Academic Paper on Autistic Burnout

That’s quite cool.

I like Neurodivergent Rebel but ideally need further advice and guidance for supporting young adults. 

Ah, yes, I've had a more thorough look through and I think I'm struggling because the resources out there are for parents to under 18s, with lots of references to schools and education plans to help, and what I can find on burnout in adults is in the first person, rather than from the perspective of the parent/carer. 

Plus I have Amitta Shah's book on catatonia and most of the descriptions seem to overlap quite heavily with burnout, although she doesn't differentiate those terms, and she keeps referring to mental health/NHS teams giving support with catatonia, which I simply can't find.  The fact that i'm blocked from accessing help from local mental health services with this because here we have young adults who have been deemed to have capacity but then use that capacity to avoid the world then adds to the problem.  As does the fact that, when they would engage, services made matters worse because they couldn't recognise autism or offer autism-friendly support.  Even now our local services are simply giving their staff a half day's training on autism!  So services won't or can't help, merely offering to step in as and when the young adult requests it and will engage, which sounds reasonable but which doesn't take account of the fact that, like my dad, they may well never do this. 

In some ways I can see the logic and I wouldn't want to unreasonably take away someone's autonomy or cross boundaries when it comes to confidentiality, but as a family we are still in a horrendous position having to cope, emotionally, practically and financially (I add finances as an issue because I can't access benefits on their behalf but I still feel duty bound to support them so that their mental health doesn't deteriorate still further, which it certainly would if they had to jump through the various DWP hoops that would ineveitably be placed in their way).         

Are there any accounts out there of families who've helped their young adults out of catatonia/chronic burnout/hikikomori or similar?  Although we probably aren't alone with this, it actually feels as though we are.  :(

I see that one of the References was the website of Neurodivergent Rebel. She liked some of my Blog Posts.

Small World.

Many thanks.  I've watched quite a few articles and videos on the subject and even went to see Kieran Rose, given that he lives just a couple of miles from me.  I'll have look through these though as something might leap out this time around.

I'm basically looking for advice and guidance from the third person perspective rather than first person accounts, and for adults rather than children.  We really need to know how to support someone in deep, chronic burnout (or catatonia, or shutdown) which last for years.  Yes, years.  

During my early teenage years I lost my dad to this for around 10 years.  A big gap in our lives that, although he eventually recovered to a degree, we never got back.  And now I'm devastated to find our sons going through similar.

So yes, we are very person-centred, low-no demand and empathic in our approach.  And we try to keep the environment here calm and low arousal.  But still the situation continues and I wouldn't know where to seek any further support.  Kieran was very generous with his time but, of course, is a dad to younger children and, although he could give some general guidance, he really didn't know what our chances of a recovery were.  It's probably not knowable.  And I messaged Jodie in some detail but got no response, possibly because my query was about young, autonomous adults rather than under 18s in my care.  

I feel devastated.  Perhaps, knowing what I now know, I shouldn't have become a parent.  My view was optimistic and hopeful and I thought more about future graduations and grandchildren than possible disability and distress.  Unrealistic, perhaps, but watching others close to me going through these positive life experiences, I'm finding it hard not to feel devastated, both for my sons and for myself.  Too many doors are seemingly closed to us, and for reasons I don't fully understand.  :(

Jenny Butterfly said:

Likewise Kieran Rose, Amy Pearson and, for autistic children and teens, Jodie Smitten.  

These autistic people are really great advocates/researchers who provide great insight for both other autistic people and non autistic parents. Have you watched Aucademy’s videos on burnout with Jodie Smitten and also Kieran Rose’s appearances covering masking? Very informative and also easily understandable.

Jenny Butterfly said:

I can find more in the way of descriptions of burnout than help though.  I suppose it's a highly individual matter as to what will support someone, but I'm really stuck when it comes to helping the young adults in my own household. 

This must be really difficult to manage as a family. I hope you find it reassuring to know that  your young adults are not alone, there are many another young autistic people going through similar experiences.

I think you are right though the experience of autistic burnout is so personal that it is difficult to recommend any specific help. I would generally recommend some autistic self care with a low arousal/low expectation environment. Unmasking in a safe space is also a really important part of autistic self care as burnout can be caused by excessive masking. Like I said before Jodie Smitten’s videos are really good. These videos might be useful:

https://youtu.be/ZjaeP-Gf9uk

https://youtu.be/Tu07ouTUDBQ

Jenny Butterfly said:

And I find the apparent overlap between the definitions of burnout and autistic catatonia quite confusing too.  

Yes so do I, I think they can look quite similar. Catatonia might a physical response to burnout so that you aren’t actually able to adhere to anymore expectations. I think catatonia might also be similar to autistic shutdown because the stupor may be a freeze response.  I want to do more research on this topic.

These articles might be interesting and hopefully provide some clarification about catatonia:

https://neuroclastic.com/is-it-selective-mutism-or-chronic-catatonia/

https://neuroclastic.com/chronic-catatonia-order-yourself-into-action/

I hope my response is helpful and you are able to access the support you need for your young adults.

Yes, Dora Raymaker is doing some good work in this area.  Likewise Kieran Rose, Amy Pearson and, for autistic children and teens, Jodie Smitten.  

I can find more in the way of descriptions of burnout than help though.  I suppose it's a highly individual matter as to what will support someone, but I'm really stuck when it comes to helping the young adults in my own household.  And I find the apparent overlap between the definitions of burnout and autistic catatonia quite confusing too.   

Thanks for the definition.