Asperger’s / autism and identity

Autism isn’t something I have; it’s something I am.

Put another way, I’m not “a person with Asperger’s/autism; I am an autistic/Aspergian person.

Those statements right there form the crux of “identity-first language”, a term typically used within the context of opposition to “person-first language”.

“Person-first” language (usually expressed as “a person with autism”, or something similar) implies that the person would be whole (or even improved) without their autism spectrum condition.  It conveys the idea that their neurotype is an optional, separable part of them.

“Identity-first” language (“an autistic person” or similar term), on the other hand, recognizes that Asperger’s/autism is indeed a principal part of one’s very identity.  It conveys the message that the person’s neurotype is part of the fundamental foundation of who they are.

Although I don’t have hard numbers (yet–this might make for a good social media poll), I’m in sync with a vast majority of the autism spectrum community in my own preference for identity-first terminology.

There is no imaginary line between myself and my neurotype.  There isn’t a discernible point at which my Asperger’s/autism ends and the rest of me begins; my neurotype isn’t simply a “part” of me; it is me; we are one and the same.

There’s no way to remove the Asperger’s/autism without also removing the core of myself.  I would not be the same person; I would be someone/something totally different.

Asperger’s/autism is not a tote bag that I simply carry around with me, lugging it from place to place, with the option of setting it down somewhere and leaving it or separating myself from it at my discretion.  It’s intertwined in every brain cell, every neuronal projection, every synaptic gap.  It’s not a single/simple “brain app” that my brain runs that could simply be uninstalled at will; it’s my whole operating system.

The problem that many of us (members of the Asperger’s/autism spectrum community) find with person-first language is that it often seems like a denial of our neurotype, a half-arsed subconscious attempt to sweep it under the rug.  I find person-first terminology almost condescending, as though someone were patting me on the head and saying, “there, there.  It’s OK.  You’re still a whole person.”

Ummm, thanks?  I mean, I’m glad I’m a whole person and everything (heh), but the sentiment is rather patronizing and more-than-borderline-ableist (the default settings and assumptions that a neurotypical, non-disabled world is somehow “the standard”), because it implies that our neurotype is somehow inferior to that of a non-autistic/non-Aspie.  Because the sentence embodying the sentiment should actually read: “there, there.  It’s OK.  You’re still a whole person, despite your inferior neurological orientation.”

And I have this “funny” notion that the Asperger’s/autistic wiring is not inferior to neurotypical wiring.  I personally believe that I’m not “someone with Asperger’s” any more than a gay person is “a person with gayness”.  I don’t want my neurological orientation denied, downplayed, or minimized.  I don’t feel the need to shove it in the face of everyone I meet or talk with, of course, but I don’t want to be sent the message (or to inadvertently encourage the idea) that my neurotype is something to be “lived through” “in spite of” or any other such sentiment.

It’s important that I mention that not everyone in the community feels this way.  Some of us do indeed prefer person-first terminology.  I think I can climb into their cerebral shoes (three cheers for cognitive empathy) 🙂  – my theory (and it’s only a theory) is that the Aspergian/autistic people who prefer to be referred to as “people with Asperger’s/autism” may simply be emphasizing that we are indeed people, and that everyone in the human race is simply their own unique individual.  We’re all certainly human beings, with equal inherent rights and value.  We all deserve to be heard and valued, and not just because we might be on the spectrum or not.

I certainly don’t take issue with that sentiment.  In fact, I agree with its premise.  And I certainly wouldn’t attempt to speak for them or lecture them about how they need to conform to the autism spectrum community majority by using identity-first language.

So….with differing opinions and preferences among the community, should one refer to an Asperger’s/autistic person as “a person with Asperger’s/autism” (person-first) or “an autistic” (identity-first)?

That all depends.  Who are you referring to or talking with, and what do they prefer?  After all, that’s what it really comes down to – respecting the individual person you’re interacting with.  When in doubt, ask them directly.  It’s OK to do so, and in fact, I recommend it.  We’ll probably appreciate the consideration and the gesture.

