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All Tangled Up In Autism And Chronic Illness

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Autism and Chronic Illness: a Comprehensive Guide

Healthcare Navigation

Communication Differences and Medical Advocacy

Autistic people communicate differently than Neurotypical patients expect—preferring directness, using non-speaking forms of communication like AAC (Augmentative and Alternative Communication) devices, or requiring written communication. Many chronically ill Autistic people experience medical trauma, creating significant barriers to trusting healthcare relationships and engaging with providers.

Taking an advocate (parent, carer, or independent advocate) to medical appointments is valid and helpful for remembering information, processing questions in real-time, and ensuring accountability if professionals dismiss concerns. Communication should always be directed at the patient, not just the advocate. Using communication cards, pre-written letters, or AAC devices is completely acceptable and should be supported by healthcare professionals. Setting boundaries about touch before examinations, requesting advance notification before physical contact, and establishing clear consent protocols prevents compounding sensory overwhelm with medical procedures.

Navigating appointment scheduling itself requires accessibility: many medical services only accept phone calls, which creates barriers for Autistic people and those with social anxiety. Requesting reasonable adjustments including email, text, relay services, or online booking is essential. Before appointments, ask for detailed information about procedures to reduce uncertainty-related Anxiety. For medical tests and procedures (MRIs, colonoscopies, ultrasounds, contrast dye procedures), Sensory-friendly Accommodations include: Sensory-friendly clothing (no metal for MRIs), headphones with music choice, the ability to bring stim toys, taking breaks when needed, and discussions beforehand about specific Sensory needs.

Many Autistic people experience medical gaslighting—being told symptoms are “all in your head,” dismissed as exaggeration, or sent doctor-to-doctor with each one saying the previous one was wrong. Keeping detailed symptom logs, recording appointments (where legal), bringing advocates, and debriefing with trusted people afterward provide protection and documentation.

Interoception Challenges and Symptom Reporting

Interoception—the ability to sense what’s happening internally with one’s body—is often significantly impacted in Autistic people, creating specific healthcare challenges. Autistic individuals may struggle with awareness of hunger, thirst, temperature regulation, pain location and intensity, and emotional regulation. This fundamentally changes how they experience and report medical symptoms.

Standard pain scales (1-10 numerical ratings) feel abstract and unreliable for many Autistic people, providing less useful clinical information than alternative approaches. Instead, Autistic patients and doctors should work collaboratively to find what works: describing whether pain is better or worse than baseline, locating it to specific body parts, noting whether it’s a familiar pain versus something new, comparing to previous experiences, or using descriptive rather than numerical language. Symptom logs using apps, body scans checking in with different body parts systematically, and color-based or descriptive approaches help bridge communication gaps.

Some Autistic people describe pain in terms of texture (“spiky,” “sharp,” “heavy”) rather than intensity, which healthcare providers should validate as clinically useful information rather than dismissing as imprecise.

Hyposensitivity to internal signals means Autistic people often don’t recognize toilet needs until urgent, don’t know when they’re hungry or thirsty until extreme, and may not notice dangerous heat or cold until reaching dangerous levels. This creates compounded challenges in chronic illness management requiring specific hydration, eating patterns, or bladder management. Supports include visible reminders (phone alarms, sticky notes), scheduling meals and bathroom breaks at regular times, habit stacking (linking actions to existing routines), and using apps like Tiimo with reminders on smartwatches.

Medication Management and Treatment

Finding the right medication requires systematic tracking of symptoms to identify which medications work. Apps, body scans, or written logs help monitor changes over time. Breakthrough pain (persistent pain despite medication) is common and should be discussed with doctors. Multiple medications may contraindicate each other, requiring doctors to prioritize which is most important for quality of life. Side effects should be monitored but most are temporary; Anxiety about taking medication is valid and should be discussed with doctors rather than hidden.

Practical medication strategies include: setting phone alarms or using medication reminders apps, placing medications next to familiar routines (like toothbrushes), using dosette boxes for multiple medications to reduce executive functioning burden, and for those with Sensory difficulties around pills, exploring options like dissolving medications in juice, yogurt, or pudding (always checking with doctors first, as not all medications can be altered).

Physical Therapies and Psychological Support

Physiotherapy can be difficult due to Sensory issues around touch, coordination challenges, or executive functioning difficulties maintaining exercise regimes. Clear communication beforehand about needs—requesting step-by-step breakdowns, demonstrations rather than hands-on adjustment, and minimized unnecessary touch—helps. Visual instructions provided in writing enable reference at home. Reminders around the house (like heel raises placed next to the kitchen sink) Support compliance with Therapy routines.

Psychological therapies aren’t cures for chronic illness or Autism but can help with acceptance, Anxiety, trauma processing, and Depression. However, therapies designed for allistic/Neurotypical people often don’t work well for Autistic individuals. Effective adaptations include: clear language with concrete examples rather than abstractions, structured sessions with visible agendas, avoiding metaphorical or indirect communication, and alternative modalities like art therapy, music therapy, EMDR, or hypnotherapy.

The physical environment of Therapy spaces matters significantly—minimizing bright lights, ticking clocks, busy or chaotic waiting rooms, and sensory overwhelm helps Autistic people engage with treatment rather than becoming dysregulated during the appointment itself.

Medical Appointments: Surgery, Emergency Departments, and Procedures

Surgery presents multiple challenges beyond the procedure itself: Sensory issues around pain and discomfort during preparation and recovery, routine disruption, uncertainty about how symptoms will fluctuate, and Anxiety around travel logistics and asking for help. Pre-surgery Sensory Accommodations include wearing comfortable clothing, requesting detailed information about the process, and discussing pain management beforehand.

Accident and Emergency (A&E) departments are Sensory nightmares—busy, loud, with long waits and unpredictable procedures. Practical Support includes bringing prepared items: ear defenders, stim toys, comfortable clothes, phone charger, hygiene items, and snacks. Staff often misunderstand Autistic patients, particularly around pain communication and interoception differences, assuming someone isn’t in pain because they’re not expressing it “correctly.”

Communication aids help prevent misunderstandings: communication cards detailing conditions and communication needs, one-page medical profiles, sunflower lanyards or medical ID bracelets alerting to hidden disabilities. Creating “This Is Me” documents adapted for your specific needs, detailing conditions, communication needs, interests, and when to call an ambulance, provides crucial information to emergency staff.

Daily Living Strategies

Executive Dysfunction and Memory Support

Memory issues affecting all daily tasks stem from executive dysfunction, brain fog, or memory loss common in both Autistic and chronically ill people. These aren’t shameful or signs of personal failure but common Neurological and physiological impacts. Support strategies include: visual aids (sticky reminders, timetables on walls), designated storage places for frequently lost items, location-tracking tags on phones and keys, apps for symptom/appointment tracking, and written lists for commonly forgotten tasks.

