Masking impacts all autistic people to some degree, but those who tend to be able to Mask better, appear to be those who can hold down employment, at least for a period of time anyway.
I will never, ever deny that Autistic people have huge barriers in entering and remaining in the workplace, but I often take figures like this with a pinch of salt.
Well, firstly, any figure which tells you that xxx amount of Autistic people are unemployed is guesswork built on a sandy foundation.
To start with nobody knows how many Autistic people there are – nobody is counting us and even if they do, I’d hazard a good number of people wouldn’t put their hand up?
Well there’s a big history of Disabled people being put onto lists. It kind of makes us mistrustful of them…
Also though, none of these figures ever take into account the number of undiagnosed people – either the missed, or those who have chosen not to seek diagnosis. Nor those who flourish in their working environment so wouldn’t likely ever need to fill in a questionnaire asking them about their negative experiences.
The other point to consider is that figures like these often don’t take into account how co-occurring conditions can play a part in this – that there are Autistic people with higher care needs or separate Learning Differences and that the figures can be skewed by them. This is something shown up in the NAS percentages because of the amount of respondents that are parents – which makes one question if the parents are filling out the questionnaire – why then is the Autistic person not?
I don’t highlight this to separate Autistic people with higher care needs – but the question arises that if an Autistic person with lower care needs faces employment barriers – then it stands to reason that those with higher care needs will face bigger barriers and even the question as to whether the workplace is the right and safe environment for them to be in – obviously something that needs to addressed in a case by case basis.
Not to mention in all of this the number of Autistic people who wouldn’t touch a National Autistic Society questionnaire if you paid them. Myself included.
As I said, context is fundamental in these conversations and it is often lacking.
There ARE huge barriers to employment for us. Even before the job itself, even before we’ve been scuppered by the interview because of our different communication styles, even before we’ve zoned out filling in the application form or perseverated over the exact meaning of a particular question which could have multiple responses or only gives you two lines to answer.
Before all of that is the biggest question.
Do we disclose or not…
I’ve written previously about my experiences of disclosing in the workplace. In An Autistic Diagnosis I described in graphic detail how I told an employer and the reaction I got.
I’ve also written in An Autistic Burnout my experiences of how disclosing my Diagnosis became an utter irrelevance to my employer
It changed nothing – at those points in my life, I didn’t really know what accommodations were needed, plus there was a part of me that felt like a fraud – I’d hidden the real me for so long that I didn’t want to put this version of myself out there that I didn’t fully understand and make myself look even more foolish, not to mention there was that compliant, eager to please version of me, that found the thought of putting anyone else out of their comfort zone abhorrent…
“Of course you can bounce your leg so much your desk will jump across the room!”
“Of course you can stand up and do a little jig every five minutes!”
Why is that?
Is it that it’s true, Autistic people can’t hold down jobs? That Autistic people are too busy being failures in their lives to reach a position where they can actually make a difference?
Or is it, that along with the many undiagnosed and unaware Autistic people in those careers that there are actually a whole load of Autistic people who are, rightly or wrongly, terrified to ‘come out’ terrified to disclose, because the possible repercussions are… scary.
Between my experiences and those I’ve heard through the years and, as a kind of companion piece to to last community made article I put out exploring Masking and Mental Health called ‘We are not OK‘, I decided I wanted to collate other people’s views, other people’s stories of Masking and Disclosing at work. I wrote in that piece:
This piece is another aspect of that.
As I mentioned before, the relationship between Autism and work is curious, but it’s also intrinsic. We as humans often define ourselves by ‘what we do’, or how we ‘make a living’ – but there is a huge subsection of society that is being crippled by exactly that.
If we cannot ‘do’, or at least ‘do well’, then there is a fundamental part of ‘living’ that we are excluded from. Society makes judgements on us based on that, people makes judgements on us based on that.
So what do we do?
We work harder.
We Mask harder.
And we break.
Most of us anyway.
So that is why this article exists, to share the voices of those that would not normally be heard.
To give a flavour of what life is like for an Autistic person in the workplace.
To see Autism at work.
I put out a call for other people’s experiences and lo did i receive answers…
Some are short, some are incredibly detailed and there are some that frankly scared me. There are those that made me feel hope and those that genuinely hurt me.
The Author is very clearly scared, not scared of unMasking as such, more scared at the lack of recognition they will receive.
Scared at no longer being seen as them:
I’m a health professional. I work across two hospitals, and within teams of dozens of people. I meet many different patients every day, all of whom are experiencing trauma, illness, disability and a sense of profound vulnerability. My colleagues and patients both expect me to be calm, knowledgeable, encouraging, professional, and quick to analyse the situation and respond with an appropriate plan. I need to delegate components of that efficiently and effectively, and I need to be constantly reviewing and monitoring the situation for each patient and anticipating the next steps. I often need to drive between five different sites (the two hospitals and three community clinics) and so frequently find myself driving 100-200 km in a day.
I am doing a clinical research doctorate on top of this.
I have a husband and two young children, and have been involved in community work for the last 20 years – youth work, food bank projects, mentoring etc.
You’d have thought that I would be secure in my sense of success. You’d have thought that my life is fairly open and honest. You’d have thought that I have friends who know the real ‘me’ and that I can relax in the presence of my family.
But I’m an impostor in a professional world.
But surely autistic people don’t work in professional roles in busy places like hospitals? Surely working in a constantly over-stimulating environment is a recipe for disaster! Surely working in complex communication situations is not a good idea for someone with a diagnosis involving a communication impairment? Surely we would be able to spot someone who’s autistic?
I have a mask. And it’s a good one.
It’s taken me more than 30 years to mold and shape.
It’s such a good mask that people don’t even know it’s there.
It’s such a good mask that even the people who know me best, forget that it’s there.
It’s such a good mask that no one can see behind it.
And it’s such a good mask that sometimes even I forget that it’s a mask.
One of the problems is that sometimes we live in an ‘us’ and ‘them’ world. Health professionals and patients. Teachers and students. Politicians and their constituents.
But life isn’t that simple. Politicians are also constituents – they still need their rubbish cleared, to have playgrounds and schools for their children, to have ways of travelling to work and taxes to pay.
