I’m An OT Who Coaches Burnout, Then I Hit My Own: What I’ve Learned Along the Way

Photo by Sinitta Leunen on Unsplash

I’m an Occupational Therapist who has worked primarily with autistic adults and teens for the past several years. Understanding your sensory needs, how to regulate your nervous system, and nurturing yourself through burnout are some of the main areas of focus, as you might expect. So why did I feel so ill-prepared when I hit my own burnout?

Here’s what I’ve come to understand. Nothing, absolutely nothing, can actually prepare you for when your nervous system just shuts down. I’m lucky that I recognized it for what it was, that I have the words for it, and that I know a lot about what the nervous system needs at this time. And yet, nothing but time could allow my own nervous system to get to a point of reset where I could even access most of my strategies. And the inner dialogue when feeling paralyzed in shut-down as you watch the world keep spinning? That hits hard and is dysregulating in its own right.

I wanted to share a bit of my story and the new words that I’ve found for the nervous system shutdown that happens in burnout. But first, I’ll share a bit of my own autistic identity story because, like many, I had trouble fully accepting my own identity and needs until burnout took me down.

It Took Hitting Burnout For Me To Fully Identify As Autistic

For a long time now, I have thought of myself as neurodivergent. I have sensory differences that make it harder for me to tolerate certain environments, and that requires a very conscientious pacing to avoid shut-downs. In the past few years, I’ve come to identify more and more with an autistic neurotype, recognizing that it’s not a coincidence that I enjoy working with autistic people, that I seem to understand them easily, and that there is an ease of communication there.

In fact, my work around other autistic people has helped me see my own autistic traits so much more, even though the Diagnostic and Statistical Manual (DSM-5), the manual clinicians use to guide diagnosis, would certainly fall short of giving me a label, depending on a clinician’s understanding of autism’s nuances that exist outside of the way the manual is written.

And I know how flawed the DSM’s definition of autism is. It’s written with merely an outsider’s view of observable autistic characteristics, which many argue is more representative of autistic trauma than autism itself. Either way, most clinicians have little understanding of the internal experience of autistic individuals that allows them to perceive its nuances beyond these trauma states, although awareness is slowly improving thanks to more autistic voices entering the conversation. Still, I struggled to feel like I could fully claim the label autistic, despite knowing all of this.

Certainly part of it for me was not wanting to feel disingenuous when my challenges and differences didn’t seem nearly as big as those I worked with (and my work primarily has been with later-identified folks who unfortunately get labeled as “high-functioning”…a term that is grossly invalidating to their struggles.)

And yes, I used to coach people through this same mental block of “not feeling autistic enough.” The irony here is that the desire for authenticity and genuineness is one of the more common and wonderful qualities of many autistic individuals. This means that the ill-defined clinical understanding of autism and our genuine nature leaves many of us with imposter syndrome about it...but I digress.

All of these conflicting feelings changed, though, when I hit burnout. I went from feeling “sort of” autistic to feeling VERY autistic. I know my story parallels many others’ who also found an autistic identity or diagnosis after hitting burnout. That’s one positive that we can often extract from the debilitating experience of burnout...it often moves the needle more towards acceptance of our identity and needs.

And I have a much deeper understanding of burnout now. A humbling fact since it’s something I’ve addressed clinically for years. Autistic burnout is still a relatively recent term and such a nebulous, intangible thing not unlike autism itself. It’s hard to put into words, especially at a time when words don’t come easily. And this makes advocacy nearly impossible at a time when we need it the most.

I feel like I’ve had the unique opportunity of observing burnout in my clients’ experiences and now in my own experience. I am going to try to put it into words as best as I can to help non-autistic people understand it better, and to allow others to use these words when it feels like an impossible task to explain why NO, they are not just depressed, but NO they cannot get out of bed or try to talk it through either.

We Are Less Conscious of Our Nervous System

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OK, I know I’m getting into a bit of a theoretical mindset, but bear with me for a minute because I think it’s important. Consciousness (or our explicit awareness of something) begets language, which begets more understanding of something, right? In other words, the more something exists in our conscious awareness or thoughts, the more ability we have to put it into words or build language around it, which builds understanding around the thing itself.

So one big challenge in understanding autism and autistic burnout is that it is largely based on nervous system differences, something that we tend to have less conscious awareness of or language for. Therefore, we are less aware of differences and capacity limitations in our nervous system than we are of our other bodily systems. Let’s think through some examples together and why autistic individuals can often do things sometimes, but not all the time...a concept that confuses the heck out of non-autistics.

