Eric London resigns from Autism Speaks

7 Jul

Dr. Eric London has resigned from Autism Speaks. I read his resignation letter a while back, but I held off blogging it until I could confirm it was legitimate. This letter is taken from the Autism Science Foundation blog.

After three years of great hopes for Autism Speaks being the optimal vehicle to advance autism science and treatment, I regretfully and sadly must announce my dissociation from this organization, including resignation from the Scientific Affairs Committee.

Despite the very excellent work that Autism Speaks has done in the area of awareness and legal advocacy, there are many differences which I have with the organization, mostly concerning the direction and prioritization of the science program. There have been numerous decisions made which I believe have adversely impacted autism research and none of those decisions were made upon the advice of the Scientific Affairs Committee. The processes with which science decisions have been made have been contrary to my hopes and expectations when the NAAR-AS merger was effectuated.

If this were the only issue, I might have continued to try to work from within the organization to influence science policy and direction. However, the pivotal issue compelling my decision is the position which Autism Speaks is taking concerning vaccinations. The arguments which Dr. Dawson and others assert– that the parents need even further assurances and there might be rare cases of “biologically plausible” vaccine involvement –are misleading and disingenuous. Through its website and other communications, Autism Speaks has been influential and contributory in encouraging parents’ doubts. By preferentially investing and advocating for the use of limited financial resources on the “biological plausibility” argument, the organization is adversely impacting the advancement of autism research.

Recent reports have documented significant outbreaks of measles and other infectious diseases which could have been controlled and even eradicated. The lowering of the vaccination rate has already led to deaths. If Autism Speaks’ misguided stance continues, there will be more deaths and potentially the loss of herd immunity which would result in serious outbreaks of otherwise preventable disease. I further fear that if and when herd immunity is lost, there may be a societal backlash against the autism community.

In my role as an Autism Speaks Scientific Affairs Committee member, I would be lending credibility to an organization whose scientific agenda and positions I can no longer ethically support. Please accept my resignation, effective immediately. If anyone would like to discuss this with me further, please do not hesitate to contact me.

Sincerely, Eric London MD

This is pretty harsh criticism of Autism Speaks, which has touted itself as a science-based organization taking direction from the research community. Instead, it appears that decisions are being made in direct opposition to their own Science Affairs Committee.

You may recall that when the IACC’s Strategic Plan was released, Autism Speaks pulled support (whatever that means) based on the lack of research into vaccines. No comment from Autism Speaks on lifespan issues, therapies or any other topic. Just vaccines.

The big question is whether Autism Speaks is just another Vaccines-Cause-Autism organization but hiding under a cloak of science. If so, they should let the donors know so they can take their money elsewhere.

14 Responses to “Eric London resigns from Autism Speaks”

  1. Mike Stanton July 7, 2009 at 01:11 #

    This is good news. Unless AS issues a clear pro science message all science professionals associated with AS should follow Eric’s example.

  2. rajensen088 July 7, 2009 at 04:16 #

    Kev;

    “No comment from Autism Speaks on lifespan issues, therapies or any other topic”.

    Lifespan Issues:

    Autism Speaks is the leading advocate for insurance reform in the US with Bob Wright testifying before many state legislatures and applying the political and economic weight of Autism Speaks with state legislatures throughout the US.

    http://www.autismvotes.org/site/c.frKNI3PCImE/b.3909853/k.BE44/Home.htm

    http://www.autismspeaks.org/press/bob_wright_new_jersey_insurance_testimony.php

    Autism Speaks also is a member and financer for a new initiative on the life span of adult autistic people:

    http://www.autismspeaks.org/press/afaa_advancing_futures_for_adults_with_autism.php

    “The face of autism is rapidly changing with a generation of children who will be entering adulthood over the next 5-10 years,” said Peter Bell, Autism Speaks executive vice president for programs and services. “As a society, we are ill-prepared to deal with what will be a boom in demand for housing, employment and other critical services needed to appropriately serve adults living with autism. This initiative is an effort to create, with the input of a wide range of stakeholders, a useful and actionable public policy agenda.”

    Therapies:

    Autism Speaks was the coordinator for a multi center trial of Prozac, claimed to be an effective treatment for autism. The study found Prozac to be no more effective than placebo. Autism Speaks is funding other trials for therapies using their influence to to cordinate large scale multi center trials of treatment interventions. I expect Eric Hollander the patent holder of Prozac for autism to be the next member to submit his resignation.

    http://www.autismspeaks.org/press/as_announces_sofia_results.php

    To say Autism Speaks is simply an anti-vaccine organization is foolish, misleading and something that can be expected from the neurodiversity crowd.

