Autism A Social And Medical History 2nd Edition

Historical Foundations and Pre-Modern Understanding

Pre-Modern Interpretations of Neurodivergent Behaviors

Before the development of modern medical frameworks, behaviors now recognized as Autism were interpreted through supernatural, religious, and cultural lenses rather than Medical diagnosis. These historical perspectives reveal how different societies responded to Neurodevelopmental differences and provide context for understanding contemporary Stigma and Misunderstanding of autistic traits.

Ancient and Religious Frameworks: Ancient Egyptians viewed Epilepsy—affecting up to 40% of autistic people—as “the sacred disease” conferring special powers, representing one of the few historical contexts where Neurodivergence was associated with positive attributes. Jewish Biblical tradition classified developmental differences as “unclean” states, barring individuals from Temple service and full social participation. This religious exclusion established patterns of social isolation that would persist in various forms throughout history.

The Changeling Myth: European folklore provided the changeling myth as an explanation for children exhibiting developmental and behavioral differences. The belief that fairies stole human children and left changelings in their place led to horrific outcomes—historical records indicate “children thought to be changelings were routinely killed, exposed or abandoned.” This represents one of the most dangerous examples of how supernatural explanations justified violence against neurodivergent individuals.

Cross-Cultural Variations: Not all cultures responded negatively to neurodivergence. Hindu and Buddhist ascetics were culturally permitted to deviate from social norms, providing acceptable social roles for individuals with different ways of experiencing and interacting with the world. Islamic medicine pioneered mental hospitals, with the first established in Baghdad in 705 AD, offering treatment combining prayer, herbal medicine, diet, and music therapy. These diverse responses demonstrate that societal treatment of neurodivergence has always been culturally constructed rather than biologically determined.

Evolutionary Context and Ancient Origins

Genetic research reveals that autism-associated genetic variants emerged at least 200,000 years ago, suggesting that autistic traits may have provided adaptive advantages in hunter-gatherer societies. These advantages likely included:

Superior pattern recognition abilities valuable for tracking and environmental awareness
Enhanced attention to detail beneficial for tool-making and identifying edible plants
Intense focus enabling deep knowledge development in specific areas
Creative problem-solving approaches that could benefit group survival

This evolutionary perspective challenges contemporary narratives that frame autism purely as deficit or disorder, suggesting instead that autistic traits represent natural human variation that provided both advantages and challenges throughout human history.

Enlightenment Era and Early Educational Approaches

The Brief Window of Educational Optimism

The Enlightenment brought scientific classification frameworks and, briefly, genuine hope for educational approaches to developmental differences. Jean-Marc Gaspard Itard (1775–1838) pioneered these efforts with “Victor,” the Wild Boy of Aveyron, developing methods that bear striking resemblance to contemporary therapeutic approaches:

Sensory integration techniques to help Victor process and respond to environmental stimuli
Operant conditioning using rewards and punishments to shape desired behaviors
Methods leveraging Victor’s apparent strengths in visual memory

Itard’s influential student Édouard Séguin expanded these approaches, developing techniques that foreshadow modern physical therapy, occupational therapy, and special education. Séguin’s work at Bicêtre Hospital demonstrated remarkable educational progress with children who had been deemed unteachable, challenging prevailing theories of permanent deficiency.

The Shift to Institutionalization

This window of educational optimism closed rapidly as institutions expanded in the nineteenth century. The fundamental problem was economic rather than therapeutic: institutions became profitable through inmate labor on farms and in factories rather than through providing education. This created a direct financial incentive to expand definitions of “feeble-mindedness” to capture more workers for institutional labor pools.

By the 1960s, British hospitals for “subnormal children” had eliminated educational programming entirely. Residents experienced:

Dormitory living with communal day rooms that provided no privacy or personal space
Uniform haircuts and clothing that erased individual identity
Restricted personal possessions, creating environments of deprivation
Complete lack of knowledge about food preparation or uncooked ingredients
Frequent staff changes ensuring children “never see the same person put them to bed as the one who wakes them up”

This transformation from potential sites of learning to sites of confinement represents one of history’s most tragic examples of how economic incentives can override humanitarian concerns in institutional care settings.

