May 2018

Animals die.

This is a thing that every pet-owner knows, whether or not they’ve yet to go through the experience. Animals get sick, animals get hurt, and animals die. It’s a given that this is something zoos have to deal with, too.

Recently, it’s been bothering me that the Oregon Zoo never really discusses this basic fact of animal life until and unless a death involves one of their marquee animals — say: elephants, lions, or polar bears. The deaths of other animals under their care don’t seem to rate.

I’ve been going to the zoo once a week for awhile now; it’s a mental health trip for me. I spend most of my time split between the sea otters and the Trillium Creek Family Farm, where I watch the zoo’s goats.

The goats are sort of a low-rent, low-key exhibit, which to an extent makes sense. It’s a calmer part of the zoo, and the animals there are far more low-maintanence than those in other exhibits. At the same time, the zoo hasn’t even bothered to make signs for five of its eight goats, leaving visitors to wonder who are all the goats not named Bahari, Molly, or Kirsten, which makes less sense to me. (The website, for that matter, only acknowledges the presence of pygmy and pygora goats, leaving poor Nigerian dwarf goat Bahari in the virtual wilderness.)

More on point, though, is that the zoo recently lost two of its goats: the geriatric Stealer, one of the pygroa goats along with the surviving Molly and Kirsten, and the newborn Elena, one of the recently-acquired baby goats along with Ruth and Sonia.

The arrival of three two-week-old goats was touted heavily. Local media were all over it, as the zoo pushed the angle of the three having been named for Ruth Bader Ginsburg, Sonia Sotomayor, and Elena Kagan. “The Justice Goats,” they dubbed them.

Not long after, Elena was missing in action.

I asked a staffer on duty in early March where she was and got back a whispered, “Died.” She only added something along the lines of, “I guess they can be fragile.” Despite the intense promotion of the three kids’ arrival at the zoo, Elena’s passing went completely unremarked upon. I still don’t know anything more than that.

The zoo recently engaged in another round of heavy promotion of the (two remaining) goat kids with the launch of a Facebook show in which Ruth and Sonia walk the zoo and meet some of the other animals there. It’s understandably great, if filled with terrible puns, and I look forward to Ruth and Sonia meeting the zoo’s tall goats (you know them as giraffes).

There’s been no mention by the zoo of this originally having been a trio, and as far as I know none of the local press, which naturally picked up on “Tiny Goat Visits” and which also heavily promoted the kids’ arrival at the beginning of the year, seems to have asked, “So, hey, didn’t there used to be a third?”

So much for Elena.

That same day, I noticed Stealer wasn’t around, either.

I later learned from a keeper that he’d died in late February. Stealer, along with all the zoo’s pygora goats, are somewhere between 11- and 15-years-old, depending on which keeper you’re taking to. Either way, the point is that the zoo’s pygoras are old for goats. Stealer generally was something of a hobbly goat in what turned out to be his final months. Nothing untoward happened: Stealer got old, and Stealer died. Every week, I dread showing up to find that either Molly or Kirsten is gone.

I should note that while rummaging for photos of the zoo’s goats, I noticed that last year around this time there were even more goats: pygora goats Nellie and Gracie appear since to have gone away. There was at least one additional pygmy goat that I don’t even recognize, and wouldn’t have been able to identify at the time anyway since the pygmys didn’t get identifying signs. (I’ve since learned everyone else’s names by asking the keepers.)

The zoo’s goats have been passing unnoticed by anyone for some time now, it seems.

So much for Stealer.

To be clear: my criticisms here are of the zoo’s leadership and communication teams, not of the keepers at the Farm exhibit. I’ve had perfectly fine conversations with keepers and volunteers at the Farm, and no one there takes lightly the loss of any of their animals. That’s something, inevitably, that you would find true all over the zoo.

As seems frequently the case, the people on the ground doing the actual work are not the problem.

I’ve been ranting on Twitter for a couple months now about the deaths of zoo goats not getting any attention or acknowledgment. A version of these rants found their way into an email I sent the zoo last Monday.

This is a pet (pardon the term) peeve for a few months now, but I wanted to express some frustration that while the zoo touts its baby mountain goat to the press, you still haven’t told the story losing one the three baby true goats (Elena) or long-time goat resident Stealer.

It’s difficult for me to accept the idea that non-marquee zoo animals only get their stories told when it’s good news. Only marquee animals have the bad news stories told, too. It’s as if you feel that you can’t pretend problems don’t happen when it’s a marquee animal because they are, well, the marquee animals.

But all these stories matter if you’re going to run an animal organization.

Otherwise, I’ll be honest here about how I feel about it: the story you present to the paying public and the relevant local government is incomplete.

It’s a sort of lie by omission.

Animals die. That happens. This pretense that we only talk about it when it’s an elephant or a polar bear makes me sad.

Tell your animals’ stories. Tell their whole stories. If you can’t hack that because, I don’t know, maybe you fear how people will view the zoo or some nonsense, bring both leadership and communicators on board who aren’t afraid to tell the zoo’s whole story.

Stealer deserves better.

(I won’t even mention that the farm exhibit that can’t even bother to put up identifying photos/names of more than three of its eight goats.)

Their response, in an email this week from the zoo’s media contact, offered a full-throated defense of the zoo’s communications policy.

Thank you for reaching out on this — it is great to see someone with such a passion for animals!

