Wednesday, June 27, 2012

Why I Don't Want Autism Speaks Speaking For Me

It has been mentioned to me that my position on fighting/curing autism in my "I'm Autistic" post could probably use some clarification.

My words on the subject were as follows:

"On a similar note, there are autism research organizations that talk about "fighting" and "curing" autism, which I find extremely uncomfortable.  My AS is as much a part of me as my love of writing or my hair color.  The idea of eliminating autism spectrum disorders is essentially the idea of eliminating the people who have them.  I don't want a world without us; I want a world in which society accommodates and understands us,  and helps us to thrive in a mostly neurotypical world without trying to exterminate what we are.  So please don't send me links to Autism Speaks or talk to me about raising awareness so a cure can be found."

Of course, I am what they call high-functioning.  I can communicate verbally.  If I feel pain, I can go to a doctor and clearly state where it hurts, rather than suffer in silence and possibly even die as a result of my inability to express myself.  But what about those who can't speak?  What about those who are low-functioning and can't advocate for themselves?  Shouldn't I be happy that there are groups like Autism Speaks fighting to help them, to break them out of the prison their own bodies have built?


Or, to be less general, I am not happy or thankful for Autism Speaks.  There are organizations that I am proud to support, such as the Autistic Self Advocacy Network or the Academic Autism Spectrum Partnership in Research and Education.  I am not against all advocacy and education regarding autism spectrum disorders.  But I am against Autism Speaks and their method of "advocacy." and I always will be.

Here's why.

For starters, that's Autism Speaks' budget as of 2010.  Notice that only four percent goes to Family Services, i.e. the programs that would actually improve the quality of life for an autistic person.  The majority of the budget goes into research, and the majority of that research is devoted to things such as finding a cause for autism or exploring possibilities for preventing autism, such as prenatal testing.  The focus of their research is not to find educational strategies or therapies to help those who can't communicate in the neurotypical sense.  Their focus is on eliminating autistic people.

Also of note: Using funds to help families is not a priority for Autism Speaks, yet their rates of executive pay sometimes exceed $400,000 annually.  Charity Navigator only rates Autism Speaks' financial health at two out of four.  And Autism Speaks' fundraising expenses exceed their spending on most of their other programs.  If you're thinking, "So?  Fundraising helps autistics and raises awareness," well...

Autism Speaks has some of the most horrifically offensive fundraising and advertising tactics of anything ever.  They use scare tactics and threatening language to demonize autism.  In one infamous and now pulled ad, "I Am Autism," Autism Speaks compared autism to pediatric AIDS and gave us gems such as

"I am autism.  I’m visible in your children, but if I can help it, I am invisible to you until it’s too late.  I know where you live.  And guess what? I live there too.  I hover around all of you."
"I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness.  I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die?  And the truth is, I am still winning, and you are scared. And you should be."
among others.

Autism Speaks loves to perpetuate stereotypes that autistic people are completely helpless, and a burden on society.  They display autistics as an anomaly that needs to be eliminated.  They prey on parents' fears and exacerbate them in the hopes of gaining money.  In a documentary created by Autism Speaks, families with autistic children featured in the film were told to take their children off of therapy during the filming, to ensure that everyone watching would see what a living hell the families' lives were.

Not a single member of the Autism Speaks Board of Directors has an autism spectrum disorder.  The organization is made up of neurotypical people, imposing their own standards of normalcy and healthiness onto a community that they are not a part of, and that often speaks against them.

This is not the norm for disability activism.  Most disability advocacy organizations and charities include those with the disability in question in their decision-making and leadership processes.  But not Autism Speaks.

Still, what about the low-functioning autistics?  The ones that can't communicate?  Don't they need groups like Autism Speaks, when all the higher functioning people on the spectrum are busy arguing that they don't need a cure or advocacy organizations?  Aren't their struggles being ignored?

First of all, people can communicate in non-verbal ways.   Groups like Autism Speaks ignore this, because they're too busy trying to eliminate autism rather than help those on the spectrum function in a mostly neurotypical world, which makes it even harder for these people to communicate clearly.  And it makes them feel broken and useless.  As a Tumblr poster, the-goblin-king, stated, when responding to another poster expressing pity for her brother, who was "stolen" by autism:

"Please, I hope you listen: People can communicate in non-verbal ways. Verbal communication isn’t the only communication, and it is not the superior way of communicating.
I was non-verbal throughout childhood. People felt sorry for me. Family members felt sad for me, people just like you.  They felt I was stolen, felt I was less of a person because I could not voice my thoughts like they could.
At first, I was angry at myself. I felt broken. To this day, I still feel broken sometimes, and you know why? Society, for the most part, makes me feel this way. In society, I am something to be pitied, I am something to be ridiculed, I am something that others have to defend, never myself. I am one of the many adults who were “stolen” by autism as a child, from birth.
Don’t feel sad for him. Autistic people don’t need pity. I don’t need pity, and I’m sure your brother does not need pity. He’s not the problem here. The way we, the supposedly broken, stolen people, are viewed, are stereotyped, that is the problem. The way we are seen as a burden on not just our families, but the entire state and nation, that is the problem. Your brother is a person, someone deserving of love, understanding, and acceptance, not pity."

And this is why I can never support Autism Speaks, or any such organization or individual who ignores what the ASD community, even the low-functioning members of that community, really wants in favor of eliminating us from the future.  I will never fight or advocate for a cure, just understanding and assistance, which Autism Speaks completely lacks.


  1. Thank you for posting this, Autism Speaks seeks to destroy something that I consider to be a gift, I am glad that someone is finally speaking out against them.

  2. Truly fantastic post. Your arguments are sound and effectively communicated, and you have advocated well for your very thoughtful position. I agree that autism is a gift and that many of the problems associated with it stem from poor treatment from people who do not understand how to relate to the autistic mind. I applaud you for taking a stand for yourself and others in a society that sorely needs to make room for more real people.

  3. This is a really good post. You make some valid points that I never thought of.