The word ‘work’ conjures up memories, both good and bad, no matter who you say it to. We have all had that one workplace where we loved our co-workers, the work wasn’t so bad, and our boss was awesome. Likewise, we all have horror stories to tell where our workplaces were chaotic, the daily grind unfulfilling, and our co-workers as toxic as our boss. In both scenarios, the paycheck only becomes the focus when we say things like, “They don’t pay me enough to put up with…” or, “I love this job so much they don’t need to pay me to do…”. However, the reason we love or hate work has almost nothing to do with what we are getting paid, and almost everything to do with how we feel about our jobs.
It's no different for autistics. We, too, have employment experiences seared into our memories. Some remind us that work is worth it, and others have us wondering if we missed the email that said work is punishment, so deal with it. The difference for us is that the reasons why we like or hate a job are just a bit more complex.
The first time I remember understanding the implications of work came in grade school. As an undiagnosed autistic with sensory sensitivities, school was my least favorite place in the world. I loathed the early wake-up, the uncomfortable hours at a desk, and the snails' pace that time moves at when you are bored out of your mind. The social made it worse, of course. After all, little girls have a special talent for being cruel.
On one particularly anxiety-filled morning, my frustrated, single mother, decided honesty was the best policy, and she explained to me very succinctly how the world of work, well, works.
“Right now, school is your job and one day a job will be your job. No matter what, not all of your time will belong to you. You don’t have to like it; you just have to do it.” And just like that,
what it meant to work became clear, and depressing, at the same time.
Here's the thing about the stuff our parents tell us in moments of utter exasperation, it's usually the unedited truth. Such was the case with this pearly nugget of wisdom from my mom at 6 am on a school day. Sad as it was to hear, that is exactly how my mom felt about work. It's something you have to do to be able to earn the money to enjoy the time that does belong to you, and more disturbingly, you HAVE TO do it AND you don’t have to like it. Insert imploding child brain here.
Unfortunately, this is an all too common way of thinking about work. It is often pitched as “I work hard, so I can play hard”. But there is a problem with that logic and lies in the imbalance between work and play. The truth is we work a whole lot more than we play, spending multiple days a week where our time is not our own, and if we don’t like how we feel about it, it means being miserable almost 80% of your life. Think about that for a second, nearly 80% of your life is spent working and we somehow think that should all be summed up by a simple paycheck.
The truth is a paycheck alone just isn’t enough. There is more to work than that. There is the management to consider, your colleagues, your hours, your workwear, the environment itself, the travel to and from, the meal planning, and so much more. Work is actually a complex maze of performing for others while doing your best to keep your human needs to a minimum. It is absolutely absurd. It’s as though the expectation is that you leave your humanness at the door.
For autistics, there could not be a greater challenge. All those “human” concerns about having our needs met are actually just as, if not more, important for us every single time for autistic people. It is nearly impossible for us to sustain employment otherwise. We simply can not produce effectively in a work situation over an extended period of time without adaptations that include our humanness, and autisticness, first.
The world of work is full of unwritten social rules, a desire for sameness, and networking politics that are nothing but challenges and pitfalls for autistics. In fact, many of us suffer from workplace and employment trauma that usually has nothing to do with the actual work itself. Instead, it comes from having to ignore or mask our autistic human needs while we toil away for 80% of our lives. That may mean changes like flexible hours, fewer works days, working remotely, and scheduling breaks throughout the day.
It's time that what we mean when we say “work” changes, not just for autistics, but for everyone. It should no longer mean leaving your humanness, or autisticness, behind when you walk into work every day. It should no longer mean doing what we have to even if we don’t like it. It should no longer mean putting up with toxic co-workers, uncomfortable environments, and zero fulfillment. We can do so much better than that with that 80%.
Clearly, a shift in how we think about employment is well overdue. Workplace culture could use a major overhaul and the why behind our motivation to work needs to change. We all deserve the freedom and kindness to be our authentic selves and take care of our needs while we are at work. What that means for each of us will be different, but by creating less rigid workplaces, we also create space for employees to produce, without leaving their identities at the door. We need to build our humanness back into the way that we work, and with it, cultivation of difference, and a willingness to adapt. This is the only way we stand to succeed at making employment accessible and inclusive.
BECCA LORY HECTOR was diagnosed on the autism spectrum as an adult and has since become a dynamic autism advocate, consultant, speaker, and author. Becca has published multiple articles and books about life on the autism spectrum with the goal of spreading acceptance, building understanding, and encouraging self-advocacy. The creation of her international, grant-approved, virtual course for autistic adults, “Self Defined Living: A Path to a Quality Autistic Life”, is allowing her to help improve the lives of autistics in the now and on an almost daily basis.