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I realised something just recently – I’m burnt out. Talking with my one sister about it I said, “I dipped my toe into burnout” and she laughed and questioned, “Just the toe?”
“Okay, so I went in up to my knees…” (she laughs at me, again)
“FINE I WADED INTO MY WAIST!!”
Being Autistic and finding yourself in burnout is a big problem. I’m not talking about when life gets a bit overwhelming and you take a break and can regroup and carry on. This type of burnout is a big problem with very little literature available to help guide us through it, or even help prevent it. The only ones to talk about it are actually Autistic adults like myself. It wasn’t till we started communicating with each other that we realized what it was that was happening to us. I know it was both a relief and terrifying for me to finally have a name for it. Autistic Burnout.
While many people go on vacation to recharge from their own version of being burnt out, it was being on vacation recently that helped me realise just how far back down that rabbit hole I’ve gotten myself.
A few weeks ago my friend and I got to the spot we call Paradise to set up camp which you can’t just drive to — you have to hike into — quite early, and were all set up and ready to go by noon. Once set up I found myself just sitting a lot. Sitting and looking at this…
I’d sit in silence and marvel at the calm that made the Lake into a reflective wonder.
I’d sit and dig my feet and hands deep into the sand. I’d pull out handfuls and let it fall, waiting for a piece to catch the sun and glisten. I’d trace the sand with my hands, fingers wide open and I’d go round and round until I could feel the palms of my hands vibrate all over. The soles of my hands and my feet are almost polished from all the sensory seeking I did with them in the warm, white sand.
I’d sit and watch a single wave come to the shore when the wind was up. I’d find one out as far as I could see and then watch it make the journey to where it ended and contemplate that for a while. Then a new one would catch my eye and away we’d go.
I’d sit and watch the dragonflies, as many as a dozen, dance around me everywhere at dusk.
And I stood in the water a lot, just stood. When the waves were plenty I’d find myself being pushed and pulled by them as they broke against my body. So I’d close my eyes and be rocked by the water. It’s a blissful surrender for me. In that space I can really breathe, the oxygen fills my soul. When the water was calm I’d stand and watch to see if the resident mated pair of Loons would break the surface before gliding by.
And in that space I faced my weariness. With all the distractions gone, I saw how far away from myself I’d wandered yet again. I’m tired. Not just physically, because I am really tired these days, but also just deep-down-to-my-bones, tired. My vital life force feels weak. My memory is a mess, I’m having a lot of trouble communicating and I’m finding myself shutting down a lot.
This is what happens when I’m not being my true Autistic self. So what does that mean? Why do I find it necessary to identify it as Autistic burnout and not just simply, burnout?
Because for 25 years I was labelled as having manic (lovely word, that) depression/bipolar. What incomplete science seen as a manic cycle was really an Autistic person being pulled so far from herself and her internal resources that she would just explode into upsetting situations, extreme emotions, and eventually end with a lack of ability to cope at all. Till that fateful day in January 2012 when I came out of a 3 day coma born of, well, no one should have to go through what I did to get to that place. It was unfair and cruel. Life is unfair and cruel I am told. My brain wiring makes me naïve. I don’t know how to understand how people can be so mean. So it’s easy to catch me unknowing and exploit that. That’s why it is so important that it be seen as a separate experience than a NeuroTypical would go through.
From the moment I accepted I am Autistic, because that took many, many months after the Doctor first talked to me about it, everything changed and I can’t go back anymore. Going back comes with known, serious consequences. I’m not NeuroTypical and while I can do a decent job of passing depending on people, places and things – I WILL suffer if I try to be something I am not for any extended period of time. The longer I try to fit where I don’t belong and acquiesce acceptance, the less I am using necessary tools I need to make my way through this really overwhelming for me world.
The internet is an overwhelming place when you have such a strong sense of social justice and wanting to be truly heard and elevate the stories of others. And when you struggle with the social aspects it can become a very dark place at times. When I finally got to where I could have internet access again after several days without it, I found myself hesitant. And when I did start catching up I felt myself slowly deflating all the good I built up on my trip. So much distress, so many people needing help and being treated unfairly — forget what you heard about being Autistic and empathy — we shut down sometimes because of how deeply we feel, not because we don’t. Don’t carry that lie any further, please.
The internet is also the place where the #ActuallyAutistic community has made our voice heard in a viable way. I’ve had 2 fairly important, I think, articles published in the last few months. One was a reaction to a local news story (Group homes won’t ruin your neighbourhood, Dartmouth) and a decent amount of work on my part but nothing like the 2nd project. That required reading a 500 page book and turning it into under 2000 word review on what I, as an Autistic person, thought of the book. (Thinking Person’s Guide to Autism : How We Autistics Got to Here: Reviewing Steve Silberman’s NeuroTribes)
The Group Home article which was my 1st ever opt/ed piece ended up being my ‘coming out’ as an Autistic person to all and anyone. I didn’t really connect to that happening till after it was published. This was a local article for a local newspaper that would be read by many locals. It hit viscerally, just like the moment it hit me that yeah, this is the name for my brain wiring, for how I navigate the world and why I’ve always felt so separate. I actually had a Tribe here on earth and we had a name and I was accepted within that Tribe. I burst out laughing with unmitigated joy.
What I experience as a joyful thing is still very much not understood or accepted by the majority of people. But I have NO choice anymore. I can’t be what I am not without it making me very, very sick. And since about April when my seizures came back I’ve been steadily getting very, very sick.
What the unwilling-to-see majority don’t get is that I’m not sick because I am Autistic. Sitting by the Lake and able to run my hands through the sand as much as I needed, and it not being a big deal if I was quiet, or noisy. Where I could eat with my hands, get dirty, rock back and forth, hum, script, ramble my endless facts. I was just fine. And when something came up, I could deal with it. In an accepting, accommodating environment we thrive.
So I’ve been taking a social media/comment reading break because I don’t want to get any deeper into this burnout. It’s helping a lot. In the last few days especially I find myself communicating more with those closest to me. I’ve not just gone silent online, I’ve been quite silent offline too. Most days I’ve only been saying a few words verbally. When I’m like this I don’t even listen to music.
I have some very big life decisions that need to move forward now. I’ve been through a books worth of life experience in the past 3.5 years. It finally feels like I have come through to the other side of it. And after being online for almost 19 years it feels like it’s very important to work through most of these decisions in a safe, supported environment. I can’t always just fight for those spaces. I now need to take time to use what I’ve worked so hard for. To walk my talk. To accommodate myself.
And to sit and watch and photograph more sunsets like this.
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