Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Hillary, Alyssa. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Hillary, A. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from

Tuesday, October 22, 2013

Not Tolerating it Doesn't Change It.

Trigger Warning: Ableism, some internalized

Augh something my dad said, practically off-hand, over the summer is coming back and being a problem in my brain right now. He probably doesn't even remember saying it. No, really, I'd bet that he doesn't remember saying it. He'd totally agree with the sentiment, though, because, you know, he said it and it's in line with other stuff he's said. [If you want to know where internalized ableism comes from for a lot of autistic adults, look to the parents. With autistic adults who weren't diagnosed until adulthood, still look to the parents because seriously how good a job can you expect a parent to do when they've been told their kid's brand of weird is something totally different from their kid's actual brand of weird?]
Disorganization after the age of twelve isn't something that I tolerate.”
(I lived with my mom during the school week. She saw my locker a few times, but my dad never did. Thank goodness.)
How are you going to not tolerate it, dad? Really? How are you going to prevent me from being disorganized, me, who, as much as I prefer order (I don't require it, but I do prefer it) I can't create or maintain it. It's been tried. I can't do it.

Are you going to blame the fact that I can't do certain things on the way I was raised? I mean, I know you like to blame stuff on mom, but seriously, are you going to blame the fact that I can't keep myself organized on my mom? She tried to teach me. You... never really tried to teach me to keep organized. Sure, she failed, because it's not something I can do unless someone has some really off-the-wall idea that can magically create the required cognitive skills that I'm fairly sure I don't have, but she at least tried. She kept trying, too. So did (some of) my teachers. Others made jokes about it, some cruel, some not. One helped and made jokes that managed not to be cruel. By helped, I mean that when my locker was the complete mess that it always was, they spent about half an hour with me after school and emptied the entire contents of my locker onto the floor, pulled out the trash and recycling bins from the classroom, and helped me sort through the stuff. It didn't always work out well, since I have a limited ability to sort stuff before my brain decides to be done (my record for room cleaning type activities in a row is 3 hours, after which I slept for a similar length of time and had no more productive abilities for the rest of the day. I had been at full energy when I started. By no more productive abilities, I mean I wasn't even capable of acquiring food, by the way. And that was with my mom helping with the room cleaning activities too.)
As I write this, I'm staring at a pile of stuff on my desk. I don't even know how it got to the point it's at, I don't have enough stuff here that this level of mess should be possible and yet here it is and no I'm not able to fix it myself and my teacher when she saw it just said that I need to clean it and I don't know how.
Much like with my homework problem, there are cognitive skills that I just don't have and that are needed for this. Yeah, it's expected that people can do this. Yeah, because I'm verbal (mostly) and smart, it's expected that I'll be able to. But it doesn't work like that. I'm developmentally disabled. Look up what that means, if you don't believe what I'm about to tell you, but a developmental disability means that there are issues in multiple of: communication, self-care, home living, social skills, community use, self-direction, health and safety, functional academics, leisure, and work.

Communication? Yup. Inconsistent speech does that. Self-care? Yup. Home living? Yup. Social skills? Yup. Not sure what community use means. If self-direction is what I think it is, yup, that's one of the executive functioning problems I have. Health and safety I think I'm decent with, though the pain tolerance thing means I wind up missing major injuries sometimes (like 3-5 broken bones never making it to my medical record kind of missing major injuries.) Academics I've been great at. I don't know how people are quantifying leisure and frankly I don't think you should since different people enjoy different things. Work? I've had jobs and never been fired, so I'm going to go with being OK there.

But yeah, I'm disabled, do you really think the skills I don't have are going to magically appear when you tell me to do a thing I don't have the skills to do? Do you think they're going to appear when you say you don't tolerate one of the outward signs of my not having those skills? It doesn't work like that. I'm developmentally disabled. There are things I can't do. Telling me to do them isn't going to help. It's just not. Telling me how you “wouldn't tolerate” it isn't going to fix it, and frankly it scares me, because there's not anything you could actually have done about it. I don't need “tough love” to teach me to do this stuff. I need someone who can get it done for me because I can't do it.

And yeah, my mom messed stuff up with this sometimes. Seriously, my mom was told I had a different sort of brain weird than I actually do, what do you expect? She was told that I was just gifted. That's a thing that happened. It's not accurate information, but it's what she was given. Working under the assumption that I'm not disabled, of course you're going to have reactions to disability parts that don't work with the actual situation. That's to be expected. I put that on the bad information, not on her. Since dad's statement about “not tolerating” disorganization came after knowing I'm autistic? Yeah, no, that's him. He's actually not good about this stuff. Mom just didn't have the information required to be good. Still doesn't, really, because no one talks about what autistic adults need. I've got a nice pile of things I can tell her don't work, but as far as what does? Yeah, I'm stumped. “Get someone who has these skills to do the things for me” is basically what I've got. Which, you know, doesn't bode well for this idea that I'm supposed to grow up to be super-successful and all.

1 comment:

  1. Hi Alyssa,

    So I'm not sure if this is just a "this is wrong and this why" explanation or a possible new options allowed. So I am going to tell you my (newish) organization strategy, and if it isn't a advice-allowable post, I'm sorry about that. (I'm not super-good at telling the difference).

    Anyway, cleaning things. It is sort of large and overwhelming and gets out of hand quickly. So what I do to keep organized and make it so that I can see the floor in my room and such is use To-doist. I have it as a chrome extension and on my ipad, so I can have my list of To-do things with me everywhere I go.

    And I like it because it lets me set things as reoccuring tasks and I can break them into as small of categories as I want. SO for cleaning my desk, for example, I have a reminder on Tuesday to put my books on my bookshelf from my desk. On Saturday I have a reminder to put my papers in my file cabinent (because that is the only way I've managed to organize things for class. If it is any ore complicated than stuff things in somewhere, it doesn't happen.) Every 10 days or so I have a reminder to put my pens and pencils back in their containers. It works for me because it is broken down into really tiny, discrete, reoccuring steps. So instead of clean my desk, it says put my books on my bookshelf. I can do that. I know how that works. And it happens regularly enough that I haven't (yet) gotten incredibly behind with anything.

    And then I can break it down by room. By location in room. By tiny little discrete manageable task. And then life works a little better.

    Also, Nattily at Notes on crazy has a lot of stuff on executive dysfunction apps and better things than this comment is ( and tons of reviews of other options because she tried out a whole bunch of different ones, so that's an idea, too.

    Anyway, that's how I keep organized with my executive dysfunction issues. I don't know, admittedly, if it would work for you, since you know, you are a different person and all that, but anyway, that's a thing and I'm going to stop here now.


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