Autistic burnout. It’s rough. It’s tough. But it doesn’t have to beat you down.
I’ve been trying to blog on this subject for a couple of weeks. The truth is, I’m learning that burnout takes a longer amount of recovering than I realized. I’m still experiencing burnout even as I type this. It’s also a never-ending cycle.
Let me start from the beginning.
I had a dream a few days ago. I was walking and running with all the energy in the world, my body wasn’t holding me back and I wasn’t huffing or puffing. I love those dreams. When I woke up, I decided I wanted to try training for a 5k. I usually hate exercise. I associate it with people yelling at me and it being a scary, overwhelming experience (we’ll touch on that another time). I really enjoy yoga but I haven’t done it in months so I haven’t felt comfortable going to a class. So, I decided to download the Couch to 5k app, go to the lake’s walking trail, and do a little training there. I decided on this because I would be in control of the pace of the workout and the intensity. As I began my walk I was encouraged by Britney Spears’s “Stronger” telling me that I was “stronger than yesterday.” I started reflecting on “yesterday”. “Yesterday” I was stuffing my face in an ice cream sundae from Braum’s and today I was on the running track. I was both mad at myself for the choices I made but happy that I decided to change the name of the game.
As I started my routine, the sundae (and the extra bowls of cereal, the poptarts, and ice cream all from the past 2 weeks) started catching up with me. Let me put my body image into perspective for you- as I was doing the two-minute running portion of my exercise, my body fat was clapping against itself. I didn’t know if I should feel encouraged because it sounded like my body was encouragingly applauding me along, or if I should feel humiliated because all of this excess fat was swishing around in the air, banging against itself, and creating a siren that rang “LOOK AT ME! I’M ATTEMPTING THE THINGS!”
I didn’t last very long. I only did half of the routine. I became discouraged, found a park bench, sat, and sulked. I’m the master of sulking. I looked over the horizon of the lake and thought to myself, “here’s another thing I’m attempting at that I’m quitting. Again.” Then I thought, “Why do I have to quit? Why am I quitting? Is it just because it’s hard?” I decided to get up from the park bench and make the long (to me) trek back to the car. As I was walking, one of my favorite songs from middle school came on Pandora, “Fly” by Hilary Duff. In her encouraging fashion, Hilary sang to me, “When you’re down and feel alone, just want to run away. Trust yourself and don’t give up. You know you better than anyone else.” So, I decided I wouldn’t give up, I would just adjust my workout to fit in a way that better suited me. I decided I would do water walking and water jogging instead. My knees still hurt but not as much.
I recently reached out to a local group in my area, Aspie Adults of Oklahoma City. The group usually meets in Norman once a month. I asked the leaders if they could have a group closer to where I live in OKC and they said that was great- if I wanted to pull it together. I struggled with the decision for a couple of months but decided I would give it a go. A wise individual (Okay, Hilary Duff) once told me ““Fly, open up the part of you that wants to hide away. You can shine. Forget about the reasons why you can’t in life and start to try. ‘Cause it’s your time, time to fly.”
So, I decided to take the plunge and go for it. I would start a North OKC chapter for the Aspie Adults of OKC.
At first I decided I would have the meeting at a local library in the middle of town. I found out that the public library in Norman lets the Aspie Adults of OKC reserve a room for free. The public libraries in OKC have rooms that cost anywhere from $30-$100 an HOUR. It may not seem much to you, but that’s much to me. So, I reached out to a local LDS (Latter-day Saints) Facebook page for my area and asked if anyone had any ideas on where I could go that was fairly cheap or free. I was hesitant about using an actual church building in my congregation because I know some people feel triggered by religious environments and wanted to keep the group neutral. I would stay awake at night and worry about where I was going to have the meeting. Finally, someone in my stake (Mormon term, look it up) reached out to me and said they would let us use their conference room, free of charge! So, if you’re in OKC and ever need a place to get your electronics fixed, go to Digital Doc off of May and 59th!!!!!! They are great people. They said it was alright with them if I held a meeting every 4th Saturday of each month. Thank you, Digital Doc!!!
The next plan was to come up with the discussion topic. I wanted to do a get-to-know-you activity, while celebrating our diversity, but also acknowledging that we can all come together as one. The first thing that popped into my head was puzzle pieces. I was really hesitant with this thought because puzzle pieces is usually associated with Autism Speaks and that particular organization is very triggering to a lot of auties. Basically AS doesn’t have any auties on their board of directors and also things autism is a thing that needs to be cured. They have used the puzzle piece to represent autism as something that is puzzling and a cure (the missing piece) needs to be found. That’s a very butchered version, but that’s the gist. To me, the puzzle piece represents something I have been trying to find all of my life. I’ll speak on that another time. For this exercise I was preparing for my Aspie meeting, I was wanting to use the puzzle as a way to show how each other in the group were different but could come together and find their place in our meeting-it wasn’t even related to autism at all. So, I reached out to an autism women’s group on facebook and asked their opinion. They suggested I make the pieces in a shape that didn’t look like traditional puzzle pieces. It was a very helpful comment and I took the fellow-aspie’s advice. I decided to buy some new coloring crayons and some markers at my local Target. I already owned coloring pencils. I wanted to make sure there were different “artistic” methods of creating a personal “all about you” puzzle piece that would speak to each person.
