Advocacy is a tricky situation when it comes to mental illness. Websites, charities, and celebrities all speak for people who cannot talk for themselves, but is that the truth? When I was first diagnosed with Autism Spectrum Disorder, I wanted information. This is the site that I thought would help me the most: Autism Speaks.
The charity is the face of the advocacy movement for Autism Spectrum Disorder. However, the first thing that a person sees is a young boy and a puzzle piece. These are the first problems with the organization. The average person who is considered autistic is young, and male when in reality the reason for this stereotype is the diagnosis criteria and the skills taught at the age of diagnosis. The puzzle piece is troubling because of the symbolism, implying that Autistic individuals are incomplete and can be fixed.
Now, I do not suggest that you dig into the entire history of the organization, but consider the following. The site is built for parents who are scared. When autism is defined, it uses bullet points of features that are nonconformist and mainly associated with children. This does nothing for the autistic adults, many of whom have no resources to rely on for a new diagnosis. Autism Speaks uses donations to focus on cures for the condition rather than support families of autistic individuals. And above all, none of their board represent the demographic that they represent.
So, why should you care? Well, these are the people talking about the condition that the media is listening to. Other mental illnesses are supported with groups that share experiences, promote identities and show that illness does not prevent success. Why should autism be any different? Should people who want to remove someone’s voice from the conversation be trusted to speak for that person? How do we advocate for ourselves when we aren’t considered people? These are questions I will probably live with forever, but I would like to hear your perspective.
Here are some links about Autism Speaks
http://www.teenink.com/opinion/social_issues_civics/article/507918/The-Controversy-of-Autism-Speaks/
In my experience, people on the autism spectrum are their own best, highly capable advocates... and the dwindling few who denigrate their very humanity are increasingly pitiable and irrelevant.
ReplyDeleteTrue, and organizations are quickly outnumbering Autism Speaks because the people who were unsupported during the large upswing of the organizations are taking steps to advocate for the next generation. Additionally, employers are actively seeking individuals on the spectrum because of their different perspectives. Children cannot advocate for themselves, that is my concern.
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