The image on the left captures a Tweet promoting an opinion piece by Alison Singer. It reads:
"Spectrum (Autism Research News) @Spectrum "Pretending people with profound autism don't exist by eliminating language to describe their symptoms is itself ableist," writes @alisonsinger in this Viewpoint. @AutismScienceFd
spectrumnews.org Opinion: It's time to embrace 'profound autism' | Spectrum | Autism Research News
Ms. Singer's OpEd brought to mind the published opinions of Dr. Benjamin Rush, who believed that Black skin was the result of a mild form of Hansen's disease, and his pupil, Samuel Cartwright, who imposed the terms Drapetomania and Dysaesthesia aethiopica for the singular purpose of manipulating public policy in the slaveholding South.
Cartwright's abuse of science to preserve the inhumane enslavement of those who share my race (because he deemed it convenient to the comfort of himself and his southern white peers) is called scientific racism. So is what Singer and her small but influential group of frustrated autism parents and guardians doing by promoting this label as a means to a segregated end, scientific ableism?
During this moment, when the American Psychiatric Association is just beginning to confront and acknowledge the harm done by its racist past, witnessing these disingenuous attempts to bombard opinion pieces to force an unneeded label that centers the worst moments of high-support-needs autistics is extremely disturbing. This driving of the parent-created 'profound autism' label is too akin to that ghastly habit of legalizing harm through pathologizing difference. In other words, it seems like the ableist equivalent of scientific racism.
The long and intentional effort to diminish my nonspeaking autistic son's civil rights and personhood by the constant piling on of dehumanizing labels in the name of justifying their desired shift towards mandated increases in institutionalized methods of care and research that are to this day harming those meant to be helped should not be happening in this millennium. The ongoing horrors in institutional care settings should concern us more than adding a label to wrest control of where and how autism public policy and funds are distributed and managed. The autism conversation has wrongly followed the path of enforcing behavioral compliance. It is too much like the enforced compliance codified into laws and imposed upon my enslaved ancestors. It must find a new, humane direction.
The history of harm visited on my ancestors informs my worry. I am disturbed by individuals like Ms. Singer using crushing power to try and dictate public policy decisions based on their own intolerance for nonspeaking high support needs adults. BIPOC parents and our nonspeaking autistic offspring are powerless witnesses in a world where parents and guardians with financial power and racial privilege are the primary voices heard in public policy spaces. The money, networks of power, and platforms given to these adults cannot be matched by voices like ours.
How can my son and I fight for his right to exist as an autistic nonspeaking adult free from the conscription to the faux 'profound autism' label? The current definition of Autism Spectrum Disorder in the DSM V is all-inclusive and enough. And yet, a concerted effort to drive the term 'profound autism' into existence to segregate my son from his peers who use verbal speech is popping up in OpEds anywhere these influential parents' networks reach.
My distress won't ever be heard in white-dominant media spaces. But I keep coming back to Samuel Cartwright and how his invention of the term Drapetomania codified the pretext for slave catchers to use mental health as an excuse to harm ancestors who wished to be free and live in the same society as any other person. Scientific racism in research, medicine, and psychiatry has done irreparable harm to BIPOC Americans for years. There has not been a complete reckoning of the damage done to disabled Americans for decades, either. To see this continuing war for control of public policy through the creation of labels meant to push for reductions in community-based, humane treatments of nonspeaking autistics is heartbreaking.
Each time one of these OpEds appears, remember the scientific racism of Benjamin Rush and his student Samuel Cartwright. Labels matter; the wrong label, used as leverage to strip nonspeaking autistics of autonomy and humane approaches to living, only drags autism public policy back into the abusive world of institutionalization, seclusion, and harm. Don't just look at the attempts to increasingly impose the term profound autism. Ask yourselves why these attempts are happening. Save your offspring and mine. And help all their communication to be accessible, autonomous, and heard.
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