Hans Asperger with two of the children he worked with.

 

I paused at a tense moment – partly to gather my thoughts, partly just to catch my breath – but now, after a few hours of rest, I feel I may have overdone the drama and momentum in the last few sections. This story, as I pointed out from the beginning, will try not only to stir emotions and invite empathy, but also to provide information – as much as I can manage. So I think it’s time for a well-deserved break and a shift toward a slightly more informative, more level-headed, and maybe even more hopeful part of the history of autism research.

And so:

1910

The term autism is credited to Swiss psychiatrist Eugen Bleuler, who in 1910 first wrote about „autistic thinking“ – a term he used to describe the thought patterns of some of his patients.

1938

Hans Asperger, a Viennese paediatrician, gives a lecture at the University Hospital in Vienna in which he describes the behaviour of boys showing marked difficulties in social adaptation, combined with high intelligence. Influenced by Bleuler, he uses the word „autistic“ to introduce the concept of „autistic psychopathy.“

In the same year, Leo Kanner, an American child psychiatrist who also came from Vienna, receives a 33-page letter from Beaumon Triplett, the father of Donald Triplett – a boy with severe behavioural disturbances – describing his son’s problems and requesting diagnosis and help.

1942

In a letter to Mary Triplett, Donald’s mother, Leo Kanner theorises that Donald and several other children with similar behaviours may suffer from a disorder not previously recognised. Like Asperger, he borrows the word autistic from Bleuler, calling the new disorder „autistic disturbances of affective contact.“

1943

Leo Kanner publishes Autistic Disturbances of Affective Contact, a clinical report based on a study of eleven children, which leads to the recognition of autism as a distinct syndrome.

1944

Hans Asperger publishes his dissertation Autistic Psychopaths in Childhood. Largely ignored for the next four decades, it eventually leads to the recognition of Asperger’s Syndrome.

1948

In an article for Time magazine, Kanner describes autism as a condition of children „kept neatly in a refrigerator that never defrosts.“ His metaphor spawns the phrase refrigerator mother – the notion that a mother’s cold and rejecting behaviour caused her child’s autism.

1961

British child psychiatrist Mildred Creak publishes Nine Points – an attempt to define diagnostic criteria for „childhood schizophrenic syndrome,“ one of many competing labels for autistic-like behaviour.

1962

A group of British parents found a support association that later becomes the National Autistic Society – the first autism organisation.

1964

Psychologist and autism father Bernard Rimland publishes Infantile Autism: The Syndrome and its Implications for a Neural Theory of Behaviour. His attack on the refrigerator mother theory permanently debunks the hypothesis.

Parent activist Ruth Sullivan organises a small group of mothers of autistic children to campaign for their children's access to public education.

One of the first successful applications of Applied Behaviour Analysis (ABA) – known as the „Dicky study“ and conducted by Montrose Wolf, Todd Risley, and Hayden Mees – helps a child with severe autism avoid losing his eyesight.

Ole Ivar Lovaas, a psychologist, begins experiments with severely autistic children using ABA at UCLA. As part of his attempt to modify autistic behaviour, he applies electric shock.

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, which becomes a bestseller. In it, he attributes autism to early psychological trauma, typically caused by mothers.

Educator Burton Blatt and photographer Fred Kaplan publish Christmas in Purgatory – a graphic exposé of the „hell on earth“ they discovered in several American institutions for intellectually disabled children.

1969

At the National Society for Autistic Children’s annual meeting, Kanner delivers a speech in which he publicly „releases“ parents from blame for their children’s autism.

1970

Lorna Wing, a British psychiatrist and mother of an autistic daughter, publishes Autistic Children: A Guide for Parents and Professionals, the first book to specifically address the challenges of raising such children.

1971

Activist and attorney Tom Gilhool represents the Association for Retarded Citizens of Pennsylvania in a lawsuit demanding public education access for developmentally delayed children. He wins, prompting many other states to follow Pennsylvania’s lead and amend their laws to ensure such access.