Capacity Limitations in Our Nervous System

Much of the challenge that non-autistic people have with understanding the autistic experience is that a lot of things that we can do, we can only do sometimes. Sometimes I can explain a highly nuanced theoretical concept very articulately, and sometimes I struggle to get my words out or process language at all. Sometimes I can tolerate crowds, and sometimes they make me shut down.

This is because these things are driven by my nervous system, and my nervous system has a limited capacity. All nervous systems have a limited capacity; autistic individuals just have less capacity in their nervous systems, as well as more strain from trying to operate like neurotypicals or in environments ill-suited for them.

Really, when you think about it, our other bodily systems have limited capacity, too. Let’s think through another example together.

Sometimes I can keep an 8-minute-mile running pace, but not all the time, and really, not for very long. After a few minutes, I’ll start to feel my breath getting too short, my heart pounding very quickly, and my muscles growing very fatigued. Basically, my respiratory, cardiovascular, and muscular systems are reaching their limits, or their capacity. So I can only run like this sometimes, not all the time. I’ve got to pace myself better in order to be able to run for longer periods of time.

Burnout: When Our Nervous System Finally Shuts Down

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This is how I think of autistic burnout. We, as autistic individuals, are trying to run with the neurotypicals around us who seem to be making bigger strides and outpacing us without the strain that we’re feeling. So we push ourselves harder to keep pace because why shouldn’t we be able to run as quickly as them? We push and push SO much and SO often that we’ve become less aware of how much we’re actually pushing ourselves through the strain, until one day we just collapse. This is autistic burnout.

Some of us probably even felt the strain of our nervous system starting to shut down, but, hey, we’ve been pushing through all of that for so long, it hardly registers. The shutdown, though, you cannot miss.

You are no longer running, walking, or moving; you are just down. All of the things that felt hard or strained before now feel IMPOSSIBLE. You find yourself struggling to take part in your life at all. All of the things that we rely on our nervous system for, thinking, working, communicating, regulating our emotions, doing daily tasks, basically MOST life things, no longer feel accessible.

Ways Our Nervous System Acts Differently From Our Running Analogy #1

There are some important distinctions from our running analogy, though, that I want to make clear. Our nervous system has typically been in overdrive for months or even years before it reaches its full capacity limitation and shuts down. Just as it builds up over a long period of time, it takes a long period of time to recover...usually months, sometimes years.

Some spend most of their lives either in burnout or on the edge of burnout, only to get sucked back in. There are a lot of factors that contribute to this, one of those being how much we’re able to pace ourselves more intentionally moving forward, the supports that we have, and the overall acceptance that we and others are able to extend to ourselves.

More on this important topic in another article soon. It’s something I’ve been processing a lot recently, and I truly believe that the more fully we’re able to step into acceptance of our needs, the more we’re able to break free from the burnout cycle. But as my autistic people out there know, this is no easy task.

Ways Our Nervous System Acts Differently From Our Running Analogy #2

Another critical distinction, the wear and tear on our nervous system is cumulative; it cannot be conditioned like our other systems in this running example. We cannot “train” our nervous system like we might train our muscular system by running more. How do we know this? Because “pushing through” to keep up, to mask our needs and differences, to stay in the restaurant when our brain feels like it's melting, is what got us into the burnout mess in the first place. No shame in any of that, but no, it’s not good for us.

The Importance of Acceptance

We need to find more acceptance for ourselves, and our pacing needs to be able to find the long road where we can participate fully in our lives without all of the burnout stops and starts. Like most things, this is MUCH easier said than done. It’s actually incredibly difficult to shift your mindset and shift your pace, especially when others around you don’t get it and expect you to “keep up” with the rest, because you can do it sometimes, right? No, we need support, we need others to understand our nervous system’s limited capacity, and most of all, we need acceptance.

Without these things, especially acceptance from ourselves and others, we will continue to feel a constant internal dysregulation and shame for not keeping pace with others, trying to keep pace off-and-on as our capacity ebbs and flows, and wind up back in burnout again. More on the burnout loop topic to come soon. And if you’d like to read more around the topic of finding a fuller or more Radical Acceptance of neurodivergence, check out my recent article on the topic linked below.

And to all my autistic people out there who have learned all of this the hard way, you are seen, you are valued, and you are worthy of being truly YOU.

Warmly,

Rachel

kindculturecommunity.com

Acceptance is not easy to foster in ourselves. Surrounding ourselves in an autistic community can help. If this is something you’re interested in taking part in, I welcome you to explore our website :)

[embed]Radical Acceptance for Neurodivergence-AKA Why Autistic People Are Like Axolotls So why does acceptance need to be radical?medium.com