how you can help–covid update

To my esteemed readers:  In this challenging time, I would like to encourage you to seek out and donate to your local food banks if you are able. You can go to this website to locate one in your area. Thanks! -TGA

Click here to read TGA’s article in The Washington Post

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The Glass Room

My latest blog post appears on the Neuroclastic online magazine! Click here (or below) to read it.

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The Last 5 Days, or How Not Treat an Autistic

These events took place from Monday, October26th to Friday October 30th.

Forward

For the last two months, my search for a pain professional who accepted Medicaid and was willing to work with my autism medication regimen had resulted in my being disbelieved, belittled, insulted, and dismissed at every turn. During this time, my pain was poorly managed—if at all—and I dealt with constant anxiety. By mid-October, I was down to rationing the last few doses of the only pain medication I had left that didn’t interfere with my autism prescriptions.

The light at the end of this dark tunnel was a long-overdue cervical fusion surgery scheduled for Tuesday, October 27th at 11 AM. The surgeon would be able to prescribe medicine to handle the post-surgical pain, with the promise of reduced pain over the long-term.

But that isn’t what happened. This is what happened instead.

Monday, October 26, 2020

The day before my surgery was a mad scramble of emails, laundry, and housekeeping to prepare for being out of commission for a few days. My sister, TNC [Takes No Crap] Ape, had come into town Saturday to be my pain advocate and was bustling around on my behalf, learning where things were, how things were done. Captain Ape arranged to have a break from work to be our chauffeur. We had planned and for prepared everything, down to the smallest detail, but I was still so anxious I couldn’t sit still. “I have a bad feeling about this,” I confided in my sister, in Captain Ape. They offered reassurances that, while appreciated, were not able to quell this burgeoning dread lodged in my stomach.

My anxiety wasn’t completely unfounded, although I didn’t realize it at the time. A lack of notification from the surgeon’s office that my surgery time had been changed from 11 AM to 7:30 AM, which I never would have known about if the nurse hadn’t mentioned it during pre-op testing, set me on edge. Distracted and tense, I forgot I had a cell phone (actually, this happens a lot) and missed a late evening call and voicemail from my doctor’s office.

Tuesday, October 27, 2020

The day of the surgery, Captain Ape dropped off TNC and me at the hospital at 5:30 AM, two hours before the surgery, as instructed. But when we checked in at the COVID testing station, they couldn’t find me on the list of admissions. They let us through anyway, but upstairs in the surgery waiting area, the nurse escort for surgical patients also did not have me on her list. She told us to wait there while she made some calls.

She came back fifteen minutes later. “We couldn’t get a hold of your doctor” she said apologetically. After a pause, she added. “I’m sure he’s on his way.” I knew she was lying, but I clung to the hope that she was right. TNC and I sat down to wait.

After a half an hour, the nurse let us know she found me on the list—for 11 AM. I was too angry to respond and couldn’t stand to be in that waiting area another second. I abruptly got up and strode out, leaving my sister scrambling to catch up with me at the elevator. “So we’re leaving?” she asked.

“Hell yes, we’re leaving,” I snapped. Once we got outside, my sister called Captain Ape to come pick us up so we could wait at home until it was time to come back.

It was only then that I discovered the missed call and voicemail from the doctor’s office the night before. The message stated that the radiologist had “filled out a form incorrectly” and they had had to resend it, and they had moved my surgery back to 11 to give the insurance company time to send back confirmation.

I leapt from annoyed to furious, about the pointless loss of the three hours’ sleep, with myself for not checking my phone. I remembered I had assumed that no phone calls of importance would show up the day before my surgery, or at least, nothing that couldn’t wait another day or two. Changing my surgery time the night before? Yeah, no, not on the list.

We got back to apartment around 7 AM, but I couldn’t get through to the surgeon’s office until they opened at 8. Once I did, the surgeon’s assistant repeated what was on the voicemail, saying the radiologist had messed up the form, that they had corrected it and sent it back, and that they were just waiting for confirmation from the insurance company to proceed. I was still to plan for surgery at 11.

An hour went by. I called my surgeon’s office again but no one answered. I left a message in which my tone of voice was not well managed. Captain Ape had slipped out at some point; he returned with Starbucks. I wasn’t supposed to have anything to drink, but I was thirsty and my willingness to cooperate had declined precipitously. I gratefully accepted the decaf Americano (my favorite) and sipped on it while I waited. Another hour passed.

My call was finally returned a little after 10 AM. This time, the assistant admitted that, rather than a form mix-up, the insurance company had rejected the procedure as not medically necessary, and what had actually happened was that they had entered an appeal but hadn’t heard back. She insisted that the preauthorization had been approved “this past Friday” and that none of this “made any sense.” She then asked if she could reschedule my procedure for two or three weeks down the road.

I had been planning for this surgery—no, I had been counting on it—for over a month. I was looking forward to a few days off from worrying about work, about school, about taking care of the apartment and the pets, about where my next prescription was coming from. It was all going to be taken care of for me, by TNC and Captain Ape, by the surgeon who could hopefully fix my neck and prescribe post-surgical pain medication. There was even a possibility that, once I healed from the surgery, my pain would be lessened significantly.

And then, less than an hour before it was supposed to happen, it was all yanked out from under me, just like that, in a single instant. It was so sudden, so devastating, I could barely breathe. I wanted to scream, to cry, to hit something, to throw something.

The surgeon’s assistant then had the audacity to ask if they could just “bump” my procedure to a few weeks from now, like moving a surgery was as simple as changing a meeting date in your phone.

“No, I can’t do this in a couple of weeks.” I snapped. “I already had to push back work and school obligations to make room for this. My sister had to put in for time off over a month ago. If we don’t do this now, I won’t be able to do it until December.” My control over my emotions, already tenuous, slipped even further. I struggled to keep the tears from coming.

The surgeon’s office had been lying to me since the day before, stringing me along, until the god from the machine they were expecting failed to show up. I was expecting an apology, some accountability, maybe even some sympathy. None was offered.

“Well, if we could do Friday, would that be OK?” the assistant asked. I mouthed “Friday?” to TNC Ape, who nodded, and told the assistant that, yes, I could make that work.

“Well, we’ve appealed the decision and we’ll call you back to reschedule as soon as it goes through.” she said.

I was unable to keep the tears back any longer. “OK,” I mumbled softly.

After a long pause, she said “Sorry about all this.”

