Friday, August 31, 2012

Autistifying My Habitat

Kassiane Sibley

TPGA editor Kassiane Sibley went to Autreat in July, which is a "retreat-style conference run by autistic people, for autistic people and our friends." She has written about her experience there, and has now put into place at home, some of what she learned and encountered at the conference.

At Autreat I learned that my anxiety and my difficulties with doing things that need done (hereafter referred to as “adulting”) are not things that I have to just live with. Internalized ableism says I just need to try harder, and the attitude of “you're an adult and should act like one” says that too, but let's face it: I am an adult, and that does not mean “I magically have everything together without reminders,” it means “you aren't the boss of me! I can eat ice cream for dinner! I do what I want!”

In keeping with the second, realistic definition of being an adult, I set out to make my apartment and my life accessible to me. I've tried systems like Google calendar, and a paper and pencil planner before that, and these just aren't things that work for me-there's too many steps, what with having to remember to put things in there and then having to check it later. If I cannot see it at all times, it does not exist. If it requires me to be able to access a pen or other extra pieces to use it at all, it will not get used because I can't always find a pen. Using what I know about what I need help doing and how my brain works, I set up a set of visual supports.

I came home from Autreat singing the praises of the interaction badges. Wearing an interaction badge at home doesn't exactly work though, it's not like my roommate can see it if I am wearing it and holed up in my room because I don't want to interact! This is my solution:
Each column stands for a method of communication. The one on the left is “any”, the one in the middle is “text only” and where my initial pretty much lives, and the one on the right is the never-used “verbal only” as requested by my roommate. The green squares mean “talk to me about anything, I am open to socialization”. The yellow ones mean “only talk to me if it is important; if it can wait then don't”, and red means “unless you are bleeding out or on fire, leave me alone for now”. It's much better and less stressful to keep unwanted interactions from happening then to find a tactful way of saying “I don't want to talk to you right now” after someone has tried to start a conversation.

As far as leaving the house goes, my big major issue is getting out the door and thinking I forgot something, or getting on the bus and realizing I actually forgot something. For transit users this is much more of a problem than people who drive, since our ability to get from point A to point B is dependent on someone else's schedule. I've always been a compulsive checker, but since I can't consistently hold a list of all the things I need in my head I still frequently forget things, and the very thought of forgetting something essential has brought on legitimate panic attacks.

Solution? Making a checklist! I have one posted by my bedroom door and one posted by my front door: It has all the things that I absolutely need every time I leave the house. I might forget something that I need for a particular instance using this system, but posting the things I always need frees up some working memory for the one-time items. Since I check for my phone and bus pass at each door now, I do not feel the need to check 6 times on the (1 block) walk to the bus stop. Very low chance of forgetting things = very much reduced anxiety, and consistently remembering my ipod = very much reduced sensory overload on the way from point A to point B.

Now, part of Adulting is keeping an abode in a condition other than “all the natural disasters in the U.S. auditioned here”. This means, unfortunately, that I have to do chores on a regular basis; sweeping, mopping, cleaning the sinks, et cetera. One of the reasons I struggle with this is that I have time agnosia (which is what it sounds like. I don't grok time. I can tell you how long an hour is, or a week, but that doesn't mean I really understand what that means) and therefore I don't really get how long ago something was done and if that was too long ago or not. Another reason is that “stuff needs cleaned” is abstract and giant and daunting.

So, I made this chart. The column on the left is things that have been done this week, and the column on the right is things that have not yet been done. I arbitrarily chose a week because “move stuff back to the right on Sunday” is something I can do, and doing each thing once a week is pretty reasonable. Instead of “clean the kitchen” or “clean the bathroom”, each task that is part of cleaning an area gets its own little card. I might not have the spoons to clean the bathroom, but I can probably manage to clean the toilet, for example. At this point in time we have not elected to assign chores, though if it became a problem with one person doing all the work consistently, I would have a “Done by K” and a “Done by A” column rather than just a “done” column.

I hate the grocery store with the passion of 100,000 fiery suns. Perhaps more. Then while in the store I get overwhelmed because I didn't think about what I needed before I went in. The lights and the people and the colors conspire so that I walk out with exactly nothing I needed and all sorts of things I will probably never eat. I cannot count all the times I've walked out of there with something I won't eat but it seemed like a good idea at the time.

So I made this shopping list. If I am fearlessly honest, I do not have a lot of variety in my diet-- I eat kind of like a yuppie toddler, really. I do not try new things unless they present themselves to me. As a result, a list with all the things I frequently eat on it is really useful for me. When I run out of something I move it to the middle column (or the far right one if I don't think I'm going to want it, or if it is out of season). Then I can look at it or take a picture to go to the store, thus allowing me to get in and out of the store in under ten minutes. Most of my time lost in the grocery store was previously spent trying to visualize what the inside of my fridge or cupboard last looked like. Visualizing the list is much easier cognitively.

Back in my youth, I struggled with getting homework done. I recognize that it is a thing that I need to do, but remembering what to do when I both have the ability and time to do it isn't something that comes naturally (see also: I failed at using planners spectacularly). Sometimes I have the ability to sit down and do four or five things, other times focusing on anything is just not going to happen. Fortunately, in college they give you syllabi with all the things that you're going to need to do and when they will be due! Hooray! That means I can do things early when I have the mental energy!

The homework wall is a thing I have actually been doing for quite some time now. This one is from the beginning of last year's fall term. Each item on the syllabus, be it expected reading, a term paper, or a test, gets its own note card. Then I stick all the note cards on the wall until I'm finished with the assignment written on it. I find taking the note cards down immensely satisfying, and the visual reminder that there is an end in sight is also very helpful during mid-term semi-burnout.

Finally, the support I am most proud of. This is my all-the-things board! The upper left hand corner has my general weekly schedule-things that happen at the same day, time, and place every single week. For about the first month of a new schedule I check constantly (I cannot forgive myself if I am late or accidentally forget to go to a recurring event thing. I just can't. I'm weird) and having it right there to check makes my life easier.

Next to that are things that need to be done daily and things that need to be done weekly. Each has a “done” and “not done” column. Putting it where I can see it every day means I am more likely to set aside 30 minutes per class of doing homework or reading-it is written down and in my face, so it exists! Since my brain doesn't really do time, “do weekly” is a way of seeing to it that things like going to the store happen before it is a dire emergency. So the top half of the board is recurring things that probably will settle into a nice routine once the term starts and I am used to the board always being there reminding me.

Underneath, all those little post it notes are one time events. Some of them are doctors' appointments. Some are other appointments. Once whatever is on the post-it happens, I get to take it off, I did not forget (and thus do not need to make a phone call rescheduling), life is good.

The lower right hand corner is a reminder to eat. This is probably the single solitary most important reminder on here. I remember to shower and brush my teeth. I remember my medication. I remember to take what I need with me more often than not. But without reminding, I absolutely will forget to eat before it's dire, at least once a day. Without blood sugar every self-accommodating mechanism, no matter how good, is completely useless.

So far these have been very useful for me, and if I think of a way to do something better I can try it, but just this starting point has reduced my anxiety dramatically. This adult can have velcro all over the wall if she damn well wants, no matter what they all say about being a really real adult.

I'd be interested in knowing what helps other people, too.


A version of this essay was previously published at