Lock And Key
Friday is the Autistic Day of Mourning, a day to honor the autistic people who have lost their lives to the desperate or careless actions of parents and guardians, or to the crushing weight of the sensory world that seems inescapable by any other means but death.
As long as myths and misinformation are spread about what life on the autism spectrum is like, there will continue to be caretakers who feel that autistics are less than human, and autistics who feel that every door in the world is shut and locked against them. This is my story of those doors and locks, and the keys that turn up in the most unexpected of places.
I wrote this for an event around Mothers’ Day, called Listen To Your Mother. (It may have been too weird for them.) But I really wanted to share these words I’ve crafted, and the occasion to commemorate those who never found their keys seemed fitting. I hope it unlocks something for you, too.
Parenthood is all doors and windows, keys and locks. Change blows them open and slams them shut. Heat and grief swell the frames so they stick stubbornly. Time and anger jam the pins and squeak the hinges. Then suddenly, a word, a fall, a breakthrough, and we stumble over the threshold.
My son’s autism diagnosis was the key to a lock I didn’t even know existed. Kindergarten was rough, rougher than it needed to be. Connor talked as fast as he thought, ideas rushing out so fast his little mouth garbled and stammered over the vocabulary of a high schooler. He knew the names and origins of every superhero and Star Wars character, but related them with so much detail, kids his age gave up and walked away. He struggled to function in the constant noise and color of the classroom, where he could never settle and instead slingshotted among activities and classmates.
The other kindergartners didn’t understand, and responded with cruelty beyond comprehension. Five-year-olds on the bus home at half-day told him they would beat him like a piñata until he broke open. They said they would come into his room and set his bed on fire. They hit him in the face with ice balls until he needed stitches. And I cried as I scrubbed the blood out of his little winter coat, as I held him in the night after dreams that woke him screaming. As I filed the papers to transfer him to somewhere safer.
We got called to a meeting within the first month at his new school. “We’ve noticed some things we’d like to talk to you about,” the counselor said. We feared a repeat of the last school’s message: “Your son is a discipline problem. Fix that.” But in that room with his teacher and a staff we barely knew, they slid a list across the table to us that told the story of our son.
My husband and I laughed. Out loud. It startled the school folks to see parents erupt in gales of hilarity and recognition at an inventory of symptoms. But there it was, clear as day on that paper: every strange, wonderful, frustrating, inexplicable thing that our son did. “It’s okay,” we tried to reassure them. “This is the Book of Connor, the pattern we couldn’t figure out. Until now, we thought it was crap parenting.”
It has a name, they told us: Asperger’s Syndrome. “How wonderful,” we replied. “If it has a name, it’s a language we can learn.” We shook their hands, agreed to meet again soon to talk about how to help him. We thanked them, over and over. “Thank you for giving us the key to unlock our son.” I went to the library, checked out armloads of books, and built a fortress around myself, so I could read us all out of the dark.
But the key we had fit another lock, too. It fit a lock in me, a lock I didn’t know I had. His patterns were my patterns, or had been as a child before I learned to hide or work around them. I saw the world in stories too, and had visions clearer than eyesight from the books where I went to hide. I fixated on things without even trying or wanting to. And when it was too much, only dark and quiet and heavy blankets and the rushing, patternless sound of a fan could steady me on the tightrope again.
His lock, my lock, they’re the same. My son is autistic. I am autistic. We are both autistic together. We share this key, and we’re unlocking doors I never dreamed I would pass down to my child.
Grownups say they wish they knew then what they know now. They have no idea.
My son’s lock is my lock. His key is my key. Every door it opens, it opens for him and me. And I walk that terrible, glorious road of discovery with him again like it’s the first time for us both.
This is almost a mirror of what happened to me.
The biggest difference for me is that hiding my autism was a necessity on many levels.
My sister was born with some physical problems (pesticide DDT related) that were worse than mine. My mom is bipolar and quite literally could not mentally handle a kid with a mental tangent and a kid with a physical handicap both. She went completely nuts once. As a kid, I didn’t want to be ridiculed, but I also didn’t want to put my mom under more stress, because the stress and discomfort cycled itself.
I completely understand the feeling that being open with your true self is a complication that your situation just can’t bear. I wonder if my Asperger’s would’ve been caught at an early age if my mom wasn’t dealing with an alcoholic, sometimes abusive husband. I grew up so fast, and learned to hide my own needs so I could take better care of her and my sibs. It might’ve been different, had things been on a more even keel.
“ Until now, we thought it was crap parenting.”
“If it has a name, it’s a language we can learn.”
These are the reasons why I desperately sought an ADHD diagnosis for my eldest son, despite all the remarks that I was just trying to label him, and the why would I say that about my own son’s? He had his own set of directions that I needed to learn, and that the school staff needed to learn, too. That key enabled us to empower everyone with what they needed to raise and teach him.
This is beautiful, Jess. The Mother’s Day people are crazy to have left it out.
Incredibly powerful post. Beautiful writing.
All over again, I’m wanting to find somewhere for me to go for testing. The supposedly great dr I went to a couple of years ago told me I wasn’t “weird” enough to be Aspie, I was just a geek. And while it’s possible he could be right, I see so many of my struggles are the same struggles.
Your paragraph about the key fitting another lock – seeing the world in stories, visions from the books so clear, hiding beneath blankets and fan … rings so true for me.
Thank you so much for sharing this. It’s a beautiful and important piece of writing.
Beautifully written. Thank you for sharing this. Hope that this post will open many locks, and create stronger bonds between the kids and their parents, and allows a new beginning as well.
beautiful, so blessed by this today!!
thank you. xo
This is beautifully written. I, too, have been on a journey of self discovery and self identification since my son’s high functioning autism diagnosis! Thanks for having the bravery and eloquence to share it with the world!
Thank you so much for this. This is mine and my son’s story too, his key was my key and though we are both different in many ways, our autism brings us together with such understanding I could have never expected with my child. I only wish I could be “out” like he is, maybe one day.