This year we’ve heard a lot about representation and why it matters — think Black Lives Matter movement. Campaigners such as Samantha Renke regularly write about the impact of seeing yourself. However, what is not always mentioned is Autism and Autistic people, like myself. True, we are regularly written about and even put into films and TV dramas, but these depictions are largely based on stereotypes or a minute fraction of us. The typical story told is that of the parent and how ‘hard’ it is to look after a ‘challenging’ child. Whereas the lived experience of an autistic person is so often not covered. The outrage over Sia’s film Music was reduced to her being ‘cancelled’ by ‘activists’. Court reports sometimes state that a defendant pleads ‘not guilty’ on the grounds that their autism means they have diminished responsibility — despite it being a neurological impairment, not a mental condition. All these fallacies have an indirect impact on the way autistic people are viewed and understood.

Words matter

The IPSO Code Of Conduct, for example, has a clause about how to cover suicide, in line with Samaritan guidelines. A newspaper investigation pointed to Donald Trump’s racist comments about Covid-19 being the fault of China as a leading cause in the direct rise in hate crimes in the United States. Research by the campaigning group Hacked Off detailed that words matter in a guest blog post by Jodie Jackson, author of You Are What You Read.

Bottom line — autistic representation is incredibly limited. Can you name a cult classic film that does not rely on stereotypes when dealing with an autistic person? Rain Man (remember Dustin Hoffman’s immersion into mental abstraction?) is still one of the most popular films when it comes to autism. And yet, the person who inspired it was not actually autistic. ‘Atypical‘, a 2017 Netflix series, came under fire for not having an autistic actor in the lead role and for the autistic hallmarks often being ‘the butt of the joke’.

Why we need a full spectrum of autistic representation

Karl Knights is an autistic writer who also has ADHD and Cerebral Palsy. His work frequently features in The Guardian. When asked if he had ever encountered misrepresentation that impeded him — i.e., the assumption: ‘You can’t be autistic! You’re awful at Maths and nothing like Rain Man!’ — and how he would like to see representation improve, he replied:

‘In short, yes, absolutely.

Rain Man is more than thirty years old now, and the film’s influence on subsequent autistic representation and on autistic people’s lives has been disastrous.

‘Partly because the representation has been so deeply one note, people really do expect you to be a Dustin Hoffman clone. Things are shifting, but only slightly.

‘I was really cheered to see that in Everything’s Going to be Okay, two autistic actors play queer autistic people, who stim and are allowed to simply exist as autistic people on screen.

‘The characters aren’t there to be a lesson for a main character, or they’re not a plot point.

‘They just are, and that’s deeply refreshing. But representation has a long, long way to go.

‘It’s important to note that autistic people often aren’t just autistic, they’re LGBT+, or poor, or people of colour. As yet, the sheer intersectionality of the autistic spectrum simply isn’t on the screen at all (though, autistic people of colour are better suited to assess representation than I am!)’.

being autistic is a hidden disability

My own story and others’

Poor representation has been a cause in preventing people from getting a diagnosis for Autism Spectrum Disorder. It also means that people can wait years before they receive a conclusive answer. In particular, autistic women are likely to be diagnosed far later in life. This is down to a variety of reasons, such as poor diagnostic criteria not picking women up (due to it being written to diagnose men), ‘masking’, and the stereotypes.

I was lucky to be diagnosed two months shy of turning sixteen — despite having been regularly tested throughout my childhood for conditions such as Dyspraxia. It took three and a half years from the point of referral to be diagnosed as an autistic female, and I am privileged in that respect. Because I was female, ‘of course’ I could not be autistic! I was just ‘shy’, ‘sensitive’. Gender should not matter when diagnosing autistic people because it disproportionately blocks women from being diagnosed. A diagnosis later on also has a huge and often negative impact.

Charlotte Colombo is a journalist staying at the University of London. She is also the training and opportunities officer for SPA Journalism. She said:

‘I used to be flattered when people told me “you don’t look autistic”, and this pushed me to work harder and harder to mask and repress all of my characteristics in order to “blend in”, because if you’re told that you’re an outsider your whole life you will jump at the chance of being able to give a convincing impression of someone who isn’t.

‘The result of this excessive masking wasn’t good for me. The effort it took was exhausting, and this was exacerbated by a feeling of self-consciousness that I wasn’t blending in hard enough, and it made me feel like my value as a person was contingent in being able to give a convincing performance of someone neurotypical’.

On their website, The National Autistic Society says:

‘Autistic people often feel the need to hide or mask their autistic traits in public, for example by suppressing the urge to stim. It can be important to factor times into your child’s day for things like stimming, somewhere they feel comfortable and able to do so’.

In some circumstances, masking can have an unhealthy impact, especially when it comes to mental health. It is not a compliment to tell someone that they don’t ‘look like’ they are autistic — autism doesn’t have a specific look. It’s also invalidating. Charlotte describes feeling the need to fit in more, but a more nuanced representation of a fuller spectrum would remove the need for such comments in the first place.

I myself identified with this feeling, especially just after diagnosis. Being able to verbally articulate my thoughts apparently meant that I had no challenges. I lost friends over the ‘scary Autism’, despite it just being a descriptor of my condition. I have never felt ‘age appropriate’ by interests and in my teens would have been reading about the US presidents while my peers talked about hair, make up, boy bands and boys. It felt like my value to those around me was based upon this facade. Because I could work at being ‘normal’ and I wasn’t like Rain Man, or someone who had ‘shot up’ a school, I became the girl ‘faking’ my challenges, apparently.

It’s important to note that autistic people often aren’t just autistic, they’re LGBT+, or poor, or people of colour

Hester Grainger is the co-founder of Perfectly Autistic; her husband and two children are on the spectrum. She said:

‘When I tell people that my children are autistic, I’ve lost count of the amount of times that they ask what my children’s special talents are.

‘I think they expect them to be an amazing musician without having had any lessons, or being able to sketch something in immense detail.

‘People often look surprised when I tell them that my husband is autistic too. As if you can’t be autistic AND married. They are even more surprised when I say he’s romantic and thoughtful, which is when they often try and hide their rather shocked face!

‘When it comes to representation, it must be hard portraying autistic characters, as being autistic is a hidden disability and each person is so different.

‘However, I would love to see more representation of autistic women on screen and also children that aren’t non-verbal or portrayed as violent or with a strong temper. Although I’m just grateful for any autistic characters on screen, to ensure the conversation about autism continues to grow’.

A significant proportion of the global population are neurodiverse; that is, each with their own unique set of challenges and hallmarks when it comes to behaviour and patterns of thought. Representation in newspapers, films, interviews, podcasts and just about anywhere else really matters. It allows a significant proportion of the population to succeed better at not having to be combative and adaptive, but to enjoy life as themselves. People like me should not have to prove that we are capable of learning or loving. A spectrum is a spectrum. We are all different, after all.