There is a beautiful boy, with the sort of face that supports stereotypes of stunning autistic children. He is three and a half. He is in the bath, and his mother sits beside the bath with a camera. The camera is not to capture funny pictures of the child laughing in an over-flowing floppy tower of bubbles, it is not there to capture him playing with toys or other joys. It’s just a thing to do, taking these videos and pictures. Because every day is the same, every day is dictated by a three-year-old boy who the mother struggles to understand. She is exhausted, and it is hard to find activities she can do around the child that don’t upset him. She can’t sing or sit in the wrong place – and in a year from now her son will not even let her talk without hitting her in the mouth and biting her arm – but she’s allowed to sit by the bath, with a camera, and so she does.
She decides to attempt to engage him with speech. He is distracted, staring at nothing or something in the distance, but she captures his attention by using his name and asking him to say hello. She gets no response but tries again. Gently encouraging, no pressure, trying to keep things upbeat, because he has a tendency to get upset quickly. He looks at her, he looks thoughtful, eventually he says, “one, two!” The boy can count to ten, but he has trouble using any functional language. She’s been told there are no promises he’ll ever talk in a sentence. But for now, “one, two” is communication, and his voice is something to be encouraged. So while it’s not the expected or wanted answer, it is an answer, and she praises him, “one, two, good boy!”
No more words come from him, but before the video footage cuts out, he turns his eyes to his mother again and does something that he knows she will like and that is expected when in front of a camera: He smiles. Briefly, but he smiles. The mother is happy, she turns the camera off, the footage ends. Her day continues, much as it had all the months before and months after that.
I watched that video today, I found it in my old archives. It feels like someone else’s life. The seven-year-old son I have now can talk in many running sentences. His speech is unusual, but he can speak in more than numbers, and his words make sense to those around him, and those are things to celebrate. He now has good eye-contact, and he smiles naturally and often. It’s like we’re both not who we were. It feels like there is so much “autism” between now and then. Years of therapy, and specialists, and tears and tantrums and violence and fear. And learning, so much learning. From there to here, was the hardest experience in my life, and probably his as well, though I don’t know if he remembers it. There have been times, many times, I wish I could not remember it, but I have to, to recognise how far we’ve come and not just how far we’ve yet to go.
I don’t know if anyone in my life back then knew what our lives were like behind closed doors. I often thought about all the people walking by on the street, just going about their lives, walking past the madness going on in our home without a second thought. When I’d take my own son for walks in his stroller – always the same circuit, always the same direction, over and over – I’d count the houses we passed and try to figure out how many autistic children there must be in each neighbourhood according to the latest 1 in 110 ratio. Wondered what else went unseen, and thinking about how naive I once had been about what life could be like where no one else can see.
Now I’m one of those people just going about my life, but I still read and care about the other children and mothers that like my son and I, are trying to find a way to communicate with each other, to be together, to find and hold on to smiles. For some families, my boy in the bath tub becomes the man in the bath tub, who still answers a “hello” with a “one, two.” For some people reading this, you’re just starting out and wondering which path your life and your child’s life will take. I don’t know, I don’t have your answers. But know this: You are not alone, no matter how alone and misunderstood and scared you feel, you are not the first or only one going through this. When you get the chance, capture the happy moments, make note of every little progress, celebrate even the words that don’t make sense yet because they could be the start of something wonderful beyond words.
“One, two…” may not be a conventional beginning of a sentence or a vocabulary, but it is a good place to start.