Breaking tasks into smaller visible steps, using checklists, and setting phone reminders transforms “impossible” tasks into manageable ones.

Cooking and Food Preparation

Cooking is difficult due to fine motor challenges, exhaustion from prep work, and executive functioning around meal planning. Practical adaptations reduce barriers: batch cooking and freezing portions for future days, buying ready meals and pre-prepared ingredients without shame, using stools to sit while chopping, having multiple timers (setting reminders when one isn’t enough), keeping a meal plan visible, using food box services with pre-portioned ingredients and simplified instructions, and choosing one-pot meals requiring minimal steps.

Microwaves, air fryers, and slow cookers are often more accessible than conventional ovens because they require less bending, standing, fine motor control, and monitoring. Kitchen organization—hooks for frequently used items, grouped equipment by task, accessible storage at waist height—reduces overwhelm and Sensory processing demands.

The book emphasizes: “something is better than nothing.” Eating the same food repeatedly or snacking instead of cooking full meals is valid and preferable to not eating. Frozen vegetables are predictable texturally and don’t require prep work. Ready-made meals during flare-ups or low-capacity periods aren’t moral failures—they’re survival strategies.

For those with restricted diets due to ARFID (Avoidant Restrictive Food Intake Disorder), Autism, or chronic illness dietary requirements, eating within safe foods while ensuring adequate nutrition (potentially through supplements after consulting doctors) is the correct approach. The Autism-Friendly Cookbook by Lydia Wilkins (2022) offers additional resources tailored to Autistic Sensory and Executive function needs.

Getting Dressed and Sensory-Friendly Clothing

Sensory defensiveness and pain make dressing difficult. Seeking sensory-friendly clothing without tough buttons, problematic seams, or uncomfortable labels is essential. Planning outfits the night before or using visual supports reduces morning decision fatigue. A capsule wardrobe (limited items that coordinate) reduces decision fatigue and laundry frequency.

Adaptive tools like zip pulls or shoe horns help with fine motor challenges. Velcro instead of laces is not childish—it’s practical accessibility. Some people benefit from owning multiples of the same garment in different colors, eliminating decision-making entirely. Unconventional solutions like maternity jeans for wheelchair users (they don’t dig in when seated) demonstrate that “correct” clothing is irrelevant—what matters is comfort and accessibility.

Undressing at day’s end is equally difficult; keeping pajamas with medications and skincare as part of the night routine removes the barrier to changing. Temporary laundry solutions (leaving clothes in piles or bags rather than hanging or folding immediately) are acceptable. Changing clothes regularly for freshness matters more than having them stored “correctly.”

Laundry Management

Laundry has multiple steps (sorting, loading, transferring, drying, folding, storing) and is often neglected due to executive dysfunction or physical difficulty. Strategies include: small wheeled baskets making transport easier, pods or gels instead of heavy detergent bottles, color catchers enabling single mixed loads, scented or scentless products matching Sensory needs, net laundry bags keeping items organized, grabbers for retrieving stuck clothing without bending, and maintaining multiple sets of towels and bedding to reduce urgency about completing washing.

Optimizing equipment placement—positioning washing machines and dryers next to each other with correct hinge placement to reduce physical strain—makes the task less taxing. Open storage (drawers, baskets) eliminates the extra step of opening/closing cupboard doors. Matching all socks removes the pairing work. Don’t pressure yourself to fold immediately—some people find task completion helpful; others need breaks between phases.

Gamifying tasks (20-minute timed challenges paired with shows or podcasts) and body doubling (doing tasks alongside another person, whether in-person or on video call) increase motivation and completion.

Personal Hygiene and Sensory Adaptations

Sensory aversion, joint pain, dizziness, and executive dysfunction complicate hygiene routines. Sample different toiletries to find Sensory-friendly options (unscented, unflavored, specific textures). Alternatives to full showers include: dry shampoo, disposable shampoo caps, or baby wipes for surface cleaning. Shower chairs help with standing difficulties or dizziness. Pump bottles prevent the hand strain of squeezing. Long-handled tools Support joint issues. Scheduling hygiene tasks or using visual supports ensures they happen.

Listening to music, podcasts, or audiobooks during hygiene provides distraction and makes the time pleasant. Changing clothes regularly contributes to freshness and dignity even if full showers aren’t possible. Unscented or unflavored products reduce aversion. Adaptive tools are available online or from mobility shops. When affordable, accessing hygiene through professional services (spas, manicures, hairdressing services) provides relief and normalizes disability-related needs.

Daily showering is unnecessary—alternative cleaning methods are completely valid and often necessary for disabled people.

Toilet Needs and Bodily Functions

Hyposensitivity to interoception means Autistic people often don’t recognize toilet needs until urgent, creating challenges compounded by chronic illnesses causing incontinence, constipation, UTIs, or difficulty with the physical process of undressing/toileting. Creating routines (specific bathroom times, habit stacking—bathroom before/after another task like breakfast) rather than relying on body signals ensures regularity.

Supporting bowel/bladder health despite interoception difficulties requires scheduled toilet times, adequate water intake (with reminders), fiber intake (tracking with apps if needed), and recognizing that accidents and difficulties aren’t shameful despite societal messaging.

Cleaning and Household Management

Many Autistic and chronically ill people neglect cleaning due to practical barriers (pain, fatigue), Sensory difficulties (smells, textures), or motivational challenges from executive dysfunction. Mini handheld vacuums or robot vacuums reduce strain compared to standard vacuums. Antibacterial wipes and handle-sponges minimize full submersion in water. Frequent small cleanings (daily 10-minute tasks) beat occasional large overwhelm-inducing cleaning sprees.

Extended-handle dusters and mops allow cleaning while sitting. Cleaning rotas encourage one task daily rather than procrastination-then-marathon. Dishwashers reduce energy demands. Trays or boxes in rooms consolidate items needing transport rather than individual trips. Gloves help with touch aversion or chemical sensitivity. Grabbers pick things up without bending.

Visual task reminders and step-by-step methods prevent overwhelm. Spacing tasks using pacing principles prevents exhaustion. Minimalism—reducing items, kitchen equipment, toiletries, or wardrobes—eases overwhelm and makes cleaning manageable.

Gamifying timed challenges or simultaneously watching shows/podcasts improves motivation. Body doubling (having someone present while cleaning, in-person or via video) increases completion. Paper plates or disposable items during low-capacity periods aren’t moral failures—they’re survival strategies enabling basic functioning.

