While reading Ginger’s rundown of the Autism Speaks annual IRS (US federal tax) Form 990, it occurred to me that this organisation conducts its financial operations in many of the same ways as do some of the less-savoury megachurches. (I’m not against religion in general or any particular religion, but recognise that churches are run by humans with typically human failings, and that big-scale churches and big egos can result in big-scale failings.) That probably seems like a really odd analogy, but there are a number of parallels, all of which are disquieting. (As another parallel, in the US both churches and nonprofit organisations are exempt from paying federal income taxes.)
Here’s the pathological model of the megachurch fundraising style:
- Vividly describe hell and damnation, identify the devil, and play upon fears to draw in funds;
- Use fundraising monies to create larger, more dramatic and more widespread efforts to fundraise / proselytise;
- Swamp out, or take over efforts by smaller [competing] organisations / congregations and brand your own as The Source for true information;
- Use monies to create larger real-property resources ostensibly for promoting the cause, but mostly to be used by the oligarchy;
- Create large-scale projects that require vast amounts of funding;
- Make the members of the oligarchy the reviewers and the main distributors / recipients of the funding;
- Use that funding generated for administrative purposes, including overseeing those projects, and of course to support greater fundraising efforts;
- Cultivate charismatic figureheads, being sure that information about the noble cause is interpreted through them (rather than through other sources that may not support the canon, including the ostensible recipients of the fundraising);
- Ignore, dismiss or denigrate sources of information that disagree with yours — you have the Truth and others cannot promise cure and salvation — if people heed the others they will be turned away from the Truth and will be led into the aforementioned horrors;
- Keep gospel focused upon individual salvation / feel-good efforts rather than working for social justice.
Autism Speaks is an organisation meant to benefit people-with-autism, but is not run by autistics (which is as nonsensical as the NAACP not having any African-American people on their board). Co-founder Bob Wright says, “We are committed to giving a voice to those who don’t have one.” This gives me the impression that they don’t plan to have any leadership by autistics, either. They’ll just tell everyone what they think autistic people would want to have said. So much for “Nothing About Us Without Us” social transformation.
The organisation does a LOT of fundraising and awareness projects. They created the heavily-biased “Autism Every Day” video (a propaganda piece designed to make parenting children look as horrifying as possible, including the scene of a mother describing wanting to kill her autistic child), plus other media efforts on various television programs designed to “raise awareness” about the purported “epidemic” and demonstrate how terrible it is to have a child “afflicted” with autism.
Autism Speaks has become a very large organisation; they merged with (swallowed up) Autism Coalition for Research and Education (ACRE), National Alliance for Autism Research (NAAR), and Cure Autism Now (CAN), and has chapters in the United States, Canada and the United Kingdom. The purposes (as described by their Web site) are mainly centered around fundraising:
- fundraising for research into causes and cures for autism;
- connect parents to researchers who, well, need research subjects;
- pushing for legislation to support research into causes and cures for autism;
- awareness in the public about the epidemic of autism that is devastating families (to create a larger fundraising base);
- walks, golf events, galas, concerts, promotional events at various retail chains et cetera for fundraising.
This brings me back to the finances, as described on Ginger’s blog. The millions of dollars funnelling into and through just a few people is staggering. So is the Form 990, which runs 73 pages including supplementary statements and schedules. Unfortunately, I have a hard time reading and making sense of masses of numbers. I also have a much different kind of hard time digesting the wisdom of a charitable organisation that brings in over $ 21 million of donations — and then doesn’t spend it toward providing concrete assistance to the people to whom it purports to serve.
As a genetic condition, autism is not a disease caused by a pathogen or by environmental toxins (at the risk of being repetitious, it is not for example caused by mercury poisoning from Thimerisal in vaccines — Thimerisal was never in the MMR shot, and has been absent from other vaccines for several years now, but that has not changed the number of new diagnoses). There are an unfortunate number of expensive, dubious or dangerous “cures” and treatments out there, some of which have killed autistic children.
Describing autistics as people stricken with horrifying conditions, and setting them up as the subjects of potentially dangerous medical research does nothing towards those ends. People don’t need to be “cured” of autism any more than they need to be “cured” of homosexuality. What autistics do need are appropriate educational and occupational services, social support services for adults and for families (including respite care, because parenting children with major educational or social difficulties is very stressful and time-consuming), and the real social justice efforts of working against discrimination.
Oh, and something else autistics need is a voice in the running of agencies that benefit autistics. But that’s not what this agency is about — it’s not called “Autistics Speak”.