Autism Burnout

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.  :(   

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

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).       

Well, I hear lots of swearing going on, which actually is better than nothing because it flies in the face of any suggestion of "flat affect"  and at least indicates some level of engagement.  It's also entirely on his terms which probably makes it feel a lot safer than the world out there.  

In many ways the world isn’t safe - so it’s not so strange really to feel like that. As things are so difficult for your son I’m so glad that he does at least have the gaming community. Hopefully he’s enjoying that aspect of his life and is communicating with others sometimes through that. That’s something at least. 

Yes, it's quite a familiar feeling to me too.  It's not safe.  Plus expectations out there seem quite high to me.  Just for a basic job and a small income.  I think our home has been becoming a hermitage for some time now, especially since the time our son dropped out of college because he could no longer continue on the conventional path.  

When I was 17 (when the severe issues really emerged in our son) I only coped socially because the young lad who became my first boyfriend pursued me relentlessly and wasn't put off by my lack of speech and aloof manner.  This eased my transition into adulthood and I probably used him quite horribly.  

But our son doesn't have this.  And, yes, I think he's traumatised   The gaming community might be all there is for him, under the circumstances.  I wish I knew how to reach him.  

That sounds incredibly difficult for you both - I’m sorry. When you write ‘’I don’t feel that the world feels safe to him’ - that’s how I have always felt. My son sometimes says “I don’t think I was made for this world” - and I relate to that too, I’ve also sometimes felt tempted to withdraw (in many ways I have as I’ve worked from home for most of my adult life. 
I think a lot of autistic children are traumatised by their school experience too. My youngest has Selective Mutism which began when he started school. 
if your loved one likes computer games so much maybe he’s communicating with others online? As part of the gaming community? 

Just playing computer games and living like a hermit.  I don't think that the world feels safe to him, which I can well understand.  He basically just wants to be left alone now, although when he was young he always seemed quite gregarious.  In fact, I believed he actually was but later, when he was around 16, he confided that he "always felt different inside".  Plus there was bullying, of which we weren't aware.  

Little to no communication.  He avoids us as much as possible, as if in fear.  If he can get away with clipped responses or, better still, nothing at all, he does.  Then he retreats asap.  After one sentence he's already halfway back upstairs, so I often don't speak, with the feeling that he feels safer to stay downstairs for longer that way.  

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

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? 

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.

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.

Well, I hear lots of swearing going on, which actually is better than nothing because it flies in the face of any suggestion of "flat affect"  and at least indicates some level of engagement.  It's also entirely on his terms which probably makes it feel a lot safer than the world out there.  

In many ways the world isn’t safe - so it’s not so strange really to feel like that. As things are so difficult for your son I’m so glad that he does at least have the gaming community. Hopefully he’s enjoying that aspect of his life and is communicating with others sometimes through that. That’s something at least. 

Yes, it's quite a familiar feeling to me too.  It's not safe.  Plus expectations out there seem quite high to me.  Just for a basic job and a small income.  I think our home has been becoming a hermitage for some time now, especially since the time our son dropped out of college because he could no longer continue on the conventional path.  

When I was 17 (when the severe issues really emerged in our son) I only coped socially because the young lad who became my first boyfriend pursued me relentlessly and wasn't put off by my lack of speech and aloof manner.  This eased my transition into adulthood and I probably used him quite horribly.  

But our son doesn't have this.  And, yes, I think he's traumatised   The gaming community might be all there is for him, under the circumstances.  I wish I knew how to reach him.  

That sounds incredibly difficult for you both - I’m sorry. When you write ‘’I don’t feel that the world feels safe to him’ - that’s how I have always felt. My son sometimes says “I don’t think I was made for this world” - and I relate to that too, I’ve also sometimes felt tempted to withdraw (in many ways I have as I’ve worked from home for most of my adult life. 
I think a lot of autistic children are traumatised by their school experience too. My youngest has Selective Mutism which began when he started school. 
if your loved one likes computer games so much maybe he’s communicating with others online? As part of the gaming community? 

Just playing computer games and living like a hermit.  I don't think that the world feels safe to him, which I can well understand.  He basically just wants to be left alone now, although when he was young he always seemed quite gregarious.  In fact, I believed he actually was but later, when he was around 16, he confided that he "always felt different inside".  Plus there was bullying, of which we weren't aware.  

Little to no communication.  He avoids us as much as possible, as if in fear.  If he can get away with clipped responses or, better still, nothing at all, he does.  Then he retreats asap.  After one sentence he's already halfway back upstairs, so I often don't speak, with the feeling that he feels safer to stay downstairs for longer that way.  

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? 

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.