Teachers can’t know everything all the time, and health professionals have health needs; They break bones, get sick, take medication and need to see health professionals on their own behalf. And sometimes we hide our differences and our challenges because we are so frightened that they will be seen as flaws. We’re so scared that being different will be seen as being wrong. We’re so terrified that we will be found to be ‘not good enough’ even when we’ve shown that we are.
It’s exhausting to live this way.
I script every conversation in my mind. Every turn within a conversation. I spend hours planning every eventuality for the interactions I can anticipate for the next day, just so that I can try not to make any mistakes. I agonise over word choice so that I’m not misunderstood or misinterpreted.
I study policy documents and procedures in detail so that I understand what to do and how to do it.
I organise my day as best as I can because I’m scared I’m going to forget to do something.
I’m careful with what I wear so that it’s comfortable, doesn’t irritate me, doesn’t get in the way, is appropriate in multiple situations, and leaves no room to offend.
I have developed ways of keeping calm (stims) which are discreet and can be explained away as something else.
I agonise over approaching people for normal every-day conversations or what to talk about over lunch.
And what of the unseen…
The times I sit in the car and cry.
The times that I go to bed at 7pm because I’m too exhausted to talk to my husband when he comes home.
The times that I go to a social event that I really want to go to, only to find I’m paralysed by anxiety and unable to join in (or even walk through the door).
The times this happens and I have to see the look of confusion and disappointment on the faces of my husband, and children.
The times I hide in the bathroom at work to calm my anxiety and fix cracks in my mask.
The times I walk down the corridor holding on to the walls because I can’t even cope with the patterned carpet.
The times I’ve cried over mistakes I’ve made misinterpreting what someone has said, or taking something too literally (it nearly cost me my research).
The fear of receiving a call from my boss who just wanted to check something or update me, but who I’ve convinced myself is going to tell me I’ve been fired.
And when this all gets too much, I end up with stress-related illnesses, which no-one can understand, because I don’t really come across as stressed (‘well, no more than usual’).
Because this is the natural stress level of every waking moment of my life.
This is my normal.
I don’t know what life would be like if it wasn’t like this.
Because I’ve never known anything else.
I’ve always been autistic.
I’ve always lived in a world where I’m not seen as autistic.
I’ve always lived in a world where my mask is essential for my survival. And I don’t always know who the ‘me’ is underneath the mask – the quest for my own self-identity is on indefinite hold because any time the mask isn’t there, I’m not seen as ‘me’.
And I think that is the most scary thing of all.”
I asked six questions of Autistic people. All responses have been made anonymous by me, even when respondents have stated that they were happy not to be anonymous. The reason for this is simply that I think it’s a safer option. I don’t wish for anyone to be identified and lose their job because I’ve published something they have written. I don’t want that responsibility, nor do I want anyone to be hurt because of this.
All responses are genuine and very, very much appreciated.
1. Have you disclosed that you are Autistic in your workplace? If yes, why? If no, why?
“I’m a medical student close to the end of my training. I was required to disclose my diagnosis prior to starting medical school, and in the first months of my training experimented with unMasking a little…”
“Yes, but had to find the right job so I could disclose before being hired.”
“No, because I’ve never worked in a job where I actually have to be around people. Through my life I didn’t know I’m autistic, but felt intuitively that I couldn’t keep it up, spending a few hours at university in an office with people wore me out completely, so I sought distance jobs.”
“If I ever find work again I don’t intend on masking.”
“I have disclosed to my Line Manager as he raised some pertinent points in my last Appraisal and I had a feeling he would be ‘sympathetic’.”
“No. Although I work for a large multi-national bank that actually sponsors job fairs for autistic people, the division I work in—the wholesale brokerage—is extremely competitive and filled with abnormally (for the rest of the world, but normal in this environment) high-achieving individuals. The larger bank is more outwardly accepting of difference but in roles much less senior than mine. I have not disclosed because I honestly don’t know what my expectations would be in terms of accommodations. I’m still figuring out what it all means one year post-diagnosis so how can I expect my work to understand my needs?”
“Yes, I have disclosed my diagnosis at work, mainly because I needed various basic accommodations. I felt it important, to make the best use of my diagnosis to help both myself and my employer – if I hadn’t disclosed, I would still be struggling with some basic things. Also, I was offered post diagnosis support from my local NHS ASC team. This is a 16 week group course and regular 1-1’s with a psychiatrist (I’m on with this now). These take place within my working hours, therefore work really needed to know.”
“Yes. I was diagnosed whilst working at my current place of work and couldn’t keep it in. Also, I am very sensitive about how quiet I am in meetings, and also the sense that people generally find me annoying and weird. So I wanted to talk about it to ensure that people knew that my reason for being quiet isn’t because of not being interested.”
“It was only when I discovered that my referrals to the developmental paediatrician were resulting in my families being referred to Autism Speaks and sent home (compassionate reassignment) to the US because they needed ABA therapy that I spoke up to a colleague about the harm that would cause and disclosed my diversity.”
“Yes. Both to my business partner and a contractor I do projects for. After my official diagnosis, also due to burnout, I felt I needed to be honest and explain I might need some accommodations (better project management); and also why I needed and will need more time to do some tasks”
“No. I am too fearful of the impact no matter how ungrounded. In many ways I am still living a dual life.”
“In my current workplace, not to my boss. He’s always treated me with an even hand without knowing. I have disclosed to a co-worker (who happens to have #ADHD). I just prefer telling people these days. And with my co-worker, I think I’ve been able to help him.”
“I disclosed to one person with an IT background, figuring I wasn’t his first employee; also needed someone to know why I had been so sick at that time. Two other co-workers as friends and that is where I stopped, professionally.”
“I disclosed the first week in training with the “tell me something interesting about yourself”. I did so for a few reasons. Primarily it was because I am proud of being autistic and I want to serve as an example to show others what autism is and isn’t, help them understand and hopefully reduce or eliminate any negative or bullying attitudes and thoughts about autistics. The other reason, to be honest, was because I really didn’t want to talk about anything else that was going on in my life.”
“I work as a cab driver so to disclose my autism I feel would be more of a hindrance in my profession then it would be helpful for me.”
“No. New job, scared to lose it. Working doubly hard to prove myself worthy while I’m new, so people will overlook my mannerisms.”
“Once I was diagnosed, I was determined to be open about it as I needed things to change.”
