Autism Advocacy: Developing New Markets

23 May

Autism Speaks is hiring. You can find their job posts on the Web. Nothing surprising about that. Here is a segment from a recent job post:

Autism Speaks is the world’s largest autism science and advocacy organization, dedicated to funding global biomedical research into the causes, prevention, treatment and cure for autism. We currently have a rewarding (new) career opportunity available for an experienced Area Director – South Florida (Miami, Palm Beach, Broward) to join our growing organization.

The selected individual will be responsible for driving revenue through walks and events, strengthening existing markets and identifying and developing new markets. Must be experienced in staff management and volunteer leadership development. This position reports to the Executive Director – South Florida Chapter, which is based in Miami, FL.

Let me highlight the phrase that caught my eye: “…strengthening existing markets and identifying and developing new markets”.

Before people start talking about “big Autism” and all, that’s not really my point. More my own naivety. We’d like to think of Autism Speaks’ walk-a-thons and other fundraising as being organized by the communities. But this is a $50M a year charity. That’s just not going to happen with an all volunteer organization.

Are you happy with what the $50M/year organization does? That is another question.

20 Responses to “Autism Advocacy: Developing New Markets”

  1. KWombles May 23, 2012 at 13:51 #

    Actually, it’s closer to $70 million than to $50 million a year unless 2011’s fundraising was less than 2010’s (I haven’t looked to see, but I know we were down locally in our fundraising efforts). And make no mistake, it is a business that is constantly seeking to increase its intake–expecting 10% growth annually in each of its walk markets.

    Their argument is that they can’t do the research without the money–they can’t add to their services without the money. But, never fear, it’s not really about the money–it’s about what the money can do.

    And that’s all well and good if the money is going where it’s needed most. I think many people would agree that funding needs to be towards activities, job training, assisted living situations, and research that looks at improving skill sets and increasing the chance of independence, not for research looking at a cure–it’s irresponsible not to work to help people now who need it.

    Their expectation is for year round fundraising, as well. It’s becoming an increasingly hungrier machine and sometimes that means heavy pressure on and a lack of appreciation for their volunteers.

    As several of our online friends and allies have noted in their experiences with AS, people skills are often sorely lacking in their paid staff, as well. Many situations that have been reported have been badly handled.

    I would hope that the organization’s leaders would be a little more alert to these things and quicker to fix these issues.

  2. Science Mom May 23, 2012 at 14:53 #

    What is their non-administrative proportion of each dollar? And yes, referring to autism issues and people as a “market” is pretty skeevy.

  3. KWombles May 23, 2012 at 15:24 #

    Financial Performance Metrics
    Program Expenses 72.5%
    Administrative Expenses 4.5%
    Fundraising Expenses 22.9%
    Fundraising Efficiency $0.22
    Primary Revenue Growth 4.5%
    Program Expenses Growth -0.1%
    Working Capital Ratio (years) 0.25

    Apparently, their banner year was 2008 (which is what I was remembering–68 million). 2009 saw it drop to 45 mil, and 2010 went back up to 50 mil. It will be interesting to see what happened for 2011.

    Salaries in 2010 equaled grants given out: around 16 mil and some change.

  4. Turok May 23, 2012 at 16:23 #

    What is that comment above about? Is this some sort of PR person that’s doing apologetics above? Actually, forget that question. it is one.

  5. Turok May 23, 2012 at 16:24 #

    Autism Speaks: silencing autistics.

    Helping us by trying to wipe us out. How cynical.

  6. KWombles May 23, 2012 at 16:40 #

    No, why don’t you read it again? My second comment was in response to Science Mom.

    How do you get that when I wrote they paid as much in salaries as they gave out and view that as someone who works for them in PR–that’s not good PR. wow.

  7. Science Mom May 23, 2012 at 17:15 #

    Thanks for the info Kim. Colour me unimpressed with AS yet again.

  8. Saraquill May 23, 2012 at 20:06 #

    I still don’t trust them, and the phrasing in that job post gives me little reason to think well of them.

  9. Roger Kulp May 23, 2012 at 21:09 #

    I don’t think it’s an issue of funding research into genetic causes and medical issues in autism VS funding job training,independent living,and other programs for autistics.I think both are just as important.Autism Speaks takes in so much money,that they could easily do both.The problem is the big salaries,benefit packages,and perks that administrative,and managerial people in AS give themselves,at the expense of both research,and providing services.THAT is the big issue people on all sides of the autism issue ought to rally around,and keep hounding them about.

    Has anyone asked the Executive Director,of the South Florida Chapter,just what they mean by “developing new markets”.The response might be very interesting,and may reflect what I see as the main purpose of Autism Speaks.Improving the lifestyles,and bank accounts of their one “one percent”.

