Capítulo 4
The Blame Game: Mothers Under Attack
In 1966, twenty-four-year-old Rita Tepper faced devastating guilt after her son Steven was diagnosed with autism at age two. At Bellevue Hospital, she was required to undergo treatment herself, based on the premise that mothers were part of their children's autism problem. During group therapy sessions, mothers desperately searched their memories for moments when they might have traumatized their babies.
Rita eventually "confessed" that when Steven was born with jaundice, she had privately thought he looked "like a chicken." Combined with his early difficulties-resisting cuddles, sleep problems, and feeding issues-Rita concluded she hadn't shown enough love, especially compared to her experience with her neurotypical daughter Alison.
The "refrigerator mother" theory had taken root in 1948 when Time magazine published "Frosted Children," suggesting autism resulted from "cold parents freezing their children." By the 1960s, this cruel theory dominated psychiatric thinking, placing devastating blame on mothers while offering no real understanding of autism's true nature.
Bruno Bettelheim became America's most trusted authority on child psychology in the 1950s and 60s despite lacking formal medical or psychological credentials. With only a doctorate in art history, the former Austrian lumber merchant leveraged his wit, intelligence, and Viennese accent to become a bestselling author, magazine cover subject, and television personality.
After arriving in America in May 1939-traumatized, underweight, and stripped of his savings-Bettelheim remarkably transformed himself. Within a decade, he had constructed a new identity and was running the Sonia Shankman Orthogenic School at the University of Chicago, where he claimed extraordinary success in treating disturbed children.
Bettelheim's concentration camp experience became his ace credential. His 1942 essay on prisoner psychology in Nazi camps established him as an authority on trauma. By 1967, his book "The Empty Fortress" made him autism's leading interpreter, where he argued that children with autism were responding to cold, threatening environments by "deliberately turning their backs on humanity." He explicitly compared autistic behaviors to those of concentration camp prisoners and blamed mothers, portraying them as emotional equivalents to Nazi guards who crushed their children's spirits.
Even Leo Kanner, who initially described autism as "inborn," shifted in 1949 to blame parents-particularly mothers-for their children's condition. Despite previously praising Mary Triplett's parenting abilities, Kanner now portrayed her and other parents as cold, obsessive, and detached. Tellingly, it was only after Kanner began using the "refrigerator mother" terminology that his work gained attention.
By 1966, however, Kanner quietly returned to his original position that autism was biological, not caused by parenting. At a 1969 parent gathering, he publicly denounced Bettelheim's mother-blaming theories and dramatically "acquitted" parents, causing an emotional outpouring from the audience. Unlike Kanner, Bettelheim never changed his stance, continuing to promote the harmful theory on national television as late as 1971.
Capítulo 5
Parents Fight Back: The Birth of Autism Advocacy
Bernard Rimland's quest to understand his son Mark's autism led him to discover the term while searching through old psychology textbooks. This discovery ignited his lifelong mission to understand autism's causes and potential treatments. Upon researching the condition, Rimland was outraged to find the prevailing "refrigerator mother" theory that blamed mothers like his wife Gloria for causing autism.
For over two years, Rimland meticulously gathered every published case of autism-about 230 in total-analyzing them to test the refrigerator-mother theory. His findings demolished it: most mothers with autistic children also had neurotypical children; psychotherapy failed to cure autism; and there was no pattern of traumatic events in autistic children's early lives. Instead, he found evidence suggesting biological and possibly genetic origins.
In 1964, Rimland published "Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior" with a foreword by Kanner himself. Though not a commercial sensation, the book became a lifeline for parents seeking liberation from guilt. Its included diagnostic questionnaire unexpectedly connected Rimland with countless families who began sending him their completed forms, creating the first informal autism network.
Ruth Sullivan, a former army nurse with medical training, rejected the refrigerator mother theory outright. With seven children but only one with autism, she had living proof the theory was wrong. After moving to Albany, Ruth gathered names and contact information from other mothers at a psychiatrist-led support group, then formed her own action-oriented organization. They met regularly to research communication methods, strategize about education laws, and engage with media.
