Autism Burnout

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 so sorry that your family is struggling so much and I really hope that you find a way forward. 

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'm in a couple of local carers groups plus also in regular contact with the council carers support too.  They have nothing specific to autism.  Their counselling service has nobody with specific autism training and their counsellors will probably be people like myself (or should I say my former self), because I trained in this and several members of my class volunteered for them.  I know that they have no answers, although I do know that they can offer a safe space to talk and explore issues.  I've explored these to death, I think, although there's always the possibility that someone somewhere will be able to shed new light on this.  If they had a service offering robust advice and guidance, I'd be up for that.  And, in fact, I've just fired off an email asking them for just that.  Let's see what they come up with.  It'd better not be a spa day out or a craft session.  :(

To be honest, and not to decry options that may well be valuable for many, I truly believe that the only way out of this prison is to resolve some of my sons' issues.  My own issues are purely with our situation and their lack of options, as compared to those of their peer group.  I have various health conditions and cannot go on forever.  Have I simply brought two very vulnerable people into a hostile world?  I can't go to my grave fearing this and yet I might have to.  

Sorry if this comes across as negative.  I'm sure I used to feel very positive about life but, having thought I'd escaped the issues from my childhood, I feel as though this is almost a visitation upon us.  History repeating itself.  My sons are suffering in the same ways as my dad did.  I need it to stop.   

Can I ask - does your loved one have anything at all that he still really connects with? Any subject he can still have a genuine interest in? And also does he communicate at all how he feels, or what he wants? 

My son says that the thing of not feeling anything anymore is the worst he’s ever felt. He’s doing a bit better now and doesn’t feel numb - just massively anxious. 

I found it helpful too. I’m sorry you’re experiencing this too. We’re both exhausted by everything here - it feels like we’re clinging on to a raft in the middle of a very stormy sea most of the time. I am so needing rest and peace but I’ve so many stressful things going on in my life at the moment. We are just hoping that things get easier soon. 

There should be carers support in your council area, have you tried them?  For support for you more than anything, but might help in other ways.

That's why we are horribly stuck.  

Unfortunately, that is the way.  If he was less withdrawn and asked, not sure what he would be offered anyway, because there isn't mainstream adult autism support outside social services care.

Indeed, and like other families trying to cope with these kinds of situations, we often feel completely unable to cope, emotionally, practically and financially.  But yes, it also feels as though our son has had 10 years of his young life stolen by this.  My dad lost a lot of years too and only eventually improved with retirement (no work-related stress) and prospect of grandchildren (a positive purpose for a lovely, gentle family man.  

I'm just aghast at the depth to which these things can run.  And all without any external help because it's either unavailable or engagement is well nigh asking the impossible.  It runs along the lines of:-

Q: How can we get help for our adult son who refuses to engage?  

A:. Well first he needs to engage and ask for help himself!

Ain't never gonna happen.  :(

It must be incredibly hard for you - I’m sorry. I’m presuming it’s your son? You’re obviously trying to do everything you can - it must take so much out of you emotionally and psychologically. I hope that you have support for you too? Because trying to help someone who is in your loved one’s situation can be very demanding and draining - especially when it’s gone on for so long. Most of all though I keep thinking about how hard it must be for them. 

Yes, I do find it heartbreaking at times, then am forced to soldier on.  I wish I could find services that could guide and support families. 

But anyway, here's a post of mine from a while ago, just in case there are any other resources in there that you might find helpful.

community.autism.org.uk/.../useful-resources-webinars-etc-on-burnout-extreme-withdrawal-and-hygiene-issues-in-adults

I hadn’t heard of those two people - thank you for sharing - I will look into that. The person you are supporting: I like the things you list that you are doing to help them. That seems exactly the right thing to be doing (it’s just what I need too to be honest!). 
my son is struggling with autistic burnout and I think I am too. The tiniest little thing makes me feel totally overwhelmed and I panic very easily at the moment. It’s so hard to live like this - it isn’t really living to be honest.
It must be very difficult to support someone who has retreated to the extent that your loved one has. I’m lucky that my son and I communicate a lot. My heart goes out to you both. Your loved one  must be really suffering - which is heartbreaking. Sending love and solidarity - and I hope things improve soon. x 

Yes, I'm sort of on a quest for answers.  And, in the meantime, my loved one's life seems on hold.  It's not just that he barely speaks to us, he has no other contacts at all.  No courses, jobs, volunteering, friends, anything.  Apparently it was OK for MH services to discharge him on the basis that he has no mental illness, just "Asperger's", but nobody could signpost us elsewhere for help.

Started around age 16/17.  Ten years have passed and he'll not be getting those back.  We're holding a steady state here and hoping this will help but it really feels as though we're preventing things from getting worse, but not actually able to help them get better.  At a total loss and never expected anything like this in life.  :(

And we feel devastated.  Perhaps Peter is right about some people never recovering or coming back from it.  I hope not but perhaps it's true.  In the 70s and after a bad period at work, my dad slipped into this state for most of my teens.  Nobody helped and in fact many blamed us for his strange incapacity and basically not knowing what on earth to do.  I'm not sure anything has changed.   

Its difficult, I wish I had the answers.

However, if its any consolation, I was withdrawn and didn't communicate well with my parents in late teens, especially when working as that raised my stress levels.  If asked how I was I would just say fine/OK.  I wouldn't have been able to describe it all anyway, maybe bits that wouldn't have helped build enough of the picture.

Reducing triggers and being open and supportive will help them, it may just need time for them to open up more.

I'm not on Twitter but have joined several FB groups, incl. being part of Asperger Experts for several years.  I also really appreciate the work of Kieran Rose (and I went to see him as he lives just north of us) and Jodie Smitten.  However, much of the material is individual accounts based on individual experiences.  Jodie has a course on burnout and, although it's intended for children and teens, much of the material is more generally applicable and quite helpful (though not for our more intractable situation).

Anyway, you'll see I've posted about burnout elsewhere in these forums with some of the resources I've found.  What I'm lacking is more on how to help an adult who won't engage with services, nor look through these materials himself.  What I'm doing is:

- maintaining a calm, nurturing household
- hoping that this provides the low arousal environment needed
- no/low demands 
- making ourselves available to listen open-endedly as needed
- generally adopting a person-centred approach

Even with that, the problem persists, and has done for years.  Being at my wit's end just doesn't really describe it any more because that's now just our way of living.  It's chronic and severe, whereas in many of the videos I see, it's episodic and more easily overcome (NB not to say it's easy as such, but it doesn't last for a decade!).  What I'm finding is that many of the videos are done by quite articulate and well presented people and I can't transfer very much of it to help a loved one who has retreated from the world almost completely, has very poor to non existent hygiene and will barely speak to us (or communicate via other available means).       

That's a shame, have you tried Twitter or other social media where parents/carers discuss things?

I like this video. My son is experiencing autism burnout at the moment (and I think I possibly am too). We’ve always just about managed life but in the past few months we’ve both sort of crashed. Partly due to the pandemic - but also other very difficult life events and situations have taken their toll. We’ve been so massively stressed for so long that we’re frankly on the edge of collapse. This feels physical as well a psychological. Very very hard.

I like the guy in the video - his other videos look good too. Thanks for sharing :) 

A subject I'm always rearching for more information on.  In our family one of the issues is that any articles are usually framed inthe first person, whereas we need help from the third person perspective - i.e. a carer or parent seeking to support a loved one through it. 

I'm really not finding much.  :(