diagnosis is rebirth

2011

Dear Diary,

Camp is tomorrow. It’s gonna be the last one with Tiana and Jack because they’re in grade six. I’m sharing a room with Tiana and Rachael and some other people but it’s weird because Anne is gone and I feel like Rachael doesn’t like hanging out with just me. I haven’t left yet and I already want to come home. I don’t like sleeping when I know people can see me and I won’t know what food they’ll have, and I know I eat slow, and people will notice. Last time at Phillip Island camp I remember they gave me jelly for dessert, and I ate it all even though I hate jelly and it feels weird in my mouth. I wanted to cry but everyone else at the table really liked jelly. I don’t want to go to sleep tonight, I don’t want it to be tomorrow yet.

I don’t know how not to worry, been thinking this way for so long. I remember being eleven years old, sitting on the bus on the way home from camp and watching the suburbs go by. The bus was filled with chatter, a quiet kind of hum that lulls you to sleep and keeps you company. We’re driving from Waratah Bay to Macclesfield, and I can’t tell where we are, but I feel like I’ve been staring out the window for hours. The sky was a painting blended with messy brush strokes — the grey swirls glowing as the sun set behind the clouds, rain breaking through. I had thought that it would rain and maybe then I wouldn’t be able to see what was in front of me so clear. Maybe then I’d stop looking.

I hadn’t seen such a vast, flat space filled by so many houses before, all lined up in neat rows. And there was barely a tree in sight. It’s like we had gotten to a certain point and all the trees had disappeared to make way for houses. I kept thinking about what it meant, and the chatter of the bus faded around me.

‘What are you looking at?’ Tiana asked, leaning back into her seat.

She’d been turned sideways and bent over the arm of her aisle seat, talking to the people across from us. Matt, her crush, who she probably would’ve rather sat with. I wouldn’t have minded, preferring both to sit by myself, and to not be surrounded by people who didn’t particularly want to be sitting with me in the first place.

‘Nothing,’ I said, eyes locked onto the world going by. ‘Do you think we’d ever run out of trees?’

‘Uh, no? Like you can literally just grow more, whenever you want.’

‘I guess,’ I said, unconvinced.

But what if we cut them all down and didn’t grow back the same amount? What if we cut down too many all at once? What if they didn’t grow back fast enough?

‘You’re so weird sometimes, Carly.’

I could feel Tiana looking at me before she turned back to Matt. I forced my eyes away from the window and stared straight ahead at the squiggly rainbow pattern that wrapped around each bus seat. I traced my fingers over the prickly swirls, one by one.

We’re going to run out of trees. We’re going to run out of trees. We’re going to run out of trees! And I can’t do anything because I’m me: I’m small and I’m useless and too shy and quiet.

The new housing estates went by and by until the country came back closer, and I began to feel soothed by the bush and the hills. But the feeling of knowing I was small and helpless stuck with me. It never wanted to leave. My brain would keep telling me ‘Carly you are weird and different and small and silly. You’re thinking about the world running out of trees while you’re almost twelve and still collecting Barbie’s? What is wrong with you’.

I think I was anxious before I even knew what that word meant. Constantly noticing things I didn’t want to notice, my own voice in my head stuck on a loop, trying desperately not to stick out. But I always did.

2017

Dear diary,

Today we had to do fake job interviews at school. I hated it. I didn’t have the right outfit — like everyone else looked really proper and nice and I had an ugly brown dress that felt too heavy and baggy. There were a bunch of interviews happening in one big room and it felt crowded and other teachers were walking around the room and watching. The lady only asked me one question and I couldn’t do it. I don’t know why. I didn’t want to look at her and the whole room felt busy and overwhelming. And I cried. It wasn’t even a real interview and I cried. So afterwards I got called into Ms Fletcher’s office and she asked me if I needed help writing a resume or needed more practice interviews. I didn’t know what to say. How is she going to help? I don’t want careers advice. I wanna be able to talk to people I don’t know and be able to look at their faces. I don’t want to be forced to do stupid fake interviews about a job I would never apply for. I’m so tired, everything takes so much energy.

The careers counsellor sat across from me in her office, hands clasped in her lap, one leg crossed over the other. I stared at her legs and tried to get myself to drag my eyes away from her very muscular, bulging calf muscles. My eyes trailed downwards to her manicured pink toenails and block wedge heels that made me worried for her ankles.

‘Carly,’ she said, jarring my thoughts away from her toes, ‘let’s talk about this decision so we know it’s the right one for you — it’s something big to decide, not getting an ATAR. It’s going to impact which universities you’re getting into, but also how long your tertiary education will take and possibly what future employers will consider when looking at your CV.’

I resisted the urge to roll my eyes or correct her. As if an employer was going to be looking at my ATAR after I finished uni; I found it incredibly hard to believe. I’d done all my research and knew exactly what I was doing. I didn’t need her to tell me anything.

‘I don’t need an ATAR to get into the course I want. And once I finish that course, I can go direct to a diploma and then a degree. The advisors at Swinburne told me I can also get credit from those previous courses to shorten my degree.’

‘Sounds like you’ve thought about this a lot,’ the counsellor said and smiled, her pink lips sticking to her teeth.

I couldn’t help but think about the last time I had sat in this office, getting stared down by the same counsellor who I just couldn’t believe actually cared about me. I was so tired of having to explain why I didn’t want to follow the plans that they preferred, whether it was my pathway to higher education or how I dealt with stupid fake job interviews.