I was afraid if I tried to talk I would start sobbing in earnest. “Mm-hmm.”

“So we’ll call you back soon.”

“Mm-hmm” I hung up and fell apart.

My sister came over to the couch. “What’s going on? What happened?”

“The surgery isn’t happening.”

“Isn’t happening today or isn’t happening ever?”my sister asked.

“I don’t know. They don’t know. Nobody knows.” I don’t remember what she said after that; I was crying too hard to hear her.

After a few minutes, I crawled into bed, my phone next to me on the pillow on the off chance that the surgery still might go through, and cried myself back to sleep.

The phone rattled me awake a little while later. “Hi there, this is the __________ hospital. Is this Ms. Ape?”

“Yes.”

“We just wanted to let you know that the insurance rejected your claim for being out of network.” Wait, what?

“No, my doctor’s office told me it was because it wasn’t medically necessary.”

“Well it says here you’re out of network. That’s all we know, ma’am.”

“OK. Thank you,” I responded. I hung up and went back to sleep.

I slept for a few hours, ate, and started making phone calls. I called my Medicaid caseworker, who was sympathetic but said there was nothing she could do—they only managed eligibility. They didn’t have any control over whether the provider authorized something or not.

I moved on to the insurance company’s customer service line, which was littered with menus for things I didn’t need and forced me to listen to their COVID preparations nearly a dozen times. The system kept dumping me back to previous menus or disconnecting me as I searched for the right options. The first person I got a hold of at told me I was in the wrong department and that I had to call back. Finally, after so many failed attempts I lost count, I managed to reach a human in the authorizations department. I explained what had happened, again fighting off tears, and asked if there was anything I could do to move things along.

The person on the phone pulled up and scanned through my account. After a few moments, she said the procedure had been rejected as not medically necessary and that it was being appealed, and that the appeal process took up to 30 days.

30 days? I forged ahead anyway. “So why did the hospital say I was out-of-network?”

“I don’t know anything about that. It just says here that it was denied as not medically necessary and is now under appeal. There’s nothing else you can do.”

I thanked her, hung up, and started sobbing again. I didn’t know who else to call, and even if I did, I was not up for yet another “sorry but I can’t help you” rejection. I gave up for the day. I don’t remember eating dinner. I don’t remember going to bed. I only remember I woke up crying in the middle of the night and that it took two hours to get back to sleep.

Wednesday, October 28, 2020

I was still red-eyed and exhausted the next morning, but after copious amounts of coffee, it was back to the phone. First, I called another surgeon I’d had a consult with the earlier in the month. He’d been kind and understanding about my condition, his office had an efficient and compassionate staff, and with any luck, maybe he would take my case and I could still get the surgery sooner rather than later. His office scheduled me an appointment for the next day, Thursday, October 29th.

As no pain medication was in the offing, I temporarily gave up on my search for a Medicaid- and autism-accepting provider and called back my original pain management practice, the one I had been seeing before I lost my health insurance, in hopes of getting enough medication to allow me to function until my surgery came through (or didn’t).

When I told the scheduler I would run out of medication before the end of the week, she miraculously found an appointment for me for Friday, October 30th. I would have to pay out of pocket, but I didn’t care. What had happened this week had left me so exhausted, traumatized, and desperate that I didn’t have any bandwidth left to think about anything else.

Thursday, October 29, 2020

Thursday, I drove to the surgeon’s office only to find out that I was at the wrong facility. “But they said it was in A_____ when I made the appointment,” I insisted weakly. Another staff member responded, “Oh, the S_______ office is also in A_____.” Notwithstanding how ridiculous that was, this wasn’t the first time something like this had happened to me; being autistic means you tend to miss “obvious” things and your assumptions are often wrong. I didn’t like it, but I was used it, and normally, I would have just handled it.

But that day, still drained from the previous days’ events, I didn’t have enough energy to deal with another setback. In fact, I didn’t have enough energy to summon any response at all, appropriate or otherwise. I just stood there, frozen, at a loss for what to say or do next. The other office just wasn’t going to happen; there was no way I’d be able to interpret a new set of my phone’s GPS instructions. Even just rescheduling felt like more than I could handle.

The receptionist saw the look on my face, or perhaps the lack thereof, and told me to wait a moment while they called the S_______ office and got the surgeon on the phone. Once they did, they relayed that the surgeon said he would not perform the surgery; he didn’t think it would help my pain, which he asserted was atypical for the type of damage I had.

Yet another rejection. My heart sank, and tears started to well up again. I held myself together—barely—long enough to thank them and get back to my car.

And then I started crying again. There was nothing else I could do. The grim reality of my situation, that the surgery wasn’t going to happen any time soon, if at all, finally set in. I sobbed the whole drive home.

Friday October 30, 2020

The pain appointment on Friday had the distinction of being the only interaction with a medical professional that resulted in a positive outcome that week. In fact, it was the only positive interaction I’d had with anyone in the medical community since before my insurance had run out three months before.

I briefly brought the NP up to speed on what had happened with my surgery. Then, I explained what had been going on with my search for a pain practice that accepted Medicaid and how dismissive those I’d tried had been about my autism. I stressed that medications that interfered with those I took to manage my anxiety and sensory sensitivity were off the table. I said that I understood that this meant diverting from usual protocols, but that I wasn’t the usual patient.

She nodded, echoed what I said back to me (another first), and scanned through my file on her laptop. “This much short-acting medication, you’re right, it’s not what we would normally prescribe, but it looks like in your case we have to throw the book out and just go with what works. For now, let’s just put you back on your regimen from before.”

I nodded. “OK. Thank you. That would be wonderful. Thank you.” She sent my prescriptions to the pharmacist and I picked them up later that afternoon.

But by then, I was completely used up. I never got those days off, from worrying, from advocating, from dealing with all the indignities one suffers at the hands of the American health care system. Instead, I’d had the week from hell followed by being unceremoniously dropped back where I was before, to a life inscribed by pain and anxiety, back to being disbelieved and dismissed, with medication that barely helped and a backlog of work.

Back into that dark tunnel, but with one difference. The light I had been working towards was gone.

Afterward

While I was fortunate to finally get back to my original pain treatment protocol, the physical damage resulting from two months of anxiety, loss of sleep, and little to no pain control, plus a week of extreme stress, was not so easily undone. My pain remained intense and unrelenting for a week and a half while the medications built back up in my system. It has been over two weeks and it is better, but it remains worse than it was before.

