August 16, 2024
Why autistic people can’t get healthcare
I’m describing here some events that have taken place over the last three months or so. The following is more or less what I was going to say to one of my doctors at a follow-up appointment I didn’t get to have recently, because my community health clinic’s air conditioning was broken during the brief interval I had appointments scheduled between returning home from one regional gig and leaving for another, about the test results I was supposed to have by now but do not, because I think it’d be worth it for him to hear it from me in person why I do not.
Because the reasons why I do not are very directly relevant to why my stress and anxiety levels are what they are.
To make an incredibly tedious story as short as possible, I first went through 15 phone calls attempting to even get the appointment for this imaging test scheduled in about four rounds of Mt. Sinai Morningside claiming they didn’t get the referral, my clinic sending it again, only for Mt. Sinai to claim they didn’t have it, culminating with a representative from my clinic getting on the phone personally with Mt. Sinai Radiology to try to figure out what was going on, and calling back to let me know that they definitely had it now.
This surpassed the previous record held by Northwell Health, with whom I once traded 14 phone calls in order to not have this very test done (followed by two more in order to speak to someone at the executive level at Northwell about what exactly had gone wrong).
That time it wasn’t even over the referral—I actually had an appointment confirmed–it was over the reception desk staff’s inability to understand a question about a Covid screening form which I was alerted by text message I should be receiving, but had not received due to a typo in my e-mail address on file.
“We don’t do Covid tests here.”
“We don’t require Covid tests.”
“We don’t screen for Covid.”
“I don’t understand what you’re talking about, we don’t do that.”
…and a couple of rounds in which I was transferred to entire other facilities or even an ER reception desk, trying to get someone to fix my e-mail address in the computer system so that I could be sent a form without which I would not be allowed to have the appointment, before I just canceled it.
Ironically, I’d asked to be sent to Mt. Sinai Morningside this time around because I wasn’t treated like this last time after I’d finally given up on Northwell and asked to be sent somewhere, anywhere, else.
Anyway. So back in May, I finally get this appointment made for the week I’ll be returning from an out-of-town gig in July. And two months go by. During which I actually turn down another gig in part because this set of appointments has been such hell to get made in the first place, I don’t even want to think about trying to reschedule them.
So then the morning of Friday, July 5, about 9:30 AM, I get left a voicemail from Mt. Sinai Radiology to the effect that my insurance pre-authorization hadn’t come through yet, so my appointment was being rescheduled for July 19, if that was okay.
It wasn’t okay.
The phone calls I spent that morning alone trying to get it sorted out took me up to 25 with no luck, and the fact that it was Friday of a holiday weekend, during which, in addition, I had multiple two-show days before which I was going to be traveling back home from out of state, made the chances pretty much zero that it was going to get worked out in time.
I sent an e-mail update to the patient services representative I’d already been corresponding with to the effect of all of this—that no one in the prior two months had told me anything about needing a prior authorization or there being an issue with my insurance, that if they had, I’d’ve been able to get on top of it earlier in the week at least.
But now it was the Friday morning of a holiday weekend and no one was picking up the phone at the clinic, and there was no way I was going to manage to get my doctor on the phone with my insurance to fix this.
I was told at least twice, by different receptionists, that “if it’s an emergency you can just go to the ER.”
For an appointment I’d had scheduled for two months that was being canceled out from under me purely because of someone else’s negligence.
The patient representative had a supervisor from Radiology call me personally to try to figure out what had happened and again, long story short, but it turned out that not only was it not true that my prior authorization just hadn’t come through yet, but it had never been submitted; there was no insurance even listed for me. And to the best of my understanding, because someone saw no insurance on file, she assumed the prior authorization was the problem and rescheduled my appointment.
No one had asked, I said, or I could’ve given them that information.
The supervisor took my insurance info and commenced trying to get the authorization.
Long story short, but I’m now up to 29 phone calls on this, I have a letter from my insurance confirming this is a covered procedure, but the authorization number still isn’t showing up in the Mt. Sinai computers, and I got yet another phone call from a representative to tell me the procedure hasn’t been approved so my appointment is being rescheduled again.
To a date by which I will not only once again be out of town for work, but will have different insurance.
And this is what everything is like.
This is virtually every time I try seeking the most minor healthcare more complicated than a simple office visit. This is always what it is like.
It’s when I got wrist surgery for a ganglion cyst a few years ago that had to be rescheduled four times—because I was scheduled for a date I couldn’t do and had specifically said I couldn’t do, because I was about to fall into an insurance donut hole and they wouldn’t schedule the surgery within one week of me regaining my insurance or something like that, because the surgery center waited too long to tell me I had to have somebody to take me home, because of conflicting information about whether I’d be under local or general anesthesia or local anesthesia with sedation (this was actually like five micro-rounds by itself but I’m trying to be concise here), because the surgeon who was finally scheduled to do it left the practice a day before my surgery date.
It took me fully six months to succeed at scheduling a surgery that ultimately took 30 minutes to perform.