With so many animals in our care — around 2,000 individuals representing more than 200 species — we are faced with quality-of-life decisions and animal deaths on a regular basis. Every animal’s life is important. Yet the unfortunate reality is that, to the general public, not every animal’s death is considered newsworthy (in the same way that most people’s pets — and for that matter most people themselves — do not receive obituaries when they die). From a practical communications standpoint, we needed a consistent method for determining whether a death is reported to the media and public, and so we take following elements of newsworthiness into account (in general, at least two must apply in order for us to report/publicize):

  • Prominence: Is the animal considered high-profile or iconic — i.e., easily identifiable and recognized as an individual by the general public?
  • Significance of species: Did the animal belong to a species currently listed as endangered, critically endangered or extinct in the wild by the IUCN or U.S. Fish and Wildlife Service?
  • Significance to species: Did the animal’s life/history represent a notable contribution to its species (e.g., critically endangered Amur leopard Kia raised 9 cubs) or help advance science/research (e.g., polar bear Conrad’s participation in USGS studies could help us better understand effects of climate change).
  • Extremes and superlatives: Is this animal the first, last, biggest, smallest, tallest, oldest, etc. — e.g., the oldest member of the AZA population, or the last member of its species at the zoo (with no plans to acquire more)?
  • Circumstances: Is the cause of death exceptional and newsworthy in and of itself — e.g., struck by lightning, etc.?
  • In most cases, an animal’s death will not be announced if:
    • The species has a median life expectancy of 3 years or less.
    • The species is abundant at the zoo (e.g., flamingos, fruit bats, silverspot butterflies, etc.).
    • The individual has been in the care of zoo staff for a short period of time.
    • The individual was in quarantine and/or never went on public view.

I understand that this answer may not satisfy you, but I hope it at least makes sense.

In the end, it makes sense to me only in this way: it’s a nice set of criteria to avoid having to deal with the difficult conversations about running a zoo.

I mean, I get it: some people hate zoos and inevitably will come for you given the slightest opportunity, but as I said to begin with: if you can’t hack that responsibility you should probably get out of the zoo game. If the mission is to educate the public about animals, you shouldn’t get to pick and choose what parts of an animal’s life you talk about and what parts you don’t.

But, also, I was never talking about publicity campaigns or press releases. No one needs a media strategy just to note the routine passing of animals.

It would take little to no effort, at an organization the size of the Oregon Zoo, to maintain life event notices for each exhibit on the zoo’s website. No one needs to spend a week drafting a release to be sent to the media. No one even needs to write more than a sentence or two. Reading the zoo’s reply to me, I was left thinking — despite that smartly-crafted opening sentence to me— that the communications team does not seem actually to share the same passion shown by the keepers themselves. Their reply, instead, seems to indicate that their policy is built to keep the emotion and the passion out of the decision altogether.

That indeed does “make sense” if, as keeps nagging at me, the real goal is to avoid provoking the emotional response of zoo opponents. It does not make sense if you truly care about the animals — and about the people who connect with them, be they keeper or visitor.

(And, let me just say, the remark that not all people get obituaries is a deeply weird distraction, and not at all analogous. Most people are not public figures and have no need of obituaries; the circle of people who care likely will be in the know. Zoo animals, by their very nature, are public figures. That’s literally their job: to be on display in order to educate the public. Why would this not extend to their deaths?)

People don’t care about the goats, the zoo in effect argues. People only care about the polar bears or the lions or the elephants. Except, you know, zoos go out of their way to make people care about all of their animals. But then they don’t offer those same people the common courtesy of letting them know when one is gone?

This isn’t about “publicizing” the death of an animal. It’s not about what animals are “newsworthy” — a truly soulless formulation and exactly the sort of mercenary reasoning opponents of zoos accuse them of operating under. It’s about simple acknowledgment. There’s a story behind every exhibit, and that story begins and ends with the animals in it.

Elena, Stealer, Nellie, Gracie, Latte, who knows who else: they all deserved better than the memory hole.

I find fascinating the suggestion that introversion might have some relation to autism because before my diagnosis the elements of introversion resonated with me, and I found it a useful tool to manage certain social stresses, both in terms of how I dealt with them internally and how I justified my reactions to the world and to other people. Introversion was my only toolkit.

I’m not sure I’m convinced introversion actually relates to autism, but the language of introversion certainly helped me explain to people what my limitations were, in a social communication context, before I learned that the language of autism was far better and far more responsive. So I’ve been doing some reading of people debating “introversion versus autism”.

Dictionaries tend to define *introversion* as something along the lines of “the state of or tendency toward being wholly or predominantly concerned with and interested in one’s own mental life” or “the state of being concerned primarily with one’s own thoughts andfeelings rather than with the external environment”.

Introverts discussing introversion tend to describe it more in terms of what energizes them versus what enervates them as an introvert.

An introvert prefers to spend time alone in order to recharge their inner being. An introvert may appear to be shy to others, but that is not necessarily an accurate label. Being among groups of friends, family and even strangers can be wonderfully stimulating and joyous occasions. Interacting with people and attention to multiple sources of stimuli tends to draw down an introvert’s energy causing them to eventually withdraw to spend time alone to re-energize. Small talk and pointless conversations tend to draw down an introvert’s energy rapidly.

