Sit down with me for 15 minutes or so and let’s talk.
There are a few things I’d like to share with you.
This conversation isn’t an attack on you or your profession. I deeply respect you and the vital role you play. I just want to share my experiences in the hope that you might understand me and people like me a little better so you can more effectively connect with a talented workforce that is grossly underemployed and underrepresented.
This is a case of ‘help me help you help me and people like me’.
My name is Ashlea McKay. I’m a Canberra based User Experience (UX) designer, researcher and writer with more than 8 years of experience and a background in industrial design. I’m a keynote speaker with international conference experience, a successful writer, the Chief Columnist and Co-Founder of the UX Agony Aunt advice column that can be found on the Optimal Workshop blog and I have a book coming out this year.
I’m also autistic. I found out almost 2 years ago to the date at the ripe old age of 29, which is simultaneously frustrating and amusing because I was born this way. I am neurodiverse — that means I have a differently wired brain. I think differently and I need different things. There’s nothing wrong with me but I’m also not what you would call ‘normal’. I have a lot to offer the workplace and I do require some support.
I spent nearly 30 years fighting against myself, suppressing my true nature and trying to fit in and it was an exhausting living nightmare that facilitated an 18 year battle with depression and 3 suicide attempts. It didn’t matter what I did, I couldn’t connect with people and I couldn’t be what they wanted me to be — unicorn shaped peg met square hole and it was a big mess.
After I was finally diagnosed, I went through an absolute rollercoaster of a time. Elated highs at the freedom that knowledge brings and stomach churning lows as the internal identity war hit rock bottom. My confidence and self-worth were savaged by both my demons and the discovery that the world can be a cruel and ableist place for someone with an invisible disability.
That’s what autism is. I look like everyone else and you can’t see the different ways my brain is processing information or what is really going on behind my facial expressions which very rarely match what I’m thinking. You can tell when I’m really happy but that’s about it. Based on photos and feedback, I can tell you that when I’m proud of an achievement I look confused. When I’m actually confused I look angry and if you say something controversial, I’ll just laugh at you and won’t be able to articulate why I think that’s so funny and I might leave you thinking I’m immature and significantly lacking in a future to be taken seriously.
Even though you can’t see it, autism is a lifelong and permanent condition — it’s very real and deserves as much respect as any other disability. People have said things to me that they wouldn’t dream of saying to someone with a visibly obvious disability and they always seem to be able to justify their actions when called out on it. It’s like because they can’t see it, it’s not really there or because it’s neurological, it can be trained out of me like a puppy that won’t stop barking.
They’ll throw neuroplasticity studies in my face and claim that I should be able to ‘work on’ being less of an inconvenience to them but don’t seem to understand not only how ableist and offensive that is but also that I’m already using that thinking to develop coping strategies — many of which cause even more irritation.
I use stim toys and diaphragmatic breathing techniques to calm myself and I retreat to rooms with natural light when the fluorescent lighting becomes too much. I wear noise cancelling headphones and when I’m feeling overwhelmed. These techniques can cause me to be viewed as fidgety, absent or rude which can make things a lot worse. I’m open and transparent and actively seek support but I’ve found that just needing that support is often considered unacceptable. I’ve learned that it’s not really OK to need help from time to time. Disability reasonable adjustment needs can easily be mistaken for performance or suitability issues when going through job application processes.
The world can be a difficult place for people like me and I work damn hard to meet other people halfway but I can assure you that no amount of brain training is going to change the way I feel when I hear a loud and unexpected sound or enable me to respond to every single interaction in a socially acceptable way. I experience the world at a heightened level of intensity and no matter how annoyed you feel by my thought patterns or silence, you have no idea how hard it is for me to just exist. And yet I power on through every day.
Given enough time — and when I’m surrounded by trustworthy, supportive and forgiving people — I can learn the behavioural patterns exhibited by specific individuals and develop rules and principles for how I interact with them. It might seem cold and robotic but I’m good with rules and the heart and humanity exists in my motivation and the unconditional care I feel for others. It breaks my heart when I learn that I’ve upset someone — even if you can’t see it.
