Gold Dust Woman

The gas light came on around Somerset.

Pennsylvania is a deceptively large state. Driving from New York to Ohio takes at least 6 and a half hours, if you drive straight through, without stopping for food or rest breaks.

But you have to stop for gas.

The hours spent driving pass by so much more quickly when you drive alone. You don’t have to worry about conversation, or the relative comfort of your passenger. You don’t have to expend mental energy thinking about whether they’re happy, or hungry, or tired, or bored, or regretting the entire experience.

Driving alone, you can play your favorite album on repeat, 20 times, and there’s no one there to beg you to, for the love of God, play anything else. So 5 straight hours of Fleetwood Mac’s “Rumors” later, you remember that you forgot to eat dinner, and possibly lunch, too. But the empty gas tank makes you realize how empty your stomach has been for the last 5 hours.

Stopping at gas stations is alright. They’re comforting, in their general sameness. There’s always a cash register by the door. Always a bathroom (of varying cleanliness). Always drinks in the coolers and snacks on the shelves. Trinkets on display. Lottery tickets and cigarettes behind the counter. Visits follow the same routine, with clearly defined rules and roles. People leave me alone to look at things in peace. I can spend as much time as I want comparing items, going back and forth between the aisles, trying to decide if I want something salty or something sweet or both. They always have the big name, popular brands. No matter where you go, you can find your old standby, your favorite candy bar or box.

Boxed, fruity candies are usually the safer choice. Chocolate that’s been sitting around too long gets that weird white graininess to it. Ruins the whole thing. It’s just unacceptable.

After a quick bathroom break, I dry my hands off on my jeans and head back out into the aisles. The bathroom was equipped with one of those ungodly loud hand dryers. Pass.

I get a bag of my favorite chips. Some beef jerky. Some salted almonds. A box of Mike and Ike’s. A diet soda. A loaf of white bread. Peanut butter and jelly. I really should be buying all this from a grocery store, but I can’t be bothered to stop again somewhere else. Not anytime soon.

I told myself I was going west, but I hadn’t quite worked out all the details. I had set a pin on my map app on a small town in South Dakota, and that’s where I was headed.

And I hated every minute of it. I hated not having a plan. It went against my nature. I hated not knowing exactly where I was going and what I was doing. I hated not knowing where I was going to sleep or shower or rest. I would inevitably have to rest. Even if I limited my social interaction to gas station cashiers and toll road attendants, I’d still hit a point of social exhaustion, eventually.

But I would have to figure all that out later.

The whole point of this trip was to do something new, something completely outside my comfort zone.

She said I was stuck. That I was neither learning from my past or thinking about my future. I was just existing. Doing my best to stand firmly rooted in place while the rest of the world just sailed over my head like air on an airplane wing.

I’m not sure how good I am at metaphors, but hopefully you get what I mean.

I’m not dancing in the breeze or rolling with the punches. I’m a bump on a log, a hermit crab settling into its shell, an oyster pearl refusing to acknowledge the outside world.

But I tried to tell her that I have to be these things. That if I’m not anchored to the shore, I’ll just float away with the tide.

I’m not digging in my heels to be a stubborn jerk. I’m trying to survive, in a world full of loud air dryers, bright fluorescent lights, and other drivers who think I’m weird for wearing high-fidelity earplugs and blue-tinted glasses.

I’m trying to survive in a world that wasn’t designed with people like me in mind.

She hasn’t had the chance to be out that much. She doesn’t know what it’s like out here, not really.

If I want to be able to act like them and blend in with them for at least some of the day, then I need this. This quiet. This routine. This monotonous sameness.

It calms me down when I get overwhelmed, and right now, I’m feeling pretty overwhelmed.

I pay for my stuff, head back into my car, and queue up “Rumors” for the 7th time. I take one last look at my rearview mirror, hit play, and drive.

On this day, July 16th, way back in 2013, I went down to UTSA’s Autism Research Center to assist with a study on reinforcing listening behavior in children with autism. I had to talk to all of the kids, one-on-one, tell them a little about myself, and then immediately afterward, another grad student would ask the kids questions about me (“Who was that?”), to see how much they remembered.

When asked, “what else can you tell me about her?” one of the kids replied, “She was good.”

“Oh?” the grad student asked him. “She was a good person? You could tell?”

“Yes,” he replied.

