Trigger warning; this article discusses topics such as self-harm and suicide.
My name is Josephine and there is something you might not know about me.
You might find me running around campus, organising events, fangirling over typography, or talking about comic books. I am a graphic and web designer, studying Visual Communications and Interaction Design here at UC. I am the president and founder of the UC Design Society, a member of the Student Representative Council, and help out a bunch of societies.
Something you might not know about me is that I have autism.
My official diagnosis is Autism Spectrum Disorder (ASD).
This was previously known as Asperger’s Syndrome. Autism spectrum.org defines Autism as a “lifelong developmental condition characterised by difficulties in social interaction, communication, restricted and repetitive interests and behaviours, and sensory sensitivities.” 1 in 70 Australians, which is over 352,880 people, are on the autism spectrum, so even if you don’t know it, you probably know someone who is on the spectrum.
Unless you live on the Autism Spectrum, you won’t ever be able to really understand what it’s like. While I can’t speak for everyone, I can share my insight, experience, and story.
Being on the Autism Spectrum is similar to be dropped into a foreign country with no guide or language book. You’re expected to fit into society and be successful in a world that is not designed for you.
I was almost 18 when I was diagnosed with ASD.
It was an exciting time. I was about to embrace adulthood, enter university, and was saying goodbye to an important but difficult time of my life.
Still, I felt like something was missing. Something wasn’t right. When I received my diagnosis, it was like I was finally living in colour. Everything clicked and made sense.
People always told me that life isn’t fair, but I looked at other people and didn’t see them struggle with the same things that I did. When I talked about my passions and ideas I would get disapproving looks from people. My whole life I just didn’t fit in. Anywhere. After years of bullying and being treated like an outcast, my diagnosis helped me. I finally started to understand who I am.
I grew up in a small town in Queensland called the Glasshouse Mountains. Like most small towns, if you were different, you were wrong. I learned very early on that I fell into the ‘different’ category, but no one would tell me why. I was often told that I was ugly, stupid, wrong, you name it, I was called it.
My solution was to change myself into someone they would like. Then I would have friends, but most importantly, I would survive. I studied the people around me and created a new persona based on what I thought other people would like. I copied everyone else to escape the torment of school bullies and the judgemental looks of the teachers. For better or for worse, I just could never get it right. No matter how hard I tried, they still didn’t like me.
I specifically remember one time in school asking one of the bullies ‘if you could change anything about me, what would it be?’
In my logical brain, I thought she would tell me. Then I could fix that part of me, and my life would be easy. Like there was an error in my program and I needed her to fix my code. She laughed and said ‘everything.’
My heart dropped. This wasn’t an easy fix. The whole program was broken. I was broken. This took me down a journey of intense social anxiety and depression. I was always walking on eggshells, scared that anything I did could be used against me or taken the wrong way. I felt I was worth nothing.
My self-esteem was shattered. This escalated into self-harming and contemplating suicide daily. The bullying would get so bad that I would move schools. But, like a bad cold, it just followed me wherever I went.
My life changed forever when mum told me that we were moving to Canberra in 2012. I knew nothing about Canberra, but more importantly, no one knew me. This was my chance to start again. I could start to live.
Although I was still faced with bullying and trauma, I met some amazing people. They taught me that no matter how different you are, you deserve love and respect. They supported me through everything and were even more supportive when I shared my diagnosis with them. I wouldn’t be here without them.
What is the most difficult thing about having ASD?
There are a lot of difficult things about having ASD but one of the things I find myself struggling with is how I get treated by society. I am either too “functional” to be Autistic or I am too Autistic to fit into society. I feel like I don’t fit. This brings up bigger issues in my life. Even though I have a diagnosis, I still get denied support. And I still face microaggressions fairly often by friends and people who mean well. Society rejects things that do not fit, and even today, that applies to an Autism diagnosis. People on the Autism Spectrum still have to validate themselves and explain themselves to others. I have had people tell me I am using my disability as an excuse or even take it further to say that I don’t even have a disability. It is very frustrating and can be quite triggering.
What is the best thing about having ASD?
We often hear about people’s struggles on the Autism Spectrum and these are important. But I want to take some time to talk about why I love being on the spectrum.
I find that many people don’t believe that I am Autistic because of my work ethic and my need to embrace opportunities. Some might call me a workaholic and I am always getting asked “Do you even sleep?” I can do all of the things I do because of my Autism. It is my superpower.
I am extremely passionate and creative because of my Autism. I hyper fixate on details, ensuring my work is polished. This is also a part of my Autism. Most importantly, it gives me the resilience to not give up. All my life I have had people tell me that I will never be successful. That no one will love me. That I am a bad person. I have been kicked down so many times, but I always get up. I have this resilience that is so unique and powerful that I can do anything I set my mind to. Many of us on the Autism Spectrum have gone through years of torment and discrimination, so we had to become more resilient than those tormenting us. I am stronger because of everything I had to go through. I am not only here to prove everyone wrong, but to exceed their expectations.
Dealing with micro-aggressions
Though you may want to provide support and validation to a person on the spectrum, what you’re saying may be harmful. This may be triggering for the person; here are some negative micro-aggressions that many of us have experienced.
‘Everyone is a little autistic’
This is one of the most popular micro-aggressions that people on the Autism Spectrum hear. People say this to empathise and relate to people with Autism. But in reality, it is not only untrue but is insensitive. This comment invalidates people with Autism’s experiences and struggles. Just because you may have some symptoms, does not mean you are on the Autism Spectrum. It is not the same.
‘If there was a cure, would you take it?’
For the person asking this, it might seem like an innocent question, but it is quite harmful. Autism affects your entire brain, your personality, the way you think. If you take the autism away, you are taking away the person.
Please do not ask this question. It can be quite triggering as many of us have grown up in a society that doesn’t want us to exist.
The answer is of course not! Autism is not something to be cured. We are not sick or broken. There is nothing wrong with us so to suggest that we need a cure is outrageous.
If I am not autistic, I am not Josephine. One does not exist without the other. The only thing I want to be cured, is ignorance.
‘You don’t look autistic.’
This is one of the comments that upsets me the most. This comment is awful. I have talked to many people on the spectrum and they have all had this comment countless times. The response is normally along the lines of ‘what does Autism look like?’
Or my personal favourite ‘well you don’t look ignorant…’
People on the Autism Spectrum are all individuals who look and feel different, just like people who are not on the spectrum. We all have different experiences, we like different things, and are all unique. Saying that I don’t look autistic not only invalidates my experience, but it is also insulting to the Autistic community.
No one has the right to invalidate who you are because you don’t fit a stereotype.
You can never truly understand Autism unless you live with it yourself. There are still so many toxic beliefs about Autism in our society. The problem lies with a lack of communication. People are afraid to talk about it. This creates a range of issues from people not getting support because they don’t fit the stereotypes, to people facing hate and discrimination in the workplace. If you have any questions, please ask respectfully and I would love to answer them. Contribute to the conversation. We can remove the stigma together and create a world safe for people on the spectrum to live and be their true selves.