What does it mean to have a sensory-friendly home life? Our senior editor Shannon Rosa shares her perspective as a parent of young people with pronounced and varied sensory support profiles. She also invited writer, artist, and podcaster Johnny Profane to balance her take with his lived experience as an autistic elder. Here’s what they both have to say about navigating sensory issues at home.


Shannon: Though I am a social and sensory odd duck, I am not autistic. I do have neurodivergent children; all of whom are all now bigger than me, all of whom have pronounced sensory accommodation needs. While my middle son’s autism means he does best with 1:1 support, please know my advice is for supporting people with varied sensory profiles.

I am a Senior editor here at Thinking Person’s Guide to Autism, which was created as an autistic/non- autistic, collaborative information nexus to help info share so fewer people have to learn things the hard way, like I did. (My motto is “Learn from me, don’t be me.”)

Though I do have some pronounced sensory issues of my own (I cannot wear binding clothing without getting headaches and nausea, for instance) I am also often oblivious to my children’s sensory issues, and so had to learn about what they were experiencing from others, mostly autistic adults.

Also, mine is a parent perspective: Parenting is largely an exercise in getting past projecting our own hopes and dreams onto our children, and learning what they actually need. So my take on this topic, at the root, is “what does love look like in a household where parents and children are so different from each other?”

Johnny: Well, turns out I am autistic. Likely ADHD for bonus points. I was just last to get the memos.

I’m 70. I guess best known… now… for my podcast, AutisticAF Out Loud. I share stories from my life… so other autists… and the folks who care for them can avoid my many mistakes.

I was born before pros invented autism. 1953. But wasn’t diagnosed until I sought it out. 2016.

So I spent six decades in the dark about my sensory issues. Light, sound, smell, textures, difficulty processing spoken words. I hid all that. From myself and others.

That’s six decades blaming failed careers, burnouts, relationships… psych wards…

Blaming all of it purely on me. I was my own scapegoat… my own black sheep.

And since I was articulate… and tested unnaturally high on IQ …family, friends, teachers? Pretty much piled on. Blamed my “bad attitude.”

But…

But let’s cut to the chase… the good part. I’ve spent six years since diagnosis rediscovering my autistic joy. I can honestly say at 70, this is the most productive, happiest period of my life.

And learning to tune into my body and sensory needs… and then meet them? A big part.

Shannon: I have learned that we can create sensory-friendly environments that allow everyone therein to function best. It isn’t always easy, and it can mean compromise if there are competing access needs. But by placing a focus on how autistic people and others with sensory sensitivities perceive and process their environment, and reframing sensory modifications as caring adjustments rather than impositions, we can create spaces in which we all thrive.

Johnny: Well, I have to echo something you said. About compromise. Let me “yes-and” you and add collaboration to the mix. Working together with folks in my life… that changed everything.

What gave me the time… and the space to meet my sensory needs… honestly, to even discover them…

Let me start again.

Not “What.” Who gave me the basics… the roots…. the love, acceptance, and willing partnership to create my first, safe home? My wife of ten years. Who may… or may not… be neurodivergent. She’s not in a rush to get labeled. And I… well, I love her for who she is.

We’ve made some unusual compromises along the way, including living in separate homes near each other. I’ll share some other doozies as we go.

Before we go further: Up front, I can’t speak for other autists. We’re all different. Different environments, abilities, traumas.

But we have so much in common, I find we can learn from each other. And parents, educators, employers… seem to get ideas from us too.

Shannon: I am so, so beholden to autistic adults like Johnny. Parents may know their kids best as individuals, but autistic adults know autism best. And people who don’t experience sensory issues—or the same sensory issues—need help understanding those experiences.

No one says listening to autistic and neurodivergent adults with beneficial sensory insights is going to make everyone’s life easy. We do say that it will probably make people’s lives easiER. Most of us (autistic people and families) are struggling. Who wouldn’t want to shake off at least some of that stress?

