The Autistic Workplace Experience

Milton's double empathy problem in action

I just started watching Patience on ABC iView. It was recommended to me by my mother – she knows I love detective shows and am grappling with some recurrent themes in relation to my autism and how it impacts me in the workplace.

Patience is a “a brilliant autistic archivist in York who uses her unique analytical skills to help Detective Bea Metcalf solve complex crimes”. I was surprised how close to home the first episode hit.

I was diagnosed as autistic only last year – as a 35-year-old woman, doctor, mother, partner and homeowner – I’m not exactly the first person that springs to mind when you picture an autistic person. Historically it is young white boys whose families have the financial means to investigate why they think and behave differently to their peers. Similarly to why ADHD was historically more likely to be diagnosed in young white upper-class boys who were disruptive in class. Unlike their female or minority peers, their behaviour was identified as a symptom of an underlying neurodevelopmental difference, and not a fundamental flaw of their person or secondary to their monthly cycle/hysteria.

The idea that I might be autistic had never crossed my mind growing up. I knew that I had to actively monitor my interactions with people to make sure that I didn’t inadvertently upset them, but I thought that was a universal experience. Your own internal monologue when interacting with other people isn’t something that is commonly discussed among friends. Similarly, ADHD was not a consideration for me until a few years ago when my GP gently asked me if I had ever considered it as a possible explanation for a life of chaos that imploded after the birth of my first child.

When I was in high school, the social element of life started to become problematic for me. I embraced it as “The OC” drama that teenage life was portrayed as in TV and movies. I certainly didn’t realise that most kids from my socio-economic bracket weren’t watching the 2003 movie Thirteen and thinking that it accurately represented the average teenage experience. I had a habit of being non-judgemental and treating everyone equally to the point where I couldn’t identify an unsafe situation until I was chest deep in it. Thankfully my parents had a “call us any time and we will pick you up – no questions asked” policy, and I used it.

I was reasonably good at maintaining superficial friendships through high school, and most people liked me, but I struggled to understand the unwritten social hierarchy and associated rules. Many of them made no sense to me and I was constantly making faux pas. I could blend into whichever group of people I was around – mostly by falling back onto skills I had learned in acting classes that I attended throughout primary school – but there was always something a bit off. People could tell I didn’t belong, and I would inevitably say something or do something that crossed a line and be reminded that I wasn’t really a part of the group but feel free to visit any time.

Half-way through term 2 in year 8 I moved schools following a spectacular blow-up at my previous school which ended with a friend of mine handcuffed to an ambulance and taken away for an involuntary psychiatric admission. At my new school I gravitated to a boy who dropped out shortly after I arrived (or was he expelled? I don’t remember) and I would spend a lot of time with him instead of going to the hellscape social nightmare that was high school.

My year 8 school report read something along the lines of “Stef does well at school when she is here”. Even when I did go, I would spend hours in the chaplain’s office and little of my time in actual classes. I had a couple of long-term friends who he helped me navigate friendships with – often sitting us down and making us clarify intentions and concerns, airing out conflicts and helping us repair after dramatic falling outs. Generally, these blow ups were secondary to me doing something impulsively without thinking about consequences or how my actions would impact others, me genuinely not understanding why my actions have upset them or me having a disproportionate emotional reaction to a seemingly minor event – something I now recognise as rejection sensitivity dysphoria and emotional dysregulation. We remain friends now - even after a 21st speech that made me seriously reflect on how different my internal sense of self was to the person the rest of the world saw. This was perhaps the first time I really was taken aback by the extent of my masking - although I didn’t have a word for it then.

I learned in recent years that absenteeism from main-stream high-schools is a pattern quite specific to autistic girls. Dr Ruth Moyse is the expert in this field and highlights that these girls don’t want to reject education. In fact, many of them – like me – liked learning but struggled with the ethos and environment of main-stream secondary schooling.

It is interesting to reflect on my time in high school with the new lens of my AuDHD diagnosis. For example - how I could care so intensely about other people but easily forget their birthday or favourite colour. Hell – with my face blindness sometimes I wouldn’t even recognise them if they changed their hair or I saw them in a setting outside of our usual context. At the time these conundrums confused me because I was told that if I cared then I would just do better. The natural conclusion I drew from this was that I must be a deeply narcissistic and selfish person - a common experience for ADHD folk. People didn’t understand that it didn’t come naturally to me, or appreciate the sheer amount of effort that I would go to in order to remember something. I would create files on my close friends to remember key information and still manage to forget important information, miss events, run late to something I desperately tried to be on time for, and repeatedly fuck up social decorum.

I think it was this reason that I preferred to hang around boys as a teenager. They didn’t have the same intense social rules as girls, and once the possibility of romance was removed (mostly because of my intensely jealous and controlling boyfriend at the time), they were generally low effort relationships to maintain.

