I updated “I’m Autistic. Here’s what I’d like you to know.” with selections from “THINKING PERSON’S GUIDE TO AUTISM: On Hans Asperger, the Nazis, and Autism: A Conversation Across Neurologies” on functioning labels.
Function labels are what others use to try to control us and act as gatekeepers to the things we need to survive and thrive. Functioning labels are weapons used against us.
More on functioning labels from that piece:
I do agree with Sheffer that sorting autistic people into “high-functioning” and “low-functioning” bins carries echoes of Nazi ideology. Under the Reich, being branded as ineducable or low-functioning meant you were expensive ballast on the ship of state, and worthy of a death sentence. But let’s not forget that in America for most of the 20th Century, a diagnosis of ‘“classic” autism meant life-long institutionalization on a lockdown ward where patients were routinely beaten, restrained, and subjected to the horrible experimental treatments. That’s barely better than a death warrant, and it was mainstream American psychiatry for most of the 20th Century.
There is a long history of functioning labels being used to divide the Autistic community, both externally and internally. Externally, function labels get leveled at us from the autism community. (The Autistic community is the community of people who are actually Autistic. The autism community is a larger community comprised of everyone with any stake in autism at all: Autistic people plus non-autistic parents of Autistic children and adults, doctors, researchers, teachers, and so on.)
The thing so many Autistics have pointed out about functioning labels is that we are called “low-functioning” by those who choose to ignore our strengths and “high-functioning” by those who choose to ignore our challenges. There is no official definition for these functioning labels. I’ve noticed researchers defining what they mean when they say they are studying a low functioning or high functioning population, and the chosen definitions vary from study to study, complicating meta-analyses. The labels are meaningless in an objective, scientific sense.
Several years ago I was looking for some help and was rejected by one agency, which said I was too high functioning and referred me to another agency. That second agency rejected me for being too low functioning. I concluded that function labels are what others use to try to control us and act as gatekeepers to the things we need to survive and thrive. Functioning labels are weapons used against us.