My Burnout (and why autism is behind it)

In the last few years, I’ve become a tired person. All of a sudden. 

As a child, I didn’t sleep well but it never seemed to affect my mental tiredness levels: my Mum used to joke that I had two brains which took it in turns to be awake. I was always switched on. At night, I felt so alone: awake when it felt like everyone else in the world was asleep.

Once it became my decision what time I went to bed, I always chose to stay up late, even if I knew I had to be up early. Bedtime was a bad experience for me: if I went to bed at a more sensible time, I would just lie awake ruminating over all  manner of worries. 

I wrote my dissertation at night - all of it. I never felt able to focus on it when there were potential distractions: people moving around the house, talking, watching tv etc. Once the house was quiet, I’d sit at the keyboard and write intensely for hours. I started doing most of my work at that time, even after spending the evening in the pub. I felt like I needed to be present at University and I would go in during the daytime but I was totally unproductive. It was a waste of my time: I’d have been better off at home playing guitar; at least that would have been creative. 

When I moved away from home and quickly found new friends, I would be out almost every night of the week, often straight after work until closing time. It didn’t affect my work at all: I didn’t tend to feel tired. In fact if there wasn’t something happening, I’d try to make sure there was. I certainly exhausted a few friendships, constantly wanting to be out and about and needing company to do so. I think that comes from a life-long feeling of isolation but that’s probably a topic for another time. 

In 2003, my first ever serious relationship came to a rather messy end. I had to move out of a shared house into a little studio flat on my own and, again, that is probably another topic for another time. I hated where I was working and had felt stuck there. I didn't get on with my colleagues and frankly, it was like a sweat-shop: literally, the heat from the machines and lack of ventilation made me really really hot all the time. The machines broke down regularly and yet   we had to somehow meet customer deadlines. One day, in the midst of depression, a machine let me down AGAIN and I lost my temper, knocking my water on the floor and shouting a profanity. I was sent home and later sacked by post. Cowards. 

It took me a while to get my career back on track: in all honesty, I wasn’t that bothered; I just wanted to have enough money to get by and earn similar to the average salary in my friendship group. After a few years working in advertising, earning a reasonable wage, the financial crash hit and I was made redundant. 

I was in my early 30s and spent more than a year scratching around for bits of work. It was really difficult and I went through some very dark times. When I managed to get a chance at a new career, I grabbed it and worked unpaid overtime and took on responsibilities way over my pay grade in order to keep that foothold. I worked my way up from the lowliest agency temp position to junior management level in less than four years.

By this point, friends had started to buy houses in suburbs further away from each other, and started to have children. Nights out became rare but I’d be one of the people making sure there was one to look forward to. Then I became a parent, and everything changed. 

I’d previously always worked extra hours; worried that I wasn’t performing well enough and always with too much work to manage. Finding out that we were having a baby coincided with me moving into a new role at work and I was able to make a fresh start and do away with the unpaid overtime. I think that probably delayed my burnout. 

I've felt a wonderful connection with our son from the moment I was left standing on my own holding that tiny, squinting bundle in an empty delivery room. I was petrified: he was very very small and attached to a blood oxygen monitor that started beeping every time he flinched and it seemed an age before anyone came back to make sure he was ok. But since that moment, everything has been about making sure this fantastic, funny, brilliant and unique boy grows up happy and knowing how much I love him. 

Of course, I expected parenthood to be tiring and I was committed to being a proper parent, not one of those Dads who say they’re ‘babysitting’ when they’re looking after their own children. As someone who had always been able to manage with little sleep, I assumed I'd cope better than most and at first and quite quickly, it was clear I wasn’t. The problem wasn't really anything to do with sleep: I didn’t know what was wrong. I knew what parenthood would entail and I was very aware of the commitment we were making. But I think we imagined our parents would be more able to help out on rare occasions so we could have a break. My parents weren't very forthcoming at all and my in-laws live a long way away. On the rare occasions we did plan something: a meal for our anniversary, or a gig in town, this tiny child seemed to know in advance and became sick or hit a point where he refused to sleep again. 

