Autism Speaks is the face of autism advocacy, and is also the largest organization in the US for this cause. Each year, they help thousands of autistic people with support resources, job placements and scholarships. Under normal circumstances, I would be in support of such an organization. However, many of their ideals and actions have put me off and left a bad taste in my mouth.
1. Nobody on their board is autistic.
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An organization that advocates for the full inclusion and working rights of people with autism should practice what they preach.
2. They want to "cure" autism.
Autism isn't cancer, AIDS, or the common cold. It doesn't threaten the lives of those who have it, nor is it contagious, but Autism speaks treats it like a menace. Temple Grandin, a prominent face in the autistic community, said, "If I could snap my fingers and be nonautistic, I would not. Autism is part of what I am." Autism Speaks is contributing to the stigma surrounding autism and treating like a problem to be solved, rather than the condition that it is.
3. They misuse their budget.
In 2011, Autism Speaks brought in around 50 million dollars, but only spent 4 million on support for autistic people and their families. This amounts to about 9% of their revenue, and that number is going down. More recently, it has dropped to about 4%.
4. No, really. They really misuse it.
Over 30 percent of the revenue that Autism Speaks brings in goes to paying their executives, independent contractors and other various higher-ups. Paying employees is fine, but when money is given to the administration before the people they claim to help, I start to take issue.
5. Their marketing.
Many ads from Autism Speaks center around the supposed menace that autism poses. Most famously, their 2009 ad "I Am Autism" received so much backlash that it was removed from all corners of the internet, save for one low-quality video on Youtube. TIME Magazine wrote a piece on it, which you can read here. Some highlights include more than a minute of an ominous voice explaining that autism will destroy the bank accounts, marriages and general happiness of those who know someone with it.
6. They believe that vaccines cause autism.
The battle between anti-vaxers and those of us with scientific facts and common sense continues to rage. Logically, the number one organization for autism advocacy should be on the side of research and fact. However, many of their most senior employees and scientific leads have been fired after coming out in support of the scientific community.
7. Simone Greggs.
In 2012, Simone Greggs, a mother to an autistic child, applied for a job with Autism Speaks. When she explained that she would need to leave early one day a week as an accommodation for her son, the job offer was rescinded. Even after she found a way to stay at work, Autism Speaks still refused to give her the job.
Autism advocacy is a hugely important cause, and research into the causes of autism also needs much more public support. However, the methods and ideologies of Autism Speaks are detestable. They do help many people with autism, however, there are alternative organizations that do the same work, but do it right. Autism Speaks is not a good organization, so next time that you want to "Light It Up Blue," you should reconsider your support.
