autistic burnout

Autistic burnout is extreme long-term exhaustion and overwhelm triggered over time. Where the stress of coping with life’s demands exceed the autistic persons ability to cope. We may loose the ability to carry out everyday tasks, loose skills we usually have and experience increased sensory difficulties. This can be mistaken for depression in many undiagnosed people.

What I didn’t realise until I was diagnosed and found out about Autistic Burnout, was that I had found a way to cope. I realised that most weekends, my inability to want to do anything, and my lethargy, twinned with not wanting to open the curtains, playing the same TV shows over and over, was my brain trying to regulate itself. It also explains the snappiness and heightened bluntness at my partner as I desperately try to recharge my batteries and keep the exhaustion at bay. My job in the film industry has me working very long hours, usually 10-12 hour working days, often with 2-3 hours travel on top of that. This can extend to 6 days a week too. I have been working like this for 15 years. Whilst trying to figure out what’s been going on with me, I think I’ve figured out that I’ve not really been able to truly recover, I was in and out of Autistic Burnout regularly. My divorce from my ex-wife allowed me to rest and Covid lockdown allowed me to rest.

So, the characteristics of Autistic Burnout are as follows:

• Chronic physical and mental exhaustion

• The ability to do things you can normally do diminishes

• Increased sensory sensitivities and intensity of emotions

• Increased support required to manage daily life

• Reduced ability to mask

• Low mood

• Not wanting to be around others

• Low self-esteem

• Suicidal thoughts

It can be triggered by periods of transition or change, social fatigue, increased demands and expectations being put upon us, not being able to recharge fully, lack of support, sensory overload.

Recovering can take time and recognising what it is important. I am under no illusion now that I am experiencing Autistic Burnout since being diagnosed.

In order to prevent autistic, the following may help.

• More rest and sleep

• Figuring our what uses up most of your energy

• Eating well and drinking plenty of water

• Doing things you enjoy

• Connecting with like-minded (Autistic) people

• Make adjustments that are reasonable to your life

• Set boundaries and say no more often

• Schedule solid re-charge time to allow yourself to get through it

It’s only recently that Autistic Burnout has been properley identified and defined. In 2020, it was defined by Dr Dora Raymaker.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7313636/

Autistic burnout is a thing and is debilitating to the individual experiencing it. It affects the individuals ability to live, their ability to work, maintain relationships and enjoy life. But as we have discovered it’s not forever and it can be overcome. With the right support and reduced demands, it can pass.

REST. Look after yourself.

first steps

In the days after my diagnosis I felt a very strong need to connect with anybody I knew who had Autism. The list was short. Very Short. There were two people I knew that weren’t children, who were Autistic.

I reached out to both. It has been incredible being able to talk to people who understand. I would urge anyone to do that too. I received some great advice, which I’ll share in this blog as I go through it.

I did reach out to a Facebook Group, but this didn’t go very well. Being new, I didn’t really understand the negative connotations of the language surrounding Autism. I used the phrase “High Functioning”, and was quickly told off. I left the group immediately feeling un-supported and pretty bad about myself. (Not sure what the lesson is there.)

I don’t really know what my partner was going through. She didn’t know what to do next I suppose. The feelings were negative. I remember that. I think my Autistic brain has already repressed it. I’ve realised I do this with small negative events. I forget them pretty quickly and re-create the narrative to make myself feel better. (theres probably a name for that.)

I felt an intense amount of relief and validation from my diagnosis. I am not a horrible person. I am Autistic. I am mis-understood by the world. I'm Autistic. The bad relationships that I have with some people are not my fault. I'm Autistic.

I’ve always struggled to keep friends, I’ve blamed life for the most part; moving on and the other person not keeping in touch. I suppose what happened was that I didn’t show enough interest in that person for them to keep in touch.

One thing that most men have in common is Football. People bond over it intensely. I don’t care for it, so I’ve never maintained friendships via it. I’ve noticed people do maintain friendships based on shared interests. I dont fit the stereotypical Autictic mould of having obsessive interests. I have a select few interested. Film. I’m not obsessed with it, but I’ve always loved the escape of watching a film. I suppose I'm escaping from my own life when I watch them. Although I’ve always been a very good reader, to the point where I was the best reader in the class at school, I never kept up with reading Fiction. I’ve only read a handful of books in my life. But films allowed me to digest the story, in a heightened sensory way.

