In a Different Key: The Story of Autism (80 page)

1944

Hans Asperger publishes his postgraduate thesis, “Die ‘Autistischen Psychopathen’ Im Kindesalter.” Largely overlooked for most of the next four decades, it will lead to the recognition of Asperger’s syndrome.

1947

Donald Triplett is hospitalized with juvenile rheumatoid arthritis
.

1948

In an article in
Time
magazine, Kanner describes children with autism as being “kept neatly in a refrigerator which didn’t defrost” by their withholding parents. His metaphor will give rise to the phrase “refrigerator mother”—a mother whose cold and rejecting behavior was said to have caused her child’s autism.

1959

Researchers conduct experiments in which they administer LSD to children with autism, partly in the hope of facilitating speech. The experiments are unsuccessful, and the research is later abandoned, as LSD becomes stigmatized and hard to obtain.

Psychiatrist Lorna Wing’s three-year-old daughter is diagnosed with autism
.

1960

Donald Triplett, now twenty-seven, learns to drive
.

1961

British child psychiatrist Mildred Creak publishes “Nine Points,” an attempt to define the criteria for diagnosing “Schizophrenic Syndrome in Childhood,” one of many competing descriptions for clusters of autistic traits.

1962

A group of parents in Britain founds what will become the National Autistic Society, the first autism organization.

1963

British psychologists Beate Hermelin and Neil O’Connor conduct experiments, the results of which strongly suggest a biological rather than a psychogenic basis to autism. They will continue this research through 1970.

Ruth and William Sullivan’s son Joseph is diagnosed with autism
.

1964

Bernard Rimland, a psychologist and parent of a son with autism, publishes
Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior
. Its attack on the theory of the refrigerator mother proves decisive.

Parent activist Ruth Sullivan organizes a small group of autism mothers to campaign for their children’s access to public education.

An early successful use of applied behavior analysis (ABA)—known as the Dicky study—conducted by Montrose Wolf, Todd Risley, and Hayden Mees, prevents a child with severe autism from losing his sight.

O. Ivar Lovaas, a psychologist, begins experiments using ABA at UCLA with severely affected children as his subjects. As part of his attempt to modify autistic behaviors, he administers electrical shocks.

1965

LIFE
magazine publishes an article introducing the public to Lovaas’s controversial treatment.

A group of parents founds the National Society for Autistic Children (NSAC), the first organization in the United States to campaign for the rights of children with autism. Bernard Rimland and Ruth Sullivan are prime movers.

Educator Sybil Elgar opens the first school for autistic children in the United Kingdom.

1966

South African psychologist Victor Lotter publishes the first prevalence study on autism, based on his survey of eight- to ten-year-olds in Middlesex County, England. His finding of 4.5 cases per 10,000 children will become the baseline for all subsequent prevalence reports.

Psychologists Eric Schopler and Robert Reichler launch a pilot program at the University of North Carolina that will lead to the establishment of TEACCH (Treatment and Education of Autistic and Related Communication Handicapped Children).

1967

Bruno Bettelheim, director of the Orthogenic School at the University of Chicago, publishes
The Empty Fortress: Infantile Autism and the Birth of the Self
and it becomes a bestseller. The book blames autism on psychological trauma, usually inflicted by mothers during childhood.

Burton Blatt, an educator, and Fred Kaplan, a photographer, publish
Christmas in Purgatory
, a graphic exposé of the “hell on earth” they discovered inside several American institutions for the intellectually disabled.

Rita and Jerry Tepper’s son Steven is diagnosed with autism
.

1969

At the annual meeting of the National Society for Autism, Kanner gives a speech in which he “exonerates” parents of responsibility for their children’s autism.

1970

Lorna Wing, psychiatrist and mother of a daughter with autism, publishes the first book aimed at parents about the challenges of raising a child with autism:
Autistic Children: A Guide for Parents and Professionals
.

Alice and George Barton adopt Frankie, a six-year-old boy with severe autism, from an orphanage in California
.

1971

Tom Gilhool, an activist and lawyer, represents the Pennsylvania Association for Retarded Children in a lawsuit demanding access to public education for children with developmental disabilities. Gilhool wins, after which many other states follow Pennsylvania’s lead in changing their laws to accommodate such students.

Activist parents Mary Lou “Bobo” Warren and Betty Camp succeed in getting the North Carolina State Legislature to pass a bill funding TEACCH, which will
become one of the most influential and widespread educational programs for children with autism.

In California, Alec Gibson kills his thirteen-year-old son with autism, thinking that he is saving him from the world’s cruelties. He confesses immediately and is given a life sentence
.

1972

Geraldo Rivera, a television news reporter, exposes horrendous conditions at the Willowbrook State School, an institution for the mentally disabled in Staten Island, whose population includes many children and adults with autism. The scandal leads to the closing of Willowbrook and increased pressure to close similar institutions.

1974

California governor Ronald Reagan signs into law a bill committing the state to educate all children, regardless of handicap.

Shawn Lapin, a six-year-old boy with autism, is prominently featured in a
Newsweek
cover story titled “The Troubled Child.”

1975

The Federal Education for All Handicapped Children Act is passed, later to be renamed the Individuals with Disabilities Education Act.

1977

British psychiatrist Michael Rutter and American psychologist Susan Folstein publish their “twin study,” significantly bolstering the understanding of autism as a condition with a strong genetic component.

1979

Lorna Wing and psychologist Judith Gould publish data that supports their argument that autism should be described as a “spectrum.”

1980

Rosemary Crossley and Annie McDonald publish
Annie’s Coming Out
, an account of how Crossley used “facilitated communication” to enable Annie, who is severely physically disabled, to communicate.