For a while, I was managing to hold things together. I think the turning point was when my Mum passed away. I was managing to ignore the old stuff my brain wanted me to deal with: all the things I hoped one day to be able to talk to her about, but I was worried about Dad. Mum had always done all the necessary things, like paying bills, insurance, banking and I was at least 90mins away by public transport. Again, I coped for a while but some months later, I could feel something changing. I've had depression all of my life but I'd never felt it slowly approaching me like I felt in 2017.

I'd always refused anti-depressants but when this episode hit, everything was different. My depression comes with greatly increased anxiety and my way of coping had always been to self-medicate with alcohol - not so much that it ever became a serious problem, but more than I should have. This time, I needed to be a functioning parent and husband, and I had more responsibility at work: I couldn't just get a beer and tune everything out. So I spoke to my GP and he didn't hesitate to prescribe. It took a really long time to get used to them, in fact the side effects of the first medication I tried were utterly horrible and I went off them immediately. It wasn't long after that that work started to feel really difficult. I had no confidence, no ability to focus and nothing seemed to make sense. I was very lucky to have my own office at that point: for what felt like a long time, I was crying at my desk every single day. 

I now think this was the first clear sign of a full-on autistic burnout. But somehow, I kept going.

Eventually, after talking to a therapist I went back to the GP and tried a different medication. It did help me to focus at work a bit better, which was important: if I'm struggling at work I can't turn off how that makes me feel even outside of work. But the medication also made me feel flat: I wasn't feeling the crushing lows but I also felt unable to get pleasure out of things that might give me those all-important lifts. I started to really dread particular social interactions and it affected how I acted around people. It came to a head in 2019 when I couldn't face the annual 'lads' Christmas do: I never miss that and I had been looking forward to it, but I just couldn’t face being seen. 

Things were getting on top of me at home and I was often to be found hiding under a blanket. It sounds crazy to think of a grown man hiding like that. I didn’t want to disappear out of the house or even shut myself in another room: I couldn’t let myself just dump my responsibilities onto my wife, so instead, I hid myself in plain sight. Regularly.

Then the pandemic hit. I’ve suffered all my life with anxiety so in many ways, I was well-prepared. And staying at home suited me too: a little too much, maybe. Then I had some bad news - or rather, a realisation. My employer, apparently fearing a significant drop in income, froze recruitment and on top of that, froze contract extensions. My contract was in the process of being extended: I had seen my role with my name against it in the departmental budget forecast for a number of years into the future. It was a necessary job and the money was there but I had been made redundant before - twice - and I have a sixth sense for bad news. I had to raise the issue with my line manager and other senior colleagues who were involved and I was told that there were ongoing discussions. I was prepared for, and expecting, the worst.

At that point I had six months remaining on my contract. The western world had been turned upside-down: we hadn’t had to deal with anything like this for a hundred years: who knew what was going to happen or how long it would be before things returned to normal? I was facing a repeat of what had happened to me in the financial crash. This time around, I was in my 40s, with a child too. I couldn’t possibly do that all again and the middle of a global pandemic with thousands of people in the UK dying every week didn’t feel like a good time to be looking for a new career.

No one ever did have the guts to confirm that my contract wouldn’t be extended. When I was asked to start preparing handover documents (handover to whom, you might ask: if the role was no longer required, surely there was no work to pass on?), I pointed out that although I’d been preparing for the worst since I first enquired about the progress with my contract extension, the last I had heard was that it was still under discussion. The gutless response was “As you know, your contract ends next month…” 

Somehow, despite crippling anxiety, homeschooling and still trying to do my job that apparently wasn’t needed anymore, I managed to apply for a couple of jobs. After my first interview, I was informed that I was not appointable for that post due to one very specific criteria that I didn’t meet. As it turned out, when I did get a new job just weeks later, I had to cover another post and in doing so, I immediately proved that I did meet that specific criteria. These kinds of frustrations just serve to fill up the negative weight in my foggy and distressed mind.

I started off ok in my new role: on paper it was very similar to my previous job and I didn’t feel anything was beyond my skills or experience. But quite quickly, I began to make the same old anxious errors. If I wasn’t familiar with something, I either didn’t want to admit it, or if I did ask for more guidance, it didn’t always help. I spent ages trying to work things out and going down one avenue only to realise that it didn’t fit with what I thought I was meant to be doing. I began to lose my ability to focus again and I was getting headaches all the time. I needed to reach out to someone and tell them I was struggling but I didn’t know who. I started working late trying to make it all make sense. I was stressed and couldn’t think straight.