‘I have thought about it a lot. And my parents are fine if I don’t get an ATAR, as long as I have a plan in place.’ I glanced at the form that sat on the desk between us. I just needed her signature and then I wouldn’t have to do exams ever again.

‘Alright, that’s good enough for me. We’ll still be meeting again like everyone else at the end of the year when you apply for courses though.’

I nodded, looking back at her toes. I found it interesting that she cared so much about whether I was getting an ATAR or not and what university I was going to, but didn’t seem to care about what had made me breakdown crying during a mock interview.

I wished someone had just asked or had been curious or cared enough. Maybe then I wouldn’t have been burdened with a late diagnosis and years of trying to unlearn unhealthy habits.

2022

Dear Diary,

For so long, it felt as though I was looking down at myself from the top of a deep well and wondering how I would ever pull myself back out. Me, who I’d buried for so long, changing and adjusting myself to fit each scenario perfectly. Always watching and learning, blending as best I could. But each time, I felt like I was splitting into another piece of myself. I remember this crisis I had when I was like fifteen, where I developed a theory that all people had a true self hidden within themselves, buried away. I remember writing and writing about the ‘shell’ I kept myself in and worried that if I ever revealed myself, I would have no friends left. I think about who I used to be and how different my life would have been if someone had just seen me. How different my life would be if I had just had an answer, an explanation, someone who could tell me it was okay — however I was, whatever I felt. Knowing what I know now, and having autism as my answer, I feel like I can move on. Like a new chapter of my life is starting where I can be completely honest with myself and those around me. I can’t wait to see what the future holds and I’m so happy I am here.

Music played softly in the background as I organised my room. On my bed sat my binder filled with K-pop photocards, freshly categorized by group and then member. My friends were set to call me in twenty minutes, and I was carefully arranging everything around my bed: water bottle, snacks, unicorn teddy-bear, laptop, and chargers. Usually, I would feel anxious at the thought of someone calling me, scheduled or not. But I felt okay. There wasn’t even an expectation for me to participate in the call, to even talk. I was happy to be involved and included and just listen. It felt like it would be a big effort to speak at that moment. A feeling was swelling in my chest like a balloon getting bigger, ready to pop. I didn’t know what the feeling was, unable to find the words. Despite knowing I had difficulties defining feelings and emotions and despite having resources and charts that helped me figure out what was happening inside my head, I still couldn’t put my finger on what the feeling was. Queasy but not sick, anxious with no explanation, tired for no reason, grumpy and sensitive. Whatever that was, it made my mouth slam shut and my lips stick.

The thought of starting a conversation with someone new or going out made me want to crawl into a ball and hide. But I knew I would feel better spending time with my friends. They knew me and I didn’t have to hide. I remembered my conversation with Jess a few weeks back, when I had told her it was too hard for me to speak sometimes.

‘I understand,’ she’d said. ‘I mean, I might not know exactly what it’s like for you, but sometimes I just need a break and won’t reply to messages or things like that for a while. Sometimes I just need time alone to rest or recharge, so I get that.’

And while it wasn’t the same, it was enough. She got it — sometimes things were too hard, and we had to deal with them in our own way and whatever way that was, was okay. If it meant sitting with my friends from across the world and just listening to them speak, that was okay.

The friends I had made in the past year or two had become extra special to me. It was easier to introduce myself as who I was to someone new, than to attempt to re-introduce myself to an old friend and try and change their ways of thinking towards me. The habits I’d made around these friends were good and healthy and they made me happy.

My phone started vibrating next to me, jolting me out of my thoughts. The screen showed a request for a video call and accepted, holding the phone up in front of myself. Jess and Areeba’s faces appeared, loading one by one, slightly grainy and fuzzy. I couldn’t help the smile that spread across my face.

‘Carly! How are you?’ Areeba asked.

‘I’m okay,’ I said, slipping my hands inside the arms of my hoodie and resting my chin on them.

‘We’re going to watch a Run episode, uh episode eighty-seven I think it is. The one where Hobi is like running away from Jungkook and stays against the wall.’

I nodded, smiling. ‘That episode is so chaotic.’

‘Do you need the link?’

I shook my head, pulling up the episode on YouTube.

‘When you’ve got it up, we’ll count to three and press play.’

I hummed out a mm-hmm, plugging my headphones into my laptop to avoid feedback. ‘Ready.’

I balanced my phone against my computer screen and leaned back, slipping my hands back inside my hoodie. I took a deep breath and got ready for what would be a two-hour-minimum call.

I liked the way my name sounded with their accents and the way they could talk and talk, and I wouldn’t have to worry about filling any silence. I liked that we shared the same interests, and I could get excited and loud and talk about the same topic for hours. I never felt myself looking outward to check on myself, to see if I was acting right. I never pretended to know things to go along with conversations or to spare myself embarrassment. I felt safe to ask questions, to speak up when I was confused. I noticed how much energy I gained instead of losing when I hung out with them.

And I was so happy.

Now

I only really wrote this piece because I keep thinking about my past self as a little child I hold in my arms, in my memories — so gentle. My heart hurts thinking about them, someone I just want to save. I imagine me as a time traveller, going back and back, sitting next to myself on that bus on the way home from camp. Giving them a smile, giving them a hug. Telling them that they are not an alien on this planet that no one will understand and that one day, everything will be okay.

“I am so utterly relieved to finally have an answer. I had no idea life could feel this good. Diagnosis is rebirth.”

Sarah Martin, The Guardian 2021

Note: The stories in this piece reflect my recollection of events. Some names and identifying characteristics have been changed to protect the privacy of those depicted. Dialogue has been re-created from memory.