A new beginning, or the same old?

There have been quite a few big events happening politically over the past couple weeks – from politicians uttering crude phrases on tape, to a rather…interesting final U.S. debate!  However,  what many people might not have realized was something else happened a couple weeks ago that, for the autism/autistic* community, was pretty important.

Autism Speaks, one of North America’s leading autism organizations, announced the removal of the words “cure”, “struggle”, and “crisis” from their mission statement.

Sounds promising, right? On the surface, sure it does, but, for the moment I’m not so certain that decision will translate into real affirmative action.

For those who aren’t as familiar, Autism Speaks was founded in 2005 by Bob and Suzanne Wright with several goals in mind:  an effort to help their grandson diagnosed with the condition, to be an aid to other parents in a similar situation, and to eventually pour a lot of its funding into finding a cure for autism.  That last point is the most contentious between them and the autistic* community, and the following video seems to be the by-product of this particular goal.  I recommend watching the video until the end for context.

In my opinion, there are many things wrong with the cure vantage point Autism Speaks upholds and that appears in the video, but I’m only going to go over a few of them.

1) Much like gender, race, and sexuality, most autistics, myself included, view autism as a part of their identity. So setting up a video where autism is seen as a separate entity is, I think,  grossly inaccurate, much less an entity that is automatically demonic in nature.
2) Even if it were possible to separate autism from the autistic, most autistics whom I’ve met or read about do not seek a ‘cure’ for their condition. They want to be understood, respected for who they are, and be treated respectfully and fairly. I have yet to see any media from Autism Speaks that promotes this point of view.

3) All of the people speaking in the latter half of the video are either parents and/or related to the persons with autism in some way, shape or form.  What about the viewpoint of autistics themselves? Perhaps none could be found because of the explanation in point 2) above?

There are other issues I could cover re the modified mission statement, but the three shared here give a general sense of my reaction.  Overall, given Autism Speaks‘ past history, the announcement is one action to signal change.  Sure, it’s a good first step, but I’m skeptical.  What are your thoughts on this?

 

(* N.B. – Autistic community = people who identify as autistic [self- or clinically diagnosed]
– Autism community = autistic community + people related to autistics)

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A new beginning, or the same old?

2 thoughts on “A new beginning, or the same old?

  1. Considering I’d never heard of the ‘Autism Speaks’ organization before reading this blog and following your links, my initial reaction is that a ‘leopard’ cannot change its spots. OTOH we are dealing with people, so I can hope ‘Autism Speaks’ directors *are* listening and learning to pay attention to autistics as they voice their concerns about the organization. As you note, they have taken a first step in modifying their mission statement, so time will tell.

    BTW, after reading your post I looked briefly on google and stumbled on this video titled ‘Ask an Autustuc #6 What’s wrong with Autism Speaks?’ I found it enlightening. It’s a couple of years old so I wonder if AS has modified its financial goals since it was first uploaded.

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    1. I would like to believe this as well, but as much as I’ve never come in contact with them personally, most of the rhetoric from the past few years is still being spread around the internet, and they haven’t claimed some responsibility for it – yet.

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