The psychological fallout took its toll, as well. The week after the surgery I was a zombie, unable to concentrate, unable to write, forcing myself to do my chores through a mental exhaustion that was almost palpable, and sleeping ten or more hours a night. What had happened to me was so unbelievable, so cruel, I couldn’t get past it. I hovered near tears for days, trying to process, trying to find something positive about it, and failing at both. The surgeon’s office has yet to call me back. If the procedure isn’t approved, they probably never will.

Two Weeks Later

Just when I thought the surgeon’s office could not have possibly screwed this up any worse, I got a packet a couple of days ago from the insurance company about my case, with copies of what the surgeon’s office had sent them for the preauthorization, authorization, and appeal.

For posterity, the surgeon’s office had led me to believe that the that the denial was the radiologist’s fault, and that both the denial and appeal had occurred Monday, October 26rd.

The packet, however, told a different story. The real story.

First, my preauthorization went through on Monday, October 19th, not Friday, as the assistant had claimed, and included a report of severe neck and upper back pain, an affirmation from a second surgeon that surgery was strongly recommended, and a diagnosis of encroachment leading to nerve impingement in the C5-C6 vertebral space.

The authorization did not contain any of those items, but that wasn’t the worst part. The worst part was the date, of both the denial and the appeal, as indicated by the dates on the faxes the office had sent. It wasn’t Monday, October 26th.

It was three days earlier. It was Friday, October 23rd.

The office had known about my denial since Friday afternoon and didn’t say a word to me about it for three days.

Three days. It may not seem like much, but for an autistic, three days to get used to the idea that my surgery might have to be postponed would have made such a world of difference that words fail to encompass it.

And here’s where people’s total ignorance about autism is especially poignant. Change is extremely difficult for autistics, exponentially more so than for neurotypicals. We need time to mentally prepare for changes, even positive ones. Those three days would have completely altered this experience for me. I would have been upset at first, yes, but by Tuesday, I would have been prepared for a possible negative outcome. To deny a normal person that time to adjust was already misguided, at best. But to deny it to someone on the spectrum? It was downright cruel.

As of this writing, the surgeon’s office has yet to own up to a single mistake. They changed my surgery time weeks before my surgery and didn’t tell me. The claim was denied and they didn’t tell me. The reason for the denial was due to their own failure to include the right information, and they didn’t admit to that, either. Even when they told me the “truth” about what happened, that had been a lie, too. There has been no formal apology, no sympathy for what they put me through, not a single indication that they felt in any way responsible for what had transpired.

It remains to be seen whether my insurance will or won’t approve the surgery. I went ahead and sent in a patient appeal, which included the things the surgeon’s office had left out of their October 23rd materials. Even if it does get approved, though, I have no idea who will perform the procedure. Certainly, the practice that screwed up the authorization, failed to notify me of a denial they had known about for days, and has yet to be straight with me about what actually happened, is not an organization I trust to be accountable for my surgery and aftercare.

At this point, I’m not sure when I’ll have the surgery, or even if I will have it all. And there is no next step, no Plan B. My experiences since my health insurance ran out strongly suggest that, even among the few medical practitioners who accept Medicaid patients, the number of them who actually care about Medicaid patients is vanishingly small. To most of them, I’m just a statistic, a box to be checked, someone they could do the bare minimum for so they could get back to the patients that made them money.

Even now, over two weeks later, I’m still exhausted, mentally, emotionally, physically. I don’t want to do this any more. I don’t want to be this any more. I’m tired of spending hours on the phone, having to expend energy I don’t have to perform my neurotypical persona, only to be told, over and over, by everyone I call, that they can’t help me.

And this is about more than just last week. I have endured three months of being invisible, my concerns unheard, my problems unsolved, my well-being unattended. There doesn’t seem to be any space in the world we live in for people like me. I know I should keep pushing and advocating for myself and those like me but I’m tapped out. I wish I could just sleep and eat and watch TV, and not have to take care of anyone or anything any more, even myself.

But that’s something else that won’t ever happen.

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committed

Black and white photo of man holding a large piece of tinfoil over his face.

So the latest hand-wringing over smartphones is that they remove the need for people to memorize things when using the GPS function for directions; that people don’t actually see and commit to memory their surroundings any more.

And by people, of course, they mean neurotypical (NT) people.

And I’m thinking, well, gee, that must be nice, not having to memorize things. So NTs no longer feel the need to memorize visual information when they’re making their way around. Good for them, I guess.

Aaaaaand that will never be me.

Because as an autistic, I am constantly memorizing and engaging in recall of memorized information to go about my daily business. Hygiene routines are memorized so I don’t have to rely on [nonexistent] tacit knowledge of what is appropriate. I memorize landmarks when driving along common routes (grocery store, etc.) just in case I forget whether I made a turn or not (yep, I actually do this). I teach myself to switch things on and off in my car in the same order so I don’t walk away with it still running.

I memorize things about people when I first meet them. Names are associated with objects, like pink-sparkly-phone Kate and American-flag-shoelaces George. If I don’t do this, I won’t remember the name and there is an excellent chance I won’t remember the face, either.

When I’m using my phone’s GPS, I memorize directions and how things look while I’m driving so that I don’t have to look away from the road while driving back. Autistics are lousy task-switchers. Having to interpret the information the phone is providing (silently, of course) takes away from my ability to concentrate on what’s around me. I mean, thank god my parents insisted I learn to drive thirty years ago so that I can operate a vehicle without thinking about it while I’m doing it, something that only took maybe ten or fifteen years to achieve, but I need every spare iota of mental faculty when I’m driving somewhere I haven’t been to a dozen times or more.

Interestingly, some things get memorized without my meaning to. Despite my total lack of facility when it comes to figuring out where I am in relation to somewhere else, I’m really good at memorizing where things are kept. Although faces slip by unmarked, my mind happily snaps a picture of my spice rack, the condiments aisle at the grocery store, and the reception desk at my pain doctor’s office.

I used to work at a large, multidisciplinary animal hospital with two floors and a half a dozen different storage spaces. Within a few months, I knew where every single thing was kept, even some things I never used and would never need, or those for other departments, because my mind is constantly printing and saving visual information on inanimate objects for later use. Pretty much everywhere I’ve ever worked, “ask TGA” was a common response when someone wanted to know where the spare whatevers were.

