Hello, and welcome back to The Autistic Writer. So, I’ve had a difficult week. After publishing last week’s blog, I started to feel a little unwell. I took a lateral flow test, which was positive. I followed this up with a PCR test, which also came out positive. Yes, I’ve got covid. I’m triple jabbed with the covid vaccine, so I’m guessing that my symptoms would have been much worse had I not had this protection. And yet, I am genuinely unwell. I mention this not for sympathy, but because it relates to my autistic experience. You see, I feel guilty for being unwell, and the reasons for this have everything to do with living most of my life not knowing I was autistic, and unconsciously masking with aggressive intensity. In this week’s blog, I’m going to explain how autistic masking is both vital and dangerous to autistic people, leaving us between a rock and a hard place.
Autistic masking is complex, and to cover all its detail properly would need a book of significant length. In this article, I’m covering one facet of autistic masking, although much of what I have to say will overlap with the many varied experiences of masking and burnout experienced by autistic people.
For brevity, then, I’ll give a short definition of autistic masking: Autistic masking is what happens when autistic people adopt behaviours that do not come naturally to them, and which usually feel uncomfortable or distressing, in order to achieve a given effect. The behaviours may be active (specifically doing a certain thing) or passive (restricting or denying a preferred behaviour). Autistic people sometimes carry out masking deliberately, making a conscious decision to behave a certain way in certain circumstances. Autistic people may also adopt masking behaviours unconsciously, gradually building up through trial and error a library of behaviours that help them get the desired result. Usually, the desired result or aim of masking behaviour is to be able to fit in with neurotypical culture. Unconscious making is particularly common among autistic people who have not yet realised they are autistic, but find themselves having to work hard to fit in. All masking is hard work for autistic people, to some degree. In fact, over time it leads to exhaustion and mental trauma. Autistic burnout is the common long-term consequence of autistic masking.
I specifically want to talk about how unconscious masking over extended periods of time can be dangerous for an autistic person who does not yet know they are autistic. I’m going to lean heavily on my own experience here, but I’m confident, having compared information with so many other autistic people, that my experience will resonate with many adult autistics who were identified after childhood.
I’ll start with some quick autobiography, then. I received an “official” autism diagnosis at age 54. I had been on a waiting list for my autism assessment for the previous nineteen months. A few weeks before being referred for an assessment by my GP, a very helpful occupational health doctor had spotted that I was autistic, and suggested I get my own GP to refer me. In truth, I had first thought I might be autistic (or Aspergers, as I thought of it back then) shortly after my 50th birthday. I had been going through an incredibly difficult time with my mental health, and had started to acknowledge that I was fundamentally different from pretty much everyone I knew. I still don’t know where I dredged up the word Aspergers from at that point, because I knew absolutely nothing about autism. I vaguely associated Aspergers with autism, which in turn I vaguely associated with the movie Rain Man. I decided I was being silly, and dismissed the idea for two years until that occupational health doctor, who coincidentally had a background in autism, explained to me why I was struggling to deal with phone calls.
The reason I had dismissed being autistic was partly down to ignorance, but also down to some ingrained ableism. I felt I couldn’t be autistic (which I was still associating with Dustin Hoffman’s character in Rain Man, I think) because I was a father, a successful manager, I had a degree in English Literature, I’d had loads of girlfriends, I was now married and settled down, I had written a novel, I had friends, I could drive, etc, etc. How could I possibly be… that… Aspergers or autistic or whatever? I had been functioning in life, right?
Clearly, it is the height of ignorance to assume, as I did, that autistic people cannot live the kind of life I’d lived, or any other type of life. However, one thing I had not considered was how difficult that functioning had been. Yes, I had started to realise there was something very different about me in comparison to almost everyone I knew, and yes, I knew I was struggling badly with my mental health… but I had not linked either of those issues to the gargantuan effort I’d had to put into functioning in the neurotypical world. The reason I was not acknowledging this effort is simple: Other people’s expectations. Which brings us to masking…
I had found out the hard way in childhood that being the real me would only lead to being ostracised, ridiculed and bullied. By the time I hit my teens, I was fighting back, and became the cool, rebellious kid, and a bit of a man’s man; cue getting into fights, having a constant stream of girlfriends, drinking huge amounts of alcohol, getting into football, and so on; all highly aggressive masking behaviours. My more natural, nerdy instincts never went away, though, and people who got to see more than one facet of my personality were bamboozled by the contradictions they encountered. When I became a parent at a young age, and had to think about my responsibilities and get a decent job, I somehow landed a management position. How I got this job with such little experience speaks volumes as to how successfully I could mask, and sell myself. But now in this new, high-pressure professional environment, I had to learn a new set of masking skills.
