How I Recovered from Autistic Burnout (P.S. I’m still recovering…)

Nov 24, 2023

how I recovered from autistic burnout

Autistic burnout is something that many people within the autistic community experience and something that is relatively untouched in research. I’ve experienced a lot of burnout and get asked about it a lot, so I thought I would share some strategies on how I avoid and recover from autistic burnout!

Autistic burnout has been defined as:
“a highly debilitating condition characterised by exhaustion, withdrawal, executive function problems and generally reduced functioning, with increased manifestation of autistic traits – and distinct from depression and non-autistic burnout (Higgins et al., 2021)”.

My autistic burnout has been lifelong, it’s something that I have struggled with from my primary school years, but without the knowledge that I was autistic, it was mislabelled as anxiety, depression and even worse “defiance” or “laziness.”

At sixteen years old, I fell out with my friend group and could barely function. I had at least one day a week off school and barely spoke to people when I was there. I didn’t eat breakfast or lunch and I hardly slept. Doctors told me it was hormones. I stopped exercising and although I really wanted to do my hobbies, I had no motivation or energy for them. My parents took me to the gym with them to try and get me to do some workouts and I left without doing much, every bit of cardio felt too hard.

There was one time that my boyfriend at the time convinced me to go out on bikes and we cycled for 10 minutes before I threw the bike down and sat on the floor crying, claiming that I was just too tired. He couldn’t make sense of it, since I was a very fit person.

Fast forward four years and I entered the worst period of burnout I hopefully will ever experience at university. University is tough for an autistic person, so much change and pressure and demand. I was having to do life-skills I never had before, all whilst socialising outside of my capacity and attend a course that was a full time job, if not more. I crashed in a huge way and spent almost every day in bed. I couldn’t look after myself and some days would go without showering, eating or leaving the room. I didn’t exercise at all, the thought of it made me exhausted. I couldn’t concentrate on university work and my attention span reduced to two minutes in every single lecture. I stopped going because I wasn’t retaining any of it, even if I went. I shut everyone out and would pretend to be asleep or on the phone every time my housemates came to speak to me. I lived off pasta, ready made sauces and chocolate and generally had only one meal a day. Everything triggered me and I would snap at anyone who chewed too loudly or I could hear walking around the house. Every sound, light and touch felt painful, I was only ever safe in my bed.

And of course, there’s no quality of life living like this. So wherever there was burnout, there was also depression.

So, how did I get out of it?

I’m afraid if you’re looking for a cure or a quick fix, I can’t give you that. Burnout recovery is long and hard and constant work. My life continues to tiptoe on the edges of burnout daily and I have to use strategies every day to ensure that I don’t fall back into it. But I still do, because I live in a world that isn’t accessible for my neurotype. The difference is, now I have the awareness and the strategies to ensure I don’t stay in it too long.

 

how I recovered from autistic burnout

First things first, STOP.
This is the thing I was most resistant to do, just like many other neurodivergent people. I wanted to finish my degree just like everyone else, I didn’t want a break. I will admit now, if I didn’t have that break, I wouldn’t be alive today. That break came way too late for me and cost me years of suffering. I went home to be looked after by family and finally had my needs met after 4 long years. I started to eat healthily because I was cooked for, spend therapeutic time with my dog and all the adult demands I was struggling to keep up with were managed by my support network.

I spent almost all of my time focusing on myself, meeting my needs and regulating my emotions. I had 12 hours of sleep each day and did what I could that day, no more. I read books and walked my dog and exercised when I had enough energy. It was exactly what I needed.

I know that it’s not easy to make the decision to press pause. For some it’s not a decision. I entered another period of burnout only last year, where I couldn’t continue to work and had to change something. I gave all of my energy to work and had nothing left in me afterwards. I wasn’t living. I made the scary decision to go self-employed but I knew I needed some time off before I started working again. I panicked that we wouldn’t be able to pay the mortgage, the rising food bills and the heating. My partner told me that my life was worth more than the bills being paid. If I wasn’t alive, the bills wouldn’t get paid anyway. Taking two months off work unpaid was the best decision I ever made. From here, I’ve learnt to put money away each month in case I need some extra time off work to rest and reset.

Reduce demands
Pressure and demands exacerbates burnout. We can do all the self-care we want but if our demands aren’t lessened, our capacity to cope with life won’t improve. I tried for years to manage my burnout with yoga and exercise and mindfulness but with the stress of my job, the deadlines and social commitments, I wasn’t getting anywhere.
It was really helpful for me to learn about Spoon Theory and energy management strategies as part of this aspect of recovery. By learning what gave and took away my energy, I was able to balance out my energy levels each day. This also meant delegating things to others, including asking my partner to do the weekly shop, getting a cleaner and asking my parents to help me with every day admin. Sharing the load with others really helped to lower demands, as they became shared demands we could work through together. Again, I acknowledge that I’m in a very privileged position to be able to rely on others this way.

I realise now that when I’m going into burnout the first thing I lose is my executive functions, my brain’s ability to plan and organise. I start to find to-do lists overwhelming, I forget where my things are, miss appointments or procrastinate the things that need doing. Now I know that my ADHD plays a big part of this, however when things started getting really bad, I am now able to differentiate between burnout and my general ADHD traits. I find there are some days where my head just hurts when I have to process too much information or too many things to do. I also tend to get stuck in autistic inertia for longer and more regularly, sitting in my car for hours once I’ve got home or not being able to transition into he shower after the gym. At this point, I need to ask for help.

Usually, my partner will recognise that I’m struggling to follow the sequence of my daily routine and will prompt me to move onto the next stage. He gives me time warnings of when to start making tea and helps me break down tasks into smaller steps. We tackle tasks together and he takes on the bits I’m having most difficulty starting, whilst I get on with the things that require less executive function demand.

