Science based autism charities?

1 Jun

Science Based Medicine is a blog devoted to, well, discussing science based medicine. The subject of autism comes up fairly regularly, usually in the context of the vaccine/autism discussion. A recent SBM piece by Dr. David Gorski, Nine differences between “us and them,” nine straw men burning, caught my eye.

Dr. Gorski comments:

Alison Singer (@alisonsinger), President of the Autism Science Foundation, arguably the only truly science-based autism charity in existence at the moment,

I was about to write a comment when I decided that a blog post was more in order.

The Autism Science Foundation is a science-based autism charity. But, is it really arguable that there are no other truly science-based autism charities?

The answer (as you can likely guess) is “no”. Two names come to mind readily, but I don’t suggest this is an exhaustive list.

[Correction–it has been pointed out to me that both the foundations below do not accept public donations. Thus, they are not “charities”. That would leave the Autism Science Foundation as the one major science based charity]

Who is the largest autism charity? A lot depends on how you define size, but let’s just consider money. Who has the most and who spends the most? If you are thinking Autism Speaks, you are incorrect. The answer is the Simons Foundation.

The Simons Foundation has two main focuses, Math&Science and Autism. They run one of the better blogs on autism science. One of the recent members added to the Interagency Autism Coordinating Committee is from Simons. Most of the autism charities you might know of are working on the basis of taking money in and turning around and spending that money. That is part of the reason why you know about them, they have to keep their name in the public’s eye to get donations. Simons works from an endowment, a foundation. A big one. As of 2008, Simons had assets worth over US$1 billion ($1.108B if you want details). From this endowment, they fund research. After the U.S. Government, they are likely the largest source of autism research funding in the world.

If you check the Simons Foundation website and blog, you will see a decidedly science oriented organization.

The Nancy Laurie Marks Foundation also supports a number of science projects, as well as some advocacy efforts. The Nancy Laurie Marks Foundation was working from an endowment of nearly $US90 million in 2008.

I will highlight two paragraphs from the Marks Foundation “about” page:

The principal goal of the scientific program is to achieve a deeper understanding of the biological basis of autism, focusing on genetics, synaptic chemistry, the neurobiology of communication, systems biology and the physiology of movement. The Foundation funds peer-reviewed research, the development of collaborative investigator projects, and research fellowship programs. Through sponsorship of scientific conferences, symposia and workshops, the Foundation seeks to encourage innovation and provide a springboard to generate new avenues of shared inquiry.

and

The NLM Family Foundation actively seeks partnerships with other grantmakers sharing its goals and fosters collaborations between investigators and organizations that have a direct interest in developmental disabilities. Of particular interest are projects which challenge stereotypes that stand in the way of people with autism realizing their potential, such as the misconception that people with autism are invariably mentally retarded and have minimal interest in social interaction. Challenging such stereotypes will lead to a greater public understanding of autism and widen the scope of scientific inquiry.

The Nancy Laurie Marks Foundation recently donated US$29 million to Massachusetts General Hospital to start a program focusing on the needs of autistic adults.

I am regularly taken to task on this blog for focusing too much attention on issues which are ever increasingly less relevant to the autism communities. I think Dr. Gorski’s comment is not a failure on his part, but, rather, on mine. While I have discussed both the Simons and Marks foundations, it is well worth the time to discuss them again. Any real change privately funded research may bring to the lives of autistics will come from groups such as these.

9 Responses to “Science based autism charities?”

  1. Sullivan June 1, 2010 at 20:31 #

    Correction–it has been pointed out to me that both the foundations below do not accept public donations. Thus, they are not “charities”. That would leave the Autism Science Foundation as the one major science based charity

  2. Sullivan June 1, 2010 at 20:33 #

    I will also add–

    I was once asked to name a major American autism charity that was doing good work and was not involved in promoting pseudoscience. At that time (pre Autism Science Foundation) I was unable to do so.

  3. Brainduck June 2, 2010 at 00:14 #

    National Autistic Society in the UK is good, and does not have much truck with quackery: http://www.autism.org.uk/ It does fund some research, but is mostly focused on information, services and campaigning.

