“Parents need to focus on healing and empowering themselves. They must shift their beliefs about autism. Once the parent knows who they are, the child will respond.” — Lori Shayew
A note: I wasn’t sure whether to share this story. I want everything I share about autism to be from a perspective of joy, strength, and empowerment. I want my writing to reflect that every facet of my son is a gift; it’s not autism, but the world’s response to it, that brings any fear, inconvenience, or negativity into the equation. But I want to be transparent at this moment, although the topic is painful. If my desire is for the world to heal and become a place that fully embraces my son, then I need to be honest about my own journey of healing. Even more importantly, I need to invite others to heal alongside me. I hope you will receive my reflections below in that spirit.
As I was heading out to do our grocery pick-up last Sunday, my six-year-old asked me if I could pick up a donut for her on the way. We are all about random special treats around here, so I happily said yes.
I wasn’t planning to get one for Koimburi. Keziah can just eat hers while he’s napping, I reasoned — that way he won’t see it, so no harm done. I mean, it’s not like he asked for one, so why spontaneously give him something that’s not exactly the healthiest choice? Makes more sense to just save the $1.75, I thought to myself.
By the time I pulled up to Krispy Kreme, though, I was on the verge of tears. At some point on the drive, the ableism embedded in my logic hit me hard, and my heart felt sick. It does even now, as I type these words, and the tears are returning.
I love my son with everything that I am. I love him so much it hurts. But inside of me, I’ve internalized a value system that calls him less worthy because he doesn’t speak — less worthy of something as simple as the joy of a donut. Would his taste buds be less delighted than his sister’s? Would he be less excited or feel less of the love that a thoughtful surprise conveys? Surely not. But because he couldn’t request it verbally, I almost denied him that simple joy.
I shouldn’t need people to communicate the way I do to realize that their emotions — their joys and pains and desires and everything else — cover the breadth of human experience just like my own. And if I — his mother — could have such a moment of blindness, how can I expect any better from the world around him? This thought left me even more devastated.
It’s about so much more than missing out on a Krispy Kreme — although that is a tragedy in and of itself. It’s about who we decide to honor in their full humanity, and who we relegate to the category of “less than”. It’s about the assumptions we make and their heavy impact. Eden of @the.autisticats on Instagram recently discussed this in the context of stimming (self-stimulatory, repetitive movement/noises). They said, “It’s common to assume that people who move & sound like me automatically can’t write like me. Too many people who move like me are denied the opportunity to learn how to write, because they can’t speak.”
My mind immediately went to an article I read last June entitled “I am a proud, Black, nonspeaking young man with autism. My life matters.” I was floored by the honest, heartfelt reflections from this 14-year-old poet at the height of the Black Lives Matter protests. I also felt immediately ashamed of the assumptions I hadn’t even realized I’d made about how a nonspeaking person would write.
I’m unlearning so much, and the process is painful. But I’m so deeply grateful for the chance to grow.
Reflecting on these early days of our journey (Koimburi was diagnosed last July), it angers me that the whole conversation around a diagnosis — at least how we experienced it — only serves to perpetuate ableism. This will honestly take a whole separate blog post at some point, but I raise it here to lament the missed opportunity that could have saved us — and all parents with similar experiences — so much heartache.
Both society at large and doctors — even kind and gentle ones like the specialist we saw — treat autism like a terminal illness, like “bad news”, a problem requiring intense services to “fix”. Even before the diagnosis, when we’d google possible causes of his sudden speech regression, autism was always the first word to pop up. And despite having a decent amount of exposure to what autism actually is, my heart would sink every time.
To make it really clear: autism is not like a terminal illness. It is not something to grieve, any more than sexism in society makes me grieve being a woman. Do I grieve the impact of discrimination and gender-based violence? Obviously. But I love being a woman; there’s no one else I’d rather be than precisely myself.
And so it is with autism. If I had known then what I know now — that autism is a beautiful, unique, and inextricable part of who my son is — I don’t think my heart would have sunk. In that specialist’s office last July, I wouldn’t have desperately attached my hope to the fact that she had used the word “mild” to describe his autism. My mind wouldn’t have raced with thoughts of all the interventions that would get him as close to “normal” as possible. I could have soaked in the information as the gift that it is: a gift with the power to help me nurture my son’s thriving, exactly as he is. I could have started daydreaming not about “normal,” but extraordinary. Unfortunately, this perspective is not offered to tired and fearful parents when they need it most.
Ableism, like every other -ism, poisons the air around us. We breathe it in without even noticing. I breathed it in without even noticing, until something as random as a donut stopped me in my tracks. If I want my son to grow up in a world that values the unique gifts inside of him, affirms that all forms of communication are valid (hello, assistive devices!), and truly acknowledges the fullness and depth of each person’s humanity, I have to start with me. I have to create that world inside my own home. Will you join me?