Published on 12, July, 2020
Apologies for the very personal post. There's a lot of 'I's because I write about the situation I am in.
A few months ago I left my long term job in a foreign country. I did this for a number of reasons. Pollution, political instability, greater stress, and a sense that my focus and ability was in decline. I think it was a sound choice, as the longer I was there, the more ill I was.
I am now back at home. I am in my late thirties, living with my parents. We have a better relationship than before, and we - fortunately - do not need to worry about many issues. It is calming. My mental and physical health has been much better than since I can remember. I've been reconnecting to people important to me - most of which were positive and re-affirming (with one exception that seems to have found my words and intentions twisted in bad faith or because of something with them) - and had a clearer sense of self, of what I've done, and better relationships with people.
And yet I have terrible insomnia and an anxiety that interrupts my poor sleep. I find myself endlessly on edge, with heightened sensations for long hours, exhausting me. I get headaches and ringing ears and tiredness. I can do small tasks and keep a routine of walking and exercise that keeps me well, but I feel like I am in such a swamp. My mind keeps spiralling - with physical side effects like keeling over crying - into such self-negating bleakness. I know I shouldn't, and I keep knowing that what and where my mind goes is not true, but it keeps going there. I am in the position I wanted to be - where I have free time to relax, spend time with my parents and finally enjoy their company, and think and plan what I want to do next. The future though scares me: I can't imagine anything. A complete blank. I used to have all sorts of ideas and drives and motivation, but it's nothing. The future seems like a large empty room that will be a tiring struggle to get across. I look back at what I've done, and I was getting a sense of contentment, and a sense of I actually managed to do this and this despite limitations - and it just sinks into oblivion. I feel like nothing, and worse, that I have wasted so much time and there is no more time to do anything in the large white room. People in passing say they are envious of the position I am in, say that I can now choose to do what I want to do, and that the world is my oyster, but I have this perpetual sense of horror, this fear of doing anything, and this endless sense of my body and mind being tirelessly tiresomely on high alert.
Your experience sounds not dissimilar to what happened to me. I pushed myself so hard for so many years, masking all the time and constantly in an anxious state on a daily basis. I finally burnt out and had to give up work. However even when the constant pressures of work were no longer there the constant anxiety remained.
When the body lives with a state of high anxiety for a long time that becomes the normal state and there is a high level of 'baseline' anxiety. When it's really bad I can wake up in a state of panic and remain constantly on high alert, hypervigilant to the slightest sound, all day and all night. Often for no apparent reason.
You have been through a lot of change recently, moving country and leaving your job. Autists struggle to adapt to change. We also struggle with uncertainty and it sounds like you have a lot of that also. The future will likely seem overwhelming when the options are endless.
James said:greater stress, and a sense that my focus and ability was in decline. I think it was a sound choice, as the longer I was there, the more ill I was.
It sounds as if burnout was building in your old job and leaving has allowed years of pressure to release.
It may be helpful to review the list of the signs of autistic burnout in this article, to see if you identify:
https://theautisticadvocate.com/2018/05/an-autistic-burnout/
James said:I have this perpetual sense of horror, this fear of doing anything, and this endless sense of my body and mind being tirelessly tiresomely on high alert.
Often autistic burnout is associated with exhaustion. However it can also present as a heightened state of anxiety and hypervigilance, being stuck in a hyper aroused state. There is an interesting article here about this atypical burnout:
https://emergentdivergence.com/2023/05/12/creating-autistic-suffering-what-is-atypical-burnout/
If it is autistic burnout it can take a long time to recover from. It's generally accepted that the best way to recover is to remove as many external pressures and demands as possible, whilst focussing on special interests which are so important to autists. You have already done that to a large extent but you are still experiencing pressure to plan for the future.
The comments people are making could be making you believe that you should be doing something. You don't need to do anything right now unless you want to. You have stated that you are in the position you wanted to be.
James said:The future though scares me: I can't imagine anything. A complete blank. I used to have all sorts of ideas and drives and motivation, but it's nothing. The future seems like a large empty room that will be a tiring struggle to get across.
This is something that mindful thinking may help with. If you find your thoughts about the future are scaring you then don't go there at all. Try to concentrate on the present and your recovery. The future will evolve once you are in a better place.
If you have spent a long time devoted to your job you may not have intense interests to fall back on. I would suggest something non demanding, a small project to focus your mind in the short term. Maybe you could try some of the free courses available online (Future Learn, Open University, etc) without any commitment needed.
Sorry for the difficult question - but does autistic burnout include suicide idealisation?
It can do for some people. This article from here on the NAS website states "Some people related an increase in suicidal ideation and suicidal behaviour".
https://www.autism.org.uk/advice-and-guidance/professional-practice/autistic-burnout
It is also possible for autistic burnout to lead to depression. Particularly if the person loses ability and regresses to the extent they can no longer function to engage in their interests. Autistic people are hugely motivated by their interests and without them life can seem meaningless.
The distinction between burnout and depression is certainly not clear cut. It doesn't help that the medical profession currently does not recognise autistic burnout. There is a petition online somewhere to try and get that changed.
My personal view (others may disagree or experience it differently) is that if the autistic person still maintains a desire to engage in their interests, even if they do not have sufficient functioning to do so, then that points towards burnout. If the person loses interest in everything they used to enjoy then that can be an indicator of depression.
Personally the only time I have experienced significant and prolonged suicidal ideation was when I was put on antidepressants to 'treat my anxiety'.
If you are experiencing that and there is any risk that you may act on those thoughts then please do seek support.