Saturday, May 21, 2011

I don't have autism. I am autistic.

That's a thing I've been saying forfuckingever. And yet people keep insisting on pointedly saying that I and others "have autism", are "individuals who happen to have autism", are "living with autism", or the ever popular "are individuals who just happen to have autism".

Those are a lot of words just to deny a fundamental part of who I am, huh? It's like people think if they wedge enough words between their identifier noun and the word autism, they'll pry the condition off of us.

I know that y'all are taught person first language, and many communities prefer it and I support that. But the purpose of person-first language is to respect the person you are describing. Ask them what they prefer. I, and many MANY other autistic people, prefer to be called autistic, not "living with autism" or "having autism" or "an individual who happens to have an intimate neurological understanding from living with autism" or whatever.

It is profoundly disrespectful to insist upon person first language when the person or people you are describing do not wish to be described this way (Kathie Snow of Disability Is Natural, I am looking at you, among others). Part of respecting my agency is respecting how I wish to identify, even if you don't like it.

Since autism is like an operating system, you cannot separate it from who I am and how I work. Once you install Linux on your Windows machine (unless you are dual booting), it's not a computer that happens to be experiencing Ubuntu (or whatever). It's a Linux computer. It works differently than a Windows computer or a Mac, for example. It's not broken, it's different. As already discussed, you can't just go and change someone's operating system. It doesn't work.

Respect that. I am autistic. It's not a dirty word, I promise.

16 comments:

Leah Jane said...

I always thought that "living with autism" was a cleverly masked way of describing parents, caretakers, and relatives, rather than describing autistic people themselves. I guess that shows just how problematic this language really is...

Neurodivergent K said...

I hate that usage too, but I'm getting increasingly more frustrated with all autism discourse being about our families.

mnjane said...

Ummm,,,, how about if that parent is autistic as well. I am an autistic parent with a partner and kids on the spectrum.....and I actually expect that many parents with autistic kids actually either have many traits or are (unlabeled) autistics themselves....apple not falling far from the tree and all that. Some of the most anti-autism people I have met behave for all the world as if they *are* autistic and trying to foist the blame on vaccines *is* their special interest. They sure can be boring, too.

Sarah C said...

I completely respect your point of view on this. I don't know what my daughter would say even though she is verbal. I know that people refer to those as "having autism" and those that use "autistic" when describing individuals "affected" by autism. What I believe is that my daughter has autism and as a result she is who she is because of that. I don't think I would change her if given the opportunity---but I would want to relieve her of the frustration that goes with it.

13x30 said...

My only issue with that last analogy is that cure folks would be all, "Wipe the system and install WINDOWS, a**hole!"

Heldenautie said...

Unfortunately, the BIOS is locked. FOREVER!

Heldenautie said...

Or fortunately, I should say.

Neurodivergent K said...

@mnjane Unfortunately, autistic parents are tragically erased in autism talk as well. It's not acceptable. And the very idea that parents can BE autistic isn't acknowledged in the general world. I wonder if there'd be less franticness about the whole thing if parents of autistic kids were evaluated as well. Like, 'yep, your kid is autistic, yep, so are you. Congratulations".

@Sarah C: I want to relieve the frustration as well (and anyone who has met me, ever, knows I get frustrated at a number of things, both internal and external). Something that'd help with frustration, I think, is the world acknowledging that we have a different processing style, not a disease.

@13x30: ew, then we'd be broken!

@heldenautie: you better believe it.

The Untoward Lady said...

Gosh... I'm glad because if I just had autism I might loose it somewhere and then what would I do?!

13x30 said...

It's part of the trend to say things like "my depression" and "my [whatever]" to make it sound like you're in control of something that you clearly ar not, and to distance yourself from the reality that, gosh, it's probably affecting you more than you'd like to think.
I always picture the phrase "my depression" as being like one of those toy dogs women carry around everywhere. Complete with tiara and $600 designer bag, and a suspicious ability to make it seem like the thing never poops.

plureshouse said...

Yeah, I definitely agree with you here: autism is an integral part of who we are, and isn't something that's separable in the way that other things are. Person-first language used with autistics who prefer NOT to use person-first language is blatantly disrespectful. I've also noticed a tendency of the 'people with autism' crowd to lean more towards medicalised 'cure' rhetoric, rather than understanding autism as a 'difference in operating system', as you said.

~Kerry

katie miller said...

I've always thought "living with autism" is especially inane. What else would I be? Dead with autism? If I "have autism", I'm obviously alive. People don't refer to the neurology of a corpse. If necessary to discuss the neurology of a dead person, we use the past tense.

antonio said...

thanks for this Neurodivergent. I am an alcoholic, always will be, although I don't drink for 17 years now. I do understand your point, how you see yourself.

One more thing: I am also gay. It is not a disease, or a 'choice' I can change like changing underwear. I AM alcoholic, gay, autistic, leftist, black, white, human being...

Big hug
Antonio

David N. Andrews M. Ed., C. P. S. E. said...

"My only issue with that last analogy is that cure folks would be all, 'Wipe the system and install WINDOWS, a**hole!'"

Indeed.

And why install windows when we're already running Linux?

Neurodivergent K said...

@David That was a large chunk of my point. Ewww, Windows

acb109b2-c95d-11e0-b514-000bcdcb471e said...

Yes! I like this. I never thought of it that way but, I always call myself autistic and, I realise now why I like it. I am a person "with" many things, but I "am" autistic, it is not something that can be separated from me.

It's funny because, I always said for a joke, that I run some really strange operating system (like old Atari or something), people except it to play some modern games and use the internet, and, it can't do that, but it's not broken... it's just very good at what it was made to do, even if it's not what society thinks is useful right now.

This is a very late comment, but, I wanted to reblog this on my Tumblr but I read your post about how that means people are not commenting on you here, and, I thought that I should share my comment here as well.