Resource Roundtable: More Than Words report
Recommendations for improving communication with autistic patients in healthcare settings
“I wish I had been better at describing pain. My spinal cord injury was missed because I didn’t know how to tell the doctors it hurt. I just thought the chairs were really uncomfortable” – Jamie + Lion, in More Than Words
Each month, in these Resource Roundtable posts, my aim is to highlight and share with you one free resource related in some way to neurodivergent thriving.
This month’s resource is something that’s very close to my heart indeed: the More Than Words: Supporting effective communication with autistic people in healthcare settings report:
The idea for this report essentially came out of my PhD research – looking at the communication breakdowns that often seem to occur between autistic and non-autistic people. I’d been reading a lot about the ‘double empathy problem’: the idea that communication shortfalls between autistic and non-autistic people are in fact a two-way problem (not an autistic ‘impairment’). Both parties can make changes to meet better in the middle (though, it often falls to the autistic person to make the efforts…).
The more I also learned about the significant barriers to healthcare (and good health) that autistic people face: the more it seemed like some autistic-led, research-backed guidance might helpful for neurotypical / non-autistic healthcare professionals to support effective, cross-neurotype communication in healthcare settings.
“At a time in my life when I was more unregulated and more easily overwhelmed by sensory stuff, I used to ‘shutdown’ all the time and lose my ability to speak. I’d have the words in my head but nothing would come out, or what did come out would be slurred and not make any sense. I’ve lost count of the hours I’ve spent hidden in a public toilet cubicle waiting to get my words back…” - Gemma (me), in More Than Words
Over several months following my PhD, with the funding support of the Economic and Social Research Council, a group of 17 stakeholder collaborators came together to reflect on gaps in healthcare communication: with the aim of developing some key recommendations for best practice that could be used at the basis of reasonable (or anticipatory) adjustments.
Our group included:
· autistic healthcare users – including one non-speaking and one semi-speaking person
· autistic healthcare professionals, researchers and medical educators
· some non-autistic health professionals / NHS strategic leads.
“Myself and others that experience verbal apraxia describe it as - your brain is saying, do this, and your body is doing something you didn’t even predict or want to do. For example, an autistic with significant apraxia may want to say “I really don’t want to be here now” but instead will come out with ‘give me Pringles!!’ or they might end up having total block of speech production and instead scream and jump onto a table” – Helen, in More Than Words
Together we developed a free, 18-page report, which you can currently access via NHS England, here.
In it, we introduce the context of the healthcare inequities that autistic people face, then provide detailed sections for each of our ten key recommendations – explaining key terms and linking to the literature. The fantastic cover artwork is by one of the collaborators, Jon Adams.
Please feel free to download and share widely!
Some people have found it useful to share a copy with their GP or healthcare provider.
I’ve not quite cracked the tidy, beautiful image carousel situation on Substack… but for those among you who prefer your information visually presented, here are are the ten recommendations (click to read them larger / alt-text included):
The structure / a monthly posting map
If you, like me, thrive with predictability - don’t worry, I’ve gotchya:
This is the third week of monthly regular posts.
Every third week will be a Resource Roundtable post, like this. You can read last month’s post, sharing the NDTi’s "It's Not Rocket Science" report, with recommendations for impriving the sensory environments of hospital settings for neurodivergent inpatients, here.
Every fourth week will be an episode of the Beyond the Abstract mini podcast series – breaking down one piece of academic research on neurodiversity-related topics. You can listen to there, here.
The first kind of monthly posts will be a long-form essay. You can read all the essays, here. This month’s essay:
The second monthly post will be an episode from mini-pod / audio note series Echoes from the Neuroverse, where I’ll be reading aloud an article I’ve written elsewhere, or introducing a podcast and sharing a link to the full episode. You listen to these, here.