Autism Discourses: Social, Cultural, and Political Perspectives
Overview
This critical academic work challenges purely medical conceptualizations of autism by examining how the condition is socially constructed through language, institutional practices, and power dynamics. Rather than treating autism as a fixed biological fact, the authors analyze how meanings are produced and contested across clinical, family, educational, and policy contexts. The book is essential for anyone seeking to understand autism beyond deficit frameworks—particularly valuable for newly diagnosed Autistic individuals and families navigating conflicting narratives about what autism “is” and what it “means.”
Language, Identity, and the Politics of Representation
The deliberate choice to use “Autistic person” instead of “person with autism” carries profound political and psychological implications. Person-first language, while well-intentioned, reinforces medicalization by suggesting autism is an undesirable add-on to one’s fundamental identity—similar to how we might say “person with cancer” rather than “cancerous person.” Identity-first language centers autism as integral to personhood, mirroring how we celebrate other identity characteristics (“creative person,” “athletic person”). Research shows this linguistic choice correlates with improved wellbeing and positive identity development among Autistic individuals.
This isn’t merely semantic. Language choices shape clinical practice, research priorities, educational policy, and crucially, how Autistic people internalize their own autistic culture. When professionals and families consistently use deficit-oriented language—describing autism as “suffering from” rather than “being”—Autistic children internalize messages that their neurotype is tragic and wrong. Conversely, identity-affirming language enables Autistic individuals to build positive self-concepts while still accessing needed support.
Autism as Social Construction vs. Lived Experience
The authors navigate a crucial distinction: autism is socially constructed in meaning while remaining “real” in embodied experience. This is not a contradiction. The biological and neurological aspects of autism are undeniably real—differences in sensory processing, executive function, and social communication are measurable and lived. However, how these differences are labeled, interpreted, valued, and responded to is socially constructed through discourse and institutional practice.
The same behaviors—stimming (repetitive movements), repetitive vocalizations, preference for routine—are constructed as pathological symptoms requiring reduction in one context, yet could be understood as neutral difference in another. A child who rocks back-and-forth in a clinical assessment is “displaying concerning stereotypic behavior”; in a home environment where rocking is permitted, it’s self-regulation. The behavior is identical; the construction of meaning differs based on context, observer values, and institutional frameworks.
This matters profoundly because it reveals where intervention efforts should focus: not on changing the Autistic person to match neurotypical norms, but on changing social structures, attitudes, and institutional practices to accommodate neurodiversity. When schools prevent Autistic children from using communication devices deemed “distractions,” they’ve converted an impairment (difficulty with verbal communication) into institutional disability (exclusion from participation)—a problem of institutional design, not individual pathology.
Diagnostic Systems as Historical Artifacts, Not Objective Truth
Autism diagnosis has fundamentally changed across time, revealing that classification systems reflect historically contingent social definitions rather than objective discoveries. The DSM evolution illustrates this dramatically:
- DSM I (1952) and DSM II (1968): No autism diagnosis existed; behavioral differences were categorized under psychosis or psychoanalytic frameworks
- DSM III (1980): Autism suddenly appeared as a distinct category for the first time, introducing rigorous criteria and “medicalizing” a previously uncategorized phenomenon
- DSM IV (1994): Added Asperger’s Syndrome as a separate diagnosis, creating a hierarchical “high-functioning” versus “low-functioning” distinction
- DSM-5 (2013): Collapsed the foundational “triad of impairments” (social interaction, communication, repetitive behaviors) into a “dyad of impairments” (social-communication merged, repetitive behaviors retained); removed Asperger’s syndrome as distinct; raised age-of-onset thresholds
Each change wasn’t a scientific breakthrough revealing previously hidden truth—it reflected shifting professional consensus, political pressures, and economic incentives. Some individuals diagnosed today would not have qualified in 1980; some diagnosed in 1994 wouldn’t meet DSM-5 criteria. There is no objective biological marker for autism. Diagnosis relies entirely on clinician judgment assessing behavioral characteristics against criteria that have changed multiple times and continue to shift.
The Performative Nature of Diagnosis and Expertise
Autism diagnosis emerges through a complex negotiation among parents, professionals, and the Autistic child themselves. Parents strategically perform their child’s identity differently depending on audience and institutional context—emphasizing normality (typical activities, feelings, social connections) with neighbors or schools to counter deficit assumptions, while performing abnormality (emphasizing difficulties and support needs) with service providers to justify access to resources and support. These contradictory performances are not dishonest but reflect navigation of a society structurally designed to privilege neurotypical functioning.
Critically, who holds “epistemic authority”—the right to speak authoritatively about autism—varies by context. Parents hold personal knowledge; professionals hold diagnostic authority; Autistic individuals hold experiential knowledge; yet these knowledges are weighted unequally. A pediatrician can diagnose autism based on limited observation (sometimes a single evaluation), while an Autistic adult’s self-assessment is questioned. Professionals referenced a visible “Autistic look”—sensory behaviors and communication differences that signal autism to trained observers—revealing that autism becomes “real” through being perceived and interpreted as such, not discovered as pre-existing truth.
