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Op-ed | Autism Speaks does not speak for autistic people

Published: Monday, December 10, 2012

Updated: Monday, December 10, 2012 15:12

 

Recently, I have seen signs on campus for a fundraiser for the Autism Speaks charity, run by a campus group called “Voices for Autism.” While I respect the desire of the campus group’s founders to advocate for and help autistic people, as an autistic student here at Tufts, I am deeply uncomfortable with their support for Autism Speaks.

Autism Speaks is an organization that ostensibly advocates for autistic people’s needs. Their focus, however, is on treatments and cures for autism, rather than accommodation or support. It has been criticized throughout many parts of the autism community for the demonization and mischaracterization of autistic people. Autism Speaks performs a sort of third-person activism: it claims to advocate for autistics without inviting us to speak or challenge their ideas about disability, accommodation and identity. Many of us, even those of us who are considered more “severely” autistic, are able to define what our own community needs without non-autistic people defining the entire narrative on autism and the autistic experience. The attitude they adopt towards autistic people is paternalistic, and assumes that they, as “normal” people, know what is best for us, without consulting any autistic people for their opinions on their policy.

However, what is most galling about Autism Speaks is that they have given support to parents who describe their fantasies about murdering their autistic children because of the difficulty of raising them. This is morally reprehensible and should be utterly repudiated by anyone who purports to actually advocate for autistic people’s needs. Autism Speaks gives a voice to disgruntled parents who are uncomfortable with raising a neurologically variant child, rather than those of us who are autistic ourselves. I was brought up in a family that expressed tacit resentment over having an autistic child, and constantly felt inferior to those who were not autistic. It took me until I was in my early twenties to discover that one could exist as an autistic person without the shame, self-hatred, and frustration that I endured throughout my childhood and adolescence.

My existence is not tragic. I do not deserve people’s pity. I am not merely a burden on society, and I do not necessarily seek a “cure.” I don’t claim that my life is perfect, but I do think that there are both benefits and drawbacks to being autistic, and to “cure” me would be to fundamentally alter my psyche to the point that I would no longer exist in any recognizable fashion. All I ask for is equitable treatment and the right to access the services I need in order to live the best life possible.

If the Voices for Autism group supports an organization like Autism Speaks, I cannot recognize it as a voice that truly advocates for me, and for my autistic brothers and sisters. Autism Speaks does not speak for me, and there are many others for whom it does not speak. I urge Voices for Autism to reconsider their support of this organization, and I encourage them to support organizations like the Autistic Self-Advocacy Network that take a more active role in fighting for autistic self-determination and recognition, rather than using infantilization and misplaced hatred.

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Finn Gardiner is a junior majoring in sociology. He can be reached at Finn.Gardiner@tufts.edu.

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