credit, Ed Trevathan was the only IACC member, other than Lyn, who supported a public forum, stating that e-mails are not the same as engaging the public live. Insel said that a town hall meeting would be “unfair” because some people would not be able to attend. What? So very many things about autism are unfair, not being able to attend a town hall meeting does not make my top 500.
It seemed as if there were a million reasons why these committee members do not wish to stand behind their actions in front of the community they have been assigned to serve. Rather than embrace Redwood’s idea and say, “Yes, we are always asking what parents want to know, what they need from us, let’s invite them into the discussion” Insel and company responded by angrily dismissing the idea. They reacted as if Lyn suggested the next IACC meeting be held under water.
Blackwell’s and Singer’s extreme aversion to a public forum revealed their desperation to keep IACC free from any mainstream, normal or rational influences. Blackwell and Singer heatedly argued that all public comments had been “catalogued” (in a waste bin?) and more than enough time had been spent soliciting the public’s input. I think the public deserves to know the content of these e-mails. Singer and Blackwell, non autism community representatives, know that in any public forum 90% of parents would vehemently disagree with their actions and that frightens them. Therefore, they argue that the public should be content to submit silly little e-mails that someone “reads” and then throws away. If IACC wants to take that tack, let’s stop with this pretense of public input altogether and give the committee to the CDC.
I know we were all asking ourselves after the last meeting "how did Singer know in advance there would be a vote to repeal vaccine research when others on the committee did not?" I wonder….We never did get an answer... We do know for a fact that Singer called my parents, Bob and Suzanne Wright, the night before that vote saying she was going to betray them and the organization they founded by voting against AS interests and policies. We also that Lyn Redwood and others had no idea this vote was about to take place. Fact. We know that there are to be no private discussions between committee members, especially between the committee chair, Insel and other board members. This is both a fact and a governing rule of IACC. All discussions are to be recorded and transparent.
After today’s meeting adjourned, everyone appeared to leave the building. 15 minutes after the absolute end of the meeting all IACC members, except two, were gone. Someone witnessed Alison Singer and Tom Insel locked in an intense and lengthy conversation. These two are always on the same page at IACC meetings and it seemed as if they had much to discuss. When Insel realized that they had been spotted, he and Singer panicked and darted in the opposite direction. Why did they run from sight? What were they talking about? Hmmm…I wonder… Here we have the unelected chair of the IACC, a self-professed non expert in autism and Singer, a person who lost her job at Autism Speaks because she was unable to represent the autism community, having a post-IACC private meeting. Too bad their conversation was interrupted; at least there is always time to revisit their agenda later via telephone calls.
Ed “First Class” Trevathan deserves a special mention. Prior to the end of the meeting Ed said he had to rush off early to another CDC meeting in Washington. Ahhh, the work of CDC is never done! So imagine someone’s great surprise when they witnessed Ed, less than an hour later, sitting in First Class section of a flight to Atlanta. Better yet, Ed was enjoying some fine wine at 3:45pm in the afternoon. Is the CDC now holding “meetings” in the First Class of airplanes? Does our government pay for CDC employees to travel First Class because this is not the first time Ed has been sighted in First Class cabin. Does the CDC allow employees to drink alcohol while working in “meetings?” I am just a lay person but CDC ethics are very confusing. I hope someone can help me understand!
Obviously there are many agendas at work in IACC: hiding from the public, thwarting real parental input, engaging in private conversations, lying to sneak out of meetings early…all seem like important IACC priorities, taking precedence over what is happening to our kids. One can only hope that the new administration will to completely overhaul IACC, replacing the zealots and disinterested government hacks with genuine autism community representatives, bona fide autism experts and people truly vested in stopping this epidemic.
Katie Wright has two young boys. Her oldest son, Christian, is severely affected by autism. He developed normally; smiling, talking, walking; only to lose every skill and every word by the age of 2 and a half. Upon the advice of medical professionals Katie and her husband were advised to pursue only high quality behavioral therapy, speech and OT for Christian. It had no meaningful impact on Christian until his parents sought help from DAN! doctors who treated the underlying causes of Christian's descent into autism. Christian has improved but still has far to go. He has Inflammatory Bowel Disease, the measles virus in his gut and an immune system akin to a late stage AIDS patient. Christian does not have a psychiatric disorder. Before autism, Katie Wright was the Clinical Director of Sexual Assault Crisis Center in Stamford Connecticut. Katie is proud to serve on the Boards of NAA and SafeMinds.
