Burn, Baby, Burn – Autistic Inferno

This week in #TakeTheMaskOff we are talking about Autistic Burnout.

When I was 22 I went to college and did really well. I was getting high grade after high grade, making new friends, learning about myself as well as my subjects, and everything was fantastic. And then, halfway through the year, I started to fall asleep at my desk. I slept all the time even when I was supposed to be studying. I fell asleep in my favourite class. I slept in the break room propped up on the table or hanging off the end of the minimalist (read: extremely uncomfortable) royal blue two-person sofa. To the consternation of my family, I went to bed early every night, slept in late at the weekends, and starting having midday naps whenever possible. My stress levels rose even higher than they had been in the past six months, but no matter what I did, no matter how much I slept through, I could not shake the feeling of utter exhaustion. It felt like I was trying to wade through cooling tar. Then I blacked out and fell down the stairs.

I went to the doctor, who for some unknown reason decided that I was suffering from a mystery virus (even though I didn’t feel ill as such, just exhausted and dizzy), and gave me a sick note to explain why I needed extensions on some of my papers. Somehow I staggered through the rest of the school year and emerged battered but triumphant, clutching my pile of A grades.

I was high on adrenaline from success, I suppose. I was fine for a few months, and then my anxiety, exhaustion, and agoraphobia returned with a vengeance. I couldn’t cope with being around people more than an hour or so per day. I spent 90% of my time hiding in my bedroom, too tired and overwhelmed to do more than my assigned chores around the house (cleaning, cooking, and laundry) before disappearing into my sanctuary again. I had burned out back in the January, but had forced myself to keep going and therefore ended up so badly burnt-out that I couldn’t even leave the house. I slept, again, so much that my family grew alternately concerned and annoyed. I couldn’t find work although I was honestly trying hard to do so. I don’t know how I would have managed if I had found work, so maybe it’s fortunate that I didn’t until nearly a year later.

My point is that it was never recognized for what it was. It was called anxiety, depression, laziness, stubbornness, “not-trying-hard-enough”, and numerous other names ranging from the inaccurate to the insulting. While it’s true that I was both anxious and depressed, I firmly believe that what I experienced was autistic burnout. My world, both external and internal, had undergone vast paradigm shifts in that year, and added to the physical and mental exertion of going to college (another new thing for someone who had never set foot in a school before) and writing twenty-one papers in nine months, the result was an exhausting cocktail of effort and confusion and new experiences. My brain and body attempted to shut down for self-preservation, but I forced myself to ignore their protests and succeed because I was desperate both to prove myself and to gain some kind of academic qualifications.

Autistic burnout is not a buzzword. It’s real, and it can be debilitating. It’s very important to try to take regular time-out from the things that overwhelm you. Regular rest and proper relaxation – in a way that makes you relaxed, not necessarily what other people suggest – can be the pressure valves that help you not to burn out.

If you do burn out, try not to force yourself to carry on with your normal routine. Your body is telling you something and you must listen to it. Take time to heal and be nonverbal if you need to be. Try to set boundaries with your family and loved ones (if at all possible) and help them understand that you need the space and quiet and rest in order to recuperate.

Don’t forget to reach out in any way you can to the warm and helpful autistic community online. Having friends who truly understand what you’re going through is one of the best ways to start healing from damage and burnout.

And most important of all, remember that you are not broken. Damaged, perhaps, but you are whole and you are absolutely unique – and that is a beautiful thing.

 

University, Anxiety, and Shutdowns

This isn’t what I had planned. I wanted to start off with this blog on a positive note, saying how great university is and how much I enjoy it.

Well, it is, and I do. But it is also a high-stress environment for all sorts of reasons, two of which I am going to address in this post.

People. People are great, as a vague concept. As a reality they are loud, confusing, colourful and touchy, especially in large groups when they all tend to merge together into one horrific mass of riotous noise and clashing, painful colours. When I’m alone again I always find it faintly amusing that so many Neurotypical people make a fuss about Neurodivergent people not understanding the concept of personal space. Have you met yourselves? When you stand in a bundle all down the corridor outside my classroom and I’m trying to walk through as quickly as possible, you never move out of my way, and when you are walking past me, anyone would think I was invisible.

I have a number of new friends at university. I enjoy spending time with them. However, as a general rule, group study doesn’t work well for me. People start talking about nothing, I can’t concentrate on what I’m reading, and just when I have managed to cram a relevant sentence into my overstimulated brain, one of them decides to ask me a question related to the conversation I haven’t been paying attention to for the past ten minutes.

People are great… until you have to deal with them in large numbers several days a week. This is why I don’t tend to do much on the weekends. I need time out to recharge.

Deadlines. Now, up to a point, deadlines are a useful thing for me. They can give me a structure, a purpose, something to work toward. If I have no deadlines, I probably won’t do anything at all.

However, I have problems sometimes with concentration and ability to stick to my task. There are times when I can study a subject for days; there are other times when I stare at a screen of text for forty minutes and cannot take in any of it. If I have a deadline during one of the latter times, things become very scary.

Last night I had an anxiety attack followed by a shutdown. I was nonverbal for several hours as a result. I’m getting worse because I am so stressed.

Tutors and lecturers think that we all need to have our ways of learning mixed up every now and then because otherwise it becomes ‘boring’. Believe me, I don’t need this. I learn best when a lecturer is speaking and I can write notes.

Asking me to do a group presentation is certainly not boring, but it sends me into immediate Panic Mode.

Yesterday was a day when I couldn’t concentrate. I tried so hard to gain information ready for my group meeting today, but after half an hour I had only a few sentences of notes, and I felt like a failure.

FAILURE ALERT! FAILURE ALERT! All the systems in my brain stalled to listen to the Failure Alert.

“Rosa has failed,” it chanted, over and over. “She cannot concentrate on a simple task. How will she pass any of her degree modules? How will she ever get a job? How will she do any of the things she wants to do? She is a failure. She will lose everything. She will lose everything she wants. She will keep failing. She is a failure.”

Anxiety levels rose to boiling point and I started to tug my hair. I don’t pull it out, but I tug on it because the sensation is sort of helpful when my nerves are spiralling out of control.

I had been texting my boyfriend during this, and he decided to Skype me.

I discovered a problem when I clicked ‘accept call’. My voice wasn’t working. The stress levels had reached such a height that I literally couldn’t talk.

In the past when this has happened it has usually been when my family was angry with me, and going nonverbal has had disastrous effects in those situations. Realising I couldn’t make my words come out of my mouth, I started to cry.

May I just say, my boyfriend is wonderful. Endlessly patient, kind, understanding, accommodating, and gentle with me, he makes me feel safe and cared for. He keeps telling me it’s ok to feel this way, it’s ok to not be able to do this and for someone with my fears and experiences that is absolutely the most comforting thing anyone can say to me. Validating a person’s feelings and their reactions to those feelings is the single most important part of any relationship, but especially so when one of the people in the relationship has an anxiety disorder and/or is autistic.

He kept talking to me, telling me it was ok that I couldn’t speak, and eventually asked me if I was able to type responses. I could. I did. We talked for the next few hours in this way. It was exactly what I needed.

This morning my words are back where they should be, and my anxiety is back down to manageable levels.

Stress is horrible, terrifying, and when you lose your control over it you can feel like the world is crashing down around your shoulders. But if you can find people who truly care about you and will support you and help you through your worst moments, who will love you and calm you through your meltdowns and shutdowns, you can survive. Better than that, you can win.