Mother activists Mary Lou (Bobo) Warren and Betty Cammie succeed in getting North Carolina lawmakers to pass a bill funding the TEACCH project – which goes on to become one of the most influential and widespread educational programmes for autistic children.

1972

TV reporter Geraldo Rivera exposes the horrific conditions at Willowbrook State School – an institution for mentally disabled people on Staten Island, housing many autistic children and adults. The scandal leads to Willowbrook’s closure and increased pressure to shut down similar institutions.

1975

The U.S. Education for All Handicapped Children Act is passed, later renamed the Individuals with Disabilities Education Act (IDEA).

1977

British psychiatrist Michael Rutter and American psychologist Susan Folstein publish a „twin study“ that greatly strengthens the view of autism as a condition with a strong genetic component.

1979

Lorna Wing and psychologist Judith Gould publish data supporting their claim that autism should not be seen as a specific mental condition but rather as a spectrum – a range of symptoms and behaviours best understood as parts of a single syndrome.

1981

Lorna Wing publishes Asperger’s Syndrome: A Clinical Account, which introduces Hans Asperger’s work to the English-speaking world for the first time.

Ivar Lovaas publishes Teaching Developmentally Disabled Children: The ME Book – the first practical ABA guide for parents and professionals to help and treat children with autism.

1986

Temple Grandin publishes her first book, Emergence: Labelled Autistic, offering a first-person account of the autistic experience and its unique challenges.

1987

Lovaas publishes a study claiming that 47 percent of children in his programme achieved „recovery“ from autism through ABA. The validity of his results sparks widespread controversy.

1988

Dustin Hoffman stars in Rain Man, bringing autism into public consciousness like never before.

1994

The American Psychiatric Association adds Asperger’s Disorder to the DSM – its official diagnostic manual.

Karen and Eric London, parents of an autistic child, found the National Alliance for Autism Research (NAAR), the first organisation to fund biomedical autism research.

1995

Bernard Rimland founds Defeat Autism Now! (DAN), a division of his Autism Research Institute, to promote alternative biomedical treatments for autism.

Portia Iversen and Jon Shestack, parents of an autistic child, found Cure Autism Now (CAN), the second major organisation raising funds for biomedical research. Like NAAR, they also advocate for autism-related support services.

1996

Australian sociologist Judy Singer, herself living with a condition on the spectrum, introduces the concept of neurodiversity and speaks in her thesis about a movement toward embracing it.

1998

Andrew Wakefield, a British gastroenterologist, publishes a paper in the medical journal The Lancet claiming to have discovered a link between the MMR vaccine, autism, and gastrointestinal disorders.

Harvey Blume writes an article about neurodiversity in The Atlantic, in which he claims that the concept (and the movement behind it) „may be as crucial for the human race as biodiversity is for life in general.“ This marks the first time the term appears in a mainstream publication.

2007

In the U.S. Court of Federal Claims, the so-called Vaccine Trials begin. Nearly five thousand families seek compensation for alleged harm, claiming their children's autism was caused by vaccines.

2010

The Lancet formally retracts Wakefield’s 1998 article after years of investigation pointing to fraudulent behaviour. Wakefield is stripped of his medical license.

At a conference in honour of Hans Asperger, Austrian historian Herwig Czech surprises the audience by revealing that Asperger likely played a role in referring disabled children to the „Spiegelgrund“ facility during World War II, where they were systematically killed. The news does not reach the English-speaking world.

The HBO film Temple Grandin wins seven Emmy Awards.

2013

Asperger’s syndrome is removed from the new, fifth edition of the DSM. All identified forms of autistic behaviour, including what had previously been described as Asperger’s syndrome, are now classified under the general term Autism Spectrum Disorder.

***

I will conclude this brief informational interlude here, and then I will return to the story of my own family, as it unfolded after the separation...