Music Monday | Everything Matters (feat. Pomme) – AURORA

Music Monday has been absent for a couple of months, largely because music has been absent. Instead, I’ve been listening to podcasts and audiobooks, as well as reading hard copy books, devouring as much information on autism–especially in relation to women–as I can.

Podcasts I’ve listened to include Autism in the Adult, Adult with Autism, Autism and Outer Space, The Late Discovered Club, Springbook’s Converge Autism Radio, The Special Interest, The Neurodiversity Podcast, and Autistic at 40.

Some of the books/audiobooks I’ve read include The Autistic Brain: Exploring the Strength of a Different Kind of Mind and Visual Thinking: The Hidden Gifts of People Who Think in Pictures, Patterns and Abstractions by Temple Grandin, Women and Girls with Autism Spectrum Disorder: Understanding Life Experiences from Early Childhood to Old Age by Sarah Hendrickx, Life on the Autism Spectrum: A Guide for Girls and Women by Karen McKibben, Spectrum Women: Walking to the Beat of Autism Edited by Barb Cook and Dr Michelle Garnett, Late Bloomer by Clem Bastow, Diagnosis Normal by Emma A. Jane, and finally, Different Not Less: A neurodivergent’s guide to embracing your true self and finding your happily ever after by Chloe Hayden.

In addition to books about autism, I’ve also read Maggie Smith’s memoir You Could Make This Place Beautiful, Stephanie Foo’s What My Bones Know and Rijn Collins’ Fed to Red Birds.

Of all these, only Fed to Red Birds is fiction.

It’s hardly surprising to me now, that my preferred reading material is non-fiction. Or that I disappear into tunnel-vision and consume only information related to one thing for an extended period of time–the same thing happened when my partner was diagnosed with primary central nervous system lymphoma. Apparently, it’s quite common for autistic people. And, after a formal evaluation consisting of more than ten self-assessments, a parental assessment, partner assessment, and three diagnostic interviews, a diagnosis of ASD Level 1 was confirmed about a month ago. While I had compiled an extensive document outlining my traits, personal history, and how I believed I met the DSM criteria, and while I had tested above the threshold on all the available online self-assessments, I still didn’t know if a diagnosis would be affirmed. I didn’t know if my parental and partner assessments would recognise the same characteristics and traits I see/hide in myself. But they did. Last week, my report arrived. It is confronting to acknowledge that for almost all of your life, you’ve been unaware of the specific reasons that challenges show up for you, even when you’ve been aware of the challenges themselves. It is strange to read about your life experience in the context of a set of conditions and behaviours which are typical to people with your neurotype when you have felt so atypical.

Yet, here we are.

And if further evidence was ever required (it’s not), I’d like to present the following. About a week ago, I was reading a post on Instagram written by an autistic person talking about self-regulation. They mentioned movement, dancing, and listed some of their favourite artists. One of those was this artist. AURORA. The first song of hers I listened to, Everything Matters, has been the only song I’ve listened to for over a week. It is in my Spotify, set to repeat. My drive to and from work is approximately half an hour, depending on traffic. The song is three minutes and thirty-six seconds. Which means I can listen to it at least eight times in full, and have done, for the last week and a half as I travel to and from work.

Here it is.

Music Monday | You Can’t Rush Your Healing – Trevor Hall

Je travaille beaucoup. I work too much.

I have been thinking about how much I work. Why. And have come to the following conclusion.

Work is a safe space.

When I interviewed with my current employer, during the second interview I was asked:

What would you say your biggest weakness is?

I have been told never to answer this question in the personal, so I said that my weakness would be the limitations coming into the role being that it was not something I’d done before. My knowledge and skills would take time to build but that, having studied for a different technical role in the past, I didn’t feel it was out of my reach.

No, the interviewer (and manager-to-be) said, what is your biggest personal weakness?

