Whither Adjustment?
Saturday marked five years since Oregon’s disability determination process, during my first failed Social Security application in the wake of the disastrous and dysregulating Vocational Rehabilitation job placement, diagnosed me with Adjustment Disorder with Mixed Anxiety and Depressed Mood.
Soon after, I’d discovered that technically Adjustment Disorder comes in two varieties: acute and chronic (or persistent). My diagnosis, linked to the aftershocks of that job placement, was of the acute variety, which generally is viewed as lasting for around six months after its inciting life event.
It didn’t take me long to wonder whether or not living first as an undiagnosed autistic and then as a diagnosed but mediocre one who qualified neither as high support needs or savant polymath might not arguably yield a diagnosis of chronic Adjustment Disorder, in which the inciting life event is, well, life as such an autistic person.
That this weekend is the anniversary of my acute diagnosis is fitting because Friday during therapy I talked about how frustrating it is that my having had a generally good week with the only real dysregulating event being the tortuous light rail delays coming back from the zoo would be viewed by an outside third-party as me being pretty well-adjusted and so why can’t I take on more responsibility or obligation?
(Not for nothing, but at one point on light rail, there’s no question that once again I was Quinni on the bus.)
What’s not seen or recognized is someone who appears reasonably well-adjusted and not suffering precisely and solely because his resources and the demands being placed upon them are reasonably in balance at this particular moment.
This past week was a decent demonstration of one of my chosen metaphors, that of my having a decent foundation of independent, if not financially self-sufficient, living but one that breaks under the strain when I try to build anything atop it. Such as, not to put too fine a point on it, that job placement which sent me spiraling into sobbing fits and exhaustion.
It’s essentially taken me the entire five years since I quit that job placement to come close to restoring the stability of that foundation, which is why I’m capable of having a week as decent as this past one has been. That this would look from the outside like having the resources to take on additional, ongoing demands indeed is part of the frustration of living as a mediocre autistic in a surrounding cultural and economic environment that doesn’t understand such a thing.
There are times I hesitate to write about something like having a decent week precisely because I only can assume that it could be used against me as evidence that I’m simply not sufficiently disabled to require or deserve financial supports. That even in passing I’m pressed to consider that particular calculus only contributes to the stress.
(I’ve already in the past had people who were meant to help instead bluntly doubt me in ways that pretend that the power of the normative expectation to conform simply doesn’t exist.)
In many ways, I’ve become reasonably adjusted to being autistic in and of itself. What I’ll never adjust to, what I don’t know how to adjust to, is being autistic in a particular set of ways that isn’t read as being “disabled enough” when I know that acceding to the demands to be productive, the demands to work, eventually only would serve to shatter my foundations and ruin my life.
Of course, viewing the idea of persistent Adjustment Disorder through such a lens would implicate societal forces rather than merely individual deficit, which is something the medical model cannot abide. Were we to credit such a version of persistent Adjustment Disorder, nearly everyone with an existing DSM-V diagnosis likely would by default also qualify for such.
Jane:
As soon as I share about a systemic issue, people start coming to me for the solutions, causing me to feel the weight of the world on my shoulders. Expressing my boundary that is me not trying to save everyone in favor of caring for myself — because my job is to keep myself alive, not to save the world — returns isht like, “Then why are you saying it’s a problem if you’re not going to offer up a solution?”
Able-bodied people will legit say crap like, “Don’t complain about anything you’re not willing to change,” and then get upset when disabled people ask for accommodations.
We have something of a diagnostic language gap because some psychological conditions necessarily implicate systems and structures rather than only the individual. I’ve said before that psychology can be a tool either for social work or social control, and the fact that mechanisms such as the DSM primarily are firmly lodged within the limitations of medical model of disability, and therefore easily a means of social control, isn’t news.