Multiple Disability Models: Limitations and Integration
The field operates with competing disability frameworks, each illuminating different aspects while obscuring others:
- Medical Model: Views disability as individual biological deficit requiring cure; positions solutions within medical professionals’ domain; enables access to healthcare and therapeutic services but reinforces stigma and dehumanization
- Social Model: Frames disability as socially constructed oppression imposed by hostile environments; emphasizes accessibility and inclusion; but sometimes minimizes real biological experiences of difficulty
- Neurodiversity/Identity Model: Celebrates autism as natural variation deserving accommodations; supports positive identity; but can minimize genuine suffering or support needs
- Predicament Model: Recognizes autism simultaneously as disability and positive difference without requiring comparison to neurotypical standards; honors interdependence; particularly relevant to autism’s variable presentation
- Human Rights Model: Positions disability through justice and dignity frameworks; emphasizes rights, participation, and voice; but often remains abstract without operational implementation
The authors’ approach integrates insights from social constructionist, human rights, and predicament perspectives while recognizing that all models are partial. The false binary positioning autism as either “debilitating disorder to cure” OR “neurodiversity to celebrate” paralyzes policy and fails Autistic people. Some Autistic individuals do need substantial support and care; others thrive with minimal accommodation; many experience both simultaneously.
How Disability Labels Function Strategically
Disability labels—including autism diagnosis—function as complex tools serving multiple simultaneous purposes. Parents use autism labels to reframe their child’s non-normative behaviors (meltdowns, hand-flapping, avoidance) as explainable and justifiable rather than simply “misbehaving” or resulting from poor parenting. A meltdown becomes understandable when labeled as Autistic dysregulation; without the label, the same behavior invokes parental blame. Labels enable distance from culpability while accounting for differences society views as problematic.
Yet labels simultaneously enable access to services (therapy, educational accommodation, disability support) while constraining identity through stigmatizing associations. Parents navigate a painful paradox: they need their child diagnosed as “disabled” to access services, but reject the diagnosis’s deficit implications. One mother needed her son diagnosed as “mentally retarded” to qualify for Medicaid coverage enabling continuous therapy access, yet emphasized what her son “can do” and rejected the label’s validity.
Systemic Inequalities Compounding Autism’s Impact
Neoliberal political structures fundamentally shape disability experience by constructing illness and disability as individual problems reflecting personal failure and lack of responsibility. Disabled people are positioned as responsible for their conditions and expected to achieve economic independence and “productivity,” despite the contradiction that disability often reduces economic participation. This ideology devalues social support, prioritizes narrowly-defined independence, and marginalizes those unable to meet consumer-citizen ideals.
The financial burden is staggering. Societal costs exceed those of heart disease, stroke, and cancer combined (US: 613–6,200 (14% of family income).
Simultaneously, mental health services globally receive catastrophic underinvestment—less than 2 US dollars per person in wealthy countries, less than 0.25 in low-income countries. Despite mental health conditions costing economies trillions, only 28% of people with mental health conditions receive treatment compared to 92% with diabetes. This “parity of esteem” crisis—where mental health receives drastically fewer resources than physical health despite comparable disease burden—directly impacts Autistic people.
Educational Exclusion and Employment Barriers
Despite inclusion legislation (US IDEA, UK Special Educational Needs Act, Canada), Autistic children remain systematically excluded from mainstream education at higher rates than other disability groups. Approximately 15.4% are suspended annually, often for behaviors potentially rooted in anxiety or sensory processing rather than willful misconduct. One striking example: a 17-year-old Autistic youth had 186 school exclusions in one year for “running off” and “messing about”—behaviors that might reflect fear, sensory overload, or anxiety rather than disciplinary problems.
Schools report lacking training and resources; teachers often view Autistic children as burdens; nearly 40% of parents express dissatisfaction with educational provision despite 61% satisfaction with emotional support. When adequate accommodations aren’t provided, many parents withdraw children entirely, pursuing home education—converting a general education setting into educational loss.
Employment outcomes are devastating despite Autistic individuals’ documented strengths: only 34.7% attend college; 55.1% are employed within 6 years of secondary school completion; for working-age adults, less than half with disabilities are employed (29%) compared to 64% without disabilities. Barriers cluster into three categories: social problems (communication and interaction difficulties), formality problems (organizational and practical barriers to job entry), and job demand problems (difficulty meeting specific position requirements).
