Gatekeepers are everywhere—even Autistics gate-keep other Autistics.
We spend WAY too much time worrying over the language other people use to describe their experiences of Autism.
When I was first diagnosed, I cared more about the language people used to describe Autism in my spaces. These days I care much less about how other people express their experiences (because I know language evolves and people are all learning and growing).
If we chase people away whose only crime is not knowing what we know from our community, we are chopping our people off like baby plants at the root (before they can learn to blossom and grow).
If someone says their Autism is a disability to them, fine. If someone says their Autism is NOT a disability, that’s fine too. Same thing if someone chooses to call themselves a “person with autism” – even though you all know my personal feelings on that, those feelings are my PERSONAL feelings. Just like the person who chooses to call themselves a “person with autism,” they will likely have very strong PERSONAL feelings about why they describe themselves that way.
It’s none of my business how people describe themselves (though I have strong opinions on the language I personally use when talking about the Autistic experience, and I may try to gently educate someone if I notice they are using harmful language).
I’ve shared my preferences in the past and why I have those preferences and then watched, in horror, as my content, filled with my perspective, has been used to invalidate someone else’s experiences (which was never my intent because I make content to educate).
It DOES matter how we describe certain experiences, especially when representing entire groups of people.
If we describe groups of people using primarily negative language, society will view that group of people in a predominantly negative way. If we describe groups of people using positive language, society will view that group more favorably.
Certain language does cause harm, contributing to the stigmatization of marginalized groups, so I am cautious about how I describe Autism and the Autistic experience on my platforms (because I know words have power and carry the potential for harm).
Still, most Autistic People aren’t trying to maintain a platform that reaches millions of people every month and don’t have the same responsibility for harm reduction that I do.
Most Autistic People are just living their lives, trying to survive a world that isn’t built for them.
Many Autistics (especially those who are isolated or without internet access) haven’t had the opportunity to learn what I’ve learned over the years of being openly Autistic, surrounded by an online and in-person Autistic Community. Many Autistics have never heard of NeuroDiversity and ONLY know the medical model and the pain, suffering, and stigma associated with Autism (because they’ve never been exposed to the idea of Autistic strengths or Autistics who can thrive in life).
Because of this, I try to be gentle with people these days, more delicate than I used to be when I didn’t understand these nuances.
On Twitter, there was an interesting discussion I dropped in on recently talking about the medical model of Autism and how, technically (under the medical model), to be defined as an Autistic Person in a medical context, you must be someone whose Autistic traits “cause clinically significant impairment in social, occupational, or other important areas of current functioning.”
Due to the language above, this person suggested if you’re not struggling, you might not be Autistic in a medical context (regardless if you were diagnosed previously and met the criteria). “Are they Autistic?” they asked.
Receiving accommodations and support in life can reduce (and may even eliminate) many of our struggles.
The support we receive or life changes we make can be the difference between success and failure for many of us.
When our needs are met, we may be able to go from barely surviving to thriving.
A suggestion was made that those who aren’t currently struggling “might not be Autistic anymore” (even if we are thriving because we are accommodating ourselves like Autistic People and would fall apart without those accommodations).
The tweeter also felt that it would be good for Autistics who are “not currently struggling”or don’t have visible struggles (or are thriving in life without “specialist support”) to “give up our Autism diagnosis” and stop calling ourselves Autistic once we aren’t struggling anymore or if we don’t require “specialist support”.
It was suggested by that if we’re not currently struggling we should call ourselves NeuroDivergent, instead of “Autistic” and I refuse.
Autism is a lifelong diagnosis. Even if we learn to emulate non-Autistics successfully, we’re still Autistic underneath.
I don’t understand how “giving up” an Autism diagnosis would help anyone except those who sell “Autism cures”.
The myth that one can “grow out of Autism” or “become less Autistic” over time is the myth that has historically been used to sell ABA and other quack “cures” for Autism.
Remember when parents had entire Facebook groups dedicated to giving their kids BLEACH to “cure” Autism? I do, because it wasn’t that long ago.
NOTE: Parents are still bleaching their Autistic kids, trying to eliminate parasites that don’t exist or cause Autism (just not out in the open as they used to).
Countless Autistic kids have been tortured by people who want them to be non-autistic because parents (who are often preyed upon by people wanting to sell them something to “normalize” an Autistic Person) hold on to false hope their kids will stop being Autistic one day or will become “less Autistic” (instead of learning to appreciate the Autistic kid they have now).
It all comes full circle. Many of these parents are scared because the doctors only tell them bad things.
When the parents have no hope, the kids suffer – all because we don’t spend enough time talking about Autistic joy, strengths, and successes enough. There are little to no positive outcomes presented to many of these parents, which can become a self-fulfilling prophecy that impacts not only the Autistic child but everyone in that family.
We seldom see examples of Autistics who are thriving (and when Autistics ARE thriving, people often question if they are “really Autistic” because people are only used to seeing Autistics who struggle).
I hope one day we expand the criteria to include positive Autism traits vs. only negative ones and struggle as it is now.
Some people are worried that defining Autism in a more balanced way (and including Autistics who are thriving in the definition of Autism) will cause those who currently have (or want) services to lose them because people “won’t take autism seriously anymore” if people see too many Autistics who “don’t struggle” (or who hide their struggles well).
They want us to “give up” our official autism diagnosis to help others “who DO need support,” but they can’t see that neither group is taking anything away from the other.
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