Being Diagnosed with Autism is the Best Thing That's Ever Happened to Me

Have you heard of Spoon Theory? It was created by Christine Miserandino in her essay “The Spoon Theory” in which her friend asks her what it’s like to have lupus. She writes “…that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to.” Miserandino collects the spoons from around the restaurant they’re in, hands them to her friend, and says, “You have lupus.”

Miserandino then asks her to list her morning routine. Wake up. Get out of bed. Shower. Dress. For each activity, Miserandino takes a spoon and writes that she doesn’t explain to her friend that with lupus, even opening your eyes might cost you a spoon, but regardless, before her friend has even left the house for work she is down to six spoons. When she gets home in the evening, she says she’s hungry, but there’s just one spoon left.

Miserandino gasps: Does she spend the spoon cooking and forgo the post-dinner clean-up? Or does she go out and risk being too tired to drive home?

Miserandino says that “[i]t’s hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day.” But she also writes that using the metaphor of the limited number of spoons helped her friends and family to understand her.

Those of us with disabilities and chronic illnesses have adopted Spoon Theory in order to not only explain ourselves to others but, and especially for those of us who have been diagnosed in adulthood or have developed disabilities, we use it to learn about ourselves and find ways to respect our own limitations and boundaries. Because in this capitalist system we are taught that our value is tied to both how much money we earn and that we should be working all of the time. Learning to slow down and listen to our bodies IS the hardest thing we’ve ever had to learn.

I was diagnosed with ASD (Autism Spectrum Disorder) at 32. It was a diagnosis I began researching many years earlier. A diagnosis I had to seek out and press for. I was told I wasn’t weird enough to be Autistic. Still, people (including psychologists) use microaggressions like, that seems normal to me, in initial, non-evaluative meetings. I have even been told straight up that I’m not Autistic because you can always tell when someone’s Autistic, which has been disproved by Dr. Tony Atwood who started researching women and Autism in the 90s. Women tend to mask well and suffer in silence because of the energy it takes to mask.

That particular psychologist, an ASD diagnostician at the time, married to a friend, had only met me for a total of a few hours, a couple of years separating our meetings in a non-diagnostic setting (we were in a park watching their son play). It was a 100% unethical conversation.

Gratefully I had already received my diagnosis by a specialist who HAD kept up with the research, a meeting it took me years to request, a meeting that I sobbed and sobbed at because I felt like an imposter for even being ASD-curious. If I hadn’t already had my diagnosis, my friend’s wife’s unofficial diagnosis would have sent me spiraling back even further into depression and feeling like there was something wrong with me rather than the fact that I was living in a world not made for a person like me.

My surroundings, culture, expectations are always sucking energy from me. Not only do I expend energy as a woman in a sexist society, but I also expend energy navigating this extroverted, loud, capitalist society where all of management seems to think that open-office floor-plans and creative group meetings are the best ways to foster innovative ideas (SPOILER, they’re not, even extroverts need four walls according to Quiet: The Power of Introverts in a World That Can't Stop Talking by Susan Cain), where gas stations in rural Minnesota have ads playing on screens at the pump, where industrial style fluorescent lighting is the default everywhere you go (but why in dressing rooms, do they NOT want me to buy their clothes?!).

I don’t have energy left over to justify my Autistic identity to anyone, whether they be friend, family, or professional relationships. I’m too busy trying to cook myself dinner AND clean up after so that tomorrow isn’t harder.

Since I was diagnosed I have had to learn to tend to my body in ways I didn’t realize I needed to before. In ways, many of us, especially women and otherwise marginalized peoples, aren’t taught to. In ways, the expectations of capitalism teach us we should ignore.

I have had to learn to engage in the radical act of listening to and then heeding my body, because though ASD is a neurological difference, the weight of the energy I use navigating social situations; experiencing sensory overload to sounds, screens, lights; keeping myself on time and relatively as organized as your average neurotypical, lives in my body.

And because I am who I am, that journey started with reading. First reading about Autism itself and then other neurodivergent types (SPOILER: there’s a lot of overlap in traits and experiences for AFAB persons who go underdiagnosed in both ASD and ADHD), then I moved into trauma theory, emotions, vulnerability, and shame. I was looking for ways to heal. Not heal my Autism, but to heal the trauma I’d experienced as a differently-abled person in this society.

