My position on #BoycottAutismSpeaks

There’s a bit of a debate in the autism community concerning Autism Speaks and today I got pulled into a heated Twitter discussion on it.  It’s a bit ironic that a group of people characterized by difficulty communicating with the majority population would choose to have this discussion in 140 character bursts but hey, that’s just how we roll.

The thread that was picked up today began with a Tweet from John Robison asking whether we could advocate for something instead of against something.  This caused some backlash and I jumped in to try to find some middle ground.  I don’t agree with John that this can be done without bringing attention to the negative effects of Autism Speaks but neither do I agree with the many folks who would simply destroy Autism Speaks today if it were possible to do so.

Speaking to John’s point first, Autism Speaks has been able to whitewash their actions so that the general public thinks of them as the premiere autism charity.  When I ask people to support ASAN or other autism charity, the resources I’m requesting have to come from somewhere.  Nobody I know has wads of spare, unallocated cash and even if they did it would have to be a very small population.  If we are going to get more funding for autism charities that we like, it comes out of some other charity’s allocation.

One of the things we dislike about Autism Speaks is their fear mongering. They make autism a national emergency in order to get what is essentially triage funding.  This diverts funds away from other charities but, I suspect, does so disproportionally from other autism charities.  I came to this conclusion after contacting several of my local elected representatives and being told they don’t have time to talk with me about autism because they work through Autism Speaks.  I now need to explain to them that “autism is indeed important, just not the way Autism Speaks would have you believe, and by the way we actually need your money diverted over here.”  Autism Speaks has one single message and it is painted fire-engine red.  We have a more nuanced message that requires people to think a bit deeper.

Under these conditions I do not believe it is possible for me to have a discussion about autism funding that does not include a component explaining why my request is exclusive of any of that funding going to Autism Speaks.  I’m at a loss to explain to someone funding Autism Speaks why I need them to divert those resources without also explaining what’s wrong.  Because I have much of that discussion in public on Twitter, Facebook and on my blogs, I am going to be one of the voices pointing out the harm done by Autism Speaks.  I absolutely support the boycott because Autism Speaks will listen to our dollars if not our voices.  This is why I purchase Tweetreach reports to track our Twitter events, as well as publicize and participate in those events.

Where I believe I differ from the hard-line crowd is that my goal is simply for autistics to lead the discussion about autism, and by extension to funnel funding through better charities such as ASAN and AWN.  I do not have an explicit goal to kill off Autism Speaks but if what I do want to do – build true autism advocacy to the same heights – is successful, the result will be the same.  So when I can promote our cause without mentioning Autism Speaks, I will do so.  When that’s not possible, no punches will be pulled.

Which brings me to addressing the points raised by the “kill Autism Speaks” crowd.  Someone on Twitter today compared us to Martin Luther King and Rosa Parks.  There are certainly parallels and whether people working on behalf of Autism Speaks have hate in their hearts or not, the outcomes are hateful.  The autism community is battling against deliberate and benign hate, disenfranchisement, and prejudice.  Real, measurable harm is inflicted on this community by Autism Speaks.  One cannot look at the facts and deny that.  (Thanks, for assembling a list of grievances with references.)

But Martin Luther King said “Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that.”  Dr. King didn’t seek to overthrow the entire government, just those aspects that perpetuated oppression.  John Robison, one of autism’s celebrity activists, tried to change Autism Speaks from within by working with them for several years and speaking out to their leadership on our behalf in an attempt to change their policy and direction.  Members of our community sent him death threats.  Personally, I think we need to stake out much higher ground before we start comparing ourselves to Martin Luther King.

According to the 2010 census, the Black or African American population stands at 12.6% of the US total.  The oft-cited rate of new autism diagnoses is 1 in 88, or about 1.14% Not all of those people are aware of our issue with Autism Speaks or support us if they are. We simply do not have the numbers to rise up and stage sit-ins (stim-ins?) at the local diner. We barely have the numbers to stage an effective boycott.  Martin Luther King had to fight smart because he didn’t have the numbers to do anything else.  We’ll need to fight even smarter.

To win, we’ll need to enlist sympathetic neurotypical people to our cause in large numbers.  I believe – and apparently I’m in the minority here – that means we are better off capturing Autism Speaks than killing it.  In the Twitter chat I mentioned infrastructure and was asked to explain but that’s hard in 140 characters. (And I was a bit overwhelmed and overstimulated by the response.)  I’ll try to do that here.

Several variations were made in the chat of the assertion that if Autism Speaks goes away, that money will then flow to alternative organizations.  I believe that’s naive and optimistic.  Much of the money Autism Speaks gets is because of who they are.  Bob Wright was chairman of NBC Universal. Many celebrities and industry people are in his debt.  He wields a lot of power, even now. The organization was initially funded by a $25 million dollar gift from Bernie Marcus, a friend of the Wrights.  Many people don’t just give money to Autism Speaks out of a sense of philanthropy, but because they network with other high-profile people through that organization.  That $65M budget happens in large part because of those connections.  Take that network away and much of the money vanishes.

