If you believe the media, I do not exist.
My story is not one you see told in the movies. There aren’t books written about me. TV ignores me unless I’m solving crimes. There aren’t feature stories written about me. Even my iPhone follows the word autistic with terms only relating to children.
I am an autistic adult and I am the great phantom of the discussion about autism.
Autistic adults are a subject that seems bafflingly taboo in the media. Almost without fail every depiction of us is as children. If we do exist, it’s as an oddity or a joke. There’s never one of us that just happens to be autistic. We’re unreal.
There are a lot of reasons for this. It’s hard to ignore that autistic adults are kind of a new phenomenon. The media has only known us as severe cases after all. The generation I belong to is just really solidifying. It’s not that surprising the media can’t adjust to us.
There’s also the fact that if we’re living our lives well, we’re not that different from others. We have our special experiences but we’re not nearly as dramatic as our lives are as children. We’re just living lives. Can’t blame the media for disinterest.
But there’s another troubling reason I think we’re ignored. The sad truth is adulthood is linked with agency. We don’t have agency in our stories. Our stories must be filtered through others eyes. Who better than our parents to provide that? Hence we get waves of stories focused on our childhood. We aren’t allowed to tell our stories.
This has to change. It has to change because the autistic children need to know there is a future. They need to know they can have a perfectly happy adult life. This gives them a sense of hope.
The only way to change it is to tell our stories. If we are speaking, we will be heard. We won’t be invisible then.
It hasn’t escaped my notice that working on this feature serves much the same function as caring for Lola does. For a small amount of time, I drop my worries regarding the outside world and focus on her. I maybe don’t get much done but I do something.
It’s been a quiet week thankfully. Lola had a small virus but healed quickly. Beyond growing more hair, she’s continued to be the same cute baby I’ve seen so far. She simply gets bigger and bigger each day. She’s more alive hourly.
Our bond is growing quite strong, which is fascinating as it’s purely nonverbal. I talk to her but she doesn’t respond. I have to read cues like her face to know how she feels. I especially have to rely on facial cues because frankly she’s not that talkative and when she is it’s atonal.
But I do read those cues. I look at her little face and see confusion, interest, fear, and joy. Lola is a very expressive baby. Looking at her teaches me so very much. She’s living the most simple life and it’s a release to go into that mindset for a moment.
As a result, we’re bonding. I know she likes being with me. She responds to my voice. She smiles when I smile at her. She grips my finger. She makes noises at me. And I smile when I look at her because I feel such feeling for her.
Lola serves as a center for me as I continue to work through my anxieties which have been resurgent. I feel like it’s impossible for me to find a new normal right now. I’ve written about this before and I doubt I’m done.
In fact, writing has been hard this week. I’ve started work on the new book but it’ll be slow going. I’m really not in a headspace to write more than reviews. That’s ok.
But I have my centers. Lola is here. I can always count on having to feed her. I can count on playing with her. Things in this area are ok. That’s enough for now.
This is a special entry for me. This entry actually outlines an event I considered, and even had in my book until a few drafts from the end, using as the finale. I’m working with a bit of an experimental format too. Once more I’m looking at a mix CD from my car but this time I’m interlacing the events of the drive as I go. It’s a test. I’ll see how it goes.
Last week was a long week on planet Earth.
Lola has started to develop in ways that floor me. She’s gaining hair on her head, slowly covering what had been a peach orb. She’s becoming a subtly dark haired girl though it’s still a guess as to what her hair color will be. The point is, she’s got a velvet dusting where once was pure skin. As I stroke her head, I’m in awe.
She’s moving more and more too. She rolls and scoots on her mats. She’s not yet crawling but she is in motion. It’s a blast to watch her at play. She also notices toys more and more. Rattles particularly grab her.
Then there’s the issue of sitting up. Lola Faye sits up more and more each day under her own power. She’s even sitting more in her walker. Her feet don’t touch the ground but she sits up!
As I watch her, I’m in awe of her. She’s gone from a blip on an ultrasound to a person. She’s alert. She’s alive.
And I need this.
This wasn’t an easy week. As an autistic, I worry about the people I love. Right now a good many of them are hurting. And I’m continuing to try and self care but my natural empathy means I worry about them even as I’m not there like I should be.
I had a series of panic attacks this week for that reason. I internalized their panic so severely it became my own. I’m slowly detoxing from it but I’m not unaware of it. I want those I love to feel safe.
So what I’m doing more than anything is focusing on Lola. The world is beyond my control. She’s not. My daughter defines that which I have some power over. I am her daddy after all. I can’t fix my friends’ world but I can fix Lola’s.
I don’t have any answers. I don’t know what’s coming. That frustrates me.
But I have Lola. I love her. I want to be there for her. She’s my beacon.
This is more or less intended as an official statement to explain my absence from social media. My plan is to be offline through the weekend though it may be longer. I don’t want anyone to worry but this is a MUST for me. I need to take a break.
Why? Pretty easy. The election has drained me. It drained me before we got this outcome. It was pure ugliness. I was having serious issues before.
Then the outcome.
I’m not in a place to handle this as the outcome right now to be blunt. I’m not. I try to be but I’m not. I’ve had a few panic episodes today. I’m well aware I’m not the only one. I’m not able to process the overwhelming darkness and hate I’m seeing from everyone. So I’m leaving for a bit.
What will I do instead? I’ll care for myself. I’m going to binge things I love. I’ve got Comics For Rent movies to see. I’m going to read. I’m going to start the second book. I’m going to do things I love as not to let the dark win.
I will be off Facebook and Twitter, having deleted both apps. However I will be reachable on Facebook Messenger and I will respond to comments here. I’ll also have two podcasts coming.
But for now, I’m going away. I’ll see you hopefully in the light.
It occurs to me today that Lola Faye will never know a world where the Chicago Cubs hadn’t won at least one World Series in her lifetime. The years I spent as a fan watching them stink up the bottom of the division eternally fated to lose won’t register to her. The first World Series in her life was won by the Cubs.
I think about this minor fact because it underlines for me how much she won’t know that I’ve grown up with as hard fact. Her experience will be epically different from mine. She will live in a world that bears almost no resemblance to the world I know from my childhood.
For example, the idea of a dollar theater won’t be a thing to her. The closest she’s come is when I drove her over to the now ruins of the Tandy 10 which closed in 2014. That was a place I spent hours upon hours of my life in and it’s ashes now. I don’t even want to touch the idea movie theaters themselves might go.
Lola won’t know shopping like I have. Bookstores are dying. Conventional chain stores too. Aside from direct consumables, it’s all going online. She won’t have the fun I had. Malls will be a thing of the past for her.
She won’t know a world without the internet which first came to prominence twenty years before she was born. As a result, she’ll live in technology. I can’t fathom how it’ll be in 10 years for her. School will be different as a result.
And then there’s the world. Weather is changing. Politics are changing. What is she walking into? I truly don’t know and it scares me so.
But there are things that won’t be different. She’ll have a family. She’ll have friends. She’ll have her journey. Life will in many ways be the same.
She will be loved. That I know is eternal.