Tell the Autism Science Foundation What You Think

Published April 18, 2009 @ 03:03PM PT

New path and lighthouse from http://www.whitehavencoast.co.uk/assets/userfiles/project/project_log/.resized_395x526_new_path_1.jpg
Alison Singer, the former Executive Vice President of Autism Speaks who resigned over concerns about that organization's policy on vaccine research, and Karen London, the co-founder of the National Alliance for Autism Research (NAAR), which merged with Autism Speaks in 2006, have started a new organization, the Autism Science Foundation. On the board are Dr. Paul Offit, Chief of Infectious Diseases at Children's Hospital of Philadelphia and author of Autism's False Prophets; Bad Science, Risky Medicine and the Search for a Cure, and Michael Lewis, attorney, mediator and grandfather of a child with autism. Singer and London are both parents of a child on the spectrum, and Singer also has a brother on the spectrum.

The new organization's mission states autism has a "strong genetic component" and also states that vaccines do not cause autism---both positions which should make the Autism Science Foundation the recipient of more than a little ire from proponents of the notion that vaccines can be linked to autism. As Singer is quoted in a press release:

After I left Autism Speaks, I heard over and over from parents who said they needed an organization they could trust to fund nothing but the very best science; science that would open new doors and ask questions that have not yet been answered. That's what we'll do at the Autism Science Foundation."

The Autism Science Foundation's Science Board is still in formation; some members can be seen here.

As this new organization moves forward, and in order to help it best achieve its goals, I highly urge the Autism Science Foundation to include at least one board member who is an individual on the autism spectrum. The Autism Science Foundation's mission is laudable and I think we're all hoping that some new directions, new paths, in understanding autism and finding treatments might result. You can contact the Autism Science Foundation here (I've already emailed them): Please let Singer and London and the board members know that it's vital---it's essential---that individuals on the autism spectrum be included in discussions about autism research.

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Comments (12)

The enemy of my enemy is my friend, or should I just let them rip each other apart with past recriminations unforgiven?

As I have written on my new offhub blog, there is bad science and there is bad science.

Science can be bad because it is incorrect, or it can be bad because it is unscrupulous.

That is to say properly conducted science can be no more useful than crank science if it does not meet some ethical objective. Looking for causes is not ethical because it leads nowhere in particular and drains resources that could be more usefully spent in testing out what is effective in autism.

The worry is that no science can be good if it has prejudged the outcome before deciding what it will investigate, as I do not believe that the genetic component in autism is anything like as strong as the proponents would want us to believe, the level of complexity is so marked, that it implies that autism is not heterogeneous and that it is if anything the result of natural variation, in that there is a distinct mathematical probability that a variety of genetic patterns will predispose toward the effects that observation calls autism in the absence of anything else.

Oh well I wonder if they will get there act together in time for me to apply for funding :)

Posted by Laurentius Rex on 04/18/2009 @ 06:07PM PT
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I should have said "looking for causes is not *wholly* ethical on it's own" as even I am strained by curiosity and the questions I pose in the latter part of my statement as to the non heterogeneous nature of autism and it's relationship to what is am accidental and inevitable confluence of predisposing factors will not come of itself entirely.

The big problem is of looking just at autism, not looking at the wider context of genetics and neurological development.

Posted by Laurentius Rex on 04/18/2009 @ 06:16PM PT
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Isn't Alison Singer the woman who wanted to drive her autistic daughter off of the bridge in the Autism Every Day video? Colour me skeptical, but unless she's changed her mind about autistic people I'm not sure that she'll want someone on the spectrum on the board.

Let's hope that she has changed.

Posted by Jen Niebler on 04/19/2009 @ 03:35AM PT
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Yeah, that has me worried as well.

Also, Harold Koplewicz, the man behind the Ransom Notes PSA campaign, is on the advisory board.

Posted by Cody Boisclair on 04/19/2009 @ 11:07AM PT
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Well at least they don't have Matthew Israel on board! I don't like Koplewicz at all, distrust Singer and Ami Klin, and agree that they MUST HAVE at least one autistic member on their board. Now THAT would really distinguish it from Autism Speaks! I will refrain from forming an opinion about them until we see what they actually do.

