The autistic language debate can seem confusing and unnecessarily intense. The choice between person-first language, e.g., person with autism, or identity-first language, e.g., autistic person, appears simply semantic. However, as language is a powerful creator of meaning, this debate is neither simple nor semantic. A deeper view reveals that each language choice originates from differing historical models of disability, each assigning a different level of autonomy and value to the autistic population. Therefore, understanding these models is vital to knowing why people choose either identity- or person-first language. What follows is a brief explanation and description of the autistic language debate.
Medical Model of Disability and Language
Person-first language (PFL) was born from a social reaction to a dehumanizing problem. This problem began in 1908 when German psychiatrist Eugene Bleuler adopted the term autism to refer to various symptoms of schizophrenia. Autism as a symptom continued until the 1940s, when Leo Kanner and Hans Asperger individually discovered a syndrome they named autism. Autism became an established disorder in 1980 when infantile autism was added to the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, third edition (DSM-III). For a brief overview of this history, see the history of autism.
Psychiatrists and physicians during that period guided autism research and communication using a medical model of disability, which portrayed autism as a medical problem to be treated or cured.1 Consequently, language from that era was objectifying, typically referring to patients by their disorder, such as the retarded, deaf-mutes, and similar references.1 Of course, as the science and century advanced, so did the sentiment that this language was offensive and dehumanizing.
Change would begin when, during a disability rights convention in 1974, a disabled self-advocate exclaimed I’m tired of being called retarded. We are people first (People First Spokane Valley 2005).2 Embedded within that plea were the seeds of PFL.
Person-First Language: Social Model of Disability
The move toward PFL had begun years earlier. In 1960, social psychologist Beatrice Wright, a pioneer in rehabilitation psychology, published research objecting to the dehumanizing language central to the medical model of disability.3 Wright, advocating for a social model of disability, proclaimed that language prioritizing the disability over the person advanced harmful stereotypes and the potential for victimization.1 The social model of disability suggests language that prioritizes the person over the disability, emphasizing the uniqueness of each individual regardless of their shared condition.1 By restoring each person’s unique characteristics, including strengths, preferences, etc., their disability becomes less an overarching identity and more an assembly of social barriers. Consequently, the focus shifts from one’s condition to coping with the physical barriers and attitudinal issues preventing their full participation in society.1 As Wright’s social model of disability proliferated, PFL emerged.
Professional organizations such as schools, hospitals, and clinics gradually embraced PFL. At the same time, the style guides of organizations such as the American Psychological Association, the American Medical Association, the American Psychiatric Association, and the American Speech-Language-Hearing Association began to prescribe its use.4 Ultimately, by the late 1980s, PFL became the common reference language used throughout these professional settings.4 Today, several of these professions continue to embrace PFL.
Identity-First Language: The Neurodiversity Paradigm
Addressing an autism conference in Toronto in 1993, autism-rights activist Jim Sinclair sparked the neurodiversity movement and identity-first language.5 Sinclair, introducing himself as autistic, began his speech Don’t Mourn for Us by challenging attendee parents to think about their autistic children differently.6Sinclair echoed the grief, disappointment, and trauma parents regularly expressed after having an autistic child. He clarified that their grief was for the child they expected, not the autistic child before them now. With their support and acceptance, they and their child could form a meaningful relationship, something their current expression of disappointment and grief would certainly derail.7 Sinclair explains,
You didn’t lose a child to autism. You lost a child because the child you waited for never came into existence. That isn’t the fault of the autistic child who does exist, and it shouldn’t be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don’t mourn for us. We are alive. We are real. And we’re here waiting for you.
This is what I think autism societies should be about: not mourning for what never was, but exploration of what is. We need you. We need your help and your understanding. Your world is not very open to us, and we won’t make it without your strong support. Yes, there is tragedy that comes with autism: not because of what we are, but because of the things that happen to us. Be sad about that, if you want to be sad about something. Better than being sad about it, though, get mad about it–and then do something about it. The tragedy is not that we’re here, but that your world has no place for us to be. How can it be otherwise, as long as our own parents are still grieving over having brought us into the world? 7
Sinclair’s speech began the grassroots expansion toward neurodiversity and IFL, concepts that are inherently linked. As PFL marked the transition from the medical model to social model of disability, identity-first language (IFL) emerged during the expansion of that social model toward the neurodiversity paradigm.8 Consequently, one must grasp neurodiversity to understand the purpose of IFL.