Whew, my confidence level is restored.
Not.
Posted by: karenatlanta | March 21, 2009 at 09:42 PM
Katie:
You are so wonderful, a good writer, and gutsy, speaking up for our children. I, myself, listened to the first IACC meetings, and that was enough to see what was going on. I got to hear, first-hand, of the blatant disregard of self-respect. It was obvious that they had an agenda that was not based on self-accountability. Most did not appear to have enough ethics to be able to represent the public welfare. But, Lyn sure stood out as having standards a cut above the rest.
Posted by: Heidi N | March 21, 2009 at 02:02 AM
Stimulus Bill Holds Billions for NIH, CDC
per.............
http://www.genomeweb.com/stimulus-bill-holds-billions-nih-cdc
Good luck with the IACC, the NIH and CDC but I have a gut feeling nothing will come of this money (billions) to help families and children with autism. Just look at prior decades of spending by the CDC and NIH during the Clinton and Bush administrations.
Oh......when was there a new study about the prevalence of autism other than the old, tired figures of 1 in 150 that was done years ago??????
Posted by: Raymond Gallup | March 20, 2009 at 10:47 PM
Vaccinations may not cause genocide exactly but if you really want to be upset copy and paste the transcript of the interview Dr Boyd Haley at autism one radio below.
http://www.usautism.org/PDF_files_newsletters/boyd_haley_biomarkers2.pdf
Here is a little bit of what he says about the best and brightest in our universities today. Remember these kids were born BEFORE 1992 when they added hep B and other fun vaccinations. This is my son's peer group and they are a mess.. depression, drugs, ADD, could they be poisoned?
Dr Haley :
“But at the same time, some of these students are coming
in, and they’re so damaged even this access to our web servers
cannot significantly help them. So, computers aren’t the cause
of our problems. I think the fact that we’ve generated a large
number of young students that have somewhat been damaged
by exposure to mercury when they were infants. “
Teri Small:
“Dr. Haley, what do you think is going to happen to the
American workforce, college graduates and families, with a
widespread neurologically or cognitively damaged male popu-
lation?”
Dr Haley:
“What you see in not only at the University of Kentucky,
but at every university in the
United States probably, is a huge preponderance of foreign stu-
dents coming into graduate school because we can’t find
enough qualified American students in chemistry and math and
other science areas to help us with those laboratories. So the
occupations requiring a math/science education is going to be
taken by people who come from countries where they didn’t
damage their children. This is not a wild speculation. I think out
of 78 nations, if we look at our longevity and our health, the
Untied States ranks 72. We’re not ranking in the top ten. “
Posted by: Maureen O | March 20, 2009 at 10:21 PM
People like Catriona are part of the problem -- another link in the self-reinforcing bureaucratic information chain. Her views are informed and maintained by a laundry list of groups struggling to maintain status quo.
So she's surprised that some parents are upset over their children's vaccine injury... how easily life is when viewed from a safe distance. If you've met one autism parent, you've met one autism parent. Don't paint people with a broad brush unless your name is Benjamin Moore or Pablo Picasso.
About those much-ballyhooed "death threats" -- not that one condones them, but likely those words don't mean much to a parent whose child died from vaccine injury.
Bottom line, Catriona -- you're not listening. And that's your job. If you can't, please consider finding a new one.
Posted by: nhokkanen | March 20, 2009 at 09:15 PM
Thanks Kim, here are the other two I was considering;
'The devil went down to Georgia. brr, brr, bpp, brr,b-brr'
and
'this is definatly not the week to quit sniffing glue' movie:Airplane
Posted by: Alison MacNeil | March 20, 2009 at 08:52 PM
Catriona:
Regarding the “lack of rationality” comment, please understand that the irrational policy of forcing vaccinations, not proven safe, on children is an offense to humanity.
Posted by: sdtech | March 20, 2009 at 07:15 PM
Catriona J. -
"They don't realize they are just a very loud minority group that does not represent the vast majority of parents like myself."
