Learning Disability Today
Supporting professionals working in learning disability and autism services

“I don’t ‘have autism’, I am autistic”

By its very nature, the language we use is how we self-advocate, communicate, and relate to each other – it helps us to distinguish ourselves from our peers, and navigate our relationships. There’s an ongoing discourse about the language surrounding neurodivergence, offering up an opportunity to interrogate a difference of opinion felt in both the autism community, and the autistic community.

What’s the difference between the autism community and the autistic community?

The autism community is made up of caregivers, parents, colleagues, and friends of autistic people. They have an interest in the wellbeing of the autistic people around them, but crucially, they do not have lived experience of being autistic. On the other hand, the autistic community is made up of people who occupy that identity, either through formal or self-diagnosis.

Identity-first vs person-first language

In the context of autism, identity-first language is understood as describing someone as “being autistic”, as opposed to person-first language which would read as “a person with autism”. Even within minority communities, there’s a difference of opinion about how we describe ourselves or like to be described by others. The labels we attribute to our diagnoses, and more broadly, identities, speaks to how we relate to the conditions that have an impact on our lives. Largely, there is a divide between the two groups when it comes to discussing the use of language surrounding autism, with autistic communities generally preferring identity-first language, and caregivers and professionals leaning towards person-first language.

Why do some people use person-first language?

Anecdotally, those using person-first language suggest that placing the person before their diagnosis allows for those people to be understood as individuals in their own right before they’re understood as being neurodivergent. There’s an opportunity to interrogate this idea in the context of other identities – if we consider other inherent parts of identity like sexual orientation, race, nationality or religion in that same way, it would feel unnatural to say “person with bisexuality”, in place of a “bisexual person”. We have specific terminology designed to respect and honour intrinsic characteristics, conditions, and identities, and it’s important to use them appropriately.

Can person-first language ever be a good thing?

As autistic advocate Lydia X. Z. Brown asserted, person-first language had revolutionary origins that have been lost in most modern discourse. Person-first language often has the best intentions, and in the right context, works well. When considering addiction, you might describe someone as “a person with a substance use disorder”, in place of more stigmatising terminology, such as “addict”. Both approaches have well-meaning roots in empowerment and advocacy, but as Brown suggests, person-first language is often “co-opted by non-disabled, non-autistic (aka “allistic”) people”, making decisions about the language used to describe others, without being informed by their lived experiences.

What do the numbers say?

In 2022, a poll of close to 7,500 autistic people (including non-speaking autistic people) showed that 76% of those surveyed wanted to only be referred to as an “autistic person”. In that same survey, just 3.9% aligned themselves with being described only as a “person with autism”, with close to 15% opting for both to be used interchangeably (with the remainder choosing not to answer). These statistics speak to an increasing desire for recognising autism as a positive part of identity, and something autistic people don’t want to be distanced from. It’s part and parcel of our existence – everything we do is informed by being neurodivergent, and that’s not a bad thing.

In terms of my own neurodivergence and mental wellbeing, I describe myself as an autistic person who experiences other mental health conditions. It’s a two-parter, a mismatch of identity-meets-person-first language, and for good reason. Being autistic is my identity – it’s enduring, permanent, and can’t be taken away, but the mental health conditions and disorders I experience are something I can recover from. In a previous piece exploring my experience of OCD and autism, I explain how person-first language helps me to distinguish between neurodiversity-affirming support, and clinically informed treatment. Both are necessary, and often intertwine, but they’re ultimately very different parts of me and my progress.

Why would we want to distance ourselves from being “autistic”?

There’s a history attached to the terminology surrounding autism. It’s a complex condition, and one that often leads to prejudice, discrimination, and in some cases, abuse. When used incorrectly or inappropriately, “autistic” becomes a loaded and derogatory word, used as an ableist insult and slur. A diagnosis is not an adjective, and being seen (and supported) as an autistic person is a hard fought battle for acknowledgement, particularly for further marginalised groups that are routinely overlooked and underdiagnosed.

The reality is, being autistic comes with a whole host of positive attributes. It’s an identity as varied and diverse as any other group, and should be celebrated as such. When person-first language is assumed, it erases this positivity, semantically distancing us from being autistic on the grounds that it’s something we shouldn’t want to be.

How can I use the correct language?

As terminology shifts and changes, so does our practice and preferences. Here are some suggestions from an #actuallyautistic person who favours identity-first language.

  • Listen to the statistics and assume identity-first. Over 76% of autistic people surveyed prefer only being described as an “autistic person” instead of “person with autism”. If in doubt, go with the majority, but be aware of the remaining 34% that won’t necessarily agree.
  • Learn, read, and educate yourself on the legacy of identity-first language. Autistic activist Jim Sinclair wrote about their dislike for “person-first” language in 1999. Explore the past history of neurodivergence, and help to support a future of identity affirming and autistic-led language.
  • Be sensitive. It’s not always appropriate to talk about someone’s neurodivergent identity. If it’s an important part of the conversation and you’re unsure what to opt for, ask for their preference. Referring to a general guide or a blanket policy only goes so far – we all have different thoughts, feelings, and opinions about the language used to describe us.
  • Respect difference of opinion in autistic communities. Each and every one of us will either resonate with one, opt for both, settle with neither, or remain indifferent, and that’s fine. We don’t have to agree.
  • Don’t assume that autistic people want to be distanced from being autistic. Neurodivergence isn’t a bad thing – assuming we don’t want to identify with it suggests that there’s something to be ashamed of. Celebrate us!

Mette is a writer, collector, and curator working at the junction between print, audio, and interdisciplinary projects. Receiving an autism diagnosis at age 21, she has a vested interest in representation and accessibility.

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