Is Change Coming at Autism Speaks?

[IContainMultitudes]

http://jerobison.blogspot.com/2015/12/is-change-coming-at-autism-speaks.html

Today’s news that autists Stephen Shore and Valerie Paradiz have joined the Autism Speaks Board of Directors came as a surprise to many. The announcement follows on the heels of other big news from that organization:

• Mr. Wright has stepped down as chairman and resigned from the board;
• Mrs. Wright has stepped back from the organization after a cancer diagnosis;
• President Liz Feld has announced she will be leaving soon;
• Chief Science Officer Rob Ring has announced his resignation.

It’s possible that a new day is about to dawn for the largest and most controversial autism organization. For the first time, they have put actual autistic people in positions of power. They may take more positive steps when the top management is replaced (time will tell.)

I certainly hope the organization can change its focus to one that is more constructive, and less demeaning to autistics. I hope we’ve seen the last of the ugly missives like “I am Autism,” Suzanne Wright’s offensive 2013 editorials, and the suggestion that autistic people are somehow MISSING (we’re not.) They’ve got a powerful PR machine. Maybe they can use it to say the right things, for a change.

It’s harder to raise money when there are no villains and demons, but it can be done. Will they rise to this challenge, or fall back on the old ways?

I’m not an insider, so I have no special knowledge, but I have some concerns about the board and some big donors. In the past, a significant amount of Autism Speaks funding came from people with anti-vaccine agendas, and followers of fringe or discredited science. How much influence do those people hold today? I don’t know, but it worries me in light of their history.

It also concerns me that the volunteer base is so heavily dominated by parents. That’s really what the group is: AUTISM PARENTS. Can they embrace actual autistics to truly begin to speak for the community? There are a few autistic volunteers there now, and that’s a good sign.

I wish Valerie and Stephen all the success in the world in moving Autism Speaks onto a healthier course. They join Kerry Magro, Amy Gravino, and the other autistic volunteers who have struggled to turn that ship these past few years. The organization’s fundraising power could do tremendous good, if redirected in a constructive way. Over the past decade, too much money has been wasted on nonproductive science, and too little spent on real deliverable benefit to the community. Critics have said this for years. With the leadership stepping down, there’s an opportunity for the next management to seek a new direction.

Autism Speaks would be wise to focus on this goal:

Develop tools and therapies that benefit the people who live with autism today.

Let go of the genetics, and the pharma studies that may pay off for the next generation. Autism family concerns are today. If the families who funded the science you've done so far knew what it got them, would they fund it again? Or would they look to someone who truly has their interests at heart?

I hope they succeed.

Autism Speaks has taken a step by appointing two autistics to the board. Let's see what happens now. Will Autism Speaks Listen?

 

[ancusmitis]

I'm a little skeptical about the concept of changing a power structure from within. Especially here, since it's an organization created specifically by non-autistics for the benefit of non-autistics, in the sense that NT parents with autistic children hope to enjoy some improvement of their situation without necessarily granting any benefit to the children. Autistic adults as a logical necessity aren't even in that picture. I think there's just too many people at that organization with the wrong idea and the wrong goal, and even a total leadership replacement will not overcome their inertia. Too much improvement at once would probably doom the organization itself; if people in the right leadership positions recognize this, they will stop any positive changed dead in its tracks.

Sorry to be so pessimistic, but I just can't imagine an organization becoming so divorced from its fundamental purpose. It would be as if the Roman Catholic Church had abandoned the concept of a supreme being. For reference, even just switching to the vernacular mass caused many Catholics to break away from that church. Or when the Mormons abandoned polygyny, they picked up their own breakaway sects that still exist today. So imagine the leadership of these organizations--and I picked them because they have a definite reliance on their own internal hierarchy--imagine if their leaders just flipped right over on their most fundamental aims and beliefs. Would those beliefs really just go away?

 

[AGXStarseed]

As much as I dislike Suzanne Wright for the hateful and fear-mongering actions she's committed in the past, I myself have lost family members to cancer and so do sympathise for her at least for this; cancer is not an illness I would want to wish on anybody.

As for this article, I sure do hope that Autism Speaks changes for the better.
Another good choice would be to replace that puzzle piece that has annoyed the Autistic community for so long.