Stigma: Multiple Manifestations and Cascading Effects
Stigma operates through multiple channels: anticipated stigma (fear of unfair treatment), experienced stigma (actual unfair treatment), internalized stigma (self-directed negative views), and treatment stigma (stigma associated with help-seeking itself). Autistic individuals experience higher rates of overt victimization, relational aggression, and clinically significant suicidal ideation compared to neurotypical peers. Autistic women and girls experience greater co-occurring depression and anxiety with dramatically elevated suicide rates—a crisis directly linked to stigma, masking pressures, and social isolation.
Crucially, stigma operates at multiple levels simultaneously. Media representations frequently invoke “medical intervention” and “cure” metaphors, positioning autism outside culture as a biological given requiring correction. Professionals may communicate that autism is tragic through language choices, assessment focus on deficits rather than strengths, and recommendations for normalization rather than accommodation. Parents experience secondary stigma through genetic contribution and neurodevelopmental responsibility—despite scientific rejection of psychoanalytic cause theories, mothers continue reporting that professionals attributed autism to “insufficient love” or poor parenting.
The Persistent Problem of Mother-Blaming
Mother-blaming persists across historical and contemporary paradigms, shifting form while maintaining parental culpability. Leo Kanner’s original observations of “cold and formal” parenting created the foundation; Bruno Bettelheim’s thoroughly-discredited “refrigerator mother” theory (claiming maternal coldness caused autism) became cultural touchstone despite scientific rejection decades ago. Yet mothers continue reporting that professionals attribute autism to insufficient love or poor parenting.
Under neoliberal frameworks, mothers are expected to engage in “child-saving heroics”—pursuing intensive interventions (behavioral therapy, speech therapy, occupational therapy, often multiple simultaneous interventions) to “recover” or “cure” their child. When intervention doesn’t produce neurotypicality, mothers are blamed for insufficient effort, inconsistent implementation, or genetic contribution. This creates an impossible bind: mothers are held accountable for preventing or reducing autism through environmental management, yet blamed when autism persists despite intensive effort.
Communication Preferences and Digital Technology Access
Autistic individuals demonstrate strong communication modality preferences: text-based methods (email, messaging) and face-to-face communication are preferred; telephone communication is notably least favored. Organizations relying on telephone-only systems create systematic barriers for Autistic service users. The Internet has emerged as a significant support mechanism offering asynchronous communication (reducing processing pressure), text-based options reducing non-verbal communication decoding demands, and access to geographically distant peers and neurodiversity discourse.
Computer-mediated communication provides two critical benefits: increased comprehension and control over communication direction, allowing users to manage interactions at their own pace without real-time pressure to respond immediately to non-verbal cues; and improved social support through contact with similar others. Qualitative research with Autistic adults found that Internet use reduced stress and provided visual anonymity enabling more comfortable interaction.
Yet digital technology access compounds existing inequality rather than reducing it. The most economically disadvantaged Autistic individuals—those most likely to benefit from text-based communication—often lack reliable Internet access and personal devices. As teletherapy expanded, particularly during COVID-19 pandemic, lack of technology access created additional marginalization.
Insurance Markets Determining Service Access
Autism treatment and service provision in the US are shaped more by insurance mandates and Medicaid requirements than by clinical need. Therapists function simultaneously as clinicians and insurance documentation specialists, navigating conflicting institutional demands. Insurance companies often require discipline-specific diagnostic labels (like “expressive language delay”) rather than accepting primary autism diagnoses for coverage, incentivizing accumulation of supplementary diagnoses.
Medicaid qualification functions as disability gatekeeping despite stated support intent. Children must be deemed “disabled” under state standards (often requiring diagnosis of “intellectual disability” or “significant functional limitations”) by state-approved clinicians, then receive approval from state boards for developmental disability waivers. This process is experienced as unpredictable—described as “like the luck of the draw”—with even human services caseworkers lacking clear understanding of requirements.
Covid-19’s Disproportionate Impact on Neurodivergent Communities
The pandemic created extraordinary challenges for Autistic individuals due to: inflexibility and need for routine/sameness disrupted by lockdowns; difficulty with public health measures (masks triggering sensory distress, distancing requirements, vaccination comprehension challenges); co-occurring conditions (anxiety, epilepsy, immune alterations) complicating coping; disrupted therapies and services; increased parental stress and economic uncertainty. Autistic people faced elevated COVID-19 risk due to pro-inflammatory states, co-occurring health conditions, and barriers in healthcare settings (sensory overload from PPE, staff lack of autism knowledge, restricted visitor access).
Systemic inequalities were magnified: reduced service access, closed intervention programs, lost therapy hours, disrupted educational continuity. However, some families experienced lockdown positively when able to accommodate needs creatively—reducing sensory overwhelm from school environments, permitting stimming without social judgment, creating flexible schedules honoring different circadian rhythms. The pandemic highlighted three core inequality domains: abuse and exclusion from healthcare; mental health deterioration (increased anxiety, depression, suicidality); and economic hardship and employment loss, with disabled workers suffering disproportionate job losses.