Useful resources/webinars etc on burnout, extreme withdrawal and hygiene issues in adults?

Hi Jenny.

Thankyou so much for taking the time to reply.

I will definitely take a look through the links you've sent. I do agree that we can learn the most from actual autistics but I think like you so far I just have the reducing expectations and demands and giving time.

Although Jodie Smitten's Burnout First Aid course focusses on school age children (£8 from her website) some of it is applicable to older children and adults and you can get the gist from various youtube videos.  E.g.  https://www.youtube.com/watch?v=ZjaeP-Gf9uk&t=5907s.

It might also be worth zooming in on any talks by Dora Raymaker, although unfortuantely the research int his area seems to be in its infancy.  She's in one of the talks on Kieran's website, though, if you scroll down here: https://theautisticadvocate.com/autistic-masking/

Aucademy and Ausome Training are also worth a look, I think, plus the Gecko.Community for under 25s.

But really, after all my sifting and searching, I'd still like to sit down with a professional who can help us work through severe chronic burnout in adults and the various effects within the family as well as on the individual.  I'm not sure such an individual exists and, of course, access to such services would be complicated by the need for individual autonomy and confidentiality such that, if an individual makes a capacitous decision to refuse all help, the family can do very little.    

Hello there and welcome to the group.  I think that, although autistic burnout isn't much mentioned by diagnosticians or NHS staff generally, it comes up quite often within autistic communities.  I'm still struggling however, because much of this is first person accounts of how an individual managed to come through whereas what I need is third person accounts of how families or carers helped someone through.  

I did get a few pointers from the North East Autism Society, who provided me with the following links, which might be useful if you haven't already seen them:-

I would say that Kieran Rose is the most useful and informative person ont his subject, so it might be worth following him on Facebook or looking at his Autistic Advocate website.  But, that said, most advice is simply to reduce demands and be very supportive and empathic.  

What I actually think we need is someone (probably someone who is themselves autistic) with some expertise and experience in this area who can sit down and guide and advise us on how to help/support and how to improve our family dynamics and increase our son's feelings of safety and belonging.  We do our best but we've only known that we are a neurodivergent family for the past few years and certainly had no idea when our sons were growing up.  So some damage has already been done.  Over and over, I think, which is hard to come to terms with.

Although Jodie Smitten works with school age children, it might still be worth a look at her resources as she's done a lot of work in this area too.  

I'll have a think to see whether I've come across anything else that is useful but really we can't say we've found our way through yet and it's now been several years.  :(

Hi Jenny. I have just joined this community today and was very interested to read about your struggles regarding burnout with your son. My son is 17 and is very stuck currently in an autism burnout following a breakdown and loss of community support a couple of years ago. He has since become very stuck in completing his daily routines needing them to be done with a certain person - not always available who he has become dependent on since the support loss. He doesn't engage with anyone currently apart from myself which is mainly on his terms. Current professionals involved don't understand at all and just blame my parenting.

You are the first person I have come across who seems to be experiencing a very similar situation. If there is anything you can advise or direct me to I would be most grateful!

We're still struggling with all of this.  :(  How on earth can parents help or support an adult son or daughter who is in a state of almost total withdrawal and how can they get help or support for themselves when the situation has become chronic, (however it's termed (fatigue/burnout/shutdown/catatonia)?

On the one hand there are first person accounts of burnout and recovery that seem to focus on a more episodic kind of burnout which eventually fades if the person is given rest, few demands, empathic understanding etc.  And there are third person accounts that are more medicalised and refer to "catatonia" but which seem to be describing many of the same experiences (I'm thinking of Amitta Shah's book) and enlisting the help of services (where are these?). 

But what is there for families where the person themselves is too withdrawn to seek help or engage to any degree and services have also withdrawn, on the basis that the person themselves is making an autonomous decision to refuse help and they'll step in when the person is ready (they're not showing any signs of this and it's been YEARS!).  Where can families turn or do we just have to live with this indefinitely with no support?  

Is there anyone we can consult about this?  Most help seems to be geared towards younger children, not adults still living in the family home, but our youngest age of diagnosis is 26 (i.e. beyond the age where many services seem to just halt).       

At a glance I would say I need something which zooms in on the scenario described in the second link - i.e. "Some autistic people have described burnout that is so severe its effects have persisted for years."  It'd be handy to know what on earth to say to the DWP when this occurs too (esp. with no corroborative evidence because of non engagement with services).

Ah, i though the freezing was catatonia.  I'm working on the assumption that what we're strugggling with is chronic burnout.   Adult is 26, life mainly limited to one room, poor hygiene, little interaction with anyone inside or outside the home (outside is limited to occasional shopping), chronically fearful, reverse sleeping (to be able to enjoy the house while others are safely asleep?) and avoids other family members as far as possible.  Now in this situation for years.

The info I'm seeking would be along the lines of how to support and reconnect with the person whilst all the time working outside services (which in the past proved to be damaging anyway).  i.e. family case studies from those who've come through this kind of situation, detailed explanations of how this occurs and how we can reverse the process.  Feeling desperate.   

Thank you.  Will have a look at the links. 

shutdown - is on two forms like the person is asleep head down on desk for 2 hours to 8 hours, cant communicate or they freeze standing up in the street and cant talk or respond 

is this your daughter / son what age? how do they eat ,,, do they go to toilet etc move around house

help out of  burnout (autistic ) attached 

link 1 from NAS

www.autism.org.uk/.../autistic-adults

link 2

www.spectrumnews.org/.../

link 3 

neuroclastic.com/.../

Working through the various resources, some of which I'd already come across.  And I'm wondering - is there anywhere where I can find definitions of specific terms?  In particular, I'm looking to differentiate between burnout, chronic burnout, shutdown, catatonia and being "deep in defence mode" (that latter term borrowed from Asperger Experts).

I'd also like more information (if it exists) on how to help someone out of what I think is chronic burnout.  i.e. totally closed down, uncommunicative, living in one room, refusing to engage with services.  Situation ongoing for some years now and so far I've not found anything to really help. 

Hi Jenny,

There are some advice pages here on the site which might be helpful to you. I would suggest you have a look at the mental health section - https://www.autism.org.uk/advice-and-guidance/topics/mental-health - and some of the subtopics here, like depression, fatigue and catatonia. The autistic fatigue page in particular sounds like it might be most relevant to you - https://www.autism.org.uk/advice-and-guidance/topics/mental-health/autistic-fatigue/parents - and there are links to several other resources, personal accounts and podcasts at the bottom of the page.

Hope this is of some help,
Best wishes,
Ross - mod