Safety hazards.

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I’ve been trying to determine what makes an environment more accessible or inaccessible to autistic people — or at least to me. I just got one clue this morning, when I almost swallowed a medication that I was meant to inhale.

I finally got in to see the asthma doctors I made the appointment for in January during the asthma crisis. They were, by the way, really good, determined a good goal for my peak flows and gave me an asthma plan. They also gave me a new medication called Foradil.

Foradil comes in gelatin capsules like many medications do, filled with a white powder. The difference is that Foradil comes with a strange contraption. You stick the capsule in the contraption. You squeeze the contraption to puncture holes in the capsule. Then you turn the contraption on its side and inhale the Foradil, discarding the capsule when it’s over.

Where the trouble comes in, is that I seem to learn things like this on a different level than most people do.

Most people seem to have little trouble applying a particular way of comprehending the world all the time. If they see Foradil, then unless their cognitive abilities are suddenly compromised in a major way, they know it as Foradil, an inhaled product, because they have put it into that category without even trying. They know that with Foradil, you take the capsule out of the foil wrapper, stick the capsule into the contraption, poke holes in the capsule, and inhale through the mouthpiece of the contraption. They know this because they’re constantly applying the category of Foradil or of inhalable to these things they’re looking at, this is effortless or close to it.

I have to be thinking about it to get to that point. By thinking about it I mean exerting a fair bit of cognitive force behind sustaining the idea of Foradilness. It’s not (as some people seem to imagine it) a matter of learning what Foradil is, it’s a matter of access to that knowledge being in place at the exact time when I’m going to need it.

I don’t learn to do things that way, I learn to do things by actions in response to certain general types of things. If something looks like a pill, the associated action is to swallow it, particularly if the pill is situated in my hand. I am relieved that I no longer have to give my cat pills because of the amount of effort it took to suppress the associated action of swallowing them myself. And it’s effort against a tide that feels totally natural. So it’s even one moment of distraction and I could swallow cat pills. Or in this case an inhaled capsule. Today I got it almost in my mouth before I realized.

I do regularly screw up which inhaler I use (because marking one red and one blue doesn’t change the way they feel in my hand), but that’s less problematic than swallowing a pill meant to be inhaled.

Part of what makes an environment inaccessible to me — in the most extreme sense — is that things in it are set up (such as pills that should not be swallowed, or drinking cups used to hold toxic or noxious substances) so that an automatic reaction to my environment (without engaging abstraction enough to check things like that) could put me in danger. A more accessible environment to me (and I suspect this is more accessible to most people, too, and just happens to be more extreme for me in the dangers of it not being this way) is one that promotes automatic reactions that I should be taking and discourages automatic reactions that I shouldn’t be taking.

For instance, my apartment has all one sort of flooring — tile. My last apartment had alternations between tile and rug that made it hard for me to get around. This one little change has made me more capable of using the refrigerator, microwave, and toilet even on foot. I also have clear locations for different activities, which allows me to associate different sets of actions with different parts of my apartment. Things like the computer and bed are out in the open so it is easy to get to and from them. But it is not particularly easy to get out a window.

These things also have to take place in the absence of signs. Here’s some illustrations I once did of the assorted fun variations words can take:

The actual text:

This is how it would be read by most people:

The words that are here, should be readable by anyone who can read.

Unrecognizable letters

This is where I can tell it’s letters and am processing them as symbols, but don’t actually decode the letters. (They do not, for me, actually turn into such seemingly hieroglyphic characters, I was just picking a collection of things that are both clearly symbols and not readable to most people.)

clearly symbols but not decodable

Nonsense letters

This is where I can pick out the letters but they clearly don’t really conform into words in my mind.

wcism giowieu hdnv tzd ajrtujs py mswpyxr kjl rqnspifrs dlc xcr tlng

Unrecognizable words

This is them looking like real words that I can sound out and everything but I don’t get any meaning out of the words even if it sometimes feels like I should.

Garts pollow hend kig, prewked in trelning and poniance ler the vock.

