This is the transcript of a presentation I gave on 3 March 2017 at the Case Manager Forum hosted by The Rehabilitation Specialists in Canberra, Australia.
My name is Ashlea McKay. I am a User Experience (UX) designer in the consulting space at PwC here in Canberra. Outside of my everyday role, I am both the National Co-Lead and the Canberra Office Lead for an internal volunteer based network called Ability@PwC. The network champions ability of all kinds and focuses on what a person can do rather than what they can’t.
In April last year at the age of 29 (and a half) I received a life changing medical diagnosis.
I found out that I have Asperger’s Syndrome. I was actually born with it. Now, the clinical name for it is “Autism Spectrum Disorder Level 1” but that’s quite a mouthful. So, I primarily identify with Asperger’s which what it was called up until March 2013 and I also prefer identity first language and refer to myself as ‘Autistic’ and an ‘Aspie’. I also don’t consider myself to be disordered.
When I received my diagnosis, I had only been with PwC for a few months but the response I received across all levels of the Firm was overwhelmingly positive.
Fiona has invited me here today to share my story with you. I’m going to start by briefly touching on what life was like before my diagnosis, then I’ll share my experience at PwC, I’ll close out with some thoughts and ideas on supporting diversity in general and then I believe we have some time for questions at the end.
A lot people ask what made me seek a diagnosis. I often hear people say “It’s just a label, why do you need it?” My answer is always the same: in order for me to fully understand my differences, I needed to know why they were there in the first place.
I’ve always known there was something different about me. We often hear people talking about square pegs in round roles- I’m more like a unicorn shaped peg that doesn’t fit in any holes.
It took me a really long time to realise that this is a good thing.
Interacting with other people has always been really challenging for me. Understanding them, relating to them and being able to follow the flow of a conversation doesn’t come naturally to me.
Small talk doesn’t make sense to me. I’m quite comfortable with silence and I really don’t want to talk about the weather. 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, I’m just focused and on a mission.
I’ve always been direct and honest to the point of offending people without even knowing what it was that I said or that I’d upset them.
I take things literally. Especially instructions and rules. I’m also usually the last to get a joke- by a few months. Especially Dad jokes.
Unwritten social rules like not eating until everyone else has received their food make no sense to me. I will eat my dinner as soon as I receive it. And if that food happens to be ham and pineapple pizza I will pick the pineapple off because I think warm fruit on pizza is weird and no I can’t just order it without the pineapple because the juice has to soak through while it cooks.
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.
I laugh at inappropriate times. Funerals, meetings with senior executives and from the front row at a conference in the middle of the keynote when there isn’t actually a joke being told (true story). Everything is funny.
I cry when I’m stressed.
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, 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 is incredibly difficult to get it back.
Routine is very important to me. Change can be scary for me and leave me feeling very unsettled. I once came back to my desk to find that someone had helped themselves to the power cord from my laptop and my phone charger. It took me less than 5 minutes to locate my missing property, but it took more than 2 hours for me to settle.
I experience the world at a heightened level of intensity. My world is dialled up to 11.
This can be a really good thing- I’m a very creative thinker, I have a very high threshold for physical pain, bright colours and clashing prints have a calming effect on me and I experience art and music quite deeply. On the flip side, loud and unexpected sounds leave me rattled me for several hours and a knock at the door can ruin my entire day.
Over the years, I’ve been bullied. A lot. Teachers, colleagues, extended family members, university peers, other kids at school and even their parents have felt the need to harass and bully me. PwC was actually the first place where it didn’t happen.
Throughout my life I’ve been called weird, a monster, harsh, a bad person.
Growing up, I didn’t have a lot of support. When you hear these things from day zero, you start to believe them. For a very long time, I genuinely believed I was a monster.
I spent a large part of my twenties in therapy trying to learn how to turn my life around, fit in and be just like everyone else. But it felt so unnatural.
Around the time that I was starting to accept my unicorn shaped peg-ness and start the hunt for the elusive ‘why’ factor, a friend of mine was diagnosed with ADHD at the age of 32. Her story inspired me to research neurological differences which led me to the Autism Spectrum.
At first I thought, no that’s not me and I put my research aside. It took me another year to accept even the possibility of being autistic 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. It was a massive relief to finally learn once and for all that I’m not a monster. I’ve just got a different brain.
When I received my diagnosis, I was working from a client site with another member of my team at PwC. At first I didn’t really know how to communicate my news to my team because we’re all based in different cities and different client sites. I ended up just putting it in a quick email.
As soon as I did that my colleague who was sitting two desks behind me, turned to me and said “Hey Ashlea, do you want to go get a coffee?”
It was great! That conversation had a significant impact on me because it ended up being the first of many open, honest and really positive conversations I had with people across the Firm about my differences. Everyone was interested in hearing my story and also learning about how they could adapt to get the best out of me.
This was something I had never seen before.
One of my favourite things about working at PwC is our inclusive culture. Our people genuinely live our values. I’m not just saying that- it’s actually true.
I think it’s because our values are not buzzwords that someone just made up to tick a box. They’ve been developed through wide consultation with PwC staff. They truly represent who we are as a Firm because our values simply capture what we’re already living and doing.
