Stephanie Phillips
Stephanie Phillips was a practising paediatric dentist in America until seven years
ago, when her husband's work moved their family to Sydney. She is the mother to
two boys, one in high school and one in primary school, one neurodivergent and one
neurotypical. She has co-written a memoir, writes for various websites, and is
currently working on an academic paper in the hope of becoming a linguist and
creating a more inclusive world for people with all types of brains.
Twenty years ago, I was in the middle of a two-year paediatric dental residency in Alabama. Our patient population included not just children, but children with additional needs – what we now call neurodivergent. I had many autistic patients over the years, both during my training and the decade of work that followed; in addition, my major research paper during my studies had been on autism. As such, I considered myself an expert on the subject, but it took having an autistic child to prove me completely wrong.
When my son James was diagnosed at the age of three, I was shell-shocked and in denial. So much has changed since then: our family has moved from America and become Australian citizens. And, thankfully, I am no longer in denial–but it took a while for all that to happen.
I still remember the early days after James was diagnosed before he began speaking at age four. At the time, he communicated by leading us around by the hand. Upon the advice of therapists, I narrated everything I did, to encourage him to speak. We set about getting him enrolled in schools that catered to his needs, and seeking therapies that were recommended. Indeed, we enrolled him in a special preschool class at a local mainstream primary school and filled his (and my) schedule with visits to/from speech, occupational, and behavioural therapists. We did all that we were supposed to do, wanting to give him the best chance at…life? Success? We weren’t even sure, but we wanted to cover all our bases.
In my darker moments, I joined Facebook groups that raved about biomedical “healing” practices. I read about parents who had “cured” their children of autism. We spent hundreds of dollars on an online program meant to ignite James’s ability to speak and we placed him in front of a laptop at mealtimes to watch their videos. In so many ways, our life revolved around his diagnosis, even though I was essentially running from it.
My reasons for denial were as numerous as they were ill-founded. With degrees under my belt and letters after my name, I considered my “expert” status equivalent to firsthand knowledge, and James didn’t remind me of the patients I’d seen in my chair. Since then, I’ve learned the adage “if you’ve met one autistic person, you’ve met one autistic person,” but I hadn’t heard it then–or, if I did, I didn’t listen.
Additionally, I didn’t want him to have a label that followed him around and carried stigma, not realising that I was contributing to that stigma myself. Also? Just plain fear. This diagnosis didn’t fit the narrative I’d constructed for our family, or the one I’d constructed for myself. I wasn’t prepared for it–none of the books I’d read on sleep training had mentioned it–and I thought that by redefining James in my own way, making him into the kid I’d planned to have, I could maintain that original narrative. What I didn’t know was that I was clinging to a story we weren’t meant for, and in so doing would have avoided all the beautiful mystery and nuance that life with James, and autism, has afforded us.
I may have set out to change James, but I’m not overstating it when I say that James’s being autistic has fundamentally changed me as a person–and all that change is for the better.
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