A few years ago, I received a piece of paper that would change me and send me on a journey I could never have imagined. Amidst the others words and letters on the page were the letters “A S D”. My boy (then 4) is autistic. Although I had suspected it, and it finally explained almost everything, in reality I still knew next to nothing about it. It didn’t change him, but it would sure change me.
I dived deep to learn everything I possibly could, as quick as I could. Books, articles, videos, studies, friends… “Tell me about autism!” – I wanted to know everything. I had to know. What is it? What is the right way to approach it? What do I do now? What therapies are best? And what do I tell him?
And yet, my extensive reading and research left me with an excessive amount of conflicting answers, and more confused and overwhelmed than when I’d started. One thing it had helped me learn though, is that Autism is not as simple or clearly defined as anyone thinks. There is not one single part of it that comes with a “one size fits all” tag. It is more like a “choose your own adventure” story.
But where would I find my answers? Tell me about autism! I need to know, for my son!
I hadn’t quite “worked out” autism, but I did know my son. All of the things I saw and knew about him, all of the things that led me to wonder about him, all the things that made me beam with pride, all the things that brought tears of desperation for help, and all the things that had led to seeking a diagnosis in the first place. But what would I tell him, about autism?
Time went on, and my boy got better and better at communicating. And I gradually got better at just shutting up and listening/watching. Over time we’ve discussed many topics he brings up (which range from the light hearted to the very deep and philosophical). We’ve talked strengths and struggles. We’ve talked about what an OT does and why we go to see one. How going for a “play with A” (his therapist) felt. How and why others (including his sister) make friends so easily and he just can’t. Why his brain doesn’t stop to let him fall asleep. Why certain rules (especially school rules 😂) are in place and whether they make logical sense or not. Talked about all the different things that can help us (trusted adults, friends, family, therapies, prayer, strategies, medicines, etc).
The more I connected and listened, the more I have seen glimpses of things a little better through his eyes. Every time I placed my feet in his shoes, I saw everything so differently. I learnt to do far more listening than talking. I learnt the best answers to any of his questions are “tell me what you think” and “what is it like for you?”. More often than not, he doesn’t end up needing me to tell him what I think. And more often than not, I learn far more than he does.
“Tell me about autism”, he asked me not so long ago. He had heard the word and knew the word, we’d talked about it sometimes, but this was the first time he had ever spoken it.
“I can’t,” I said truthfully, “but you can tell me about it.”
Though in far more ways than one, he already has.
Bec (Josiah and Gracie’s mum)