    The people who have resigned from Autism Speaks (Siger London) to form their own science organization are all parents who deeply believe they have produced genetically defective children, that there is no environmental component in autism, and the studies they want to fund are all genetic studies.

    Among many science initiatives, including genetic research, Autism Speaks hasn’t closed the door on a small percentage of children who may or may not have had a disruption of early brain development associated with vaccine risk.

    Despite many flaws Autism Speaks is the only organization with the political and financial strength to actually make a difference in the lives of families and people unlike the neurodiversity crowd who trivialize a profoundly handicapping disorder and whine about deserving special rights.

    • Sullivan July 7, 2009 at 23:11 #

      RAJ,

      that was my comment, not Kev’s.

      Since I obviously wasn’t clear enough, I thank you for pointing this out and giving me another chance to clarify. I was referring to Autism Speaks’ press release on the IACC strategic plan. The Plan was finalized, and I didn’t see any comments from AS about the issues that are important to me. Perhaps I missed another press release? If so, please post the link. I would sincerely like to see Autism Speaks supporting important issues in the Plan. I found this one on the Plan before it was implemented. Some information on therapies and other issues. Not much on lifespan issues, though.

      To say Autism Speaks is simply an anti-vaccine organization is foolish, misleading and something that can be expected from the neurodiversity crowd.

      Do a quick search of this post and the comments. The first and-at the time your wrote it–only mention of “anti-vaccine” is your comment. Do you actually read the posts or do you just use this forum to make your own comments? To do so is misleading and something that, unfortunately, is expected from some of our commenters.

      You will also find, if you read carefully, that I very rarely use the phrase “anti-vaccine”.

      I don’t expect the apology to be forthcoming. Surprise me.

    • Sullivan July 7, 2009 at 23:32 #

      Despite many flaws Autism Speaks is the only organization with the political and financial strength to actually make a difference in the lives of families…

      You are very much incorrect there. The Autistic Self Advocacy Network (ASAN) has shown that it isn’t just money that speaks, but ideas and highly motivated people. They are making a difference in the lives of families.

  3. Another Voice July 7, 2009 at 07:33 #

    I don’t hold AS in high regard. If Dr. London feels that their movies portraying the horrors of autism constitute “excellent” awareness; then it is good to see him go. Don’t let the door bump you on the way out.

    There is a power shift going on there and the losers are bailing. This happens all the time. Why should the world care if the new power structure changes them to anti-vax from anti-autistics.

  4. ireneburton66 July 7, 2009 at 09:08 #

    I feel quite sad about the resignation of Dr London from Autism Speaks, I had mistakenly believed this was an organization without a hidden agenda.

    On a personal level, what saddens me more is that I allowed my daughters image to be used on the cover of their annual review and also on their newsletter. Her autism was in place before vaccination, surely the vaccine question has been researched to death, any more would surly just muddy the waters for more enlightened research.

  5. Harry July 7, 2009 at 09:35 #

    I think the organisation and running of Autism Speaks shows the victory of realpolitik and gut instincts and emotion over science (and/or common sense).

    As much as I despair over the attitudes of the vaccine/bio-med gang, I also feel desperately sorry for them – they are just being used by their doctors and therapists.

  6. Barry Morse July 7, 2009 at 11:50 #

    Please follow this hypothesis:
    Plastic is the cause of the rapid rise in autism.
    The human brain works primarily by electrical energy. Plastic is an excellent insulator. Plastics photo-degrade; they get smaller but remain as plastic. During the time of fetal neural development, at the moment that the nerves should make connection, they are blocked from doing so by a piece of plastic. I believe the autistic mind produces the same amount of electrical energy and that energy has fewer areas of diffusion. This is evidenced by the heightening the various senses experienced by the autistic individual. Note the rapid rise in autism in the last twenty years and consider the time it would take for the plastics to infiltrate our ecosystem or the direct ingestion of photo-degraded liquid by pregnant women.
    The easiest way to see this is to take a plastic bottle of drinking water and freeze it. Let it thaw and sit. Turn it upside down, turn it into the light and see the shiny plastic particles descend in the water that you are about to drink.
    I believe that this hypothesis bears investigation.

  7. Sullivan July 7, 2009 at 23:39 #

    The people who have resigned from Autism Speaks (Siger London) to form their own science organization are all parents who deeply believe they have produced genetically defective children, that there is no environmental component in autism, and the studies they want to fund are all genetic studies.

