By @rtanen]
According to their mission statement (
http://www.autismspeaks.org/about-us/mission), Autism Speaks is “dedicated to funding global biomedical research into the causes, prevention, treatments and cure for autism; to raising public awareness about autism and its effects on individuals, families and society; and to bringing hope to all who deal with the hardships of this disorder.” Autism Speaks considers the existence of autistic individuals to be an “urgent global health crisis. It is [their] firm belief that, working together, [they] will find the missing pieces of the puzzle.”
Note that Autism Speaks mentions the “prevention” of autism. As an autistic individual who considers many of the strengths and weaknesses caused by autism to be important aspects of herself, I would not wish to be prevented. People considered to be “low-functioning,” such as Amanda Baggs (
http://ballastexistenz.wordpress.com) also do not feel that their existence should be “prevented.” Interestingly enough, many people, including medical professionals, have made attempts to “prevent” the continuing existence of Ms. Baggs by, for example, pressuring her not to treat life-threatening medical problems. What, exactly, would the prevention of autism entail? Would it mean that no future children would be born that are similar to myself or Ms. Baggs? Perhaps Autism Speaks, a group not composed of autistic people, would consider that an acceptable, even desirable, outcome, but I do not.
Additionally, Autism Speaks funds research into a cure for autism. Such a cure would, presumably, leave a formerly autistic person neurotypical. The majority of autistics online believe that our autism is a fundamental part of our personalities, and any cure that rendered us neurotypical would effectively destroy us and leave different people in our places. There are better methods of solving problems presented by autistic weaknesses, such as modifying light fixtures that make it difficult for some to concentrate, and stating things clearly instead of assuming others will automatically pick up on them. As autism provides useful strengths as well as weaknesses, curing autism would be throwing out the baby along with the bathwater.
According to their 2011 990 tax form (
http://www.autismspeaks.org/sites/default/files/documents/2011_tax_form_990.pdf, page 2), they spent $4,477,702, or only 10.89% of $41,134,234 (their total program service expenses) on providing resources for families of autistic children. $24,053,561, or 58.48% was spent on research into areas such as those mentioned in above paragraphs. Finally, $10,238,115 or 24.89% was spent on publicity events and tools such as their website, World Autism Awareness Day, and more.
Does this sound like the expenditures and goals of an organization that cares about autistics, such as the CEO of Sprout’s son? If you are interested in supporting autistics via donations to nonprofits, you may wish to look into other groups, such as the Autism Self Advocacy Network. Try to find groups with a significant number of autistics in positions of power (not just one token on the advisory board).
Even donating to organizations unrelated to autism, such as UNICEF, is better for autistics than donating to Autism Speaks is, because money sent to Autism Speaks can do more harm than good. Autism Speak’s “awareness” campaigns promote harmful stereotypes about autism, such as the idea that it “takes away” normal children. Autism Speaks claims that my family cannot engage in enjoyable activities, and that my parents divorced because of me. (Note that my parents enjoy a happy marriage.)
Recently, Autism Speaks directed families attending its “Resource Fair” to the Judge Rotenberg Center, a group that uses electrical torture (not electroshock therapy, which is administered to an anesthetized, often consenting patient) to try and get autistic children and others to stop behaviors such as swearing, getting up out of one’s seat during class, closing one’s eyes for more than 10 seconds, or touching one’s hair, claiming that such behaviors are violence or self-harm. When I heard that Autism Speaks was endorsing the JRC, it felt like hearing an American political party I disagreed with was endorsing terrorist groups. I spent the whole day feeling literally sick to my stomach. If Autism Speaks had a smaller budget, they could not have held such an event, and vulnerable parents might not have been lured in by the promises of the JRC.
Autism Speaks does not speak for autistics. If you support people on the autism spectrum, please donate to other organizations.
This is an adaptation of the author’s letter to Sprouts Farmer’s Market, sent in June 2013 with no response. The author is a high school student with Asperger’s Syndrome.
Autism Speaks Hurts. Real People Speaking. 