15 September, 2011

3. How you learn how things are done

My dad told me that most parents wouldn't understand my "visceral reaction" when I see indistinguishability held up as an ideal, or even as something that would be nice. As if we were talking about religion, which he dislikes, he said, "Maybe it's not important and it's not what they should want, but most people want to be normal, so they want their kids to be normal. You can't tell them their choice is wrong."

"I don't really think it's parents who make that choice," I said.

"Oh, so it's just the evil professionals making parents do what they want?"

"Well, yes." Not that I think professionals are evil--this is really about staff infection, not individuals. Lots of the infected are probably great to play Dungeons & Dragons with (more on that later) but they have a particular way of thinking about people with autism.

Parents often don't. I know how I feel about disability in general and autism in specific, because disability is a permanent part of my life. For the average person that isn't the case. Now they have a kid who who has this--what do you call it? Disease? Mental illness? Neurodevelopmental condition?--well, they have this scary autism word that you see on TV. What the fuck. This is terrible. What do they do? What are they supposed to think?

It's perfectly normal, when something happens which is challenging and with which you have no experience, to look to the people around you for examples of how to respond. If your kid has autism, the people around you are often telling you that "recovery" for someone with autism is about looking non-disabled, and that this recovery is urgent, so you go along with it because you're not a fucking autism expert. You don't know how things are done.

Unfortunately, it's exactly the powerful momentum of how things are done which keeps people from thinking much about the things they are doing. Sooner or later the parents know how things are done too.


  1. Yes, the momentum does play a big role in How Things are Done.

    And there are still a lot of moments where you (I) might not know.

  2. This is really great.

    When I was in and out of the psych system I definitely was treated in a way that was bad, even though I more or less avoided the really horrible stuff. Eventually I figured out that I had been treated badly rather than just being a sucky person, but I felt like it was the fault of the individual people I interacted with. When I figured out individual people weren't the source of the problems either that was a pretty big realization and so many people don't get that. So many people think they can fix things just by virtue of their moral character.

    I've also been thinking recently of a friend I had when I was younger who had this quasi-abusive dynamic towards me. But a lot of that was things she was bringing in from her relationships with other people (especially her mother) and I was bringing in the expectation, even the desire, of being treated like that in from other people. And I think there does have to be a point where you have to say "this individual person did something," but I also have to question the ways people learn to relate to each other in general.

  3. I am SO irritated with Blogger and Explorer and myself for forgetting that when I attempt to comment a Blogger website from my explorer browser it invariably tells me my google account isn't authorized to do so. . . and deletes my comment.

    I just commented this blog. And it was a doozy. But now I'm too irritated with myself and the other guilty parties (mentioned above) to retype it all since I commented it in explorer. . . and it told me I wasn't authorized to do so. . . and deleted my comment. All of it.

    So. . . good blog. I liked it.

  4. aw! well, maybe someday you can tell me what it was about.

  5. in a nutshell. . .

    1) I agree with you. Parents in general and I in particular don't know what the hell they're doing. There's no handbook, and the parents that give a shit try to do what they think is best. . . so they ask "the experts". And do whatever they're told.

    2) You present a unique point of view among the blogs I read, and I enjoy it. I'm conscious of not wanting to say something offensive or blatantly stupid as a result of it.

    3) Most of the time as a parent I'm concerned with doing "the right thing" with my daughters. With my autistic daughter, what's right isn't always what's "normal". For instance, do i "correct" a behavior? Or ignore a stim? I want her to be able to cope with her surroundings as best she can, but currently spitting in my face (blowing raspberries) is that coping method, and since she has a cold. . . it's draining.

    It all tied together with your blog so much better the first time I wrote it all out, I swear.

  6. I saw that post about spitting, I was thinking it's interesting that you draw a line between stimming and behavior. I don't necessarily get why you do that because I feel like having someone spit in your face is pretty gross, regardless of why they're doing it, but I guess if you think it's something she needs to feel okay maybe you are right to not want to crack down on it. It's so cool that you think about her perspective/reason for doing things.

    What really creeps me out is when staff/parents try to construct something that someone either does to feel better, or just because they're a person and they happen to do it, as being hurtful to someone. Like "handflapping is a nonattending behavior"--well, if it's a nonattending behavior, then I guess you should stop the person from doing it, but...wait, you just put that label on a behavior to give yourself an excuse. You might as well say that speaking in a southern accent is a nonattending behavior because you don't like southern accents.

  7. haha. . . southern accents CAN be distracting.

    Yeah, well, in our case there are several touchy subjects where we try to figure out. . . which is a 'behavior' and which is 'coping'.

    The spitting thing is just the issue du jour. I agree, it's not ideal, and the approach we're taking is that if she's not spitting ON someone. . . she's just blowing raspberries alone while she turns pages in a book, or watches TV, or whatever. . . then we're treating it like she's stimming. If she blows raspberries in someone's space or face. . . we stop her, make her say sorry and tell her no spitting.

    But does she get why? Should we stop it ALL because we permit it SOMEtimes and not OTHER times and she's not going to get the difference?

  8. that is complicated, I definitely wouldn't know what to do in that situation. maybe she'll switch to something else on her own. good luck?

  9. thanks. She does go through little phases, and I'm hopeful that this one will transition into something else.

    It IS complicated. But honestly, it's no more complicated than raising any kid is. . . we just ask different questions than most parents do.