Hi, I was diagnosed almost a year ago & have told a few people about my diagnosis - with mixed results. I was wondering what other people's experiences were before I decide to tell any more people, especially at work. I'd love to here what happened when other people talked about their diagnosis - good or bad. Thanks
Think it's the latter - trying to fit into the NT world means anticipating, planning, rehearsing, performing, self-monitoring, analysing and reviewing every interaction. No wonder it's exhausting! Past experience tells us we're probably not safe, so we're often in hyper-vigilant mode. But however hard we try we always seem to get things very slightly wrong.
A colleague in a new role might say something 'friendly' like: "I'm going to sit you down over a cup of coffee and find out all about you." Instead of an invitation to a pleasant social interaction this feels like a formal interrogation. "We're all going for a drink after work, do you want to come?" has a similar effect - I quickly calculate the personal cost of accepting and the social consequences of declining.
It's easy to feel isolated and deviant when you hear colleagues having hilarious conversations with each other about non work related stuff. Trying to join in with this is extremely difficult and probably futile. If there are other task-focused people in the team you may find someone to connect with in an authentic way. If not it can be a very lonely existence.
Employment in a more neurodiverse environment is definitely less stressful from my experience. Working from home and/or having access to quiet, private workspaces should be standard adjustments for all autistic people who need these. Such a long way to go...
It is exhausting, and I don't think people realise how much fatigue is caused by masking, or as a knock-on effect of the anxiety provoked by the things that give us trouble (e.g. sensory issues). I think what really brought the latter home to me was when I was trying to explain to my best pal my lack of gate system for noise and chatter - my stupid brain just tries to attend to everything at once, without respite, and that is exhausting. He said that when that happens to him he just "shuts off the input" for a while. It was rather a revelatory moment for both of us I think, as I realised that I can't shut off the input, there is no off switch, and he contemplated what that must be like.
Anyway I digress ..... I told the boss at work, mainly because I needed to ask for more homeworking as the effects of sensory overload and its attending exhaustion from my commute had left me about 2 days away from complete burnout. I said he could tell the team leader, as I thought it would be unfair for him not to know why I was being allowed to work from home more. Also for things that are a problem in the office (noise distractions, people spraying stinky perfume about ...) it is helpful that he knows why it is a problem for me.
I've only told one person there who didn't actually need to know, and that was more a case of it coming up in conversation. He'd probably qualify as a bit unusual too, so we hit it off right away. Telling him has made no difference to our working relationship, he just joked that I "wear it well" and that I am not the first person on the spectrum that he's worked with (I work in IT), so he wasn't too surprised. I am not sure how the others would react though, so although it's certainly not a secret and I would happily tell people about it, it's not something I broadcast to all and sundry either.
"Life and work is exhausting" is such a good description of being autistic. I am only just beginning to understand the huge demands of wearing the mask and winging. Now that I am learning about autism from autistic people I'm realising how stressful everyday events can be.
I used to be mystified by colleagues who could go out socialising after a day at work, or not become stressed if someone called at their home unannounced. I've spent such a long time thinking I was lazy, disorganised, unsociable, oversensitive - basically just inferior to all my colleagues and relatives.
Perhaps one of the hardest things of all is to be misunderstood. I'm going to think carefully about sharing my diagnosis at work, if and when I get one. My Union rep has suggested I would be obliged to tell my managers if I am autistic. It would be helpful to know how other people have handled this.
Diagnosed in March 2018. Still haven't told colleagues, apart from managers and HR who need to know due to the process of requesting adjustment (largely a waste of time but that's another story). I am still very worried about telling people, but they need to know, because I think some of them assume I'm lazy / antisocial / all the usual blah blah, when none of those things are true and I wear myself out probably doing half the work of some colleagues, but do the best within my capability (as much as I can process; when my brain is overloaded , its overloaded and I need to recover or I'm no use to anyone with my jumbled scattered brain. Sorry I digress; my biggest fear is that I suspect some colleagues will have a cynical attitude; you know.. 'fashionable diagnosis bandwagon'.. very upsetting when you've struggled / winged it / masked / barely coped with the expectations of 'normal' all your life. Some I think will not be surprised. Its not just the fear of how they'll react, its also that quite a few people just don't really understand what its like and how hard it is. I really shouldn't be worrying so much about it; this is who and what I am; not like I've done something wrong or have anything to be ashamed of.. and certainly not as if I'm 'swinging the lead' ; the opposite is true, life and work is exhausting.
I'm wary of telling people - I've had a very mixed response - mostly bad.
Family - narcissistic sister - used as a bullying tool. My brother doesn't care but his wife is an attention-seeking fruit-cake - declares herself autistic too (can't be out-done).
In-laws - bullying tool to try to manipulate my wife & daughter.
Work - career suicide - suddenly seen as as an unpredictable hot potato even though I'd been there 12 years already and was out-performing everyone in the department. Used as a bullying tool.
Friends - mostly ok - about 10% suddenly treated me differently as though I'd lost 50 IQ points.
I've told a few friends and colleagues. The reaction is mainly disbelief. The most polite comment was "you wear it well" but others have been more dismissive. Given what I went through to arrive at the point of a diagnosis, I was somewhat hurt by this. At the same time, I was also quite pleased because I have had 60 years to learn how to behave amongst the NT and obviously I do a good job! But I'm cautious about it, without being massively secretive. I have one autistic colleague with whom I have discussed openly.
I am very open and casual about my autism at work, but I am in an environment that I think facilitates that (education, so most staff are at least vaguely familiar with autism to start with due to the pupils).
Pretty sure I have outed myself to at least a handful of colleagues just using “we” in a conversation where it came up.
I have found at work and socially (again, I move in autism friendly circles; organised geeky-themed social groups) that if I am very matter of fact and secure about it it just seems to be taken as “not a big deal” by those around me. I can count the exceptions on one hand; I no longer associate with those people. Win-Win!
But yes, it’s a very personal decision and you might meet more resistance in your environment. If you are in a workplace that is less autism-aware I would prepare to do a lot of shooting down misconceptions if you do “come out”.