Through a chance connection sparked by Robert Crean's groundbreaking TV show about his autistic son, Sullivan and Rimland discovered each other. Despite working separately-Sullivan organizing mothers in Albany and Rimland connecting with hundreds of families through correspondence-they quickly recognized each other as natural allies. On November 14, 1965, between thirty and sixty parents gathered at Herbert and Rosalyn Kahn's home in Teaneck, New Jersey, forming the National Society for Autistic Children (NSAC).
The electric atmosphere reflected years of isolation finally broken, as parents shared stories and laughter about their children's autism. With Mooza Grant named president, a puzzle piece logo chosen, and dues set at two dollars yearly, the parents left feeling transformed. "For the first time," Ruth would later say, "we had hope."
Capítulo 6
From Institutions to Education: The Long Road to Rights
In January 1971, the Gibsons' struggle with their autistic son Dougie reached a tragic end. After years of financial sacrifice and institutional rejection, Alec Gibson shot his thirteen-year-old son in a misguided act he considered mercy. The family had exhausted all options-selling their home, furniture, and investments to pay for special programs that never worked. Though his lawyer argued temporary insanity, Alec received a life sentence. The tragedy ultimately catalyzed change-state education officials suddenly engaged with autism families, leading to a $200,000 federal grant that established what would become the influential UCSB Koegel Autism Center.
Born in 1913, Archie Casto was Herman and Clara Casto's healthiest, most beautiful baby. By age three, he wasn't speaking and constantly put himself in danger, ignoring his mother's calls. At five, a doctor pronounced him "insane" rather than deaf, devastating his parents. They committed him to Huntington State Hospital, formerly the "Home for Incurables." His sister Harriet was forbidden to mention him again.
Inside the institution, Archie ceased to have a history-no letters, friends, or photographs documented his existence beyond census records every decade and rare court appearances. His entire universe became just two or three ward rooms shared with dozens of others, behind locked doors. During his long institutional confinement, Archie lost his language, failed to develop, and withdrew further into himself. His smile eventually disappeared, replaced by what his sister Harriet called his "stony look" of pure hopelessness.
Tom Gilhool wasn't initially familiar with PARC when two parents approached him about suing Pennsylvania in 1969. But he had personal experience-his brother Bobby had been institutionalized at Pennhurst since 1953. After presenting just four expert witnesses who testified that all "retarded" children could learn and benefit from education, the state's attorney surprisingly announced, "Your Honors, we surrender."
Given the opportunity to draft the consent decree, Gilhool demanded that every "mentally retarded" child in Pennsylvania be located and provided a free public education "appropriate to his learning capacities." By 1973, about thirty federal court decisions had affirmed these principles, and state legislatures nationwide began updating laws to guarantee education for the mentally disabled.
For exactly seven days in 1974, six-year-old Shawn Lapin became the most visible person with autism in America when he appeared in Newsweek's cover story on "troubled children." His parents, Connie and Harvey Lapin, had made it their mission to gain maximum attention for their son and connect with anyone who might help him. They embodied the new paradigm for autism parents: determined to create an opening in the world for their child by changing the world itself.
Harvey and Connie were an energetic, attractive couple in their early thirties-he a successful dentist with Hollywood clients and a big personality, she model-like and adept at translating Harvey's rapid-fire thoughts. When their son Shawn was diagnosed with "classic autism," they faced rejection from multiple schools and harmful "treatments" before reluctantly considering Camarillo State Hospital.
Despite its reputation as the "best" autism program among state institutions, Camarillo's chief psychiatrist Norbert Rieger surprised them after their tour by advising: "Go home and figure it out. This is the last place you want your son." This moment transformed the Lapins into determined activists. Harvey quickly rose through the National Society for Autistic Children (NSAC), eventually becoming national president and moving its headquarters to Washington DC to be closer to political power.
