Autistic burn out PART 1
The first signs and the acute signs of of autistic burn out:: ORIGINALLY PUBLISHED JULY 15th 2024
Dear soft heart,
In 2022, I started noticing myself not feeling very well. I had a lot of stressors that year and they spanned a few life sectors – most notably relationally and familial.
Still, I carried on and finished the year. I had also a lot of beautiful things in my life, for example, in July 2022 is when my memoir Can You Turn The Lights Off? was released to the world.
I still had most of my function at this point, meaning I was able to do all the basic self-care things with ease (shower/bathe, brush teeth, brush face, brush hair, all of that). I was able to cook for myself and often for loved ones, and eat normally. I could still maintain a significant level of exercising, for example, I was really into forest hiking and I had a pretty consistent walking practice, and I even did yoga a few times per month. I went biking with a friend that summer. I could drive myself to appointments consistently. My cognitive ability and focus had not diminished, and I could do things like work, and read and properly digest and remember information well most of the time. I often spoke to friends for multiple hours on the phone a few times a week and did not suffer from the stimulation of it all most of the time– in other words, I could keep up with multiple people and their lives meaningfully. Bottom line: I was starting to feel off, but it did not show for more than a few days at a time. In general, I was still keeping up.
Biking, summer 2022 with a knee brace. I noticed in 2022 as the autistic burn out was starting to take a hold, that my hyper mobility symptoms were getting more pronounced for the first time in a couple years - I had a lot of joint instability for example, and ended up with a dislocated knee after a hike. However, I look generally fine, and you could not guess I was already dealing with some symptoms unless I told you.
Despite the fact that I could host a friend at my house, or go paddle boarding and swimming at the lake, attend the farmer’s market each week during the summer, and even go to the restaurant on a patio a few times that year, there were early signs of burn out for me, and I have documented them below.
*I am writing out my first signs of burn out, which may also be yours, or might not be. Feel free to add to this list.*
Sleep issues - for me it’s insomnia. My sleep is the first thing to be disrupted.
Ongoing reduced tolerance to stimuli - therefore, heightened sensory sensitivities. I remember feeling this distain for very random smells that just felt so overwhelming to me throughout the year– like a cardboard box. I remember saying at one point that I felt like I had no skin.
Frequent or constant ringing in ears.
Post exertion malaise after certain mental or physical exertion.
Occasional migraines, and joint and muscle pain flares.
Quicker to meltdowns and shut downs & more frequent meltdowns and shut downs.
Needing tylenol to have conversations and to sleep (I know this is a weird sign and maybe super specific to me, but in 2022 I started taking a tylenol to be able to sleep some nights and keep up with having conversations with friends, and also just like… work and go to appointments. It helped with brain inflammation I think - also this is purely anecdotal.)
Initially, my lack of sleep was the thing that was bothering me the most. I had three different patterns showing up, usually worse during PMS and they went like this:
1. Get to sleep around 10 pm and wake up between 1 and 2 am and not be able to fall asleep at all until the next night – horrible obviously.
2. Unable to fall asleep until about 4:30 or 5 am and sleep until about 8 am. Also equally horrible, but somehow the days aren’t as long in this scenario. Everything hurts though in this scenario.
3. Go to sleep around 10 pm, wake up at 2, stay awake until 5 am and then fall back asleep for an hour or two. The best option but still… frequent nights for weeks or months on end of this, you get tired.
Increasingly, I also began to track that my sleep was immediately disturbed after too much stimulation during the day that were coming from various demands, some were work related, others were private relational matters, some were traumatic things happening inside my family web related to addiction.
But then… I’d get a string of good nights, hormones would be just right, I tried a supplement that really worked, or everything would be chilled out for a bit, and it’s like I got refuelled again and I was able to keep pulling off functioning.
I did not initially track that I was heading toward a catastrophic burn out because the previous two burn outs I had lived in my life did not happen gradually. They happened fast and furious. So I assumed I was just cycling through more shut downs than usual – which is actually a sign of autistic burn out starting to take a hold, but at the time, I didn’t realize that fully.
In retrospect, I can see that what was happening is that I had built a lot of nervous system resilience for years since my last burn out that I was able to come back to my window of tolerance quite easily after stressors and triggers during a particularly hard year. However, the more time went on, and the more stressors and triggers that cause autistic burn out I encountered, the more I was pilling on symptoms.
The end of 2022 arrived and 2023 began and ushered with it, a huge bone crushing, soul crushing, fatigue.
At this point, I was starting to be scared – this was starting to feel like the other burn outs I had had before. So I reduced work demands – I stopped facilitating group coaching programs, and I stopped offering new classes for example. My last ones ended at the very end of December 2022.
By the end of summer 2023, my symptoms were so bad that I could no longer keep up. At all. Even with reduced work demands.