Part of a letter

This is a small part of a letter, I wanted to do an animated version sort of scoping around the letters but I didn’t. I could get wrapped up in the aesthetics of this curve for ages.

a small part of a letter

One by one, in order.

This is meant to be like reading one letter at a time, but the letters at least staying in order so there’s a relatively high chance of following at least a little of it with a lot of concentration.

the letters to the original statement going by one by one, but in order

One by one, scrambled order.

This is meant to be like reading one letter at a time, but not retaining the order too well.

the letters to the original statement going by one by one, in nearly random order

Squiggles

This is when the forms of the letters are visible as squiggles but not as a readily recognizable set of symbols of any kind.

White background with black and grey squiggles on it

And none of that even gets into the sort of stuff that Helen Irlen and Alison Hale and stuff have written about with perceptions text, this is other stuff besides that. (And yes I already wear colored glasses.)

If I put a sign up, it’s generally squiggles until deliberately focused on. Sometimes it can be some of the others, but mostly squiggles. Signs have never worked all that well for me because of this exact problem, they simply aren’t read without conscious application of cognitive force, and you have to know they’re there before you apply that force. If I know they’re a sign I’ll probably read them (for form if not for meaning), but I have to know they’re a sign first.

Rather than signs it’s far more effective to put in various environmental cues that lead me towards some things and away from others. But what the best way to implement that is, especially in the matter of something like Foradil, is a mystery to me at times.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

33 responses »

  1. Have you tried making videos for yourself as reminders? You are quite skillfull at that.

    Also, maybe tactile modifications rather than visuals would be better if your perception changes. Ex, instead of color coding, use textures. For instance, coins have different sizes and textures on the edges so that the visually impaired know what monetary amount they have. Or, money is folded in certain ways, so they can tell 5s from 20s.

  2. Videos only work if you play them. The motion does help, but can still be backgrounded (as can any sensation).

    Tactile modifications do tend to be more useful, although they only go so far. I can’t modify the capsules themselves. But I could modify something about the package they’re in. At that point, that would draw my attention back to what they’re really for, but if between grabbing the package and getting the capsule out my attention was diverted it would become a problem again.

    I suppose what I really need is an environment that caters to human instinct patterns rather than human abstraction patterns.

  3. That reminded me of the sign in the Botanical gardens next to the Braille plaque that says “WARNING! THIS PLAQUE BECOMES EXTREMELY HOT IN SUNLIGHT.”

    For the record, it’s generally much safer to swallow something you’re supposed to inhale than it is to inhale something you’re supposed to swallow.

  4. You could try putting the swallowable pills near a glass & water source so they’re easy to swallow, whereas you keep the inhaled pills right beside the inhaler, far from water or glasses.

  5. Do signs with pictures rather than words help you? For example, if you had a picture of the contraption you use for the inhaled medicine on the pill container, would you notice that picture when you went to get your medication? or as another poster said, putting the inhaler and the pills together?

    I believe that I would remember to inahle the floradil just because it is such a weird delivery system..I need to check antibiotics and things when I have prescriptions, because various pills have different schedules of delivery…I remember to take them orally but not when. however, for a medication that is given in a novel form, i would remember simply because it would be like nothing i have ever seen before.

  6. Luai had a good idea, how about put a cup for water in a transparent bag for pills you take by mouth, and the inhaler in the bag with pills you take by inhaler.

    You could also color code containers with pills you take by mouth, and only use a cup of that color to take pills by mouth with.

  7. At first I was thinking of a picture, but then wondered if that would come through clear to you or not. I like the above mentioned idea of the ziplock bags, one holding cup with pills by mouth and one holding inhaler and pills. I am hoping that this will work for you. I really appreciated the diagrams and link you provided on how text is perceived. Have the tinted lenses helped you at all?

  8. When I first started learning to drive a car I did something similar with the floor transistions. After screwing up the parallel parking, I panicked at one point with the driver’s-ed teacher and stopped the car at a crosswalk in the middle of a street with no stopsigns. Oh, I’m not supposed to stop at every crosswalk line??

