New here: recognising autistic burnout after years of masking

F

fancypants

New member
Hi everyone,

I’m new to the forum, so I wanted to introduce myself. I’m a 52-year-old man, and I’m here because I’m trying to understand autistic burnout and what recovery might realistically look like.

I’ve had a lot of good things in my life. I have a beautiful, very supportive partner and two lovely children, one of whom is autistic. I’ve also spent much of my working life around autistic young people, and I think I suspected I was autistic from the moment I started doing that work. There was a recognition there that I couldn’t quite ignore. Within my professional sphere I'm senior and well respected - but that being said I don't feel able to continue.

What I didn’t appreciate, though, was the degree to which I was masking. I think I built a life around coping, adapting, reading situations, managing other people’s expectations, and pushing through. For a long time I could do it, or at least I thought I could. But now I feel like I can’t do it anymore.

At the moment I’m really struggling. I’m finding it hard to get out of bed, I’m exhausted all the time, and my sleep is all over the place: sometimes I sleep a lot, and sometimes I barely sleep at all. My hair is falling out, and I have high blood pressure. I've changed frorm someone who was comfortable managing a team or speaking in front of a grouo od expers, and right now I struggle to organise and cook a simple meal. I know some of that needs proper medical attention, and I’m not looking for medical advice here, but I do feel as though my body and mind are telling me very clearly that I can’t carry on as I have been. It's deeply unsettling. I don't know who I am any more.

The exhaustion feels deeper than ordinary tiredness. Things I used to manage now feel much harder, and I’m trying to understand what has happened without turning it into self-blame. I’m also trying to work out what recovery means when masking has been such a big part of how I got through life.

I’d really value hearing from other autistic adults, especially people who have experienced burnout in midlife or after years of masking. How did you recognise what was happening? What helped you recover or reduce the pressure? Were there things you had to stop doing, change, or accept?

I’m not looking for medical advice, just lived experience and peer support from people who understand this from the inside. I’m hoping this might be a place where I can be honest, learn from others, and feel a bit less alone.

Thanks for reading.
 
Welcome. There are lots of us here with experience of autistic burnout. I'm currently on the Pathway Programme and can thoroughly recommend it. It's for newly diagnosed/self identified autistics and covers burnout and so much more. I suggest you sign up for the next course.

In terms of burnout in middle age, it's often a combination of masking and cognitive and sensory overload. I've been in burnout for over a year and it's much more than physical exhaustion. I've withdrawn socially because my social battery gets really rundown and my sensory sensitivities are heightened. For me the difference from depression is that my concentration is good and I can read and do solitary activities at home. I did get very fatigued needing 10 hours sleep a night, sometimes more, but I'm needing less now.

One lovely thing about the Pathway Programme is the support group and hearing from others and sharing coping strategies. Many are in burnout and some quite severe burnout and it's good to know you are not alone. Medical acceptance of autistic burnout is limited and I really struggled with friends who treated like depression and encouraged exercise and socialising when I instinctively knew I had no energy for this. I found totally withdrawing into my ien space lifted my energy and I'm generally quite a sociable person.

I've come to diagnosis through seeking help for my mental health as I also have Complex trauma symptoms. I had no idea I might be autistic until late November last year and it's been a huge shock. However my instincts around my burnout have proved correct, and especially for women the menopause can really trigger an inability to carry on masking and coping with autism and the wheels coming off.
 
That’s really helpful.

I’ve been depressed in the past, but that’s not how I feel now. I feel flat. Exhausted. Unsure of myself. Spent. Incapacitated. And, I don’t say this lightly, disabled.

What’s the Pathway Programme?
 
See the link below. The website is quite clunky, but you should be able to see an outline of the programme including videos of past sessions and being able to register your interest. Depending on when they get funding a new intake will be later this year or early next year.

The Pathway programme – Tool up

ndsa.uk ndsa.uk

It's run by ND people for ND people, so nobody is talking about things they don't have personal experience of.

It's a 3 part programme with weekly teaching sessions, a weekly support group and 1:1 mentoring. You'd meet people with similar experiences and in your 1:1 mentoring could look at burnout as one of your goals. My homework this week was to look at this but my brain is struggling with the heat and new medication.

My burnout is different to part experiences of depression, but extremely disabling. I also have anxiety at the moment which is probably the most disabling aspect. Autistic burnout is not well understood medically and often misdiagnosed, partly as it's not an official diagnosis. I've found withdrawing rather than pushing through most helpful.
 
(I just wrote a long reply and it didn't post, so I will summarize briefly here).
I just recovered from a year of severe burnout. It does get better. In order to recover I had to have total rest: 5 months off work, partner did all the chores, no to almost all social events, had to deal with my new severe noise sensitivity. I had to learn how to rest too! I had no idea what refreshed me, or made me feel better. Masking for years makes you so disconnected from your own feelings and needs. I had to accept that I wouldn't be able to work as many hours (I was already part time), and had to change my role to remote working. I had to be willing to "look autistic" by asking for adjustments at work, wearing headphones in public, and becoming more comfortable with stimming. It turns out stimming is amazingly good for my brain. I had no idea. I had just suppressed it. I think my burnout was perpetuated by anxiety around my brain and body failing me. I had some private therapy and I also leaned heavily into my faith (Christian) to help me learn to let go (it's so scary!) Letting go of all my self-imposed pressures transformed me! I am now coping better than I have in years. But I'm also "more autistic" outwardly- I have accepted my limits and my identity. The pathway programme was absolutely vital in working through all of this. I really recommend it. It does get better.
 
Thank you both. Genuinely.

MadCatLady — what you said about it being more than physical exhaustion, and about withdrawing rather than pushing through. I’ve always done that. Faked it till I made it. I suspect that’s how I got here.

peony — “it does get better” is something I needed today. And the bit about having to learn how to rest, not even knowing what refreshes you. Yup.

Things I never used to think about — planning a meal, holding a conversation, remembering things — have become difficult. I’ve accepted I can’t go back to work as I am. That’s a hard thing to write when the job has been so much of who I am.

You’re both right that this is burnout, not depression. I’ve been depressed before. This is different.

I want to look at the Pathway Programme properly. I’ve tried to register a couple of times, from two email addresses, and the confirmation never arrives (junk checked). I’ve emailed NDSA directly.

Thank you both.