The way in which introverts describe this experience seems to be why some people think there’s a possible connection between introversion and autism, despite the confusing fact that autistic people aren’t all introverted. This sort of suggests to me that it’s less about a possible connection, or about introversion being on the spectrum, than about a bunch of people deeming themselves or their loved ones introverted when instead they actually are probably somewhere on the spectrum.

I was especially struck by this idea when I ended up on a mommyblog whose page title revealingly differs from its post title: “Why I Won’t Take My Introverted Son To Be Evaluated For Autism”.

After providing what she calls a “laundry list” of common autistic features that her son definitely displays, she decides that her son instead is simply an introvert without any discussion of what defines introversion. Further, she argues that the fact that her son talks a lot at home and engages with his sister means he can’t possibly be autistic.

What gets me, though, is the bit where she just throws autistic people under the bus.

To consider him autistic would … minimize his natural temperament and strengths. …

I’ve read this again and again and I can’t for the life of me identify how this is meant to be read. Maybe he *is* simply introverted (although I really do doubt it). That’s fine, but how, exactly, would her son instead being autistic “minimize his natural temperament and strengths”? Those things would still be there.

Does she think that what in her son is “natural” and “strong” if he’s introverted suddenly becomes “unnatural” and “weak” if he’s autistic? How else are we supposed to read that line?

It reminds me of the agitation I felt when I wrote about the father who, because he hates labels and believes life is only and entirely about one’s own “free will”, refuses to call his son autistic, instead preferring only to say that he was diagnosed on the spectrum. There is something about the idea of being autistic that seems either to offend people or to make them afraid.

The only thing being minimized by avoiding either a potential diagnosis or use of the word itself is the future of someone who in fact might be autistic.

The one positive thing I can say here is that maybe this woman’s son at least will grow up with the gift of the language of introversion, a language that, while inadequate to the task when I discovered it later in life but still before my autism diagnosis, did give me ways to protect myself against some of the impacts of unknowingly being an autistic person.

Maybe he will find some insulation there. Maybe he will find some navigational tools.

It’s still better, though, to find out if you have the *right* toolkit, the right language. Fearing that being autistic will brand your child with some sort of lifelong stigma, or, more weirdly, suddenly convert their natural temperament and strengths into something unnatural and weak?

That *is* the stigma in action.

I was thinking today about a couple things I’ve posted as responses to other people, and how they actually might connect in such a way as my response to the one actually ends up explaining my somewhat intense reaction to the other.

The more recent of the two was in reaction to Bill Kenower rejecting the use of labels because he considers his own free will to be the only determinant of his life. It rankled me, more than I could justify or comprehend only from my general dislike of people thinking “will” is all there is to the world.

I know labels and diagnosis are supposed to be useful … We give that someone a label and now we can say they are doing this thing because of what of they have.

As I responded at the time, mine are extraordinarily useful. When your brain is wired in a way that conflicts with the ways in which the world around you is constructed (which, after all, was constructed for people with very different wiring), I find that being able to describe the whys and wherefores of that conflict certainly help me navigate, and, further, help other people adapt to me, so I’m not always the one, quite unfairly, doing all the work.

I’ll be honest: I wasn’t understanding what scares people about the label “autistic”. Recently, I re-read something else that I’d posted here and saw it in a new light. Perhaps an explanatory one. The key in Kenower’s post is that phrase, “what they have”.

In an earlier response to a post from The Thinkers’ Temple about use of identity-first language versus person-first language, I came down firmly on the side of the former.

I will venture to educate … people about the difference, and encourage them to use identity-first language unless an autistic person specifically asks them to do otherwise for them.

As I wrote in response, I’m still relatively new to all this, and I’m sure the matter is fraught with political peril, but I feel like “person with autism” is a phrase you’d only use if you think autism is a disease in need of a cure, akin to how we say “they have cancer” as opposed to saying “they’re a cancerous person”. I’m not going to spend what is presumptively the second half of my life, happenstantially the post-diagnosis part, looking to be cured. I’m looking to understand, and hopefully finding ways for others to do so as well. I’d hope that no one would call me “cancerous” should I ever have cancer. But, please, go right ahead and call me autistic.

It’s here, then, that I think I understand where Kenower is coming from when he refuses to say his son is autistic, preferring instead to say he was diagnosed on the spectrum. If you view autism as a *disease* rather than “simply” as a different way to order and organize a brain (and as a “disorder” only in that it doesn’t conform to the socially-accepted norm of order), of course the label is disturbing.

In effect, Kenower is saying that calling someone autistic is akin to call them cancerous, which of course no empathetic person would ever do.

If I had cancer, I’d hope that people felt sympathy. As an autistic person, I hope that people feel empathy. I don’t have autism, because autism isn’t a disease. I am autistic. I’m not afraid of what the label says about me either to myself or to the world, because unlike cancer it isn’t something to fear.

Fear of the “autistic” label, I think, comes from thinking that autism is something to be sorry for, rather than something to understand. My advice for anyone with an autistic person in their life: stop thinking of autism like you think of disease, and maybe you can stop being afraid of who they are.

Today I learned about autistic burnout. More accurately, I learned of autistic burnout last week, but set it aside for this week as something to read up on. It turns out to be useful new knowledge as lately I’ve been thinking a lot about life post-diagnosis as compared to life pre-diagnosis.