I arrived about 30 minutes to the meeting. I had brought name tags. I’m really bad at names. I either remember your name or your face, it takes me a long time to connect both. I learned that some aspies at my meeting had a disorder of some sort that caused them to not ever remember names so the name tags were a great idea. Good job, me. Digital Doc did a great job setting up the tables and chairs the way I requested, and I arranged all the art supplies and puzzle pieces the way I wanted to.
I ended up having 6 people (excluding myself) show up to the meeting! Some of them were leaders and members of the group in Norman and I believe a couple were new. One of the members told me “one fact about aspies, they’re either really late or really early.” So, in true aspie fashion we started 30 minutes late! It was fine, though.
I prepared a few questions that we could discuss. My first question was “What was life like for you growing up with autism? Did you feel like you fit in or did you feel like you were an outcast?” I heard stories that were like mine- a few members were diagnosed later in life and a few were diagnosed in childhood. They all had feelings of isolation.
The next question I had was “What advantages do you feel come with being on the spectrum?” Aspies are known for having special interests. Some suggested that their special interests helped them be self-reliant. For example, one of my member’s special interest is religion and he has been able to be a pastor. Therefore, his special interest of religion has helped him make a living. My favorite, and I feel like the best comment was made by one individual who said, “Once you harness it, you become a great anthropologist.” So true, the one thing that has gotten me through the NT (neurotypical) world is copying behaviors I’ve seen by others.
The last question I had for them was, “Do you feel like you have a place or have found your place in the neurotypical world?” This is the question that I was most anxious to get answers from. I wanted to know the secret of fitting into the world around me. However, everyone answered a big ole “NO.” It was both discouraging but comforting to hear that I wasn’t alone in my feelings of isolation.
After our discussion, I asked those who felt comfortable to tell us what they put on their puzzle piece. I received a round of applause when I mentioned I had written “Weight Watchers” on my piece because I had lost 50 lbs on the program. One person had shared with us a drawing on their bearded dragon, I think it was, because they collect amphibians. Another person was a truck driver and shared a drawing of a truck. My favorite one was an individual who said “I like Star Trek.” and held up their drawing of a Star Trek space ship thingy thing, for lack of knowledge of technical term.
I ended the meeting by having us put the puzzle together. My parting statement was, “Although we may feel different, we fit in somewhere. Just like any puzzle, it may take time to find the spot where you fit in perfectly, but I promise you fit in. Especially here, at Aspie Adults of OKC.”
All in all, it was a very successful meeting and I had a great time. I was told by the members that they enjoyed the meeting as well. That was very encouraging.
However, it took a lot of energy. I was high on energy after my meeting and wanted to do a lot of things, I didn’t want to go home. I think I was running on adrenaline. My husband had been called into work that morning unexpectedly and didn’t have the energy to go on a date with me so I went by myself. I ended my evening at a coffee shop, listening to a live performance. I was the only member in the audience, which was fine by me. It was a man singing and playing his guitar. He asked me what I liked to listen to and I told him “pop.” Poor dude. He tried, unsuccessfully, to play Britney Spears for me. I later told him a song by the Black Crowes would suffice. So, he played “She Talks to Angels.” I think my dad would have been proud of me. (Don’t tell him I had to do a quick Google search first.)
Saturday (meeting day) was great. The day after was a whole other story. When I woke up Sunday morning, I already off. I felt incredibly guilty because I didn’t have the energy to get up, go to church, and teach my primary class that day. I woke up with a sore throat (battling a sinus infection, which is NOT sensory friendly) and I was just overwhelmed from the start. I was mad because I was in a bad mood and didn’t know why (Oddly enough, I still have a hard time recognizing burnout at times) and ended the day in a meltdown. The meeting went great but the weekend didn’t go as planned. I didn’t get to spend time with my husband in the way I had planned all week. We were supposed to go fishing that weekend but so many other things came up that we didn’t make it. So, disappointment and exhaustion ended with a mild meltdown Sunday evening.
I think the most frustrating thing is that I need so much downtime to recover mentally from all the activities I put myself through. I don’t give myself the time I need, mainly because, sometimes, there’s not time to give yourself.
Needless to say, I think this week is going to be low-key and activity-free. Although, I’m planning to go to Farm Yoga. Stay tuned for a blog post on that. I already have an idea planned for my next meeting on the subject I want to talk about. I’m very much looking forward to that!
Thank you for making it to the end of my blog post. I apologize if any of it was confusing to follow. Writing while experiencing burnout is pretty interesting and exhausting but I wanted to give you guys something!