Looking After Your Autistic Self

1. Embrace Your Autistic Self: Strategies for Adult Challenges

In many ways, being autistic affects me more now than it did when I was a child.

Adult autism challenges. Being an autistic adult presents unique difficulties beyond typical adult responsibilities, encompassing social interaction, organization, communication, and sensory overwhelm. There's a misconception that autistic children become "less autistic" adults, but often, the demands of adulthood intensify autistic traits, requiring conscious effort to adapt and thrive. The author's personal journey highlights how masking, while seemingly helpful, can increase stress and lead to a feeling of failure until an autism diagnosis provides clarity and a new path for self-support.

Knowledge is power. Understanding one's autistic identity is the first step towards developing effective strategies. The author, initially unaware of her autism, found that a diagnosis provided a framework to understand past struggles—from social difficulties to sensory aversions and anxiety. This realization shifted her approach from masking to actively supporting her autistic self, emphasizing that knowledge empowers individuals to navigate adulthood with a different, more effective approach.

Proactive problem-solving. The author's "questioner" personality, always seeking details and facts, became a strength in developing supportive strategies. By asking others how they manage daily tasks and being confident enough to seek help, she built a repertoire of solutions. This proactive stance, coupled with a passion for autism, underpins the book's aim: to share learned strategies so other autistic adults can not just survive, but truly thrive.

2. Master Your Triggers with the "Detective Habit"

Learning what triggers you to feel overwhelmed is vital to learn how to look after yourself.

Understanding stress responses. Autistic individuals often react differently to stress, releasing higher and longer-lasting levels of cortisol, perceiving danger in everyday situations, and experiencing heightened stress compared to non-autistic adults. This can manifest as fight, flight, or freeze responses, leading to anxiety, overwhelm, shutdowns, or meltdowns. Recognizing these triggers is crucial not only for psychological well-being but also for mitigating the damaging physical effects of chronic stress on the body.

Executive function impact. Stress significantly impairs executive function skills like planning, organizing, initiating, flexible thinking, time management, task completion, evaluation, and emotional regulation. The author's anecdote of freezing at a roadblock due to stress illustrates how multiple triggers can rapidly deteriorate these skills, leading to emotional dysregulation and an inability to problem-solve. Identifying these triggers allows for proactive strategies to maintain function.

The "Detective Habit." This five-step method helps identify triggers and build strength-based coping strategies:

• Identify: What happened, what did I feel, what in the environment triggered me, were basic needs met, when did discomfort start?
• Strengths: What did I manage well, and how can I use this in the future?
• Support: What would have helped, and what coping strategies can I use next time?
• Ration: Spread out triggering events to allow for recovery.
• Recover: Plan dedicated time to rest and decompress after exposure to triggers.
  This non-judgmental reflection helps autistic adults understand their reactions and develop personalized support plans.

3. Cultivate Quick Calm Plans and Embrace Stimming for Regulation

When I am overwhelmed and have either shut down... or am about to shut down, I cannot think flexibly, and therefore it’s very important to have a Quick Calm Plan made before I become overwhelmed.

Proactive calming strategies. A Quick Calm Plan is a pre-prepared set of strategies and tools to use when feeling overwhelmed, preventing or managing shutdowns and meltdowns. Since flexible thinking diminishes under stress, creating this plan before overwhelm hits is critical. The author notes that autistic adults often learn to postpone public shutdowns, making these plans essential for managing the internal experience until a safe space is found.

Recognizing the need. Clues that a Quick Calm Plan is needed include physical signs like body shaking, headaches, jaw clenching, nausea, racing thoughts, feeling ungrounded, or a strong desire for solitude. Emotional indicators like heightened anxiety, hopelessness, or feeling on the verge of crying also signal the need for urgent self-care. Recognizing these early signs allows for timely intervention, preventing escalation.

