Tuesday, April 2, 2013

Why I don’t support Autism Speaks (which is why I don’t ‘light it up blue’) -A guest Blog by Deanne Shoyer

April 2nd is World Autism Day and I thought having a well respected and recognized mother of 2 Autistic boys would be the perfect guest blogger with a message I feel passionate about. AND she just happens to be a friend. Thank you Deanne Shoyer - Author of Small But Kinda Mighty  and Circle Of Moms Top Tech Blogger.

 I've found myself explaining to a number of people recently why I don't support Autism Speaks, so I figured maybe it was just easier to write a blog post about it so all my reasons would be in one place that I could then just link to. Blogging inspired by laziness, if you will. This is a tricky topic for me because I have friends who do support Autism Speaks (AS) and have found their local AS chapters in particular to be helpful and supportive. I'm not about to withdraw much-needed love and support from these friends but I continue to make it clear why I disagree with their choice in this regard. So much so that the fact we're still friends is a testament to their inexhaustible patience when it comes to putting up with me. There are also a lot of people out there who support AS because when they google for information about autism, it's the first site that comes up. This is another reason why I feel the need to speak out and explain publicly why I can't support this charity. In fact, I encourage everyone to do their due diligence when it comes to supporting any organization, whether that support is either moral or financial. So, here's the list of reasons why I don't support AS:

They support eugenics

Yep, I used the 'e' word but I'm actually not doing it to be inflammatory. I'm not suggesting that AS is full of Nazis or anything else that is completely untrue so calm down already. Eugenics doesn't have to be seen as wholly negative in nature - one can argue that any research focused on trying to eliminate genetically inherited conditions (like Huntingtons or cystic fibrosis) is eugenics. That's why there's always so much ethical controversy over this type of research because:
  • it could lead to unforeseen outcomes.
  • Unless a birth defect is uniformly lethal prior to or at birth then who gets to decide whether that trait or condition is considered 'undesirable'?
Whether its intentions are positive or not, I'm not a fan of a eugenic approach. Genetic therapies, genetic testing - I don't in general have a problem with those, but trying to direct the course of human evolution - that leaves me queasy. How can I say that AS is a eugenic organization? Well it's right on their website:
"Autism Speaks has grown into the world's leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism."
It's also right there in Part II of their Form 990 (U.S. tax return filings). They want to eliminate autism. I'm not going to support anyone who wishes my sons could have been prevented.

They are anti-autistic

Not one of their board members is autistic. Not one of their leadership team is autistic. One person, John Elder Robison, is a member of the Autism Speaks Scientific Advisory and Scientific Treatment Board - he self-identifies as aspergian rather than autistic. If there was an organization called "Femininity Speaks", led and staffed by men whose goal was to prevent, treat and cure femaleness, would you be comfortable with that? Take a look at the responses from autistic people to the AS produced video on AAC: Autism Speaks, I want to Say for a wonderful set of critiques about why the messaging from AS is still anti-autistic and very problematic.

They don't spend money in ways that would actually support autistic people and their families

Let's take another look at that Form 990 from 2011 (the latest year available). Total revenue (Part I, line 8): $50, 238, 297. Amount spent on family services (Part III, line 4c): $4,477,702, or 8.9% (round down to 1 decimal place). I think that bears repeating: less than 10% of AS' gross revenue is spent on helping autistic people and their families.

They spend a lot of money on executive and independent contractors' compensation

Form 990 Part Part IX line 5: Compensation for key employees - $3, 154, 665. This isn't total compensation, this is just for the highly paid, top executives. There are 18 people in AS who make in excess of $130,000. Total compensation for all of AS would also include lines 7, 8 and 9 which adds up to $14,620,085. Line 11 includes all the amounts paid to independent contractors including government lobbyists, public relations firms as well as legal, accounting and management firms. The total amount paid out is $2,864,784. Do I have a problem with charities paying their employees a reasonable, competitive wage? Absolutely not. Do I have a problem with an autism charity spending 5 times as much on compensation, public relations, lobbying, etc than on autistic people and their families? Yes, I do. For every dollar you donate to AS, less than a dime goes to autistic people and their families but 41 cents will go towards compensating AS executives, employees and independent contractors.

Why not support 'light it up blue'?

AS started the light it up blue campaign. It's inextricably linked with them so by supporting it you provide them with free publicity, legitimacy and, if you buy a blue lightbulb at Home Depot (the co-founder of Home Depot is on the AS board), then you are financially supporting them as well. For the perspective of some autistic people on this, check out the Tone it Down Taupe campaign. [caption id="attachment_2774" align="aligncenter" width="187"]Tone it Down Taupe ribbon I love someone without autism[/caption]

Are there any 'good' autism charities out there?

Here are the ones that seem to be the least problematic: Autistic Self Advocacy Network The Doug Flutie Jr. Foundation If you're in Toronto, my recommendation would be The Geneva Centre for Autism.

Let's move from awareness to acceptance

No point in me re-writing this, so just go read a couple of excellent round ups from Steve Silberman and Shannon Rosa of why autistic people want you to focus on acceptance of autism, not awareness. I'm with them 100%. Someone recently asked me how I would encapsulate the difference between awareness and acceptance. My best attempt was that awareness stigmatizes difference but acceptance values it. I value my boys, just the way they are. [caption id="attachment_331" align="aligncenter" width="225"]My beautiful boys My beautiful boys[/caption] (X) CLOSE