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Autistic burnout while supporting a seriously ill parent - where do I start?

ThePixelPusher

Hello everyone,

At the moment, my dad is seriously ill in hospital and I'm trying to support him while also trying to navigate my own health, as well as the GP, social care and benefits. My Dad has always been my filter to the outside world, and I've realised that I think I'm approaching autistic burnout and I'm finding executive functioning much harder than usual.

I've contacted my GP, Macmillan, Carers Support West Sussex and a few local organisations, but I wondered if anyone who has been through something similar had any advice.

In particular I'd be interested to know:

  • What support actually helped you when you reached burnout?
  • Was there an organisation that made a real difference?
  • Did anyone find an autism advocacy service that was genuinely useful?
  • If you claimed PIP as an autistic adult, what evidence did you find was most helpful?

I'm not looking for medical advice, just to learn from other autistic adults who have been through similar situations.

Thank you.

  • in reply to ThePixelPusher

    At the moment my Dad is waiting for detailed results of his biopsy so we don’t have any clarity on the longer term outcome. I’ve done my own research which doesn’t look good but waiting and not knowing is unsettling. At the moment he’s in a rehabilitation unit to try and improve his strength and movement. I haven’t contacted MacMillan yet but good to hear they’ve been supportive. I regulate by being by myself, walking and listening to music. It doesn’t change the situation but I know I need to gI’ve myself alone time. 

  • in reply to Suzanne Mod

    Thank you, Suzanne.

    I really appreciate the links. I'll have a look through the advocacy directory as that's one of the areas I'm struggling with the most at the moment.

    I'm finding that trying to navigate the GP, hospital, social care, benefits and caring responsibilities all at the same time is becoming overwhelming. I'm hoping to speak to my GP next week about getting some additional support in place.

    Thank you again for taking the time to reply.

  • in reply to Nutmeg

    Thank you for replying, and I'm really sorry to hear about your dad. It sounds like you're carrying an awful lot as well, especially with starting a new job on top of everything else.

    To answer your question, I think I'm functioning because I have to rather than because I'm coping. My days seem to revolve around hospital visits, trying to sort things out for my dad, and then coming home exhausted. The things that used to help me regulate my everyday routines have almost disappeared, and I think that's why everything suddenly feels so much harder.

    I don't really have much of a support network outside my dad, so I'm trying to reach out now rather than waiting until I completely burn out.

    Can I ask how you're managing with your dad's diagnosis? Have you found anything that's genuinely helped, or are you still trying to work that out yourself? Also, have you found Macmillan supportive? They've been helping me a bit already and I've been pleasantly surprised.

  • I'll just mention these additional NAS resources:

    NAS Professional Practice - Understanding autistic burnout

    NAS - Seeking help with mental health

    There's also some great (free) advice here from Dr Megan Neff - a neurodivergent author, clinician and advocate - that I've found helpful:

    Autistic Burnout Recovery: How to Build a Recovery Plan

    I also have this book of hers. It's very user-friendly, including lots of diagrams and worksheets:

    The Autistic Burnout Workbook: Your Guide to Your Personal Recovery Plan

    I hope you can find a sustainable way to cope through this difficult time, and that your GP and the other organisations you've contacted can provide some meaningful help.

  • Hello, sorry you’re going through all this. I came on here because I’m really overwhelmed and part of that is my Dad’s been diagnosed with stage 4 cancer. It’s all too much. I have been made redundant and am starting a new job in September so lots of new and unfamiliar things coming up. There seems too many people at home but no one I can talk to. How is it for you? What do you need to feel supported or more able to cope?

  • Hi ThePixelPusher,

    I am sorry to hear that you have such a lot on your plate at the moment.  This can be a very tricky situation.  

    I am sure our community members will share their own experiences.  In the meantime here are some links which may be useful.

    Autistic fatigue and burnout provides some advice and guidance on burnout.

    Autism Services Directory  you may be able to source some local advocacy options 

    Benefits we have some information on benefits here.

    I hope this information gives you a useful starting point.

    Take Care

    Suzanne Mod