© 2019  Ashlea McKay

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International Day of People with Disability 2016: My story so far…

December 4, 2016

 

 

 

This is the transcript of the keynote I gave at the International Day of People with Disability (IDPWD) event I hosted at my workplace on December 2, 2016. The rainbow rose came from GG’s Flowers, an amazing organisation that showcased their work at the event as a socially sustainable florist employing people with disability.

 

International Day of People with Disability is particularly close to my heart this year. It’s my first one. My first one since becoming Ability@ Lead in Canberra and it’s my first one since joining the firm back in February. But most importantly this is the first one I’ve had since I became aware of my disability.
 

I am 30 years old. I have a husband named Kris and we have an incredibly lucky black cat named Wednesday. In April this year I received the news that I have Asperger’s Syndrome. I was born with it. Now, the clinical name for it is “Autism Spectrum Disorder Level 1” but that’s quite a mouthful. So, I identify with what it was called up until March 2013. I also don’t consider myself to be disordered- at least not anymore.

I’d like to share my story with you today and I’d also like to explain what being on the spectrum means for me in real terms.

 

A lot people ask what made me seek a diagnosis. I’ve always known there was something different about me. Something slightly out of reach that I just couldn’t put my finger on no matter how hard I searched or fought against it. After spending more than 17 years battling depression and bouncing from one therapist to another to crack the code of how to be ‘normal’, I decided enough was enough.

 

Living for 30 years without that diagnosis wasn’t always easy.

 

There are a number of benefits to being on the spectrum. Objectively speaking, I am highly intelligent and I have a real knack for building technical skills in art, design and music, but there are some significant challenges.

 

For as long as I can remember, interacting with other people has always been really hard. Understanding them and being able to follow the flow of a conversation doesn’t come naturally to me. I’ve always been direct and honest to the point of offending people without even knowing what it was that I said or that they were even upset in the first place! It’s heartbreaking and incredibly confusing.

 

My quirks and I have been on the receiving end of countless acts of bullying and harassment over the years. Teachers, colleagues (not here of course- you’ve all been wonderfully inclusive), family members, university peers, other kids at school and even their parents have felt the need to harass and bully me.

 

I’ve been called weird, a monster, harsh, a bad person.

 

In primary school my desk was separate to the rest of the class because parents would complain and say they didn’t want their child sitting next to me. They said I was a bad influence. I was a free thinker and I questioned everything and everyone around me. I spent most of my lunch breaks at school by myself doing laps of the oval and imaging the school as a city in a post apocalyptic world with no people in it. My city.

 

High school was a lot worse. Name calling, damage to my belongings, physical harm and for an entire term a group of girls would get off at my bus stop and follow me home. When I stood up to my bullies, they said I was a horrible person and that no one would ever love me. It didn’t matter what I did, I found myself stuck with a bad reputation that followed me all the way to end of year 12. I found comfort in music. As soon as I had my braces removed at the end of year 7, I applied to join the school’s beginner level concert band. Over the summer break, I taught myself to read music and how to play a clarinet. It wasn’t long before I held the position of first clarinet in the senior concert band which became my happy place.

 

When I finished school, I thought that tertiary level education would be an opportunity for a fresh start… but I found that it was just an extension of high school. The name calling was a lot worse, if they thought my grades were too high they made complaints and when I was one of four people nominated for a major award at the end of university, there was some serious backlash from my peers. They said I was undeserving and was only nominated because the lecturer believed in gender equality.

 

I didn’t have a lot of support. When you hear these things from day zero, you start to believe it all. I believed I was a monster.

 

I was 6 years old the first time I saw a counsellor.

I was 12 years old when I first started showing signs of depression.

I was 15 years old the first time I tried to take my own life.

 

I spent a large part of my twenties in therapy trying to learn how to turn my life around, how to fit in and be just like everyone else, but it felt so unnatural. It wasn’t until a friend of mine was diagnosed with ADHD in their thirties that I even started to entertain the possibility of being what we call neurodivergent. It took me another year before I started pursuing it seriously and another 3 months on top of that to work up the guts to ask my GP for a formal assessment. It was the best thing I ever did.