    Research Autism (I believe is an independent offshoot of NAS?)is fantastic, and really ought to be better known in the evidence-based autism blogosphere: http://www.researchautism.net/pages/welcome/home.ikml
    It provides excellent, accessible yet technically detailed & accurate discussions of the evidence base for very many interventions, from behavioural to biochemical, and the quackery to the sensible.
    They also fund some research on their own behalf, mostly towards the psychosocial and behavioural interventions end.
    It really is a shining example of wonderfulness, cannot recommend enough. Again, UK-based.

  4. Brainduck June 2, 2010 at 00:15 #

    National Autistic Society in the UK is good, and does not have much truck with quackery: http://www.autism.org.uk/ It does fund some research, but is mostly focused on information, services and campaigning.

    Research Autism (I believe is an independent offshoot of NAS?)is fantastic, and really ought to be better known in the evidence-based autism blogosphere: http://www.researchautism.net
    It provides excellent, accessible yet technically detailed & accurate discussions of the evidence base for very many interventions, from behavioural to biochemical, and the quackery to the sensible.
    They also fund some research on their own behalf, mostly towards the psychosocial and behavioural interventions end. Again, UK-based.

  5. Sullivan June 2, 2010 at 01:43 #

    Brainduck,

    I am very jealous that the UK has the NAS. I wish we had an NAS in the US.

  6. Brainduck June 2, 2010 at 01:55 #

    The NAS is indeed excellent, and despite the efforts of Tomney et el, that’s the big mainstream campaigning organisation here – yay 🙂
    But things outside the USA are ‘in existence’ too, and hopefully the research done here can be applied in the USA too.

  7. Dr Aust June 2, 2010 at 02:33 #

    Talking of Polly Tommey, I see that the website and other promotional stuff for Wakefield’s book carries the following quotation:

    “As a mother of a boy who regressed into autism immediately following his MMR vaccination, I welcome this book unreservedly… Whatever your thoughts on the issue, if you read nothing else at all on the vaccine-autism debate, this has to be the most crucial book you read.” —Polly Tommey, Editor-in-Chief, The Autism File

  8. BA June 4, 2010 at 01:52 #

    I think not including the Organization for Autism Research (http://www.researchautism.org/news/pressreleases/PR112009.asp) would be a mistake. They fund treatment-based research. They are a small charity and the awards are modest but not many people focus on intervention. These are the studies they funded in the last competition:

    The winners of OAR’s 8th Annual Applied Autism Research Competition are below.

    2009 Applied Autism Research Competition Awards

    PI: Jon Campbell, Ph.D.
    Institution: University of Georgia Department of Educational Psychology and Instructional Technology
    Project: University of Georgia-Carolina Autism Resource and Evaluation Center (UGA-CARES): A Collaborative Autism Screening Project Utilizing Web-based Technology
    Award: 2-year, $60,000 award

    PI: Kelly Whalon, Ph.D.
    Institution: The College of William and Mary, The School of Education
    Project: The Effects of a Reciprocal Questioning Intervention of the Reading Comprehension and Social Communication of Students with Autism Spectrum Disorder
    Award: 1-year, $30,000 award

    PI: Carolyn Hughes, Ph.D.
    Institution: Vanderbilt University, Peabody College, Department of Special Education
    Project: High School Inclusion Program for Students with Autism Spectrum Disorders
    Award: 1-year, $30,000 award

    PI: Alexander Gantman, Psy.D.
    Institution: UCLA Semel Institute for Neuroscience and Human Behavior
    Project: Social Skills Training for Young Adults with Autism Spectrum Disorders
    Award: 1-year, $30,000 award

    PI: Audrey Blakeley-Smith, Ph.D.
    Institution: University of Colorado Denver, Departments of Psychiatry and Pediatrics
    Project: Peer-mediated Intervention for Elementary School Students with Autism Spectrum Disorders
    Award: 1-year, $30,000 award (This is a 2nd year award for a previously approved grant)

    PI: Kristi Asaro-Saddler, Ph.D.
    Institution: University of Albany, SUNY
    Project: Writing Instruction for Children with Autism Spectrum Disorders: A Study of Self-regulation and Strategy Use
    Award: 1-year, $30,000 award

    PI: Rebecca MacDonald, Ph.D. BCBA
    Institution: The New England Center for Children
    Project: Using a Direct Observation Assessment Battery to Assess Outcome of Early Intensive Behavioral Intervention for Children with Autism.
    Award: 1-year, $30,000 award

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