That's really funny, because your Facebook profile lists you as a fan of The Autistic Self Advocacy Network, which advocates, among other things, respect for neurodiversity, and whose fans on facebook include Kristina Chew. The Founding President Ari Ne'eman and Vice President Scott Michael Robertson of ASAN are openly pro-neurodiversity. Robertson is author of a neurodiversity blog.
So neurodiversity is mainstream and questioning vaccines is "fringe"?
I cringe to think you have any influence over the care of autistic children.
Posted by: Val from Ohio | March 20, 2009 at 05:30 PM
As an example of the kinds of attack the Cedillo family have had to put up with there was this in Guardian on-line last weekend:
http://www.guardian.co.uk/commentisfree/cifamerica/2009/mar/15/autism-treatment-payment
The author was such an authority on vaccine science that he thought that MMR contained thimerosal, and the article had to be altered after publication, while several posts deleted.
But I am sure Catriona would approve. The only reason why we are fringe is that we have been pushed aside by powerful interests. It is inconceivable, for example, that the Guardian newspaper would ever voluntarily invite Theresa Cedillo to write an article.
Posted by: John Stone | March 20, 2009 at 05:10 PM
Thank you once again Katie! What tangled webs they weave, right? They'll never allow any form of public and/or live interaction. Our stories are too compelling. Just like Paul Offit will never agree to a live debate with Andy Wakefield.
Ms Catriona - you speak of personal attacks? Well what about the personal attacks on my 14yr old daughter and my family for daring to say autism and vaccines are linked? Personal attacks on a child as disabled and medically ill as Michelle are about as low as it gets.
Theresa
Posted by: Theresa Cedillo | March 20, 2009 at 04:14 PM
Catriona,
You have every right to disagree with me. However,the whole death threat business is over the top. Please, no one here is making "death threats" or "stalking" anyone. We have all heard enough about that drama. I am reporting on what was actually said at IACC. If you do not believe me ask for a transcript. I am glad for you if you feel IACC represents you son well but they are making zero effort to represent mine. This group is designed to serve our entire community and arguing against public forums is ridiculous and insulting- so is lying an sneaking out of a meeting to take an early flight home, first class, on our dime.
Our kids deserve better representatives than this.
Posted by: Katie Wright | March 20, 2009 at 03:09 PM
Oh Alison why didn't I think of that photo!
Posted by: Stagmom | March 20, 2009 at 02:39 PM
John Stone-- isn't THAT interesting? De Angelis, the psychopharmaceutical mobster at JAMA and Deer immortalized together forever (in steel-studded leather)? But I thought Deer claimed he was suspicious of the psychopharm push (I can dig up the article) and that he wasn't defending any pharma products.
I sort of suspect he won't take that picture down. Deer isn't an ideologue, he's the most grotesque kind of opportunist. Ever read "Mephisto"? If it serves him to hang out with science gangsters publishing fraudulant drug studies that harm stroke patients or our kids, he'll suddenly see the merits in doping everyone to Kingdom Come.
Posted by: Gatogorra | March 20, 2009 at 02:29 PM
Stop beating your head across the wall, these people don't care a rats behind, and they are saving their butts, bernie maddoff style..
Refuse vaccines, tell others what happened to your child and let's get our freedome to opt out in line before all of our freedoms are taken. Their aim, to give you no choice.
I say these pseudo committees are about as affective as our stimulus package...full of loopholes and secret deals.
Posted by: Kathy Blanco | March 20, 2009 at 02:22 PM
Snakes on a Plane!
Posted by: Alison MacNeil | March 20, 2009 at 02:09 PM
"Whether or not vaccines cause autism is not my issue it is the personal attacks and *fringe* tactics.
To Catriona with G.S. sash of accomplishments:
Nice try. Pray tell. What is so *FRINGE* about parents relaying a message to the public and government that tells the story of our children's injuries from vaccines and the treatments that are putting them on the road to recovery?
The ONLY reason you think we're *fringe* is because you don't happen to agree with that message -- unless of course, you consider "meeting with Congress", attending public meetings, talking to the media, appearing on Oprah and LKL is somehow *fringe*??
Seriously, don't you have some work to do at your job there in MD? Your fancy title indicates you should be focued on helping children with autism -- not taking "pot shots" at their parents because you don't agree with their viewpoints.
