“Not Quirky. Not Stubborn … Just Autistic”: Unboxing My Identity After a Lifetime of Damaging Labels

Written by Jessica Horner

“Autism?! Are you sure you really want THAT diagnosis? You will wear it for the rest of your life!”

My former doctor was not the only person to suggest I was seeking an unnecessary label.

“You can’t possibly be Autistic … you act too normal!!” my classmate said to me at my high school reunion.

“You can’t have Autism, you’re nothing like my eight-year-old niece?!” My neighbour’s declaration was made with seeming authority.

“You’ve made it this far … what difference is it going to make to get a diagnosis now?” my psychologist once asked me, rather obnoxiously.

For too much of my life I’ve allowed other to people define who I am. “Moody”, “obsessive”, “anxious”, “inattentive”, “pedantic”, “stubborn”, “lazy” … you name it, I’ve heard it.

These words were harmful, they dehumanised me and eroded my already low self-esteem.

Sometimes words like “quirky”, “creative”, “vivacious”, “conscientious”,  “smart”, and “fun” were used to describe me, but I rarely took the more endearing sentiments to heart.

I believed I was a defective human being; I once described myself in a journal entry as a “pile of wasted potential”.

For so much of my life I struggled under the weight of social expectations. And despite my efforts to meet those expectations (more than once) I was accused of “not living up to my potential”.

I didn’t know who I was.

But I knew for certain that I wasn’t enough.

Unless, of course, I was just too much!

Is it really any wonder that by the time I received a formal diagnosis at the age of 27, I carried in my head the notion that ‘Autistic’ was synonymous to ‘broken’?

It is easy to say that these assumptions or comments are nothing more than words so they shouldn’t hold any power. I am a journalist and words are my passion; so, I am inclined to disagree.

Words are powerful and to suggest Autistic people seeking a diagnosis should be unaffected by them, only further trivialises an already difficult path that so many of us walk.

If you still need convincing – or just want to understand more – try pausing for just a second and consider the real-life impact of the aforementioned sentiments and remarks.

My former doctor, never took the time to ask me what labels I already wore …

My classmate probably meant well, but he stigmatised Autistic people as abnormal whilst never understanding how hard I worked to maintain this façade called ‘normal’.

My neighbour was not the only person who was unable to overcome the cognitive dissonance of Autistic adults not being perpetually childlike.

My psychologist never externally voiced any of the potential benefits and support an Autism diagnosis might bring.

Through my lived experience and my work as a journalist and advocate, I’ve come to recognise that society spends a perplexing amount of time trying to fit Autists inside boxes based on preconceptions of what they believe Autism should look like.

With continuing preconceptions and mythologies of what Autism is, too many people are diagnosed as Autistic alongside the assumption that this is the wrong way to be a person.

When seeking or receiving an Autism diagnosis, too many of us flail around for longer than we should have to, trying to understand where and how we belong.

For some, diagnosis means that everything falls into place.

For others, such as myself, it takes time to achieve the radical cognitive shift that leads to the sense of self-acceptance required to fully thrive.

My experiences are not that remarkable to many within the Autistic community even though being diagnosed as Autistic should not have to be an uphill battle.

The journey towards diagnosis should never have cost me my mental health. Autism diagnosis should not be so stigmatised, even now.

Unfortunately, as I have engaged with and come to understand the Autistic community in Australia, I’ve learned that too often the supports given to Autistic people during the diagnostic process (and beyond) are inadequate and even actively cause harm.

Australian society has a long way to go before Autistic people are fully included, accepted, and valued.

I cannot help but feel that it is well and truly time society begins to unpack those boxes Autistic people are placed inside of.

Once we move beyond the stereotypes and misconceptions placed upon Autistic diagnosis, many Autistic individuals discover there is a sense of empowerment, self-worth and community that can emerge from an Autism diagnosis.

However, first we must recognise Autism for what it is – a different, but equally valid way of existing in and experiencing the world.

Nowadays, I strongly endorse the idea that an Autism diagnosis, at any point in our lives should be cause for celebration, not despair.

Perhaps it is time we do away with boxes altogether and invite others to embrace being Autistic as more than a diagnosis, and certainly not a limitation or deficit.

As an Autistic person, I have the privilege of being part of the incredible tapestry of a rich and diverse Autistic community.

As an Autistic journalist, I am fortunate to be able to platform some remarkable Autistic voices, which has led to a sense of personal belonging and celebration which was previously beyond my reach.

Recognising I’m Autistic has allowed me to be the best version of myself, and to understand myself and others with greater purpose and compassion.

But rather than tell you what this diagnosis should mean to you, I challenge anyone who has recently (or not so recently) been diagnosed as Autistic to reconcile this diagnosis, not on other people’s terms, but your own.

Having allowed myself to heal and grow over the last four years, I find myself looking back at some of the sentiment’s expressed to me prior to my diagnosis.

This is what I would say now if I was given a right of reply.

To the doctor I’d say, “Being diagnosed Autistic was one of the best things that could have happened to me.”

To the classmate I’d say, “My normal is not your normal, but my normal is just as valid as yours.”

To the neighbour I’d say, “Please come talk some more. I would like to help you see Autistic realities through a more diverse lens.”

And to the psychologist I’d say, “Diagnosis as Autistic made all the difference in the world, because it allowed me to understand and accept myself more fully.”

Finally, to those in society who are often still reluctant to fully embrace Autistic people and our lived experiences, I have a few things I would like to say too;

“What you call a diagnosis, I choose to call an identity. This Autistic identity is one I own, not you. I will no longer let other people define me or tell me who I am”.

Even today I encounter people who still question the value or purpose of an autism diagnosis.

But for me at least, being diagnosed as Autistic is not an unnecessary label to hold me back.

Instead the label of Autistic, is one I choose to wear with pride.

Jessica Horner is a Walkley-Award-nominated journalist and late-diagnosed AuDHD advocate. You can find more of her writing here.