Hearing and Saying

I don’t know where this month has gone. My life right now feels like a whirlwind.

Between spending 6 hours a week at a hospital getting saline infusions, making trips out to campus to finalize my fall semester, planning our trip to Kansas City for the Unitarian Universalist General Assembly, preparing for my in-laws’ visit in May, and starting an intense physical therapy protocol, I haven’t had time to breathe.

And breathing is important, or so I’m told.

Writing, too, has taken a set on the back burner. And it’s not like I don’t have ideas, I just can’t get them down before they fly out of my head.

So this isn’t a carefully planned and researched post about a facet of Autism. It’s not even one of my typical lists, with discussions and comparisons. No, this is a collection of the one thing that’s been sticking in my head these days: funny and/or ridiculous things I’ve said or heard recently.

“He sounded disappointed that the cat didn’t fit down the toilet?”

“Are you prepared to make your evil laugh?”

“Just because she didn’t pet you doesn’t mean you can hiss at her.”

“The bush is buzzing again. Must be April.”

“This sign is old. Irish people people objected to being compared to potatoes.”

“I can’t tolerate it orally”

“Buttons makes everything a bit more formal.”

“I need you to come touch Einstein’s face. NOW.”

“What, have the hipsters ruined hats for everyone now?”

“But if we end up there, can I ride a camel?”

So here we are. It’s funny the things that come out of our mouths somethings. I’m not an eavesdropper, but I definitely feel like I hear more of other peoples’ conversations than your average neurotypical. I like to chalk that up to hyper-hearing and a natural curiosity.

I hope that your week is filled with amusing conversations!

Three Wishes

I’m walking along the beach, looking for sea glass, and doing my best to ignore the grains of sand that have worked their way into my shoes. I see something in the distance, glinting in the sunlight, and I dash forward, hoping to find more glass for my collection. As I reach for my treasure, I realize that it is a fully intact bottle, not the rough and tumble fragments I’ve been searching for. Bottle in hand, I try to clean the sand off the bottle, when it disappears with a POOF.

In front of me stands what I can only describe as a Man/Moose hybrid, and when I manage to drag my eyes away from his massive antlers, I see him gazing at me, expectantly.

“Well, what will it be?”

I have no idea what he’s talking about. I figure if I don’t respond, he’ll explain himself.

“I don’t have all day here, you know.”

I’ve lost my words. It figures that a fantastically magical being would render me non-verbal. I cross my fingers that he understands ASL, and I sign DON’T-UNDERSTAND.

With a great huff and shake of his head, he says “Your wishes. You have three. Use them wisely. ” Under his breath he adds “Ugh, mortals.”

Thanks to a childhood Special Interest in mythology, I know that genies are rarely benevolent. These tricksters never have your best interest in mind, and take joy in warping wishes. I know I will have to be careful.

One thing that I never understood about wishers in stories was why they never used their first wish to make sure their remaining one were granted accurately. I tell this to the Moose Man, and his eyebrows furrow.

“You would waste a wish like that? I know you, mortal, and you have too many problems to be wishing for precision. In fact, I’ll make you a deal. You use me to wish away the demons that plague you, I give you my word that I’ll stick to the spirit of the wishes.”

Demons? Can those antlers let him see something that I can’t? Am I infested? I feel itchy just thinking about it.

Before I make any decisions, I definitely need to know what he means by “demons.” Again I sign DON’T-UNDERSTAND.

“Your brain, it is different from those of other humans. It causes you pain from your senses, confusion from social interactions, and despair from living a world that is not meant for you. I can use your wishes to take all of that away- why would you wish for anything else?”

I am stunned. Does he not realize that by taking away the bad, he would take away the good as well? Yes, I experience sensory hell, but there is sensory heaven in my world tool. The joy from my special interests outweighs the struggles I have with things like socialization and executive dysfunction. And mostly importantly, changing how my brain works would change who I am. Who would wish for that?

I have to think carefully about my wishes. They need to be so clear that he can’t warp them, and they have to benefit not only me, but everyone in my community.

He paces and glares while I take my time, but eventually, I am happy with my choices. I turn back to him and say:

“I like who I am, and would never risk changing that. Here are my wishes, and I hope they reflect that.”