Rather than trying to craft an overview of autistic burnout, or capture here everything I’ve been learning, for context I’m simply going to link articles and posts I’ve found to be relevant or resonant. Most if not all of these links appear in the first-linked piece, which also offers some helpful pullquotes. If you don’t have time for reading, try the video linked at the top.

  1. Ask an Autistic #3 – What is Autistic Burnout?
  2. Autistic Burnout: The Cost of Coping and Passing
  3. Autistic Regression and Fluid Adaptation
  4. Aspie Burnout
  5. Autistic Burnout
  6. Help! I Seem to be Getting More Autistic!
  7. Burnout

While on the one hand there’s the general ebb and flow of stresses and recovery on a daily or weekly basis, wherein you can try to map out a regimen of self-care that allows for recuperation and rejuvenation, the notion of autistic burnout suggests that the stresses of autism, no matter how well you manage them in those short terms, nonetheless leave a kind of psychic residue, building up like plaque does in your arteries.

Over a period of years, then, it’s a ticking time bomb. Like arterial plaque increasing the risk of heart attack or stroke, the longterm masking of your autism in order to navigate a neurotypical world increases your risk of burnout.

This got me thinking about the 47 years I lived before receiving my autism diagnosis. I was autistic throughout my life, I just didn’t know it. What effect did that have? To what degree, for example, was I masking throughout those decades without consciously realizing it? If intentional long-term masking (and the other tactics and techniques autistic people use to navigate) can lead to autistic burnout, to what degree would such unconscious efforts explain why my life in middle-age seems so much harder than it did earlier on?

.   .   .

Masking, to be sure, sucks. As do the other tools of navigating the allistic world.

When you know you’re autistic, at least you know the nature of the act you’re putting on. For most of my life (to varying degrees of self-awareness), like most other people, I believed that I was a neurotypical person living in a neurotypical world — but badly, as a failure and a fuck-up. I spent decades doing my best to behave as a neurotypical person, because I had no reason to believe I was anything other than that. I didn’t even think in those terms of art, of course; I simply was like everyone else, just far worse at it than most of the other people around me.

But instinct is interesting: for the past couple of decades, I self-identified as an introvert.

It seemed pretty clear to me that while, if necessary, I could navigate certain kinds of high-population, high-impact, high-energy environments — say, the crowds at San Diego Comic-Con — they were, in the end, enervating. I found my energy, or at least my sanity, in low-population, low-impact, low-energy environments — say, living alone. Even in my convention-going days, I could only go if I had a hotel room by myself; I needed a place to escape, even if I didn’t always retreat to it. Knowing it was there helped me get through the day.

You can be both autistic and introverted, of course, but I find myself wondering how much of what I identified as introversion in reality was my autism secretly presenting itself. At the time, the only language I had to address how it felt was that of introversion.

As far as I knew, I was a normal person who was terrible at doing normal person things. Then I came to believe that I was an introvert, which gave me a way to erect certain barriers for my own protection. It didn’t help me when it came, say, to employment, but it guided me socially. Introversion as a concept, then, perhaps gave me a toe-hold into autistic self-care, long before I knew I was autistic.

Introversion and autism aren’t interchangeable things. The levels on my autism soundboard are set differently than on yours, and there are autistic people who are far more extroverted, and those who are far more introverted, than I am. It’s just that the feature set of introversion happened to overlap enough with the feature set of my undiagnosed autism to make it, for a time, a passable if incomplete substitute for addressing some social components of my life.

What I’m getting at here is the idea that living my life as a presumptively-neurotypical person who was just extraordinarily bad at so much of the life of neurotypical people, while all the while actually being unknowingly autistic, was a de facto form of masking. One in which, unawares, I was engaged for my entire life.

All the while, then, that psychic residue was building up in the arteries of my undiagnosed autism.

In recent years things got harder for me and the negative impacts increased, which likely is what prompted family members to urge me toward psychotherapy to see if there was something *real* behind my adult lifetime of troubles. Something other than me just being a failure and a fuck-up at living a normal life in the normal ways like normal people do.

My diagnosis at 47 was liberating and relieving, to be sure, but also terrifying and exhausting: that’s decades of self-understanding I could have had, if only I’d known. The biggest sense of relief came from having boxes to put things in. Boxes with names. Autism. Anxiety. OCD. Having the diagnosis became taking that diagnosis to Vocational Rehabilitation to find a suitable job placement. Wanting to seem responsive to the VR process became taking a job placement that overwhelmed me. Pushing myself to stay in that job for six months became experiencing what my psychotherapist deemed “depressive episodes” for the first time in my life.

The metaphorical stroke, arguably, was on its way sooner or later. It’s possible that I simply hastened its arrival by pushing so hard once I had gotten into the Vocational Rehabilitation process.

My reading up on autistic burnout led me to two posts on Medium that I did not link above. I wanted to separate them out because they are full of things I feel like I should have tattooed on my body for people to read before dealing with me, except that all that staring itself would overwhelm me.

It literally would be unfair for me to include here each and every one of the paragraphs I highlighted in these two pieces.

Every now and then, someone else on Medium happens to have the words for things I’ve only just barely been able to express to anyone. Finding two pieces was one of those moments. I’d actually read these two posts before any of the sources linked earlier, because I tend to check Medium for anyone writing about concepts I run across elsewhere. While I was thrilled to recognize myself in their descriptions of burnout, I worry about how they suggest that recovery from an autistic burnout can be a long-term prospect.

