12/20/2013

Addressing Criticisms of the Autism Speaks Boycott

A group of autistic people, parents of autistic children, and others have been undertaking a "twitterbomb," calling on corporate and celebrity sponsors to #BoycottAutismSpeaks.  I am part of this effort.  Now that the event is well underway, we've started to receive some negative responses.  I'd like to clear up any misconceptions about what we're doing and see if any substantive disagreements remain.

If you're skeptical or think boycotting Autism Speaks is a terrible idea, please read on and see if this post addresses your concerns.

Q: Don't you all just represent some small, unrepresentative segment of the autism community?
A: Actually, the participants in #BoycottAutismSpeaks are impressively diverse.  There are autistic adults with no children, neurotypical parents of autistic children, autistic parents of autistic children, at least one speech therapist, and people like me, who don't fit into any of these groups.

We do all agree on certain things.  For example: autism is not a disease.  Autistic people aren't missing, as Autism Speaks says; they're right here, listening.  Happiness is possible after an autism diagnosis.  Autistic lives are just as valuable as non-autistic ones.  Autism Speaks' financial decisions and rhetoric harm autistic people.

But some of us describe autism as a "difference" and others as a "disability," and "disability" may have different shades of meaning for us.  Some can't speak, while others can speak unreliably and communicate better through writing, and still others speak just fine.  (However, we don't think these differences matter much).  You will find many ages and degrees of independent living among the boycotters.

We differ in approach, too.  Some seek to address people's preconceptions and persuade them to change.  Others say what they think without diplomacy.  And while we have many problems with Autism Speaks, different individuals may emphasize different ones.

I challenge you to find a group consisting of a larger portion of the autism spectrum, plus parents and other allies.

We don't have a central leader or ideology.  The upside is that, should anyone's Twitter or Facebook accounts be blocked for some reason (as happened to the @Boycott_AS account four times in one day), the rest can carry on unimpeded.  The downside is that we may be expressing many related messages rather than one polished, unified one.

Q: Is a "posAutive" outlook on autism realistic?
A: Some people have the impression that a positive outlook on autism means acting like Pollyanna, seeing autism as all sunshine and rainbows and without any sorrow or struggles.  That wouldn't be a realistic portrayal of non-disabled people or their parents' lives, much less people with disabilities.

But the view presented by Autism Speaks, that autism is nothing but pain, without a single moment of happiness, is equally unrealistic.

We're not saying autism is all sunshine and rainbows. Instead, it is a complex mix of joys, sorrows, and banality, just like every other human life.  To argue that autistic people's lives are all one thing (be it happiness or sorrow), while all other human lives are complex and full of diverse emotions, is to take away autistic people's humanity.

Q: Your entire message is to attack an organization.  Why can't you be more positive?
  A:  If you look at the #BoycottAutismSpeaks tweets, my own included, you'll find that they often suggest alternative places to donate money.  "Please give your money to other organizations" is a positive message.

The misconception that this is all about negativity might come from tweets that characterize Autism Speaks as a "hate group" and similar, while not presenting an additional "support instead" message. This isn't my preferred approach, precisely because it leads people to see one as "negative" and ignore the substance of one's message.  But look at who sends these tweets.  These are autistic adults, many of whom have undergone lifelong bullying and abuse from others for being autistic.  Ask and they'll tell you about it.  They're tired of being called "missing" and a burden in Autism Speaks' ads.  Imagine what it would be like to read similar language about yourself; I think you'd feel the same way.  And they are tired of being ignored or insulted when they complain about it.  They've earned their anger, and it's important for Autism Speaks to understand how they feel.

However, there is more to the message.  We're not just saying "stop giving money to Autism Speaks."  We're also saying, "give money to organizations that treat autistic people respectfully and actually spend the majority of their money on services or research."  We're also saying, "Autism Speaks, it's time to change your messages to the world, and get some autistic leadership."

EDIT: We've taken this concern to heart and have started a #posAutive social media push, which is happening today.  Messages are focusing on alternative organizations to support, and on informing people about the positive and just plain ordinary aspects of life with autism.

Q: Autism Speaks has a lot of resources that it can use to help the autism community.  Isn't it harmful to abandon them in favor of less powerful, established, and well-financed organizations?
A: This argument sounds reasonable at first, because it seems sensible that consolidating all our money in one place should be more efficient than distributing it among many local organizations.  But if you really look at it closely, the argument simply states that "Autism Speaks is too big to fail."  And that's not a good argument.  Joel lays out why nicely here.


Q: Who will promulgate autism awareness when Autism Speaks is gone?  And isn't their rhetoric the best way to raise autism awareness?
A:  Unfortunately, Autism Speaks is in no danger of going away any time soon.