More important, my and other verbal autistics’ social skills are derived directly from memorization. We memorize social encounters and whether or not they were successful, and file that information for later use. Since intuitive social activity and communication is not an option for us, everything we do is based on some memorized social interaction or another–including those we observe between other people.

And (warning, seemingly unrelated tangent here) that’s one of the reasons I hate commercials. They show people laughing over social activities that are not funny and would not work in real life. Like stealing food from someone’s plate, or oops-on-purpose making them spill or drop something. Or, my new least favorite, writing “new friend check yes or no” on a gum wrapper and handing it to someone. I pray to god no autistic kid is watching that and thinking Oh, is that OK? Look, the other girl laughed. I should try that.

And that’s another problem. Nothing “looks” fake to us. The ways in which commercials fail to reflect real life are no problem for NTs. They take them as fiction as a matter of course, and advertising’s distortion of reality rarely rises above an eyeroll for minor annoyance.

We autistics don’t have that luxury. As I’ve mentioned before, nothing is fiction and everything is real. Commercials, posters, cartoons, memes, it all looks the same to us. Even when we understand intellectually that such things aren’t meant to be real, we can’t keep our brains from treating them as such, making it frustrating when we try and fail to employ these actions in real life and even more so once we realize how fake they are and how much of our lives we wasted thinking otherwise and trying to imitate them.

But back to memorizing. I’m never going to be in a position where I don’t have to memorize. In class the last two weeks, the articles have been all about visual rhetoric and how [non-autistic] people are better able to absorb pictorial than written information, due to their facility with central coherence.

Ah yes, central coherence. That must be nice. I have exactly zero points of reference for this, and have been unable to disentangle my frustration about it from my response to the unit overall. Basically, visual information is nothing but a wall of stimuli for me that I can’t make head or tail of.

Let me use the example of a polling place.

Poll workers are given signs to put up to make sure people move through the polling place in a single direction. They also have lots of other signs up about which table to go to for sign in, what you need for proof of ID, getting your ballot, how to fill things out, what to do with your ballot when you’re finished, and which way to exit.

A lot of these signs are simply arrows, because neurotypical people will prioritize and categorize these as the most important automatically (speaking of things that must be nice). My brain doesn’t do that. It prioritizes text because that’s what is easiest to understand. Text is only so ambiguous (although there are exceptions). So all of the signs with text on them bombard me, while those without all but disappear. And even if I do see it, an arrow by itself is not the simple guideline for me that it is for NTs. It doesn’t say to whom it applies, what it points to, or when it should be followed. And sometimes, it’s not even pointed properly, because for NTs, its mere presence is all they need.

I was a poll worker for a couple of elections back in the nineties, before I realized how ill-suited I was to that sort of work. I remember obsessing over the signs, the arrows, arguing about where they should be, suggesting tape on the floor (yeah, that didn’t happen), and overall spending a lot more time worrying about it than the other workers did. Of course, there weren’t any problems because autistics like me would pretend there weren’t even if that wasn’t the case, and, of course, NTs had no trouble at all.

Think about all of the places we see these arrows. Grocery stores, department stores, driving. Imagine what your world would be like if they were enigmas to you, if you knew from experience that they were untrustworthy. Imagine how much harder it would be to find your way around, to know where the right place–and wrong place–was to be.

That’s my life. That’s why I memorize. That’s why I can never stop memorizing.

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what happened

Photo of a woman looking at herself in the mirror, the reflection is blurred.

I swear I used to have more energy. I know I did. I never had as much as other people, but I definitely had more than I have had over the last decade or so (I’m in my late forties).

What happened?

I used to be able to work around 30 hours a week and still hang out with friends on the weekends. I used to be a performer, singing, doing community theater. I used to not need a lot of recharge time, maybe a day here and there by myself, easily accomplished with busy roommates with lives. I used to live with roommates, as in two or three, believe it or not, something that now seems completely out of reach.

What happened?

I used to be able to hang out with people for hours on end, to go to movies, to go out dancing, to have long conversations into the wee hours with peers about the nature of this or that.

What happened?

Because I can’t do any of that any more. I’m not even close. It seems like a whole other person, a whole other lifetime.

Starting in my mid-twenties, I started borrowing from my cognitive fuel tank to hide things about myself. I started using some of that energy it to decide what I was about to say, more and more of the time. Then I realized I had to change the way my face looked, so I siphoned off some more to invest in managing my facial expressions, too. The more I learned, the more complexity I added to these activities, to account for small differences in people, in situations, in location. Responses developed into full-fledged scripts. Facial expression management became more fine-tuned as I added more and more subtlety.

Once these efforts started to happen automatically, I became aware that my body language was also off, so I started paying attention to that, too, especially when I was listening to someone or interacting with a group. Head up. Don’t pick at your skin or chew the inside of your mouth. Don’t cross your arms if you don’t have to. Face your body towards the person speaking. Don’t slump in the chair or lean away from them.

A few years after that, I realized my natural eye contact inclinations were wrong, so I needed to pull more energy for that, too, making sure I looked at someone when they stopped talking instead of away from them, making sure that when I was looking at someone, I looked away every 3 to 5 seconds or so (and yes, I still do that, I still count seconds when someone is talking to make sure I don’t make them uncomfortable).

As my strategies grew more advanced, I started reaping noticeable social benefits. I stopped putting people off. At some point, I’m not sure when, I became someone people wanted to be around. I even became someone people genuinely liked. I became someone some people loved.

It felt like I had stepped into sunlight after a lifetime of being trapped in a cave. Finally, people didn’t cringe around me, or disappear after a few weeks or months. People wanted be with me, wanted to touch me, even. Asked about me if I wasn’t there. Cared about what I thought. Would go out of their way for me if I asked them to. Even better, sometimes, they would ask me to go out of my way for them. I loved the warmth. I finally felt human. Paradoxically, the more energy I invested in being someone else, the more people seemed to appreciate who I really was.

For neurotypical people to see the person I feel like on the inside, I have to translate it to make it apparent to them in ways they will understand. As I became more and more skilled at this, I reaped more and more social rewards for it, for being “authentic,” for being honest about certain imperfections and vulnerabilities, and even the fact that I was autistic and investing energy in hiding my autism. You’d think that this would have allowed me to use less energy, but those choices increased the cognitive load, deciding when to say what was in my head because it was OK in that particular situation, and when to fall back on a social script.