It’s the NYU Dental School clinic twice in a row failing to tell me that because I hadn’t been seen in over two years, I’d be forced to start their new patient intake process over again from the beginning and therefore not get a cleaning on the day I’d had scheduled, but instead go through a three-hour interview and come back again in a week. And being willing to give no leeway whatsoever to the fact that part of the reason I’d had to wait so long was that the last time, I’d had that process interrupted by the Covid pandemic.
It’s the last time I had this test! Which, even after I successfully had it at Mt. Sinai, no one bothered to call me about the results for four months and I had to call multiple times just to get them tracked down!
(My doctor at the time was very apologetic that that had happened, and said “obviously someone would’ve called you if something were seriously wrong,” but no, it is not obvious that someone would’ve called me if that were the case!)
And it all just makes me feel punished for even trying to take care of myself.
I’m well aware that I should get a mammogram. I’m well aware that I should get a colonoscopy. I should probably see a cardiologist and an endocrinologist and an ENT, but how? When any one of these things turns into this?
(I probably can and should go see my orthopedist again, they tend to be easy to at least get an office visit with even if their surgical scheduling department is a three-ring circus. But I also have to wait till I’m back on the Equity-League insurance and also be in town and also not be in rehearsal for a production because that so severely constrains my daytime availability.)
Seriously, how? I gave up days’ worth of mornings before rehearsal and lunch breaks to deal with Mt. Sinai Radiology Chapter 2 Part 1 as it is—to not have yet had that appointment. I have had two separate people in this saga tell me “well if it’s an emergency you can just go to the ER,” but am I honest-to-god just supposed to go to the ER for everything? I thought the point of having a doctor and having insurance was that that specifically is what I’m not supposed to have to do?
What if something serious or life-altering is actually wrong? What if I actually need surgery for which I do have to be under general anesthesia and therefore need someone to get me home? Plan to stay with me for 24 hours?
What if I just want someone there for me?
How many times (as detailed in this post) can I ask a local friend to take off work, give up income, possibly have to find or hire their own replacement, disrupt their own lives like that, only for the procedure to not actually happen before they lose patience, or just the ability to rearrange their lives endlessly?
How long before I do? How long am I supposed to?
How is someone whose language, auditory processing, executive functioning, or tolerance for phone calls, anxiety, or unpredictability, are even slightly more compromised than my own supposed to?
This isn’t manageable.
And this is even before we get to things like sensory issues, altered pain tolerance, paradoxical drug reactions, accessibility of healthcare facilities, and the way we’re treated once we’re there.
This is me trying to have an imaging test which is not that complicated and for which I don’t need any special accommodations or pain control, at a hospital ten blocks from my apartment, when I have insurance and a referral.
I’m terrified to find out I have something actually serious, not because I’m afraid I wouldn’t be able to cope with treatment or even of the financial consequences or that my family wouldn’t help me out financially if it came to that, but that trying to save my own life turns it into this, unendingly, and probably not successfully, that I’d just die while either waiting for everyone else to get their shit together or trying to bully someone into doing their own job, when I am the only person facing consequences for them not.
It just feels like signing up to be treated badly, and probably ultimately to have it just not matter.
And I know you don’t know what this is like, but it’s the bureaucratic equivalent of how there are so many people who literally do not hear my speech as human speech, who cannot register the fact of me speaking to them.
Only it’s not like just being able to go to a different bar or a different coffee shop when that happens!
You weren’t out of line, strictly speaking, to ask if I’d be interested in therapy. Would I like someone just to unload all of this to in person?
Sure!
But will my trying to get therapy about this mean that it stops happening?
Or am I just signing up for another 15 phone calls of being treated this way?
On Thursday this week, a day before I actually wound up in the ER from, probably, severe dehydration, but that’s another story, I was fuming at home, angry from yet another round of Mt. Sinai being unable to figure out what on earth is even going on, and also the appointment I was supposed to have with you got canceled on me for the second time in two weeks for reasons that I realize were completely out of your control, I started thinking “You know what I should do today instead is go get a tattoo. That sounds great, actually,” before I started scrawling this instead. (And it turned out to be a good thing I did not decide to just go get a tattoo because, again, it turned out I was critically dehydrated, but that’s another story for another time).
But I had a lightbulb moment about why tattooing seems to function so effectively as mental healthcare for so many people, probably… Is that every single tattoo artist or studio out there is almost certainly better at keeping appointments, giving clear pre-appointment and aftercare information in a timely manner, and being upfront about costs and expectations, than every doctor’s office or medical practice in existence.
And that stuff is just a huge component of being made to feel like your time and comfort and peace of mind matter when something is happening to your body.
I know it also has immunological effects and triggers endorphin release and stuff, but.
The fact that once you walk in to a tattoo studio, talk about what you want to accomplish, put down a deposit and get an appointment on the books, then barring an act of God or civic catastrophe, that appointment is happening.
Anyway. Sorry. I know that you care and you’re trying and this isn’t your fault but I am so tired of this.
And I will probably at some point just go get a tattoo over it.
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