An autistic adult on life as the perpetual villain
If the bullies are to be believed, I am a bad person. In fact according to them, I’m the bully.
When my telecommunications provider’s gross incompetence and poorly designed backend systems resulted in me having to spend almost 3 hours instore one afternoon running around in circles and walking out worse off than I went in, I was met with shaking heads and patronising comments from staff and other customers for daring to call out the ridiculousness of the situation. Notice how I said situation — I repeatedly assured the staff instore that I understood they weren’t responsible.
When the checkout operator at my local supermarket asked me a question that I did not understand the meaning of, I was verbally abused and called ‘racist’ by the other shoppers waiting in line behind me simply for telling her that I didn’t understand what she was saying. It had nothing to do with her or her voice — I literally did not comprehend the meaning of the words that were coming out of her mouth. I had to start wearing a medicalert bracelet after that incident for my own safety and to support me should I ever struggle to explain myself or be wrongfully accused of something so heinous ever again.
When I was anxiously waiting at the airport with less than 10 minutes to go before being pre boarded onto my flight, I misunderstood a sign at the gate cafe offering a free bottle of water to passengers seated in the cabin class listed on my ticket. I was yelled at and accused of being rude by both staff and customers. They didn’t understand that I didn’t have 20 minutes to go and ask a stranger for something I didn’t fully understand — let alone the executive functioning needed to pull it off. They yelled at me saying they “couldn’t serve me” and I told them I wanted to pay for my bottled water because I was short on time which landed me in more trouble and having to whip out the medicalert bracelet to explain not only that I was about to be pre boarded but also why that was happening.
I’m a late diagnosed autistic adult living in a socially driven world that wasn’t designed for me.
My daily experience is one of extreme intensity and I don’t instinctively know how to interact with other people. Unless I’ve known them for a long time, I don’t understand people — what they want, what they need or what they mean when they say what they say.
My disability is invisible. Unless I tell you, you might not pick up on it. Confused, aloof and constantly amused — no matter how inappropriate — are my default settings and my facial expressions and tone of voice rarely match how I really feel inside. You cannot tell what is going through my mind just by looking at me. The thought patterns and processes running behind my eyes are very complex and performed under the duress of an intensely heightened sensory experience. Loud and unexpected sounds, bright light, persistently annoying sounds that cannot be placed and crowded public spaces have an enormous negative impact on my ability to function — let alone participate in a conversation in the way others need me to.
I’m the villain of just about every story.
Presumed to be rude, hostile and offensive without consideration or a chance to explain or demonstrate otherwise, I’ve been verbally abused by complete strangers in public for reasons I’ve never fully understood until someone explained it to me later. People often misinterpret my behaviour as threatening or malicious in intent and they act accordingly. I’m dangerous and antisocial and they often feel the need to jump in and save the day.
My anxiety is often mistaken for rudeness, my frustrations have been misinterpreted as a sign of hostility or combativeness and interactions can escalate long before I really know what’s going on. Miscommunications and misunderstandings are a daily occurrence for me. I’m nearly always hit with the full force of the blame and if I dare to point out the role of any third party people or factors for contextual purposes, I’m condemned even more.
I was once threatened with physical violence by two other customers one night at a self serve checkout at a large department store. It was over a conversation I was having with a staff member about the frustration I felt regarding the overly complicated self checkout process. The UXer in me knew the problem easily be fixed and never in a million years did I think that it would result in a stranger feeling the need to intervene in that conversation and verbally attack me.
I was wrongfully accused of bullying and forced to deal with two complete strangers shouting ableist insults at me like: “It’s not her fault you’re too dumb to work the machine!” I ignored these people and didn’t engage. I did everything you’re supposed to do to diffuse the situation and in that moment, I felt sick, terrified and completely confused. I stayed quiet and dragged my heels through the convoluted process so the yelling strangers would finish up before me and leave, but they were waiting for me outside when I left the store. They were yelling, swearing and threatening to hurt me. They didn’t follow me but I was shaken and scared. I wasn’t alone when this happened. I was with someone who always tells me the truth and they assured me that they felt I hadn’t done what those strangers said I did. More than 6 months on, I still can’t use the self serve checkouts at that store.
Like many classical villains, I’ve received more than my fair share of hate mail and one time it came through the local postal service instead of my email inbox. The letter referred to an incident that had occurred the week before when my husband and I had backed out of our driveway only to find a car blocking us in. Someone — a visitor of one of our neighbours —had parked across the two driveways. We were on our way out to dinner and we were late and we couldn’t get out.