    I assume you watch only the floor directly in front of you when you walk, which would explain why the edge transistions are so hard. If you’re so intently focused on that edge immediately in front of you, you cannot easily see beyond it that there is a path ahead.

    Can you walk without looking straight down and watching your feet? Can you look far ahead into the distance while walking forward, without tripping? Have you tried walking on a flat lawn with your eyes closed?

    If visual barriers seem to be so restrictive I wonder if a small diffused coloring strip, tiles, or rug between flooring types would help make the edges easier to deal with.

    For example let’s say you have a dark brown carpeted room next to a light wood floor. Put down a color-transistion strip that gradually and smoothly changes from wood-color to carpet-color:

    This way the flooring may not need to be all ripped out to make it all visually uniform, and the strip visually softens the edge transistions. It’d probably not need to be very large, perhaps the size of a typical door welcome mat.

  9. (I tried to include a link to a small image demonstrating the floor color transistion, but it didn’t show up in the comment. I will try to post it again, as a raw non-HTML URL..)

  10. You mentioned tactile reminders as somewhat (albeit not completely) helpful. Would it help to maybe attach something like, let’s say, a button onto containers of medications that you swallow; a paper clip onto containers of medications that you inhale; a small piece of cloth with a memorable texture onto containers of medications for the cat, and so forth (or whatever tactile devices would work) — so you feel the button (or clip or cloth) as you pick up the container to help remind yourself of what to do.

    That wouldn’t solve the problem of what to do if you get distracted between picking up the container and getting the capsule out, but it’d be one step. (Maybe also follow a color code — blue button, yellow paper clip, brown cloth or whatever, as one more layer of cues)

    To resolve the distraction issue, maybe try this: when you pick up the container with the button on it, train yourself to also pick up a loose button (maybe tie the button to dental floss and tape the other end of the dental floss to the same shelf where you have the container or something, to help keep the button right where the container is) — keep the button in your hand while you open the container and put the pills in your hand etc etc and don’t put down the button until you have finished swallowing or inhaling the pills (or giving them to the cat). The idea being that feeling the button in your hand the entire time would help cue you that “This medication is for me to swallow” or “this medication is for me to inhale” or whatever.

    The obvious downside is that this involves adding more steps to the entire process (I’m remembering your “making a phone call in 70 easy steps” post here :-) ) and also involves re-training yourself to add those steps to the process. Plus, the button (or whatever device) could eventually become “background” so it doesn’t work any more. And I imagine there are other downsides I’m missing.

  11. Wikipedia has an article on Foradil (generic name Formoterol) and says it is also available as a metered-dose inhaler, the type where you just push down on the top and breathe in. You should ask to get the metered-dose inhaler type so you don’t have to deal with the pills, though you may have to use the generic form of the drug to do this.

    http://en.wikipedia.org/wiki/Formoterol

    Also you say colors don’t help because it doesn’t change the feel of it in your hand. So put some stick-on velcro-fastener strips or discs on the inhalers. This would change the hand-feel for up to three inhalers with the same shape:

    no velcro (smooth), soft-fluffy velcro, picky velcro

  12. I’ve been thinking about this velcro idea some more. I see this Foradil is only meant to be used twice a day on a regular schedule, while the other inhaler is used whenever you need it.

    Since the soft velcro would feel nicer in your hand, you could put that on the frequently used inhaler. Reach for the soft fuzzy one when you’re having a sudden asthma attack.

    The picky velcro may make the Foradil inhaler annoying and slightly uncomfortable to hold, and so would distinguish it as the one you don’t want to hold if you’re having a sudden asthma attack.

    This way you only need to label the inhalers with stick-on Velcro strips the first time you get the inhalers, and then after that the inhaler usage can be an automatic routine based on touch.

    The only possible problem I can see, is that your caregivers would need to know that your inhalers are “tactilely labeled” this way, so they don’t peel the velcro off wondering why you put it on there…

  13. Maybe a container with a different means of opening — i.e. a plastic snap-lid box. The idea being the different physical hand motions required to get a pill out & the way it would be in your hand when you did. Regular pill container => shake out a pill into open palm, pill box => having to pick a pill out with 2 fingers. Or something like that.

