Autistic People Literally Explain This – Are you Listening?

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Sometimes the hardest advice is actually the easiest.

One class loomed large in my college course sequence: EN 360 – Advanced English Grammar & Composition. People spoke of it in somber tones, shuddering, recoiling at the mention. Even English majors failed it or barely passed it.

The survivors painted graphic pictures of the coursework: labyrinthine diagramming extremes, freewriting exercises that would cripple your hand, and a gargantuan “annotated bibliography” littered with technical traps and bedeviled details that would papercut the work into failing.

After enough conversations, brave attempts at small talk, researching ahead of time, a colleague gave me the absolute best advice on how to pass and ace the course:

“Just do it exactly how Dr. Chapman shows you to do it.”

This guy had to be kidding. It couldn’t be that easy. It just couldn’t. 

Next semester, for the course, I took Dr. Chapman (as recommended), the school’s resident grammatical and compositional authority, a genteel Southern gentleman, rigid-but-kind, proper-yet-warm.

My first assignment drafts? Trash. He wasn’t pleased. Then again, that seemed to be the consensus for all of us.

But as he started to walk us through how we could revise our drafts, I heard that advice clicking into place. Dr. Chapman walked through the assignment, and wrote out the very words, sentences he was hoping to see in our next drafts.

This. This was it. 

He wasn’t making a recommendation. 

He was showing exactly how to do it. How to rewrite the assignment. The words, the sentences, the sequences.

I wrote them down, word for word. It clicked.

And where the next drafts also suffered for many, they did not suffer for everyone. Because some of us were in on the secret. “He’s telling you exactly how to do it.”

So what does this have to do with The Life Autistic?

We’re telling you exactly what autism is all about.

We’re explaining the why, explaining how we feel, explaining our triggers, elaborating on the challenges of our autistic experience.

If “Understanding and Supporting Autistic People” were a course, you could ace it just by literally listening to autistic people telling you about autism. The more people try to overcomplicate it, to render judgment, to debate the experience, the harder it gets.

But better understanding autism through autistic voice is that easyIt would make your life easy! It would do wonders for us!

Not everyone listens. Not everyone seems convinced that our first-hand narratives are enough to overcome bias or pre-entrenched suppositions or other personal obstacles.

Sometimes it’s easier to believe less than the best, or that something you don’t understand is just “bad,” or that we’re just trying to excuse our faults away. Or that experts about us know more about us and don’t care or see the need to value our voice.

Those are the people who failed courses like Advanced Grammar.

Because it can’t be “that easy” or “that obvious.”

But it is.

 

 

 

Birthday Parties in The Life Autistic – Part 2

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Last weekend, I survived a birthday party. It’s nothing new, but it is.

If you know autistic people, then you know there are some easy, basic, common triggers to where it all “goes sideways” for us. Changes to routine, unpredictability in events, people, ambiguous plans, whatever.

After the party ended, Mo insisted we go to the afterparty — essentially just a free-for-all at the Denver Children’s Museum.

On the face of it, that wasn’t a bad idea. We’d been given admission thanks to the party hosts. But apparently, everyone and their tots also had the same idea that gray, chilly Sunday afternoon as well. Once more into the breach, I guess.

If you want a perfect storm of cacophonous, noisesome, exuberantly buzzing sonic pestilence, then I highly recommend a busy kids museum. It’s perfect, but:

Cramped spaces, scattered chaos, and constant loudness are major stressors for us autistic folks.

I leaned over, almost yelling in my wife’s ear: “This would have ruined me as a kid.”

But now, not so much.

*record scratch*

You read that right: I’ve found ways to cope with what used to be an impossible combo of stressors for me.

I’m not saying there’s a prescription, nor some strategy – just some benefit of circumstance, experience, and focus.

Here’s what helped:

Growing up loud. When I was younger, I’d start getting disconcerted and comment on how quiet it would get. As the oldest of five, there was always just noise. Siblings, activity, TV, something. Having the options to duck out and tune out was essential, but throughout life, bustle was my normal. It still wears me out, even if it doesn’t freak me out.

Have the getaway planned. We were only going to spend about 45 minutes at the museum, so having that set in stone was key. It’s not so much about the details of the plan – but that there’s a plan at all. That helps.

Being active, not passive. It’s like getting wet while swimming vs. standing near the pool: the difference is the intentional experience. My daughters were having a blast, but my youngest still needs supervising — it’s easier for me to “lean in” and keep watch and engage her (and Mo) and do my part to be a part of the noise, rather than let it splash me.

Find focused downtime. I can’t stay fully engaged forever, but I’ve found helpful “focused disengagement.” Near the end, we let Mo and Zo loose on the play kitchen. While most parents took that as a chance to bury their nose in their phones (hey, I’m guilty too), I knew I’d get distracted from that. So I watched the girls, interacting, cooking with their ingredients, following their paths around the kitchen, etching observations and just, I dunno, enjoying my kids playing? It gave me both enough to do without having anything to do.

We got home, and I got straight into cooking dinner.

“You did pretty well with all that, being you and all,” said my wife.

“Yeah. Yeah, yeah, yeah”, I nodded, shaking out excess party from my eardrums.