Kelli Ann Davis
DC Political Liaison for Generation Rescue (one of the *fringe* groups you mentioned and the mother of a 16 year old son with autism.)
Posted by: Kelli Ann Davis -- To The Lady With The G.S. Sash of Accomplishments | March 20, 2009 at 01:44 PM
The thought crossed my mind, after reading Catriona’s post, that perhaps some might see the letter that I sent to Alison two years ago as ‘vitriolic’ or as ‘grandstanding’. I know that I’ve gotten a lot of slack from people in particular for referring to the vaccine damage as genocide.
I wrote an open letter to the operators of an internet political chat room in which I addressed this. As it so happens, it’s a room where most of the discussions about vaccine damage, over the years, have amounted to me pointing out facts, followed by others slinging vitriolic ad hominem at me. Comments by people who’ve never met me such as “you drank while you were pregnant and now you want to blame others.” (I did not, btw.)
It’s been my experience that it’s been very difficult to have a rational conversation with those opposed to vaccine/autism research without such vitriolic statements being made by them. Over the years I have been told that I cannot be taken seriously because I care deeply about my children, and yet those whose reputations and profits rest on the immunization of our children never seem to be told that they cannot be taken seriously because they care deeply about their reputations and their profits. I do get emotional. One can’t help it. I think anyone with children can understand this. I try to remain calm and rational. It’s difficult when year after year passes by and justice seems still so far away. Who was it who said “no justice, no peace”?
Anyway, in my letter, here,
http://wideopenwest.com/~r_nemeth/genocide.htm
I try to explain why I feel it is justifiable to refer to vaccine damage as genocide.
Posted by: bad apple | March 20, 2009 at 01:25 PM
"If IACC wants to take that tack, let’s stop with this pretense of public input altogether and give the committee to the CDC."
DING,DING,DING,DING,DING -- BINGO! Hit the nail on the head Katie!
That's why I kept sending comments during the meeting regarding the Autism Advisory Board. THAT would provide REAL input into the process. And I made it extrememly clear that GR wasn't going to support any "public engagement" that does ZILCH in the *mpact department*.
Don't know if you missed my comment the other day, but a LEGAL FACA Expert from a prestigious DC law firm was on the line listening to the wholeeeeee thing.
Trust me....the whole Alison Singer submitting her resignation the night before angle and the revote shenanigans is "front and center" on our radar moving forward.
This thing is FAR from over.
Posted by: Kelli Ann Davis | March 20, 2009 at 01:13 PM
Well then you've been very busy sewing badges onto your sash, then, haven't you?
I think we've seen enough of your work and how you feel about us and, by extension, our children, Catriona. I find it revolting that you recommend services for children with autism.
Mar sin leibh.
Kim
Posted by: Stagmom | March 20, 2009 at 12:20 PM
To Kim:
If you would like my work and volunteer history you may wish to also see (work) National Disability Rights Network, Kennedy Foundation Fellow, MD Developmental Disabilities Council, The Arc of Maryland, The Empower Program; and (volunteer) ASA Government Relations Committee, Howard County Autism Society, Parents' Place of Maryland, Maryland Coalition for Inclusive Education, Baltimore Health Care Access....
Having a job in government doesn't make a parent of a child with autism the enemy. In fact it might give a parent a broader perspective on disability policy, best practices, and the political process. Whether or not vaccines cause autism is not my issue -- it is the personal attacks and fringe tactics.
And thanks... it's Scottish actually.
Catriona
Posted by: Catriona Johnson | March 20, 2009 at 12:15 PM
Ms C. Johnson,
Your funniest statement is"grandstanding of these groups is painful to watch and hurts people with autism." The opposite couldn't be more true. If it weren't for people like Lyn Redwood, groups like GR, I would never have been able to recover my grandson from autism(vaccine injury) nor have the other grandson on his way to recovery.
If it's so hard to watch, I'd suggest a new pair of blinders to replace your old ones.
maurine
Posted by: Maurine Meleck | March 20, 2009 at 12:11 PM
Catriona Johnson - that's a pretty unusual name - and a very pretty Irish name at that. Catriona. But the google finds one who is in public health, isn't that interesting? I wonder if this is the same person as is listed on Linkedin?