Stimming as self-soothing. Stimming (self-stimulatory behavior) is a repetitive action, often rhythmic, that helps autistic individuals regulate emotions and sensory input. While historically suppressed, it's now recognized as a vital coping mechanism. The author's personal journey with stimming highlights its involuntary nature and the societal pressure to mask, but also its profound ability to release pent-up tension and provide a sense of calm. Healthy stimming should be embraced as part of a Quick Calm Plan, and problematic stims can be redirected with professional help.

4. Build Holistic Well-being with the PERMA Model and Special Interests

Good well-being is not about feeling extreme happiness all of the time. It’s also not about never feeling uncomfortable feelings.

Defining well-being. Well-being isn't constant happiness but rather a state of comfort with oneself, recognizing and meeting needs, and finding meaning in daily life. The author initially felt a lack of meaning despite outward success, realizing that emotional and sensory overwhelm overshadowed positive experiences. The PERMA model, developed by Dr. Martin Seligman, provided a framework to identify and integrate elements that enhance well-being, transforming her daily satisfaction.

The PERMA framework. This model outlines five key elements for well-being:

• Positive Emotion: Engaging in activities that foster joy, gratitude, and contentment.
• Engagement: Achieving a "state of flow" through activities that fully absorb the mind, often leveraging personal strengths.
• Relationships: Fostering meaningful connections with others, which boosts self-esteem and perspective.
• Meaning: Belonging to something larger than oneself, such as a community, profession, or creative endeavor.
• Accomplishments: Setting and achieving realistic goals, acknowledging personal progress rather than seeking external validation.
  For autistic individuals, some elements like "Relationships" might require more intentional effort, while "Engagement" through special interests often comes naturally.

Special interests as a well-being tool. Autistic special interests, often intense and repetitive, are powerful tools for achieving "Engagement" and can contribute to all PERMA elements. They provide joy, passion, and a mental escape from anxieties. However, caution is needed to prevent over-reliance, where a special interest becomes a problem by overshadowing other responsibilities or relationships. The author's experience with Jane Austen novels illustrates how an intense interest can signal underlying stress or mental health struggles, necessitating a broader, multi-strategy approach to self-care.

5. Anchor Your Body: Prioritize Vestibular and Proprioceptive Senses

Regulating the vestibular and proprioceptive senses is like dropping an anchor to ground yourself.

The Anchor Senses. Beyond the "Famous Five," the vestibular (balance and head position) and proprioceptive (body awareness in space) senses are crucial for grounding. When these "Anchor Senses" are dysregulated, it's like being on a "choppy boat" – other senses become harder to manage, leading to increased sensory stress. Prioritizing their regulation creates a stable foundation, allowing for better processing of external sensory information and overall calm.

Vestibular challenges and solutions. A dysregulated vestibular system can cause clumsiness, poor coordination, difficulty with sports, gravitational insecurity (fear of unstable ground), and spatial orientation issues. The author's struggles with escalators and crossing streams highlight how these challenges can be frightening and debilitating. Soothing strategies include:

• Oral input: Chewing, crunching, or sucking through a straw to activate the inner ear.
• Movement: Balance exercises, swimming, putting the head lower than the heart (e.g., downward dog), gentle head tilts, controlled spinning, rocking chairs, and hammocks.
  Combining these with proprioceptive input can enhance tolerance.

Proprioceptive challenges and solutions. Poor proprioception can lead to feeling disconnected from one's body, lack of coordination, difficulty with movement planning, misjudging force, poor posture, and spatial awareness issues. Hypermobility, common in autistic individuals, can further impact proprioception due to loose joints. Soothing strategies focus on deep pressure and body awareness:

• Resistance: Weight lifting, pushing hands into a chair, leaning into walls, tight spaces (e.g., cozy armchairs).
• Weighted items: Weighted blankets, backpacks, ankle/wrist straps, or compression clothing.
• Movement: Swimming or walking in water, rolling over a gym ball.
• Environmental design: Reducing clutter to improve navigation.
  These strategies help the body feel connected and secure, reducing overall sensory and emotional overwhelm.

