Actually, I Do Let Autism Define Me: Identity-First Language

Disclaimer: Some peoples’ initial impression may be that I’m saying Autism is not a disability and that it’s all easy. This is untrue. I don’t believe autism is a disorder, but I do consider it a disability. This is because I see disability under the social model. That is: a social construct caused by society being incompatible with the brains and bodies of certain individuals. Society can be disabling toward Autistic people, but it has been demonstrated many times that when we tweak it a bit to make it more enabling, Autistics thrive. We are skilled, and we deserve to be given the opportunity to grow, develop, and leave a mark on the world however we choose. The medical model of disability limits us, and disempowers us by suggesting we are broken or incomplete, and in need of fixing. This is not the answer; to help Autistic people we need to break this pattern.

 

[Image description: A young boy leaning against a wall with yellow and white text, “if all you see is autism, autism, autism, you will miss loving, smart, funny, sweet, insightful, unconditional, empathetic, uniquely observant, impeccably talented, ever so intelligent, and capable of creating extraordinary change in the world”.]

 

The above image is one I have seen shared around my news feed on social media. One of those generic, feel-good types of messages you hear about Autistic people, the kind that some of us refer to as “inspiration porn”. I have a serious problem with the message in this picture, and am extremely vocal about it. As though autism is somehow mutually exclusive with all the traits denoted. I think whoever edited that photo didn’t stop to think that maybe, just maybe, all those positive traits are a direct result of being Autistic?

For anyone who has been around Autistic communities, or is Autistic themselves, one of the first things they may notice is the different ways in which we are referred to. Some will  say, “has autism/person with autism/people with autism”, whilst others will say, “is [an] Autistic/Autistic person/Autistics”.

These descriptions cover two broad categories of language: identity-first language, and “person-first” language. In my blog (and outside of it), I pretty much entirely refer to myself as “Autistic”, rather than a “person with autism”. Some people wonder why I choose to “label” myself. These people have probably been taught most of their lives that person-first language is the correct way, and that anything otherwise is inherently disrespectful. This could not be further from the truth. I and many other Autistic advocates, particularly those who support the neurodiversity paradigm, use identify-first language. In fact, I, for one, see person-first language as disrespectful, demeaning, and ableist.

Something that I see a lot of well-meaning non-autistic folks say to their Autistic children, siblings, relatives, or friends, is “you are more than autism”, or, “you are not autism, you are still yourself”, or, “don’t let autism define who you are”. Many of these same people insist on using person-first language, because they deem it somehow superior.

The above quotations, and person-first language alike, are based on the same assumptions:

1. That Autism can and should be separated from the individual.
2. That Autism is shameful, and a bad thing: a disease, illness, disorder, something undesirable that should be shunned.

Despite that these people mean well, and want the best for their children, these quotes, and “person-first language” are ultimately harmful and damaging: damaging to the child’s self-esteem, giving them the pressure to be “more than autism”, whatever that even means. It is also damaging to the rest of the Autistic community, implying that autism makes a person less. “Person-first language” was not created by Autistics to begin with.

The first claim, that Autism can be separated from the individual, is complete nonsense. Autism is the way our brains are wired. Autism shapes our perception, the way we see the world, as well as how we think and feel. A lot who talk about “curing” autism seem to forget that doing so would completely change who we are as human beings. We would no longer be the same person. Autism is SUCH an integral part of who we are, and to take it away, to take our minds and how we think away, would make us lose our personhood. Back when I used to hate who I was (again, because of people sending a subliminal message that autism is a bad thing), I thought back on what my life would be like if I was non-autistic. I realized that I would not be the same person at all. Sure, I may not have had some of the bad experiences I’ve had, but I would also not love the things I love, believe the things I believe, and I also would not have many of the skills and talents I possess; at least not to the same level. I would be a completely different, foreign person. I wouldn’t even recognize myself.

Now, for the second concept: the idea that autism is a bad thing. Shameful. A disease/disorder that should be cured. Some people actually justify person-first language by saying, “well, you wouldn’t call a person with cancer a cancerous person”, not realizing how offensive and wrong it is to compare autism to cancer(or any other illness). This, of course, is untrue as well. Autism is not a disorder, nor a disease, nor shameful – while it has its’ challenges (like every other neurotype, including neurotypicality), Autistic brains are not inherently damaged or less-than. Granted, most academic papers now call it such, but there was a time when scientific and academic literature was all racist; that does not validate or justify racism. Just half a century ago, homosexuality was also considered a disorder(and in some countries and right-wing extremist groups, still is), until gay rights activists started to shift the paradigm.

Similarly, today Autistic activists are shifting the paradigm from the pathology paradigm to the neurodiversity worldview. Some day, Autism will (hopefully) be declassified as a disorder, and recognized as a valid form of diversity; neurological diversity.

I am Indian. I do not call myself a “person with Indianism”, because being from India is a big part of my identity; my ethnicity.  I also call myself Canadian, on that matter, since that is where I’ve lived most of my life, and it is also a part of my identity, in the form of nationality. Similarly, you wouldn’t refer to a gay person as a “person with homosexuality”; their sexual orientation is also a part of their identity. Similarly, autism, my brain, my neurology, is a BIG part of my identity. If you wouldn’t talk a certain way about another minority, don’t talk that way about neurological minorities, like autism.

For most of my childhood, I passed as neurotypical. I was taught that autism is shameful. I was told, “don’t let your autism define you”. I was under constant pressure to hide who I really was. To suppress a part of myself that I believed was bad. And ultimately, this did nothing to help me. It only hurt me.

As many Autistic individuals have experienced, when I stopped hiding myself – when I no longer concealed the fact that I’m Autistic, and when I embraced that part of my identity, that is when I suddenly became a lot more confident in my abilities. I started to like myself, recognizing my strengths, while working on my shortcomings.

If an Autistic person asks me to use person-first language, I will respect their wishes and do so for them. However, we shouldn’t be teaching Autistic kids to distance themselves from their autism. We shouldn’t be telling them they’re “more than autism”. We should be telling them that they’re Autistic, and teach them to be proud of their identity and neurology, and celebrate who they are.