…

Falling Through Dreams.

Surrendering to Despair

Autistic women aren't as rare as you think

Did you know that women are a lot less likely to be diagnosed with Autism Spectrum Disorder? And no, this isn't necessarily because autism in women is just a lot less common. It's because autism in women usually presents itself very differently than autism in men. Autistic women often get misdiagnosed with anxiety disorders and/or Borderline Personality Disorder. And to be fair, anxiety disorders, BPD and ASD all have quite a lot of similarities.

The damage of being diagnosed with ASD later in life is bigger than you might think. I know this too well. For as long as I can remember, I have felt different in comparison to my peers. I could never put my finger on it, but something about me felt different. Not even just different, no, I felt wrong. There had to be something wrong with me.

I remember a conversation I once had with my mum, although I doubt she remembers this. I think I was about 9 or 10 years old. She had just picked me up from school and we were sitting in the car, when I said to her "I'm special, aren't I?" My mum of course responded by saying how special I was because of how kind and funny and smart I was, because my mum has always been my biggest fan. And I remember I quickly stopped her and said "no not like that, I'm weird."

Weird. It's something I've been called a lot in my life. Most times, it was told jokingly by my friends and family. Other times I was being called weird by bullies or by teachers who should've never started working with children in the first place. I've always known I was weird. So when my friends called me weird for taking something a bit too literally, I honestly didn't mind. As a child I liked being weird. Being weird meant I was being true to myself. As I got older, I noticed that being weird wasn't all that it was cracked up to be. Before I knew it, people thinking I was weird became a subconscious fear of mine. Being weird meant I was myself, yes. But it also meant I didn't belong. Being weird confirmed that I was different, special. That I was wrong.

I was about 9 years old when autism was first suspected. I was making repetitive movements all day long. The movements looked a lot like stimming, something that a lot of autistics do. I don't really remember the test they did. All I remember was that I really liked my psychologist, Sarah. We were always in a room with lots of toys. I remember that my mum once explained to me what autism was, and why they thought I might be autistic. She said "autistic people don't see the big picture, they see a bunch of small things." As an example, she said that autistic people don't see a house, they see windows, a door, walls, etc. I told her I wasn't autistic, because I always see a house. In hindsight, it is pretty ironic to see how literally I took that explanation. Taking things 'too' literally, another sign of autism.

A few weeks after that, Sarah told me that she didn't know if I was autistic or not. In her words, 50% of me was autistic and 50% of me wasn't. They ended up not diagnosing me, and referred me to a hospital to see if it wasn't actually epilepsy.

No, I don't have epilepsy. We later found out I have something called Stereotypic Movement Disorder. Which I will elaborate on in a later post.

For years to come, that would be the closest I'd ever come to an ASD diagnosis. I was also tested for ADHD a few times as a teenager, but to no avail. As I grew older, the feeling of not belonging grew stronger. I was always wondering why I felt like such an outsider, maybe it was just all in my head? I was diagnosed with generalised and social anxiety when I was 16, which I thought could explain the feeling of being an outsider. But if that feeling was caused by anxiety, why did I have that feeling all my life?

When I was about 19 years old, I started suspecting I might be autistic after all. I asked my mum what the reasoning was of my psychologist all those years ago to not diagnose me. Apparently, I met all the diagnostic criteria. But because I had empathy and a lot of fantasy, I was not diagnosed. Since then, I have been fighting for an official diagnosis. I wanted to see on paper that I was diagnosed with ASD.

This was insanely hard to do. I tried talking about it to my psychologist, who dismissed me by saying I didn't need another diagnosis. Whenever I tried to tell someone about my struggle with getting diagnosed, I'd often hear "but you don't seem autistic". I'd get asked why I thought I could be autistic. I'd give my reasons and as a response I'd hear "well you might be on the autism spectrum but not enough to be considered autistic."

I was begging people to do a diagnostic test. I needed to prove that I was right about this, and how much it would help me. Even if we did the testing and it turned out I wasn't autistic at all, I could at least let that idea go and go on with my life. It was so frustrating that nobody believed me. My mum and my partner were the only people who actually believed I was autistic when I told them my reasoning.

And then, an angel in the form of a psychiatrist turned up. After only a few minutes of telling her about myself, she asked me if I was ever diagnosed with ASD. This resulted in enthusiastic rambling on my part. I told her everything, how I felt out of place, how I was almost diagnosed, about the repetitive movements, etc. She is the one who ended up setting up a diagnostic exam for me. And this year in August, I was finally officially diagnosed with ASD. The psychologist who did the diagnostic test told me this was one of the most obvious cases of autism he had ever seen.

You have no idea how relieved I was to finally, FINALLY be diagnosed. That feeling of being different, being wrong. No, there's nothing wrong with me. I'm autistic, that's it. My psychologist, who kept dismissing my suspicions, later told me she didn't want to see if I was autistic because she thought I was looking down on myself. Never once have I seen being autistic as a bad thing. It's just who I am, that's it.

Now I live through life, knowing that I am autistic. That feeling of being out of place, something I've had all my life, is gone. I cannot even describe how liberating it is to have that burden to be lifted from my shoulders. A part of me is angry though. I have been begging for years for help with this. And time and time again, I was ignored or dismissed. Often just being told it was some type of anxiety. I also wish that my psychologist all those years ago didn't refuse to diagnose me. I met all the diagnostic criteria, that should've been enough. Imagine if I was told I was autistic when I was 9. What that meant for me, why I felt like I was different, that there was nothing wrong with me.

Please, believe women when they say they think they're autistic. You have no idea how much you'd be helping us.

lain iwakura

I feel like life was very black and white as a kid. There were straightforward rules everywhere; posted signs and adults telling us to do this, don't do that, say this, respond this way in this situation. But the older i get the grayer life gets. Situations are complex and have good and bad mixed. Right and wrong is subjective. No one taught me how to live in between points on a spectrum.

"I Don't Have a Routine"

For those who are seeking diagnosis, think they might be autistic or are already diagnosed/self-diagnosed but just confused

Routines/rituals aren't just getting up at the same time every day.

What can routines look like for an autistic (just general examples, not an exhaustive list):

Getting dressed in the same order. A change of this feels very upsetting.

Eating your food in a particular way. This may be eating each food individually, combining food in certain ways, not letting foods touch etc .

Getting ready for the day in a very particular way, specifically the order and time given to each activity. Being forced to rush or skip an activity is very upsetting.

Only going to certain shops, even if they are out of your way, because you've been there before. The same shop in a different suburb is too distressing.

Driving the same route to places. Suggested short cuts, or lane changing without mental preparation etc is very distressing. You would rather stay in the slow lane you 100% know takes you home than go down a new street.

Showering/bathing in the same order.

Stacking dishes or cleaning in a very specific order such as sink first, then counters, then stove etc. This order feels important but you cannot state why.

Work plans or school plans are day specific. You struggle to do banking on a Thursday, because that's a Friday activity, even though Thursday is just fine. But it's a Friday activity...so can't do it today.

To outsiders these routines/rituals seem to have no purpose but they are sacrosanct to the autistic individual. Changes must be given time, with lots of notifications and check-ups to ensure we're accepting the changes.