Just as my diagnoses themselves provided me with much-needed boxes in which to put aspects of my life that until then simply had seemed like some sort of moral failing, having this new box labelled Autistic Burnout comes as something of a relief, but the prospect of being in the midst of such a burnout creates some deep complications.

It’s a story for another time, but I am not today, and have not been for quite some time, self-sufficient. Receiving a diagnosis that I could take to Vocational Rehabilitation was supposed to help address that. As noted above, that attempt blew up in my face. Just this month (and only a month after leaving that job placement) I tried returning to a temporary position I’ve worked twice a year for six years, a job and a work environment to which I am accustomed and where I’m generally comfortable. I managed to work just one shift, and had to bow out of the remaining two, because that first day, and the two after, unexpectedly came with other outside pressures that conspired to wipe me out. I simply couldn’t handle one day of work, three days of pressure, one day recovering, and then immediately two more days more of work.

For decades, without knowing it, I was navigating an allistic world as an autistic person. Thinking it simply was that I was a failure at life, I had no tools at my disposal to minimize or mitigate the ways in which that allistic world will impact an autistic person. By the time of my diagnosis it perhaps was too late to avoid that metaphorical stroke. My zeal to turn my diagnosis into a job placement as quickly as possible might have even hastened its arrival.

So I’ve little doubt: I am suffering autistic burnout.

Now what?

This week began in stress. It began with difficulty. “Today,” I wrote on Twitter on Monday while linking something I’d posted here, “is hard.” This post is long. You won’t read it. That doesn’t matter; I needed to write it.

Most of my concentration as the week began focused on new conversations about where to move The Belmont Goats, in the wake of all four local television news stations covering our current property hunt.

Tuesday afternoon was hosting visiting hours at the herd.

Wednesday I took my usual weekly trip out for breakfast all the way across town, and managed to get someone to cover that afternoon’s visiting hours shift, allowing me to take my weekly self-care trip to the zoo. I couldn’t go the next day because it was time for my twice-a-year shift at county elections.

And that’s when things began to go awry.

The commute to work on Thursday morning was very bad. It didn’t help that a bus driver wouldn’t wait the two seconds it would take me to cross the street and board, but that wasn’t it. Body and mind were reacting to the commute as if I’d suddenly put them both on the road back to my previous job. The six-month Vocational Rehabilitation placement that had led to what my psychotherapist had deemed “depressive episodes” for the first time in my life.

My body and mind felt like I was re-traumatizing them. Being on a bus at 7:00am had to mean I was going back to where all the damage happened. I felt like my body and mind were trying to get away from me.

When I realized this was what was happening, the sensation subsided, but it took almost the entire commute to get there. It would rattle around in me all morning.

And then the start of the day’s shift went sideways.

As part of the morning’s training activities, the county had staff conduct a short presentation on diversity, equity, and inclusion. This included a module on intersectionality in which the basement full of ballot workers, seated roughly at four per table, were to study an example “identity circle”, fill out an empty circle with various aspects of their identity, and discuss their circles with the others at their table.

I’m working these three shifts at county elections not just because I generally do, but because while I’m only a month and a half out of the Vocational Rehabilitation placement, I wanted to see how a job I’ve been doing twice a year for six years felt. I don’t enjoy having a table of new people almost every time, but that’s navigable because any chatter happens while you’re opening envelopes, unfolding ballots, and filling boxes. With most of me preoccupied with the constant, repetitive busywork of the job itself, the random social chit-chat doesn’t bother me, and I can intermittently participate.

This was not that. Out of nowhere, with no advance warning, we were supposed to engage in self-examination, self-categorization, and self-expression.

Instead, I walked away and took to Twitter; I later emailed my supervisor a version of what I’d posted.

The irony of Multnomah County training on equity and diversity and inclusion having a component where you’re instructed to write down components of your identity and then discuss them with the three strangers at your table. I went for a walk.

It’s like shooting a bullseye on the target of my autism feature set. Maybe training needs to state up front that training includes activity instructions some people might not be comfortable with or capable of and that’s okay.

Not long after there was a second similar component, where again we were asked to engage in discussion. I left for the breakroom until it was over.

My commute began shortly after 7:00am. My shift began at 8:30am. The presentation began around 9:00am. By its end at 10:00am or so, that meant I’d already been subjected to PTSD-like symptoms on the bus and the anxiety of being caught by surprise by authority figures instructing me to engage in on-the-spot social communication.

The rest of the shift, fortunately, went for the most part like these election shifts usually do.

And then I got blindsided by family back east.

Several days prior, a family member had stumbled across a county resource for people with intellectual and developmental disabilities. I’d actually seen it before but since it was in the midst of my working with Vocational Rehabilitation as it was I put it off to the side. I also wasn’t entirely sure (and this is true, unfortunately, with the websites of a number of potential county resources) whether or not it was appropriate or relevant for me and my situation.

Nonetheless, I emailed them to give a rough sense of my situation, told them a family member was waving them at me but I was not clear on whether or not they were suitable for me, and asked for some guidance clarity on that point.

“I’m glad you did that,” my family member told me last weekend.

And then as I’m wrapping up my election shift on Thursday, a mere five days after that family acknowlegment that I was approaching the question of that particular resource reasonably and responsibly, I got an email from the contact at that resource saying this family member had submitted a referral form and would I like to schedule an intake interview.