Running Errands and Money Management

Online shopping and delivery services reduce in-person errand strain for those with Sensory overwhelm, mobility issues, or executive dysfunction barriers. Returns can often be done via mail or pickup services; setting phone reminders prevents missing return windows. Digital banking reduces need for in-person bank visits. Collecting information beforehand (what to ask, restricted items) eases post office trips.

Money management is complicated by variable or low income, high disability-related costs (medications, branded Sensory-friendly foods, accessibility equipment), executive dysfunction making management slip, memory issues, and complex benefit access challenges. Standard budgeting advice assumes stable income and executive functioning, which isn’t accessible to many disabled people.

Helpful strategies include: writing due dates and subscription dates in multiple places, using bank functions like rounding savings, using automatic savings apps (like Plum), regularly viewing bank accounts for visualization making spending tangible, bulk-buying safe foods around payday, bookmarking desired items to assess actual need before purchasing, checking benefit eligibility regularly, and putting income percentages to savings when possible.

Subscriptions avoid repeated thinking but may lead to forgotten cancellations; deciding case-by-case prevents money waste. Emergency funds, ISAs, cashback websites, bulk-buying frozen and canned foods around payday, and putting income into savings then allocating weekly amounts help manage limited budgets. Recognizing that managing money while disabled is genuinely harder—not a character flaw—enables self-compassion and seeking Support.

Dental Care and Personal Services

Dentists are difficult Sensory environments often involving pain, unpredictability, and touch without warning. Avoiding appointments worsens problems but carries no shame—the system failed you. Dentists can accommodate through: ear defenders, earplugs, or noise-canceling headphones, Sensory toys or fidgets, companion presence, extended appointments (treating processes as separate visits), flavored products, visual explanations of procedures, adjusted lighting or sunglasses, and minimized unnecessary touching. Some dentists specialize in disabled or anxious patients. Requesting to avoid main waiting rooms if possible prevents additional Sensory input. Printing explanations of Autism or chronic illness helps staff understand needs.

barbering involves Sensory environment issues, touch discomfort, small talk expectations, and pain from positioning. Options include: cutting hair at home, having family members cut it, or having someone come to your house. Supports for salon visits include: dry cuts (no hair washing), Sensory tools or fidgets, off-peak timing avoiding crowds, and short hair reducing daily management needs. When affordable, accessing these services through professionals provides relief and removes barriers to hygiene and self-care.

Hobbies, Sports, and Joy

It’s important to prioritize joy despite chronic illness and Autism, even if hobbies require significant energy. Not all people can engage in traditional outside activities, but alternatives provide fulfillment: online communities and groups, at-home hobbies, activities done with trusted friends, bedside activities (origami, language learning, puzzles, documentaries), and adapted accessible sports (wheelchair basketball, adapted yoga).

Finding hobbies through subscriptions, borrowing from libraries, or trial-and-error helps identify genuine interests. When worsening conditions make previous hobbies inaccessible, grief processing before exploring alternatives honors both the loss and new possibilities.

Special interests and hyperfocus deserve schedule space—not as afterthoughts but as essential regulation and identity tools deserving prioritization equal to medical tasks.

Sleep Management

Insomnia and disrupted sleep are very common in Autistic individuals and those with chronic illness. Painsomnia (heightened night pain), sleep disturbances throughout the night, nighttime treatments, and physical discomfort from positions complicate sleep for chronically ill people. Bad sleep feeds chronic pain, fatigue, Anxiety, and Sensory overwhelm—creating vicious cycles. Sleep quality directly impacts pain, fatigue, Anxiety, and Sensory regulation, making it foundational to managing everything else.

Medication (melatonin, sleeping pills, pain medication) may be necessary and should be worked out with doctors. Traditional “sleep hygiene” often doesn’t work for disabled individuals due to Sensory differences. Helpful strategies include: white, brown, or pink noise or earplugs (matching individual Sensory needs), blackout curtains, Sensory-friendly bedding (removing uncomfortable labels, using preferred detergent, consistent textures), journaling or planning before bed to clear racing thoughts, experimenting with pillows and body supports (batwing pillows, V-pillows, full-body pillows, specific mattress types), pre-sleep activities avoiding brain stimulation (reading, coloring, puzzles, gentle stretching), sunset lights for circadian rhythm Support, consistent sleep times when possible, and if not asleep after time, getting up and moving to reset rather than lying awake frustrated.

Autistic people often have delayed sleep phases with optimal bedtimes hours later than conventional schedules—exploring whether this is possible in your life situation may improve sleep quality. Dietary factors affect sleep: early evening eating for those with GI symptoms, caffeine sensitivity varying individually, and daytime nap timing affecting nighttime sleep (keeping naps short—20-30 minutes—or timing them strategically). Sleep requires trial and error; be kind to yourself and try unconventional approaches if standard advice fails.

Public Transport Navigation

Public transport presents multiple challenges involving Sensory input, Anxiety about transitions, social norms, and physical accessibility. Practical supports include: practicing routes beforehand, studying maps and using regional transport apps, keeping tickets/payment easily accessible in cross-body bags, using Google Maps to preview stations and environments before arrival, researching passenger assistance programs, booking priority or wheelchair seating near luggage racks, bringing Sensory equipment (headphones, stim toys), using activities to manage Anxiety during journeys, and carrying snacks and drinks for symptom management.

For air travel, many airports offer special assistance programs and online videos showing security procedures and airport layout, helping reduce Anxiety from unpredictability and Sensory overwhelm.

Mobility Aids As Tools for Independence

Mobility aids (walking sticks, crutches, rollators, wheelchairs, scooters) are tools for independence, not failures or “last resort” options signaling decline. They reduce pain, fatigue, dizziness, and Support independence through increased activity. Indicators for usefulness include: fatigue during supermarket trips, difficulty standing in queues, frequent falls, pain with short-distance walking, or inability to leave home without Support.

Many people use different aids on different days based on current needs—this flexibility is normal and healthy. Professional consultation (physiotherapist, occupational therapist, doctor) is recommended for finding appropriate equipment. Adaptations exist addressing Autistic needs: tilted handles for wrist pain, noise-cancelling headphones for power chair motors, kinesiology tape for mobility Support. Users report increased independence, ability to travel, reduced pain and fatigue, prevention of post-exertional malaise (PEM), and improved confidence and quality of life.

Holidays and Celebrations

Festivities present multiple challenges: routine changes, altered mealtimes, busier and louder shops, gift-giving expectations, Sensory triggers (lights, decorations, fireworks), and increased social demands. Support strategies include: maintaining personal routines (morning and night rituals, solo time, consistent mealtimes), ensuring safe foods are available, shopping at off-peak times or online, opening gifts privately and thanking people later (asynchronously), using ear defenders and sunglasses, taking breaks from socializing, and remembering it’s acceptable if celebrations don’t look “normal.” The key message is removing pressure and accepting that uncomfortable periods are temporary.

