Friday, August 24, 2012

AUTISTIFYING MY HABITAT!!


At Autreat I learned that my anxiety & 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, & the attitude of “you're an adult & 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. See them below the cut.



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 US 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 & 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 10 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 4 or 5 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! Horray! 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 notecard. Then I stick all the notecards on the wall until I'm finished with the assignment written on it. I find taking the notecards 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) & having it right there to check makes my life easier.

Next to that are things that need to be done daily & 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.

36 comments:

Heldenautie said...

This is beyond amazing. I would gladly pay you (in addition to materials and other such expenses like shipping) to do this for me at my home *and* my workplace.

Lynn said...

That is brilliant. I'm going to start something like that for both of us.

Erica Ryberg said...

Kassiane, good post!

I find I use similar visual systems to organize myself - but I hadn't thought of the left to right weekly list. Genius!

In addition, I use an alarm clock app on my phone to remind myself to eat every 2.5 hours and, when I clean, a repeating timer so I spend no more than a few minutes tidying a given room in my house rather than getting stuck in one room and losing track of time.

- Erica.

thethirdglance said...

I have a very similar system, sans velcro... It involves my google calendar (since I am a scientist and am constantly on my computer), a notebook that sits with an attached pencil in my pocket or in my backpack, and a ton of lists posted by my doors and desk reminding me to lock the door behind me, and make sure I have various things when I leave. I also have meals scheduled in my google calendar - because I, too, forget to eat quite a bit.

The one thing I've done really well with this year in "adulting" is going to the grocery store. I good friend of mine doesn't own a car, and I do, (we live in a place where you MUST have a car to get to/from the store), so every week on Friday evenings, we go grocery shopping together. I have always used the grocery list thing, and now that I know the grocery store, I know where everything is, and can, like you, be in and out in 10 minutes. Every few months, we go on a quiet Sunday morning, and walk up and down every single aisle. Then for the next few months, I know where everything is, and for the stuff of interest, what the prices are - my friend loves shopping with me, because I always know where the best deals are. And I like shopping with him, because I have someone to help me not overload. It's a good trade. :)

Savannah Logsdon-Breakstone said...

I want ALL of these.

And I don't grok time either. I almost died my first time on my own because I didn't get adulting done properly because of it- bacteria killing you isn't fun.

theamazinj said...

I really like how you developed your own style for helping yourself remembering things. I almost feel like writing my own post about what works for me and incorporating what you did to help me too. Visual aids do work best for me. Your creative sense of incorporating what was done at Autreat and your style can help others. Good Job!

Going to do something on DMC now!

Peregrine said...

This is very wise and it pleases me that other people do these sorts of things.

I have one A6 Black and Red notebook that lives in my right combat trouser pocket with an Ikea pencil for day to day notifications that then get looked up (if it's a fact or what not) or written into my diary. My diary is a rather large and ungainly, but very useful, red notebook that is just smaller than A4 that lives next to my bed. In this I write up the week sunday to saturday, with a colomn to the right for things to this week, and one at the bottom of the page for ongoing items. There is also an A5 brown notebook for taking extensive notes in at various work type things that then get made into diary dates, typed up notes and work schedules.

At some point I'm going to chalkboard paint my wall so that I can write up reminders of short term things, and probably make posters for longer term stuff.

Also, there is a very small set of shelves next to my bedroom door at eye height for unloading my pockets when I come home - wallet, keys, tobacco, iPod etc, and a money box for loose change. I find this helps a lot.

If I don't do this then things just don't get done and I find it very difficult to keep on top of anything. It's all a bit anal, but I like it.

I have yet to work out a system for keeping my room for becoming a pit of messy despair though...

sanabituranima said...

I am definitely gonna try some of these things. I don't actually know if I'm autistic (I'm awaiting an assessment, but leaning towards "no") but I do have other brain stuff going on that makes adulting very hard.

K Wombles said...

This is a tremendously helpful post! Thank you.

usethebrains godgiveyou said...

What do you mean, you don't grok time?? (Kidding, love the reference. We are ALL strangers in a strange land.)

I must be highly visual; if I don't see it, it doesn't get done. I think that's why there are so may piles around the house. I never used lists until I was 50 years old. It is truly amazing, the difference.

