Caring while neurodivergent

Hi everyone, first time posting, and I think I just need to get things off my chest, hope this is okay. My situation is that I’m currently a temporary carer for a loved one who’s going through a difficult mental health time (after some life events, they’re having a big flare-up of long-term depression, anxiety and PTSD; they also have ADHD). It’s been going on for a few months now, and I’ve been spending weeks at a time with them, on and off, insofar as my other life commitments allowed. They’re slowly getting better (and have therapy coming down the pipeline soon), so I’m hopeful.

One aspect that makes it difficult for me, though, is that I am autistic, and need a lot of alone time and quiet to recharge my batteries. At the same time, the biggest form of support my loved one needs is company. So it’s a continuous struggle to find the place where I can support them without burning myself out. I’ve already had a few meltdowns because of not having enough time and space for my own mental health.

Today is shaping up really challenging, in part because my plans for the day are going off the rails (and that’s another thing that really upsets me as an autistic). For the past week or so, my loved one has been doing relatively well, so I was going to spend today on my own projects: first, do my paid work from a coffee shop (I work remotely), and then do my creative work in the evening. We talked about my plans ahead of time, and were in agreement. Unfortunately, last night, an unrelated event triggered another anxiety episode for my love, and they’d been spiraling since then. They insisted I still go through with my plans, though, and I felt that, although they’re very anxious, they would be safe at home alone for a few hours.

Still, I offered that they walk to the cafe with me, just to get some fresh air. They liked the idea. Towards the end of that short walk, it became apparent to me that they had interpreted my invitation as “come sit with me while I do my work”. And I decided to let that happen, even though I knew it would be bad for my ability to concentrate. Still, I adjusted the day’s plan in my head again and confirmed that they were welcome to stay. Then, just as I was done with my food and about to start work, they got up and declared they were going home so as not to be in my way… just as I’d successfully wrapped my mind around the idea of working with them sitting nearby.

I know that to some, these changes may sound insignificant, but my brain has trouble dealing with them, and now, instead of sighing with relief and getting on with my work, I’m fighting back tears in the middle of a cafe and typing this up. I feel so frustrated and out of control. And also really annoyed: because I know that my loved one thought they were doing a nice thing for me by taking themselves home to give me the space to work, but in reality, this one more change in my day only served to stress me out more.

I’ve been reading posts on here, and I’m aware that my struggles fade in comparison to what other folks are going through, but I just really needed to get this out. If you’ve read this, thank you.

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Hi loki109, welcome to the forum. Everyone who is a carer all go through a hard time, so you aren’t alone there. Do you have a social worker or someone who you can chat to about the matter? If you have they should be giving you more support but also to help you sort the matter out with the mental health services. Maybe speak to who is looking after the person mental health of the person who you are caring for. Don’t be afraid to speak out as if others don’t know that you need help, you get left behind. Good luck

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Hi @Loki109 - welcome aboard!

My youngest son has autism, and changes to routine - or to plans - always rock him. We can usually get him to adjust to plan B - the worst one was going through the alphabet to plan F because of problems on the way (!) and a massive meltdown had to follow…but he adjusted eventually. He can also feel overwhelmed by people and needs regular quiet time without interruptions. Thinking about it, I’m a bit that way in the mornings and need that “wake up” time before having to speak to family members, or anyone else for that matter. So I understand a little.

Sometimes, doing what is right for our loved ones is not as right for us. That can be hard to deal with and I think all of us go through that at some point - and it’s usually the “little” things that trigger it. With autism, it takes longer to get over each stressor, so the pressure builds up more, distracting you from your plans and adding even more to the stress.

Do you have a technique that helps to calm you? With Mike (my son), some music can help, or distracting him with a task like getting a cup of tea. Something that he can do without having to think too hard about it, and that is comforting. Perhaps you can find a similar technique.

I’ve spent years working with carers whilst being one. I don’t think in terms of comparing lives: our own health and needs impact on how the caring role affects us, and we all cope with things differently. Please look after yourself and keep coming back - the “Roll Call” is sometimes good fun!


Hi i can completely emphathise with you, i am also neurodivergent and care for my grandma. Youre not alone in being upset over routine changes and its a huge thing, particularly how it affects neurodivergent minds. Your feelings are 100% valid and involuntary.

Its so hard to take time out for myself to recharge but then i try tell myself its so that I can be better company for her the next day - quality over quantity and thats a boundary only I can see the importance of (mo one else is in my head). But its so hard with the associated guilt…

One thing im trying to remember to order is a sunflower lanyard (hidden disabilities scheme) to take with me to hospital and doctor appointments, so I feel like I will be safer if I get overwhelmed and need people to repeat things etc.