Capítulo 7
Behavior, Science, and Controversy: The Treatment Wars
Before LSD became illegal and culturally notorious, it enjoyed a period of scientific respectability. In 1959, New York psychiatrist Alfred Freedman administered LSD to twelve autistic children at Brooklyn's League School, hoping to induce speech in non-verbal subjects. Despite detailed observations of their reactions, Freedman ultimately reported "the hoped-for change from muteness to speech did not occur."
Norwegian-born psychologist O. Ivar Lovaas, disillusioned with ineffective psychoanalytic approaches, began using electric shocks on autistic children in 1965. His initial experiments at UCLA involved twins with autism standing barefoot on an electrified floor, receiving painful shocks that would stop only when they responded to commands or ceased repetitive behaviors. Later, Lovaas employed a cattle prod delivering 1,400 volts to institutionalized children with severe autism.
In May 1965, LIFE magazine published disturbing photographs showing children being subjected to what appeared to be abuse-a boy being slapped, a girl receiving electric shocks-all under the supervision of men in neckties at UCLA's laboratory. The accompanying text described this as "A surprising, shocking treatment helps far-gone mental cripples," introducing the American public to Lovaas's controversial behavioral methods.
Applied behavior analysis (ABA) wasn't invented by Lovaas but emerged from work at the University of Washington in the late 1950s. In 1962, Sidney Bijou, who had studied under Skinner, was contacted about a troubled three-year-old named Dicky who had autism. Two behavior analysts took on the case, producing the groundbreaking "Dicky study" published in 1964.
Dicky exhibited severe autistic behaviors: he recited TV commercials verbatim but couldn't use language normally, couldn't tolerate being touched on his head, and had violent self-harming tantrums. Wolf and Risley first addressed Dicky's tantrums by implementing a revolutionary "time-out" procedure-the first scientifically controlled use with a human, adapted from pigeon studies. Without attention as reinforcement, his tantrums dramatically decreased over weeks.
In 1981, Lovaas published "Teaching Developmentally Disabled Children," better known as "The ME Book"-a DIY handbook for parents wanting to practice Applied Behavior Analysis (ABA) at home. The Lovaas Model faced strong opposition because it still advocated limited use of "aversive therapy" or punishment. Though the book recommended using punishment sparingly and scientifically, this position emerged just as organizations began taking official stands against behavioral punishment.
Throughout the 1980s, the "aversives issue" became autism's defining conflict, centering on a fundamental ethical question: When do ends justify means? The debate was particularly intense regarding self-injurious behaviors. Bernie Rimland acknowledged the dilemma, noting that while electric shock was repugnant, it was "not nearly so repugnant as some of the things self-injurious people do to themselves, such as causing blindness, fracturing skulls," or worse.
Eric Schopler, a psychologist at the University of North Carolina, emerged as a major figure in autism treatment who would soon become Lovaas's intellectual rival. Known for his unpretentious style, Schopler made his mark by insisting that autism was organic in nature and that mothers should be seen as allies in treatment rather than causes of the condition.
Schopler and Reichler's breakthrough came when they worked with three-year-old David, who had been heavily medicated on Stelazine. After taking him off the drug, they used structured one-on-one interaction, discovering that David responded to visual stimuli and rewards for imitative behavior. When David's mother Mardy asked to observe sessions, Schopler invited her behind the one-way mirror-a momentous decision. Mardy began repeating their techniques at home and innovating her own approaches, magnifying the therapy's effects. Within two and a half years, David transformed from a non-verbal child to one who could speak, relate to others, and attend regular kindergarten.
Capítulo 8
The British Perspective: Understanding Autism's Nature
While American autism researchers focused urgently on treatment and cure, their British counterparts took a calmer, more curiosity-driven approach aimed at understanding the autistic mind. This distinctive British approach, maintained for five decades, produced insights that permanently altered global perceptions of autism.
The brick house at Florence Road in London's Ealing neighborhood became the center of groundbreaking autism research after 1965. While American researchers sought urgent solutions, British scientists like Neil O'Connor and Beate Hermelin focused on understanding autism's fundamental nature through rigorous experimentation.
