Hello. My name is Bix.

Some ongoing notes from a mediocre life.

After getting a second-opinion from a consulting urologist, I'll be headed for surgery probably sometime next month for, in the words of my urologist, “cystoscopy, bladder/diverticula biopsy, stone evacuation, left retrograde pyelogram, possible ureteroscopy/biopsy, possible stent”.

In the meantime, and just minutes after receiving that message confirming my decision after the second-opinion that we will be proceeding to surgery, I've been reading the results of the computerized axial tomography scan I had two weeks ago today.

By rule, I am not a flapper. Some autistics have “flappy hands”, for reasons ranging anywhere from happiness to stress. Whatever their form, stimming is self-regulatory behavior, and I have my stims, just not flapping.

Or, I should say, I have very rare flapping. I flap, but never from happiness or excitement. I flap from intense, personal nervousness.

So, yes, I spent much of the time flapping while reading the scan results, even when I was going through the parts about all the various organs which are reported to be normal. Imagine, then, as I kept googling medical terminology, how I felt as I kept getting closer to the diagnosing radiologist's “impressions” at the end of the report.

Probable posterior left lateral primary bladder transitional cell carcinoma malignancy measuring up to 3.9 cm centered along the narrow neck of the left lateral bladder diverticulum. Left lateral bladder mass involves the left UVJ and potential left distal ureter. Recommend follow-up urology consultation and cystoscopy.

What I spotted first was “carcinoma malignancy” and only after googled for “transitional cell” and then noticed the “probable”. If ever there were flap-worthy words to read, these would be them.

To be clear, the potential for cancer was known. It's why, even before we officially confirmed that we'd be headed to surgery, it was understood that they'd be performing a couple of biopsies. This was underscored during the second-opinion conversation, where the consulting physician said that even absent any of the other bladder matters, he'd definitely biopsy some things.

Moderate bilateral iliac chain, pelvic sidewall, and inguinal lymphadenopathy concerning for potential metastatic disease of bladder malignancy. Technically not enlarged, though conspicuous in number, retroperitoneal lymph nodes which could reflect early metastatic disease. Given the mild splenomegaly, differential would include a lymphoproliferative disorder such as lymphoma.

Almost immediately, I googled “lymphadenopathy”, and then “metastatic disease”. While I did also google “lymphoproliferative disorder”, I know what “lymphoma” means.

Posterior left lateral bladder diverticulum measuring up to 7.7 cm containing multiple internal calculi measuring up to 0.7 cm. Posterior right lateral bladder calculi measuring up to 0.2 cm. No ureteral calculus or hydronephrosis.

This is what started it all. Or, rather, the intermittent blood in the urine is what started it all. You know, the intermittent blood in the urine that previous doctors, two years ago, never followed up on. It's taken me some time to find a primary who seems to be actively engaged.

Bladder stones, confirmed by the cystoscopy two and a half weeks ago, but primarily trapped in a little pouch pushing out off the left side of my bladder. Elsewhere in the report, it specifies that the neck of this pouch is a mere one centimeter across, which explains why my urologist said it was tricky to get in there.

So today I realized that I do, in fact, flap my hands in a stereotypically-autistic fashion. It's just that I only do it when nervous. When very nervous. Like when reading about how you might have cancer.

For now, I await a message back from my primary, whom I've asked for a rundown on these results. For now, I await a selection of surgery dates from my urologist. For now, I write about it all.

For now, I flap.

#Autism #Cancer #Medicine #Surgery #June2019

So, it seems that I am probably done with autism-Twitter and shortly will be unfollowing a to-be-determined number of people for the sake of my own well-being, in an act of self-care.

First it was an overblown kerfuffle over use of the comparative terms “objective” and “subjective” when discussing trauma, and now it's a misread of an old psychoanalysis paper about Asperger's patients and ants.

In this article, we expand a prevailing emphasis on behavioural–educational treatments, by presenting an approach that focuses on psychodynamic factors, nonverbal communication, and animal-assisted psychotherapy. We describe interactions between patients and therapists on a procedural, verbal, and nonverbal level that further the therapeutic process with increasing affect. The treatments of an adult and a child both presenting Asperger's syndrome illustrate the bridging from their nonhuman world to the world of feelings and people.

