From the moment Chloe was born, she was a difficult sleeper. Years later I found out why

Looking back, I can see all the signs – now that I know what they are, of course. Hindsight is a wonderful thing. From when Chloe was incredibly young, we always referred to her as “quirky”. Being young, inexperienced parents, and this being our first child, we had no one to compare her with.

Sarah Hayden with her daughter, Chloe, who plays Quinni on Heartbreak High.

From the moment Chloe was born, she was a difficult sleeper. It felt like she never slept. Like, ever. If she did, it was in tiny bursts, a few minutes here and a few minutes there – and only if she were being held tightly or rocked. She was colicky, uncomfortable and whingey, and leaving her alone in a bassinet or cot simply was not an option. She was, at all times, attached to one of us.

As she grew older, she complained about the intensely itchy woollen tights that she wore. We would joke that she was like the princess in the classic story The Princess and the Pea, in that she could feel anything and everything – no matter how small or seemingly insignificant. Even the tiniest of tags on her clothing caused her so much pain and discomfort, it was like she was wearing a cactus. I became the master of removing them. If I left even a single stitch, there would be screaming and tears, and not just from her!

From the age of around 18 months, when she took her first steps, Chloe walked on tippy-toes or with her feet on a strange angle, wearing one side of her shoes out before the other (something she still does). She adored music and dancing but would fall over constantly. She despised loud noises and lights despite being very, very noisy herself.

As a primary schooler, Chloe would sit and recite facts she had learned from various encyclopedias she had read late into the night, then kindly offer these facts to anyone she came across. Curiously, she appeared neither concerned nor interested in whether the people she was sharing with were actually listening – it seemed more important to her to just put in front of as many people as possible the information that there were, in fact, 60 species of kangaroos.

She was gifted at drawing and writing stories, but her handwriting was completely illegible (she would explain that her hands couldn’t keep up with her brain). At school, she was uninterested in the other kids and preferred to spend free time collecting insects and saving injured birds. Most teachers seemed to love her; her classmates not so much. (The teachers who didn’t love her, meanwhile, were the ones she would correct all the time. She was right, they were wrong, and funnily enough, they did not like that one little bit!)

It was at high school that we – and Chloe herself – really noticed how different she was. She seemed so young and naive compared to the other girls. Her school reports were rapidly getting worse and consistently described her as disorganised, messy, loud and chaotic. One day, I received a phone call from a concerned library teacher asking me if I was aware that Chloe hid in the library during every single recess and lunch break, and quietly ate her food in the toilets to avoid others. Every day ended in tears as she was subjected to the torment of bullies who preyed on her differences.

Life was getting more difficult – for her and for us. When one of her teachers quietly pulled me aside and asked if I had ever considered taking Chloe to see an educational psychologist, I was genuinely shocked and confused. I never even considered doing such a thing. After all, our child was wonderfully perfect just as she was. But I was also at a loss for what to do about the emotional distress she was experiencing.

So not long after, I found myself sitting in a room with my daughter and an educational psychologist. Our initial appointment lasted a couple of hours and included the psychologist taking a full history of Chloe’s childhood, as well as all the information that had been given to her from the school. At the end, the psychologist casually looked over her glasses and said to me, “There are a lot more assessments to be done, but at this stage I believe your daughter has Asperger’s.” (We don’t use the term “Asperger’s” these days; we’re always learning and growing and doing better! Now it’s part of the broader Autism Spectrum Disorder.)

Years of parenting my precious, quirky and at times fragile child flashed before me – and my heart broke.

SARAH HAYDEN

Seeing the look of utter confusion on my face, the psychologist handed me an encyclopedia-sized book, The Complete Guide to Asperger’s Syndrome by Tony Attwood, and told me to start reading it, then to come back in a fortnight. I’m so ashamed to admit this now, but as I walked out to the car – the big, fat book under one arm and my subdued, confused daughter following behind me – I started crying. Really, really sobbing. Years of parenting my precious, quirky and at times fragile child flashed before me – and my heart broke. As soon as I sat in the car, I picked up my phone and googled Asperger’s syndrome. There, in black and white, was the exact description of my daughter. Chloe then picked up the book and quickly read the blurb. “Mum, this sounds exactly like me!” As I found myself crying even harder, I nodded in agreement with her.

“Is it really that bad?” she tearfully asked. Seeing the concerned look on her face, I realised I had to put on a brave front. “No, of course not, it’s nothing,” I said. “If it’s nothing then why are you crying so much?” she asked. Touche. I would like to add here – contrary to what Chloe believed at the time – that I was not crying over the fear of having an autistic child as much as I was for the overwhelming regret and sadness that I had not known about it for 13 years.

I would also like to add, in hindsight, there is actually not much I would have done differently if I had known. We (very) successfully – in my humble opinion – parented Chloe exactly as she needed (most of the time; no one’s perfect) and instinctively made adjustments as we went along. It’s one of the reasons I so strongly believe that parents are the best professionals when it comes to their own kids’ needs.

The following months were an emotional whirlwind of very expensive and lengthy appointments and assessments until we finally got the official diagnosis (discovery), some 58 pages long. Chloe Hayden: AUTISTIC. My firstborn child. My perfect daughter. My gorgeous, smart, quirky little genius. Autistic?! But she was nothing like Dustin Hoffman’s character Raymond Babbitt in Rain Man! And, sadly, in the year 2010, that was the only autistic representation in the media. Not that there is anything wrong with the “rain man” in that 1988 film, but Raymond sure as heck didn’t look like my little girl, so you can understand why autism was not something I had considered. (Thank God for Quinni on Heartbreak High! Rocking autistic representation since 2023.)

I was absolutely shocked, confused and devastated but there was also a tiny part of me that was relieved that we finally had an answer to why Chloe had been struggling so much, especially at school. I found myself reading whatever I could get my hands on about the subject and was astounded to see that pretty much every description of autism in females summed up my daughter perfectly.

The older Chloe got, the more “autistic” she appeared to become. Even when we began to school her from home, she needed me to help her with each step of her studies, and I began to see firsthand why school had been so hard for her. On the flip side, so much of her anxiety and sadness seemed to disappear overnight. Chloe was always intelligent, an incredible writer with very mature insight, yet she struggled to cross the road or read a clock.

At that time, I thought she would never go on to further education, never hold down a full-time job, and I prepared for the possibility that she might live with us forever, which I was on board with. As long as she was happy and mentally OK, I was OK. I could not see her ever having a partner and could not even dream of her becoming a mum. But we continued to encourage her, celebrating her unique qualities and accepting her limitations, as we saw them.

My attitude has changed enormously since she was first diagnosed. I am no longer scared. I’m informed and I’m her biggest advocate. She is unique, she is beautiful and she is creative. We love her and we love her autism. I know when she needs hugs and I know when she needs to be left alone. I also know how wrong I was to project my fears and limitations onto her – that was not my role as a parent.

I am also absolutely positive the psychologist knew within seconds of meeting Chloe that she was autistic, and we probably could have saved ourselves many months and many thousands of dollars for the autism assessment. In our very first session with her, the psychologist walked out and formally introduced herself, holding out her hand to shake Chloe’s. Chloe responded by pointing out that the poster of whales in the waiting room was wrong, as it contained factually inaccurate information, so she should not have it hanging up.

The psychologist looked at me with a knowing smile as Chloe barged past her and into the room to line up the toys in her clinic. I now know that smile. It’s the exact smile I give to my own clients’ parents all the time.

Edited extract from Parenting Different (Murdoch Books) by Sarah Hayden, out now.

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