Johnny: You know listening is a two-way street. That’s what I found.

Most of my life was painful. Physical, emotional, intellectual. And like many folks in pain, it became the center of my world. Easing it, avoiding it, screaming at it, sleeping through it…

Eaten up, trying to understand it.

In a real-world way, no matter how hard I tried, it seemed I couldn’t collaborate with others to create a happy space, happy life. And I went so far as graduate training in therapy.

The humans I knew? Didn’t understand what I needed. And I didn’t get that folks in my life had different needs than me.

Which is weird, because compassion? Always been my driving force. Doing for those I love… including my animals… gives me super joy. Always has. A smile? Biggest reward in my life.

But I kept giving them what I needed. Wasn’t what they wanted at all!

I lived in such a confused fog. It seemed like, if I’m following all the rules, putting in all this effort, how can things keep blowing up in my face? Grade school, grad school, work… home life.

I was like a poster boy for what pros call the Double Empathy Problem. My family, friends, teachers wanted to help. But they didn’t understand what I needed. I wanted to help them… and vice versa.

So I’m beholden to my wife, one psychologist, and a few dear friends for giving me their time—and patience to bridge that gap.

Shannon, our focus is sensory processing issues. Let’s just say until these partners who came into my life? I didn’t know I had any problems with senses. Other autists may relate.

But NOW I know…

I have difficulty dealing with sound and light levels higher than I find in nature. Like, say, a forest. Right now, I gotta jump up and turn off my stove fan. Turned it on when I burnt my breakfast eggs. But now it’s driving me crazy. But, light’s ok. My living room has pools of low lamp light. No overheads. And no fluorescents or bluish light.

And touch? I crave hugs. But can’t stand to have my face touched. Like tiny ants tickling me. Eeek! Kissed my wife goodbye before sitting down to write. To an outsider? Must look like a weird native dance ritual.

All my senses can get overloaded. Which impacts my life. Every day. Like I can’t launder my clothes, wash my face, mop my floors without scentless soap.

Shannon: Probably now is a good time to talk about what we mean by “sensory.” We are talking about your body’s senses. Not just the main five that we are usually taught, which are sight, taste, hearing, smell, and touch.  We also have interoception (your body’s ability to sense things, like hunger, pain, and needing to use the toilet), proprioception (your ability to tell where your body is in space, e.g., can you touch your nose with your eyes closed), and vestibular (your sense of balance, also known as the sense that gives some people motion sickness).

Autistic and neurodivergent people can have sensory responses that are either much more or much less intense than others (and which are often misunderstood as “behaviors” or can lead to “bolting” when autistic people have intense sensory responses that non-autistic people don’t themselves perceive).

Some examples of autistic sensory traits:

  • Super-hearing”:  Autistic people often can hear noises other people don’t perceive. Note that this is not the same experience as hyperacusis, in which sounds can be painful and debilitating.
  • Touch: As Johnny talked about above, sensitivity to touch can vary: Light touch can be torture, deep pressure can be soothing, tags in clothing can be unbearable.
  • Interoception: Hypo- or hyper-responsivitiy to pain: “Overreacting” to supposedly minor injuries, and not reacting at all to major injuries, including sprains or breaks. Not sensing toileting urges. Not realizing when hungry or thirsty or overtired.
  • Heightened taste or smell: This can lead to selective or “picky” eating, and even migraines.
  • Sensitivity to light, especially lights that strobe at frequencies non-autistics don’t detect.

Johnny: You have no idea how many memories rushed through my head just now! Childhood, teen, adult… Whoa.

I relive memories in the moment… the sensations, the emotions. So, an overwhelming rush…

Supermarkets? Tough for me since… forever. I couldn’t know why from my side of the skin as a kid.

But I hear “electricity” in stores. A persistent low hum and high hiss that never stops. Bright overhead lights nauseate me. Especially bluish fluorescents since the 1960s. The sharp painful sounds.