I would like to once again thank my family back east for interjecting themselves into a process they had no business being in and which FIVE FUCKING DAYS AGO they expressed satisfaction with how I was dealing with it. Literally shaking in anger and anxiety.

Stop. Just stop. Please fucking stop. For the sake of my fucking sanity stop fucking making decisions that aren’t yours to make. Especially not five fucking days giving a thumbs up to the decisions I am making about this very thing.

This of course literally hits as I am leaving elections for the day after a shift that was not smooth in terms of its impact on me and what I need is a quiet commute to decompress. Fuck you fuck you fuck you.

Every single time you do this you cause me more fucking harm and we’ve been over and over and over that fact. Like the time you tried to cajole your way into dealing directly with my therapist. That was, what, TWO FUCKING MONTHS AGO.

I don’t understand what I am supposed to do. I tried so hard over the past year it damaged me. And this person won’t let me recover.

Spending six months trying to make that job placement work literally caused me trauma. And I’m supposed to just somehow snap back into action after 30 days?

I’m never going to be healed enough from that experience to start walking through the next set of decisions if this person insists upon just causing me more harm.

If there’s one thing this morning’s commute experience proved, it’s that I am still picking shrapnel out of myself from those six months. My family should not be firing buckshot in my direction.

It’s not even like I’ve spent the 40 days (40! it’s not like it’s been six months trying to recover) doing nothing. It was understood that there were 2-3 months here where I had to deal with moving our fucking nonprofit somehow not to mention that despite the trauma being caused by the stresses of that six-month workplace environment, less than two months later I said “yes” to my occasional elections job, to see how that felt.

So this week already was going to be potential minefield. As the morning’s commute bore out. But no that’s not enough. That effort isn’t enough. Family has to force something on me we had just agreed five fucking days ago I was handling well on my own.

I feel like I am going legitimately insane. I am working through those six months of damage. I’ve been doing that work. I’ve also been taking time to, you know, NOT FORCE MYSELF TO DO THAT WORK CONSTANTLY. Which is how therapy told me to approach it.

Mere hours after the emotional carnage of my commute and the county diversity presentation, just as I was thinking the day had settled down, there I was again: anxiety seizing control of my chest, and anger clenching in my stomach.

I had to send email back saying that I was nowhere near contacting them for services, that my family member had understood that, and that they were in no uncertain terms to ignore any and all future communication from that direction. This is the same family member, I should note, who months ago reached out to my psychotherapist here in Portland to try to retain them as their own psychotherapist, too.

Hence not just the anxiety, but the anger.

So now a good portion of the rest of my Thursday was in tatters as well, as I had to send messages back east asking what the fuck was going on. Not just screamingly angry at the interference but suddenly aware of now being unable to trust naything this family member told me. After crediting my approach to this county resource as reasonable, they’d gone behind my back and contacted them anyway.

This will seem tangential, but I’ve had to have numerous conversations with this family member before about not sending me things. Who tells anyone not to send them gifts, you might ask. Well, me, because of the total lack of control over what’s comign into my home and my life. I need to know what’s happening. I can’t deal with surprises, at least not the kind that are entirely avoidable if people just respect my wishes. So imagine how it felt not to be surprised by, say, a bathrobe you didn’t ask for but an intake invitation from a government services provider you hadn’t asked for services.

This is not how you treat someone whose particular autism feature set presents, among other things, with severe anxiety and cognitive rigidty.

Thursday had become an emotional wasteland, but it was, finally, over.

And then I got blindsided again, Friday morning, by the same person.

Friday was going to be busy. I wanted to go take a look at a property I’d become interested in as a potential new location for the goats. I needed to hit the grocery store. I needed to deposit donations. I needed to go get my new sunglasses adjusted.

Just as I was getting ready to leave the apartment, I started receiving a string of messages on our nonprofit’s Slack. Someone had shown up at the goats asking about me.

And some guy who says he was contacted by my mother and sister just randomly showed up at the goat field and freaked out a goatherd. Here I am, livid again and needing to do a bunch of stuff today but I am shaking.

I’m not kidding here. This guy showed up judging me at one of our volunteers, claiming to be some sort of autism advocate, and making vaguely threatening noises about conservatorship.

Totally creeped out one of our volunteers. And I am very very very angry right now.

The guy masked all this in words of concern for my wellbeing but was asking how well I took care of the goats.

I am now afraid to leave my apartment because I live in the same neighborhood as the goats. But I have things to do.

Our volunteer literally has expressed concern for my safety. Their words.

They had the impression the guy was a charlatan. In fact he is listed on the website of the bullshit Autism Speaks as a resource.

So yes, charlatan.

Also, I am having a near breakdown just leaving the apartment but yes I am out on my errands.

I am honestly more angry about his bothering a volunteer. I am very very angry about that. But the actually autistic supposedly have no empathy…

An illustrative bit: he was very insistent that I call him and very down on the idea that I prefer email. This seems consistent with the Autism Speaks angle that autism is to be fixed.

Demanding that I contact him, making weird conservatorship noises, but insisting that despite being an alleged autism advocate that I can’t use my preferred means of communicating?

