April 9, 2009

Alison Singer as Autism Czar? Oh Please Lord... No.

Rumor has it that Alison Singer, recently fired from her position as senior vice president of Autism Speaks for voting down vaccine/autism research on the IACC, is campaigning hard to become the Autism Czar.

Obama said during his campaign that he would create the position to tackle the autism epidemic, and apparently Singer thinks that her, "there is no epidemic, autism is purely genetic", stance is just the right approach to ending the epidemic. Brilliant.

Keep in mind that her "genes only" approach only leads to autism being cured the same way Downs Syndrome is now cured... aborting people who have even a genetic risk.

Lunching with Paul Offit and the suspicion that she is getting financing from Pharma for her aggressive vaccine stance (and the fact that she did nothing for our kids during her tenure at AS) has earned her the disdain of biomed parents; and her public statement that she considered killing her child and herself by driving off a bridge has put her at the top of the hit list of the neurodiversity community. (I am right there with them on that one. Have you heard that Singer's AS doesn't let people with Autism speak at their events?)

Alison, please do us a favor and go away. You seem to have no other agenda than to satiate your ambition and line your pockets while holding back real progress in improving our kids health, functioning, dignity and public treatment. You don't empower people with autism or parents of people with autism. You just empower you and those who are harming our kids.

Anyone else feel the same?

UPDATE: Someone asked about the Autism Czar position. This was put out by the Obama campaign before the election:

Paid for by Obama for America

More than one million Americans have Autism Spectrum Disorders (ASD), a complex condition that impacts communication, socialization, and behavior. And more cases of ASD are being recognized across the country at an alarming pace. Barack Obama believes that we must do more to help support Americans with ASD, their families, and their communities. Throughout his career, Barack Obama has worked with families affected by ASD to raise awareness and to provide support to parents and families living with ASD. As president, Obama will build on these many years of advocacy and ensure that his administration prioritizes ASD research, public awareness, and lifelong support services. Obama will seek to increase federal ASD funding for research, treatment, screenings, public awareness, and support services to $1 billion annually by the end of his first term in office. Obama will also continue to work with parents, physicians, providers, researchers, and schools to create opportunities and effective solutions for people with ASD.

Record of Leadership on ASD Research and Care: As an Illinois state senator, Barack Obama sponsored legislation that became law to create an ASD diagnosis education program, an initiative designed to promote the implementation of evidence-based practices. The goal of the project is to offer educational opportunities at all levels of care, including physicians, early intervention (EI) specialists, psychologists, teachers, day care providers, parents, respite workers, and speech and language therapists. Obama has personally worked side-byside with Illinois families affected by ASD to support efforts to build the Therapeutic School and Center for Autism Research. This school and research center will bring together education, academic research, early intervention programs, and training to prepare its students for independent living.

In the U.S. Senate, Obama is a cosponsor of a measure that would expand federal funding for life-long services for people with ASD, authorizing approximately $350 million in new federal funding for key programs related to treatments, interventions and services for both children and adults with ASD.

Appoint Federal ASD Coordinator to Oversee All Federal ASD Efforts: Barack Obama will ensure all federal ASD activities occur in an efficient manner that prioritizes both research and supports for families affected by ASD. Obama will appoint a Federal ASD Coordinator to oversee federal ASD research and federal efforts to improve awareness of ASD and improve the training of medical professionals to identify and treat ASD. By establishing one top-level point person to coordinate ASD efforts in the White House, Obama will ensure that ASD receives the recognition and priority it deserves in the federal government. The Federal ASD Coordinator will also be tasked with eliminating bureaucratic obstacles that may be delaying implementation of important ASD measures and ensuring that all federal ASD dollars are being spent in a manner that prioritizes results. The Coordinator will work with state task forces on ASD to ensure effective communication and
collaboration among federal, state, and local agencies.

Fully Fund the Combating Autism Act and Federal Autism Research Initiatives: Barack Obama supported the Combating Autism Act of 2006, which was signed into law in December 2006. The Combating Autism Act authorizes increased federal funding for ASD research and efforts to boost public awareness and early diagnosis of ASD. Since the bill has been enacted, however, federal funding for ASD has not increased to the levels Paid for by Obama for America authorized by the Combating Autism Act. As a U.S. Senator, Obama has worked to fully fund the Combating Autism Act and as president, he will ensure that his administration addresses the growing impact of ASD and other special needs on American families. President Obama will fully fund the Combating Autism Act, which provides nearly $1 billion in autism-related funding over 5 years, and work with Congress, parents and ASD experts to determine how to further improve federal and state programs.

Support Special Needs Education for Children with ASD: Barack Obama understands that children with special needs – students with visual, hearing, physical, sensory, and mental impairments – require meaningful resources to succeed both inside and outside the classroom. Obama is a strong supporter of the Individuals with Disabilities Education Act (IDEA) and supports full federal funding of the law to truly ensure that no child is left behind. The current underfunding of IDEA causes school districts throughout the country to deny necessary services to students with ASD and other special needs. Obama will also work to change IDEA’s definition of “autism” to Autism Spectrum Disorders to ensure that all children diagnosed with ASD disorders receive the support they need.