The Misinterpretation of Evolutionary Theory

Charles Darwin’s evolutionary theory was catastrophically misinterpreted into “Social Darwinism”—the belief that society should actively remove “less able individuals from the population” to improve the gene pool. This pseudoscience intersected with eugenics (term coined by Darwin’s cousin Sir Francis Galton in 1883), promoting both:

“Positive eugenics”: Encouraging “racially pure” and healthy individuals to reproduce
“Negative eugenics”: Preventing disabled people from having children through forced sterilization and marriage prohibitions

Implementation As State Policy

Connecticut became the first US state to pass marriage prohibition laws for “feeble-minded” people and those with seizure disorders in 1896. Eugenic ideology spread globally through colonialism, with sterilization of “feeble-minded” children in South Africa “strongly encouraged” to “preserve supposed white intellectual and physical supremacy.”

Restrictive immigration laws adopted by the US and other nations specifically linked “mental and behavioural differences to ‘race’ or ethnicity,” preventing disabled people from emigrating. This represented early intersection of disability discrimination with racism and xenophobia.

Scientific Failure and Persistent Influence

Despite complete lack of scientific support, eugenics infrastructure persisted for decades. The text notes a crucial finding: “at no time in the history of human eugenics have such practices ever achieved their desired result,” as genetic inheritance is extraordinarily complex and selective breeding for desirable traits increases health problems. Yet eugenics infrastructure influenced institutional policy, research funding, and adoption practices throughout the twentieth century.

Psychology and Psychiatry: Repackaging Superstition As Science

The Substitution of Psychological Authority for Religious Authority

Early twentieth-century psychology and psychiatry reframed ancient moral and religious explanations of disability as scientific discourse, merely substituting “unconscious psychological impulses” for religious “sin” while maintaining the moral meaning of disability.

Psychoanalyst Georg Groddeck exemplified this transformation in 1923, writing: “Illness has a purpose … whoever breaks an arm has either sinned or wished to commit a sin with that arm … whoever grows blind desires no more to see, has sinned with his eyes.” This differed not at all from medieval sin-based explanations but gained credibility through psychological authority.

The Knowledge Gap Between Authority and Evidence

Unlike visible conditions treated by medical doctors with established literature, neurological and developmental differences without visible causes became sites where “the new sciences of psychology and psychiatry” reintroduced moral frameworks. The text emphasizes a critical limitation: behavioral sciences were based on individual clinician intuition and generalization rather than systematic empirical research.

“This process was only as logical as the human beings who carried it out—which is to say, often not very logical at all, given the lack of knowledge that practitioners had about crucial topics like normal child development, how the brain works, or the impact of seizures, illness, trauma or injury on the brain.”

This gap between claims to scientific authority and actual knowledge created space for harmful theories to persist for decades despite lack of evidence.

The Child Guidance Movement and Medicalization of Childhood

Origins in Moral Panic

After 1900, psychology shifted focus to children through the Child Guidance movement (also called the Mental Hygiene movement), driven by moral panics about urban crime and juvenile delinquency. The 1909 founding of the National Committee for Mental Hygiene (NCMH) funded clinician fellowships, encouraged schools to hire psychiatrists, and arranged expert testimony in criminal trials.

The 1924 American Orthopsychiatric Association formalized this field with an explicit prevention goal: reduce adult mental illness, criminality, and “aberrant behaviour” by attacking childhood roots. This represented early medicalization of childhood, establishing patterns of surveillance and intervention that continue to influence contemporary approaches to child development.

The Creation of “abnormal” Childhood Categories

Jean Piaget’s research on “normal” child development in the 1920s created a baseline against which “abnormal” development could be measured and policed. Practitioners developed new diagnostic categories—“the nervous child, the delicate child, the enuretic child, the neuropathic child, the maladjusted child, the difficult child, the neurotic child, the over-sensitive child, the unstable child and the solitary child”—applying nearly all of these to children now perceived as autistic.

