My daughter is on the autism spectrum. She’s high functioning enough that you might not notice right away, but spend enough time with her and it’s hard to miss. The aversion to direct communication. The stumbling articulation. The repetition. The tantrums. It all adds up.
I have rapid-cycling bipolar disorder, compounded by severe generalized anxiety disorder and panic disorder. Most people who know me know this now, but for over a decade, I hid it under oscillating workaholic tendencies, party girl antics, and homebody inclinations. Even with medications and a treatment team and vigilant self-care, the struggle to stay balanced is a constant one. I’d been fighting for everyone else for years, and I’m only now learning how to set boundaries and stand up for myself.
Ava and I have different struggles, but in many ways, we are the same. We struggle to make eye contact under pressure. Our tempers are fast and hot. When things get overwhelming, we retreat to calm ourselves. But most importantly, we understand the world around us through stories.
When Ava was first diagnosed, one of the biggest hurdles we faced was her speech delay. Her mind was moving faster than her ability to communicate. It made it hard to understand how to best meet her needs, but as frustrated as we were, she was even more so. She would often end up distraught, only further obstructing her ability to get through to us.
But then we found a workaround. See, Ava’s memory was second to none when it came to her movies and TV shows. She might not have been able to put her thoughts into her own words, but she could recall scenes that conveyed what she was feeling and recite them verbatim. Over time, I realized that her rambling was not without purpose, and started paying closer attention. It got easier. Not easy, but easier.
When I was first diagnosed, I was frozen, terrified of the sound of my own voice. I felt like my mind couldn’t be trusted, like I was mourning the death of my former self. No one around me could really understand what I was going through, and I couldn’t find the words to explain it, which only made me feel more alone.
But then I retreated into fiction. I read voraciously, I binge watched television, I collected movie plot lines like a connoisseur of terrible cinema. I’d write awful poetry, pen trite short stories, begin novels that would never be completed. But it calmed me and inspired me. These fictional figures, whether they were from my mind or someone else’s, brought me back to my voice and cleared my mind. It got easier. Not easy, but easier.
Stories continue to play an important role in our lives. For Ava, it’s not just a manner of self-soothing, but a means of learning language, geography, science, history, math, and more. For me, it’s not just a form of self-care, but a way to explore the rapid fire ideas searing through my mind’s crossed wires and find organization in the chaos. Stories save us every day of the week, and twice on the bad days.
Not everyone understands our connection to stories. I can’t tell you how often I’m lectured as a result of my leniency with Ava when it comes to iPad and computer play. They’ll cite studies and experts who deride screen time for children without consideration for or knowledge of Ava’s history, ignoring the fact that autism manifests differently for everyone on the spectrum. And when I retreat into reading and writing with a fervor unmatched, the assumption is always that the screws have come loose. After all, exactly how productive or therapeutic can something as trivial as a blog actually be? God forbid I defend my parenting or self-care; then I’ve clearly lost my mind.
But the fact of the matter is that Ava and I are different. We will never be normal. We will always need to find our own way to navigate life. We have to travel our own path, critics be damned, but truth be told, the view ain’t bad from this road. Call us crazy if you like. I wouldn’t trade our crazy for the world.
And our story is only beginning.