The Struggle Bus is real. Oh shit, can I say that? Today’s conversation takes Angela and Molly into the DSM 5 game of Autistic “levels” of support. Where they will talk all about the importance of wordshow outdated words need to go (maybe)why functioning labels (in all forms) can fly a freakin’ kite and also we see the point of those who say they should stay. Join the conversation and help us find word solutions for ALL members of our Neurodivergent Community.
It’s All a Game
“…let’s play a video game called DSM-5” (Angela, quoting embrace-autism.com 8:17). Molly and Angela talk about how Embrace Autism discusses the 3 levels of Autism as presented in the DSM-5. The author, Eva Silvertant writes, “moreover, the three levels probably have little bearing on the quality of life of autistic people.” As we continue the conversation navigating through the linguistic sea of “non-verbal” and “non-speaking,” Molly brings up an important point. There is this myth that non-speaking equates to a lack of ability or intelligence, “which is utter bullshit” (12:01). Angela points out that ultimately, “everything is context dependent” and they discuss how levels are functioning labels under a different name. Although we love how levels are explained through gaming, we agree with Silvertant that this is NOT at all a game, but has serious impacts on people’s lives.
Can There Be a Newsletter?
After a conversation in the beginning about the etymology of “the struggle bus is real,” Molly and Angela run into other problematic terms as we delve into language use in scientific literature and research. Angela asks, “If the label is not actually indicative of the person—because it’s context dependent, right—is the science and research accurate?” (30:35). As Molly begins an important discussion that we started during our “pre-gaming” session, saying, “the comorbidities and how that influences things,” Angela rudely interrupts telling her that that word is not allowed (31:50). They later reference a couple of articles discussing this term as well as others that are causing division in and out of the community. Molly says, “I don’t know how any of us are supposed to fucking keep up unless we’re constantly, every morning, checking what words we are supposed to use or not.” And that is preferable to being interrupted mid-thought!.
Moving Forward
Quoting Lawrence Carter-Long, “it doesn’t matter much where the words ‘disabled’ or ‘disability’ are placed, as long as they are used” Molly and Angela move into how our personal experiences and interacts inform the words we do or don’t use and how we feel about others’ use of those words. Angela brings up a recent article which says that science needs terms like “impairment,” “comorbid,” and “disorder” in order to be quality science while a response article published 2 days ago disagrees saying that the research can be high quality without using ableist language (41:16). Angela and Molly each have their own responses and opinions about that but they agree on one thing. We need to “have the conversation as we are moving forward. Not in place of moving forward” (55:34).
References
- Stimagz*: https://www.stimagz.com/products/stimagz-12?ref=drudgeryanddreams
- Coupon Code = DNDDSTIMAGZ for 15% off your entire purchase
- A full semantic toolbox is essential for autism research and practice to thrive
- The Neurodiversity Approach(es): What are they and what do they mean for researchers?
- Response to Singer et al article – Anti-ableist language is fully compatible with high-quality autism research: Response to Singer er al. (2023)
- Profound Concerns about “Profound Autism”: Dangers of Severity Scales and Functioning Labels for Support Needs
- Outdated Autistic Terminology Companies Should Avoid Using (And What to Use Instead)
- Embrace-Autism – The levels of the DSM-5
- ‘I am not ashamed’: Disability advocates, experts implore you to stop saying ‘special needs’
*Stimagz – this is a referral link. The podcast will receive 20% commission on purchases made through the link and the user will receive 15% off the entire purchase with the coupon code DNDDSTIMAGZ
