The Inspiration Behind An Unusual Boy

Read Fiona’s latest article featured on Mamamia below or to see the full article on the Mamamia website click here.

Everyone’s a bit unusual,’ my mother used to tell me as a child, ‘but some are more unusual than others.’

Growing up, I was a slightly quirky kid; I had an over-active, intrusive imagination. My sense of difference was masked by decoding other children’s social cues, by writing poetry and by non-stop book reading. I was an ‘unusual girl’, or at least, I felt that way.

My mother wasn’t worried – after all, my hyper-focus on academics was a socially acceptable kind of unusual. It’s not something I talk about much, even now, as the experience was uncomfortable. I suspect I’ve channelled some of that into my latest novel, An Unusual Boy.

My sense of being ‘different’ as a child extended well beyond myself. At an early age, I learned how ‘unusual’ my home environment was compared to most of my peers; I was part of a family who cared for a disabled, neurodivergent father.

Over twenty years, I watched my father lose his skills, develop prominent dementia and regress from a walking stick to a wheelchair to institutionalised confinement. While my father doesn’t appear in An Unusual Boy, this lived experience of being a ‘carer’ (and there are 2.7 million of us in Australia) certainly informed some of the family dynamics represented in the novel.

In my adult life, I’ve been lucky enough to meet, love and work with people who might be considered ‘unusual’ or ‘neurodivergent’. As a parent of three, I’ve developed cherished relationships with children who are deemed by the world (or self-identified) as not ‘neurotypical’. Some of these loved ones have a diagnosis – including ADHD and autism – but many don’t.

As the godparent of one such child, I have spent fifteen years walking alongside that family; enduring a merry-go-round of appointments, bureaucratic bungling of funding and other supports, watching and weeping and celebrating as they’ve navigated often tactless and uninterested ‘systems’.

It’s these systems set up for so-called ‘normal’ – when we all know there’s simply no such thing – that I’ve tried to draw attention to in my book. Like the characters within, I’ve known too many parents who have had demoralising or discriminatory interactions with school administrators about why their child’s additional needs cannot be accommodated, or disrespectful and dismissive encounters with medical and allied health professionals.

That’s not to say that all people who work with children with complex needs are failing to prioritise inclusion and access in their work. Most are incredibly dedicated and supportive; but some, unfortunately, are not. Meanwhile, vast numbers of families have also incurred a huge emotional and financial toll as they’ve navigated the NDIS, trying first to make sense of it, then scrambling to find ways to pick up the slack on what it won’t cover.

The Donnells are one such family, whose initial experience with the NDIS was challenging.

Megan Donnell, mother to Isla and Jude and CEO of the recently established Childhood Dementia Initiative, explains:

“The NDIS caseworkers seemed to understand physical disability very well, but not neurodivergence or intellectual disability. They would say things like, ‘You don’t need support, because your child can walk.’ And the problem for me was, my kids were hyper-mobile – not only could they walk, they’d often run at speed out onto a busy road.”

In the four years since, Donnell has noticed an improvement in caseworker understanding, as well as increased public acceptance of her children’s challenges as they’ve become more overt.

“It’s interesting that when Isla and Jude were younger, before it was obvious they had a disability and they still appeared relatively ‘mild’, they were actually less tolerated by the general community than when their challenges became very obvious. Once the world began to see the severity of their issues, they were tolerated more. But tolerated isn’t the right thing: they should be included.”

Benison O’Reilly, author of books on motherhood and autism including The Complete Autism Handbook, is no stranger to these kinds of experiences. Her third child was diagnosed as having Level 2 Autism Spectrum Disorder and, despite familiarity with the medical system (O’Reilly’s husband is a paediatric specialist GP), their family still endured paternalistic attitudes from medical sources.

“Even with our background, we encountered some hostile medical professionals. Not everyone, of course, but sometimes if Sam didn’t conform with a particular agenda, they would be very abrasive and speak down to us.”

O’Reilly also recalls the particular challenges of transitioning from a special education environment in primary to the mainstream secondary system for her son. “Primary was quite cloistered for Sam, so it was hard to find a secondary school that was prepared to accommodate him. He ended up going to a Catholic high school with a more accepting attitude and a more welcoming environment.”

O’Reilly has many friends and acquaintances with similar experiences. “In general, schools struggle with kids who are different. Whether it’s a child who’s neurodivergent, or on the autism spectrum, or with mental health issues like severe anxiety, or oppositional defiant disorder and the behavioural problems that can go along with that. There’s often a lot of lip-service about inclusion in educational settings, but in practice, it’s hard to do well.”