Why Before How: Understanding Autistic Behavior Through the 28 Human Senses

I keep seeing the same question in autism-parent and caregiver spaces: "How do I make their behavior better?" or, "How do I deal with their reactions to X, Y, and Z?".

I know those questions come from concern, from exhaustion, from wanting life to run smoothly again. But they all start from the wrong place. They start with How.

The first question should always be Why.

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I say this as both an autistic person and a caregiver myself — I’ve seen both sides of the panic, the exhaustion, and the good intentions that sometimes become harm.

Why is this person acting this way?

What is happening in their body, their brain, their senses, their environment that is causing that reaction?

This applies as much to adults in full-time care as to children at home; the body doesn’t age out of sensory pain, it just loses witnesses.

Because behavior is not random. Behavior is communication. It’s information leaking through when words fail or when the body can’t keep up with what the world is throwing at it. And if you try to fix the behavior without understanding the reason, you’re only tightening the lid on a boiling pot.

For autistic people, “ignoring” sensory pain is not strength; it’s injury. You can teach us to hide the reaction, but you can’t teach our nervous systems to stop feeling it. You’re teaching us to internalize distress until it turns into shutdowns, meltdowns, burnout, anxiety, gastrointestinal problems, and, eventually, trauma. Masking is not coping; it’s survival with a time limit.

Think of it this way: imagine a fire alarm blaring next to your ear for hours, and someone tells you, “Just tune it out.” You might manage for a while, but you’ll still flinch at every sound afterward. Your body learns that the world is unpredictable and unsafe. That’s what happens when autistic people are asked to “ignore” the very sensations their brains register as threats.

The world tells the story of five senses—sight, sound, smell, taste, and touch—but humans have far more. Modern neuroscience recognizes at least twenty-eight distinct sensory systems, each sending continuous information to the brain. Any one of them can misfire or flood, and for autistic people, the threshold for “too much” or “too little” is different. Sometimes the volume is turned up too high; sometimes the channel cuts out. Sometimes the wires cross and one sense hijacks another. That’s why the same world feels entirely different inside our skin.

Sight: bright light can be agony. Fluorescent bulbs flicker at 100–120 hertz, faster than most people consciously notice, but many autistic brains do notice. It’s like living in a room where the lights strobe just fast enough to make you queasy. Visual clutter—too many moving screens, posters, patterns—creates constant motion in peripheral vision, and the brain never rests. On the other hand, some of us seek light: spinning crystals, glitter, lava lamps, things that sparkle because they give our eyes a predictable rhythm. To a non-autistic person, it might look like fascination with nonsense; to us, it’s equilibrium.

Hearing: every sound competes for the same neural stage. You might be able to chat calmly in a restaurant and filter out the clatter of dishes. I can’t. My brain processes each crash and voice at equal priority, like fifty people talking at once. The body interprets that as danger, releasing cortisol and adrenaline until I’m shaking. Some autistic people wear noise-canceling headphones not to withdraw from life but to participate in it without drowning. Others seek certain frequencies or loops because repetition feels grounding—white-noise machines, the same song on repeat, the same line of a commercial. It’s self-regulation, not obsession.

Smell: scent is tied directly to the limbic system, the brain’s emotional core. Too many competing smells—perfume, cleaning chemicals, food—can trigger nausea or migraines. For me, air fresheners in public bathrooms feel like being trapped inside a chemical storm. Yet smell can also soothe; candles, essential oils, a familiar detergent can stabilize mood. You probably have your own version of that—coffee in the morning, a partner’s shampoo—but for autistic people the dial is turned far higher.

Taste: texture, temperature, and aftertaste all register as separate sensory channels. A food that “tastes fine” to you might feel like gravel or slime to me. It’s not pickiness; it’s pain or panic from the mismatch between expectation and sensation. That’s why many autistic kids survive on a handful of safe foods—predictable taste equals safety. Forcing variety before tolerance is built only deepens aversion.

Touch: this one defines daily life. Clothing tags can feel like sandpaper. Certain fabrics feel electric. The light touch of a sleeve brushing skin can register as burning, while deep pressure—a weighted blanket, a firm hug—can be bliss. The difference is neurological, not emotional. The receptors in the skin send signals that the brain amplifies or mutes unpredictably. When I say a haircut feels like being stung by fiberglass, I’m not exaggerating. It’s that level of nerve activation. You wouldn’t tell someone allergic to bees to “get used to it.”