It took me around 18 months after my diagnosis to make peace with my differently wired brain and learn to embrace the natural strengths and talents that I bring but I got there. I dived into advocacy volunteer work, have given talks and have written several well received articles. I’m happy and I’m in a good place mentally — I have my moments and I’m still battling depression but I know who I am now which is something I’ve never had.
Unfortunately, despite my advocacy work and that of others, my autism has proved to be an obstacle when job hunting.
I left a permanent consulting based role in October 2017 but my job hunt started almost a year before then. The role itself just wasn’t the right fit for me. The organisation I worked for was great, I loved my clients and they loved me back, I had an amazing in-house mentor person whom I’m still in contact with and I successfully ran two Diversity & Inclusion networks but the consulting lifestyle just didn’t sit well with my disability needs. I worked with nice people but the nature of consulting in general conflicted with my autistic brain and wreaked havoc on my mental health. It was nobody’s fault — it was just something I couldn’t do anymore.
I started loosely exploring other options in November 2016 and with the support of a very understanding HR professional, I upped my job hunting efforts in May 2017.
To this date, I haven’t found a suitable permanent role and I ended up going into business for myself last October. While it’s something I’ve always wanted and I certainly felt ready to take on the challenge of self-employment, if I’m being really honest, my job hunting struggles definitely pushed me to make the leap a lot sooner than planned.
Don’t get me wrong, I love working for myself and it’s the only way to be absolutely certain of a completely disability friendly workplace, but it has come at a high price. Living from contract to contract and never being 100% sure of when or where the next one is coming from, keeps me awake at night in the worst possible way. I’m earning less than I did 8 years ago as a graduate and I don’t get super or paid time off of any description. My operating costs aren’t pretty and I have to wait until tax time before I will see even a fraction of it again.
I live under a doomsday clock of sorts. I can go X number of months without a contract before I need to start looking for a new professional skills based role and then I can look for those roles for Z number of months before I need to look at taking any paying job just to stay afloat. I’ve had to start exploring retail and service industry based jobs as a backup for if/when things go south which opens up a whole other can of worms because interacting with the general public all day every day is a very difficult thing for someone like me to experience. I’ve been there.
Now to be clear, some amazing people have floated multiple job opportunities and role descriptions past me but unfortunately very few of them were actually jobs I could do — I simply didn’t meet the skills and experience criteria or they didn’t meet my criteria around location, employment type, duration and role type. I’m not picky — I logically and objectively assess my skills, experience, career goals and financial needs against the selection criteria and job advertisement — I imagine most people do this!
I’m quick at absorbing written information too so it might seem like I’m being dismissive when I hit the ‘not interested’ button in LinkedIn less than 5 minutes after getting the message but that’s just not the case.
The countless roles that I have pursued however, have delivered experiences that have led me to believe that being on the spectrum is holding me back and making it very hard for me to obtain permanent structured employment that matches my skill and experience level.
I’ve noticed a pattern in job applications — in many cases, everything is going fine until I drop the ‘A’ word and then it’s radio silence all round. The second I disclose that deep-seeded part of my identity, I start hearing crickets. Without having even met me, emails go answered, calls that were promised never come and yet the desperate pleas for applicants on social media persist!
And when I do make it past that hurdle, things get really interesting.
I’ve been offered less money for advertised roles despite having more qualifications and more experience than what was asked for and then I get bullied for not only turning it down but for also daring to ask why it was lowered. I understand that sometimes there is a legitimate reason for why businesses do this but to react badly and not even answer the question is really concerning.
I was recently offered a permanent role only to have it revoked 3 days later in the place of a contract after they obtained my contract rate by telling my recruiter that they might need to make me a contractor temporarily in case there was a delay in getting the paperwork in order. Then they told me they were offering a contract because they didn’t know how my reduced (and disability supporting hours) would suit them- despite a lengthy discussion at interview about it! After being called out on it and asked to explain their thinking, they finally claimed I was being offered a contract role because they couldn’t guarantee work beyond a specific timeframe. I found this baffling because UX is an ongoing need but it’s not entirely unheard for a number of reasons.