At that point, I am in Day Two of physically shaking because of this family member back east. (It’s important to note here that, as established later in the day during the fury and flurry of emails back and forth, that my sister was not involved.) My first email read something like, “What is wrong with you people. Stay the fuck out of my life.”

In the end, the story was this: my mother had found someone here in Portland. A sort of self-defined and entirely unlicensed in any way autism advocate. Himself an autistic person, he indeed is listed a resource on the Autism Speaks website. If what I’m told is to be believed, he was only contacted just this past week, solely for advice. On his own, I’m told, he spent the next several days playing private detective.

It’s not difficult to find things about me. If you’ve got all the variants of my name that I’ve used informally over the years, my life in Portland especially is something of an open book. Literally true, in the case of the printed volumes of some of my local political reporting which I’d published via print-on-demand and apparently exist at the local library.

Still, apparently he was not asked to assemble a dossier on me. It’s apparently so thorough that the volunteer at the goats thought he must have been studying me for years, not the days I’m told it was.

My family’s explanation was that he doesn’t understand boundaries, because autistic people don’t understand boundaries.

All I can say to that is two things.

The only phrase that should follow “autistic people” is “are all different”.

I don’t know how it is for you but so far in my experience as an autistic person, it’s other people who don’t understand boundaries. Like, for instance, this family member.

In the end, I’d made it clear: they needed to contact this guy and tell him to stay away from me, stay away from my goats, and stay away from our volunteers. So far, as near as I can tell, he has.

And I got my errands done. And I did my Friday evening chores at the goats. And I did my Saturday morning chores and hosted visiting hours, all while a busy community event was taking place at the same time.

And then at home my body gave out. And then I had one of those “depressive episodes”.

Saturday was a big day. In addition to our usual visiting hours at the goats, it was the now-annual Lents Community Pet Parade.

We played grand marshal last year, but this year Rojo, a local therapy llama, would be headlining along with his alpaca colleague, Napoleon. Two of our goats had met Rojo and Napoleon before, but the rest of the herd… we weren’t sure they had ever seen any llama, let alone this one.

It was going to be busy. It was going to be noisy. It was going to be a bit chaotic. It was going to be good, but exhausting.

And it was. It was busy, noisy, and chaotic. And good. And hilarious, because unlike last year when the twelve goats who weren’t parading weren’t necessarily all that interested, this time they were very, very excited. It had to be about Rojo and Napoleon.

But it was exhausting. By the end, I could barely move. I didn’t have to walk home; I got a ride.

I blew $15 on Instacart delivering Outshine popsicles because I hadn’t gotten any yesterday at the store. I had several. I watched something on TV, I think. I don’t remember. I fell asleep on the couch, uncontrollably.

I somehow moved to the bedroom. I slept for three hours. I woke up. I didn’t want to be in bed but the day had been so overwhelmingly draining that I’d dreamt explaining to people that I’d just used in one day all the capacity I was going to have for the week.

I wanted to get up. I wanted to go make a sandwich. I wanted to go watch TV. I couldn’t even keep my eyelids open for more than a minute at a time.

I don’t know how to describe it. It was like a pressure but that sounds physical, like sinuses, and also that’s the wrong direction. It felt like it was coming from the outside. An immaterial, incorporeal pressure.

I had to go to the bathroom. That got me up.

So I went to make a sandwich.

I walked into the kitchen in the dark.

And started crying. My eyes were involuntarily clenching clsoed so hard, lights were flashing behind them.

I somehow ended up on the couch. I cried for five minutes. Then it was over.

Then I had a sandwich.

Then everything was heavy and numb.

Then I spent two hours writing this.

Tomorrow is Sunday. I take Sundays off. I don’t host visiting hours at the goats. I don’t have to do anything.

Please, everything, just leave me alone for a day.


Not more than a few minutes after waking up this morning, there were messages from a local talk radio station wanting me to come on before 9:00am to talk about relocating The Belmont Goats. I ignored them, and only responded later on when I was actually up and about.

(I don’t intend to use this as a sort of diary, but right now I am having maybe the toughest time since leaving the Vocational Rehabilitation job placement that nearly destroyed me. Writing it out is my only option.)

Nothing that happened over the weekend was overt physical exertion, but my body nonetheless still today apparently has nothing to give.

Breakfast was almost only coffee and a Clif bar, because yesterday evening’s exhaustion precluded doing the breakfast dishes from that morning. I managed, barely, to think of a new breakfast dish whose novelty gave me just enough energy to make it.

All morning, emails, voicemails, and texts have been flooding in about helping to relocate the goats. Most of them are people who, for whatever reason, do not understand that a 20-acre site full of blackberries in another city does not work for “Portland’s nonprofit resident herd, offering an oasis of rural community amidst the built, urban environment.” Helpful and knowledgable people we actually know are tossing out local property ideas, and while I appreciate it, I’ve had to ask for a pause because all these messages, when I’m still not in any way recovered from the expenditure of energy over the weekend, were beginning to crush me.

How does anyone “normal” manage to do more than two days of activity — two days that aren’t even full-time, and aren’t even overtly physical work — and not need at least two days off to recover? Somehow I’m supposed to make an economically self-sufficient life instead of destroying my family’s finances when I can’t even do more than two days of *personally-rewarding* work without nearing a physical and emotional collapse.

Today is hard.

I’m completely drained by this weekend, which has not been my typical weekend.

