John Elder Robison was a discussant
for the Autism
Social, Legal, and Ethical Research Special Interest Group
at the 2014 International Meeting for Autism Research (IMFAR). He ended up
taking the group to task, stating that the autism science community is headed
for disaster if it does not change course on several factors – and noting for
context the larger size of the US autistic community in proportion to other
minority groups such as Jewish or Native American communities. Mr. Robison
asserted that autistic people need to be the ones providing oversight and
governance for autism research. He condemned the use of words like “cure.” He
pointed out that researchers’ explicit or implicit efforts to eradicate autistic
people is a formula for disaster and needs to stop. And he affirmed that memoirs
and narratives written by autistic people are more trustworthy than writing
about autism by nonautistics.
Many thanks to IMFAR participant and community member Todd Melnick for transcribing this talk.
Many thanks to IMFAR participant and community member Todd Melnick for transcribing this talk.
Good morning,
I am the autistic person who was given the task of offering commentary on this 2014 IMFAR ethics panel discussion. One of the first things mentioned -- by Bryna Siegel -- were some of the questions the public asks those who work in the field. There was some talk of how scientists and clinicians might respond when queried. As examples, she offered, “There’s an epidemic of autism, what do you think?” “There’s more autism lately, what do you think?”
One question she didn't mention -- and I think it’s important to begin with this -- is What’s the meaning of “1 in 68” [the current CDC estimate for autism prevalence]?
I’ve served on the CDC and NIH committees to discuss the formulation of the research leading to such numbers, and how we derive them. I serve on the Interagency Autism Coordinating Committee (IACC) where we create the government’s strategic plan for autism. From the perspective of someone who saw how we got there, 1 in 68 tells me autistic people have always been a part of society, and are always going to be here. We are recognizing that the autistic population is bigger than anyone ever imagined.
Let me put in perspective what “1 in 68” means. 1 in 68 and rising means that there are more autistic people than there are Jewish people in the United States. There are more than twice as many autistic people as there are Native American.
Now let us consider autistic people as a group compared to Jewish people or Native Americans as a group. Who would you imagine would advocate for one of those groups? It would be a Native American or a Jewish person. Of course it would. We wouldn’t expect anything else. And yet we are still having a discussion about who should advocate for autistic people. What’s wrong with that picture?
I am the autistic person who was given the task of offering commentary on this 2014 IMFAR ethics panel discussion. One of the first things mentioned -- by Bryna Siegel -- were some of the questions the public asks those who work in the field. There was some talk of how scientists and clinicians might respond when queried. As examples, she offered, “There’s an epidemic of autism, what do you think?” “There’s more autism lately, what do you think?”
One question she didn't mention -- and I think it’s important to begin with this -- is What’s the meaning of “1 in 68” [the current CDC estimate for autism prevalence]?
I’ve served on the CDC and NIH committees to discuss the formulation of the research leading to such numbers, and how we derive them. I serve on the Interagency Autism Coordinating Committee (IACC) where we create the government’s strategic plan for autism. From the perspective of someone who saw how we got there, 1 in 68 tells me autistic people have always been a part of society, and are always going to be here. We are recognizing that the autistic population is bigger than anyone ever imagined.
Let me put in perspective what “1 in 68” means. 1 in 68 and rising means that there are more autistic people than there are Jewish people in the United States. There are more than twice as many autistic people as there are Native American.
Now let us consider autistic people as a group compared to Jewish people or Native Americans as a group. Who would you imagine would advocate for one of those groups? It would be a Native American or a Jewish person. Of course it would. We wouldn’t expect anything else. And yet we are still having a discussion about who should advocate for autistic people. What’s wrong with that picture?