The trauma of the public school system on a brain that was intelligent, but couldn’t follow with ease all the imposed rules and expectations. The shame of feeling like a failure for poor attendance records (I started taking mental health days, without knowing I was taking mental health days, as early as first grade). I needed to heal the shame I felt for not ever feeling like I was doing enough, for feeling like taking a day off made me a bad person, for feeling like I would never find success because this culture taught me that I was lazy and that the only road to success is one in which we work many hours and sleep very little.

A world where still some of my family sees me living in my parents’ basement (for not the first time in adulthood), my many advanced degrees that I haven't managed to turn into income, and the fact that I’ve cut out certain foods because it makes my body feel good rather than giving my taste buds a temporary joy, and they tease me, implying that I get back in line, they haven’t been allowed to care for themselves, why should I get to?

This world has taught me that if I am unable to keep my head down, show up on time, do as I am told, and never stop working I am not a valuable member of society. I might hurt more than many under this system, but we all suffer from it.

I have felt like a canary in a coal mine, feeling all the effects of dangerous work conditions and up until recently, screaming into the void as everyone tried to convince me there was something wrong with me not with the environment. And even still, many will say it IS just me.

However, being paid by the hour and working for an employer who takes home most of a company’s income while the hard-working people at the bottom do most of the labor hasn’t always been the norm.

Prior to the Industrial Revolution, working people were paid per project, not per hour (obviously this is not true for slaves who were not paid at all nor were they considered people, which is a whole other issue), which meant that like our contract and freelance workers today, they often worked out of their homes or nearby, had more control over their time, and within reason of competitive prices, were able to charge a livable wage for their services. In fact, according to Tom Hodgkinson, in How to be Idle, he says most workers took three-day weekends, long lunches, and worked only as much as they needed in order to maintain their lifestyle.

But the Industrial Revolution introduced machines that took jobs away from the independent worker and put them into factories. Work culture shifted from being paid per project to being paid per hour. Gone were three-day weekends and long lunches. Gone was the focus on living and the simple enjoyment of being alive. Gone was very necessary idle time.

But management had a hard time convincing workers that this was a better way to live (because it wasn’t) and so they took measures to shift their mindset. Equating work with worth didn’t start with the Industrial Revolution, but it was solidified by it.

Both Hodgkinson and Celeste Headlee (Do Nothing: How to Break Away from Overworking, Overdoing, and Underliving) write about how managers and management advisors (a position taken up by philosophers and thinkers in the suddenly shifting work culture of the 17 and 1800s) used language from the bible (passages particularly enjoyed and enforced by the Puritans) to brainwash employees to feel as if their value was tied to the number of hours they worked each day.

Employees were underpaid, underfed, overworked, and often abused. Management put their workers in a position where they had nowhere to go and no energy to seek out better circumstances. In reality, it’s not that different than many working conditions today.

Offices of today have become the factories of yesterday. Our government decided that being paid well, mandatory pensions, and guaranteed healthcare make us lazy so they’ve fought against increasing the minimum wage, have been dismantling unions, and we battle over healthcare coverage and its costs. (Interestingly, however, they do pay for public education and have done since the Industrial Revolution in the US. A system that was designed to serve capitalism: being on time is more important than thinking for oneself (paraphrased from a Noam Chomsky essay)).

Shifting to the eight-hour workday and worker’s rights implemented in the 20th century seemed like a win compared to the long and dangerous factory hours, but it is literally an arbitrary number of hours not at all backed by any kind of focus, productivity, creativity, or health science. But it has been so normalized that working fewer hours (for whatever reason) is invalidated with less pay and fewer benefits, even though science has proven that people get more work done and are much happier and healthier working six hours a day than they do working eight (Headlee).

But many, most, more than half (?), are underpaid and too burnt out to do much more than scroll phones at the end of the day. In other words, there’s no energy left to organize, reevaluate, to tune into what we need, let alone ask for it or find it elsewhere. We’re made to feel that two weeks of vacation and six weeks of maternity leave is the pinnacle of working life.

Before COVID restricted me to my house I had just come away from nearly a year-long case of burnout while trying to be a successful academic: I’d applied to receive funding to attend three different conferences and two out of state workshops in my field, I received almost all of the awards, and thus attended said events while hand-printing two books for coursework and maintaining a full course-load.

