Autism Burnout

I'm really struggling.  I'm heading to the place I was in a few years ago. I had to take time off work. I don't know if it's the 'spergers, anxiety or post viral fatigue from covid. I think it's a mixture. The fatigue is making everything worse. I cant focus and its all consuming. I can't reduce my workload anymore.

I've got a referral to the long covid clinic but I don't know if it's long covid or mental health and neither does the doctor. I've got a massive questionnaire to fill in.

My body is telling me to stop but I am not listening.  I keep powering through. I don't know where to turn. The local mental health place isn't helping, I'm on a generic online CBT programme. They're ringing me this week for a review. They didnt listen to me in the first instance and they talk too fast. I've referred myself to Acess for work but still waiting on that as applications are behind. I've contacted the Autism and ADHD centre (which has been recommended to me by the mental health team) to chase up the waiting list and was told that I'll get a letter when they get round to my name. They cant tell me when this will be, if it's next week or next month or in 6 months because "everything is in a mess". The place I had my private assessment haven't got any capacity at the moment.

I'm trying to help myself. My partner and i are trying to problem solve to hrlp reduce demands. I'm fed up of going round in circles.I find it difficult to ask for help or saying I'm not right (to friends or colleagues and to the professionals), and difficult to articulate what exactly is wrong and sometimes my point is lost.  I'm trying to seek help but not being able to get anywhere.

I feel like my body cannot carry on. It's telling me to stop.

I'm a fully grown adult with a professional job.

I am actually also suffering from burn-out at the moment. This is not the first time I am suffering from burnout (though I wasn't aware that was what it was last time), but it is definitely the worst and I am physically and mentally completely depleted. I worked extremely hard for the past 6 months (10-12 hours a day and sometimes more, plus usually 1 day on weekend at least) as I love my work but also as I got overloaded with work and spent most of my time helping out others (unable to say no). The worst is that I also got exploited and ended up not being paid and as a result in financial difficulties. I also ended up severely underweight (unintentionally) as I suffer from issues around food/eating (for over 6 years now)- I got hyperfocused on my research/work and ended up not dealing with the issue and before I knew it I was eating the same handful of foods in the same routine. 

Luckily my GP gave me sick leave and I have been off work for a month now and I am starting to feel a bit more energised. I am trying hard to address the eating issues but it is super exhausting (each food decision is like me planning and obsessing over one of my science experiments). However I am worried that I am living  in a "fairy world" - I don't mean that it is particularly nice (as I feel insanely stressed out at times), but I just haven't really been dealing with anything- I have tried to completely block the issue of work and what will happen in the future, out of my mind. I have also for the first time in ages, been almost completely unproductive, which I think is good for me but it feels strange. I am just concerned that I am withdrawing too much from real life. I feel like I need it at this point and the idea of having to go back to work and decide on the future (I think I need to find a new place to live and do my PhD as I have been exploited and lost trust) fills me with panick. I just don't feel ready to go back and to deal with life (though I don't think I have ever really coped with adult life). I am not sure yet if I can somehow organise a longer time away from work - trying to figure it all out now- I am just unsure if I am doing the right thing in letting myself be unproductive and in allowing myself to withdraw and not deal with things for a while... . 

I have also been seeing a mental health team here- I am not yet diagnosed with autism though I strongly suspect that I am autistic. The mental health team agrees that there is a strong possibility but they have told me repeatedly that they don't think it matters for my therapy whether I am indeed autistic or not... - This really concerns me as I think it does matter in terms of therapy? I have somewhat lost trust in therapists and mental health professionals over the years- I know that I do need help though, but it is hard to trust when they seem so inexperienced with these issues. I also often feel like they misunderstand and I am not sure how I can communicate more clearly... :( 

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 hope you are feeling more rested and well these days

You’ve been through so much - all respect to you for coming through these things and learning so much from your experiences. Recently I’ve felt totally wrapped up in my own thoughts and anxiety and coming on here has made me realise that so many of us have been through such tough times. I feel less alone - thank you. X 

I'd be shouting stop constantly :-D I do make time for the things you mention. You say worry less.  It's easier said than done but it's a process I'm learning to retrain my brain.