    I’m a klutz, so I’d be dropping pills constantly, so don’t know if that’d be a realistic option.

  14. ok now i see why you can’t just write yourself post-its about things. i am curious, as was someone above, if pictures take the same effort to decode (sometimes). i think you told me once but i can’t remember. i imagine even with a picture it might be that you have to look at it and realize it’s a message, etc. (??)

    i was thinking you could stick band-aids on things, to give a texture clue. but velcro is interesting too.

    does the texture have to have an intuitive relation to the thing that you need to be reminded of, or can you train yourself into associations, like andreashettle was saying?

    i ask because i don’t know that it would be easy to train myself into something like that and remember it, but then… i seem to be opposite to you with automatic movement. i seem to have great difficultly learning automatic movement patterns, and no matter how many times i do a thing i can still lose the automatic pattern and get stuck. if i can think about it, i will figure out what to do next. but depending on automatic stuff, i can usually get lost or mess up. this is why i was always afraid to work in a factory: i figured i would just be so BAD at it, that i would be miserable, then fired. this is odd to me, because i do like repetition of certain things. i don’t mind, for example, hearing the same CD a hundred times (if i like it) or making only one kind of origami box over and over.

  15. PS: i just remembered that when i used to have a car that didn’t play a sound to remind you to turn your lights off, i always used to run down the battery becos of forgetting to turn the lights off, and leaving it all day. so a sign got put on the dashboard about this. but after a while i stopped seeing the sign becos it was just there every day and eventually i tuned it out. so then, i would forget again…

    i wonder is this *like* or *not like* how you would not notice that a sign is a sign? although yours is not a question of getting used to seeing it there, so maybe it’s different. (???)

    sorry to be so curious.
    this post was making me think about thinking…
    meta-meta (*_*)
    (or “meow meow blah blah” as trk would say)

  16. I put a chicken in the oven and simply walked off and forgot about it. Lucky for me it was on a lower heat. Finally my dog came and got me in a state of alarm (Charlie-not me). I follow him into the kitchen and pull the absolutely dyhydrated chicken from the oven. I also recently put beans in my crock pot and did not turn the heat on….I eventually wondered why there was no steam in the lid.

    I can’t hear those timer thingys either…..

    ah well.

  17. n.,
    I have the same problem with “not seeing” things like notes to myself to take vitamin B12 or whatever, because these things are ALWAYS there. Or sometimes it WILL start to dawn on me in a vague way that I have a note on my computeer screen that I should probably make myself look at, then I’ll realize that it relates to something I was working on weeks or even MONTHS ago that I’ve long since finished. *sigh*

    And people think that all us folk with attention deficit disorder have to do is WRITE NOTES TO OURSELVES. (Okay. Not really. What people think we ought to do is “Just pay attention” or “Just remember to do it.”)

    I can get automated movements, though — I don’t think they get nearly so entrenched with me as they do with Amanda, but sometimes if I get distracted I start moving on autopilot. I can’t begin to count the number of times I went to the wrong metro stop in the subway system and had to backtrack several stops because I was moving too much on autopilot. And then sometimes I move on autopilot AGAIN and have to backtrack AGAIN!

  18. Rosemary: The tinted lenses do help me a great deal. They make my migraines less nasty, objects fit together more clearly and with less distortion, better automatic depth perception (don’t have to concentrate on aligning my eyes), and somewhat better reading (although unlike a lot of people, reading isn’t the main reason I got them). I use them so often I’ve forgotten where my pair of untinted glasses went.

  19. Glad to hear that the tinted lenses do some good with your migraines and depth perception. It seems like such a simple thing, but they can work wonders. I have used the tinted, plastic-overlays for some of my students for help with reading.

