I strongly believe that the vast majority of people truly are good and would not intentionally cause harm – but I also know that good people can do great harm when they are not aware of how their subconscious beliefs are impacting communities around them.
It is, therefore, sometimes necessary to wake people up to their subconscious, internalized prejudice to make life better for those who are the recipients of that prejudice.
This may be uncomfortable. But as uncomfortable as it makes you to become aware of internalized prejudice you didn’t even realize you had, just remember that it feels much worse to actually be the minority who the prejudice is against, and try to sit with your own discomfort long enough to challenge your own beliefs and evaluate whether or not there’s a more compassionate way forward.
So now we get to it, and here it is: you can’t be a passive advocate for minorities.
Too many people walk around thinking they’re an ally to autistic people, for instance, because they don’t personally have a problem with us and aren’t out committing hate crimes against us or actively trying to harm us, without realizing that inaction isn’t action, and that there are several ways they are still harming the autistic community.
It’s not enough to say you’re an ally; have to prove it through your actions.
And when it comes to autistic people, if you’re not listening to autistic people, if you’re not deferring to our lived experience and expertise, and especially if you’re talking over us, correcting us, and telling us what language we should use to describe ourselves, you are perpetuating oppression against us and are in no way an ally, even if on a personal level you’re thinking, “I have no problem with autistic people!”
If you’re doing any of the above, you are part of the problem, albeit most likely unknowingly and unintentionally. In doing the above you are contributing to the continuation of a status quo which harms autistic people. How could you ever be a true autistic ally if you’re, knowingly or unknowingly, keeping systems in place which harm us?
This is especially true regarding people who react to people identifying as autistic with “who cares about labels? Labels limit you!”
It seems like an innocuous, perhaps even compassionate thing to say. But as I will explain, it is literally tantamount to admitting prejudice. And no, that’s no exaggeration. Bear with me as I explain why.
An autistic label does not limit us. The society in which we, autistic people, find ourselves, the society that literally punishes our natural tendencies, the society that has little to no understanding of autistic neurobiology and little to no compassion for us, the society that demands we abandon virtually all of our needs and natural ways of being to make them more comfortable, limits us.
Autism, contrary to what is unfortunately still popular belief, is not a disease or a even a disorder. Scientific research is bearing this point out again and again. I can understand why someone would object to someone identifying a personal label with a transient disease, but autism is, as stated, indeed not a disease and is simply the description of a distinct way of developing and being human. We are still human, but we are differently human.
We are, simply, humans who have different sensory experiences and needs, different communication experiences and needs, different perspectives and ways of thinking, different physical mannerisms.
And yet, autism, the state of being autistic, IS a disability. This is where people get really confused. Isn’t a disability “bad”?
But here’s the catch – autistic people wouldn’t be disabled in a society which adequately accommodated us. We are living in a society which is entirely incompatible to our strengths, weaknesses and needs.
“What about “severely” autistic people?” People cry. “How can you say they’re not diseased or disordered when you see how much they struggle?”
First of all, there are no “severely autistic” people. Are there “severely” non-autistic people? No.
Secondly, think what people are referring to is autistic people who live with intellectual disabilities and need round the clock care, but, and this may come as a surprise to people, THERE ARE NON-AUTISTIC PEOPLE WHO ARE INTELLECTUALLY DISABLED, TOO. It is not a purely autistic phenomenon.
I think people are also referring to autistic people who do not speak and need assistive devices to communicate, and assume that if a person does not speak they are automatically low IQ/intellectually disabled, which just is not true. Sometimes autistic people who do not speak are also intellectually disabled, sometimes they are not.
The ability to speak spoken words does not guarantee intelligence just as the inability to do so does not guarantee intellectual disability. And if society perfectly accommodated non-speaking autistics? If sign language was as universal as spoken language? If assistive communication devices were commonplace? It wouldn’t then be a disability, rather just a different way of communicating.
