Holding Space for Every Argument Is Exhausting

Or how I can accidentally become an autism denier (even though diagnosis radically improved my life.)

Photo by Andrea Quiroz on Unsplash

Lately, I’ve been finding it difficult to write about autism without a thousand caveats. A number of my friends have found themselves identifying with autistic traits, to the point where they have articulated that they could likely be classified autistic, but none has wanted to follow these thoughts and feelings up with attaining an actual diagnosis.

In fact, they have actively resisted this next step.

When I found myself at a similar point, i.e. learning more about autism and identifying with the traits, I sprinted into the diagnostic arms of a professional. And soon enough, I had a diagnosis. So why do some of us pursue this label that many others do not want?

Another friend and I were talking about the ‘explosion’ of autistic women seemingly emerging at the moment.

“But everyone can’t be autistic, can they?” one of us said, in this conversation. It could have been me, I can’t remember. But I felt very confused.

Am I really autistic? Or am I just part of a wave of women who have been too easily diagnosed? Will I shy away from this label in the coming years with a familiar feeling of shame at my gullibility?

One friend believes that ‘autism’ has become so broad that it has begun to lose meaning. And when you compare my situation with someone with extremely high support needs, I totally understand how it is difficult to align these diagnoses.

“I don’t have accompanying intellectual disability,” I have said, as a way of explaining this disparity, or at least, making sense of it myself.

Or: “That's why it is called a spectrum.”

At the same time, I feel guilty and selfish for identifying as disabled and hoping for help, when my support needs are so comparatively low to others with the same diagnosis.

---

Since my support needs are so comparatively low, why was it such a relief to me, to realise that I would very likely fit under the growing umbrella of what counts as autism?

One of the elements that propelled me was the fact that I had more time and space to reflect on my life. It was summer 2020, and COVID had struck. A week before the first lockdown I had been signed off work with ‘stress’ after becoming too anxious to make it in.

The weeks and months before that, I had been pushing myself extremely hard. Traveling 188 miles, sometimes twice a week, to my first full-time lecturing post, two counties away from my home. I’d been teaching for years, but this was my first time on a faculty, and my highest teaching workload by about 15 hours a week.

My partner (with Ted, my cat and ultimate self-soothing support animal) stayed in Bristol for work/studies, while I rented near the uni where I worked. Driving home at weekends, whenever humanly possible.

This situation was almost sustainable, and I pushed through three/four semesters, learning a lot, and having many good times, before I was eventually signed off, exhausted. The job was a real step up, in many ways. I finally had a permanent post in academia and a decent salary that would, eventually, allow us to get a mortgage sufficient for a house with a garden, which had long been my dream.

But the role also forefronted some of my starkest challenges.

Driving was an issue. I got lost often, and had to constantly fight the urge to fall asleep. It felt dangerous, as I mainlined Haribos, blasted cold air into the car and slapped myself around the face to keep myself alert-ish (and everyone else alive).

Scheduling was an issue. I could not keep track of what day it was while I was teaching. I was so focused on the material I was sharing, that I struggled to remember whether these students were my second or third-year group and, consequently, which assessments were due, and when.

Students asked basic logistical questions about the course, and I would find myself unable to answer them. Standing in front of a group of undergrads or postgrads is not a comfortable place to discover that you don’t know what day/week/year it is. This kind of ‘silly mistake’ happened a lot, and I worried it undermined their confidence in me as an instructor. It definitely undermined mine!

it made me feel embarrassed and stupid, and I would then find it difficult to shake those feelings off.

Through teaching so often I discovered that just being around so many people so often made my nervous system go into overdrive. I would have anxiety sweats often (okay, always), even when my seminars were a success.

After a day of teaching my nervous system would bristle with electricity for hours. I would need to go home and lie down, maybe nap, and just try to calm/soothe myself in order to do the whole thing again the following day.

I talked to my closest colleagues about this, tentatively, of course. I didn't want to reveal the true depth of my struggles as the university’s newest recruit. I was amazed and astounded to discover that not only didn’t other people feel like this, but that many of them enjoyed the feeling of being up in front of all those faces.

Wow, I thought, sadly. This must just really not be for me.

And yet, I knew the material. And I loved interacting with students, especially one on one. They taught me so much and kept me in touch with popular culture in a way I found exhilarating. I loved putting classes together, and choosing books and other resources to share, and endlessly discussing how fiction works.

I loved the security of a salary, too. Being able to go out for dinner without worrying about it, and buy new clothes if I saw something nice, and get gifts or cake for my friends without worrying about my bank balance.

Besides, I was doing the job. Nobody had pulled me aside to challenge me or even gently suggest improvements. Rather, people praised me for throwing myself into the role and getting involved with student projects.

It must be imposter syndrome, I thought. Because I’m female, and smallish, and I don’t wear academic-coded outfits. I don’t have a PhD, and I’m not classically educated, maybe I am a bit more working class than your average lecturer…

I just need to try harder. Worry less. Breathe deeper…

And so I kept trying. And napping. And sweating.

I found myself wanting to drink as a way of managing the stress I was feeling, and also to numb the intense awkwardness of after-work socials. I missed wine in a way I hadn’t for a long time. This is why I drank, I understood, time and again.