Autism is listed as a mental disorder for the first time in the
DSM (Diagnostic and Statistical Manual of Mental Disorders)
.

1981

Lorna Wing publishes her paper “Asperger’s Syndrome: A Clinical Account,” introducing Hans Asperger to the English-speaking world.

Ivar Lovaas publishes
Teaching Developmentally Disabled Children: The ME Book
, the first hands-on guide for parents and professionals on the use of ABA to treat children with autism.

1985

Psychologists Simon Baron-Cohen, Alan Leslie, and Uta Frith publish a landmark study on autism and “Theory of Mind,” the idea that individuals are aware that others possess mental states distinct from their own. People with autism, they find, often fail to employ a Theory of Mind.

1986

Temple Grandin publishes
Emergence: Labeled Autistic
, her first book about the experience of having autism.

1987

Ivar Lovaas publishes a study asserting that 47 percent of the children he is treating have achieved “recovery” from autism due to his program of ABA. Controversy erupts over the validity of his results.

1988

Dustin Hoffman stars in the movie
Rain Man
, which puts autism on the map as never before.

Archie Casto is released from Spencer State Hospital after six decades of institutionalization
.

1990

Having learned about facilitated communication (FC) at Rosemary Crossley’s lab in Australia, Douglas Biklen, an educator at Syracuse University, publishes his findings about it in the
Harvard Educational Review
. Professionals working with autistic children rapidly adopt FC.

The US Congress passes the Individuals with Disabilities Education Act. For the first time, autism is classified as a disability for purposes of entitlements.

Alison Tepper Singer’s daughter, Jodie, two years and eight months old, is diagnosed with autism
.

1993

Working with speech clinician Janyce Boynton, Betsy Wheaton, a nonverbal sixteen-year-old girl with severe autism, uses FC to accuse her family of sexual abuse. Harvard speech pathologist Howard Shane stages a rigorous experiment revealing that Boynton is herself responsible for Betsy’s communications, and that no abuse occurred. Enrollment in FC training courses plummets.

Self-advocate Jim Sinclair delivers a speech titled “Don’t Mourn for Us,” marking the birth of a movement for self-advocacy by people with autism. The speech lays the foundation for a philosophy that opposes attempts to cure autism, later dubbed “neurodiversity.”

Catherine Maurice, the mother of two children with autism, publishes
Let Me Hear Your Voice
, an account of her children’s recovery from autism using ABA. Demand for ABA explodes.

Karen and Eric London’s son, Zachary, almost two years old, is diagnosed with autism
.

1994

The American Psychiatric Association adds Asperger’s disorder to the
DSM
.

Karen and Eric London, the parents of a child with autism, found the National Alliance for Autism Research (NAAR). It is the first organization to fund biomedical research of autism.

1995

Bernie Rimland founds Defeat Autism Now! (DAN), an offshoot of his Autism Research Institute, to promote nontraditional, biomedical treatments for autism.

Portia Iversen and Jon Shestack, the parents of a child with autism, found Cure Autism Now (CAN), the second organization to raise money to fund biomedical research. Like NAAR, they also lobby for support services for people with autism.

Portia Iversen and Jon Shestack’s son Dov is diagnosed with Pervasive Developmental Disorder. He will later be diagnosed with autism
.

Alex Plank, age nine, is diagnosed with Asperger’s syndrome
.

1996

Australian sociologist Judy Singer, herself on the spectrum, coins the term
neurodiversity
and speaks of a neurodiversity movement in her dissertation.

Gary Mayerson initiates legal action to compel the Westchester County Department of Health to pay for his son’s ABA therapy. Mayerson prevails.

1997

NAAR awards its first grants, totaling $150,000, to five scientists researching autism.

CAN launches the Autism Genetic Research Exchange, a bank of DNA samples from families who have children with autism that is made available to all autism researchers.

1998

Andrew Wakefield, a British gastroenterologist, publishes a paper in
The Lancet
reporting an association between the MMR vaccine, autism, and bowel disease.

Harvey Blume writes about neurodiversity in
The Atlantic
, arguing that it “may be every bit as crucial for the human race as biodiversity is for life in general.” It is the first time the term has appeared in a mainstream publication.

1999

NAAR establishes a bank of brain tissue from children with autism for the purposes of anatomical research.

The California Department of Disability Services reports that the number of people receiving autism services has increased by 273 percent since 1987. The numbers spark fears of an autism epidemic.

The American Academy of Pediatrics and the Public Health Service recommend that thimerosal be removed from vaccines, and that pediatricians begin using thimerosal-free vaccines whenever possible. At the same time, the two organizations assert the lack of evidence that thimerosal is harmful. The move causes confusion and increases public fears about vaccines.

2000

A group of parents found SafeMinds, an organization demanding more research into vaccine safety.

Republican representative Dan Burton, chairman of the Government Reform Committee, holds hearings investigating the link between vaccines and autism. He urges the National Institutes of Health and the Centers for Disease Control to treat autism as an epidemic.

2001

NAAR and CAN cosponsor the first International Meeting for Autism Research, an event that draws autism researchers from around the world. The annual event grows to become the largest of its kind.

As a result of the controversy his work is causing, Andrew Wakefield is made to resign his position at the Royal Free Hospital.

2003

Activist Michael John Carley, diagnosed with Asperger’s syndrome shortly after his son receives the diagnosis, forms the Global and Regional Asperger Syndrome Partnership organization (GRASP) to support people on the spectrum and fight the stigma surrounding autism.

2004

Major autism organizations begin publicizing 1 in 166 as the prevalence rate of autism.

The Institute of Medicine issues a report finding that the evidence does not support a causal relationship between thimerosal in vaccines and autism.