Inside Autism & Eye Contact: How It Feels… How to Deal with the Terror

AutisticAF Out Loud cover art for S02E06.Top frame: Headline reads, "New Episode, Inside Autism & Eye Contact: How It Feels... How to Deal with the Terror". It features an illustration of an elderly gentleman, reading from a script and wearing sunglasses & fedora hat. Bottom frame: "No Cure," original digital illustration in a graphic-novel influenced style of an adult male eye, held open by retractors.
Season 2, Episode 3. Listen or download at 3 dots.

Designing My Home Around Adult Autism: Pt. 2 – 7 Survival Principles #AutisticAF Out Loud

  1. Designing My Home Around Adult Autism: Pt. 2 – 7 Survival Principles
  2. Designing My Home Around Autism: Pt. 1 – Making It Work for Me
  3. Inside Autism & Eye Contact: How It Feels… How to Deal with the Terror s2e6
Subscribe to hear new episodes…
AppleSpotifyPocketCastsAmazon/AlexaAudibleMore Platforms
INTRO
Now a Video Cast
INTRO
NOTE: Transcript to be upated with several brief adlibs.

Hi! I’m Johnny Profane.

Welcome back to Autistic AF Out Loud!

Listen, what’s the hang-up with “eye contact”? Why do employers, teachers, parents… demand it from autistic folks?

Look, we have moral character. Strength. Honesty in abundance… Most of us.

If you’re looking for our souls… you won’t find ’em in our eyes.

But if you’re autistic, love one, work with some… or just can’t figure out if you could be one…

Before you judge our character by our eyes…

Or “train” us to do something unnatural, and terrifying for most of us…

I want you to experience what eye contact feels like… for me.

Real talk. About what it’s really like…

With 6 simple ways to deal with events that trigger panic.

Why? Why a whole episode on eye contact?

I have this crazy idea. More like a hope…

If I can bring you inside my world, see what I see, feel what I do…

We can stop hurting each other.

So…

This…

This is what I call, “Inside Autism & Eye Contact: HowI It Feels… How to Deal with the Terror.”

Episode

My wife & I are musicians. We’re finishing our 15 minutes of fame playing Rusty’s open mic. Mebbe Shorty’s Bar, I disremember…

4 B.D…. 4 years before diagnosis.

She’s pumped… like always. At least, whenever our friends rush up and tell us they loved our set. Eyes dancing, flirty mouth pouting…

Looks me in the eye, “C’mon. I wanna dance…!”

I love her green eyes. Always treasure seeing them…

Can’t ever remember ’em. Cuz face blindness.

Can’t ever more than peek at ’em… without looking away. Cuz autism.

Look, I’m the Worst Dancer in the World. Problems with balance. Outrageously uncoordinated…

Teen nickname? “Hey-You-Spazz.” At this moment… It’s “58-Year-Old-White-Never-Learned-to-Dance”…

Back in 2012… I still believed I could survive bars. You know, by entering my own dissociative bubble. Become invisible. Sorta like Richard Mulligan on Soap… Only room for Kimmie & me…

All the while I chant in my mind, “I don’t care what they think… I don’t care what they think… I don’t CARE what they think…”

And, I had one survival rule. Never dance… But Kimmie… My wild-woman gypsy. Cuz, something deep inside autistic me… Moth met flame.

Caught in the moment, I say, “Sure.”

So for about 5 minutes, I’m doing the White Guy Rock, weight on right, shift left… weight on left, shuffle right. Eyes sliding around the room, never lingering, never focusing…

“Look at me, hon,” she whispers. “Look at me.”

So I do. A few seconds. Her face upturned. Eyes glistening… A few seconds more…

So calm. So happy. So big… Then… Bigger… Only her eyes… Brighter… Enormous…

I can’t hear anything but a roar. Spinning. I’m going to fall… I shout or something. Jump back. Stumble through some dancers to sit down.

Kimmie’s shocked. You know, everybody’s shocked. Especially me.

This is what happens when I gaze too long into eyes. Even eyes I admire, respect, trust…

So…

I don’t look straight into your eyes. Not cuz I don’t care. Or I’m mad. Or I’m hiding something. Or I disrespect you. Or I’m lying…

I CAN’T look into your eyes. Because I PANIC. And sometimes…

I disappear. At least, I lose what I recognize as me. For a moment. Sometimes more. What pros call “ego dissolution.”