Posted by Clay Adams on 04/20/2009 @ 06:47AM PT
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You distrust Ami? Why? I used to work for him years ago and in fact am planning to use him as a contact to express our desire for self-advocate represntation.

Posted by Mark Romoser on 04/20/2009 @ 12:09PM PT
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Hi Mark, I've been reading and enjoying your comments for some time here. I'm not the scientific or technological type, so I can't answer your question in depth. I only know that very recently, on Michelle Dawson's TMoB board, she reported that Klin had only recently made some comments favorable to autistics, instead of displaying a somewhat denigrating attitude. I don't remember the details, but she could answer your question in full. I encourage your using whatever leverage you have with him to press the need for autistic representation there.

Posted by Clay Adams on 04/20/2009 @ 12:25PM PT
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Michelle said:

This http://blogs.webmd.com/breaking-news/2009/...en-with-autism.html is not the Ami Klin I saw present in Montreal last fall, where he flagrantly dehumanized and denigrated autistics, at length, with great slickness and showmanship, clearly enjoying himself.

His published work has been slightly more subtle, but still carrying the same message.

Here is the new Ami Klin:

--------------------------------------------

There is nothing in our research that in any way conveys a sense that children [with autism] are any less human, any less deserving of our love and respect, or any less of anything at all. It’s not an issue that children with autism have no relations with the world, or with parents, or with significant others. It is that the way they seem to learn about this world is rather different than the strategies used by their peers.

By better understanding how they do this, the better we will be able to reach them, and like in any personal relationship, the better they will be able to reach us.

It is critical for us not to focus exclusively or even largely on how the social mind and brain 'break down.' It is equally if not more important an interest how the children build the minds and brains.

They seem to be doing that in very special ways, conferring specialness to their perspective of the world. In so doing, they are adding diversity, uniqueness, and most importantly, a new way of seeing the world. And God knows that we need diversity so as to not become entrenched in old ways of thinking about things. Their different perspective might give us solutions that others, with the typical mind and brain, might never see.

Posted by Clay Adams on 04/20/2009 @ 12:41PM PT
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The purported Autism Science Foundation has begun by declaring, contrary to statements by Dr. Healy, Dr. Gerberding, Dr. Duane Alexander and Dr. Jon Poling that more research is required on vaccine autism isssues, that science has determined that Vaccines and that further investment of limited autism research dollars is not warranted at this time. They also mention the "stong genetic component" without any similar emphasis on environmental factors.

These dogmatic assertions bear little resemblance to high quality science as understood by this autism dad and member of the general public.

http://autisminnb.blogspot.com/2009/04/autism-science-foundation-doesnt.html

Posted by Harold L Doherty on 04/21/2009 @ 08:37AM PT
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Harold, your comments here bear little resemblance to the topic of discussion, which is whether autistics should be on the board of this organization. Your LAME attempt to assert that perhaps vaccines DO cause autism only proves that you're one of those rabid anti-vaxers who just don't care WHAT the science says, you're still sure you're right. Those Docs you mention are pandering to your cause, there's big money in keeping the public frightened and ignorant. Go chase an ambulance!

Posted by Clay Adams on 04/21/2009 @ 09:24AM PT
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Sorry the above post should read

"that science has determined that vaccines do not cause autism and that further investment of limited research dollars is not warranted at this time".

Posted by Harold L Doherty on 04/21/2009 @ 08:39AM PT
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I am thrilled that Dr. London and Karen started Autism Science Foundation.
I met them both in 1998, when we only had 4 children and were getting a 3rd diagnosis. We attended a benefit for NAAR in New Orleans.
Dr. London's opening speech was a heart-warming talk about their child with autism. I will never forget that moment.
I have no doubt in my mind that the London's and whomever they brought to join them will do a great job.

About Allison Singer...I do not judge her. I will look to her like I look to all parent's with children with Autism...with respect.

Posted by Jeanette ODonnell on 04/23/2009 @ 04:10PM PT
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Kristina is a Classics professor in Jersey City, New Jersey, a blogger (formerly at AutismVox), a translator (of Virgil), and an advocate every day for her son, Charlie.