  20. I have an older brother who is termed to have “autistic tendencies”. When he and I were kids, he wanted to open the door to his room himself, but didn’t like to touch the doorknob. My parents didn’t know how to teach him that he could do it, but I figured out that it was the texture he didn’t like. I glued a couple of beads to the doorknob, and he liked the feel of them and used the door perfectly well ever after. Your story about your inhalers made me remember this. Thank you.

  21. Sorry for using this comment space, but I don’t know how else to contact you. Just wanted to let you know that it was me who managed to accidentally delete the main part of the ALF workshops up in the air in Second Life (if I haven’t figured out how to undo it by the next time you log on). I’m *really* sorry, and don’t have a clue what to do now. :-(

  22. I was talking to someone who’d been round a specialist autism school, and what they were most impressed with was the architecture. Everything was obvious – the carpets, the walls etc led you from place to place, it was obvious that this room was for eating, this room was for lecturing etc. It seems that they were using the sort of automatic reactions that you’re talking about. The group of NTs who were going round utterly loved the building, for those sorts of reasons – an accessible building is just good for everyone.

    I was reminded how much I as an ‘able-bodied’ person like accessible buses when I had to struggle on to an inacessible one with a few bags of shopping – the lack of steps, the extra space in front and so on are useful for everybody. I don’t think most ‘normals’ really appreciate that an accessible environment often benefits everybody.

  23. M

    This relates to the idea of “universal design” — i.e., design that is accessible for people with various types of disabilities but is meant for EVERYONE to use. (Like a curb cut that is also used by parents with baby carriages, or people with luggage carts.) Most of the time “universal design” seems to simply mean, accessible for people with mobility impairments with a few extras like Braille signs for blind people and strobe light alarms for deaf/Deaf and hard of hearing people. But it’s nice to hear that in at least one place they apparently took a look at what really makes an environment work for autistic people. And there are a few places, like at Gallaudet University, where they are starting to take a serious look at what makes an environment really work for Deaf people, such as more open spaces so that Deaf people can see each other and sign with each other over larger distances within the building, etc. But these kind of concepts (whether for autistics, or deaf/Deaf people etc) don’t seem to have really caught on yet in most universal design. I think the “universal design” movement is still emerging, and still has a lot to learn about people with disabilities other than mobility impairments.

    M, since this is a topic that seems to interest you, you might want to google the term “universal design” and browse a bit.

  24. Imlen, i have deleted bits of ALF at times, too, so… well i won’t say you are in good company, but at least you are in some company!

  25. Did the doctors say anything about your pets contributing to the asthma? I know you mentioned before that your other doctor had suggested you remove them from your home. Hopefully these doctors were more understanding.

  26. The first part of the post reminded me of an incident on a camping trip — someone had poured bacon grease into a drinking cup, saving it for some reason or another, and no less than 3 people just picked up the cup thinking to drink from it. Even when it was in a spot picked as “no one will pick it up to drink from it here“. It was tossed in the end, with a couple of people unhappy because they had wanted to use it for cooking later that trip.

    (What I couldn’t figure out is why they couldn’t transfer it to some other sort of container after the first mistaken taste, but I wasn’t in an asking sort of mind that day, more just observe-and-be.)

  27. This is very poor design by the manufacturer of Foradil, which could cause anyone to make a mistake. Why the hell would they choose a pill shape, which EVERYONE is conditioned to swallow, for a medication which is meant to be inhaled? That’s just asking for trouble. If/when someone else makes that mistake and if they are harmed by it, the manufacturer will probably be sued.

    There are a lot of things in this world that people try to use, and mess up, and end up feeling stupid, when it is poor design of the thing itself that causes the mis-use. Don’t blame yourself for others’ stupidity.

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  29. I agree with you and prior commenters — making something look like a pill, when it’s not meant to be swallowed, is just stupid, and even NT’s are likely to get burnt by that.

    I form “automatic behaviors” and habits easily too. (Being a computer geek, I call them “wetware macros”.) Occasionally, I’ve gotten errors embedded in those macros, like trying the wrong key for a particular lock before using the right one. (I do try to avoid this, but you probably know how that goes.)

  30. Pingback: Ballastexistenz » Post Topic » Don’t just hand me things.

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