That’s where I am now. Being a person in our society, a likable, even lovable person, I have it down to a science. So much of this happens automatically that it actually feels kind of normal.

But that energy has to come from somewhere.

The spoon analogy, used a lot in psychology circles, contends that everyone starts the day with a certain number of spoons of energy. Those of us on the spectrum, or with other neurodivergencies, have to pull a few spoons from what would normally be expended on typical life things, like working, to manage their neurodivergence. When I started masking my autism, over twenty years ago, my strategies were pretty basic and didn’t require more than a single spoon or two.

Now, however, a lot, if not most, of my spoons go to my neurotypical performance and managing the stress of being on a neurotypical environment. It’s no wonder that I can’t work for more than a few hours a day. In fact, seen in this light, it’s amazing that I can work at all. As I have become more and more employable, and more and more sought after, I have less and less left in me to enjoy these privileges.

Was this the right way to go?

I used to think so. I used to think that no investment was too large if it rendered me able to have friends and be around people. Now, realizing that the investment required results in being overdrawn a lot of the time, I’m not so sure.

I have traveled too far down this path to go back and do it another way. But the cost has been exceedingly high, and now, my productivity is nowhere near what it used to be. Even as I have become more adept, and thus a better spokesperson, I am so limited by what I have to do to be that person that I may not be able to invest enough energy in doing the work that comes with it, that I want to do, that I have spent this energy in making possible.

I created the term “Autism Paradox” to describe the catch-22 autistics face in the workplace, where they have to choose between not hiding their autism and being under- or unemployed, or hiding their autism for the sake of their co-workers and not being able to get accommodations because they look too normal.

But there is another Autism Paradox, that is even more harmful, and I am in it. The amount of energy I have to expend to hide my autism prevents me from having enough left over to enjoy the fruits thereof, like a regular job, or extracurricular activities, or going out with friends.

How many of us are like me, having perfected the mask, but at such a great cost? I’m often praised for my ability to look normal. It seems effortless.

It is anything but. And for that reason, I feel like–no, I know–people don’t appreciate what it costs me to do it. And I have no idea how to undo it, or even if that’s possible.

But at least now, I know what happened.

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whiteness

African American History Museum Whiteness Chart discussing aspects of White Culture

The African American History Museum was forced to take this down due to complaints about it. I have thus recreated it from pieces on the internet and am preserving it here for posterity. The image is downloadable.

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melted

Photograph of chain-locked wire fencing with radiation warning signs

When I was planning this trip, I thought I was psychologically prepared for the higher-than-usual amount of change and uncertainty that accompanies a vacation to a new locale and involves a group of family members, two of which are capable teenagers but remain under our supervisory capacity. I had been making these assumptions based on a line of thinking that included having gone to the beach almost every year of my life. Not this beach, but beach is beach, right? I’d managed solo beach trips to novel beaches (pre-pandemic, of course) before with no trouble at all. How different could it be?

While I’m making a list of unfounded assumptions, I will add that I had been laboring under the delusion that my meltdowns were now predictable, manageable, and in many cases, even avoidable. I had even gone so far as to assume (laughably so, in retrospect) that this phenomenon was pandemic- and location-resistant. That the pandemic might have been unusually taxing, or that such management was predicated on my ability to manage my surroundings and was buttressed by psychological and, when necessary, physical support from Captain Ape, never entered my mind.

And then, last night, the third night in a row where our dinner plans ended in a partial or complete cluster, well, that delusion went down like a sand castle at high tide. The presences of my sister, my niece, and my niece’s boyfriend were all irrelevant. I walked into the apartment with food that I’d had to drive thirty-plus miles and 45 minutes out of my way and back to get, dropped it on the counter, and promptly lost my s***.

Screaming, cussing, and door slamming were soon followed by being crumpled in a ball on the bedroom floor sobbing. After a several minutes of this, I sent my sister out to eat dinner with the kids. I did not, could not, leave the bedroom for almost two hours. It took over a half an hour before I could even stop sobbing, and a long bath and a phone call with an autism-sympathetic friend to get myself pulled back together enough to be able to finally leave the bedroom and eat some of the food I’d gone to such lengths to get.

Now having been thoroughly humiliated in front of my far too wise and accepting niece, who appeared to take the entire incident in stride, and her boyfriend, a wonderful young man who may or may not have ever witnessed an otherwise capable adult disintegrate so completely, I have decided not to go down to the beach with everyone else today. My relief when they left the unit was palpable, but I am still barely holding myself together.

The stress of the last four months, coupled with what should have been completely expected snafus that always accompany a hastily planned vacation to a new place, have shredded my self-possession seemingly beyond repair. It is now halfway through the following day I am not much better.

I can’t stop crying. I miss my apartment, my cats, and my significant other terribly. It is beautiful here and now I wish I were back home where I could crawl into Captain Ape and he would hold me tightly enough to keep me from flying into pieces, which is how I feel right now, as though all my pieces are scattered everywhere and I don’t have the energy to go and get them all, never mind try to put them back together.

All this time, during the pandemic, the trip here, being here, I’ve been expending more and more mental energy to hold myself together, not realizing that the cost of such efforts had been increasing exponentially. Last night, the tank abruptly ran dry. And my erroneous assumption that I possessed strong enough faculties to conduct myself like an NT even in the most stressful of situations disintegrated right along with me.

This failure now looks utterly predictable and I am bouncing back and forth between berating myself for having the meltdown in front of the teenagers and berating myself for not seeing it coming. I could have leaned on my sister more and I didn’t. I saw myself running low and pretended that running low was not inevitably followed by running out. I figured I just needed to hang on through whatever happened and I would be OK.

But hanging on takes energy, and I didn’t have it. I forgot that I have to spend it hiding my autistic tendencies (interpreted as rudeness by NTs) from my niece and her companion even though they know me well. I forgot that I have spend more of it interacting with NTs to get things done. I forgot that being someplace that wasn’t familiar, no matter how pleasant, would be an additional drain.

As such, I forgot to build in opportunities to refuel. I decided, as I have so many times before, and always to my detriment, that I could function just as well here as I did at home. That I could be just as resilient as my non-autistic sister.

Fail, fail, and epic fail.

And that’s what I feel like. I feel like an epic failure. I should have known better, I do know better, and yet I managed to fail myself at every possible level. As I sit here trying to weave back together something amounting to a functional level of self-esteem, I find myself too humiliated and too ill-equipped to do so. I need to be alone and I need to be held very very tightly, a logistically problematic situation, to say the least.

