Why autism should not be called a disability (for the time being)
”What’s wrong with seeing #Autism as a disability?” This is a good and common question! Many people, autists included, do identify as disabled and part of disabled community. They are not wrong, either -for one thing, autism traits and environments in which autistic people live vary a lot and it is only natural for lived experience to reflect that. Others, including myself, think that this issue is way more complicated and see that autism is quite often called as disability in a way that weaponizes the concept and makes it yet another tool of discrimination against autistic people. Let’s take a closer look why it might be wise to refrain from calling autism a disability for now and instead advocate for recognition of neurominority as a distinct minority (prevalence is certainly not an issue, as it seems that estimations about size of autistic population climb steadily as more research becomes available).
- Disabled people have no legal protection against research that aims at ”curing” them. But autism is also an identity. We don’t want to be ”cured” (=brainwashed) into being neurotypical. There is no poor little NT person trapped under my autism. There is only my autistic self who, by the way, is way more lovely than the poor copy of neurotypical person my mask ever was. Only ”cure” from being yourself is death. Resisting eugenistic research is a major struggle for autistic people. Let me make this very clear: nobody has asked autistic people, if we want to go extinct- nobility of that goal is a neurotypical fiction. I want research that aims at destroying my kind to be banned, not embraced by society and seen as an ethically praiseworthy career option. Society has a blind spot when it comes to eugenics against autistic people, one that needs to be addressed yesterday. It is not *us* who have decided that it would be better if autistic people could be prevented from being born or who believe that we are burdens whose life is not worth living. That is the view of people who hate us and difference we represent, and existence of eugenistic research is proof that they have managed to spread their hate to frightening extent in society.
- Because ”disabled” calls excessive focus into one’s personal traits and is strongly associated with belief that some sort of therapy or rehabilitation or coaching is what would help autists most, because it might make us fit in neurotypical molds ”better”. We don’t need that. We don’t need our traits to be dissected, measured and studied and evaluated according to how likeable neurotypical people find them as if we were exotic insects instead of complete human beings. We are far more than sum of our autistic traits and also expression of our autistic traits varies a lot according to situation and our environment. We need discrimination, dehumanization and exotization to end, full human rights, equity, understanding and reasonable accommodation. We do NOT need to be ”helped” to be like neurotypicals. Minority status alone is sufficient explanation for support needs.
- Because neurominority is not only targeted by ableism but also by nentism, prejudice against neurodivergent traits that have nothing to do with functioning (eg. different way of socializing and body language, different life choices etc.) In fact, a great deal of prejudice against autistic people is nentistic, not ableist, in nature. Yes, autistic people are ALSO targeted by ableism (just like immigrants may be targeted by both racism and prejudice against their religion), but ableism does not cover nentism. If nentism is not recognized, part of prejudice against us goes unseen. While few people openly admit to hating autistic, individual autistic traits are a whole different matter and can provide endless opportunities for bullies -and if we seek help, we easily get told “Well, couldn’t you just be a bit more normal and more like others?”.
- Because the most common neurotype is not a standard or fit to use as a measuring tool for everyone else. Many autistic traits are ”disabilities” only when compared against neurotypicality and found to be different. Even existing diagnosis criteria is ridden by value judgments and looks much more like list of traits that neurotypical people don’t like than what autistic people feel are most important parts of autistic lived experience.
- Because ”disabled” label hides autistic people who still manage to survive among neurotypical people without accommodation or support, and their life is that much more difficult. I should know, I used to be one of them. While being neurotypical-assumed protects from worst forms of discrimination, it backfires hard in terms of physical and mental health. Had I understood myself and known how to look after myself properly while I mistakenly believed that I was “just mildly autistic”, I would have avoided a world of suffering, including autistic burnout. Had I been told that there is no such thing as mild autism and that no matter how profoundly traits that make me struggle manifest right now, I need to embrace my autistic self, support her and treat her the way citizens of Takiwatanga need to be treated: with understanding, great kindness and love. It is heartbreaking to think of the huge part of the autistic whanau (soul tribe) that lives out their lives without knowing that they are autistic, nobody seeing and caring about their struggles and pain because they “function” without outside support. There is so much more to life than surviving and performing and meeting outside standards. And first line of support is not what social services or health care system or a family can provide. It is how you treat yourself, life choices you make, and whether or not you are able to see yourself as part of Takiwatanga, your true homeworld and act accordingly. It is perfectly possible for a person to be “functioning” well enough to not need outside help. They can even be successful by outward standards. Still, they are forced to struggle more than they should and denied full understanding of their self and Takiwatanga. Being able to (self)identify, find friends who can truly understand them and access advice on how to make choices that support and care for autistic neurotype would benefit them greatly. In this sense, ”disability” comes very close to functioning labels, which are totally wrong way to make sense of autism.
- Because there basically are no untraumatized, flourishing autistic adults around. So we don’t know how disabling autism would be in a 100% supportive and equal environment = we do not know if autism *in itself* is disabling or whether our apparent disability stems from things like prejudice and trauma. Calling those autism traits hides their origin. What can be a crueler form of oppression than justify othering, stigmatizing and patronizing by signs of suffering and traumas that have developed as responses to oppression?
In a perfect world, autism may or may not be disabling. Right now, we lack information necessary to know that…so any conclusions are premature. In order to know, we need far deeper understanding of autism than what we have at this time when we are just emerging from decades of medicalization. Getting into epistemic position that enables such understanding requires making huge improvements in quality of autistic lives.
While Kaiao advocates for adoption of neurominority view, it remains committed to trying to bring out diversity of views in autistic community. Active participation in autistic community discussions ensures that Kaiao’s expertise is current and informed of most recent developments both in autism research and autistic community.