That’s good, because we’re doing this again next weekend. And the next. And the next.

Birthday Parties in The Life Autistic – Part 1

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I am now in the “children’s birthday party gauntlet.”

You may know the deal: where weekend afternoons are a carousel of venue and child and celebration of birthdays that sequence from party to party to party, with classmates you hear about and parents you’ve never really met.

It’s how it happens. It’s what you do.

This was my first of those.

Even for normal adults, it’s not the most ideal scenario.

But I’m not a normal adult.

Despite my cheeky snapshot above, I managed to survive and even smile through full-on kid birthday gauntlet fever in The Life Autistic.

Thankfully, I’ve got social survival skills:

Doing things. One of the other moms asked if she could help setup. Great idea, thought I, until I realized she took the one box of things that made for an easy task and left me, uh, nothing.

Finding a corner. That didn’t work. We were just late enough to where the corner/side seats were taken. Drat. Find a wall, find a wall. 

Chase my younger child. Mo, my oldest daughter, is as learned and practiced socially at 4 as I am at “older than 4,” but Zo is kind of a wily, todding, ornery, troublemaking baby. Of course, today, she was perfect and didn’t need corralling or chasing.

Well, those options disappeared quick.

Help.

Things eased up as “the process” began. When there is process, there is peace. Chaos, too, but at least it moves in a sequence: crafts, snacks, cake, cleaning, and more cleaning.

Thank goodness my wife was there, else I’d have been unmoored and adrift in having to solo it out with other adults. I can make the moments count, but I need a safe harbor.

So I did venture out once or twice.

When the kids’ dad himself got a plate of snacks, I overheard him getting chided for not announcing that “everyone was welcome to get food.” I can relate to that! So I ended up joking with him a bit later, remarking how “It’s like a pool party — someone’s just gotta jump in to let everyone know it’s open.” To my credit, I did not reference the arcane source: a pool party episode on Nickelodeon’s Doug.

Then when I noticed their grandmother laying out cupcakes on plates with sprinkles, I leaned in to ask:

“Oh, is this a decorate-your-own-cupcake thing?”

“It sure is,” she beamed.

“Ok, we’re leaving – it’s been great!”

For not getting sarcasm, I can sure dish it hot — we all laughed.

After cupcakes and controlled chaos, they announced that the Children’s Museum would be ours to explore for the next hour or so.

“Dad, can we go?” asked Mo.

The party quieted down in my head as I could hear the distant roar of hundreds of other kids throughout the museum’s floors, thinking back to the unending trickle of parents, children, escapees from the boredom of a Sunday afternoon, ready to burn off that excess energy here.

“Of course we can go.”

To be continued.

 

 

The Small Corner of Hope in my Autistic Experience

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I took this picture from a secluded nook at Garrison, the nice restaurant enclave at Austin’s Fairmont hotel.

I’m a lone wolf’s lone wolf, and this trip I went four-for-four in dining alone and saving some social energy. Sure, it looks sad and can feel sad, but I’d rather that mild loneliness than just peter out and turn to dust and reduce myself to grave, stone faced catatonic jelly at a table with others.

Anyway.

When I set about The Life Autistic, I did so as this kind of redemptive, explanatory narrative.

But y’all, I am doomed. 

It’s not bad, but there’s nothing left I can redeem. I am who I am at this point, and breaking the bedrock of preconceived notions; it’s impossible now.

So why keep at it?

During my trip, I found myself using a code phrase to refer to my autism: “me being me” — it was enough to help ascribe things as unique to me, without letting on too much for those not fully disclosed.

But to that, I had people respond with another code: “Yeah, I read your LinkedIn.” 

People. Plural.

That was the signal.

In a mix of smile, bashful nod, and a hackneyed joke (“I guess people do read that”), it took the pressure off, where I could be more open in those moments. To share a little more about what makes me, me.

Even if I’m pretty much done and dusted in terms of what and how people regard me — autism or not — I still have one corner of hope.

The rest of the people you’ll meet on this Life Autistic.

The ones you don’t know yet. The ones you’ve not made up your mind about. Maybe you’ve never met. Maybe they’ve yet to be born.

For fearing my transparency, opening up about this, for so so long, I thought it’d do me more harm.

But it hasn’t. It’s done a little good.

I’m hopeful, because these conversations, this cracking open of an open door — it will do even better for others who follow.

They’ll meet more understanding, sympathetic folks in their lives.

People who learned just a little bit more about some rando’s autism experience, enough to color in the gray, to enlighten just a fraction more.

For those of you who do read, who notice, who endure reading the entirety of a post — thank you.

It may do me zero good in the end — that’s OK.

My corner of hope is that it will do more good for others like me. 

Autism Has a Daredevil Problem

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Think of when Netflix’s Daredevil was all the rage. Great show. Stellar choreography. Solid first season.

The hero, Matt Murdock: a blind man, yet super-attuned in his other senses, able to overcome that disability to where his other abilities could shine.

Now imagine people.

“I don’t think he best represents the blind community.”

“He’s only blind when it’s convenient for him.”

