Autism Burnout

Yes, changing your environment to suit you is a good idea, wherever this is possible.  Of course, we have much less control over workplace environments and personally I only eventually resolved this by becoming self employed and working largely from home.  

For me, it's all about autonomy.  The more autonomous I feel the happier I am and the more I protect myself from burnout.  But protecting myself also involved removing myself from typical corporate environments (open plan offices, mainly, and anything involving lots of driving around).  Thes places just feel toxic to me, although I must add that I'm surprised they suit anyone other than employers who want to "optimise" office space by getting as many bods into one place as possible, including hotdesking (a particular hate of mine) if the job involves any time out of the office. 

I've also found lots of useful ideas and materials from Aucademy and from Ausome Training.  We can't change our neurology so we need changes from the external environment and also to play our strengths (e.g. in my former office-based accountancy role, my sensitivity was very much seen as a weakness, but working 1:1 as a counsellor it became a strength). 

The best ideas and resources that I have received so far are through this community. There is so much knowledge and experience here. 

Thank you! I will take a look at the video.

What you say about having to change the environment/ situation really resonates with me and is in my opinion also true . Of course, some things can probably not be changed, but I like this idea of trying to optimise your environment for well-being and success. (Probably a healthier approach to try and change things in environment that are possible to be changed, rather than only self-blaming and self-shaming all the time- I am extremely self-critical in that way). 

Now that I am thinking about this, the burnout is probably a very 'normal' response- almost like a self-protection mechanism to allow escape from a hostile environment and situation? Just so detrimental. I personally also realised that I keep going and working beyond my limits- I actually had no clue I was so burnt out until I essentially just collapsed... I guess learning to see the signs before full blown burnout happens is probably also something to try and work on...?

All I know is that at this point, I am responding very positively to time off (though I cannot stay off work for much longer and need to find a long term solution). 

Yes I agree with everything you say. I didn't mention the (potential) AS until I had started therapy. I cannot fault the therapist I had - it was really life changing what I went through. I have since contacted the service again as I feel i need help for "autistic" anxiety which isn't (in my mind) related to worry. It's intersting that I thought perhaps some emotions are not anxiety but they manifest in that way. So in my mind it IS anxiety. But I've found it hard to address these because they are not related to worry.

This time, I had a really frustrating experience at the initial assessment where I mentioned my diagnosis and wasn't listened to at all. I complained but have still been put onto an online generic CBT course despite me saying I have already gone through an intense course and it's a) repeating everything I have done b) not really helping because it's too generic. I cannot blame the therapists but I think it's to do with funding, demand and there needs to be better awareness training at least for when people are initially assessed.

For me, now, I need help with dealing with stress for general every day life. They sent me booklets which tells me to do things I enjoy and breathing and yoga. While these things do slightly help, I need more focused help and practical support. Also support with executive functioning. e.g. My time keeping is terrible no matter how hard I try and this adds to more stress.

I totally agree. School was toxic for my youngest son and yet I kept sending him in - and I feel so guilty about that now. 
My eldest has also found when in paid work that being autistic has made aspects of the workplace extremely challenging for him - the social demands of the workplace - and many other aspects too - meant that he found his job was chipping away at his mental health on a daily basis. He’s yet to find paid work that doesn’t present a serious challenge to his mental health as an autistic person. I’m sure it’s just a matter of finding the right work/job - but it’s not easy.

Whilst it's really good to hear positive reports about therapy, I'm a bit shocked to hear that they said it didn't matter.  There can be so many difficulties with the process of therapy in general and CBT in particular and there's now more information coming out about how it could and should be adapted for autistic people (and not in a generalised way but more individualised, having listened to your needs in a pre-therapy appointment).  

Lisa Cromar gave a talk on therapy at the recent NAS mental health conference and here she is talking to Chloe Farahar of aucademy.  https://www.youtube.com/watch?v=ShhpNjbsGW4

Plus Valerie Gaus has written about CBT for autistic people, although i don't agee with everything she writes.    

And yes, whilst some things can be challenged and maybe replaced with more "helpful thoughts", sometimes it's not actually you but something else in the environment that needs to change.  I personally am very, very tired (i.e it pushes me further towards burnout) when everything is put onto me, even when it squarely belongs with other factors which could change.   

I'm glad you ate starting to feel a bit better. 

Ann :) said:

they don't think it matters for my therapy whether I am indeed autistic or not...

Mine said this too...I was doing CBT at the time but it was more intense course of treatment. I'm glad I did it as it helped immensely with general worry. I got my autism diagnosis separately during my cbt course. It helped me on the road to recovery from my "episode" a couple of years ago. Its not the answer to everything but it helps me chip away at the anxiety.