6. Tune into Your Inner World: The Essential Role of Interoception

If your basic needs are not met, then you are more likely to hit: 1. Sensory overwhelm. 2. Emotional overwhelm. 3. Cognitive overwhelm.

The Basic Need Sense. Interoception is the sense that gathers information about internal bodily states, including hunger, thirst, emotions, pain, body temperature, energy levels, and the need to use the toilet. It is fundamental for meeting basic needs, and when dysregulated, it significantly increases vulnerability to sensory, emotional, and cognitive overwhelm. The author's experience of not recognizing early hunger signs, leading to shakiness and nausea, exemplifies how poor interoception can disrupt daily function.

Interoception difficulties. Challenges with interoception can manifest in various ways:

• Eating/Drinking: Not recognizing hunger, thirst, or fullness, leading to under- or over-eating/drinking.
• Temperature: Not feeling cold or hot, resulting in inappropriate clothing choices and discomfort.
• Elimination: Difficulty recognizing the urge to use the toilet.
• Pain: Different pain perception or expression, sometimes leading to under-reporting or extreme reactions.
• Emotions: Alexithymia (difficulty identifying/naming emotions) and confusion between physical sensations and emotional states (e.g., stomach discomfort as anxiety vs. physical issue).
• Tiredness: Not recognizing signs of exhaustion, leading to delayed rest.

Self-soothing strategies. Improving interoception is a complex but vital process. Strategies include:

• Professional help: Occupational therapy specializing in interoception.
• Mindfulness: Practices like meditation to enhance body awareness.
• Exercise: Paying attention to physical sensations during activity.
• Body check-ins: Regularly asking "What do I feel?" or "Does my body need anything?" (e.g., setting phone alarms).
• Routine: Establishing consistent schedules for eating, drinking, and sleeping to meet basic needs regardless of internal cues.
• Specific aids: Preparing snacks, wearing layers, and understanding personal physical reactions to stress.

7. Navigate the External World: Strategies for the Famous Five Senses

How we respond to the sensory world around us can have a significant impact on everything in our lives, from what might seem like small-scale decisions, to major life decisions.

Impact on daily life. The "Famous Five Senses" (smell, sound, taste, sight, touch) profoundly influence how autistic individuals interact with society and the world. Sensory differences can dictate choices in food, clothing, social activities, and even career paths. Overwhelm from these senses can lead to social withdrawal or rejection, despite a desire for connection. However, these differences also bring unique strengths, such as heightened pattern recognition or advanced auditory discrimination, which can be valuable in various professions.

Smell (Olfactory) Sense:

• Challenges: Overwhelming multiple scents, physical reactions (nausea, gagging), difficulty with strong-smelling environments (canteens, public toilets), food aversions, and intimacy issues.
• Strategies: Seeking preferred smells (soap, essential oils), planning for triggering environments (open windows, sitting away from kitchens), using unscented products, gradual desensitization (if self-chosen), and open communication with partners about preferences.

Sound (Auditory) Sense:

• Challenges: Over-sensitivity to noise (pubs, shopping centers, household appliances), inability to filter background noise, sensitivity to specific voices or accents, and difficulty enjoying experiences due to sound quality.
• Strategies: "Loud noise" warnings, blocking noise (earbuds, headphones), drowning out bad sounds with good ones (music, audiobooks), seeking silence, managing sound levels (e.g., no TV while cooking), and meeting people outdoors.

Taste (Gustatory) Sense:

• Challenges: Food aversions leading to limited diets and nutritional deficiencies, fear of new foods, difficulty with food cooked by others, aversion to toothpaste, and over-eating specific tastes.
• Strategies: Identifying preferred tastes (salty, spicy for alertness; creamy for calm), checking menus in advance, warm drinks, easy-to-prepare comfort foods, experimenting with food texture and temperature, nutritional supplements, and professional help if needed.

