Defining Autistic Lives


Defining Autistic Lives is a review of Sue Rubin’s movie, Autism is a World. One that I mostly agree with.

I finally got the chance to watch the movie. A lot of the things I would have to say about it are covered in Defining Autistic Lives. Among the things that are not, what stood out to me over and over again was the behavior of staff and other professionals.

I’m way too familiar with a particular kind of staff behavior. I don’t know how to describe it. It’s patronization with a veneer of friendliness over it. That behavior has been present in all but a few people who’ve worked for me. I am startled, in fact, when I do not encounter it. I am so conditioned to being treated in some manner like a child that I frequently forget what it’s like to be treated like an adult.

When I’ve had the opportunity to interact with people I know who are primarily known as physically disabled, their staff seem to have overall less of that tendency. That tendency is still there in some, but I have a good chance of seeing staff without it. In the developmental disability service system I could wait years and only see one or two, if that, who don’t behave like that.

I am not surprised that Sue Rubin’s staff behave that way. In all the time I’ve spent in California’s DD system, I’ve only known maybe two who haven’t, and even they’ve slipped into it from time to time. What’s also worrisome, and also difficult to pin down, is how people like me, and quite possibly like Sue Rubin (although I obviously don’t know her background enough to say that for sure), are socialized to behave certain ways in response to that kind of staff behavior.

From here on out, I’m not talking about the movie except when I explicitly mention it.

I call it Cute Little Client mode when I do it. It feels like someone else is taking over my body. One of the best examples I have comes from when I was running around the house and couldn’t stop. I was getting out of breath and started having an asthma attack and screaming at the same time, so my staff at the time decided to try to help me stop. She put up her hands and told me to put up mine, and something about the way she did it triggered Cute Little Client mode.

When I put my hands against hers, and ran into them, I switched into this weird giggling. I didn’t find anything funny, or amusing, or anything, and I knew that this was some bizarre conditioned response and not a response of my own. (Yeah, the running around hadn’t been my intentional doing either, but the giggling and other behavior at that point was a whole ‘nother kind of involuntary.) I felt kind of sick and creeped out. Her response to my mannerisms at that point was to treat me even more like a child than she normally did. What needed to happen, happened — I got under a weighted blanket and used my inhalers — but the manner in which it happened was patronizing and infantilizing. I was happy when her work shift ended and I could lie there and sort things out in my head without going through all these weird triggered responses.

My current staff says she’s seen these things in another client I know, too. Staff like to trigger a certain response in him that looks eerily automatic to her. Then they congratulate themselves for having “connected” with him, and basically go on about how cute he is, whether they say it out loud or not. When he stops responding that way, they do the same thing over and over until he’s worn out. What is eerie is that they don’t seem to be responding to him, but to some sort of cuteness mechanism.

Since he can’t talk or type, I’m not going to say that’s what’s going on with him definitely. But I’ve certainly experienced the same. Staff push and pull on me mentally in certain ways and I go into that mode. They find it cute and sometimes believe they’ve connected with me in some “special” way. I struggle hard again st it and sometimes succeed at stopping all movement, which they find alarming and wonder why I just switched off like that. Then I try to reorient my mind to something other than being cute, compliant (or only cute forms of “non-compliant”, like my friend Vanesa sometimes managed in one institution, she was a master of Cute Client Mode and even had “naughty-but-cute non-compliance” down to a T), sweet, and pleasing to staff.

Thinly-veiled patronizing staff behavior disturbs me to watch. Feeling taken over, almost possessed or puppeted, by the cute-clienty behavior makes me feel physically ill in a way that just plain ordinary involuntary behavior doesn’t. I don’t know where I learned it, but I have a suspicion it’s yet another institutional survival skill, both in the enclosed kinds of institutions and the institutions that pass for community. Watching the staff end of that behavior — not sure about the client end, because I’m not in her head, but I wouldn’t be shocked since she’s in the same developmental system I am and a lot of us there seem to pick it up — in that movie reminded me pretty jarringly of what Cute Client Mode feels like.

I will welcome a time when nobody has to act like that. I will also welcome a time when it doesn’t pop up to haunt me in random interactions with people. I know very few people who can see through it and realize that I am not gleeful, but sickened.


About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Developmentally disabled, physically and cognitively disabled. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died in 2014 and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

One response »

  1. another lightbulb just blinked on. some day i will run out of bulbs?

    this is not only a staff/client thing.

    but i only just now put 2+2 together.

    anyway, just a little while ago i was talking to my mother about a survival mechanism i have at work for being charming to people who pretty surely won’t understand me but i need them not to get mad at me when i screw up something, which i inevitably will, because i am, as my previous boss said, “paperwork-challenged”.

    i guess i got into this in college trying to live in a dorm while being severely strange. it’s like i can give off this vibe of “i know i am weird and i was confused but aren’t i cute and nice enough for you to not be mad at me?” and the scary thing is that it usually works.

    in another post you talked about the I AM NICE vibe. i almost wish i couldn’t do this vibe because then when i try to tell people “in real life i am not as nice as i am at work” they think i am being modest or low-self-esteem, but really isn’t it more realistic that i can know that i am a bitch sometimes? and that i use up all my small amount of patience on the people i don’t live with.

    but people don’t like to admit to believing something like that, or i donno what is going on in their minds really…

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