Catriona Johnson’s Experience
Asst. Director for State and Federal Relations
Maryland Developmental Disabilities Administration
Catriona, you should be ashamed of yourself. And you don't represent the childrne of Maryland well at all.
Kim
Posted by: Stagmom for Catriona | March 20, 2009 at 11:44 AM
Katie, thank you so much for sharing some of the inside story. And huge thanks to you and to Lyn Redwood for all your work and persistence.
Catriona J., I am constantly impressed with the "rationality" and intelligence and knowledge of parents who speak out on behalf of vaccine problems, including the link between vaccines and autism. People such as Lyn Redwood, Louise Kuo Habakus, John Gilmore, and many many more speak so eloquently and reasonably.
Yes there are strong emotions, but I see a lot more "vitriol" coming from the pro-vaccines-as-they-are-and-anti-acknowledging-and-studying-and-addressing-any-problems side.
Posted by: Twyla | March 20, 2009 at 11:39 AM
The devil is in the details. And this post most certainly has the details, thank you, Katie.
Their "science" has already convinced them that vaccines have nothing to do with autism and they don't feel the need to do anymore and certainly don't want to do anymore! I and all of us here at AoA beg to differ.
Their doody, half-butt "science" has yet to answer the facts of children's disordered development, and until they listen to our family stories and parental concerns, we will continue to fight with them.
Posted by: Amber | March 20, 2009 at 11:36 AM
Dear Catriona,
It seems that your mind is made up and that you have chosen your side. Hey, it's America and that is your right. I would, however, warn you that making unsubstantiated accusations against Generation Rescue, or any other organization that is pushing for vaccine safety is very serious. It is a tired tactic that is very easily seen through.
Posted by: Tim Booton | March 20, 2009 at 11:34 AM
I sent a letter to Alison Singer shortly after she did an interview with the Wall Street Journal—I believe it was in February of 07. It was the one in which she was quoted on their front page as saying “the only thing parents of children with autism do wrong is have bad genes”. The letter read as follows:
Ms. Singer,
You’ve clarified your statement to the Wall Street Journal, on the Autism Speaks website. This, however, is insufficient. You had an opportunity to reach hundreds of thousands of people. You used that opportunity to help those whose agenda is to profit from the poisoning of our children. How many people do you think will read the clarification of your statement that is on the Autism Speaks website?
Do you think that parents of autistic children are going to be less offended by being told that they have simply passed on bad genes than they were at being told that they are at fault for their child’s autism because they let their child watch too much television, or because they are cold, refrigerator parents? Do you have any notion at all of how offensive I, as a person who once considered myself a person with Aspergers but now considers myself a person who has been mercury poisoned by my government, finds your ridiculous statement to the Wall Street Journal?
If I had been interviewed for a story in the Wall Street Journal, and I misspoke, and I left the impression that the only cause of autism is bad genes, or if I’d been misquoted, or had my words taken out of context, I would be doing everything within my power to make sure that this was corrected. To make sure that my real intentions, my real meanings, were properly conveyed. Publicly. Through the main stream media and the press. Not on some website that far fewer people (and people who are for the most part already largely informed regarding this issue, anyway), might happen upon.
Will I be seeing a statement from you any time soon on the television, or the radio, or quoted in the press, in which you state your belief that environmental triggers should be looked into as a cause of autism? Could I dare to hope that you might want to raise awareness about mercury, or possibly even the horrible ‘t’ word – thimerosal?
Do you believe that mercury could contribute to developmental and neurological disorders? Are you aware that there are a huge number of parents and scientists who do? Or am I to believe that you’ve never heard of the word ‘thimerosal’? Why do you continue to so adamantly insist on ignoring the big huge stinking gorilla that is sitting right in the middle of the parlor? If you have heard of the theory but believe it to be a crackpot theory, even a crackpot theory warrants a mention, once in a blue moon. Unless it is a theory that you would prefer would just go away. Unless it is a theory that you, like the pharmaceutical makers, are afraid of.
I understand that you have a child with autism. I will not pretend to understand what it must be like to have a child with autism. I will tell you that I understand what it is like to be afraid of having a child with autism. To be told that your child might have autism. To watch a child unable to interact with her peers. And although I am not diagnosed with Aspergers, I understand what it is like to have it.