Sight (Visual) Sense:

• Challenges: Overwhelm from too many patterns or clutter, preoccupation with visual details, difficulty with bright, moving, or flashing lights, and stress from unexpected visual changes.
• Strategies: Dimness or darkness (eye masks, blackout blinds), calm lighting (lamps, candles), looking at calming images or special interests, blocking bright light (sunglasses, desk screens), creating a visually calm space at home, and sparkling objects for visual seeking.

Touch (Tactile) Sense:

• Challenges: Discomfort from certain fabrics, seams, tags, wet clothes, specific textures (slime, raw meat), creams, medical treatments, dental visits, and aversion to being touched by others (especially unexpected touch).
• Strategies: Trying on clothes, identifying pleasing textures (smooth stones, silky scarves), preparing for disliked sensations (e.g., talcum powder for sand), communicating touch preferences, altering clothes (cutting tags, inside-out seams), using barriers (gloves, blankets), arriving early to choose seating, warmth (hot water bottle), water (showers, baths), and increasing proprioceptive/vestibular input to enhance touch tolerance.

8. Manage Overwhelm: Understanding and Responding to Shutdowns and Meltdowns

If we can’t take back control once we’ve hit our sensory limit, we may experience shutdown, or have a meltdown.

Sensory overload is physical. Sensory overload occurs when the nervous system is overwhelmed by sensory input, leading to a loss of control. It's a physical state, not "all in your head," and can spread to cognitive and executive functions, impairing communication, social skills, and planning. Ignoring sensory overload exacerbates anxiety, shakiness, and emotional distress, ultimately leading to shutdowns or meltdowns.

Meltdowns vs. Shutdowns.

• Meltdown: An intense, often uncontrollable response to overwhelm (sensory, emotional, cognitive). Manifests as intense crying, shouting, screaming, running away, hiding, physical changes (shaking, repetitive movements), or lashing out verbally or physically. Guilt and shame are common afterward.
• Shutdown: A "freeze" response where the individual withdraws, feeling detached and losing the ability to communicate or function. It's like "hiding in a shell," often postponed until a safe environment is reached, but this postponement intensifies the experience.
  The author describes her own meltdowns as uncontrollable crying, dread, nausea, or hysterical laughter, often triggered by prolonged suppression of overwhelm.

The "Bitter and Sweet" of meltdowns. While meltdowns can be physically uncomfortable (headaches, jaw pain) and lead to feelings of shame or guilt, they also serve as a release of pent-up emotion or sensory stress. Accepting meltdowns as a natural release, rather than a personal failing, can transform them into a cathartic experience. The author emphasizes that understanding autism helps shift from self-chastisement to self-compassion and proactive self-care.

Five steps to deal with sensory overload:

1. Sensory Soothing Strategies: Use tools from a portable sensory toolkit (earplugs, eye mask, fidgets, soft scarf, favorite song).
2. Basic Needs Met: Address hunger, thirst, pain, and exhaustion, as these lower sensory tolerance.
3. Remove Stressor: Eliminate the source of sensory overload if possible.
4. Remove Self: Leave the overwhelming environment if necessary.
5. Sensory Soothing Plan: Implement a pre-planned strategy for recovery, ranging from a short rest to a full day of recuperation, including comfortable clothes, weighted blankets, warm drinks, and engaging special interests.

9. Recognize and Regulate Your Emotions, Especially with Alexithymia

If you can’t recognise and name your emotions, it will be very hard to learn to regulate your emotions.

The challenge of emotional recognition. Before regulating emotions, one must first recognize and name them, a skill many autistic individuals find challenging. The author, despite her interest in others' emotions, realized her own struggle with identifying her feelings beyond "bad" or "I don't know." This difficulty, known as alexithymia, affects approximately 50% of autistic people and significantly hinders emotional regulation.