Surene Henderson said...

I ended up in tears when I read this because you have offered solutions to things I struggle with on a daily basis. I have struggled my entire adult life with getting stressed about not remembering things when I leave the apartment. I also hate going to the grocery store and spending what feels like endless hours there because I cannot remember what I need at home. I am now making the list for my door and implementing your other suggestions for groceries. Thanks so much for posting this!

Surene Henderson said...

I ended up in tears when I read this because you have offered solutions to things I struggle with on a daily basis. I have struggled my entire adult life with getting stressed about not remembering things when I leave the apartment. I also hate going to the grocery store and spending what feels like endless hours there because I cannot remember what I need at home. I am now making the list for my door and implementing your other suggestions for groceries. Thanks so much for posting this!

Shell said...

I love this whole idea and system so much! My ADHD brain has never been able to wrap itself around paper planners. Until I read this post it hadn't clicked with me why that was. It's because I am a visual thinker, so 'out of sight, out of mind' is exactly the problem! I see a trip to the craft store for velcro in my immediate future. :)

quarksandquirks said...

Thank you for what is the first system that might actually work for my older son. He's, ahem, organizationally challenged, and paper and electronic systems just don't work for him. We'll be going over this together to see if he thinks it might help.
All of us could benefit from your communication preference chart. That's brilliant! With one kid on the spectrum, one with ADD, and all of us with sensory issues and big introversion, I'm always looking for new ideas to help all of us do our personal best. Your system and explanation are phenomenal.

Thanks!

Simon Peacock said...

Wonderful post. I have ADHD, and love the idea of the board for recurring tasks. http://MungosADHD.com

Carol said...

Not only do I love these ideas for myself and my children, but seeing "grok" used in a sentence (for the first time in years) made my day! Thanks for sharing!

Stimey said...

This is brilliant. Really, really brilliant. I have tried so many organizational systems and haven't been really successful at any of them. Currently, I have a million tiny note cards with to do lists on my desk, which is not really all that effective.

I loved this post so much that I managed to get through the whole thing. I love your words; I love what you write, but it is really painful for me to read white on black. But I squinted through to the end on this one. :)

Jannalou said...

I honestly love it, it's like my system only on the wall instead of in a day planner. (Mine doesn't have all of these things, of course, and it does have some things yours doesn't.)

Brenda Rothman (Mama Be Good) said...

This. Is. Genius. I need all of this. Do you get visually overwhelmed by your abode? Lists, clutter, decorations, art?

roxyhead said...

I think I'm going to have to do the list thing in my new apt. as I'm not going to have a roommate to help keep track of everything - with 2 people, the chances of something tripping someone's "too disgusting to live with" switch and getting done at least approximated a normal slob's schedule. But if I can't see it, like you, it's not there, so I'm gonna get me some Velcro! Out of the house, I carry a ginormous purse, so good on that front, mostly...

roxyhead said...

Oh, and have you ever considered going into business as a consultant? Organization is big business, these days! ;)

chaoticmum said...

I just found your blog today and I'm so glad I did. My son is probably still a bit too young for some of these, but I definitely need all of that!
Brilliant, thank you so much for sharing!

Utter Randomness said...

Awesome! I use post-it notes for some things, but I hadn't thought of making a system like yours. Adulting is tough. I don't know why I can remember thousands of little factoids, but I can't remember to eat three times a day...

roxyhead said...

Hopefully, your ideas will help the absent-minded NTs using the self-checkouts, should they happen to read this new sign I never thought to put up before...
http://instagram.com/p/PJ2S4tCl46/

I think we could also use an "Ordered this week/not ordered this week" velcro board at work, since we're always running out of something, be it garbage bags or toilet paper.

BTW, scrolling on the stripy background is trippy in a not-good way...couldn't see it before as I was posting from my phone.

Melanie said...

Wow, this is fabulous. My own personal exec function is pretty crappy, so remembering to do things with enough time and structure to teach my kid with autism to take care of his own needs is tough to do. Ex. I get him up too late in the mornings for him to make his own lunch, so I do it in a tearing hurry & he doesn't get lunch choice nor learn to do it. Not a good long-term plan for either of us.