One thing which really helped was learning our emotions come from our primitive brain.  So when my emotions are high, I can't rationally think. I have to wait for emotional brain to recede and rational brain to come back online before I can do anything. 

CBT can be difficult for autistic people, trying to work out what is rational or not might get in the way of thinking more healthily which is what will help most.  Thoughts do affect our feelings, good or bad, and feelings affect our thoughts - CBT is correct about that.  Be kind to yourself, worry less, don't let disturbing thoughts affect you as much, and so on.  Also, make time for mindfulness or peaceful periods in your day, it can help put a break on the unhealthy thoughts.

When unhealthy thoughts are flowing you can also shot "stop!" in your mind, or "enough now", things like that.

Probably too many people that have 'bumbled through therapies and found it difficult/unhelpful'... It is also damaging when you see everyone else improve, whilst you don't... I was inpatient once for 8 weeks and I did relate to some of the issues in the group therapy however it was so frustrating as I could tell that over the period I was there other people were improving, whilst I on the other hand was becoming increasingly depressed (and it is not just me who thought I was not improving- other patients also commented on this as did the staff...i think they were a bit frustrated with me). I just felt like the odd one out and also guilty for 'not trying hard enough' and I felt like there was something wrong with me. The staff then decided that the way to "fix" my lack of improvement was to tell me to "be more positive"... I tried... I left the inpatient clinic, a few months later I started an internship in a lab again (something that the therapists had also supported and which I really wanted to do) and essentially the same cycle that had landed me in trouble in the first place happened again because I had no idea... I got hyperfocused/obsessed with my work, lost a lot of weight and ended up in a bad shape- luckily the intership ended before total collapse and I moved back to Cambridge where I felt safer and at home...  

I understand that services are really stretched and the pandemic has meant there's so much more demand now. I think this is why I have been given the online CBT thing at the moment. I dont know if wellbeing or mindfulness is being taught in schools but it should be. Anything which helps chip away and helps foster a good mindset is worthwhile.

I didn't feel awkward in the group. I just felt different. LIke my worries or anxiety were different to other people's but that doesn't mean it's less or more valid. I just didn't feel I could relate to any of the stuff we talked about. This was before I had a diagnosis but I knew I was autistic. I wonder how many people don't get the treatment they need because they dont know they are on the spectrum but they just bumble through therapies finding it all difficult or irrelevant.

Sometimes I think it just amounts to gaslighting.  I was made to doubt myself and my (all too accurate) perceptions.  And group therapy isn't something that would easily allow for individually tailored therapy.  Plus many of us feel awkward in unfamiliar groups anyway so it takes all of the sessions just to adjust to this.   

It's good that you had another therapist to unpick some of this but really you shouldn't have had to. 

Unfortunately they seem more familiar with certain labels and apply them quite freely.  The assessment forms seem to encourage this.  For example, I was all too easily diagnosed with depression and anxiety via the PHQ09 and GAD07 forms.  But they never thought to use the AQ10 form or expand their questions to check whether I was autistic.  And they don't seem to know about burnout - do they even have a questionnaire for it?  

Anyway, once I was eventually diagnosed as autistic, I saw it all through a different lens.  Of course I felt anxious and depressed!  Not being identified meant that I couldn't ask for accommodations or understand myself and our family identity.  And I got labelled as a poor team player, a non contributor to meetings and generally unproductive when it came to doing presentations instead.  If they'd actually understood that I was autistic from the start, much of this didn't need to happen.  The so-called depression and anxiety were a logical consequence to being misunderstood, criticised and marginalised and secondary to being an unidentified neurodivergent person whose needs weren't being met.   

