Can someone explain autistic burn out to me and how it differs from normal burn out?

[BurnoutHereICome]

My sibling is autistic, doesn’t work never has, lives with my parent so doesn’t pay bills, and never goes anywhere or does anything.

They’re constantly complaining of burn out, saying it’s the autism and is worse for them than my burnout. They spent weeks in bed with burnout, don’t even change their clothes or bedding, just sleep most of the time.

They’re saying their burnout is worse than mine and my parent agrees, because with mine I’m functional because I have to be.

I’m just back to work after having 2 months off with stress. I’m a single parent to a disabled 9 year old – said child can’t walk and doesn’t have much use of their legs so I do everything, I also work full time and have to repeatedly take said child to appointments. DC wakes between 4 and 8 times a night and needs turning and resettling so I burnt out running on little sleep. ExH has 1 night a month. I get no help from extended family due to my sibling having it so much worse.

I’m trying to understand how my ASD sibling burns out to a greater extent than me? I’m not judging honestly, I just don’t understand.

Does it matter? It's not a competition some people tire easily, some don't, some are just lazy. I've never heard the term burn out used in such a matter of fact way as if it's a regular occurrence.

Nobody has been both of you so no one can say who is more burnt out.

You are very understandably exhausted and burnt out. Is your parent or anyone else able to help you out occasionally?

I can totally understand that is would be totally frustrating to have a sibling being waited on and supported by a parent when you are really struggling.

Does it matter? Just believe her when she's telling you she's burnt out. Don't be envious of someone not being able to get up and wash,it's not a competition as a PP says.

@saveforthat Not for me but my sibling it is, sometimes just leaving their room to use the bathroom causes burnout and they literally stay in bed for weeks (and I mean 6 or 7 weeks) after it. It's happened 4 times since January started. When it happens they go to the toilet in a bucket and my parent empties it once a day.

Sibling already doesn't leave the house at all, hasn't left the house since 2020, won't even go in the garden, doesn't co

I'm trying to understand, because I can't imagine living like that and what it's like. I'm not in a competition with them, I just want to understand.

I tried everything to prevent burnout, but it happened.

You should ask this on the Neurodiverse Mumsnetters board.

@ChimneyPot No help at all, parent has to support my sibling, ExH won't have more contact with DC that he does and there's no-one else. My colleagues have their own children or don't want to help and I don't have time for friends when I'm not working.

My sons autistic and he comes straight home from school every day and collapses in a heap for an hour. He can’t do school clubs or play dates. He gets exhausted after; holidays, time with family, and basically anything that’s socially demanding or out of routine. But he’s 11 so I can manage him well.

I can’t pass comment on your brother.

Your life sounds really difficult though so forget about him and try and get some support in place for yourself ❤️

@HorsePlatitudes There is no support though, ExH won't have DC more and his family won't support me. Parent is supporting my sibling so there's no-one.

And I think thats my worry. What happens when my parents not here? Do I have to support sibling as well as my own DC? How??

What support do your parents and sibling get from outside agencies?

@LeonardCohensRaincoat None sibling refuses it and is seen as being able to make their own decisions, so none at all. Adult SS closed the case when they saw sibling could make own decisions.

I wonder if there are any charities, then?

this used to be good for respite

https://revitalise.org.uk/about-us/our-history/

https://www.autisticparentsuk.org/

I’m thinking that this org. might advise your parents on strategies they can use so that they don’t get burnout and recognise that they are missing out on you and your child.

@LeonardCohensRaincoat The issue is my sibling hasn't left the house since February 2020.

They went to the corner shop and spent 8 weeks in bed after it, so haven't been out since.

They often don't even go downstairs. They basically live upstairs between their room and the bathroom, but often they don't get out of bed at all.

There was a really good 3 part series on the BBC I think everyone should take a look to help them understand some of the difficulties and varieties faced by people on the spectrum.

I don’t think comparisons are useful here. It sounds like you and your sibling both face different challenges.

Concentrate on you and your child. No, you are not obligated to support your sibling when your parents aren’t here. You could have that conversation with them at some point to see what they need to put in place if you want to and then leave them to it.

OP
Your sibling refuses support from SS, so you shouldn't be guilted into being his / her carer when your parent is gone.

Your first responsibility is to your child.

I do wonder how much of your sibling's problem is burn out and how much of it is lack of muscle tone as they don't leave the bed for weeks at a time. If you have no muscles everything is going to be so much harder to do.