Or, as someone on Twitter would reconstruct that last: “The treatments of an adult and a child both presenting Asperger's syndrome illustrate the bridging from [the autistic] nonhuman world to the world of feelings and people.”

Those injected brackets are doing a lot of work, framing the paper and its authors as straightforwardly dehumanizing autistic people.

Except that I read the paper online (thanks, Multnomah County Library online research tools!), and that's not even remotely what it says, or what it's about. It's about two Asperger's patients, each of whom tended not to engage in much interaction with other people, through psychotherapy managing to experience ants as a bridge to more social engagement.

(I'm not going to get into the matter of what the goals or methods of autistic psychotherapy should or should not be, here. I'm just going to stick to the matter at hand, which is what the paper does and does not say.)

In one case, Sam, this bridging happens as a result of a dream he has about an ant farm.

Then for the first time Sam brought in a dream with something alive. “It was a dream about an ant farm. The ants were under a glass dome. It dawned on me to provide water for each of the ants. But they were living in dirt and doing just fine.”

I was struck by the living things he had depicted. I acknowledged his depiction of communal life and felt very encouraged by this shift in imagery from the inanimate world to the animate world. And an ant colony is an extraordinarily busy, lively place. My commenting on the living things he had depicted for the first time also conveyed to Sam that he now had the rudimentary resources for an emotional life with people.

A few weeks later, Sam brought a dream that concerned a baseball game and led to some new material. Sam was a member of a virtual group that organizes imaginary baseball teams that are made up of players from various existing teams. Each week, on the internet they get together to compare scores based on the players they had chosen for their team, and their team's performance. Sam spends a considerable amount of time in adding, trading and deciding who plays on his team each week. This was Sam's main social connection. Once in a while the various “team managers” would get together but actually that was quite rare. The dream about the baseball game was part of a progression, as we could see in retrospect. It led from the ant farm to increasing engagement, on his terms, at his level of comfort, into the human world.

In the other case, Carl, the bridging happens through a longer series of exposures to an “antquarium” his therapist brings to his sessions.

From Sam's ant dream, I (E.-M. T.) derived the idea of adding animal assisted psychotherapy to Carl's treatment. As found in her study of behavioral patterns of children with social-behavioral problems, autistic children tend to distance themselves from a therapy dog. They tend not to caress or even look at the animal. Based on what Frank told me, I decided to work with insects, ants. I bought an Antquarium, where ants can be observed. These animals are extraordinary social. Bidirectional touch, movements, and smell serve as avenues for communication and information. Most important, they do not demand interactions with humans. In fact, they don't even look at humans, nor do they need to be looked at. They function on their own. I hoped that observing social behavior for Carl might add to a deeper understanding of the how and why of social interaction than any verbal explanation.

When Carl came to his next session the Antquarium was on the table, in front of his seat. We were now a Quartette, Carl, his mother, the ants and me. Carl sat down and, it appeared to me, facted as though there was nothing unusual on the table. As in the past, he waited for some suggestion. I, too, waited a little and finally asked him, “Well?” In his metallic voice, Carl responded, “Ants!” He had clearly noticed the ants. So far as I could tell, there had been no sign of recognition on his face. This had been a common occurrence with Carl. He already “knew” something, but others did not expect him to know it. No doubt, he experienced adults as constantly trying to tell him things that he already knew. He provided no clues as to what he already did know and other remained unaware of his participation in this dilemma.

Carl later “could not only pay attention and listen, but could convey to the speaker that he was listening [and these] interpersonal skills were generalized to his classroom behavior.” He asked for pets at home, and become more engaged in school and socially.

Neither of these stories are dehumanizing, and in fact during Carl's story more disdain is had for his inattentive mother who would fall asleep during Carl's sessions.

The language in the paper's abstract which was bastardized on Twitter is echoed in its conclusions, and I'll share that here as, for me, the final nail in the coffin of autism-Twitter.

Carl and Sam both fulfilled the diagnostic criteria for Asperger's syndrome. In addition to verbal communication, with these two patients, our approach included attention to gestural, facial, nonverbal, symbolic, and vocal displays. Specifically, we used the insect imagery in one treatment to further that patients awareness for his growing emotional repertoire and in another treatment as insect cotherapists, to engage nascent affective resources. For both patients the ants as either a symbol or a concrete presence moved the treatment towards a dynamic relational perspective. Both found a transition from their rigid and stereotypic non-human world to the world of feelings and people.

