Adventures in autistic burnout – What can my story (and research) teach us about autistic burnout?

Trying to fit in and become a teacher

In the summer of 2018, I didn’t have a ‘proper job’ and I was losing my confidence. It had been two years since the completion of my PhD. Despite a number of academic jobs at good institutions and a few publications, I couldn’t secure a job as a university lecturer. The bottom had fallen out of the market. I was just about making ends meet working part-time in shops and doing a bit of coaching for PhD students. I felt under pressure from family and friends to do something “proper” and stick at it.

A shot of some lesson planning materials from Becci's teacher training programme

I reviewed my skills and decided to apply to become a teacher in modern languages. I enjoyed educational theory, and I was a very good speaker of French and German. I imagined that I would be able to do this job even if it wasn’t my first choice of career.

I enjoyed the first few weeks of the theory part of the course. But because of my rural living location, the university couldn’t place me in a school that was near to me. This meant I started my teaching placement three weeks too late and somewhere that was difficult to get to.

I had a five-hour round trip on unreliable public transport to and from school every day. I had to get up at stupid o’clock to be at the school at time. I lived in a perpetual state of anxiety that the train would not come, and, often, it didn’t.

Before the end of the first term, I was completely and utterly broken – mentally and physically. The commute exhausted me. But, most of all, to my consternation, it turned out that I could not teach children…even though I had won an award for outstanding and innovative university teaching. No matter what I did, I just couldn’t get it right.

Particularly hard was that I felt the placement school did not follow the guidance about how fast I should pick up skills and responsibilities and how much actual teaching time I should engage in. I had several hours of contact time over-and-above what was stipulated in the handbook for trainees. When I complained about this, I was seen as difficult and uncooperative. I was told that this is what teachers do, and I need to be able to do it. My later start date was not taken into account. I became very despondent.

One day, it was clear I was becoming overloaded. My mentor said she was going to give me some teaching materials so that I didn’t spend so much time on preparing lessons. She gave me a set of slides to use with the children in an observed lesson that my university mentor also attended.

I received a very poor evaluation in the observation. I later learned that the activity I had been given was only a starter activity, designed to be used for a few minutes – the slides were not materials for a whole lesson and the children had become confused and bored. Sadly, I had failed to understand what I should have done. Even though I had tried my best and spent hours preparing for my observation, I had got the wrong end of the stick. (Of course, I now know that I needed explicit instructions and that what happened was not my fault).

At the time, I felt absolutely heartbroken. I didn’t know how much more I would be able to take of this.

The straw that broke the camel’s back

Approaching the Christmas holidays, I started to feel even worse. My stress levels escalated. I wasn’t sleeping. I overate constantly, scrabbling for energy and trying to clawback the enjoyment that was seeping from my life. I cried all the time and often burst into tears at work. I felt physically sick. I even felt suicidal. Once, I remember going to bed at 1am after doing lots of lesson planning, and then getting up at 4am to finish planning that lesson, so that I could leave for work before 6am. I got on the train to go to work. When I got off the train, I threw up.

I got back on the next train home. I remember that my then partner came to meet me, and we had a late breakfast and talked. Because it was clear I was ill, we agreed I would take a little bit of time off but there was never any expectation at this point that I wouldn’t go back once I felt better.

After the sick leave, I went back to work. The university was going to give me one last chance before Christmas to do an all-singing and all-dancing lesson for year 7s about Christmas in Germany. I threw myself into it, and really was ready to do a good lesson that I knew would work. Then, the day before, I began to get sick. I developed a temperature and my cheeks became flushed and my head hurt. When I got home, I tried to rest to be well for the last-chance lesson. I got up the next day with the intention of teaching but I could not go to work. I lay on the sofa, feeling incapable and stunned.

I never went back to that school. In fact, I quit my teacher training course and never went back to teaching. For several months, I didn’t work at all. I couldn’t. When I was ready to start working again, I could only work part-time, and for myself. I refused to do anything where my autonomy would be stamped on and kicked into submission as much as it was on that teaching placement. Because of burnout, I cannot work a traditional full-time job anymore.

What is burnout? What is autistic burnout?

Although my burnout seems to be broadly related to work, I was not strictly suffering from burnout as the World Health Organisation (2013) sees it: energy depletion, mental distance from, and negativism as relates to work. For burnout to count as burnout, it must be work-related and can only be work-related.

I now know that what I actually experienced (after talking to therapists, a diagnosing psychologist, and ‘autistic elders’) was actually a serious episode of autistic burnout.

