The ActuallyAutistic Guide to Advocacy: Core Principles and Strategies
Understanding Autism as Identity, Not Tragedy
Autism represents a natural neurological variation affecting approximately 1 in 59 children, characterized by different ways of perceiving, processing, and interacting with the world. Rather than viewing autism as a disease to cure or tragedy to grieve, advocates should recognize autism as an integral aspect of identity that permeates every experience.
The harmful “Autism Warrior Parent” ideology that pursues cures or views autism as an enemy to overcome causes documented damage to autistic individuals. Jim Sinclair’s crucial distinction helps parents understand their grief: they often mourn the loss of an imagined “normal” child rather than their actual child’s autism. Addressing this distinction becomes essential for authentic parent-child relationships to develop.
Dangerous “remedies” marketed as autism treatments cause severe harm. Non-FDA-approved treatments cause vomiting, severe diarrhea, and dangerous dehydration. Psychiatric medications like Risperdal prescribed to eliminate autism cause tardive dyskinesia, arrhythmia, weight gain, and cognitive impairment. These interventions represent genuine safety concerns requiring parental caution and autistic community consultation.
Instead, effective advocacy accepts autism’s strengths while addressing genuine support needs. Autistic strengths include pattern recognition, intense focus, creativity, memory abilities, attention to detail, and unique perspectives valuable across many fields. Rather than portraying autism exclusively as positive (“superpower”) or negative (tragedy), advocates should acknowledge realistic strengths and support needs—recognizing that many autism-related “weaknesses” exist primarily because the world isn’t designed for neurodivergent people.
Environmental Barriers, Not “bad” Behaviors
The foundational principle: “Badly designed environments cause barriers, and barriers cause behaviours.” Rather than eliminating stimming or other autistic behaviors, advocates should understand what these behaviors communicate and modify the environment accordingly.
Understanding Stimming As Self-Regulation
Stimming serves as an anxiety-management and self-regulation tool. Different stims serve different purposes: hand-flapping often communicates emotions, spinning provides sensory input and coping mechanisms, while other stims help manage intense sensory or emotional experiences.
Removing stimming without addressing underlying causes proves unethical and ineffective. The goal should be creating environments where autistic people can stim safely and freely while addressing root causes of distress—not training away what may be the only available coping mechanism.
The Spoon Theory Framework
The spoon theory provides a useful framework: disabled people start each day with a fixed number of “spoons” (energy units), with each activity consuming spoons. Autistic people use additional spoons navigating an ableist world designed for neurotypical processing styles.
Advocates should focus on reducing environmental barriers rather than expecting autistic people to do all the adaptive work. This means addressing sensory overload rather than medicating it away, allowing communication flexibility, designing spaces for neurodivergent needs, and recognizing that many autism-related challenges stem from environmental mismatches, not individual deficits.
Presuming Competence Across All Presentation Styles
Presuming competence means “to assume an autistic person has the capacity to think, learn, and understand—even if you don’t see tangible evidence.” This principle proves especially critical for minimally verbal or non-speaking autistic people, who are often presumed intellectually disabled when they are not.
Autism represents a neurological difference in communication and processing, not an intellectual disability—though these can co-occur as separate conditions. Assessment tools typically use neuro-normalized methods biased toward neurotypical communication styles.
Critical research finding: 43-52% of minimally verbal children had significantly higher nonverbal than verbal intelligence scores, yet their verbal test performance made them appear intellectually disabled. This assessment bias means a person’s “performance” on standard tests doesn’t reflect actual competence.
Practical Implementation of Presuming Competence
Give adequate wait time for responses without interruption or sentence completion (word-retrieval difficulty is not incapacity). Listen without finishing sentences or dismissing perspectives. Recognize that difficulty speaking doesn’t indicate lack of thought or understanding. View alternative communication methods like AAC devices as legitimate language tools deserving the same respect as speech. Never speak for autistic people rather than amplifying their own voices, which removes their opportunity for self-advocacy and filters their experiences through a neurotypical lens.
Avoiding Harmful Stereotypes
Savantism Myths
Only approximately 10% of autistic people have savant skills, yet media perpetuates the myth that most do. This stereotype objectifies autistic people by suggesting they’re only valuable if exceptionally talented, creating pressure and limiting understanding of the broader autistic population.
Gender Bias in Diagnosis
Girls and women face underdiagnosis because they camouflage better and their intense interests (makeup, celebrities, animals) aren’t recognized as obsessive traits that would be flagged in boys (trains, maps, presidents). Current diagnostic measures were designed to detect autism in males, so professionals often miss autistic girls.
The pressure to appear neurotypical creates severe consequences. Camouflaging produces near-universal exhaustion according to a 2017 British study, with participants describing needing to curl up in fetal position to recover. Girls develop eating disorders at higher rates due to social pressure to fit in.