We speculate that for both, Carl and Sam, emotional life began on an ant farm. The ants presented each patient with a simple nonthreatening social structure that did not call forth terror or feelings of shame about their lack of comprehension about social relationships.

Neither the paper's abstract nor its conclusions speak of autistic people as non-human.

When the former speaks of “bridging from their nonhuman world to the world of feelings and people” and the latter of “their rigid and stereotypic non-human world to the world of feelings and people” the authors are describing the world of these autistic people, not the autistic people themselves.

Sam and Carl both tended to operate in a world without people, a non-human world; then Sam dreamt of an ant farm, and Carl was excited by an antquarium.

Through these non-human worlds, either devoid of people or enlivened by creatures who weren't people, Sam and Carl—consistently described in effusively-human terms by the authors—each found ways in which to form new connections to other human beings.

This sort of misreading of intention and language isn't limited to autism-Twitter. It's something I get angry about in political discussions there as well, but my daily well-being really is only directly impacted by what I expose myself to when it comes to discussions about autism.

There are plenty of insidious ways in which autistic people are discounted and disparaged by the medical and mental health professions, as well as by neurotypical society as a whole. I don't need to watch autistic people invent false examples, or attribute to malice what can be explained either by lazy or unclear language on the part of professionals or by misreadings by autistic activists.

Twitter, and for short while Medium, have been instrumental in my figuring out how to navigate my midlife diagnosis.

Like so much other spaces on Twitter, however, it appears that autism-Twitter is becoming too toxic a place to be. There are real fights to be fought, and I can't anymore watch the ones that seem to have been ginned-up for maximum engagement.

Or is that just another example of attributing to malice what instead can be explained by something else.

#Autism #Dehumanization #Psychotherapy #SocialMedia #June2019

Likely it's something to do with my inability to sit still for them without becoming distracted, but podcasts really are not my thing.

However, I do listen to two: The Good Place: The Podcast (because, you know, it's motherforking about The Good Place), and Technopolis, (because I have a passing interest in urban planning going back to when I covered politics and planning here in Portland). I listen as I'm waking up in the morning; it's the closest I come to being a captive audience.

The latter is self-described as “explor[ing] what needs to change for tech to help solve more problems than it creates” and tends to feature to sorts of people you'd expect for the subject matter from all along its spectrum of opinions.

This month, however, things took a turn.

Technopolis hosts Molly Turner and Jim Kapsis recently sat down with Hannah Beachler, production designer of Black Panther to discuss the Golden City of Wakanda.

For as long as there have been movies, there have been fictional visions of tech-forward futures. But few cities on film have inspired the awe of urbanists like Black Panther's Golden City, devised by production designer Hannah Beachler. In this special bonus episode, Jim and Molly talk with Beachler about the role tech played in her meticulously crafted urban vision. Beachler, who won the Academy Award for her work in the film, helps us understand why the Wakandan city feels so right—and what she thinks some real-life tech-led urban designs are getting wrong.

In what easily is the most compelling and human episode of Technopolis to date, Beachler seems to care more about people's lived-in lives on a visceral, experiential level than almost any urban planning person I've ever heard from. Tellingly, I was struck by how differently such issues are discussed when the guest is neither techbro nor technocrat but instead an artist.

(Had I a time machine, I would go eavesdrop on every single conversation Beachler ever had with director Ryan Coolger about designing Wakanda, and I desperately want to see the 500-page design document they drafted to detail life in the Golden City.)

I don't mean to keep coming back to it, but later I found myself again thinking about that notorious Rolling Stone interview with Jack Dorsey in which he explained that Square runs so much more smoothly than Twitter because it “has to” since “you’re dealing with people’s money” and “it's extremely emotional”. Yet he never speaks in such animated and humane terms about people having to suffer harassment and abuse on Twitter.

Something in the way Beachler talks about Wakanda, a fictional city, is more suffused with an abiding respect for people and the environment in which they live than anything in the way Dorsey talks about real life.

Anyway, the point is that while many of the other Technopolis guests have had deep curiosity about cities and technology and livability, few if any of them spoke with such meaning and passion, even when truly believing in the mission.

