There are currently very few articles about Autistic Burnout (I have listed a few at the end of this article) it is not yet a recognised medical condition. The term is gaining interest and recognition through the Autistic self-advocacy communities and Neurodivergent Movements. The more people that write and share their experiences the more accepted and understood this will be. I am hoping that by sharing my own personal experience of Autistic Burnout people will be able to relate to elements and that it will help to bring more awareness and understanding.
Roles and expectations of society have evolved valuing a neuro-majority mindset, when you are neurodivergent that creates a very tricky, rocky landscape with lots of deep black holes that are difficult to try and navigate across. Over the years I have periodically ended up inside these black holes, some deeper and harder to get out of than others. These crashes came in many different disguises and lasted varying lengths of time from days and weeks to some episodes lasting for months and spreading across years. They were often identified as 're-occurring depression'. The classic Depression symptoms were all there, but that diagnosis never felt completely accurate, it always felt incomplete.
It is not that Autistic Burnout is more severe than Depression or Depression is more serious than Autistic Burnout. I would argue that Depression and Autistic Burnout are different, however, they can both potentially result in serious mental ill health. It wasn’t until my Autistic diagnosis that I subsequently came to realise that the cycles of my mind, body, emotions and sensory system reaching overwhelm and eventually shut down was actually Autistic Burnout.
The Deficit Model of Autism Diagnosis
At the time of my Autistic diagnosis, I ticked all the boxes of an Autistic person who is struggling to cope, in effect I was meeting what was expected of an Autistic adult at that time. It took repeated episodes of depression and anxiety with a loss of executive functioning skills, a deterioration in communication skills and increasingly difficult issues with sensory processing for me to be diagnosed as Autistic. I met the criteria because it is a medically deficit diagnostic criteria. I could no longer keep masking and functioning effectively in an environment where I was constantly striving to meet the norms and expectations set out by the values of the predominant neurotype which conflicted with my own neurodivergence. I had reached Autistic Burnout, again.
Autistic Burnout is NOT depression
Autistic Burnout is different to Depression, it is the cumulative result of going for weeks, months or years masking and being driven purely by adrenalin so only the spikiest parts of your sensory profile needs get met, not the great mass hidden deep down below the surface. Autistic Burnout is the result of trying to continue with life whilst being on empty.
Cycles of Autistic Burnout
Autistic Burnout was the culmination of successfully having a career and family whilst constantly struggling to not sink under the increasing weight of an overwhelmed and dysregulated sensory system. It was the combination of doing this whilst also struggling with communication, socializing and general executive functioning. Cycles of Autistic Burnout will inevitably keep happening unless you learn to un-mask and meet your needs. You need to learn to read the signs of what your body, mind and sensory system needs. You need to give yourself time and space for recovery when you need it, otherwise Autistic Burnout will force you into a recovery on its own schedule. This could take much longer to recover from and could potentially be detrimental to your mental health. The difficulty in meeting your own needs is that being Autistic and having difficulties interpreting your interoceptive signals combined with alexithymia and not always feeling like you truly know how you are feeling makes meeting your needs complicated and very difficult, it leads to re-occurring cycles of Autistic Burnout as you constantly struggle to understand your own mind and body.
Tunnel-Vision – a hyperfocus for survival
The process of finding yourself heading towards Autistic Burnout is like having complete tunnel vision, you don't notice what is going on immediately around you. It feels like an all-consuming hyperfocus for survival, it is living at such a heightened baseline that you aren't even aware of your own needs, you just try and get through each day. At some level I was aware I did not feel 'right' as other symptoms started creeping in like migraines, anxiety, and sleep difficulties. The combination of living in a hyperfocus-tunnel-vision and having a dysregulated sensory system make it hard for the person heading towards Autistic Burnout to recognise and identify their own symptoms and emotions (heightened alexithymia) as they are too deep inside the tunnel.
Loss of Skills and Internal Meltdowns
I was having daily internal meltdowns, as soon as I got any moment to myself, just those few minutes of breathing space would feel too much, my system would go into overdrive and I would start shutting down, physically, mentally and emotionally. I started getting increasingly anxious and living in a state of brain fog, confusion and gradually experiencing a loss of communication skills. I began spiralling down into a vortex of sensory overwhelm and sleep deprivation, feeling unable to cope with normal everyday noise, lights, the general busyness of life and any kind of socialisation. In hindsight, it is incredible I was able to carry on for as long as I did, I was still achieving everything to a very high standard, I could not let anything drop. My work became an obsession of editing and re-editing and ensuring that everything I did was to the best of my ability. As a teacher with an already high workload, this was all consuming.
