Institutional Experiences

Our journey has taken us through a variety of settings, including several that I will just refer to vaguely as institutional settings, although they were very distinct environments. As the distance in time from our involvement with this collection of institutions grows and I can at least occasionally let go of the outrage, I find myself turning over a number of questions in my mind.

I am genuinely curious about things like the guiding philosophies, organizational structures, and protocols that I know must scaffold these institutions behind the scenes. Of course, I have no way of satisfying this curiosity, no inside connections to inform me, and so, this orangutan can only make observations and ask questions, and muse. I do think these issues are too important to be quietly swept under the rug.

The Bad

In many of my other posts I have not minced words about Institution 1, and I won't repeat those criticisms here. The specific problems we encountered are best highlighted individually and in the context of the greater points they illustrate. Let's just say there is a lot of bad out there. I am aware that our experiences at Institution 1 are by no means unique either to us or that setting.

Some of the bad manifested itself as harm disguised as help, with ill-informed and outdated practices and one-size-fits-all approaches (one wonders if they fit anyone at all).

Other aspects of the bad were suggestive of organizational issues. Having spent far too much time in Institution 1, I witnessed interdepartmental conflict and blame culture. I was -- and remain -- resentful of the boundaries that were crossed that exposed me to that sort of thing. Simultaneously, top-down policy seemed to dictate far more than it should have. I began to twig to this after a distinctive (and hilariously offensive) phrase was repeated to me enough to reveal itself to be part of a standard script. I still cannot figure out the intent. Paradoxically, there was also a complete lack of consistency in other areas, with decisions seemingly dependent on nothing more than the whims of whoever happened to be on shift. How can anyone navigate such a system?

Was there any good at all? I can think of a couple of compassionate front-line workers; a trainee who, for a brief moment, had the clarity to see through the script to the truth of the matter at hand (and promptly got thrown under the bus for their trouble); and another person who spoke anonymously and off-script and actually provided some insights. It was not enough, and I won't whitewash the experiences that we are still struggling to recover from.

Stepping back, I think the worst of the bad was the complete unwillingness to listen -- to Oranguette, and also to us as parents -- and the stunning lack of recourse.

Before moving on, I'd like to go off on a tangent with a speculation that has been nagging me for a while. On the surface, it seems uncharitable and petty, but I think it is too important to ignore. At least once, and possibly twice, I have encountered psychiatric professionals in an institutional setting who struck me as masked autistics. Now I may be completely off base, but I do have a little bit of personal insight here, so for sake of discussion, let's just allow for the possibility even if I am completely wrong. Note that I'm not talking about the openly neurodiverse professionals whose lived experiences inform their practice, and who have provided our greatest support in the community. I'm referring instead to people who one suspects of being deeply closeted; the type who perhaps went into the field to try to decipher or cure their own troublesome family members (or themselves), without realizing or wanting to admit that autism did not leave them untouched. These people have been amongst the quickest to vilify Oranguette and push a harsh, force-her-to-act-neurotypical approach. The analogy that comes immediately to my mind is that of closeted or so-called "ex-gay" practitioners of conversion therapy. Beware.

The Ugly

By ugly, I mean the messy middle where the good mixed with the bad. The places that got things half right and half wrong, or where insights and understanding met with failed execution.

We've certainly encountered the ugly in our journey, although perhaps less than one would imagine. Mental health approaches seem very polarized to me, either very authoritarian and prescriptive, with a fixed (and often incorrect) narrative, or flexible and patient-centred. Nevertheless, a couple of experiences do illustrate the "ugly".

In the first, we dealt with an institutionally-affiliated group that embodied a strange combination of meeting us where we were at and unceremoniously leaving us there. They presented an even odder mixture of advocacy and entrenched ableism. Good intentions collided with ineffectuality. They began with imposing many of the same tired and ill-informed narratives we'd already encountered, clutched their pearls in horror as we finally had the knowledge and confidence to chart a new path, and then prevaricated about complex cases and alternate approaches. Where was that honesty in the beginning? Yet I am still grateful that they walked beside us for a while and bore witness, if you will. Sometimes that is all that is left, and it matters.

Allow me to digress here (again, I know) on the subject of that pearl-clutching as we departed from their prescribed path. I am often struck by the contrast I have seen between mental versus physical health care. We have had our share of experiences with the latter, from the minor to the serious, and I can't recall ever hearing a doctor or nurse speak in absolute terms about a physical health concern. Standard treatments are offered with caveats, probabilities, and alternatives, and consent always feels informed and clear. Perhaps we have just been lucky. In contract, the psychiatrists and institutionally-based mental health professionals we have dealt with loved to speak in absolute terms. "Behaviour X needs to be addressed in manner Y", "you must always do A when B occurs", and so on and so forth, with dire warnings of the inevitable outcomes if those prescripts are not followed. Even medication is pushed with a much heavier hand and with little regard to side effects or monitoring. Why such a difference? Is it an attempt to impose control and assert authority when mental health is far more subjective and messy than physical health?