Ready Player One

Kyle and I have been saving up for a big trip, so we’ve been waiting for a lot of movies to hit the dollar theatre before seeing them. (Except Marvel movies. We budget to see those twice, right after they come out!) So we ended up waiting quite a bit to see “Ready Player One,” even though we both really liked the book.

It’s been a long time since I’ve read the book, which turned out to be a good thing, because the movie is very different. Maybe it would’ve bugged me more if the book had been fresher in my mind, but as it is now, I really liked the movie. I mean, I like Spielberg movies. I like the 80s. And some of my favorite films, like “Who Framed Roger Rabbit?” and “The Lego Movie,” revolve around this crossover or remixing idea that we see in RPO. Sure, maybe there are some people who are upset that the movie isn’t exactly like the book, but really, that’s not quite the point of an adaptation, and honestly, I got to see a fight between the Iron Giant and Mechagodzilla, which was definitely not in the book, so I think your argument is invalid.

(Just kidding, everyone. It’s still totally acceptable to discuss the art of movie adaptations!)

Also, by the way, Lena Waithe is my absolute favorite in everything she’s in. (Have you seen the Thanksgiving episode of “Master of None” that she co-wrote, based on her own experience of coming out to her family? It’s fantastic.)

I did have one minor quibble with the movie, in that they slightly changed one of the best lines from the book, by adding an awkward, stumbling bit about getting a good meal. But since the rest of the quote was delivered with such breathtaking and heartbreaking parlance by the amazing Mark Rylance, I’m willing to let that one slide.

I try not to be one of those people who declares every awkward character they see to be secretly autistic, but I gotta say, when Halliday started opening up to Wade about never feeling at home in the real world and not knowing how to connect with people, in that moment, I related to him so much, I almost cried.

Halliday is right, the world can be a terrifying and painful place, but man. When you do manage to connect with people, to not feel quite so alone for a little while, it can be magical. And honestly, for me, that’s where all this stuff comes into play: the pop culture, the movies, the video games, the books, the comics.

Ask me if I did anything last weekend and my mind draws a blank. Ask me if I’ve read any good books or seen any good movies lately, and my ability to form complete, coherent sentences starts to work a little bit better. Ask me what I think about the character of the Outsider from the “Dishonored” video game series, and if I’m comfortable geeking out in front of you, I will likely tell you his entire life story, how he compares to other deity figures in mythology and pop culture, and all the reasons why I just had to buy a Pop figure of the sarcastic little jerk.

And honestly, I’m beginning to think that that’s how it is for every autistic person. Small talk and polite conversations follow rules that either don’t make sense or don’t really interest us, but if you can get us talking about one of our preferred interests, then all the indifference and anxieties just kind of fade away. (You might find yourself being subjected to an “info dump” of fun facts and obscure knowledge, but you’ll definitely get us talking!)

This is getting to be quite a bit longer than my usual movie reviews, but I think it’s because this all just hit me a little harder than your usual movie.

To wrap things up, I’ll add that I really don’t like the idea of “gatekeeping,” which we briefly see in the movie when Wade meets Art3mis, and she grills him on his knowledge of Halliday. I don’t like for pop culture knowledge to be a competition or a dividing line between people. Stories, like this one, and all the other amazing stories referenced in RPO, aren’t about separating ourselves or keeping people apart. Stories are about connecting, relating to people, finding joy in shared interests, and sharing in all the little details of all the things you love.

And, additionally, RPO is also about using that knowledge, about Wade and Samantha and Aech and all the others using their unique brains to relate to Halliday’s unique brain, in order to find the deeper meaning in this huge thing that he wanted to share with the world. Every person, with a different life experience and a different set of pop culture pieces that they love, has a wholly different perspective on the world. And we share our perspectives with each other through stories. Stories help us to better understand the world, and the people, around us.

And every person has some kind of story worth telling. Everyone. Some people might be a bit better at storytelling than others. But whatever it is that moves you, whatever it is that you’re passionate about, don’t be afraid to share it. You never know who else might be a fan, or who else your story might reach. Your words might be the one thing that makes someone else feel a little less alone, in this big, scary world. So never be ashamed of the geeky things you love. Talk it up.

I’ll wrap this up with the original RPO quote, from Cline’s book, that Halliday imparted to Wade about his time in the OASIS. Because it’s something that I love.

