An Extraordinary Child: Our Family's Autism Journey

Ever wondered if your child’s development or behaviour is normal? My husband and I did – for the better part of four years before we decided to discuss our observations and concerns with a developmental paediatrician.
In an effort to encourage other families to pursue any questions they may have about their child’s development or behaviour, and to increase understanding and acceptance of neurodiversity, I have decided to share our family’s journey towards receiving and embracing our daughter’s diagnosis of autism, a neurodevelopmental condition that affects how a person sees and processes the world.

My husband and I sat frozen, listening to our daughter in the next room. She was singing, repeating the melody of a silly made-up song we often sang to her perfectly. She was just five months old. We looked at each other. Did other babies do this? It was the first moment I remember thinking that perhaps our daughter was different.
Over the next four years the list of our daughter’s quirks grew and grew. At six months old we noticed she liked to flap her arms when excited – an endearing mannerism, we decided. At twelve months we found she was drawn to my collection of foreign language dictionaries, and would spend long periods flipping through the thin pages of these dense books, often on pram rides. A future linguist, perhaps? At fifteen months she began to put her already large vocabulary into sentences. ‘She’ll be an editor, just like her mummy!’ we said. At eighteen months she began lining up objects – cards, books, toy animals and coffee pods – with great focus and precision. ‘Her attention to detail is awesome!’ we boasted. From the age of two she drew very well and would do so for hours. She has her daddy’s creative flair, we reasoned. We also discovered she was always watching us, always listening to us – she was fascinated by adult conversation and loved to ask us deep and intuitive questions about life and the universe. The list of quirks continued, but since many of these quirks pointed to possible strengths – and she was meeting her developmental milestones – we figured she was simply a quirky, and probably quite an intelligent child.
But the challenges our daughter faced seemed to grow too. She’d been a fussy feeder from the very first day. Every meal was a struggle and few of the common strategies used to tackle fussy eating in babies and toddlers had any impact. A chronic digestive problem she’d had since the early months of life now worsened, perpetuated by her restricted diet and a new habit of withholding stools. Our daughter seemed to seek out certain sensory experiences with enormous enthusiasm – mouthing or licking toys and other objects well beyond the usual age, for example – while strongly avoiding other ones, such as warm bath water. Frequently, she seemed not to hear us at all when we spoke her name. Her emotional control seemed poor – and minor deviations from the usual routine could produce major reactions. Increasingly she preferred to stay at home drawing or working on her ‘collections’. She became more reserved among others – even close family members – clamming up or becoming distressed when others spoke to her directly. And over time the people around us began to notice some of these traits as well.
Looking back, it seems absurd that we sat on the fence for so long before we decided to put the question, ‘Is this normal?’ to a developmental paediatrician. In our defence, it was a very busy four years as we went from health professional to health professional in our efforts to support our daughter’s feeding and toileting difficulties. It didn’t occur to us that there might be a more encompassing explanation for the various challenges our daughter was experiencing. We weren’t afraid of labelling our child, as many parents are; rather, we were just extremely accepting of our daughter’s quirks. It took the clever eye (and sensitivity) of an occupational therapist who has extensive experience with complicated children to suggest that there might be more at play.
And so finally, when our daughter was 4 years and 4 months old, we saw a developmental paediatrician. We described our daughter and the challenges she faces each day. Could she be on the autism spectrum? I asked. Yes, she could, said the paediatrician. She discussed some of the subtle, and not-so-subtle ways in which autism can present in girls. After conducting an assessment, she told us our daughter’s various atypical traits and challenges were best explained by an autism diagnosis. Furthermore, she met the criteria for a formal autism spectrum diagnosis.
Following the appointment, I took my daughter to our local park. As I pushed her high on the swing, she giggled with glee, gazing at the verdant spring leaves in the huge camphor laurel trees above. My mind was far away, trying to process the news the paediatrician had just delivered. Was the diagnosis a surprise? No. Was I upset? No. Was I overwhelmed? Definitely. What would this diagnosis mean for our daughter in the short and the long term? Our daughter wasn’t worried, though. In that moment, she was entirely content: the colour and the patterns of those leaves were just so satisfying to her eye.
Several months on, my husband and I fully accept and embrace our daughter’s diagnosis. We appreciate that our daughter sees the world in her own distinctive and quite remarkable way, and that this can sometimes throw up difficult, distressing obstacles in daily life. We are forming a team of experts to guide us in supporting her better as she navigates the world, a world centred around neurotypical people. We have a clearer understanding of how to ensure her needs are accommodated as she heads towards school and, someday, the workplace. Most importantly, we are building a network of support and empowerment – families with autistic children and autistic teens and adults too – so that our daughter will grow up knowing that she is part of a larger community.
Since our daughter’s diagnosis I have realised I now see the world in a different way too. I see a world that is full of people who do not understand, accept or embrace diversity, and that saddens me, hurts me. In our house, my husband and I have begun to emphasise that there are lots of differences in life and that differences are just that – and certainly not ‘less’. In fact, sometimes, we say, they can be so much more. I hope, as our extraordinary daughter matures, that the world will learn to accept and embrace her difference, and discover that diversity of all kinds can be enriching – and often downright fabulous.
If you wish to learn more about autism, a great place to start are these materials from the Autism Self Advocacy Network.
If you are keen to understand the autism assessment and diagnosis process, please see the overview from the Raising Children Network.
If you have ongoing concerns about your child’s development or behaviour, don’t fence-sit! Speak to your GP about your concerns and ask whether a referral to a developmental paediatrician is appropriate.
 
You might also like:
Embrace Autism as a Vital Difference
Something to Embrace: Autism Acceptance with Princess Aspien
The Boy Who Loves School: An ADHD Story
My Wonderfully Creative Brain: An Adult ADHD Story

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