It felt like the inside of my head was Euston train station in rush hour; like I had 100's of tunnels and platforms inside my mind with ideas and thoughts running in and out 24/7. It felt like I had hundreds of plans and schedules all running simultaneously inside my head, each running on its own tracks and trying to avoid crashing into each other. It would have appeared to colleagues I was doing well; but I was slowly breaking down inside, the actual core part of my mind, sensory system and body started slowly breaking and taking more and more strength to keep everything running together.
Autistic Burnout - A Vortex
Autistic Burnout is like being inside all-consuming vortex, where the air absorbs whatever energy and capacity for life you have left. You can survive inside this space for a while, you may even be able to have a career and juggle home, family, and friends but the sacrifices and consequences of ignoring your own needs is detrimental to mental health. Eventually if you keep ignoring the warning signs you will end up too deep inside the vortex to get out without support, you may become mentally ill. Autism is not an illness, but I would argue Autistic Burnout can cause severe mental ill health. The roller coaster cycle of burnouts, meltdowns, shutdowns, migraines, anxiety attacks and periods of utter exhaustion are more common than I realised after reading experiences others have shared on various groups and in talking to other neurodivergent friends. Autistic Burnout is an exhaustion beyond what sleep can help with.
Autistic Burnout feels like a total exhaustion of my mind, body, and emotional and sensory systems.
Recovery from Autistic Burnout
There are ways to help with Burnout and you can get out of it.
You need time and rest, rest from Everything!
You need time to recover from an exhausted mind and body, but you also need time to allow your sensory system to recover. Sleep alone is not enough to recover from Autistic Burnout, you need rest from everything and get nourishment from the things that make your body feel better, so your senses can recover and become re-regulated.
Low-Arousal Parenting
To recover from Autistic Burnout, alongside needing lots of time and rest you need to take away as many external pressures as possible, reduce work and social commitments and re-prioritise your family and daily needs. If it is not life threatening it can probably wait. It is taking low-arousal parenting to the next level, as long as your children are loved, safe, fed and happy they are ok. Do what you to do to get through that moment, if that involves another Happy Meal then that is fine. If the TV is on for 12 hours a day, that is fine. Try and arrange playdates and ask family and friends to help out so your children are looked after and also have a range of activities and interests to keep them busy and engaged.
Sensory-Diet To recover from Autistic Burnout, in addition to lots of time and rest and adopting a very low-arousal parenting approach I believe you also need a sensory diet for yourself. A sensory diet helps to feed and re-nourish your sensory system. You may feel you actually crave some sensory experiences more than others; you may find yourself ‘needing’ a weighted blanket, 'needing' a dark quiet room and using your favourite scented aromatherapy candle. This is not you indulging in depression or being lazy, this is recovery. Listen to what your body wants and needs.
A New Direction
Everyone’s sensory profile is unique so each sensory diet would look different for each person going through Autistic Burnout, there is not one single route for recovery. However, slowly the benefits of rest and adding in your own sensory diet will feed into your recovery. You will be able to slowly start adding in other low key social activities and getting out more, eventually you will be able to return back to a more functional productive life again. You may be on a different path to where you started when Autistic Burnout hit you but you will survive and be able to head in a new direction.
Mental Well-Being
Mental well-being is not about doing yoga, downloading a meditation app, and drinking organic herbal tea (although I am sure these things would help if you were into that). Mental well-being for neurodivergent people is about REALLY listening to your body, checking in with your interoceptive senses. Body-scans can help but if you have co-occurring difficulties such as alexithymia then even finding out what your body and mind need can be challenging but you can try things out and see how it feels.
Stay Positive
Reading about the experiences that have others have shared regarding Autistic Burnout helped me, following neurodivergent advocates on social media help me feel part of a community. I hope the articles and information I share here @AutisticRealms will help others too.
Autistic Burnout is a journey but there is a way out of the hole and there is light the other side. Give yourself as much time as you need to heal whether that is days, weeks, months or longer, you will get there.
Stay Positive!