Erin Bulluss, Ph.D., and Abby Sesterka

Insights about Autism

Autism

Reframing Professional Language Around Autism in Practice

A practical guide to using respectful language in the professional context.

Posted Jun 11, 2020

Erdenebayar/Pixabay
It is vital that we reflect critically on our own use of language and whether it aligns with our beliefs and values.
Source: Erdenebayar/Pixabay

In the preceding article, we explored our own experiences of being on the receiving end of medicalized language, and discussed some of the reasons that professionals might be inclined to write in a pathologizing tone, rather than from a place of acceptance, despite societal shifts towards conceptualizing autism as a natural human variation, rather than a condition to be corrected or cured. This article is provided as a companion piece, with a focus on practical suggestions for professionals when writing in a professional context.

Moving beyond the medicalized model: Practical examples of ways we can reframe language

For many professionals, it may seem impossible to step outside of the medical model and write from a place of understanding, empathy, and shared humanity while also communicating relevant information.

Below is an illustrative example of how this might be achieved. The first paragraph uses a highly pathologized framework, while the second is written in a way that honors and validates an individual’s lived experience.

Karen demonstrates severe deficits in her ability to regulate her emotions. She frequently has meltdowns which have resulted in severe marital discord; her husband has demonstrated great patience and loyalty by remaining in the relationship with her. She has a history of failed romantic relationships and is also unable to maintain friendships. Her severe sensory processing disorder contributes to the marital discord, as she demonstrates unreasonable and controlling behaviors around noise level, household smells, and artificial lighting. She demonstrates frequent maladaptive behavior, including odd body posturing and inappropriate grunting noises. Intervention will focus on teaching Karen to better control her emotions, develop her social skills so she can reduce controlling behaviors and improve her marriage, help her to develop a better tolerance for sensory stimuli, and reduce the frequency of her maladaptive behaviors.

The above paragraph can be rephrased in order to promote positive self-concept and acceptance:

Karen demonstrates a depth and intensity in the way that she experiences her internal and external worlds. She feels her emotions very deeply, which can be misconstrued as overreacting by people who don’t experience their feelings with the same depth or intensity. Karen has found that stimming (i.e., self-stimulatory behavior) can help her to calm and soothe herself; she will often move her hands and fingers in specific and rhythmic ways, or make noises that result in pleasing vibrations in her throat and mouth. She has a long history of being misunderstood, and is yet to find friendships that have felt fulfilling or supportive. She hopes that her newfound understanding of herself as Autistic will help her to develop genuine and fulfilling connections. She has been married for just over 12 months, which has been a tense and tumultuous experience for both Karen and her husband. It is recommended that Karen and her husband receive support to better understand each other’s particular ways of experiencing the world, to develop spaces at home where both parties can find sanctuary (together and separately), and guidance to support each other in ways that feel genuinely supportive.

Balancing regulatory language with respectful practice

Historically, the evolution of language can move at glacial speed, but we have also seen rapid uptake of new terms entering the common lexicon in line with changes in the world around us. While language used in research or governance spaces can appear steadfast and unmoving, when we each start to make small changes in the language we use, over time, we see these changes gather momentum and manifest across clinical, educational, and research contexts.

Of course, there are times when we need to write in a certain way in order to achieve a desired result. For example, in Australia, autistic individuals comprise the largest group of participants who access support via the National Disability Insurance Scheme (NDIS). In order to assist people to secure the supports they need, professionals must align their language with that of the NDIS to ensure that reports are interpreted correctly. This means focusing on “deficits," “risk," “problematic/maladaptive behavior," “severely delayed” areas of development, and examples of tasks the person is unable to complete.

In this context, softened, respectful language can easily be misinterpreted by the powers that be as a reduced support need. In such instances, it is important to ensure the autistic person and/or their loved ones understand that the report is written in the language required by the NDIS to maximize the likelihood that the person will receive adequate support. Giving examples of how the same information could be communicated more gently, and how such gentle communication might have an adverse impact on funding, can be very helpful to help people understand that the harsh language is not a reflection of them, but rather the rigid way in which a larger system operates.

This challenge also presents in the formal diagnostic context whereby clinicians are bound to the terminology set out by current diagnostic criteria and must make judgments within specific diagnostic frameworks. While it might be ideal to disengage from the medical model and describe autism purely in terms of the individual’s experience without reference to diagnostic criteria, this has implications within societies that have support structures built upon the medical model. 

Stepping entirely outside of these diagnostic frameworks would potentially undermine the very reason for conducting the assessment and writing the report, as a diagnostic report that does not mention a diagnosis nor any diagnostic criteria is unlikely to assist with accessing post-diagnostic supports. In such instances, the choice of language in unpacking and discussing the person’s experience becomes increasingly important. While a clinician’s hand may be forced to produce words to describe “deficits” and “disorders” to comply with diagnostic requirements, this style of language need not set the tone for the entire diagnostic assessment and subsequent report. Instead, we can reflect on the “essential” medicalized language required within the context of a formal diagnostic assessment, and ensure that all other language comes from a place of acceptance, understanding, and respect.

Language and communication are a defining aspect of humanity and, whether we realize it or not, the language we use is highly reflective of our own beliefs and perspectives. It is vital that we reflect critically on our own use of language and whether it aligns with our beliefs and values, rather than simply following professional conventions without question. When working within systems that are much bigger than us and neither flex nor bend, we can exercise our agency as individuals to make small differences in the lives of autistic people around us. This is where small actions can have large impacts.

Simple acts of acknowledging an individual’s positive attributes, using language that affirms a person’s worth rather than diminishing it, and openly explaining the reasons for (and hesitations about) using medicalized or deficit-based language, can assist in reducing self-stigma, developing positive self-concept, and promoting positive mental health and well-being.