Being autistic means a lifetime of fluid adaptation. We get a handle on something, develop coping strategies, adapt and we’re good. If life changes, we many need some time to readapt. Find the new pattern. Figure out the rules. Test out strategies to see what works. In the mean time, other things may fall apart. We lose skills. We struggle to cope with things that had previously been doable under more predictable conditions. This is not regression to an earlier developmental stage, it’s a process of adapting to new challenges and it’s one that we do across a lifetime of being autistic. (italics mine).
Action Step: Practice Self-Compassion
I don’t know about you, but I’ve had a tendency to “beat myself up” when I struggle with setbacks in my life.
In this article, she tells of how she has had to manage burnout by withdrawing from most of daily life to focus on the essentials of employment and raising her children.
In autistic burnout we come to the end of our resources that enable us to act as if we are not autistic in order to meet the demands of the world around us. For me these demands have included things like being able to raise my children and maintain employment. I have gone through a few distinct periods of burnout and have successfully managed them by withdrawing from the world as best I could while carrying on daily commitments to children and to employment. Twice during my adult life I had to severely limit my gainful employment because the burnout was too great to enable me to continue. I always have been good at planning and saving so each of these times I had savings to draw from for several months. Judy Endow, Autistic Burnout and Aging.
But she also realized that she’s had to lower her expectations of what she can do as she ages. She planned an exciting cruise to Alaska only to realize that she didn’t feel as relaxed after it as she had on vacations past.
When she got back home, she had to “take it easy” to allow her body and system to re-regulate after being gone from home.
Now that I am home I am continuing to practice being kind to myself by adjusting my own expectations of how much I do in one day. As an autistic I have for several years been doing the same quantity of employment, housework, art production, regulation, reading, writing, etc. both daily and weekly. Following a schedule is important to me as is getting things accomplished. I didn’t realize my self imposed expectations needed to be adjusted. Judy Endow, Autistic Burnout and Aging.
(Editorial Note: This is a really long quote that I’m including because there is so much here that needs to be heard and understood.)
Burnout, long-term shutdown, or whatever you want to call it, happens generally when you have been doing much more than you should be doing. Most people have a level to which they are capable of functioning without burnout, a level to which they are capable of functioning for emergency purposes only, and a level to which they simply cannot function. In autistic people in current societies, that first level is much narrower. Simply functioning at a minimally acceptable level to non-autistic people or for survival, can push us into the zone that in a non-autistic person would be reserved for emergencies. Prolonged functioning in emergency mode can result in loss of skills and burnout.
The danger here may be obvious: It may be the people most capable of passing for normal, the most obvious “success stories" in the eyes of non-autistic people (some of whom became so adept at passing that they were never considered autistic in the first place), who are the most likely to burn out the hardest and suddenly need to either act in very conspicuously autistic ways or die.
To the outside world, this can look as if a forty-year-old perfectly normal person suddenly starts acting like a very stereotypically autistic person, and they can believe that this is a sudden change rather than a cumulative burnout eventually resulting in a complete inability to function in any way that looks remotely normal. The outside world is not used to things like this, and the autistic person might not be either. They might look for the sudden onset of a neurological disorder, or for psychological causes, and receive inappropriate “treatments" for both of these, when really all that has happened is massive and total burnout.
This can also look much less spectacular, or be much more gradual, and it can happen in any autistic person. Sometimes, with more supports or a change in pace or environment, the skills lost come back partially or totally. Sometimes the loss in skills appears to be permanent — but even that can be somewhat deceptive, because sometimes it is simply that the person can no longer push themselves far beyond what their original capacity was in the first place.
Sometimes this kind of burnout is what leads adults to seek diagnosis and services. Unfortunately, many service systems that would otherwise support people in their own homes, cater only to people who were diagnosed in childhood, and will look at someone with a very good neurotypical-looking track record of jobs, marriages, and children with suspicion. They need to be made more aware of this possibility, because there’s a high chance that an adult in this situation could end up jobless, homeless, institutionalized, misdiagnosed, given inappropriate medical treatment, or dead.
People training autistic children to look more normal or refusing to tell their children they are autistic also need to be aware of this possibility, because this is the potential end result ten, twenty, thirty, or forty years down the road. This is one of the biggest reasons for teaching us to learn and grow as ourselves, accounting for our strengths and weaknesses rather than as counterfeit neurotypicals.
Take some time away and have some alone time if the situation permits it (if not have some when you can e.g. when you get home)
It’s ok to cut out extra social contact for a while so long as it doesn’t interfere with work, education, appointments or other important commitments
Explain the situation to those close to you so they understand it’s not a reaction to something they may have done
Do something to distract yourself post-meltdown (e.g. browse the internet/listen to music/read), for me immersive tasks help the most
Plan your upcoming schedule, dedicate some alone time each day (even if it’s just ten minutes), whether it’s to do something (e.g. watching tv) or to just sit and reflect
Don’t push yourself too much afterwards (I decided to go to the shops two days later as a distraction and ended up making things worse because of the social contact that was required)
Keep things simple afterwards, make realistic plans and don’t take too much on if possible. If the meltdown causing factor is upcoming (e.g. an exam) break it down in to manageable chunks (getting someone close to help you break things down can be very helpful)
Allow yourself to recover naturally, if you choose to try and ease back in to a social environment (e.g. going shopping) taking small steps will likely be better than taking on a sudden and bigger social event
If you have to attend work/education/appointments take things to help you cope (e.g. music devices/a book/something sensory) and then take time to relax afterwards
Plan for future meltdowns/burnout periods by keeping on top of tasks so that you don’t have to worry about them if you suddenly need a break in the future due to a meltdown
Tips for Parents, Spouses, Girlfriends, Boyfriends, Professionals, etc.
Don’t push the person to engage in unnecessary communication, wait until they are ready
Try and remain understanding if the person becomes distant, don’t be offended by sudden changes in behaviour, or continual behaviour change following meltdowns
Let the person know you are there if need be but that you won’t push them to talk to you if they don’t wish to do so
Give them space if required
Make sure they are remembering to maintain normal, basic activities like eating food/drinking fluids (during meltdown appetite may diminish and basic day to day activities may seem less important)
If the person wants to pursue contact offer to discuss the issue(s) that led to a meltdown and offer assistance in counteracting the issue(s)
Show support towards their recovery decisions (e.g. choosing to avoid unnecessary social events for the foreseeable future – even if the person usually deals well with social situations)
Help (if possible) in keeping things as simple as possible afterwards
Understand that regression is possible and (even after long periods of dealing well with certain traits) the person may need to relearn some things (e.g. social etiquette) or take a while to be completely back to their usual selves
Understand that burnout will last for different time periods in different people and may therefore last a long while for some people
A Big Thank You
To all those autistic writers who’ve contributed their writing and tips, Thank You!
Thank you for sharing your experience and hope with the world at large.
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