Executive Summary
This comprehensive medical and social history traces how autism evolved from ancient supernatural interpretations through contemporary diagnostic frameworks. The book reveals how economic incentives, cultural misogyny, pseudoscience, and professional authority shaped autism’s construction—often with devastating consequences for autistic people and their families. Key themes include the dangerous persistence of mother-blaming theories, the shift from educational optimism to profitable institutionalization, the ongoing influence of eugenics ideology, and the emergence of autistic self-advocacy challenging medical authority. Understanding this history provides crucial context for contemporary debates about diagnosis, treatment, and the neurodiversity paradigm.
Historical Foundations and Pre-Modern Understanding
Pre-Modern Interpretations of Neurodivergent Behaviors
Before modern medical frameworks, societies interpreted behaviors now recognized as autistic through supernatural and religious lenses. Ancient Egyptians viewed epilepsy—affecting up to 40% of autistic people—as “the sacred disease” conferring special powers, representing one of few historical contexts where neurodivergence carried positive associations. Jewish Biblical tradition classified developmental differences as “unclean,” barring individuals from Temple service and establishing patterns of social isolation that would persist across centuries.
The changeling myth in European folklore provided a particularly dangerous supernatural explanation: the belief that fairies stole human children and left changelings in their place led to horrific outcomes, with historical records indicating children thought to be changelings were “routinely killed, exposed or abandoned.” Not all cultures responded negatively—Hindu and Buddhist ascetics were culturally permitted to deviate from social norms, and Islamic medicine pioneered mental hospitals as early as 705 AD in Baghdad, offering treatment combining prayer, herbal medicine, diet, and music therapy.
Evolutionary Context and Ancient Origins
Genetic research reveals autism-associated genetic variants emerged at least 200,000 years ago, suggesting autistic traits provided adaptive advantages in hunter-gatherer societies. These likely included superior pattern recognition abilities valuable for tracking, enhanced attention to detail beneficial for tool-making, intense focus enabling deep knowledge development, and creative problem-solving approaches. This evolutionary perspective challenges contemporary narratives framing autism purely as deficit, suggesting 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 briefly brought 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 bearing striking resemblance to contemporary therapeutic approaches: sensory integration techniques, operant conditioning using rewards and punishments, and methods leveraging Victor’s apparent visual memory strengths. Itard’s student Édouard Séguin expanded these approaches, developing techniques foreshadowing modern physical therapy, occupational therapy, and special education. Séguin’s work at Bicêtre Hospital demonstrated remarkable educational progress with children 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 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 no privacy, uniform haircuts and clothing erasing individual identity, restricted personal possessions, complete lack of knowledge about food preparation, and frequent staff changes ensuring children “never see the same person put them to bed as the one who wakes them up.”
Social Darwinism and Eugenics: Pseudoscience As State Policy
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, and “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. 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.”
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. 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.”
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.
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 and 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. 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. 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.
The Social Construction of Autism As Diagnostic Category
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. 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 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.
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. 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.” 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.
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.
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 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. Chromosomal syndromes like Down syndrome, Turner syndrome, and Klinefelter syndrome discovered in 1956-1959 revealed 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.
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 and Systemic Barriers
In Russia, autism was defined as a “disease of capitalism” and “couldn’t possibly exist under communism.” In South Korea, mothers blamed themselves for poor prenatal care or bad parenting, preferring Attachment Disorder diagnosis to avoid genetic blame. African-American families were 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. Autism’s construction as middle-class phenomenon meant diagnosis required access to elite clinicians and fit narrow demographic profiles.
Medical and Psychological Harm: Dangerous Interventions
Institutional Abuse and Experimental “treatments”
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. 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. 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.
Systematic Institutional Abuse
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.
Medical Model Vs. Social Model of Disability
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, and provides no answers for those who couldn’t be normalized or cured.
The Social Model Alternative
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, and disability as relationship between individual conditions and social environment. Autism’s medicalization and definition as pathological meant affected families were also pathologized.
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. Lovaas claimed 9 of 19 children reached “normal functioning” levels, though these children functioned at the very low end of normal IQ 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. 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. Many autistic adults now live with lasting impact from ABA chosen by parents, including increased rates of 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.
Teacch: a Strength-Based Alternative Approach
Philosophical Foundation and Core Techniques
On the East Coast, Eric Schopler 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 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. 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 explicit 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 through intelligence and reasoning. 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. Executive function 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. 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.
Class Dimensions and Parent Narratives
This activism had class dimensions—poor and working-class families had no houses to remortgage and no insurance to draw on. 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.” Joan Martin Hundley’s The Small Outsider (1971), by a working-class folk musician and stenographer, provided empathetic understanding.
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. 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, creating a “resistance manual” prosecuting psychological theories. Rimland founded the National Society for Autistic Children (later Autism Society of America) in 1965.
Professional Resistance and Gatekeeping
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. 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 Autistic Self-Advocacy
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. 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
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. Anyone considering participation in genetic research should understand that genetic samples can be re-identified despite promises of anonymity. Systematic diagnostic barriers persist for girls and women, autistic people of color, multiply marginalized autistic people, adults, non-English speakers, and rural populations. Rapid diagnosis increases in under-resourced countries without corresponding school refusal services access raise questions about whether this represents beneficial knowledge-sharing or colonial export of inappropriate practices. The concept of late diagnosis has become increasingly important as adults seek identification later in life. Understanding autistic culture and the double empathy problem provides crucial context for these contemporary developments.