“I have struggled in keeping jobs, and my hope was that disclosure would increase job security.”
“I disclosed that I was Autistic to my place of study/work; I graduated from there at the end of July. (It was a journalism course where you work alongside.) It was a terrible mistake-and I wish that I hadn’t done it. My (current/potential-long story) employer found out via my Twitter page.”
“I have not disclosed to the parents of the child that I provide DSW services for or to the child… If they don’t already know that I’m autistic, I’m afraid that their knowing that would shake their faith in my ability to care for their son.”
“Yes, I have very recently started to come Aut to both clients and colleagues. While I knew I was Autistic, I didn’t feel confident coming Aut (or standing up for my Autistic Identity if questioned) until I had a formal confirmation of my diagnosis. I often work therapeutically with autistic adolescents and adults on exploring and accepting their autistic identities and focusing on ways to meet needs rather than appear allistic; it felt right to be open about my autistic identity.”
“I disclosed it to my suppliers, to explain my reactions, needs, etc: be precise, give time frames, my reactions to changes without notice, my extreme tightness about delays and delivery.”
“Yes. Partly because it’s just getting harder to not be my authentic self as I get older, partly because my work team includes friends so they knew outside work, and also keeping it quiet inside work just is too much effort anymore.”
“I’ve had my diagnosis for 21 years now. I started working in 2010 – as my diagnosis became a teenager. So I was comfortable within myself, and of my diagnosis, when I started working. Yes, I’ve declared being autistic at work. I started by telling people on a need-to-know basis.”
“I disclosed my anxiety disorder to my employer and received little to no support. The accommodations would last for a couple of weeks and things went back to the way they were back to the way they were.”
“I did disclose being autistic in my workplace with the hope that there would be more understanding if I found things difficult.”
“I disclosed at my interview because the role was working as a manager in Equality, Diversity and Inclusion for a well-known academic organisation. I felt it was important to be honest and open about my diagnosis, as the goal of the job was to build ‘inclusion’.”
“Yes, because I was being treated like a Neurotypical and that was causing excessive anxiety”
“I work currently for Kenyan refugees and prior to that have exclusively worked for Russians. Neither country has favourable views on autism as both currently view autism as schizophrenia. So I chose not to disclose.”
“When I started my current job I didn’t initially disclose. When it became apparent that I would have issues with the environment I told my then manager about my autism diagnosis and the sensory issues I was having. The problem was that I didn’t get across the severity of the situation. I had a battle to get some time working at home, and the manager in question was a bit obsessed with having his “team” in the office. Essentially this sort of attitude puts my suffering in the office below some vague sense of there being a happy team all getting along. I should have got HR involved earlier as that helped later on.”
“My coworkers were surprised. They asked when I was diagnosed; when I told them, they seemed to be in agreement that I “grew out of it” because I seem to have “good social skills.”
“I still haven’t particularly unmasked when in front of my colleagues because I’m still fairly new to the position and am hoping to “make a good impression.”
“I have disclosed to my boss and a few others. With this gossipy bunch I work with, my entire section will know soon enough. I chose to disclose with the hope that I might get a little more forbearance when I am socially awkward. I had also hoped to get some assistance at work as far as accommodations, and those are being worked on.”
“I am still experimenting with disclosure on new teams, selective to people for whom it might matter (a project manager, for example). Also, as a high performer with a strong professional reputation, I can afford to expand visibility.”
“I have disclosed to my coworkers recently after having been with them for about three months. We’re generally pretty open with each other; others have disclosed personal information to the group. We were having a “get to know each other better” breakfast, and I had talked about my blog, which focuses primarily on autism and mental health. So I then mentioned being autistic myself.”
“I’ve only had a positive response. I have great, flexible supervisors. My teaching supervisor (who I work closely with) and I are friends on Facebook messenger, so that helps with communication.”
2. If you have Disclosed in the workplace, what was the reaction and have you been able to unMask to any degree?
“I got such a negative reaction from staff (not peers or patients) that I realised very early on that at the moment, I cannot both unMask and qualify (as a Doctor).”
“The reactions have been largely either already suspected/knew (no change in expectations), or have been startle with curiosity (how does that work? type questions).”
“The job had been set up so I had to travel between three places which I found extremely difficult. I asked for an adaption – that I could work from one office. Unfortunately my employer knew little about autism and thought it was like anxiety – that the more I did something it would get easier. Needless to say it didn’t. It just led to burnout. I felt I could unmask a bit around a certain colleague who was lovely and very understanding, but largely I could not unmask at work.”
“I’ve been able to unmask a bit but never told anyone officially. Everyone is already very accepting so I don’t feel like I have to worry about putting up a front or anything. Sometimes I do stop talking because I know I’m not talking in other people’s language & it won’t work”
“My boss and co-workers were actually really supportive and loving. I still haven’t unmasked though, I think I’ll be able to when I learn how.”
“I feel I am pretty good with determining who needs me to mask and who I can be myself with. The latter have always been kind & supportive.”
“I’ve found one coworker in particular started actually being meaner to me, which I don’t get… I’ve just been avoiding her.”
“I was told that I’m using autism as an excuse and, since they were benevolent enough to provide me with accommodations (none of which were helpful), they had a list of expectations that I should honour in return.”
“The Neurotypicals were interested at the time I told them and then nothing more; Like I never said anything. Only my un-self-aware Autistic boss wanted to know more.”
“Most people didn’t seem to care. Some gave the “but you don’t seem autistic” response. Some tell me about someone they know who is autistic. I haven’t had any outright negativity about it, and because of this I go into work every day completely unmasked. My new supervisor was a bit unsupportive when I first joined her team, but through honest dialogue she has become a great supporter.”
“Everyone I told has been nice and sympathetic…”
“One workplace wouldn’t accommodate me at all, so I left.”
“Colleagues in the team were told about me being Autistic but never once mentioned it or showed an interest in asking how it affected me. This implies they’d rather just leave me alone and leave it to my manager and senior colleague to look after me. They at least are helpful. Being left alone is better than being dragged into masking, but it doesn’t make me feel accepted in the wider team beyond being a person who happens to sit at a desk.”
