Saturday, January 4, 2014

I Do Not Have Autism. I Am Autistic. This Should NOT Be a Problem for ANYONE

This post explains why I don't have autism. I do have an autism diagnosis, though. I am Autistic. Just today I was thinking about how tedious I have found it to have to explain, over and over, why I say I am Autistic, and not that I "have autism." The phrase "have autism" actually sounds very odd to me. Since I am not really all that interested in the "Autistic vs. person first debate," having never used person-first language and it never having been an issue for me, since I am not embarrassed or ashamed to call myself Autistic, I have never written much about it until now. I also capitalize Autistic, because for me, capitalizing emphasizes that my perceptions of autism are positive, not negative, and that I belong to somewhat of an Autistic community, although communities tend to shift, change, move in different directions, and that sort of thing. I won't be defining "Autistic community" in this post at all.

My position on Autistic "vs." "has autism/person first" is that it is UP TO THE PERSON who has the disability to name themselves. When a person has a clear preference, other people should respect it. If they don't, they are being disrespectful, whether or not they are also saying how much of an advocate for people with disabilities they are. If a person's preference is not known, then people will use the language they prefer. I will say someone is Autistic if I don't know their preference. I will change for that person if I find out they prefer something different. I will not change my preference because someone else wants me to call them "person with autism." Sometimes I have said "person on the autism spectrum" just to avoid completely derailing a conversation because people get so wound up about what we can or can not call ourselves. See below for examples.

I will note some of the times and places that people, not Autistic (or having autism) people, have gotten completely baffled, upset, sidetracked, etc. about my saying AUTISTIC instead of "have autism."

I gave a keynote presentation at an AUCD-LEND conference in Washington DC. The conferences had the disturbing title of "Combating Autism Act Initiative (CAAI)." The speech was about SYSTEMS CHANGE, including changing the "combating" language, which is entirely problematic. The script I wrote and used is "CAAI Annual Meeting: Opportunities for Systems Change".  After my speech was done, the ONLY question anyone asked me was why I did not use "person first language." I spent several minutes explaining that I consider "person first" to be questionable in that it disparages the person's disability and tries to separate out "the person" from "the disability" as though the disability were some disembodied and unwanted part of a person. Disabilities are part of us, not separate. If they were separate, we could (if we wanted to, and I don't) leave them in the house when we go out. We can't. Some of us don't want to. For some of us the idea of us being separate from part of our selves, and usually the part that other people don't like, seems absurd and offensive. At the AUCD meeting, NO other questions were asked, by these presumably competent and interested people. They wanted an elevator speech or something. They did not get one from me. The minute I said "Autistic," their brains seem to have turned off to anything else I said. I think my presentation was pretty good. One person came up to me privately and said that the speech was difficult but that the attendees needed to hear it.

Another time, I watched Ari Ne'eman give a presentation. He used the word Autistic. After the presentation, one parent challenged him about saying "Autistic." Many parents, educators, and other professionals have been trained, as they tell me, to use "person first" or "has autism" and they have been trained to think that "Autistic" is something bad. Guess what. Autism is not bad. So, saying I am Autistic is not bad. If you think saying AUTISTIC is bad, then, really, you think autism is bad. I am using the term "bad" in the sense of undesirable, not immoral- the equating of immorality with autism is best left to Autism Speaks: ("I am autism....I know no color barrier, no religion, no morality, no currency.") 

I had a position, for a very short time, at a non-autistic-led disability advocacy organization. We used to give regional conferences. One of the things I was asked to do at almost all of the conferences I attended, was to talk to people who attended about why I say "Autistic." Another person, who says he "has autism" talked about why he says "has autism." See above, where I say the disability is considered problematic. When people say "I am MORE than my disability," they seem to me to be saying that they don't like their disability. This person tried on a couple of occasions to talk with my privately about the differences, rather than just when we were on stage. Each time he tried to talk to me privately, another person would come up and try to disengage him from talking with me. This happened at least twice, and I think more. I stopped trying to talk with him. If I had it to do over again, I would tell the person running interference to back off, but at that time, I was trying to keep the job as I needed the money. After we would give our joint talk, I would finish by saying "We do not have the same point of view about what we call ourselves but we can be friends and do advocacy- he has autism and I am Autistic, and we each have the right to make that choice." Although I found having to give the presentation annoying, sometimes we do have to start with things as simple as a disabled person's right to name themselves and their disability. It's my disability; I get to be the one to make that choice. Period.

Common myths about who calls themselves Autistic: "It's only those "high-functioning" people who say "I am Autistic." Functioning labels are a big problem. I don't use them. In this case, "high functioning" is used to dismiss people's choices about what to call themselves. "People who are nonverbal prefer to say "has autism." Some do, some don't. Some "high functioning" people I know say "has autism." One size does not actually fit all.