“I created the OASIS because I never felt at home in the real world. I didn’t know how to connect with the people there. I was afraid, for all of my life, right up until I knew it was ending. That was when I realized, as terrifying and painful as reality can be, it’s also the only place where you can find true happiness. Because reality is real.”

Autistic Pride Day | Autistic Self Advocacy Network

So what emotion should Autistic Pride Day bring out in us? How should we celebrate? On days like this, my thoughts turn to the majority of autistic people throughout the world who are not yet able to celebrate autistic community. Some are suffering in special education classrooms and institutions that teach them to hate and fear the way they move, think, feel and are. Others are like the majority of autistic adults – as yet unaware of our community and their own neurology, but struggling with a profound sense of difference that they have never been able to understand or explain to the world.

To me, Autistic Pride Day means solidarity with those parts of our community that have not yet had the opportunity to be proud. It means thinking about how we reach further and farther. Autistic space, community and culture should be available to all of us, early-, late- and un-diagnosed, speaking and non-speaking, with and without intellectual disability, of all races, religions, orientations, disabilities, genders and every other facet of difference. It should be available whatever your politics or views on the controversies that motivate much of our advocacy. It should be your birthright, however you communicate and experience the world….

We are fighting for inclusion in a broader society that is not like us. Opening up that society must always be our goal – the places where we live, work and experience most of our lives will always be amidst the non-autistic majority. But to survive in a world where we are different, we have to be able to find places where we can feel at home with others who understand the toll that takes – and whose company can lift that burden, if only for a time.

via Autistic Pride Day 2015: A Message to the Autistic Community | Autistic Self Advocacy Network

Hello, June!

One of my autistic students very firmly informed me today that I needed to change my calendar from May to June. All of my calendars!

After he helped me put the new numbers up on my whiteboard calendar, he kept reaching for the top of it, which was just out of his reach.

This student’s primary language is Spanish, but he does speak some English. But being autistic, he also sometimes isn’t able to get the right words out, in either language. In these cases, we have to problem-solve together.

I handed him the magnet reading June, in case he wanted to put it up himself. He motioned for me to put it back. I put it back on the whiteboard, centered. He made a gesture toward the left. I scooted the magnet to the left, until it was lined up with the edge of the calendar. He kept pointing to the top of the calendar, and at first, I couldn’t figure out what was missing. I tried handing him my sign that says White, but he wouldn’t take it. He started mumbling something, very softly, that I couldn’t decipher.

Then I remembered what the calendars looked like in the kindergarten classrooms, and it clicked. He wanted to add the year. I wrote it on the board, and he was immediately at ease, and stopped for a moment to admire our work.

It was such a little thing, and such an easy thing, but it was really important to me that I figure out what he was trying to communicate to me, instead of just brushing it aside or telling him to get back to work. It was such a little thing, but it made him so happy. And that makes me happy, too!

Connecting with Autistic Children

“I laughed when he laughed, sang when he sang, and made the same throat noises as him. I did the same when we were outside, not caring what the neighbours might think.

Because in my experience, the key to connecting with autistic children is to communicate how they do.”

– Chris Bonnello, author of Autistic Not Weird and What We Love Most About Life

I love this quote so much.

If you ever see me flapping my hands with, or getting stuck in an echolalia loop with some of my students, this is why!

Our kiddos spend a lot of the school day trying to communicate with, and fit in with, the neurotypical world around them. Lots of eye contact, expectations of “quiet hands,” and being around people who may not realize that you just want them to repeat your favorite scripted phrases back to you!

That’s why I like being a random bit of silliness in their day – especially for the autistic kids out in general education. Let’s talk in nonsensical phrases together! Let’s get stuck in stimming loops for a while! Let’s be silly and strange and do all the odd little things that make you happy, if only for a quick minute or two.

It’s a chance to say to them: I see you. I get you. And I think this part of you that you don’t get to show too often at school is pretty awesome, too. I know they can’t act like this all day, that they need to be able to sit and pay attention and finish their work and learn. But still, I love giving them that excuse to take a mental break, and just let it all out for a few minutes, with no judgment, with someone whose brain lives for the same bits of weirdness that theirs does!

That being said, we do have a lot of awesome teachers and paras at our school who are pretty fantastic with our autistic students, even though they don’t have autism themselves. They work so hard to get inside their students’ heads, so they can support them the best that they can. They’re all pretty great, and I know our autistic students love them, too.