“So far, I have had very positive reactions. The most positive reactions have come from my clients, many of whom are #actuallyautistic themselves. The overarching sentiment has been “congratulations!” often followed by jokes about teaching me the secret handshake or baking a cake to celebrate. I am lucky enough to work in partnership with very close friend who is also a Clinical Psychologist; she enjoys it when I am my openly Autistic self, freely stimming and engaging in tangential, detailed monologues about my interests. So I find I can unMask quite easily in my lunch breaks and between sessions. I am trying to unMask a bit more with clients, too… But I also need to be therapeutic, so the tangential, detailed monologues aren’t so helpful in therapy sessions (not from the therapist, anyway!) I also believe it is important to be genuine as a therapist, so I am continuing to find my own Autistic therapy style rather than trying to emulate an Allistic therapist. That’s not me; and never has been. Since my diagnosis I have felt more freedom to explore this.”
“My new job knows, and accommodates me with working from home and a flexible schedule. I sit cross-legged in chairs, get up and move whenever I need to, and am honest about my need for breaks. When I work from home I don’t have to mask. Just switching to a mostly work from home environment has caused my health – mental and physical – to improve.”
“I got “All Cats Have Aspergers Syndrome” by Kathy Hoopman for my 28th birthday from my Grandma. I showed some colleagues the book and used it as a disclosure tool & got a good reaction.
4 years ago, I appeared in The Age (story & photo) – I barely got any work done that day, because of the number of people who swung past my desk to tell me they’d seen me in the paper!!”
“The reaction was supportive. People who worked with me said, “Many things make sense now”. I am now setting up a neurodiversity network at work. That said, I don’t think I have fully unmasked. However I do get team members to read my ‘working with me guide‘ now.”
“Most people have been very supportive.”
“Yes/ No. When I talk to people about about specific instances, they are open to finding new ways of working that suit all of us. Over time they tend to forget and need reminding.”
“One member of staff who has now left was not supportive and was getting another colleague to monitor what I was doing and was causing friction within the team. I’m not sure if I’m peeling back the mask yet but I know I’m finding it harder to cope and stress is becoming unbearable.”
“The employers/Lecturers, largely, were awful; apparently I “suffer” from Autism, and when trying to complain, the person in charge took offence – because their relative was on spectrum! I had to mask in lectures because I was singled out – he was the typical, elitist, old-Etonian type. I was laughed at and called obsessional, so I went with the mask.”
“There wasn’t much reaction.”
“The reaction to disclosure was positive – and they made the right noises about support and understanding, but in practise, it didn’t work out that way. When I ‘unmasked’, and was open about levels of anxiety, and what factors specifically in the workplace could be adapted to reduce it, I received push back from my manager (an ‘Equality, Diversity and Inclusion professional’).”
“My employer had the attitude of if I was perceived to be coping well – as I looked to be whilst making – then I must be doing fine, regardless of me saying otherwise.”
“There have been various reactions within work. I have only told a few people on a need to know basis. I’ve had the usual, “well we’re all a bit autistic”, “you can’t be autistic, I’ve known you for years”. The worst reaction was being avoided by someone who couldn’t seem to deal with it. Most of the people I told though were very accepting. Some have even asked me about it and are now much more understanding about some of the “weird” things I do. I never intentionally unmask at work, however, the mask does slip on occasion.”
3. If you have unMasked in the workplace, even partially, what was the reaction? Was it what you expected?
“I’m a naturally smiling person – so not many people know of my mental health issues. I’ve got a few trusted people at work that I can go to when I’m struggling, or if I’ve been triggered.”
“I’ve found that a whole bunch of people have absolutely zero clue what it means to be autistic, which is surprising to me and I have no idea why it’s surprising.”
“When the mask has slipped, the people who know now generally are understanding, which really feels good. The people that don’t know tend to be a bit surprised/shocked. I still feel like I would never be able to fully unmask at work. I’m still struggling with this even with the people I trust outside of work. (Too many years of being bullied I guess).”
“I still don’t unmask entirely because I am still afraid of being seen as unprofessional.”
“I stim in small ways that aren’t noticed so my partial unmasking hasn’t presented me with any issues so far.”
“I feel that I lost professional credibility when I disclosed my autism. I was asked: “If you are this way, why did you become a therapist? Why did you choose a profession where you have to deal with people? Shouldn’t you have chosen maths or computers?””
“There are the constant questions, such as: “what is this like”, “what do you think about this?” Which is good in a way because they care and want to learn and do good. But, I’m a visual processor and auditory/spoken language is like a second language to me. So I have to listen to their questions, see them, see the answer and figure out how to use words to describe the answer without going on too long so that I don’t lose their focus and they actually learn (the inability of Neurotypicals to stay focused on a topic until they completely understand it in its entirety is exhausting).”
“There’s not a lot of interaction with many people during the day, so it’s a muted reaction.”
“My contractor was just wonderful! She talked about my strong points and why she wanted me as a part of their team in the first place. It was heart-warming! I could always be myself around her though.
With the others I still mask. When I try to be myself, assert myself, they cannot hear me at times. I tried many times and I failed. Not sure what to do about it so I keep masking, doing what’s expected of me, dealing with my Mental Health and Burnout the best as I can.”
“Don’t think anyone has noticed as my unmasking is only slight – a bit more stimming, less eye contact from me, and less feeling obligated to make small talk; at least no one has treated or looked at me differently.”
“I work in a building of over 3000 people, though, and those who don’t work directly with me will frequently give me disapproving looks if I am stimming or make a rude comment if I don’t have the expected response to some social norm.”
“I’ve had one person make an overtly sexual comment about my stimming (I’m a chewer and always have my stim necklace in my mouth), but because my workplace is so understanding I had the courage to put him in his place really quick.”
“I think after attempting to be normal for all this time, I’ve just gotten used to it and think at work, in a professional environment, that keeping up the polite facade may be safer.”
“I don’t unmask fully. There are things that I do at home that would disrupt other people. In my new workplace, I feel I can be mostly honest. I was stressed all the time when masking because I felt on guard. I am more relaxed now.”
“One supplier invalidated my disclosure. Since then he tends to dismiss my input and requests, even though I am a huge client of his. He is also known to say stuff like: “This guy is a psychopath, he’s probably autistic”, about others.”
“If I stimmed in the workplace then some people would look puzzled as to what I was doing, which I expected. With colleagues I felt uncomfortable with, I could struggle to make eye contact and be selectively mute. One particular colleague thought I was rude and didn’t like it.”