It’s only a “disability” because the society refuses to accommodate it and insists that one type of communication (spoken) is “superior” to all others simply because it is the most common.
And lastly on this point, I think others conflate conditions which tend to occur in higher incidence in the autistic population with autism, itself. However, research is emerging which demonstrates that a lot of these “comorbidities” have more to do with high levels of chronic stress and its impact on the nervous system, and I would argue those high levels of chronic stress exist because we are not accommodated. In other words, I don’t think autistic people are just inherently more prone to chronic illnesses. I think the chronic illnesses are symptoms of a much larger problem: prejudice against autistic neurology and the refusal of society to accept and accommodate us as we are. Our very mode of human existence is pathologized as a way to avoid having to accept us into the folds of the human race.
And it bothers me that people are more bothered by how we (autistic people) choose to self-identify than they are about how generally non-accepting and non-accommodating the society is towards autistic people.
If everyone who put all of that effort into trying to convince autistic people not to identify as autistic people (but to identify as “person with autism”) into, instead, dismantling their own ignorance surrounding autism and working on becoming more accepting towards autistic people, maybe autistic people wouldn’t be sequestering ourselves away from the world, which is, in reality, what limits us.
A society that is so far from accommodating as to be hostile to us, a society in which our only options are to painfully conform or to withdraw ourselves, is what limits us. In a more accepting world, we’d be better able to integrate. But that is not yet the world we live in.
Non-autistic people don’t realize the immense privilege they are speaking from when they casually tell autistic people that the only reason we are suffering is because we are “limiting” ourselves with a label and we should just “live our lives” because to that non-autistic person, they can just “live their life.”
To that non-autistic person, the society they find themselves in is accepting of their neurotype and their sensory and operational needs, the society they find themselves in doesn’t present them with barriers at every turn, the society they find themselves in doesn’t socially ostracize or punish their natural ways of being.
It’s like this – imagine there’s a type of jellyfish that is harmless to most people, but painfully stings and incapacitates some people.
Someone who isn’t affected by the jellyfish sting says to someone who is affected by the jellyfish sting, “you’re only suffering because you’re identifying as someone who is affected by jellyfish stings. Stop limiting yourself with a label and just get in the water and swim already!!!”
Of course, the person who is affected by jellyfish stings can’t just “get in the water and swim already” because when they do, they get stung and incapacitated. What’s more, they get stung and incapacitated WHETHER OR NOT they label themselves as someone who is affected by jellyfish stings.
But the person who is not affected by jellyfish stings has never had the experience of being stung and incapacitated while swimming and so cannot imagine what that’s like, so they wrongfully attribute the person’s struggles to their “label.”
It is the exact same thing when a non-autistic person says to an autistic person that the only reason we are struggling is because we are “limiting” ourselves with a label.
We’re not. Flat out, the labels are not what is limiting us.
Do people sometimes put themselves in so many boxes as to lose touch with their unique authenticity and their strengths? Absolutely. But that is not the same thing as someone identifying themselves as autistic.
The autistic label isn’t some self-fulfilling prophecy, some apathetic resignation to a belief which disempowers someone. The label is an accurate descriptor for a type of person whose strengths, weaknesses and needs are literally at odds with that of the society around them, and whether or not the label is applied, they still encounter barriers and road blocks and challenges while trying to navigate such an incompatible world.
We are accurately describing the type of human brain and nervous system we are operating with, which in and of itself isn’t derogatory. The society finds our natural way of being derogatory because it doesn’t fit with societal expectations.
So when I say I am autistic, I am simply stating a fact about myself no different than if I say I have brown eyes. What society hears is filtered through their own prejudice and preconceived ideas: “I am weird and broken” is what they seem to hear when I identify as autistic, because to them, autism equals “weird” and “broken.”
They then gasp and say, “oh, no, don’t say that about yourself! Don’t let that label limit you!” Because they see that label as limiting. They see autism as something derogatory.
