Yesterday I realized that my daughter had been her autistic self long before we even considered asking about diagnosis. At least since 10 months. I took her and my baby to a “play cafe”–one of those places with the coolest toys and a high door price. She loves this place, it offers so many opportunities for crafting projects; setting up long stories with complete, organized sets of animals and plushies; exploring loft spaces and tunnel spaces. She even loves playing with other kids there. She can handle 30 minutes of conversation with multiple!!!! kids when everyone is gathered around the play dough table, looking down at their sculptures instead of each other and clearly talking about the same things.
So I think of this as a place where she thrives, where she is social but can also choose to have long periods to focus on the intense narratives in her own head. And she did thrive. She acted out plays, made art, did play dough and clay, arranged her plushies, even showed off a few gymnastic tricks when that’s what everyone else was doing. But she did burn out on the noisy dance/gym space with music and four other kids trying to talk over each other. She did need to retreat to a (luckily) empty room. She did snap at another girl who moved her plushies a bit too much. And afterward, it had all been so intense that we had one of those hours when every touch, everything I say, makes her scream. I was late on the occupational therapy tricks (brushing, squeezing, etc) to get her out of that state. Which means she refuses when I offer these therapies because she’s already overloaded and the verbal input of me offering is too much. And when everything I say makes her scream, I get so burnt out. Not angry, not sad, but frazzled, brittle. So that another scream will just break my spirit.
She thrived at this place, she got to learn and explore, but it takes a lot out of me. That’s the autism–I have to set things up exactly right, and if I don’t set things up right or if something crucial goes wrong (the wrong color toy, a drawing accidentally ripped) I have to know how to intervene, I have to strategize about sensory overload. And if I don’t do that then she’s screaming, flopping, hitting, refusing all interaction. This is my everyday. Every single day, there’s this pressure to help her succeed in being in the world–not even going out of the house, but just taking care of physical and sensory needs so that other needs–ideas, play, education–can happen. I know she’s only four, of course she’ll learn to help herself more, but now it’s all on me and when I fail her screams hurt.
And it’s lonely–most people can’t tell I’m doing this. If I talk about what I’m doing they see a high functioning kid or maybe a tired kid or a tantruming kid and think that I’m exaggerating, complaining, medicalizing.
I took this picture, one of hundreds where I’ve been standing for a while watching her make something or tell a story and her creativity and focus are so beautiful. One of her doctors called it talking to herself but that’s not it exactly. It’s creative, she is imagining something amazing, something new. These pictures are always looking down and it takes a lot of work to get the one where I can even see her face. These pictures are beautiful and they are different than the pictures most parents take. She is, the pictures are, beautifully autistic, beautifully herself. I know these moments are where her creativity blossoms. Where she comes up with ideas for new video games, stories about all the characters she loves, art, drawings, ideas about nature. This is her thriving.
Then I turned around and took this picture of the baby. Maybe it doesn’t look that different to you but the eyes are open a little more. Because as I moved closer to take the picture, he looked up at me. He looked up at me. And I almost started crying from shock. She never looks up in these moments. I understand that this is because breaking her concentration would cause a crisis for her: it would make her forget the whole story she was telling because the sensory input of looking at me takes over her thoughts. I understand that this concentration of hers, her not looking up, leads her to be able to do amazing things. But it never occurred to me until this moment that most kids would look up when you move closer to take a picture. She never looks up.
Not only that, but the baby never needed me in this noisy, new, high input environment. Of course he needed me for baby things–nursing, a few bumps and bruises, to stop him from climbing the stairs–but he didn’t need me as a solid, steady, quick, therapeutic, guide in a scary place. He just needed a little food and attention, and otherwise he toddled around smiling at all the crazy kids and trying to participate. Grabbing things, throwing things, happy-go-lucky and easy. Hard because he’s far more likely than she ever was to knock over furniture or stick his finger in an outlet. But emotionally easy. No relentless yelling, no meltdown. Maybe a brief tantrum when I forced him to stop eating play dough. But so easy for me emotionally. And this is what made me certain that her autism has been there since nearly the beginning. Even at 10 months, she would have had to hide from all the people. She would have avoided the kids, she would have hid on me, she wouldn’t have looked up for a picture.
When I finally got home after this outing I wanted to cry. I love my girl, I love my baby, I love them both equally but differently. I love her like I’ve been struck by lightning–sharp, out of control, taking over my whole self. I love my baby like we’re on a boat together, working together, enjoying the journey. But I didn’t know the “parenting” I was missing with her until I had him. I had no idea that this is what it’s like for other people–you go to a social space, a kid space, and you don’t need to make 101 accommodations to make it work. You don’t need to facilitate every social interaction, always on the edge of a meltdown that will feel to the other kid like bullying, that will make you and your kid unwelcome in that space. You just go, you sit, you laugh. You tut tut at a couple tantrums, you keep them safe. This is what people were always telling me to do, and how can I explain that it doesn’t work that way with her? I can’t just tut tut when she’s having a meltdown, I can’t sit back while she plays with other kids. I know parenting is always hard, but parenting my seemingly neurotypical baby felt so, so easy on this day. It’s a whole different world of parenting, and I wanted to cry, not from regret or bitterness, but because suddenly this world is unveiled to me and I never really knew it was there. Always there, right on the other side of the room in baby gym, sitting by my side in library story time, across the table at art class. A world nowhere near as intense, not so on edge as the only parenting world I ever knew before.
So now that the baby is a toddler, now that he is scooping his own play dough and walking, now I move in both worlds. The neurotypical and the autism parenting worlds. I carry them both on either side of me, and depending on who I interact with–the parent of a neurotypical kid or the parent of a kid with autism–I will have a whole different conversation. There’s the one where kids play and connect so easily, where they are more creative together and need friends around, where surprises are delightful. There’s the other where every path, every interaction, needs to be mapped out, needs to be a certain color, a certain scripted phrase, and if everything goes right it releases this brilliant, unique creativity. Because even though the autism world is so hard, it is also so powerful, so capable of magic, of the unexpected.
How do I explain these worlds, this difference, without ranking them? It’s lonelier to be a parent on the autistic side. The parents sitting next to you feel far away, their words don’t make sense–at least not until you have a neurotypical kid. But parenting an autistic kid means not only a whole world of struggle, but also a whole world of beauty you couldn’t otherwise imagine. It’s much harder, but it’s also stunning.