I think I’ve spent my entire life telling people I’m tired. Family, friends, work colleagues. healthcare professionals: whenever I’m asked how I’m feeling my response is “I’m tired”.
I sometimes get the impression people think I’ve merely had a bad night’s sleep or I need to go to bed earlier. It’s more than that though and no amount of sleep will resolve the feeling. I feel it with my entire physical and mental being. My brain is tired, my senses are tired, my limbs are tired, my organs are tired, my social skills are tired, my soul is tired.
The tired feeling is so all-consuming at times that pre-diagnosis I would go to the Doctors and try to convey just how tired I was and how much it affected me. The Doctor would always do a blood test and the results would always be conclusive that nothing was wrong. I would be sent away and told to just get more sleep.
Autistic Fatigue is hard to describe unless you’ve experienced it for yourself – which for neurotypicals is impossible. It is a feeling of complete exhaustion; you can’t think straight and even talking can become challenging. I often imagine my body has a battery and that battery is often in the red zone.
My battery is drained by lights, sounds, smells, the pressure to mask and any form of socialising. Time to myself sitting in complete silence and darkness helps me to re-charge but sometimes the fatigue reaches a point which is too severe and my usual recharging techniques don’t work. My battery keeps draining and draining until it flat lines, this is when I burnout and shutdown.
Due to the pressures of everyday life, having to navigate social situations and sensory overload my body can reach a point where it turns itself off. My body physically aches, I get painful headaches and speaking becomes the hardest thing imaginable – I must use everything within me to mask and try to keep functioning and communicate like society expects of me.
Ideally when my shutdowns hit, I need to crawl under my duvet and hibernate until my body has recovered and regained its strength. Unfortunately, this isn’t always possible.
I work full time and calling in sick because I’m having an Autistic burnout is not seen as acceptable. So, I force myself out of bed each day and I keep going to work, my battery depleted and unable to recharge. It’s difficult because I know how lucky I am to be in employment when so many on the Spectrum struggle to get a job. I want to set an example that people on the spectrum can succeed in places of work when given the opportunity. Therefore, I always give 100% within my job role and I put pressure on myself to be the perfect employee. To achieve this ‘perfect’ persona I feel the habitual need to mask my Autism which then has negative effects on my health and energy levels.
Usually, I can use the weekends to get my mental and physical strength back for the following week of work. Sometimes this means cancelling on social plans or saying no to meeting up with friends. I will then get frustrated and upset that I can’t have fun at the weekends like my family and friends do and begin to ‘hate’ that I am Autistic. It feels like Groundhog Day, I work all week and become drained, I then spend my weekends doing nothing just so I don’t breakdown at work the following week and don’t let my employers down… and then it repeats over and over again.
I’ll then get into the mindset that I can do anything a neurotypical can and that I cannot and will not allow my autistic traits to stop me. I’ll socialise at weekends and continue to work full time, pushing my fatigue further and further until finally I reach breaking point.
This is what happened last month. I experienced my worst shutdown in years. In February I got married and whilst it was the most incredible day it was still challenging for me. The build up to our wedding day involved lots of visitors at our house all week wanting to wish us Good Luck when all I needed was quiet time, alone. The week after the wedding, everyone then wanted to come back and wish us Congratulations – I just wanted to put a sign on the door saying, “THANK YOU FOR YOUR KINDNESS BUT I’M AUTISTIC, THE BEST GIFT YOU CAN GIVE ME IS TO PLEASE GO AWAY”. If only this was socially acceptable.
I went back to work for a week and then the week after I came down with a chest infection – my body’s way of telling me, “You’ve done too much now, please slow down before we burnout”. After a week off work with a chest infection I then returned to work again, still under the weather and ended up working alone as my colleague was now ill; trying to cover workload whilst playing catch up with my own load. The week after we then had someone leave at work and a new starter begin; all that change in a familiar environment hurt my head in ways I can’t explain. That weekend I completely shut down. I couldn’t speak to my partner, I couldn’t leave the house – I just lay on the sofa, staring at a blank TV screen.
A shutdown is a strange experience, I can’t really explain it, but you become so tired it’s like you’re no longer in your own body. I can’t really remember much; you sort of disassociate from yourself. I know that noises, even my partner speaking, were excruciatingly painful and all I wanted to do was hide and cry.
A day or two later I was able to start piecing myself back together. I reflected and thought about what had caused my shutdown and began to take steps to recharge my flat lined battery. I cancelled all social arrangements, and I made sure that after each working day I took some quiet time to recharge. It’s taken a month, but I finally feel like my battery is somewhat full again and I feel more human and back in control. I’m now trying to maintain my battery’s charge and am back to playing Groundhog Day.
It will always be frustrating for me that I can’t do it all. I can’t work full time, maintain a household, and have a social life. No matter how much I try to defy the odds and prove to myself that my Autism isn’t a barrier, because society won’t make the accommodations I need, I’m forced to admit that my Autistic traits do hinder me and stop me from living a neurotypical lifestyle.
Some steps I have learnt to take over the years, which work for me, are:
• If I have a social event at a weekend which I know will be challenging, I will book annual leave for the following workday to allow me that extra time to recharge.
• I will tell my family and friends when I am reaching the burnout point and they will help me rest and give me space.
• I try to avoid having plans for multiple weekends in a row. I find if I have one weekend of plans and the next weekend at home resting, then I can cope much better.
• I don’t make plans after work; I go home and rest so that my performance at work is not affected the following day.
• No matter how tired I feel I will try and make myself exercise. Even on my lowest energy days just getting outside in the fresh air and running or walking for half an hour can make me feel so much better. I find the repetitiveness of my feet hitting the pavement comforting and grounding.
It has taken me many years of pushing myself too far to realise what is beneficial for me and what is not. I still have the odd day where I have no choice but to phone in sick to work or cancel a social event because I do not physically or mentally have the strength to carry on acting like (what is deemed) ‘normal’.
It’s all about listening to your body and mind and doing what’s right for your autistic self. It’s important to know your limits and it’s equally as important for society to be educated and accommodating; hopefully this post can help contribute towards helping society understand what life can be like for those with an ASD diagnosis.
For further information and advice on Autistic Fatigue please click here.