 

I still have my challenges. I have good days and I have bad days. I have a long way to go but at least I have the complete picture of who I am now.

 

I’d like to share a little bit about what being on the spectrum means for me. I say me, because if you’ve met one autistic person- you’ve met one autistic person. The Autism spectrum isn’t a straight line of severity — I see it as vibrant as a highly detailed colour wheel with hues, shades and tints. Each person on the spectrum has their own unique configuration of characteristics.

 

Don’t think that because I am a successful and articulate adult, that my existence is ‘mild’. Clinically it is, but it doesn’t feel like it to me.

 

I take things literally. Especially instructions and rules- I take them very seriously and I get very frustrated when other people don’t follow them too.

 

I’m usually the last to get a joke- by a few months. I once told a colleague that I had an appointment at 2:30 and he said ‘Oh Dentist O’Clock!’ And my first thought was no not going to the dentist.. and I thought oh the word two does sound a bit like ‘tooth’ and I thought that must be the joke. A few months later I realised I only got half the joke — I missed the ‘hurty’ part.

 

I’ve mentioned that conversation is hard for me. I don’t always know how to start one and ending one is even harder. At big social events like conferences and parties, I usually just hover around not really knowing what to do.

 

When I do talk to someone, I will often mentally tune out somewhere in the middle of the conversation. It’s not because I’m not interested- I just can’t process it all. I also interrupt people- a lot. I’m not rude or immature, I’m just really excited and want to get the words out before I forget them.

 

Small talk doesn’t make sense to me- I don’t instinctively say good morning to people or ask them how they are unless I really want to know. When I walk past people in the hallway or the kitchen for example, it doesn’t occur to me to say hello or acknowledge them. I’m not aloof and I’m not unfriendly, it just doesn’t come naturally.

 

I don’t always understand gestures like waving. I see the movement, but I don’t immediately register that the person wants to say hello or wants me to come over.

Unwritten social rules like not eating until everyone else has received their food also don’t make any sense to me. I will eat my dinner as soon as I receive it.

 

My facial expressions and body language don’t always match how I feel. I fold arms because I don’t know what to do with them. The lines on my forehead have been there since I was 10 from pulling too many serious faces.

 

I laugh at inappropriate times. Funerals, meetings with senior executives, when people tell me their opinion. Everything is funny to me.

 

My eye contact is unusual. Holding eye contact with another person is actually quite painful for me. I will look at the floor or the wall when I’m speaking directly to you. If I know you well and feel comfortable talking to you, I might look at your ear or the top of your head.

 

I’m very focused. I can focus my attention so deeply that the rest of the world disappears and when that concentration is broken, it’s incredibly difficult to get it back. It’s a massive shock to my system.

 

Routine is very important to me. At home if I leave something somewhere, I expect it to stay there and when it gets moved I get very upset and tear the house apart looking for it until I find it. Change can be scary for me- I find it hard to predict what will happen next and I have a tendency to fixate and over analyse a situation.

 

I have a narrow field of interests- most of them are art and design based. Colouring in is my favourite thing in the world and I was doing it long before it was cool. I collect LEGO, shoes, Barbie Collector dolls and POP! vinyls. All are organised according to a strict taxonomy and I know where every single one is at any given time (provided no one moved it).

 

And lastly, I feel things more intensely or significantly less intensely. I have a very high threshold for physical pain but loud sounds leave me rattled me for several hours and a knock at the door can ruin my entire day. Bright colours and clashing prints make me feel calm and I like feeling different textures. You might see me running my fingers over furniture and walls as I go past.

 

Many people have told me that I’m brave for speaking so openly about my neurodiversity in person and on social media.

 

I know that these comments come from a place of well meaning kindness but respectfully, I disagree. I want to live in a world where everyone is able to be open and authentic about what makes them different and I challenge everyone here to help me make that happen. Approximately 1 in 100 people are neurodiverse and that number is growing. Neurodiversity is everywhere and it’s inevitable that there are more people just like me here at the firm.

 

But you know what? It’s really just a different brain and we need that. We as a community need all kinds of brains.

 

Thank you.

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