By this point though, I couldn’t trust them anymore and I turned it down. It wasn’t fair and it was simply too far removed from what I applied for. I’m flexible, but revoking an offer in favour of lesser conditions and then behaving like untrustworthy jerks equals a whole lot of no from me. The worst part? Two days later the role was advertised again as PERMANENT. Either they were less than truthful on the new job advertisement in the hopes of baiting some unsuspecting person or it just wasn’t permanent for me.
I’ve been fed all manners of politically correct bullshit and mocked for asking questions designed to help me ascertain how disability friendly a workplace is. I’ve also observed prospective employers repeatedly change the subject when my autism comes up in conversation or when I ask them if they have any questions about it.
I’ve met with contacts for what I was told would be an informal coffee chat only to find that coffee can be neurotypical code for structured job interview and that I prepared and dressed for the wrong meeting type and then struggle to articulate myself.
I’ve been offered 2 week trials at interviews only to have my emails and calls go unanswered when I enquire about when it will start. Being offered 2 weeks to prove my worth is more than a little insulting — isn’t that what the 3–12 month probationary period is for?- but I was willing to give it my best shot.
Disability employment organisations and websites haven’t been much help. Some do it better than others but overall my experience has been quite disappointing with many offering no more value than one of the more traditional job platforms like SEEK or even LinkedIn. Employers advertise these roles on multiple websites and I’m yet to see any evidence on how applying through one of these disability employment websites is any different to applying for that same job through other platforms or the employer’s own website for example. How many of these employers are actually hiring candidates that applied through a disability employment website as opposed to the other advertised channels? I understand that these organisation can be really helpful in onboarding successful candidates into new roles, but how do we even get past the front door?
I’m fed up and frankly, I feel sick every time a job advertisement lands in my inbox. It’s like here we go again — how far am I going to get this time? It’s hard not to feel disillusioned and highly skeptical of the equity of the system.
I’ve tried calling out this behaviour through other articles and talks only to be ignored and called ‘offensive’, ‘rude’ or a ‘sore loser’- hey I’m happy to be turned down for a role but the reasons had better have nothing to do with disability discrimination or prejudice. Talking about disability discrimination isn’t a personal attack — it’s my life — and thanks to stereotypes and a lack of education and awareness, sometimes people unknowingly make ridiculous assumptions about autistic people.
Should I keep my mouth shut and not disclose my autism? I’ve been told that I should but I think that’s wrong. For me that would be hiding who I am. Rejecting and turning my back on myself as the ultimate act of self-hate. I’m proud to be who I am and I wouldn’t change my autistic brain for the world. Nevermind the fact that a quick Google search would show me leaping out of the autism closet in a flurry of rainbows and glitter in mid 2016.
When you reach out to me with a potential job opportunity, I can’t help but wonder if you’re aware of my autism and if you are, if you’ve considered what that will mean for the selection process ahead. Am I a tokenistic piece of diversity with no real chance of making it to the final round? Are you expecting me to ‘turn normal’ and not ‘rock the boat’ if hired? Are you lowering the salary because you think you can get away with paying me less? Do you genuinely believe my skills and experience are worth less to your organisation because I’m autistic? For those of you who drop off the face of the earth when you find out, why is that? Do you think accommodating my disability support needs will be too expensive or too hard? Are you afraid you won’t know what to do with me? Do think I’ll be a burden on the team? Do you doubt my intellect or my capability? Or is it something else entirely?
If you find these questions — or anything I’ve shared in this post — upsetting or offensive, stop and think for a moment.
Consider the experiences that I’ve had and the life that has been lived to cause these genuine curiosities to emerge. Yes, I’m frustrated and annoyed at the ridiculousness of the obstacles I’ve faced to gain employment but I don’t want you to get angry or feel sorry for me — I want you to think.
Think about what you can do on your end to help people like me break down these barriers to meaningful professional level employment that allows us to use the skills we’ve worked so hard to acquire and challenges us to build more. You need to do better than #goodenoughforthem. My life, my skills and my experience are worth as much as anyone else’s and underemployment is NOT good enough. I’ve worked damn hard to achieve what I have and I am valuable.
I’m not a useless, inconvenient troublemaker who will drain your resources and waste your time. I’m not less capable. I’m not someone to be exploited. I’m not lying about the severity of my symptoms or failing to make an effort and I’m not willfully trying to make you miserable.