My sister, a licensed social worker, just walked back into the unit to get some lunch and found me in this state. She took one look at me and, ahem, strongly suggested I take some of my anti-anxiety medication, something I have refused to do in the past. I don’t like benzos. I don’t trust myself to know when I need them–or more accurately, when I don’t need them, so my solution up to this point has been to ignore them completely, a solution that, in retrospect, now appears, ahem, misguided.

She was expecting pushback and had already launched into her pitch when I said yes. In the first self-care prioritizing decision I have made in I don’t know how long, I agreed with her assessment that I needed some help digging out of this rut I had worn myself into in less than a day. She was right; I wasn’t going to be able to calm down without help. I took the pill with the dregs of coffee remaining in this morning’s mug.

About a half hour later I was able to eat, change out of my pajamas, and head out to a discount store to pick up some necessities we had forgotten to pack. On my way up front to pay, I passed a display offering low-priced weighted blankets. I pushed my cart back and forth around the display three or four times trying to decide if it was worth the expense.

Finally, I slid it off the shelf and into my cart. Self-care decision number two. Hopefully I can keep this going for the rest of the trip.

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we did the right thing

Unmasked COVID-19 lockdown protestor holding large cardboard sign that reads "SELFISH AND PROUD!"

We did the right thing. We washed our hands, didn’t touch our faces (we think), limited grocery trips to once a week, stopped seeing our families, our friends, our loved ones. We wore masks religiously. We practiced patience even as our anxiety was ratcheted up daily by new cases, new hospitalizations, new deaths that used to be front page, headline news and now have become depressingly routine and are sidelined in favor of political antics in an election year.

And it didn’t matter. Because a few people–vanishingly few, if you think about how many people there actually are in this country (~330 mil)–decided that their own pleasure, their own needs, their own discomfort, were more important than saving lives and stopping the spread of a fatal disease against which no-one has any immunity at all. They and their selfishness ruined it for the rest of us. And now we have to start over. At a time when all I want to do is wrap my arms around my parents, who had a father and brother pass away while all this was going on, I can’t, and not only that, I have no idea when I will be able to again.

I miss my parents, who are not young and live less than a half hour from here, and who I was used to visiting every few weeks or so. I have not seen them, other than by Zoom, since late February. I miss my friends–I am autistic, I don’t have that many close friends–they are my lifeline, my translators, my cheerleaders, my links to a neurotypical world that I only partially understand. With the unique clarity of emotionless observance bestowed by my autism, this whole mask-wearing sturm and drang is seen for the patent absurdism it is. Get over yourself, people. Wear the damn mask. Even Captain Ape, my significant other who leans more conservative than me, has been wearing a disposable mask without complaint since March and recently purchased a cloth one for himself for long-term use.

And it doesn’t matter. None of it does. We are right back where we started. I presciently cancelled a vacation to the Eastern shore in late May, calculating for a rush of self-centered vacation-goers that would descend on the area over Memorial Day weekend and cause a re-closure therein, and sure enough, the area has now enacted a strict quarantine. Instead, a few of us will be going to a little-known beach community in our own state, minus our parents, for a week. This is a somewhat inadequate substitute for the usual two-week mass-family get-together we enjoy at a popular beach town that is a home-away-from-home for us, but we are blessed to be able to do it and I am grateful, and, honestly, a little terrified, that even doing this constitutes an unacceptable risk.

But all my careful planning doesn’t matter. My parents, our loved ones, all the vulnerable people we know and care for and worry about, they are at an even higher risk than they were four months ago, now that the virus has reached in to every community, large and small, to manhandle its population with absolutely no regard for politics, with even freer rein in communities with fewer health resources. Nothing has changed since April.

No, that isn’t true. Now, things are immeasurably worse. We had a chance to fix this and it was squandered by a bunch of self-centered a**holes falsely claiming that their freedom to infect others and get a haircut and go to Applebee’s was more important than everyone else’s freedom from disease. These people like to claim that asking someone to wear a mask is “forcing” people to do something. They fail to understand that not wearing a mask is forcing every single vulnerable person, and every single person who lives with or cares for a vulnerable person, to stay away from whatever gathering these non-mask-wearing, self-absorbed pricks decided to spread their spit around.

And I am angry, and I am tired, and I am frustrated, and I want to scream and cry and hit something, a lot of somethings, (or someones, let’s be honest) as hard as I can. Even though I didn’t spend all that much time outside the home or hanging out with my friends before all this, it was far more than nothing, and now it looks like nothing is how it’s going to be basically until I get it and maybe recover or until there is a vaccine.

Now, we who did what we were told, who followed the advice of health experts, are being punished for other people’s self-absorption. We are paying the bill for their profligate activities. I can’t even visit my faith community right now because they refuse to force people to wear masks for meetings and fellowship. Because they claim that they are open to all and can’t tell anyone what to do, conveniently ignoring the fact that by not enforcing mask-wearing, they are excluding a significant number of people from receiving the comfort they, and I, incidentally, need.

That’s right, people. Not wearing a mask is a gesture of exclusivity, not inclusivity. And if everyone, including you, had done the next right thing from the beginning, we wouldn’t be in the mess we’re in right now. Because of you. You, you non-mask-wearing, self-centered m-f. This is all–yes, all–your fault. I can’t see my parents because of you. I can’t go to a church basement because of you. I can’t go back to grad school in person in the Fall because of you. My income is suffering, and will continue to suffer, because of you.

We all made sacrifices. You refused. We did the right thing. You didn’t. And because you didn’t, we have to start all over, at a time when most of us are ill-equipped to endure another four months of solitude.

Your insistence on personal freedom has taken away everyone’s else’s personal freedom. I hope it was worth it.

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the default myth

Photo by Markus Spiske

One of my opportunities as a professional editor for primary research articles and dissertations is they are often primers on subject matter on which I am not an expert. A dissertation I edited last year introduced me to the concept of White Culture.

I had never thought of myself as having a culture. I had often, in fact, bemoaned the fact that I did not have a culture of my own in which to ground myself. I leaned on my Italian heritage and sought out related influences, modeling myself after the great-great aunts and grandmothers I’d been told stories about growing up. I remained blind to the fact that I was already steeped in a narrow and inscribable culture that exerted considerable influence on my thoughts, feelings, and actions. I remained totally unaware of this influence not just on what I did, but who I imagined myself to be.