Sensory Processing and Regulation

Personal Sensory Profiles

Building a personalized sensory profile documenting hypersensitivities, hyposensitivities, helpful aids, and prevention strategies across all senses (sound, smell, taste, texture, light, touch, temperature, proprioception, vestibular, and interoception) helps navigate healthcare appointments, workplaces, education, and daily life. Understanding whether you’re hypersensitive (quick to detect stimuli, finding them overwhelming) or hyposensitive (slower to detect, sometimes seeking stimulation) for each sense enables targeted Accommodations.

Crucially, individual thresholds vary and responses aren’t consistent across situations or times—your profile documents current needs while acknowledging change over time or across contexts.

Sound Sensitivity

Hyperacusis (hearing sounds as intrusive and louder than others perceive, including electricity hum) or misophonia (decreased tolerance for specific sounds like chewing, causing anger or distress). Coping strategies include: ear defenders, earplugs, or noise-canceling headphones, eating away from others if sound-sensitive, taking time out during overwhelming events, decompressing after noisy environments, and using self-checkouts to reduce verbal interaction. Music or background sound helps some; silence causes discomfort for others.

Smell Sensitivity

Smell sensitivity is challenging because smells can’t easily be blocked like other senses and persist while sleeping. Hyposensitive people may not detect certain smells or actively seek them (enjoying cooking, candles, strong scents). Hypersensitive people find smells too intense, strong, synthetic, or problematic when combined. For people with nausea (common in chronic illness), smells become particularly difficult. Strategies include: buying unscented cleaning products or consistent familiar brands, chewing gum to distract from or manage nausea, requesting others not wear perfume around you.

Taste and Texture Sensitivity

Taste and texture sensitivity significantly impact eating. Taste hypersensitivity involves sensitivity to sweet, salty, bitter, or sour flavors; many Autistic people limit themselves to bland diets. Texture equally impacts taste processing and flavor strength. ARFID is common in Autistic individuals; consulting doctors about supplement needs if diet is restricted helps address nutritional gaps. Hyposensitive people may seek spicy, sour, strong, or textured foods, adding extra salt or condiments, or sometimes overeating seeking these sensations. Some experience pica (eating non-edible items like grass or sponges).

Touch Sensitivity

Touch sensitivity manifests as hypersensitivity (pain from being touched, difficulty washing, clothing texture sensitivity with problematic labels or seams, struggles with bandages/plasters/medical gels) or hyposensitivity (seeking deep pressure, tight hugs, weighted items, varied textures, high pain thresholds, not feeling heat until burning). Strategies for hypersensitivity include: wearing gloves, using sponges or mitts to apply gels, having others apply products, removing clothing labels, wearing preferred textures, using aids for washing, using weighted blankets or lap pads for deep pressure grounding, requesting permission before hugging, asking people to notify before touching.

Supports for hyposensitivity include: texture boxes, chew toys or chew jewelry, prioritizing Sensory-safe items, and recognizing deep pressure needs as valid Sensory regulation.

Light and Vision Sensitivity

Light and vision sensitivity manifests as hypersensitivity (pain from light, difficulty processing outside environments, bumping into things, distorted or moving vision, struggling with flickering lights, disliking bright colors, needing to squint, screen difficulty) or hyposensitivity (blurred peripheral vision, struggling with depth perception, difficulty seeing patterns or small details). When combined with chronic illness, nausea or migraines may intensify with problematic light levels. Healthcare environments with harsh fluorescent lighting create particular challenges. Strategies include: wearing sunglasses or blue-light glasses, using pastel wall colors, installing blackout curtains and non-fluorescent lighting, working at desks against blank walls, reducing clutter, using strategic lighting with remote-controlled lamps allowing immediate adjustment.

Energy Management and Pacing

Preventing Boom-Bust Cycles

Pacing prevents “boom and bust” cycles where good days trigger overactivity causing symptom flares or crashes lasting days. It’s not about suddenly managing everything but working within current abilities, accepting limits, and gradually increasing activity only when bodies adapt. Pacing accounts for rest without underactivity. Life quality extends beyond productivity—pacing includes hobbies, socializing, self-care, eating, and washing.

Spoon theory (Christine Miserandino, 2003) uses spoons as energy units with different tasks costing different amounts. Some people prefer “battery theory” where healthy people charge to 100% overnight while chronically ill people wake to perhaps 70% (variable daily).

Energy switching paces activities requiring different energy types instead of completing one task fully then resting (e.g., laundry, then reading, then podcast, then rest prevents single-task overwhelm). Traffic-light systems (red = rest, yellow = gentle activity, green = higher activity) or numbering systems rate task energy, determining stackable daily tasks. Pomodoro Technique (20 minutes work, 5-minute breaks, 15-minute break after 4 sessions) helps; many adapt to shorter work periods with longer breaks matching their capacity.

Baseline activity is activity level not triggering symptom impact—variable daily but includes non-negotiable work/education plus important routines (morning rituals, bedtime routines, daily movement, Stimming time). Recognizing special interests (intense focused activities like crocheting or studying specific topics) are regulation tools deserving schedule time. Breaking bigger activities into smaller pieces identifies where limits exist (hair and makeup as separate tasks: base-makeup and eye-makeup with inter-rest). Time limits help interoception struggles preventing hyperfocus from causing pain/fatigue exacerbation.

Distinguishing flare-ups from autistic burnout (absolute exhaustion from navigating Neurotypical world, loss of skills, increased Sensory overload proneness, Emotional dysregulation, feeling unable to speak; lasting long periods; not resolved by physical rest alone) helps target appropriate supports.

Supporting Autistic Pacing While Managing Executive Dysfunction

Executive dysfunction complicates pacing because planning, organization, and time management difficulties mean struggling with boom-bust cycles (planning deficit), distraction doing tasks too long, or sitting unable to start using energy on desperation rather than action (compounded by brain fog). Routine-loving Autistic people struggle when pacing requires moving or omitting activities for rest—desire to continue routines can trigger over-exertion. Sensory overload during tasks may interrupt completion requiring rest-block task finishing, increasing fatigue. Some Autistic people find resting unstimulated creates understimulation making rest difficult. Interoception struggles mean not noticing body tiredness or pain until too late, pushing through activity beyond safe limits.

Methods supporting Autistic pacing include: energy switching (switching between activities using different energy types addressing understimulation during rest and executive dysfunction), breaking bigger activities into smaller pieces, time limits helping interoception struggles, recognizing special interests as regulation tools, distinguishing flare-ups from Autistic Burnout, using visual supports (timetables, checklists, color-coding), body doubling (doing tasks with another person), and accepting that complete unmasking may be unsafe—even unmasking partially while Autistic reduces unsustainable self-expectations.