“Too much unmasking has led to people reducing my agency, so I tend not to at the cost of social energy.”
“It has not been what I expected. My anxieties are based on old history, where I was too weird, too different, rejected or looked at funny or avoided or directed back toward masking. So I masked. Then recently I unmasked with one client selectively (without direct disclosure) and they got really excited about working with me, because I displayed how different my thinking was. At worst I get ‘huh, could you help me understand?’ and at best I get absolutely delighted responses; Which still freaks me out, because of the history of mandatory social compliance to Neurotypical norms.”
“I am a lot more inhibited at work because I’m more nervous and uptight because I’m around people.”
“I don’t necessarily have to act as “professional” when I’m at the house of the child that I provide DSW services for. I play with the child, who likes building Legos and dancing and jumping on the trampoline, so I can stim without it being “unusual” (the child also stims vocally and by rocking / jumping, and he likes it when others stim with him).”
“in my current situation nobody had an investment in me masking to be friendly so there wasn’t anything to drop particularly. I guess me not really using a mask much has led to the “reaction” of being generally ignored? As I type on I’m not sure how much of a mask I had beyond restraining myself from running out of the office and never coming back.”
“At one work place, with lots of focus on being social and networking, it did not go over well. People kept coaching me on my body language, pointing out how it was sending the wrong message.”
“Yes/ No. When I talk to people about about specific instances, they are open to finding new ways of working that suit all of us. Over time they tend to forget and need reminding.”
“I haven’t told anyone else but suspect my line manager may have said something to my MD. I had an issue with the office lighting and so told my MD that I have a ‘Hyper sensory’ condition which is why I hide away in a separate office with the lights off. Though they would rather I worked in the open office with everyone else, my reason for secluding myself has been accepted.”
“I have struggled in the past with my stims being too much for previous colleagues to handle, especially when I click a pen.”
“They did not ask what they could do to help make things easier, or respond to some of the suggestions I had made, but stated that I needed to work on my ‘resilience’, as I wouldn’t be able to do the role without it. Which, for a manager who claimed to want to ‘level the playing field’ for those with ‘protected characteristics’ (presumably including autism, and those with mental health challenges), I found astounding. I also found it astounding that the manager was incredibly derisory towards (and about) someone else who had disclosed their mental health condition to them.”
4. What do you feel your industry/profession’s views on Autism are? What is your industry/profession (If it is safe for you to say)?
“My industry is autism and education, so they are quite autism aware but sometimes I think they forget.”
“In the Medical profession – the myth that autistic people cannot empathise is very harmful, because there is this idea that doctors must be caring and empathetic people. There are a lot of people who think that autism automatically means being at best bad with people and at worst sociopathic, which implies that being autistic and being a doctor are incompatible. At the same time, it is widely acknowledged that many doctors ARE on the spectrum… it’s just that no one will admit to being one, for fear of damaging their professional reputation and their perception by colleagues.”
“I have worked with quite a few undiagnosed Autistics over the years. But knowledge & understanding of autism stopped at the Rain Man level.”
“My current Team is great, and I worry, thought, if I had other people, would I be as successful in my work as I am? I sincerely think I wouldn’t be.”
“I work in solar and energy management, as a system designer and Internet marketing specialist. Since this industry is already progressive, I think in general it has better than average tolerance of Neurodivergent workers”
“I work for a local authority. I think there is a very low understanding of autism in the workplace. When job adverts come up, one of the main requirements always seems to be “excellent communication skills”. Although communication is much more than just talking, I feel that a lot of potential employees who could be extremely valuable in the workplace are being excluded because of this.”
“My industry thinks Autistic people would be great for IT or as ‘number crunchers’.”
“I work as a management consultant, responsible to managing large scale business & technical change in investment banks. I think the industry I am in are very open to the possibilities of Neurodiversity, however there seems to be more focus on recruitment. This is the wrong way round, as I believe you need the culture first otherwise people will struggle once they are recruited (or be limited to limited teams/ roles where additional support is established).”
“My feeling is that some people and businesses often tie and confuse the need for certain accommodations with poor work performance and some kind of a burden they need to be mindful of. So if I continue to mask it’s due to that. I know I can do my job well. I love working!”
“I need to feel safe to start feeling I can unmask. I’ve had people (family) think I’m weird and childish when I finally started expressing my lack of understanding of some things said, especially regarding subtext! I feel I cannot allow myself that to happen at work.”
“Journalism is a typically not-at-all-diverse industry, as routes into the industry are very bridged. Things are changing, such as with the Journalism Diversity Fund, but there’s still a long way to go. Newspapers view us as a hindrance – such as at The Daily Mail, but The Guardian is brilliant. I want to work their desperately.”
“I am a female working as an engineer in the construction industry, already in a minority. I don’t like standing out for being different, but it’s the story of my life. I think the construction industry in general needs to do a lot more to accept differences. I believe there is a lot of stigma and negative stereo typical images around autism. There needs to be a greater awareness and understanding of it, and how it can effect individuals, but also how the individual can add unique benefits to an organisation…”
“I was a welfare rights officer, I’m not sure which industry that is classed as being in. Although people in my profession assist clients with autism a lot, I think they have little knowledge of interacting with autistic people outside of clientele. I feel that they think if it’s not obvious all the time (because I was masking) it was OK to act like it didn’t exist at all. I think their attitude isn’t great towards invisible disabilities but better towards physical ones.”
“I think despite a willingness to want to be inclusive, support diversity about what this means in practise – i.e. a reluctance to confront implicit bias (or even the ability to recognise implicit bias), or challenge the way workplaces are structured and operated, to be more inclusive for those with diverse traits.”
“I work with IT stuff so I guess I’m allowed to be quiet and work on my techy stuff.”
“There have been times when they have expressed board generalisations (I.e. “Autistic people wouldn’t succeed in a setting with a lot of people / in a good service position”); and they have a tendency to use functioning labels. I have yet to correct them on their use of functioning labels, though I want to. I use support labels (high support needs / low support needs) when talking about consumers. I do think that, as a whole, Rehabilitation Services may be too quick to generalise people autistic people, but I also do see a genuine effort to discover and understand the specific strengths and weaknesses of each client.”