Neglect of Adult and Elderly Autistic People
The overemphasis on childhood autism neglects critical adult needs. Many autistic adults struggle with employment and housing, mental healthcare access, addiction and substance abuse, with limited resources addressing these challenges.
Late-diagnosed elderly autistic people (many diagnosed in their 60s or 70s after lifelong struggles) have almost no resources available to understand their experiences and identity.
Understanding Meltdowns Vs. Tantrums
Mainstream culture conflates meltdowns with tantrums, leading to blame and shame. This distinction fundamentally changes how advocates respond: a tantrum is a behavioral choice about not getting something desired, while a meltdown is neurological overload manifesting in physical and mental consequences.
Meltdown Presentations
Meltdowns vary dramatically. Some resemble panic attacks with racing heart, stomach pain, rapid breathing. Others are internal involving dissociation and hopelessness. Many involve shutdowns characterized by paralysis and inability to communicate or think.
Using a “sensory bucket” metaphor: everyone has a capacity for sensory input (positive or negative); when the bucket overflows, meltdown territory follows. Understanding this distinction removes blame and opens possibility for compassionate response.
Example: Russell Lehmann’s airport experience shows compassionate meltdown response where an airline employee crouched down, asked what was wrong, spoke to his mother, helped find alternatives, and had the captain greet him before boarding. This gentle, human approach treated the autistic person with dignity rather than judgment.
Building Independent Living Skills
Temple Grandin emphasizes that skill-building must start early: “Kids have got to get jobs before they graduate high school. They’ve got to do volunteer jobs when they’re 12, and chores when they’re eight, and learn how to work.”
Graduated Approach to Independence
The approach focuses on single steps: putting toothpaste on a brush without help before attempting full tooth-brushing, practicing tool use in childhood to enable trade skills later. Exposure to diverse fields is critical—if a child isn’t exposed to programming, mechanics, art, or various fields, they won’t know which interests them.
Grandin’s progression example: learned tool use in second grade, used hand saws by fifth grade, working on her aunt’s ranch at 15 led directly to her cattle industry career.
Skilled Trades and Portfolio Development
Skilled trade classes (mechanics, welding, drafting) provide crucial pathways that Grandin credits with saving the lives of autistic people she worked with. For job interviews, portfolios demonstrating actual work (drawings, code, apps, projects) reduce social demands while showcasing genuine skills and capabilities.
Driving and Social Checklists
Driving represents another crucial independence skill. Grandin learned in safe spaces (parking lots, fields) before progressing to traffic, accumulating 200 miles of practice first before attempting real-world driving.
Checklists for formal events (hygiene, timing, appearance) help manage non-obvious social requirements, especially as autistic people develop understanding of expectations that aren’t explicitly taught in neurotypical spaces.
Person-Centered Advocacy: Rejecting “normal” As the Standard
Autistic people don’t universally want to “be normal.” Many prioritize happiness, which often looks fundamentally different from neurotypical happiness. The book emphasizes that assuming autistic people want to act neurotypically creates stress, encourages harmful masking, and can lead to dangerous coping mechanisms like substance abuse.
David Gray-Hammond attributes his addiction to unmet support needs stemming from years of masking without an autism diagnosis—illustrating that pushing autistic conformity has real mental health consequences.
Core Principles
Avoid upholding neurotypical behaviors as the gold standard for healthy living. Recognize that some aspects of autism—stimming, special interests, sensory experiences, solitude—can provide genuine happiness and meaning. Support each autistic person’s authentic vision of success rather than imposing neurotypical standards.
Naoki Higashida states: “For us, you see, having autism is normal—so we can’t know for sure what your ‘normal’ is even like. But so long as we can learn to love ourselves, I’m not sure how much it matters whether we’re normal or autistic.”
Misaligned Happiness Definitions
Autism consultant Sarah Hendrickx explains: “My idea of happiness is solitude and silence or rewriting my schedule for the next month over and over again. If an advocate thinks that happiness is lots of social interaction and reducing my repetitive behaviours, then we do not have the same goal.”
This misalignment between support efforts and actual autistic desires fundamentally undermines advocacy. Life coach Brian King notes that parents often use themselves as the standard for their child’s path, but this is counterproductive. Instead, advocates should help autistic individuals discover their talents and expose them to diverse models of successful living.
Respecting Autistic Voices and Avoiding Over-sheltering
Autistic people need neurotypical allies to amplify their voices—not speak for them. This distinction is critical: allies act as a “megaphone for autistics” rather than taking center stage themselves.
When neurotypicals speak on behalf of autistic people about their needs, they remove opportunities for autistic individuals to demonstrate they are “sentient and independent thinkers” and filter autistic perspectives “through a neurotypical lens, thus removing from our self-advocacy the rawness and authenticity of our experiences.”