Beachler talks a lot about designing a city that was focused on people rather than on technology, despite Wakanda being a society more technologically advanced than the outside world, and about drawing not just from African traditions but specifically from some of her own African-American traditions such as the cultural (and, per Rosa Parks, political) significance of the public bus. Wakanda easily could have had self-driving buses, she points out, but it doesn't. Partly because that's a job someone can have and partly because of the human connection that exists because of it.

There's a great bit about Steptown, that neighborhood we see full of people walking and shopping and hanging out and, yes, taking the bus (and whose name I didn't know until this podcast). They talk about how the streets there are not paved, and how that was informed by Beachler's observations about how when cities flood there is nowhere for the water to go, because everything is pavement and concrete.

I don't want to recap the entire thing, although for me it's definitely worth a second listen. I just want to really drive home how intensely curious was this episode.

One other thing struck me afterward was I started thinking about Albina Vision, an ambitious proposal to resurrect a historically black neighborhood here in Portland (“a district that was once the heart of Portland’s black community,” in the words of Bridgeliner) which decades ago was razed to the ground in favor of an interstate highway, a sports complex, and a hospital.

The idea, at least as conceived today, isn't just to bring traditional urban redevelopment but to build upon the displaced history, as described last year by Rukaiyah Adams.

“Decades of intentional design decisions choked the vitality out of Lower Albina,” the 45-year-old Portland native says. “We designed the intentional displacement of whole communities. We designed highway systems that prioritized automobile transit. [Now] we must also intentionally design inclusion and connectivity.”

Adams was a little more deservedly blunt in that Bridgeliner post from just a few months ago.

“No one factor caused the transformation of Albina, but racism was probably the thread that carried through all of them,” Adams said. “As Portland evolves, we have to learn how to grow and hold onto our urban ethnic history and not just wipe it out.”

Getting caught up on the Albina Vision project, I started to want the designer of Wakanda's take on the whole thing. It's not the Golden City, and Portland can't draw upon the vast technological and financial resources of a vibranium mine, but I feel like Adams and Beachler would have a lot to talk about.

#Cities #Films #Podcasts #PopCulture #UrbanPlanning #June2019

The hour before midnight during a heatwave seems the perfect time for a bit of gentle, low-key identity crisis.

I'm overselling it there, as there is no crisis, per se, but tonight I've been doing a bit of waybacking to the golden age of blogging. The content of a dozen or so blogs which still exists in my old Blogger account led me to hit up the Internet Archive to get a decent look at one of them in particular.

Once upon a time, I was part of what I'd termed a “gang blog” centered around discussing the ideas in David Weinberger's book, Small Pieces, Loosely Joined, along with Weinberger himself, Gary Turner, Jeneane Sessum, Kevin Marks, and several others.

I don't think meaning happens. I think context happens. I think framework happens, mainly because we don't live in a world populated only by ourselves, and so there's a grid of Other People's Meaning constructed over time and through which we move. But that's still not inherent in the blank template of the world.

What this lack of inherent meaning offers, IMHO, is the notion of responsibility. We are responsible for what we make and do here, and for the impact [it] has upon ourselves and others.

For me, this is precisely analogous to the contact offered by the Web. [That] same sort of framework exists here, and again created in an on-going fashion by the people here, but there is still no meaning save for that [which] we ourselves decide upon.

Reading words I wrote seventeen years ago, I find two seemingly contradictory things of note.

First, I guess I still agree with the above (although I laugh a bit now that it was sparked by a quote from Hakim Bey), and I do find it sort of weirdly resonant in this current moment of the people behind the companies that eventually won the web taking insufficient responsibility for the ways in which meaning is being constructed here.

Second, I don't really recognize that person, that me who wrote that. I can't conjure an internal sense of who he was, or what he was doing when he was thinking these things, or what his life was like, or how he ended up on a blog with a number of the web thinkers of the day.

These things combine for a good example, then, of what I meant when I reacted to that research about what psychologists are terming derailment: I do not have “a constant feeling of me-ness that transcends the various chapters” of my life.

Tonight's bout of waybacking comes across, then, as rifling through the forgotten papers of a stranger.

I know this was me, but I can't feel him. It was some other me, and there have been who knows how many others of me in between, and who knows how many others of me still to come.