August Aichhorn and others attributed “deviant adult behaviour, from homosexuality to criminality” to “adverse childhood events or incorrect child-rearing techniques,” establishing the foundation for parent-blaming that would dominate autism discourse for decades.

Institutional Economics and the Expansion of Confinement

Legislative Foundations of Institutionalization

The modern asylum system expanded dramatically following legislation like Britain’s County Asylums Act (1808, updated 1845) and Lunacy Act (1845). Unlike institutions for deaf or blind children that emphasized education, public asylums increasingly deprioritized education, particularly for children.

Economic Incentives Driving Institutional Expansion

Asylum residents deemed “employable” received better food, clothing, and housing, incentivizing institutional classification and expansion. Many institutions became profitable by renting inmates as household and farm labor or selling products created through inmate labor.

By the mid-twentieth century, approximately 700 per 100,000 American adults (1 in 142) were in mental institutions or prisons; in late-eighteenth-century Paris, 1 in 100 residents was held in the Hôpital Général. The text suggests a disturbing historical coincidence: “It is unlikely to be a coincidence that the rise of the asylum as a supply of industrial, household and farm labour coincided neatly with the demise of legal slavery and widespread indenture in Europe and the Americas,” with Brazil’s post-1888 abolition of slavery followed by development of agricultural “labour colony” asylums for disabled people.

This structural analysis reveals that institutionalization was driven primarily by economic demand for labor rather than therapeutic benefits.

Leo Kanner and the Founding of Autism Diagnosis

Leo Kanner’s 1943 paper “Autistic Disturbances of Affective Contact” established autism as a distinct syndrome by coupling clinical descriptions with theoretical interpretation. His choice to use Bleuler’s term “autism”—originally describing self-absorption in adult schizophrenia patients—created an immediate semantic and conceptual link between autistic children and schizophrenia.

The word “autism” derives from Greek “autos” (self) and the suffix “-ism” (denoting excess or condition), linguistically positioning it as a psychological defense mechanism of deliberate self-withdrawal rather than a neurological difference. This naming decision positioned autism as psychological rather than organic and suggested affected individuals deliberately turned away from the world—profoundly influential despite Kanner himself believing autism resulted from interplay between innate traits and environment.

Hans Asperger and Concurrent European Research

Hans Asperger’s concurrent 1944 work in Vienna describing similar but milder presentations remained largely unknown outside Europe until Lorna Wing’s 1981 reconceptualization introduced “Asperger syndrome” as a distinct diagnosis, though Asperger’s concept was suppressed during WWII and disappeared from scientific discourse until Wing’s rediscovery.

This parallel development demonstrates how scientific “discovery” often depends on social, political, and linguistic factors rather than purely empirical observation.

Institutional Contexts and Diagnostic Confusion

The Problem of “hospitalism”

Kanner and Asperger developed their foundational work within systems merging Child Guidance principles with institutionalized populations in overcrowded facilities. Kanner taught himself pediatric psychiatry at the State Hospital in Yankton, South Dakota, in an overcrowded facility with no educational programs for children. Asperger worked within Vienna’s orthopedagogy (curative education) clinics.

These institutional environments—housing children with epilepsy, post-encephalitic disorders, and intellectual disabilities—provided observational basis for defining autism. However, institutional deprivation created a critical problem: children exhibiting “hospitalism” (severe developmental damage from extreme emotional neglect) displayed similar symptoms to autistic children—withdrawal, self-stimulation, repetitive behaviors—yet had entirely different causes.

Confusion Between Environmental Trauma and Neurodevelopmental Difference

This confusion—conflating environmental trauma with neurodevelopmental difference—became foundational to misunderstanding autism for decades. John Bowlby’s attachment theory, developed from observing traumatized post-WWII refugee children separated from mothers, was incorrectly generalized to autistic children whose symptoms sometimes resembled those of hospitalism but arose from different neurological mechanisms.

