May 27, 2019

I identify as tired

Posted in Uncategorized tagged , , at 9:03 pm by chavisory

I started wondering something explicitly for the first time recently, and that is: How many autistic kids who fly under the radar for years, or forever, present primarily to non-autistic observers as exhausted?

I wonder this as I continue recovering from a recent production, and my main problem is just that I’m so exhausted. If I get up at 10:00 AM, I need a nap by 4:00 or 5:00, and not for having done all that much in my waking hours. Every time somebody has made me exercise the slightest amount of planning ability outside of work, I just want to cry. It’s taken my writing brain a couple of months to even think about coming back online. And transitions are still the worst.

But mostly I’m just so tired.

And I look back on being a kid and obviously there was so much that I just had no frame of reference to explain, but one of the things that was apparent, even to me, even when I was really little, was that other people didn’t think I should be so tired. In grade school I was too tired to talk to a friend on the bus ride home instead of just staring out the window at the sunlight flickering in the trees. In middle and high school (on the afternoons I got to come home), I needed a two-hour nap before I could regroup and start thinking about dinner and homework, and people just didn’t believe I was too thrashed from a day of school to do much of anything else before that happened.

While there were things that I couldn’t do at all and had no way to justify why, a fair amount of the time, it wasn’t that I just flatly couldn’t. It was that I could do what was demanded by school or social activities, or at least perform a superficial but apparently somewhat convincing pantomime thereof, for a sharply limited amount of time, and it took absolutely everything out of me to function that way until I couldn’t anymore, and then people didn’t understand why I couldn’t anymore.

And sometimes it was actually that something more specific was the real problem, like having trouble transitioning, or not having the verbal bandwidth or social knowledge, or having motor planning trouble. But I didn’t have words for any of that, and the closest approximation I had available was often “I’m too tired.”

“Why?”

“I don’t know.”

I mean, I didn’t.

I’m more embarrassed of it now than I was when I just didn’t know that I shouldn’t be that tired, and what the reason was. It’s one of the probably top three things I feel like I have to hide in terms of being autistic and doing what I do for a living.

That me sitting here having a conversation in a way that reads as baseline normal to you is so high-energy that I’m going to start to break down from it in about half the time as you and have to go home and collapse. That to you that’s just how humans work and to me it’s like performing an extremely high-level game of mental and physical coordination.

That there are a lot of things I’d like to accomplish but I flatly don’t have the energy.

That when people suggest I do things like ~go to grad school~ or ~run for office~ it is hard to admit “Okay, do you know how much of my available energy I am currently using just to hold my life together and meet my obligations to the extent that I am right now?”

All of it. It’s all of it. I’m not just skating here.

And that’s not even from masking or passing or pretending not to be autistic. That’s just getting the stuff done that I have to get done. The cost of masking is above my price point.

That what you are talking about is so far beyond my capacity to think in extremely abstract ways and be on the hook to communicate about for that much of the day and do high-level strategic planning/networking and also do the work of holding my life together. And also write papers?!

Why don’t I run for office? Why don’t I teach college? Because I can’t actually speak for more than about two cumulative hours per day, and it helps if even all of that time isn’t consecutive; why don’t you become an astronaut if that’s what you really want? Oh, what’s that? You don’t have the resources, either internal or external, to go back to school for a terminal degree in math or physics or astronomy followed by years and years of physical conditioning?

Okay. That’s close to the energy differential we’re talking about here.

“Twice exceptionality: When your test scores write checks your actual abilities can’t cash,” is how a friend put it once.

There’s a presentation of autistic reaction to unmanageable demands that gets called Pathological Demand Avoidance… and while I have a lot of problems with how that’s framed, I think it may be “real” insofar as being a recognizable pattern of coping strategy in the form of exhibiting disproportionate, preemptive or protective defiance to what seem like normal, commonplace demands to a non-disabled adult.

I think there might be another one in which autistic kids, whatever they’re feeling, try and try and try and try and try to meet adult demands to the point where they wear themselves out trying, or get fed up with the Kafkaesque paradox wherein no matter how well they manage, the outcome is even heavier demand on their limited abilities to manage.

