Think about it. What do most humans want from a new home?
Big welcoming entrance.
All to entertain & impress guests. For everything else… they invented tool sheds… and storage units.
Honestly…? Autistic-as-fuck-dot-me has different priorities. Which is why you won’t find much discussion of autistic living in Better Homes & Gardens…
Johnny Profane Âû – Blogger. Podcaster. Pretend Rock Star. #ActuallyAutistic. On Twitter at @johnnyprofane1. An earlier version of this article appeared on [AutisticAF.me](https://autisticaf.me/2022/05/12/designing-my-home-around-adult-autism-pt-1-making-it-work-for-me/). Also as a [podcast](https://autisticaf.me/2022/05/12/designing-my-home-around-adult-autism-pt-1-making-it-work-for-me/) & [captioned video](https://www.youtube.com/watch?v=tHug5TjTvNY).
If you’re autistic, love one, work with some… can’t figure out if you are one…
Or live with the challenges of any other disability..
You really, really need to think about where you live…
Because finally learning to create a place of safety, peace, and passionate work… Did more than keep me out of psych wards.
It kept me alive. No joke.
Here’s how I cripped my home. To work for my needs…
Your needs…? Your solutions…? Will be different. But here’s some ideas… to get ya started.
Nothing captures human life like a story. So let’s start there…
“DAMN it.” My big toe smarts…
More wail than shout, “WHO… left the scales in the middle of the bathroom floor?!”
“They’re not in the middle of the floor,” my wife says quietly behind me…
So I jump. Hitting the bastards again.
“If you need your slippers, they’re next to your bed, hon…” Patient. She’s always… patient.
I love my wife, I love my wife, I do, I do, I do… I love my wife…
This is one reason I live alone. And design my home around my autism.
As an autist, I’m challenged…
body, and above all…
I give a LOTTA details, so here’s the short TL;DR, too-long-didn’t-read:
I’ve learned to improve those challenges by
grouping objects in containers,
memorizing “cognitive maps,”
designing for efficiency…
and asking for support from loved ones.
See, there are a few things you should know right off.
My ability to function varies wildly.
That’s why it’s hard for me to stick with… any… “system.” Even ones that help me a lot. So, as I explain below, my wife gives me weekly support. Or everything falls apart.
Also, sometimes I’m tuned into my surroundings. Sometimes I’m lost on Cloud 9.
For instance, like some autists, I wake up slow. As in, it can take hours for me to stop bumping into stuff. OR… have any freaking clue what’s going on around me…
Pros seem to make up an ugly medical term for every quirk of mine. This one… “confusional arousal” or “sleep drunkenness.” My personal fave… Like many autists I have awareness difficulties. Waking, dreaming, sleeping…
Then there are attention deficits… and balance problems. You can see why…
I have trouble negotiating 3D space.
So getting back to my opening story…
I head to the kitchen to make coffee… which can speed up clearing my head.
Down the long, narrow corridor… trailing my left fingers against the wall. To keep my balance.
Through the living room… Briefly touching my keyboard, a chair, and my work table.
Into the kitchen itself… Touching the table, grabbing the oven handle.
Here I’m using “cruising” as a survival strategy… as some autists do. Maintaining my balance… and frankly, my attention as well. By making sure every room has solid surfaces that I can touch as I go through. (I’m likely an undiagnosed “dyspraxic.” I’m definitely an adult “clumsy kid.”)
I click a burner on high. Turn to my coffee nook beside it. Grab my pour-over pot, a filter…
Then reach right into the door of the fridge. My Bustelo espresso and half-and-half await me.
Step two steps to the right, flick the water filter switch, fill the teapot.
Step two steps to the left and plop the pot down. Then stare off into space…. waiting for the water to just hiss…
I create routines whenever I can.
They save mental energy. Like they say, saving more “spoons” for important stuff. (Now’s a good time for the classic essay on disability, “The Spoon Theory,” if you haven’t read it already.)
Simple frustrations can stop me from achieving even simple goals…
So I arrange my entire home in “Nooks.” Places where I can find all the tools, resources, space, and furniture I need for each project.
No confusion. No lost time searching. No re-arranging furniture.