Up until early July last year, I was coping very well with my diagnosis. I was feeling really positive… until I wasn’t.
Because of how our brains work and the rather intense way in which we experience the world, Autistic people experience these ugly things called meltdowns. We become overwhelmed to the point of not being able to function. The world just becomes too much. When it happens to me- I can’t think, my chest gets tight, I can’t breathe and all I can do is cry and ramble incoherently. Once it starts, I can’t stop it. It doesn’t last long but when it’s done, I feel mentally wasted.
I had my first post diagnosis meltdown at work in early July. It wasn’t anybody’s fault- it just happened. I just got overwhelmed.
When that happened, I received immediate support from my managers, my coach (kind of like an in-office mentor) and our HR people. There were a lot of really honest, open and genuinely caring conversations that week- all aimed at finding the best possible way forward for me.
Together, we sat down and we made a plan. Our ultimate goal was (and still is) to not just deal with the meltdowns when they happen but to prevent them from happening in the first place. My workplace recognises that meltdowns are a fact of autistic life but they’re really unpleasant for everyone involved- especially me.
This plan isn’t about trying to change me or turn me into a ‘normal’ person — it’s about improving my overall quality of life. I think it’s pretty incredible that my workplace has decided to take such an active role in that!
Communication, transparency and trust are what make this support plan work.
The support plan has evolved over time and will continue to- none of us have dealt with this kind of thing before and we knew from the outset that it was going to be an iterative process.
At this point in time my support plan includes:
A manager’s referral program with our third party employee assistance provider, Assure programs. I see a psychologist from Assure who then works with my managers and HR people at PwC to ensure that the support plan is working for me. She also provides recommendations for improvements where needed. 95% of what’s discussed between me and the psychologist remains confidential- PwC only wants to know how they can best support me. They could have asked for more details but they want me to be able to be honest in these sessions and gain additional support so they only asked for what they need. This. Is. Awesome.
And last but not least because this has made a huge impact on my working day: I have my own desk. PwC has an Activity Based Work (ABW) environment where workstations are not assigned. Our offices have been designed so that our people can come in and work in the way that they need to based on what they’re doing that day. Before my diagnosis, I really struggled with the concept of choosing a new desk to sit at every day. I’d try to return to the same one each day but it wasn’t always possible and it used to take me up to an hour to get settled and start my day which meant staying longer. Now I get to go back to the same desk every day and it takes me less than 5 minutes to get settled. I still have to pack my stuff up everyday just like everyone else but being able to return to same spot each day has made a huge difference!
That’s my story and before we move into some time for questions, I’d like to share some ideas and thoughts around supporting diversity in general. I am talking from my experience as a person with a disability but I think you’ll find this stuff is pretty universal and can be applied to other forms of diversity.
Employee led diversity networks do more than just throw morning teas- they empower people.
After my diagnosis I did some research on our PwC intranet looking for support options and I found Ability@PwC. I also found out they were looking for a person to lead the network for Canberra. I stepped into it without hesitation because for me it was a chance for me to positively contribute to my workplace and help others. I’ve been running it in Canberra for almost a year now and as of Wednesday (two days ago) I am also one of two National Leads running the network as a whole.
We’ve now got a team of 10 amazing people in the Canberra team and even more in every single one of our offices. Our volunteers have all joined for different reasons and they are making a real difference in the Firm and beyond. With full support from our senior leaders, we’re inspiring our people to take action. I am very excited to see what we can achieve next.
Diversity needs are a very individual thing
A lot of people ask me how they can best support others. It’s different for everyone- there’s no one size fits all support plan. The best thing you can do is just ask that person what they need from you. Don’t shy away from conversations like this- offering support is not offensive. It’s how you approach it that makes a difference. All you have to do is be open, leave your assumptions at home and be willing to listen. Be prepared for the possibility that they might not need anything from you but at least ask the question. Also be open to revisiting the conversation in the future because like you saw in my story- support needs can change with time!
It’s important to focus on strengths and not place limitations on people
I have two major skills: the ability build other skills and a sharp analytical mind that pieces together seemingly random scraps of information to quickly form accurate conclusions. I also have an IQ of 143 which is awesome but as you’ve learned today I: need detailed instructions, take things literally, work best with routine, occasionally melt down and cause offence through my directness. This can lead to me being perceived as someone who: cannot work independently, cannot handle change, lacks the dreaded R word (resilience) and has poor interpersonal skills. None of that is true but I can see how it might look that way. The solution? Be flexible and embrace the unicorn shaped pegs! People are messy and don’t fit perfectly within frameworks or models. Focus on what someone can do rather than what you think they can’t. You will find that a person’s strengths will often far outweigh any perceived limitations. If in doubt- just ask.
Inclusion means everyone.
It is everyone’s responsibility to support diversity in the workplace. We are all accountable. You don’t need to run a diversity network or be a person with a disability to make a difference. We all have different needs- the one thing we have in common is that we’re all different.
Many people have told me that I’m brave for speaking so openly about my experiences 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 each and every one of you here today to help me make that happen.
When you go back to work, find that something that you can do to support diversity in your workplace.
Remember, all you have to do is ask, listen and be open. Just be a human being.