But You Don't Look Autistic At All

Executive Summary

“But You Don’t Look Autistic at All” by Bianca Toeps dismantles stereotypes about what autism looks like while illuminating the invisible struggles of autistic people, particularly those who appear “high-functioning” to neurotypical observers. The book weaves together personal narrative, scientific theory, and practical insights to challenge the dominant deficit-based understanding of autism.

The central thesis is revolutionary yet simple: what appears as social dysfunction is actually sensory overload, and what looks like high-functioning is often exhausting masking that leads to autistic burnout. Toeps introduces readers to the double empathy problem and Intense World Theory—frameworks that radically reframe autism from a collection of deficits to a different way of experiencing an overwhelming world.

What makes this book distinctive is its unflinching examination of the psychological toll of appearing “normal.” The author doesn’t just describe autism; she documents the devastating consequences of decades spent camouflaging autistic traits, including depression, burnout, and suicidal ideation. Most importantly, she offers a path forward that rejects “fixing” autistic people in favor of accepting neurodivergence with its limitations and strengths.

Overview and Core Concepts

Understanding Autism: Beyond DSM-5 Diagnostic Criteria

The DSM-5 defines Autism Spectrum Disorder around three core areas: persistent deficits in social communication and social interaction, restricted repetitive patterns of behavior including stimming, and symptoms present since early development causing impairment. However, Toeps immediately exposes a fundamental disconnect—while diagnostic frameworks emphasize social communication problems, autistic people themselves consistently report sensory overstimulation as their primary daily struggle.

This gap reflects how diagnostic criteria were developed through a neurotypical lens rather than by listening to autistic people about their actual experiences. The author also reveals troubling history behind diagnostic categories: Hans Asperger, who developed “Asperger’s Syndrome,” worked in Nazi Vienna and contributed to the systematic persecution of people with disabilities. His assessment methods were deeply gendered, diagnosing boys with “autistic psychopathy” while labeling girls with similar traits as having severe developmental issues.

The Double Empathy Problem vs. Theory of Mind

The dominant Theory of Mind model suggests autistic people lack the ability to recognize that others think differently, based on the famous Sally-Anne test. This framing positions autism as a deficit in understanding others—a one-way failure of empathy.

Damian Milton’s Double Empathy Problem offers a radically different explanation: the empathy gap works both directions. Autistic people and neurotypical people struggle to understand each other, but because neurotypicals are in the majority, they determine what counts as “normal” communication, placing the burden entirely on autistic people to adapt.

Toeps demonstrates this through personal examples: her emotional response to social stimuli was overwhelming not because she lacks empathy, but because she processes social and emotional information intensely. Crucially, autistic-to-autistic communication typically has far fewer problems, and autistic people form deep friendships without masking. The problem isn’t autistic people lacking empathy—it’s that neurotypical and autistic communication styles are fundamentally incompatible unless neurotypicals also adapt.

Intense World Theory: Hyperactivity, Not Deficit

Neuroscientists Henry and Kamila Markram propose that autistic brains are hyperactive with stronger connections between neurons and more emphatic responses to stimuli. Rather than social deficits being primary, this theory suggests overwhelming sensory and emotional intensity causes autistic people to withdraw or shut down as a protective coping mechanism.

The amygdala and emotional processing areas show local hyper-functionality, making social fragments “overly intense, compulsively attended to, excessively processed and remembered with frightening clarity.” This completely reframes apparent social withdrawal: autistic people aren’t avoiding others because they can’t understand social cues, but because the intensity of social and sensory information is unbearable. It’s a protective mechanism, not a deficit.

The Gender Gap in Autism Diagnosis

Autism is diagnosed in men four times as often as women, not because women are inherently better at camouflaging, but because they face harsher social consequences for appearing different. Women are socialized to be “sweet and soft-spoken,” making autistic directness and bluntness more socially acceptable in men. Women experience greater pressure to conform to gender expectations, leading to more intensive masking from childhood.

The consequences of this underdiagnosis are severe. Many women aren’t diagnosed until adulthood, sometimes only after a crisis like relationship breakdown or burnout. Toeps received her diagnosis (Asperger Syndrome) in adulthood after seeking evaluation following a relationship breakdown; the diagnostic process involved questionnaires, tests, and conversations with people close to her, ultimately taking several months.