  1. I wish to be included in my own Advocacy. I know myself best. I know my needs and struggles, and I need to be considered an expert in the field of myself. We will never make progress unless we give precedence to the voices of personal experience.
  2. I wish for Accessibility. Many of the problems that I experience could be easily resolved by people willing to meet me in the middle. All people with disabilities would be able to accomplish more if more of an effort were made to see weaknesses and then find solutions to balance them out. It’s possible, and more of an effort needs to be made.
  3. Lastly, I wish for Acceptance. Everyone deserves to be respected for who they are, and no matter what their abilities are. I don’t want people to make pity-eyes at me, and I don’t want people to think that the way my brain works is a tragedy. I am who I am.

He looks and me solemnly, and after a few moments replies “As you wish.”

All around me, lights swirl around me, and when I’m practically surrounded, I hear another great POOF and

I wake up in my bed. Half asleep and bleary eyed, I try to remember the Moose Man, but all I can recall is his ignorance, and his massive antlers.

90% Shameless Self Promotion

I absolutely understand if you don’t click on this. Who wants to hear someone talk about themselves day in and day out? Except maybe bloggers…

Anyway, it’s April, which is Autism Acceptance Month, and I’ve been having some fun. My Etsy store is empty 90% of the time, but as April draws closer, I start feeling the pull to get creative. And I figure, I’ve got all this stuff that I think people might enjoy, so why not?

I’ll keeping the pitch simple here. My shop is open. Everything is under $5. 10% of anything I make goes to the Autistic Self Advocacy Network. Free shipping to the continental US, and 15% off if you spend more than $5.

So. If you have any need for cute stickers, pins, or worry stones, I’m your person.

Thank you for reading this far- I’m just going to leave you with a few pictures…

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Autism is not a tragedy

special interest

autisticat body

 

Autism Acceptance Education Acrostic

It’s April again, and here we are kicking off Autism Acceptance Month! Calling it Acceptance Month instead of Awareness month may confuse people who are outside of the Neurodivergent community, but I think that this provides a great opportunity for education.

So, since I never miss a chance to make poetry here is an Acrostic poem with education in mind.

Autism Acceptance Education Acrostic

Autism is a neurological variation in functioning, not a illness, a disease, or a tragedy.

Curing Autism is not the goal of Autistic people. We want Accessibility and Acceptance.

Communities can promote inclusivity by listening to Autistic people about their needs.

Eugenics works by wiping out genes, like ones that cause Autism. No more Autistics.

Person first language is preferred by many groups. Autistics prefer Identity First.

The Neurodiversity Movement includes neurotypes like Tourette Syndrome and ADHD.

Accessibility is necessary for Neurodivergent people to succeed in their communities.

Nothing About Us Without Us is a Disability Rights slogan that promotes self advocacy.

Communication doesn’t just mean speaking, there are many ways people can connect.

Empathy may be a struggle for some Autistic folks, but that doesn’t mean they don’t care.

 

Notes:

  • Person First Language aka A person with Autism, instead of an Autistic Person, is generally recommended by Disability Advocacy groups. Most Autistics reject it because we believe that Autism is an intrinsic part of who we are. The Deaf Community also for the most part rejects Person First Language.
  • Other Autistic Cousins include Dyslexia, Dyscalculia, and Epilepsy.
  • Accessibility can include assistive devices (noise canceling headphones, stim toys, etc.), support people/animals, things like using email instead of phones, and having family/friends/coworkers learn about Autism.
  • The Autism Rights Movement borrowed “Nothing About Us Without Us” from Disability Rights, and have used the goal of Self Advocacy to found organizations like the Autism Self Advocacy Network (ASAN).
  • Other ways to communicate include Sign Language and Augmentative and Alternative Communication (AAC) Devices. Also, communication styles are as unique as the people who use them, so use what makes the most sense.

*please note, that I only speak for myself. Every Neurodivergent person has differing opinions, and when in doubt, trust the individual.

Let’s Be Practical

It all started with a Buzzfeed quiz: Eat Your Way Through Europe and We’ll Reveal Your Dream City! I got Barcelona, and while I was reading through the blurb describing warm oceans and sea breezes I thought to myself “you know, I’d love to see Barcelona some day.”

