I updated the “agent, not a patient” section of “I’m Autistic. Here’s what I’d like you to know.” with a selection from “Liz Jackson: Designing for Inclusivity – 99U”.
disability’s no longer just a diagnosis; it’s a community
Tag: autism
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.
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 compliance and behaviorism.
Our non-compliance is not intended to be rebellious. We simply do not comply with things that harm us. But since a great number of things that harm us are not harmful to most neurotypicals, we are viewed as untamed and in need of straightening up.
What I am against are therapies to make us stop flapping our hands or spinning in circles. I am against forbidding children to use sign language or AAC devices to communicate when speech is difficult. I am against any therapy designed to make us look “normal” or “indistinguishable from our peers.” My peers are Autistic and I am just fine with looking and sounding like them.
Here are those selections in the context of their surrounding grafs:
Our non-compliance is not intended to be rebellious. We simply do not comply with things that harm us. But since a great number of things that harm us are not harmful to most neurotypicals, we are viewed as untamed and in need of straightening up. Sheffer writes that Dr. Asperger called this non-compliant trait malicious, mean, and uncontrollable. She notes him describing Autistic children as having a “lack of respect for authority, the altogether lack of disciplinary understanding, and unfeeling malice.” That appears to be the majority opinion of us today as well. If we were not threatening to the social order in some way, there would not be therapies designed to control how we move our bodies and communicate.
Don’t get me wrong: I’m not anti-therapy. I embrace therapies that help me with some of my Autistic co-occurring conditions like circadian rhythm disruption and digestive malfunction. I welcome treatments for epilepsy-a co-occurring condition found in 25% – 30% of Autistics-because I’ve seen how much suffering epilepsy brings. My late fiancé died from SUDEP, a fatal complication of epilepsy, and before his death I watched seizures shred his attempts at living a full life. What I am against are therapies to make us stop flapping our hands or spinning in circles. I am against forbidding children to use sign language or AAC devices to communicate when speech is difficult. I am against any therapy designed to make us look “normal” or “indistinguishable from our peers.” My peers are Autistic and I am just fine with looking and sounding like them.
“The willingness of clinicians to go along in the face of great evil is what made it possible for the Nazis to transform the Austrian medical establishment into an industry of death. If you weren’t risking your life by actively resisting, you became complicit in the horror that was created. That’s a heavy lesson for this historical moment, when government officials are routinely asked to ignore norms and ethics to fulfill various agendas.”
I added a selection from “Ann’s Autism Blog: Safeguarding and Church – An Informal Guide” to “Eye Contact and Neurodiversity”.
Autistic people may not give eye contact. They can either hear, or look, but not both. It is not a sign of guilt or unwillingness to engage.
Source: Ann’s Autism Blog: Safeguarding and Church – An Informal Guide
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