Their ingenious black box experiment revealed subtle but significant differences in how children with autism processed visual information. Children with autism showed unusual interest in dark, empty spaces within the box, while control subjects ignored these areas. Through multiple similar experiments over five years, they discovered that many children with autism relied more on touch than sight or hearing. Their work produced concrete data proving autism had a neurological basis-scientific evidence that autism was related to brain function, not parenting.
Victor Lotter, a South African psychologist who overcame ankylosing spondylitis that curved his spine and delayed his education, arrived in London in 1963 to conduct the world's first autism prevalence study. Assigned by Neil O'Connor to determine autism rates in Middlesex County, Lotter faced two enormous challenges: the physical task of surveying 78,000 children born between 1953-1955, and the conceptual problem of defining what autism actually was.
With no biological markers available, autism diagnosis relied entirely on subjective behavioral observation. Lotter created his own diagnostic framework by combining Kanner's criteria with "Creak's Nine Points," developing a 22-item checklist sent to schools and hospitals. Through personal observations, testing, and emotionally draining home visits, he further reduced the list to 61 children.
In a final arbitrary decision, Lotter simply drew a line after the 35 most severely affected children, counting only them as having autism. This produced the first-ever autism prevalence rate: 4.5 in 10,000. Though this figure would become the baseline for all future comparisons, Lotter himself acknowledged its limitations, concluding that "'True' prevalence may not be a useful concept in the case of a syndrome...so poorly defined"-a lesson that would repeat itself for the next fifty years.
In 1984, a groundbreaking new model of autism emerged from a conversation between Uta Frith and her graduate student Simon Baron-Cohen at London's Cognitive Development Unit. Inspired by recent work on "Theory of Mind"-the awareness that others possess independent mental states distinct from one's own-they designed an experiment to test whether children with autism could recognize deception.
Baron-Cohen created the now-famous "Sally-Ann Test" using two dolls and a marble. The experiment was simple: Sally places her marble in a yellow box and leaves; Ann moves it to a blue box; when Sally returns, where will she look for her marble? While neurotypical children, even those with intellectual disabilities, overwhelmingly answered correctly (the yellow box where Sally left it), 85% of children with autism pointed to the blue box where they knew the marble actually was. This revealed their difficulty taking Sally's perspective-they couldn't separate what they knew from what Sally would know.
The resulting 1985 paper "Does the Autistic Child Have a Theory of Mind?" became a landmark in autism research, suggesting that autism involved a specific cognitive deficit in understanding others' mental states. This "Theory of Mind" theory transformed understanding of autism's cognitive profile.
Capítulo 9
Expanding the Spectrum: Lorna Wing's Revolution
In the mid-1980s, Lorna Wing revolutionized autism understanding by introducing the concept of an "autism spectrum" rather than a simple continuum from mild to severe. This linguistic shift had profound scientific, social and political repercussions.
Unlike most autism researchers, Wing brought unique credibility as both a psychiatrist and the mother of Susie, diagnosed with severe autism in the late 1950s. Rather than following conventional wisdom to institutionalize her daughter and undergo psychoanalysis herself, Wing redirected her career to help families like hers. She became Britain's foremost autism advocate, co-founding Britain's National Society for Autistic Children in 1962 and writing the groundbreaking 1970 book "Autistic Children: A Guide for Parents and Professionals"-the first expert-written practical guide for families keeping their autistic children at home.
Wing's spectrum concept emerged from her meticulous research with Judith Gould using the Camberwell Register, where they personally interviewed over 900 teachers and 132 children with developmental differences. Their work revealed that autistic traits appeared in countless combinations and intensities "right up to the borderline of normality." Wing proposed a "triad of impairment" framework encompassing social skills deficits, language impairments, and lack of social imagination, but emphasized these traits' flexibility and variability.
By deliberately shifting terminology from "continuum" to "spectrum," Wing encouraged clinicians to recognize autism's complex dimensionality rather than measuring severity on a simple linear scale. Wing's influence was unmatched among both colleagues and parents, making her the perfect champion for the spectrum concept.