Balance and acceleration—equilibrioception—are handled by the vestibular system in the inner ear. That’s why spinning can be joy for one autistic person and sickness for another. Roller coasters, elevators, even escalators can disorient. A vestibular overload can cause vertigo, nausea, and panic. Conversely, swinging, bouncing, or spinning voluntarily can calm the same system because the body gets to control the motion.

Temperature, or thermoception, works similarly. Many of us can’t regulate body temperature properly. I start overheating at 73 °F and freezing below 66 °F; my body doesn’t adapt smoothly. Heat sensitivity means summer feels like punishment, while others under-sense temperature and go out in shorts during snowstorms. These aren’t choices; they’re calibration errors in the nervous system.

Proprioception—the sense of body position—tells you where your limbs are without looking. If that sense is weak, you bump into doorframes, drop things, or panic when you can’t see your hands. Occupational therapists often use “heavy-work” exercises or weighted tools to strengthen proprioceptive feedback. When the world feels uncertain, feeling the ground through pressure can re-anchor the body.

Pain, or nociception, also varies wildly. Some autistic people feel almost nothing until serious injury; others feel pain magnified several times. Both extremes are dangerous. The under-sensitive can break bones without realizing it. The hypersensitive can experience light pressure as stabbing. Pain perception also interacts with anxiety and past trauma—when the body has learned that pain never stops, even mild discomfort can trigger panic.

But here’s where this becomes more than theory. In daily care — especially in homes, hospitals, and classrooms — differences in pain perception can hide serious medical issues. Someone who doesn’t register pain might not flinch at a sprain, a broken toe, or an infection until it’s visibly advanced. By then, treatment is harder, and the staff might never have realized anything was wrong. The opposite can happen too: a person who feels pain magnified may react to mild pressure, brushing, or temperature changes as if they’ve been burned. When caregivers see sudden resistance during bathing, dressing, or grooming, it isn’t defiance; it may be the nervous system sending distress signals the person can’t articulate.

Documentation and pattern-tracking save lives here. If someone starts walking differently, avoiding touch, or favoring one side, assume pain first. Ask gentle, concrete questions — “Does this hurt?” “Does it feel hot or sharp?” — and if words don’t work, use gestures, pictures, or body-map charts. In healthcare, advocate for thorough exams even when the patient “doesn’t seem bothered.” Pain unrecognized is pain untreated, and autistic people are chronically under-treated because others assume silence means comfort. It doesn’t. Sometimes it means we don’t even realize we’re hurt yet. And that’s not a moral failure — it’s a training gap that can be closed. The difference between neglect and care is usually awareness, not intention.

Magnetoception—the possible human ability to orient to Earth’s magnetic field—still sits on the edge of research, but preliminary studies show changes in brain-wave patterns when magnetic fields shift. Whether or not we consciously “feel” direction, our nervous system may register it. Some autistic people have remarkable directional sense; others get lost in their own neighborhoods. Either could be linked to how that system processes spatial data.

Sexual stimulation is its own sensory category, encompassing touch, pressure, heat, and emotional safety. Many autistic adults report either hypersensitivity—every touch feels too intense—or hyposensitivity, where pleasure signals are dulled. Both can complicate relationships and body image, especially in cultures that treat those differences as moral failings instead of neurological diversity.

Then there’s the entire world of interoception, the inner senses. This is the sense most likely to get someone hospitalized or misunderstood, because the body’s quiet emergencies don’t always look dramatic. You can’t fix what you can’t feel, and that’s what makes interoception the most treacherous gap between behavior and biology.

Hunger, thirst, heartbeat, breathing, digestion, the need to urinate—these are all sensory channels, too. When interoception is impaired, people may forget to eat or drink, fail to notice dehydration, or misinterpret anxiety as hunger and vice versa. I often don’t realize I’m thirsty until I’m dizzy. My wife and I both miss hunger cues until they turn into migraines. Others feel every heartbeat as if their chest is shouting. Cardioception—awareness of heart activity—can feel like being trapped inside a drum, impossible to ignore.

These internal senses affect nearly every aspect of daily living and personal care. If hunger and fullness signals misfire, weight changes can swing wildly — not from “poor choices,” but from a brain-body miscommunication. I’ve worked with people who eat until they’re physically ill because the signal to stop never arrives, and others who forget to eat for an entire day because the cue never starts. Add medication side effects or stress on top of that and you have a constant tightrope between malnutrition and exhaustion.

