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.
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.
Hi Alyssa,
ReplyDeleteSo 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 (http://notesoncrazy.com/2013/09/thoughts-on-todoist/) 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.