Working with the autistic community (or is it the “community with autism”? — hold that thought!!!) the past 3 to 4 years, I still get quite conscientious about using the right terminology when addressing the community or topic. I certainly don’t want to offend anyone, but even with the best of intentions, everyone knows using the incorrect word choice can be damaging. Given that in 2016, 90% of school-based SLPs reported serving students with autism spectrum disorder (ASD), and SLPs in all other settings (early intervention, private practice, medical) report serving clients with ASD (ASHA, 2016), it’s important we try to get to the bottom of this.
I recently read an informative opinion piece by Donaldson et al, (2017) that I thought provided a good framework on this topic (read the full article here).
First of all, if you’re anything like me and you think you’re the only one experiencing mini-panic attacks when attempting the most politically-correct/least offensive word choice mid-conversation, you’re not alone. Kenny et al (2016) found that:
“Members of the autism community–autistic people, their family and friends and broader support network — often disagree over how to describe autism.”
There are currently two main schools of thought on autism and, really, on disability in general:
- Medical model — This model espouses a deficit-based perspective on ASD, with treatment aimed towards “normalization” and elimination of symptoms. This approach is particularly common with service providers.
- Social model — This model is guided by the perspective that when discriminatory social mechanisms are removed, disabled people can be independent and equal in society, with self-determination.
From the social model stems the neurodiversity perspective of ASD. Supporters of neurodiversity view autism and other neurological conditions as natural differences, not disorders. The focus of an individual’s identity is shifted from “disorder” to that person’s unique strengths, challenges, and differences. The following highlight some key differences between the medical model and the social, neurodiversity model:
- Autism viewed as a negative aspect of identity → Autism viewed as a positive aspect of identity
- Funding towards etiology and remediation → Funding towards improving the quality of life of people with autism
- Elimination of symptoms → Embracing the uniqueness of each individual, and capitalizing on one’s strengths to overcome one’s challenges
The neurodiversity movement has ushered in a new way of approaching autism and, with it, new terminology to think about and seriously consider using:
- The “D” in ASD — Some think that “disorder” in ASD should be changed to “difference” or “condition,” citing that the term “disorder” includes a negative connotation that something is broken. While the terms “difference” and “condition” still imply that there is a biomedical diagnosis, these terms are preferred because they allow for areas of strength as well as areas of difficulty.
- Identity-first vs. Person-first — It is standard in the field of SLP to use person-first language (“person with autism”), but the truth is that many people in the autism community prefer to use identity-first language (“autistic” or “autistic person”). This article cites a 2016 survey of the autism community in the UK, in which 61% of autistic individuals, 52% of family members/friends, and 51% of parents favored the term “autistic,” as opposed to only 38% of professionals.
- “High-functioning” and “Low-functioning” autism — Many advocates among the autism community have discontinued using any functioning terms for a few reasons: 1) If you’re termed “high-functioning,” often your needs are dismissed. 2) If you’re termed “low-functioning,” often your strengths are dismissed. 3) An individual’s “functioning” level might fluctuate depending on the task, the day, or stress levels.
In conclusion, word choice is important. Which is why we should a) continue to educate ourselves about the latest concerning the neurodiversity movement, and b) familiarize ourselves with hearing both person-first and identify-first language within professional contexts. By reading this blog entry, you’re off to a great start! At the end of the day, we, as professionals (and more importantly, as decent human beings), need to listen to and respect each individual’s right to self-identify, which means following the preferences of the individuals and families we serve and partner with.