Thirst is similar. Dehydration can look like irritability or fatigue long before it looks like danger. For someone who doesn’t feel thirsty, no amount of “drink some water” reminders will work unless it’s built into routine. Make hydration visual and scheduled: water bottles labeled with times, cues before meals, flavored water if plain water causes sensory aversion. In my own work, I’ve seen how simple design changes matter — as a made up example, one resident drinks twice as much when we switch to clear containers, because seeing the water itself triggers the cue his body misses.

Bodily cues around urination and bowel movements carry their own risks. If those sensors under-report, people can develop urinary tract infections or constipation before anyone notices. If they over-report, the person may feel constant urgency and distress. In group homes, this can be mistaken for attention-seeking or “bathroom fixation,” when it’s actually interoceptive confusion. Respect those signals even when they seem illogical. And when staff assist with toileting, remember that embarrassment and trauma from past shaming can compound the stress. Approach it with the same dignity you’d want if your own signals stopped working.

When someone is non-speaking or has limited reliable speech, treat every setting as communication by default. Keep AAC available at all times: yes/no cards, picture boards, sign, gestures, text-to-speech, body maps, and choices presented in concrete pairs (“blue shirt or green shirt?”). Build a shared “signal dictionary” with the team and family—what rocking, pacing, hand-biting, shirt-pulling, or head-turning tends to mean for this person. Post it where staff can see it and update it as you learn.

For pain detection without self-report, use proxy tools (e.g., FLACC scale) and an assume-pain-first rule for new or escalated behaviors: new self-injury, guarding a limb, grimacing, flinching from usual care, waking at night, refusing favorite foods, sudden agitation. If you suspect pain, escalate to assessment even if the person “looks fine.” Silence is not a negative symptom; it’s a barrier.

For personal care, use a low-arousal approach: warm the room, dim bright lights, reduce noise, and narrate each step before it happens (“water on feet first, then ankles”). Offer choices (washcloth or shower wand; mint or unflavored paste; soft brush or silicone). Try a towel over shoulders during hair washing, a brimmed cap to block spray, or brushing teeth with unflavored gel and a silicone brush. Use count-downs (“three more strokes”) and a predictable exit cue (“all done, drying now”). If distress spikes, pause and let regulation return instead of pushing through. Even self-injury or aggression often begins as pain language — an SOS when other signals fail. Treat it first as medical, then sensory, before assuming it’s behavioral. Completion is not the goal; dignity and trust are.

Breathing and heart-rate awareness can also shape how someone experiences anxiety. If an autistic person suddenly panics or gasps, it might not be “behavioral.” Their chemoreceptors could be misfiring, flooding their system with the false alarm of suffocation. Teaching controlled breathing helps, but only if done gently — forcing “deep breaths” on someone already hypersensitive to their lungs can make it worse. The rule of thumb: always assume the body is telling the truth, even if you can’t hear it yourself.

Pulmonary stretching monitors breathing; peripheral chemoreceptors detect carbon-dioxide buildup and trigger the feeling of suffocation. If that system is overly sensitive, the person may panic when wearing a mask or swimming underwater. The chemoreceptor trigger zone controls vomiting when toxins are detected; in some of us, that switch flips too easily, leading to chronic nausea or gag reflex from minor smells. Gastrointestinal stretch receptors warn of bloating; esophageal and pharyngeal sensors detect swallowing or obstruction. Bladder and rectal sensors signal when to use the restroom. For someone whose interoception is unreliable, any of these can misfire—no signal until it’s too late, or constant false alarms.

Blood-vessel stretch sensors help regulate blood pressure; when that feedback loop fails, standing up can cause dizziness or fainting. Baroreceptors do the same on a finer scale, adjusting circulation with every heartbeat. Dysautonomia, common in autistic populations, often traces back to these same systems miscommunicating with the brain.

Ultraviolet radiation sensing affects pigmentation and the body’s caution response to sunlight. Some autistic people are under-responsive to burning and don’t realize skin damage until hours later. Others feel the sting of UV exposure almost instantly. It’s another example of how our safety depends on signals we can’t control.

Chronoception—the sense of time—is famously skewed in autism. Minutes can stretch, hours can vanish. Without a stable internal clock, transitions feel like sudden drops, which is why changes in routine can trigger panic. The sense of agency—the feeling of initiating an action—can also fluctuate. When executive function falters, it feels like watching yourself act without permission, or being unable to act at all despite wanting to. Familiarity, the sense that something has been experienced before, explains déjà vu and its opposite, jamais vu; when that sense misfires, the world feels either hauntingly repetitive or completely alien.