I believe that autistic burnout means we desperately need to challenge the World Health Organisation’s conception of the condition. Burnout is not just about work (though it often happens there). Burnout is about constantly butting up against environments and systems that don’t allow you to flourish. This might be at work but – in the case of autistic people – it might also just be in your life in general.

Autistic burnout is a newly-recognised kind of burnout that autism researchers are starting to finally give more attention to. Dora Raymaker (2020) has conducted a very comprehensive and robust mixed-methods investigation into the nature of autistic burnout and her findings mirror my experience almost exactly.

Raymaker and colleagues (2020, p. 133) define autistic burnout thus:

“Autistic burnout is a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectation and abilities without adequate supports. It is characterized by pervasive, long-term (typically 3+months) exhaustion, loss of function, and reduced tolerance to stimulus.”

Raymaker and colleagues (ibid.) go on to say that participants associated their burnout with negative health impacts, a reduction in quality of life and suicidal behaviour. When I read this recently, the similarity to my own experience actually froze me to the spot.

I had suffered a textbook case of autistic burnout, and nobody realised – not even me. (I was undiagnosed at this point. Having a diagnosis might have prevented this burnout…who knows. The un/misdiagnosis of people assigned female at birth will be the subject of other posts!)

Masking and its relationship to autistic burnout

I have read many tweets and Twitter threads about what causes autistic burnout. Some of my online contacts say that their burnout is connected to a phenomenon called “masking”. Undiagnosed adult women are considered particularly likely to mask because of socialisation of girls/women to be personable and compliant (Bargiela et al., 2016).

Masking means changing or suppressing one’s autistic behaviours and presentation in order to meet the expectations of neurotypical society (see Hull, 2019 for a discussion).

For example, if I visit a corporate client:

  • I don’t talk about my special interests
  • I make eye contact with people and smile
  • I suppress fidgeting
  • I take extra care not to blurt out inappropriate comments
  • I pretend to be interested in topics that are tedious to me
  • I don’t correct people who are factually wrong about things in my field of expertise

These are masking behaviours designed to protect me from ridicule or discrimination. If I were to sit with a client, staring into the distance, singing snippets of a song over and over, and playing with a fidget cube, I might not be invited back to work with them again.

Twitter contacts have told me that they mask to keep themselves safe from potential harassment and violence. Masking, then, for me and for other autistic people, has a protective function. Masking comes at great cost, however.

Mandy (2019) explains that masking is sometimes called ‘social camouflage’ and ‘pretending to be normal’. In Mandy’s (2019) paper, we learn that masking is associated with mental health challenges. The literature Mandy (2019) reviews demonstrates a link consistently drawn by autistic participants: masking causes anxiety, depression and suicidal feelings, and it does so because masking is exhausting and stressful.

The link between masking, anxiety and depression is also raised in the work of Raymaker (2020)

Simply modifying behaviour, in and of itself, however, does not cause autistic burnout. Being able to alter and monitor what we do is very human and is often a good thing. In positive psychology, humans are said to possess a character strength of self-regulation which can be employed to generate, maintain, suppress, or avoid particular behaviours (see Peterson & Seligman, 2004, pp. 499-516).

In my positive psychology research, I explore the idea that the over-use of self-regulation in masking is part of the explanation for autistic burnout.

A picture of a laptop and a notebook which shows research into self-regulation

In my opinion, the (futile) over-use of self-regulation creates a state of anxiety and depression that causes disabling symptoms and loss of function.

We know that suppressing behaviours triggers a phenomenon called ego depletion (BPS, n.d.). If you say no to a biscuit all day, you’ll order a pizza as soon as you get home and eat the lot! I think autistic people stuff themselves down and hold in all their impulses, desires and autistic behaviours until they ‘pop’ and can’t mask any more. That’s when we burn out.

I tried extremely hard to be a perfect teacher until I broke myself in the process of doing it.

In the run-up to burnout, autistic people suppress their “atypical” behaviours and impulses until the ego depletion is so severe that they just cannot function. This seems to fit with Raymaker’s (2020) research, which says that autistic burnout is linked with an increased ‘load’ from which autistic people can find no relief and for which they get no support. Eventually, the expectations on the autistic person outweigh what they can actually do or be, and they burn out.

This seems to be what happened to me and I don’t know how to process what it feels like to be “a textbook case” or learn from the literature that what happened to me could be considered a trauma (see Kerns et al., 2015). I am still exploring this insight for myself but I am interested in the idea that I am experiencing post-traumatic growth (Collier, 2016) which is powering my research programme and fuelling a desire to help other late-diagnosed autistic people avoid burnout.