This conflation demonstrates how diagnostic categories can be shaped by observation of institutionalized populations rather than understanding of underlying conditions.

Case Study Methodology and Narrative Construction

Psychoanalytic Case Study Traditions

Kanner’s 11 initial case studies followed the psychoanalytic tradition of presenting personal narratives authored by professionals rather than patients. Each case included demographic information, life history, developmental milestones, and extensive family background—often more space devoted to family descriptions than test results or physical data.

Parental information came from various sources (written accounts, clinical notes, referrals) presented inconsistently: medical professional reports were paraphrased as factual, while parent reports were presented as quotations, suggesting greater skepticism toward parental accounts. Children appeared primarily as test-takers rather than active agents; their own words were included only to illustrate “idiosyncratic speech.”

The Construction of “foundational Myths”

This narrative structure erased individual differences while accentuating similarities, positioning autism as extraordinarily different from other conditions. Medical case studies were presented in third person with the physician-narrator “effaced,” claiming objectivity while embedding interpretive bias.

Notably, Kanner provided minimal follow-up data on outcomes: most children in his original cohort were later institutionalized, yet readers could fill blanks with either hope for cure or fear of inevitable institutionalization. The text notes this case study tradition created “foundational myths” from which “autism as a subject still has not escaped.”

Psychoanalytic Theories and Mother-Blame Framework

Competing Mother-Blame Theories

Multiple psychoanalytic frameworks converged to blame mothers for autism, despite contradicting each other:

Margaret Mahler theorized that autistic children were “stuck” in the Normal Autistic Phase, unable to differentiate self from mother, suggesting traumatic separation or maternal illness as causation.
Frances Tustin, trained under John Bowlby, interpreted autism as extreme grief reaction to loss of maternal connection, theorizing that depressed mothers prevented infants from developing normal object relations.
Melanie Klein proposed that infants who refused the breast expressed hostility toward the mother and used psychoanalysis on children as young as two, interpreting play and drawings through Freudian symbolism without accessing the child’s actual thoughts.
Kanner’s “refrigerator mother” theory suggested that cold, distant maternal affect caused autism.

The Fundamental Misogynistic Logic

All three theorists, despite different specific theories, shared a common target: mothers. Even when theories contradicted (Mahler’s “smother-mother” creating symbiosis vs. Kanner’s “refrigerator mother” of emotional distance), mothers faced blame regardless. This represented a fundamental misogynistic logic: mothers could not simultaneously be too warm or too cold; they were blamed for either condition.

Eric Schopler later noted that when treatment failed, “the clinician’s role as authoritative expert is seriously threatened,” leading to scapegoating. Jane Taylor McDonnell characterized this as projection of clinicians’ own guilt at inability to treat autistic children onto mothers.

Child Guidance, Mother-Blaming, and Cultural Misogyny

Systemic Gender Dimensions of Mother-Blame

Mother-blaming was intrinsic to the Child Guidance movement from its inception and aligned with mid-20th century anti-female sentiment. Psychologist Ernest Groves declared that even typical mothering was pathological.

Middle-class female professionals (social workers) enforced dictates of male psychologists and psychiatrists, with Molly Ladd-Taylor noting that “skilled professional women, as well as men, earned legitimacy through devaluing the mothering skills of non-professional women.”

Intersection With Cultural Misogyny

This converged with broader cultural misogyny, exemplified by Philip Wylie’s 1943 “A Generation of Vipers,” which blamed “momism”—mothers meddling in family life—for emasculating men. The combination of Child Guidance ideology, psychoanalytic theory, and cultural misogyny created a self-reinforcing system resistant to evidence.

Diagnostic Exclusion and Racial Bias

When mothers didn’t fit one stereotype, alternative psychoanalytic theories provided alternate blame. Dorothy Groomer’s African-American son didn’t fit the “white, upper-middle-class, bright” autism profile, so diagnostic teams rejected her evidence of autism criteria despite her son meeting established diagnostic criteria, resulting in decades of misdiagnosis.

