Justice

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

Why autistic people can't get the help they need, and what it would take to change the trajectory for autistic people.

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 Ne’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(c)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. 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. 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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