One day, in a team meeting, I let it slip that I was working extra hours, and quickly learned that we must, under no circumstances, let anyone know we’re struggling. My line manager had been picking me up on a lot of small things and I felt like I couldn’t get anything right. That evening, working even later than usual, I hit the wall. I couldn’t do any more: my brain just wouldn’t function. I could barely even speak to my wife to tell her what I was feeling. I emailed my line manager explaining that I was struggling but that I didn’t know why. It was decided that I’d take some time off sick and speak to my GP the next day. I was reluctant: I didn’t understand what was happening to me and I didn’t feel as though a little time off would help.

I now realise that the six months of anxiety, on top of homeschooling, looking for work and then having to learn a new job had resulted in a full autistic shutdown. 

An occupational health advisor suggested I might need a whole year out of work. I didn’t think that it would be feasible to take that long without it impacting my pay - and worse than that, I was fearful that after a year off work, going back would be far too hard. So after six weeks - which seemed to be some sort of limit on sick leave with full pay without further repercussions - I went back to work. I was nowhere near ready, and it showed: a few weeks later, instead of the annual performance review I was expecting, my line manager spent an hour telling me how badly I was doing. I tried to counter some of the criticism but was dismissed as making excuses. I felt miniscule. I was shivering, desperate for it to end. There was no running away from this and I had no one to turn to. My confidence was shot. My mental and physical health were in a sharp decline. But I couldn’t possibly find a new job feeling that way, so I just had to try and carry on. I increased my medication - in the hope that it might improve my focus - and I started working longer hours to try to meet my line manager’s expectations. 

So that’s my autism burnout story. Almost 18 months later, I’m still in the same place. I’ve put on weight and don’t feel good. My medication keeps the worst feelings at bay but also dulls the nicer moments. I’m lethargic and flat and find it hard to feel happy or positive, or even interested in very much at all. I’m tired all the time and find myself struggling to keep my eyes open while my son’s watching TV. It’s 10.36 in the morning and I could quite easily go back to sleep. 

My contract comes to an end soon and I’ve managed to secure another job that will keep me employed on the same pay for a longer period. It doesn’t inspire me but - and I hope I’m right this time - I should have all the skills and experience I need to do it. 

What I REALLY need is a complete change. I want my life back: I want to feel like a human being, rather than a husk hooked up to a machine with the sole purpose of making sure some other people meet the arbitrary targets they’ve been set. 

Unfortunately, I don’t know what else to do. With working full-time and parenting, I don’t have the headspace to figure out how to get myself into a career that pays enough but suits me better.

As with more-or-less every part of life, there is a class aspect to autistic burnout. While learning more about autism, I’ve been listening to other peoples’ experiences and it seems that many people with podcasts and youtube accounts have been able to quit work entirely in order to focus on their health. We’re not poor: I come from a working-class background but admittedly now live a middle-class lifestyle. But we’re really only one bad month away from falling into debt. Family could help in the very short term, I suppose, but I certainly can’t just take a break from working, though that’s really what I would ideally like to do.

Autism at work - introduction

This blog used to be a place for me to share insights into my mental health: mostly as an outlet (as with anything I write, design or compose, I'm usually fearful of sharing in case people think it's crap!). After moving a few posts over from an older blog that covered more topics, I then didn't manage to keep writing: mostly because of the very issues I might have been writing about.

Since then, I've been diagnosed as autistic. To cut a long story short, we were looking into the possibility that our son might be autistic when it dawned on me that I probably was. Inspired by lots of autistic bloggers and podcasters who often say the find it helpful to talk about their experiences, I started doing the same. I find it hard to record podcasts or videos because I'm embarrassed and need time when I'm alone in the house and don't have too much work to do! So I thought maybe I'd start sharing some of the same content here for people who prefer to read rather than listen.

This post is an introductory overview of my thoughts on working with autism. I probably also have ADHD - not diagnosed yet. I think a lot of these points will probably resonate with people who are not autistic but are otherwise neurodivergent.

I may use wheelchair users as a reference point: I am not out to compare the difficulties I face with the difficulties a wheelchair user faces; I just feel that it helps when trying to define our intentions when it comes to inclusivity - and I hastily add now, and continue to suggest that I think we have a very very long way to go on inclusivity of all forms.