This demonstrates how mother-blame intersected with racial discrimination in diagnostic practices, creating systematic barriers to accurate diagnosis for marginalized families.

Missed Medical and Genetic Research Opportunities

The Dominance of Psychoanalysis

While psychoanalysis dominated autism discourse, medical research largely passed autism by. Organic psychiatry was “widely considered a failed pathway espoused by forgotten old men near retirement age.”

Important Missed Connections

Important discoveries with implications for autism went unintegrated:

Phenylketonuria (PKU): Discovered by Asbjörn Fölling in 1934—a metabolic disorder causing intellectual disability, repetitive behaviors, and digestive disturbances similar to autism—took 20 years to publish. Robert Guthrie’s PKU screening method, developed in the 1950s, wasn’t widely implemented until mandatory newborn screening began in 1966.
Chromosomal syndromes: Geneticists discovered Down syndrome, Turner syndrome, and Klinefelter syndrome in 1956-1959; autistic traits appear frequently in Turner syndrome and autism occurs more frequently in Down syndrome, yet this data was ignored by mainstream psychology and psychiatry.

These missed connections represented opportunities for understanding biological mechanisms that were overshadowed by psychoanalytic dominance.

Geographic and Demographic Inequities in Diagnosis

Initial Demographic Bias

Kanner’s original cohort included nine children of “Anglo-Saxon descent” and two Jewish children—in a US population only 2% Jewish, appearing statistically significant. Most families were upper-middle-class, but this reflected which parents could access expert diagnosticians, not autism’s true demographics.

Yet autism became codified as a disease of upper-class, high-achieving, often Jewish families. This had global consequences creating cascading health inequities.

International Variations

Russia: Autism was defined as a “disease of capitalism” and “couldn’t possibly exist under communism,” so autistic symptoms received different labels and research was driven underground; modern Russian diagnosis remains reluctant.
South Korea: Mothers blamed themselves for poor prenatal care or bad parenting, preferring Attachment Disorder diagnosis to avoid genetic blame.
African-American families: Systematically excluded from diagnosis because their children “did not fit the classic mould: white, upper middle class, and very, very bright,” receiving “emotionally disturbed” diagnosis instead despite meeting autism criteria.

Systemic Diagnostic Barriers

Autism’s construction as middle-class phenomenon meant diagnosis required access to elite clinicians and fit narrow demographic profiles, creating systematic diagnostic barriers for marginalized populations that persist today.

Medical and Psychological Harm: Dangerous Interventions

Institutional Abuse and Experimental “treatments”

Institutional settings housed autistic children and used harmful “treatments” reflecting era-specific misconceptions.

Dr. Lauretta Bender (1897–1987) at Creedmoor State Hospital used electroconvulsive therapy (ECT) on at least 100 “schizophrenic” children as young as age two without anesthetics or muscle relaxants, producing decreased agitation through induced brain damage. She later experimented with LSD-25 and its derivative UML-491 on approximately 100 children, administering daily doses for months or years, theorizing autism resulted from “deliberate psychic mechanisms” as reactions to trauma.

Mental health advocate Ted Chabasinski survived Bender’s ECT at age six plus repeated rape by staff before release.

The “biological Revolution” and Pharmaceutical Harm

During the 1960s-1980s, medical psychiatry’s “biological revolution” proved generally harmful:

Fenfluramine: A discredited diet pill marketed for autism based on a three-subject trial, caused serious heart damage and was removed from the market. Bernard Rimland documented that fenfluramine achieved its effects by “poisoning brain cells” despite death being listed as a known side effect.

Systematic Institutional Abuse

Institutionalized autistic children and adults were used depressingly often in drug trials and medical experiments, including the Willowbrook hepatitis trials (1963-1966) where children were deliberately infected with hepatitis virus—arguably worse than the Tuskegee syphilis study where subjects already had disease upon enrollment.

The Ely Hospital scandal (1967) exposed systematic abuse: children like “Jimmy Jones” lived without education, personal possessions, or teeth (extracted to save staff cleaning time), with staff responding to distress behaviors with physical punishment rather than understanding.