Similarly, I think I found the rules of an abusive relationship quite comforting. The rules were clear, albeit completely unreasonable in hindsight, and there was an agreement of unconditional loyalty which I had desperately longed for and never really experience with a peer before. It took me a while but I did eventually realise that what we had was a co-dependent trauma-bonded relationship where he needed to maintain control, and I needed structure and clear rules with a side of unpredictability combined with people so affected by various substances that they didn’t really pay too much attention to me and I wouldn’t be stressed out by being perceived.

When I started university, my older brother explained that to make the most of the experience that I needed to sign up to every o-week activity, join a bunch of clubs and try out different activities. This is how I ended up upside down stuck in a kayak trying not to drown in the uni swimming pool. Somehow kayak polo ended up on this hodgepodge list of must-not-miss opportunities to connect with others but it was safe to say it was not my calling.

Similarly, many of the people I met at that time quickly became a distant memory. My friendships moving forward mostly revolved around what I could offer other people – introducing them to girls, a house across the road from the uni – and more importantly a short walk from the uni pub – to crash at, or someone to help them move house or go clubbing with after a break-up.

My autism meant that I became fascinated with human psychology as a subject and studied it in VCE and in university. I learned all the “rules” of how to make friends and connect with people, and came up with hacks such as staring in-between someone’s eyes so they would think I was making eye contact without me actually having to suffer through the stomach turning discomfort of sustained eye contact. I would then explain to my two close male friends at uni how to go about relationships whilst simultaneously being completely dysfunctional in all of my own. It didn’t occur to me that for so many people, they could just do this without extensive study, and that maybe the only reason I was so “good” at socialising was because I had turned it into an academic endeavour.

Funnily enough, one of these boys told me later that he had specifically chosen me to be his friend for exactly this reason, while I had chosen him as a reliable and transparent person who kept me on track academically. A mutually beneficial relationship. He’d also chosen the third member of our group because of their intelligence, and the three of us became inseparable throughout university, often spending time together essentially engaging in adult parallel play.

While it may it sound more like a business arrangement to neurotypical folk, it was the start of a now approaching 20-year friendship. We are brutally honest with each other, we never have to guess what the other is thinking and we always assume the best of each other in our intentions, regardless of dumb our decisions are in hindsight. We can go months without speaking and then spend an hour on the phone talking about our global conspiracy theories or hashing out an interpersonal conflict in great detail trying to determine the facts of the case and then applying the appropriate social rules to determine what the best course of action is moving forward depending on the desired outcome. I can also end the call with “I want to go now” without causing offence.

In contrast, every workplace I have worked in has some set of secret social etiquette, hidden agendas and a habit of attributing my AuDHD traits as personal failings or attacks on others. The most challenging one for me is always when I see systems that have obvious flaws and will inevitably lead to a poor patient outcome. This is a non-negotiable to me. When I worked in retail and hospitality it would cause me physical pain to see a colleague do something the “wrong” way, but I had learnt to keep my mouth shut because I knew that ultimately it didn’t really matter, and the consequences of pissing off a colleague far outweighed the benefit of making sure the glasses were polished correctly. In contrast, there are literal lives at stake in my clinical work now, and I absolutely cannot tolerate systems that I can see are going to harm people. It makes me physically unwell.

You would think this is a good trait in medicine, and if you ask this question people will always agree, but the reality is that all workplaces have similar neurotypical expectations and undercurrents which include not pointing out the leak in the ship lest someone be unintentionally offended. It has always baffled me how neurotypical people will sit on a sinking ship bickering about what direction to steer the ship while it seems so obvious to me that the ship is going to be at the bottom of the ocean well before they get to their desired destination if they don’t address the leak.

You can’t build a strong building on a poor foundation, but neurotypical people will dance around a literal pile of shit barely holding up a doghouse and claim they are going to build an apartment complex on it. But I’m the arsehole for pointing out it is a literal pile of shit and will fall apart if even a dog goes into the doghouse let alone a person. I’m labelled as pessimistic, anxious and fear mongering. Equally, when inevitably the pile of shit does envelop the doghouse and suffocates the poor chihuahua that was shoved in there precipitating the implosion, well, then I’m the arsehole for suggesting that it could have been prevented or having the gall to suggest that perhaps next time we use something more structurally sound than literal shit.

I’ve obviously gotten carried away with my metaphors here but I hope they paint a vivid picture of the frustration and learned helplessness of the autistic person in the workplace noticing issues well before anyone else, being told they are over-thinking things or catastrophizing, and then having to witness the exact thing you were worried about unfold, and have people turn on you for pointing out it is happening during your last ditch effort to save things. The canary in the gold-mine gets too loud and so they shoot it instead of evacuating before everyone suffocates to death.

Okay, I’m done with the metaphors now.

Watching the first episode of Patience brings up so many emotions for me. Seeing things that others don’t, people assuming your intentions are bad – or that you’re a serial killer – rather than just asking you what you’re doing or thinking. Even the small moments like when she gets in the lift, realises there is 7 people in it, the sign says max 6, and she jumps out at the last minute. I feel the discomfort. The familar knot twisting in my stomach. Knowing people will think you’re anxious and stupid, and knowing that it probably will be fine, but you still can’t take the risk because it makes you feel physically sick.