I know that if I set up something like this, he will be able to independently "adult" too. And BTW, I love the word "adulting" - I'm forty but still feel like I play at being an adult.

Nora Watts said...

Impressed I do have visual charts but yours are the best! Well the best i have seen. I need to think about what and where i can put a few up. It's hard when one is not supposed to put holes in walls.. not even to hang something but i do have my cabinet doors ( My cabinet, not the landlords) to work with. Thanks again

q said...

Question: On the interaction receptivity poster, are "verbal only," "text only," and "any method" ways that people initiate the interaction with you? Or how they should expect you to reply?

Neurodivergent K said...

q, ways that they initiate with me (or whoever's initial). But that doesn't mean that any conversation has to stay in that modality.

q said...

Okay. I was making my own, and I think it'll mean the way I reply for myself, since I don't care how someone starts the interaction. :P

And rhetorical question here: why is my name showing up as "q"? 0_o

tdotrob said...

Awesome! We used to take down the list on the back of the main door when people were coming over. Eventually we just said "screw it" and leave it up full time. I kept leaving the house without stuff, except that on some of these occasions I went overseas. Without meds. D'oh! On at least one occasion, someone leaving the house saw the list and remembered he'd left his phone in my office.

The other thing I like is the "Remember The Milk" app. Instead of a photo frame, I bought my wife an Android tablet for Christmas a while back and just run the photo frame app on it. So it's always on in the kitchen cycling through photos. But in the background is the RTM app where we keep all sorts of lists. Then if I'm shopping and she adds something to the list, it pops up on my phone while I'm at the store. There's a PC version as well, and it stays synced across all devices, but it never would have worked without smart phones since I pretty much *always* have it with me.

Paul MacDonald said...

Every routine solution I've ever come up with has been negated either by lack of routine or just life. Something like this requires materials, remembering to update them, and forward planning, both of which are easy things to procure, but exactly the sort of thing they're there to remedy. Worth a try, of course, but I can see myself failing. I once tried setting certain times for everything, living my life on a system of alarms and hour-long time slots. All was going well until I had an appointment when I was scheduled to go shopping. Also with my sleep patterns being as random as they are, it's difficult to predict if I'll even be awake when I should be. I have a perfect solution to the 'going out' checklist, though. I keep my keys, bus pass, money, cards, tobacco etc in my pockets. When I change clothes, I transfer it all over, so the result is that everything I need is always on me, and always in its designated pocket. This is why I complained about my new coat. It has fewer pockets than my old one and the pockets are less secure. It's a much better coat, but I struggle with using it as my portable office.

Abbey Terry said...

Expressing extreme admiration for this post.

Lindar said...

Crontab and Tasker have been massively helpful to me. Crontab sends system notifications to all of my computers and Tasker does the same for my phone and Pebble so I don't have a chance to miss my hourly stretch/no-typing break, meal, or sleep reminders. Crontab also manages my Philips Hue light and redshift on my Linux computer (f.lux does its own thing on my Mac) so I have plenty of light conditioning before bed, then shuts off my lights and suspends all of my computers a few minutes before sleep time so I don't have to do anything but turn off my monitors and walk away.

It also automates a word-of-the-day Tumblr I run, which is great because I wouldn't bother with it otherwise (queueing a bunch of posts manually and remembering not to let it run out is a huge hassle). I'm a big fan of automating regular tasks and sincerely believe everyone should learn at least some basic programming for precisely such a thing considering just how necessary computers are and how much more they will become in the next ten years (which is super exciting to me).

If you need any help getting a similar setup, feel free to ping me on this: @lindarthebard

Io said...

These are brilliant! Particularly the weekly and daily tasks thingees. I need those. I'm going to show this post to my ASD aid centre, and also try to (maybe get them to) make me similar ones. Thank you!

Io said...

These are brilliant! Particularly the weekly and daily tasks things. I need those! I'm going to show this post to my ASD aid centre and also try to (maybe get them to) make similar ones. Thank you! :)

lunacodes said...

Thank you So Much for this Blog Post. It helped me make an organizational routine for me that looks like it will actually work :)