The Danger of Over-Sheltering
Over-sheltering prevents learning and growth, potentially creating learned helplessness. Parents and professionals often shelter with good intentions (protecting from ridicule, ensuring success) but inadvertently stunt growth.
Real advocacy focuses on “discovering the kind of life the person with autism wants to live and helping them live it”—not changing them to fit others’ visions. Autistic individuals benefit from immersion in challenging social contexts, diverse experiences, genuine opportunities to problem-solve and fail, which builds resilience and actual capability.
A teen struggling with anxiety might benefit from supported exposure to a feared social situation rather than avoiding it entirely, building genuine capability over time.
The Problem With Functioning Labels
Functioning labels (“high-functioning,” “low-functioning”) are inaccurate and harmful, creating false hierarchies that dismiss expertise. Comments like “That person doesn’t have real autism. She’s high-functioning” or conversely “That person is low-functioning, how can I trust what they say?” exemplify how these labels prevent appropriate learning and support.
The Non-Linear Nature of Autism
Author Georgia Lyon explains that autism isn’t linear—someone might communicate relatively typically while having extreme sensory processing issues. Liane Holliday Willey states: “My biggest complaint is when advocates dismiss my challenges as not challenging enough, because, apparently, I, like others, can make autism look too easy to navigate.”
These labels “create a dichotomy between autistic people that are likely to be successful and those that are less likely,” missing that many simultaneously possess incredible strengths and face daunting challenges.
Value of Diverse Autistic Perspectives
Autistic expertise from people presenting differently than one’s own child remains broadly useful. Anna Nibbs, who speaks, shares common experiences with nonspeaking autistic people and can advocate for all types. Nonspeaking autistic people have profound insights into the shared autistic experience.
The more diverse autistic experiences one encounters, the more likely one finds insights helping one’s own loved one. Support should match individual needs, not label-based assumptions.
Language Preferences: Person-First Vs. Identity-First
The autism community is divided on language. Some prefer person-first language (“person with autism”) to emphasize humanity separate from disability. Others prefer identity-first language (“autistic person”) because autism is integral to identity, similar to cultural identity.
This isn’t mere semantics—language shapes attitudes and identity development. Autistic individuals should choose their own language preference; this choice should never be forced by others. Neurotypicals should ask and defer to individual preferences rather than correcting autistic people’s self-identification.
Intent Vs. Harm: Accountability Beyond Good Intentions
Good intentions are necessary but insufficient for effective advocacy. When advocates realize they’ve caused harm, defensiveness—hiding behind good intentions—prevents growth.
Ally Grace states directly: “Intent does not negate harm. The way to fix it, after you realise you have been causing harm, is to learn how to not cause harm anymore.”
Alix Generous explains: “It’s always a tragedy to see that the child has to do all the work to change and then the parents feel like they don’t have to, when, in actuality, the child’s success depends on their ability to be a good parent.”
The Power of Accountability
Acknowledging mistakes opens possibility for forgiveness and growth. Tom Iland recalls believing his mother was perfect; when she admitted her mistakes, he learned he could make errors and still be okay. He says: “You’d be amazed how much the words ‘I’m sorry’ and ‘I love you no matter what’ can mean to someone with autism.”
From Understanding to Action
Neurotypical people often teach autistic people while projecting their own worldview through an NT filter. The autistic community explicitly requests that allies become students—listening with humility and actually implementing the specific accommodations and communication preferences autistic people articulate.
Intersectionality: Race and Disability
Ableism and racism are co-dependent and intertwined. To be defined as fully nondisabled requires approximating whiteness; white disabled people’s disabilities detract from their whiteness, while disabled people of color’s disabilities accentuate supposed inferiority due to race.
Compounded Marginalization
Racial minorities carry overt racism plus daily microaggressions depleting spoon count. Eric Evans, a Black autistic man, experiences constant stares triggering anxiety that makes it harder to mask socially, inability to mask his Blackness while facing pressure to mask autism, stereotyping as unintelligent followed by being told he “speaks white” when showing intelligence, and defense mechanisms (dressing nicely, speaking clearly) that paradoxically draw more attention and scrutiny.
Medical Gaslighting and Safety Concerns
Khali Raymond experiences surprise at his intelligence and is called “retarded” after disclosing Asperger’s. Kayla Smith notes autistic POC receive poor representation compared to white peers; society sees them as “either a threat, tragedy, or both.”
Medical gaslighting disproportionately affects Black disabled people. Being Black and autistic compounds police threat; Eric Evans’ mother prohibited toy guns, correlating autism-related concerns with racial profiling danger.
Practical Implementation Strategies
Active Listening and Presuming Competence
Assuming competence requires giving autistic individuals wait time to formulate responses without interruption or sentence completion. Many autistic people experience temporary difficulty retrieving words despite full understanding and capability—impatience worsens this struggle.