This is one of the problems I had in generic group cbt therapy. I was made to feel like my thoughts were irrational. But they weren't,  to me, it was everybody else's thoughts which were irrational and why should I undermine myself in this way!? It was actually quite damaging. Fortunately the therapist in my one to one course of treatment recognised this and we worked through it. I also felt I couldn't relate to a lot of the generic stuffas I think a lot of my anxiety isn't worry, it's just having too much input going into my brain.

yes i agree that individualising therapy is key- i also often get the feeling that some doctors and therapists like to just put you in a box/ give you a fixed label/diagnosis and then treat you with the "solution" for that set label... I have actually also had quite damaging advice and therapy in the past in terms of my difficulties around eating and food... in part because I don't fit the typical label (but also because in my opinion a lot of eating disorder treatment and support needs to be revised). 

But then I guess medical professionals love labels and diagnoses (I mean I see the appeal...) - only today I saw a new psychiatrist ... and now I have been awarded 2 new diagnoses... (which I am not so sure fit...basically depression, though I think it is burnout as I have responded so positively to time off and just withdrawing from everything- I don't feel depressed at this point... much more energised). I can start a collection of diagnoses... 

It's good that you are able to work from home and thereby protect yourself. Really happy that you found a job that you like and that gives you autonomy. 

I actually also feel stressed if I do not have my autonomy and I really liked being able to work more from home during lockdown. I actually haven't had to deal with having to be in an environment with lots of people on a daily basis since I finished school- at university there wasn't that much contact time, especially not with lockdown. Even during my Master's when I was working on a research project, I only went into the lab with a clear purpose in mind and didn't have to spend time in an office (mainly due to covid). I've never actually managed to do focused desk work from anywhere but home my whole life - does anyone else experience this? I need to be at home in my safe space, away from distractions and with all my things to be able to work effectively. 

I am actually wondering whether being in a lab/office environment all day (10-12 hours or so per day) for the past months might have contributed to my burn-out (I started in a new lab). I don't think I was used to being around people, away from home and without my autonomy for such a long time per day. 

Part of me just wants to move on to a new lab, a new environment where I can have a fresh start- I am just worried that I am running away from my problems, failing to commit and that the same thing will just happen again in a new place....If I look for a new lab to do a PhD, I will for sure look out for things that will reduce the likelyhood of burnout... 

And yes, I believe that therapy really needs to be individualised in order to actually be therapeutic and restore some sense of becoming the people we're meant to be.  CBT, if adapted for our individual needs, might be helpful, but it needs to be built upon a trusting and respectful therapeutic relationship and also, I believe, be couched in a very person-centred approach.  

If the therapist isn't able to do this and, moreover, denies any need for adaptations, I wouldno longer trust them.  Basically it's not about imposing a counselling model but about meeting the person where they're at and working with issues and goals that come from them.  

Overall, and I'm not saying that there aren't elements which might prove helpful, I believe that short term, time-limited CBT/IAPT work with zero consideration of the person's needs and neurology is unlikely to be helpful, especially in the longer run, and might even be damaging.  

Example: A CBT psychologist with whom I had around 12 sessions relied very much on "dysfunctional thought records" and the like, in order to improve my ability to recognise "unhelpful thoughts" and challenge them.  I can see how this might have been helpful but some of my main issues were around coping at work (that nightmare accountancy job!) and feeling that I was being edged out and disapproved of my senior management.  So we worked on bolstering my self esteem and looking for replacement thoughts that might help, such as remembering  my qualifications and expertise, the occasions on which I'd made a positive contribution and the like.  The "therapy ended", seemingly on a good note.  Then, the next month, I got a letter, sent to me at home, rather than on my desk at work, inviting me to a meeting with various managers and someone from HR to "discuss" my role.  Apparently I could bring a union rep if I though this would be needed.  Of course, I was being made compulsorily redundant and all of my "unhelpful thoughts" had been spot on!  I felt as though my brain was being eaten by worms and went back to the GP, who wouldn't refer me for more "therapy"  on the basis that there was a risk of "dependency"!

