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’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.  

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?      

My oldest only moved out as a result of mental illness, a stay in hospital, refusal on our part to have her back, resulting in a move to supported living. I can't say I want the same process for my son. He was labelled a school refuser and we are still dealing with the consequences.

Yes - I wish I’d taken my youngest out of school too. All those years at school with Selective Mutism - it was too much to ask of him. I feel so much guilt about it. We were always fighting for support and hoping things would get better but we could hardly ever get him the support he needed. It just went on for years and years - we were stuck in this toxic battle with the school and the LA trying to get help for him. Writing endless letters and emails - getting nowhere most of the time. 
I love your idea of self-employment from home for all of you - great idea. I’ve always worked from home (as an artist) and it’s worked very well. 

Yes, I think we're encouraged to keep on sending them in, as a matter of course and without any real consideration of the effects.  I wish I could go back and pull mine out of school.  

And choosing a job requires a great deal of care and thought.  Again, we're encouraged to believe that any job is better than none.  If you're on benefits you don't get to be choosy either.  But this system is, at least for my family, the equivalent of patching us up and then sending us back into the lions' den.  We just keep on accruing more and more damage.   

Neither of my sons work but I'm now thinking more along the lines of a family business or the possibility of doing something online.  Even a few small streams of income make a difference.  I can't see them moving out and buying their own home though - the logistics of it and the expense both rule this out, unfortunately.  So I'll be looking at moving into somewhere bigger with a view to them working from home as soon as this becomes affordable.  I feel as though we're trying to buy back our autonomy!

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.

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.

My oldest only moved out as a result of mental illness, a stay in hospital, refusal on our part to have her back, resulting in a move to supported living. I can't say I want the same process for my son. He was labelled a school refuser and we are still dealing with the consequences.

Yes - I wish I’d taken my youngest out of school too. All those years at school with Selective Mutism - it was too much to ask of him. I feel so much guilt about it. We were always fighting for support and hoping things would get better but we could hardly ever get him the support he needed. It just went on for years and years - we were stuck in this toxic battle with the school and the LA trying to get help for him. Writing endless letters and emails - getting nowhere most of the time. 
I love your idea of self-employment from home for all of you - great idea. I’ve always worked from home (as an artist) and it’s worked very well. 

Yes, I think we're encouraged to keep on sending them in, as a matter of course and without any real consideration of the effects.  I wish I could go back and pull mine out of school.  

And choosing a job requires a great deal of care and thought.  Again, we're encouraged to believe that any job is better than none.  If you're on benefits you don't get to be choosy either.  But this system is, at least for my family, the equivalent of patching us up and then sending us back into the lions' den.  We just keep on accruing more and more damage.   

Neither of my sons work but I'm now thinking more along the lines of a family business or the possibility of doing something online.  Even a few small streams of income make a difference.  I can't see them moving out and buying their own home though - the logistics of it and the expense both rule this out, unfortunately.  So I'll be looking at moving into somewhere bigger with a view to them working from home as soon as this becomes affordable.  I feel as though we're trying to buy back our autonomy!