By Kristin Tatelman, MS, OTR/L
For the past 10.5 years, I have been working as a pediatric occupational therapist, primarily with Autistic children. Yes, I said “Autistic children” not “children with autism,” “children on the autism spectrum,” or “children with Autism Spectrum Disorder.” Allow me to elaborate.
The Neurodiversity Movement
I have recently returned to academia, working towards my doctoral degree in Occupational Science and a certificate in Autism Studies at Towson University. This year, for the first time, I was exposed to the Neurodiversity Movement by one of my professors, Dena Gassner, who herself is Autistic. The Neurodiversity Movement centers around Autism being a neurotype—a natural brain variation—rather than a defect. The movement calls for a paradigm shift in how society views autism.
In over a decade working with the autism population—taking many continuing education courses, collaborating with countless other professionals, reading numerous articles and books about autism—2020 was the first time I was confronted with this philosophy that transformed the way I viewed the diagnosis I thought I knew so much about.
Neurodiversity goes hand-in-hand with the Social Model of Disability, which argues that a person is disabled only when the societal environment does not accommodate their needs. Accordingly, autism is not a pathology, but a neurologic variation that should be accepted and accommodated, instead of focusing on “cures” or other treatments that will make Autistic people “appear more neurotypical.” Jacquiline den Houtingprovides a powerful perspective about the Neurodiversity Movement, stating, “[i]mportantly, to minimise [sic] disability for Autistic people, both the physical AND social environments require change, as attitudinal barriers to inclusion and acceptance are often significant. Providing a non-speaking Autistic person with an alternative method of communication may give them a voice, but they will only truly stop being disabled when others listen.”
Part of embracing neurodiversity involves how professionals speak about autism, such as using identity-first language rather than person-first language. This means saying “Autistic person” as opposed to “person with autism.” Why? Many Autistic people say autism is not something they have, but an immutable part of who they are. The Deaf community also largely prefers identity-first language. When speaking about the preference for identity-first language, Jim Sinclair, the founder of the Autism Network International states, “Autism is hard-wired into the ways my brain works. I am autistic because I cannot be separated from how my brain works.”
According to Autistic Hoya, the nom de plume of Lydia X. Z. Brown, “[n]eurodiversity says that the ability of an individual should be augmented and supported, and the disability should be mitigated and accommodated. It says that the value or worth of the individual is not less because of autism, and that autism is an important and valuable aspect of a person's identity (Autism FAQ).” Saying “Autistic” instead of “with autism” conveys that autism is part of who the person is, and is a positive, valuable, inseparable part of them.
When I was in OT school, person-first language was constantly taught and emphasized. We were told it conveys respect for individuals with disabilities. In my career as an occupational therapist, person-first language has continued to be the professional standard. However, according to “The Significance of Semantics: Person-First Language: Why It Matters” by Autistic Hoya, “[autism] is an edifying and meaningful component of a person's identity, and it defines the ways in which an individual experiences and understands the world around him or her. It is all-pervasive. … It is impossible to affirm the value and worth of an Autistic person without recognizing his or her identity as an Autistic person. Referring to me as ‘a person with autism,’ or ‘an individual with ASD’ demeans who I am because it denies who I am.” Until I read this post, I never realized that the language I had been taught to use to convey respect could actually be perceived as disrespectful by many Autistic people and is not the preferred terminology in the autism community at large.
Since I began to shift my own lexicon to identity-first language, I have noticed quite a bit of pushback in professional spaces, which indicates that most other professionals may not be familiar with the concept of neurodiversity, as I was not for many years. If we are to work with Autistic individuals, it is important to seek a deeper understanding of their community, including what terminology they prefer we use to speak about them.