Anyway, I wonder…in light of admittedly anecdotal personal experience, how many autistic kids—not that they don’t show other signs, but which might be misattributed or considered “quirks” or misbehavior—how many kids primarily have it noticed that they are so frequently so tired, and there’s not an obvious physical reason why?

To the next person who says to me “How are you really disabled?” or “I don’t see how you’re autistic,” I’m going to be hard-pressed not to reply “I am so goddamned tired.”

tiredHannah Gadsby, another autistic performing artist who is tired.

16 Comments »

  1. Sheila Reed said,

    Wait….Hannah is on the spectrum too?? Had no idea. Love her!

    Thank you for sharing your perspective. I often think when my son is scripting at home after being at school all day is he just releasing/relaxing after a long hard day??

    • chavisory said,

      Hannah is on the spectrum!

      And yes, I think a lot of autistic people hold in our scripting and stimming while we get through our school or work days and then let it all go once we’re home.

  2. Heidi said,

    Me too.

  3. Reblogged this on a coherent heart.

  4. dawnjoyleong said,

    Thank you, thank you, and thank you again. This has to be said much more often!

  5. B said,

    Thank you for this article. My 20 yr old son exactly the same – yep severe exhaustion just thinking about demands and starting the “doing” process. Research bodies have started looking at Impact of daytime sleep/exhaustion issues on adults with ASD and their ability to maintain employment. Adults can be funny, smart and have ASD that doesn’t “show” but makes everyday activities an enormous challenge.

  6. Dianne said,

    I have heard this before..from my daughter. It is so hard to find any balance. I try to offer her both the encouragement to succeed and the space to just “be”. My concern is she’s still wants someone to tell her something is causing it so it can be fixed, and so often feels overwhelmed with just waking up. She’s brave and strong and keeps on…but I want her to have more. She doesn’t have to “be” more..I would just like her to be able to relax and find some joy in life..positive advice welcome.

    • Restless Hands said,

      Much sympathy to her. It can be an ongoing struggle. For years, I’ve flip-flopped between accepting myself as “disabled,” worrying that I’m just lazy, and looking for a physical diagnosis for the fact that just living exhausts me. Making friends with other disabled people has helped me hugely.

    • Jacqueline de Vries said,

      You might consider exploring neurofeedback (the form I would recommend is called Infraslow Fluctuation) – when there are areas of your brain and autonomic nervous system out of sync, you feel very tired. As you get more tuned up, you have more energy. Having crashed from a significant illness that highlighted my ASD characteristics to an extreme, I have found my way back but I also had to try alot of things…

  7. Restless Hands said,

    Oh wow. This describes me so much more than I can say. Thank you.
    In my case, a fair bit of the fatigue comes from depression rather than autism but yes, yes, just surviving through a day can feel like running a marathon. Basic interactions wipe me out. I dread having to use the phone. I once put off an errand for three years because it required navigating something new to me. And people say, “You’re so smart. Why don’t you… (go to grad school, pursue a more serious career, etc.)?”

  8. Frances said,

    It is like you live inside my brain and body, and put words to the experience. Maybe your words will help those humans in proximity understand better. I would sleep/rest as much as I could. So depleted from school week, I was often sickish on weekends.
    Even now, much older, tasking takes me much longer than others to complete…and at least I am trying to choose what is worth the effort, and trying to be kinder to self. Regardless of expectations of others. Or expectation of self. Stay kind to you! Thank you for posting.

  9. Ellen said,

    Thank you thank you thank you!!!!

  10. Megan Zurawicz said,

    Wow. I think you just explained my life to me after 66 years.

  11. socknit said,

    I have Lyme disease which severely impacts my ability to replenish my ATP, the energy that is released from the mitochondria. In my corner of the impaired community, we have a metaphor about spoons. Every person has their own number of energy units available per day, which are referred to as spoons, and when you run out of spoons, you might have to borrow some from tomorrow’s spoon allocation. When you’ve used up too many spoons, you can’t do anything but rest until you get some more spoons in your inventory.

    There’s a story behind the spoons metaphor which is interesting to read. It’s really useful shorthand to be able to tell people I don’t have enough spoons for that. Or I need to rest tomorrow, I won’t have spoons for days.

    Thank you for your insight into some of the ways that each of us becomes tired.

  12. […] I identify as tired […]


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