The Medical Model Limitations

The construction of autism followed the medical model of disability, defining disability as wholly within the individual, positioning the body as a site requiring normalization through drugs, surgery, behavioral training, or other medical treatments. This model:

Values observable, replicable evidence over personal experience
Operates from arbitrary “normalcy” assumptions
Doesn’t recognize difference as potentially having positive value
Provides no answers for those who couldn’t be normalized or cured

The alternative social model of disability (developed by disability studies pioneers like Mike Oliver) distinguishes effects of physical/mental impairment from effects of bias, social exclusion, lack of support, and socioeconomic causes of disablement. It recognizes:

Disablement as collective experience initiated and maintained by social and physical structures
Environmental and social changes as solutions rather than individual body/mind changes
Disability as relationship between individual conditions and social environment

Autism’s medicalization and definition as pathological meant affected families were also pathologized. Attempts to trouble these definitions met strong resistance—with child psychiatrist Robert Coles noting the typical response: “This is a closed, totalitarian system. If you have any doubts, leave them at the door.”

Applied Behavior Analysis (aba): Effectiveness and Serious Concerns

Development and Implementation

Ivar Lovaas (1927–2010), a Norwegian-born psychologist working at UCLA, attached behaviorist methodology specifically to autism from the early 1960s forward. His approach, Applied Behavior Analysis (ABA), broke tasks into discrete steps repeated through “discrete trials,” rewarding or punishing compliance.

The cornerstone Young Autism Project (begun 1970) provided 40 hours weekly of intensive ABA to 19 children, compared against control groups receiving standard services. Lovaas claimed 9 of 19 children reached “normal functioning” levels, though these children functioned at the very low end of normal IQ (just above 70) and their mainstream inclusion may have resulted more from parental advocacy, compliance training, and California’s general mainstreaming trend than autism amelioration itself.

Methodological Limitations and Ethical Concerns

The study had significant methodological limitations: the control group was not properly matched, and children who returned to institutions without educational programs regressed, suggesting environmental factors played crucial roles.

However, ABA has generated serious concerns:

Lovaas himself used aversive punishments (“spank them, and spank them good”), discussing shocks and other pain-based interventions
He made deeply dehumanizing statements equating autism with non-personhood: “You have a person in the physical sense…but they are not people in the psychological sense. One way…is to see it as a matter of constructing a person.”

Outcomes and Impact

Julia Crowder’s account of home-based ABA for her son Drew described intense emotional labor—40 hours weekly spent on simple tasks like nose-touching for food rewards—though Drew eventually attended mainstream school and college, retaining some autistic traits but achieving functional independence.

For others like Noah Greenfeld, ABA failed; when Noah didn’t respond within six months, Lovaas recommended a 36-hour food-and-water fast that made the child ill rather than motivated. Many autistic adults now live with lasting impact from ABA chosen by parents, including increased rates of post-traumatic stress disorder (PTSD).

The Families for Early Autism Treatment (FEAT) advocacy group aggressively promoted ABA through lawsuits and pressure campaigns to achieve state-level recognition as the only “evidence-based” approach—allowing insurance and Medicaid coverage—despite most evidence presented being single-child case studies rather than rigorous group research.

Teacch: a Strength-Based Alternative Approach

Philosophical Foundation

On the East Coast, Eric Schopler (once a Bettelheim student who became his earliest critic) and Gary Mesibov developed Treatment and Education of Autistic and related Communication handicapped CHildren (TEACCH) at the University of North Carolina, beginning in 1972.

Mesibov stated: “people are more complicated than reinforcement and punishment—it matters how your brain processes things, the social situations you’re working in.” TEACCH rejected the goal of making autistic children “normal,” instead building on autistic strengths in visual discrimination and visual memory.