Looking back, not referring me for more of the same might actually have been a positive.  I got more out of using the redundancy payment for some serious time out, spending time gardening, watching box sets and making some decent meals.  Spending time with my cats helped too!  This all made me seriously question what, for me, can be regarded as therapy and what won't help, even if it comes in the guise of therapy and might help the non autistic population.   Sorting this out for myself really  helped.  And it sounds as though yoga and breathwork can be helpful too.  I've certainly  used them, plus creative visualisation and tai chi/chi kung to excellent effect too. 

     

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.

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 hope you are feeling more rested and well these days

You’ve been through so much - all respect to you for coming through these things and learning so much from your experiences. Recently I’ve felt totally wrapped up in my own thoughts and anxiety and coming on here has made me realise that so many of us have been through such tough times. I feel less alone - thank you. X 

I'd be shouting stop constantly :-D I do make time for the things you mention. You say worry less.  It's easier said than done but it's a process I'm learning to retrain my brain.

One thing which really helped was learning our emotions come from our primitive brain.  So when my emotions are high, I can't rationally think. I have to wait for emotional brain to recede and rational brain to come back online before I can do anything. 

CBT can be difficult for autistic people, trying to work out what is rational or not might get in the way of thinking more healthily which is what will help most.  Thoughts do affect our feelings, good or bad, and feelings affect our thoughts - CBT is correct about that.  Be kind to yourself, worry less, don't let disturbing thoughts affect you as much, and so on.  Also, make time for mindfulness or peaceful periods in your day, it can help put a break on the unhealthy thoughts.

When unhealthy thoughts are flowing you can also shot "stop!" in your mind, or "enough now", things like that.

Probably too many people that have 'bumbled through therapies and found it difficult/unhelpful'... It is also damaging when you see everyone else improve, whilst you don't... I was inpatient once for 8 weeks and I did relate to some of the issues in the group therapy however it was so frustrating as I could tell that over the period I was there other people were improving, whilst I on the other hand was becoming increasingly depressed (and it is not just me who thought I was not improving- other patients also commented on this as did the staff...i think they were a bit frustrated with me). I just felt like the odd one out and also guilty for 'not trying hard enough' and I felt like there was something wrong with me. The staff then decided that the way to "fix" my lack of improvement was to tell me to "be more positive"... I tried... I left the inpatient clinic, a few months later I started an internship in a lab again (something that the therapists had also supported and which I really wanted to do) and essentially the same cycle that had landed me in trouble in the first place happened again because I had no idea... I got hyperfocused/obsessed with my work, lost a lot of weight and ended up in a bad shape- luckily the intership ended before total collapse and I moved back to Cambridge where I felt safer and at home...  

I understand that services are really stretched and the pandemic has meant there's so much more demand now. I think this is why I have been given the online CBT thing at the moment. I dont know if wellbeing or mindfulness is being taught in schools but it should be. Anything which helps chip away and helps foster a good mindset is worthwhile.

I didn't feel awkward in the group. I just felt different. LIke my worries or anxiety were different to other people's but that doesn't mean it's less or more valid. I just didn't feel I could relate to any of the stuff we talked about. This was before I had a diagnosis but I knew I was autistic. I wonder how many people don't get the treatment they need because they dont know they are on the spectrum but they just bumble through therapies finding it all difficult or irrelevant.

Sometimes I think it just amounts to gaslighting.  I was made to doubt myself and my (all too accurate) perceptions.  And group therapy isn't something that would easily allow for individually tailored therapy.  Plus many of us feel awkward in unfamiliar groups anyway so it takes all of the sessions just to adjust to this.   

It's good that you had another therapist to unpick some of this but really you shouldn't have had to. 

Unfortunately they seem more familiar with certain labels and apply them quite freely.  The assessment forms seem to encourage this.  For example, I was all too easily diagnosed with depression and anxiety via the PHQ09 and GAD07 forms.  But they never thought to use the AQ10 form or expand their questions to check whether I was autistic.  And they don't seem to know about burnout - do they even have a questionnaire for it?  