I'm doing a general cbt cpurse now and it's useless. For instance,  security lights can give me anxiety but this isn't something I can thought challenge.

I thought the pandemic might have ever so slightly redressed this imbalance but it hasn't.  Everyone was wanting to return to normal so they could work themselves to death to buy shite they don't actually need.

Also it's a double bind. I've got where I have in life not knowing I was autistic. I'm finding it difficult because part of me wants to / feels like I should carry on as before. But the other part of me says I don't need to put up with it anymore.  I've always said however, that I don't want to limit myself because of a diagnosis. I'm trying to live life as before but be more informed and aware.

Well, I hear lots of swearing going on, which actually is better than nothing because it flies in the face of any suggestion of "flat affect"  and at least indicates some level of engagement.  It's also entirely on his terms which probably makes it feel a lot safer than the world out there.  

Kate Kestrel said:

But it’s just not possible. The more we force people to continue in situations they are unhappy with the more deeply our problems go and the longer it takes us to recover.

Exactly.  And this begins with school, where many autistic children for whom it becomes impossible to attend are labelled "school refusers", meaning it's they who are expected to change and bend to the will of the system, rather than any fault with the system that needs to be addressed.  

As a result of this, by the time our sons entered higher education they were already struggling and on the brink of breakdown.  But still, the show must go on and the emphasis remains on re-integration into the same destructive systems and particularly on joining the workforce in one way or another.  Indeed, much of the help from local autism services focusses on helping people into work.  But I can't even get my younger son out of his room (not advice on this first step) and, even if I could, would I want to force him back into the same structures that have almost destroyed him?      

Thanks for that, good find, autistic voices for once.

Really good that it explains main causes so that people can assess their own burnout, or burnout of others - what they might be burning out from.  But the suggested recovery methods are what matters, things autistic people have tried.  Its fatigue, without anything changing it will persist, but make positive adjustments and it might start to fade. 

I just did a quick literature search on autistic burnout (I am a scientist so this is what I do when in crisis mode...) and I found some interesting recent papers: 

This paper tries to give a more detailed definitition of autistic burnout and how it differs from depression and other forms of burnout. They interviewed autistic people that had gone through burnout: 

https://journals.sagepub.com/doi/abs/10.1177/13623613211019858

I tried to attach the PDF version of it (as it isn't open access) but not sure if I can attach PDFs/ files on this forum? If you are interested I will see if I can somehow get a copy of the whole article to you. 

This part from the discussion might also be of interest:

"Our results highlight that routine treatments for depression, such as cognitive behaviour therapy and behavioural activation, may be contra-indicated within autistic burnout, even though these conditions may co-exist. Our experts described the need for withdrawal and downtime for recovery, somewhat antithetic to behavioural activation. With cognitive overload being described as a key precursor of autistic burnout, cognitive-focused therapies could be counterproductive. There is a need, however, to ground these suggestions in experimental studies, and we believe there is a role for appropriate psychological support in recovery from autistic burnout. Autistic people daily face adversity in social interaction, as described in Milton’s (2012) double empathy problem, and underestimation of their self-awareness and ability to recognise the perspective of others as demonstrated by Heasman and Gillespie (2018). Overall, our results highlight the need to address social issues and sensory environments, to reduce stressors that can lead to autistic burnout or suicidal ideation for autistic adults."

And here is their suggested diagnostic criteria: 

In many ways the world isn’t safe - so it’s not so strange really to feel like that. As things are so difficult for your son I’m so glad that he does at least have the gaming community. Hopefully he’s enjoying that aspect of his life and is communicating with others sometimes through that. That’s something at least. 

Yes, it's quite a familiar feeling to me too.  It's not safe.  Plus expectations out there seem quite high to me.  Just for a basic job and a small income.  I think our home has been becoming a hermitage for some time now, especially since the time our son dropped out of college because he could no longer continue on the conventional path.  

When I was 17 (when the severe issues really emerged in our son) I only coped socially because the young lad who became my first boyfriend pursued me relentlessly and wasn't put off by my lack of speech and aloof manner.  This eased my transition into adulthood and I probably used him quite horribly.  

But our son doesn't have this.  And, yes, I think he's traumatised   The gaming community might be all there is for him, under the circumstances.  I wish I knew how to reach him.  