I sat for a minute not really knowing what to do about this situation. I thought about cancelling dinner and just going back inside. I thought about writing a note but decided that wouldn’t accomplish anything and make me just as bad as the inconsiderate owner of that car. I thought I could knock on their door but the sound of a knock at my door really hurts me due to my sensory differences and I didn’t know if it might also hurt someone in that house.
I told my husband we should just wait a few minutes and see if someone comes along to claim it. Sure enough someone did. My husband got out of the car and I heard him ask her “Why did you park like that?”. She responded with “Oh I’m just visiting a friend”.
He repeated his question and feeling like he probably wasn’t going to get anywhere with the discussion, I climbed out and told him to get back in the car. She told me “Sorry, I’m just visiting a friend”, and I said “Fine. But you need to learn how to park”. That was all I said to her. She got in her car and left and we went our way too. It was late autumn 2017 and I remember we were having trouble with our car making embarrassing revving sounds as the heater kicked in and my husband accidentally bumped the horn while reaching for the dial to turn it down. We were stressed, frustrated and with an accidental horn honk in the mix — yeah, it looked bad.
But I never thought I’d receive a page long tirade of insults in the post over it. We were called “stupid”, “vile”, “disgusting” and “not normal” because we didn’t knock on the door of the house and ask how much longer she was planning to block our driveway for. She said that she “hoped” our lack of social graces meant we were “having a hard time and that something bad had happened” to us. She told us that she feared for the wellbeing of any children we may have and that if we didn’t have any children, we should keep it that way to “avoid creating more weird people” like us. She said we were “pathetic” for “revving our car and honking the horn” — apparently our heater issue made her “chuckle”. And then at the end I was fat shamed. Not once but three times. I guess the point that she prevented us from using our own driveway was completely lost on her and somehow the entire incident was our fault. Sure, we could have handled it better in the moment, but did we really deserve hate mail telling us we shouldn’t have children for it?
I’m accustomed to being written off and not taken seriously. My skills and experience are too often viewed as a threat that is confirmed the second I reveal myself to be intelligent or come up with an idea that is viewed more favourably than someone else’s. I’ve experienced sabotage in academic and professional contexts and have been accused of taking resources that belonged to others who were more worthy.
I remember being blamed for other peoples’ poor planning while I was still at university. The lecturer wanted to talk to everyone individually about our projects and halfway through the class a group of students announced they needed to leave in ten minutes for a university approved volunteer gig. And at that moment in time, it just happened to be my turn to get feedback on my project. I looked at the lecturer because I didn’t know what to do. These particular classmates made my time at university a living hell. They bullied me and tore me to pieces every chance they got. I was afraid of them. I hated them too and I feared the consequences of provoking them. The lecturer ignored them, pulled up a chair next to me and asked to see my sketches.
My bullies got pretty angry but not at the lecturer for ignoring them. No, they were angry at me for taking their feedback time away from them. Nevermind the fact that they could have approached the lecturer earlier in the class or made an appointment to see him. He was nice and had two afternoons a week set aside for walk ins. They acted as though they believed they had more of a right to time with the lecturer than I did. I wasn’t an equal to them.
When I was one of four nominees put forward by my university for a nationwide award at the end of my final year, those same bullies were outraged. They claimed I didn’t deserve it and said I only received the nomination because our then course convener “believes in gender equality”. They also seemed to think that I should have turned it down and taken steps to have someone else put forward in my place. They weren’t seen by other students as sexist, sore losers but rather a group of wronged individuals who deserved action.
Service providers and strangers in public don’t take my needs seriously. I’m grilled about my neurodiversity on a regular basis by people who frankly have absolutely no business knowing about it and when I stand up to them and assertively refuse or attempt to steer the conversation back to its core purpose, I’m labelled as ‘difficult’, ‘rude’, a ‘liar’ or sternly told in a raised voice to ‘calm down’. I’ve been mocked for not instinctively knowing the difference between left and right (yep that would be a ‘L’ to the forehead and even I know that doesn’t mean left!) and shunned from public group activity environments for providing honest (and respectful) feedback. FYI I know it was respectful because I wrote it down and had a trusted person proofread it to ensure I hadn’t been too direct!
The few complaints I’ve lodged regarding my experiences being bullied have all been dismissively pushed aside and have led to victimisation. I was bullied through all levels of schooling and while my two most recent workplaces have been amazing and have resulted in me being wonderfully workplace bully-free for over 2 years now, it hasn’t always been like that.