And so, I experienced something many people in acute autistic burn out go through: loss of job either through being fired or quitting, or medical leave, in many cases unpaid.
In my case, since I’m self-employed and have been for a decade, I went on unpaid medical leave. I stopped coaching and mentoring entirely. It was devastating– both for my identity – I had been doing this work daily for a little over 9 and a half years, and I genuinely loved the work, but also financially, I had never been anything but financially independent since I became an adult.
In the winter of 2024, I had many mast cell reactions, where my heart would beat very fast even if I was sitting or laying down and not moving very much. This is a picture of my blood ox being normal (98) but my heart rate going at 143 sitting in bed - not engaged in any activity. Ouff. Those MCAS spells are annoying and happen much more frequently in acute burn out.
When I moved into acute autistic burn out, this is what it looked like:
*again my signs, feel free to add to list*
Severe sleep issues – no longer on and off insomnia in spurts, frequent and often times nightly insomnia, therefore sleep deprivation
Frequent illness and uptick or relapse in chronic health condition symptoms, for example chronic low blood pressure which leads to feelings of dizziness, fainting, and added fatigue; night sweats; hormonal issues; MCAS; POTS
Frequent migraines and visual disturbances triggered by light stimulation multiple times per week (often surprised how little it actually takes to trigger a migraine)
Continual ringing in ears
Explosive meltdowns that included hurting myself at times
Severe sensory pain from inputs such as sounds, touch, smells, taste, lights
Vestibular issues – dizziness, nausea or vomiting from movement, like being in the car
Proprioception issues- balance issues for example. I fell down my stairs in November 2023 and got a very severe wrist, rib and shoulder injury as a result that I am still trying to heal from now
Exhaustion that affects basic function for example: Unable to stand for long periods of time to cook
Joint and muscle pain – no strength in hands, inflamed feet and ankles, knee pain
Several other loss of function which leads to an increase need in caregiving: no longer able to exercise, driving becomes inaccessible, going to appointments alone no longer possible, no grocery shopping
Reduced executive functioning skills: planning, organizing, cleaning, forget it
Demand avoidance
The desire to isolate
Loss of spoken communication and having to communicate through writing especially during shut downs; selective mutism
Quicker to react disproportionally in emotional reactions
Severe anxiety for me this means severe uptick in OCD symptoms as well as panic attacks or GAD
Depression which can include suicidal ideation
Inability to mask – thus things such as reduced affect become evident - it might look like I am not feeling anything to someone else. If the person isn’t aware of my autism, they might not track my distress for example. I had a health care professional ask me a question and by my reaction, she took it as I was feeling calm about the situation, it was only later when I revealed I was very distraught by it internally that she realized I had reduced affect and she couldn’t read me accurately
As you can see by some of these examples, overall, skill regression - unable to complete tasks or engage with skills that were previously easy to do
So, when I say I’m in autistic burn out, this is what I mean I am experiencing on the daily. It’s clearly quite grotesque to experience even just writing it through bullet point form.
So what causes autistic burn out, and all these terrible symptoms?
There are great researchers studying autistic burn out, like Dr. Dora M. Raymarker and autistic people who are reporting on this and some of the common factors that can lead 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.
I can see that my first burn out that lasted a very long time – about 2007 to 2013 (about 7 years total) was caused by all 8 of these factors that were ongoing. My second burn out that lasted about a year in 2017 happened because of 6 out of 8 of these factors.
And my third that has been happening acutely for about a year now was triggered by cumulative and intense stress (factor one), lots of demands (factor two), and prolonged sensory overload and high masking in certain situations so that would make 4 factors out of 8 total.
Why I am sharing this piece about what causes burn out is to highlight that burn out does not occur randomly, we can track what caused it. Autistic burn outs are therefore not a mystery. This reassures me because it means my body isn’t just randomly doing something wild, it’s reacting to something that does not work for her, or is too much for her. When I can track what has caused my burn outs throughout my life, I don’t blame myself entirely anymore and I know that my body is not betraying me either.
There are also times in which I’ve experienced some of these 8 factors, even together, and I did not experience burn out.
For example, when my ex-partner cheated on me (intense stress, sudden change in relational status, home and living situation, etc), I did not go into burn out. Why is this?
There’s also been times in which I’ve had many demands – for example work was busy that year, like the years I wrote CYTTLO and also taught, did intuitive readings/ work, and coached at the same time, and I did not go into burn out either. Other years, I was teaching classes, facilitating group coaching programs and additionally working with many private coaching clients per week and I still had energy for walking and exercise and having a small social life filled with frequent dinners with friends. What was the difference then?
There were times where I lived in incompatible environments and had sensory overload due to neighbor noise or environmental noise and did not fall into burn out. There were also times in which I masked to survive and also did not succumb immediately to burn out.
So what gives? What is the difference between those times and the times where I did slip into burn out?
In part 2, I’ll give you my theory on this.