One single-purpose nook for each interest…
In my 10×12 kitchen, nooks for
– baking and pickling,
– pub table for eating & work projects.
In my 12 x 12 “living room”…
– band room for playing & writing music,
– doggie den,
– two-seater “home theater.”
My 8×10 “office”…
– vlogging set,
– tool bench.
My 10×12 bedroom…
– yoga studio,
– dressing area.
All in less than 700 square trailer feet.
Outdoors, I have nooks for firepit, container gardening, tools, recycling, a compost pile. Oh, and a maze for the grandkids. I mowed a small hayfield in circles. Added ornamental grasses, flowers…
Decisions are hard for me… demanding colossal energy.
Took me a lifetime to realize it. I actually ran a magazine, an ad agency, and coupla nonprofits. With a LOT of staff support. And reducing everything to routine, flowcharts, 3-item lists.
At one time, I prided myself on my “quick” decision-making. Truth is, I did everything I could to avoid decisions. My “quick” decisions were mostly impulsive. They may have reduced my executive-function anxiety… But frequently, with poor results.
In retired life, without support staff, this is becoming more clear to me.
I walk to the front door… Call Buddy, take him out on the porch, put him on his cable. Head back in.
I love living things. Pets. Plants. Yeast. I surround myself with them. 3 cats. A Pit-Chihuahua dog. Vines & plants in every room. An entire fermentation nook for my living food.
Because I can’t predict shutdowns or decompensations, I automate the care of my loved ones. When I can.
I try to walk my dog every day… but make sure he has long cables from my two exit doors. That way I can let him out… when I can’t go outside my door.
I automate watering my plants. For when I forget them for a few days.
Yeast and fermented pickles?
Yeast and fermented pickles… Well… sometimes the lower life forms get tossed. I set up routines for demanding living things. But some days I can’t process any list, schedule, or phone alarm.
So I can’t count the number of times I’ve restarted my damn sourdough starter….
I sip my coffee… and pretend to glance at the colored index cards on my corkboard…
The good news? I have found… after decades of trial and error… the best organizational system for me.
The bad news? Not that bad, really.
I need a little help to make it work.
No system helps me all THAT much… without modest outside support…
A loved one or caseworker…
“Letting me do it myself”… when I can.
Helping me focus and overcome inertia… when I need it.
Lending me energy to restart the process… after I completely lose it for a while. Again.
Works like a champ for me with a little care & concern.
I tried paper planners. Personal digital assistants (PDAs). Elaborate todo computer apps. Getting Things Done™… trademark, all that good stuff… Electronic calendars…
If I can’t see it… I forget it. Soon… it doesn’t exist for me.
If I can’t touch it… I don’t really understand it. Soon… it doesn’t exist for me.
Food pantry items stored behind doors? I almost immediately forget they’re there. End up buying them over and over.
I mean, I’ve got more cans of canned milk… Why do they can milk, anyway…? For when I forget to buy half & half….
Notes, calendars, alarms stored on my phone or computer desktop? I forget them immediately. And then ignore them even faster when they do go off…
Cuz there’s always something more important to do.
My best system: Low-tech, colored index cards. On a corkboard. With big wooden pins.
I can see them.
I don’t have to read them to know what they’re about. Color tells me everything.
I love moving them around and organizing them.
I remember them.
Touching them, physically writing on them… vastly improves the chances I’ll use them.
I can’t process any list longer than 3 items. I’ve said it 3 times now.
So… nix to long, written to-do lists. Spreadsheets. Detailed calendars. Etc, etc, etc…
I can create them okay. It’s not that kind of cognitive impairment. I understand them well. I’ve always created usable lists and forms for employees, for instance.
But using them? My eyes glaze over.
And it’s true for index cards too. I can handle up to 3 cards okay. I can even handle up to 3 sub-cards per category… with effort & discipline.
Any corkboard more complex than that? Just so much colorful space junk… wasted on me.
I sit down at my writing desk.
I flip on my desk lamp. My computer already open to the newsfeeds on autism that I post… most days… to my Facebook groups.
