Seeking Meaning: How history shapes our understanding of autism

As an autistic person who has experienced both acceptance and ostracizing for being different, the history of autism fascinates me. And there is a detailed history as well; one of misunderstanding, revolutionary thinking and activism, which has influenced how we see autism today.

That might sound strange. Surely most of our understanding of autism should come through analysis of behaviour and what autistic people have to say about thier experiences? And your not wrong about that, but one analysis will be markedly different from the other.

Issue being, a lot of the debate up to this point has focussed on how autisitc people express themselves vs. how others have decided to define us. Its the same with a lot of history. I have inevitably reached judgements about the theories and individuals which come to shape our understanding of autism today, but none of them are here to speak for themselves. Keep that in mind while your reading this.

The most egregious abridgement is lumping everything prior to the redefining of autism which occurred around the 1970s, as being an amorphous category known as “the early years”, and everything since as being closer to the ways in which autism gets seen today. I encourage you to fill in the blanks by looking at this rich and intriguing history yourself.

The Early years…

The first known use of ‘autistic’ was in 1910 by psychiatrist Eugene Bluer. He was studying schizophrenia patients but noticed that some of them seemed ‘withdrawn’ from the world around them.

It wasn’t until 1926 that the definition of autism was cleaved away from schizophrenia. Soviet neurologist Grunya Sukhareva used the term “autistic psychopathy”. For this reason, autism does not generally get viewed as a mental illness anymore. Despite that, given the lack of info distinguishing neurological and psychiatric disorders, I’m not strict about the terminology, insofar far as we can provide help for everyone and respect individual struggles.

For years, autism was classed as a subgroup, which meant that those who didn’t fit Bluers original mold would have gone undiagnosed. Psychologist Leo Kanner originally followed that model but changed his mind after he met individuals who did not display schizophrenia but did display what he recognized as autistic traits.

While Kanner was able to identify children who had been lumped into the broad category of ‘imbecility’ and give thier condition a name, his studies stopped at children. To make matters worse, he blamed mothers. To him, the mother of the autistic child was a cold one whose behaviour makes the child become an unfeeling robot. The ‘refrigerator mother theory’ took hold in the 1960s, and the medical establishment set expectations for mothers, whereby they were made to defend thier parenting to psychiatrists hooked on Freudian ideology. Popularizing the theory was Bruno Bettelheim of the university of Chicago, who compared these ‘horrors at home’ to his experience in Nazi concentration camps. It was not until his death in 1990 that he was revealed as a fraud: he had no expertise in psychology, never testing one theory.

Contrast this with the theories published by Hans Asperger. In the past he’s been cast as a heroic figure who opposed the Nazis. Though, new research suggests he was complicit with sending children to Spiegelgrund, which was set up as a collecting point for children who failed to conform to the regime’s criteria of “worthy to live”. Still, his research is undeniably influential. In 1938 he gave a public lecture which tried to frame autisitc children in terms of potential rather than defects. Asperger called some of these children “little professors,” arguing that thier autism was detrimental only when their environment was not suitable. However positive this sounds though, embedded within this was the concept of “Heilpädagogik” – therapeutic pedagogy – which promoted the popular idea among Nazi leaders, that in certain cases, people with autism made excellent soldiers. Asperger also wrote about the need to “carry out restrictive measures” against patients deemed to be burdens “out of a sense of great responsibility” towards the German race.

“He was responsible for depriving of their liberty many children whom he deemed incapable of existing outside institutions” 

Herwig Czech, Molecular Autism

These present two competing visions of autism. One took autism away from the association with mental illness, bringing the definition closer to our vision of the syndrome today, but assigned blame in the process. The other began to introduce the idea of autism as a spectrum, yet condemned as many lives as were saved. This next section will look at how those ideas have changed, and continued to have lasting impact.

Reimagining Autism

“Nature never draws a line without smudging it.” 

Lorna Wing

The Diagnostic and statistical manual of mental disorders is vital. After being rewritten to account for the limited view of autism presented in DSMIII, it presented a modern definition courtesy of researchers Lorna Wing, Lynn Waterhouse and Bryan Siegel.