I had to staff visiting hours at The Belmont Goats on Saturday as usual, which was steadily busy for the entire three hours, half of which I had to handle solo. Then I had to return to the field in the late afternoon to be interviewed by a local news station about the herd’s next pending move. Then I agreed to come back late that night to let them shoot the live introduction to that story from the barn instead of from the parking lot.

Then I needed something restorative so I stayed up even later in order finally to finish the entire original run of Strangers in Paradise, which indeed provided a calm but meant not getting to sleep until after midnight.

Then I had to get up ad moving earlier than usual for a Sunday, which is the only one of our four visiting hours days, in order to meet a news crew from a second station at noon. Then I had to stick around because a third news crew was coming after closing.

That’s a lot of social hussling for my particular constellation of autism features, and I feel a bit like my body is trying to vibrate itself into some safer place that must exist somewhere beneath us all since gravity by necessity would have to be pulling me downward.

None of these disparate elements are bad things, and each and every one of them put something good into the world. But taken as a whole they are nearly completely exhausting.

For me, this is a lot of work to do for absolutely no financial gain. That’s not, of course, what the herd is about, but while some people become energized from the social hussle of this sort of work, I end of feeling like I *deserve* some sort of reward at the end other than the satisfaction of knowing the work itself is good.

Just to have something *concrete* to hold onto.

Back in 2016, when Instagram announced it was Facebooking itself by abandoning the simple chronological feed and instituting an algorithm, they proclaimed that the move would “show the moments we believe you will care about the most”.

The order of photos and videos in your feed will be based on the likelihood you’ll be interested in the content, your relationship with the person posting and the timeliness of the post. As we begin, we’re focusing on optimizing the order — all the posts will still be there, just in a different order.

At the time, most of the pushback focused on the natural suspicion that the changes were intended to cajole brands into purchasing Instagram ads in order to ensure people were seeing their posts. My own issues over the past two years have been different than the “simple” annoyance or irritation of having to deal with the change, although it took me awhile to recognize this as part of my autism.

For me, trying to use Instagram under the algorithm literally has been mentally painful.

(As I’ve been reading about autism, I keep coming across an apropos quote attributed to a Dr. Steven Shore: “If you’ve met one person with autism, you’ve met one person with autism.” So, fellow autistics, your mileage may vary.)

Much of my Instagram activity came as part of handling social media for The Belmont Goats, a nonprofit herd of “neighborhood attraction” goats here in Portland, Oregon. That activity wasn’t anything unusual: in addition to posting our own photos, I followed a lot of other goat accounts and liked things, occasionally adding a comment or two here and there. I also liked posts to our hashtag and geotag.

And then: Instagram algorithmic feed, meet my cognitive and behavioral rigidity.

Scrolling through a seemingly random landscape of posts made my brain hurt. To some this will sound like hyperbole, but while it might be somewhat metaphorical, it’s no exaggeration. Trying to keep up with all the goat accounts with which, to varying degrees, we’d built up relationships became a painful experience. No longer knowing for certain that what I’d encounter were new posts, then slightly older posts, then slightly more older posts — in fact, knowing for certain that this is *not* what I’d encounter — was like mental chaos. I couldn’t navigate. I didn’t know where *or when* I was in my interactions with the Instagram goats community.

Sometime last year, I stopped interacting altogether with Instagram from our nonprofit’s account except to post our own photos and announcements. The only exception is that I’m still able to like posts to our hashtag and geotag, as those feeds still offer chronological results.

(I should note that, for whatever reason, the chaos of the algorithmic feed seems far less pronounced in my personal account, which has seemed to remain more than 90% chronological. As such, I’ve still been able to use my own account without adverse effects.)

The beauty and benefit of the simple chronological feed is that it’s how everyone already experiences the world. Most people navigate that structure without even having to think about it. Engineering a social feed that deviates from such a near-universal way of understanding sequential events only makes sense, indeed, if the driving motivation is extorting brands rather than a commonly-useful user experience. It certainly doesn’t take into consideration the users for whom “chaos over chronology” is an experience they can’t handle at all.

Recently, Instagram announced a new round of changes to the feed that had some users crowing that the chronological feed was returning.

Alas, that isn’t what Instagram announced.

Based on your feedback, we’re also making changes to ensure that newer posts are more likely to appear first in feed. With these changes, your feed will feel more fresh, and you won’t miss the moments you care about.

The chronological feed isn’t returning. It’s just that, by some entirely indeterminate or at least undisclosed amount, you’ll be somewhat more likely to encounter newer posts than older posts.

I’m not entirely sure what this gets Instagram, but it certainly doesn’t get users what they asked for. Instagram, and most other social media services, regularly argue that their algorithms are designed to offer posts which the service believes the user is most likely to be interested in, ignoring any and all users who are most interested in simply being able to scroll through a chronological representation of the lives of those they follow.

An algorithmic Instagram probably works for some people, but the chronological Instagram probably worked for nearly all people. Which approach should designers and engineers take?

I’ve no idea to what degree the new, still-not-chronological Instagram feed has been implemented. I haven’t looked. The impact the chaotic feed had on me was too severe. There are enough other things in my daily life which prompt anxiety attacks that I can’t cut out of my life. Instagram, as anything other than a broadcast medium, has had to go.

Come back to the chronological way in which we live our lives, Instagram, and me and my goats will come back to you.