The Insiders

When my son was diagnosed with autism a day after his second birthday, I searched high and low for role models. He was (and still is) non-speaking, and I was keen to find people just like him to guide me, and eventually, my son, as he sought mentors he could relate to. 

My early searches - pre-social media - came up short. Most of what I found were books written by parents or professionals. They offered valuable information on how to juggle the challenges of raising autistic children (mostly systemic) which I still use to this day. But none of them could give first-hand accounts as to what it was like to be autistic and non-speaking.

Then, with the advent of social media, smartphones and DIY websites, I discovered a community of people who were actually autistic. Finally I could access some of the insider info I’d been looking for. Keenly felt insights about ‘masking’ or what sensory overload feels like, and why social interactions can be so hard.

I lapped up their blogs, posts and videos like a hungry hippo but I still needed more. These stories - while rich with knowledge - were still, in some ways, markedly different from that of my son’s. Many from this autistic community were diagnosed late, either well into childhood or not until adulthood. Many were able to speak from a young age and went to mainstream schools. Some were married with kids of their own. 

My son, even well into his teens, still needs considerable support with communication, life skills and personal care. I was desperate to find voices that spoke to his experience as a non-speaking autistic person growing up with high-support needs. 

Then I stumbled across a book called How Can I Talk When My Lips Can’t Move by Tito Rajarshi Mukhopadhyay and my world changed. Here was the voice of a young man my son would find familiar. And what a voice! Poetic, clear, observant. In it I found so many answers - the inner struggles of a person moving through life in a body and mind that sees and feels everything differently. 

In Ido Kedar I found the eloquent pushback of someone who had spent the first half of his life being dismissed and spoken for and over. His Autism Experience Challenge should be on the To Do list of parents, teachers and autism professionals everywhere. 

Through Carly Fleischman’s Youtube talk-show Speechless I learned the importance of boldly going where no non-speaking autistic person has gone before. In fact, my own son recently co-hosted a TV cooking show - his inner chef completely at ease in front of the cameras. 

A new, award-winning film based on Naoki Higashida’s book The Reason I Jump, offers us all rare and captivating insights into the experiences of non-speaking autistic people. A prolific writer, Higashida has written 14 other books.

I recently discovered Tim Chan, a young Australian autistic advocate. His TED Talk brought me to tears for reasons I’m still trying to understand. Perhaps it was when he said being unable to talk is “very frustrating because I often get ignored” or that he wants us to know that he “can think and communicate and dream.” 

Chan wraps up his talk with a message I know my son can relate to: “Above all, I want people to see the unseen beyond the labels and outer packaging to see the inner me.”  

I can’t emphasise enough how important it has been for me to find these young men and women at the vanguard of reframing non-speaking autism. Their voices inform every part of my parenting as I, a neurotypical mum, raise my neurodivergent son. 

Their insights spur me on. I see potential. I have high expectations. I allow endless time and space for the myriad of challenges, especially now that I better understand the toll they are taking on him. 

And crucially, my son now has role models that speak closely to his own experiences. Through their stories, I hope he finds his community and learns that he is not alone. That he does not have to exist silently in the margins of this world. That he too has a voice worthy of being heard. And that I, for one, am listening.