autism awareness 325795649
autism awareness 325795649

When the Plan and the Processing Are Not What You Expected

Picture of Stephanie Phillips
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.

I did not have the children I planned to have. For this, I am profoundly grateful. But it took a while for me to toss the plan I’d written for their lives and embrace the one we were actually living. Autism helped me do that.

When my son received his diagnosis, it was hard not to feel like our world had just closed in on itself. All that I knew about autism was from textbooks, articles, and other material written by neurotypical people, and their reporting was grim at best. Consequently, I wasn’t getting the whole story–and now I see that our world is so much bigger, and more nuanced, than what I read, or how it would have been had life gone according to my plan.

Autism awareness day or month. Paper plane in origami style with autism awareness puzzle ribbon on blue background.

Before I accepted this life and its beauty, though, I had to make a few mistakes. One was trying to, I regret to say, “fix” my son–in other words, make him more neurotypical. We engaged him in behavioural therapy and social groups that were designed to make autistic people appear less autistic. He came home from one such group telling me that, due to a points system in which participants were rewarded for speaking, he felt like they were “being bribed to be nice.” This was one of those moments when I realised that he was already who he was supposed to be–and maybe the world should try to be more like him.

Of course, there always has to be a balance: I want to both prepare him for a world that will not always be accommodating while also trying to make that world more accommodating. I’m still figuring out how to walk that tightrope daily. But the best thing I’ve found as I seek wisdom is to listen to autistic voices and their lived experience. Once I did that, everything changed. I plugged into social media accounts run by neurodivergent people and read their books and articles. I learned about what life was like for them on a daily basis: the large-scale struggles and the victories, and the minutiae that affected their moment-by-moment well-being. I only wish I would’ve done this sooner, as the information I’ve gained from their perspective has changed the way I relate to my son and broadened my understanding of what life is like for him. 

female hand holding a big white puzzle and a stack of books

That understanding doesn’t automatically increase my patience or make our challenges disappear, but it does create empathy and avenues of communication for us that wouldn’t exist otherwise. When he takes a while to answer me, or has trouble getting himself ready for school, I am aware of the neurological processes going on and this informs my response. Indeed, knowing his processing differences allows me to create, with him, strategies that can prevent frustration for both of us–and that help me regulate my own emotions and responses. (I’ll be discussing some of these differences, and strategies, in my next post.) I now know that I can’t expect his brain to work in ways that it just doesn’t, so I try to work within the ways it does.

He has also transformed me into an advocate and given my life a deeper sense of purpose. Since he was six, I’ve been speaking to his class annually about his different brain, and I’ve watched as understanding again breeds empathy, this time among his classmates. Knowing his specific processing differences allows me to teach him these differences so that he understands why he does things differently, as well–and it gives both of us the language and rationale to advocate for the accommodations he needs to succeed. 

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