The following article was inspired by a correspondence I had with my friend, and fellow Autistic self-advocate, Jason Ross, here, on his website, which I also shared in my post, “Discussing the Organization, ‘Autism Speaks’…“…
The officially-stated mission of Autism Speaks is “to fund research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.” While their mission may sound noble, does this organization truly represent the interests of the Autistic community? Being on the Autistic spectrum, myself, and somewhat interested in the possibility of becoming more actively involved in the Autism Speaks organization, I decided that I would venture to discover the answer to my question by doing some much-needed research. I found a well of information on the internet, beginning with the following controversial Autism Speaks video, released on Sept. of 2009, entitled, “I Am Autism”:
(note: sadly, all traces of this video have since been scrubbed from YouTube)
Update: here is a version of the video that recently popped up on Vimeo:
Click here to download a copy, in case it disappears, again!
(note: sadly, all traces of this video have since been scrubbed from Vimeo)
Update: here is yet another version of the video that recently appeared on YouTube:
This completely tasteless and offensive video seems to perfectly illustrates what Autism Speaks is REALLY all about: IRRATIONAL FEAR-MONGERING FOR PROFIT through promotion of a very disingenuous “disease/cure” paradigm, with no regard for the DAMAGE they cause to the MANY groups that are aimed at the currently pressing issues of garnering AUTISM ACCEPTANCE and facilitating SELF-ADVOCACY.
Here is some feedback about the video from the Autistic community:
Over 60 Disability Organizations Condemn Autism Speaks
Yet, there are other important questions to consider regarding Autism Speaks, such as: how exactly are donor funds distributed by this organization? Also, how successful has Autism Speaks been at meeting their stated goals? These questions can be answered by reading the following articles, which expose the unsavory financial dealings of this so-called non-profit group:
Autism Speaks Controversy:
*Note the fact that the actual tax return for Autism Speaks is the reference.
According to the article:
“The 2008 report has people in an uproar. Autism Speaks made over $66 million and paid nearly $18 million in salaries and benefits, spending 27% of its revenue on compensation (up 10% from the year before). In total, 36 individuals and 13 independent contractors earned more than $100,000. The biggest source of public outrage came not from the president’s salary of over $365,000, but from another key employee. Geri Dawson, Chief Science Officer, earned $644,264 in 2008 from Autism Speaks and an estimated $25,487 from ‘related organizations.'”
Why Autistic People Don’t Like Autism Speaks:
As stated in the article:
“Autism Speaks spent over $1.7 million on fundraiser expenses, and made only $142,693 from that investment (that’s the net gain, or what’s left after that $1.7 million+ is subtracted from the total monies gained from the fundraisers). In total, they spent $17,756,876 on employee salaries, pensions/401ks, benefits, and payroll taxes. By contrast, their grants to individuals and communities totaled a paltry $66,670, not even a drop in the bucket compared to their total reported expenditures. Based on that information, it is clear that Autism Speaks does very little with their money to help Autistic people and their families…”
One look at page 18 of the 2006 Autism Speaks 990 tax report reveals that MANY EXPENSIVE fundraising parties are thrown that ACTUALLY LOSE MONEY:
Further inspection of the tax return reveals even more disturbing information. The last entry of page 10 shows that Autism Speaks paid $57,311 to “Platinum Jets” for use of a private private jet. This was written off as “transporation for entertainers.” A scathing article about mismanagement of money at Autism Speaks can be found in the following location:
I Take Back Every Nice Thing I Have Ever Said About Autism Speaks:
Note certain key facts in the article:
“1. Three members of the Board of Directors received $2.5 million for their own organizations.
