WHY BEFORE HOW: A Caregiver’s Guide to Understanding Behavior Through the Senses
- The Autistic Lens
- Oct 20
- 5 min read
Prefer the full essay version? Read the complete Why Before How article here.
It shares the same ideas in their original form — reflective, detailed, and written to help you understand the “why” behind this guide.
1. Core Principle
Every action communicates something.
Behavior is never random; it’s a message about comfort, pain, or environment.
The right first question isn’t “How do I stop this?” but “Why is this happening?”
This applies equally to autistic adults in residential programs and to children at home — the body doesn’t outgrow sensory pain; it only loses witnesses.
2. From Concern to Curiosity
“Fixing behavior” often suppresses communication.
Ignoring sensory pain teaches masking, not coping.
Masking = suppressing distress signals until they manifest as:
Meltdowns, shutdowns, burnout
Anxiety and digestive issues
Chronic stress and trauma
Goal: reduce causes, not reactions.
3. The Expanded Sensory System (28+ Senses)
Humans process far more than five senses. Each can be over- or under-reactive.
Understanding these differences explains most “mystery behaviors.”
Visual (Sight)
Fluorescent lights flicker ~120 Hz; autistic brains may detect this.
Visual clutter → constant micro-motion = fatigue.
Solutions: natural light, soft lamps, single-color walls, avoid flashing screens.
Visual seekers may find calm in sparkle or motion (lava lamps, glitter).
Auditory (Hearing)
Autistic people may process all sounds equally → overwhelm.
Symptoms: panic, trembling, covering ears, “shutting down.”
Support: noise-canceling headphones, quiet rooms, allow repetition (looping sounds).
Repetition = regulation, not obsession.
Olfactory (Smell)
Smells go straight to the limbic system → emotional overload.
Common triggers: perfumes, cleaners, food smells, bathrooms.
Fix: unscented products, strong airflow, scent-free policy.
Comfort: familiar or gentle scents can ground (specific soap, coffee, candle).
Gustatory (Taste)
Texture, temperature, aftertaste = separate sensory channels.
“Picky eating” often = defensive response to pain or panic.
Solutions:
Respect safe foods.
Introduce new foods slowly, one variable at a time.
Avoid power struggles; predictability = safety.
Tactile (Touch)
Touch can register as burning or electric shocks.
Light touch may hurt; deep pressure can soothe.
Supports: remove tags, use soft fabrics, offer weighted blankets or deep-pressure hugs only with consent.
Never force touch; consent restores trust.
Vestibular (Balance/Acceleration)
Governs motion and equilibrium.
Overload: dizziness, panic on elevators, car rides, or spinning.
Under-sensitivity: craves motion (rocking, bouncing).
Response: allow controlled movement breaks; avoid abrupt motion changes.
Thermoception (Temperature)
Dysregulated temperature sense common in autism.
Overheat or chill rapidly without noticing.
Safety steps:
Check skin temperature directly.
Adjust environment early (fan, layers, cool towels).
Don’t assume comfort from appearance.
Proprioception (Body Awareness)
Difficulty sensing limb position → clumsiness, dropping items, bumping walls.
Help: weighted tools, stretching, “heavy work” (pushing/pulling), body-map visuals.
Pressure = grounding.
Nociception (Pain)
Pain thresholds vary drastically.
Hypo-sensitive → may not notice injuries; hyper-sensitive → feel touch as stabbing.
Rule: Assume pain first for any sudden behavior change.
Observe for:
Guarding limbs
Refusing care or meals
Night waking
Facial tension, self-injury, withdrawal
Use FLACC or similar proxy pain scales.
Magnetoception / Spatial Orientation
Some have excellent direction sense; others extreme disorientation.
Support: consistent spatial cues, landmarks, color-coded doors.
Sexual Sensory Response
Varies from hypersensitive to hypo.
Affecting hygiene, relationships, and body image.
Approach with privacy, consent, education, and non-judgment.
Interoception (Internal Body Awareness)
The most critical for health and behavior.
Involves:
Hunger / fullness
Thirst
Heartbeat / breathing
Bowel and bladder urges
Hormonal and blood-pressure changes
When impaired:
People may not feel hunger, thirst, pain, or sickness until severe.