Support Universal Screening: While roughly 90 percent of infants in the United States are currently screened for various potentially disabling or life-threatening conditions, fewer than half the states screen all infants for the full recommended panel of 29 disorders. Many of these conditions, if caught early, can be treated before they result in permanent impairments or even death. Barack Obama believes we should screen all infants, and also that we must set a national goal to provide re-screening for all two-year-olds, the age at which some conditions, including ASD, begin to appear. These screenings will be safe and secure, and available for every American that wants them. Part of Obama's early childhood intervention plan will be directed at coordinating fragmented community programs to help provide all children access to screening for disabilities as infants and again as two-year olds. Achieving universal screening is essential so that disabilities can be identified early enough for those children and families to get the special supports and resources they need.

Work Together: As part of his commitment to open the doors of our government to the American people, Barack Obama is committed to facilitating open dialogue among Americans with special needs and their families, federal and state agencies, regional centers, resource centers, research institutions, school districts, first
responders, and community members.


Jenny Webster said...

Feel the same? YES!
Thank you for your well written thoughts... if they were coming from me it would just be a bunch of "f" words!

This woman is horrible.
They should have taken her daughter from her when she uttered those words about driving off a bridge...

Lisa said...

I feel exactly the same!!! She needs to dissapear from our childrens lives forever!!! It would figure that she would be fired from AS and then be on a mission to be the Autism Czar, just so the government could mess things up just a little more for our kids.... I agree with Jenny's comment your blog is nicely written, I too would have said alot of 'f' bombs.. Thanks for keeping us informed


While I don't agree with her stance on vaccines and would not want to see her in "Czar" position, at the same time, I don't think she should be ridiculed for stating she wanted to drive off a bridge.

First off, I saw what you are talking about and she said she wanted to drive off a bridge before she would send her daughter to a school that was understaffed and under-qualified to help children like her daughter.

And second, any spectrum parent who can honestly say they have never felt even a twinge of disappointment or deflation because of having a child on the spectrum is flat-out lying. She was stating what she felt - why ridicule her for it? No one jumps for joy when they get a diagnosis of autism. Some people simply take it much harder than others - and I say this from experience because it has been so incredibly difficult for me knowing that a lot of the dreams I have for my child may never happen. There have even been occasions when I told my husband I felt like driving my truck into a retention pond. But I didn't! In that aspect, I feel sorry for her and it breaks my heart because I know the exact feelings she has had and have had them myself.

My apologies for such a long comment but I just can't agree with ridiculing someone for trying to put into words for people with "typical" children how difficult life can be sometimes when you have a child with autism.

Unknown said...

You got that right, Ginger. A legitimate, qualified autism "czar" would need to be in touch with and represent the views of the autism community. Most parents do not believe that the answer to recovery and stemming the autism epidemic can be found in eugenics. Her appointment would represent a continuation of the travesty in the way that autism is being investigated and addressed in our country.

Ginger Taylor said...


I don't consider my comments about her talking about killing her child ridicule exactly. Quite the contrary. It is something that should be taken dead seriously.

Because it is happening. It is a horrible evil, and whether parents are being driven to it out of selfishness or desperation, it is something that should be in no way acceptable.

And killing them for something as trivial as not having a good enough school? Home school for petes sake!

There are parents at the ends of their ropes, and those parents need help. But those parents who think that killing their children is a viable option are troubled and need help. They don't need to be put in charge of policy.

If she, with all her wealth and resources (you saw her house in the video, right?) has considered it, and has shown the horrible judgment of talking about it publicly, well I will be generous and say that doing so disqualifies her from leadership.

But please don't think that I am mocking her. It is nothing to take lightly.

Wade Rankin said...

This is one of those rare moments in which members of the neurodiversity and biomedical communities can be united. Appointing Singer would be akin to having Lester Maddox (were he still alive) appointed to head up the EEOC.

Nostrum said...

Better than RFK in the post. Lordy, please let it not be him.

Anonymous said...

I'm 100% with you on this one, Ginger. And nobody likes her on either side of the debate; how the hell does she think she is going to get this title?

I fear for the future of my daughter and all the other kids like her if this woman gets that position.

*I* want to see Dr. Bernadine Healy on the throne for "Autism Czar". Only the most extreme on either side of the vax debate could be opposed to Dr. Healy being in that position. Go Dr. Healy!

Robin Nemeth said...

Alison Singer??? Omg…

If I haven’t already made myself clear on this, I sure don’t mind trying again. Cleveland chapter Autism Speaks leaders accused me of threatening and harassing people when I was doing no such thing, and then tried to have me arrested, simply for standing on a public sidewalk two years ago and calmly asking people if they’d like information about vaccine safety. The witch who is the chapter president then later lied on a public internet forum, saying that this never occured. I have never received an apology for this. This alone would be reason enough for me to loath the organization, but it goes farther.