“Matt Murdock doesn’t speak for the REAL challenges among the blind.”

“He probably isn’t even blind at all.”

Think how patently absurd that is. But y’all, that’s believable. And I feel we can face similar challenges on The Life Autistic.

Autism has a Daredevil problem.

What’s a ‘Daredevil problem?’

It’s when autistic people overcome obstacles, adapt to situations, learn to mask as neurotypical, and articulate their experiences — to the degree that people don’t believe they’re autistic or don’t validate our experience on the autism spectrum.

What?

Yeah. Imagine that.

I’m not as severe on the spectrum as others are, but that doesn’t mean I cannot still voice where I am on the spectrum.

I’ve managed to overcome many social and interactive anxieties; that doesn’t mean they’re “100% gone” or “never existed” or that I don’t still struggle.

I can hold my own in conversations and keep an “almost charming” veneer, but that’s work and I deserve to speak to that work. I’m not invalidated by where I’ve built strength.

I explain how I feel; I’m not trying to excuse it all. I can keep myself from reacting poorly, from doing wrong, but I can’t change how things affect me and my soul: routine disruptions, closed spaces, ambiguities.

No. 

There are too many autistic Daredevils out there, who have managed, who may not be as severe, may not be those with the uttermost of need. We may even be totally independent, high-achievers, and *gasp* fun people.

But it is unjust to toss aside our articulations, our adaptations, observations, and our voice by dint of “accomplishment” and “success.”

Are you trying to imply that we can’t be…adjusted and autistic?

Not everyone among us can fight for us.

But we can.

 

The Traveling Life Autistic

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I’ll be traveling for work this week, so this may be more an endeavor in collecting stories than writing them.

Maybe I can share one Hunter-level quirk, though — airports and air travel don’t much bother me anymore.

You’d think that’d be triggers within triggers, but not anymore.

I’ve done this so much that it’s its own routine. Even the delays. Waiting. Standing by. Being in close proximity with others. Cramped spaces.

In a way it’s gotten predictable. And I like predictable. I like that I can plan.

Granted, I hate not having my family around, so I do feel a bit exposed. But with AirPods and with a good ability to have something to work on (like this blog) or to sleep at the drop of a hat, I’ve come around on autism airborne.

Sure, it only took about hundred flights over my few decades of life, but I’ve arrived 🙂

Catch you next week; I can’t wait to share some upcoming tales.

“Love, Hunter” – The One Tough Thing I learned from Valentine’s Day

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photo: handmade valentines from Mrs. H2, #craftymom

There’s always a point in my life where I can look back and say that “I didn’t know any better, and that’s what did me in.” Third grade was one such time.

I seem to recall that class experience as having been terrible, in general: I don’t adjust well to things, and plopping down mid-winter into cold-hearted, unwelcoming elementary group only exacerbated that more.

A month in or so, as things warmed up, I’d started to manage – kept my head down, clammed up more, gravitated toward the kids who were just less incorrigible and coarse, and learned the “game.”

Back then and at that age, Valentine’s Day was a mere functionary party-vehicle. We didn’t get into the “mushiness” of it — it was just baskets at the front of the desks, perhaps a bit of chocolate, with some added festive decor slapped to the bleak walls of the class in the form of a paper heart or two. Simple. Innocuous.

I should have known better.

My dad enjoyed a bit of bitmap art on MS Paint back in 1995, so he designed and printed Valentines for me to dish out. Pretty cool, I thought. At least it’d be unique, and the pixelated renderings had a certain robotic quality that appealed to me.

I passed out and slipped in each printed, cut Valentine – deft, light, bespoke. Sure, some of the kids sneered, but that’s what they did, as I’d long made peace with the fact that I’d just not be liked, or that their souls would rot in Hell — whatever comforted me at the time.

As we lined up to leave after the “event,” one of my classmates had their sheaf of valentines on hand, rifling through them. Then I heard her read mine aloud, in hilarious disbelief:

“Happy Valentine’s Day! LOVE, Hunter. LOVE?!?!”

I don’t recall where I was in line, but they all turned to find where I was and laugh. Scorningly, blisteringly laugh me to shreds. I don’t know if one can be the butthole of a joke, but I was right then.

In the din of chuckles, giggles, bellows, asinine guffaws, I flooded in tears, my face red hot, my mind racing to backtrace and think of how I could have stopped this. “What was I supposed to do? It’s Valentine’s Day. Of all days, surely this would be the one where—”

I should have known better.

Little autistic H2 didn’t have the frame of reference and self awareness to stop and tell dad, “No, PLEASE, just say “From, Hunter.” Trust me, it’ll spare me an episode.”

I came home miserable, my dad felt awful after I shared the story, and I learned a bit more about self-awareness, perception, and how I was so underequipped to handle this stuff.


 

At Christmastime, I take out a box of tags – for presents. For my lovely wife of ten years. For my daughters, brilliant and delightful, cheerful girls. There, on each tag, I see two fields.

To:

From:

I still remember this Valentine’s Day from 3rd grade. I think about the one word. The wave of shame. The juvenile idiocy. Not having enough to know to make one key change.

But I know better now.

I cross out From: and write LOVE.