For most folks, this only happens at a moment of certain death. Or on Acid…

But lots of autistic people describe similar feelings during intense eye contact. And we have… for a long time.

The same feelings that many parents & educators try to train out of us. Forcing autistic kids to maintain eye contact. Using “behavioral” rewards & punishments. To force autistic kids to adopt what they call a “necessary social skill.”

See, avoiding eye contact isn’t a “bad habit” for autistic folks. Maybe no one knows why yet. But it’s part of our brain wiring. Maybe it’s a powerful instinct for us… as it is for most mammals. In reaction to danger or hostility.

And forcing it? Causes many of us pain. There’s a video link in the transcript. You can see the agony on a kid’s face during “training.”

In 2017, researchers did “live streams” of autistic brains. As autistic subjects stared straight into eyes.

The scientists stared at their fMRI screens. The amygdala and other brain regions were lit up like Christmas trees. Documenting the discomfort… the pain… the suffering of the autists.

In the words of the authors…

“As it turns out, the issue isn’t so much that autistic people are insensitive to the feelings of others. It’s more that their brains are oversensitive. “When autistic volunteers were given visual stimuli of other people’s faces, the researchers found an excess of activity in the amygdala, the part of the brain responsible for recognizing faces and interpreting facial expressions. “That kind of overstimulation can cause pretty severe anxiety, which in turn can make meeting a stranger’s (or a friend’s) eyes downright frightening. “That heightened anxiety? It’s basically what autistic people have been talking about this whole time.”

The link is in the transcript.

But honestly? The “possible” research-of-the-moment “explaining” autism…. means less to me than reports of naked experience.

When I look for more than a few seconds into anyone’s eyes, even the love of my life’s… I begin to lose my perception of my surroundings. Sounds deaden. Details fade… Lights get brighter and brighter… I can’t see the face, only the eyes… My heart races… I begin to feel faint… There’s a sensation of spinning, then falling…

I not only feel the onset of panic… I feel “ego dissolution”… No joke. I lose who I am. Not amnesia. Just no “me.”

Like that sick panic when you stumble on stairs, fall out of a tree, jump at a car horn… Sometimes, when I fall asleep…

As if I were dying.

Extreme as this may sound… It was the way things were. All I ever knew. For most of my life. I never thought about it.

Until I sat across from a potential investor in my startup computer magazine. 1983. You know how sales types read your face… nonstop… looking for an angle?

Try sitting across from a Silicon Valley vulture capitalist. As you ask for a couple hundred K for “expansion”… knowing you can’t make the next payroll.

“I read faces,” he said. “I have to know who’s got it. Who’s full of shit.”

I glance. This is it. I either close the deal. Or…

“Now, you… You don’t read faces. In fact, I’m not sure what you do.”

There’s a kinda neutral curiosity to a seasoned investor. Like a reptile, eyeing you… stating facts.

“You stare hard,” He does that two-finger move, back and forth. “Then ya look off like you’re thinking. Or you consult papers, then peer up… for a second.”

Then the naked killer…

“I don’t know if you look into my face. My eyes. Or just stare at my forehead…”

I took another meeting or two. With his subordinates…

But I never landed the deal.

Eye contact. I knew enough… on some level… to fake it. Somehow… I knew people required it.

But the fear was always there. I remember distinctly horrific fear of eyes at age 2 or 3…

But it’s only a few years ago… I discovered that I shift my gaze from eyebrows to cheekbones to nose. Ya know, quick, constant, reflex glances… To mimic looking into your eyes.

So you won’t know that I can’t. Because, if you find out… We end up hurting each other.

Odd pertinent fact. I’ve been both a salesperson & therapist in my life… And pulled it off. For short periods…

Cuz, “high functioning?” Listen, being articulate has nothing to do with survival… Take it from me.

But not every autistic person has words to explain. So I tell my story. Hoping parents, friends, lovers, teachers, bosses, strangers in the street will…

Stop demanding the right to torture many of us… to make you feel more comfortable.