Research shows that 21.6% of autistic people assigned female at birth identify as non-binary or transgender (compared to 4% nationally), and autistic people have significantly higher rates of non-binary and transgender identities and bisexuality. This is explained by “flattened priors”—the tendency of autistic people to rely less on past social experiences and societal expectations and more on direct observation of reality.

Sensory Sensitivity: The Core Experience

Concrete Examples of Sensory Overload

Autistic sensory experience is amplified across all senses. Toeps describes excessive sunlight causing headaches requiring caps and sunglasses, halogen lighting creating multiple shadows that make focus impossible, wind and air conditioning being unbearable, tight clothing around the stomach creating sensory overload, certain fabrics preventing temperature regulation, humming ventilation systems causing distress, and loud noises triggering disproportionate anger and aggression.

She provides a haunting example: she punched someone at a theme park over continuous whistling. This wasn’t premeditated antisocial behavior but a reactive response to sensory overload. She emphasizes that this reaction—which appears violent and inexplicable to neurotypicals—makes sense when you understand that the sensory input wasn’t just irritating; it was like experiencing the sound magnified by ten.

Proprioception and Muscle Tension

Proprioception issues compound sensory challenges, causing high muscle tension throughout the body with shoulders raised, shallow breathing, and squinted eyes, leading to frequent headaches. Yoga helped Toeps by making her conscious of when muscles tense, allowing her to calm breathing and restore balance.

Physical Manifestations of Sensory Overload

Sensory overload manifests physically: Toeps experiences severe stomach cramps and digestive issues triggered by overstimulation. The relationship between gut health and Autism remains unclear—whether intestinal problems cause autism, result from chronic stress, or stem from heightened sensory sensitivity to internal stimuli.

Importantly, the author argues that these physical limitations—headaches, cramps, muscle tension—are actually blessings in disguise because they force her to honor her boundaries before reaching crisis point.

Social Communication and Constant Monitoring

Toeps describes an exhausting internal alarm constantly asking “IS EVERYTHING ALRIGHT?!” while navigating social situations, monitoring whether friends are still enjoying her company. She struggled with eye contact as a child due to heightened activity in emotional circuits when viewing faces and eyes—making direct gaze physically intense and uncomfortable. Brain scans confirm autistic people show elevated emotional responses to eyes and faces.

Compensatory Strategies and Masking

She developed compensatory strategies like associating people with specific features to remember them, though she often has no idea what acquaintances actually look like. Despite these strategies, she performed a “cheerful business woman” persona rather than admitting autism affects her, finding it easier to appear successful than acknowledge struggles.

However, eye contact training—while improving her ability to make eye contact—didn’t reduce the underlying discomfort; it only increased her daily energy expenditure doing something that remains uncomfortable. This reveals a critical issue with social skills training: it often creates the appearance of normalcy while increasing the person’s internal struggle rather than addressing the actual underlying challenge.

Executive Dysfunction: The Underrecognized Struggle

The Cleaning Catastrophe Example

Executive function difficulties aren’t explicitly listed in DSM-5 but are essential to many autistic people’s experience. Autistic brains struggle with dividing large tasks into subtasks, separating important from minor details, breaking established patterns, and task initiation.

Toeps’ household was a disaster with piling laundry, dirty dishes, and clutter—not because she didn’t care or understand the problem, but because the thought of “just cleaning up” made her head explode. The process triggered a cascade: “This has to go in the closet! But the closet needs an extra shelf! Should I get one at Ikea first? Oh, there’s a dentist bill! Better pay that first!” Meanwhile, sensory stimuli everywhere created overwhelm, making the entire project impossible despite her intelligence and awareness of the problem.

The KonMari Method for Executive Dysfunction

She discovered Marie Kondo’s KonMari method was transformative—not because of the philosophy, but because it converted a fuzzy, abstract concept (“tidying up”) into concrete, manageable steps (“putting things back where they belong”). This reveals a key accommodation principle: executive dysfunction improves dramatically with structure, clear systems, and removing decision-making burden.

Practical accommodations for executive function include washing dishes under running water rather than in a basin, setting alarms and reminders, creating step-by-step plans written down, having others take charge to give the brain a break, and removing decision-making burden at moments of low capacity.

Repetitive Thoughts and Mental Loops

Toeps experiences thought spirals where the same sentences repeat in her head (“I have to get out of the loop. I loop.”), particularly after busy workdays with lots of communication. Her brain races like Formula 1 cars lap after lap, creating inability to sleep despite exhaustion.

