Using visual supports as an autistic adult: a review

[Content warning: dental]

Recently I created a lot more visual supports for myself, including some picture schedules. Although I often favor text, I’ve realized from my experience with AAC that symbols can actually be helpful for me, and now I’ve seen the benefit of using detailed picture instructions with my support staff in order to follow recipes, I thought it was worth trying to apply to other aspects of life too.

Background: I’ve tried and abandoned various planners and to do list systems over the years. Google Calendar is probably the thing I’ve stuck with longest, and if they had a way to integrate pictures I might have stayed high tech. But I love not just visual tools but tangible tools for coping with executive dysfunction, so I wanted to make hard copy supports. Plus, I’m less likely to remember to go into a certain folder on my device to open up a picture schedule compared to having it physically sitting next to me on the couch where I’ll see it no matter what. I was hoping visual supports could help with various aspects of my executive dysfunction: regularly skipping repetitive self care tasks (looking at you, morning meds), stalling every night when it was time to begin my bedtime routine (inevitably tweeting “GO TO BED E*” in inertia-mired desperation), trouble initiating certain irregular tasks (why is it that plugging in and turning on the printer takes so much effort?), and endless other examples. And like many autistics, I just thrive on structure and knowing what to expect. Mental health professionals often think this means I should go back to work or school or getting out of the house more to provide external structure, but they miss the point – I can create a structured life for myself without attempting high-spoons activities that I know I can’t sustain without ending up in autistic burnout and/or a bipolar episode. Just having a plan for my quiet life and knowing what to expect around the house on any given day is much more useful than trying to accomplish a heavy load of hard things that wear me down beyond repair.

But visual supports are just for kids, right? a voice nagged at the back of my head. No, no: they’re not. Disabled people grow up! Our needs may change over time but many of us still appreciate visual text and/or pictures to support our learning, focus, and communication. Some of us prefer photographic imagery over symbols, or we may want to use words only – and the content of our schedules and routines may be very different than a child’s – but that doesn’t mean we don’t need or want visuals. Executive dysfunction doesn’t magically go away when we leave school or move into our own place – in fact, for many of us we might need this kind of support more as an adult due to new work/living environments, increased demands on our cognitive load, decreased interpersonal supports, and/or the built-up effects of autistic burnout. The idea that picture schedules and other visual supports are only meant for children actively discourages disabled adults from accessing tools they need. It’s the fact that I’ve been part of a positive autistic community for a while now, a community that fights the stigma around using any needed supports across the lifespan, that got me to the place where I could ditch the internalized ableism around this and go ahead and create these tools for myself.

Before I go further, I want to take a minute to point out a few situations in which I hope you won’t use visual supports like these. 1) Don’t use visual supports to convince or train a disabled person to do something they don’t want to do, even if it’s what you think is best for them. 2) Don’t use visual supports to convince or train yourself to do something that overall impacts you negatively. (A couple examples to make it clear what I mean: you might not want to brush your teeth but still find the net effect on your well-being positive, whereas you might want to keep the house spotless but find the net effect on your well-being negative – in that case, go for it with the toothbrushing but please don’t use these ideas to get yourself to keep the house spotless, it’s not worth it.)

My process: I’d looked at premade visual schedules and sets of picture communication cards online and considered purchasing, but decided to make my own instead. I was able to customize the available options for each schedule (including many more adult type tasks than is easy to find in premade sets online), use symbols I’m already familiar with from my AAC app, use typefaces I can read more comfortably, and spend less money on supplies for more total supports. Before starting, I did a giant brainstorm of what kinds of supports would be helpful for me (for example, a “morning routine” checklist) and what items each one would need to contain (for example, “meds” and “wash face”). I let those lists marinate for a few days so I could gradually add items I’d forgotten. Then I screenshotted the relevant buttons for each item from my symbols-based AAC app (Proloquo2Go), in some cases temporarily editing that button’s label to more closely match my intention for the visual support usage. I used those symbols for all my supports except for my kitchen inventory – for that one I used pictures of the actual brands I tend to buy screenshotted from my local grocery store’s website. I inserted all these images into the Google doc I’d brainstormed items into, and played around with sizing before printing. After cutting out each item I “laminated” them with packing tape, and did the same to the backing pieces of cardboard most of my supports were destined to lay on. I then attached adhesive velcro dots to the back of each item, and placed opposite pieces of velcro to the various backing pieces for each support (or in the case of my shopping list directly onto my fridge, landlord be damned). I added envelopes to hold loose items not currently in use, and the morning and evening routine boards have loops of yarn at the top so they can hang around my neck until I’ve completed everything. The leaving-the-house checklist didn’t require so much crafting; I just taped the printed out list on a single sheet onto the back of my front door.