Freaking knowing when it was okay to ask for candy… and when not.

I’m sure my parents did the best they knew in the 50s. Old school, “man up” types. My solution? Dissociation. Tuning out. Disappearing inside myself.

Unfortunately, catching flak for not paying attention… or for disrespect.

Lots of bolting out of class. And begging for toilet passes. Anything for a break.

Persisted well into adulthood. Like the time I jumped out of a moving car at 34. I couldn’t handle the justified complaint my driving girlfriend just made.

Here’s a quick idea on my ignorance of pain and interoception. I’m 48 or 49. My soon-to-be surgeon’s face goes white. He’s taking his first peek at the x-ray of my left knee, “My g-d, you’re walking on that? Everyday? You must have some tolerance for pain, my friend.”

It’s hard to explain how this affects every scrap of daily life. Senses are my only connection to the world. And they’re not a reliable filter.

For much of anything.

Shannon: If non-autistic people start to understand how differently autistic senses work, then they can get why it is so important to accommodate autistic, people rather than punish them for having what are actually completely rational reactions—or try to condition them to tolerate sensations that are intolerable.

Examples of sensory accommodations include:

  • Self-regulation: Recognizing calming/regulating stimming and echolalia.
  • Executive functioning: If kids are using their mental energy to deal with sensory issues, that’s less energy to focus on social or academic tasks
  • Happiness: People may not even be able to identify what their sensory needs are (interoception, again) but they know when they’re not happy. This includes leisure activities, which sensory issues can disrupt.
  • Trust: Our kids have an often desperate yet unfulfilled need for safe spaces
  • Flexibility about a person’s sensory accommodations changing. I realize this can feel hard for overwhelmed parents or teachers who are already doing differentiated instruction. But accommodations should not be one-and-done; they have to be a process, a system.
  • Avoid blame: Don’t blame people for needing accommodations, don’t ignore their needs. Treat kids like fellow humans. Get their input, if that is possible.

Johnny: It’s time I offered a glimmer of hope. Heck, dancing-on-sunshine buckets of hope.

Every step on this journey. Every fan turned off. Every meal built around my foods. Every move to a slightly quieter neighborhood…

A little more joy in my life. A few less meltdowns or burnouts. A slightly better life. Step by step, every day. And it gets easier and faster as I go.

But, every bit? Completely depends on what you said last, Shannon. My wife, her family, friends, and I slowly learned to believe in each other. Now that’s my new safe space.

Okay…

Got that off my chest. Rant mode off.

I did a two-part podcast on “Designing My Home around Adult Autism.” Lotta detail there. But a quick story might bring this home…

So, like some autists, I wake up slow. This particular morning, I roll out of bed, on auto-pilot, out of touch. Stumble into the bathroom. Something stops me. I stand.

After a moment, I shout. “DAMN.”

My brain just got the message. My big toe smarts… and I wail, “WHO… left the scales in the middle of the bathroom?!”

So my wife says… quietly from behind, “They’re not in the middle of the floor.”

So I jump. Hitting the bastards again.

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

But I need something she doesn’t. A brain map of my surroundings… that doesn’t change.

I’m like an absent-minded professor. If I’m focused, I’m less aware of surroundings. I need to know where things are. This is one reason I live alone. And design my home around my autism.

To continue my morning… I head to the kitchen for coffee. Speeds 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, work table. Into the kitchen…

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. I need solid surfaces in every room to touch as I go through.

So, I click a burner on high. Turn to my coffee nook beside it. Grab my pour-over pot, a filter…

Then reach into the fridge for my Bustelo and half-&-half.

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 hiss…

I create routines whenever I can. They save mental energy. Like they say, save “spoons” for important stuff.

That’s also why I arrange my entire trailer home in “Nooks.” Music stage. Office. Baking. Tools. Movie corner. Laundry… Places where I can find all the tools, resources, space, and furniture I need for each project.

