Wednesday, November 27, 2013

ASAN's joint letter to Autism Speaks' sponsors

I see that the Autistic Self Advocacy Network is at it again.  They have recently written a letter urging sponsors of Autism Speaks to withdraw their support of the organization they loathe so much. 

To support their position they use the same old and tired talking points that we've heard from them ad nauseum and not coming up with any new ones.  For any of the uninitiated who happens to read this and are far less jaded than myself, I'll briefly recap: 
  • Autism Speaks has no members of the autism spectrum on the advisory boards or in positions of power to influence their policy.  Now that John Elder Robison has resigned from the science and treatment advisory boards, they are reemphasizing this point as Gadfly predicted they would.
  • Autism Speaks primarily funds scientific research and only spends 4% of their budget on "community services" (whatever this nebulous term means)
  • Autism speaks engages in fund raising using offensive rhetoric. 
  • Autism speaks somehow(I don't understand how) takes money away from communities with their fund raising drives that could go to other things that ASAN regards as more useful than the stuff that Autism Speaks already spends money on.
I've previously discussed the issue that Autism Speaks' supporters are primarily parents who are looking for help for their minor children and parents make decisions for their children and the fact that the 96% of funding on scientific research is a goal consistent with Autism Speaks' stated philosophy and that of their predecessor organizations, Cure Autism Now and the National Alliance of Autism Research.  I'd like to address some more specific points in this post.

ASAN implies that Autism Speaks holds a gun to people and forces them to give them money. and if they stopped doing this, then the communities would have more money for these vague services and objectives and Autism Speaks would have less money that is not being usefully spent.  I don't understand this as Autism speaks is not the government and does not have the power to tax people.  Their donations are only done on a voluntary basis.  No one in these communities who feels money is being taken away from them has to give AS a dime. 

ASAN has invoked their fellow ND, John Elder Robison's name in this protest letter.  Interestingly enough John Robison has chastised me for what he called my unrelenting negativity and not proposing positive solutions to help persons with autism and their families.  Isn't ASAN now doing the same thing Robison accused me of and isn't it ironic they are invoking his name in this letter? 

If 100% of Autism Speaks capital (aside from administrative costs) should be spent on "community services", then what exactly are these services, how should they be funded and how can ASAN (or anyone else who wants them) make their case to the public that they should be funded and has ASAN adequately done this?  I believe the answer is no.  They have claimed (at least at one time) that autism wouldn't even be a disability if it were adequately accommodated.  That if these accommodations were provided for, autism would go from being a disability to a mere "difference".  Yet they have been thoroughly vague (at least in my opinion) as to how this can be accomplished.  How the services they want to spend money would do this and why we would have no need for scientific research to find treatments or a cure. 

ASAN has every right to conduct walks and fundraisers to help raise money for these community services  In this country where we have the free enterprise system, there is no reason they could not raise the millions that Autism speaks has if they could show compelling evidence that these were more beneficial. 
Other than their internship with Freddie Mac program, I don't see any evidence they have ever done this.  They only want to tear down Autism Speaks and people who want a cure for autism rather than offering their own constructive solutions and raising the needed capital and stating how autistic people can be helped. 

They have succeeded to a large degree of the government hearing their voices.  To date, they have four seats on the IACC as compared to the anti-vax movement's one seat and the zero seats held by pro-cure autistics since the IACC's inception.  However, the IACC is largely window dressing and, for this reason, they  haven't been able to get much accomplished by serving there. 

So far they have only seemed to want to take over Autism Speaks and their hard earned capital by infiltration.  They have succeeded to a degree by getting Robison in their organization and the nearly half million dollar grant acquired by Laurent Mottron and company.  The likely reason for this is due to their own ineptitude in acquiring this capital themselves.  Another reason is that most of the people who donate money are parents of children who want a cure for their children and don't ascribe to ASAN's POV.  There aren't enough people with sufficient funds who would donate money to ASAN so they could accomplish these lofty goals. 

In the same vein of Robison's words, I suggest instead of trying to tear down people they don't like that ASAN engage in constructive solutions such as being more specific about how autistic people can be helped, how they can be accommodated and how these accommodations could eliminate any need for biomedical research or a cure.  They could do fundraising walks, give benefits and raise the capital in the same manner that other charities do.  I won't hold my breath though. 

7 comments:

Roger Kulp said...

I thought Cure Autism Now was the original name used for DAN! doctors,a program that associated with the Autism Research Institute,not Autism Speaks.

I think ASAN is just angry that Autism Speaks wised up got fed up with trying to appease neurodiversity.Can you imagine the outcry if the put a pro-cure autistic on the board?We all know what they would be called by the likes of ASAN.

I hadn't thought of the possibility that what ASAN believes is too unpopular for them to raise enough money on their own,and that they might be too inept to do so in the first place.We can only hope this is the case.It's a very pleasant thought.

I don't know if anyone at ASAN has the slightest idea of what kind of services autistics need for day to day living or functioning.Let alone how to provide them.Housing,cooking,grocery shopping,planning a budget,hell even basic hygiene.All the stuff I couldn't do up until a few years ago.

Or those that can hold a job,but can only do the most menial things.

Goodwill is more help to a lot of autistics than ASAN is.

jonathan said...

No, Cure Autism Now and DAN were two separate organizations. DAN was part of ARI and I guess still is. Cure Autism Now was an organization which funded Autism science research along with the National Alliance of Autism Research. They merged in 2005 with Autism Speaks.

Your analysis is probably right on the button. Goodwill is sort of an exploitive organization that provides sheltered workshop type jobs for sub minimum wage. They probably are more helpful to autistics than ASAN but that is not saying much.

Anonymous said...

"They could do fundraising walks, give benefits and raise the capital in the same manner that other charities do."

Paying attention to what other charities do would require caring what other people think and trying to be more like other people. No wonder ASAn doesn't wanna do that.

Jake Crosby said...

"To date, they have four seats on the IACC as compared to the anti-vax movement's one seat..."

If by what you call the "anti-vax" movement having one seat you are referring to Lyn Redwood, you are wrong. When Insel bullied a scientist who challenged him for vetoing vaccine research from inclusion into the strategic plan, Lyn didn't make a peep. Never mind that the scientist is also a board member of her organization! Lyn's president, Sallie Bernard, sits on Autism Speaks' board. It would be more accurate to describe Lyn's seat as an extension of Autism Speaks' representation.

Anonymous said...

The link embedded that's in the sentence in your article, "I see that the Autistic Self Advocacy Network is at it again." no longer works -- it looks as though ASAN may have removed this letter?

jonathan said...

Yeah, the link worked before, they probably removed the letter.

jonathan said...

Postscript to the last comment. I checked ASAN's webpage and they still had the letter, i changed the link and it seems to work now.