Deanne Shoyer lists several reasons why she doesn’t support Autism Speaks, one of them being the need to move from Autism Awareness to Autism Acceptance.
–
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.*
*Updated: In November 2013, John Elder Robison publicly resigned all his posts at Autism Speaks. You can read his resignation letter here. In his letter he stated:
Autism Speaks says it’s the advocacy group for people with autism and their families. It’s not, despite having had many chances to become that voice. Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.
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’?
Autism Speaks 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.
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.
Originally appeared at Small but Kinda Mighty
Photo: MeddyGarnet/Flickr
Thanks for your thoughts on this matter. There’s just this I’d add to what you say, with respect to this passage you wrote about me: [John Elder Robison] self-identifies as aspergian rather than autistic. Asperger’s is a descriptor for a condition on the autism spectrum. All persons who are diagnosed as Asperger are, by definition, autistic. This diagnostic reality was established in in both ICD and the current version of DSM. It’s confusing to suggest that you can be one and not the other. The second point I’d raise relates to the “self-identifies” words. In most contexts, self-identifies would refer… Read more »
I don’t know this lady who wrote this, but this is a poorly thought out argument. How does one make the stretch from prevention to eugenics? No where in the material she provided attacking AS can one reasonably make the jump to what is involved with eugenic practices. Her use of the word in t his circumstance begs the question, does she even know the definition and history of eugenic practices in this country, and the rest of the world. If this lady’s lead beef is a flawed and over reaching hyperbole, she is going to lose a lot of… Read more »
Dear Mr Stanik,
Your comment is confusing. What do you believe eugenics to mean, if not the prevention of the birth of ‘unfit’ children? American eugenics have generally not been considered very sinister in the popular imagination during any of the times in which they were practiced, including now. If they were, people would not put up with it. Instead, such practices are presented as ‘helpful.’ It is unclear whether your confusion is with the meaning or etymological features of the word, or if it is with American history.
Best, E.J. Grace
Mike Stanik – perhaps take a look at this and reconsider. http://lightituptrue.wordpress.com/2014/04/03/autism-speaks-awareness-campaigns-harm-autistic-people/ Admittedly it is something else I wrote but I can assure you that I am certainly by no means alone in feeling that AS’ message is eugenicist. In my view it’s even clearer when you juxtapose messages from Eugenics Societies of the early 20th century against AS rhetoric and see that they use the same talking points. For those who wonder what the connection is between preventing a neurotype and eugenics I have to pose the question, given that autistics are born autistic, how does one prevent autism… Read more »
Real simple. BRAVO, DEANNE!! ‘Nuff said.
I am autistic, but I often feel annoyed with the “It’s not a disease!!” position Deanne Shoyer obviously takes. I do, as a matter of fact, SUFFER because of my autism. It’s a condition known for impairing one’s ability to understand non-verbal communication, social cues, unwritten rules, to empathize, thus to connect with people. Autistics are inevitably bullied for missing out on unwritten rules, rejected for failing the read between the lines in everyday conversations. In many cases they can’t even connect with their parents who love them unconditionally, what hope do they have of making friends. The analogy is… Read more »
Quantuminc, I completely accept that autism is a developmental disability. One of my sons is non-speaking and both of them are intensely autistic and in need of one-on-one support. But I also view disability as something that’s part of the human experience. Disabled people need accommodations, services and supports (that Autism Speaks isn’t providing by the way), they don’t need to be eliminated or prevented. Disabled people have value and are perfectly able to live happy, fulfilling lives and to contribute unique perspectives. Does Stephen Hawking have no value because he can no longer speak? I hope you read (if… Read more »
Pretty powerful and I agree.
You say their anti-autistic because none of their board members are autistic. You then go on to say that you support The Geneva Centre for Autism- an organization which has no autistic people on its board. In fact, at least five of its board members aren’t even related to an autistic person.
Guess its time to find a new charity…
Hey Raised Eyebrows, too empirical. Look at Autism Squeaks mission and vision and look at Geneva Centre for Autism’s Mission and Vision , and you decide. Autism Squeaks is anti-autistic. They want to cure us. I feel sorry for the Wright’s grandchild.
Raised Eyebrow – it’s a fair point, although Temple Grandin is on GCA’s advisory council. I don’t know all the board members so I can’t confirm if any of them are in fact autistic. The main reason I support GCA is because they do a lot of work in supporting autistic teens and adults, a population who are extremely under-represented in terms of services and supports.
I do not support the Geneva Convention for Autism research because ightly My son who has Autism went in person for help with his life. The did a quick analyses; determined he was a highly functional Asperger with ADD; and told him he did not meet the requirements of their rules for providing services to him. The same criteria is followed by DSO; which uses diagnostic tests for cognitive skills; but none for psychosis. Psychosis is the main determining factor for what a person needs for services. Be it meds; psychiatric therapy and ongoing followups. Both the Geneva Center for… Read more »
A minor quibble: John Elder Robison resigned from AS earlier this year because of their inability to listen to people with autism or their families (among other things).
Thank you! Yes, I wrote this piece a year ago. I have updated it to reference JER’s resignation in November, 2013 and I believe the editors are going to update the post here also.