Implementation steps: Count to ten silently before assuming someone has finished speaking, use body language that communicates patience and genuine interest, ask clarifying questions rather than making assumptions, resist the urge to fill silences or complete sentences.
Environmental Modification Framework
Rather than changing the autistic person, systematically identify environmental barriers and address them. This includes sensory modifications, communication flexibility, and design choices supporting neurodivergent needs.
Implementation steps: Walk through spaces where the autistic person struggles, ask directly “What makes this hard?”, listen for environmental factors (sensory, timing, social structure), make targeted changes (quiet spaces, timelines, explicit social expectations).
Building Independence Through Graduated Exposure
Start early with age-appropriate tasks, breaking skills into single steps. Focus on real-world application rather than abstract learning.
Age-appropriate progression: Age 8 assign chores and work responsibilities, age 12 volunteer jobs, before high school graduation paid work. Practice single steps thoroughly before adding complexity. Use portfolios and demonstrations of actual work rather than traditional interviews.
Therapy Goals Aligned with Autistic Priorities
Effective therapy should offer freedom of choice and flexible options, allow autistic people to create goals whenever possible, understand behavior as communication addressing underlying anxiety/sensory needs first, and center on respect, empowerment, and validation.
Therapy should be fun and engaging, following the autistic person’s pace and interests. Never train away stimming or harmless self-regulation behaviors.
Seeking and Amplifying Autistic Voices
Rather than making decisions about autistic people based on professional consensus or parental instinct alone, actively seek out and center autistic perspectives.
Implementation steps: Read books and follow social media accounts by autistic authors and advocates, attend talks or panels featuring autistic speakers, research what adult autistic people say about specific approaches before relying only on clinician recommendations, invite autistic people in your life to speak, teach, lead, and share expertise.
Concrete Accountability Practices
Translate abstract understanding into specific behavioral change. Move from passive allyship (retweeting, profile picture changes) to active, accountable advocacy.
Implementation steps: Ask autistic people in your life where you don’t “practice what you preach,” when you recognize mistakes acknowledge them directly and apologize sincerely, continue asking questions and seeking new neurodiversity information rather than treating initial learning as sufficient, support new accommodations and technology improvements for disabled people.
Key Organizations and Resources
Autistic-led Organizations
- Autistic Self Advocacy Network (ASAN) - Premier self-advocacy organization led by autistic people
- Autism Women & Nonbinary Network - Centers experiences of autistic women and nonbinary autistic people
- NeuroClastic - Neurodiversity-affirming publication and organization
- Learn From Autistics - Resources and advocacy centered on autistic voices
Publications and Key Works
- “The Spoon Theory” by Christine Miserandino
- “Loud Hands: Autistic People, Speaking” edited by Julia Bascom
- “Nobody, Nowhere” by Donna Williams
- Jim Sinclair’s work in Autism Network International Newsletter
Online Resources
- ActuallyAutistic hashtag - Identifies autistic voices distinct from general autism discourse
- The Thinking Person’s Guide to Autism - Comprehensive resource curating autistic and disability perspectives
- Ollibean - Disability justice and neurodiversity-focused organization
Critical Considerations for Allies
Safety Concerns With “cure” Treatments
Parents should be extremely cautious about any intervention framed as “curing” autism. Before enrolling a child in any therapy, investigate what adult autistic people say about that therapy’s safety and long-term outcomes.
When to Seek Professional Mental Health Support
While accepting autism itself, autistic people frequently experience co-occurring conditions requiring professional support including anxiety, depression, PTSD, eating disorders and addiction, and suicidal ideation. Professional mental health support is appropriate and potentially life-saving for these conditions, provided therapy aligns with autistic goals and values.
Avoiding Tokenism
Including one autistic person on a panel to “share their story” while others discuss expertise perpetuates tokenism. Genuine inclusion requires autistic people in leadership positions from the start, not added afterward as consultants.
Understanding Inspiration Porn
“Inspiration porn” reduces disabled people to objects of inspiration, objectifying them for routine activities and praising them for commonplace tasks. It hides social justice issues, destroys privacy, and reinforces harmful ableist assumptions.
Final Principles for Effective Advocacy
The most effective advocacy recognizes that autistic people are the experts on their own lives and experiences. By centering autistic voices, presuming competence, and focusing on environmental modification rather than individual conformity, allies can create meaningful change that supports autistic people in thriving authentically.
The key principles are: center autistic expertise in all decisions about autism, presume competence regardless of communication method, modify environments rather than trying to “fix” autistic traits, respect communication diversity and alternative communication methods, honor individual definitions of happiness rather than imposing neurotypical standards, practice accountability by changing behavior based on autistic feedback, address intersectionality and how race, gender, and other identities compound with autism, amplify rather than speak for autistic voices, reject functioning labels that create false hierarchies, and recognize autism as identity rather than tragedy to be cured.