Thursday, November 4, 2010

Jabberwocky of the Day : ASAN Protesting Autism Speaks Walk (Again)

The "Autism Self Advocacy Network" is at again, this time planning to protest the Autism Speaks Walk on Saturday in Washington D.C.  While Autism Speaks is not exactly my favorite autism organization, I really have a hard time understanding exactly why these young aspies feel the need to protest at a fund raising walk and what they hope to accomplish.

If you have ever been to one of these walks, you would know that they are mostly made up of  parents whose children have autism as well as their families and friends.  I think it would be safe to say that the majority of the people at these walks are people whose lives' have been impacted because of a child's autism.  These are people who take autism seriously and are doing what they think is a good thing to help everyone who is affected by autism.  They are not going to take kindly to being heckled for supporting what they feel is a worthy cause.

So, ASAN's planned protest begs the question, what exactly do they hope to accomplish?

The people at the walks are not ignorant of autism and certainly don't need their awareness raised - they are quite aware already.   I am starting to think that ASAN organizes these protests because they don't have any other better targets and they feel the need to protest something.

But, to be fair to ASAN, I went looking for the specific reasons that they are protesting these walks, but all I can find are reasons like the following -
The group of protesters will be protesting the lack of funding that Autism Speaks spends on funding services for children and adults with autism, as well as the fact that they are researching a prenatal test for autism to encourage soon to be parents to abort fetuses of children who may have Autism. 
So lets talk about these reasons.

The first reason is slightly valid - Autism Speaks does not spend very much funding services for children or adults with autism.  But, and this is the important part, they never said that they would.  According to the organization's site, funding services is not their primary mission -
We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.
So I am not really sure what ASAN's beef is.  You can't just go up to an autism non-profit and say "Hey, I have autism so I should decide how you spend your contributions."  Autism Speaks is very clear about how they are going spend the money that they raise.  People who give money to Autism Speaks do so with the understanding that it will be used to pursue the goals of the organization.

If ASAN doesn't like the goals, then the proper course of action is for them to discourage their members (and anyone else who will listen) from donating to Autism Speaks.  They should set up their own non-profit and and do their own fund raising.  If people agree with what ASAN plans to do with the funds, then they will donate - if they don't then they won't.  But it is completely wrong for ASAN to try to misappropriate funds given to Autism Speaks for its own agenda.

As of the second reason, that Autism Speaks is trying to develop a prenatal test for autism with the goal of aborting all children with autism, well, I think the following picture sums up my thoughts on the matter.

Any person with more than half two working brain cells should understand that the goal of genetic research is to find answers as to what causes autism so that better treatments can be found.  If you don't understand what something is or what it does then it is very hard to come up with an effective treatment.

The goal of genetic research is not to commit genocide against some theoretical autistic race.  Autism is not about civil rights or about protecting some different race of autistic people.  Autism is a mental disorder and people who suffer from it need help.

If anyone knows of any other reasons why ASAN is protesting Autism Speaks, feel free to leave a comment and tell me what I missed.  But, from what I can see, ASAN is doing nothing more than behaving like an immature adolescent.  Their goals are certainly not in the best interests of people who are disabled by their autism and I have to wonder what exactly they think they are going to accomplish.

And if they think that heckling people at an Autism Speaks walk is going to get people to take them seriously, they are very badly mistaken.  Because from my perspective, they are doing nothing more than being a nuisance and getting in the way of the people who are trying to solve a very serious problem.


  1. One reason you missed is that ASAN (and other like-minded neurodiversity organizations) are too small, inept, etc. to raise the capital necessary to pursue their own goals. Therefore the resources of autism speaks' are very seductive and by protesting autism speaks by their logic, they hope to take it over by infiltration and to spend the ready-made capital for their own means.

    They have already succeeded to a degree as Laurent Mottron has received a half million dollar grant, yet this is not enough for him and he has stated he wants to become the head of autism speaks (or possibly all of autism research) and change it. They got J. Robison, a high school dropout on the scientific advisory board along with all the M.D. and Ph.D. scientists. Alex Plank has received funding for his videos when he is not a serious filmmaker going to film festivals to sell his films. Also, no organization that would fund the arts would consider funding Plank's films. This is why they insist that persons with autism be appointed to the board of directors of AS, though they misunderstand that board members engage in fund raising and often have very little power in the organization itself as Jon Shestack, one of the board members who founded Cure Autism Now(which later merged with AS) has pointed out to me.

    Bob Wright and others worked hard to acquire the capital that AS has and it is easier for ASAN and other organizations just to take it over than to earn their own, so this is in a nutshell why the protest AS or at least one reason.

  2. Hi Jonathan,

    You are right that Robison is on the medical advisory board partially because of ASAN. The lack of a person with autism in a high position at AS used to be one of ASAN's complaints (if I remember correctly) and they dropped it once he was appointed.

    The Plank videos are just nepotism on Robison's part - I believe that Robison Jr is involved in making those videos. Those videos are, incidentally, the reason that I am highly unlikely to ever donate to AS or participate in their walks again. I would have a real problem with my donations being spent on that.

    But as for Mottron, I didn't think the Dawson/Mottron faction got along with the ASAN crowd so I am not sure they would consider that a success.