How can you look at yourself in the mirror, knowing that you are helping the people who’ve caused your child to be the way he or she is? Nobody can be inside another person’s head, but I will tell you that it isn’t easy being mercury poisoned. It hasn’t been easy for me, and it isn’t easy for my children, and we have only the most minor of symptoms. Imagine what it must be like to have severe problems? Imagine what it must be like to have severe gastro intestinal pain? To be unable to interact with the people around you. I know you probably have done this, tried to imagine this.
How can you live with yourself knowing that you are helping the people who’ve done this to your child?
Do you tell yourself that the skull and crossbones on the Thimerosal bottle means nothing? That it’s the concentration that makes a poison, and it’s not high enough in vaccines to cause harm, even though according to the material safety data sheet concentrations like the ones in vaccines are too high to be flushed down your toilet? Do you ignore the fact that there were no safety studies on Thimerosal prior to it’s use in vaccines? Do you ignore the thousands of papers which discuss the toxicity of Thimerosal? The graphs which show an increase in autism with an increase in thimerosal exposure? You and the vast majority of the people and the dollars in your organization ignore all of these things in order to concentrate on a search for the genes that make a few people slightly more prone to the affects of a neurotoxin than other people. What you and the government officials and the scientists who are focusing their efforts on genetics are doing is akin to blaming the people in Auschwitz for their own deaths. Because they had the bad misfortune of having particularly bad genes. It must just be that those jewish genes are particularly susceptible to the affects of nerve gas. Oh well, too bad for the jews.
You ignore the efforts of the manufacturers to buy up the media; that most of the commercials on my nightly news on any station I watch in the evening are sponsored by the same companies who appear to now be sponsoring you and your organization. You ignore the efforts of manufacturers to buy indemnity from Congress, for the harm their products cause. You ignore the fact that the unvaccinated children with autism or asthma are almost nonexistent. You ignore all of the conflicts of interest. With two clicks of my mouse I can show that the safety study of Thimerosal that was paid for by the CDC was conducted by the very same people in Denmark who’ve profited from the selling of Thimerosal containing vaccines in the US. You ignore the fact that data has been kept from the public, in violation of the freedom of information act, or else lost. You ignore the fact that the CDC has said mercury should be removed from vaccines, but then has done nothing to enforce that this occurs, but rather backpedals, now, in an effort to protect it’s clients in the drug industry.
I can’t fathom any of this, but what I really can’t fathom is how you manage to ignore the fact that you are helping the people who’ve destroyed your child.
I don’t believe that people go to hell when they die, for the sins that they’ve committed. I believe that they create their own hell here on earth, for the sins that they’ve committed. The hell you’ve created must be a horrible one indeed. It is only too bad that your child must live in it with you.
Robin Nemeth
In case you’re wondering, I never did get any reply back from Alison. If she read it at all I’m pretty confident it ended up in her circular file. You’re probably not surprised and neither am I. But I thought of the letter just now because this is pretty much the sort of thing I would have to say, if given a chance to speak at a town hall meeting.
Why is she still speaking for the autism community? I thought she’d resigned.
Posted by: bad apple | March 20, 2009 at 11:23 AM
My guess is that by now Allison Singer has an unofficially paid position with the government's growing gestopo group against the autism community. Thank you katie for enlightening us to these events and thank you Lyn as you have always been lighting my way.
Maurine
Posted by: Maurine Meleck | March 20, 2009 at 10:57 AM
The funniest statement in this piece is "Blackwell’s and Singer’s extreme aversion to a public forum revealed their desperation to keep IACC free from any mainstream, normal or rational influences." As a former Capitol Hill staffer, I was constantly appalled by the lack of rationality of groups like Generation Rescue and other anti-vaccine groups. They don't realize they are just a very loud minority group that does not represent the vast majority of parents like myself. The death threats, stalking, vitriol and grandstanding of these groups is painful to watch and hurts people with autism. It is not mainstream, normal or rational.
Posted by: Catriona Johnson | March 20, 2009 at 10:55 AM
"I used to think maybe I was too skeptical. Now I think I was too naive. thanks katie for helping turn my head around."
