As a child, I didn’t really feel like a burden because I was lucky enough to have people working with me to help me get over obstacles. I had a lovely OT and speech therapist, supportive doctors and parents who didn’t see my disability as a negative.
This all changed massively when I went out to work at sixteen and I realised I had been living in a safe but naive bubble where everyone in it had understood me as an autistic person. Now I was out in the big world where most people’s experiences of autism where Rainman or Sheldon Cooper.
As a teenager I didn’t yet realise I had to advocate for myself, or that there would be grown adults who didn’t know how to understand me, and so I got into a lot of trouble. I was too loud, talked about things that were too inappropriate for the workplace, didn’t work fast enough, moved around too much and was just generally a hard person to work with. It was at this age that I began to learn how to mask, desperate to fit in and not be a burden on anyone.
I hated the feeling of being disliked, having been bullied throughout my childhood, and I so desperately wanted to have friends.
This kicked off a cycle where I’d work in a place for a year and then have to quit because of burnout. I wasn’t aware what was happening to me and just blamed depression, but now I realise that masking was taking up all my energy and in not being myself, I would end up crashing.
It wasn’t safe to remove the mask, however. If I ever talked about being autistic, there would be so many uneducated comments and I simply didn’t have the energy to educate everyone.
“But you don’t look autistic, you must be very high functioning.”
“I suppose we’re all a little bit autistic though.”
“You cope very well, I wouldn’t have guessed!”
If I’d have had just one educated person in my corner, they may have spotted that I was masking my autism so that I wasn’t excluded, causing myself burnout. They may have spoke up for me and got me the right accommodations and freed me from this seemingly endless cycle, but such a person didn’t exist. I had to do this on my own.
In my late twenties I began being more active in the autistic community on Twitter and learned so much about myself as an autistic person, including the affects of burnout and how to advocate for myself. I was causing myself a huge amount of damage by trying to be neurotypical, and yet I didn’t feel safe enough to show the world who I was. In a fit of bravery I did try asking for accommodations so that I could heal from burnout and regain my agency, but this was denied and my colleagues didn’t understand why I needed this sort of help. Another side effect of masking is that neurotypicals believe what they see, and they saw me as a capable neurotypical even though I was drowning.
My breaking point, when I knew I needed to change my path in life, came after a really bad experience at a new workplace. I was extremely burned out and struggling with depression and I couldn’t even find to energy to mask. My executive dysfunction reared it’s head and I began struggling to communicate verbally and understanding social cues. Though that is a daily struggle for me anyway, it became much worse and triggered my anxiety. Unfortunately it meant that I was seen as a depressive person who was causing drama and was told I was creating an “atmosphere” and that my moods were erratic. I could barely process my own emotions and understand what was happening to me, but once again I was the problem. AKA I needed to get my act together and behave like a well functioning neurotypical again.
The irony is that everyone knew I was autistic, but they just don’t realise what that actually means and how it differs between each person. There are no high or low functioning autistics, we just have different skills and struggles which can change depending on fatigue, mental health and wellbeing. It was laughable that I as an autistic person, who struggled with facial expressions, tone of voice and regulating my emotions was being called out for having the wrong facial expressions and moods.
“We just don’t know what mood you’ll be in daily.”
“We’re having such a problem with you.”
“It’s like you want everyone to know you’re in a mood.”
I wasn’t at all surprised to know I wasn’t the only one going through this. In the week I quit my job, I found an article published by Unwritten about a scientist who had been let go from the team because she wasn’t displaying the right facial expressions or tone of voice. Microsoft also published a story of a man who had to put a sign on his office door, explaining that his facial expressions and the way he said things didn’t carry any negative or malicious intent -it was just him being autistic.
I’m pleased to say I managed to find a workplace who not only understood autism and other disabilities, but who also listened and was willing to learn more. I was given a risk assessment, stim toys and movement breaks and space to talk about how I was feeling. Colleagues would check in on me, but would also give me space to just be me instead of calling me out for whatever look was on my face. Instead of small talk and banter, I was given the space to infodump and share my interests, as well as partake in parallel play and a more gentler way of socialising. I am incredibly lucky to now be supported, however it doesn’t change the fact that there are still so many autistic adults struggling in the workplace because of misinformation and stigma.
I believe the problem lies with the image the public have of autism. In the media, we show autistic people as nuisances who cause problems for everyone, or loud, chaotic children who make their parents suffer. Negative connotations such as “struggles, problems, suffering” are always linked to autism by medical professionals and the media, despite an active autistic community advocating to be rid of these stereotypes. When people talk about autism, they give the stage to parents of autistic children or neurotypicals studying autism, instead of autistic people themselves which silences us.
If adults held themselves accountable and began learning about autism properly from those who were actually autistic, life would get better and we wouldn’t face so much discrimination. It isn’t a lot of effort to follow autistic advocates, writers and bloggers and read up on their work, or have autistic speakers come into the workplace to do training and help make the workplace more accessible.
Autistic people shouldn’t have to spend a lifetime masking or trying to speak out, just to be met with ignorance, and they definitely shouldn’t be punished for struggling or presenting differently to neurotypicals. However this world still remains ignorant to the treatment of autistic people, as many neurotypicals simply do not care enough to educate themselves and truly see other people.
I see it every April, during Autistic Acceptance Month, when neurotypicals will post one tweet saying “listen to autistic people” but will then do nothing to support the work we do or lessen the burden. The media will give platforms to parents of autistic children, painting them as inspirational and brave and ignoring the child’s voice entirely, and after April the world will go back to its usual abelist self.
Clearly, we have work to do.
Send me a smile