“Sorry, We Already Gave to Autism Speaks,” or The Role of Money in Institutional Ableism7 min read

A few years ago, I quit my job as a non-profit devel­op­ment and com­mu­ni­ca­tions pro­fes­sional to become a full-time mom and autistic activist. When I first met the team of The Aspergian, I was so excited to fundraise. I admit, I went in a bit cocky.

My thought process was, “I made a living run­ning social media cam­paigns, drafting appeals, and plan­ning events. I worked on suc­cessful grants. Surely, I can put my skills to use to raise funds for #actuallyautistic-lead causes as noble as The Aspergian and NeuroGuides. Piece of cake!”

Guys, I haven’t raised a single dollar. Not one.

Of course, I ques­tioned my own abil­i­ties first. Maybe I am the problem? But I listed my prior expe­ri­ence to explain why, once I calmed down, I wanted to look fur­ther. I have raised money before, after all. I started talking to mem­bers of the dis­ability com­mu­nity and heard things that star­tled me. Activists were strug­gling to get people to turn out for events and meet­ings. They were strug­gling with their bud­gets.

I was per­plexed. The activists I was speaking with came from a respected national dis­ability advo­cacy group ADAPT, whose work is respected and rec­og­nized. What was going on here???

It hit me like a ton of bricks: maybe dis­ability activists and I are not the problem; maybe ableism is! Do non-disabled people prefer to donate to dis­ability orga­ni­za­tions lead and run by non-disabled people? Could THIS be why I was strug­gling to raise money for the best autistic orga­ni­za­tion I have ever been a part of?

I, like many autistic people, like to test my the­o­ries with empir­ical evi­dence. So I set out to com­pare bud­gets between the largest autism orga­ni­za­tion ran by neu­rotyp­ical people and the biggest pow­er­house that I could find ran by #actu­allyautistic people:

Autism Speaks and the Autistic Self Advocacy Network (ASAN)

Autism Speaks is the most pro­lific autism-centered orga­ni­za­tion in the United States of America, bom­barding society with national adver­tising cam­paigns and hun­dreds of local walks and fundraisers; on the other hand, ASAN is the most well-know, regularly-recommended orga­ni­za­tion for autistic self-advocacy. It’s co-founder, Ari Né’emen, was chosen by President Barack Obama to sit on the National Council on Disability and now works with the ACLU. I fig­ured that if any group of autistic self-advocates would be able to raise money, ASAN was it.

Autism Speaks

Autism Speaks was founded in 2005, and ASAN began in 2006, so the groups have had a sim­ilar amount of time to grow. They are also the two orga­ni­za­tions most fre­quently quoted in the media around issues involving autism. I chose the year 2017 for my com­par­ison because it was the most recent year that annual reports were avail­able for both orga­ni­za­tions.

Spoiler Alert: the results were even more shocking than I had antic­i­pated.

In 2017, Autism Speaks raised 96.8 mil­lion dol­lars. I know what you are thinking, “A lot of that money is service-based.” I will dispel that myth right now. Autism Speaks does not have a lot of money because it pro­vides goods and per­forms ser­vices. It has a lot of money because people GIVE IT a lot of money and other types of dona­tions every day.

“Donated goods and in-kind ser­vices” make up $43.1 mil­lion of the $96.8 mil­lion total. Donations through the “Walk Program and retail part­ners” make up $28.4 mil­lion. “Major Gifts, grants, and other con­tri­bu­tions” make up $17.9 mil­lion, and the final $7.4 mil­lion is made from events. Basically, if Autism Speaks never again received another grant or pro­vided another direct ser­vice, don’t kid your­self: it’s doors would remain wide open.

ASAN

ASAN, on the other hand, raised $506,902 in 2017. Please note, this is not in mil­lions. Rounding to the nearest dollar, they raised $182,485 in con­tri­bu­tions, $157,140 in grants and con­tracts, and $5,069 in mem­ber­ship dues. They gar­nered $55,759 from pro­gram events and earned $50,690 in a fee for ser­vice capacity. They gained $45,621 by putting on spe­cial events and earned the remaining $10,138 selling books and other ASAN mer­chan­dise.

So you get the pic­ture. To sum this up in one par­a­lyzing sta­tistic, Autism Speaks has 190x the budget of ASAN, our most pro­lific non-profit run by autistic people. 190 TIMES.

BUDGET COMPARISON
Perspective, for the visual thinkers

I can hear the com­plaints about my analysis now. “What if ASAN just isn’t any good at fundraising? Autism Speaks is PHENOMENAL at it!” I will say this: it is easy to be “phe­nom­enal” at fundraising and branding when your fundraising budget is 9 mil­lion dol­lars, which is what Autism Speaks spent in 2017. I would actu­ally argue that ASAN are BETTER fundraisers, since their budget for 2017 was $27,314. Autism Speaks spent 329x the amount on fundraising that ASAN had and are only 190x bigger. ASAN is doing some­thing right!

advertising-budget
It’s like playing Monopoly with the person who started with a handful of hotels…

The Reality

In the world of non-profit fundraising, money begets money. More dona­tions will allow an increase in fundraising budget. More fundraising will result in more money for the non-profit. Each year, the gap widens more and more.