We had a second, far more ugly experience with yet another institution that I will not even bother to give a pseudonym. We were referred, only to be met with there with a statement that Oranguette was too complex for the program, but they wouldn't turn us away. At this unnamed place, we first encountered the beginnings of proper, meaningful plans, strategies and perspectives on our situation at the time that Institution 1 was completely unable to offer. We also encountered glaring staffing problems and absences, procedural and communication failures, and an abrupt and untimely and botched conclusion that would more properly be categorized as "horrific" than "ugly".

There is a moral here, I think, that if anyone offers a "favour" or offers to go "above and beyond", it will not end well. Are those really not whitewashed expressions about practicing out of scope? Why on earth should that be encouraged or tolerated? The road to hell is indeed paved with good intentions.

The Good

We haven't found much "good" in institutional settings, instead finding it here and there in the community. I'm not sure if that is a general trend, or just the roll of the dice. It is certainly not a good thing, as community and institutional settings and programs are not interchangeable. Both are needed, as are bridges between the two, which are sorely lacking. There was one exception, which I will recount here.

At one point in our journey, we found ourselves at what I will call Institution 2, and I am willing to put Institution 2 in the "good" pile. It was undoubtedly a much better experience than Institution 1. They showed a willingness to listen -- and, more importantly, believe -- our experiences. Flexibility was offered, next steps were planned, doors were left ajar, and there was interfacing with other institutions.

I am hesitant to fully endorse them, however. I suspect many of the positive aspects of our experience were due to a very unique and temporary set of circumstances. They freely admitted that had little understanding of neurodiversity -- which, in all fairness, was a huge improvement over the assumption that neurodiversity was irrelevant. This inadequacy was certainly apparent in one memorable and counterproductive staff interaction. I also suspect the accommodations Oranguette did receive were only due to incessant advocacy and the highly anomalous situation that existed at that moment in time. Furthermore, it was still an institution run by timelines regardless of outcomes, as they all seem to be.

Yet this place continues to be a small but essential and, much to my surprise, genuinely helpful resource. I am grateful that it is there, and for its accessibility. I want to (or maybe have to) believe there is some good out there, but the standard I am using to measure "good" is unfortunately much lower than it really should be.

Discouragement, Puzzlement and Hope

Discouragement is easy to find. The seemingly universal post-Covid healthcare and social services crisis is evident everywhere, with ever-restricted access to services and ever-growing wait times. Private supports are no less stressed than public ones. This isn't simply an issue of having to wait patiently. Unaddressed problems compound and escalate, sometimes becoming what should have been preventable crises. Care, such as it is, becomes reactive instead of proactive, with all of the personal and societal costs, financial and otherwise, associated with that.

I am also puzzled about so many aspects of the system. I am baffled by the staffing overlap that occurs here and there, that sometimes finds the same staff member working at different institutions with which we have had profoundly different experiences. Are variances in mandates, funding and governance models at play?

The institutions we have dealt with also served overlapping but distinct demographics. Elsewhere I have noted the disturbing possibility that different age cohorts seem to be viewed with unequal lenses. Perhaps teenagers seem to be close enough to adults that we allow them the same depth of feeling, complexity, and humanity that we see in our own adult selves? Are younger children (though old enough to no longer appear helpless and cute) more easily bullied by adults, and cast as misbehaving brats with incompetent parents? These suspicions are opposite to what I would have expected, but I cannot shake them.

I am still bewildered as to how all the pieces in the system are supposed to fit together. I have yet to meet anyone who has figured it out. I've received my share of knowing and validating comments from those in or adjacent to the system, sometimes cautious and veiled, but sometimes direct and cutting. Yet we are still struggling.

The last big question that leaves me dumbfounded is just this: how can every institution we have dealt with in the context of mental health be so ignorant of the significant overlap and relationship between autism and mental health? The disregard feels willful.

Nevertheless, change is afoot. I am aware of new programs and facilities. I am aware of one recent organizational training initiative; long overdue, but a start. I practically dropped my banana latte in shock when I saw a particular name appear as another attendee in an autism-related webinar I was participating in as a parent. I am not silent in my human form, nor are others with stronger voices than mine. And so I hope.