The Autistic Employee: How HR professionals can empower employees with a disability

This is the transcript of the talk I gave at the AHRI Canberra Diversity Network Forum on 4 September 2017.

My name is Ashlea McKay. I am a user experience designer in the consulting space at PwC here in Canberra. I also lead an internal volunteer based disability network called Ability@PwC for both Canberra and at the National level.

I’m also autistic. I was born with Asperger’s Syndrome and I didn’t find out until I was nearly 30.

Steph has kindly invited me here today to share my story with you and also share some practical advice on how you might be able to support people with disabilities to succeed in your workplace.

I’ve always know there was something different about me.

Throughout school, university and most of my career, I’ve really struggled to interact and connect with other people — statues have always been easier.

At school I found it really hard to make friends and when I did, it never lasted very long. I spent most of my lunch breaks alone walking laps of the oval and living inside my own head.

When I was 9, my school gave me a social worker to spend those lunch breaks with. She would try to teach me how to make friends on the playground but no matter how many stick figure based scenarios we drew on the whiteboard, I couldn’t figure out how to apply it on the swingset.

Growing up,I was an avid reader and school holidays and weekends were spent immersed inside the worlds between the pages.

High school was harder than it needed to be and university was essentially just a re-run of high school.

When I started working, I thought things would be different. But I struggled to wrap my mind around office politics and found it difficult to connect with my colleagues. It wasn’t long before I had developed a reputation for being difficult to work with. I was devastated. I couldn’t figure out how it had happened or what to do about it.

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

For a really long time I believed that was true. I believed I was a monster.

I spent a large part of my twenties in therapy trying to learn how to fit in and be just like everyone else. There’s a mental health treatment plan in my file at my doctor’s office showing that my number one goal in 2014 was to learn how to be normal- whatever that means.

My GP is a brilliant woman who supported me 100% knowing that I myself would need to come to the conclusion that it was OK to be different and come to it I did.

One day, after spending more than 17 years battling depression, I decided enough was enough. Slowly, I started to accept myself for my differences and once that happened, I needed to know why they were there.

Getting assessed and eventually diagnosed was the best thing that ever happened to me.

It definitely turned my world upside down but it resulted in a huge mindset shift that allowed me to fully embrace the value of my different way of thinking and help others.

Not long after my diagnosis, I started running Ability@PwC for Canberra. The network is a volunteer based employee led group championing and raising awareness for ability of all types. In the space of 7 months, I grew my team from just me to a team of 12 individuals all passionate about making a difference. 6 months ago I became the National Lead for the network.

Being autistic makes me what is known as neurodiverse. It just means I have a different brain. There are a number of different types of brains out there covering a broad spectrum of neurological differences including: obviously Autism, ADHD, dyslexia and many more.

When I first got diagnosed, I’d only been in my job at PwC for 3 months. I was still on probation. I wasn’t sure what would happen but I personally felt that I needed to disclose my disability to my employer. Nobody forced me to. It’s just what I felt was best for me. Not all people with disabilities feel that way and that’s OK too.

When I opened up and told my team, people were very supportive and understanding. Right across the Firm, people I had never met wanted to hear my story and learn more about what it means to have a different brain. These conversations were really positive and authentic.

Up until early July last year, I was coping very well with my diagnosis. I was feeling really good about it… 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 last year. It wasn’t anybody’s fault- it just happened. I just got overwhelmed.

When that happened, I received immediate support from my managers and our amazing HR people. For the first time in a very long time, I was surrounded by people who genuinely cared about finding the best possible way forward for me. It’s a strange concept for me. Up until that point, I would lose friends, go through managers faster than anyone should and be abandoned by extended family the second I became too difficult to deal with. This was new to me, but amazing.

Together, we sat down and we made a plan. Our ultimate goal was (and still is — more on that later) to not just deal with the meltdowns when they happen but to prevent them from happening in the first place.

This plan isn’t about trying to change me or turn me into a ‘normal’ person — it’s about empowering me to be my authentic self at work.

This experience has taught me a lot and I’d like to share that with you.

A lot of what I’m going to share is based on my experiences as an autistic person. I can only speak from my perspective but I hope that you can take at least some of my advice and apply it in your work.

There’s 3 parts to this section. I’m going to talk you through my current support plan and then I’d like to share some thoughts with you.

Part 1: My support plan

My support plan is and always has been a living thing. This means anytime something could be improved or just isn’t working, all I have to do is start a conversation with my HR manager. Anytime at all. This approach is fluid and flexible and recognises that needs change over time. The best way to head off any potential issues before the proverbial muck hits the industrial sized fan, is to create an environment where an employee with a disability feels safe to speak up.

