I am a glass-half-full girl. Optimism and positivity come very naturally to me. And I don’t take any credit for it. I was just born that way. Simply all Grace. No effort at all.
For those who don’t know me, I had to state this upfront because this post is being written from a space of pain — which is very real for me right now.
I am close to completing six years in burnout, but have mostly stayed sane and cheerful despite the challenges.
I laugh a lot. Goofy, often. I unapologetically say “No” when I want to. Indulge in comforts. Sleep when I want to. Stim a lot. Have close-to-zero obligations. Do close-to-zero socialising.
I mean, for me, having even three people in my room — including family members, close friends — freezes my brain. It simply doesn’t know how to process the sounds and information coming from three different sources.
I have mostly stayed sane and cheerful.
But there have been these days — let’s say, about once in a couple of months — when I go through textbook symptoms of depression. Teary-eyed all day. No motivation to get up. Worried sick. Wondering if my life would end up this way, with all my unexplored and unexpressed potential buried with me in my grave. Wallowing in my pain and a sense of defeat in life.
But thankfully, since it happens only once every couple of months, a small corner of my being holds a lamp for me and whispers, sometimes sings: “This will soon pass. This will soon pass. Enjoy your sadness while it lasts!” with a wink and smile.
So I cling to that small corner. I stoke the wick, keep replenishing the oil in the lamp, until the light expands and fills up my entire being. And then, I am born anew the next morning.
But there is another story behind “everything is fine”
Now, let’s look at some rough statistics.
Autistic burnout among late-identified adults, especially women, can be profoundly debilitating. More than 70% of people in some studies report suicidal thoughts during burnout episodes. And I personally know peers who have made attempts too. (See source at the end.)
Why do I want to talk about this?
Sometimes I feel that no one understands the extent of my disability because when I do come out of my dark cave — for a few hours every day — I appear “normal, cheerful, and like everything is fine.”
Yes. In a way, it is. In fact, I am going to write an entire post about what a lifesaver my autism identification — and even more so, my burnout — have been.
But in another way: IT IS NOT. A lot is going on behind the scenes of “everything seeming fine.”
I have a brain–nervous system functioning scale that I share with my family on a somewhat daily basis, so that they know if and how to engage with me on that particular day.
#10 is my memory of the person I used to be before my burnout hit. Can make a to-do list for the day and get through it systematically. Well mostly. Can read a 100-page book in a sitting. Can be part of a gathering. Can be in shaded outdoor on a summer day, and comfortably visit the city. Need about 8 hours of sleep per day.
#7-9: In the past six years, I have really not gone past #6 to know what this zone would be like!
#5-6: Can do 4-5 tasks like organising my room, shopping, cooking something, etc. Can read upto 4-5 pages. Can be part of a small intimate group of friends / family for a few hours – only if it’s not small talk! Can step out for a few hours in Auroville. Need about 10 hours of sleep per day. Can listen to music and bird calls. I have spent about 10% of my past six years in this zone.
#3-4: Can do about 2 tasks – like a supermarket trip / doing dishes – for the day! Anything more can create an anxiety attack. Can read upto 1-2 pages. Can hang out with 2 persons at a time. Can step out for an hour in Auroville. Cannot listen to music or early morning shrill bird calls. I have spent about 30% of my past six years in this zone.
#1-2: Cannot even understand the micro-steps involved in brushing my teeth. Any demand can create an anxiety attack. Can read a few lines, but get exhausted soon after. Can at best interact with 1 or 2 people in a day, including family members living with me. Can’t step out of my dark room. Listening to music or bird calls can create anxiety! I have spent about 60% of my past six years in this zone.
And ‘0’ is possibly the suicidal-attempt zone. Thankfully, I have never been there.
Every day is a different number, depending on many variables. And I am slowly getting the hang of understanding those variables through trial and error.
What I want to do next is write about what life in the 1–2 zone actually feels like. Because that is where I have been spending 60% of my days!
(Statistics Source: Measuring and validating autistic burnout - Jane Mantzalas, Amanda L. Richdale, Xia Li, Cheryl Dissanayake - - April 25 2024; https://doi.org/10.1002/aur.3129)
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