The map in and out of autistic burn out

Part 2 of my series on autistic burn out:: ORIGINALLY PUBLISHED AUGUST 7th 2024

Dear soft heart,

When people ask me what has happened to me in the past year, I suppose the short version of it all is that I didn’t have enough energy to meet the amount of energy life required from me. But that’s not the whole story. The story starts way before what happened to me in the past year, more broadly, what happened was that I don’t have the natural capacity it takes to survive the neurotypical, allistic, world.

I had to dip into my energetic, sensory and emotional overdraft many times in order to survive. This energetic debt of mine got so big that I couldn’t keep up with it anymore - and it took me out. Thus, I fell into my third, but most brutal, autistic burn out thus far in my autistic life.

I am not sure if I know yet what it is like to have a reserve of energy or capacity that is not the bare minimum that I fought to achieve through deep rest and days spent in dark rooms. It is foreign to me to be alive with a large bank of energy. I lived as though I had one though, not because I wanted to, or I was trying to prove something per say, but because I was trying to survive and it seemed like I had no other choice if I wanted to stay alive. Of course, I was also trying to fit in, and have friends, and have a partner, and have a career. When we say ‘I went above my capacity’, this applied to me very often as an autistic trying to keep up with an allistic pace of life. I usually went above my capacity, meaning I engaged when I had absolutely nothing to give, but for seemingly normal things everyone was doing that no one else around me noticed or thought of as particularly hard, because it was easy for them, and really difficult for me. For example, a birthday party, a multi hour facetime or coffee shop catch up or chat, going to a busy restaurant, sex/ being in a romantic relationship with allistic pace or expectations, having many friends and keeping up with everyone. You name it. I did it, but I probably didn’t have much, or any capacity for it a good chunk of the time. Especially if I had a regular or sometimes busy work load going on as well. This is masking. I didn’t want to be a terrible person, either literally or being seen as one, so I just kept on going telling myself I’d be okay.

The really hard thing about being autistic in my experience is you can’t expect yourself to be able to juggle many areas of your life at an allistic pace well without eventually burning out. But your non-autistic peers can do this without burning out, which creates this very ‘other’ing sensation. This is where in my viewpoint the whole “What’s wrong with me?” discussion starts internally. You start to wonder, why are they able to do it? Shouldn’t I be too? It must be me who isn’t trying hard enough, or who is being ‘too sensitive’, etc. Let me try, let me push through, let me be like the rest of them.

A little graph I made to show the potential differences between an autistic and allistic nervous system. An autistic one has less tolerance (less room) for stimulus before having a reaction comparatively to the allistic nervous system that can tolerate more stress, more change and more sensory information before feeling affected negatively. The concept of autistic masking is that we hide that we are negatively affected by stress, change and sensory information quickly, in order to survive and perhaps ‘blend in’ and have access to things that we also want: a career, relationships, etc.

Then what can end up happening is that the masking wears and tears at you until you’re quite literally missing a whole step in the stairs and you fall and you end up getting a wrist sprain, an AC sprain, and 3 dislocated ribs because your proprioception was off in that moment due to burn out and you couldn’t track yourself and your movements in proportion to the environment well. Autistic masking may not seem like a big deal at first glance but when it translates to tiring out your brain and your nervous system which affects your motor control & skills, and then you’re dealing with eventual physical symptoms because of it, it becomes a bit more significant to consider.

Nurseline community services based in the UK says this about how something like sensory overload, another contributing factor to autistic burn out much like masking, can lead to physical symptoms such as migraines or sleep disturbances:

Sensory overstimulation can lead to headaches, migraines, and heightened sensitivity to light, sound, and touch. The constant demands of navigating a world that isn’t designed for autistic individuals can result in emotional exhaustion, which may manifest as chronic fatigue and sleep disturbances.

I know for sure if I had been flagged autistic properly when I was a child or teen and actually lived a life in fair proportion and expectation to the fact that I am autistic, I would not be in burn out today. For context, I got officially identified as probable autistic in a health care setting for the first time in 2017, but did not start the official diagnosis process until 2020 because I was too scared of the stigma associated with autism and I feared consequences for my livelihood - internalized ableism fo show. My burn out now is 100 % related to how much I masked, how I had to stay in many incompatible environments and was never or rarely listened to when I requested what I needed/was treated as though I was too sensitive and needed to be able to tolerate the world better (like for example I requested to be home schooled), how many demands I had to take on that were above my natural ability and capacity as an autistic, and how much cumulative and intense stress, some of it trauma due to abuse, other due to change and sensory overload I had to live without proper consideration or support of my autism.