To start with, I have some statistics which I’ve gathered from a range of autism charity websites including the autistic society and Autistica.

On average, life expectancy for autistic people is 16 years lower than non-autistic people.

80% of autistic people experience mental health problems compared with 30% in the general population

60% of autistic people have considered suicide and autistic adults with no learning Disability are 9 times more likely to die by suicide than the general population

Historically, studies of the IQ of people with diagnosed autism showed that 44% were of average or above average “intelligence”: so 6% lower than the general population. However, recent studies in the US which incorporated behavioural assessments found that 59% of people who fit an inclusive definition of autism, showed average or above average intelligence. 

In the UK, just 22% of diagnosed autistic people are in any kind of paid employment. We are often unemployed or underemployed - either only working part time or doing a job that is less than we are capable of. I’d like to point out that these terms are not mine and will be reflective of pay or status rather than societal value, skill or potential job satisfaction. Nevertheless, if autistic people are paid less, that is also a concern.

Personally, I don't like the term "raising awareness" when we are talking about things that people are aware of. For me, I’d rather aim to "improve understanding". People know about autism, ADHD and other neurodiversities but don't always understand how the workplace can affect their neurodivergent colleagues. Notice how I worded that: how the workplace can affect neurodivergent people. I subscribe to the social model of disability. Many people recognised as having a disability believe that it is our environments which are disabling to us. The obvious example is wheelchair users and stairs. If buildings weren't designed with stairs, we wouldn’t need to make “adjustments” to "accommodate" people's requirements: everyone would use the ramps and lifts provided. Another example would be for someone with a hearing impairment. I’m providing the full script on the screen here and actually, when receiving information, I prefer it to be written down because my autism affects my ability to absorb what someone is saying: I can make notes but if the spoken details aren’t clear and in the right order, my notes won’t help me. It’s useful to have it written down anyway and as I’ve written this script to try to make sure I don’t ramble and forget what I was hoping to say, it’s no effort for me to share it.

Some weeks before I received my autism diagnosis, the topic of “reasonable adjustments” came up at work. At present, in most workplaces, those adjustments might be, for example, providing noise cancelling headphones, or moving to a quieter office. Those sorts of things might help a bit. But to me, whilst I am affected more by noise and distracting workspaces than most people, they are not the biggest problems I face at work. The biggest issues I have are built in to our systems, processes and methods and indeed the very culture within our workplaces. Systems that don't quite work how they should, so have workarounds bolted onto them. Processes that have to be done in ways that seem illogical to me. Having fundamentally different ways of arriving at the same outcome simply because merging the two would take resources that are always deployed elsewhere. My brain can sometimes see big, logical alternatives to the frustrating methods we employ and the sometimes insurmountable obstacles we create that would benefit neurotypical staff as well as people like me. Although I’ve mentioned some of these ideas to plenty of people, I've never been in a position to get anything done.

So instead, I keep trying to manage. But it's exhausting. I’ve had to develop and keep updating an internal emulator to transcode what's in front of me, into something I can begin to comprehend. I also need to translate the unconscious language and unwritten conventions that my colleagues employ and then carefully shape my thoughts and feelings into actions, expressions and language that is deemed to be "professional" and meets neurotypical expectations. And there's one thing left for me to do after that….I've also got to do the work. 

To an extent, I can do it. For years, I was managing, I think, to handle all of this and complete as much or more work as my neurotypical colleagues to the same or even higher standards. But when I became a parent, my downtime more or less vanished: evenings, weekends and holidays weren’t just about relaxing or doing things I enjoyed anymore. It wasn't long after my son was born that things started to feel much more difficult at work. I was becoming more tired and more anxious. The anxiety and exhaustion made a severe dent in my ability to focus. As I kept on pushing through, it got worse. I put it down to the anxiety and depression I've suffered with all my life and I broke the habit of a lifetime and started taking medication. It helped a bit. Then, my employer decided they wouldn’t be extending my contract and I had six months of extreme worry about my future and our family's finances, followed by having to apply for jobs, managing interviews and then when I did get a new job, I had an intense learning curve. 

