Last week, I did a photo for Autism Shines in which I described my boy and followed with the words –
This is autism.
Well, here’s the thing about that; the image you saw is indeed what I want people to think of when they think of autism. I want them to think of a boy who loves letters and timers and Super Why. I want them to think of his smile. I want the images of that smile to outshine all of the misconceptions in their minds about who autistic children and adults are.
But…when I reverse it, is that what I want to take away? That my boy is autism? I’m not so sure, and here’s why…
I don’t think that having an autistic child – or being autistic – is anything of which one should be ashamed. I am not ashamed of the fact that I have an autistic child; rather, I’m prouder than any mama could be at just how hard my baby works, at how far he’s come, and how much he inspires and delights and enlightens everyone he meets. I hope that he too can feel proud of who he is, if and when he comes to fully understand it and what it all means for him.
Yet I don’t like the thought of autism defining my boy. Jack has autism, but he also has SPD and dysphagia and dyspraxia and hypotonia and expressive/receptive language disorder and a speech sound disorder and – hell – even eczema and chronic vomiting and any number of other diagnoses he’s received (if you want to get technical about it). I’m not sure that a laundry list of diagnoses is what I want people to take away when they meet my boy.
After all, that picture could have easily said “This is SPD” or “This is hypotonia”. Would those diagnoses have any more defined Jack as “This is autism” does? I’d argue no. While my son can identify as an autistic person, it is not what defines him, nor would I want any diagnosis to be what defines him any more so that I want people to only think of me as an American, or a female, or a mother. Rather, I want to be thought of as the unique person that is me, and I imagine that Jack would want the same. I imagine that we all want that.
I want them to see a child who has the most incredible memory of any kid I’ve ever met. I want them to see someone who knows all of his letters, numbers, and colors, even if his language delays might make you think otherwise. I want them to see a child who rubs his red Sleep Sack on his mama’s face because it’s something he loves to do himself and – in his own way – this is his way of being kind and generous.
I want them to see someone who is pure love. Who is more than a diagnosis? Who is utterly and uniquely Jack?