I’ve sometimes in the past deliberately avoided using trauma language, for example, because I don’t want to come across as appropriative—and also because the aphantasia and SDAM essentially preclude things such as vivid recollection of events, although they get laid down in my nervous system in other ways)—but also because I consider the things I’d want to discuss to fall within the diagnostic language gap. My therapist and I have talked about chronic or persistent Adjustment Disorder, and I’ve sometimes used terms like Sub-Clinical Trauma and Complex Chronic Stress as ways of trying to get at what I’m trying to say.
This emotional labor generates a fair degree of tension between trying to be responsible for your own health and your own needs on the one hand, and maybe wanting to be partly responsible for solving the systemic barrier that other people don’t even understand, when reality is such that addressing the latter in fact can damage your capacity to address the former. Not to mention that it’s literally impossible for the individual being impacted by systemic issues to solve those systemic issues.
The past few months have made me feel like I can either choose to be physically healthy or psychologically healthy. At home I keep a strictish routine, exercise daily, eat a healthier diet, and rest a lot. While travelling I am constantly fatigued, my diet is dodgy, I walk a lot but my aerobic fitness suffers. The work that it takes to be a fit and healthy person doesn’t seem to co-exist in a world that requires me to be spontaneous, flexible and always on-the-go.
It’s difficult enough to grasp this for yourself, but imagine trying to fully explain this to someone else. I think about my occasional public transit trips across town to the zoo, which I consider a mental health activity. They are that, but by the time I’m taking transit back home I’m often nearing autistic shutdown, and any small hitch or snag at that point risks dysregulating me completely. Even if the shutdown mostly is physical, I’ve in a sense traded one kind of health for another, and the latter physical exhaustion sometimes itself can destabilize my mental state.
There’s no real shorthand language for communicating to people without this sort of experience just how difficult it can be to keep a constant, running account on various sorts of available resources and the various sorts of demands being placed upon them, whether by others or by yourself. It’s a common occurrence in autistic burnout, for example, that things you’d typically find restorative don’t any longer function restoratively, because they still take resources to pursue.
Where’s the diagnostic language for this? Where’s the statistical manual that defines and describes this resource calculus, and the ways in which normative expectations can, and often do, make it so much worse?
Sara:
However! This time I ended the unit with the big looming counter-narrative of disability laid out by sociologist Joseph Davis: “All Pathology, All the Time.” In the same decades of increased inclusion in schools, de-stigmatizing difference, better technology, and adaptive fashion, a paradoxical development has closely followed: not de-medicalization but rampant medicalization, a clamor for ever more labels and distinctions, an expansion of the medical purview over more realms of human variation and activity.
[…]
Why, in an era of rejecting scripted ideas of “normal,” wouldn’t we see at least as much contractionin medical diagnostics as we do expansion? Davis can only find three or four historical examples of de-medicalization in the last half century. The dominant trend is more: more labels, more professionalized treatment, more medical records making variation into pathology.
My desire to fill the diagnostic language gap is somewhat at issue with the fact that doing so within the current medical model of the DSM inherently requires medicalizing and pathologizing more behaviors. We already know that my lived experience tells me that the DSM pathologizes about autism feel a whole like actually being the things that allow me to accommodate, manage, and mitigate the other, actual issues that come with being autistic.
We’d need, in effect, a change in the perspective and point of view taken by the DSM in and of itself, to incorporate more overtly an expressly the idea that some purported disorders in fact are “merely” mismatches between a particular type of bodymind and the normative expectations of the society in which that bodymind exists. We’d need, in a sense, a sort of People’s Diagnostic Manual rewrite of the DSM that acknowledges the distinction between categorization meant to yield social control and categorization meant to yield social work.
Earlier this week when thinking aloud about taking opportunities to connect, Tracy reached for a quote but couldn’t quite place it or the source. Fortunately, Winnie literally had just referenced it so it was somewhere front of mind and easy for me to resurface.
When stumped by a life choice, choose “enlargement” over happiness. I’m indebted to the Jungian therapist James Hollis for the insight that major personal decisions should be made not by asking, “Will this make me happy?”, but “Will this choice enlarge me or diminish me?”