I was struggling to find my feet. I’d started off confidently but that was quickly ebbing away. I didn’t feel like I knew what was happening or how I was expected to work. I didn’t understand some of the things I was trying to work on and when I asked for more guidance on something - which I didn’t like doing - it didn’t always help. I was getting more and more headaches, I could barely focus on anything. I needed to reach out to someone and tell them that I was struggling really badly but I didn’t know who to turn to. I’d been working longer hours, trying to make things make sense. I was stressed and not thinking clearly. 

One day, in a team meeting, I mentioned that I’d been working extra hours and this didn’t go down well: apparently I wasn’t meant to use the team meeting to talk about that sort of thing. My line manager had been picking me up on lots of little things and I began to feel like I couldn’t get anything right. That evening, I was still struggling along, trying to force my brain to get through another task, and another. Eventually, with a desktop full of open emails, word documents, spreadsheets and browser tabs, I couldn’t do any more. I remember sitting in the living room and everything had just stopped. All the effort, all the straining to focus and understand had failed: nothing was working; I had ceased to function. I think I was somewhat mute: unable to communicate in sentences. I emailed my line manager to apologise for speaking out of turn and to say that I didn’t understand why I was struggling. It was decided that I should take some sick leave and follow up with some support via my GP that I’d already been waiting for. I was extremely reluctant to take time off sick: I knew that I would be stopping work for a significant period, and not just for a few days. But I knew deep down I couldn’t keep going.

I now realise that I was totally burnt out and that had caused an autistic shutdown.

After listening to me talk about how I was feeling, an Occupational Health advisor suggested I might need as much as a year away from work. I knew that would throw up issues around my job: I didn’t think I’d be on full pay for a period like that and it would pose big questions for me about why I couldn’t cope; what would be any different if I had a year out of work, in fact, wouldn’t I end up more anxious? I was worried I’d lose the capacity for a full time job. So after six weeks off sick, despite knowing I was nowhere near ready to return, I went back to work. 

A few weeks later, I was supposed to be having an annual performance review. What happened instead was an hour-long take-down where my line manager made it clear to me that my work was not good enough. Initially I tried to counter some of the criticism but apparently I was just making excuses and the only thing my line manager wanted to hear was solutions. I was shaking, shivering, my head bowed, silently nodding like a naughty but regretful child. I wanted to run away from it all but of course, I couldn’t. I got in touch with my HR advisor, making it clear that I was just seeking advice and not complaining about my line manager. He assured me that he knew and trusted my line manager and so it must be me that was failing. He suggested I look into some of the training offered by my employer: things like mindfulness and resilience. I felt totally dismissed: even insulted. Clearly, no one was going to help, so I took the decision to increase my medication and to work harder and longer to meet the expectations that were placed on me. My confidence was utterly in tatters, my physical and mental health in a rapid decline: but I didn’t have a choice; I had to keep working. I needed a job that suited me better but I was barely coping with what I had in front of me so there was no way I could find the capacity to start the arduous task of reviewing my career and applying for jobs. 

This was summer and early autumn 2021 - and in February 2023 I’m still in this same place. I’m not getting enough exercise because I simply don’t have the energy. I’m still taking medication to help me cope with work: I don’t otherwise need to take it, indeed the side effects have an impact on my life, making me feel emotionally flat and lethargic. 

I feel it’s important to add that apart from when I was off sick with stress, nothing has actually gone wrong with my work. Everything has been achieved, in fact I’ve received positive feedback and genuine thanks for my efforts, including gifts from colleagues and a thank you letter and gift from the former head of the civil service for some work I’d done on a project he chaired. I reinvented myself in my 30s after my original career collapsed during the financial crash and I worked extremely hard to move from an entry-level admin temp in 2010 to Administrative Officer, Administrative Manager and then Institute Manager in 2016. I’m very hard working, I’m intelligent, I’m a creative big-thinker, I’ve been an adept problem-solver, reliable and honest. My autistic and ADHD brain has been one of the reasons behind my successes…but I’ve reached a point where I have to consider whether I can continue to manage processes and methods which simply don’t make sense to me. 