Alexithymia's impact. Alexithymia can manifest as:

• Difficulty recognizing or naming emotions.
• Only realizing an emotion when it reaches an extreme level ("0 to 90" without noticing the build-up).
• Misinterpreting physical sensations as purely physical rather than emotional clues (e.g., stomach discomfort as a bug vs. anxiety).
• Difficulty reading others' emotions.
  This can lead to a disconnect between internal feelings and external expressions, causing confusion for both the individual and those around them.

Four-step strategy for uncomfortable emotions:

1. Name the Emotion: Acknowledge the feeling (e.g., "I feel sad"). This "Name It to Tame It" approach helps gain control and prevent emotional domino effects. Start with comfortable emotions, then move to slightly uncomfortable ones to build skill.
2. Scan the Body: Identify physical changes (e.g., light-headedness, clenched jaw) to pinpoint the emotion's type and intensity, and determine which body parts need soothing with sensory strategies.
3. Identify the Cause (Optional): Sometimes knowing the trigger is crucial for immediate action (e.g., leaving a dangerous situation). Other times, it's better to calm down first and reflect later, especially if the cause is sensory.
4. What Can You Do About It?: Decide whether to address the cause, use sensory soothing strategies for physical reactions, or choose to sit with the emotion while supporting oneself (e.g., watching a sad movie with a weighted blanket).

10. Seek Tailored Support: Therapy and Mental Health in Autism

There is a significant difference between mental health and mental illness.

Mental health vs. mental illness. Mental health refers to overall emotional, psychological, and social well-being, which fluctuates. Mental illness is a diagnosable condition affecting mood, thinking, and behavior. Autistic individuals face a significantly higher prevalence of mental illnesses, with studies showing high rates of anxiety (20-29%), depression (9-26%), bipolar (3-11%), and OCD (7-10%). Factors like sensory processing differences, social challenges, masking, sleep difficulties, and unemployment contribute to this vulnerability.

Autistic burnout. This distinct condition involves chronic exhaustion, loss of skills, and reduced stimulus tolerance, often triggered when expectations outweigh abilities and support is lacking. Masking, or suppressing autistic traits, is a major contributor. The author's "week by the seaside" analogy highlights the need for reduced demands, increased sensory self-care, and engagement in special interests as crucial recovery strategies, distinct from typical depression treatments.

Common mental illnesses in autism:

• Depression: Persistent sadness, loss of motivation/pleasure, guilt, poor self-worth, sleep/concentration issues, physical complaints, and suicidal thoughts.
• Anxiety Disorders: Excessive, long-lasting anxiety, including Generalized Anxiety Disorder (GAD), Panic Disorder (sudden intense fear with physical symptoms), Phobias (excessive fear of specific things/situations), Agoraphobia (fear of inescapable situations), Social Anxiety Disorder (fear of social judgment), PTSD (trauma response), and OCD (obsessive thoughts leading to compulsive behaviors, distinct from autistic repetitive behaviors which are self-soothing).
• Eating Disorders: Severe disturbances in food relationship (Anorexia, Bulimia, Binge-Eating, Avoidant Restrictive Food Intake Disorder - ARFID, often linked to sensory aversions).
• Suicidality: Significantly higher rates in autistic adults, especially women. Warning signs include thoughts of ending life, preparing means, preoccupation with death, reckless behavior, hopelessness, and self-destructive actions. Immediate professional help is crucial.

Seeking professional help. If experiencing mental illness or struggling with mental health, the first step is to consult a GP or psychiatrist. Therapies like psychotherapy (including CBT, EMDR), clinical psychology, and counseling can help. Alternatives include mindfulness, occupational therapy (for sensory/interoception), animal therapy, art therapy, drama therapy, and music therapy. Therapists should adapt their approach for autistic clients by:

• Setting clear rules and expectations.
• Using simple, literal language and visual aids.
• Allowing breaks and incorporating special interests.
• Considering sensory environment (lighting, scents).
• Respecting communication preferences (verbal, written, online).
• Allowing time for processing and questioning.
• Providing written summaries of strategies.
• Offering sensory tools like weighted blankets.