Autistic Burnout, Meltdown, and Shutdown - What Are They And How Can I Help?
Autistic burnout refers to a state of physical, emotional, and/or cognitive exhaustion that can affect autistic people as a result of long-term stress from trying to navigate a world that is not always accommodating to their needs and preferences. Autistic burnout can manifest in various ways, such as reduced executive functioning, social withdrawal, decreased ability to communicate or express emotions, increased sensitivity to sensory stimuli, and physical fatigue. It is important to note that autistic burnout is not (yet) a clinical diagnosis but rather a concept used by some autistic people to describe their experiences of chronic stress and overwhelm. Dora Raymaker is one of the few researchers who has studied autistic burnout. She explains what she has found in this interview (30min) and more extensively in this presentation (90 min).
For me, autistic burnout began to come into play in adolescence. The hormonal changes of puberty and the increased responsibilities exacerbated the stresses of sensory overload, masking, and executive dysfunction. The longer I struggled to function according to neurotypical expectations, the more taxing it was. By my late-twenties, a pattern of being active until I crashed and then shutting down to recover was entrenched. Paul Micallef of Autism from the Inside inspired me to think of this like a battery in this video comparing burnout to depression. My battery was being run down until it shut off almost every day. After a weekend of rest, I’d be back up to 50%. Each day my battery would run down again and rest overnight. That wasn’t enough time to recharge, I’d start the day with 10% less than the day before. By Friday I had no charge at all at the end of the day, and I was shut down most of the weekend. On Monday the cycle would start again. Years of this has meant that I have less capacity and take longer to recover even now that I am living at a slower pace.
I’ve realized in the past couple of years that rest is not enough, and the kind of rest matters. If I am resting by doing things that tax the cognitive and sensory capacities that are already tired, I will not recharge as effectively. And, as Paul explains in the video linked above, I need to not only stop expending energy, I need to recharge. I have tended to do things like play puzzle games or watch TV, but I’m realizing those things put out energy from parts that need rest, get boring pretty quickly, and don’t bring a lot of energy in. It’s more helpful to do things that are soothing to my senses and direct my attention to my body like low-skill artmaking, sorting things by color, swimming, stretching, parallel play with friends, or spending time in nature. What recharges you? Participants in Dora Raymaker’s study found supports from these categories helped with recovery and prevention:
social acceptance and support
attending to autistic needs (like stimming, unmasking, and spending time with special interests)
formal supports (such as disability accommodations, mental health support, and help with practical tasks)
rest
self-advocacy and self knowledge (your sensory triggers and signs of burnout, knowing you’re autistic, understanding your autistic needs).
Burnout is a chronic problem, while meltdowns are shutdowns are acute. An autistic meltdown refers to a loss of control over one's emotions, behavior, and/or sensory input, typically in response to overwhelming stimuli or stressors. Autistic meltdowns can be triggered by a variety of factors, such as sensory overload, changes in routine, unexpected events, social anxiety, and communication difficulties. To me it feels like there’s an amount of stressful stimulation I can handle; once I’ve exceeded that amount, I melt down (or shut down, see below). During a meltdown, an autistic person may experience intense emotions, such as fear, anger, or frustration, and cry, scream, pace, or use stimming movements that are more intense than usual. Though this behavior might look like a tantrum from the outside, it is important to note that autistic meltdowns are not deliberate or manipulative. Meltdowns are a result of our difficulty in regulating our autonomic nervous systems in response to stressors. Though this kind of hyper-aroused state that can happen to any human, autistic people are more likely to have this reaction due to the differences in our neurology.
Supporting autistic individuals during and after a meltdown involves moving to a calm and safe environment and providing sensory accommodations. When we are calm, you can also ask what you can do to help in future situations. What I need while I am melting down is to be able to cry, make noises, and move my body to let the energy out. I need to let go of worries about how my meltdown might impact others and care for myself first. This often means going to my room or another safe place. Pressure on my body helps, as long as it doesn’t keep me from moving. Vagal toning can help, too, but some forms will need to wait until I have let out enough energy. My partner helps me by reminding me to go to my room and by holding me once I am calm enough to tolerate touch. Afterwards, if I am still having intrusive thoughts about what triggered the meltdown, writing about it or doing something distracting for my mind can help. If another person was part of the trigger, it can help to share with them what happened for me. I will still be sensitive and need reduced stimulation and rest for a day or two afterwards.
A shutdown often occurs for me before or after a meltdown. An autistic shutdown is a state in which an autistic person may become non-responsive, uncommunicative, and withdrawn as a response to overwhelming stress or stimulation. During an autistic shutdown, we may experience a sudden loss of cognitive or physical abilities, such as the ability to speak, move, or process information. The shutdown can vary in intensity and duration, but it is typically a coping mechanism that allows us to regulate our sensory input, emotions, and stress levels. Autistic shutdowns can occur in response to various triggers, such as social situations, sensory overload, or unexpected changes in routine. After a shutdown, we may need time to recover and feel safe before we can resume our normal activities.
When I am nearing sensory overload, shutdowns may occur as a way to prevent meltdown. After a meltdown, they help reduce my sensory load while I recover. Some of the things that help for meltdowns, like reducing sensory input or going to a safe place, will also help for shutdowns. If I can’t physically go somewhere quieter or darker, sunglasses or a blindfold and noise canceling headphones or earplugs can really help. I may need help from others to take care of needs such as making food, drinking water, moving to a calmer place. I’m experimenting with using alternative forms of communication like text, text to speech, or gestures. Not having to force myself to make mouth words reduces my stress, and it helps to have ways to communicate my needs. Though shutdown is often involuntary, I find that it can help to use these tools and strategies before I lose capacity and am forced to. If I take a sensory break on purpose, I may be able to avoid a shutdown or meltdown. I do my best to include low demand time in my weekly schedule to attend to my autistic needs. You can learn more about prevention from my post, Coping with the Coke Bottle Effect: Five Ways to (Sometimes) Prevent Autistic Meltdowns, Shutdowns, and Crashes.
If you’d like to learn more, connect with other autistic people, and get support for your recovery from burnout, become a member of the World Too Full To Talk Community.