Even though, if you think about it, these same students are probably looking at their neurotypical teachers and classmates and thinking, “You’re all so strange! With all your, socializing and eye contact and quiet hands! I wonder why you do all those weird little things you do.”

Source: Autistic Not Weird – Facebook

Thanks

The outpouring of support for my open letter has been amazing. So many people have read “To the ‘Weird’ Girls Who Don’t Quite Fit In” and have reached out to let me know how much it’s meant to them. How they saw themselves, or their daughters, or another loved one, reflected in the experiences detailed in the text. How it put into words the parts of their lives that they’ve always struggled to express to others. How it made them feel a little less alone and a little more understood.

Being diagnosed with autism was like finding a light in a dark forest. It didn’t end my journey, but it sure helps illuminate the roadblocks I face along the way. I’m still working my way through the woods, so to speak, and writing helps bring some order to the avalanche of thoughts in my head.

And if, along the way, my writing can help someone else who has been struggling, then that is an amazing, awesome bonus.

Special thanks to The Mighty, Autism Speaks, Autistic Not Weird, The Thinking Person’s Guide to Autism, Life Asper Margo, Scary Mommy Special Needs, and everyone else who has shared my article with their followers. You all are the best. I’m so happy that my writing has been able to make such an impact on so many people.

“Here Comes a Thought”

I was not expecting an amazing song about anxiety in this episode of “Steven Universe.” I really, really love this song: “Here Comes a Thought.”

“Take a moment to think of just
Flexibility, love, and trust
Take a moment to think of just
Flexibility, love, and trust

Here comes a thought that might alarm you
What someone said and how it harmed you
Something you did that failed to be charming
Things that you said are suddenly swarming

And, oh, you’re losing sight, you’re losing touch
All these little things seem to matter so much
That they confuse you
That I might lose you

Take a moment, remind yourself
To take a moment and find yourself
Take a moment and ask yourself
If this is how we fall apart
But it’s not, but it’s not, but it’s not, but it’s not, but it’s not
It’s okay, it’s okay, it’s okay, it’s okay, it’s okay
You’ve got nothing, got nothing, got nothing, got nothing to fear
I’m here, I’m here, I’m here

Here comes a thought that might alarm me
What someone said and how it harmed me
Something I did that failed to be charming
Things that I said are suddenly swarming

And, oh, I’m losing sight, I’m losing touch
All these little things seem to matter so much
That they confuse me, that I might lose me

Take a moment, remind yourself
To take a moment and find yourself
Take a moment and ask yourself
If this is how we fall apart
But it’s not, but it’s not, but it’s not, but it’s not, but it’s not
It’s okay, it’s okay, it’s okay, it’s okay, it’s okay
I’ve got nothing, got nothing, got nothing, got nothing to fear
I’m here, I’m here, I’m here

And it was just a thought, just a thought, just a thought, just a thought, just a thought
It’s okay, it’s okay, it’s okay, it’s okay, it’s okay
We can watch, we can watch, we can watch, we can watch them go by
From here, from here, from here

Take a moment to think of just
Flexibility, love, and trust
Take a moment to think of just
Flexibility, love, and trust”

Fitbit-Like Device Shows Promise In Predicting Autism Aggression – Disability Scoop

“The ultimate goal is to develop a system that would transmit an alert and allow time to prepare for episodes… ‘What we’re attempting to do is shift the paradigm of how we approach this… If you know something is coming, it opens up all these options to intervene.'” – Matthew Siegel of the Maine Medical Center Research Institute

This is really interesting. With autism, I feel like there are at least two disadvantages when it comes to unexpected emotions.

Either your emotions are so overwhelming that you can’t think straight, so you definitely can’t express yourself effectively, so you get even more upset and lash out. Or there’s alexithymia, where you basically don’t realize you’re getting anxious or upset or whatever, until it builds up and you explode.

I would be interested in seeing which of these this device would work with. Ideally, both. It would be really great for people with autism to use to self-regulate, as well (a point that is not considered in the article, which solely focuses on how the device would help family members and other caregivers).

I personally would pay good money for a device that tells me when I need to calm down, if it could prevent a more serious meltdown later on.

via Fitbit-Like Device Shows Promise In Predicting Autism Aggression – Disability Scoop

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