Autism

Reframing Professional Language Around Autism

Reflecting on our use of language in professional contexts.

Posted Jun 10, 2020

Andrea Piacquadio/Pexels
Reading a report written about you focused on “deficits” can be demoralizing, upsetting, and negatively impact mental health
Source: Andrea Piacquadio/Pexels

In previous posts, we've discussed some of the changes in how we view ourselves and the language we use to describe ourselves since our respective diagnoses of autism. We explained how this was an empowering process, as increased self-understanding helped us to create lifestyles that better suit our needs. But while the way we viewed ourselves shifted radically for the better, since diagnosis we have both, for the first time, found ourselves being pathologized by our colleagues.

From our years spent studying and working, we are accustomed to reports, performance appraisals, and supervision sessions that involve feedback about our work, our strengths, and our challenges. Following being diagnosed as autistic, though, we faced a significant shift in the language that others ascribe to us. Our ways of being in the world were suddenly described with terms like “maladaptive behavior,” “very severe social deficit,” and “severe and enduring deficiencies.”

Even years of training based on medical model assumptions, learning how to write reports just like the ones we received, did not prepare us for reading such heavily pathologizing and deficit-based descriptions about ourselves. Knowing that such descriptors are medicalized interpretations of details you have given about how you live your life, how you experience the world, and how you engage in self-care does little to soften the blow. Realizing that parts of yourself that you embrace and value are being described as “maladaptive” or “clinically significant” creates a dissonance in thinking that can be painful to reconcile.

In reading these descriptions, and feeling the sting of such pathologizing language, we questioned how this might feel were we not in positions of educated privilege, understanding that these descriptions do not directly reflect us, but rather are reflections of us through the lens of the medical model of healthcare.

The medical model describes an approach to healthcare that aims to identify and subsequently treat disorders, injuries, or diseases occurring within the individual. While the medical model makes sense when seeking healthcare for a broken arm, it has been criticized for its narrow focus and tendency to pathologize the individual in mental health and disability settings, rather than seek an understanding of the individual’s experiences in a wider socio-cultural context. The vast majority of medical and allied health professionals, educators, and those working in social services, are taught to communicate in a style consistent with the medical model. As such, communicating with words like “deficit,” “disorder,” and “maladaptive” is not only normalized but expected within these professional contexts. That said, this does not mean that we cannot find alternative, more respectful, inclusive ways to communicate while maintaining (or even enhancing) our professionalism.

Professionals are often hesitant to change the language they use when communicating about autistic folk, fearing that it will be inconsistent with the diagnostic manuals or the language used in research about autism, or out of concern that it will be contradictory to the way evidence-based practice is described. Practitioners are often inclined to follow such conventions for fear that any deviation from these embedded norms will place a question mark over their credibility.

However, it is important to note that this language does not provide any extra credibility just because it is derived from the conventional language ascribed to autism; it is simply reflective of a lens that adopts a reductive approach to the human condition. Such language doesn’t reflect the shared experience of being human, nor embrace variation among humans, but rather judges one way of being in the world as correct, and another as damaged, deficited, or disordered. Even with all the careful wording, correct summarizing of test results, and aesthetic formatting and letterheads, if a piece of writing is based on the idea that some people are “correct” and others are inherently “wrong,” then it is likely to land as quite a heavy blow when read by an autistic person and their loved ones.

It is understandable that professionals might be careful to write from the paradigm entrenched in their formal studies, or feel concerned about the credibility of their language if they deviate from this. However, it is arguably more important to exercise caution about the impact we have on the self-concept and mental health of those whom the reports are written about. Passing these highly pathologized words down the generations, from professional to professional through journal articles, educational programs, and peer supervision, is not in the best interest of the people being written about; nor does it align with the societal shifts in the way autism is understood, beyond the narrow lens of the medical model.

Reframing our language under a new paradigm

Autistic advocates and a number of those in the research space have shifted their approach to align with the neurodiversity paradigm.1 While the medical model suggests autism is inherently pathological and requires a cure, the neurodiversity paradigm recognizes autism as a natural part of human variation and explains the disability autistic people experience as a result of living in a world embedded with neuronormative expectations and structures.2 Thus, we see a shift from attempts to normalize, remedy, or alter the autistic experience, to recognizing neurodivergence as a natural variation that enhances the richness of humanity.

When we move beyond the medical model that pathologizes autism, we can reframe our perceptions and the language we ascribe to the autistic experience. Rather than seeing autistic people’s experiences as flawed versions of the non-autistic experience, we can appreciate autistic individuals’ different, and equally valid, ways of being in the world.

For example, we can reframe what may be perceived as “non-functional language use” under the medical model to view such behavior as flexible or creative use of language; “resistance to change” or “rigidity of routine” can just as easily be described as a “preference for sameness and consistency.” Rather than saying, “narrow, obsessive interests” we can describe the magnitude of their “depth of interest,” “monotropic focus,” or propensity to feel “very passionate about their areas of interest.”

“Restricted, repetitive behaviors” can be described in terms of “enjoying moving their body in the same way over and over again” or “a propensity for devising creative play rituals.” “Severe aversion to certain tastes leading to picky eating” could be reframed as “a sensitive palate resulting in very specific food preferences.” This approach is, objectively, a more accurate way of describing the way an individual relates to the world around them while avoiding deficit-based conceptualizations.

Reframing our views and the descriptors we use can promote positive mental health outcomes for autistic individuals.3 When we say that a person’s natural way of being in the world is maladaptive or disordered, we risk negatively impacting their self-concept, reinforcing societal stigma, and potentially exacerbating internalized ableism. All people need messages of acceptance to feel good about themselves and their place in the world. Clinicians, educators, and other professionals have a duty of care to those they work with, and it is critical that we reflect on the language we use and how it might impact those we seek to support in our professional capacities.

In a companion post, we provide practical examples for professionals to promote respectful, inclusive language.

References

[1] den Houting, J. (2019). Neurodiversity: An insider's perspective. Autism, 23(2), 271-273. doi:10.1177/1362361318820762

[2] 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. doi:10.1037/a0028353

[3] Dillon, J. (2011). The Personal is the Political. In M. Rapley, J. Moncrieff, & J. Dillon (Eds.), De-Medicalizing Misery: Psychiatry, Psychology and the Human Condition. London: Palgrave MacMillan.