Autistic Burnout Pt. 4: How do I know I’m in Autistic burnout?

Welcome to the fourth part of my series on Autistic Burnout. If you’re just joining us, I highly recommend starting from the beginning to fully understand what Autistic burnout is and how to address it. For those who have been following along, thank you for continuing this journey with me. Previously, I gave a general overview of Autistic burnout, detailing what it is and how it differs from depression and occupational burnout. In this article, I’m going to delve deeper into what it feels like to be in Autistic burnout. I’ll share descriptors from #ActuallyAutistic people, alongside some of my own experiences.

Autistic burnout is a state of chronic exhaustion, loss of skills, and reduced tolerance to sensory input, often resulting from neglecting self-care and personal needs. Prioritizing self-care practices can significantly improve our ability to manage stress and maintain overall well-being.

One of my biggest questions when learning about all of this was “Okay, I get what Autistic burnout is, but how do I know if I’m in it? What does Autistic burnout FEEL like?” I’ll structure the experience of Autistic burnout around the three characteristics identified in the AASPIRE study: chronic exhaustion, loss of skills, and reduced tolerance to stimulus.

Chronic Exhaustion

My experience of Autistic burnout was one of complete and total exhaustion. The mere act of existing was too exhausting and too difficult. I was doing the bare minimum each day to survive – going to work and making sure me and my dogs were fed – that was it and it felt like I was dragging myself through tar. It’s almost like I could feel every cell in my body with each little cell operating on 25% of the energy it needs to do its one little job.

The experiences noted in the AASPIRE study were very similar, described as “a depletion of energy from overextending themselves in daily life.” Words like tired and exhausted were recurring themes. A few of the research participant descriptions of their experience:

• Simply existing is knackering, never mind trying to hold down a job or have any sort of social life

• The advice to socialize, spend less time on the internet, meditate simply make matters worse

• Having all your internal resources exhausted beyond measure with no clean-up crew

Loss of Skills

I had to spend some time with this one. For a long time, I wasn’t sure I’d ever experienced Autistic burnout because I couldn’t identify any loss of skills. Once I let go of the DSM framework of “skill regression,” I was able to see all the things I’m no longer able to do as a result of Autistic burnout:

• Watch or read anything with a plot
• Meal prep, grocery shop, prep food, cook food, cleanup. 
• Tell a story. I can’t verbally communicate more than a couple thoughts at a time because I can’t hold the details in my brain
• Pay bills on time. Or at all. 
• Shower daily
• Get to appointments at the correct time or day
• Make a phone call to schedule appointments
• Maintain my hair. I’ve shaved my hair for several years due to sensory issues (see next section) but also because I can’t call to make the haircut appointments.
• Remembering the word I need (aphasia) and enunciation

Some of the lost skills described in the AASPIRE study include thinking, remembering, creating, vocational skills, regulating emotions, skills needed to live independently, problems with speech, and executing plans.

Reduced Tolerance to Stimulus

Another doubt I had about being Autistic is that I don’t recall having sensory issues as a kid. I’ve come to understand that I did have sensory issues, but I was able to adapt to them better prior to experiencing burnout. I noticed more problems with sensory issues shortly after I completed graduate school. That’s also when my chronic migraine started, so I assumed that was the cause of my new intolerance for sounds, strong smells, and clothing tags. The other thing that happened around the same time was my first Autistic burnout. It’s only recently that I’ve been able to put all of this together.

Sensory sensitivity is common in Autistic people and isn’t itself caused by Autistic burnout. You can have sensory sensitivities without ever having experienced Autistic burnout. However, burnout can make these sensitivities worse, introduce new ones, or reduce your ability to cope with them.

Participants in the AASPIRE study stated they were more sensitive to sensory stimuli during Autistic burnout and were more likely to be overstimulated with increased meltdowns and shutdowns. Some of them experienced a change in their reactions to stimuli, such as sounds becoming more painful, or becoming angry in response to certain stimuli. One participant also described the loss of a previously enjoyable activity because of the increased sensory sensitivity.

This is all a bit overwhelming. Now what?

The great thing about researchers starting to listen to Actually Autistic voices about our challenges is that they’re also listening to us about what helps. What seems to help are varying approaches to one thing: rest.

Your body is telling you that it needs to rest. You have pushed through and pushed through and your body is telling you that it has nothing left to give. You rest, and you replenish. In the next article in this series, I’ll share strategies that other Autistic people have shared and what has been helpful for me as well.

Conclusion

Understanding the nuanced experience of Autistic burnout is crucial. Chronic exhaustion, loss of skills, and reduced tolerance to stimulus paint a vivid picture of the challenges faced during burnout. Recognizing these signs can help in seeking appropriate support and implementing effective coping strategies. In the next series, I’ll go over how to start healing from Autistic burnout.

Takeaways:

• Chronic Exhaustion: Autistic burnout leads to a profound level of exhaustion, making even basic daily tasks feel insurmountable.
• Loss of Skills: Burnout can result in a noticeable decline in various skills, affecting everything from daily living activities to cognitive functions.
• Reduced Tolerance to Stimulus: Sensory sensitivities can become heightened during burnout, leading to increased meltdowns, shutdowns, and avoidance of previously enjoyable activities.

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Have you ever experienced Autistic burnout? What were some of the key signs that helped you identify it? How did you navigate the challenges? Share your experiences in the comments below—your insights could be incredibly valuable to others going through similar situations.