Loop-breaking techniques include sitting in silent Starbucks, changing environment, working in familiar spaces, creating quieter planning and flexible scheduling, and maintaining stable relationships and reliable emotional stability.

Masking, Camouflaging, and Autistic Burnout

The Psychological Consequences of Masking

Autistic individuals, particularly women, learn to mask autistic traits through social pressure and fear of consequences. Toeps spent 25 years suppressing her natural behaviors—holding back opinions, monitoring herself constantly, and adjusting to others’ expectations. This masking creates a “defense mechanism” where autistic people develop detailed observations of how neurotypical people behave and attempt to replicate it, but at enormous psychological cost.

The constant internal monitoring and self-criticism leaves many “non-autistic-looking autistics” experiencing depression, burnout, and suicidality at significantly elevated rates. Research shows children exposed to ABA—therapy that uses punishments and rewards to “normalize” autistic children and prevent stimming—have higher rates of PTSD than peers.

Understanding Autistic Burnout

Autistic burnout occurs when social demands exceed limited capacities and energy spent “acting normal” runs out. Someone previously able to speak coherently might suddenly burst into tears at a single word or can’t produce sentences—not becoming “more autistic” but finally unable to hide existing autism.

“High-functioning” autism is subjective; a person appearing fine is often fighting to keep their head above water. Toeps identified at least five periods in her life with autistic burnout—periods she initially interpreted as personal weakness rather than the predictable result of unsustainable masking.

Self-Acceptance Vs. “Fixing”

After her diagnosis, she realized she didn’t need to “fix” herself or become “easier-going”—she needed to accept her autism with its limitations and strengths. When she stopped medication that dulled her personality and accepted her autism, she found liberation despite losing the ability to “fit in.”

Practical Strategies & Techniques

Creating Predictability Through Flexibility

Rather than rigid “plans” with must-do items, create “options”—flexible lists of activities that could be done. This allows for better mental health when unexpected changes occur and prevents the triggering of executive dysfunction when plans must change.

Environmental Modifications for Sensory Regulation

Modify environments to reduce sensory overload: use caps and sunglasses for excessive sunlight, avoid halogen lighting in favor of softer alternatives, control air quality with fans on low settings, choose soft fabrics around sensitive areas, and use white noise or noise-cancelling earbuds to manage unwanted sounds. These aren’t luxuries; they’re accessibility needs equivalent to ramps for wheelchair users.

Supporting Executive Function Through Systems

Break large tasks into smaller steps with explicit systems. Set alarms and reminders. When the autistic person is stuck in decision-making loops, take charge of the activity to give their brain a break.

Communication Accommodations

Text-based communication is better than phone calls. Ask one question at a time during conversation. Autistic people often hate small talk and prefer detailed discussion of special interests. Use email or text for important discussions. Avoid over-specific timing expectations.

Honoring Stimming and Sensory Self-Regulation

When autistic people stim (repetitive soothing movement), don’t intervene unless the behavior is self-harmful. Stimming is self-regulation, not distraction or “bad behavior.” Support autistic person’s special interests and obsessions—these are happiness moments that provide crucial sensory and psychological regulation.

Deep-Pressure Touch and Physical Regulation

Use deep-pressure touch (firm, sustained pressure rather than light touch) to help regulate sensory and emotional states. This can be incorporated into relationships through activities like weighted blankets or deliberate hugging techniques.

Key Takeaways

1. Autism is invisible but profoundly impactful: Success and apparent functioning don’t negate autism diagnosis or struggles. Many undiagnosed autistics previously attributed their experiences to personal weakness rather than recognizing their autistic neurology.

2. Sensory sensitivity is the core experience, not social deficits: The Intense World Theory better explains why social withdrawal happens—not from inability to process social cues but from overwhelming intensity of social and sensory fragments.

3. Masking has severe psychological consequences and leads to burnout: Years of “acting normal” doesn’t cure autism—it depletes energy reserves and creates psychological breakdown.

4. Executive dysfunction is debilitating despite intelligence: High IQ doesn’t protect from executive function problems. Concrete systems provide crucial support that neurotypical willpower cannot replace.

5. The double empathy problem means neurotypicals must also adapt: Communication difficulties work both directions—autistic people struggle with neurotypical social conventions, but neurotypicals struggle to understand autistic communication styles.

6. Boundaries are not limitations to overcome—they’re survival tools: Physical manifestations of overload—stomach cramps, headaches, muscle tension—are the body’s way of enforcing necessary boundaries.