“Education’s role is to have all the answers. Virtually all US districts focus on ABA to “normalise” kids, and use social skills to fine tune that normalisation. I recently asked a BCBA her opinion on the social thought approach to autism (which if I understand it correctly, it would be a more natural, user friendly way of integrating autism and society). Her response was that it isn’t evidence based, so she would not consider it, but maybe the speech department would. I managed to keep a straight face. In the past I’ve worked with other Autism specialists who had a more liberal attitude, but even then, life was to be managed through checklists.”
“Autism is prolific in my industry (STEM, Software Engineer) and traits are often associated with the profession before the condition.”
“I came from a busy corporate workplace and then moved to the HR Consulting industry. Corporate culture is not really neurodiversity friendly”
“I don’t think teachers, the ministry of education, or teacher colleges are even aware we exist. I feel they think autism or other Neurodivergent ‘states’ exist only within student population.”
“I think some workplaces in my sector are more progressive than others, but in order to make workplaces truly autism friendly, I don’t think many workplaces really have the appetite or understanding to address the scale of necessary change, when so much received wisdom about ‘best practice’ generally is entirely exclusionary.”
“My industry is alternative medicine. They have no clue about autism, same cliches as the rest of the population: Backwards opinions.”
“There is very little understanding.”
“It varies greatly. Most of the resources we have for borrowing are very…problematic, and locally our supports are very kid/ABA oriented. These affect people’s views a lot. Overall, work’s been pretty good, but we support 33 libraries in the most conservative part of Canada, so site visits I’m less open at. Officially, I’m an IT being for a regional library system, but I’ve been doing more disability advocacy through the workplace. I am working on an initiative to update and provide functional Autism material for borrowers and move away from the backward and harmful stuff we have now.”
“I work in a University and I feel they are very inclusive and supportive. There is a support group for employees with disabilities on top of accessing adaptations etc. As they have to be inclusive and adaptive to students they apply the same policies to the staff members as well. Best job I’ve ever had.”
“I work for a very large global financial institution. My employer is really big on diversity, and is part of the Autism at Work program, though I haven’t found that program to help me, as it seems to focus more on recruiting and aiding males who have savant like technical abilities. Our company internal news pages frequently write articles on autism, though they get a lot of it wrong, plus actively support and promote ABA and Autism Speaks. I have spoken out against this, with great detail as to why it hurts autistics, and they basically pat me on the head, say good puppy and keep right on supporting and promoting it. Sometimes I feel that I am more of a little trophy for the company – just one more statistic to show how “welcoming and supportive” they are for hiring autistics, that they don’t want to really learn or understand, just sound good to the media.”
“They’re open to it, but they don’t actively embrace it industry-wide”
“I work in an IT organisation which is family run and owned. They are very focused on profit and growing but also very flexible. They are not the most well-read, worldly or socially engaged people so I feel more comfortable without a full disclosure. We all know about silicon valley and autistic folk there. I suspect I and my manager are not the only Autistics in the company, but we are only 12 people so each person needs to find their own comfort zone.”
“I am a Clinical Psychologist working in mental health, with a particular focus on mental health in autistic adolescents and adults. Many of my colleagues are Autism positive, but it seems there is a vast array of approaches/attitudes to working with Autistic people in the profession. There is a part of me that worries that I will be reported to the regulatory agency if people hear that I am disclosing I am Autistic- even though my work functioning is intact (I have the ABAS-3 results to prove it!) and there is no reason to doubt my competence or ability. I guess this feeling arises from internalised messages from society, which both saddens me and fuels me further to come Aut. I feel it is important for me to push against stigma by being open about my Autistic Identity, as I am in a position where I have the freedom to come Aut.”
“One thing in particular interests me with some people’s perception of education and demand for high achievement and performance, I often wonder if the parents would be supportive of their kids having an autistic teacher. If they could see beyond the diagnosis and realise the benefit.”
“Being that my primary career is in IT tech, it’s very much about interfacing with computers rather than people. However, my secondary career is as a teacher and that can be difficult.”
5. If your experiences of dislosing and/or unMasking at work are negative, do you ever see a time in the future when you can safely unMask at work? What could be changed?
“I am desperate to meet and ally with these other autistic doctors, because I think we could do a lot to support one another, but the stigma is huge and unMasking is not an option at the moment. Perceptions ARE changing, indisputably, and I expect that in 20 years I might be able to be open about my Neurotype. But for now it is unthinkable.”
“I work for the government, specifically the Army. The government over the past few years has tried to be open and accepting of disabilities, or differing abilities as the case may be. In this new climate in the US though, I’m not sure if we’re going to go backwards.”
“I can’t see a time when I can fully unmask at work. It wouldn’t feel safe. I think there is little awareness about autism within my workplace, even though I’m trying my best to make those who I’ve told aware of some of the difficulties it causes me to have, as well as some of the positives and benefits it brings.”
“I really don’t know if I will ever feel comfy. I am accepted as ME: revealing I am someone they have all kinds of wrong conceptions about can blot me out and then I’m evaluated as how well I match a stereotype.”
“In the US? That autism is something that needs to be researched and that they need to understand the “deficits” in autistic people. I think the UK has a few more figures that are changing autism research compared to in the US but maybe I just don’t see as many here.”
“I will never put the mask on again, period. That’s actually one of the reasons why I went solo eighteen years ago. Last time I tried a salaried job I lost 5kg/11 pounds (and I weight 48kg/110 pounds) in five months, I almost died – so I can’t go back to those salaried workplaces, unfortunately.”
“I think there is hope – generally awareness is growing in the population, but I think current levels of ignorance means it’s going to be a long time coming.”
“I left a job that I could do in my sleep because I couldn’t unmask / get accommodations. It was negative for me because I was at the wrong employer, not the wrong job. Leaving was hard though.”
“Some companies have bad rules and a culture that is very anti-autistic (unintentionally). I would love for that to change some day.”
My employers are not good at interfacing, they need training. I will probably continue to mask, as I tend to be anxious about not fitting in.”
“I’m planning on leaving education because of the insistence on conformity and standardization.”
“They think they understand it, but you can’t pass a final exam on Hamlet if you have only read the cliffs notes.”
“It’s hard for me to not be open, but sometimes I get burned. I think I am going to be a bit more cautious going forward.”
