The Language of Autism: Disease or Difference?

“Our desire not to be rhetorically dehumanized is not a type of hatred or guilt or stone-throwing,” wrote Ibby Anderson-Grace, an autistic scholar and advocate. “It is a natural reaction to hearing the type of person you are, or the type of person your kid is, talked about in ways that seem to suggest not being or counting as a human person. How do you know Finn won’t read that the way you and your wife claw at each other is all his fault because he is not really a person?”

Finn read? The thought had scarcely occurred to me. Not long before, we had been told that Finn, now 6, had the cognitive age of an 11-month-old child. But things have changed since I first wrote about Finn; he used to point to an object he desired, his one concrete method of communication. Now he uses American Sign Language for music and movie and dog and shoe and food and drink and up and help and stop and wait and candy. He is beginning to shake his head for no and nod for yes, and when I look into his eyes I see now that he loves us as fiercely as we love him. He only rarely bites us anymore, or wraps an angry hand around his sister’s hair.

So who knows what’s in store?

On Autism Rights, Ethics, & Priorities

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.

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?

Read more here.