7. Autism diagnosis is often delayed in women due to societal pressure and diagnostic bias: Women face harsher social consequences for appearing different and are socialized to hide autistic traits more intensively.

Counterintuitive Insights & Nuanced Perspectives

The Double Empathy Problem: Neurotypicals Also Struggle to Understand Autistic Communication

The mainstream narrative suggests autistic people lack empathy and struggle to understand others’ perspectives. The counterintuitive reality is that the empathy gap works both directions—neurotypical people also struggle to understand autistic communication and perspective.

Sensory Sensitivity as Primary, Not Secondary

The DSM-5 emphasizes social communication deficits as primary Autism features. Autistic people themselves report sensory overstimulation as the biggest daily impact. The Intense World Theory explains this: autistic brains have hyperactive sensory and emotional processing, making ordinary stimuli overwhelming.

Executive Dysfunction Isn’t Laziness or Lack of Intelligence

High IQ doesn’t protect autistic people from executive dysfunction. Task initiation doesn’t work like willpower; it’s a neurological bottleneck that requires concrete systems and accommodations rather than effort alone.

Invisible Doesn’t Mean Non-Existent; Suppressing Signs Costs Energy

Autism isn’t truly invisible—trained observers notice signs through posture, eye contact patterns, stimming, and muscle tension. However, autistic people suppress these visible signs through years of social pressure and behavioral conditioning, appearing “normal” at enormous psychological cost.

Masking Doesn’t Enable Better Functioning—It Depletes Energy

A counterintuitive finding: social skills training and behavioral conditioning don’t make autistic people function better over time; they increase exhaustion and vulnerability to burnout while creating the appearance of competence.

Late Diagnosis in Women Reflects Socialization Bias, Not Biological Difference

Women are diagnosed with Autism at one-quarter the rate of men, not because they’re biologically less autistic but because they face harsher social consequences for appearing different and are socialized to hide autistic traits more intensively.

Boundaries Aren’t Limitations to Overcome; They’re Protective Signals

Physical manifestations of overload—stomach cramps, headaches, muscle tension—are often framed as something to overcome or manage through exposure therapy. These physical signals are the body’s way of enforcing necessary boundaries and preventing autistic burnout.

Critical Warnings & Important Notes

ABA Causes Harm

ABA is widely used and often recommended as standard treatment for Autism. However, research shows that children exposed to ABA have higher rates of PTSD than peers. ABA uses conditioning techniques to suppress autistic behaviors (particularly stimming) and force compliance with neurotypical norms. The autism community, particularly autistic adults, actively advocates against ABA. Autistic people report that ABA training created internalized shame, difficulty with healthy boundaries, and long-term trauma.

Early Diagnosis Can Have Double-Edged Consequences

While early diagnosis provides validation and access to support, it can also create harmful self-limiting beliefs. Well-meaning professionals tell autistic children they “can’t” do things—that certain jobs are unsuitable, that they’ll struggle with relationships, that they need to be “fixed.”

Masking to Appear “Normal” Creates Psychological Harm, Not Resilience

The dominant narrative suggests that autistic people should learn to “cope” with neurotypical environments through masking and accommodation. However, sustained masking leads to depression, burnout, suicidality, and eating disorders.

Mental Health Crises Are Often Undiagnosed Burnout

Autistic people experience depression, anxiety, suicidality, and mental health crises at elevated rates. These are frequently unrecognized burnout—not mental illness independent of autism but psychological breakdown from unsustainable masking.

Diagnostic Frameworks Reflect Neurotypical Perspective, Not Objective Reality

The DSM-5 emphasizes social communication deficits as primary because researchers observed autistic people struggling with neurotypical social norms and concluded the problem was autistic people. However, autistic people consistently report sensory overwhelm as their biggest struggle.

Unmasking Is Vulnerable and Should Be Gradual

Autistic people who have spent decades masking often fear what happens if they stop performing normalcy. Toeps initially feared that revealing her Autism would cause clients to discriminate against her or use her autism against her.

This Book Doesn’t Cover All Autism Experiences

“But You Don’t Look Autistic at All” focuses primarily on the experience of white, highly educated, professional autistic women and their late-life diagnosis and social masking. It doesn’t deeply address non-speaking or minimally-speaking autism, autism with co-occurring intellectual disability, autism in non-white communities, autism in different cultural contexts, or neurodiversity in low-income populations.