When an individual opinion can’t be obtained for one reason or another, or I’m interacting with more than one member of the Asperger’s/autistic community, I opt for a fairly-universally-agreeable “Asperger’s/autistic person” or “people on the Asperger’s/autism spectrum” (with an exception made for putting “with” (autism) or “have/has” (autism) in quotes or post hashtags in order to make for easier Google-searching).  It appears to be a palatable happy medium that seems to satisfy people on both sides of the issue fairly adequately.  It might not be a perfect solution, but I’m doing the best I can 🙂

***

(Image Credit: Derek Gores)

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9 Comments

  1. See, I can see both arguments, depending upon a person’s life goals and/or aspirations. For me, being neurotypical *would* be ideal, for reasons I’ve mentioned. As such, I would prefer not to be autistic, even if that meant giving up my elevated level of intelligence and such. It would be a sacrifice I would make in order to attain my personal aspirations.

    That said, I can totally see the other side of the coin, where someone wouldn’t necessarily be able to separate that element from the person he/she is. I respect that also. If a cure were to come about and said person chose not to accept it, that’s cool. I am a believer in individual autonomy.

    What bothers me I guess is the ones who try to speak for everyone. The majority doesn’t speak for me and I don’t speak for the majority. There’s nothing wrong with that, but I wish the majority wouldn’t speak for me. I think we should all speak for ourselves as individuals.

    Liked by 2 people

    1. Agreed. I try to keep my viewpoints personal, saying things like “I can only speak for myself” because that’s really the only person I can speak for 😊❤️

      Like

  2. My whole life I’ve always believed it was best to try to use the words and language a person told you they preferred when talking to or about them. It doesn’t really matter what the context is. I’ve noticed others tend to struggle more. No explanation, really, just an observation.

    I lean toward ‘autistic’ over ‘with autism’ myself, but I don’t really have a strong preference and neither offends me. That shouldn’t be interpreted to mean I see any way to separate autism from my identity. That’s pretty much baked into the definition of something that’s a pervasive neurodevelopmental difference. The pervasive part means there is no part of me that’s somehow unaffected and since it’s developmental it’s been a part of me my whole life.

    Unless we somehow develop the technology to completely rewire brains (and contemplate how frightening the implications of that would be) there’s really no possibility of a cure in the classical sense. Given that, the only “cure” for autism would be one based in eugenics rather than individuals, which is probably why much of the research to date has been focused on trying to identify the underlying genetics. However, it appears that the pervasiveness of autism extends into its genetic mapping and there doesn’t appear to be a relatively straightforward mapping as there is with celiac disease or Downs.

    Even if we did learn how to completely rewire brains, why would I want to cease being the person I’ve been my whole life to become someone completely different? Whoever I might be with a non-autistic brain, that person wouldn’t actually be *me* in any definable sense. It would almost be a form of suicide even if my body kept living as someone else.

    Liked by 1 person

    1. (Applause) I completely agree! 😊❤️ The genetic/eugenics aspect scares me too. I wouldn’t want to have been born any different than I am now. I just want the rest of the world to be less obnoxious and a little more accommodating 💞💞

      Liked by 1 person

  3. This is interesting.
    Those examples of ‘person with Aspergers’ to me aren’t mutually exclusive to seeing a whole person.
    I write ‘woman/ female on the Autism Spectrum’, or when speaking I say ‘I’ve got Aspergers’.
    To me they both mean 1) I am a person. 2) who has extra skills, challenges and brain wiring.

    I’ve thought of it as if you think of people in a grocery store, they’ve all got food they like and dislike. They favour certain products for various reasons and they don’t use things from past experiences.
    They’ve been raised with and developed their own sense of humour, ways of doing their jobs at work, and all have experiences of being let down and failing at things.
    Now imagine that a quarter of them also have Aspergers, or are Aspies.
    This can reinforce, create, inform and dismiss experiences and values that they have.
    Above all, to me, they are people with pasts, memories and feelings.

    Plus they have Autism / Aspergers.

    These traits make me, inform me and frustrate me at differing times. They are me at times where I’m whole and complete. They are also seperate from me at varying times.

    Thats just how I am feeling. I don’t know if I could or want to change the words ‘female with Aspergers’.

    Liked by 1 person

    1. Thank you for your perspective, luv! ❤ I really do like your viewpoint! I definitely respect it and I love how you explained it 🙂 (Applause)

      Liked by 1 person

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