Okay…

Anxiety and panic will always be part of my life. Whether it’s caused by autism itself… or the trauma of growing up in an autistic-hostile world.

And whether others support me on my journey… or not… I gotta deal.

SO… 6 HIGH-CONCEPT GUIDELINES I USE FOR PANIC

#1 The Obvious. I monitor if I’m uncomfortable. If I MUST face someone… or any other anxious situation. Are my muscles tight? Nausea? Jaw clenched?

#2 I watch for unconscious stims & strategies. Am I stimming? Am I staring off? Am I distracting the conversation with humor?

#3 I use my strategies… by choice. I shift my focus from one cheek to another. One eyebrow to another. Make dramatic pauses and look away. As with any other stim or strategy, when I use them artfully… They help.

#4 I tell people about my discomfort. At first, I could only tell my intimate friends. I had a lifetime of shame to overcome. But now, I feel safe saying a couple of words to explain. To sales clerks, new friends, customer service reps on the phone… Helps.

#5 I ask myself, “Do I feel safe… or not? In the situation? With myself? Do I need to leave?” And at this point, there is no situation I’m NOT willing to walk away from. Short of handcuffs.

#6 Reduce the harm… by self-care.This isn’t a method. A diet. A regime. NOTHING that cures my autism. But I have more good days.

  • Eat “healthy,” whatever that means to me at the time. I function better on a plant-based diet. Eating only when I’m hungry. Eating few processed foods. I do risk nutritional deficiencies because I had bariatric surgery. So I take a fair number of vitamins to survive.
  • Sleep routines… regular in length and schedule. Daylight Savings Time & jet lag knock me out.
  • Relaxation. Deep as I know. A few folks experience anxiety from meditation. But it helps me.
  • Regular LIGHT exercise… heavy exercise can cause depression.
  • I try, try, try… to maintain regular living routines. Activities of Daily Living…. shower, shave, dress, launder… I’m not clear if they have protective, comforting power. Or if I begin doing them again because I have the energy to resume.
  • Daily contact with someone I love… and loves me. This is a hard “suggestion” to make. So many autists report not having a loving person in their life. I understand. I did not meet such a person until I was 58.

But this is the “suggestion” that makes all the others possible. It’s the one that saved my life.

These are all high concepts I’ve come up with so far. I’ll keep you posted.

Thing is… These are useful for avoiding panic. Who remembers ANY “principle” in the heat of terror..?

So, I carry a pocket list of personal strategies. For meltdowns, panic attacks, obsessive thoughts, shutdowns, and depressions. Have since before I knew I was on the spectrum.

I’m bright enough, with a detailed memory.

But when the fog of meltdown comes on, I can’t think of what to do in that moment.… To deal.

So when I feel I’m losing control… I slip away, pull my list from my wallet… and remind myself of what works for me.

At first, I felt embarrassed… inside. Kept it secret… It felt pretty… childish.

And then, for a while, I stopped referring to it. Cuz.… Well, I felt like… I should just know it, already. Ya know….?

Big mistake.

Got out of the habit.… Lost that source of comfort. My emotional roller coaster pretty much went off its rails again. Forcing me to re-create it.

So… Sharesies! There’s a snapshot of my personal card in the transcript.

