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Autism Speaks: The so-called Face of Autism

Autism Speaks infographic
Autism speaks does not speak for autistic people.

Nick Hughes

Opinion Editor

Autism Speaks barely helps autistic people

Autism Speaks is an international charity organization that works to promote awareness about autism. After looking at the finances and graphs that Autism Speaks published, I have an issue. An issue with a lot of charities I have noticed. Why are charities for profit? Why is only 20 percent of the funds that Autism Speaks has used for support programs and 49 percent used for awareness and acceptance? 

I am all for autism awareness and acceptance as has been evident in my past writings for the Snapper, but I do not agree with how Autism Speaks goes about promoting acceptance. My understanding of the examples that they have on their website is exploitative. I do not want to defame them, but I believe that autism acceptance should be about autistic people. There are two people that are on the board that is autistic. There are 26 people on the board. There should be a lot more representation for autistic people. 

Let autistic people decide what they are called

Also, I know I will be called out for saying autistic people over people with autism, but I want to make something clear: I am autistic and if I choose to say I am an autistic person then let me. Do not tell me how I should identify, you are not living the life of an autistic person and honestly, a neurotypical person has no place saying what an autistic person should describe themselves as. 

According to the Autism Self Advocacy Network (ASAN), “Autism Speaks uses its platform and advertising budget to portray autism and autistic people as mysterious and frightening. Their fundraising tactics increase stigma and create barriers to the inclusion of autistic people in our communities.”

As an autistic person, I think my opinion on what is good for autistic people should be my own. There are a lot of people saying what is good for me and there is no backing or proof for their claims. Autism Speaks does not understand my autism and I doubt they ever will. I think that they want a cure to autism; like autism is a serious, debilitating disorder. It is not, there is a lot of variety on the spectrum and I dislike that people not on the spectrum want to decide my rights. 

Autism is hard enough, and I do not need being told what is best for me. It is a spectrum disorder and there is a lot of differences for us autistic people. The walks are great, but what do they accomplish except to make the people walking feel good about themselves? I have never been to a walk and honestly, I do not want to go to a Walk. 

The Message

Autism Speaks has a message that says this to me: Autistic people do not have the right to decide for themselves. We do not have the capacity to make those decisions for ourselves and we are not capable either. It is infuriating and it makes me upset. According to Autism Self Advocacy Network (ASAN), “We work to empower autistic people across the world to take control of our own lives and the future of our common community and seek to organize the autistic community to ensure our voices are heard in the national conversation about us. Nothing About Us, Without Us!”

Autism Speaks mission is less appealing, “Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the life span, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of people with autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions.” This quote sounds great, but it is not true. The money that Autism Speaks receives is from used mainly for lobbying. According to the Autism Speaks 990 Non-Profit Tax Exemption Form, 42 percent of the money is used for awareness and lobbying. 32 percent is used for research. Less than two percent is used for Family services. The numbers above are incorrect and were skewed to make Autism Speaks look better. 

Who actually helps us?

Two percent used to help those families affected by autism. 42 used to lobby congress. Then there is the 16 percent used to fund the events for fundraising and 32 goes towards research. According to ASAN, “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 10x as much as —16%—on fundraising. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world: some salaries exceed $500,000 a year.”

This is not acceptable at all and it needs to be put out there. There are other groups that are doing well out there. Such as ASAN and many others.