By winter break I was experiencing a level of burnout I hadn’t since I was in my early and mid-twenties. In other words, a level of burnout I experienced when I was undiagnosed, living in poverty, suffering from massive trauma and shame wells, and drinking to self-medicate.

Over the break, I took a big pause and reconsidered what I wanted my academic life to look like. I made firm decisions about where I was and was not willing to spend my energy. I was ready to do things radically differently to maintain my position in academe even if meant letting go of what a successful academic looked like. I returned to spring semester saying YES! to rest and YES! to doing less. In other words, though I knew I hadn’t quite recovered from the bout of burnout, I thought I had my spoons handled. Like Miserandino, I thought I was reserving a spoon in my pocket for the end of the day. I thought I was doing quite well.

But then I was required to stay home because of COVID and I realized that despite the heavy anxiety I experienced about the virus, I was also feeling lighter and more clear-headed than I maybe ever had done. As it turned out, having to leave the house every day expended more energy than I had to give. Would academia work for me?

Would any work that regularly took me out of the house be okay? None had been so far. Everyone told me it was different when you found a grown up job that you liked, but here I was in an academic program learning how to bind books and print books and about book history.

I loved nearly every minute of it more than I have loved doing anything else. In a lot of ways I was the happiest I’d ever been, crafting tangible objects made me feel capable for the first time in my life and I loved watching my words printed on a sheet of paper I chose and cut down and hand-printed on a Vandercook SP-15 and bound myself, but I was also completely and overwhelmingly exhausted almost all of the time.

I had to ask myself if there was another way to have a career.

So I left academia. I moved in with my parents. I do not yet have the means to acquire a letterpress printer, but making is still a part of my overall practice. I am taking control of my time and my energy.

It has become clear to me that many, most, more than half (?) of us struggle, not just women, not just neurodivergents like myself, but the system works in favor of the mental health of almost no one including straight white cis men, even if they do benefit from it in a lot of ways others don’t.

I know not everyone is able to move in with their parents, not everyone can sell their house and move into a campervan, not everyone can work shorter hours and still feed their children.

The big changes have to come from the top down: universal healthcare, shorter working hours while maintaining the same pay (abandoning being paid by the hour?), work from home options for all jobs where that’s possible, universal base pay, some form of housing for all who want it, mandatory pensions.

But I also believe that a bottom-up approach is useful to begin to shift the mindset of the people at large which begins to shift the mindset of policymakers. And I don’t mean adding more self-care baths and yoga classes to one’s already packed to-do list, I mean digging in to giving fewer fucks about the things we can give fewer fucks about.

I mean working collectively to deconstruct the shame wells we have internalized from a broken capitalist system that would have us working literally all day every day if it could to produce products and services we don’t actually need.

I mean reconsidering what kinds of lives we actually want to live, how much stuff we actually need, what living spaces we actually want and making tiny shifts and adjustments to reduce the impact this faulty system has on us, which might help us to raise children who think differently than we do, which might change the system, eventually.

Living in capitalism means living in duress and living in duress means we often haven’t had the opportunity to examine these things.

Millennials are getting a lot of pushback for asking for more, abandoning old practices, and seeking new ways to live (tiny homes, digital nomads, the anti-work movement), but it’s a perfectly logical response to a broken system that’s set against us ever living healthy, fulfilling lives.

And that’s why I’ve created Midge, a community of creative healing and creative energy for people who write. To make changes, however minute, more of us need to fully internalize our worth outside of work. We need to know that we are valid and valuable just by existing on this planet, that our integrity and kindness are the most important parts of us, NOT our bank accounts or job status.

The other day I was having doubts about my ability to earn money and a friend reminded me of all the things she does to soothe the negative feedback loop in her head. She says to me that she knows I know all these things, but those voices imposed themselves onto us from a collective system of voices, maybe they need to be broken with the help of a collective of voices.

This is the kindness I want to bring into 2022. In my own small way, I want to bring all of the research I’ve done, all of the deconstructing I’ve done, and share it with others. I want to build a space where others on their own healing journeys can speak out. I want us to learn from one another and support one another.

I want this community to be that collective of voices that shatters those negative feedback loops of fear and internalized systemic capitalism.

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Libby Walkup writes from the north woods of Minnesota about neurodiversity, autism, academia, and slow living. She is the founder and editor over at Midge Mag, a community of creative healing and creative energy that’s just getting started. Follow her newsletter, Northwoods Recorder, for more.