I realise now, it was much easier to recover from burnout as a child because I had less demands on me generally and I could engage in play and my passions more readily.

Use AAC
After a long day of masking at school, I would always need time to be silent and not communicate with other people. If others tried to communicate with me and expect a verbal response I would be very irritable and run off to be alone. After my autism diagnosis, I realised that I am semi-speaking and sometimes run out of words after long periods of processing language. I need silence to help recuperate energy for speech and so I sometimes communicate using AAC (Alternative and Augmentative Communication). This can sometimes be a text-to-speech app on my phone or iPad (ClaroCom/Text To Speech). It can also be communication cards, which you can get on Etsy here. Alternatively, I might not be able to communicate with either of these resources and be limited to very small gesture.

When I converse speech, it really helps me to manage my energy levels. So days before I am doing a presentation or going out with friends I will have a home working day and will not use speech as much as possible. Generally, I find I need to use AAC more often when I’m in burnout and to help me recover from burnout.

Meet your sensory needs
When I’m entering burnout, I have identified that I tend to become more triggered more quickly by my sensory environment. I am more easily triggered because my capacity for sensory stimulus is reduced. One of the prominent signs for entering burnout is when my partner uses mouthwash, my sensitivity to this smell will be much lower. During times of burnout, I ask him to use mouthwash after I have used the bathroom. I don’t use public transport when I’m burnt out and I will be careful with when I go to the gym and what I do there. I avoid busy and noisy environments and my partner will generally do the food shop so that I can avoid things that make me overstimulated. When I’m not burnt out, I can manage these things in bigger quantities but in burnout I am unable to cope with hardly any sensory input.

I tend to wear Loops earplugs most of the day, use hats and sunglasses to block out light and wear an eye mask to sleep. I ask other people not to touch me where possible and don’t engage in physical activity that will trigger my sensory sensitivities. It can be difficult to navigate the sensory world in burnout, so I tend to spend more time at home where I can control these sensory triggers. This means catching up with friends and family online and having takeaways rather than going out to eat. Making lifestyle adjustments can reduce the overwhelm to our sensory systems, where possible.

Spend time in nature
For me, nature is healing. There is nothing better than going on a quiet walk in the trees or going for a hike with my assistance dog. I find comfort and peace in nature and it helps my burnout recovery more than anything else. It’s very hard to go out of the house when I’m burnt out and going for a dog walk every day is the only thing that I can get out the house for. It feels very difficult to go anywhere where I might have to communicate with other people and so it’s much safer in nature, where I hardly see people and there’s no reason or expectation to talk, other than to sometimes say “hello.”

Movement is also something that is really helpful for managing burnout. Intense exercise can feel like too much of a hurdle when you’re exhausted but walking at your own pace in the outdoors can feel much more accessible. I also enjoy silent walks with other people, when I don’t have capacity for speech or interaction. My friends and family have learnt that sometimes this is just what I need and are happy to be in quiet company with me.

Have time for yourself
I have always got quickly overwhelmed by social plans and end up planning way too much in when I feel better. That means I end up cancelling plans or attending them when I’m not in the right mindset, which results in burnout. I’ve got better at feeling okay about cancelling plans when I’m not in the right place to continue with them and my friends have got better at understanding the more I explain it to them. I have ended up ending friendships where there isn’t acceptance of this because the pressure felt too much and I didn’t want to continue being made to feel guilty for something I have no control over.

During burnout, I need to spend a lot of time by myself or in silence with other people. I enjoy sitting alongside my partner and watching TV or doing things together but separately without communication. Being completely by myself doesn’t always make me feel better, but I also don’t feel I have enough energy for social interactions. It’s okay to communicate directly at these times. It’s okay to cancel plans. It’s okay to not be able to respond to messages. I find it helps me to have a tagline attached to my emails and WhatsApp messages that notifies people that I’m in burnout and may take longer to respond at the moment. It allows people to respect my boundaries and not send me multiple messages. My friends and family have also learnt to send me messages/emails that start with HIGH IMPORTANCE if they need me to answering something quickly. I find that it is easier to respond to these messages because they are usually a quick answer that doesn’t need a follow up. I know that those people are happy for me to get back to their other messages when I feel ready.

Be kind to yourself about how much social energy you have. Keep the energy that you have for your recovery as much as you can.

Understand that burnout recovery is not linear
Unfortunately, our burnout recovery isn’t quickly fixed and it’s something that we might dip in and out of frequently. Once we are starting to recover, it doesn’t mean that every day will be easier. Some days, I have woken up feeling refreshed from sleep and ready to write work reports and see people, other days I feel like I haven’t had enough rest and feel overwhelmed by any kind of to-do list. To understand where you are in burnout recovery, it’s important to look at the average rather than your best and worst days. Until you are consistently more able to go back to the things you could do before, you’re probably not ready to add any extra demands into the mix. If we rush these things, we’ll likely get back to the same place we were in before.

how I recovered from autistic burnout

At university, I kept thinking that over the Christmas holidays, I would have time to recover and so I booked things in for after this period. It turned out I wasn’t ready and any recovery progress I’d made was wasted as I re-entered burnout that was even worse in the long term. You cannot put a time on burnout recovery, it will be different for everyone and at different points in time. I find that the more burnouts I have, the more time it takes to recover, therefore I have to make sure I’m adequately recovered before I get back to normal life. Putting pressure and a timescale on our recovery just makes it harder to get better.

 

 

The reality is, it’s all very individual to each person and is a learning process, but I hope in some way this helps!

Hat x

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