At this point in time, my plan includes:

• Part time hours in the form of a 4 day working week
• 2 x 30 minute catch ups with my HR manager each week where we discuss what’s been happening since the last catch up and any also any issues that might have come up. I don’t have to wait for a catch up to bring any issues to my HR manager but we have two standing appointments each week to ensure we’re communicating regularly.
• Fortnightly catch ups with our in house Occupational Therapist — just as a confidential check in discussion to see how things are going.
• I have a fixed workstation in our Activity Based Work environment. Activity based work environments mean that our people don’t have their own desks- they sit where they need to based on the type of work they’re doing. This doesn’t work so well for my neurodiversity. Before I had a fixed workstation it would take me up to an hour each day to settle in which was seriously hampering my productivity. Now it takes me less than 5 minutes to get settled and start my day.
• Clear and detailed written instructions around tasks with the opportunity to ask questions
• Assistance in determining the priority order for tasks

So that’s me. Now I’d like to share some thoughts with you. Starting with a discussion on relationships.

Part 2: Relationships

I cannot stress enough that relationships built on trust and respect lie at the heart of workplace empowerment for people with disabilities.

The relationship the employee has with their manager, the relationship the employee has with their colleagues, and the relationship they have with you can make or break their experience as an an employee and in turn can have significant impact on their ability to grow as professionals.

As HR professionals, you’re in a unique position because even though you have a relationship with the employee, you also play a key role in the other two relationships. And that can make all the difference.

I’d like to take a look now at those relationships and share my thoughts on what does and doesn’t work and how you can help.

Relationship between the employee and HR

What works?

• Be someone they can trust. That means following through, respecting confidentiality, being open, honest and transparent.
• Listen to them. I mean really listen. Be that person that they know they can contact anywhere, anytime. They’re not going to call you at 4 o’clock in the morning…
• Regular and open communication with the employee- even if it’s just a ten minute phone call each week! This will help you anticipate and manage potential issues before they become a problem.
• Be aware of and actively manage any unconscious bias you hold- we all have unconscious beliefs, attitudes and bias towards others. It’s part of being human, but if we all recognise our own and actively challenge them within ourselves we become more inclusive.

What doesn’t?

• Assumptions about needs or difficulties- lose them. Individual needs are just that- individual.
• Taking sides when issues arise between the employee and their managers and or colleagues. Try to be that neutral party focused on solving the problem in a way that supports everyone. Taking sides can erode that valuable trust.
• Trust that doesn’t run both ways. People with disabilities often have a hard time getting people to believe them or take their need for reasonable adjustments seriously. Don’t be that person. Believe us when we tell you about our needs and experiences.
• Messy HR staffing changes. People do change roles occasionally- you’re not prisoners- but not doing proper hand off to your successor can make things really hard for an employee with a disability. It can be quite stressful having to explain yourself all over again all the while hoping that this new HR person will believe you and take you seriously. That trust has to built all over again and just by sitting down with the new person and the employee with the disability, you can help ensure this new relationship starts out right. I do understand that isn’t always possible.
• Talking to other staff about the needs of the employee with the disability without them actually being there. Don’t do it. It’s dehumanising and no where near OK. One of the biggest problems faced by people with disabilities is people thinking it’s ok to speak on their behalf. People with disabilities should always have a direct voice in these conversations.

Relationship between employee and their manager (and how you can help)

What works?

• Facilitating open and transparent communication. It might mean sitting in on meetings between them such as performance cycle related conversations. Just being there shows that you care about the ongoing experience had by your employee with a disability.
• Supporting the manager through ongoing education about needs and reasonable adjustments — they don’t know what they don’t know.

What doesn’t?

• Not having a presence in this relationship. I’m not saying you need to be on them 24/7 but in the case of an employee with a disability, you do need to maintain a visible presence in this relationship. Don’t leave them to their own devices.

Relationship between employee and colleagues (and how you can help)

What works?

• Education and awareness building is essential. These are the people that your employee with a disability will spend most of their time with and they need to know what to expect and how to deal with potential issues.

What doesn’t?

• Thinking that their behaviour and actions won’t have an impact on the employee — whether that be positive or negative.

These relationships grow and change over the course of the employee experience life cycle. From recruitment, to day to day on the job, to measuring performance, there’s a lot you can do at each stage to help empower employees with disabilities.