Moving forward – finding a silver-lining in my burnout

Without a shadow of a doubt or a hint of hyperbole, this episode of burnout was one of the most traumatic, upsetting, disabling and life-ruining things to ever happen to me. My career tanked, my finances suffered, I gained weight, I lost my partner, and I faced horrible bouts of anxiety. However, with time, research and very deliberate effort, I was able to recover. I promise to write about how I recovered from burnout and keep myself well in future posts. However, I wanted to set out here what burnout looks like for autistic people – from the perspective of research and also through the lens of my lived experience.

For me, it is important that I take my experiences of burnout and recovery and mix them with my ability to research and solve problems in order to help other people.

I don’t want anyone to go through what I went through. If I can do something to help other autistic adults, I want to do it.

I used to specialise in linguistics. Now I am going through a re-specialisation as a positive psychologist. Positive psychology is about discovering how humans can live a happy, content and “good” life. In other words, positive psychology is about helping all humans feel well and flourish. If that is to be the aim of the field, then the tools of positive psychology must be moulded or expanded to account for and support the autistic experience. I want to play a role in doing this.

My current research explores how to prevent burnout in autistic adults, and looks at what positive psychology coaching interventions and frameworks can to to support wellbeing, zest and burnout prevention in autistic adults.

Something good will come out of what happened to me.

Getting help & How to support this project

If anyone would like to discuss their own experiences of autistic burnout or be a coaching guinea pig to help me develop materials, tools and frameworks, get in touch with me. I’d love to talk to you and see if I can help – no charge and no catch.

If you are concerned that you may be facing autistic burnout, please make an appointment to see your doctor. You might find it helpful to print this post and this handout from the National Autistic Society to take with you – this is because some doctors don’t know much about autistic burnout.

Finally, if you appreciated this post and found it useful, please consider buying me a “coffee” to help me keep this blog going.

All best wishes and thank you for reading,

Becci

 

Becci is out walking by the canal in the sunshine, she is wearing headphones and flexing her bicep while smiling

References which made this post possible

Bargiela, S., Steward, R., & Mandy, W. (2016). The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype. Journal of Autism and Developmental Disorders, 46(10), 3281–3294. https://doi.org/10.1007/s10803-016-2872-8

Collier, L. (2016). Growth after trauma. American Psychological Association. https://www.apa.org/monitor/2016/11/growth-trauma#

Hull, L., Lai, M.-C., Baron-Cohen, S., Allison, C., Smith, P., Petrides, K. V., & Mandy, W. (2019). Gender differences in self-reported camouflaging in autistic and non-autistic adults. Autism, 24(2), 352–363. https://doi.org/10.1177/1362361319864804

Kerns, C. M., Newschaffer, C. J., & Berkowitz, S. J. (2015). Traumatic Childhood Events and Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 45(11), 3475–3486. https://doi.org/10.1007/s10803-015-2392-y

Parks, A. (2015). Putting Positive Psychology Into Practice via Self‐Help. ResearchGate. https://www.researchgate.net/publication/300280939_Putting_Positive_Psychology_Into_Practice_via_Self-Help

Peterson, C., & Seligman, M. (2004). Character Strengths and Virtues: A Handbook and Classification (1st ed.). American Psychological Association / Oxford University Press.

Proyer, R. T., Ruch, W., & Buschor, C. (2012). Testing Strengths-Based Interventions: A Preliminary Study on the Effectiveness of a Program Targeting Curiosity, Gratitude, Hope, Humor, and Zest for Enhancing Life Satisfaction. Journal of Happiness Studies, 14(1), 275–292. https://doi.org/10.1007/s10902-012-9331-9

Raymaker, D. M., Teo, A. R., Steckler, N. A., Lentz, B., Scharer, M., Delos Santos, A., Kapp, S. K., Hunter, M., Joyce, A., & Nicolaidis, C. (2020). “Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout. Autism in Adulthood, 2(2), 132–143. https://doi.org/10.1089/aut.2019.0079

“Strongest evidence yet” for ego depletion – the idea that self control is a limited resource | BPS. (n.d.). British Psychological Society. Retrieved 14 February 2021, from https://www.bps.org.uk/news-and-policy/%E2%80%9Cstrongest-evidence-yet%E2%80%9D-ego-depletion-%E2%80%93-idea-self-control-limited-resource

WHO. (2019, May 28). Burn-out an ‘occupational phenomenon’: International Classification of Diseases. Who.Int. https://www.who.int/news/item/28-05-2019-burn-out-an-occupational-phenomenon-international-classification-of-diseases