Our brains are wired differently - that can manifest itself in different ways and cause different issues depending on the person and their working environment - which includes not only physical spaces but also processes, methods, relationships and culture. But for me:

I’m really uncomfortable in meetings. Even if I like the person I'm meeting with: and I like most of the people I've worked with over the last ten years! But they make me so anxious. Interacting with neurotypical people has always been hard for me. People who know me might be surprised to hear this: but it's all an act. I don't even know who I really am. I have to fake everything, otherwise I'll come across as abrupt, blunt, even rude. I would rather be completely open and extremely honest: if something is rubbish, I'll want to say so. 

Here’s an example greeting: 

"Hi, how are you?" 

Reality: "Well, I found it hard to sleep last night worrying about work, and I woke up with a stiff neck and back. And I’m worried about my son: he’s clearly anxious about something but he won’t talk to us. And my contract expires in a few months and applying for jobs and learning new jobs is a really horrible experience for me but I need to pay the bills. We need to find the money for my wife to get root canal surgery. I’m not getting any exercise because I’m too stressed and tired and my clothes aren’t fitting me anymore and I’m halfway to 90 and really worried about my physical health. And I keep forgetting to ring my Dad. And we’ve got that mould problem in the house again and there’s a smell too: I think a bird has died and fallen down the chimney. And we’re supposed to see some friends this weekend but I don’t feel up to it and one of them has some wrongheaded opinions that I want to argue with them about."

Of course, I don’t say that. What I actually say is: "I'm good, thanks, how are you?" 

Here’s an example question:

"How did the event go?" 

Reality: "My previous meeting overran and I didn’t have time to go to the toilet so I was uncomfortable the whole way through the event. It was pouring with rain and I got wet feet on my way to the venue. Then the speaker really wanted to use their laptop, only the HDMI connection was no good and we lost 10 minutes at the start trying to sort it out. I also had to tidy the room before we started but I might as well not have bothered because of the 60 people who registered, only 20 attended and 15 of those were online. Then my laptop crashed and we lost the zoom connection…"

My actual answer: "It was really good, yeah." 

Unexpected changes to priorities are really hard for me and they happen CONSTANTLY. My brain maps things out in a logical order but our systems don’t always work that way. Often we actually have to make sure one part of a task is done first before we can start something that logically comes before it, and my brain does its best to reject that. Some things I need to do involve doing something one way and then going back to edit it, rather than just doing it correctly the first time. It causes me enormous frustration, every time. 

Insecure work makes me really anxious. I’m always trying so hard to do my job well and it takes so much effort to start to feel vaguely comfortable with the role and the people I work with that I don’t want to be forced to leave. But I haven’t had a permanent role since 2014 and I had to leave that one because I needed more money to buy a house before my son was born. 

There are sensory issues. All office lighting is too bright for me, but I’m in a shared office and most people find the light coming through the windows is inadequate. Then there are people standing outside the office talking noisily. There’s always construction work going on. I have to speak to strangers if I want a coffee that doesn’t taste like hot mud and sometimes, there’s no decaf, or no oat milk, or they put that really sweet oat milk in. For some reason, the wall next to my desk vibrates really loudly and noise cancelling headphones don’t work for that. When other people in the office are at a comfortable temperature, I’m too hot. I don’t like public transport: it’s not very clean or reliable and I have to stand or sit too close to other people. I can’t drive, though, so I have no choice (to my brain, everything is a hazard and although I can actually handle the vehicle perfectly well, it doesn’t feel natural to pilot 2 tonnes of steel and plastic around a built up area). I could cycle but there’s no cycling provision and I don’t trust rush hour drivers. I like walking but it would take me two and a half hours.

I think this is a really difficult time for neurodivergent people at work. Employment is insecure. A lot of people are self-employed which is more stressful because you have to do extra work, such as selling yourself to prospective clients, filling in tax returns, you probably need insurance, you need to budget for possible sick leave, set up a pension, chase up unpaid invoices, maintain things you need for work, like your car or IT equipment… Employers are often under pressure too and although they may want or even need to support staff for whom the environment causes great difficulties, all they tend to offer is training sessions in coping and resilience. They wouldn’t train a wheelchair user to drag themselves up the stairs. 

I’ll put it plainly: I have been working full time since I was 21 years old. Before that I worked part time and was in full time education. I know how to cope: but I have limits. Limits that won’t be extended by someone showing me yet another way to organise myself, or how to take notes. 

So please, employers, take note: trying to “fix” neurodivergent people will not make your workplace inclusive.