Below is an image I made, with a caption that says what the image is. I have this on my refrigerator.It reminds me that in my own house, I will do what I want, including "Autistic behaviors" that I don't always feel comfortable doing in public but which are necessary for my own self care. Note that it does not say "This place is the space of a person with autism."

Image: A picture I drew with colored pencils. It says "This place is Autistic Space." The word "This" is blue, with an arrow pointing down to the THIS. The word "Place" is in greens and has red and purple flowers and green grass around it. The word "Is" is red with the squiggly line under it. The word "Autistic" has a different color for each letter. The A is black, the U is red, the T is orange, the I is yellow, the S is green, the T is blue, the I is indigo, the C is purple. The word "Space" is purple and has stars, moons, and planets around it in yellow and purple."

Other links about "person-first" language, with many links on each of these pages:  Yes! This is a very good one, documenting a very professional approach on the part of Judy Endow, MSW, who uses identity-based "I am Autistic" language, and a parent with a PhD who does not use it, and who uses indirect and a somewhat attacking approach to attempt to dismiss people's rights to call themselves what they want to call themselves. He ends up trotting out the same old argument about "she's not Autistic" to dismiss anyone and everyone who says they are Autistic. Yawn. But good reading.

*(Vaccines don't cause autism, although people can, rarely, have serious adverse reactions to vaccinations.)


Florencia Ardon said...

Thank you. I keep saying my daughter (5) is autistic just as I say my son (7) is neurotypical. If I were to say he's neurotypical and she "has autism" I would feel I'm making a distinction between "good" and "bad". Her autism is pervasive, she was born that way and will die that way (in a day far, far away in the future). It has very good things and some challenging things for her, such as functional communication. On the other hand, she's a wiz in math and reading/writing, has a fantastic memory, is very caring and affectionate and well, I could go on and on. There is no way to know what comes from "being autistic" and what comes from our genes and way of raising her. For instance, she's stubborn, but heck, so is her brother and her father and me, for that matter. ; )

suburpcomix said...

It's the persons choice. Got it! ;)

PK said...

"My position on Autistic "vs." "has autism/person first" is that it is UP TO THE PERSON who has the disability to name themselves. When a person has a clear preference, other people should respect it."

Thank you for this. I am an autism parent of an autistic son. I used with autism for a while, till I started reading blogs of autistic writers, and most (not all) prefer the term Autistic when self-identifying, so I followed their lead. I often use "on the spectrum" along with Autistic when talking to others I think there's a bit of "shock value" attached to the word, which bugs me as well. I would like to reblog this if you don't mind :)

HeatFan4Lif said...

I think a person is not their disability. At least I've never heard a person refer to themselves as down syndrome or MS but instead they have that disorder. What do I know? I don't have autism my son does. Maybe I should call him autistic instead of Christopher.

Christina Baublitz said...

I use the my son has autism because for me, autism isn't all that he is. He is smart, creative, silly, intelligent, handsome, strong, a fighter, plus many more things, as well as he has autism. In my mind saying that he is autistic makes me feel like that is the only thing that defines him. Though, after reading this, I understand a little more why some people prefer different things. Thank you for sharing this. I like to think that I'm an open minded person who respects everyone for who they are, and not the little box that so many want to put them into. I learned today. I'm still a work in progress, and I know that I will mess up at times, but I strive to correct those mess ups and never to do them again. I strive to better myself always. So that I am constantly learning things. I just want to be the best mom to my son that I can be. The best me that I can be and the best wife that I can be. Thank you for reading this. Please feel free to send a message back or ignore me.

margothecatlady said...

Maybe it's our perception of autism makes a difference as far as what language we use. If you believe autism is a medical condition or disease, or something we consider negative such as cancer or kidney disease, we might want to say this person has autism, cancer or kidney disease. If we think autism is a difference like having brown hair or being a genius you could say this person is a brunette, a genius or autistic. I think our world has a lot of learning to do as far as perception of autism and that's why this is matters so much. What do I know? Nothing really, but my daughter is a beautiful brunette autistic woman who has a touch of genius. Wait a minute if someone "has" genius, isn't that a good thing.? Now I am really confused.

Leneh said...

If I say I am Canadian, does that imply that's the only thing about me? Should I say I have Canadianism? How about motherhood? Should I not say that I am a mum lest people forget that there is more to me (though not a *lot* more it seems) than having offspring?

Samuel Hetler said...

Autism is not the only thing about me, but it is a part of everything I am. That's why it's call pervasive. I am autistic, others are neurotypical. Is someone without autism a person who has neurotypical? Without autism I might not be funny, creative or a genius.

Fitz said...

I personally do not care how it is said. My girls do not care either (we are all on the spectrum). I think this is a NT issue that was created in an attempt to be politically correct. Ridiculous really. Have autistic...whatever. People can say it however they want if it makes them more comfortable. I don't really see the big deal.

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