But let’s be practical, I probably won’t.

I think the most heartbreaking part of being diagnosed as an adult is that I often still think that I am neurotypical. And since I’ve spent 28 years being bombarded by the idea that I can do anything I want, I see no reason why I can’t. As long as I Try hard enough.

I think we all know though, that autism doesn’t work like that. Now I’m not implying that we shouldn’t try! Yoda said “do or do not, there is no try”, and I disagree with the little green bastard, because I think “try” is not a placeholder for “do”, I think trying is an action in its own right.

And because of this, I subscribe to the school of Realistic Trying. To me, this means that I’m never going to stop pushing forward and doing things, but I’m going to be realistic about how I go about it. Let’s take Barcelona. Barcelona is in Europe. In Spain. I live in St. Louis, which is 4644 miles away, smack dab in the center of the United States. And thanks to the myth of Trying Hard, a large part of my brain still thinks that travelling that far is doable.

Let’s make a quick list of barriers to travel:

  1. I have a routine, and if it is not followed, it will eventually lead to a meltdown.
  2. I can’t deal with unpredictability, and travelling to a new continent is full of them.
  3. I am a picky eater, and my precariously balanced diet depends on me being able to eat safe foods.
  4. I get overwhelmed by people. I’m pretty sure a transatlantic flight would be the end of me.
  5. Sensory Overload. Enough said.

Yet my brain tells me that I Can Do Anything, and my common sense can’t shut it up. My brain tells me to Follow My Dreams. Common sense suggests maybe finding a more realistic dream, but this is quickly shut down. I Can Do Anything, my brain proclaims.

I can’t do anything.

I can do some things, and that list is always growing. This is what I need to focus on, because I logically know that I can’t just push through a meltdown with the power of Trying. What I can do, and what I need to do, is to get to know myself better. Find out where I can make little adjustments without compromising my mental health.

So on days when I try something new, I keep my schedule as close to normal as possible, even if I’m not at home. I talk myself through things that might be unpredictable, so I can be ready for them. I pack myself just-in-case food, and I know where the bathrooms are- just in case I need a break. And for the sensory worries? I never leave home without ear plugs, stim toys, and distractions.

I wish my brain thought those little adjustments were a success, but I think we all know by now that that it doesn’t. Because my dreams didn’t come true, it tells me, I must not have tried hard enough. Who cares about small victories? I’m not lying on a beach* in Barcelona, so I’ve failed.

Let’s all give a rousing Shut Up to my brain, because yeah, maybe I haven’t made it to Europe yet. Maybe I never will. But hey, let’s be realistic, I’ve got Nashville, and Chicago, and Kansas City, all a hop, skip, and a jump away, so let the road trips begin!

*I would never do this anyway. Wet sand is sensory hell for me.

 

 

 

4 Feelings That Suck

Sometimes you just feel like crap. Such is the human experience. I think that the goal of life should be making sure that good things are the majority, and the crappy things are the minority. But even if your life is mostly good, even if your feelings are largely positive- some of them still suck.

This post isn’t about changing these feeling. That’s a totally different post. This is just acknowledging that feeling like this are real, they exist, and that they are universal.

Plus, I find screaming into the void to be very therapeutic sometimes.

1. Getting lost: Realizing that you’re lost immediately turns you back into a 5 year old. All of a sudden, everything around you is 10 times taller and you’ve shrunk like Alice after she drank that potion. I get lost a lot. I’m not ashamed to admit it. Between having a terrible internal compass and stopping every 5 feet to touch something shiny, I’m a pain to shop with- just ask my wife. She always finds me eventually, but not before the panic that I’ll never see her, my home, or anything familiar, ever again sets in.

Honorable Mention for being lost in a more existential way as well. That also sucks.

2. Losing a special interest- I don’t know about you, but I’ve had special interests for as long as I can remember. And with the exception of Star Wars, none of them have lasted. And sometimes that’s ok. When a special interest gently fades to the back of your brain, it’s like it’s lived a good life, and now it’s time for it to go. Especially if it’s making way for something new. But there are other times. Times when you realize that something you love is being pulled away from you, and while you desperately try to hold on, all you can do is watch as it slips away. For me, I spend so much time with my special interest, that losing them is like losing a constant companion.