That sounds incredibly difficult for you both - I’m sorry. When you write ‘’I don’t feel that the world feels safe to him’ - that’s how I have always felt. My son sometimes says “I don’t think I was made for this world” - and I relate to that too, I’ve also sometimes felt tempted to withdraw (in many ways I have as I’ve worked from home for most of my adult life. 
I think a lot of autistic children are traumatised by their school experience too. My youngest has Selective Mutism which began when he started school. 
if your loved one likes computer games so much maybe he’s communicating with others online? As part of the gaming community? 

‘I’m trying to help myself’ seems to be a theme on here. A consequence of the paucity of good mental health services in the U.K. right now. Actually I think it’s also a result of a capitalist society that places making money and maintaining the system above the well being of it’s citizens - but that’s a whole other story!
I think often what autistic people need is to have all the pressure removed - but how many people can realistically  do that? Most have commitments or demands on them that are very hard to escape from - even temporarily. My mother-in-law recently died and I feel that ideally my husband would have a break from work to fully process that and grieve, and organise her affairs. But it’s just not possible. The more we force people to continue in situations they are unhappy with the more deeply our problems go and the longer it takes us to recover.  

Just playing computer games and living like a hermit.  I don't think that the world feels safe to him, which I can well understand.  He basically just wants to be left alone now, although when he was young he always seemed quite gregarious.  In fact, I believed he actually was but later, when he was around 16, he confided that he "always felt different inside".  Plus there was bullying, of which we weren't aware.  

Little to no communication.  He avoids us as much as possible, as if in fear.  If he can get away with clipped responses or, better still, nothing at all, he does.  Then he retreats asap.  After one sentence he's already halfway back upstairs, so I often don't speak, with the feeling that he feels safer to stay downstairs for longer that way.  

There are so many people struggling with their mental health at the moment and I wonder to what extent many are connected to Covid - either through having the infection or through other aspects of the pandemic (or possibly even the vaccine). There are so many ways that the pandemic has messed with people lives and their heads (and bodies of course). I’m also recovering from Covid and have wondered if my current severe levels of anxiety are partly due to having had Covid. It’s quite hard to separate all these things out - and in a way it perhaps doesn’t make sense to attempt to see them as separate issues because they do all connect in many ways. I just want to feel better and the strategies I’m using (that I’ve used in the past) don’t seem to be working very well at all. I found this Audiobook meditation thing on Apple Books last night called ‘Calm’  by someone called Linda Hall and even though I was a bit sceptical about it it did actually help me to relax and go to sleep. Not much does at the moment so it was a relief. She talks in an extremely slooooooow voice :) 

Thank you. It's been about 6 months now myself sInce covid. I know it varies between people. I wasn't hospitalised but it wiped me out and was quite scary. You usually know yourself a timeline when you get a cold or flu but this was unknown.

A few months before getting covid I was having fatigue due to low iron but that was mostly sorted altho I didn't feel I was back 100% before getting covid. It's hard to see what is the cause of the fatigue but all bloods and levels have come back ok this time.

It's difficult because this academic year I took on extra hours in a different department. They are supportive but it still gives me anxiety. I got covid just before we went back in September and I started the additional hours. The timing also coincides with lockdown ending.  I don't want to get on the wrong side of them being new there as they ve done a lot for me but equally I don't know where i stand a lot of the time and i get conflicting information abut things. They are supportive but don't seem to understand I need clear instruction.

My usual mgr is also very supportive and more direct with communication. I had my workload and hours reduced from when I went off with anxiety a few years ago so I can't really shave much more off.

A couple of weeks ago the fatigue lifted but its now come back. I had quite a busy weekend and coukd feel the band over my head descending late on Sunday. I have difficulty getting past how I feel in the moment. So past few weeks I've been feeling ok and that I didn't need a break. But it's come back. I sometimes have difficulty seeing the bigger picture.

I'm not saying this is autistic burnout but I feel the physical fatigue makes things more difficult to deal with. And I was just after some understanding from others :-)

I really hope you manage to find some more support. I actually also had long Covid as well and that was a very tough time for me (especially as I was trying to write up a Master thesis at the time and could not focus at all). What I found hardest to deal with is that noone could tell me how long it takes for people with long Covid to improve and indeed it was unclear if full recovery happened at all. I remember searching the internet, trying to find accounts of people that did recover from long Covid. If it makes you feel any better, I did actually improve a lot and I would say I probably fully recovered (hard to say if it was 100% back to 'normal' as that is impossible to judge and as a lot of other issues were going on)- I only started seeing noticable improvements after 6 months though. I don't know if this gives you some hope- I know this is only one anecdotal case of recovery from Long Covid ... 

Can you possibly take a break from work to give yourself some time to rest and regain some energy?