Alcohol used to help me relax after a day of teaching, and numb my anxiety the night before, too. Now I didn’t have that coping strategy, I had to face the feelings of inadequacy and fear and dread that came up, and it was exhausting.

And so, eventually, I got burnt out.

A doctor’s appointment led to two weeks off work and a psychiatrist appointment. They ruled out mood disorders, and suggested I struggled to emotionally regulate, which nudged me towards neurodiversity, as opposed to mental health (I’d previously self-diagnosed cyclothymia). There was a new medicine to try, and the recommendation of (yet more) therapy.

My drive to feel better and enjoy my life or maybe just my insatiable curiosity led me to keep digging into what precisely it was that I struggled with, and ultimately, I arrived at autism.

By this point, I had been struggling with ‘anxiety and depression' since a little before I got sober in 2016 (and possibly for a long while before that, but booze/blissful ignorance helped me to manage/ignore it) and so this quest to be ok had been with me for a looooong time.

My best friend worried that what was ‘wrong’ with me was that I always thought there was something wrong with me. And she had a point. But I felt sure that there really was something, too.

I struggled more than most of my friends, to manage my life and stay on top of everything, and I frequently had to laugh off mistakes and accidents I didn’t find at all funny, in order to save face or make others more comfortable. (People don’t love it when you beat yourself bloody with recriminations, I’ve discovered.) I was frequently forgetting my keys/laptop/appointments/printouts and even more often getting lost. I could not be relied on to arrive on time, generally. ‘Dizzy’ my dad used to call me.

Absent-minded. Forgetful. Chaotic. Others have said.

Learning about autism, I learned about executive functioning. And this, it turned out, was at the root of most of my struggles. It was why I struggled to keep track of what day it was, and which class I was teaching while delivering material. It was why I found cooking stressful and even, at times, distressing. Why I found it so challenging to get out of the house with all of the items I would need for the day ahead.

---

---

My struggles with executive functioning were why I sprinted towards diagnosis. And why I was overcome with joy and gratitude on discovering I could qualify as autistic. Because I had been struggling to get by, admittedly at a fairly high-functioning level, for so long.

The spiky profile of autism meant that I had a highly developed skillset - reading, writing, analysis, presenting (though it half-kills me) as well as an extremely under-developed skillset (basic navigation, scheduling, time-management, prioritising tasks), and this was very confusing.

Author illustration of the ‘spiky profile’ of autism

How could I be so competent and so incompetent?

And how is a person supposed to feel confident with such an absurdly uneven set of abilities?

---

Perhaps, people who recognise they might qualify for an autism diagnosis if they underwent one, don’t struggle with executive functioning in the ways I have. Perhaps their profile isn’t so spiky.

Maybe they have the ‘special interests’ and the sensory sensitivities, but not so many issues with procrastination, motivation and working memory. (I have a diagnosis of ADHD too, which adds a sprinkling of extra chaos to the mix.)

For whatever reasons, they don’t want to stake a claim under this autism umbrella which I am so glad to shelter beneath.

Some of my friends with a high number of autistic traits identify, comfortably (and with relief), as highly sensitive people (HSPs), which many in the autistic community think is a kind of stigma-free euphemism for autism.

Or perhaps HSP is simply a better fit for those with a number of autistic traits, but fewer defecits and challenges? Perhaps HSPs don't have the battle of competence vs incompetence that marks my days. Perhaps they don’t feel disabled by the frequent challenges they have just trying to get by in this world?

Maybe many people high in creativity and neuroticism could classify as neurodiverse, but don’t want/need to, because they are able to offer themselves the required self-compassion in the face of many deficits, something I have only been able to achieve with the support of a diagnosis.

I don’t know.

One of the (many) things I have struggled to learn/understand since beginning therapy and getting sober (and becoming generally more preoccupied with being okay) is that I can choose a path for myself and it only has to make sense and feel good for me. It doesn’t matter what other people do, and I don’t need to do the same as them. This goes for work, relationships, love, friendships, leisure. And pursuing a diagnosis.

---

Language is an imperfect tool, and the diagnostic and statistical manual of mental disorders changes all the time. Asperger’s syndrome disappeared from it very recently, and who knows what the popular thinking around autism will be in a decade or more.

What I do know is that getting a diagnosis helped me. More, even, than getting sober helped me. More than therapy, too. And since I got a diagnosis, I have felt more comfortable being, and accepting, myself. I have not used it as ‘an excuse’ (one reason some people seem anti-label) but as a design tool for necessary recuperation and living.

This year, for the first time, I am actually getting some help and support with my challenges, too. I’ll write about this, once I have processed and hopefully integrated some of the learnings. But these things have made the efforts of my sometimes-strange-seeming quest worthwhile.

In other words, I’m really glad the autism umbrella is big enough to have room for me.

And I guess the ability to hold space for different perspectives is probably a pretty important trait for a good teacher.

---

You can connect with the Autism community on Twitter. If you have a question, use #ActuallyAutistic or #AskingAutistics (or both). You can also visit The Autism Self Advocacy Network and the Autistic Not Weird Facebook page and website.

---

Chelsey Flood is the author of award-winning novels Infinite Sky and Nightwanderers, and a senior lecturer in creative writing at UWE. She is currently working on a literary memoir about getting sober and then finding out she’s autistic - Beautiful Hangover: how a late autism diagnosis helped me make peace with a drunken past, and a new YA novel.