Saturday, April 18, 2009

Strong Current, Narrow Channel

I am really interested in a rather unexpected (to me) and quite possibly major shift in the course of autism research funding and guidance that was announced today.

The Autism Science Foundation launched its existence and posted a website today, amidst significant media hoopla and statements made by several important directors and members.

You will, of course, see numerous analyses of this new development over the next few days and weeks. Here's mine: I hope they dedicate themselves to research with tangible benefits to autistic people today and in the future.

The people involved (founding members? Board of Directors?) could not be a more interesting ensemble. I find a lot to like, and frankly an equal amount that makes me nervous.

Begin with Allison Tepper Singer, the former Executive Vice President of monolithic autism charity Autism Speaks, who co-founded the new org with Karen London, formerly of NAAR.
Ms. Tepper-Singer uttered one of the most notorious lines heard in autism documentary film history when she expressed her urge to drive herself and her daughter off the George Washington bridge - with her daughter in the room with her. This, as some will recall, was an early rallying point of the Autism Hub itself - a galvanizing moment that some of the original Hubbers might tell you went a long ways towards cementing the Hub's eventual activist-style approach to controversial issues.

Allison Tepper-Singer left Autism Speaks last fall over a hubbub relating to an IACC vote over funding vaccine research. She stated that her intent to vote against further research in that area clearly opposed the will of the powers-that-be at AS, and resigned as a matter of principle. The new org's initial media statements assert a continuation of that foundational belief:

The Autism Science Foundation's mission is premised on the following facts and principles:
  • Autism is known to have a strong genetic component. Research must aim to discover the mechanisms of action that trigger autism, as well as safe, effective and novel treatments to enhance the quality of life for children and adults currently affected.
  • Early diagnosis and early intervention are critical to helping people with autism reach their potential, but educational, vocational and support services must be applied across the lifespan. Science has a critical role to play in creating evidence-based, effective lifespan interventions.
  • Vaccines save lives; they do not cause autism. Numerous studies have failed to show a causal link between vaccines and autism. Vaccine safety research should continue to be conducted by the public health system in order to ensure vaccine safety and maintain confidence in our national vaccine program, but further investment of limited autism research dollars is not warranted at this time.

I agree with the entirety of that triumvirate of statements, though they do fall short of covering the full range of things I'd like to see flow from our scientific community for autistic people. Its a heck of a start, though, and provides a spectrum (ahem) of goals that can be worked towards.

Also on the Board of Directors is one Dr. Paul Offit. I was extremely pleased to see Dr. Offit's inclusion with this new science group, as he has certainly earned his stripes in the vaccine-autism conflict and has emerged as a knowledgeable leader with great perspective on the science, the media's interpretation of the existing science, and the (quite frankly) dark nature of the more extreme anti-vaccination autism activists. Dr. Offit's book, "Autism's False Prophets" should be required reading for all young parents worrying over vaccinating their kids, for parents of young autistic children who may be considering some of the more dangerous, bizarre, or expensive snake-oil treatments sold as autism cures these days, and for any and all members of the medical and treatment communities that relate in any way to vaccines or autism. Furthermore, Dr. Offit's inclusion, as well as the bold and direct vaccine-related statements made by the Foundation, provide clear focus for their donors and decision-makers, eliminate the political minefield that is vaccine/autism debate, and further marginalizes Generation Rescue (a group that doesn't seem to stay on the fringe despite its junk science and vulgar set of personalities).

Further perusal of the Leaders of the Foundation turn up some other very interesting names.

Catherine Lord is considered to be perhaps the pre-eminent expert in autism diagnostic issues. She is the developer of the Autism Diagnostic Observation Scale (ADOS) which is the most well-supported diagnostic tool currently used. Interestingly, she is (or has recently) released an ADOS-I for infants. When my son Baby C was diagnosed back in August at age 19 months he just missed the release of the ADOS-I.

Harold Koplewicz is well-known around these (Autism Hub) parts for his leadership role in the Ransom Notes campaign, which was utterly despicable. It took tremendous media pressure for him to accede that the campaign was misguided and harmful, but ultimately he did just that. At the time, I recall feeling stunned, in that he essentially owned up to a mistake that totalled probably to the tune of several hundreds of thousands of dollars. He then initiated a series of town-hall meetings to hear more from the ND community - in coordination with Ari Ne'eman as I recall. I'd like to hear from Ari as to what he thinks we might expect from Dr. Koplewicz' involvement with the Foundation.

At the risk of downplaying their obvious strong credentials, I'll omit going into detail on each of the other members. Suffice it to say that I am just fascinated looking at the group that has been assembled, and I feel they have established an extremely strong group to help guide research.

Bottom line, folks, is that autism research is a rushing river these days. It is a strong current forced between two steep banks forming a very, very narrow channel of success. As I have grown weary over the past few years of watching the constant grind that is the vaccine-autism war and its resulting removal of resources towards truly benefitting autistic people (especially those needing more assitance than my own children), I can only begin to guess at the frustration felt by well-meaning researchers, science leaders, and most importantly autistic people and their loved ones. Here is One Dad's Opinion - no, hope! - that the Autism Science Foundation is successful at navigating that narrow channel.


isles said...

There is a stunning amount of good research being done - look at the INSAR conference every year - of course there is much more to be learned and I think it will be really helpful to have ASF out there as a force that is truly science-driven. I hope it will gain huge financial leverage so researchers will no longer have to fear angering the lunatic fringe who have come to have influence in Autism Speaks.

codeman38 said...

Even after the town hall about the Ransom Notes ads, many of us on the spectrum still felt that Dr. Koplewicz didn't really understand our concerns. See, for instance, Sophist's post, and this and this post from David March.

GabrielsDad09 said...

Thank you for this post.
I've been disappointed with the complete lack of research in incidents of autism, successful therapies and concrete scientific data on probable causes of autistic disorders. The floodgates should be opening up to fund research and ignite discovery, but this is not happening. I don't understand why. Many parents like me don't either. This leads to groupthink and conspiracy b.s. etc.

Set the vaccine b.s. aside, why do we know so little in 2009?

Most people don't truly understand the mile-wide and mile-deep variations of the disorder. There are "behavior clusters" sure, but that's about it. My 6 year old son is probably autistic like no other child on the planet. I don't know.

It's not like he's got pancreatic cancer, and any MD on the planet from Fiji to Denmark knows exactly what's wrong with him and what should be done next.

This lack of research and understanding opens the door wide open much longer for quacks and snakeoil sales people to make their buck.

I'm relieved that the ASF is being forthright of their mission and that it is staffed by those armed with some level of humility, and with the scientific method.

It's important that we finally step over the side-shows of Larry King, Jenny McCarthy, Oprah Winfrey and get to the hard questions.

With all of it's work ahead of the ASF, like you, I'm not particularly optimistic they'll make a dent.

Anonymous said...

Steve, you close on a very uncharacteristicly low note - Here is One Dad's Opinion - no, hope! I have read all of your posts over the years; this is the first deflated ending I can recall.

Let me ask you. What must this group do in order to navigate that narrow channel? Does this group deserve our support in navigating that channel?

I do feel that an organization is needed to work the issues they profess to take on and a few more. What we have available today for support is below the bar of acceptable standard; we can do better, much better.

Another Voice

Chun Wong said...

I'm glad that this group are going to be focusing on research but I don't think that they can rule out vaccines particularly when people are so concerned about them and the vaccine court have compensated a family (the Banks family) for vaccine induced autism (see
I don't like the fact that many people concentrate on vaccines as the cause but I don't think that they should be ruled out yet!

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