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Timeline: Autism and Advocacy

Leo Kanner gave autism its name in 1943.
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Leo Kanner gave autism its name in 1943.

Autism has always existed, says neurologist Oliver Sacks. But the condition wasn't named until 1943, so it's difficult to know much about autism's place in society before then. And more than 60 years after Leo Kanner described the developmental disorder, scientists still understand relatively little about it. Awareness about autism, however, has come a long way, thanks to researchers and a growing advocacy movement. Here, a timeline of the evolution of autism advocacy since 1943.

1943: Leo Kanner, a child psychiatrist at Johns Hopkins Hospital in Baltimore, describes the condition in 11 children. He coins the term "autism" from the Greek word autos, meaning self, owing to the withdrawn and solitary nature of the children. In his paper, Kanner hints at inadequate parenting as the cause of autism. He would later become the founder of the field of child psychiatry in the United States.

1944: Unaware of Kanner's work, a pediatrician from Vienna named Hans Asperger independently uses the word "autism" to describe four children who shared similar but milder forms of the cases reported by Kanner. All of Asperger's patients appear to be exceptionally gifted in various realms.

1949: Kanner publishes a paper in which he attributes autism to the lack of sufficient maternal care and emotional detachment of mothers from their children. This was the beginning of an era that regarded mothers of children with autism as cold, calling them "refrigerator mothers." The idea gave autism a social stigma; it was an era of severe emotional distress for families with autistic members.

1950s: Bruno Bettelheim, an Austrian psychologist teaching at the University of Chicago, begins to popularize Kanner's idea of "refrigerator mothers" through various articles. His most famous book about autism, The Empty Fortress: Infantile Autism and the Birth of Self, was published in 1967.

1964: Bernard Rimland, also a psychologist at the University of Chicago, publicly rebuts Bettleheim's ideas in Rimland's book, Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior. Rimland became involved with autism after his own son was diagnosed with autism in 1958 at the age of two.

1965: Rimland founds the Autism Society of America. The society currently has more than 120,000 members and more than 200 chapters throughout the United States. The establishment of ASA is seen as the beginning of a movement for more awareness and research on diagnoses and treatment of Autism Spectrum Disorders (ASD).

1980: Increasing data about autism and its neurological basis, in addition to the advocacy efforts of parents and relatives of those with autism, causes the American Psychiatric Association to add autism to its Diagnostic and Statistical Manual (DSM) of Mental Disorders.

1991: Lorna Wing, a psychologist from the United Kingdom, publishes an English translation of Asperger's original paper, and introduces the idea that autism includes a variety of disorders, ranging from those who have severe language, cognitive and sensory problems to those who are more mildly affected and have trouble understanding social interactions and nuances. Those on the latter end of the spectrum are of normal to higher than normal intelligence, and often are very gifted, as were Asperger's patients.

1992: Autism Network International is started by the combined effort of Americans Jim Sinclair and Kathy Grant and Australia's Donna Williams. ANI describes itself as "an autistic-run self-help and advocacy organization for autistic people."

1994: Asperger's syndrome is added to the DSM.

2003: Global and Regional Asperger Syndrome Partnership (GRASP), another self-advocacy organization, is started by Michael John Carley. GRASP's goal is to increase societal awareness about Asperger's syndrome and other forms of autism, as well as to educate people within the spectrum about their own condition by providing education and platforms within which to interact with other autistic individuals.

Copyright 2023 NPR. To see more, visit https://www.npr.org.

Rhitu Chatterjee is a health correspondent with NPR, with a focus on mental health. In addition to writing about the latest developments in psychology and psychiatry, she reports on the prevalence of different mental illnesses and new developments in treatments.