Why are you always so exhausted? The impact of masking autistic traits.
Why are you always so tired - you must have an amazingly busy social life?
That's a question I got very used to be being asked, and no. My social life is... well lets say it's on the quiet side!
I used to be the one who just vanished from social events and went home to bed. In my late teens and early twenties I could literally sleep an entire weekend away.
And this continued. And with the exhaustion came regular illness. Winters mean't a constant cold from October through to spring. Ear infections. Throat infections. If there was a bug going around, you could guarantee that I would get it. And it lingered. This pattern began in childhood - it's always been there. If you are constantly tired your immune system just fails.
However things escalated in my 30's - it was a grim decade for me. Constant exhaustion. Poor liver function. Joint pain. Extremely itchy skin and skin rashes. IBS. Depression.
Looking back it was probably chronic fatigue syndrome. But I just kept going. You can't keep taking time off work without some kind of diagnosis. I became habituated to spending my free time sleeping, when I could. So my life was work and sleep. Think about that. How would that affect you?
My health slowly improved. I learnt to avoid certain foods, to cut out the coffee, walk in quiet places whenever I could, practice mindfulness. But the fatigue remained. Always there.
Then in my 49th year I got one of the best presents in the world. After almost a year of questionnaires and phone calls and meetings with clinical psychologists, the Suffolk Adult Autism Service gave me an Aspergers Syndrome diagnosis. It was the best gift ever!
That was eighteen months ago now.
It has been a profoundly positive experience. But I must confess that I am now angry.
Masking of our autistic traits is common amongst those with high functioning autism. High functioning just means our language development was not delayed. We are not all savants!
But masking is exhausting. Imagine pretending to be someone else - every single day. All of the conversations you need to plan out first in your head. All of the social situations where you need to constantly check your behaviour, remind yourself to make eye contact, ask people questions about things you have no interest in. All the while coping with the other aspects of autism, like sensory overload triggered by a world designed for the neuro typical.
I've spent my entire life pretending to be someone that I am not, and this is exhausting. I've masked my autism - without knowing that I am autistic. OK, I don't think anyone who knows me is going to class me as entirely normal. Eccentric perhaps? Or maybe just a bit odd or weird? However nobody, and sadly I'm amongst this group, knows who I really am.
I'm learning. Slowly. But as I said. I'm angry.
I'm angry because I would like to be able to say that now, if I were an autistic young adult looking to enter the information technology industry, that I would no longer need to mask who I was. That I would be able to retain my identity, and still thrive. I would like to be able to say this. But I cannot.
In many ways the technology sector is a worse environment for the autistic than it was twenty years ago, when I started my first role as a systems analyst. Even with more knowledge of autism, things have got worse for the autistic.
Back then, many people worked in information technology because they loved it. They loved understanding and solving complex problems. They were very focused on making whatever it was they were doing better. The geek stereotype existed because in many cases it was true. We worked in the technology sector, because we loved it, and to me it felt like coming home.
Now our world is dominated by the good communicator. The people person. The team player. The person who can dominate a meeting. The person who can sell themselves, even if they have little in terms of skills and knowledge to sell, and few if any original ideas. Listening is out weighed by a need to contribute - even if you have nothing meaningful or useful to contribute. There is no longer a focus on using technology to make things better - the focus is on self advancement.
Our working environments are more and more open plan. Meetings at your desk, telephone conferences from your desk, constant noise and disruption.
Our roles are less and less defined.
This is not an environment where an autistic person will succeed, not without significant masking. And when I say masking, what I mean is pretending to be someone that you are not. Giving up your identity.
How would you feel if you had to give up aspects of your identity? How would you feel if you had to pretend to be someone that you are not? Every, single, day.
And the cost of constant masking is significant, and the impact profound. As dramatic as this sounds, it can literally kill you.
I'd be very interested in hearing about others on the spectrum experiences in the workplace? I sadly do not expect a huge response because:
- Only 16% of the autistic community in the UK are in full time employment. 16%. That's shocking, and the lowest percentage of any disability group.
And the autistic suffer as a result of their exclusion:
- The autistic die on average 16 years before the non-autistic.
- The suicide rates for the autistic are significantly higher than for the non-autistic.