#Blogging #Identity #Memory #Self #Web #June2019

Over the past few days I've spent some time tweaking the CSS here to get away from the default WriteFreely style, and I should give some credit for various bits of inspiration to Micro.blog, Substack, and Svbtle, each of whom, in different ways, informed how I thought about past minimalist approaches I've taken, extending all the way back to blogging's golden age.

#Blogging #Design #Meta #June2019

While I only used Write.as as a springboard to starting up Write House, I do still keep an eye on its public feed, and I'm pleased to see that Inquiry finally outed themselves as something a dick. I'm not even sure where to begin, except to disclaim that as their word, not mine.

It's not just the regressive (or is it merely immature?) sense that if you don't know how to run your own web server you shouldn't get to have a voice here, although I certainly remember having to endure the “wisdom” of such types during that Eternal September—which did coincide with my own debut on the internet, although not via AOL.

It's their clear sense of self-impressed smugness, I guess. It's also the enforced ahistoricity of it all.

So I get a sadness-tinged kick out of more technically astute web technologists bemoaning what “has happened” [...] to the web [...], when it was the selfsame technologists that lowered the bar of entry so any [...] moron could participate – including in originally unimaginably vile ways.

The opening of the internet to the masses is not what's gone wrong with the web. What's described above is not “what happened”, or what is happening.

While there's surely no shortage of internet gurus who somehow succeeded in building the web while also completely managing to get wrong their responsibility to help, well, manage it in a human and humane way, that's not because all the “morons” got access to the printing press.

The problems of the web are design issues, and they are community management issues. They can be addressed and attacked through design and through community management, not through some sort of unspoken latent regret that the unwashed and unwanted haven't somehow been purged.

There's a generally skewed perspective that hovers behind all of this disgusted snarling at the “shit-for-brains” among us, and Inquiry brings it forward.

I think “conservatives” fundamentally believe there are better and worse people, and it's best to not let the latter foul the water of the former; conversely, “liberals” seem to believe shit-for-brains somehow magically transmutes to intelligence when mixing the two.

This perhaps accurately, if facilely, describes conservatives but it's the conservative's bastardization of defining liberals. What matters, though, is that Inquiry highlights their own perspective here: “there are better and worse people, and it's best to not let the latter foul the water of the former”.

Well, no, this isn't merely conservatism being described; it's fascism, and Inquiry has alluded to the instinct before.

But seriously: what more than anything else more quickly and/or often ruins a good thing?

The answer to this rhetorical, they offer, “is likely no longer politically correct to simply come right out and state”. Anyone who uses the term “politically correct” with a straight face almost certainly leans one way, and only one way, when it comes to respecting other people's rights to participate in society.

It's true that I somewhat suspect, as suggested above, that the issue here might simply be one of immaturity, which is independent of age, rather than one of a true psychic violence against the huddled electronic masses.

But it's still just as ugly when expressed.

#Internet #Web #June2019

The ridiculous thing about the story I told the other day is that the incident described is a manifestation of something I'd previously established: that when faced with a stressful bit of socially performative communication, I defer to the other—even if it means agreeing to something that will be even more stressful, or even damaging.

It was a central part of how last year's vocational rehabilitation job placement process went so bad, so quickly. I don't know why it didn't occur to until today that this was an example of exactly that. Or, rather, an example of managing to avoid exactly that.

What was different?

For one thing, the ways in which this cropped up during my job placement all involved dealing with an authority figure of one sort or another, someone who could determine the course of my life in direct and profound ways.

The other day was “just” an interaction with a server at a restaurant, a dynamic playing out on a much more level field.

I've written before about how there are many situations, when you have an autistic brain, that go stimulus-reaction-response before you even know what's happening. Typically cases where the number or intensity of stimuli is high, where aspects such as dealing with an authority figure or being in a small, suffocating room exacerbate the situation.

In less stimulus-heavy cases, such as simply waiting to be seated for breakfast at a local cafe, there's room to breathe between the innate reaction and the outward response, and time to breathe means time to think, and so time to make a conscious choice.

#Anxiety #Autism #Communication #Conflict #June2019

I've been interested for awhile now in the potential relationship between autism and trauma, mostly positing that the various sensitivities peculiar to the autistic brain might make them more susceptible to what are just every day experiences for neurotypicals being recorded in a traumatic way.

