Thursday, December 11, 2014

Keep Autism Speaks out of library-service discussion

In my dual personal and professional capacities, I am a strong advocate for the success of any project like Targeting Autism, which focuses the efforts of Illinois libraries to provide services to people on the autism spectrum and their families.

I want to caution the Illinois libraries’ project, however, about having any relationship or appearing to endorse the group Autism Speaks.

I read a project narrative this week citing figures by Autism Speaks, which set an overall cost of ASD to the nation at greater than $137 billion. The document, which describes a “growing prevalence of ASDs and accompanying support needs” as “a drain on the nation’s economy,” also describes Autism Speaks as a “national advocacy group.”

To begin with, I’m concerned about the reaction of people on the spectrum who qualify for supports. When they talk about autism, the writers of this document need to remember they are talking about people and the language they use describes these people as drains on the nation’s economy.

Furthermore, to many autistic people, including me, Autism Speaks is not a “national advocacy group,” but a promoter of hateful and degrading stereotypes.

To raise its funds, Autism Speaks resorts to language of fear and pity — which I equate to “hate speech” — in, for example, promotional films like “I Am Autism” and “Autism Every Day.”

Autistic self-advocate Amy Sequenzia even holds Autism Speaks’ “propaganda partially responsible for criminal acts committed against autistic children and adults.” (The page where I read this apparently no longer exists, according to an “Error 404” message viewed this evening.)

Autism Speaks has no autistic people on its governing board and, in the words of John Elder Robison when he resigned from its Science and Treatment Boards, “Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.”

In fact, organizations representing autistic and disability communities are asking corporate sponsors to end support for Autism Speaks.

I am so profoundly grateful to reflect the autism-spectrum demographic within the library profession, and am completely enthused by a dialogue about library services to autistic people and their families. Everyone involved needs to genuinely care about and serve people on the autism spectrum. And that’s not Autism Speaks.

In an earlier post, I addressed Robison’s resignation and the offensive op/ed that prompted it, by Autism Speaks founder Suzanne Wright. Even after resigning, Robison continues his thoughtful analysis. On his Wordpress blog today, Robision addresses Autism Speaks’ latest “public relations debacle,” a scientific proposal whose name evokes imagery of autistic people as “missing pieces” or defective.

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