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.