Designing My Home Around Adult Autism: Pt. 1 – Making It Work for Me

AutisticAF Out Loud cover art for S02E07.Top frame: Headline reads, "New Episode, Designing My Home Around Adult Autism: Part 1, Making It Work". It features an illustration of an elderly gentleman, reading from a script and wearing sunglasses & fedora hat. Bottom frame: "No Direction Home," original digital illustration in a graphic-novel influenced style of a row classical Greek pillars vanishing into the distance.
Season 2, Episode 7. Listen or download at 3 dots.

#AutisticRave: Group Processing Disorder. It's a Thing. #AutisticAF Out Loud

  1. #AutisticRave: Group Processing Disorder. It's a Thing.
  2. Imaginary Friends? This Autistic Kid's Bestie… Dissociation, Pt 1
  3. #AutisticRave: Life after Diagnosis: Joy… and Horror.
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Video Cast
Captioned for audio processing difficulties.

Part 2, “Survival Principles” here.

INTRO

Hi! I’m Johnny Profane.

Welcome back to Autistic As Fuck Out Loud. And Part 1 of “Designing My Home Around Adult Autism.”

Think about it. What do most humans want from a new home? Big welcoming entrance. Living room. Dining room. Family room. Home theater. Bathrooms. Closets…

All o entertain & impress guests. For everything else… they invented tool sheds… and storage units.

Honestly…? Autistic-as-fuck.me has different priorities.

If you’re autistic, love one, work with some… or just can’t figure out if you are one…

Here’s how I repurposed my home. To work for my needs…

Safety. Peace & quiet. And my passionate interests…

Real talk. About real life.

Because you won’t find much discussion of autistic living in Better Homes & Gardens…


EPISODE

“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.

“AARGH!!!”

I love my wife, I love my wife, I do, I do, I do… I love my wife…

This…

This is one reason I live alone. And design my home around my autism.

As an autist, I’m challenged… managing space, time, mind, heart, body,
and above all… energy.

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
creating routines,
organizing space,
containerizing,
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.

Meltdowns, shutdowns, depressions, decompensations…

For bonus points? Ya got yer executive processing problems with decisions & prioritizing. ADHD & mild dyslexia problems with any list longer than 3 items…

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… Negotiating my living space challenges my autistic mind.

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]”(https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/). If you haven’t already read it. Links in the transcript.)

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

  • coffee,
  • 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”…

  • illustrating,
  • writing,
  • vlogging set,
  • tool bench.

My 10×12 bedroom…

  • bed,
  • 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. Go 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…

Turns out…

IF I CAN’T SEE IT… I FORGET IT. SOON… IT DOESN’T EXIST FOR ME.

And…

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.

Unfortunately…

I CAN’T PROCESS ANY LIST LONGER THAN 3 ITEMS. I’VE SAID ITV 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 news feeds 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…

I’m gonna come back at you in Part 2 with 7 Principles I use for designing my autistic home.

OUTRO

I hope you got some ideas from this episode of Autistic AF Out Loud. In Part 2, I give you details. Guiding principles. Action items you can tweak for children or adults, and further reading.

Quick reminder. Find #AutisticAF Out Loud podcast on Apple, Spotify, and most podcast platforms. YouTube episodes feature closed captions to support folks with audio processing difficulties.

The blog at Autisticaf.me has all the transcripts… and more posts.

If you learned something from this episode, please consider supporting my expenses. Most podcast apps have a support button. And there are links to PayPal and Ko-Fi in the transcript. Or use Facebook Pay to “Johnny Knapp Âû.”

A special shoutout to podcast subscriber Marilyn Muller. She’s an activist mother of neurodivergent kids. Her generous tip helped me get the new Yeti mic that I recorded this episode with.

I promise to continue offering all my autistic-related info for free. Expenses run about $175 a month. I live in public housing on Social Security. A few bucks can make a big difference.

But… as always…

The best support you can offer…?

Share this episode with a friend that you know… cares.

Part 2, “Survival Principles” here.

#AutisticRave: Group Processing Disorder. It's a Thing. #AutisticAF Out Loud

  1. #AutisticRave: Group Processing Disorder. It's a Thing.
  2. Imaginary Friends? This Autistic Kid's Bestie… Dissociation, Pt 1
  3. #AutisticRave: Life after Diagnosis: Joy… and Horror.
Subscribe to hear new episodes…
AppleSpotifyPocketCastsAmazon/AlexaAudibleMore Platforms

Support AutisticAF.me here: Paypal · Ko-Fi · Facebook Pay “Johnny Knapp Âû

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