Routine Disruption and Adaptation

Autistic people cherish predictable, controlled routines, but chronic illness causes interruptions (symptom flare-ups, extended rests, doctor’s appointments). Instead of full-day routines, shorter completable-anytime routines help: “morning” routine (getting out of bed, washing, breakfast) not tied to specific times; pre-Therapy routines (changing clothes, doing hair, filling water, getting lanyard) enabling emotional/physical transition despite varying appointment times. Tasks taking longer than baseline can have more time blocked standard—finishing early provides time cushion. Flare-up routines (fresh pajamas, wet wipes, deodorant, plus pleasant low-energy activities like audiobooks) maintain structure during crashes.

Emotional regulation during routine changes benefits from meditation, breathwork, Stimming, coloring, comfort shows, weighted blankets, and longer-term Therapy/DBT skills. The book recommends Neurodivergent Friendly Workbook of DBT Skills by Sonny Jane Wise (2022).

Education and Employment

University Selection and Preparation

Disabled students should consider physical accessibility of environments, disability service quality, appropriate accommodation options, disabled student communities, healthcare access, transport, and proximity of essential locations. Campus-based universities with flat terrain and built-in accessibility (ramps, lifts) often work better than spread-across-city layouts. Social media, forums, YouTube, and direct contact with disability services provide real-life insights. Visiting universities in person reveals accessibility that photos don’t show.

Course selection matters—choosing programs with more coursework than exams, remote options, or accessible practicals can Support continued engagement.

Pre-university preparation includes: informing universities of disabilities and impact; checking for grants/scholarships (like Disabled Students’ Allowance in UK); planning for care needs; auditing daily home life to identify needed aids and Accommodations; experimenting with different aids especially for new tasks; and visiting accommodation when possible to feel settled before arrival.

Managing University Structure and Study

Early weeks combine emotional upheaval, structural change, and increased demands. Prepare easy microwave or quick meals to ensure eating during busy periods. Set out medications and treatments visibly or use checklists preventing forgetting. Balance involvement with rest avoiding flare-ups or Burnout forcing complete withdrawal. Consider disclosing disability status to those living with you, classmates, or both—each choice has validity. Alcohol culture can worsen Sensory needs, dizziness, symptoms, or medication interactions; many universities provide alternative events (games, films, crafts). If attending nightlife, use earplugs, stay hydrated, take rest breaks, go home earlier, prepare medications, wear sunflower lanyards or medical ID cards.

Managing lack of structure requires strong morning and evening routines (anchoring chaotic middle days), visual timetables and checklists, finding suitable planners (digital, paper, or hybrid), building routines around timetabled lessons and recurring appointments, treating university like a job with set working hours (though not necessarily 9-5), and maintaining consistent wake/sleep times when possible. Physiotherapy or exercise programs should be scheduled strategically—at day’s end or low-demand days.

Study and Revision Methods

Study accessibility requires different adaptations than non-disabled peers: using online programs (typing notes, flashcard programs, mindmaps) instead of handwriting, speech-to-text (speaking instead of typing), text-reading software (lessening processing load), muted or pastel colors reducing visual intake, overlays or colored paper experimentation, varied study methods (reading, YouTube, podcasts, short flashcards more accessible on bad days than full past exam questions), and flashcard or poster placement around home for frequent review.

Study leave before exams helps some (rest opportunity, personal pace) but hinders others (focus/structure struggles)—discussing Support needs with schools enables personalized approaches.

Exam Accommodations

Many schools and exam boards formally approve Accommodations including: extra time or rest breaks, separate quiet rooms allowing movement, word processors or scribes instead of handwriting, readers for questions, adaptive equipment (writing slopes, pen grips), regulated memory materials, stim toys, ear defenders, weighted lap pads or vests, headphones for listening exams, and provisions for eating/drinking if medically necessary.

Self-directed strategies (no formal approval needed) include wearing layers for temperature regulation, using checklists and visual timetables, highlighting key words, keeping a watch visible, visiting exam rooms beforehand, resting more before exams, and decompressing afterward.

Living Independently at University

Not all Autistic and chronically ill people can live alone—this is valid. If attempting independent living, university offers heightened security and welfare compared to standard flats. Key responsibilities include laundry, cooking, medical appointments, rent/bills, shopping, and bedding changes. Reduce stress through: food delivery services or smaller regular shops, direct debits for bills, easier methods (coverless duvets, laundry tablets), recurring appointments at same time/day.

Homesickness or grief about missing home environment and supports is valid; maintain contact through phone calls or bring items from home.

Job Applications and Workplace Adjustments

Employers must make adjustments for disabled candidates. Request: advance questions, Sensory-friendly rooms (lower lighting, quiet), alternative application/test formats (verbal, video), extra time for tests and responses, and interviews at preferred times. Disability charity Scope recommends asking about process details, explaining inaccessibility and specific needs, sending requests via email for documentation, and seeking Support if refused. Autistic candidates may want to describe communication differences (like not maintaining Eye contact) in advance.

Employers must provide reasonable adjustments including: flexible work schedules or part-time options, wheelchair ramps, ergonomic desks, Support workers, lighting changes, quieter rooms, work-from-home options, time for treatments, or frequent breaks. Refusal or failure to compromise can be classified as discrimination; contact Citizens’ Advice Bureau or similar services if Support is denied.

Workplace Environment Optimization

Office-based workers can adapt their space through: ear defenders or music, Sensory aids for regulation and fatigue reduction, corner/wall positioning or screens reducing Sensory input, speech-to-text or reader software, clearly communicating expectations and instructions with colleagues, detailing access needs in email signatures, keeping necessary items within reaching distance, requesting extra processing time.

Non-office workers (hospitality, retail) can request short breaks during overwhelming periods, lower music volume, and shorter shifts preventing overwhelm buildup.

Remote work reduces commuting stress, Masking fatigue, and environmental overwhelm. Optimize by: establishing a specific work location (desk, table, separate room) supporting work-home transitions, setting up Sensory environment with aids and preferred lighting, making meetings accessible (colleagues keep muted when not speaking), scheduling tasks around energy patterns, and having medications and routines organized for access.

Freelancing and Self-Employment

Many chronically ill and Autistic people find traditional employment inaccessible but thrive with self-employment or freelancing. Benefits include flexibility working accessible hours around medical appointments, in preferred environments with chosen people, and often from home. Challenges include uncertain income, lack of sick/holiday pay, need to manage finances/taxes (potentially requiring financial advisors), and potential isolation. Building community through collaborating with other disabled people helps prevent understimulation and provides Support networks.

