I thought the newborn stage was meant to be this hard – then I discovered I’m autistic
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The ACT has a new Minister for Disability, Autism and Neurodiversity in Suzanne Orr. In a guest post, social worker and mother of two Annelies Grogan considers her own path to an autism diagnosis and how visibility leads to understanding.
Before I had my babies, I felt like I had the whole adulting thing sorted. But afterwards, everything seemed to take a huge amount of energy.
Suddenly, I could barely manage the basic interactions required to go shopping or get through a medical appointment. My toddler and my baby were relying on me, and I was falling apart. I had to figure out why.
We lost our first baby four months into my pregnancy. When a baby dies – especially a not-quite-baby, who mostly existed as hopes and dreams – there are no social scripts, no set rituals or ceremonies to follow. No one knows what to say to the bereaved parents. This left me isolated and uncertain. I wanted some structure for how to move forward at a time when I was completely stuck, and our society seemed to have nothing to offer. Until I found what I needed in books. Baby loss books, miscarriage books, grief books. Lost in their pages, I wasn’t alone. The hollow pit in my stomach, my achingly empty arms, started to make some kind of sense. The books helped me find words to talk about what had happened. I realised that reading has always helped me understand people better.
Two years and a traumatic birth later, our son was in my arms. I was astonished, in the best possible way. It didn’t feel like I would ever get here – holding our beautiful healthy baby. After we got home, I sat breastfeeding him beside the nursery window. The view was familiar, but everything felt different. I looked at my baby; touched his soft, perfect skin. Was this real? Now the moment was here, I wasn’t sure it belonged to me. Perhaps because I didn’t have much sense of a “me” who really existed. My sense of self was entirely consumed by my new parent role, and I thought this was normal. My instinct was always to fit unobtrusively into any situation. But this situation was an entirely new way of life, and I was disappearing. It felt like drowning.
When I was diagnosed with postnatal depression, I wasn’t surprised. And yet, I wasn’t sure I was depressed. It was more like a nerve was exposed. Every sound was too loud, lights too bright. Touch was overwhelming, which was hard when breastfeeding. I struggled to talk to others, to be in busy or noisy places, and especially to follow conversations with more than one person. In my sleep-deprived state my thinking was very literal, and often jokes and metaphors passed right by me.
These struggles were clues to what was going on for my brain, but events at the time meant I completely missed it. We were in and out of Covid lockdowns. Responding to the pandemic involved constant social re-adjustment, and everyone around me also seemed to be having a hard time.
By the time our second son was born, lockdowns and social distancing felt like a distant memory. There were more options for support after my second round of birth trauma. Healing began with the help of a support group, therapy, and many more books.
Bonding with a new baby while my broken body slowly recovered was the most vulnerable experience I’ve ever had. It opened the door to caring more for myself. As my self-compassion unfurled, I began to think there must be a bigger picture to the way I show up in the world. A pattern to the things my brain and body struggle with. I began to realise that things did not have to feel this difficult.
That realisation was partly thanks to all those books. Reading about trauma led me to books by women who had discovered how to support their nervous systems through times of adversity. Grace Tame, Amy Thunig, Chloé Hayden. Strong, articulate, autistic women. Reading their words felt like coming home. My lifelong fear of not fitting in eased, as it dawned on me there was probably a whole group of people I did belong with. It was time to find out if I was right.
I had my autism assessment with a private psychologist, aware of my privilege in being able to afford it. I was also lucky that my mother was happy to be interviewed about my childhood. I diligently filled out questionnaires, provided a selection of awkward adolescent diary entries, and finally had my three hour interview.
When I received my diagnosis, I was so relieved. The excitement of what I’d discovered about myself had been justified. There was sadness too. For my past self, and for my babies. Their mother could have been in better shape emotionally, if I’d understood more about what I needed. But mostly, there was the overwhelmingly reassuring feeling of being seen and understood.
Autistic Canberrans may be feeling more seen recently, with autism now explicitly named within an ACT ministerial portfolio. Suzanne Orr’s appointment as the new minister for Disability, Autism and Neurodiversity is significant. Meaningful progress will take time to emerge, but the recognition speaks to the needs of autistic people. We are here, and the better our needs are recognised, the more we can participate in our community. This is especially timely now that many of us who were missed are discovering our autistic identities.
Autism in women and girls is often missed, because understandings of the neurotype are mostly based on the way it presents in males. But according to the Australian Bureau of Statistics, there was a 95.5% increase in the number of diagnosed autistic females in Australia between 2018 and 2022 – the numbers almost doubling in four years. I find it encouraging that a significant proportion of these newly diagnosed women and girls were under 25.
An earlier diagnosis could not have lifted my crushing grief. It would not have stopped me having babies, or prevented the physical and mental trauma during their births. But I would have felt a little less broken after each of these events, if I had understood more about what my brain and body needed. If I’d known that my needs are important. Knowing that I’m autistic, it’s much easier to give myself grace. It’s easier to be me.
Now I work as a social worker with expectant and new parents. Every new baby is different, and there’s a lot to cover in a short amount of time. Every parent is different too, and many are neurodivergent – diagnosed or not. Amongst it all, there’s one message I bring with me every time. “Your needs matter. YOU matter. And if you’re not sure who that ‘you’ is, I’m here to help you figure it out.”
Main image by Helena Lopes