‘I work too much,’ was the answer that immediately popped into my mind. Followed by ‘that is such a wanky thing to say, you can’t say that out loud.’ So instead, I said “I’m sorry, I can’t think of anything right now.”

Later, when I spoke to one of my referees, a former manager, he told me he’d answered that question by saying that I work too much; that I have a hard time saying no, that my work/life balance boundaries are non-existent and that they would need to watch me to make sure I do not burn myself out.

Fuck, I thought. That’s exactly what I had wanted to say—but who says, “I work too much,” and has the prospective employer both believe them and agree it’s a bad thing?

I am at work on overtime tonight.

Last week, I worked my two night shifts (12 hrs), one day shift (12hrs), and then attended a leadership training program in Melbourne for two more days; up at 4.45am, drove to the city (150km), participated in training, drove home, arrived approximately 7.45pm, ate dinner, walked the dog, and got ready to do it again. On the Friday, I had another additional eight-hour training day.

Which means in the last seven days I’ve worked 68 hours.

But other than the training, which is not in my comfort zone, I like being at work.

When I am there, I am surrounded by people who are largely like me. Most of us have specific, common traits that make us good at what we do, though perhaps not socially savvy. I am beginning to realise how sheltered I have been in this regard; protected in a way that I would not have, had I worked in a more relational role, or something that is front-facing with customers.

On Saturday, I completed the first of my autism assessment paperwork. There were nine documents to fill out in total. Plus, the standard consent and intake forms for the psychologist. On Thursday, I will have the first of several appointments to discuss my answers and undergo evaluation.

G is worried about how I will feel if the assessment is negative. It’s a valid concern. I am looking for something I can point to, something I can grab and show people and say “Look! Look at this here. This is why some things feel so impossible for me. Why certain supposed normal activities exhaust me. Why I have struggled so much.”

But as G observed today, I don’t look like I struggle. And that is the gap that I slide into—the crack I fall through—and have done, probably, for years. I have developed tools and strategies, whether maladaptive or not, to somehow maintain an appearance. And it is so goddamn exhausting. The struggle is almost entirely internal. And yet, it’s not. Because shortly after G said that I don’t appear to be any different to anyone else, he also admitted to adjusting his own behaviour and language to mitigate the impact of my behaviour on him, in particular circumstances. Which means my struggle with communication, my need for information and detail, does impact the people around me.

In Australia, and in Melbourne particularly, we experienced extended lockdowns during the early days of the pandemic before vaccinations were commonplace. Most people lamented being locked indoors with their families. Most people were ready to begin mixing in society again the moment they could. Most people were frustrated with the rules of when, where, and with whom you could leave your house.

Not me.

Despite the small issue of G undergoing cancer treatment during the worst of covid, I thrived. As someone who had previously believed they were an extravert, and needed people, I discovered a strange truth; that I’d rather be on my own. Or, at least, with very few people. And less frequently than I’d thought.

I learned I loved zoom because I could pretend to have eye contact without actually looking at someone. And, I could watch my own face to make sure it looked calm, relaxed, pleasant, happy. I found that I had been forcing myself to socialise in instances when I’d rather not because I believed it was what I was supposed to do. But I’d rather be at home, avoiding the world, and simply focusing on the things I found interesting. There are so many things I find interesting.

The shock of it has been unnerving. And joyful. It took until lockdown number six for me to become overwhelmed but I have realised that was due to the constant changing of routine, not the fact that we were supposed to isolate again.

Everything points to an affirmative diagnosis. But whether or not I will be able to prove that what I experience has been present my entire life is what will potentially pause the process and invalidate the final result.

Right now, I’m not sure if seeking a formal diagnosis is the right thing but as I have told everyone, my purpose in pursuing it is to more easily engage targeted assistance and therapy for very particular challenges of communication. For the rest of it, I am fortunate that I have set my life up in a way that generally works for me on most other levels.

And so, I work, a lot. Because at work, I feel safe.