Neurodiversity was first developed in the late 1990s by Australian sociologist Judith Singer, who was self-diagnosed as autistic. The concept was first published in the Atlantic by American journalist Harvey Bloom in 1998.5 Neurodiversity is the theory that no two brains are neurologically alike, whether they be neurotypical, e.g., the dominant or common type, or neurodivergent, e.g., diverging from the common type.9 The theory also claims that neurodivergencies, such as autism, ADHD, dyslexia, etc., are naturally occurring variations rather than pathologies.6
Neurodiversity recognizes that autistic disability is primarily defined by the inhospitable nature of the neurotypical world in which they live.8 Therefore, autistics should be recognized for their distinctive strengths, not for standing out in a world not built for them.10 To that point, neurodiversity is also the model for the growing autistic civil rights movement. This movement claims that the most astute interpreter of autistics are autistics themselves, not their parents or doctors.6 Under the banner nothing about us without us, autistics join the larger disability community to comprise the largest minority group in the US, collectively addressing their social, political, civil, and economic needs.1 So, of course, this has impacted autistic self-image and the language used to reference it.
IFL, MML, and PFL: Critical Review and Path Forward
IFL differs from both PFL and language derived from the medical model (MML). IFL, emphasizing autistic identity above all, portrays autism as both a disability and a positive center to an autistic’s identity. As with other minority groups, such as black or black person, IFL portrays autistic or autistic person in terms that reflect their minority class status.
MML contrasts IFL due to its negative views of all disabilities, which are indistinguishable from the disabled person themselves. Here, the resulting disabled person is a human tragedy who needs to be fixed, cured, institutionalized, etc. by a medical professional with the power to do so.11 MML portrays disabled people as deviants from the societal norm, designating the latter as superior to them.11
PFL improves upon MML by demonstrating value for the person with disability. PFL dictates the noun identifying the person be placed before other identifiers, separating, then prioritizing the person. For example, person with cancer, person with leukemia, etc. Therefore, PFL lessens the overarching presence of disability as the defining feature, freeing the remainder of the person from related scrutiny or prejudice.1 However, IFL advocates are quite critical of this claim. They argue that this separation of person from disability, without valuing both entities, actually causes scrutiny, prejudice, and other forms of stigma. Mostly autistics themselves, IFL advocates point to a history of intolerance and abuse experienced during the era of PFL as evidence of this stigma.12
Passionate voices on both sides of the language debate make the path forward unclear. At the moment, the only apparent middle ground is to respect each other’s choices. That is, to respect that while some members of the autistic community prefer PFL, other members prefer IFL.4 Regardless of our own preferences, we should at least be willing to listen to each other without prejudice. This acknowledges the value of all peoples’ experiences while deepening the understanding of each other’s language choices across the autism community.
References
- Dunn DS, Andrews EE, Dunn DS. Identity-First Language. 2015;70(3):255-264.
- Vivanti G. Ask the Editor: What is the Most Appropriate Way to Talk About Individuals with a Diagnosis of Autism? J Autism Dev Disord. 2020;50(2):691-693.
- Wright BA. Physical Disability–A Psychological Approach. Harper & Row Publishers; 1960.
- Taboas A, Doepke K, Zimmerman C. Short report: Preferences for identity-first versus person-first language in a US sample of autism stakeholders. Autism. Published online 2022.
- Donvan J, Zucker C. In a Different Key: The Story of Autism. Broadway; 2017.
- Silberman S. NeuroTribes : The Legacy of Autism and the Future of Neurodiversity. Avery; 2016.
- Sinclair J. Don’t Mourn for Us. Our Voice. 1993;1(3):volume 1, number 3. http://www.autreat.com/dont_mourn.html
- Chapman R. Neurodiversity, disability, wellbeing. Neurodiversity Studies. Published online June 2, 2020:57-72.
- Singer J. Neurodiversity : The Birth of an Idea. University of Technology, Sydney; 2017. Accessed May 17, 2023.
- Chapman R. Defining neurodiversity for research and practice. Neurodiversity Studies. 2020;(September):218-220.
- Retief M, Letšosa R. Models of disability: A brief overview. HTS Teologiese Studies / Theological Studies. 2018;74(1):1-8.
- Gernsbacher MA. Editorial Perspective: The use of person-first language in scholarly writing may accentuate stigma. J Child Psychol Psychiatry. 2017;58(7):859-861.