What is White Culture? Here are a few items:

  • The elevating of quantitative data and information in the form of observable proof and outcomes supported by hard evidence, and an accompanying distrust of information lacking these underpinnings.

  • The willful siloing (separation) of public institutions from one another, including faith, community, government, accountability (the law), and medicine.

  • The privileging of an individual’s needs and autonomy over the well-being of the population as a whole. This can be seen in middle to upper class white families spending money and using nepotism to place their own children in the best possible situations at the expense of children from poor white and non-white families.

  • The prioritizing of individual wealth over societal good, as evidenced by anti-government rhetoric and anti-tax propaganda.

  • Well-defined social strata and a mistaken belief that it is easy to move among them despite, paradoxically, hard evidence to the contrary. This results in the demonizing of the bottom rung as lazy or stupid, and for those born into privilege to assume their financial fortune is based on effort rather than luck.

  • Black and white, us-versus-them, zero sum attitudes towards conflict and the double standards that naturally arise out of this viewpoint.

When I learned about these things, courtesy of a dissertation I edited followed by a rhetorical theory course, I suddenly saw them in my concept of self-worth in stark relief. Worship of hard data? Check. Separation of institutions? Check. Individualism? Check. Black and white thinking? Check. Distaste for those less fortunate than I? Check. I have been working to dismantle that last one for years, but with only mixed results, and less accountability than I should have.

Since I became aware of these things about myself, I have struggled to extricate them. I have reassessed my distrust of non-empirical data, although I have not been able to shake it. I have exerted myself to learn the different environments and circumstances that conferred or withheld opportunity and to understand and respect the individuals in them and their belief systems, even if I disagreed with them, also with only limited success.

It is a work in progress and will be for some time. And the fact that it is such hard work has shed light on why it is so hard for neurotypicals to understand autism. Neurotypicals struggle to understand other neurotypicals with opposing belief systems. No wonder they cannot wrap their heads around not just a different belief system, but an entirely different way of perceiving and understanding reality. Neurotypicals assume that their conception of reality is a default against which others are measured, rather than a single option among a broad range of them. The idea that one’s mental processes are not a default but a specific type that not everyone has is a heavy lift, no doubt about it.

I don’t want to make this post about my autism, though. I want to speak to this moment in time regarding civil rights. I want to discuss how White Culture has perpetuated systemic racism. And for the record, systemic racism does NOT mean people in the system are racist. According to the eloquent Radley Balko*, it actually does not speak to the beliefs or actions of the people in the system at all. Instead, Balko affirms that systemic racism refers to the “systems and institutions that produce racially disparate outcomes regardless of the intentions of the people who work within them.”

There is a tendency among whites, myself included, to assume that our culture [sic] is a default, or an absence of culture. This, in turn, leads us to assume we are normal and that any aberrations from our normal are just that–aberrations. When we see these aberrations, the natural tendency is to assume that they arise due to a lack of experience or intelligence, and to subconsciously (or consciously, in some cases) think of people in the aberrational culture as less human, less important, less feeling, and less worthy of respect than those like oneself.

This has its roots in White colonialism. White colonialism entails a recognition that the lion’s share of colonial history we are taught was written by white colonists, and that the experiences of the colonized were only described from a white colonist’s viewpoint. It seeks to at least partially rectify this by seeking out and highlighting these experiences in the voices of the colonized themselves.

White colonialism produced what is called the “colonial gaze,” the vantage point from which colonizers looked down upon the purportedly less evolved and less intelligent natives of whatever land they took possession. This perception allowed colonials to treat the natives in one of two ways: to try to “fix” them by imposing White cultural ideals upon them, or to view them as animals and treat them as such. While there were a few notable individuals who pointed out the ethical problems with both these activities, these individuals remained on the fringes, unable to make a dent in the status quo.

We can draw a straight and uninterrupted line from the colonial gaze to the mistreatment of non-whites that is perpetuated throughout White cultural institutions, including:

  • Medicine Blacks were originally thought not to feel pain at all, and are still considered to feel less pain than whites by a plurality of doctors and nurses.

  • Government and public service Acts to limit imaginary “voter fraud” disproportionately disenfranchise non-white voters. Gerry-mandering persists in most states wherein minority votes are concentrated in a single district to limit their representation and influence on policy.

  • Immigration Incarceration and inhuman treatment of non-citizens crossing the border persists, with immigrant families and children in cages and denied food, water, bathrooms, and medical care.

  • Law enforcement Blacks are three times more likely than whites to be injured or killed by police.

  • The court system Blacks are five times more likely than whites to be incarcerated and for longer periods of time than whites guilty of the same offenses and with the same histories.

  • Education. See racialized tracking, a system wherein non-white students are penalized more harshly for misbehavior than the same behavior in white students and shunted away from accelerated courses and opportunities that whites are preferentially shuttled into.

  • The financial system Banks charge non-whites between 5 and 9 points more on their loans than equally-qualified white borrowers.

In fact, if you Google “Racial Disparity” you’ll get hits ranging from Cliff Notes to YouTube to the Science Direct primary research database.

If this isn’t evidence of systemic racism, I don’t know what is. And as much as this phenomenon bothered me, I never examined my own bias and prejudices. I never took action against systemic injustices. I told myself the problem was simply too big to solve to excuse this lack of action. But the closer I examined my natural responses to differently colored people, the more previously unrecognized bias I uncovered.

  • I realized that I assumed that black people were “stronger” than white people physically and mentally.

  • I realized that I assumed all blacks thought and felt the same way about all political issues.

  • I realized that I assumed political beliefs I disagreed with were the outcomes of lazy thinking, rather than natural, evidence-based conclusions borne out of one’s circumstances.

  • I realized that I assumed that loiterers were criminals and not individuals in bad circumstances trying to find work.

  • I realized that I assumed that blacks who wore their hair, dressed, and spoke “white” did so by personal choice, and not because they were forced to in order to succeed.

  • I realized that my efforts to learn more about other whites from different communities were not matched by efforts to learn more about non-whites from different communities.

  • I realized that I had never thought twice about the fact that all of my interactions with police were completely non-violent and never escalated beyond a citation.

In fact, when I was pulled over in college going 95 in a 65, something that would have surely resulted in a beating and arrest if I were a black man, all I got was a court summons; I was then allowed to drive home. No handcuffs were employed. In court, I got probation and a fine. No jail time. The extent to which this experience reflected the color of my skin did not occur to me until literally the last few days or so.