Core Techniques and Principles

Core techniques included structured teaching (tasks broken into small steps but in meaningful, everyday contexts rather than isolated trials) and environmental adaptations:

Study carrels reducing distractions
Visual timetables for predictable scheduling
Uncluttered walls and organized environments
Color-coding and labeling to help students navigate spaces

Cultural Adaptability and Global Impact

TEACCH methods proved highly portable across cultures—Mesibov noted the program’s “power is that there is no one strategy or technique” and it remains the most widespread autism education model globally, though its core principle of seeing autism as culture faces resistance in mainstream systems focused on normalization.

Understanding cognitive patterns—theory of mind, weak central coherence, and executive functioning—allowed educators to leverage strengths: picture-based task schedules use visual processing strengths; staff explicitly stating thoughts rather than expecting guessing improved communication.

Cognitive Research and Practical Accommodations

Institute of Psychiatry Research Breakthroughs

Research at the Institute of Psychiatry (London) in the 1970s-1980s developed three crucial insights about autism’s cognitive profile:

Theory of mind difficulties—the ability to understand one’s own mental states and use this to predict others’ minds. Autistic people often struggle with this ability, though many develop understanding of complex systems and others’ behavior through intelligence and reasoning, typically taking longer than typical development. For those with concurrent intellectual disabilities, theory of mind understanding may be severely impaired or impossible.
Weak central coherence—difficulty combining detailed information into a coherent whole. The superior detail-focus in autism makes it harder for autistic people to process information holistically. This represents a fundamental difference in how autistic brains prioritize and integrate sensory and cognitive information. Rather than purely deficient, this cognitive style reveals autistic strengths in pattern recognition and detail focus.
Executive functioning difficulties—planning to achieve goals while responding flexibly to change. All three cognitive processes interconnect, with strengths or difficulties spilling across areas.

Practical Applications

This research was crucial because it explained atypical functioning as sensible responses to cognitive differences rather than deliberate defiance—inflexibility as responding to unknown futures, behavioral difficulty as strategy-generation problems.

These insights enabled practical accommodations:

Picture-based task schedules leveraging visual processing strengths
Staff explicitly stating their thoughts rather than expecting guessing
Structured environments compensating for planning and sequencing difficulties

These “relatively simple steps” significantly improved communication and reduced anxiety for autistic individuals. Research demonstrated that appropriate special education and speech therapy had the highest correlation with independence and optimal functioning—far more than medical or quasi-medical therapies.

Parent Activism and Service Development

Historical Context and Organizing Challenges

Post-war institutionalization, housing shortages, increased maternal workforce participation, and maternalist pressure created conditions for parent organizing. Parents faced a terrible double bind: blamed for causing autism through psychotherapy discourse, yet their children were sometimes barred from services available to other disabled children due to stigma.

The National Autistic Society (NAS), founded in the UK in 1962 following Helen Green Allison’s BBC broadcast, was the world’s first autism-specific parent organization. Fundraising proved extremely difficult due to stigma: the NAS increased membership from 63 in June 1962 to several hundred by 1964 with practically no donations, forcing parents to cash in insurance policies, take out mortgages, sell Christmas cards, and collect used postage stamps.

Class Dimensions and Resource Barriers

This activism had class dimensions—poor and working-class families had no houses to remortgage and no insurance to draw on, forcing them to “go it alone” or accept forced institutional placement. Parent groups created their own schools, day centers, and residential communities where state services were unavailable.

Parent Narratives and Cultural Impact

Parent narratives—thousands published as books, essays, and clinical accounts—fell into pathographies (illness narratives) and accounts of specific therapies.

Clara Claiborne Park’s The Siege (1967), written partly to counter Bettelheim’s Empty Fortress, provided a powerful narrative that rejected quick cures, deciding her daughter Jessy needed “respect for her personal integrity, support for her special talents and assistance with those tasks she found difficult.” This became a watershed event credited with changing autism discourse.

Joan Martin Hundley’s The Small Outsider (1971), by a working-class folk musician and stenographer, provided empathetic understanding; her dream sequence imagining her son’s inner experience proved surprisingly prescient about autism’s actual sensory-perceptual nature.

These narratives demonstrated different approaches to supporting autistic children beyond cure-focused frameworks.

