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 Chloeโs 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, โThere are a lot more assessments to be done, but at this stage I believe your daughter has Aspergerโs.โ (We donโt use the term โAspergerโsโ these days; weโre always learning and growing and doing better! Now itโs part of the broader Autism Spectrum Disorder.)
Years of parenting my precious, quirky and at times fragile child flashed before me โ 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 Aspergerโs Syndrome by Tony Attwood, and told me to start reading it, then to come back in a fortnight. Iโm so ashamed to admit this now, but as I walked out to the car โ the big, fat book under one arm and my subdued, confused daughter following behind me โ I started crying. Really, really sobbing. Years of parenting my precious, quirky and at times fragile child flashed before me โ and my heart broke. As soon as I sat in the car, I picked up my phone and googled Aspergerโs syndrome. There, in black and white, was the exact description of my daughter. Chloe then picked up the book and quickly read the blurb. โMum, this sounds exactly like me!โ As I found myself crying even harder, I nodded in agreement with her.
โIs it really that bad?โ she tearfully asked. Seeing the concerned look on her face, I realised I had to put on a brave front. โNo, of course not, itโs nothing,โ I said. โIf itโs nothing then why are you crying so much?โ she asked. Touche. I would like to add here โ contrary to what Chloe believed at the time โ 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 โ in my humble opinion โ parented Chloe exactly as she needed (most of the time; no oneโs perfect) and instinctively made adjustments as we went along. Itโs one of the reasons I so strongly believe that parents are the best professionals when it comes to their own kidsโ 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 Hoffmanโs 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 โrain manโ in that 1988 film, but Raymond sure as heck didnโt 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.)
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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 โautisticโ 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. Iโm informed and Iโm 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 โ 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 Chloeโs. 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. Itโs the exact smile I give to my own clientsโ parents all the time.
Edited extract from Parenting Different (Murdoch Books) by Sarah Hayden, out now.
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