Why I Will Fight for My Autism Diagnosis

“Has anyone ever considered whether you could have Asperger’s syndrome?”

As I sat in my doctor’s office at the age of 24, this was the last thing I had anticipated them saying — and yet it somehow fit perfectly. I had never really felt like I “belonged” anywhere. Social situations made me uncomfortable; I didn’t understand people and how to interact with them. I felt alien in a crowd.

As a kid I had just assumed it was normal. Nobody had said anything, nobody had noticed. I just got told to try harder, make myself “likeable.” I tried to like the things other people my age enjoyed, but I found most of those things either confusing pointless, or boring. Instead I related to adults, or else just to myself and my own company. I didn’t really understand the bubble of isolation I was creating for myself, or that it would only grow larger as I got older. As a friendless child, it was my sphere of protection.

I was called sensitive and told to “toughen up.” But even when I tried to be tough, sometimes the tears just happened. A raised voice was enough to bring me to tears, and my first reaction when I thought I was in trouble was to cry until I was red in the face. I couldn’t control it; it would just burst out of me. Even now as an adult, this still happens. I’ve yet to enter a tense environment and not leave in tears – any kind of confrontation, important talks, or heated exchanges… you can bet the waterworks will start. I didn’t understand it as a child. I associated tears with sadness. But now they’re more often an expression of sheer frustration, bursting out of me the only way it knows how.

I used to joke that I still had temper tantrums, but as time went by and they became more frequent and more violent, I made myself stop referring to them as that, even as a joke. I know now these are meltdowns – and meltdowns are exhausting. They usually happen just after the straw breaks the camel’s back. Once the little things add up and up and up, and all of a sudden everything just feels too much. Crying, screaming, and self-injury usually ensues, before I inevitably collapse on the floor, drained. As a child, these kinds of fits are understandable and excused, but as an adult, I’m judged for them, and often mocked for them too. But sometimes stress, emotions and just life in general can bombard you with so much sensory overload that the only way to let it go is to… let it go.

There were tics and traits that went unnoticed, that have continued since childhood. I’ve been obsessed with tugging on my ear – the left one specifically – when I am thinking, or when I am confused or uncomfortable. I can’t stand the sound certain fabrics make when they rustle, or the way they feel when my nails or skin touch them (this made clothes and bedding shopping painfully difficult for my poor mum when I was a child, and not much easier for me now).

The smell of fresh lemon makes me gag, anything with chili makes me choke, and when it comes to taste, I have always been awful with food. I was considered a picky eater as a child, but as an adult I worked out it was much more sensory than “picky.” Most of the foods I disliked had a texture I didn’t like. It was slimy, briny, mushy, bobbly or ready to burst (to name a few). I liked food I could eat with my hands, foods I could keep separate from each other so the tastes didn’t mingle, and food that was familiar. Any of these sensory situations stressed me out to no end, and would lead to some form of meltdown, whether an outburst, tears or full-on.

I never really understood social cues. As a kid, I didn’t realize when someone was laughing at me. I couldn’t work out if I was the butt of a joke or if someone was just interested. As I got older, things like handshakes, fist-bumps or even kissing cheeks didn’t come easily to me. So many times someone leaned in towards me and I would just stare at them, or perhaps move in a little closer, before eventually mimicking their actions and putting my cheek to theirs. These actions are not instant for me, and are often tinged with embarrassment.

I’m offensive. Or rather, I say offensive things. It’s never intended to cause insult or injury to anyone. It is just what comes out of my head, no filter applied. To me it’s hard to see where the boundaries lie in any conversation. For some people the sky is the limit in the terms of what they find hilarious, while others may find the same joke rude. My brain doesn’t process all this switching – there’s way too much going on in there. Here’s the thing though – if you tell me I’ve offended you, I’ll apologize. If you don’t, I won’t, because I just won’t know I’ve done anything wrong. But even under all of the sarcasm and offensive comments, I’m a good person, and if I’ve hurt you, I will try to fix it. Regardless of whatever it is that’s made me like this, I still do my best to do what’s right.

It’s weird, because looking back, it baffles me that it took someone 24 years to ask this question. But the simple truth is the health system is failing women on the autistic spectrum. Asperger’s (and other ASD) often present differently in women than they do in men, and for this reason, we are often forgotten. It’s missed in childhood, and misdiagnosed in adulthood as mental health disorders. We are not getting the support that can help us understand a very vital piece of the puzzle that is our life, and something here needs to change.

I’m now 25 years old and going through an adult Asperger’s assessment process – one that can take a very long time to complete. But I’ll wait. I want to complete this puzzle and see if it adds clarity to the picture of my life.