Autism Burnout

A video on Autism Burnout (fatigue) from the Pete Wharmby, a great autistic speaker and writer.

https://www.youtube.com/watch?v=JNDQ2glqHj8

All the internal and external factors autistic people face can take its toll over time - mentally worn down from masking, enduring difficult situations, anxiety about the present/future, trauma from the past, and then non-autism things that life throws at you.  It is good to be aware of it, even if its not happen to you know it might in the future.

It is not well researched or understood, so getting help for it is difficult, but like any fatigue its a good idea to be kind to yourself, mentally and physically.

If you aren't familiar with Pete then watch his other videos if you can.

Parents
  • 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. 

    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.   

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  • 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.   

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