I asked the Dreamer community: What does burnout look like? How does burnout affect you? This blog is based off your amazing answers.

Autistic burnout is typically a heightened state of stress, which effects a person’s energy levels,  and diminishes their capacity to manage self-care, sensory management and social interactions. Burnout, for me, feels like it will never end; I have no energy, too much to do and not enough time. It effects my energy, emotions (both intensity and swings), sleep, bathroom habits, ability to look after myself, my memory, my executive function, my ability to care about anything.

Why do Autistic people experience burnout?

Burnout is often a product of living in a world which is not accommodating, as well as the usual stressors of life including traumatic events and big transitions. One community member shared “I am currently in burnout, due to changes at work but I am now on a break. I have no energy to do anything, even playing Xbox which I would normally do in my free time. Tired and lacking motivation, hoping the break from work helps.”

Work, and unexpected changes which can happen in the workplace, can contribute to burnout. Feeling out of control around changes and transitions can be really difficult to process and accept. Similar can be experiences in social events and with social obligations, as one community member shared:

“My burnout is typically caused by social obligations and pressures to engage and respond, which takes a terrific amount of cognitive exertion because social engagements and conversations are difficult for me. Unlike others who are lit-up, energized, fulfilled by social interactions, they represent a source of anxiety and stress for me. When it all gets too much, I withdraw.”

Social obligations can be fraught with difficulty such as unanswered questions and unclear expectations; where are we going? What do I wear? What is the sensory environment like? Will I say something silly? For many people these occasions bring great joy, for some, the mere thought of leaving the house to be with other people causes huge anxiety. I personally love to be around others, but I also need time alone to process and re-calibrate. I often cannot do more than one or two social things a week. When I worked full-time social events where even fewer as I did not have the emotional or physical energy for it.

Social interactions become harder

Not only can social obligations cause Autistic burnout, but they can also be affected by it, as one community member shared  “I’m unable to mask properly, fewer fake smiles and platitudes, incurring judgement from others, unhelpful suggestions and criticism.” These experiences isolate us and can make our burnout much worse.

Social interactions, which are already difficult, become nearly impossible, meaning that we can shut off from the outside world. Relationships take energy and during burnout energy does not exist. As one community member explained “I don’t want to be alone, but I can’t bear to be among people.”

Emotional dysregulation  

Burnout have been likened to depression in the way it presents; it can look like endless scrolling on your phone, disengaging with self-care or being unable to leave your bed. It can be completely debilitating. One community member shared:

“I genuinely thought I had a depression. I was always tired and couldn’t get myself to do more than the bare minimum, even preparing a very easy dinner felt like too much. Even things I usually enjoy / special interest felt too much. The only thing that wasn’t matching and let me question depression was that I didn’t have any depressive thoughts and my mood was okay – besides of beating myself up about not getting anything done.”

Another shared that burnout feels like “Anger, desperation and despair. Seeking physical pain because it’s solid and reassuring in its simplicity”.

Autistic burnout can look like an intensity of your usual emotional states, emotions mismatching your surroundings (as felt by you), or a dampening of emotions in a depressive like state.

Sensory dysregulation

Emotions and our senses are keenly intertwined, meaning that when we are in a bad place emotionally our senses can heighten or go dull. These feelings and sensations can make everything “louder and more overwhelming”, as one community member reflected:

“It affects every area of my life. I could sometimes block out mild to moderate sensory stimuli when I was fully regulated but when I’m in burnout I exist in the quiet, dark unable to listen to the music that always brings me joy because it dysregulates me.”

Things which we normally use for comfort, such as music, can become uncomfortable and even painful for us during burnout. This is made more difficult if we live or work in already overwhelming places. Perhaps this is why so many of us strive for self-employment, as we have more control over potentially overwhelming circumstances and environments. One community member shared:

“Thankfully, I’m a self-employed massage therapist and have control over light and sound levels. Working in the near dark all day with relaxing music and dealing with only one person at a time is the only reason I was able to work through the worst of my latest burnout.”

So many of the recommendations for overcoming Autistic burnout assume that we have control over all areas of our lives, which so few of us do. When it comes to processing emotions, going to work and socialising brainfog can make this all the more difficult.

Brainfog and inertia

One of the most annoying parts of burnout for me is my inability to sort through my thoughts and feelings and how this stops me – or significantly slows down my ability – to look after myself and my home. This quote from a community member really resonated with me “It takes a herculean effort to do personal care and go to work”. Everything just feels heavy and dull, fast and slow all at the same time. One community member described their brain during burnout:

“[My] Brain feels like the home of a chronic hoarder – stuff everywhere, disorganised and unbearably messy. Can’t remember anything or think straight. So. Damned. Frustrating!!”

Not only do we not achieve what we usually can through burnout, some of us are also plagued with feelings of failure, frustration and sadness. Why can’t my body do what I need it to do!? Why can’t I remember? What will people think of me muddling my words? I can’t keep up with the washing or things at work. I keep calling all my kids by the wrong names…This can feel like “wading through treacle to do anything” and can feel like:

“Failing at life. It feels like perpetual inertia. It feels like I have cotton in my brain and lead in my body. Like moving at all will take every bit of energy I have. Eating takes too much energy. It feels like every word I want is forever detoured from reaching the part of my brain it needs to. It feels like merely existing takes more energy than I have.”

This is perhaps more frustrating when you aren’t aware that you are in burnout, or as you are just slipping into it, as it can be a “long and slow descent and a slow and ongoing recovery as I balance living in an overwhelming world”.

Unfortunately, with functioning burnout, we don’t have the choice to stop, whether we recognise we are in burnout or not. Most of us have care responsibilities, work, volunteering and the job of looking after ourselves too. With this we are stealing energy from tomorrow to deal with today’s work of living. We have:

“No spoons. Owing more spoons than one could ever hope to repay. Making. More. Spoons. With your bare hands, sweat and tears, because, dammit, it’s level-up or nothing. No other options.”

So many of us need help but don’t know how or when to ask for it. We may not have been shown in our formative years that it is safe and useful to ask for help. As one person shared “nobody asks for help, but everyone is crying out for it”.

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I wanted to finish this article with a beautiful and harrowing poem shared by one community member. I don’t know if they intended it as poetry, but it is definitely worth sharing in its entirety, I shall leave it to the reader to interpret:

Like being trapped.

Like having so little energy but having to squeeze every last drop out of a dry sponge.

Like picking yourself up to carry on even when anyone else would have just laid down.

Like having nothing to give but having no choice but to find something to keep giving.

Like everything is loud and harsh and irritating.

And you can’t relax or feel at ease.

Desperation to claw back some kind of peace but finding only chaos.

No clarity, every thought, every new task is just too overwhelming.

Like tension and pressure building and flowing over into explosive meltdowns, soul rendering shutdowns and deep pits of darkness and pain.

Bleak, unending nothingness, with only a sense of immense responsibility as a lifeline.

Can’t leave them without a parent, can’t call in sick and lose our income, the roof over our heads… must push through the pain, must keep going. Can’t sit down, can’t stop.

Can’t feel hope, or joy.