Hans Asperger and Lorna Wing met just once over tea at London's Maudsley Hospital. Despite language barriers, this encounter proved historically significant, as Wing would later introduce Asperger's decades-old German work to the English-speaking world.
Though respected in Austria, Asperger remained virtually unknown internationally during his lifetime. His 1944 paper describing "autistic" boys had found almost no English-speaking audience when he died in 1980 at age 74. Everything changed when Wing's husband translated Asperger's 1944 paper. Wing recognized similarities between Asperger's cases and children she was treating. In 1981, she published "Asperger's Syndrome: A Clinical Account," replacing the term "autistic psychopaths" with the gentler "Asperger syndrome"-unintentionally launching a diagnosis that would sweep the English-speaking world.
Ironically, Wing never intended to create a separate diagnosis. She introduced Asperger's work solely to support her spectrum concept, believing there were "no clear boundaries separating [Asperger's syndrome] from other autistic disorders." As an activist seeking services for as many people as possible, she opposed fragmenting autism into multiple diagnoses.
Even more ironically, Asperger himself disagreed with Wing's spectrum concept. During their meeting, he maintained that his syndrome differed from Kanner's autism. In a 1977 presentation, he insisted his patients were "very intelligent children, with extraordinary originality" while Kanner's were in a "psychotic or near psychotic state"-arguing they were "basically different types" that "can and should be differentiated."
Despite Wing's intentions, Asperger's syndrome became widely diagnosed in the 1980s-90s, especially in Britain and Sweden. The World Health Organization included it in their International Classification of Diseases in 1992, creating pressure for the American Psychiatric Association to follow suit in their upcoming DSM revision.
Capítulo 10
From Advocacy to Self-Advocacy: The Rise of Neurodiversity
Alex Plank, diagnosed with Asperger's at age nine, struggled with social difficulties throughout childhood despite his high intelligence. Teachers found him exasperating for his blunt corrections and apparent lack of tact. School authorities often misunderstood his behaviors, suggesting he change his facial expressions or forcing him to listen as bullies explained why they found him annoying.
By high school, Taylor knew she wanted to be "a psychologist that helps families." In college, she worked with mentally challenged children and in 1983 joined an autism respite program in New Jersey. There she received training from Carolyn Bruey, who introduced her to Lovaas's ME Book and ABA techniques.
By seventeen, Alex created Wrong Planet (wrongplanet.net), an online community for people with Asperger's. The site exploded in popularity, reaching thousands of members within years. Online interaction removed the social pressure of eye contact and nonverbal cues that made in-person communication difficult. Wrong Planet became a vibrant community with its own social dynamics, romantic relationships, and support systems.
Once Temple Grandin stood virtually alone as someone who could articulate autism from the inside, but by the mid-2000s, thousands of voices were joining this conversation through platforms like Wrong Planet. Many participants identified with Asperger's or "high-functioning autism" (HFA).
By 2010, the CDC reported almost half the diagnosed autism population hit the upper ranges for intelligence-a dramatic shift from earlier decades when 70-80% were considered intellectually disabled. This demographic shift would fundamentally alter the politics of autism through the emerging philosophy of "neurodiversity."
In December 2007, NYU Child Study Center launched its "Ransom Notes" campaign featuring mock kidnapper letters with messages like "We have your son. We will make sure he will not be able to care for himself or interact socially as long as he lives." Though designed as a "wake-up call," the campaign was dead within eighteen days, defeated by the neurodiversity movement.
This movement traced its origins to July 1993, when Jim Sinclair, a 31-year-old autistic man, delivered what became known as the "Don't Mourn for Us" statement at a Toronto autism conference. Sinclair challenged parents directly: "When parents say, 'I wish my child did not have autism,' what they're really saying is, 'I wish the autistic child I have did not exist.'" He criticized parents for not trying hard enough to communicate with their autistic children.