    You are just full of inaccuracies today. Do you even look at the ASF website? While they haven’t shown yet what they will fund, here’s a nice list of the research they find important.

    http://www.autismsciencefoundation.org/2007-08research.html

    Maternal antibodies….how exactly is that genetic? Loss of family income? Racial/ethnic disparities?

    The “genetically defective” comment is quite rude, and, I expect, intended as such.

    I guess one of the “special rights” I want for people with autism is the right to be treated with respect. You are able to trample that right, I just don’t understand why you would want to.

  8. rajensen088 July 8, 2009 at 04:10 #

    Sullivan (my apologies to Kev) you wrote:

    “The big question is whether Autism Speaks is just another Vaccines-Cause-Autism organization but hiding under a cloak of science. If so, they should let the donors know so they can take their money elsewhere:.

    The answer as I went to great lengths to explain is no, and your editorial comment is one you are now backing away from. Are you now willing to concede that Autism Speaks is doing more for autistics and their families than say ASAN.

    As far as rudeness is concerned, spare me. Your crowd routinely insults anyone not believing the neurodiversity drivel which continues to trivialize a profoundly handicaping disorder. The cause of autism is unkown and the majority of the ND crowd who believe autism is genetic are disrespecting autistic children and their families by claiming that autistic chidren are genetically defective therefore cannot be cured and continue searching for ‘politically correct’ labels.

    My daughter was diagnosed with PDDNOS and is a grown women cured of her problem , whatever it was, and yet your ilk dismiss her recovery by claiming she is just ‘passing’ as normal which I find demeaning and insulting to her (that was Kristina Chew’s comment about her recovery).

    • Sullivan July 8, 2009 at 04:34 #

      The answer as I went to great lengths to explain is no, and your editorial comment is one you are now backing away from. Are you now willing to concede that Autism Speaks is doing more for autistics and their families than say ASAN.

      I am not backing away from anything.

      I made it very clear that I see ASAN doing more important work for autistics than ASAN. I don’t see why you feel the need to pretend otherwise.

      If you believe that “my crowd” is rude, then take the high road. Apologize. When you find my approach rude, go ahead and call me out on it. I don’t apologize for other people, nor do I take credit for their successes.

      I don’t see any neurodiverse people using the word “defective”. It is an attempt to be insulting, and, as I said before, it is intentional on your part. You can rise above the muck or swim in it. You appear to be choosing the latter.

    • Sullivan July 8, 2009 at 04:40 #

      I note that you are unable to abandon your straw men. As you are well aware, I have acknowledged that autism is not only a genetic condition.

      But, then again, I seem to recall you coming up with a poor argument against a recent genetic study. I encouraged you to actually contact the author for clarification, and you quietly declined. I had to do your work for you. It would have been nice for you to acknowledge your mistake in that thread, rather than to quietly slink away. Just as it would be nice for you to acknowledge your actions in this thread. Nice to have you back in the discussions again, though. Don’t be such a stranger.

  9. Joseph July 8, 2009 at 22:52 #

    @RAJ: I find some of your views on autism, and opinions about some autistic people, to be demeaning and insulting.

  10. calliarcale July 14, 2009 at 21:02 #

    ranjansen088, you say that the neurodiversity folks trivialize a profoundly handicapping disorder, but then go on to say that your experience with autism is having a child with PDD-NOS who is now grown and no longer qualifies for the diagnosis. I also have a child with PDD-NOS who is expected to do the same, though at age 5, she has a long ways to go obviously. I’m glad for you and your daughter, but I think *you* trivialize how profoundly handicapping autism is if you think your experience is representative. PDD-NOS isn’t even on the spectrum; it’s just barely off it. Some of the people you accuse of trivializing autism have children who will never be able to live independently. By suggesting that you know better than they do, it is *you* who are trivializing autism.

    Why would a genetic origin of autism be disrespectful? How does it make the child “defective”? I have a cousin with celiac sprue, a very clearly genetic disorder; I wouldn’t dream of calling her defective. Why would I think of an autistic child as defective? They’re not. They’re just different. They think differently, they learn differently, and if we teach them differently, they can still have the same fair chance at those inalienable rights we hold so dear: life, liberty, and the pursuit of happiness.

    Thing is, I don’t understand the obsession with “proving” that autism isn’t caused by genetics. I think your choice of words is very revealing, though. You can’t seem to separate the words “genetic” and “defective”. You don’t want your daughter’s condition to be genetic, because to you, that would imply she was defective. Why? Why is it somehow more palatable to believe her condition was an injury? Why does the *manner* of the disability matter? Isn’t it more important that she is your daughter, and you love her, and you want her to achieve great things?

    I think that prejudice against the disabled still has a long way to go, if we’re still fighting words like “defective”.

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