Rather than trying to supress my traits, change me, or hire me under conditions you wouldn’t offer to my non-disabled counterparts, be open to meeting me halfway. It’s about building a working relationship based on equality. When I’m supported by little more than kindness, common decency, respect and the benefit of the doubt, I get to just be myself. My anxiety and Executive Functioning difficulties lessen considerably allowing me to tap into the advantages of a brain like mine and deliver incredible things.
Here’s what you can do to help
1. Please stop sending me emails that amount to not much more than ‘I’ve got a role to fill- what’s your phone number’. That tells me that you have absolutely no idea about what I need or what I’m looking for and that I’m nothing more than a solution to your problem. It tells me that I’m not actually a person to you and just some resource for you to move around like a piece on board game.
Instead: Build a meaningful working relationship with me. Ask me what I’m looking for and what I need and then when roles come up, you already know about me. Take the time to read that carefully constructed summary paragraph that clearly states what I’m looking for and how best to communicate with me. As an autistic person, talking on the phone to people I’ve never met about really important details like those for a potential job application is a really difficult task. Written communication is better in the first instance and then we can progress to verbal communication over the phone or in person. ’m also not just looking for some random job that pays X amount. Cultural fit and inclusion environment are what matters most to me. I need to know that the culture is right for someone like me and the very least I need an inkling of whether or not it is before I commit time to applying for the role. Job applications are a two-way process and it starts with you. Work with me — the splatter gun approach doesn’t work for me. I understand that you’ve got a job to do and that includes contacting a lot of people in a very short space of time and that every second counts but if you slow down and take a few extra minutes to communicate with me more effectively and we might have a chance at a really successful partnership.
2. Please stop being so defensive when I ask the questions I need to about your workplace inclusion culture. I’m not attacking you and I’m not implying anything nefarious about your workplace. When I ask these questions my meaning is literal.
Instead: Be an open and active participant in a constructive conversation. If I ask you if there are any other disabled people in the workplace, just answer my question- don’t make snarky comments about how disabled are everywhere. We’re not. We are not represented as well as we should be and dismissive nonsense like this only serves to marginalise us even more. It’s not a trick question — it’s either a ‘yes’ or a ‘no’ and that will help me frame my next question. And please don’t ignore me or change the subject- it’s not helpful.
3. Learn how to take ‘no’ for an answer. If something changes during the application process with regard to role type or remuneration and if I decline your offer, do not harass me with incessant phone calls or bully me because you didn’t get what you wanted.
Instead: Be honest, listen to me and accept my answer the first time I give it. Don’t think that my mind is soft and malleable enough that I can be talked into anything- there’s negotiating and then there’s this and THIS is all whole other story. If I applied for a permanent role and the role is genuinely no longer permanent, I’m going to decline it simply on the grounds that I would never have applied for it in the first place if it were advertised as a contract role. It’s just not what I applied for. If I want a contract role, I can get one myself since I run my own business but if I apply for a permanent role, it’s because I want a permanent role. After workplace culture, stability is next on my priority list.
4. Please stop offering autistic people lower remuneration and working conditions because you think you can get away with it. Yes, it happens. It’s happened to me, it’s happened to people I know and recruiters have shared horror stories of their own with me where their clients have actually asked the question of “Does this mean I get to pay them less?”. It’s disgusting.
Instead: Just don’t do it. And if you think it’s OK to treat people like this, lose my number. You’re not offering an experience I or any decent human being is looking to be a part of.
5. Become a positive advocate for autistic people in the workplace and during the hiring process. Have an open mind, read articles written by autistic adults about their experiences, talk to us and think about how you might be able to help make things better for everyone. Every little bit counts and if you don’t know what to do, just ask.
Before I leave you, I’d like to acknowledge the unwavering support I’ve received from 6 very special people during this 17 month long bout of job hunting hell — 4 friends, the aforementioned HR professional and one amazing recruiter. They know who they are and they’ve taught me that it’s not all bad out there and have inspired me to write this in the hopes that I can prevent further crappy experiences for both myself and other autistic adults.
I hope this has been helpful in building your understanding of some of the experiences had by autistic job seekers, so that we can all do our part to make things better.