Now, I’m not arguing we need Autism Speaks because of their connections.  Only that we should be thinking at this stage of infiltrating that network and making our own connections.  When we can contact our local representatives without being turned away, then we’ll have some chance at influencing public policy in the absence of Autism Speaks.

In addition to their contacts and funding, Autism Speaks has what we in the IT industry refer to as “institutional knowledge.”  This is people who know both the subject matter and the institution itself.  One of the things I see quite often is companies who assume they can fire long-time employees and replace them with a kid right out of school.  The assumption is that anyone who knows the subject matter is plug-compatible.  The reality is that people rely a lot more on who they know than what they know.  (Perhaps not so much in our crowd, but generally true in any large organization.)  Autism Speaks has literally thousands of contacts with elected officials, policy makers, lobbyists, healthcare providers, fund raisers, donors, volunteers and so forth.  If we are to have even moderate success, we will need to work with many of these same people and, for the most part, we don’t even know who they are.

If we are to work smarter not harder, then it seems to me we need to convert many of the people both in and outside of Autism Speaks to our cause.  If we make a martyr out of Autism Speaks, then many of those elected officials, policy makers, lobbyists, healthcare providers, fund raisers, donors, and volunteers will be too upset with us to listen to us.  In their minds we will have killed off something that was good and from which they benefited by association.  Forcing people to leave Autism Speaks by killing it is completely different than persuading them to join us on the merits of our argument.  John feels so strongly about this that he advised no negative attacks and instead focus only on promoting alternatives.  The example he cited was negative political campaign ads.  I sympathize.  I am not by nature a muckraker. I fall in the middle.  I don’t mind kicking Autism Speaks a little bit but the moment I have access I’ll focus on that.

There’s another point that we cannot lose sight of but doesn’t seem to be on our radar yet.  The web site lists the percentage of budget that goes to family services: 3% = Family Services grants & awards: $2,048,552.  That 3% is unquestionably a pitifully small proportion of money allocated to services.  On the other hand, that’s $2M in services that we’ll need to replace if in fact we kill off Autism Speaks.  Can we absorb that many family services into the existing organizations?  Or is the plan to abandon those families because “the needs of the many outweigh the needs of the few”?  In all the rhetoric about “Autism Speaks needs to go away,” I have yet to see anyone even mention a safety net for the few people Autism Speaks manages to serve, let alone propose a coherent plan.  I don’t want to be the person kicking the legs out from under the table on these families.

With all that in mind, here’s my position:

  • My primary goal is for autistic people to lead the national discussion on autism.  The way in which Autism Speaks harms us is through their influence. When we have influence, the threat is diminished or eliminated.
  • I support the boycott not out of a desire to tear something down but rather because it draws attention to our cause and opens doors to talk with media, representatives, etc.
  • If we have an equal chance to be heard (and do a good job of representing ourselves), I believe that Autism Speaks will either modify its policies according to our desires or wither up and die.
  • I believe we as a community need to be more organized if we are to replace Autism Speaks.  To topple it without a plan to replace it is at best shortsighted and at worst harmful to our community.
  • I believe we MUST convert some of the Autism Speaks infrastructure to our cause rather than abandon it. That infrastructure doesn’t stop at the paid personnel but includes the network of donors, volunteers and policy makers.  It includes whatever portion of the organization is devoted to family services.  It includes contacts and multi-year donor commitments.

As to what to do, my game plan is simple.  For every contact I make asking a sponsor to stop supporting Autism Speaks, I make a corresponding call to an elected representative.  When we do a protest, I seek to make it as effective as possible by actively soliciting participation of the media and my representatives.  To the extent I can, I support truly autistic-friendly organizations financially and through volunteer work.  As always, I continue to campaign for compassion-based social change and The Big Us concept.

That this philosophy turns out to be controversial in our community was a total surprise to me.  I’ve reconsidered my position in light of that revelation but remain convinced that my purpose is to build and not to tear down.  I hope that there enough people who feel this way that we can make some inroads into growing the network and making valuable contacts while the window of opportunity is open.



This entry was posted in Advocacy, Q&A, Society and tagged , , , , . Bookmark the permalink.

2 Responses to My position on #BoycottAutismSpeaks

  1. Manda QoP says:

    The page has been taken over by a rhinoplasty page 🙁

  2. alexforshaw says:

    This is a well-argued and rational position. After my own initial knee-jerk reaction to the messages coming out of Autism Speaks I am coming to the conclusion that people who support AS (and quite probably a majority of the people directly involved with the charity) do want to help autistic people. They are probably acting according to the best of their knowledge, but that knowledge is incomplete.

    The important thing is to educate these people. First we need to convince them that as autistic people we know what we are talking about. There is a natural tendency to dismiss voices that contradict what you believe, so we need to build up credibility in THEIR eyes so that they will start to take notice of what we say. Your game plan of getting your representatives and the media on board sounds like the way to go to achieve this: these are people with the reach to get OUR message beyond the limits of the online autistic community.

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.