My notes, phone, paper, pencils, pens, writing tools… everything I need, organized in one place. Only one question remains…
Do I have enough energy & clarity left…
To BEGIN my day…? To get ANYTHING done that I really want to do…?
Because that’s the question I must answer every day. No matter how I plan it. No matter how I organize my home.
It’s the question facing every autist I have ever known. Every morning.
The struggle for energy and clarity is behind EVERYTHING I’ve described so far about my home.
Every detail is a distraction.
Every distraction saps my energy.
Every decision takes time and energy.
Every rug or dog toy is a risk of stumbling. Every step around… or, worse, step over… any obstacle saps me.
And every nagging thought, “I don’t have time to move it right now… I got stuff to do… I gotta remember to do it later…”
Every undone task… gnaws at the back of my mind. Say, walking on an unswept floor all day… “cuz I just gotta get other stuff done…” drives me bonkers.
Every missing tool. Every tiniest obstacle.
And because of all the above? Every missed goal I brood over… in guilt.
Each and every one of these sets off incessant, automatic backward mental processes…
trying to remember,
trying to decide,
trying to review,
trying to prioritize,
trying NOT to self-loathe,
trying trying trying… instead of doing.
This leads to exhaustion. And collapse. Zero spoons…
Here are 7 surivival principles…
And some bonus tips… I’ve used for myself. Tbh, I haven’t been able to use these strategies in every living situation… all the time.
But I always keep them in mind. And I try to work toward them.
1. Every detail in my home should support my autistic life…
limited social interaction,
intense passions & interests,
a need for structure and routine,
sensory processing differences,
executive functioning differences…
and physical or cognitive disabilities.
My lighting can be neither too bright… nor too dark. Bright lights… especially blue, fluorescent or LED… overstimulate me. Dark surroundings can cause depression.
It took me years to discover the perfect solution. Avoid overhead lights altogether. Instead, create bright “pools” of light with lamps in functional areas. Reading lamps, spotlight on the baking counter, low-wattage bulbs on end tables…
The QUIETER, the better. I didn’t discover this till I moved to rural Indiana. Traffic, sirens, street yelling, parades, mega-bass car radios… were exhausting me. I had no idea.
Now I turn off every fan I can. Noisy lights. Turn the refrigerator up so the fan kicks on less. I put up heavy drapes and block unnecessary windows against traffic and neighbors. When I hang quilts or colorful blankets on my walls… such a pleasant, cozy hush.
I also converted a small 8 x 8 “bedroom” into a blacked-out, noise-insulated yoga room. Doubles as a safe space for when I must isolate.
I thrive with lots of fresh air and outdoor activity. When I can, I use air purifiers & filters. This may be due to allergies… or my chronic respiratory problems. Either way, it helps with my focus a great deal.
Less is more.
More time. More energy. More awareness for what’s important to me. I have as few objects as I can in my home. Now, it’s not exactly a Zen desert… but I do tend toward the minimalist in my art AND life.
If an object doesn’t have a use, embody a memory, or radiate enough beauty to make me feel something… Do I really need it?
2. Simple frustrations can stop me from achieving even simple goals…
If I meet the same obstacle a second time… I stop and fix it. Now. Before I “forget” yet again…
3. Decisions are hard for me.
I try to decide once, and move on. If I don’t move toward the results I want in a reasonable time… then I consider a mid-course correction. Or the next idea.
4. My awareness of my surroundings varies.
My mood varies. And I dissociate… space out or trance out… a great deal. Think “absent-minded professor.”
Both can dim my awareness of what’s going on around me. And I get bored easily. So I’m frequently lost in my head. I bump into things a lot. My house has to assume an autopilot role to help me.
I tend to rely on “cognitive maps” to get around.
I put furniture and floor items in logical places… and then never move them…. At least not without planning and thought. That way, I can get from point A to point B, without thinking. Like stepping around the bathroom scales…
Finding the right “home” for a tool or utensil is key. I imagine, where does an object want to live? Where does it feel it wants to belong? Like pets…
Where’s the first place that pops in my mind when I picture using the object?
