We’ve got autism outside in

View from within: Autism should be understood by how it feels from the inside. Picture: Andrew Neel/Unsplash

Ever since autism was recognised as a condition, it’s been defined by the way it appears to and affects others, rather than by how it impacts us, as autistic people. And that can’t continue.

The official diagnostic criteria used in the UK (the World Health Organisation’s International Classification of Diseases, or ICD) say autism consists of an inability ‘to initiate and sustain reciprocal social interaction and social communication’, combined with ‘restricted, repetitive, and inflexible patterns of behaviour, interests or activities that are clearly atypical or excessive’.

The latest version of the criteria, the ICD-11, does make mention of our sensory sensitivities, but it’s still largely about how weird and bothersome we seem to the neurotypical majority.

Focussing so heavily on external appearance puts those whose autism profile is largely internal at high risk of being overlooked.

In a panel discussion about neurodivergent women and girls during last month’s Neurodiversity Celebration Week, Cathy Wassell, chief executive of charity Autistic Girls Network, pointed out, ‘An internal profile is, generally, what most girls and women have.’

We learn from an early age that to be liked, do well and stay safe, we need to conform to society’s expectations. So we do our best to speak and interact ‘normally’ and force ourselves not to flap, stim or have highly visible meltdowns in public.

But that doesn’t mean we’re not autistic or that we’re not suffering inside. As the network’s excellent white paper, Keeping it All Inside, explains, ‘When autistic young people who present internally go unrecognised, they are likely to be struggling with anxiety, depression and other mental health problems.’

Different, not broken

Keeping it All Inside quotes Holly Smale, author of the best-selling Geek Girl books, who says: ‘I spent nearly four decades believing I was “broken”, and being told that the different way I experienced the world was a result of something “wrong” inside me. It was only after my late autism diagnosis that I finally started making sense of not only my neurology, but of my past and who I actually am.’

For many of us, the hardest aspects of autism are the confusion, anxiety and exhaustion caused by having to operate in a world that doesn’t recognise, accept and accommodate our social and sensory differences. In other words, it’s society that disables us, not the condition itself.

According to research from University College London, there could be a staggering 1.2 million adults in England with undiagnosed autism. That’s 1.4 million across the UK as a whole.

The continuing focus on autism’s external presentation, and our so-called deficits, means many of them will continue to struggle, believing they’re broken, failing, not trying hard enough or not good enough, until their mental or physical health gives out, never realising it’s not them, but society, that’s at fault.