Anxiety: A Lot of Words About a Troublesome Word

This has been a tricky post to write. I have been endeavouring for a long time to convey these ideas, and I can never seem to get my vocabulary right. I've had a few conventional professionals look at me like I've grown an extra head when I've tried to articulate some of these thoughts. One even rolled their eyes me. At that point, I took it as a compliment, given our irreconcilable philosophical differences. Other people have provided words and analogies to help frame some of my feelings on the topic.

But really, I'm just left with questions.

Long before Oranguette received her ASD diagnosis, she was struggling with what was quickly labeled anxiety. I don't dispute that she struggles with anxiety, nor does she. Anxiety is also closely linked with a Pathological Demand Avoidance profile. So far, that all makes sense. However, conventional strategies for dealing with anxiety quickly proved ineffective. At first, this was nothing more than puzzling. Later, it became a far more serious problem when exposure therapy was pushed with terrible consequences.

The more I mull over the concept of "anxiety", the more unsatisfactory it becomes to me.

My experience is that, if a child presents with any sort of struggles in a mainstream school environment that don't result in disruptive behavior, a label of "anxiety" gets applied automatically. Any sort of "school refusal" quickly gets categorized as avoidant anxiety, and, equally quickly, unsupported exposure therapy will be pushed. You know, the drag-them-into-school-at-all-costs-and-they'll-figure-it-out line. That leads to my first question, a very practically-minded one: namely, how does a parent do that with a child (possibly adult sized, and stronger than the parent) who is in a full-blown autistic meltdown? I have asked that exact question, and never once received an answer.

I have some deeper questions about this sort of anxiety.

First, however, I will absolutely say there is a time and place to push through a certain amount of avoidant anxiety. Starting a new school, job, or activity that one really does want to pursue, say, but is nonetheless giving rise to butterflies and irrational(?) worries about showing up minus one's pants. That is the place for front-loading, pep talks, and outright compliance-based bribery ("we'll go for Starbucks after!"). Those strategies apply equally to all members of our little buffoonery, and have their utility.

But what about school refusal that slowly emerges over months, despite a predictable environment? Or so-called anxiety that persists well beyond the first few days of a transition? That, in my opinion, is not avoidant anxiety, but rather, distress. Distress at an environment that is not meeting my child's needs.

Incidentally, I think "school refusal" is a terrible term. I expect I would have a lot of anxiety if I were expected to enter a burning building without protective equipment or firefighter training, or the lion enclosure at the zoo. Does that mean I have "burning building refusal" or "lion enclosure refusal"? What if I, as an adult, am struggling with a job that I dislike or is not a fit, perhaps in a toxic environment. Do I then have "terrible job refusal"?

Where on earth do so many mental health professionals get the idea that mainstream school is automatically a safe and suitable environment for every single child? Did they ever attend a school of any sort themselves? Are they oblivious to the ballooning class sizes and failed attempts at inclusion in recent years that seem to have left even more children than ever (even "typical" kids) adrift and unsupported within the school system, and teachers overwhelmed?

When exposure therapy is inevitably pushed to address "school refusal", more questions arise. Exactly how long is exposure supposed to take? Days? Months? Years? At what point is it permissible to deem exposure therapy a failure? When it has resulted in self-harm? When it has resulted in suicidality? Why are we not concerned with exposure therapy teaching learned helplessness, and thereby causing depression and anxiety? Why can't we be proactive instead of reactive, and try to prevent a mental health crisis in the first place?

On a separate but related note, why would my child even have an ASD diagnosis if exposure therapy was a viable solution to her struggles? By definition, an autism diagnosis requires presentations like persistent social and sensory struggles (the former is necessary for an autism diagnosis under DSM-5; the latter is one of several optional presentations that contribute to a diagnosis). If those struggles were to magically disappear with a bit of exposure therapy, then (a) why haven't they until now? and (b) why on earth would my child even have an autism diagnosis in the first place?

To step back, why can't we pause and ask "Why?" when confronted with a child unable to bear setting foot into school? And why can't we collectively provide understanding and meaningful accommodations and supports?

So many questions.