[Image ID: Screenshots from The Autism Cafe on Instagram. Black backgrounds with white text.
theautismcafe: There's been a huge increase in people trying to erase severe autism.
"Severe autism isn't real."
"We're all equally autistic."
As someone diagnosed with Level 1 ASD who's raising a child with Level 3 (severe) ASD, I can tell you that these statements are far from the truth.
(1) There's a significant difference between an autistic person who has the luxury of being able to advocate for themselves on social media, me, and an autistic person who can't communicate beyond basic needs, who can't keep themself safe, and who needs 24/7 care.
(2) Some justify the fact that severe autism isn't real by saying that the spectrum cannot be described by such a linear scale. The idea is, the spectrum does not simply span from mild to severe. Many of them prefer "the autism wheel," where many autistic attributes and challenges are represented as equal pieces of a pie, with severity represented by how far from the center each section extends.
While this is a fine, albeit self- reported way of visualizing a range of characteristics, sort of like how reading the results page of a testing report would be, it's a solution to a different problem. Someone with Level 3, severe autism would have a fully filled-in wheel in most, if not every section, whereas someone with Level 1 autism would have a lower intensity range of results.
Showing someone or describing a graph every time you want to describe their autism is longwinded and simply not feasible. The fact of the matter is, regardless of where one might land across these different measurements, the intensity of one's autism and the level of outside support they require to exist in this world needs terminology to be communicated. This is what we're trying to describe. It's not an attempt to reduce an entire person to a word like "severe," but attempting to banish these words ignores the need for a shorthand for what most people are trying to communicate - it's a highly sensitive, overly complex, and unrealistic effort that misses the point.
(3)Another argument, that severity levels vary from day to day, similarly misses the purpose of these terms, and is largely untrue.
Someone with level 3 autism doesn't have days when they can suddenly wipe their own butt, answer questions, and safely keep themselves from wandering into traffic. They're level 3 every single day. When I hear autistics say, "I go nonverbal" in an attempt to say that they understand my son's autism, I point out how the fact that they've just said that to me means that no, they don't, that it's fundamentally not the same, even if they relate to some characteristics in some ways. Charlie doesn't come out of it and advocate for himself or insult parents of severely autistic children on social media.
(4)If people keep pushing the "severe autism isn't real" narrative, services and support for individuals who need it the most will become even harder to get. Many autistic adults require extra care for their entire life and sometimes even live in group homes. If all the general public sees are autistics with lower support needs "stim dancing" on social media, it's harder to convey why some autistics need much more support, and showing them a wheel graph isn't the answer.
(5) Level 3 autism is in the DSM-V. It's a medical diagnosis. Like it or not, severity levels 1, 2, and 3 are specified there in black and white, ranging respectively from "requiring support," to "requiring substantial support," to "requiring very substantial support." And the "profound autism" designation is recognized by The Lancet. "Severe" isn't a dirty word. It's a way to accurately and certainly does not preclude one from following up with a further description of the person in any way they might desire. It's a free country.
Call it severe, profound, level 3, or high-support- needs, but for the sake of all severely autistic people who need support more than anyone reading this, more than those who scream the loudest on social media, stop trying to erase it.
Important note: The blog this is taken from does support Autism Speaks. The information is still important, but please be aware.
Thank you to @let-me-dream-with-the-stars for pointing this out.