Images, text descriptions, and notes on individual items:

Image description: a piece of cardboard hanging from yarn labeled “morning routine” has two columns marked “to do” and “done”. “To do” contains a set of empty velcro dots, while “done” contains velcro dots with symbols and words attached to each. Items included are: coffee, dress, wash face, deodorant, glasses, hearing aids, medicine, October [cat], breakfast, brush teeth, and mouthwash.

Notes on morning routine: I keep these in a rough suggested order from top to bottom starting on the left column and continuing on the right, but don’t necessarily complete them in the set order. It’s nice to be able to move them onto the “done” side individually so that I always know what’s left no matter what order I’ve proceeded in.

Image description: a piece of cardboard hanging from a loop of yarn labeled “bedtime routine” has two columns marked “to do” and “done”. “Done” contains a set of empty velcro dots, while “to do” contains velcro dots with symbols and words attached to each. Items included are: tomorrow’s schedule, plug devices in, hearing aids, pajamas, medicine, October [cat], brush teeth, mouthwash, and glasses.

Notes on bedtime routine: As with morning routine. Both are on loops of yarn so that I can wear them around my neck until everything’s complete. This prevents me from having to continually walk back to a section of wall or counter in a certain part of the house between each step, and makes it harder to get distracted and abandon the routine partway through.

Image description: a foldable piece of cardboard has sections labeled “today” and “maybe” containing velcro dots, and an envelope labeled “another day”. Currently visible under “today” are moveable velcro dots attached to pictures and words for walk, sign language, blog, video chat, Twitter chat, recipe, and Etsy. Currently visible under “maybe” are pictures and words for yoga, audio book, wizard rock, and modding.

Notes on day to day schedule: Every evening I pull up my Google calendar as a reference and remove all the possible items from schedule and envelope, sorting into piles for the following day. After returning any irrelevant items to “another day”, I place the “today” and “maybe items” to the bottom/right of each section so that I can move them to the top/left as they are completed. The gap in between tells me where I’ve left off and makes it easier to sort the following evening because I can see what’s been left undone. In total I made about 25 items that frequently repeat during my average week or month but don’t fit into a every-single-day routine like for mornings and evenings. Activities include various carer appointments, visits from my support staff, errands, hobbies, self care, and more.

Image description: a piece of cardboard labeled “PCA time” has a short list of velcro dots. Currently displayed items are: oatmeal, beans, counters/sink, and prep a recipe.

Notes on PCA agenda: Like the day to day schedule, I initially place the agenda for me and my support staff at the bottom of the short list so we can move them up to the top as they are completed. A small envelope (not pictured) below the chart contains other tasks we do frequently but not that day. This visual support that’s tacked to the kitchen wall doubles as AAC, because I can point to it when needed rather than finding the word on my device or signing.

Image description: A white freezer has a line demarking two sections labeled “have plenty” and “need more” with several dozen velcro dots under each. About forty food items and household items are attached across the two categories, displaying a photographic image and large text for each.

Notes on kitchen inventory: This list continues down the fridge, but the photograph above gives you the basic idea. Not currently pictured are additional non-food items I regularly need to restock such as soap and toilet paper. If I’m struggling to think of what to eat, a glance at the “have plenty” side tells me what I own without having to dig through fridge and cupboards, and as I run out of each ingredient I can move it to the “need more” side – the latter of which can then be photographed just before leaving for the store as an instant, bad-handwriting-free shopping list that incorporates pictures.

Image description: a single sheet of paper is attached to a wooden background with masking tape, labeled “Leaving the house? Bring these things!” Below the heading are two columns of symbols and words for the following items: mask, wallet, keys, phone, hat, weather gear, sunscreen, Ipad, speaker, HA batteries, letterboards, chargers, caffeine, food, water, AAC bracelets, and stim toys.

Notes on leaving-the-house checklist: I didn’t bother attaching these items to moveable velcro dots because I don’t necessarily need every one of these items every single time I leave the house. Instead, I put them in rough order (top to bottom on the left and then continuing on the right) of how likely it is I will need each thing for any given time I exit the apartment – for example, I need mask, wallet, and keys just to take out the trash or walk to the corner store, but might not need to bring a backpack with a lot of the latter items unless I’m actually taking a longer adventure that day on transit.

