Language, while seemingly straightforward, often acts as a powerful symbol of identity, belonging, and representation. Within the neurodivergent community, particularly among autistic individuals, the choice of language holds profound significance, shaping not just personal perceptions but societal attitudes and biases. The debate surrounding Identity-First vs Person-First language is not just a matter of linguistic preference but touches upon deeper aspects of identity, acceptance, and empowerment.
Our previous discourse on “What Language Should I use Around Autism?” broached the overarching themes and considerations regarding linguistic choices in the context of autism. It highlighted the complexities of self-identification and societal labelling, setting the foundation for a more intricate exploration. Expanding upon that preliminary discussion, this article delves deeper into the intricacies, origins, and implications of choosing between Identity-First and Person-First language. By juxtaposing these two approaches, we aim to illuminate the nuanced dynamics at play and offer insights into the lived experiences of autistic individuals navigating this linguistic landscape.
The intricacies surrounding Identity-First and Person-First language are deeply embedded in historical, social, and cultural contexts, with both approaches originating from genuine pursuits of respect and empowerment.
Origin of Person-First Language
Person-First Language (PFL) emerged during the late 20th century, mainly due to the efforts of the disability rights movement. The movement, focused on reshaping societal views of disabilities, identified the importance of language in changing perceptions.
At its core, PFL sought to present people as multi-dimensional beings, rather than just by their disability. Instead of labels like "disabled person," advocates promoted terms like "person with a disability" or "person with autism." This choice of words was more than just a grammatical change; it symbolised a shift in perspective. By placing the person before the disability, it emphasised their humanity and individuality.
This approach was about recognising and respecting the dignity of every individual. The hope was that, by adjusting how we speak about disabilities, society might also adjust its attitudes. The aim was to create an environment where everyone is recognised for their abilities and experiences, rather than being sidelined due to their disabilities.
PFL's rise also aligned with a broader movement towards inclusivity for individuals with disabilities. Many countries started introducing laws and policies that aimed to provide better opportunities and rights for this group. While these were more tangible steps, PFL worked on the less visible, but equally vital, front of language and representation.
It's worth noting that while PFL had the best intentions, it has seen mixed reactions. Some feel that while it underscores humanity, it might unintentionally suggest that disabilities are negative or need to be separated from one's identity. This highlights the complexity of language choices and the need for ongoing discussions in the disability and neurodiversity communities.
Origin of Identity-First Language and Its Significance
Identity-First Language (IFL) is more than just a linguistic preference; it is deeply intertwined with issues of identity, self-perception, and broader societal understandings. Traditionally, much of society and the medical community approached differences, like the autistic neurotype, through a lens of pathology. There was an implicit suggestion that those who deviated from the norm needed treatment or intervention. This perspective often led to feelings of exclusion and marginalisation for those it described.
Against this backdrop, the emergence of IFL marks a significant departure. When individuals began referring to themselves as an "autistic person" rather than a "person with autism”, they were making a clear statement: being autistic is not a condition that they 'have,' but rather a core part of who they 'are.'
The rise of IFL has run parallel to the neurodiversity movement. This movement posits that neurological variations, including the autistic neurotype, are not deficits, but natural and valuable facets of the human experience. It champions the idea that every individual's cognitive processes and perceptions have inherent worth.
For many, choosing to use IFL is a significant step in self-empowerment. It reflects a rejection of older, stigmatising narratives. Instead of viewing the autistic neurotype as something external, like an add-on, IFL places it at the forefront, shining a light on its positive attributes, such as the ability to deeply focus, sensitivity to details, unique ways of problem-solving, or a distinctively rich inner world. These attributes challenge stereotypical perceptions and advocate for a broader, more inclusive understanding.
The adoption of IFL is not just an individual decision but has broader societal implications. It influences how society understands and engages with the Autistic Community. Where once there might have been a one-size-fits-all approach, there's now a growing recognition of the rich diversity within the Autistic Community. By defining and naming their own experiences, individuals using IFL are actively shaping the discourse around the autistic neurotype, encouraging a shift from mere tolerance to genuine appreciation and understanding.
The emergence of Identity-First Language reflects evolving perceptions, not just about the autistic neurotype but about identity and diversity in general. As society continues to grapple with these issues, the choices we make in language will undoubtedly play a pivotal role in shaping future discourses.
Community Preferences
It's crucial to note the significance of listening to and respecting community preferences when it comes to language. Many surveys and discussions within the Autistic Community have consistently highlighted a preference for Identity-First Language. This is not a unanimous decision, as linguistic preferences can be deeply personal and varied, but it is a predominant trend. Advocates of IFL often express that for them, being autistic is as integral to their identity as gender, nationality, or ethnicity; it's not something they have, but something they are.
While both PFL and IFL have their roots in attempts to provide respect and dignity to autistic individuals, they have different philosophical underpinnings and have been championed by different groups at different times. The key, as with many aspects of language and identity, lies in personal preference, respect, and understanding.
The landscape of language surrounding the autistic neurotype is rich, diverse, and deeply impactful. Delving deeper into the lived experiences and writings of prominent autistic individuals provides a unique perspective on this discussion.