The work of Wing is paticulary important. She was curious about the people who met some criteria but went undiagnosed. In 1962, she founded the National Autistic Society. Through her work at the Medical Research centre she introduced the idea of the autism spectrum, whereby different people can experience autism in different ways. She said that it was very difficult and not all that useful to draw neat boundaries around some symptoms, so she incorporated into the DSM the ‘triad of impairments’ – broad difficulties in communication, interaction and social imagination, which help to define someone as being on the spectrum. While Kanner had dominated ‘the view’ of autism up to this point, in 1981 Lorna published a paper on the work of Hans Asperger which introduced the term Asperger’s syndrome. Despite my reservations about the man, this needed to be done to foster a more positive view of autism than that provided by the Freudian school of thought. Autism would now be viewed as a lifelong condition.

This work did introduce the ‘functioning’ labels, and while I don’t like the image those terms paint, they were a step up from the overly specific definition. In the late 1980s, the film ‘Rain Man’ came out, and while Dustin Hoffman’s character is portrayed as the ‘savant’ stereotype, in terms of representations of autism in pop culture, this was a turning point. Being born in 1994, I remember seeking great comfort from the fact that my autism made me ‘different’. I was very lucky to be born after a great social upheaval in how people thought about autism. This was a forward thinking time for studies of the spectrum…then Andrew Wakefield came along.

With so much talk on autism, panic about the causes ensued. Everything from polluted water, to cellphones got blamed. The U.K. Department of Education confirmed that the increase in cases was due to better recognition, but rumors continued to grow. Wakefield published his now infamous article claiming that vaccines cause autism. Not unlike Bruno, he was not qualified to speak on this issue – his expertise was in viruses. Regardless, his work was presented to the press and moral panic ensued. However, research soon came out that debunked these conspiratorial claims. His medical license was revoked, and eventually the entire paper was retracted and deemed a fraud. Despite evidence of Wakefield’s dishonesty and claims of child abuse in his research, he peddles the conspiracy to this day, alongside a dangerous minority of anti vaxxers.

The most significant development since then has been the removing of the term Asperger syndrome as an official diagnoses to be replaced with the more general Autism Spectrum Disorder. Not everyone agrees with me on this but I view this as a positive. Ask 100 different people with Asperger’s syndrome how they experience thier diagnoses, and you’ll get 100 different answers. For this reason, ASD is more consistent with the knowledge we have about the triad of impairments and the spectrum.

An Atypical Perspective…

Autism may not be a mental illness, but we should avoid stigma: In a sense its good that we now have a sperate term for autism which distinguishes it from mental illness, as that has helped us to move away from narrow perspectives. I personally don’t consider my autism to be a mental disorder, but understanding my mental health is a big part of my life. In separating the two we should be making sure to avoid sending out a message of ‘we are not you’ and creating a stigma towards either group. Similarly, in brining together services, we should be trying to make sure everyone feels comfortable in thier identities and respecting how different people experience thier emotional, cognitive or behavioral struggles.

Our historical figures are fraught but influential: Looking at the legacies of figures like Bluer, Kanner, Asperger and Wing, we see a completely different set of personalities. While I see some worthy of championing and others very deserving of skepticism, I would not want to ignore the influence that a figure like Asperger had in fostering a strangely progressive view of autism, even if he was far from forward thinking in other respects. While I think Wings contributions certainly make up for her mistakes, there are some things she overlooked, like the potential damage that terms like ‘low functioning’ can do. As someone on the spectrum, I have particularly struggled with nuance in the past, even if the history of my diagnoses is fraught with those specifics.

Autisms causes are not as important as its existence: While I am eternally fascinated by the science behind what causes autism, if all we ever see are a lot of theories, then I will be content with that. With discussion of its causes, the chief risk is that we end up medicalizing the condition to such an extent that we stigmatize diagnoses, forgetting about its positive aspects. Obviously, ‘refrigerator mothers’ and ‘vaccines cause autism’ show extreme examples of that, and they are the ones that have made headlines. I’m very aware that there is better origin research out there. Ultimately though, I view chasing a cause as less important than understanding the spectrum and finding out how we can improve society, so that autism is welcomed in all corners.

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