All the strange ideas we have about autism, from the plausible to the bizarre, all started somewhere, but where?
This article is based on the script of the video of the same name uploaded in March 2022
You can watch the video by clicking on any of the images in the body of text.
As an autistic advocate I spend a lot of time dispelling myths. The scale of misinformation in circulation about autism and autistic people both boggles the mind and directly impacts the course of autistic lives.
But where do these strange ideas come from?
And how do they start?
Autism isn’t a new thing. Since the dawn of humanity autistic people have been poking and prodding at the world around us and pushing the boundaries of knowledge. We’ve been innovators and inventors, prophets and priests, thinkers and theologians, but for every autist who made it into the history books, thousands more were kicked to the gutters.
We were heretics, dissidents, seditionists, witches, deviants and zealots who were pursued and punished for our willingness to question the established order. Others were written off as simpletons, feeble minded, mute or hysterical.
All that started to change in the 1940s when Leo Kanner’s work on autism hit the medical community. In a few short years the most disadvantaged of us were given a new medical designation. The very first autism myths started the moment our common differences were given a name. Even as Kanner was writing his seminal paper, the seeds of ideas that would hinder, frustrate and even ruin future lives were being sown.
Kanner’s research concerned only children, and primarily children who appeared to be extremely disabled. People thought of his work as revolutionary and everything that came after was built on his foundations. Many of the conclusions made by Kanner have since been disproved or reconsidered once their flaws became apparent, but the core of his theories still persists in autism myths we’re fighting to this day.
Even today we see contemporary academics given internationally recognised awards and titles for their “services to autism”, despite their theories being discredited and demonstrated to have caused harm. Their perceived credibility has helped their damaging speculation enter the common consciousness as if it was fact.
Between the 1940s and the 1990s autism was a rare diagnosis, largely overlooked in the media. On an occasional news programme or documentary it would be portrayed as an oddity or a human interest story, and always from the point of view of the parents. The narrative was of the difficulties those poor parents endured in dealing with such baffling, unreachable kids. Even stories of talent or achievement were set against a backdrop of the parent’s struggle to cope.
In the early 1990s two developments completely changed the landscape for autistic people.
In 1992 (ICD) and ‘94 (DSM) the Autism Spectrum was added to the diagnostic manuals.
The spectrum acknowledged facts about autism that Kanner was nowhere near identifying in his early work. It had finally been recognised that being autistic was far more commonplace than originally thought and the ways in which it impacted on people’s lives varied massively across the board.
The second was the invention of the World Wide Web. Not only did we have new knowledge but an easy way to pass it on to the rest of the connected world. I’ve talked before about how important the internet has been and still is to the formation and maintenance of a productive and supportive autistic community, but it’s worked against us too.
For all that the internet allowed autistic people to connect, share and learn about our common experiences, it also allowed those who traffic in lies and misinformation to proliferate too. Those same parents who had been the subject of tragic stories on the nightly news now had a way of telling their stories directly to others. Before long a whole cottage industry of parent bloggers and influencers writing about their autistic children was thriving.
Some were genuinely in difficult circumstances. Nobody pretends that bringing up an autistic kid doesn’t have it’s challenges. The precautions and accommodations parents must put in place can be quite different than they would for an NT child and even now the supports that parents can access are woefully inadequate. Many of them were people at their wit’s end, shouting into the void for help, but not all of them.
Some saw an opportunity to make money and a name for themselves on the back of their child’s differences. They in turn became fodder for lazy journalism in the many online spaces that sprung up thanks to the advertising money that flowed into this new media stream. Those pages needed to be filled and bizarre stories of weird kids with unusual behaviours filled up plenty of dead space.
Before you know it articles like “10 things YOU need to know about autism” or “How to know if YOUR child is autistic” became commonplace.
More and more troublesome behaviours and medical problems started to be bundled together and labelled as autism. If an autistic child was epileptic, had learning difficulties or suffered from anxiety it was portrayed as all being symptomatic of autism rather than separated as individual conditions or reaction to trauma. On top of the damage already done by the scientific and medical professions, poor, sensationalist journalism and self-serving media wannabes fuelled the fire with a long list of burdensome conditions and behaviours which had little or no connection to autism.
Adding to this miasma of scientific and media poison are the modern snake-oil merchants who claim to hold the keys to “fixing” autism. Their very existence rests on misinformation so they do everything in their power to ensure it persists. They will even add to it if they think it will help fill their coffers.
From ABA practitioners relying on the finance of governments, charities and insurance companies to the criminals who peddle industrial chemicals as cure to desperate, cash-strapped parents, the continued portrayal of autism as a catastrophic diagnosis that destroys families is essential to their survival.
Without doubt the best way to understand autistic life and experience is getting to know autistic people. No matter how well a neurotypical person may know their autistic child, sibling or friend, there are aspects of their thoughts and feelings they can never access without help. Even the most cooperative and eloquent child can find it difficult to explain themselves to the adults in their lives. When the child is autistic it can be even harder for them to connect and be understood.
Having autistic adults to hand to offer insight and advice into their autistic child’s inner world is a privilege any loving parent should jump at the chance of having, but it’s often ignored or shunned.
We can only speak for ourselves though, and that is where we run the risk of creating our own autism myths. It’s far from unusual for an autist to grow up relatively isolated, whether by choice or not.
Many of us have chosen more solitary lifestyles, not by preference, but to shield us from the worst excesses of cruelty and rejection. Anxiety and depression are frequent companions and PTSD from historical abuse is commonplace. Some of us, whether from abusive conditioning or shattered self-esteem have learned to believe some of the horrible myths we were told about ourselves and in doing so we risk harming others.
Others are victims of the illusions the world creates around us. As discussed in The Great Neurotypical Swindle – if we get fooled into believing the aspirational image of constant happiness, carefree life, prosperity, competence, close knit family and solid, supportive friendships as representative of normal, neurotypical life, then we will inevitably find ourselves lacking.
We might not realise that many difficulties and insecurities in our lives are actually shared by most people, including non-autistic people, so have little or nothing to do with our being autistic at all.
The only reason we think they are is because NT people don’t talk about them.
The biggest risk we run is in assuming that our experience of being autistic is the same as that of others.
Many of us are guilty of that when we first find out we’re autistic. We recognise some way in which we differ to most of the people we know and we assume it’s because we’re autistic when it may be nothing more than a quirk of our personalities or upbringing.
To understand autism it’s not enough just to be autistic, let alone be related to someone who is.
It gives you a decent head-start but the variety between autistic people is as wide as any other group within humanity.
There are certain differences in thought and feeling which separate us as being autistic, but how those shape our preferences, our opinions and beliefs or influence our behaviours and needs is determined by our childhoods, our environment, our financial security and much, much more.
If you want to learn about autism to better understand yourself or someone you care about you need to listen to multiple autistic voices and the great thing is that there are thousands of us out there writing, podcasting, making videos like this or engaging face to face.
We all offer our own perspectives on what we’ve learned both from our own experiences and those of others.
The more we talk, the more we learn and the closer we get to understanding just what defines us as autistic and how we can help each other survive and prosper.
The better we know ourselves, the more powerful our message becomes.
You can watch the video by clicking on any of the images in the body of text.
(c) Autistamatic 2021