Cuz simple frustrations can stop me from achieving even simple goals.

I sit down at my writing desk, flip on my desk lamp.

My computer, already open to the news feeds on autism that I post… most days… on social media.

My notes, phone, paper, pencils, pens… everything I need, organized in one place.

Only one question remains…

Do I have enough energy and clarity left… 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 most autists I’ve known. Every morning.

The struggle for energy and clarity is behind EVERYTHING I’ve described so far about my home.

Shannon: One of the hard things about sensory issues is that they can be a factor in meltdowns, self-injury, and aggression. Even harder is the stark reality that too many approaches to autism don’t acknowledge the existence of sensory factors, and instead try to control or eliminate “reactions” or “behaviors” without even understanding why they are happening, how impossible it can be for autistic people to manage their own reactions once triggered and in crisis, and how to maintain environments in which these kinds of sensory incidents are less likely to happen.

It’s crucial to understand that an autistic meltdown is not a tantrum. Meltdowns are involuntary physical reactions to crisis or being overwhelmed; they do not stop if you “give in.” Tantrums are manipulative, and tend to end once the tantrummer is appeased. And yet so much instruction for supporting autistic people is about “managing” behavior, which is the opposite of what needs to happen.

Another often-overlooked factor in sensory-based “behaviors” are medical issues. Autistic interoception (sensing one’s own body) can be either more or less intense than that of non-autistic people. Autistic people may not react to an injury as extreme as a broken bone or a medical emergency like appendicitis except to “misbehave.” Or an autistic person may find a minor hurt like a hangnail or minor illness like a mild sinus infection intolerable to the point of explosion. Medical issues are often the reason for “sudden” changes in behavior. And sensory modifications are not going to solve medical issues, though they make the diagnosis and treatment journey easier.

Here are some general strategies to help maintain an autistic person maintain sensory equilibrium:

  • Avoid overwhelming environments whenever possible. Don’t force your autistic person to be in noisy, bright, or crowded spaces that you know they can’t tolerate. Especially do not do this “for their own good” or “because they need to learn to adapt.”  Understand that this approach is one of  basic decency as well as an exercise in common sense.
  • Provide a customized sensory retreat space if you can, one that is predictable and safe, and where a person can be by themselves if needed. Understand that “quiet” and “sensory-friendly” are not necessarily the same thing.
  • Get comfortable with separate spaces. Sometimes sensory accommodations mean people can’t be in the same spaces as each other due to “competing access needs.”  Sometimes this means needing to to taking separate cars or other transportation for family trips (if possible). Sometimes this means not going on family trips. Doing the right thing isn’t alway easy.
  • Identify sensory regulating activities. Try to find activities that help your autistic person’s sensory system regulate. For my son this means lots of walks and hikes, lots of time on adult-sized swings, lots of swimming.

Johnny: You know, it’s weird. I have a life history of hurting myself. But I’m not sure if parents or partners saw it.

Self injury, SIBs, are a mystery to me. They’re not a choice. But I think I escape panic by hurting myself.

Banging my head. Biting my hand. Scratching my face. Sometimes picking at my body til I bleed. Many things. But now… so much less. Many months since the last time.

Shannon: That makes me both happy and sad for you. Sad for past Johnny and happy for you now.

Let’s talk about those competing access needs. Having multiple people with autistic and neurodivergent sensory traits in a home can mean greater understanding, but it can also lead to conflict: In our house, we have some people who like to make noise, some people who are rather insensitive to noise, and some people who are overly sensitive to noise. If the noise maker is happy, the noise-avoider is miserable, and the noise-oblivious person (okay, me) is too often wondering what the hell is going on. We are still learning to negotiate our space to suit everyone’s sensory needs.

What can competing access needs look like?

