Preferences for identity-first versus person-first language in a US sample of autism stakeholders
Language and Disability
Language affects thought and perception; the words we use have social, cognitive, and emotional significance.
The terminology used to refer to individuals with disabilities has evolved over time.
Person-First vs Identity-First Language
Person-First Language (PFL): Emphasizes the individual before the disability (e.g. "person with autism").
Widely used in professional contexts to promote respect and reduce discrimination.
Critiques argue it can perpetuate stigma by awkwardly emphasizing the disability.
Originated from the People First movement in the 1970s and 1980s, aimed at reducing negative stereotypes.
Supported by guidelines from professional organizations like APA, AMA, and APS.
Identity-First Language (IFL): Embraces the disability as an integral part of the individual’s identity (e.g. "autistic person").
Gaining recognition among disability advocates and stakeholders, notably autistic individuals.
Suggests that distinguishing between person and disability may overlook personal identity.
Scholars argue that IFL reduces the sense of stigma associated with disability, embracing it as part of one’s identity.
Research Study Overview
The study surveyed 728 autism stakeholders in the US about their language preferences concerning autism.
Participants included autistic adults, parents, friends/family, professionals, and comparison groups.
Demographics of Participants
Sample consisted of 299 autistic adults, 81 parents, 44 friends/family, 207 professionals, and 97 with little experience in the autism community.
Participants were diverse in gender and race/ethnicity, with most identifying as White.
Findings
Preference-Selection Task: Autistic adults significantly preferred IFL over PFL; professionals favored PFL.
Rating Task: Autistic adults rated IFL terms as more likable than PFL terms. Parents rated both types similarly.
Forced-Choice Task: Majority of autistic adults selected IFL terms to identify themselves, particularly "I am autistic."
Discussion
Findings indicate varied preferences across stakeholder groups, with a clear trend toward identity-affirming language in the autistic adult community.
Emphasizes the need for communication between professionals and individuals in the autism community regarding preferred terminology.
Highlights a shift in perception among professionals regarding the appropriateness of IFL in discussions of disability.
Implications
Professionals should inquire about individual preferences for PFL or IFL when engaging with autistic individuals.
Ongoing discussions among autism professionals are needed to align practice with community preferences when using language.
Future research should examine the real-world impact of language preferences on perceptions and stigma associated with autism.
More Detailed Notes
Language and Disability
Language affects thought and perception; the words we use have profound social, cognitive, and emotional significance. The way we talk about individuals with disabilities plays a crucial role in shaping societal attitudes and can influence the lived experiences of these individuals.
Terminology Evolution
The terminology used to refer to individuals with disabilities has evolved considerably over time, reflecting broader changes in societal attitudes and understanding of disability. This evolution emphasizes the importance of language in promoting dignity and respect.
Person-First vs Identity-First Language
Person-First Language (PFL):
Definition: PFL emphasizes the individual before the disability, using phrases like "person with a disability" or "person with autism."
Usage: It is widely adopted in professional contexts, including healthcare, education, and social services, as a way to promote respect and reduce discrimination.
Critiques: Some critics argue that PFL can inadvertently perpetuate stigma by awkwardly separating the person from their disability, suggesting a negative connotation attached to the disability itself.
Historical Context: This form of language originated from the People First movement in the 1970s and 1980s, which aimed to reduce negative stereotypes and promote an understanding of disability as part of human diversity.
Support: Professional organizations such as the American Psychological Association (APA), American Medical Association (AMA), and American Psychological Society (APS) endorse PFL in their guidelines to foster respectful communication.
Identity-First Language (IFL):
Definition: IFL embraces the disability as an integral part of the individual’s identity, using terms like "autistic person" or "disabled individual."
Recognition: It is gaining recognition among disability advocates and stakeholders, particularly within the autistic community, where many individuals feel that their disability is an essential aspect of who they are.
Philosophical Standpoint: Proponents of IFL argue that distinguishing between a person and their disability may overlook a crucial part of their identity, potentially negating the positive aspects of being part of that community.
Stigma Reduction: Scholars suggest that IFL can reduce stigma, as it embraces disability as a facet of a person's identity rather than a negative label.
Research Study Overview
A comprehensive study surveyed 728 autism stakeholders in the United States regarding their language preferences relating to autism. The focus was to understand how these preferences intersect with identity and community perception.
Demographics of Participants
Sample Composition: The study included 299 autistic adults, 81 parents of autistic individuals, 44 friends and family members, 207 professionals in relevant fields, and 97 individuals with limited experience in the autism community.
Diversity in Demographics: The participating group demonstrated a diverse representation of gender and race/ethnicity, though the majority identified as White.
Findings
Preference-Selection Task
Autistic adults displayed a strong preference for IFL over PFL, indicating a shift toward identity-affirming language within this community.
In contrast, professionals leaned towards PFL, reflecting traditional practices in language use.
Rating Task
Autistic participants rated terms associated with IFL as significantly more likable compared to those linked with PFL.
Parents of autistic individuals rated both PFL and IFL similarly, showing a nuanced understanding of both perspectives.
Forced-Choice Task
The majority of autistic adults selected IFL terms to describe themselves, with many specifically choosing the phrase “I am autistic,” indicating pride in their identity.
Discussion
The findings reveal diverse preferences across different stakeholder groups, underscoring a clear trend toward identity-affirming language, particularly within the autistic adult community.
This highlights the necessity for ongoing communication between professionals and community members to align on preferred terminology.
Moreover, the trends indicate a shift in professionals' perceptions regarding the appropriateness of IFL in discussions surrounding disability and identity