Journalism for Social Change Project: Autism and the spectrum of misinformation

This year sees the second year of GO Justice’s Journalism for Social Change Project. The initiative was designed to support students interested in social justice to develop their journalistic writing skills and create a finished piece of writing for publication.  

A small group of students were selected to work with award-winning freelance journalist Eve Livingston, to learn writing techniques and develop story ideas before working on a draft for publication.  

 We are delighted to publish here the finished articles from our participating students.  Our first piece of writing is by student Katie Maguire on the topic of ‘Autism and the spectrum of misinformation’. 

Autism seems to be the word of the moment. From Reform UK’s Richard Tice’s recent diatribe about a “crisis of overdiagnosis”, to men on dating apps looking for ‘slightly autistic girlfriends’ and Donald Trump’s infamous - and wholly debunked - rant about the so-called ‘dangers’ of paracetamol consumption in pregnancy, society has never discussed it more. But while public awareness is higher than ever, this has not materialised in positive changes for autistic people. In fact, misconceptions span a wide spectrum of their own, with misinformation about autism stretching far beyond the medical field into society at large. 

My own personal proximity to those with autism undoubtedly means I am more switched-on to misconceptions and negative representations than most - multiple of my close family members are autistic, and I have seen the vast differences in how autism can manifest. One family member has followed the same route as me, attending the same primary school, secondary school, and now university.  Another is non-verbal, attended ‘special schools’, which provide specialised education and support for those with complex additional support needs, and requires round-the-clock care.   

One of the misconceptions I see most often is a tendency to talk about the autism spectrum as if it were a linear sliding scale which can be used to distinguish ‘severity’ - but one person is not ‘more’ autistic than another. The term ‘high-functioning’ is frequently used to refer to neurodivergent people who are thought to be less negatively affected by their diagnosis. If you were asked whether Sir Isaac Newton, who many experts now believe to have been on the autism spectrum, was ‘high functioning,’ your immediate answer might be yes. But evidence shows he often needed maids to ensure he ate, washed, and changed his clothes. These kinds of labels are therefore highly subjective and can do more harm than good. A person’s intellectual capacity has no bearing on their experience of neurodivergence.    

Assessments on a neurodivergent person’s ability to function also often fail to recognise the effort and effect of ‘masking,’ a term used to describe the performance of ‘normality’ that neurodivergent can feel obliged to put on in social interactions. Often, neurodivergent people can mimic the behaviours society expects of us in social situations. So while an autistic person may appear to be ‘high-functioning’, this perception is often surface level and doesn’t account for masking - which can also be draining and detrimental to their wellbeing.   

Importantly, autism is not a spectrum which we are all on.  Common traits such as difficulties with loud noises, a need for routine, and struggles with social situations are linked to neurodivergence. But they are not indicative of it. Hating loud noises does not mean you are ’10% autistic’ - whatever that might mean - you just hate loud noises. For a neurodivergent person, these traits can become relevant to diagnosis if they are part of a wider set of traits and circumstances.  

Over the last twenty years, professionals have stopped diagnosing people with Asperger’s Syndrome, moving away from the problematic links to Hans Asperger, a physician who participated in the Nazi Euthanasia Program which killed children with disabilities, and from the ‘functioning’ labels which can be unhelpful. Those who would have previously been diagnosed with Aspergers today would be diagnosed with autism. The removal of the term Aspergers was undoubtedly something to be celebrated, but in my experience the broadening of the autism diagnosis has also contributed to widespread confusion about autism: it can be difficult to understand how two completely different individuals with vastly different abilities and needs can be categorised under the same term. 

This helps to explain why ‘severity’ is such an inadequate term. My non-verbal family member might quickly be categorised by others as ‘severely autistic,” but he does not particularly struggle with loud noises or crowded areas, and he doesn’t need to follow an established routine. Meanwhile, my other family member who attended mainstream schools does struggle with loud noises, dislikes crowded environments, and has difficulty understanding social conventions. Both lead entirely different lives and face an entirely distinct set of circumstances. No two neurodivergent people are the same. 

I find that conversations about autism are typically couched in negative language, as though autism has only negative implications for a person’s life. In my experience, those with autism can certainly face challenges - but their lives are not without joy, laughter, or connection.  Neurodivergence is part of the natural diversity of humanity; without autistic people, the human race would not have advanced and developed in the way it has. To frame autism as a wholly negative experience is to rewrite the personal experience of so many neurodivergent people.   

And our desire for everything to be compacted easily into one neat and tidy box not only limits our understanding, but also contributes to widespread misinformation. My own experiences with misinformation are vast. I have listened as well-meaning friends use terms such as ‘high-functioning’.  I have seen people I know use ‘puzzle’ imagery, suggesting that those with autism have a piece missing, in posts on Facebook. I’ve even had an upsetting encounter with a disgraced GP who had been fired for prescribing a ‘cure’ for autism which contained bleach. Some of these examples are more extreme than others, but it is fair to say that most people, knowingly or unknowingly, hold beliefs about autism which are inaccurate and negatively contribute to the lives and experiences of those with autism. 

For example, a recent trend has seen straight men on dating apps seeking out a ‘slightly autistic girlfriend’.  Here, autism becomes a place holder for ‘quirky’, with use of the word ‘slightly’ ensuring that the woman in question is still palatable and not too difficult or demanding.  To some people, this might seem like progress, but the reality is that only a very narrow conception of autism is deemed as socially acceptable.  The real and varied challenges that autistic people face are ignored, and in practice people are hesitant to put in the effort to understand those with neurodivergence, never mind provide the necessary accommodations which will be unique to each person.   

So whether it comes from dating apps or from the president of the United States of America, misinformation must be interrogated and corrected. Increased discussion and awareness of autism should be a positive thing, but if we do not challenge misinformation, we risk missing a crucial opportunity to enhance social acceptance.  I’ve seen first-hand how harmful misconceptions and stereotypes can be to autistic people - and how meaningful it is for people with autism to be truly included and accepted.  It’s time we challenged the spectrum of autism misinformation across all of society. 

~ Katie Maguire