  • Kids constantly telling each other to “shut up”
  •  Refusal to agree on family meals
  • Arguing over whether to use subtitles on the TV
  • Disagreements over appropriate noise, volume, and light levels
  • Bolting from classroom
  • Inability to use noise-canceling headphones because of tactile sensory issues
  • Refusing to use sensory accommodations because of need for hypervigilance due to life-long mistreatment

Johnny: I believe… and this is me trying to figure it out… I hid a great deal under a cloak of anger and verbal aggression. Because my meltdowns… my overwhelms… end in panic attacks that terrify me if I don’t catch them in time.

And it’s embarrassing. In the middle of a conversation… to unexpectedly start yelling or crying. Because the cat wants attention, there’s a bill I’m worried about, I’m hot, and the TV’s one notch too loud… One too many demands, which I could handle… if they came one at a time?

A big part of reducing SIBs? Reducing sensory distraction. Now I turn off every fan I can. Noisy lights. Turn the refrigerator temp 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 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’ve also learned skills. Like noticing telltale physical signs I’m anxious. Or overcoming my shame to explain my discomfort.

And my people have learned skills. Acceptance. Gracefully asking if I’m okay. Helping me decide which events and environments are good for me… which ones could be sketchy.

All I know, it’s gotten easier. And the SIBs have greatly diminished.

ShannonAgain, I’m glad to hear how much your own sensory self-awareness (and your people’s awareness of your sensory needs) has improved your life.

If, as a parent, you want to create a sensory-friendly home, then include your child in the process. Everyone has opinions on how they want their things to be, even if it’s just saying or indicating yes/no. Again, it will be a process as sensory profiles can change over time. And all the sensory accommodations you’d like might not be doable, because of space or budget. But please believe your autistic children when they tell you what they need—if they’re able to do so—and regardless watch for cues (like putting hands over ears or crying over loud noises).

Examples of sensory accommodations in the home:

  • Quiet spaces that are truly quiet and separate
  • Trampolines
  • Readily-accessible stim toys
  • Noise-canceling headphones

Johnny: Here’s the birds-eye view, the principles that work for me. As I say, there’s a lot more detail in part 2 of the podcast series. But here are the nuggets.

Bear in mind, every autistic person’s details will be different. But I hope these get you thinking…

Most folks design their homes around entertaining… and looking good in the neighborhood. These aren’t my priorities.

So I design every detail in my home to 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.

The QUIETER, the better. I didn’t discover this till I moved to rural Indiana. Traffic, sirens, yelling, parades, mega-bass car radios… were exhausting me. I had no idea. I shoot for under 50dB… roughly forest level.

I thrive with lots of fresh air and outdoor activity. When I can, I use air purifiers and 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. 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?

My awareness of my surroundings varies. My mood varies. And I dissociate… space out or trance out… a great deal. I rely on “brain 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.

Finding the right “home” for a tool is key. I imagine, where does an object want to live? Where does it want to belong? Where’s the first place that pops into my mind when I picture using the object?

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 have trouble negotiating 3D space. 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. I try to keep ALL doorways clear, at least 2 or 3 feet… No nearby furniture, baskets, shoes, piles of odds and ends.

The concept of flow is central to my life. I never made a religion of Feng Shui… Chinese home design. But I use a few principles religiously. I try to design each room as if water were flowing through it… Where would it flow free? 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, doorknobs, cupboards, drawers. I walk into them or bonk my head over and over. When I can, I remove them.

This also helps me organize… cuz if I can’t touch something… I don’t understand it. Soon… it doesn’t exist for me.

Using my hands helps me remember, think, understand.

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 store my tools on the walls or on display. They lend me motivation… when I see them, 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 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 spend time deciding which ones I might need. Easier to put 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.

Some of you may find these ideas useful. Some may strongly disagree. Either way, it may get you thinking…

What do I hope for your readers, Shannon? They think about how they want their living space to support their lives… and ADD to them.

Forget social conventions. Make your home work for you.

Photo of a cottage on top of a steep mountain peak. A rainbow in the sky is arcing over the cottage. AI-generated.
Image by DALL·E