In the last decade, awareness of autism has expanded broadly in large part due to the money raised and spent by the advocacy organization, Autism Speaks. For most people, Autism Speaks is their entry point into learning about autism spectrum disorder either through searches on the web or their wide reaching marketing efforts. However, earlier this year, a group of autism advocates started the Boycott Autism Speaks campaign in order to raise awareness about the inner workings and fear mongering tactics of the fundraising behemoth. Today a ever growing number of activists are leading the charge for self-advocacy and their efforts to move the public discourse on autism away from a “causation and cure” mentality to one that allows autistic people to speak for themselves.
At the core of the debate is how monies are allocated by the Federal government or raised from within communities and how those funds are spent in general for people living on the spectrum. As the highest profile player, Autism Speaks pulls in the most in donations and grants. In assessing Autism Speaks’ 2010 Non-Profit Tax Exemption Form, the Autistic Self Advocacy Network (ASAN) determined that only 4% of Autism Speak’s budget goes towards the “Family Service” grants which are the organizations’ channel for funding services towards families while executives within the organization were receiving salaries exceeding $400,000 per year. In 2012, the numbers were more damaging. Based on a reported expenditure of over $62 million, Autism Speaks allocated funds as follows:
• 36% = Salaries, benefits, payroll taxes: $22, 861,019
• 25% = Science grants/awards: $15,790,797
• 5% = Travel, meals, lodging, entertainment, catering: $3,034,109
• 4% = Advertising & Marketing: $2,827,316
• 3% = Family Services grants & awards: $2,048,552
(Percentages are based on the total reported expenditures of $64,127,886) Source: Boycott Autism Speaks
Autism Speaks’ has no autistic individuals on their board of directors, additionally, their tactics for raising funds have been called “fear mongering” and “dehumanizing” for portraying people on the spectrum as burdens on society and the condition as something that must be cured. The group has also promoted the controversial Judge Rotenberg Center, a Massachusetts special needs residential and day school facility which is under Department of Justice and FDA investigation, for the use of painful electric shock against its students.
CITIZEN AUTISTIC provides insights into the growing autism rights movement, where the goal is to move away from awareness of the disorder and shift the national dialogue towards more acceptance and channeling research and monetary support towards developing technologies and opportunities for autistic adults and families.
Too Sane For This World
In TOO SANE FOR THIS WORLD, director William Davenport allows twelve adults with different types of autism to let their voices be heard. The film, shot and edited with a mostly autistic crew, allowing them new opportunities to work together and explore a natural talent for working with technology. The film features twelve people, some with Aspergers and others considered “high-functioning,” such as Temple Grandin (author and professor), Robyn Steward (a musician and mentor for others on the spectrum), Greg Yates (studied biophysics and psychology at U.C. Berkeley and MIT respectively) and Rudy Simone, who has written four best-selling books on Aspergers.
Loving Lampposts: Living Autistic
Finally, LOVING LAMPPOSTS: LIVING AUTISTIC takes a look at two movements: the “recovery movement,” which views autism as a tragic epidemic brought on by environmental toxins, and the “neurodiversity movement,” which argues that autism should be accepted and that autistic people should be supported. After his son’s diagnosis, filmmaker Todd Drezner visits the front lines of the autism wars to learn more about the debate and provide information about a condition that is still difficult to comprehend.