Post-Work Decompression

After work or school, establish routines addressing individual needs: change into comfortable/Sensory-friendly clothes, take solo time, manage medications/treatments (salt, water, tube feeds, dressing changes), watch comforting content or listen to music/white/brown noise, ice or heat painful areas, have easy food available. Needs vary day-to-day depending on meeting density, Sensory input accumulated, or project intensity. This is trial-and-error, especially when new to roles.

Relationships and Social Connection

Making and Sustaining Friendships

Finding friends involves: attending clubs/societies around shared interests (easier at university where groups actively recruit), connecting online through Facebook groups, Discord servers, TikTok, Twitter hashtags (#ActuallyAutistic, NeurodiverseSquad, AutisticPride, ChronicallyIll), and recognizing online friendships as genuine connections equally valuable to in-person friendships. Crucial practices include: not expecting everyone to understand, knowing quality matters more than quantity, doing activities you genuinely enjoy rather than forcing participation, and taking time in friendships. Post-Diagnosis friendships often differ from pre-Diagnosis ones as unmasking changes relationship dynamics.

Supporting chronically ill Autistic friends means: asking about venue accessibility before group plans, inviting even when expecting refusal, checking if Accommodations are possible, learning how to respond to symptoms (passing out, Sensory overwhelm), having safe foods available, understanding that plan changes are necessary, and recognizing the friend isn’t inconvenient for having access needs. These practices become natural over time as friends learn patterns and accommodate intuitively.

Family Relationships and Dynamics

Family members may experience grief about changed relationships, worry about genetic/hereditary factors, or guilt about missed early signs. This emotional processing is their responsibility, not yours. Denial, sadness, or pushiness about doing impossible activities are common responses. Not all family members understand; sometimes providing information from legitimate charities helps, as does discussing conditions without labeling (e.g., “lights should be dimmer” rather than “my Autism needs lower light”). Siblings sometimes become care partners or feel they receive less attention during flare-ups; talking with them, spending quality time, and ensuring they know they’re equally loved helps.

Explaining disability to younger family members works through metaphors (e.g., “wobbly bones” explained flexibility issues) and practicalities about body/brain differences. Kids are often malleable and accepting but curious. For Autism with internal traits like Sensory overwhelm, frame around needs and what children can do to help rather than how Autism works generally.

Family member Support strategies should: not push participation in activities for appearance; not show anger about inability to do chores; ask about small changes enabling comfort; help ensure hydration and nutrition (Autism/chronic illness traits reduce eating/drinking urges); allow plan flexibility without anger; create space for disabled family members’ self-care instead of demanding contribution to family routines.

Romantic Relationships and Dating

Chronically ill Autistic people deserve fulfilling, reciprocated, loving relationships. Challenges include: Support needs limiting dating/relationship time, difficulty finding understanding partners, trust issues. Connecting with other Neurodivergent people often works well—mutual understanding of infodumps, quirks, and Sensory needs. Partners with their own disabilities (ADHD, OCD, Crohn’s disease) bring practical understanding and Support for navigating medical and emotional demands.

LGBTQ+ Autistic people are more likely to be LGBTQ+ than allistic peers. Many don’t explore sexuality/gender while managing conditions. Relevant resources include: Queerly Autistic by Erin Ekins, Queer Body Power by Essie Dennis, and Unmasking Autism by Dr. Devon Price. LGBTQ+ spaces (loud bars, parades) can be inaccessible; alternatives include social media communities, closed Facebook/messaging groups, and community initiatives like queer cafes. Disabled LGBTQ+ people may face desexualization or dismissal of their sexuality; you know yourself better than others—experimentation with labels and dating is valid.

When dating early stages, consider whether to mention disabilities in dating app profiles (weeds out prejudiced people but may invite hate), whether meeting locations are accessible (don’t force yourself into inaccessible venues for appearance), and whether in-person or text discussions of conditions feel safer. Not everyone knows about Autism or specific chronic illnesses—having planned explanations helps.

Partners can help by: asking about communication needs (texting, written word, text-to-speech), asking about accessibility needs (quiet spaces, no stairs, allergen awareness), not being offended by cancellations (health comes first), learning about conditions independently rather than requiring the disabled person to educate, understanding that disabled people need these relationships as part of life, not replacing other needs/supports.

Chronically ill Autistic people often have reduced physical energy for sex, Sensory overwhelm from touch/sounds making intimacy difficult, and low libido. Many can’t engage beyond skin-to-skin contact or light kissing. Sensory hypersensitivity affects sexual preferences and boundaries (e.g., wiping mouth after kissing, disliking lingering saliva). Long-term partners—especially Neurodivergent partners understanding Sensory needs—provide crucial Support. Relationships require careful planning (knowing destinations, duration, expectations), frequent cancellations for health, and understanding that media’s portrayal of constant sex/spontaneous dates doesn’t reflect disabled experiences.

Partners demonstrate love through: filling water bottles, carrying emergency snacks, asking before touching (pain/Sensory concerns), helping move to quieter environments, checking medication timing, helping find places to sit. Discussing boundaries prevents Anxiety or awkwardness about what’s wanted/unwanted. Some couples have formal carer roles—this doesn’t make the disabled person a burden or valueless partner.

Independence and Interdependence

“Independence” in the dictionary sense (not relying on anything or anyone) doesn’t apply to disabled people. Needing carers, disability aids, welfare/benefits, or help with daily tasks isn’t failure. Choose supporters strategically—some may not want partners doing certain tasks due to fear of losing Support after separation, or may want family members doing tasks to eventually move out. Access external carers/disability Support if available; consider Support needs and who/what can help.

Systemic Barriers and Ableism

Types and Manifestations of Ableism

Casual ableism from average people includes statements like “you don’t look Autistic,” “you’re faking,” “you just want special treatment,” or “try yoga and vitamins.” Lateral ableism comes from other disabled people: “if I can do it, so can you,” “you’re not disabled enough,” or “that’s not a real disability.”

Medical ableism includes dismissing long-term disabilities, denying diagnoses or testing, saying “it’s all in your head,” treating mobility aids as “giving up,” denying pain medication for addiction fears, blaming disabled people’s problems on weight, claiming they’re “coping” so need no Support, focusing on cures, and telling disabled people not to have children.

Systemic ableism denies benefits for “looking well,” refuses school/university Support, creates buildings without ramps/lifts, and has police find disabled people “suspicious.”

