A List of Things Autistic People Are Tired of Saying

Another day. Another lousy article making the rounds. This one uses autistic as a term to connote cold and emotionless. Woohoo! That stereotype lives on. I would write about it except I already have. And that’s the thing. A lot of these silly concepts are ones I’m tired of addressing. So I’m doing us all a favor. This is a checklist of things we never want to discuss ever again. 

  1. We are emotional. In fact having to explain this makes us angry. 
  2. We are not unempathetic. But telling us repeatedly that we’re unable to feel empathy suggests you might be.
  3. We are perfectly capable of happy lives. 
  4. We do not all have amazing superpowers. Seriously quit using Sherlock Holmes to represent us.
  5. Yes, we have special interests you don’t get. So what? Don’t you? 
  6. We are not incapable of love. The movies lie to you.
  7. We know all about Sheldon Cooper. Keep talking and we’ll quit being nice about him. 
  8. Our skills are just as varied as yours are. Many of us are incapable of success in STEM fields. 
  9. We do not need to just adapt to the outside world. What harm does it do you to let us be us? It’s traumatic to do otherwise. 
  10. Vaccines don’t cause autism. 
  11. Seriously, we are not incapable of emotion.
  12. We can hear everything you say about us. We are literate by and large.
  13. Stop listening to non autistic people as authorities about us. We are trying to explain our lives clearly. You aren’t listening!
  14. Autistic as an insult is an insult to us. Quit. 

This is just a quick list. I’ll gladly add more as the topics are suggested. 

Diary of an Autistic Father: 6 months in

  
6 months ago…

I was tired. I had no sleep the night before. I was cranky. I was frustrated. We kept waiting all day for things to happen and they wouldn’t. Then they finally did. And she was here. 

Today marks 6 months since Lola Faye Shinn entered my life. It’s been a full half a year. What a wild thought. She’s gone from a seed to a rising person. She’s officially here to stay. 

It’s been a rather epic 6 months honestly. I’ve had a lot to learn very fast. Lola keeps me on my toes in that way. Being a dad truly is a learn as you go job. 

I do feel undeniably that I’m stronger as a person for having learned these things. I’ve been forced to grow up to a certain degree and I cherish that. I’m a better man for it. Things that I cared so much about I care less about now. 

But some of my issues are still in place. I’m going to worry about money until I die. I’m going to worry about Amanda until I die. I’ll now worry about Lola the same way. 

What I’ve learned in this time is what I can do to achieve victory. Not much. I can take my pills. I can repeat mantras. But it’s just enough. 

Because being a father is a powerful thing. It forces you to have a new top priority. Your worries are bad but you have a child so she’s first. Lola will always dominate for me no matter what.

She rewards me by being the simplest joy in my life. She’s a pure, innocent soul I can be with. All she does gives me life. She surprises me. She amazes me. 

What amazes me the most is watching her grow. Every day she does more than the day before. She’s livelier. She crawls. Her noises sound like speech. My baby girl is coming alive. And I can’t wait to see it. 

In the weeks to come she has her first Christmas. After that, who knows. But in 6 months I’ll be back here. For now I’ll enjoy being here. 

Thoughts From a Parking Lot in Humble, Texas

It’s hot.

I don’t really know that. I’m just discerning it from the context. It’s very hot though. The heat is drifting off the pavement and I can feel it. I can sense it.

I’m standing in a parking lot in Humble, TX. About a block away was my occupational therapist. This center was a favorite of mine. I used to love being here. I haven’t been here since 1993 but I’m back.

I look around. Almost nothing is the same as it was. Off the top of my head I can see the arcade I used to love is gone. There was a book store next door but it’s long gone. Perhaps the most crushing blow is the movie theater I remember wanting to go to but never reaching. It’s a thrift store now.

There is a dinging in the background. I try to ignore it. It’s a distraction.

Reaching down, I take a long drink of my hard lemonade. It’s smooth, tasty, and cold. It helps me to focus on this moment. I’m trying to enjoy being here after all. Drinking alcohol might not be the ideal way to set your mind for a return to a childhood haunt but it’s what I choose to do.

As I look around, I think about what I’ve seen on this journey. I’ve seen my old house. I’ve seen my old movie theaters of choice. I’ve been to the beach. And I’ve got a few major stops yet to go on this journey.┬áSome of these places are as I remember. Most are nothing like it.

A rattling distracts me in the background. I take another sip and focus.

For some reason, this plot of land bothers me far more than the others. Maybe it’s because it was never truly mine. I had a few years here including one moment so important it opened my book. But I wasn’t really connected to this center. I wanted to be. I’ve dreamt of it. But it was out of my reach.

That’s how my past feels to me now. It was something I had and don’t have anymore. I can recall images of it but it’s not real necessarily. Not without evidence. As I look around, I’m bereft of that evidence. That haunts me.

But then, is what I’m looking at necessarily real? I mean, to my eyes, I’m standing in the middle of Humble, Texas. Everywhere I look, I see that area. I can tell by context clues such as the way people are dressed that it’s July. It’s the middle of the afternoon based on the sun, a partly cloudy afternoon. I’m clearly outdoors.

And not one bit of this is true for where I actually am.

In fact, I’m indoors at 12:15 am on a cloudy, cold December night in Little Rock, Arkansas. I’m not looking at what’s really in front of me. I’m looking at a Google street view capture on my phone which has been strapped into a cheap VR headset.

That’s just it. This isn’t real. It’s based on a real place using real images but it’s not a real experience. In fact it’s not even an accurate experience. The software sent me to the wrong part of the center, sending me past the movie theater, which is still open and doing fine apparently. ┬áThe only part that is indeed real is the delicious, cheap hard lemonade I’m drinking.

This is how memory works. We use images to craft a sense of reality. We trust them to be true but in the end, unless we’re actually there we can’t know they’re accurate and indeed they’re often not. They’re lies we trust. But like the virtual experience I’m having in this moment, they’re still real in their own way. I am indeed going through this.

I take a long last sip and ponder this oddity. I continue to soak up the details. Then I lift my headset up and look around at the real place I’m at.

Diary of an Autistic Father: Weeks 24/25

I had to skip last week’s entry out of sheer fatigue. It’s been a long month but thankfully November is over and I survived it. It was tricky but it was achieved. 

Lola had her first Thanksgiving and it went superbly. She had a few pieces of bread, and by pieces I really mean oversized crumbs. But she’s eating more and more real food. She’s fattening as a result. It’s adorable. 

She’s now fully online. She’s expressive as can be. It’s a joy to see her react to everything and I do mean everything. Her eyes bounce around catching every stimuli. I’m jealous of her awe really. 

There’s a clear sense of a bond these last few weeks too. More than before even. Lola lights up when she sees Amanda. There’s this energy to her face I just love. I wish I could bottle it. 

Lola has been vital to my self care. When I get overwhelmed, I play with her. Rubbing her baby head helps so much. Watching her reminds me that for all the hate, there’s good too. 

I love this job. I can’t wait to see what happens next in it. 

The Invisible Autistic Adult

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. 

Diary of an Autistic Father: Week 23

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. 

Stations of the Journalist: Anatomy of a Mixtape January 2009

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.

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