Today’s edition of the Spectrum newsletter collects four previously-published stories about receiving (or not receiving, as the case may be) healthcare as an autistic adult, one of which includes a section on AASPIRE’s Healthcare Toolkit, which I encourage people to use.
I had my own accommodations report, generated through their toolkit, included at my provider as part of my medical records. I don’t know which of my various doctors has read or even noticed it, but it’s useful and important to have it on file should any problems arise, since I’ll be able to point to its existence and place the onus back on any doctor who doesn’t provide requested accommodations.
Nicolaidis and her colleagues tested the tool kit in 170 adults with autism and 41 primary care doctors in 2016. The participants reported that communication with their doctor improved one month after they received the tool kit. The next step, Nicolaidis says, is to see if the tools can be incorporated into primary care practices, as opposed to something individuals take to their physician. To find out, she’s collaborating with three large healthcare networks, two in Oregon and one in California. (Croen, at California’s Kaiser Permanente, is a collaborator.) In January, they launched the two-year study, which includes around 220 people at 12 clinics, about half of which will use the tool kit.
“January”, in this case, refers to January 2018, which must mean that this two-year study has concluded that particular phase. I’m guessing that we should expect a paper to pop up in Autism in Adulthood at some point; I don’t know what the turnaround time typically is for analysis and paper submission.