Add them all together—twenty-eight senses, each with potential to over- or under-react—and you start to understand why the world can feel hostile. If each sense can pair with every other, there are hundreds of communication lines inside the body and hundreds of millions of possible overload combinations. A single “meltdown” might come from any mix: temperature too high, shirt tag itching, fluorescent light flickering, heartbeat racing from caffeine, hunger ignored for hours, smell of cleaning spray, sound of traffic, memory of yesterday’s embarrassment, time distortion from stress. No single fix will solve it because it’s not a single problem. It’s an ecosystem reacting to imbalance.

People sometimes ask, “Why can’t you just ignore it? It doesn’t bother me.”

The short answer is: because you can.

Your nervous system filters noise, smell, pain automatically. Mine doesn’t. You don’t earn that difference; it’s structural. To ignore it, I’d have to override every warning my body sends until it stops trusting itself. That’s what masking does—forcing calm while the alarms keep ringing inside. Over years, that rewires the stress system itself: chronic stress and HPA-axis dysregulation, digestive dysfunction, and anxiety disorders. The “quiet” child who seems fine might be living in constant panic beneath the mask.

You wouldn’t tell a person with epilepsy to “just control your seizures.” You wouldn’t tell someone with asthma to “just breathe normally.” Yet autistic people hear the equivalent every day. When we stim, cover our ears, wear headphones, or leave a crowded room, we’re not misbehaving. We’re using the body’s own emergency exits.

Scientific studies support this. Functional MRI shows that autistic brains have stronger connectivity between primary sensory cortices and limbic regions, meaning sensory input triggers emotional centers faster and harder. White-matter tracts that normally dampen noise between senses can be thinner or overactive. That’s why a flashing light can feel like pain or a sound can register as physical pressure. It’s cross-talk, not choice.

Once you understand that, the question changes. It’s no longer “How do I stop this behavior?” but “How do I reduce the pain causing it?” Sometimes the answer is environmental—lower lights, quieter space, softer fabrics. Sometimes it’s biological—check hydration, hunger, sleep, hormones. Sometimes it’s emotional—fear, confusion, lack of control. Each sense interacts with context.

This isn’t abstract theory for us — it’s daily triage. Every sense you understand becomes one less crisis you misread, one less escalation that could have been averted by curiosity instead of control.

In caregiving, these “context” checks save more than comfort — they can prevent medical emergencies and systemic neglect. A resident refusing a meal might not be rejecting food; they could be overwhelmed by smell, bloated from slow digestion, or experiencing acid reflux that feels like choking. A client resisting a shower might not be stubborn; maybe the water pressure feels like needles, or the shift from warm air to cool triggers thermoceptive panic. Even subtle mismatches — toothpaste flavor too strong, towel texture too rough, soap scent too sharp — can tip the nervous system into defense mode.

A 60-second daily check catches most issues before they explode:

• Environment: lights, noise, smells, temperature acceptable?

• Body basics: slept? ate? drank? bowel movement? pain scan?

• Clothing/gear: tags? seams? wet socks? too tight/loose?

• Predictability: schedule visible? transitions warned? choices offered?

• Communication: AAC present and modeled? yes/no card handy?

If one box is off, depending on the situation, it may be wise to fix that first. It prevents most “mystery behaviors.”

I’ve seen people lose trust in entire teams because every day, their distress was labeled “noncompliance.” What they needed wasn’t stricter discipline but sensory translation. The difference between suffering and peace can be as small as switching detergents or softening the light above a mirror. For non-verbal or semi-verbal individuals, that change is a conversation finally understood.

Healthcare settings need this awareness too. Vital signs and test results don’t always tell the full story if the patient’s sensory feedback is irregular. A person who doesn’t feel internal pain may miss early symptoms of appendicitis, gallstones, dental infections, or pressure sores. Regular preventive checks, even when there are “no complaints,” become essential.

Medical visits need sensory design to be humane and effective: request the quietest room, lights dimmed if possible, and a single speaker at a time. Bring a comfort kit (noise-canceling headphones, weighted lap pad, sunglasses, preferred fidgets, chewables, a familiar blanket). Ask for “tell-show-do” (show the swab, then touch the arm, then do the swab) and topical anesthetics for blood draws or vaccines. Use visual schedules and first/then language (“first blood pressure, then headphones”). When feasible, book desensitization visits—brief, non-invasive stops that build tolerance without procedures. A good clinic will help you plan this; if they won’t, advocate up the chain.