Results so far:

• I don’t always actually physically move every single item into the done category when I’m at completion of the end of the routines lists, but it definitely helps me not get lost in the middle, and having them hanging around my neck is also definitely making it harder to get lost in the middle
• It does seem like I’m less likely to stall on bedtime now; at least the frequency of my “GO TO BED E*” tweets has decreased, which I imagine my followers appreciate. I have often been starting my routine ahead of my mental deadline rather than scrolling Twitter endlessly long past when I intended to move on.
• That said, if I haven’t left the bedtime routine support actually within reaching distance of the couch (where I’m almost always sitting when it’s time to get ready for bed), it does nothing to help with inertia. Turns out standing up and crossing the room to pick up the schedule takes just as much cognitive effort as standing up and crossing the room to begin the actual routine – who would have guessed? – so the less-stalling effect only happens if I’ve left the schedule nearby.
• The morning routine isn’t as smooth-going as bedtime, which seems to be because some of the things I only do every other day – that therefore aren’t worked into the morning visual support – have to happen in between morning routine items. (Ie shower before dressing, yoga before putting on hearing aids, etc.) So I might start the morning routine when I first wake up but then I set it down partway through to accomplish those irregular tasks, and it ends up being an hour or two before I actually complete everything. I also am liable to get out Animal Crossing halfway through and get distracted by that for awhile, oops. But it does seem like I’m more likely to eventually actually complete all the morning routine tasks than I used to be, so I do think the new support is still helping.
• For the day to day schedule, I’m finding that if I change my mind and decide to skip something I meant to do under the “today” section, it can be hard to transition on to the next item. After some trial and error it seems like moving the skipped item down to the “maybe” section or even out of sight to the “another day” envelope is a suitable hack to get me over that AUGH-CHANGE-OF-PLANS cognitive barrier. But as always is true for me, it remains much easier for me to not do something I planned for a given day than to add something that I didn’t have in my brain as a possibility the night before. I think this is just a default quirk of my brain that the presence of picture schedules doesn’t seem to impact one way or the other.
• There’s only so many empty velcro dots on the day to day schedule, so it’s harder to overbook myself spoons-wise!
• I’m already noticing some important items I’m wanting to add to the day to day schedule, the PCA agenda, and the kitchen inventory, so I’ll probably do another printing-laminating session eventually to fill in the gaps.
• I hadn’t been sure how many adhesive velcro dots to order, but a set of 250 was enough for this set of supports. I think the “laminating” process took less than one big roll of packing tape, which is much cheaper than actually laminating this much paper at the FedEx store.
• Cooking isn’t easy for me (although having a support staff and detailed picture instructions have happily moved it up from “impossible” to “not easy”), so I’ve sometimes been forgetting to pay attention whether I’m getting low on an ingredient as we’re partway through a recipe. But having a support person here means there’s someone to remind me to move the item to the “need more” section of the fridge, so I don’t think I’ve actually completely missed anything yet.

My recommendations:

1. While prepurchased sets of picture schedules or other visual supports might be convenient to just click “buy” on, if you do have the time and supplies, individualized homemade supports might be much more useful.
2. Do use symbols the user is already familiar with, or photographs of the actual items they’re used to.
3. Consider what typeface you’re using if you’re including text – size, spacing, contrast, dyslexic friendly fonts, etc can all impact how usable a visual support is.
4. Consider portability of each visual support, or if they’re not portable, exactly where they’re going to be placed in your home. This can significantly affect how easy it is to follow through on each task.
5. Assume you’ll need to add more items to your supports after a few weeks or months of trialling your original plans. Keep a notepad nearby where you can jot down missing items as you think of them. Like choosing what vocabulary to choose for an AAC device, it’s just hard to predict all the details of what you’ll need without actually trying it out for a while.
6. Most importantly: Involve the user in intent, design, and implementation as much as possible! Don’t reward or punish someone based on whether or not they use the visual support, and don’t trade rewards or stickers or whatever for completed tasks. Visual supports should be optional tools for people who are dissatisfied with the way executive dysfunction affects their own goals, not a method of training a disabled person to do what you want.

Thanks for reading such a detailed post! I hope it was helpful for you or someone you love. If you have something to add based on your own experience with visual supports, please post a comment below.