Recently I became aware through Sullivan's post at LBRB that Autism Speaks was sponsoring the National Autism Association's national conference and that Andrew Wakefield was speaking at this conference, along with a long list of proponents of less-than-scientifically-backed treatments.
Given my strong commitment to evidence-based practices when it comes to treating any child with any kind of disorder, the list of speakers at the NAC is, at the very least, disappointing. It's also a mixed bag of presenters, similar to the ASA's list of speakers at their national conference each year. At least neither of these conferences is as bad as AutismOne, which, however was not confined to only woo speakers this past year. In other words, none of these conferences are perfect, but are instead open to speakers who want to come. Now, a great conference, by all accounts, appears to be the one done at Penn State. All conferences, though, at least relating to autism, near as I can tell, have at their heart making money.
Unfortunately, autism has become big business and not all of that business (or even much of it) is evidence or science-based. You can't even rely on universities to ground you in good science (or good practices). Just look to Biklen's Inclusion Institute or Rutger's FC-filled autism certification program if you doubt that.
At any rate, the decision of Autism Speaks to spend $10,000 to be bronze sponsors of what I consider to be a problematic conference, was, to put it mildly, troublesome, especially given my denouncement of the neurodiversity movement (as represented by Ari Ne'eman) for its support of facilitated communication and its acceptance of Biklen and the University of Syracuse's financial support to bring off the recent Neurodiversity Symposium. Indeed, I made some folks mad over that denouncement, which they used as an opportunity to lash out against my decision to support AS. I explained my decision-making process in subsequent postings, not something that I necessarily think anyone should have to do, but one I felt I needed to.
Imagine my dismay at this news, then, that Autism Speaks was sponsoring the NAC and the ethical dilemma I felt (and feel) I face. Is this the same issue as the FC one? Worse? No big deal? How to make this decision without falling into the traps of sunk-cost fallacy and self-justification? This is something I've struggled with since I read Sullivan's post and probably bored my family and closest friends silly with. I do tend to perseverate, you know.
This isn't just about my time and investment in AS; there's the fact that my children, my husband, and my father are heavily invested in volunteering for Autism Speaks. Not only do I sit on the walk committee and create special events (like the Beat the Back-to-School Jitters event), I run my college's team, and I'm the faculty advisor on the newly created Autism Speaks U college chapter. I'm as deep as you can get at the local level and I consider the people who work for AS, all the way to the very top, to be some of the finest people I've ever known. They are also, obviously, a very diverse group of people with differing beliefs regarding some of the issues in the autism world. While this shouldn't have surprised me, it did, and reminded me that when we're focused on common goals some of those areas of disagreement don't come up.
So there's a whole lot of incentive, in terms of the time and emotional investment, to not say a word publicly about this, to let this go unmentioned. But the fact is that the National Autism Association, along with AutismOne, continue to give Andrew Wakefield a platform to speak, and despite everything that's out about him, people continue to support him, admire him and believe that he's helped bring attention to the serious nature of some autistic children's GI issues. Some of these people are involved in Autism Speaks.
How is this different from the neurodiversity/facilitated communication issue? How can I denounce the one and not the other? I think there are differences.
FC people (Woo) paid for the neurodiversity symposium. Autism Speaks is sponsoring the convention where woo will be discussed. It's still woo, though, in both situations and it looks like explicit support in ASAN's case and tacit support in AS's. In other words, there may be differences, but they may not be that big of differences.
Let's see, what other differences? Ummm, there's the inarguable matter that Andrew Wakefield's debunked, retracted study and his subsequent work condemning vaccines has harmed far more people worldwide than facilitated communication.
I denounce FC; I denounce Andrew Wakefield. So far, so good. I say I can't support a movement that incorporates FC as an integral part of its foundation. I'd say the same about Wakefield and any organization that incorporates him as an integral part of its foundation.
Okay. So. You see my dilemmas? I have to decide whether a sponsorship of a conference where Wakefield is speaking is tantamount to endorsing, supporting, and promoting Wakefield.