Identifying what caused my autistic burn outs throughout my life led me to wanting to understand what kept me out of burn out other times I lived some of the contributing factors.

The map in and out of the autistic burn outs

For a recap from part 1 from the work of Dr. Dora M. Raymarker, the common contributing factors to autistic burn out are:

·      Prolonged sensory overload.

·      Sudden changes or many changes.

·      Cumulative or intense stress.

·      Lack of support.

·      Masking.

·      Incompatible environments. 

·      Lots of demands.

·      Suppression of stims.

So we can assume that the factors that helps a person get out of autistic burn out are the opposite of the factors that cause it, so a list to remedy autistic burn out could look like:

·      Sensory friendly living

·      Stability and consistency

·      Low stress

·      Support

·      Unmasking

·      Compatible environments

·      Demands matching the capacity available

·      Stimming without punishment or shame

Understanding this gave me a map and made me realize several things. As I explored in part 1, I was curious about what tipped me into autistic burn out sometimes, and what kept me from experiencing burn out in times where there were contributing factors present. What was the difference?

The time my ex-partner cheated on me which caused intense stress in my life, and sudden change in my home, relational status and lifestyle. However, I had enough resource that the stressor and the triggers of the experience did not sink me into not being able to function anymore. I was able to pivot to supportive sensory places and people, and I also expressed myself a lot about the experience which helped. I noticed that this was a big factor for me, when I can’t express myself about what I am experiencing and I have to keep it all to myself and hold it all by myself and not receive any accommodations or help with what I’m dealing with (lack of support), I slip more easily into burn out. Which I am sure is true for most.

When I did have really busy work years but did not succumb to burn out, it’s usually because I had a lot of support (even if this support was paid, like house cleaners, being able to pay it was a resource I had), a compatible environment, I can track that I had relationships where I didn’t have to mask, and I could let out of my stims and be myself, as well as no extra sensory overload, sudden change, or intense stress that year, etc. The stability helped me stay afloat.

So it’s like I can handle some of these contributing factors to burn out, lots of demands for example, if all the other factors are not present. Or very little other are and a lot of supportive autistic elements are at play simultaneously.

However, I have a really hard time keeping up with demands when I am experiencing intense stress, change, sensory overload, or lack of support. I know I definitely cannot handle any demands at all in an incompatible environment.

This case study on myself reveals then that when several of these contributing factors of autistic burn out are present in my life at once, without accommodations is when I start to feel off and head toward burn out or go into burn out. This is good to know and explains why I went into autistic burn out at times and did not other times.  

A conclusion I can draw then is that the overall load of contributing factors that cause autistic burn out matter in terms of the likelihood of falling into burn out, as do current resources to combat the potential burn out.

Duration of stressors also seems to really matter and some contributing autistic burn out factors are less tolerable than others for me

Duration also seems to matter around stressors. A stressor like a family member’s addiction and all those implications are ongoing, uncertain, and complex, spiking in intensity, but something like a breakup happens all at once and then decreases in intensity over time. There are also some contributing factors to autistic burn out that I am able to tolerate for longer than other factors. For example, I can handle (tolerate) masking longer before I hit symptoms than I can handle an incompatible sensory environment before I hit symptoms. Since my tolerance for an incompatible sensory environment is not very high, whether that’s a person yelling or a place that is too noisy and bright, my symptoms happen quick and fast. So usually if I was in an incompatible environment, I left quickly (if I was an adult at the time) thus the duration was not very long, which could explain why I didn’t go into burn out in these circumstances as the sensory overload was not prolonged. Since times in which I masked could be tolerated longer before I hit burn out, I realized that if I had a break between these masked situations, let’s say in nature alone or with my special interests, it could have kept out of burn out in those times. It seems if I couldn’t leave incompatible environments, like when I was a kid in schooling systems, or when I can’t take many adequate breaks between masking, is when I went into burn out with these factors.

I was also really interested in how I got out of burn out the first two times, to try to find ways to reduce my symptoms in my third burn out now.

In the next instalment of this series, I will highlight what helped me specifically leave autistic burn out the first two times successfully, and kept me out of burn out for years, and what my current state is in the midst of my 3rd autistic burn out.