Common ableist stereotypes about Autistic and chronically ill people include: Autism needs curing or Masking, chronically ill people aren’t trying hard enough/are lazy/faking, “everyone’s a little Autistic” (affecting Accommodations access), doctors’ opinions valued over lived experience, judgment against AAC or alternative communication, medication use scrutinized, and intersections with race compounding ableism (Southeast Asian speaker described limited knowledge, heavy ableism, uniformity pressure, minimal media representation—ableism appears as Western/Caucasian experience).

Medical Gaslighting and Misogyny

Medical gaslighting (psychological treatment causing reality/memory questioning) appears when disabilities/symptoms are disbelieved, patients sent doctor-to-doctor with no solutions, symptoms dismissed as overreacting, physical symptoms attributed to Autism/Anxiety/Depression, or symptoms attributed only to weight. Keeping symptom logs, recording appointments (where legal), bringing advocates, debriefing with trusted people afterward help. Gaslighting particularly affects women, non-binary people, and people of color, and is abusive/neglectful even if unintentional.

Internalised Ableism

Disabled people internalize ableist beliefs from ableist society: refusing treatment believing they should “just get better,” struggling to identify as disabled due to Stigma, avoiding aids/Accommodations to avoid seeming “weak” or “failing,” believing you should do what others with your condition do, and having ableist thoughts about other disabled people’s choices. Unlearning requires: following disabled people on social media, consuming positive media representations, using more supports/Accommodations, questioning ableist thoughts, helping friends/family process these ideas. This is ongoing work—recognizing it deserves self-compassion.

Medical Misogyny in Diagnosis

Society sees Autism as a “white boy condition”—media images and Autism Speaks branding (blue, boys only) reinforced this. Red flags in boys were seen as “shy, quirky girl” traits in girls. No “female Autism” exists—same Autism presents subtly differently, leading to missed diagnoses in those assigned female at birth. Those assigned female at birth may mask more due to gender socialization (Eye contact, quietness, avoiding attention, academic/household focus).

Diagnostic criteria focus on boy manifestations: lining up dolls seen differently than trains (same pattern-recognition trait), special interests illustrated as trains/math rather than gymnastics/books/pink. Misogyny-affected people are diagnosed behind boys; statistics historically said 16:1 ratio but fall quickly to 4:1 or 2:1, likely reflecting Diagnosis gaps rather than prevalence differences.

Extreme Male Brain theory (Simon Baron-Cohen) contributed to this—claiming Autistic people have “extreme male brains” regardless of sex, ignoring hyper-empathy in some Autistic people. Research heavily features cis men (3-6 males per female), perpetuating Diagnostic cycles. High misdiagnosis rates of personality disorders in Autistic people assigned female at birth occur due to Autism-trauma combinations and misogynist stereotypes. Many were told they have Anxiety/Depression, are “hysterical,” or it’s “all in their heads.”

Chronic Illness and Medical Misogyny

Women experience deep medical misogyny: taking years or decades for Diagnosis, told symptoms are growing pains or hormonal, dismissed as not trying or not self-caring. Women are underrepresented in clinical trials; five times more erectile dysfunction studies exist than premenstrual syndrome studies despite 90% of women vs. 19% of men experiencing the latter. Women report more severe, longer-duration, frequent pain and higher pain-disability risk. Psychological treatments are prescribed more often to female patients, who wait longer for pain medications or don’t receive them.

Endometriosis averages 8-year UK Diagnosis despite affecting 10%+ of people with uteruses; sufferers are told symptoms are “totally normal.” POTS disproportionately affects those assigned female at birth (85% of patients), ages 13-50; teenage girls and young women face ageism and dismissal as “not drinking enough” or anxious before testing. Autoimmune diseases show 2:1 gender bias; lupus shows 9:1. African-American women are 3 times more likely to get lupus than white women. Lupus Diagnosis averages 3.5 years with 60%+ misdiagnosed first.

“Yentl syndrome” (Healy) describes women’s treatment and underdiagnosis—women must appear male-like to receive Support equality. Medical gaslighting is more common in misogyny-affected people, worse for Black and Asian individuals experiencing dual discrimination.

Combined Challenges

Being gaslit by doctors claiming Autistic people can’t know physical experiences compounds harm. Professional links between Neurodivergent brain, physical symptoms, and gender create deeply harmful combinations of ableism and sexism. Autistic special interests/deep focus often directed at chronic symptoms impacting every moment—being judged for knowing “too much” combines ableism toward autistics (knowing trait) and sexism (female hysteria assumption). Professionals relying on nonverbal pain cues disadvantage Autistic women; women are perceived as in less pain than men reporting same levels. Autistic interoception struggles mean difficulty describing symptoms—appearing to “stall or make it up.” Sensory needs around tests/touching (often without warning) make doctors more likely to dismiss as exaggeration.

Endometriosis and PCOS are increasingly researched as co-occurring with Autism in people with uteruses; PMDD and heavier/painful periods disproportionately affect Autistic people. Yet these conditions are routinely dismissed as “normal period symptoms”—Autistic people with interoception difficulties less likely receiving Support. POTS, EDS co-occur with Autism and disproportionately affect those assigned female at birth (common Diagnostic cluster), yet sufferers are told they’re “Diagnosis shopping,” making things up, or experiencing symptoms only from original Diagnosis.

Trans and Non-Binary Experiences

Autistic individuals are 3-6 times more likely to be non-binary, transgender, or gender non-conforming than allistic peers, likely because gender is a social construct and Autism affects social understanding. Trans and non-binary Autistic people experience compounded marginalization through transmisogyny in healthcare, misgendering during medical appointments, and gender dysphoria worsened by menstrual conditions or being repeatedly called “female” in clinical settings.

These individuals have rights: they can change names and gender on medical records without a Gender Recognition Certificate, and professionals must keep gender identity confidential. However, many trans and non-binary people avoid disclosing gender identity to healthcare providers due to safety concerns and fear of discrimination affecting their access to needed care. Some contributors described being denied gender clinic referrals due to Autism or chronic illness being viewed as barriers to transition—gatekeeping without clinical basis.

Trans men with EDS reported improvements in joint stability after starting testosterone (due to increased collagen strength), but also faced cisnormative EDS communities predominantly discussed as affecting women. Non-binary individuals navigated unique challenges like early menopause without understanding how Autism affects menopausal experience, experiencing intense dysphoria from hormonal Depression. One contributor noted that Masking Autism often involves Masking gender—for example, pitching up a naturally deep voice in professional settings—and that realizing neurodivergence and gender identity often occur simultaneously for many Autistic people. Unmasking one often enables discovery of the other.