I quickly learned that trying to be the cool guy in my job wouldn’t work, as I was in the company of some huge neurotypical egos who had strong networks around them. I had joined as an utter outsider with everything to prove, and none of the natural social skills my peers were relying on. In terms of ability, I found I was okay. But in terms of networking, and engendering loyalty and trust, I was way out of my depth. It took a long time for me to find the right kind of people whose behaviours I could successfully imitate in order the make social progress in the workplace. Words cannot express how difficult this process was for me. Still decades away from knowing I was autistic, and having developed a bit of an ego of my own, I found the work of trying to fit in hopelessly exhausting. At this time in my life, I was refusing to believe there was anything different about me. I was compartmentalising all evidence of my differences, and building an internal narrative that comforted me. However, there was something I could not ignore…
All through my adult life, I’ve regularly felt unwell. This has often been due to gastro issues and IBS, although for a long time, I didn’t know what to call it. Worse though by far were my periods of anxiety and depression. I would sometimes have to take sick time from work to recover, and I was painfully aware my attendance record was poor compared to my peers. Sickness was looked down upon in the company. If you took time off sick for anything less than cancer or surgery, there seemed to be an unspoken assumption that you were faking your sickness. You were seen as weak, and often ridiculed. If word got out that you were off work with a mental health issue, you became Schrodinger’s Malingerer; simultaneously derided as weak for being depressed, and a liar who was faking depression. I experienced some of this abuse.
What these people who were ridiculing me didn’t know, however, was how often I came into work feeling absolutely awful, struggling to function, completely at the precipice of my ability to cope any more with trying to fit in and continue through catastrophic mental exhaustion. They didn’t know because I covered it up so well… often with aggression. I internalised the insults about being weak or a malingerer, and reacted against them by masking ever more furiously, continuing to push myself when I’d had enough. I had to do this simply to hold onto my job and keep a roof over my head… and more importantly, my son’s head. This is something neurotypical people often don’t understand about the daily struggle most if not all autistic people face: We don’t have a choice. We lack choice because we cannot choose a different world to live in. Masking becomes an essential survival tool.
My constant masking was not sustainable, and so I would suffer what I now know to be interim burnouts, which inevitably meant I would be off sick again. Sometimes, my hard work would result in actual physical injury, too, such as recurrent back problems; something else decried in the workplace as malingering.
My increasingly strenuous efforts to ignore and mask how badly I was suffering, and the inevitable interim burnouts I suffered, caused permanent damage to me, resulting in a catastrophic, life-changing burnout that saw my life begin to implode in 2015, until finally I totally broke down in 2018. It is true to say that I have never been the same since. It was the depth of my despair in 2018 that led to the meeting with the occupational health GP who listened to me so carefully, actually understood what was driving me, and suggested I get referred for an autism assessment. I will always be grateful to him.
Unfortunately, the decades of trauma I experienced from trying so hard to fit in with other people’s expectations of “normal” has caused permanent damage to me on numerous levels. One facet of that damage is that there is always a voice in the back of my mind that associates illness with weakness and lying. I fight back hard against that voice these days, but it never goes away completely. And that is why, when I started to feel ill a few days ago, I thought I must be imagining the symptoms; there was no way I was really ill – I just needed to man-up. And I could prove that to myself by doing the lateral flow test, which would be negative, of course. Except it wasn’t negative; it was positive. At this point, the accusatory voice at the back of my mind insisted it was a false positive, and a negative PCR test would clear it up. But the PCR test was also positive, and by the time I got that result, I was feeling even more unwell. Even then, that voice was trying to tell me the PCR test was wrong, but then I got the call from test & trace confirming it. Even that wasn’t enough for the voice at the back of my mind, as it was still telling me I didn’t really have covid, I was just making it up. I’m still testing positive, though.
With all this in mind, I still feel guilty for having covid, and not being at work supporting my colleagues. So deeply have those years of trauma impacted me, that I’ll keep hearing that nasty voice in my mind in spite of all the evidence of my senses and science. I mentally and emotionally associate illness with shame, having internalised all the ridicule that has come my way in the past when I’ve pushed myself too hard, masked aggressively, ignored the danger signs, and burned out as a result.
For neurotypical readers, I would say this. If you are finding life easy, you can be sure that an autistic person in your circumstances would be finding it hard. If you are finding life hard, then an autistic person in your circumstances would find it unbearable. We autistic people live like aliens in your world, and fitting in exhausts us, burns us out, and inevitably results in mental health problems. This is in addition to the physical health problems that many of us find co-occurring with our autism. To assume we are weak when we take time out to deal with our health is to grossly underestimate the strength we have brought to bear just keeping our heads above water.
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That’s all for this week. Until next time, take care.
Darren
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Why Do I Write This Blog?
When I first found out I was autistic, I was a middle-aged adult and I knew nothing about autism. I quickly learned that there was a serious shortage of information and resources for adults in my situation. With this blog, I aim to inform about autism and autism-related issues as I learn, hopefully helping people who are on a similar journey of discovery. Like anyone who writes a blog, I want to reach as many readers as possible; if you like what I’m doing, please share it with your friends and followers. I will never hide this blog behind a paywall, but running the website does incur costs. If you would like to support, feel free to make a small contribution at BuyMeACoffee.Com.
You might also be interested in David Scothern’s blog, Mortgage Advisor on FIRE, which covers a range of topics including mental health issues and financial independence.
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