Part 3: Employee Experience Lifecycle

Recruitment

Different needs and different brains need different recruitment approaches. There is no one size fits all approach but there is of course a need for consistency, so how do we ensure recruitment processes are equitable and inclusive?

Recruitment processes are very much a two way process.It’s an opportunity for both sides to see if the other is a good fit for their needs, wants and goals. Like any other first impression, the easiest way for the wheels to fall off is via a misunderstanding or a miscommunication.

When designing inclusive recruitment processes, that gap is what you need to resolve.

Education and awareness building are the essential first steps to filling it. Every person involved in recruitment processes should have a basic understanding of:

-inclusive language practices

-individual needs and how they are unique to the person

-asking difficult questions respectfully

-unconscious bias and awareness of their own (we all have it!)

That education and awareness will enable recruitment staff to be as open as possible to differences. It will help them spot the difference between a potential dodgy employee showstopper and a genuine disability related difference.

There are of course going to be cases where people simply don’t disclose their disability at this stage of the process and my only suggestion there is to just be as open minded as possible and keep any suspicions to yourself. Just be open and accepting of them just the way they are and they might just open up to you. I can spot neurodiversity within seconds of meeting someone and so far I haven’t been wrong but I never outright ask someone hey have you got a different brain? I just listen to them and they always open up to me in their time.

Another essential component to designing inclusive recruitment practices is to bring existing employees with disabilities into your design process.

Do some research and have confidential one-on-one discussions about their experiences when they were hired and be open to their feedback and ideas for improvement. Use those insights to co-design better processes and also include existing staff with disabilities in future recruitment activities. Invite them to actively participate in interview processes etc. This will aid in the ongoing education for recruitment staff and managers, help candidates feel more comfortable and positively contribute to your organisation’s inclusion culture.

In the job

Once a person with a disability is in the job, they might need some reasonable adjustments made to their working environment. This need will depend entirely on the individual. As mentioned earlier, managers and colleagues of the employee don’t always know or understand what is needed and the education responsibilities can often land entirely at the feet of the employee. While the employee should always be included in discussions about their needs, it shouldn’t be up to them to handle everything themselves. Here’s how you can help:

• Be proactive: Talk about to the employee about what they need as early as possible and if you can- ensure adjustments are in place before the employee starts work!
• Think long term: What does this person’s role involve? What might the future look like?
• Implement living support plans like mine to help you support that changing future.

Performance measures

There are two areas of performance that I’d like to discuss: measuring performance and managing under-performance of people with disabilities.

When measuring performance, there’s almost always a framework that all employees are assessed against. It can be hard for people with disabilities to tick every single box and that can limit their potential for career progression. We’re just like anyone else- some of us want to move up and some of us are happy where we are. Disability should never be a barrier to career progression — after all EVERYONE is different in their own way and that’s a good thing!

When considering how to adjust performance processes for people with disabilities, it’s important to take a balanced case by case view. A person might be just ok in one area and off the charts in another. For example, social interaction is always going to rank quite low for me but my technical skills are advanced. It’s about balance and also deciding what the deal breakers are. What are you willing to live with and what is your employee able to improve upon? It’s about meeting each other halfway.

When managing under-performance, you need to ensure steps are taken to determine whether it is an actual performance issue and not an unaddressed reasonable adjustment need. If you’ve built a trusted relationship and facilitated open and transparent communication between the employee and their manager, all you have to do is sit down and have a discussion with the employee. Share your thoughts about their potential under-performance and allow them to have a say too. Ask them if there is anything you can do to support them further. You might find out that a need has accidentally gone unsupported or you might find a genuine need for performance to be improved and this is a really productive and respectful way to start that conversation.

When you put it all together, here are the main components to helping people with disabilities succeed at work. Relationships built on trust and tailored support at key employee experience lifecycle points.

• No two individuals with disabilities are exactly the same
• Living support plans work
• Relationships built on trust and respect matter
• Education and awareness building for all
• Unconscious bias is a fact of life but that doesn’t mean you let it run wild.

For me, everything I’ve discussed today really comes down to one thing. Workplace inclusion culture. In order to truly enable people with disabilities to succeed at work, inclusion has to be ingrained in the deepest levels of a workplace culture. No organisation is perfect. Some are doing it better than others and some are just starting out.

No matter where your organisation is at in its inclusion journey, the ownership of positive change lies with each and every person. You don’t have to run a disability network to make a difference. We all have a role to play and we can all be inclusion leaders at work. I hope what I’ve given you here today will help you along your way.

Thank you.