Autism Awareness, Acceptance, and Cure Stories
Because of Autism Awareness/Acceptance Month/Day people are becoming very aware of what amounts to a large discussion both inside and outside of the autism community. A lot of people have been stepping into this territory and are confused by what they see (e.g., “why the talk about genocide?”), in part because they are not familiar with the social model of disability, in part because they simply don’t understand autism.
In this my goal is not to talk through the nuances of the politics around autism cures, but rather to provide some context on the environment in which that discussion is happening.
Important Notes
Here are some notes on neurodivergence, autism, and cure decision. I am going to use a lot of references that if you are not used to these discussions you are not going to be familiar with. I am going to provide resources on many of them. I ask that if you are going to ask questions or make a comment you familiarize yourself with these resources first. I will sometimes help educate people on this when I have the spoons, but only if you take the time to educate yourself on the baseline first (and more likely if you are a friend).
I am also going to say that these represent my views on it as a autistic person, speaking largely about a generalized version of “the autistic experience.” With that said, as the saying goes: If you meet an autistic person, you have met one person with autism. It is an incredibly varied condition, existing in what could be described more as a ballpark than a spectrum.
Baseline Knowledge
“…in reality, if there really were a kingdom of the blind, the one eyed man would be disabled.” (Peter Flom)
First, we need to discuss the difference between impairment and disability. Impairment is a hinderance from baseline. Disability is about interaction with society. A person who is dyslexic in a society where everyone is illiterate is not really all that disabled. A person who lives in the Kingdom of the Blind and yet has a seeing eye is not impaired (they are, if anything, more “functional”) but they are still disabled (because everything down to the signs and the streets are designed for people who cannot see).
Second, cure decision is incredibly personal. People who have been supposedly successfully “treated” (using one of the more experimental therapies that only usually address one subset or type, e.g., cord blood therapies that are not without criticism or TMS) find that their personality shifts in radical ways. They find they have to restructure their entire lives and remap their understanding of the world. Their accounts, even when they end on a semi-positive note, read like Flowers for Algernon.
Management around challenges is one thing — and still very personal, complicated, and not without its controversies — a cure decision is another and infinitely more so.
This is made more complex, further, by how little we’re understood and how often we are misdiagnosed. Especially if we are at all variant (which can include variances such as “being a woman” and/or not talking to an actual specialist). We get told things like “you don’t look autistic” or have our concerns minimized or dismissed with some regularity.
Third, cure decision and curebie stories are all over the place and we get bombarded by them daily along with the very real world of people who would be looking to make permanent neurological alterations to us, categorically, before we are of an age where we could opt into such a thing for ourselves.
Ask anyone who had their parents put them into conversion therapy, christian therapy, or any of the other destructive patterns what sort of stewards parents tend to make for this sort of decision around variance in their children.
We are bombarded by suggestions for “cures” that have absolutely zero grounding in science. Some of these are mild amusements (I can cure it by giving up gluten), some of these are bizarre but largely harmless (I can help mitigate the symptoms with colored lenses), some of these are downright harmful on a sociological level (vaccines cause autism), others are destructive and often done with neither evidence nor informed consent (bleach enemas).
So it is important to understand, if you are allistic (not autistic), that this is the environment that we — the autistic — live in every day.
Allistic people win awards for writing these stories about us and our decisions without actually being autistic, which can be problematic even when they are still very well done.
Fourth, tied into the above, it is important to understand that we are not included in conversations that are central to our autonomy and our ability to make informed choices.
For example, one of the big debates in the use of person-first language is between non-disabled disability advocates and those who are actually disabled. Disability advocates are things like parent organizations, and as a general rule those are some of the least likely organizations to actually respect our choices, framing, or even our very existence around our disabilities, even (especially) after we turn 18.
“It’s surprisingly painful to be told that you don’t have a problem that causes you trouble every single day.” (What Does It Mean to ‘Look Autistic?’ Cont’d)
Organizations such as Autism Speaks are particularly known for this, but it is everywhere. We are seldom allowed to speak for ourselves and widely misunderstood, with articles being published about us with phrases such as “whose eyes are not windows to their souls but black mirrors.”
We have our own labels rejected because they make others uncomfortable.
We find that our experiences are either coopted by others to fit their own goals (and not ours), or minimized when they don’t fit the narrative that the organization is pushing.
Fifth, “autism” is used as a boogeyman by organizations such as Autism Speaks. They drum up fear around how “your child may be autistic” (with scary music playing), stories of particular severe forms are propagated among parents, anti-vaccine organizations use autism as a rallying cry and say that catching life threatening illnesses (read as: risking death, paralysis, and/or brain damage) is a better outcome than being autistic.
It is used as an example of “people who should not own a gun.”
Not to mention the number of times it is treated with fear in adults and we’re targeted for violence or narratives of “the killer may be autistic.”
What This Comes Down To
So that’s the backdrop of a small sliver of what you need to understand before you start treading into the question of “why do autistics react so badly to these discussions about cures? I keep hearing them talk about genocide [and such] when all that was suggested is the idea that parents could… [do something about it].”
To understand that reaction, you have to understand the environment. In a real way it is like asking someone in a disadvantaged group “why are you angry” or saying “well, actually, not ALL men…” The disadvantaged are reacting to the environment they live in.
On the other side, there are distinct areas where parts of it just look like personality or talent differences, to quote:
His view is shared by those who are involved in researching autism. “I do think there is a benefit in trying to help people with autism-spectrum conditions with areas of difficulty such as emotion recognition,” says Professor Simon Baron-Cohen, the director of the Autism Research Centre in Cambridge. “Nobody would dispute the place for interventions that alleviate areas of difficulty, while leaving the areas of strength untouched. But to talk about a ‘cure for autism’ is a sledge-hammer approach and the fear would be that in the process of alleviating the areas of difficulty, the qualities that are special — such as the remarkable attention to detail, and the ability to concentrate for long periods on a small topic in depth — would be lost. Autism is both a disability and a difference. We need to find ways of alleviating the disability while respecting and valuing the difference.”
What the #AutismAcceptance thing is about, in a nutshell, is that we are tired of all of the above. We are tired of being treated as if autism is a fate worse than death. Tired of being treated as if we are dangerous. Tired of being denied support (with the words “high functioning”) or agency (with the words “low functioning”). We believe that what we want — acceptance, reasonable accommodation for our differences — is a reasonable thing to ask of society. We want to think that we are valued for who we are, differences and all.
To quote Gareth Nelson from the same article:
“I don’t want to get to be an old man, and know that there will be no more people like me being born.”
There are more issues, there are massive intersectional elements, there are other considerations, and there’s significant disagreement within the community on what is or is not appropriate… but that’s the starting point of understanding the context in which that discussion is taking place.
Autistic Voices
There are many, many autistic voices out there that talk about these issues and more. Here are just a few active ones.