Whatever the argu­ment is for Autism Speaks, or against ASAN, my retort is going to be the same– I’d bet ASAN would love to pro­vide direct ser­vices to autistic people that would be far more effec­tive than what is offered by Autism Speaks. I bet they would love to hire sci­en­tists and con­duct their own research. But that is quite hard with a budget of only half a mil­lion dol­lars.

In fact, Autism Speaks has exec­u­tives who make more money per year than the entire oper­ating budget of ASAN.  A large por­tion of Autism Speaks dona­tions– far more than what goes into actu­ally helping autistic people– go to the salaries of rich, non-autistic people who are already mil­lion­aires.  That’s what all those fundraisers are paying to do…

Can the argu­ment be made that Autism Speaks works harder?  Smarter?  That they deserve those salaries?

NeuroGuides

NeuroGuides pro­vides engaging one-on-one sup­port and ser­vices and is on the ground working with autistic people right now. This ground­breaking non-profit, the 501©3 partner of The Aspergian, works directly with autistic people and changes the most lives with the least resources when com­pared to any other sup­port model out there. But unfor­tu­nately, even ASAN’s $507k is a pipe dream for the NeuroGuides. 

Last year, with hun­dreds of autistic people helped in the most diverse and cre­ative ways, the oper­ating cost — budget = -$10,000.

It cost the CEO, who worked more than 80 hours per week, ten thou­sand dol­lars to serve autistic people.  He had to pay to work 80+ hours per week.  The founder of The Aspergian works 80–120 hours per week and has to pay to do it. 

NeuroGuides CEO cre­ated a rev­o­lu­tionary pro­gram and is seeking funds to train more staff and replace the NeuroMobile– the 300k-mile vehicle that is aging out of ser­vice– to keep up with demand for clients.  The wait list is growing, expo­nen­tially, filling with people who were turned down by Autism Speaks.

So what am I trying to say with all of this analysis?? I am def­i­nitely not trying to put down or diminish the won­derful work that non-profits like ASAN and LGFA are doing. I am in awe of the mir­a­cles, large and small, that they per­form every day.

I am trying to help our neu­rotyp­ical allies under­stand that the only way to sup­port the advance­ment of autistic people is to sup­port the work being done by autistic people. If you want to build more oppor­tu­ni­ties, employ­ment, ser­vices, and coaching to ben­efit your autistic child, it is autistic people who need to do the building. We not only better under­stand what sup­ports people like our­selves need, but we are willing to teach them, employ them, and take a chance on them.

Where do you think Autism Speaks will be when your autistic friend, lover, child, or sib­ling can’t find work? NeuroGuides would love to employ them if only they had the resources. The Aspergian wants to help them to write and find their voices. ASAN wants to fight for their right to equal pay.

If you are truly an autistic ally, let your money do the talking. Consider sup­porting orga­ni­za­tions with autistic boards. Not one or two token autistic people on the board, but boards that are pri­marily autistic in com­po­si­tion. Remember: the board sets the organization’s agenda, and an autistic board will set less ableist poli­cies and hire more autistic staff mem­bers.

Think about what today’s fledging autistic non-profits could do and become in five years with a little love and a little money from tens of thou­sands of people. Autistic chil­dren grow into autistic adults. Fund our dreams now and ben­efit the child you love down the road.

If nothing else, please ask autistic people which char­i­ties they prefer before making a dona­tion in their honor. We will tell you who rep­re­sents us, even if we are non-verbal and need tech­nology to assist us. Thank you in advance for your sup­port of us as an autistic com­mu­nity, rather than people who claim to sup­port us.

 

6 Comments

  1. My salary (which I only see a tiny trickle of) is $48,000 a year, as approved by my board. My orga­ni­za­tional board of autistic per­sons. You see, I’m not envious of the mas­sive salaries of the exec­u­tives of giant “autism orga­ni­za­tions”, I’m envious of the power of what could be done for my autistic fellow human per­sons if I had resources like those orga­ni­za­tions do. ~ jdh | ful­crum

    1. Author

      Exactly, which was my whole point. I actu­ally lose money on my advo­cacy work, and I wanted to make public the very real struggle of sup­porting the work we do.

  2. Just imagine if Autism Speaks used half of their adver­tising budget, 4.5 mil­lion to pro­vide ser­vices for autistic people?! It’s a shame they don’t do more to pro­vide ser­vices.

    1. Author

      They don’t because they don’t care. I am sorry, but it’s true. They just don’t care. Their focus is to raise scary aware­ness, do genetic research, and occa­sion­ally offer a ser­vice to “fix” chil­dren.

      1. That’s unfor­tu­nate. 🙁 I got diag­nosed with Autism last year. And only recently been con­nected to the autistic com­mu­nity. The more I hear other autistic people speak about Autism Speaks the more dis­heart­ened I become. I had no idea it was a hor­rible orga­ni­za­tion.

  3. Excellent, impor­tant article. You rightly high­light that in the public mind, they’ve “already given to autism.” Most people won’t deeply research the char­i­ties they donate to, and most neu­rotyp­ical people sure as hell won’t grasp the dif­fer­ence between what autistic-led orgs can do and orgs based on fear-mongering will do.

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