We’ve noticed that many of our autistic community members dread April, with its onslaught of crappy autism messaging being ignorantly promoted as “hope.” We’re not fans, either.
Instead, we’ll be promoting Autism Acceptance by publishing April Accommodations—meaning adjustments that other people can do for the autistic people in their lives. (For the flipside, as in things that make life harder for autistics, please see our Autism Checklist of Doom.)
For our first April and Accommodations post, we have insights by Anne Borden King, who wants health care access options besides using a phone.
I’m #ActuallyAutistic and a co-presenter for the Autistic Health Access Project in Toronto. Also, I
battled cancer in 2020 and 2021.
Something that would make my life easier would be accessible virtual health care; in other
words, NOT by phone.
Here are two very different experiences I had with virtual care. I first received news about my
cancer treatment plan over the phone, in a call I’d waited 2+ hours for. I did not take in all the
information and then suddenly—the call was over. By contrast, my second provider scheduled a
Zoom call at a specific time, where I had the space to ask questions and write things down
without a rush. This was so much more useful to me as a patient, not to mention more positive.
The reality is, phone appointments do not work for many autistic people. Some have auditory
processing issues that make the phone inaccessible for important medical news or questions
about treatment. Some are non-speaking and communicate via AAC methods that aren’t
compatible with the phone. Interestingly, a 2022 study in the British Medical Journal (Doherty,
et al.) found that 62 percent of autistic patients reported that they had difficulties booking a GP
appointment by telephone, compared to only 16 percent of non- autistic respondents. (This will
be no surprise to any autistic people reading this!)
In the study, adverse outcomes when autistic patients’ communication access needs were not
met included: untreated physical and mental health conditions; not attending specialist
referrals; and requiring more extensive treatment or surgery due to late presentations.
Autistic adults reported a preference for online or text-based appointment booking and the
opportunity to email their doctor in advance, explaining their health problem. The study also
observed that sometimes virtual care is not enough and people need in-person appointments.
The research team noted: “Some patients report being very unwell with conditions that would
be expected to cause significant pain, but are dismissed as they do not describe pain in a
pattern that a doctor would traditionally recognise. As such we would suggest a lower
threshold for face-to-face consultation.”
In this era of virtual care, health care has many tech tools (Internet, Zoom, Gmail) at their
fingertips. Different platforms work for different people. It’s time for all providers to keep all
options open and ask patients what they need for accessible health care.
