By Rebecca Ellis

04 February 2021 - 15:48

Large crowd of people crossing a road in New York City
'Ask autistic people what being autistic means to them. Ask what you can do to help them, or what you should understand.' ©

Christopher Burns used under licence and adapted from the original

Rebecca Ellis, an autistic PhD researcher in autism care pathways, and a science communicator, shares current thinking on autism.

Autism is a neurodevelopmental condition – our brains are wired differently 

According to the current diagnostic criteria, Autism Spectrum Disorder (ASD) is characterised by:

  • difficulties in social interactions and communication
  • repetitive and restricted behaviours.

Our understanding of autism has changed considerably over time. Often, new information is not circulated well enough. 

A lack of wide-reaching science communication, and limited representation of autistic people leads to frequent misunderstandings about its nature.

The neurodiversity movement in the 1990s influenced how autistic people wish to be referred to  

Many autistic people now prefer identity-first language, referring to ourselves as an ‘autistic person’. 

In person-first language, I am a ‘person with autism’. This was once considered the most respectful option, since a person is a person first and foremost. But autism does not take away from being a person. Autistic people, such as myself, see autism as integral to who we are.

For example, we say a ‘person with cancer’ or ‘someone with the flu’ because this extra element is external to their identity. It isn't usually a lifelong part of a person and often has a negative connotation. Identity-first language seeks to remove the negative connotation.

If you’re not cisgender, male and white you may have a barrier to an autism diagnosis

Autism research participants were historically white, straight, cisgender men. This has led to the development of male-biased diagnostic criteria and diagnostic tools.

Because of this, professionals are more likely to consider autism as a diagnosis for men. There is very little research on intersectionality within autism.  

It also doesn't help that autistic characters in popular culture give a stereotypical idea of what autism looks like. These include Sheldon in the TV programme The Big Bang Theory, Raymond Babbitt in Rain Man, and Christopher in The Curious Incident of the Dog in the Night-time.

The character of Sheldon Cooper has advocates, including autistic advocates, but I'm not one of them. The Big Bang Theory creators have never confirmed that Sheldon Cooper is autistic. They are not providing autistic representation through this character. The autistic traits of this character are used as comedic devices.

‘Masking’ hides autistic behaviours in favour of more socially acceptable ones   

‘Masking’ is a form of reputation management. It requires flexibility and understanding of other people’s intentions.   

To ‘mask’ effectively, a person must understand how they are perceived by another. Then they must decide the ‘best’ behavioural choices in a situation using environmental and social cues.

These choices could include making eye contact, engaging in small talk, spending time in an area that is too bright, or too loud, or copying the behaviour of others for social approval.

Ongoing masking creates a build-up of stress which can lead to meltdowns and burnout.

As an example, a child may mask during the school day in order to make and maintain friendships, or to avoid being told off. They then release these feelings when they are somewhere safe. Quiet children in classrooms often go undiagnosed.

Illustration of person wearing a mask with hand up to their face
'Not being true to who you are causes a personal disconnection. This disconnection causes stress, which can manifest as increased anxiety, depression and physical pain.' ©

Rebecca Ellis, used with permission

Autistic people who can mask have been called ‘high functioning'; a lot of autistic people do not like this phrase  

The idea that someone is 'high functioning' diminishes the difficulties they may be facing. Difficulties are not always visible, especially if an autistic person is masking.

Masking comes at a cost as it is mentally exhausting and can contribute to mental health difficulties over time.   

Carl Rogers, founder of Person-Centred Therapy, believed that acting against your true self can lead to psychological difficulties. I believe that includes masking.

Not being true to who you are causes a personal disconnection. This disconnection causes stress. Stress can manifest as increased anxiety, depression and physical pain. Research on masking’s effectiveness and its long-term health implications has only just begun.

High and low functioning terms also suggest that autism is a scale rather than a spectrum. However, autistic characteristics are not linear. Much depends on our experiences and environment.  

A diagnosis is a privilege that not everyone can afford  

The pathway to diagnosis is a long one for many and on receiving a diagnosis. We are not guaranteed support.

Diagnosis is expensive in many countries. It requires time and a knowledge of the diagnostic pathway which a lot of people don't have. This is not through any fault of the autistic people and their families. 

Many healthcare systems do not make this process clear.

People often describe their diagnostic experience as a 'fight'. Some people do not have the confidence or support networks to undertake what can be an emotionally-draining process.

If a person tells you they are autistic, do not assume anything

Even if you already know another autistic person. Even if you are autistic yourself.

Ask autistic people what being autistic means to them. Ask what you can do to help them, or what you should understand.

Accept them, listen to them and respect their experiences.  

Rebecca is a PhD researcher in autism care pathways at Swansea University and was the UK winner and International runner up at FameLab International 2020, an international science communication competition owned by Cheltenham Science Festival and delivered globally by the British Council. 

FameLab UK 2021 is open for registrations throughout February and March 2021.

Find Rebecca on Twitter @Bex_does_work.

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