Yes, making people afraid, and portraying helpless children as the victims of some calamity, are great ways to get attention and raise money.  Some have described their tactics as having great "shock value."  If Autism Speaks were to stop fearmongering--or be replaced by another organization that used a different approach--they might raise less money.  However, I think the harm this rhetoric does, by spreading misinformation, panicking parents, and demonizing autistic people, far outweighs the benefits of the extra money and attention.

Please understand that misleading autism awareness--widely spread misinformation--is more harmful than none at all.  By this point, people know that autism exists and is being identified at increasingly high rates.  Yet autistic people, and family members like myself, are constantly debunking myths and stereotypes about autistic people. No, vaccines don't cause autism.  Yes, autistic people care about other people's feelings.  No, autistic people aren't all intellectually disabled--or all geniuses.  Yes, autistic people's lives are worth living, and their parents can live happily.  I can't speak for autistic people, but I know many autism family members spend a large portion of our time informally educating people about autism.  Without Autism Speaks, we'd continue to do so.  And without Autism Speaks, there would be air-space for other organizations to fill the gap and help us spread, not just awareness, but acceptance.


Q: Why should I believe Autism Speaks is saying hateful things about autistic people? They have never said anything hateful about me or my child.
If Autism Speaks has never hurt you or your autistic loved one(s), I'm sincerely happy for you.  However, that's not an adequate answer to our complaints.

Here's why.

Autism Speaks does not just claim to represent you, or people who have the same experience as you.  Autism Speaks claims to represent the entire autism community to donors, the media, and the U.S. government.  They also make claims about what "autism" is in their "Call to Action" and other media.  Therefore, they are claiming to represent everyone in the autism community--parents and autistic people alike, speaking and non-speaking, those who live independently and those who may never be able to.

So when many of us say that Autism Speaks' message does not represent what autism means to us, it matters.  If Autism Speaks wants to claim to represent us, it needs to address this discrepancy.

So, if Autism Speaks represents your perspective personally, that's nice, but it isn't relevant.

(I also personally believe that Autism Speaks' language is likely to hurt the children of such parents, even if it doesn't bother the parents.  I see myself as advocating for their loved ones as well as my own, and I think many of us feel the same way.  But I'm not their parent, and the decision of what autism organization to support is ultimately the parents').

Q: Are you engaging in public shaming? 
A:  I'm not entirely sure what other boycotters would say, so I'm only going to speak for myself here.  Others should feel welcome to comment.

Personally: I am publicly shaming Autism Speaks itself.  I am not trying to shame any corporations, celebrities, or others who support them.

Because Autism Speaks has positioned itself as the leading autism charity (despite offering no direct services), people unfamiliar with autism will assume that since it has "autism" in the name, it must actually be helping autistic people.  Sponsors who know little about the harmful aspects of Autism Speaks (probably most) have no reason to feel ashamed--unless they have deliberately refused to listen to information about it.

Other organizations, such as those led by Autism Speaks board members, are acting on good intentions, doing what they believe will help the autistic people in their lives.  I have less hope of convincing these sponsors to change their own minds, but I'd like them to at least understand what we are doing.  I think what these sponsors are doing is deeply harmful, but I'm not trying to shame them.  I'm trying to pressure them to change their behavior.

I've written separate messages for each of these audiences because I think it's important to address the very different perspectives of those who don't know and those who disagree.

Q: Why aren't you engaging with Autism Speaks?
A:  We're trying.  They have yet to respond publicly.

Usually, when you address an organization repeatedly, either directly or in Twitter mentions, they will reply in some way. 

Autism Speaks has yet to post so much as a tweet or facebook message in response to the boycott, let alone an official message.

"Anonymous Aspie" has written an open letter to Autism Speaks, and the link, addressed to @autismspeaks, has been circulating widely through Twitter. The organization has yet to reply.   

Instead, they are making minor changes to their website.  They are featuring stories about autistic adults, such as Susan Boyle's coming out with Aspergers, in order to make it seem as if they value and work with autistic adults.  However, they still have no autistic people in decision-making positions, and the autistic self-advocates they feature were working on similar initiatives before Autism Speaks ever decided to give them money or put them on their site.  They just sent out a press release discussing the grants they have given this year.  These grants are all quite small and total only a small fraction of their operating budget, just as in previous years.  You can see a timeline of their attempts at "damage control" and public relations here.

Autism Speaks has no interest in engaging with the autism community.  Rather, they are using public relations to make it appear as if they are addressing our complaints without changing the substance of what they are doing. Were they truly concerned about autistic people, or about whether they were adequately representing the autistic community, they would make some attempt to engage.

Have any other questions or arguments not addressed here?  Please comment; I'll try to answer.