I really couldn't care less about what ASAN has to say about "ethical" implications of autism research (no genetics/autism research) or what they think about "appropriate and inappropriate intervention goals" (no ABA) because most of their positions on those issues are completely nonsensical.
You have only to look at their recent arguments on wandering in autism or Ari Ne'eman basically accusing a presenter at the IACC of supporting eugenics or ASAN's opposition to passing the Combating Autism Act and their continued opposition to renewing it to get a feel for what sort of nonsense they endorse.
But what I did find very interesting was the announcement that they put out afterwards -
The Autistic Self Advocacy Network's Symposium on Ethical, Legal, and Social Implications of Autism Research, funded by the Administration on Developmental Disabilities, was a huge success. The symposium video will be made available in the coming weeks with captioning. We'd like to thank our co-sponsors, the Harvard Law Project on Disability, the Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics and the UNESCO Bioethics Chair, American Unit for helping to make this event possible.
Our conversation was broad and wide ranging. Perhaps the most interesting characteristic of the Symposium was the people that came to the table. Our participants - split evenly between self-advocates and researchers - identified a wide number of ways to help advance the inclusion of Autistic people ourselves in the research process. From Community Based Participatory Research processes to greater inclusion of Autistic adults on IRBs and Grant Review panels, a number of actionable next steps emerged from our discussion. ASAN will be following up on this through a series of targeted policy briefs and collaboration with our federal partners to make those ideas reality.
One of the key issues to emerge out of our conversation in Cambridge was the inclusion of Autistic people and other people with disabilities as grant reviewers on federally funded grants. In response to our symposium, several key federal funders have offered to work with ASAN to identify Autistic adults and other people with disabilities interested in serving on forthcoming federal grant review panels.
As a result, we're issuing a call for resumes from Autistic adults and other people with disabilities who believe in the civil rights/social model approach to disability and want to ensure that self-advocates are represented in grantmaking. Please include any areas of expertise within your resume. Resumes can be sent to info@autisticadvocacy.org with the Subject line GRANT REVIEW.If you had any doubts about what ASAN's agenda was or who they represent, the second to last paragraph should clear it up for you. ASAN is only interested in your views on autism and having your input for the grant making process if you believe in the social model of disability and consider autism to be some sort of civil rights movement.
Presumably if you, like me, think that autism is far more than just a social or civil rights problem, ASAN does not want you included in the process.
So, what do you call it when a group that claims to represent a large group of people systematically excludes people based on their "beliefs"? What do you call it when a large part of that same group of people who are being excluded are disabled to the point that they have trouble advocating on their own behalf?
The think the appropriate word is discrimination.
This bit of nonsense was so bad that even Sullivan from Left Brain Right Brain, a strong neurodiversity advocate and staunch supporter of ASAN, said that this sentence should not have been there.
I also have to (almost) laugh at how blatantly obvious this call for volunteers is. They are basically saying that they going to try to interfere with the scientific process to put a halt to anything that they don't agree with by getting people with certain views appointed to key positions.
Oops, I'm sorry, maybe that was a little too blunt. Maybe I should have that they want to put a stop to any unethical research. You know, the research into the biological and genetic mechanics of autism and behavioral treatments that hold the key to improving the lives of countless children with autism.
Well, that didn't sound any better.
I wonder if anyone has explained to ASAN what censorship is or, for that matter, how the scientific process is supposed to work. Because science is supposed to be about finding out what the reality of a situation is - not about only allowing the bits that fit your preconceived notions of what something is. You certainly can't get to the reality of something like autism by ignoring the reality of what autism is for the majority of people who have it. For these people, autism is far more than just a civil rights movement.
The good news is that ASAN is almost literally throwing away what little credibility they have left each time they pull one of these stunts. And since their short history is full of these sorts of incidents, they shouldn't have much credibility left.
Maybe someday ASAN will grow up and stop acting like a bunch of rebellious teenagers. Maybe someday that will actually take the time to understand the needs of everyone with autism instead of just considering what is in their best (self) interests. Maybe they will take the time to come up with policy suggestions that will actually help rather than hurt children with autism.
And maybe pigs will fly too.
I was amazed that Sullivan could actually get something right, considering what his track record has been in the past. We should commend him for at least this.
ReplyDeleteMaybe someday ASAN will grow up and stop acting like a bunch of rebellious teenagers.
Most of them probably are teenagers, or like Ne'eman, in their early 20s, or graduate students not much older. I realize that Meg Evans who is older is an exception. So, there is really no discrepancy between their chronologic age and behavior that younger people (I'm in my 50s) often display. It makes them less credible as they don't have enough life experience to understand the hardships of autistic persons in the workplace as Ne'eman himself has demonstrated in his eliminating social pleasentries suggestion, when he himself has never had paid employment of any type.
I'm glad that they have finally shown their true colors. Of course they may edit the comment or delete it alltogether from their web page, as was the case with Ne'eman when I exposed him about being less than truthful about his statements regarding whether or not he believed autism was a disability.
Aside from this, I don't understand why there is a need for autistic people to be researcher reviewers. John Robison, whose diagnosis is questionable at least to me, is a high school dropout yet he gets to review federal grants (as well as autism speaks) along with M.D./Ph.D. scientists. Steve Jobs was a brilliant guy who accomplished a lot, but he did not review cancer grants. People don't get to review research on antibiotics just because they have an infection.
Apologies for the somewhat verbose comment, but there was a fair amount I have to say on the issue.
Hi Jonathan,
ReplyDeleteI'm right there with you - most of the ASAN members that I have run across don't have the life experience to understand any part of working for a living, raising children, or generally living in an adult world.
Although I don't thinking having people with autism involved in research is a bad thing per se (unless their name is Michelle Dawson). But I think the key point is not that they have autism but rather that they understand what it is like. So getting anyone who has a basic practical understanding of autism involved in the process is good.
That understanding of autism can avoid silly research like something that I ran across earlier today -
In the current study, Ingersoll found that toddlers and preschoolers with autism who were taught imitation skills made more attempts to draw the examiner's attention to an object through gestures and eye contact, a key area of deficit in autism.
After reading the article, I wanted to say no, really? If you manage to teach a skill (imitation) that relies on joint attention then you are going to see an increase ... in joint attention.
No shit. The trick, as anybody who spends time working with children on the spectrum, is teaching the imitation.
The social model of disability promoted by the likes of Larry Arnold from the UK's National Autistic Society is being used as the justification for removing the benefits and significant social care elements from the UK's disabled population. After spending a lifetime promoting the model, he is now finding it used as a weapon to attack us. (We must give him credit for at least fighting back a little)
ReplyDeletePeople like me are bearing the brunt of some trendy academic peacockery from a bunch of individuals whom are self-selected and at the top of the autism functioning range.
It is one of the biggest crocks-of-shite to ever to emerge from the bowels of the cardre of the Politically Correct.
It is the ultimate in deceit from the same gang who promoted a Certain Little Super High Functioning Elf, as a type-specimen of severely disabled autism.
Woeful.