I was 19 when I learned to keep my mouth shut about workplace bullying. I spoke out against a group of colleagues who were taking extended lunch breaks because it was a rostered work environment and not only was it unfair, but it was also putting pressure on the team during a peak time for the store. They said I ‘lied to get attention’. I was the bad guy working for a real villain who then had free reign to do whatever they wanted since the manager ‘warned’ them about me.
My advocacy work has also attracted an extensive amount of abuse. I’m the evil PC wielding fun police with the audacity to ask for a rational two way conversation in which people actually listen to each other and work towards a common goal of achieving equality for all. I’ve been told I’m “not disabled enough” and that I’m jumping on a “bandwagon” in “an attempt to appear interesting”. I’ve also been told by the parents of autistic children that I “must have grown out of it” and that I “couldn’t possibly understand their misery”. They say I “lack empathy” and also that their children are “more evolved” than me because “they want to change and become normal”. I’m often treated as though only villains are OK with being different because apparently constantly questioning the concept of ‘normal’ and seeking to educate people on the reality of autistic life is bad.
I’m not allowed to have an opinion that differs from others’ and I repeatedly find myself being called “bossy” and a “bitch” — online and in person — and no one seems to have any qualms about that. It’s OK to insult me and treat me like a piece of garbage because I’m a ‘bad person’.
Look, I could share stories like these until the end of time. I don’t even know how many of these experiences I’ve had and they’ve led to some pretty dark times for me.
In these moments of despair, I used to twist myself into knots trying to understand why it kept happening. I reasoned that since I was the common denominator, it must be my fault. When a man was convicted in a court of law of stalking me, people asked me what I did to provoke him. They made me feel like it was my fault and that I was a terrible person for finally calling the police to put an end to it. No one asked me if I was OK or how long it was before I no longer woke in a cold sweat thinking I heard footsteps on the grass outside my home in the middle of the night. No one cared that I had what I now know to be an epic autistic meltdown on the stand while being cross examined. No. I was just ‘the girl who cried in court’.
For a really long time, I genuinely believed I was some kind of monster. An evil creature who didn’t belong and couldn’t socially function well enough to exist among society. I attempted suicide 3 times between the ages of 15 and 20. I believed what they said. And then I got diagnosed. I learned about my brain and what it means to be autistic. I discovered that I am not monster but rather a person worthy of the same love and respect as everyone else.
Over time, I’ve also learned that there are a lot of public misconceptions around what autism actually looks like and how it manifests differently from individual to individual. Some people don’t even know what it is. When I first got diagnosed (at the age of 29) my mum told me she thought it meant I lacked self control and manners! People don’t always know how to spot it. They can’t always tell the difference between an angry person and an autistic meltdown. You can’t see the internal mechanisms of someone who is being completely overwhelmed by their environment and drowning in confusion, misfired thought processes and stimuli.
Does that any of that justify their abusive behaviour? Absolutely not. I’m a human being. I just have a different brain. I’m not better than you, I’m not less than you, I’m just different. Autistic people are not the enemy. I am not the villain some people seem to think I am. Communication is a two way street — I accept responsibility for my half and work damn hard to fill in the gaps in other ways. I’m really good with patterns and logic puzzles and given enough time and patience, I can use those skills to meet people halfway. I can communicate. It’s just a little bit different and it might not give you the warm fuzzies you need but please know that I do care. My lack of eye contact is not a microaggression, I’m not deliberately trying to hijack the conversation and my directness and lack of small talk is not a sign of brusqueness.
Before I leave you, I have a small request.
The next time you’re out and about and you see someone who looks like they might be having a hard time, instead of vilifying them, ask them if they are OK. Ask them if you can help them or offer to solve the problem with them — ie do it together. Don’t call them names, don’t yell at them, don’t patronise them and do not tell them to calm down because that makes things so much more heightened and stressful. You can diffuse the situation and support everyone just by offering to help in a constructive way. The people that intervene and shout at me potentially believe they’re being helpful. They might even think they’re the hero of the story, but blowing the whole thing up and taking sides when you don’t fully understand what’s going on, isn’t helpful! Give people the benefit of the doubt. You literally don’t know exactly what is going through their mind at that particular moment. By being just a little bit open to the possibility that there’s more to the story, you might actually help support an autistic person who could really use just a little kindness and understanding.