I’m so ashamed of my contributions to systemic racism, of my privilege in ignoring certain laws without fearing for my life, of taking for granted that I get preferential treatment from the system because I am white, and I look and sound white, and that even if I chose to dress and speak differently, I could make that choice without losing access to my privilege.

It’s upsetting, but it’s also motivating. I’m not stuck thinking this way; I can change it. I can change my behavior. I can check my privilege before responding. I can apply a White Culture and white privilege prism to my life to root out personal bias. It’s hard and it takes a lot of mental bandwidth, something I don’t always have a surplus of, but now that I have realized these uncomfortable truths about myself, it is my responsibility to address them.

It may be that my understanding of autism and how it differs from a supposed default neurology has made me more open to the idea that there really isn’t a default anything, be it thinking, perceiving, looking, sounding, acting, feeling, or knowing.

It thus follows that there is no such thing as a default culture, body, or mind. There are countless different versions of all of these, even among different individuals we lump into categories like black, conservative, disabled, autistic. Dispelling the seductive myth of the default is an important first step towards removing systemic entanglements with racism, with ableism, with cronyism, with chauvinism. We need to see with fresh eyes and think with fresh minds. Look around you and see your culture. Recognize its influence on you. Use this information to imagine how you could be better.

And I want to acknowledge that among my friends and peers, I do know a few people who already do perceive different cultures, including their own, as simply different, and don’t traffic in assumptions about cultural defaults. I want to honor them as examples of how I want to think about and interact with others that may look different from me. I want to become one of those people.

I know that being better people is something everyone does want, no matter what their apparent category is. This moment is an opportunity to move past default-based ideas and accept new possibilities. I plan to take it.

*This post originally misspelled Mr. Balko’s first name as Rodney instead of Radley. The latter is correct.
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normal

A photo of a white neon sign against a dark brick wall that says "THIS IS THE SIGN YOU'VE BEEN LOOKING FOR"

Photo by Austin Chan

Yes, I am usually unqualified to write a post entitled “normal.” But occasionally, my inability to assimilate emotion and information, something that has been ascribed to my autism, is useful, maybe even necessary.

This is one of the those times.

So here goes:

The coronavirus is not going away. Vaccine or no vaccine, cure or no cure, it will be with us for many years–yes, years–to come. Based on what I’ve read, from various primary and non-primary sources, this is how things are now. We are not going to go back to what normal was before this virus exploded across the globe. That normal is gone.

What we are experiencing right now, social distancing, masks, limits on group events, and quarantine “bubbles,” is the new normal. This is no longer an aberration. This is life.

Admittedly, it’s incredibly depressing to realize that the lives we took for granted around four months ago are completely gone. We didn’t get a chance to do the things we would have done if we’d known, like hug our grandparents or nieces and nephews, or take our kids to the park, or go visit that friend who lives two or five or ten hours away that we’ve been meaning to take a weekend trip to see. Didn’t get to go to one more football game, or basketball game, or any kind of game. Didn’t go to a parade. Didn’t go to a party. Didn’t answer the door for trick-or-treaters (OK, that’s probably just me). Didn’t have a cookout with our neighbors.

And now we can’t. Not can’t for now, not can’t for the next however so many weeks or months. Just, can’t.

It’s painful. But it needs to be said. For us to move on, mentally and emotionally, we need to recognize that our lives have drastically changed, seemingly in an instant, and that change is permanent.

Conveying this information is useful because it provides certainty where there wasn’t any. I can’t speak for other autistics, and definitely not for non-autistics, but for me, uncertainty is the hardest thing to deal with, mentally and emotionally. And being able to admit to myself that I am not in suspended animation, that I have stepped off a bridge onto a new place and that the bridge that got me here only goes in one direction, has been surprisingly reassuring.

I found the realization that I can start making plans in this environment because this is how things will be for the foreseeable, to be a relief. I mean, I’m not jumping for joy or anything, but acceptance has allowed my anxiety to start edging downward.

This is another situation where autistic voices can be important. Our ability to face hard truths and eschew ambiguity, our mental flexibility in the face of new information, and our natural tendency to compartmentalize, to deal with emotions and information discretely, means that we are uniquely equipped to provide unpleasant but necessary information in no uncertain terms. No “might.” No “suggests.” No “supports the idea.” Just a basic, raw, unvarnished piece of data.

If we are to accept that autism is not a disease or a disorder, and that autistics are not robotic geniuses but just a different version of person, and that non-assimilation of cultural and social norms as natural is not just a real thing but an occasionally useful one, then stepping forward in times of crisis where we can be useful is an important function.

While this does wade into the dangerous territory of defining people by their usefulness, we can insist that isn’t necessary while still being useful. I am an autistic person with science-based post-secondary education who edits primary research for medical and life-sciences journals. As someone who does this, I feel a social responsibility to contribute to the well-being of those around me, if possible. This feels like an opportunity to do so. It might [sic] not come across that way, but hey, this is what I got.

Usually, it’s really hard to be myself. In this instant, at least, I feel like being myself is necessary. It’s a nice feeling.

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Black Lives Matter

Photo of a person wearing a red t-shirt with the slogan "Black Lives Matter." The slogan fills the entire frame.

I am autistic. I suffer a great deal because of it.

But. I can hide my autism from other people. I can disguise myself as a neurotypical.

Non-white people have no such privilege, no such security. In this country, their daily lives are marked by a casual racism they must always account for, daily lives that whites take for granted in a culture wherein even people like myself, who are not overtly racist and do not believe that color of skin defines character, are allowed the privilege of not engaging with the deep-set, disgustingly acceptable racism that pervades life in this country at every level.

I hereby want to acknowledge that my lack of active resistance to the racism of white culture was a privilege that amounted to tacit acceptance. I am ashamed, I am humbled, and I am horrified at my failure to comprehend and empathize with those whose lives are inscribed by an injustice so pervasive that those not thus inscribed assume it is a default, rather than a ignominious aberration from what it means to be a decent human being.

I will not stand on the sidelines any longer. Black Lives Matter.

Comments that say “All Lives Matter” or otherwise will be deleted. I defy anyone to watch the George Floyd video and attempt to perpetuate such a fiction. If all lives mattered, he, and countless others treated that way in the absence of video footage, would still be alive.

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