Hope it’s useful for others…

Photo of hand-written Do List, front of envelope. Text included in transcript.
Wallet Do List
Photo of hand-written Don't List, back of envelope. Text included in transcript.
Wallet Don’t List
MY DO’S & DON’TS FOR MELTDOWNS, PANIC & OBSESSIVE THOUGHTS
  1. I tell someone I trust. Frequently speaking my fear out loud tames it. If I catch it early enough.
  2. Depending on the situation, I do what I can to trigger relaxation.
  • Deep breathing.
  • Walking, engaging my senses… like snapping photos.
  • Take a “Nature bath”… walk in woods, just natural sounds & sights.
  • Do a repetitive, productive task… sweeping, mowing.
  • Meditate, do yoga, pray… pick your poison.
  • Reduce stimulation… lower lights, close windows, turn off fans. Turn off the TV, radio, Facebook.
  • Drink a little wine or beer. Too much depresses me. A sip at a time.
  • Take alone time in a safe space… lock doors, turn off the phone. No visitors.
  • Some natural scents soothe or focus me…
  • Sunbathe or tanning booth.
  • Long, hot shower. My favorite stim of ALL TIME.
  1. Distract by doing.
  • Clean or organize… I start small, a bookcase or single corner nook. See where it goes.
  • Solve a household problem. I always get a rush from fixing something.
  • Use my mind, without emotion… crossword, chess. Ya know, solo. Against the laptop. No friction.
  • Play a musical instrument. But I gotta be careful… sometimes it triggers my perfectionism.
  • Read something low-emotion… not the news.
  • Indulge any special interests… especially physical, like gardening.
  1. Begin creating… ANYTHING.
  • Cook.
  • Write words or music.
  • Do art or craft.
  • Decorate… a room or a notebook cover.
  • Garden.
THINGS I DON’T DO… WHEN I EXPECT A STRESSFUL EVENT.

For instance, face-to-face meetings.

  • No Facebook or Internet.
  • No extra caffeine.
  • No weed or drugs… the effects are too unpredictable for me.
  • I have to guard against retreating to bed. I need rest. I don’t need to encourage sluggishness, lethargy, depression. This is a hard line for me.
  • No TALKING! To self or others… for at least a timed half hour.
  • Don’t answer phone or door… a timed half hour.
  • Don’t play radio, CDs, movies… a timed half hour. Too much media… getting all excited, but sitting sluggish, in a chair… plays havoc with my mood.
  • Avoid loud, complex places… bars, parties, social… or family functions.
  • Avoid commitments or decisions.
  • Don’t buy freaking ANYTHING! Cuz decisions, judgments… and regrets… are exhausting.

I gave you everything I got. So far. But please…

Comment, private message, or email me any of your strategies!

You may well help others…

Including especially autistic kids… And me.


One last word on any form of forced behaviorist training. Names you may recognize… ABA, or Applied Behavioral Analysis. PBS, Positive Behavioral Support. Or CBT, Cognitive Behavioral Therapy.

Their goal is to control human behavior. Not on increasing the comfort, functioning, or joy of children. Or adults.

They meet the needs of parents, teachers, caretakers… and ultimately, doctors. To control undesirable behavior.

Punishment & reward works to change behavior in kids AND adults. Temporarily.

Same as it works on rats. too for that matter…

Come to think of it…

Please think of it.

Then think about what your loved ones really need.

OUTRO

That’s a wrap!

I hope you enjoyed this episode of Autistic AF Out Loud. So far… my stories on the experience of autistic “symptoms” and diagnosis are listener faves.

Quick reminder you can now find the #AutisticAF Out Loud podcast on Apple, Spotify, and most podcast platforms. YouTube has every episode with closed captions to support folks with audio processing difficulties.

The blog at Autisticaf.me has all transcripts… and additional posts.

If you’ve enjoyed or learned something from this episode, please consider supporting my expenses. Most podcast apps have a support button. And there are links to PayPal and Ko-Fi in the transcript.

Right now, I need to replace my mic with a podcast-friendly Yeti… which runs about $150. You could really help with just a few bucks.

But… as always…

The best support you can offer…?

Share this episode with a friend that you know… cares.

Further Reading

An excellent article on autistic eye contact, by Emma Dalmayne.

Designing My Home Around Adult Autism: Pt. 2 – 7 Survival Principles #AutisticAF Out Loud

  1. Designing My Home Around Adult Autism: Pt. 2 – 7 Survival Principles
  2. Designing My Home Around Autism: Pt. 1 – Making It Work for Me
  3. Inside Autism & Eye Contact: How It Feels… How to Deal with the Terror s2e6
  4. Fanning the Flames: #AutisticJoy in the Classroom – Intersectional Infinity Conference s02e05
  5. Selective Mutism: I Have No Mouth. But I Must SCREAM… s2e4
Subscribe to hear new episodes…
AppleSpotifyPocketCastsAmazon/AlexaAudibleMore Platforms

Support AutisticAF.me here: Paypal · Ko-Fi · Facebook Pay “Johnny Knapp Âû

Add tag…

Leave a Comment

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.