It happened in a recent therapy session. I was telling my psychologist that my recent autism diagnosis is both validating and damning. “Now that I know why I’m like this,” I said. “I know I can’t change. No matter how hard I try, I’ll never be normal. I’ll never fit in.”
My kind and empathetic therapist listened with her brow furrowed, and then suggested I take a step back and distance myself from my autism. “You might want to tell yourself that autism comes to visit you sometimes, just like your anxiety and depression but that it doesn’t define you,” she offered.
I nodded dutifully but for the first time in over two years, I left our session feeling unheard, disappointed, and confused.
How am I meant to take a step back from my autism?
I can’t, I realised. I cannot separate myself from my autism because as a neurological difference, it is inherent to everything I do, say, and think. There aren’t days where my autism is worse than others, like my depression. There is no grounding exercise that can reduce my autism, like my anxiety.
Being autistic is the cornerstone of my identity, relationships, and day-to-day life - not something I can ignore or work around like a bad headache.
It turns out the vast majority of autistic people feel the same way. In 2020, the Organisation for Autism Research (OAR) conducted a survey of over 1,000 respondents. Of the more than 800 self-advocates who participated, almost 89 per cent indicated a preference for identity-first language such as “autistic” or “autistic person”.
It’s important to note that this preference for identity-first language within the autism community is relatively new. Person-first language (like “person with autism”) has been dominant within the community for many years. Recently, however, there has been a growing push, most notably among self-advocates, to use identity-first language.
As one respondent to the 2020 OAR survey explained: “My autism is not an accessory that I can set aside. It is not something external that has latched onto me. It is not an illness or disease I have ‘caught’. It is a fundamental, inseparable part of me and who I am.”
The long preferred person-first language was supposedly used to avoid the implication that a person was defined by their autism. In my own opinion, terms like “person with autism” – or worse, “person living with autism” (what, like a bad housemate?) – only further stigmatise autism as a separate thing, a medical diagnosis, or an acute condition to either overcome or “get over”. The implication is we shouldn’t want to be associated with our autism, and that there is something inherently wrong about being autistic.
To ask an autistic person to separate themself from their autism, especially in order to overcome its challenges, is like asking a deaf person to listen harder – the task itself is impossible, and to ask is ignorant at best and offensive at worst.
No wonder autistic people have increasingly called for acceptance of identity-first language. It’s also probably not a coincidence that this paradigm shift began with the turn of the new millennium, after the phrase “neurodiversity” was coined in a 1999 honours thesis by Judy Singer, who describes herself as “likely somewhere on the autism spectrum”.
Two decades later, it’s more important than ever that therapists, medical professionals, and the wider community understand how and why their words matter. Neurodiversity, like autism, should be celebrated - not pathologised and apologised for. And while the identity-first conversation began in the autism community, it’s important that it doesn’t end here.
Elena Filipczyk
Elena Filipczyk writes about animals, autism and chronic illness. She is a rollerskating and music-obsessed vegan and intersectional feminist, who is autistic and has ADHD.