not a puzzle

Today I attended an annual fundraising walk for Autism Speaks with one of my students and her family.  Autism Speaks is a national organization that funds research into causes and treatments of autism. The picture below shows protesters of the event. The protesters are from ASAN (Autistic Self-Advocacy Network), a group that opposes biomedical approaches to dealing with Autism and promotes the acceptance, tolerance, and the value of “neurodiversity” and emphasizing that autism is part of the natural range of human neuro-development.  ASAN protests every year and I increasingly value their message.  As the research that Autism Speaks funds comes closer to discovering a prenatal test, we still–as a culture and community–have not fully grappled with the ethical consequences of other prenatal tests, such as the test for Down’s Syndrome, a test that when yielding a positive result also results in a nearly 90% abortion rate (a statistic that I take from ASAN’s flier that was handed out today at the walk).

not a puzzle- A S A N protesters

ASAN, Portland, OR

While I was a participant in the Autism Speaks walk and support biomedical research into the causes of autism, I also support ASAN’s goal of creating a more inclusive and accepting society.  I share ASAN’s concerns around the use of biomedical research to eradicate autism in people who are already fully formed human beings and the eugenic potential of genetics research is something that has already outstripped the capacity of our current ethics.  Perhaps this underscores, more than anything, the need to fund genuine work in ethics.  Ethics in our culture is generally only considered and funded at the level of law and policy.  Any genuine philosophical or speculative research in ethics is left to the minor fringes of academia or relegated to nostalgic religious institutions.

ASAN-Portland

ASAN-National

From last year:

not a puzzlenot a puzzlenot a puzzlenot a puzzle


Copyright secured by Digiprove © 2010 Dominic Le Fave

Comments

comments

  • http://abnormaldiversity.blogspot.com Ettina

    It’s great to hear that ASAN’s protests are making people think!

    I’m an autistic self-advocate, and I’m also planning to go into autism research. Personally, with every study I’m planning to do, I will carefully weigh the ethics, with my knowledge of how my results might affect autistic people. I’m not planning to go into biomedical research, in part because of my ethical concerns. Rather, I’m planning to focus on educational and social research. I’m interested in documenting the effects of prejudice, and also in determining better methods of communicating with severely autistic people (or, more importantly, *receiving* communication from them).

  • http://autistichoya.blogspot.com Lydia

    ASAN is the partner organization of the Academic Autistic Spectrum Partnership In Research and Education (AASPIRE) (http://aaspire.org/) which brings together researchers and Autistic adults to develop research that takes into account not only the interests of Autistic people, but also includes Autistics as equal partners in all stages of the research process and not merely as research subjects. (I’m an Autistic self-advocate.) Research is not entirely opposed to the ideas of neurodiversity or self-advocacy, not in the least. :)

    Blessings and peace,
    Lydia

  • Phil Schwarz

    The real problem with Autism Speaks is not that it funds research.  It’s that it sucks all the oxygen out of the autism nonprofit economy.  Autism Speaks floods media- and mindshare with its massive publicity budget, well-meaning people give to Autism Speaks, 96 cents of every dollar they give *leaves* their local community and is disbursed by a central governance structure that is lacking in transparency and in *representation* within it of autistic people themselves — and then when local nonprofits that are actually implementing programs in the local community come asking for donations, those well-meaning donors have donor fatigue: they’ve already done their part “for autism” by donating to Autism Speaks.

    So I urge you, next year, to take the next step: find a progressive local autism nonprofit to support, and invest the energy you’ve invested so far in Autism Speaks walks, in support of that local nonprofit.

  • philosophographlux

    Thanks, Lydia and Phil for your comments. I remain very interested in the work of the local ASAN group and would like work with AASPIRE. I really appreciate the subtly of both your positions. I also see it as a powerful position for teens and young adults to hear as they learn to be self-advocates. I will definitely “take the next step” and I would love to find a presenter from ASAN to speak at the local high school or present to local teens with autism.