Understand that autistic people don’t see it as limiting or derogatory, and that the people who do usually see it as limiting/derogatory because they, themselves, have some severely misinformed, misguided or outright fucked up ideas of what autism really is.
It’s not just beauty that is in the eye of the beholder, it is prejudice, too.
So our struggles, which are a direct result of society refusing to accommodate us, are dismissed and we’re told all that’s wrong with us is that we are labeling ourselves, rather than society taking a hard look at itself and realizing that maybe it is thoroughly inaccessible and actively hostile to autistic people. It’s easier to blame us for not fitting in, in other words, than it is to change to be more understanding and accommodating.
So please, if you truly want to be an ally to the autistic community, step #1 is to never tell an autistic person what language to use to identify to themselves.
You may think you are being compassionate when in reality you’re just perpetuating the myth that autism is a) a disease b) something bad or shameful and c) something separate from the person. You may not know how much you don’t know.
You may think, as too many do, that autism is some awful disease afflicting an otherwise healthy “normal” person, when in reality, the only “disease” is the ignorance and prejudice against autistic people which prevents people from even seeing us as people!
Please redirect all the energy you might otherwise put into policing someone’s self-descriptors into dismantling your own internalized ableism and ignorance about autism and neurodivergence as a whole.
Learn from autistic people. Subscribe to our channels, read our books, listen to our podcasts. Be willing to believe that what we are saying about our experience is true even though it does not reflect your own experience.
Please realize you’re lucky, and born with immense privilege, to be born as a member of the majority neurotype but your insistence that the minority doesn’t exist keeps us locked in the very prison you criticize us for being in (by criticizing us for not being social enough, spending too much time alone in our homes and our rooms, on screens, etc.)
Realize we are coping the best we can in a world that refuses, just absolutely refuses, to hear us, understand us or accept us.
If you want us to come out of our rooms and our homes and leave our screens and join you in the world, do your part to make the world less hostile for us. That is the most valuable work you could ever, ever do as an ally.
So many of us in the autistic community are already doing immense amounts of emotional labor for non-autistic people by creating lots and lots and lots of educational content, from our unique perspectives, on what it means to be autistic. We’re already doing the heavy lifting.
All you, a non-autistic person, have to do is watch it, think about it, and maybe change how you interact with autistic people a bit. The weight of this process has been on us, autistic people, to advocate for ourselves. The least the neurotypical society we find ourselves in can do is take the time to listen to what we write and say and take it under advisement.
Autism isn’t a dirty word. Autistic isn’t a dirty word. Neither are derogatory.
If you feel that they are, you need to inspect yourself for internalized ableism, prejudice, and misinformation. If you feel that they are, take it as an indication that there’s more you can, and should, learn about autism and autistic people. And you should learn it from autistic people.
Yo Samdy Sam: https://youtube.com/c/YoSamdySam
Amythest Schaber: https://youtube.com/c/neurowonderful
Indy Andy: https://youtube.com/c/IndieAndy
Purple Ella: https://youtube.com/c/PurpleElla
Aspergers from the Inside: https://youtube.com/c/AspergersfromtheInside
Stephanie Bethany: https://youtube.com/c/StephanieBethany
And this great video listing THIRTY great autistic self-advocates: https://youtu.be/TwyMybGVF9M
And this great video of a talk given by an autistic autism researcher and PhD describing how autistic people are actively DISABLED (as a verb, not noun) by the society around us who refuses to accommodate us, based on scientific research: https://youtu.be/A1AUdaH-EPM
And this great video from yet another autistic autism researcher and PhD going over autistic burnout and scientific studies, autistic burnout being the psychological and psychological consequence of an autistic person trying to conform to non-autistic expectations without accommodations: https://youtu.be/SFixaliygnA
If you want to be a true ally, step #1 is setting aside your preconceived ideas and listening to what #ActuallyAutistic voices have to say, and honoring it.