26 March 2008

My Neighbor Autism

When I describe the ways I perceive things, or the reasons why I misunderstand non-autistic cues, when I react to painful stimuli or have trouble understanding something "simple", people will often point to my invisible neighbor autism.

They may give that "ohhh...I see" look that tells me they really didn't see, but rather were imagining, my neighbor autism. They may shake their head, get frustrated, or walk out of the room to leave me to my devices because they don't want to deal with someone who is self-injuring. Then later when talking to a friend over a cup of coffee in the lounge they may say, "Do you know who her neighbor is?"

Sometimes, they say, my neighbor moves in, and then in a hushed, whispered voice, say, "She lives with autism, you know."

The fact is that I have no neighbor called autism. But that is not what disheartens me most. It is the fact that people tell me - and not always overtly - that I ought to be ashamed of that neighbor. There are a few things I would like these people to know:

It is not more politically correct (or dare I say - Appropriate?) to address autistic people as "persons with autism". The rationale for this is that in using "person-first" language, you are not defining the person by the fact that they're autistic. It is supposed to be an acknowledgement that - yes, we really are human just like everybody else.

All this sounds very nice and good and all. But it's not that simple.

That and besides, political correctness means nothing if that's the only way you attempt to respect someone. For instance, it doesn't matter if you say "mentally challenged" or whatever is the latest term in preference to retarded; if you treat the same people as a nuisance or an embarrassment then your two cents of political correctness have been wasted.

The fact is, using an adjective descriptor of a person is not itself an insult, a denial of the person's humanity, or somehow supposed to define the entire person. It can be used that way (as in the man who sees a woman upset and says sneeringly, "typical female"), but that's not how it's usually applied. It is usually applied just as a plain descriptor ("I am female", "I am gay", "I am tall", etc.). The fact that the average person would have a much larger reaction to "I am autistic" than to "I am tall" mainly has to do with the fact that most people are not familiar with autistics and the fact that the only knowledge most people have of autistics tends to be skewed to the highly negative perceptions.

It also alarms me that somehow by separating autism from a person that this is supposed to reaffirm the individual's humanity. Perhaps this is part of the ghost of refrigerator mother theories and mythic interpretations of autistics as changelings. Our differing body language, our misunderstanding of non-autistic social cues, and the idea that we are autistic because of cold, un-nurturing mothers, have all been incorporated into the distortion that depicts us as less human.

But the best way to fight this ignorance is to inform people that because we act different doesn't mean we're uncaring or indifferent to people. Not to claim that our imagined neighbor autism really is something to be ashamed of.


Alex Plank said...

I feel the same. Although I never really thought of Autism being a neighbor when I heard people say "living with autism." I will from now on, however. :) Great post!

geosaru said...

Does anyone know how to put a caption on the picture when the picture is uploaded through Blogger?

Anonymous said...

I cannot answer your question, just suggest you to go to the Blogger site itself and see if the answer is there.

I enjoy your blog very much and hope you don't mind if I put the link to it on my blog. My blog is at autiblogger.

And I agree with this last post of yours very much. I mostly see "person with autism" written and imagine someone carrying a bag with "autism" written on it.

from renaeden.

Marla said...

I do not think Autism is anything to be ashamed of either. I understand what you are saying here. What would you prefer people said if it was necessary to discuss Autism? I appreciate these posts but often wonder what is the best thing to say.

Thank you so much for visiting my blog. Your comment was very important. I hope that you are able to come back and read what I wrote about Wyatt.

Your blog is very interesting. There is a lot for me to learn here.

geosaru said...

I don't have a problem with people using the word "autism" - even if it does feel a bit abstract and detached, I certainly understand the limitations of language! I just wanted to express the awkwardness of describing a person as having autism or being a person "with autism" as opposed to an autistic person, or "autistic". Aspie and autie are also used, as shortened words. I like the feel of autie better (the "s" sound doesn't settle well with me - words like this make me want to extend the word indefinitely "hissssss...").

And I don't presume offensiveness when I see someone write "person with autism" or describe someone as having autism rather than as being autistic. Or, in the French, the distinction between "avoir" and "etre". For the first few years I was reading about autism on the Internet, I didn't even see a difference.

Then I started to think about it, and it felt funny to me. I thought, wait a minute, if I have autism, then on what shelf do I keep it? I couldn't find an answer to this, whether literally or non-literally.

kyra said...

i wonder if it feels offensive if i stress that autism awareness to me ought to be about personhood awareness first and foremost since people are people, and i worry about a way of talking that puts autistic people here and non autistic people over there. that is why i might say my son is a person first who also happens to have asperger's.

i'd really like your thoughts. thanks so much.

Casdok said...

Great post very interesting :)

geosaru said...

I understand your concern of "putting autistic people here and non autistic people over there". This concern has been mirrored in discussions of various minority groups. People worry about being made the "other" when they have been made the other for so long.

What I hear when I hear "just happens to be" is I hear a disclaimer. It's saying, OK, you may not like this attribute I'm going to bring up, but they're really a person just like you and me, they just happen to have this. That doesn't mean I assume that the person who says the "just happen to" statement feels negatively, but it unintentionally implies that the aversion society has to this characteristic needn't change. Of course, you can also use the "to be" form rather than the "to have" form in this construction (i.e. you could say "he's a person who happens to be autistic" rather than "he's a person who happens to have autism").

The thing is, this is more of a question of identity than of societal prejudice, which is a large issue as well. Yes we should emphasize humanity in autism awareness. This is entirely consistent with describing us as autistic people instead of "people who have autism", though.

In fact, if we concentrate our education efforts to informing the public that "we are autistic people and that's OK and we should be treated with respect and acess to needed services", then I think true acceptance would be easier to come by, as the public would get used to the idea of us being okay as autistic people rather than thinking, "well, they're autistic, which bothers me, but they're people anyway so I guess they're okay".

Inspiration Alley said...

I found your post compelling and totally agree with it. My son is Autistic and although he prefers to just ignore the label, he's just Ashleigh, an individual, he'd prefer to be called Autistic rather than being referred to as having Autism which he hates.