2. The President Mark Roithmayr, just received a 5 year contract for about $2,000,000 including bonuses with no prior background with autism…”
The Autistic Self Advocacy Network (ASAN) has gone as far as to create a petition exposing Autism Speaks:
To the Sponsors, Donors and Supporters of Autism Speaks
According to the petition:
“Very little money donated to Autism Speaks goes toward helping Autistic people and families: According to their 2008 annual report, only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services. Given the huge sums of money Autism Speaks raises from local communities as compared to the miniscule sums it gives back, it is not an exaggeration to say that Autism Speaks is a tremendous drain on the ability of communities to fund autism service-provision and education initiatives Furthermore, while the bulk of Autism Speaks’ budget (65%) goes toward genetic and biomedical research, only a small minority of Autism Speaks’ research budget goes towards research oriented around improving services, supports, treatments and educational methodologies, with most funding going towards basic research oriented around causation and genetic research, including the prospect of prenatal testing. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world, with annual salaries as high as $600,000 a year.”
The 2009 Better Business Bureau (BBB) Report for Autism Speaks doesn’t help:
BBB notes the following:
“The organization participated in an affinity credit card program and the promotion does not indicate how much AS receives when a new account is set up and what percentage of each sale is given to AS anytime a purchase is made with the card.”
There is an obvious lack of prudent decision-making on part of Board of Directors at Autism Speaks, and this trend is marked by six-figure salaries for their top executives, lavish donor parties, thrown at a pure loss to the organization, expensive and damaging ad campaigns, large legal expenses, and the list goes on. They have been brazenly mismanage the funds they receive from donors!
Even more interesting is the fact that, to this day, all past and current members of the Board of Directors are neurotypical:
Autism Speaks Should Give Autistics a Voice:
Only a few months ago, did Autism Speaks finally grant its first individual with an Autistic Spectrum diagnosis membership to their Board… their ADVISORY BOARD, that is!
Autism Speaks Appoints Autistic Self-Advocate to Advisory Board:
Autism Speaks also merged with “Cure for Autism Now” a while back, in Feb. of 2007:
This is a red flag to the many individuals on the Autistic spectrum, like myself, who do not seek a “cure,” but rather, understanding and an equal opportunity in NT-oriented society. We make up the core of the Neurodiversity movement, and we reject the notion that we are have a “disease.”
There is still another controversy surrounding Autism Speaks, based on the release of their 2006 film, entitled, “Autism Every Day.” In one clip of the film, Alison Tepper Singer, then-Senior Vice President of Autism Speaks, discusses her homicidal/suicidal desire to drive herself off a bridge, along with her Autistic daughter, and how thoughts of her NT daughter are what prevented her from carrying out her murderous fantasy:
Here is a well-written review of the film:
Autism Every Day – A Late Response
As far as I’m concerned, Autism Speaks does not represent a TRUE, HONEST VOICE for the Autistic community, and the organization has proven that it cannot be entrusted with the task of informing the public about the Autistic Spectrum. For the most part, the organization just dangles the carrot of “curing” Autistics over the heads of confused, anxious and vulnerable parents, keeping them running to donate money, while never CLEARLY ESTABLISHING A REALISTIC MEANS of ACHIEVING THEIR OUTLINED GOAL. In this way, Autism Speaks is able to FUNNEL FUNDS TO just about ANYWHERE they LIKE without REQUIRING CONCRETE RESULTS towards the “CURE” they promote. And, with all of the money that is put into “research,” including genetic research, while less than 5% goes toward helping the CURRENT GENERATION of Autistic individuals, it is reasonable to assume that any “CURE” that takes place will likely come in the form of “genetic testing” that will allow doctors to push parents into aborting their children (as is the case with the vast majority of Down Syndrome fetuses). So, with all of the financial corruption occuring within their organization, along with their lack of CHARITY for UNEQUIPPED PARENTS of Autistic children, their LACK of TRAINING and SUPPORT for Autistic adults, and their CREEPING EUGENICIST agenda, Autism Speaks will NEVER get my money!
Check out this website as a final answer to the “I am Autism” public service announcement created by Autism Speaks:
I AM AUTISM
(note: many of the above links have been either memory-holed, or are simply no longer available, since this article was first published, and so, have been restored using copies available through webarchive.org)