Fingernail clippers, for instance. In a hurry, I might use them anywhere in the trailer. Playing guitar, sitting chatting at the table… But after, they always go home to a specific corner in my bathroom drawer. Because that’s the first place I groom after a shower.
I avoid rugs.
I invariably trip on them because I forget they’re there…
Or when I’m not aware enough to lift my feet.
I trip on wall-to-wall carpet too.
My favorite to walk on are hardwood floors… Tile or linoleum, vinyl… work too.
BUT I also avoid HARD bare floors. When I dissociate, I can forget I’m holding a glass of water… until it spills or smashes. Wooden floors are somewhat forgiving. I have lived on tile over concrete… not a good choice.
5. I have trouble negotiating 3D space.
I constantly bump into things… with the bruises to prove it. And it takes a lot of attentional energy to avoid injury.
I put foam rubber on the corners of counters, washing machines, shelves… Anything I bump into.
I try to make sure all hallways are clear of ALL obstacles. Including pictures on the wall… If they stick out much. A Twitter friend removes doorknobs they bump into.
I try to keep ALL doorways clear, at least 2 to 3 feet… No nearby furniture, baskets, shoes, piles of odds & ends.
The concept of flow is central to my life.
I never made a religion of Feng Shui… but I use a few principles religiously. I try to design each room as if water were flowing through it… Where would it flow freely? Where would it be forced to slow down? Where would it get trapped?
Because in my foggy mental state, I tend to wander like water… path of least resistance.
I must be very careful of open doors, cupboards, drawers. I walk into them or bonk my head over and over. When I can, I remove them. This also helps me organize as I talk about in my next point.
6. If I can’t see it… I forget it. Soon… it doesn’t exist for me.
Things in drawers, piled in layers.
Things behind doors.
Things in cupboards.
Things under beds.
All become invisible to me.
I’ve exquisitely organized drawers thousands of times in my life. Only to forget what’s in them… within moments.
I use open shelves or chifforobe for my clothes instead of a dresser. Socks & underwear especially. Drawers become a random mess that won’t close.
I use open shelves for the pantry. I set it up so I can turn, choose, grab, and go from my chopping block.
I use a transparent over-the-door shoe organizer for nearly all my tools. Toolboxes & totes drive me crazy. My home repairs went up 1,000% when I could actually FIND any tool I needed at a glance.
7. If I can’t touch it… I don’t really understand it. Soon… it doesn’t exist for me.
Using my hands helps me remember, think, understand. This includes writing… If I write it, I remember it.
Sometimes… if I just handle the tools in one of my nooks… baking or writing… it can give me the desire to do. So I leave as many tools out to touch as I can. They lend me motivation… when I stroke them.
I organize my workspace around ease of reach. If I use a measuring cup daily… I make sure it’s within an easy arm’s length in my cooking nook. Same for my hammer on my workbench.
If I use a tool several times a WEEK, it must be within a few steps. If I use it once in a while, I make sure it’s in plain sight within the room.
But less than MONTHLY…? Do I really need it?
I obsessively containerize… in transparent containers like jars. Objects with similar uses belong together. In my mind… and in my living space. I’d rather grab one jar of screwdrivers, than decide which ones I might need. Easier putting them away too.
I use baskets, trays, jars, pails… whatever I have handy to group similar objects.
Without containerizing my life? Too much fussy detail. Too many chances for frustration. Or loss.
I hope you got some ideas. Some you might want to try out. Some may inspire you to find your own solution…
Resource articles for further reading:
“Major indoor triggers include irritants such as paints, cleaning agents, pesticides, and perfumes (both personal from toiletries and from deodorizers) as well as building materials such as sealants, plastics, adhesives, and insulation materials.”
- Dyspraxia & Adults, Dyspraxia Foundation USA
Discussion of clumsiness and apraxia.
Discussion of insulation from sensory input from in the environment. Dividing areas into certain activities. Indirect lighting. Easy navigation. Quiet rooms & safe spaces.
“Inside the home, predictability can be a big deal to some on the spectrum. Each room should have an obvious purpose, transitions between rooms should be smooth and their boundaries should be clear. This may help an autistic person establish routines and increase independence, while minimizing anxiety.”
Discussion of using your environment for cues to make changes.