At the walkathon last fall, I was offered a table to hand out my information, which I thought was quite gracious all things considered. I’d begun to feel, over recent months, that things were changing at AS. Then, a few weeks ago during the first days of ‘autism awareness month’, I saw a bit of a news spot about autism by Bob and Suzanne Wright on MSNBC. They were speaking about autism and it was the same old you-know-what. “Complex disorder, mystery, no place to point the blame…”

Where is Katie? I know that she isn’t representing AS, but they could still speak to her in the media. Why doesn’t MSNBC speak to Katie Wright?? I mean, she is, after all, only the boy’s MOM! Mother of the boy that AS was founded for.

Alison. Argh. I wrote Alison shortly after she did an interview with the Wall Street Journal a few years ago, in which she was quoted as saying “the only thing parents of autistic children do wrong is they have bad genes.” I cannot begin to tell you how offensive this is to me, given that I feel that I’m high on the spectrum and given that I’ve actually looked a bit into the evidence for a strong genetic link, and it just doesn’t seem to be there. (Much like the countless marvelous studies showing that vaccines don’t cause autism). I’ve found a few badly done twin studies. Alison issued an apology for that statement, but it lasted all of a few days on the AS website, and then was gone.

I’ve written and called the local AS leadership, asking them to explain something to me. The upcoming benefit at the Rock and Roll Hall of Fame is going to honor local WKYC TV health reporter and noon anchor Monica Robins. I would like to know why? I contacted Ms. Robins last fall prior to the AS walkathon, when I saw a television spot on WKYC promoting AS. “Why don’t you cover the vaccine/autism link?” I asked her? And she replied to me, by email, that she HAS covered it. I wrote her back asking where and when such stories were aired or published, as I could not find anything archived on the WKYC website. She never sent me any reply. I also wanted to know if Dr. Healy, also an honoree, would agree to clarify publicly at the Rock Til it Stops benefit, that there are STILL mercury laden flu vaccines being administered to babies, pregnant women, and children. (she spoke with Imus in an interview, available on the AS website, in which they say that the mercury has been removed from all childhood vaccines. This is wrong! I have written wrote Ms. Healy, expressing my concerns about this, twice.)

No no no no nooooo. This leopard hasn’t even begun to change it’s spots. I don’t know if it ever will.

I am planning to be at the Rock til It Stops event. I won’t be buying tickets. I couldn’t if I wanted to. They don’t say in the emails I received or on the website I looked at how much tickets cost, or when the event is to take place. And when I try to contact them for information, I get no response from them. But I will be there outside, on the sidewalk or as close as I can get and be seen. I will not threaten or harass anyone. Unless they find my sign threatening. You can see the two sides of the sign I will be making to take with me here:


Call me extreme if you want, but I think that Dr. Healy did the right thing but she did it late. Maybe I’m wrong, but as former head of the NIH it is hard for me to imagine that she could have been unaware about concerns about vaccines many years ago. And yet she waited so long to speak out. But what’s passed is past, and I’m for moving on as she’s certainly saying the right things now. Except for this issue about the flu shots. This needs to be clarified and corrected--these statements she’s made--and quite publicly. There are still children being poisoned thru flu vaccines and it has to stop.

I would be all for Dr. Healy as czar if she were to do this.
But Alison?? Omg, no.

K Fuller said...

Alison Singer seems to be too single minded. Was she really having lunch with Paul Offit? This frightens me more than my son's Autism. She comes across as sad, angry and hopeless. Maybe her daughter never developed normally? Maybe her daughter never said Mamma and Dada? Never played patty-cake? etc.etc. Maybe her daughter did not regress?
I also don't think Obama has been clear on how he feels about what parents are saying happened to their kids. I heard him say last week that they almost lost one of their girls to meningitis. Is he going to come out and support the loaded vaccine schedule?
I have asked those who are so excited about the genetic studies(including my Mother-in-law)if they think that my child should just have been aborted? It shuts most people down.
Alison Singer is not the right person. But who is? And how do we promote them?

freewill said...

hello everyone

listen to this mans show. he talks about the vaccines and how they are effecting everyone...sorry about your sons autism, but i have heard some good things about treatment using diet...organicly grown in your own home using heirloom seeded plants...anyway here is the link to the radio program...

Dadof6Autistickids said...

Filling the Autism Czar position is a priority that I've been concerned about. See...


AND/OR... http://www.youtube.com/watch?v=Zrg2rJMUASA

I personally don't know Ms. Singer and her intentions. However, her association with AS and her reported views would cause me to NOT be pleased with her as the Czar. She seems to be too close to one area of Autism's 'belief camps' to have the objectiveness that persons and families of Autism need.

Autism IS a Spectrum Disorder, CAUSED by a spectrum of reasons, needing a SPECTRUM of treatments or solutions and requiring a spectrum of funding.