I'm beyond skeptical and probably what many would call a conspiracy theorist. No I don't think everyone is evil, there are probably lots of decent people at certain agencies who don't go to bed at night dreaming up new ways to harm children, and all that. But the boundaries of healthy skepticism become blurry when certain of these individuals behave as they do, and then use "science" as a cover for their otherwise morally repugnant behavior.
Posted by: randy | March 20, 2009 at 10:49 AM
Katie,
If Allison Singer called your parents the night before the vote and specifically said she would not be voting the way AS would want her to, I have some questions:
1. Isn't that proof she knew of the vote ahead of time, which is a violation?
2. Wouldn't that violation make the vote invalid?
3. If she resigned from AS and had been on the IACC to represent AS, how is it possible she is still on the committee? When she resigned as being the representative of AS, she technically resigned from the IACC as well, no?
These are serious legal violations that greatly impact our children. What legal recourse do we have? Our community should not let this go.
Allison Singer must immediately abandon her seat, and she must be forced to come clean about how she new about the vote ahead of time. Period.
Posted by: Julie Obradovic | March 20, 2009 at 10:49 AM
Gatagorra
Interesting story: Catherine DeAngelis - who is named in the report you link to - appeared with journalist Brian Deer at the University of Michigan the day before the vaccine court verdict, when he gave his lecture 'Science, the Media and Responsibility for Public Health - Lessons Learned from the MMR Vaccine'.
I wonder whether he will continue to keep her portrait on his site, cameoed beside himself in the poster for the event?
Posted by: John Stone | March 20, 2009 at 10:48 AM
Thanks again for everything you do. We are grateful for your posts on Age of Autism. And a shout out to Lyn Redwood, another "warrior mom" who is always fighting for our children.
I cannot believe that with all the stories in the news about companies taking advantage of public funds that yahoos at the CDC are flying FIRST CLASS!
"A public forum would be too much work"? Are you kidding me? So insulting on many levels. If these people are scared of some hard work (aka doing their jobs) then FIRE THEM!
Posted by: Christine Heeren | March 20, 2009 at 10:38 AM
Thanks for letting us know what's REALLY going on.
Posted by: My Son Bowls for SpecialOlympics andYourNotFunnyObama | March 20, 2009 at 09:57 AM
We have a new and presently revamping Department of Justice, which seems to be behaving somewhat differently regarding previously "untouchable" pharma corruption. Check this out:
http://tinyurl.com/ctdugm
I'm wondering if this new DOJ should be put to the test over this issue.
Posted by: Gatogorra | March 20, 2009 at 09:46 AM
I still don't get Allison Singer. She represents no-one. Why is she still participating? Did AS ever replace her at the IACC?
Posted by: Holly M. | March 20, 2009 at 09:21 AM
sdtech
I think they would probably be best employed breaking rocks.
Posted by: John Stone | March 20, 2009 at 09:16 AM
I used to think maybe I was too skeptical. Now I think I was too naive. thanks katie for helping turn my head around.
Posted by: Dan Olmsted | March 20, 2009 at 08:46 AM
Katie,
There are many ways to tell the truth: with outrage, indignation, humor, sarcasm, or just plain and simple.
The way you tell it is a combo of all of the above that just can't be beat.
I always feel a certain calm come over me after I see our problems through your eyes; it's as if I see the beast come raving and rushing at us, only to have his own strength turned back upon him till he is flailing helplessly on the ground.
Thank you for showing good and evil at work here--as only you can do it.
Posted by: Terri Lewis | March 20, 2009 at 08:19 AM
Superb Katie! When it comes down to it the official science is just window dressing for a cynical, indifferent and hard nosed bureaucracy looking after themselves. What a chilling picture you paint.
John
Posted by: John Stone | March 20, 2009 at 07:53 AM
Katie:
Your outrage is justified. This situation is another example of the ethical vacuum that persists in Washington, DC. But the damage is not done to savings and retirement accounts but to children! These people should be relieved of their jobs and required to work in areas more suitable to their skills such as mattress testing and wine tasting. What lobby group can represent our children to hold the feet of our elected officials to the fire until something is done right?
Posted by: sdtech | March 20, 2009 at 07:47 AM