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.”
Identity-First Language
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.
Functioning Labels
Another part of this paradigm shift is stopping the use of functional labels. Autism is a spectrum, not a straight line. Autistic people can appear much more “low functioning” in some situations, and much “higher functioning” in others. An individual’s Autism can look “mild” in some contexts and “severe” in others. Someone generally labeled “high functioning” or “mild” can have a sensory meltdown rendering them unable to communicate verbally, process instructions, and self-regulate. Conversely, someone generally labeled, “low functioning” or “severe” can have amazing skills once provided with the right method of communication and a learning environment that suits and effectively supports them.
Labeling someone as “high functioning” can ignore the supports they need and labeling someone as “low functioning” can ignore their strengths and lead to them being devalued. Autistic people are largely rejecting these labels. Amanda Baggs (also known as Mel Baggs) wrote a scathing plea to those who assume that “high functioning,” “intelligent,” and “articulate” Autistic people (such as Mel was considered) do not have difficulty with self-care and many other life skills. Mel insisted that these viewpoints directly contribute to Autistic people being denied services they need. Autistic people have areas of strength and areas of need, and (as occupational therapists especially!) we need to make sure we are looking at the whole person. One suggestion to reframe this language, is to speak about areas of impact, such as, “he is more impacted in the area of self-care skills,” instead of blanket statements regarding the person’s function level. Even better, is adopting a strengths-based perspective, such as touted by occupational therapist Kristie Patten Koenig.
Listening to Autistic Voices
This year, I learned the importance of listening to Autistic voices. I may have lost sight of how important this is because I work with Autistic children—but all Autistic children will become Autistic adults, and all Autistic adults were once Autistic children. There is no better expert to provide insight into Autistic children than Autistic adults! I realized that, although I thought I was an ally and advocate for the clients I worked with, I was not really listening enough. I was not truly understanding neurodiversity.
“Nothing about us without us,”—a popular slogan of disability rights—sounds so common sense, however, I never realized until recently how many so-called experts and professionals working with Autistic individuals, myself included, have not truly included the opinions of Autistic people when developing treatment protocols, educational curriculums, supported employment agencies, charities, and awareness campaigns. In recent months, I have been actively seeking out more Autistic voices by reading more books and blog posts by Autistic authors, and have joined Facebook groups run by Autistic people that prioritize Autistic voices. These efforts are to continue listening and allowing these voices to help shape me into a more effective professional, advocate, and ally for this community. I challenge my colleagues to also seek out and listen to Autistic voices.
Implications for Occupational Therapists
As occupational therapists, part of our role is adapting the environment to help our clients be successful. I now realize part of adapting the environment is being part of the change in a paradigm shift in how society views disability and neurodivergence. So, as an occupational therapist or other professional working with Autistic individuals, what can we do?
1. Remember that Autistic people are the true experts on autism. Try to seek out Autistic voices. There are other great blogs that post extensively about Neurodiversity and many other topics pertaining to autism (suggestions below). Visit websites for autism related organizations that spotlight Autistic voices (suggestions below). Join Autistic-run Facebook groups such as “Actually Autistic Adults and Allies,” and take the time to listen to the conversations and read the resources there (there is a rule that only Autistic members can respond to posts within the first 24 hours).
2. More importantly, remember that each individual client you work with is the expert on themselves. While the autism community at large is communicating a preference for identity-first language, there are individuals who DO prefer person-first. Therefore, if the client has the ability to communicate their preferences in how their identity is spoken about, it is ALWAYS BEST practice to ASK THEM if it is relevant to conversation! The same goes for the language used to describe their race and ethnicity, sexual orientation, and personal pronouns. Also remember that some people use terms to describe themselves (related to disability, ethnicity, sexual orientation, etc.) that they would prefer others—or others not a part of the same group as them—not use. So, moral of the story, just ask!
3. Talk to other professionals about neurodiversity, identity-first language, and functioning labels, and share resources with them!
There are many great resources out there, here are just a few!
Recommended Websites (blogs, organizations):
Books:
“Autistic Community and the Neurodiversity Movement: Stories from the Frontline” Edited by Steven K. Kapp
“NeuroTribes: The Legacy of Autism and the Future of Neurodiversity” by Steve Silberman
Follow on Facebook:
Center for Understanding (this page is run by my professor, Dena Gassner)
The Autistic OT
Ask an Autistic
Follow on TikTok:
paigelayle
Author’s Bio
Kristin Tatelman, MS, OTR/L graduated from Ithaca College in 2009 with a combination Occupational Science BS/Occupational Therapy MS. Kristin began her Occupational Therapy career in Brooklyn, NY working in a variety of pediatric settings including an outpatient clinic, homecare, public schools, and non-public special education schools. She now lives in Maryland and works in a non-public special education school for students diagnosed with autism and intellectual disabilities in the Washington, DC metro area. Kristin currently attends Towson University pursuing a doctoral degree (ScD) in Occupational Science and a Post-Baccalaureate Certificate in Autism Studies. She is also working to become a Certified Autism Specialist (CAS). Her professional interest areas are sensory processing, feeding, and school-based therapy. Kristin enjoys running, listening to records, painting, caring for houseplants, and spending time with her husband and dog.