There was a recent thread on ASC and masking and how it impacts on a persistent, daily basis. It was illuminating to hear from posters with lived experience. As a carer, I can see how exhausting it must be to be my child but I only know bone-deep exhaustion after weeks on the go with no respite (as you describe) whereas they often need to decompress after a day.
I have had depression - it is disabling and destabilising. Duvet-mode/not washing/eating/feeling empty etc is awful.

I don't have answers for you. I have no support myself so the buck stops with me. You get on with it because you have to. The sleep deprivation is a killer for you. Not sure whether you can do siestas at weekends or after work (I work part-time) while your child watches a film, but the body does keep the score. Many of us have no help from family regardless of need. It is hard not to resent that sometimes.

I do know I don't expect my other children to ever take care of their sibling and my job is to make sure they become independent. My child refused to leave the house for 18 months when very young - everything was a battle. I could envisage them doing this later in life if I don't force them out the door and into a routine but there's the rub - how to physically force/strong arm a male-bodied, strong adult male into doing anything or going anywhere. I am not judging your parents as I don't know how I will deal with it when the time comes but the situation isn't tenable.

It sounds like your sibling has more going on than just autistic burnout, it sounds like there are probably mental health issues such as depression or even agoraphobia going on if your sibling is literally staying in bed for weeks and hasn’t left the house in 3 years. Mental health issues are very common for people with autism but are often under diagnosed as issues will just be put down to the autism and not taken seriously in their own right.

I’m autistic, I’ve been burnt out before, I’ve been depressed, I’ve been signed off sick with stress. I don’t believe that these situations were any worse for me than they would b a neurotypical person; if your burnt out your’re burnt out. If your stressed, you’re stressed. The reasons for getting to the point of burnt out may be different if your neurodiverse to neurotypical, the threshold for getting burnt out may be different, the recurrence rate may be different and the treatment may be different, but once a person is so burnt out or depressed or stressed etc thy can no longer function it doesn’t really matter with it’s due to a neurodivergence, a chronic mental health condition or due to an intense amount of stress, if somebody is so unable to function that they can’t can get out of bed to use the toilet that is serious and I wouldn’t think somebody who couldn’t get out of bed because they had autistic burnt out was in a worse place than somebody who couldn’t get out of bed following a bereavement or due to a mental health condition. Anybody who cannot function to that extent needs and deserves outsider help because that is no way to liv, neurodivergent or not, and I think it is sad that your sibling is accepting this as normal or to be expected due to their autism. It is absolutely not the case that most autistic people suffer from ‘burn out’ to this degree and I think that the autism is probably stopping everybody around your sibling from realising this is actually a sign of very poor mental health which needs help and not something that should just be shrugged off as normal with autism, because it absolutely is not.

Your sibling probably has depression as a result of burnout. The symptoms you are describing are hallmarks of depression. They're probably all attributing it to burnout without thinking enough about it.

Being autistic can be very miserable and stressful. Everything involves masses of extra cognitive effort that NTs don't have to make in their everyday lives. Many autistic people have undiagnosed ADHD/ADD which frequently leads to depression as well as your brain is constantly letting you down and you don't feel in charge of it at all.

Your sibling needs some antidepressants or a change of antidepressant if they're already on one. They also have to want to improve.

@stbrandonsboat Adult SS suggested going to the GP and sibling said no they can't help and refused to go.

It worries me as my parent is in their 70s so what happens when they're gone? As I know they're expecting me to step up, I just don't see how I can.

I think your sibling has mental health issues as well as autism. I’m not medically trained but I would hazard a guess at severe anxiety disorder or depression. If you suddenly found yourself in charge of your siblings well-being you would probably have to contact your GP in the first instance and if your sibling refused to engage it would have to be escalated to mental health team / crisis team and they would have to do an assessment and intervene.

(I say that as the parent of a child with fairly severe autism and mental health issues).

I also have autism myself and suffer burnouts but I can’t lock myself away for years on end. I may shut down for a few hours in order to “recharge” and I avoid anything social but I need to survive and I need to function so I force myself to do things. I do think it depends on someone’s level of functioning though. My son for example attends complex needs school and will always need full time care.

You don't have to step up, someone else will need to do it. You're not legally obliged to assume care for them. They would be advised to accept treatment as they'd feel better, but they've obviously become accustomed to existing in a 'sick role' and may be resistant to stepping out of this as it excuses them from assuming responsibility for themselves and their mental state.

You have enough to do with your child who has demanding needs. Stop worrying about your sibling and parent. You do not have the flexibility to take on their jobs as well as your own. Tell your parent they need to start the process of finding a group home or supportive living situation for sibling as you will not be able to take over managing their care. It is kindest to be clear and firm.