Words Matter: The Importance of Identity First Language

"Amanda, lock your knee. Lock. Your. Knee. LOCK. YOUR. KNEE."

The yoga teacher's voice crescendoed.

This was probably the fourth or fifth time he corrected poor Amanda. Despite his tone, I was happy as can be. I kicked my right foot into the second set of dancer's pose and for the first time in ages, I felt light. Sure my ankle was bordering on buckling and it seemed like everyone but me knew the poses before they started. Nevertheless, with each deep breath, I felt like I could go a little deeper. I felt more present - more like myself.

As a droplet of sweat ran down the bridge of my nose and onto my mat, I resolved to use the pass I had purchased to the fullest.

Tap. Tap. Tap.

My focus and balance broke simultaneously.

The sensation on my shoulder was the instructor. "Amanda, I told you to lock your knee."

He had been talking to me.

I did my best to regain my footing and then mustered up the courage to barely say, "My name is Alana."

Despite the corrections and the name mix-up, I returned. It wasn't the first time someone had called me by the wrong name and it certainly wouldn't be the last. I wanted to get as much out of the introductory offer as I could.

Sadly, this instructor didn't seem to get it. For the most part, I was Amanda... on a couple of occasions, I was Alayna, but never Alana.

The indifference to who I was coupled with the overall tone of his classes made it such that I didn't want to renew.

Overcorrected and misidentified: An analogy for the neurodivergent experience.

While most people don't know exactly what it's like to be neurodivergent, they likely have had an experience where they have had their name mispronounced or been misnamed altogether. This unfortunate memory acts as an analogy for the neurodivergent experience in several ways.

Many neurodivergent people feel they are on a different operating system.

I attended yoga that day thinking yoga was yoga. My background is in a different form (Ashtanga) and, as such, was like a fish out of water in Bikram where every other student actually knew the sequence of postures.

Many neurodivergent people have likened our neurology to a video game being on hard for us when it's set to easy for the rest of the world. Or, to a different operating system. Specifically, it is like being a Mac when almost everyone is a PC.

Not only that, but we generally struggle with interoception and self-awareness. So while it may have been painfully obvious I wasn't locking my knee, I genuinely thought I was.

Finally, while it may not have been the teacher's intent, both his tone and inability to use my name made me feel small. This is similar to the neurodivergent experience in that we often tell others how their conceptualizations of us are incorrect, yet there is a propensity to disregard what we've said.

Understanding Identity First Language

Identity first language refers to phrases like "autistic person" or "autistic individual," which place being autistic at the forefront. In contrast, person-first language, such as "person with autism," suggests that autism is something separate from the individual. While the distinction may appear minor, it has critical implications for how neurodivergent individuals see themselves and how society views them.

The push for identity first language has been led by autistic self-advocates who believe it affirms their identity rather than presenting it as a deficit. Research shows that over 85% of autistic people prefer identity first language. Yet, many institutions cling to person-first language, often ignoring the preferences of those they aim to represent. Such disconnect can create feelings of alienation among those whom this language seeks to describe.

The Case Against Person-First Language

A notable illustration of the language debate comes from a letter to the editor published by the Swedish National Society of Autism. A reader expressed concerns that the term "Asperger" might carry negative connotations. However, this argument misses the point. Bertilsdotter Rosqvist (2014) states, "Asperger [or Autistic] is a… name… - like Stockholmare - person from Stockholm."

This comparison emphasizes that identity labels are not inherently negative. The stigma arises from society's perception of those labels. The assertion that "person with autism" is a more positive form overlooks the fact that many individuals embrace their neurodivergent identities with pride. When autism is framed as something separate from the person, we risk perpetuating stigma and misunderstanding.

The Importance of Honouring Preferences

The president of the RFA (Rörelse för Autistiska) responded to the letter by stressing that one is not defined by their impairment but rather has it. This view recognizes that individuals possess unique strengths and challenges. However, the persistent use of "person with autism" in publications raises questions about whose voices are prioritized.

In a 2019 Twitter poll conducted by Autism Speaks, 81.5% of respondents favoured the phrase "I am autistic." This overwhelming preference contrasts sharply with the organization's continued use of person-first language. This disconnect highlights a pervasive issue: society often imposes its views on neurodivergent individuals without fully listening to them.

The Impact of Language on Identity

Language is a powerful tool that shapes our understanding of ourselves and others. For neurodivergent individuals, the words used to describe their identities can significantly affect their self-esteem and sense of belonging. When society defaults to person-first language, it may imply that being autistic is something to be ashamed of.

In contrast, identity first language affirms the individual's experience and identity, fostering pride and acceptance. For example, studies show that individuals who strongly identify with their neurodivergent traits report higher self-esteem levels. By using language that aligns with neurodivergent preferences, we create an inclusive environment. This shift not only helps those who identify as autistic but also promotes a broader understanding of neurodiversity as a vital aspect of human diversity.

Moving Towards Inclusivity

To honour the preferences of neurodivergent individuals, it is essential for parents, educators, and service providers to adopt identity first language. This shift requires a commitment to listening to the community's voices and challenging societal norms that may not reflect their experiences.

Educators can significantly influence the language used in classrooms. By modelling identity first language and encouraging students to embrace their neurodivergent identities, they create an atmosphere of acceptance. Service providers can also ensure their materials reflect the preferences of those they serve, demonstrating a commitment to inclusivity.

Embracing a Healthier Perspective

The conversation around neurodiversity and language continues, but one key takeaway is clear: identity first language matters. It plays a vital role in affirming the identities of neurodivergent individuals and challenging damaging perceptions rooted in stigma. By honouring the preferences of those within the autistic community, we can work towards a more inclusive society that values neurodiversity.

As we progress, it is crucial to listen to neurodivergent voices and adopt the language that resonates with them. By doing so, we empower individuals and contribute to a broader cultural acceptance and understanding of neurodiversity.

A collection of books on neurodiversity and identity first language