Parent-Researcher Models and Challenging Professional Authority

The Parent-Researcher Tradition

Therapies demanding 40 hours weekly of one-on-one parental work positioned parents as primary service providers, creating a parent-therapist role gaining favor in both parent communities and mainstream society. A third route was parent-researcher, crucial to autism research from the late 1950s forward.

Bernard Rimland (1928–2006), a California research psychologist and autistic child’s parent, rejected both his training and Bettelheim’s theories after close observation. His 1964 book Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior collected medical research on physical differences (immune function, visual processing, biochemistry, prenatal anomalies), creating a “resistance manual” prosecuting psychological theories.

Professional Resistance and Gatekeeping

Rimland founded the National Society for Autistic Children (later Autism Society of America) in 1965, using Life magazine reader inquiries to seed mailing lists. His pursuit of orthomolecular psychiatry (megadose B vitamins) kept him outside mainstream funding and journals, but parents became his strongest champions—he spoke their language and had their ear.

Lorna Wing (1928–2014) and Paul Shattock in the UK became well-known researchers. Because mainstream funders were reluctant, parent organizations funded substantial autism research. Parent-researchers faced devaluation by professional peers; Lorna Wing acknowledged pressure to “keep her head below the parapet” but found allies in scientists rather than psychoanalysts at the Institute of Psychiatry.

She considered herself “lucky” working where “scientists but not psychoanalysts” prevailed. Uta Frith noted Rimland’s book “impressed” her during her PhD, inspiring rigorous experiments by British researchers like Beate Hermelin, Neil O’Connor, and Michael Rutter that founded developmental neuropsychiatry approaches.

However, Bettelheim and others dismissed Rimland for being a parent, “unable to be objective”—a gatekeeping tactic that persisted despite parent-researchers’ contributions.

Contemporary Implications and Future Directions

Diagnostic Evolution and Expansion

The development of consistent autism criteria (the triad of impairments, DSM-III definition, standardized instruments) enabled reliable research and reduced arbitrary diagnosis. However, diagnostic tools themselves reflected the populations they were tested on (mostly white, male, middle-class children), perpetuating disparities.

Prevalence increases from 1 per 10,000 (1960s) to 1 per 68 (contemporary) resulted from improved diagnostic tools and reduced stigma—representing genuine progress in identification rather than actual increase in autism rates.

Research Funding Priorities and Community Concerns

The Combating Autism Act (2006) directed $950 million over five years primarily to genetic research despite autistic self-advocates’ stated preference for inclusion and support research. Genetic confidentiality became impossible after commercial genealogy databases proliferated; consent forms promise anonymity despite re-identification being technically feasible.

Autistic Self-Advocacy and Neurodiversity Movement

The Neurodiversity framework emerged from autistic self-advocacy rather than clinical innovation. Jim Sinclair’s “Don’t Mourn for Us” (1993) and the founding of Autistic Network International established theoretical foundation for contemporary self-advocacy movements.

The Autistic Self-Advocacy Network (ASAN) (founded 2006) achieved unprecedented institutional influence, though autistic priorities remain structurally subordinate to parent-led organizations, researchers seeking funding, and medical professionals.

Ongoing Challenges and Considerations

When to Seek Professional Support: While this history reveals problems with institutional psychiatry and psychology, autistic people seeking support need professional help for mental health conditions, seizure management, medical conditions, gender/sexuality questions, and trauma from institutional abuse.

Genetic Privacy Risks: Anyone considering participation in genetic research should understand that genetic samples can be re-identified despite promises of anonymity, and genetic data can be used to infer information about biological relatives who did not consent.

Healthcare Access Inequities: Systematic diagnostic barriers persist for girls and women, autistic people of color, multiply marginalized autistic people, adults, non-English speakers, and rural populations.

Cultural Context in Global Mental Health: Rapid diagnosis increases in under-resourced countries without corresponding services access raise questions about whether this represents beneficial knowledge-sharing or colonial export of inappropriate, culturally-specific, unaffordable practices.

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