Awkwardly trying to figure out when you are meant to follow someone, and when you don’t, if they don’t explicitly tell you. This was a huge one for me as a doctor in training. You had to rotate every 13 weeks and learn a new team dynamic, how the consultant or registrar operates and what they expect of you – often without a single conversation around it. I once followed my consultant to the bathroom, and they had to stop and turn around at the door to tell me they would be okay going in on their own. This happened because previously they took off without telling me to follow and I later got reprimanded for being unpredictable because they had expected me to follow without telling me this was an expectation.

I remember another time being told there was an interesting patient on the ward and to “meet me on X ward as soon as possible” so I ran straight there, awkwardly lugging my overnight bag I had with me at the time, knocking things over and being a general hazard. My boss later took me aside and told me it was unprofessional to bring such a big bag to the ward, and I should have left it in my locker. I hadn’t done that because then I wouldn’t have gotten there as soon as possible. I took the words literally.

I felt the familiar pit in my stomach when Patience bursts into the interrogation room, interrupting an interview with a suspect about to confess, because the detective told her to come to her immediately if she found anything. The look on her face as she gets yelled at, realises her mistake, and turns to leave, triggers a guttural reaction in me of a horribly familiar feeling when I have tried so hard, and managed to fuck everything up - again.

In a neurotypical world, Patience is at fault for messing up an interrogation. If we lived in a neurodivergent world then it would be the detective being reprimanded for not being clear in her instructions.

I think this is the hardest pill to swallow. When you realise that the way your brain works does disable you, but only because the neurotypical people around you aren’t willing to even consider your point of view. If you dare suggest that they should perhaps improve their communication style by not making assumptions, you are labelled as lacking insight and being argumentative – further supporting their neurotypical assertation that you are unprofessional and difficult to work with. It is a lose-lose situation.

I’m really starting to understand why autistic adults are three times more likely to be unemployed than allistic folk with a different disability, and six times more likely to be unemployed compared to the general population. Of those who are employed, 1 in 5 have lost a job secondary to their autism and many are significantly overqualified for their role.

Unsurprisingly rates of suicide in autistic folk are 3 to 5 times that of the general population. When you look at the rates among those relying on disability services it paints an even bleaker picture. Disability service users with a psychosocial disability are already 9 times more likely than those with all other types of disability to die by suicide. Among those with a primary psychosocial disability the rate of death by suicide was more than 25 times greater for those with autism as their primary disability.

Suicide makes up about 6% of all autistic deaths compared to making up around 1-1.8% of deaths in the general population. AuDHD women without intellectual disability are around 13 times more likely to die by suicide than their allistic peers. Depending on which study you look at – 1 in 4 to 7 autistic people will attempt suicide in their lifetime. For those who remain, their life expectancy ranges from 10-30 years less than their allistic peers for a variety of reasons, many associated with the harm of living in a state of chronic physiological stress from trying to simply exist in a neurotypical world.

Autistic people aren’t exactly known for their sub-text and hidden agendas so why do we keep asking them to change their communication style? The autistic person makes a statement, the allistic person assigns a hidden intention or meaning unbeknownst to the autistic person, doesn’t clarify it and then allows hurt feelings to fester. In a cruel trick we then ask the autistic person to “improve” their communication. It’s a trick because they only have control over what they say, and no control over how others interpret it, and yet we continue to tell them to do better. To change something they have no control over. The ultimate internalised learned helplessness.

We are constantly focusing on how autistic people communicate instead of how allistic people listen. I think we should be shifting to a general societal policy of “don’t hear what I didn’t say” and stop assigning nefarious meaning where there is none. In fact, it is often the opposite. Autistic people risk their own health and wellbeing everyday by masking such as adding the social fluff to requests, being conscious of not being a burden in any way and making sure to do the things that make them uncomfortable – such as eye contact and small talk – in an effort to avoid any neurotypical person around them feeling uncomfortable or misinterpreting them literally saying nothing.

Insisting on workplace accommodations so autistic people can meaningfully participate in the workforce and remain connected socially is literally lifesaving. The ultimate goal is even bigger – to create inclusive workplaces where accommodations aren’t needed. Where good intentions and competency are assumed, where both the neurotypical and the neurodivergent folk are encouraged to work on their inter-neurodiversity communication skills, and where we don’t routinely practice engrained ableist discrimination by automatically blaming the autistic person for any interpersonal conflicts that arise.

This heartbroken AuDHD gal can dream.

Need Support? If you or someone you know is struggling, help is available. You can contact Lifeline on 13 11 14, Beyond Blue on 1300 22 4636, or the Suicide Call Back Service on 1300 659 467. These services are free, confidential, and available 24/7.

In an emergency, always call 000.

For more support services - https://reframingautism.org.au/mental-health-crisis-support-services-australia/