ASAN’s Ethical, Legal and Social Implications of Autism Research Symposium Goes Live

10 Apr

The Autistic Self Advocacy Network (ASAN) hosted a symposium on the Ethical, Legal and Social Implications of Autism Research recently. They are now making it available online. See the message below:

Dear Friends:

This week, the media reported that over $1 billion has been spent over the course of the last decade on autism research funding. During a time of constant budget cuts and increasing fiscal pressures on government, this is an astonishing sum. What have we purchased for this investment? How successful has the autism research agenda been in making the American dream a reality for Autistic people and our families? Has our society discussed the ethical, legal and social consequences of how autism research findings may be used? We think these questions are worth asking, and with your help, we think it is past time to get more people involved in the discussion.

Last December, the Autistic Self Advocacy Network joined with the Harvard Law Project on Disability and the Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics to hold a symposium on the Ethical, Legal and Social Implications (ELSI) of Autism Research. Supported by a grant from the Administration on Developmental Disabilities, the ASAN ELSI Symposium served as the launching point for a robust conversation about changing the way our society approaches autism research. From our partnership with federal research funders to get self-advocates on grant review panels to growing attention to ethical issues on topics like prenatal testing, self-determination in service-provision and more, the need to introduce values into our national autism research dialogue remains stronger than ever.

Over the course of the month of April, we will be releasing captioned videos of December’s ELSI Symposium. The first is already available on our YouTube channel. You can help us get the word out by watching it alone or with your friends and colleagues, sharing it on facebook and twitter, and starting to talk about these things in your own community. The time has come for our voices to be heard.

Nothing About Us, Without Us!
Ari Ne’eman
Autistic Self Advocacy Network

3 Responses to “ASAN’s Ethical, Legal and Social Implications of Autism Research Symposium Goes Live”

  1. McD April 12, 2012 at 10:37 #

    The subtitles don’t match up to what is being said, and sort of jump around all over the place. To the extent that subtitles for the previous speaker were being shown for the following speaker. It would be appreciated if they could be correlated for those of us who need to read the words to follow the narrative. A file suitable for playing as a podcast would be a good idea. It was just too long to sit and watch. Better to play while doing the house work or similar.

    I did enjoy the talks that I listened to. One speaker made an offhand comment about DTT being used to teach “fake laughing” which is just so silly on a few levels – if the kid understood the concept of laughing at something that was not funny they would be beyond DTT as a technique; and then no behavior analyst would consider that fake laughing is a valid behavior at all. The speaker was attempting to make their point about not introducing bias into interpreting the results of studies, by doing exactly that – making an apparently socially acceptable prejudiced view of behavior analytic methods. She had just shown a few slides about “meta-cognitive” skills. I challenge her to find the term in behaviour-analytic studies. Keeping apples with apples and oranges with oranges would be a good idea.

    Do these aspies, who are capable of functioning under verbal contingencies, really think that evil behaviour analysts would attempt to use DTT on them? (And I am speaking as a diagnosed aspie). Cripes.

    On the other hand, that is where Matthew Israel loses much of his support as well. He uses punishment on kids who are capable of understanding verbal contingencies. Then to make matters worse, he breaks the contingency between the target behavior (the only potential justification for what he is doing, if no other method has worked) and the punishment, turning it into an exercise in learned helplessness or torture. Every behavior analyst I know of, on learning what really happens at JRC is totally disgusted (Isreal has a really good PR system that includes pulling the wool over ABAI members).

    So I guess while I can get pissed off at people misrepresenting behavioural therapy to the extent that kids are missing out on learning basic skills due to ignorance. Matthew Israel looms out if the mist to warn us what happens when someone forms a cult of personality and employees don’t have the option of objecting. The sooner that guy is a historical footnote, the better.


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