  10. KWombles May 23, 2012 at 21:17 #

    Roger, I can tell you what they mean by developing new markets: cities in which to hold new walks to bring in new revenue.

  11. stanley seigler May 24, 2012 at 08:16 #

    @Sullivan: “…this is a $50M a year charity…Are you happy with what the $50M/year organization does?”

    very few are happy except those whose get their egos massaged by getting a pat on the head from the advocate 1%…

    amazing that money can buy agendas…well maybe not amazing…USA GOPs have done quite well in the political arena.

    kinda get why the 99% vote with the 1%…ie, vote against their self interest…didn’t realize it applied to the DD/autism community, as well.

    begining to understand the finical success of AS…and why advocates support AS’ misplaced priorities…

    @KWombles it’s irresponsible not to work to help people now who need it.

    most irresponsible, sad it is supported by advocates who prefer a pat on the head vice quality support programs for their/our children/friends…

    re: “a lack of appreciation for their volunteers.”

    sadly the volunteers believe they are appreciate vice used…amazing what a patronizing pat on the head can do…

    perhaps comments too cynical…but there are so many (not cured) who need quality support…

  12. Kassiane May 24, 2012 at 15:54 #

    Awwww, they don’t need another person for social media crisis management? I guess we need to work harder.

    “New markets”? Really? I am not sure I understand what that means. Do they mean “new places that give us money to use in not-their-community” or do they mean “different kinds of people who give us money to use in not-their-community”?


  13. Turok May 24, 2012 at 16:00 #

    “Roger, I can tell you what they mean by developing new markets: cities in which to hold new walks to bring in new revenue.”

    This isn’t even trying to hide the money-spinning or ghastly intentions.

  14. Tom May 24, 2012 at 17:36 #

    AS is a non-profit research foundation and they are no different in their approach to fundraising than any other organization. The talk of market growth is a reality and really pretty mundane. No successful charity can depend on volunteers to organize large events, secure underwriting, operate direct mail, organize dinners, and solicit major gifts, wills, and bequests. It’s the way charities do business. And they are a business.

    As to their efficiency 72% for program is pretty good. I worked for a foundation that was at 80% but we lived mostly off major gifts and that’s just more efficient than events and walks.

    • Sullivan May 24, 2012 at 19:04 #

      As I noted in the article, I put this more into the category of my own naivety. The language of “Developing new markets” struck me odd, but that’s just because I hadn’t really thought it through.

      An analogy I see is that if one needs a special ed or disability rights attorney, sure it would be nice if the person were connected to the community somehow (most seem to be). But, in the end, it is the results that count. At the size of Autism Speaks, they are going to be focused on markets and PR and fundraising.

      It’s what they do that counts. And some things they do are good. For example, I recently found that Autism Speaks had funded some project at PACE University. The question that came up in my mind was whether they had funded the PACE/NYU “study” that came out last year. Instead I found that they are supporting this

      The goal of the BOSS Program is to provide a postsecondary program for young adults on the autism spectrum with high functioning autism, Aspergers syndrome, nonverbal learning disabilities, PDD-NOS and related learning differences that will afford them the opportunity to be educated among their peers, and will contribute to improved adult living and employment outcomes. The program functions through a collaborative transdisciplinary system, in which ongoing intensive supports in academic, social and career development are provided in a fully inclusive college setting.

  15. Kassiane May 24, 2012 at 19:43 #

    That sounds like a cool program.

    There’s a college program in Florida I think, but it costs more in a year than many families MAKE in a year. An affordable university/transition to OMG REAL ADULT program would be awesome.

  16. stanley seigler May 26, 2012 at 13:30 #

    @sullivan: “It’s what they do that counts. And some things they do are good.”

    most of what they do is good…cause/cure research is needed…but they should do more good in developing quality support programs for those not cured…

    eg, research the likes of group homes, microboards, JRC…also provide grants to support programs…

    @tom: “AS is a non-profit research foundation and they are no different in their approach to fundraising than any other organization.”

    and they are effective…andand they could be different, ie, research/focus on support programs and cause/cure…

    • Sullivan May 28, 2012 at 15:24 #

      The obvious statement is that while some of what autism speaks does is good, some is not so good. Their marketing message is sometimes damaging, in my opinion. Thankfully the “I am autism” video seems to be gone. But I can’t say I agree with them pounding the “epidemic” drum after the last CDC prevalence report.

  17. stanley seigler May 27, 2012 at 05:17 #


    re: and they are effective

    AS’ most effective fund raising allows them to be different…they have finical ability to research, focus, fund, develop: both quality of life support programs and cause/cure scientists…


  1. Autism Blog – Autism Advocacy: Developing New Markets « Left … | My Autism Site | All About Autism - May 23, 2012

    […] Original post: Autism Blog – Autism Advocacy: Developing New Markets « Left … […]

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