Dissatisfied with the lack of information available on autism in adults, in 2018 Dr Natalie Engelbrecht and Eva Silvertant and founded Embrace Autism, which is intended as a platform to distribute research and experience-based information on autism.
Embrace Autism puts a uniquely positive spin on Autism and has a huge amount of resources to find out more. It is also home to all of the online tests for Autism and other things, which can help on your journey to diagnosis.
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.
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.
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.