- Rates of depression and anxiety amongst the autistic community are horrific.
What is needed is a working environment that enables - not excludes us completely or at best forces us to give up our identity - at great personal cost.
So if you have some positive news please can you share it?
There have to be employers out there who get it? There have to be employers that realise that if you need new and novel ideas, then the best people to have working for you are those who don't need to think outside the box - because they already live outside the box! I spent the best part of fifty years trying to live inside the box - it's really not for me!
I've added some links below to some interesting (and quite depressing) reading - please try and cheer me up with some good news!
The opinions expressed here are my own views, and not those of my employer.
Autism Diagnostic Service (Suffolk)
“Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions
Autism Masking and Camouflaging
Why do so many autistic people die before the age of 40
Rates of suicide “worrying” among people with autism, say experts
Linux System Administrator @ Danish Business Authority | ITIL, DevOps
3 年I know I know, this is a old post.I'm about where you were. I'm almost in the 40'th and I'm tired with tired on the top and sides.I've been diagnosed for a year and a little.You put the wording just right so it resinate with me. I'm not there yet were I'm not exhausted all the time but I'm still learning.I now know that I need to minimize my masking, but stopping something you're done all ones like is easyer sad then done.The biggest issue I have is getting my environment to understand and accept it. Even here at home with my wife and kits are not easy. Still I see a move in the right direction.But as I've told my wife. If you're a runner and do marathon often, a marathon is easy, but do one, every single day for a year or so youWill fall...It's how I see it, I can't keep masking from I get out of bed till I hit it again... Something will give...I'm glad that you wrote this and being honest. We need it out there and accept. We all have something to offer, and we do not all need to be extroverted and social as it seems to be now a days in IT.We need the geek to :-)
Talent Acquisition Partner (via AMS) - Bristol Myers Squibb UK & Ireland
6 年Ed Dupree that is an absolutely fantastic article. I wouldn't say I am autistic, although I can see of the aspects in myself, I am a typical introvert. I listen, I analyse, I consider all the information and then I *may* contribute but this is never something I feel comfortable about doing. I often sit there and consider how many words are being used to say absolutely nothing, adding *no* value whatsoever to a meeting or training session but I don't feel smug about those things I do share because of the amount of thought and consideration that goes into any contribution. It's exhausting. My role, in an open plan office, involves a lot of communication with candidates, clients and colleagues. I'm a great believer that a phone call is better than an email and face to face is better than a phone call. That said, the buzz of the office, the talking and the listening leave me feeling completely worn out. I've always played sport, I've run marathons and an ultra, I've had Chronic Fatigue Syndrome; I know what complete exhaustion feels like but some days, nothing comes close to how I feel when I get home, close the door and my mind has a chance to settle. The relief but also the need to sit and just be still in complete silence. Thank you again for sharing this
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6 年Wow this really spoke to me. I was diagnosed with Autism 4 years back. I work in sales so masking is just an everyday part of life. There is an incredible amount of effort that goes into just being 'normal' so you don't weird people out. I can maintain eye contact, I can do small talk, I can use hand gestures and speak about regular subjects...but it is all such a huge effort.? The urge to look away when talking to someone is almost overpowering and I'm constantly fighting it. I have to plan out everything I say to colleagues well in advance, with back up subjects and strategies in case I falter and end up waffling on like a halfwit about one of my special interests. I have to remember that my arms and hands are for talking too and concentrate hard on what gestures, tone, expressions and hand movements I should be using. The work Christmas party this weekend was horrific. So much light, sound, smell and having to do all of the above but to several people all at the same time whilst being assailed by a wall of light and sound. I find I can extend my endurance for half an hour longer by just looking at people's feet. Which isn't very socially acceptable. It's like being in an artillery barrage for 3 hours. When I get out of work my mind turns to a thick sludge. No thoughts come, just an exhausted numbness. My wife wants to talk to me about her day, my day and what the kids are doing. All I want to do is make the noise stop, just for an hour or so. That being said it has its perks. Sort of. I'm sure I wouldn't be where I am without it. But so tired.
Senior Talent Partner at Moxie People - Charity, Support and Children's Services
6 年All employers/managers need to read this.
Great article