My autism diagnosis was a relief, but that was the easy part

Person receives diagnosis in warm healthcare office


My autism diagnosis was a relief, but that was the easy part

About the author: Smudge is a chronically ill, transgender, autistic artist and advocate working on stolen Wurundjeri Woi-wurrung land. They use a multidisciplinary approach to champion accessibility and inclusion, working to arm their peers with tools to self-advocate and express who they are. 

I have spent most of my life unaware that I am autistic.

Now at age 23, with my recent diagnosis, I can’t decide if I am proud to be autistic, or just relieved. 

As a child, I was labelled ‘quirky’ for following my offbeat passions, preferring to spend hours sorting my gemstones into categories rather than play with others. I didn’t fit in with the kids at school, and I didn’t really want to. The other kids picked on me, and I couldn’t understand why. I mostly just avoided other people and spent lunchtime lost in an imaginary world. 

Things changed when I started high school. I vividly remember the first day of Year seven. As a teen, I desperately wanted to belong, and reasoned that with a fresh start at a new school I had a chance to make some friends. At recess, I approached a group of girls and introduced myself. They shared knowing glances and stifled giggles as they shared their names in turn. At the time, I didn’t understand exactly what just happened, and walked away baffled.

I was eating my morning snack alone in the quad when it hit me. 

They were using fake names. 

I felt so humiliated. How did this group of people I had never met know within seconds that I didn’t belong? I went over the interaction in my head. I couldn’t see my mistake. I did everything according to the plan I had previously devised in my head. I made sure to sound confident and friendly. I didn’t mumble. I could not understand how they knew I was different from just an introduction. 

It wasn’t until uni that I started to put the pieces together. 

There’s a note in my phone titled Reasons I think I have autism. Last edited October 14, 2019. Here is an excerpt: 

  • Struggle socially 
  • Can’t read the tone of the room
  • Overly friendly towards strangers

It took about a year of internal reflection and following accounts on Instagram like @fidgetsandfries and @neurodifferent to feel certain that this is the label that describes me. I didn’t pursue an official diagnosis at first. I didn’t need a piece of paper to tell me what I already knew. 

I am autistic. 

Holding that label in my mind brought so much relief. Finally, I understood what those girls in high school knew instantly. I am different. 

But I am not broken. There is nothing wrong with who I am. And there are other people like me. I belong. 

Since then, I’ve found autistic traits scattered throughout my life. Each one feels like an important discovery. They bring me a step closer to fully understanding and accepting myself

I have a cat. Her name is Mog, and she is very fluffy. My connection with her is stronger than any I have had with another person. I understand her completely. That’s an autistic trait. Sorting gems, plastic or mineral, brings me a deep sense of calm. That’s another one. I get excited by small, seemingly mundane things. Spotting my favourite bird in the park. Stepping on a crunchy leaf. These things bring me unbridled, child-like joy. Autism trait.

Not all of them feel positive.

When I laugh at an inappropriate moment, or don’t get the joke, I feel humiliated. It’s frustrating to spend hours staring at a wall because my plan for the day was disrupted. I’m embarrassed by how easily I get lost in unfamiliar places. Knowing I am autistic helps me to accept these things about myself, but it doesn’t make my experience of them any easier. Yet, I am reassured knowing that I am not the only one to struggle in these ways, and that these feelings aren’t my fault. 

I was relieved to discover that I’m autistic. Unfortunately, that was the ‘easy’ part. 

Confronting ableism and inaccessibility is a little trickier. Like missing out on LGBTQIA pride events because they are too loud and crowded for me to handle. Becoming exhausted at work because the fluorescent lights in the office drain my energy. Spending significant money and time pursuing an official diagnosis to access essential services. 

At least with an understanding of myself as autistic I can identify my needs and advocate to have them met. I now know to bring noise cancelling headphones to loud events (that are still inaccessible to me anyway). I can ask for alternative lighting at work (and hope that there’s room in the budget).

Although getting the diagnosis was an expensive and exhausting process, it allowed me to eventually access the National Disability Insurance Scheme (NDIS), and I’m able to engage support workers to assist me with daily living multiple times per week. This is a win.

For many others, however, barriers to diagnosis are further compounded by ableism and discrimination in employment. Those who can’t work rely on Disability Support Pension (DSP) for income. But to access DSP, you need a diagnosis, for which you need to have an income. It’s a catch-22.

As much as autistics usually prefer certainty and order, autism is messy and complicated, and ableism further so. So, today, I am holding space for all my feelings about who I am as an autistic young person, while also acknowledging the privilege I have had to get to where I am today. 

Editor’s note: The author identifies with identity-first language.