Last month when I wrote about reclaiming mediocrity I suggested that “you can’t have whole-personhood without then recognizing—indeed, yearning for—whole-personhood in everyone else”. What’s more: “ In the end, you can’t really be a whole-person without other whole-people. Not really.” This is what I think about when I think about enlargement versus diminishment: I’m not so sure you can enlarge yourself absent the enlargement of others. I don’t think enlargement can be viewed as about only your own choices for yourself.
This is a lens through which we can view the DSM, the medical and social models of disability, and the diagnostic language gap (which also should be considered a diagnostic framing gap). How do the ways in which we discuss types of bodyminds enlarge or diminish the people being described? How do they enlarge or diminish ourselves when we discuss them? How does it all enlarge or diminish society writ large?
Network effects mean that universal provision has the potential to be both cheaper and better for each of its users; the fact that everyone has access to it is almost a side effect. This also helps explain why the provision of other basic human needs, like food and housing, isn’t considered to be infrastructure: if your neighbors aren’t adequately housed, it doesn’t negatively affect your household in the same way as it does if they don’t have adequate sanitation. And unlike your electricity or telecommunications provision, your groceries generally don’t get cheaper if your neighbors eat too. Even though food and housing security for all is a public good, it’s “only” in the sense of having social value, not in the economic sense. I found this to be something of a grim realization because of how far it went toward explaining how Americans can take universal water provision, electricity, and roads mostly for granted while ensuring that everyone in their community is fed and housed remains an ongoing political and social challenge.
This is about infrastructure, but it’s clearly describing an incapacity to view certain things thought the lens of enlargement versus diminishment. The ways in which we systematize knowledge about different kinds of bodyminds itself is a sort of infrastructure than enables some actions and limits or inhibits others, enlarges some people and diminishes others.
But even networked infrastructural systems are still only going to be as democratic and equitable as the societies that build and operate them. We can deduce something about the power imbalances in a society by looking at what was built and considering who benefits and who bears the harms. In more equitable communities, more effort is put into balancing, distributing, or mitigating the harms, in lieu of simply displacing them. We can also interpret it the other way around: the less effort that’s made to address harms, the bigger the expression of power imbalance.
The DSM is part of our cognitive infrastructure. Like the physical infrastructure around us, the ways in which it’s designed and built—its benefits and who gets them, its costs and who pays them—all are determinative of what we get to build next. In the case of the DSM, it’s determinative of how we think about different bodyminds. Our options and opportunities are defined by the DSM, enabling some while limiting others.
Decisions made decades or even centuries ago […] shape not just the […] systems in use today but those that haven’t yet been built. That continuity means there’s a path dependence—that the kinds of systems we have today depend on the characteristics of the systems that came before.
In other words (sort of), per Chachra: “New infrastructural networks tend to be routed along existing networks when possible.”
The DSM is a chokepoint.
We have to follow it in order to make any claim of accessing services, but in its current form it diminishes rather than enlarges us. Most of what I consider to be the gap in diagnostic language and framing can be described by that distinction between social work and social control, and the difference between effectively placing emphasis on individual disorder while placing no emphasis on systemic issues.
Something more expansive and robust, the likes of a People’s Diagnostic Manual, would place much of its focus on that interface. Much as physical infrastructure comes with the questions of who benefits and who bears the costs, our cognitive infrastructure for describing bodyminds should interrogate what adjustments should be expected, and just who—and what—should we expect to be doing the adjusting.
Chachra:
My graduate work was mostly in materials science and engineering, where you learn that very few things fail catastrophically because they are suddenly overloaded past what they are designed for, the way my radius and ulna were. The kinds of gradual failures that I was studying are much more common, both in the body and in engineering structures. Structures frequently fail in fatigue, where low levels of stress lead to creeping damage that accumulates over time. Without careful monitoring, that damage goes unobserved and therefore unrepaired.
What the DSM as currently structured fails to capture is that placing the onus and burden entirely on the shoulders of the “disordered”, and none on the demands of normative expectations, itself of course generates “low levels of stress lead[ing] to creeping damage that accumulates over time”.
That can’t help but diminish.