In the 130 years that Autism Spectrum Disorder has been explored and investigated, both research and the public perception has been rife with misunderstanding. Heavily influenced by the cultural stigma against mental illnesses and disorders and manipulated by sensationalism, it was decades before the push for true scientific investigation allowed for an objective and accepting understanding of autism.
This post takes a look at how autism research has developed over time, how public awareness has molded to that research or pushed for a new approach, and how autistic individuals have been treated. While our understanding of autism has evolved, we are not without our own misconceptions. Hopefully, looking back at the progression of awareness of autism can shed some light on both our successes and our missteps and help us envision where we want to be in our future awareness.
At the Beginning
Awareness of Autism
While autism was first researched much earlier, it wasn’t until 1911 that the word “autism,” was first used–and not exactly favorably. It was considered a symptom of schizophrenia. Sixteen years later and autism was still tied to schizophrenia, being described as the “trouble generator,” for the mental illness.
In the 1940s, Leo Kanner and Hans Asperger described autism and asperger’s respectively. They characterized the disorder as having high intelligence but a preference for being alone and an unyielding obsession to “sameness.” However, despite what seems like an obviously distinct diagnosis, the idea that autism and schizophrenia were intrinsically linked persisted into the 60s.
By then the idea had evolved.
Autism was now understood as a variation of childhood schizophrenia. It was thought that autism was actually a result of psychological trauma inflicted by well-educated, frigid mothers. The term “Refrigerator Mother,” was coined and thrown into the frenzy.
Research of Autism
The first research into autism would be better described as a passing curiosity. Dr. John Langdon Down (the first to describe Down’s Syndrome) began researching what we now know as autism in 1887. But it would be another 24 years before the disorder surfaced again in the public consciousness.
The next study to gain traction wasn’t until 1949–this was the study that made “refrigerator mothers,” infamous. Leo Kanner did a small study with a very select group which eventually led to the claim that autism was more likely to occur in highly intellectual families. It was “cold” mothering that traumatized the children into their unusual behavior. A man named Bruno Bettleheim capitalized on the glitzy, sensational theory that mothers were harming their children, popularizing the notion that autism was an emotional disorder. He went on to publish multiple books and appear on TV to educate the people on the dangers of poor parenting. After his death, it was revealed that not only was he not trained in psychoanalysis, but his research was falsified, most of it not even being conducted with autistic children.
Understandably, this ruffled a few parents’ feathers. Bernard Rimland, a father of an autistic son, worked tirelessly and was the first who was able to present that autism actually was a biological disorder. Devoted to reworking the public impression of autism, he later founded the Autism Society of America, where parents were able to collectively voice the realities of autism and speak out against the Refrigerator Mother Theory.
Treatment of Autism
The first attempt to treat autism was actually a simple dietary change. For a brief blip of time, autism was thought to be caused by what you ate, especially if you had a diet high in gluten. Treatment quickly surpassed the dietary changes recommended in the 20s to something a little more severe.
In the 1930s, electroshock was used to correct antisocial or self-destructive behavior. In the most jarring description of this practice, an autistic child was repeatedly shocked in order to train them to hug their parents. Desperate parents lined up anxiously for this kind of ‘treatment.’
Of course, Bettleheim offered his own solution to treating autism. He believed neglectful parenting resulted in the behaviors commonly displayed in autistic children.The obvious solution was to remove autistic children from their families. He headed the University of Chicago’s Orthogenic School for Disturbed Children which performed these “Parentectomies.”
Not all schools for autistic children were tragically unsupported by any objective understanding. In 1965, the Sybil Elgar School opened to educate autistic children in a time when most considered them “un-educable.” The school used a highly structured approach with simple, clear instructions that Sybil found helpful with her own child. There were reported improvements in behavior, comprehension, and language abilities, and the success of the school spurred the opening of other similar institutions over the next decade. Others looked to drugs for a cure. Because autism was thought to be a personality disorder, drugs were used to alter a person’s perceptive state. The drug of choice? LSD. While patients were observed to be happier overall after being given a dose of the drug, the practice was highly criticized and even characterized as abusive. (A follow up of modern day approaches and thinking regarding autism will be coming soon.)