Track medication changes against behavior and interoception. Anticholinergics, some stimulants, and several psychotropics can worsen constipation, thirst misperception, heat intolerance, or tachycardia—side effects that look like “behavior.” Log and report early.

The absence of complaint is not proof of comfort;

It’s often proof of communication barriers.

For example, an autistic child screaming during grocery shopping isn’t necessarily “acting out.” The store may have harsh lighting, echoing aisles, refrigerators humming, strangers brushing past, dozens of competing smells. You experience it as mildly busy; their brain experiences it as 100 decibels of chaos. Removing one stressor—noise-canceling headphones, sunglasses, shorter trips—can prevent meltdown entirely.

The same principle applies to adults. An autistic employee leaving a meeting early may be overwhelmed by overlapping voices or perfume. An autistic partner snapping after dinner may be reacting to the sound of chewing amplified by misophonia, not to you personally. Compassion begins when you assume overload, not malice.

Every sense can also be a source of comfort when approached safely. Weighted blankets engage proprioception and touch. Deep pressure calms the parasympathetic nervous system, lowering heart rate. Repetitive motion—rocking, pacing—restores vestibular balance. Temperature control, dim light, predictable sound all rebuild trust between body and environment. These aren’t “special accommodations.” They’re equivalent to you putting on sunglasses or turning down the radio when it’s too loud.

Understanding sensory reality also means accepting limits. There will be people who cannot regulate without support, and there will be days when even support fails. That isn’t lack of discipline; it’s biology. Empathy here means resisting the urge to moralize. You wouldn’t shame someone for flinching from a hot stove. Don’t shame someone for flinching from light or sound.

I know how tempting it is to look for quick fixes, to wish that understanding could equal control. But this isn’t about control. It’s about translation. The autistic body speaks a language most of the world never had to learn. When you stop demanding fluency and start listening to the accent, you begin to hear meaning.

I sometimes describe a meltdown as the body’s version of a system crash. Too many inputs, too little processing power, and the program forces a restart. It’s not willful; it’s protective. Afterward comes exhaustion, guilt, and often, fear of losing trust. The best thing anyone can do in that moment is create safety without judgment: reduce stimulation, offer water, speak softly or not at all, wait. The nervous system will reboot on its own if given space.

I also need to be clear: none of this is weakness. The same heightened perception that causes overload also fuels creativity, pattern recognition, and empathy of a different kind—the ability to feel the world’s textures deeply. It’s the reason many autistic people excel in music, art, engineering, data, environmental awareness. The cost of that sensitivity is constant calibration. The reward is seeing what others miss.

When you listen to autistic people talk about their experiences, you’re not just collecting anecdotes; you’re gaining field data from experts in a different operating system. That means lived experience isn’t a supplement to clinical data — it’s data itself. When policy or protocol ignores that, it builds its errors into the system. We’re not theoretical. We’re the test subjects who never left the lab. Our insights can improve design, education, medicine—if you take us seriously.

So when an autistic person tells you, “This fabric hurts,” or “That light is too bright,” or “I need five minutes alone,” believe them. Even if it seems trivial. Because behind that request is a lifetime of being told it is trivial, of being asked to prove pain that can’t be photographed.

All twenty-eight senses are real, measurable, and interdependent. They form the infrastructure of being human. Ignoring any of them leaves cracks where suffering hides. Recognizing them doesn’t make you overprotective; it makes you accurate.

If you want to help us, start where the world forgot to look. Ask why before how.

Ask what the environment is doing before judging the reaction.

Ask whether the goal is comfort or conformity.

And listen—not just with ears, but with respect for the data you can’t feel yourself.

Because autistic people don’t live in a different world. We live in the same world with the volume turned up, the filters off, and the stakes higher. When you learn to see through that lens, you start noticing the sensory violence that hurts everyone—the noise, the rush, the constant demand to perform calm in a system that never rests. The difference is that we can’t pretend it doesn’t exist. Maybe that’s not a flaw. Maybe it’s a warning.

You can think of this as a scientific fact, a moral lesson, or both: the body tells the truth. Ours just does it louder.

So please—listen. Not to fix us, not to pity us, but to finally understand the world you share with us.

The question was never “How do we make them behave?”

The question has always been “Why is the world built to hurt them—and what will we change once we hear them speak?”

🕊

If this resonated with you, and you want something you can use in real life

— for your home, team, or program — click here to read the Why Before How Caregiver Guide.

It’s the same truth, written as a manual: direct, clear, and ready to apply.