The neurodiversity movement, coined by Australian sociologist Judy Singer, asserted that autism was simply one more way of being human. Its logical extension was controversial: autism didn't need a cure, and efforts to make it disappear should cease. The movement remained largely unknown until 2006, when Ari Ne'eman, a college sophomore with Asperger's, founded the Autistic Self-Advocacy Network (ASAN) with the motto "Nothing About Us, Without Us."
Ne'eman supported research on improving quality of life for autistic people and developing assistive technologies, but opposed methodologies forcing people to suppress their autistic traits to appear "normal"-including some drug development and ABA therapy. Most controversially, he rejected any scientific endeavor aimed at finding a "cure" for autism, particularly genetic research that might lead to prenatal testing and selective abortion.
"Most of us on the autism spectrum do not wake up in the morning and wish that we had never been born," Ne'eman wrote, echoing Temple Grandin's earlier statement to Oliver Sacks: "If I could snap my fingers and be nonautistic, I would not. Autism is part of what I am."
Capítulo 11
Full Circle: Donald Triplett's Life
In September 2013, Donald Triplett's friends and family gathered in Forest, Mississippi to celebrate his 80th birthday. Following the Atlantic article revealing his role in autism's early history, over a hundred local notables attended to honor their beloved neighbor.
Donald's life in Forest provided him with stability and acceptance. After graduating from Millsaps College, he returned to work at the family bank where he was given lifelong tenure despite his quirks, like addressing customers by account numbers or abandoning phone calls mid-conversation. As his capabilities changed, his duties shifted to more clerical work.
Golf became Donald's passion since 1956. His highly ritualized swing was distinctive-licking his thumbs, holding the club overhead like a pole, and performing precise rehearsal strokes before hitting the ball with surprising effectiveness. He preferred playing alone, comfortable with the game's mechanical repetitiveness.
In his seventies, Donald developed a charming way of flirting with certain women at the bank, pinging them with rubber bands and giving them nicknames like "Jan with a Plan" or "Celestial Celeste." Though his mother had once reported he showed "no interest in the opposite sex," he found ways to express affection in his later years.
The discovery of texting in his late seventies unlocked new communication abilities for Donald. Without the complexities of face-to-face interaction, he expressed himself with unprecedented fluency through text messages.
Donald became an avid world traveler, visiting over 36 countries and 28 states, always traveling alone and meticulously documenting his journeys in photo albums. He typically limited trips to six days to ensure he'd be back for Sunday Bible class at Forest Presbyterian.
At eighty, Donald remained content with his routines, playing golf in the dwindling September light-autism's first child, using the remaining daylight to get in a few last holes before dinner.
Unlike Donald Triplett, who enjoyed wealth, community acceptance, and independence in Forest, Mississippi, most adults with autism face bleak prospects. The conversation around autism remains heavily child-focused, from Kanner's original "infantile autism" label through advocacy messaging and research priorities. When autistic individuals turn twenty-one, they often lose critical support services just when they need help transitioning to adulthood.
Statistics reveal approximately 50,000 adolescents with autism turn eighteen annually, potentially adding half a million to the adult autistic population by 2023. Over half have never held paid jobs, and 80% of severely affected individuals still live with aging parents. Most face limited options: staying in childhood bedrooms or moving to minimally staffed group homes with little autonomy or purpose.
Despite these challenges, innovative approaches are emerging. Thorkil Sonne's Danish company Specialisterne employs autistic adults as software testers, leveraging their attention to detail and memory skills. Ilene Lainer developed a "foster family" housing model as an alternative to impersonal group homes.
Pete Gerhardt envisions a world where acceptance of autistic differences becomes widespread and automatic. A bus incident in New Jersey demonstrates this possibility-regular passengers had formed an impromptu community that included and protected Nicholas. As the defender said to the bullies: "What's his problem? He's got autism. So what's your problem?" This spontaneous defense shows how neighbors can decide the odd man out is "one of us." As Gerhardt concludes, "It happened on a bus in New Jersey. It can be that way anywhere."