Anyway, once I was eventually diagnosed as autistic, I saw it all through a different lens.  Of course I felt anxious and depressed!  Not being identified meant that I couldn't ask for accommodations or understand myself and our family identity.  And I got labelled as a poor team player, a non contributor to meetings and generally unproductive when it came to doing presentations instead.  If they'd actually understood that I was autistic from the start, much of this didn't need to happen.  The so-called depression and anxiety were a logical consequence to being misunderstood, criticised and marginalised and secondary to being an unidentified neurodivergent person whose needs weren't being met.   

This is one of the problems I had in generic group cbt therapy. I was made to feel like my thoughts were irrational. But they weren't,  to me, it was everybody else's thoughts which were irrational and why should I undermine myself in this way!? It was actually quite damaging. Fortunately the therapist in my one to one course of treatment recognised this and we worked through it. I also felt I couldn't relate to a lot of the generic stuffas I think a lot of my anxiety isn't worry, it's just having too much input going into my brain.

yes i agree that individualising therapy is key- i also often get the feeling that some doctors and therapists like to just put you in a box/ give you a fixed label/diagnosis and then treat you with the "solution" for that set label... I have actually also had quite damaging advice and therapy in the past in terms of my difficulties around eating and food... in part because I don't fit the typical label (but also because in my opinion a lot of eating disorder treatment and support needs to be revised). 

But then I guess medical professionals love labels and diagnoses (I mean I see the appeal...) - only today I saw a new psychiatrist ... and now I have been awarded 2 new diagnoses... (which I am not so sure fit...basically depression, though I think it is burnout as I have responded so positively to time off and just withdrawing from everything- I don't feel depressed at this point... much more energised). I can start a collection of diagnoses... 

And yes, I believe that therapy really needs to be individualised in order to actually be therapeutic and restore some sense of becoming the people we're meant to be.  CBT, if adapted for our individual needs, might be helpful, but it needs to be built upon a trusting and respectful therapeutic relationship and also, I believe, be couched in a very person-centred approach.  

If the therapist isn't able to do this and, moreover, denies any need for adaptations, I wouldno longer trust them.  Basically it's not about imposing a counselling model but about meeting the person where they're at and working with issues and goals that come from them.  

Overall, and I'm not saying that there aren't elements which might prove helpful, I believe that short term, time-limited CBT/IAPT work with zero consideration of the person's needs and neurology is unlikely to be helpful, especially in the longer run, and might even be damaging.  

Example: A CBT psychologist with whom I had around 12 sessions relied very much on "dysfunctional thought records" and the like, in order to improve my ability to recognise "unhelpful thoughts" and challenge them.  I can see how this might have been helpful but some of my main issues were around coping at work (that nightmare accountancy job!) and feeling that I was being edged out and disapproved of my senior management.  So we worked on bolstering my self esteem and looking for replacement thoughts that might help, such as remembering  my qualifications and expertise, the occasions on which I'd made a positive contribution and the like.  The "therapy ended", seemingly on a good note.  Then, the next month, I got a letter, sent to me at home, rather than on my desk at work, inviting me to a meeting with various managers and someone from HR to "discuss" my role.  Apparently I could bring a union rep if I though this would be needed.  Of course, I was being made compulsorily redundant and all of my "unhelpful thoughts" had been spot on!  I felt as though my brain was being eaten by worms and went back to the GP, who wouldn't refer me for more "therapy"  on the basis that there was a risk of "dependency"!

Looking back, not referring me for more of the same might actually have been a positive.  I got more out of using the redundancy payment for some serious time out, spending time gardening, watching box sets and making some decent meals.  Spending time with my cats helped too!  This all made me seriously question what, for me, can be regarded as therapy and what won't help, even if it comes in the guise of therapy and might help the non autistic population.   Sorting this out for myself really  helped.  And it sounds as though yoga and breathwork can be helpful too.  I've certainly  used them, plus creative visualisation and tai chi/chi kung to excellent effect too.