I do however read an insane amount of News. Skimming mostly, but reading none-the-less. It's become a habit.

I’m aware that I’m digressing. This is going to happen. I’m not really editing these posts. The stream of consciousness thing is probably going to be a theme. I want an honest account of my experience to help others. Nothing is contrived.

One of the Autistic people I know told me about the Autistic Advocate - Kieran Rose. He’s an academic, researcher and is Autistic. He did a series of training videos about Autism, designed for recently diagnosed adults, professionals, parents of autistic children; pretty much anyone to be honest. These videos are specifically about reframing the narratives around Autism and helping people to understand Autism from an Autistic perspective. This blog is the result of me watching these videos. It blew my mind wide open. I think I'll write about these learnings next.

my diagnosis

The film industry has been shit lately. The writers strike is still having an effect as swathes of projects are still not fully approved or green lit, couple that with the streamers, Netflix and Amazon, now focusing on quality not quantity, in search of competition beating programming to draw audiences in.

There is a lot. Life is a lot. The never ending treadmill we’re on with kids is taking its toll. It’s slowing down, but then gets faster, and then slows down, and the gets faster again. Never ending, filled with pockets of joy, but relentless.

With the enforced time off, my partner suggested looking at a private diagnosis, as I’d been on the NHS waiting list for over a year. I investigated, and found someone. And booked it in.

The Dr called me when I was driving home, probably about a week after I’d enquired about an appointment. I’d been initially told I’d have an appointment within a week, but that obviously wasn’t the case as the Dr was only phoning now. He left a message, as I didn’t recognise the number. I pulled over and immediately called back. He needed to see if it was Autism and not ADHD. I answered a few questions and he confirmed that it probably wasn’t ADHD. He texted me two tests to complete when I got home that night and to send back to him. I did. The first was revealing. It was the RAADS-R test. I scored 145. The threshold was 65. I felt like I’d been diagnosed there and then. The other was a less meaningful AQ, where I scored 45.

I submitted the results and the Dr recommended I book as soon as possible. So I did and the sate was set. I have no impression of what would happen, he only mentioned I would be sent a series of questionnaires to complete and then I would have a 90 minute appointment. At this point it’s two weeks away.

I received an email confirmation, with 4 tests to complete, RAADS-R (which I’d already completed informally), AQ, ASRS-v1.1 and WFIRS-S. If you’re new to the world of Autism, expect a lot of acronyms. (I personally hate them.) I also had to complete a further document, with questions (that didn’t make much sense) and also a document for someone close to me to do (ideally a parent, but in my case it was my partner.) I sent it all back a few days before the assessment.

Assessment Day arrived. I didn’t know what to expect in all honesty. I was attending a private mental health hospital, somewhere I’d never been before. It was a 20 minute drive. I listened to some calming classical music on the way.

I arrived. I didn’t know where to park, as there were few signs. I parked in the first place I saw. The hospital was in, what looked like, an old religious building. The receptionist checked me in, gave me a badge and asked me to wait in the cafe to be called in. The Doctor was running late. I sat, still listening to the classical music. Several members of staff came in to the use the knackered old coffee machine and fill up their water bottles. A normal looking family came in; mum, dad, two kids, a boy (probably around 10) and girl (probably around 13-14). I wondered why they were there. Then the DR arrived.

I followed him into a small room, with a small window. He sat in front of me, with a laptop. He typed as he asked me questions. As I explained and sometimes struggled he finished my sentences, it was as though I was meeting with the first person who’d ever understood me. The 90 minutes flew by. It finished with. “So yes, you’re a level 1, High Functioning Autistic. Give us a couple of weeks do write up the report. Bye.” And with that I was sent on my way.

I called my partner. She had a million questions that I couldn’t answer. I went home, and I told her what happened. We didn’t really think about what it would mean to have the diagnosis. Now we were going to find out.