This week, the BMJ published an editorial—“Neglected causes of post-traumatic stress disorder: Patients with psychosis, other delusional states, or autism are also at risk”—which at least tells me, once again, that I'm not the only one thinking about this.

Finally, people with autism spectrum disorder (ASD), a neurodevelopmental condition associated with atypical processing of the social and sensory world, often show intense threat responses to apparently harmless situations, such as changes in routine, social situations, or sensory stimuli. ASD may be associated with unique experiences and perceptions of trauma.

Reduced emotional coping skills place people with ASD at high risk of mood and anxiety disorders after exposure to stressors such as social misperceptions, prevention of repetitive or stereotyped behaviours, and aversive sensory experiences. Among people with ASD, in appears these atypical stressors may be associated with PTSD symptomatology as often as objectively traumatic events.

“Effective treatment of these neglected groups,” the editorial suggests, “requires the same trauma-focussed therapies that are recommended for PTSD after objectively traumatic events.”

(There's been some pushback on the issue of subjective trauma versus objective trauma. There's a semantic thing here that I'm not convinced somehow is underplaying autistic trauma or overplaying other kinds of trauma. Rather, I think it's fine to just pass it off as a sort of normative baseline that says, e.g., serving a tour of duty in a war zone is “objectively” traumatic in a way that difficulties with, say, socially performative communication is not. As in, both traumas are “real”; it's just that one is going to be more naturally traumatic for a wider range of people.)

What's important here is the argument (in my formulation anyway) that the autistic brain might be registering stimuli via methods or channels analogous to those by which so-called objective trauma is registered by neurotypical brains, and due to the autistic brain's hypersensitivity to certain forms of stimuli, this happens at a lower threshold than typical.

I've talked before about how this has implications for the psychotherapeutic process for autistics.

To wit: if our hypersensitivity to stimuli such as socially performative communication is resulting in such experiences being registered in our brains as trauma, how must therapy—a socially performative endeavor—be adapted or altered in order to treat us, so that it is not simply adding to the trauma?

Note: Links to entires on my previous blog will up updated to entries here on Write House once WriteFreely has WordPress imports.

#Autism #Psychotherapy #Trauma #June2019

It doesn't happen very often, because I hate the idea, but sometimes I drop whatever book I happen to have started reading. Surprisingly, the latest was The Wandering Earth, a collection of stories by Liu Cixin, whose Three-Body trilogy I loved. Ball Lightning was pretty good, too.

It was the third story that stopped me. Immediately a slog, it erased whatever motivation I had left. The title story was good, if entirely and completely different from the adaptation on Netflix, while the second story was no more than okay.

His books, I've found, can be very different depending on who produces the translations.

The first and third books in the Three-Body trilogy (technically the Remembrance of Earth's Past trilogy) were translated by Ken Liu and they really sing. The middle book—the one which gave me existential dread—was a more workmanlike but perfectly fine translation by Joel Martinsen.

The Wandering Earth collection is an even more dry, even clunky, translation by Holger Nahm.

It's possible the wall I hit was one of translation and not one of authorship, but unless a more adept translator tackles some sort of re-issue of this collection so I can try again, I go no further.

#Books #Reading #Translation #June2019

Decades ago, likely sometime in the 90s, I ran into Mary MacLane in the pages of a book called In the Realms of the Unreal, an anthology of “insane writings”.

Not long after, sparked by finding a first edition of her debut, The Story of Mary MacLane—By Herself, in a used bookstore in upstate New York, I dove head-first and in true autistic “special interest” fashion (although this was decades before I knew I was autistic) into intensive research for months and months, including contacting the Montana Historical Society and receiving a small stack of material from them.

Somewhere I think I still have both the first edition and the short stack of historical society material.

Not long after, I even found, I think in the New York State Library, a copy of a satirical, anonymous “reply” from the devil she spoke of so much in her first book. I noticed today that even that has joined most of her own work in being made available for Kindle.

Every now and then, she comes to mind (today, it was sparked by something someone said on Twitter that reminded me I own a first edition of Franny and Zooey), and I check to see what the internet has revealed since the last time.

Well.

Here we are in 2019, and MacLane actually has an entry in the Encyclopedia Britannica, of all things. There's even an entry at the Women Film Pioneers Project out of Columbia University.

How times change.

#Authors #Books #Reading #June2019