October 21st, 2016

The Future Of Autism Speaks

Autism Speaks’ recent decision to drop language about a cure from its mission statement could be self-serving. A cure is medically unlikely, widely rejected by Autistic advocates, and increasingly behind the policy narrative of what autism is and what to do about it. That makes it easy to read this situation as less altruism than a desperate attempt to cling to relevance. However, an act doesn’t need to be well-motivated to have good consequences. This is an opportunity for Autism Speaks to drop its position as the leading promoter of eugenics in America today and join the other major intellectual and developmental disability organizations in doing the hard work of inclusion and civil rights. If Autism Speaks makes real, substantive changes to how it operates and what it funds, it will immediately find itself operating in the realm of conventional disability nonprofits, which is vastly different from its current milieu. It would behoove the rest of the autism community to welcome the organization into the fold with open arms if it survives the shock of a change that would be drastic.

The fundraising challenges would hit hard and fast. People like to fund one-time solutions much more than ongoing maintenance. If Autism Speaks chooses to become a more useful disability organization, it will inevitably collide with that reality. Disability doesn’t go away. Disability supports are thus, by definition, long-term issues. They are not finished after one round of funding, and this can make it challenging to fund them at all. Problem-solving, taking care of the matter once and for all, lends itself well to glossy advertising, awareness campaigns, and groundswells of public support. Campaigns for long-term solutions are more complex. They tend to take longer than a tweet or a slogan to explain. They struggle with running up against resentment or gradually dying from the public’s apathy. There is nothing less sexy than sustainable, long-term supports for needs that are not going away in the foreseeable future. If Autism Speaks changes, it will likely find its fundraising efforts irrevocably altered and significantly more challenging.

The organization will also have to come up with safe ways of dealing with its following. If there is any genuine will to change in its current leadership, it will have to navigate the dilemma it created. By catastrophizing for years about a disability that is probably nothing new and associating with, or at least notably failing to distance itself from, such disreputable characters as antivaaxers and the JRC, it has attracted a membership that includes both ordinary families trying to do right by their children and extremist, fringe elements. If Autism Speaks changes so fast that people who, for instance, use dangerous, quack medical treatments on their children break off from the organization, vulnerable people could become the schism’s collateral damage. Children and vulnerable adults might suffer serious harm if families with such irresponsible caregivers become more isolated from people who could serve as moderating influences or contact the authorities. However, if the leadership fails to push for change hard and fast enough, any existing chance at a clean slate with people who subscribe to the neurodiversity paradigm will quickly dissipate. If Autism Speaks wants this shift to move it toward credibility with Autistic advocates and others who want people with disabilities accepted, it has to continue taking noticeable steps in the right direction.

If this change evidences good intentions among the new leadership, the inclusion-minded people within the organization are in an unenviable position.  It isn’t clear that they can both enact a meaningful transition and hold the organization together. However, it’s hard not to hope that this is more than branding. There may be potential for Autism Speaks to take on a new identity. Maybe “solutions” could include assistive technology research, development, and funding. Whether this is motivated by the hope of doing good or the desire to avoid obsolescence, more people with expertise in fundraising, grant-writing, and advertising on the side of full inclusion can never be a bad thing. If Autism Speaks changes genuinely, and fast enough to make this statement mean something, people who want to see a greater realization of disability rights and disability justice would be unwise to turn up their noses at it. This movement has enough work to do and ground to cover that there are plenty of tasks for every willing set of hands.

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