As the COVID pandemic wanes, many of us are afraid that the social and medical systems improvements that were essential at the height of the pandemic will now be cast aside as relics of a desperate time. But for the disabled community, many of these innovations gave them access to care in a way they've never experienced, and most aren't ready to give that up just yet.
As we move forward into what we hope is a new era of medicine, we've established an expectation of access to care. Unfortunately, for the autistic community, that expectation is unlikely to be met by our medical system, at least in its current form. But there are solutions, if we understand the needs a solution needs to address.
Autistic people desperately need holistic care that addresses their physical health, but also the barriers to health that are encountered when living in a world that isn't built for them. Medical visits can't be limited to simple transactions around symptoms and diagnoses. There's a much bigger group of issues that need to be routinely addressed with autistic patients. Unfortunately, current fee-for-service rates don't reimburse for this kind of interaction. For primary care providers, who already struggle to make ends meet, there is a strong disincentive to providing this kind of care. And as Dr. Zubin Damania (AKA ZDogg MD) frequently says, incentives work.
Classically, autistic people would be considered a low-context culture. The autistic culture largely values direct, unambiguous communication without relying on nonverbal cues like tone of voice and body language. But like most aspects of autistic culture, this is a gross oversimplification.
Trust-based relationships are essential to autistic people. This is not because of any particular value on collectivism, as in high context communities. Instead, it's a matter of survival. Particularly when viewing the physician-patient relationship through the autistic lens, having a relationship based on trust is quite literally a matter of life or death. Autistic people are grossly underserved by the medical community and are often misunderstood when they are able to access care.
There's an appallingly long list of autistic children and adults who have died because their neurotype was a barrier to care. While I can't prove that having a solid, trust-based relationship with a primary care physician would have saved their lives, I know that my input into my patients' care invariably changes the way that other providers interact with them.
But building those relationships takes time and energy. And it requires continuity of care with a single provider who can build trust over a series of relationships. Providers who are willing to make that effort deserve to have their effort fairly compensated.
So how do we fairly compensate willing primary care physicians who are looking to build relationships with autistic patients, but also need to keep the lights on? One proposal has been to designate the autistic population as a medically underserved population.
But wait. Isn't that a geographic designation?
Actually, no. Health Professional Shortage Areas can be geographically designated, but also may be based on an underserved population. The autistic community would qualify as an Exceptional Medically Underserved Population because there is a unique barrier that prevents access to care - their neurotype.
The MUP designation would provide a least a bit of compensation for the time and dedication of primary care providers who want meaningful relationships with autistic people. And a healthy autistic population benefits us all.