I don't support the Autism Society of America because they promote facilitated communication. They don't get my money. I don't support the National Autism Association because they are heavy into the vaccine-autism belief system and support woo. They don't get my money either. However, where and when those organizations support situations and issues with which I agree, I try to reach across and work with them. Take the wandering issue (yet another stance that really annoyed some folks).
I do support Autism Speaks and its evolving mission. I think that it has tremendous influence and power and can do a lot of good, and that by working within it, I can do a lot of good at the local level. I also hope that by working with the organization that my voice, my son's voice, will matter: when we express a problem, we'll be heard. Being heard doesn't mean being able to make immediate change, nor should we expect it to.
Let me offer an example: the Autism Blogs Directory is inclusive. Anybody emails and asks to be put on, we put them on. They don't have to pass a litmus test. I don't have to like them or agree with them. They just have to ask. Even people who are decidedly not my personal friends by any means are on the directory. Even people who disagree with me are there. They aren't going anywhere unless they ask to be removed. I believe strongly in inclusion even when it personally costs me because those individuals are ideologically opposite.
Inclusion. Reaching out. Building community. Trying to represent all. Everyone with a spot at the table. Noble ideas, yes, but also, at times, offering the appearance of trying to straddle the fence. It can be an absolutely uncomfortable position to be in. No matter what you do, someone is going to be unhappy about it. In this instance, perhaps those who support the NAA (and Wakefield) were overjoyed, while those who support science-based interventions were/are more than a bit out of sorts.
It should be noted that Autism Speaks openly and transparently paid $10,000 to be bronze sponsors:
"BRONZE SPONSORSHIP: $10,000 SOLD
Sponsor Option 1: Includes PREMIER sponsorship of the All Day Beverages provided complimentary to all conference attendees SOLD
Sponsor Option 2: Includes PREMIER sponsorship of Afternoon Snacks provided complimentary to all conference attendees SOLD
Also, enjoy the following benefits as a Bronze Sponsor:
Complimentary half-page ad in the official conference program
Complimentary 160 x 100 pixel banner placed on the right side bar of each page on the National Autism Conference web site.
Company Name and/or Logo placement on conference t-shirts
Place approved literature insert (one-sheet) inside the conference bags
$1,000 discount on exhibit booth
Two complimentary VIP tickets to the Saturday Night Dinner Event"
They didn't hide it. They're doing it for a reason: they're trying to bring more people into the fold. Maybe people at this convention who've never given Autism Speaks a second glance will do so and will get locally active with AS.
I emailed Autism Speaks the day that Sullivan put his piece up. I had a response the next day, and today, having asked on Friday for a formal announcement attached to an AS spokesperson, I received the following official position from AS on sponsorships from Dana Marnane, Vice President, Awareness and Events:
The mission of Autism Speaks is to support the lives of all families touched by autism. Since our inception, we have supported a range of autism organizations’ conferences and events representing the diversity of beliefs and opinions in the autism community. Autism Speaks does not develop or endorse the content of these outside events.
A critic at LBRB suggested that sponsoring is tantamount to endorsing. Maybe it's semantics. Maybe it's self-justification, but I know that for me, when I include a facilitated communication blogger on the directory or one who buys into Amy Yasko's woo, I'm not endorsing them. I'm including them at the table and saying they've got a place there. It isn't a personal endorsement.
I disagree strongly with Andrew Wakefield being able to speak at any autism conference. I wish that there was no connection, no matter how many degrees of separation, between Autism Speaks and Andrew Wakefield. But unless they put him on their board and all of a sudden remove or rename their science pillar the woo pillar, I'm going to continue to support Autism Speaks and the fact that the people who run it really do want to include everyone while not demanding ideological compliance in order to be a part of the group. As long as the organization continues to grow, to learn, to change, to bring more people, especially people on the spectrum, to their table, I will walk for them and volunteer for them. I will walk and teach my children that their voices matter and will be listened to, but that in order to be heard, they have to come to the table. And if you've heard my children? You know they've got loud voices. They will be heard. :)
Maybe that's self-justification. Maybe not. If it is, how would I really know?