​Autistic burnout
By Lisa Macafee
 
What does autistic burnout feel like for me?  It’s different for every autistic person, so I won’t pretend mine is typical. 
 
Today is Wednesday.  I started a new job last week and now work two part-time jobs for a total of 40 hours split between them. 
 
I have been navigating new procedure (in person!), new people, have been trying to be approachable and bond with new co-workers, and perform my other job responsibilities well, be a good mom, a loving wife, a competent student, and keep the house in order.
 
This Monday, I had Locke in the car ready to take him to daycare as Ryan left with Rowan… and my car wouldn’t start.  The panic rose in my chest as I did everything I could to start the car.  Eventually, I was able to get it going, but it kept having the issue, so I called on my way to work on Tuesday to arrange to drop if off after work.
 
I dropped off the car after work Tuesday, pulled a car seat out and hauled it over to the rental agency, rented a car, put the car seat in, picked up Locke, and got home around 5pm.  Today, I took Locke to daycare, drove to work, worked (and had some delightful but intense conversations with co-workers), went home to pick up the recalled charger, took the car seat out, took the rental back, picked up my car after being fixed, but was told they forgot to order the replacement part for the recalled charger and could I stop by tomorrow to get it.  This was the third time I brought my car in for the same recall, and they are telling me to come back again. 
 
This is the moment.  Too many new things.  Too much management of feelings.  Too many physical tasks. 
 
I immediately wanted to cry, which I felt the need to furiously repress, because I have internalized that I can’t show weakness.  Without an ability to vent the frustration, I get hot with anger, which I also repress, because I’ve internalized that angry women are hysterical and not to be taken seriously.
 
My brain just skids out like the tires losing traction on the road.  My speech drops to monosyllabic responses, my affect goes flat, and my body gets shaky and uncoordinated.  It feels like there are a swarm of bees in my head that I can’t hear through or think around.  I often feel unsafe to drive in these situations.  I get a plummeting sadness. 
 
Then I go pick up Rowan and put on my “mom” face.  Put the car seat back in.  Be happy, kind, loving.  Then Locke is having his own autistic burnout because he has been in daycare longer than normal and his routines are out of whack and he is screaming, kicking, and crying at us.  I get it, kid, I get it.
 
It takes everything I have to be calm.  To not react with anger.  To hold him in his anger and let him express it so he can feel better. 
 
Put the kids to bed.  Be so mentally and physically exhausted that all I can do is this and then sleep.  When I get to this place, I do not feel able to speak about anything, but I feel a compelling need to write it out.  So here we are. 
 
As Nicholas Cage said, “OH, NO, NOT THE BEES! NOT THE BEES! AAAAAHHHHH!”

​Things have become a little weird this summer.  I’ve had a fibromyalgia flare since mid-June that has gotten better and worse, but has generally made itself part of my life.  I’m trying to be chill and accept what life throws at me with good temper, but (not gonna lie), it’s been hard to be gracious.
 
I am very lucky that I have amazing people in my life who make this not as bad as it could be.  My husband, Ryan, has been THE BEST.  He’s encouraged me to use a wheelchair when I’m too weak to use the walker or when using the walker would wipe me out, and happily pushes me around.  A bonus is that one kid almost always sits in my lap when I’m in the wheelchair, and that takes the sting out of it.
 
I don’t like it though. 
 
I don’t like that I’m physically used up for the day after taking a shower and making breakfast. 
 
The really annoying part is that I can do more, but if I do, I’m borrowing spoons from the future.  If you haven’t read The Spoon Theory by Christine Miserandino, she does a great job of describing what it’s like to have a limited amount of actionable items (spoons) to be able to do each day and how we need to make choices that others would never think about because they have more spoons than they typically need in a day.
 
We are all on Summer break (I’m the only one working part-time), and if I want to participate in activities with my kids, I need to take a walker or wheelchair.  If I don’t take a mobility aid, the amount of standing and walking required for even a small outing takes the energy out of me and I’ll need to spend the next day laying in bed.  Which I’ve done a lot of, because I keep thinking it will be fine and doing more than I should.
 
The silver lining is that I’ve been reading a lot of novels and I’m way ahead in my PsyD class, so that when I start my new job (!) at Santa Ana College in one more week, I have some grace time for my assignments in school.  Being able to work on my PsyD at my own pace (while sitting) makes me feel competent.  I have a hard time not being productive, depression tends to kick in, so my PsyD program and working remotely have been good for me.
 
Fibromyalgia flares are exacerbated by stress.  Basically, something happened that put our fight or flight response into overdrive and we can’t shut it off, and our bodies run themselves down.  Too much hypervigilance = bone weary fatigue, muscle pain, headaches, and other (not) funs.
 
I’ve been coordinating the development of LGBTQIA+ stuff at Fullerton College and just navigating that emotionally charged workplace (remotely) has left me wiped out for days. 
 
Physical, emotional, or intellectual stress takes me down.
 
Did I mention that I’m starting a new job?  On campus?  In a week, I’ll be working for Fullerton College remotely for half the week and Santa Ana College (SAC) on campus as their career center coordinator for half the week. 
 
I’ll be working a full-time schedule again and my job at SAC will be something I’ve never done before… like last semester, the semester before that, and the semester before that. 
 
I like learning new things, but I’m not sure I can handle the stress of driving to SAC (about 45 minutes each way), walking across campus, and facing a whole new group of people and job responsibilities.
 
I want to be a good parent to my babies.  I want to be a good partner to my spouse.  I want to enrich myself with the PsyD, and be competent, and do good things at the colleges I work for. 
 
I want to be independent and I worry at how my mobility aids will be perceived by people at work.  I know that it’s illegal to discriminate against people for having a disability, but that doesn’t mean people don’t do it.  I don’t know what this means for me, and I guess the bottom line is that I find this scary.
 
Let’s keep on keeping on.