Disability Pride and Unmasking

Unmasking Autism and Finding Self-love

Autistic Masking (social Camouflaging to appear Neurotypical) is deeply layered and extremely difficult to unlearn. It can take years or a lifetime; complete unmasking may be impossible or unsafe for marginalized people. Practical approaches to unmasking and self-love include: wearing Sensory-friendly, brightly patterned or comfortable clothing (like dungarees, soft fleeces, bralettes) instead of conforming to expectations; using disability aids without hiding them (even decorating them with fairy lights); wearing makeup in personally expressive ways rather than society-mandated ways; Stimming openly in public when safe; taking photos with disability aids to normalize them; and using communication methods that come naturally (typing, apps like “Big,” alternative communication) rather than forcing speech or Eye contact.

As a chronically ill person, unmasking Autism has profound effects: when highly masked, Autistic people often expect 150% of themselves physically, mentally, and emotionally, ignoring their own needs. Learning to unmask allows softer self-treatment and openness about physical needs (needing accessible bathrooms, bringing own food, skipping overnight visits). Joining communities of disabled people or those with specific conditions provides belonging and solidarity. Importantly, disability need not be framed as positive or negative; feelings about different conditions can vary, and some days bring wishes for something different—this is valid. The process takes time, and people should never pressure themselves toward overnight confidence.

Disability Pride and Community

Disability pride stems from recognizing oneself as part of a diverse community and standing against societal ableism that frames disability as deficit rather than diversity. Contributors described pride in: the friendships and community found through disability; educational and advocacy opportunities; emotional growth and empathy from discrimination; openness and mindfulness developed through chronic illness; hyperfocus and learning abilities tied to Autism; creative problem-solving developed through adapting to limitations; and the historical disability rights movement. The Capitol Crawl (1990, Americans with Disabilities Act protests) and UK Disability Discrimination Act activism (1995), along with ongoing groups like Disabled People Against Cuts (DPAC), provide historical grounding for disability pride.

Disability pride doesn’t negate struggle or pain; disabled people can simultaneously be proud of their identity and wish for relief from suffering. One contributor noted she’d like to “climb out of [her] own body for a few hours” to escape pain and Sensory overwhelm, yet remains proud of her disability. This apparent contradiction reflects authentic disabled experience: pride in identity coexists with difficult days. Allowing complexity in feelings—holding grief and pride, pain and community, suffering and joy simultaneously—enables genuine self-love and resilience.

Key Principles and Takeaways

  1. Autistic communication differences are valid and deserve accommodation: Don’t be ashamed of needing advocates, using AAC devices, writing things down, or requesting alternative communication methods. Professionals must communicate with the patient, not just their advocate, and adjust their approach to meet Neurodivergent needs rather than expecting Autistic people to fit medical expectations. Healthcare systems that don’t accommodate these differences are failing their patients.

  2. Interoception differences fundamentally change how Autistic people experience and report medical symptoms: Pain scales, verbal descriptions, and standard medical Assessment tools don’t work for many Autistic people. Healthcare systems must develop alternative Assessment methods or work collaboratively to find what works, rather than dismissing patients as unreliable reporters. Your way of describing symptoms is valid and clinically useful.

  3. Everyday tasks compound disability through multiple layers: Cooking, cleaning, laundry, dressing, hygiene, and money management aren’t simple for chronically ill Autistic people due to Sensory issues, executive dysfunction, physical limitations, and memory problems. Society’s ableist expectations create shame, but practical adaptations (assistive tools, routines, lowered standards, alternative methods) make tasks manageable without judgment. The solution is systemic accessibility, not individual effort.

  4. Shame and Stigma are barriers to health and wellbeing: Autistic and chronically ill people face judgment around toileting, hygiene, needing help, not performing tasks “correctly,” and prioritizing health over arbitrary standards. Accepting non-standard solutions (paper plates, unwashed hair, unmade beds, asking for help) is necessary for survival and isn’t moral failure. Society’s standards weren’t designed for disabled bodies.

  5. Sleep is foundational to managing everything else: For many Autistic and chronically ill people, sleep quality directly impacts pain, fatigue, Anxiety, and Sensory regulation—creating cycles where poor sleep worsens symptoms, which further disrupts sleep. Sleep Support (whether medication, environmental changes, or unconventional timing) should be prioritized as a health intervention, not a luxury. Your sleep needs may look different from Neurotypical sleep, and that’s valid.

  6. Pacing prevents harmful boom-bust cycles and prioritizes sustainability: Traditional “make the most of good days” thinking leads to crashes; instead, consistent moderate activity prevents flare-ups and is the only sustainable approach. Pacing isn’t about doing everything but accepting current limits and gradually increasing when bodies adapt. This is a radical act of self-preservation in a productivity-obsessed culture.

  7. You aren’t failing by using Accommodations, shortcuts, or aids: Using mobility aids, working in bed, eating ready meals, dry shampoo instead of showering, or other adaptations isn’t laziness or failure—these are tools enabling life quality. Masking as “normal” while disabled causes Burnout and symptom exacerbation. Your worth isn’t determined by productivity or appearing non-disabled.

  8. Stimming and special interests are essential regulation tools deserving schedule space: Not frivolous hobbies, Stimming provides Sensory regulation and special interests provide calmness and order during overwhelm. Building these into daily routines (not as afterthoughts) supports mental health and acceptance of your condition. Your interests matter even (or especially) when chronically ill.

  9. Medical misogyny and Diagnostic dismissal disproportionately affect Autistic women and AFAB individuals: Healthcare providers rely on stereotypical presentations and verbal descriptions, dismissing atypical interoception and Autism-related communication differences as fabrication. This creates a cycle where co-occurring chronic conditions (POTS, EDS, endometriosis, PMDD) go undiagnosed because each Diagnosis is fought for individually rather than recognized as a common cluster. Systemic change is needed beyond individual advocacy.

  10. Education and employment are systemic barriers requiring Accommodations: Schools and workplaces are inherently inaccessible for many reasons, but Accommodations exist and are legally required. Not accessing these spaces doesn’t mean failure—the system failed you, not vice versa. Prioritize your health over conforming to Neurotypical expectations. Alternative paths (part-time study, freelancing, online work) are valid options deserving equal respect.

  11. Relationships are valid and possible—quality over quantity matters: You deserve reciprocal love without being a burden. Choosing people who make effort to understand your needs; boundary-setting with those who don’t is healthy self-protection. Neurodivergent partners often provide mutual understanding and Support. Online friendships are equally genuine and valuable as in-person connections.

  12. Disability pride and community connection are foundational to self-love and sustainable living: Autistic Masking combined with pain/fatigue management creates unsustainable self-expectations; unmasking (even partially) allows gentler self-treatment, openness about needs, and integration into disability communities providing belonging and normalized accommodation. You can simultaneously be proud of your disability and wish for relief from suffering—both are valid.

Resources and Further Reading

External Resources: