Diagnostic criteria for autism and Asperger’s Syndrome continue to be heavily contested, together with the new frontiers of how females correspond and stances regarding autism’s possible historical longevity, there is a further argument gathering force. Sakellariadis (2011) explains that:
Although seemingly bizarre behaviours of people on the autistic spectrum are still considered pathological by some, current literature questions established boundaries of normality and suggests that autism is a condition better understood as one expression of the human condition (p. 1).
This description of differing expressions of the human condition is termed neurodiversity: a recently developed concept that started as a result of those diagnosed with an ASC preferring to be seen as different rather than disabled (Armstrong, 2010). The neurodiversity movement suggests that there is no standard brain, and in today’s world we live in a “disability culture,” where all human beings exist along “continuums of competence” (Armstrong, 2010, pp. 3-11). den Houting (2019) argues that although the neurodiversity paradigm frames autism as a difference, and a cultural identity, not a disability, people with autism are, very often, disabled. den Houting also notes that while it could be the result of a failure of their environment to accommodate their needs, the considerable variation and fluctuation in both capability and capacity that people with autism experience needs to be considered (den Houting, 2019). Further, considering autism to be both a natural variation and a disability, allows for support and services when needed, and also provides acceptance and respect for people with autism, as valuable members of society; a deficit-as-difference conception of autism (Kapp, Gillespie-Lynch, Sherman, & Hutman, 2013). Thus, the notion of autism, that was first considered a mental illness, and more recently an information processing problem, is still under development as we progress through to a more informed, sophisticated and nuanced understanding of the neurodiversity paradigm, by producing research that includes, rather than excludes, the voices of people on the autism spectrum (den Houting, 2019).
The Evolution of Disability Language
There are strong convictions on both sides of the debate between the use of person-first language (e.g., ‘‘person with autism’’) and identity-first language (e.g., ‘‘autistic person’’) (Nicolaidis, 2019). While the American Psychological Association (APA) advocates the use of person-first language, the disability culture advocates the use of identity-first language (Dunn & Andrews, 2015). According to Shakes and Cashin (2019), the adoption of person-first language originates with the disability movement’s attempts to reduce discrimination for people with a disability by placing significance on the person rather than their disability or health condition. On the other hand, attributed to the neurodiversity movement, the implementation of identity-first language has gained momentum within autistic advocacy associations and throughout literature with identified autistic authorship (Shakes & Cashin, 2019). Thus, the discourse of the autistic community, the widening of the autism spectrum and the establishment of the autistic self-advocacy movement has necessitated that appropriate and sensitive ways to refer to people’s disabilities are considered (Bagatell, 2010).
However, the identity-first approach does present some language challenges in regard to communicating about disability. Shakes and Cashin (2019) make the point that “word choice, labels and the like, whether written or spoken, become a challenge because it matters who is doing the representing, who is being represented, and with whom an exchange is occurring” (p. 260). Additionally, previous to the DSM 5 changes to diagnostic criteria, receiving a diagnosis of Asperger’s Syndrome was less associated with disability and dysfunction than was autism (Smith & Jones, 2020). The perception that society is autism-phobic and perceives autism as a significant disability whereas Asperger’s carries the more positive stereotypes of being quirky, but likeable, has meant that many adopt the label of AS as an identity (Smith & Jones, 2020). Therefore, identity-first language may be seen by some as undesirable, while others find it desirable. The study conducted by Shakes and Cashin (2019) found no identified research that systematically explored and considered antagonisms and potential consequences of either mode of language becoming dominant. In the absence of empirical studies to guide practice, it is important that language selection is based on context and the preference of the individual (Shakes & Cashin, 2019).
Dr. Bronwyn Wilson
References
Armstrong, T. (2010). The power of neurodiversity. Philadelphia: Da Capo Press.
Bagatell, N. (2010). From cure to community: Transforming notions of autism. Ethos, 38(1), 33-55. doi:10.1111/j.1548-1352.2009.01080.x
den Houting, J. (2019). Neurodiversity: An insider’s perspective. Autism, 23(2), 271-273. doi:10.1177/1362361318820762
Dunn, D. S., & Andrews, E. E. (2015). Person-first and identity-first language: Developing psychologists’ cultural competence using disability language. The American Psychologist, 70(3), 255-264.
Kapp, S. K., Gillespie-Lynch, K., Sherman, L. E., & Hutman, T. (2013). Deficit, difference, or both? Autism and neurodiversity. Developmental Psychology, 49(1), 59-71.
Nicolaidis, C. (2019). Autism in adulthood: The new home for our emerging field. In (Vol. 1, pp. 1-3): http://doi.org/10.1089/aut.2018.28999.cjn.
Sakellariadis, A. (2011). A wider sense of normal? Seeking to understand Pierre Rivière through the lens of autism. Emotion, Space and Society, 00(0), 1-10. doi:10.1016/j.emospa.2012.03.003
Shakes, P., & Cashin, A. (2019). Identifying Language for People on the Autism Spectrum: A Scoping Review. Issues in Mental Health Nursing, 40(4), 317-325. doi:10.1080/01612840.2018.1522400
Smith, O., & Jones, S. C. (2020). ‘Coming out’ with autism: Identity in people with an Asperger’s diagnosis after DSM-5. Journal of Autism and Developmental Disorders, 50(2), 592-602. doi:10.1007/s10803-019-04294-5