Since 2008, the nonprofit organization Autism Speaks has labeled April 2 “Autism Awareness Day,” with the goal of raising awareness of autism. As a result, you may have seen evidence this past week of Autism Speaks’ marketing efforts: famous buildings lit up blue, or their corporate logo (a poorly drawn puzzle piece) as someone’s new profile picture. Such efforts speak to a wonderfully blissful sense of self-congratulation, but do little for people who actually are autistic.
The truth is, most people who live with an Autistic Spectrum Disorder (autists) do not necessarily need or want you to light up your house blue, to share a picture of a puzzle piece on Facebook or anything like that. Generally speaking, they want a lot of what everyone else in the world wants: safety. Peace of mind. A roof over their heads. Food on the table. Life. Liberty. Pursuit of happiness. Sadly, many autists lack even these basic needs and do not have the advocacy infrastructure that other disadvantaged minorities enjoy.
Autism Speaks is by far the largest and most powerful “autism advocacy group,” but many autists believe it fails to represent them. They have ample evidence for this point. Autism Speaks spends very little (less than 5 percent) of their money actually providing services to autistic individuals and families, while more than half of their budget goes to administrative expenses and fundraising. They play on false fears about autism and use condescending and insulting rhetoric (“Autism stole my child,” “My daughter’s autism ruined my life,” etc.) to increase donations.
A quick Google search reveals a laundry-list of offenses: support for electroshock “therapy,” saying autism was “worse than AIDS or cancer” and so on. These claims demonize autism and in many ways autists themselves, and fail to represent the true voice of the autistic community.
As a scientist, I find the theories and potential mechanisms surround autism fascinating. As a human, I have a few very close friends who are autistic, and they are some of the most incredible people I know. From these two roles, I have learned I must respect the sensitivity that must be given to persons with mental illness in research, medicine and everyday life.
Not only do these individuals face challenges tied to their condition, but they must also exist in a systematically oppressive society that treats autism and the autistic community as enemies. Autists have been assaulted by state officials, abused by caregivers and killed by family members.
Beyond physical threats, autists face a society that excludes and ostracizes them. Popular conceptions of autists in the media portray them as dangerous, unstable, stupid and helpless. For example, after mass shootings, “experts” are brought in to assess whether or not the shooter had autism. Despite little to no reliable evidence, commentators have deemed many of the mass shooters of the past few years to be “autistic” or at the very least “mentally ill.” I can only imagine what it must be like for an autistic child or teenager watching the news to hear these claims. They listen to respected leaders in society and the popular press claim they will murder innocent people, possibly their own family, in cold blood because of something intrinsic to their identity. There is no question autists suffer a heavy burden of oppressive social structure.
I believe that much of the talk of Autism Awareness and support for Autism Speaks comes from a good place. I do not think that such actions are done out of malice towards the autistic community, but rather a fundamental misunderstanding of what exactly autism is.
Autism Speaks, like many people I know, views autism as a sort of debilitating leprosy. The “disease” is something that must be cured, removed and scourged from the earth. Society views autism as something that subtracts from a person’s identity: something that keeps the person from being fully human. Unsurprisingly, many people with autism do not see things that way. They see autism as a meaningful part of their lives, not that their lives are meaningful in spite of it.
But if sharing posts on social media or giving Autism Speaks free advertising is not helpful for the cause, what is? What can Brandeis students, in our proud tradition of social justice, do to combat this systematic oppression? We can start by changing our mindset of autism.
Instead of being “aware” of autism, we ought to try to be more “accepting.” We should show kindness to autists, respect them and give them space and patience when needed. Talk to them in a friendly and respectful manner, just as you would anyone else. The advice reminded me of what I learned back in kindergarten, to follow nothing less than the golden rule: Treat others the way you would want to be treated.
Nobody is perfect. We all have our strengths and our weakness, and autism is merely a collected, well-defined set of strengths and weaknesses. We should respect these differences and learn to put our own dangerous and preconceived notions behind us. We should accept autists for who they really are as people and break out of the paradigm in which we incorrectly view them as helpless, dangerous or diseased. Autism Speaks, and society as a whole, fails to appreciate the intrinsic dignity and value of autists as human beings.