“I wish that I could be more open about my experiences as an autistic person in my positions, as I feel that my lived experience would benefit the people that we help in both positions. I think then I would be able to unmask.”
“With my current managers I do not feel I would ever be able to unmask fully at work.”
“I have had a few negative experiences, I’m not sure I can fully unmask ever.”
“They were reluctant to make adaptions. They saw it like anxiety and my difficulties could be ‘overcome’. Knowledge of how autism affects employees would have been a positive change and willingness to adapt roles for disabilities that aren’t purely physical.”
“I am one of the lucky ones. I am accepted, my insights and experiences deemed worthy. I am shifting policy. But I still mask when needed to maintain this position, and the education and explanations are a significant drain.”
“I hope it can change, and I remain optimistic. Journalism needs to change the ‘Old Guard’ before that happens though.”
“I probably will never get promoted unless I mask.”
“I think I can help Autistic people have a better life than I did, if I use my older white Male privilege and show colleagues that Autistic people are just people.”
6. What strategies do you use with Masking/unMasking in the workplace?
“Written communication is a great way of me reaching out when I’m struggling.”
“Mirroring, Scripted responses, Discrete stim toys, Quiet room recouping, Conversation practising.”
“My main strategy is to use emails to communicate. That way I have time to work on the content and add the Neurotypical style form. Also, I do not provide any phone number to my clients. In fact instead of finding ways to mask I avoid situations in which I would have to mask.”
“When I am selective about masking, it’s generally twofold staying as present as possible in my body and attending to the vast set of social rules, and consciously applying them, ongoing. It’s still a cognitive drain, but I have some more automatic features. I also tend to lose the mask if I get onto a special interest or passion subject, so if masking is required, I have to clamp down hard on the desire to geek about my favourite things.”
“I often disappear to somewhere quiet at Break-time.”
“I pretty much work in an office by myself so I can have lights off and Stim without a problem. I hate the telephone so can do all my communications by email. I’m lucky I guess, though I am responsible for Risk in the business. I don’t think I make a good fire warden as the alarms give me anxiety!!”
“I make a huge effort to interact with colleagues which emotionally and physically drains me.”
“I am very talkative and lively with friends and family. I also joke around a LOT. I drop that at work. I am much more reserved, often second guessing that everything I want to say is “unnecessary”. I hold back a lot, watching. I try to be still and quiet so I can blend in.”
“I used to call the seminar room (with super bright, glary lights) “headache room” cos I always got a headache in there. Then I have confidence to wear a cap when in there – no more headaches. Now I’m well known at work for my cap wearing and live tweeting of seminars!!”
“I used to try to be somewhat like co-workers to fit in; although I know I was always awkward anyway. Suppressing anxiety was exhausting and led me to full disclosure because I’d have full on burnout if I kept doing it.”
“With my noise cancelling headphones – I’m able to use these when necessary. Mine are discrete in-ear buds, so that means I can have them hanging off my work shirt/hoodie when I’m at a teaching conference for when I need to reduce the noise during breaks.”
“Given that I came to the conclusion that the manager was not someone tolerant of neurological differences, I resigned that job, so I don’t currently have to mask (until I get another job) – but generally there was a lot of going to the toilet to find just a few precious minutes to ‘come down’ from over-stimulation and anxiety.”
“There was a lot of rehearsing potential conversations in advance to I could be perceived as ‘responding appropriately’.
“Constant vigilance that my posture and way of walking were ‘normal’.”
“I think the only masking I’ve got left is copying other colleagues where I have trouble figuring out how to handle certain things in meetings, or expressing opinions about priorities. I’m a bit lost without a senior colleague because he bolsters my sense of what I should be doing and what’s important, and how not to get into trouble over-committing myself.”
“I tap my foot or swing my leg under my desk at work. I wear my sunglasses or headphones when needed. My anxiety is felt more in my stomach I tend to internalise it as much as possible.”
“When I am masking, I maintain constant awareness of facial expression and body movement (mine), word choice, and conversation content. I monitor for other people’s reactions and analyse those, and adjust mask in response. I also assess multiple conversational responses in real time, and can obsess about exact phrases or structure of emails, for example. Masking, it takes me five times as long to write an email.”
“I talk to the people relevant for work mainly and know nothing about them beyond that. I don’t think much can be changed because to some extent I’m just with the wrong people.”
“Strategies I use are remembering eye contact, remembering to look away sometimes, remembering to use non-verbal cues when being talked to (nodding my head, ‘Mmm’ noises, saying ‘yeah’) to show I was listening, open body language too.
All of this is unnatural for me, so was exhausting and draining to remember/be aware of for eight hours a day. I also wore a watch which I could fiddle with as a means of subtle stimming.”
“I generally keep my stims very localised/less noticeable. I also downplay my anxieties about making phone calls (which I HATE with a smouldering passion but which is necessary for the position). I tend to be a bit of a yes-woman, agreeing to tasks or setting up meetings even when I feel very overwhelmed by them.”
“I mask my stimming by doing “bone dancing”, which involves tensing muscles as if I am stimming when I am not. I also wear sensory satisfying scarves and beads to fiddle with surreptitiously. The therapeutic framework/counselling micro skills have basically taught me a therapy mask; I have a friendly neutral face that takes quite a lot of effort to sustain as my face naturally likes to frown. But case conceptualisation/holding psychological frameworks in mind comes naturally to me so I can expend cognitive energy on interpersonal skills where other therapist might be expending the energy on remembering detailed information, finding patterns, or remembering psychological theories. The latter part is automatic, so the process is just a bit upside-down for me. I have all sorts of daily routines and aspects of sameness to keep me calm so my mask stays in place. My mug has my name on it- no one touches it. That helps.”
“I am extremely professional. I work harder than most people in an industry known for its long hours and for prematurely aging fresh young MBA grads. I assume a kind of jokey good humour and manufacture a fake bonhommie. I often find myself in a position of having to tell people they’ve done something wrong so I always practice what I’m going to say thoroughbred before speaking to them. Also, I try to be extra good at my job and kind of perfect so there’s a wide margin of safety if I do make a mistake. For example, I have been accused of being abrupt and brusque. But if I’m always right and my work is superior then such criticism is secondary.
