Tuesday, April 13, 2010

ASAN's Reply to My Open Letter

I was tempted to leave the body of this post blank, but let me state more straightforwardly that ASAN has simply chosen not to reply to my open letter regarding the organization's honesty and integrity. That is of course ASAN's right, and nothing unusual need be inferred from its exercising of that right.

For me personally, however, the silence is disappointing. Keep in mind that ASAN, through regular email requests and at no prompting from me, frequently asks for my support, and keep in mind that I have been generally desirous of giving that support. ASAN has done good work in the past—for instance, its rallying of support against the Ransom Notes campaign. And the stated goals of ASAN are ones that, generally speaking, I believe would be beneficial for nearly all autistic individuals.

Nonetheless, I refuse to hold ASAN to any lesser standard than I would hold any other organization that asks for my support, and that includes standards of transparency, honesty and integrity. Speaking bluntly, I have never found ASAN to be a very transparent organization, and as I think this latest incident has demonstrated, ASAN appears to have some work ahead of it if it is going to meet consistently the principles of honesty and integrity.

Going forward, I remain willing to keep an open mind and a tentative eye for ASAN, but that organization needs to realize that if it is going to continue to ask for my support, then in return I am going to seek evidence that it is meeting the highest organizational standards. Lately, that evidence has been very difficult to find.

One final matter: political expediency. I have never myself heard directly from ASAN that it is willing to place political expediency above principles of accuracy and openness, but I have heard far too often from ASAN apologists that various forms of political expediency are at times necessary and valid tactics to be employed against the so-called opposing forces. To that line of reasoning, my reply is unqualified, and it goes like this:

What autistic individuals need more than anything is accurate information, along with acceptance, support and understanding based upon that information. Autistic individuals need accurate information more than they need treatments, more than they need funding, more than they need laws; for without accurate information, all those efforts would be pointless. What autistic individuals do not need is more political and personal expediency. Autistic individuals have suffered a long history of burden from organizations all too happy to practice political and personal expediency at the expense of accurate information—Autism Speaks, DAN, FEAT, Generation Rescue, ASA, the Judge Rotenberg Center—the list goes on and on. Thus it is important to state with unqualified clarity that autistic individuals do not need the burden of suffering from one more such organization—even if that organization happens to be run by autistic individuals.


jypsy said...

Thanks for saying this so well Alan.

Bob Badour said...

Very well put, Alan. Thank you!

Sam Dealey said...

Hi, Alan. Thank you for posting this and your open letter. Seven years later, ASAN seems to continue doubling down on their policy of stonewalling and now apparently "oh, one of our people was abusive? Well it's first-come first served here, so you're out." I had a serious problem with one of their local group moderators last year and after many, many attempts at communication with their management, asking for some conflict resolution, I ultimately wrote an open letter of my own regarding cyber-bullying from their local group manager in Cincinnati.


Sam Dealey said...

I'm sorry... the text of that link is wrong -- the link is correct, but the text is to a copy of a Facebook transaction log I published as supplemental material.