Expanded Real-Life Experiences and Case Studies
Lydia Brown, a notable autistic activist and writer, has been outspoken about her preference for Identity-First Language. In her blog, she explicitly writes, "*When we say 'person with autism,' we say that it is unfortunate and an accident that a person is Autistic. We affirm that the person has value and worth, and that autism is entirely separate from what gives him or her value and worth. In fact, we are saying that autism is detrimental to value and worth as a person, which is why we separate the condition with the word 'with' or 'has.'"* (Brown, 2011). This perspective resonates with many autistic individuals who view their neurotype as an inseparable and valuable facet of their identity.
In *NeuroTribes*, Silberman delves into the history and evolution of autistic self-advocacy. He quotes Jim Sinclair, a pioneering autistic advocate, who said, "*Why do we need a euphemism for autism? Why can't it be said? I'm autistic.*" Silberman notes, "Sinclair's point was that distinguishing between the person and the condition in this way implies that it's a negative, shameful or tragic condition." (Silberman, 2015).
Julia Bascom, in her anthology *Loud Hands: Autistic People, Speaking*, touches upon her personal relationship with language and autism. She articulates, "*When I say I am Autistic, I am acknowledging my shared experiences and history with other Autistic people. It locates me as part of a larger group, and resists the isolating and individualizing tendency to see each Autistic as a person who happens to be affected by autism.*" (Bascom, 2012).
As the co-founder of the Autistic Self Advocacy Network (ASAN), Ari Ne’eman’s stance on this subject holds considerable weight. He mentioned in an interview, "*To be Autistic is to be a part of a broad, diverse community with its culture, history, and shared experiences. To have autism, on the other hand, is to be a case study.*" (Ne'eman, 2010). This distinction underlines the importance of community and shared identity that many find in using Identity-First Language.
An academic study conducted by *Dunn & Andrews (2015)* reviewed a selection of blog posts by autistic authors. One recurring sentiment was the sense of unity and identity that many autistic writers felt with Identity-First Language. One anonymous blogger was quoted as saying, "*To me, saying 'person with autism' feels like saying 'person who breathes air'. It’s not something I have. It's something I am.*"
Language is not merely a tool for communication but a profound vessel of identity, representation, and belonging. While the shift towards Identity-First Language is clear within much of the active Autistic Community, it's essential to engage with these discussions with empathy, open-mindedness, and a willingness to learn.
Our deep dive into Identity-First vs. Person-First language has shown just how vital words are. They're more than just terms; they shape how we view the world and, importantly, how us in the Autistic Community sees ourselves.
We've learned that Person-First language, while coming from a good place, sometimes misses the mark. It tries to separate an individual from their autistic neurotype, which many of us in the Autistic Community don't want. For us, being autistic isn't something we 'have' – it's who we are. This sentiment shines strongly in Identity-First language, a choice that many celebrate as it embraces autism as a part of their core identity.
When we listen to the thoughts and feelings of people like Lydia Brown, Steve Silberman, Julia Bascom, and Ari Ne'eman, it's clear that words matter. Their voices remind us of the importance of understanding, respect, and inclusivity.
So, what's the main takeaway? Listen to the Autistic Community. Our choices in how we talk about autism aren’t just preferences; they’re powerful statements about identity and acceptance. Let's respect and uplift these choices, embracing a future where everyone feels seen and valued for who they are.
References
Grandin, T. (1995). *Thinking in pictures: And other reports from my life with autism*. New York: Vintage Books.
Johnson, L., Smith, R., & Brown, A. (2017). The influence of cultural perspectives on person-first vs identity-first language use. *Journal of Autism and Developmental Disorders, 47*(9), 2810-2818.
Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C., & Pellicano, E. (2016). Which terms should be used to describe autism? Perspectives from the UK autism community. *Autism, 20*(4), 442-462.
Smith, J. (2019). *My life as an autistic individual: Perspectives and narratives*. Cambridge: Cambridge University Press.
ASAN. (2018). *Identity and Inclusion: A Guide on Person-First vs Identity-First Language*. Autistic Self Advocacy Network.
Bascom, J. (Ed.). (2012). *Loud Hands: Autistic People, Speaking*. The Autistic Press.
Brown, L. (2011). Identity and Hypocrisy: A Second Argument Against Person-First Language. *Autistic Self Advocacy Network*.
Silberman, S. (2015). *NeuroTribes: The legacy of autism and the future of neurodiversity*. Penguin.
Brown, L. (2011). The Significance of Semantics: Person-First Language: Why It Matters. *Autistichoya*.
Dunn, D. S., & Andrews, E. E. (2015). Person-first and identity-first language: Developing psychologists’ cultural competence using disability language. *American Psychologist, 70*(3), 255.
Ne'eman, A. (2010). The Future (and the Past) of Autism Advocacy. *Interview with Disability Studies Quarterly*.
This neuroaffirming article on 'Should I Say Autistic or With Autism? | Deep Dive | Identity-First vs Person-First Language' delves into crucial insights surrounding the choice of language within the Autistic Community. Topics covered include "Language and Identity in Autism," "Impact of Identity-First and Person-First Language," "Community Perspectives on Language," and "Autistic or With Autism?"
Please note, the language used in the search terms above may not be neuroaffirming, but they may be search terms that people use. By listing these here, the hope is that people may end up accessing this article and learning about the autistic neurotype through a neurodiversity-affirming lens, rather than the impairment-based information that is so plentifully available.