June 24, 2007

Injecting Sense into Autism Speaks, Part 3 - Alternatives

Wade has posted part three of Arrogance and Assimilation, his three part series on Autism Speaks.

In it, he discusses The Autism Society of America and the shift of their focus back to the ideals that Bernie Rimland had when he started both ASA and the Autism Research Institute.

Is ASA looking to step into the breach and be the large organization that will pick up the biomed torch?

Go read Wade's post, then come back and read the rest of this one.


Today on the Evidence of Harm list, David Humphrey, ASA board member, left the following post on a thread discussing ASA. ASA recently added Stephen Edelson and Martha Herbert to their board, both of whom are members of 'our team':

ASA is changing. The description of a loosely former network of chapters that pretty much operate of their own is correct.

The national ASA is made up of a Board of Directors democratically elected by ASA membership except for 2 appointments (I am one of the appointments). This group acts much more decisively and raises its own money. It does represent the 120,000 families that are members of the local and national chapters.

In the recent ASA national and regional election Steve Edelson of ARI and Doreen Granpeesheh both won against strong ASA chapter leaders.

Bernie Rimland founded ASA. They last formal action of his life was to negotiate with ASA and ARI a far reaching agreement in a Memo of Understanding.

I discussed this at length with Bernie and Steve Edelson - for those of you that knew Bernie - his vision was incredible - and he didn't compromise.

He saw a new future for ASA that would unite the parent community around TREATMENT NOW and meaningful research that improved the lives of families.

He saw ARI continuing its bold advocacy and sponsoring promising emerging treatments.

As a board member of ARI and well I am committed to both of Bernie's goals.

The national ASA accepted the MOU with Bernie 13-0.


It was not a strategic decision.

It was the right thing to do. Decided by good people.

The recent MOU with Easter Seals will be announced July 12th and will continue to define the future. The announcement will bring a new wave of changes we all have been advocating.

The ASA options policy is to respect all parents opinion and treatments as long as it does not create obvious harm.

ASA is an easy target since each chapter can make a mess out of unity and openness.

ASA will emerge into how Bernie sees it - provided we do this together.

If ASA does not work - it will take a long time to create something else in its place.

David Humphrey

David is right in his estimation of Bernie. Bernie was a put up or shut up guy. If ASA was not on board with the program, he would have dismissed them, as he did for years, until they came back to the table just before he died.

The Autism Charity shuffle that is currently going on needs a score card to keep track of. I might just post something that can help us all sort out who is who and what they believe and are doing.

In the mean time, Autism Speaks still (arrogantly) remains silent on the criticism, Jon Shestack has taken a detour to argue with some of the more unforgiving voices in the neurodiversity movement (a path that usually yields few results of understanding or consensus and becomes difficult to extract oneself from) and we all wait for the word of the Special Masters.

If the Evidence of Harm movie is a hit, then I think that we have a sequel.

1 comment:

jon Shestack said...

Well, you're right. It was kind of a detour. I just got on this very uncharacteristic typing jag and went at it with some of the ND folks on Autism Vox.It was probably not a good use of time, and certainly didn't change any minds.
I finally just quit typing and that seems to have helped considerably.