Some Thoughts on Crisis Care

Not too long ago, I mused here about some my institutional encounters while trying to access mental health care for Oranguette. Since then, I've been mulling over some related but distinct thoughts regarding crisis care. There is a high degree of overlap between these topics, as crisis care in my experience is provided almost exclusively in institutional settings or by institutionally-affiliated teams. Nonetheless, I'd like to look at a few unique facets of crisis care here.

Mental Health First Aid

The crisis care that I encountered has focused almost exclusively on what I have heard described as mental health first aid. This includes things like the ubiquitous breathing exercises, endless "about me" art projects, piles of worksheets on emotions, and distractions to forestall self harm and suicidal urges, sometimes packaged into a care kit.

Now, first aid of any sort obviously has its place, including in mental health. However, there were some glaring problems with this mental-health-first-aid-as-crisis-care approach that, in my opinion, desperately need highlighting.

First of all, let's come back to the familiar mantra of Regulation Before Expectation. When in crisis, Oranguette was dysregulated almost constantly, and rarely in any state to be taught anything, let alone mental health first aid. Only once did we meet a front-line professional that understood the extent of her quiet dysregulation, and how to help co-regulate her. This person was a first responder, and the only person I have ever seen in this painfully long journey who was able to meet her with understanding, compassion, and skill while in crisis, and help de-escalate her. That is correct; the ONLY one. I never encountered anyone like them in an institutional setting. I don't think I've ever met anyone in an institutional setting who understood that someone can be quiet and dysregulated; that shutdown is the "freeze" in "fight, flight or freeze". It is astonishing to have to type that out, but I stand by every word. And that was the first big problem.

The second big problem was the lack of attention to root causes. First aid, including mental health first aid, is by definition a band-aid solution. Band-aids have their place, of course. Like any orangutan with kids, I go through a lot of them. However, my experience of mental health crisis care was of being bandaged up (and very poorly at that), and tossed straight back into the set of circumstances that caused all the injuries in the first place. All that first aid was absolutely pointless without addressing the metaphorical burning building that was causing the burns in the first place. To stretch the analogy further, band-aids do not fill the role of personal protective equipment, and do not prevent further burns and smoke inhalation (neglecting for now the question of why we are even throwing this hypothetical poor soul back into the burning building at all). Furthermore, after being tossed so unceremoniously back into the burning building only to suffer a repeat set of injuries, is it any wonder that such an unfortunate little orangutan would then declare band-aids and the care she received to be completely useless, and refuse to participate further? On the other side of that equation, Institution 1 later repeatedly denied us any help at all, since "it didn't work the first time". There was nowhere else to turn, and that utter abandonment and abdication of responsibility will always haunt me.

To return to the idea of root causes, they are, in my experience, determined by understanding the interplay between the environment (the burning building) and Oranguette's autistic presentation, which includes aspects like alexithymia, sensory issues, and social differences. During our first (lengthy) encounter with institutional crisis care at Institution 1, none of this was even touched on, except to instruct me to toss Oranguette back in the burning building of school no matter what. Exposure therapy, and unsupported at that, was the order of the day. And so the damage, with an added layer of trauma, carried on.

Even within the crisis care settings where we found ourselves, autistic differences were neither understood nor accommodated. Sensory rooms were nonexistent; the ability to leave an overwhelming situation was highly restricted; an inability to understanding or communicate emotions was labelled "uncooperative", as were challenges in participating in group therapy due to social differences. I can think of only one staff member who understood Oranguette's inability to engage with feelings, and that was a very temporary set of interactions. Oranguette at one point was told she was undeserving of care because of her "refusal" to fill in a worksheet asking about her feelings with anything other than "I don't know".

Much later in our journey, I found myself in a discussion with another part of Institution 1 in which a staff member made a statement along the lines of "oh, yes, we [in contrast to the crisis care section] are trauma informed in our approaches". I suppose I was expected to find that statement reassuring. Instead, I was just left with a deep sense of disbelief and revulsion as to what passes for crisis care.

Unsurprisingly, the majority of our crisis care experiences only made things worse, not better.

Structural Problems

Beyond those inherent problems with crisis care, there are systematic and structural problems.

We encountered a complete lack of continuity of care. Very few staff had any interest in Oranguette's history. If she presented in distress, she was assumed to have always been a problem child. If she presented as withdrawn or shut down, our parental reports of her dysregulation were disbelieved. During the lowest points, not a single person was familiar with her over a timescale of more than a few weeks. The only focal points or case managers were Mr. Orangutan and me. Many staff would only deal with us as parents as Oranguette was too "difficult". She was everybody's problem, and absolutely nobody's problem.

While languishing on various wait lists and stuck with otherwise completely inaccessible doctors, crisis care settings were the only place we could access medication management, and only upon admission, which is a horrifyingly high (low?) bar. It is a frightening and lonely position to be in, searching for internet advice on how self-manage complex medications that are obviously doing more harm than good, due to what can only be described as an incompetent and broken medical system.

Special Considerations Regarding CBT and DBT

Most of the mental health first aid techniques I have seen are based on standard Cognitive Behavioural Therapy (CBT) and Dialectical Behaviour Therapy (DBT). Both undoubtedly have value, and I want to be clear that I am not disputing that.

However, complications arise for autistic folks. I have already highlighted the difficulties of someone with alexithymia answering the question "how do you feel?", and how quickly a child gets vilified and labelled as uncooperative when they honestly do not know. Likewise, many autistic people struggle with the sort of back-and-forth, real-time, verbal conversations that are the backbone of conventional therapy. Oranguette, normally a star pupil, quickly felt as though she was failing a test that she didn't even know how to prepare for. Which, in a sense, was true.

Even the underlying premise of this sort of therapy is doubtful in the context of autistic distress. In the book Unmasking Autism, Devon Price writes:

Therapy that is focused on battling "irrational beliefs," such as congnitive behavioral therapy (CBT), doesn't work as well on Autistic people as it does on neurotypicals. One reason for that is many of the fears and inhibitions of Autistic people are often entirely reasonable, and rooted in a lifetime of painful experiences. ... Autistics don't need cognitive behavioral training to help us not be ruled by our emotions. In fact, most of us have been browbeaten into ignoring our feelings too much.

I am similarly baffled by the push to use so-called Distress Tolerance approaches on Oranguette (which I am ashamed to have consented to on one occasion). Here was someone who existed in a constant state of distress, who already tolerated intolerable levels of distress for months and years on end, until she finally couldn't any more. The last thing she needed was to be told her tolerance, not the distress, was the problem. Worse still was the admonition from a staff member at Institution 1 that she, then a pre-teen, would have to learn to endure all that distress alone, as her parents wouldn't always be around.

What sort of horrific life are we trying to inure our neurodiverse children (and selves) to? I hope Oranguette's life is instead filled with support, interdependence, and trusted people she can co-regulate with (and perhaps they with her), regardless of her age.

The Road to Recovery

Only after root causes were addressed, for example, by removing Oranguette from the inferno of her school situation, supporting her in accessing her feelings, and addressing medication errors, did some of the mental health first aid and a subset of strategies derived from CBT and DBT become marginally helpful. To be clear, none of these have ever formed the basis of her recovery. Instead, that foundation has been a neurodiversity-affirming understanding of herself as well as her relation to the predominantly neurotypical world she exists in.