Also, I moved out of a role where I managed people. That was way too exhausting for me and drove to severe burnout and a leave of absence. Funnily, several people on my team who’d been considered “difficult” said I was the best boss they’d ever had. Probably because I tried so damn hard. I still bear the scars of that whole experience.”
“I make eye contact even though it’s painful and I can’t pay attention as well. I talk when I’d rather be use words. I smile when I don’t want to so others don’t think something is wrong. I wear an uncomfortable uniform and pretend it doesn’t bother me. I hold back from stimming/flapping when I’m overwhelmed or happy. I’d prefer to do what I call waddling, bouncing from foot to foot, but I don’t do that out of fear of being questioned or ridiculed.”
“Once I feel more relaxed I’m less likely to mask, and that’s where I run into trouble. I talk too much, over share, and I have poor time management and organisational skills.”
“Anything to do with department related politics I ask someone else.”
“The strategy used the most is just being quiet, not speaking up, not offering opinions. I try to be a good listener, but honestly I think most of the time I come off as creepy.”
“I have lists of dos / don’t for most situations, which has been created over time. I observe people around me, and will often use how they act / what they say as a guide for my own responses.
I avoid people when I am struggling, and will rely on trusted people around me to step in when I can’t cope.”
“I use email as my chosen form of communication were possible, aside from that I keep my contact with people to a minimum and focused on the task at hand”
“Just getting through a single eight hour day without a meltdown from the constant social interactions and noise overloads is the best I can hope for.”
It wasn’t ALL doom and gloom was it.
I mean, yeah, much of it was. It’s hard to read in places, at other times there’s a tingling of hope.
Some interesting patterns emerged. Some of them were of no surprise to me at all – that certain employment sectors and Industries are more open to employing Neurodiverse people and are more able to provide an environment for them, that certain small businesses can tend to be more supportive offering more of a family like environment, that larger businesses and corporations are very keen on appearances, but the reality can often be very different.
One thing did surprise me more than anything and you may have picked up on this prior to reading the responses from the image at the top of this article…
The words glowing in neon in that image say “Work Harder” and that’s the over-riding message I got from most of this.
Even from the people that had successfully disclosed and felt supported in doing so, the vast majority still Masked at work and most of them knew they were doing so.
They ‘worked harder’ at Masking.
How scary that even in a place where you feel safe enough to be able to talk to people about your diagnosis, even ask and receive accommodations, yet still you feel the need to hide to protect yourself…
To hide your true self away.
Or perhaps it’s beyond a need, perhaps it’s an uncontrollable urge. Perhaps an unstoppable force.
Masking is so wrapped up in our very existence, that often we cannot stop, no matter how desperately we want to.
I get that.
There are times when I know I’m doing it, when all I want is to burst into the light, to unleash myself… But the Mask is like drowning at sea, you kick and you kick, you can see the sunlight dancing on the waves above you, but no matter how hard you try, you only seem to sink lower and there comes a point where you just don’t have the air anymore.
The fight is gone and you slip lower and deeper, the moment lost, just an infinity of blue.
But there truly comes a time when it needs to come off, otherwise not only have you spent a lifetime concealing yourself away, but you have spent a lifetime damaging yourself in the process.
Masking kills us.
Masking sucks the energy, the very life from our bones and our minds and ultimately we die from it. Not that you will ever see that on a Death Certificate, because nobody really understands us enough to get that.
This week, of all the weeks of #TakeTheMaskOff, has been the one least directed at Autistic people in my humble opinion. There are no strategies given which an Autistic person alone can adopt beyond the obviousness of self-care and of Acceptance. No matter how much we accept ourselves, no matter how well we look after our physical and mental health – in this we are pretty much solely reliant on YOU.
So, in terms of this article, it’s on you as the Employer.
These answers are for you.
These coping strategies are for you.
You control our work environment, you are who has these expectations that we cannot always meet, you are who makes these judgements on us without a full understanding of who we are or what makes us tick.
Take a moment from staring into the abyss of your assumptions of how the world turns and consider for a moment that there is another way, a way that may suit one or more of your employees and make them not only more productive, but also make them healthier people mentally and physically.
After all, that philosophy of ‘work harder’, it applies to us. We are working harder. We are working so damned hard it is breaking us over and over again.
If you know, or you suspect, you have an Autistic employee, talk to them.
Reassure them that there is nothing to fear from asking for help, assure them that you want them to be as happy at work as they can be.
Assure them they are safe, that they are valued not because they are proving their worth, but because of who they are, not who they think that you want them to be.
And know that we don’t always know how to express our needs well. That trust and respect is something for YOU to earn from us, as well as us from you. If you have over 30 people working in your business, the chances are at least one of them is Autistic, the greater chance is that they don’t know it. The chances are doubled that you have Neurodiverse employees, for whom the world doesn’t work as ‘normal’.
Take this as an opportunity to empower your workforce, ask them honestly what could help them. Ask them if the lights are hurting them, ask them if they need somewhere to go Spin, ask them to explore themselves and find what they need. Be that person who genuinely gives a shit about the people working them, not just because a happy employee is a productive, but because you’re Human too; and the bottom line is not your bottom line.
Help them unMask.
For the Autistics I’ll leave you this with a quote from someone whom I met online very recently:
“I think unmasking at work can be one of the more frightening ones. Just as many LGBTQ people fear losing their livelihood if they are “out at work”, many Autistic people fear the same, or that they won’t be given challenging assignments or that they’ll be passed over for advancement if they merely self-disclose or more or less unmask.
There is much buzz in the business world (at least in the US) these days about Diversity & Inclusion and the companies that are actually putting programs in place around that are finally creating a safe environment for it. On the flip side, I strongly encourage those among our generation who can do so safely, to unmask at work even if it’s just with our peers.
Whether we like it or not, we’re fighting the last civil rights battle and we have a responsibility to future generations to show Neurotypicals that we’re among them and that we’re perfectly capable of doing our jobs.
There may still be anxiety around our challenges impacting us at work, but we’ve got to take a stand for inclusion. We spend the majority of our life as adults and we should have the right to be ourselves.”
The ability to unMask anywhere demonstrates great privilege, there are those of us who can do it far more safely than others.
So if you’re going to do it, do it safely, do it the best you can and do it bloody well.
Let’s not have to ‘Work Harder’ any more.