It’s the season for giving. But not all causes are worth your gifts and charity. As an autistic person, it’s time to set the record straight: stop supporting Autism Speaks.
Seriously. I cannot emphasize it enough. On a surface level, you might think I sound contradicting. This charity sounds like exactly what I’m doing right now: an autistic person…speaking.
If you know any autistic people in your life, they too will likely tell you to stop supporting Autism Speaks. Not only does this organization uplift the voices that “glamorize” autism for their own gains, but it also continually degrades the neurodiverse population.
We are not helpless. We are not incapable. Please listen to us. We don’t need an inaccurate mouthpiece speaking for us; we can do it just fine ourselves.
Without further ado, here’s why you need to stop supporting Autism Speaks. Now.
we don’t need a cure.
I cannot stress this point enough. Talk to any autistic person, and they’ll be quick to tell you that the last thing they want is a cure.
To insinuate this, that means we as autistic people are “wrong” and need correction. Our biological makeup “should” reflect the neurotypical norm. The most prominent strategy for doing this is ABA: Applied Behavioral Analysis. Simply put, you’re forcing neurotypical behaviors on young people in the worst ways possible.
ABA aims to hide the autistic traits, such as stimulating behaviors (“stims”), dislike of physical contact, and sensory issues, through negative reinforcement. If you aren’t following protocol, cue punishment. These punishments include withholding toys, games, books, and even physical restraint. Based off even this short rundown, you can bet that ABA is damaging and traumatizing.
Since Autism Speaks advocates for ABA as an effective treatment and behavioral intervention for autistic people, supporting them means you’re continuing a vicious cycle of silence and shame.
From its fruition in 2005 to now, we’ve see clear demonstrations as to why we need to stop supporting Autism Speaks. With money galore, we have to wonder where all the money ends up.
Only 1.6% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services. Autism Speaks spends 10 times as much—16%—on fundraising.
The public campaigns they’ve promoted include a video from 2009, “I am autism.” The video, presented to the United Nations, promised a threatening, ominous autism that “knows where you live” and “works faster than pediatric AIDS, cancer, and diabetes combined.”
The press release has since been taken down, but in a 2013 “call to action,” Suzanne Wright emphasized how the country has been failing autistic families, saying those with autistic children are “not living.” Except that, almost in the same breath, evidently they are living “moment to moment. In anticipation of the child’s next move. In despair, and in fear of the future.”
Autism Speaks doesn’t speak for me.
Some autistics don’t just ask you to stop supporting Autism Speaks; they even consider the organization a hate group.
The amazing moment Sesame Street brought on an autistic character was sweltered when they partnered with Autism Speaks for an early screening campaign.
Resigned autistic board member for the organization John Elder Robison wrote, “Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.”
For years, funding in the organization went into researching vaccine safety and inevitably fueling the absolutely incorrect notion that vaccines cause autism.
The group’s PR messaging has reinforced the misconception that autism is a destroyer of marriages, though research shows that divorce rates are no higher for the parents of autistic kids.
In 2011, the organization launched an effort with the Beijing Genomics Institute to map the whole genomes of 10,000 individuals from families with two or more autistic children, at a cost of $50 million. Not only does that depict autism as a childhood condition, but it also leads to decreasing amounts of research for actually living with autism, let alone as an adult.
All of this and more demonstrates why we need to stop supporting Autism Speaks. Putting our votes and dollars toward this organization takes away from the importance of disability rights and true support.
how you can support autism.
You wouldn’t think of supporting Black Lives Matter if it if white people ran it, right? Then stop supporting Autism Speaks because nobody on its executive board is actually autistic.
Any time you see the color blue and/or a puzzle piece associated with autism awareness, that’s all thanks to Autism Speaks. Please find other means of communicating your support, such as the color red or the infinity symbol.
There are truly amazing organizations out there made by autistic people for our benefit. These include the Autism Self-Advocacy Network, Autism Women’s Network, the Asperger/Autism Network, and many more. I also highly recommend checking out the #boycottautismspeaks on Twitter for some empowering voices in the autistic community.
Lastly, one of the absolute best things you can do, after you stop supporting Autism Speaks, is talking to autistic people. We’re here, and we so desperately want to speak up for ourselves so you hear us. Now it’s time for the world to listen.
Take care, and keep the faith. -Allie
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