We. Get. Drained! Recovering From Situational Autistic Burnout — THINKING PERSON’S GUIDE TO AUTISM
A lot of times now when parents of newly identified autistic kids ask me what they should know, the first thing I say is:
“We get tired.”
This is so important. The way we autistics process is often on hyperdrive. The activities that are like strolling for many allistic people are like sprinting for us. We need rest, more frequently and in greater durations than non-autistic people.
When we don’t get enough rest, we experience Autistic Burnout, which is a serious, horrible, and life-threatening complication of autism.
We. Get. Tired.
I rarely travel because it presents so many difficulties for my autistic experience. It’s also extremely difficult for me to attend multiple full days of intensive programing in a row without significant breaks. And yet I recently spent four days at Harvard, at a Business School institute on building board capacity for leadership. The event was attended by public school board directors and superintendents from about a dozen metropolitan districts across the county. It was an amazing opportunity.
I knew it would be a huge stretch to attend, but I badly wanted to go. I collaborated with my district, the Harvard Business School Disability Services Office, some great faculty, and my own support network to try to facilitate maximum access.
The most important accommodation was a dedicated support person who traveled with me to provided intermittent support throughout the entire experience, especially with airports, Ubers, meals, transitions, navigation on campus, cueing, problem solving, and planning. I also got photos of all spaces ahead of time, used flexible seating, brought an Echo Dot for my dorm, and had natural support from my colleagues.
I knew that even with significant support, I would be pushing myself to and beyond my capacity. The concept of Dignity of Risk applied, meaning that, given my disabilities, I was taking some risks with my health and well-being to participate in this experience, and I deserve to make that call. It was worth it to me. I knew I was risking autistic burnout to attend the Harvard trip, but I chose to take the risk. Autistic people, all people, can and do make choices to push ourselves past our limits sometimes.
There are also strategies that can help us recover from burnout. I have developed my own framework for recovery from situational burnout, and thought I’d share it in case it’s useful.
Two important things to know about my Situational Burnout Recovery framework:
- It will not work for long term Autistic Burnout. I have experienced (and almost died from) long term burnout. That happens when the long term life circumstances of an autistic person are not sustainable. It requires long term lifestyle shifts and/or introducing long term support services to remedy.
- Unfortunately, living an autistic life without long term burnout is a pretty rare privilege. I got here after decades of trying to organize care for myself and experiencing lucky circumstances and some institutional privledges. Even with luck and privilege, I am still reliant on Medicaid, Section 8, and overall systems-involvement to live a somewhat sustainable existence.
I’m sharing this framework more for parents, caregivers, educators, and therapists who may be able to advocate for burnout recovery needs for their loved ones, students, and clients, and to normalize this kind of need as standard autism support. If autistic adults can benefit in any way or experience validation from reading this post, I’m thrilled, but I don’t want to gaslight autistic adults by communicating that if you “just do this you’ll be fine,” because most of us CAN’T “just do this”; we don’t have the support.
Situational Burnout Recovery
Phase One: Captivity Stimming
This is a boring, restless, joyless part of recovery. I can’t engage with interests, usually can’t even watch TV or read or listen to podcasts or knit or anything. I am in bed, rolling around, not sleeping well but cat napping, wishing I had the capacity to do something interesting. I am conserving energy for eating (food someone else prepares and brings to me), drinking, and toileting. Everything else is off the table. Communication ability will be low. Auditory, visual, and cognitive processing will be low. I will probably be in pain. I will lack motor planning function and may need hands on support to eat, drink, walk to bathroom, etc. No flow, no sustained attention. I experience vertigo and numbness in extremities. If anyone tries to interact with me in any substational way, I’m probably either barely responsive or extremely cranky.
After my four day trip to Harvard, I planned two full days for Phase One.
Phase Two: Special Interests/Flow
This is much nicer. I still can’t do much, but now I can do some of the comforting favorite things that engage my passions and interests. The goal is to spend as much time in a flow state as possible because it rapidly heals my brain. For me this means TV, audiobooks, small crafts, social media, reading. Still mostly in bed but getting some motor function back, so I might be able to prep some of my own food and take a bath or shower. Pain reduces, and if my recovery is going well I’ll have moments of contentment, relaxation, and overall well-being. During this period I need to be protected from demands, especially any that might interrupt flow.
After my four day trip to Harvard and my two days of Phase One, I planned two full days for Phase Two. At the end of the second day of Phase Two, I have plans to attend a fun event—a Fat Pool Party—with my wife. It will be my first time venturing out of the house in my recovery process and I hope it’ll be additive to the process and not a set back, but we’ll see.
Phase Three: Preparing to Reengage
This is the phase where I start to “pick up the pieces.” My room has been a recovery nest for four days, so this is where I start cleaning up, change the bedsheets, put away laundry, organize materials. I’ve been eating take out or convenience foods, so now I’ll start to menu plan and begin making a grocery list. I’ll look at my calendar for the first time to see what meetings, events, or tasks are on the horizon. I might have a therapy or bodywork appointment, start conceptualizing a to-do list, being reengaging with non-survival routines, chat with friends.
I’m still resting and special-interesting a lot between tasks, definitely not at my usual capacity. I’m also doing tasks more slowly, because my sensory and information processing abilities are still taking more time and effort to execute. If I am supported to go slow, there is an integration value to these tasks, to reestablishing motor plans and cognitive function routines. I can reconnect to executing in a way that feels physically healing, that is sort of a naturalized version of OT and PT combined.
After my four day trip to Harvard, two days of Phase one, and two days of phase two, I planned three full days for Phase Three.
After Phase Three, I expect I will be completely recovered and able to resume my normal day-to-day pace of activity without harm or long term negative impact.
There you have it. Seven days of recovery for a four day trip. This timeline is going to be variable from person to person, or might be totally different for some folks.
The trip was rigorous, but also positive and I had a lot of support. If it had been a more relaxing trip, or a less supported trip, or a trip full of unwanted demands, my timeline may be different.
If your autistic kid goes through a bored-and-grumpy, then hyper-focused-on-screens/interests, then exhausted-from-doing-just-one-tiny-chore cycle post-stress, they may be way smarter and more tuned in to their neurological needs than I am, because it took me ~40 years to figure this out.
This alpaca is also very, very tired. Image by Petra from Pixabay