Honorable Mention for accidently gaining a special interest that you didn’t want. That also sucks.

3. Everyone understanding something but you: Smile and nod, just smile and nod. Because in situations where for whatever reason everyone knows what to do except you, you’ve got to fake it. How do the public collectively know what to do in these situations anyway? I find being in social situations like this comparable to everyone in the room doing a dance that you don’t know- usually I compare it to the Macarena- and they’re all having too much fun dancing to explain to you what’s going on. So instead you mentally beating yourself up for being too dumb to do something that everyone else can easily do, you tell yourself over and over that you don’t belong, and you’ll never to try again, because this feeling isn’t worth it.

Honorable Mention for spelling something wrong for years. That also sucks.

4. Being Misunderstood: Communication is hard for everyone, but I know that since I sometimes communicate in a somewhat non-standard way, I seem to run into misunderstandings more often than most. There’s nothing worse than getting halfway through an interaction, and then realizing that you’re having two different conversations, or realizing that you’re not being understood at all. Besides being really frustrating, it’s often guilt inducing, knowing that you’re bringing your best communication game, and it’s still not working. It’s like you’re grabbing at a possibility to connect, and you’re just missing it.

Honorable Mention for having your tone of voice be misinterpreted. That also sucks.

So this one was a bit of a…downer. Sorry.

I hope you know that I’m not trying to imply that these feeling are always present, or that wallowing or over-analyzing is the way to go.

I know that I’ve found it therapeutically useful to recognize when I feel like this, and acknowledge it, so it can pass. I also know that when I can share them with people who might have similar experiences, it can turn feels that suck into feelings of connection.

So go! Watch your favorite show, hang out with your favorite people, pet a puppy! Hell, pet 10 puppies.

Take good care of yourselves.

A Person is a Puzzle

So, thanks to certain organizations who shall not be named, I have a visceral reaction to puzzle pieces. I hate everything that that’re supposed to represent, and even more, I hate that they’re everywhere. On t-shirts and buttons and bumper stickers, placed there by people who think that by having a “I love me _______ with autism!” magnet that they’re somehow helping. Some of them are. Most of them aren’t.

Here are a few explanations of what people think the puzzle piece represents:

  • The mystery and complexity of autism
  • “(To) show that autism caused suffering and that children with the disorder would not “fit in” to society.”
  • “The puzzle piece meant they did not fit in.”
  • “(It) symbolizes hope for defeating the disorder.”

None of those things sound good to me. Acting as though autistic people are a “mystery” seems to me like a cop out. It sounds to me like there’s no point in trying to understand us, because we’re too complex. And while I think most of us have suffered at one time or another, suffering is definitely not something that defines me. I’d say that when I don’t “fit in”, it is often because people aren’t willing to get to know me. And I don’t want to defeat autism. It’s a large part of who I am, and I’d rather understand it and accept it into my life than get rid of it.

It think it’s a shame that the puzzle has come to this. I love puzzles, and think that the idea of people being made up of pieces is really accurate. Which leads us to….

I’m a Unitarian Universalist, and one thing about us is that we draw from a lot of different sources, especially during services. This morning, a piece was read called “A Person is a Puzzle”, and I immediately knew that it was something that I wanted to talk about. This is the sort of puzzle piece imagery that I want.

We are all puzzles. We are all whole. We are all enough.

 

A Person is a Puzzle

By Mark Mosher DeWolfe

A person is a puzzle. Sometimes from the inside, it feels like some pieces are missing.

Perhaps one we love is no longer with us. Perhaps one talent we desire eludes us. Perhaps a moment that required grace found us clumsy. Sometimes, from the inside, it feels like some pieces are missing.

A person is a puzzle. We are puzzles not only to ourselves but to each other.

A puzzle is a mystery we seek to solve—and the mystery is that we are whole even with our missing pieces. Our missing pieces are empty spaces we might long to fill, empty spaces that make us who we are. The mystery is that we are only what we are—and that what we are is enough.