Or they may feel them constantly and panic.
4. Interoception in Daily Care
Hunger / Fullness
Missed signals → overeating or not eating.
Track patterns; provide consistent meal schedules.
Avoid “clean your plate” pressure.
Thirst
Dehydration = irritability or fatigue.
Strategy:
Visual cues (clear bottles, color-coded cups).
Scheduled hydration times.
Flavor or temperature adjustments for aversion.
Elimination (Toileting)
Under-reporting → infections, constipation.
Over-reporting → frequent trips or accidents.
Treat both with respect; never shame.
Use scheduled bathroom checks + fluid tracking.
5. Communication Framework
When speech is unreliable:
Assume every behavior communicates.
Keep AAC accessible:
Yes/No cards
Picture boards
Gesture / sign
Text-to-speech apps
Body maps for pain location
Build a shared “signal dictionary”:
Document what each unique action tends to mean.
Keep it visible for all staff.
6. Low-Arousal Care Techniques
Goal: Prevent distress before crisis.
During personal care:
Warm the room.
Dim bright light.
Limit noise and voices to one at a time.
Narrate steps calmly (“Water on feet first… now ankles”).
Offer small, real choices.
Count down (“three more strokes”).
Provide exit cue (“all done, towel time”).
Pause if distress rises — wait, don’t push.
If self-injury or aggression appears:
Treat as pain or panic language first.
Rule out medical and sensory causes before labeling “behavioral.”
Safety without punishment; rebuild trust afterward.
7. Quick Daily Sensory-Health Checklist (1 minute)
Category | Ask Yourself |
Environment | Lights too bright? Noise or smells overwhelming? Temperature okay? |
Body Basics | Slept? Ate? Drank? Bowel movement? Pain signs? |
Clothing / Gear | Tags, seams, damp fabric, tight shoes? |
Predictability | Visual schedule up? Transitions warned? Choices offered? |
Communication | AAC ready and modeled? Yes/no card visible? |
Fix one mismatch → prevent most meltdowns.
8. Healthcare & Medical Advocacy
Autistic people are under-treated for pain due to flat affect or delayed reporting.
“No complaints” ≠ comfort.
Request thorough exams for any behavioral change.
Schedule regular preventive checks (teeth, skin, GI, joints).
Medical Visit Strategies
Ask for:
Quietest room, minimal staff present.
Dim lighting if possible.
One voice at a time.
“Tell-show-do” steps before procedures.
Topical anesthetic for needles.
Bring sensory supports: headphones, weighted pad, sunglasses, familiar object.
Practice short desensitization visits if feasible.
Track med changes against hydration, bowel, and mood data.
9. Recognize and Reduce Overload
Common overload mix:
High temperature
Scratchy clothing
Flickering lights
Hunger or dehydration
Emotional stress
Unexpected transitions
Response Plan
Remove sensory triggers where possible.
Offer quiet and space first.
Meet basic needs (drink, bathroom, rest).
Communicate through calm presence.
Resume routine only when calm returns.
Meltdown = system reset, not defiance.
10. Reframing the Goal
Comfort > compliance.
Dignity > speed.
Listening > control.
Every sense understood = one less crisis.
Understanding sensory patterns prevents neglect and restores trust.
11. Strengths and Balance
Heightened perception enables creativity, pattern recognition, environmental awareness, and empathy.
Support reduces harm; it does not erase difference.
Sensory diversity is part of human intelligence, not a defect.
12. Evidence Snapshot
fMRI: stronger connections between sensory and emotional regions → quicker emotional activation.
White-matter differences explain cross-sensory “painful” experiences (sound felt as touch).
Dysautonomia, GI distress, and HPA-axis dysregulation frequently co-occur with sensory overload.
Takeaway: Sensory-pain reactions are physiological, not behavioral. Treat them like asthma, not attitude.
13. What To Remember
The body tells the truth — listen to it.
Behavior is communication.
The absence of speech is not the absence of meaning.
Compassion starts with curiosity.
Ask why before how.
14. The Guiding Questions
Why is the world built to hurt them?
What can I change in this moment to make it gentler?
What will we change once we truly hear them speak?
The question was never “How do we make them behave?”
It was always “Why is this happening — and what will we do differently once we understand?”
