Notes From A Tricky Brain

“[research participants] describe the experience of autistic burnout as chronic exhaustion, loss of skills, and reduced tolerance to stimulus. They described it as affecting every part of their lives and lasting for long periods of time.” Dr Dora Raymaker, “Understanding autistic burnout”, March 2022, available online at National Autistic Society

It’s really difficult to describe autistic burnout to neurotypical people. Many would assume that it’s simply some kind of fatigue that can be sorted with a quick nap. The first time I experienced it post-diagnosis, I went to the GP to query whether I could have Chronic Fatigue Syndrome (CFS); I was wrong, other than my use of the word “chronic“. It was late summer 2023 and I had been utterly, indescribably, exhausted for months. I’d recently completed my undergraduate degree with the Open University and at first I put it down to my working so damn hard for those final exams. But no amount of rest was healing me. The GP never mentioned my autism in that consultation but, having crossed CFS off my list, I did some more reading and eventually came across autistic burnout. Another learning curve from the post-late-diagnosis-hung-out-to-dry situation that I’m still struggling with!

It would take months of me sleeping all afternoon, EVERY afternoon, feeling like I was wading through treacle whenever I tried to walk, getting overwhelmed with tasks and chores that needed done, and an even more heightened sense of noise and light (I haven’t opened my bedroom blinds since) than usual and very (clinically) depressed. However, I eventually started to feel a bit less overwhelmed and embarked on my MSc in September 2023.

To put the next part of this story into context, I lost my job due to mental health difficulties in 2011 and hadn’t done anything out with the house for a whole 12 years. Now, lets consider some of the triggers of autistic burnout:

• Masking; hiding autistic traits and behaviours in order to appear “normal” around new people. I didn’t want the fact that I have autism to be the first thing I tell people about myself…or the second, third or fourth thing! In fact, I didn’t want to tell people at all. I wanted to appear to be functioning in the same way as everyone else.
• Stress; not only the normal stress that comes with undertaking such a thing as an MSc, but also the stress of having to adjust to a new environment where noise, for example, is a lot more intense than what I was used to. At least at home, I can remove myself from any source of noise to help me regulate.
• High expectations; being an MSc student, there are not only high expectations coming from tutors and teaching staff, but I also have very high expectations of myself. At times, perfectionism is a real problem for me.
• Life-changes and transitions; the sudden jump from 12 years of living in a very small world, to having to try and adapt to a brand new routine that involved me being on rush-hour trains, and in classes on a busy campus all day.
• Insufficient support and reasonable adjustments; I have to admit that I really couldn’t have asked for more support from the university, and not just from within my department…but this has come after the fact (because no one knew I was struggling).

Is it really any wonder I started to flounder?!

Semester 1 was manageable. I had done enough “dry runs” to know exactly where I needed to be on day 1, and continued to find buildings well in advance of classes so that I was never lost or stressed, trying to find different rooms in every imaginable corner of the campus. I enjoyed my classes, got on with my classmates and passed all of my exams with decent grades. Then we hit semester 2. In retrospect, I was probably still burnt out from the December exam period by the time we returned in January. I then had to adjust all over again; new timetable, new (busier) classes, new teachers and tutors. That, coupled with the list above, just got too much. I stopped doing any work out with classes; each morning, I’d lift my bag from wherever I had dumped it the night before and go for the train. I was quite dissociated a lot of the time, so wasn’t really managing to concentrate. Finally, I was taking a module which required us to undertake a group project as part of the assessment…that was the final nail in the coffin. I got on with all the members of my group, on a one-to-one basis, but I just couldn’t cope with group WhatsApp messages, co-working…at the same pace as (I presume) neurotypical students. I went to my advisor and asked if I could do the project alone…that’s right, I asked to do a project meant for four people ON MY OWN! Reluctantly, she agreed, but by then I’d realised that I just wasn’t going to manage to continue. Burnout had beaten me.

In February, I took a voluntary suspension and agreed to take some time away and return in January 2025 to finish my masters. It broke my heart to have to do this, but I knew it was the right decision; I was getting more unwell by the day. Back home, my own Community Mental Health Team (CMHT) had stepped in and I got weekly (now down to monthly, go me!) visits from my Community Psychiatric Nurse (CPN), I’ve seen my Psychiatrist for a medication review and I’m also having monthly review meetings with an autism specialist who teaches at the university; she is under no obligation to do this, but she has been an immense help in preparing me to return to campus and carry on with my studies. And I’m recovering slowly. To keep my brain busy, I’ve enrolled on a couple of Open University modules (I’m an OU addict, at this point) and this gives me routine, and something to focus on each day. But, most importantly of all, I’m looking forward to getting back to Strathclyde in January, and getting my MSc.