#AutisticAF Out Loud

Inside Autism & Eye Contact: How It Feels… How to Deal with the Terror s2e6

April 27, 2022 John M. Knapp Season 2 Episode 6
#AutisticAF Out Loud
Inside Autism & Eye Contact: How It Feels… How to Deal with the Terror s2e6
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Show Notes Transcript

Her eyes. So big… Then… Bigger…. Brighter… Enormous… 

I can’t hear anything but a roar. Spinning. I’m going to fall… Terror. That's what eye contact *feels* like… 

Videocast with captions: https://www.youtube.com/channel/UCyhr_MrWVItlwTWODxbZR6A

Transcript: https://autisticaf.me/2022/04/28/inside-autism-eye-contact-how-it-feels-how-to-deal-with-the-terror/ 

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HI I'm Johnny Profane. Welcome back to Autistic as [ F*** ] 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 them 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 and Eye Contact: How It Feels... How to Deal with the Terror." {s2e6}

[ music ]

My wife and I are musicians. We're finishing our 15 minutes of fame playing Rusty's open mic... maybe Shorty's Bar. I disremember 2012. 4 BD. 4 years before diagnosis.

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 and 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 all around the room. Never lingering. Never focusing...
"Look at me, hon."

She whispers, "Look at me."

So I do. A few seconds... Her face up-turned. 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 out something. JUMP BACK. Stumble through some dancers... 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 because 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 and educators try to train out of us. Forcing autistic kids to maintain eye contact. Using behavioral rewards and 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 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 artists 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 over stimulation 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 links 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

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 know me

like that sick panic when you stumble on stairs all 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 non-stop looking for an angle

sitting across from a silicon valley vulture capitalist as you ask for a couple hundred k for expansion knowing you can't make that next payroll I read faces he said I have to know who's got it and who's full of [ __ ] I glanced 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 kind of a 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 you look off like you're thinking or you can salt papers and peer up for a second then the brutal kill shot 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 a 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 two or three but it's only a few years ago I discovered that I shift my eyes from eyebrows to cheekbones to nose you know quick constant reflex glances to mimic looking into your eyes

so you won't know I can't because if you find out

we end up hurting each other odd pertinent fact i've been a salesperson and a therapist in my life and pulled it off for short periods because I 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 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 got a deal so six high concept guidelines I use for panic number one 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 number two

I watch for my own unconscious stims and strategies am I stimming am I staring off am I distracting the conversation with humor number three 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 stem or strategy when I use them artfully consciously on purpose they help number four 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 the sales clerks new friends customer service reps on the phone helps number five I ask myself do I feel safe or not in this 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

number six 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 be 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 and 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 me depression

I try try try to maintain regular living routines what they call activities of daily living shower shave dress laundry I'm not clear if they have protective comforting power or if I begin doing them again because I have the energy to resume

and then 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 it makes all the others possible it's the one that saved my life these are all the 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 panics obsessive thoughts shutdowns 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 the 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 because well I felt like I should just know it already you know big mistake got out of the habit lost the source of my comfort my emotional roller coaster pretty much went off its rails again forcing me to recreate it so sharesies

there's a snapshot of my personal card in the transcript hope it's useful for others

here my do's and don'ts for meltdowns panic and obsessive thoughts one tell someone I trust frequently speaking my fear out loud tames it if I catch it early enough two depending on the situation I do what I can to trigger relaxation deep breathing walking engaging in my senses maybe snapping photos

taking a nature bath walk in woods just natural sounds and 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 and facebook for sure drink a little wine or beer too much depresses me a sip at a time

take a long time in a safe space lock doors turn off the phone no visitors sunbathe or go to a tanning booth long hot showers my favorite stem of all time

three distract by doing clean or organize I start small a bookcase or a 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 you know solo against the laptop no friction play a musical instrument but I got to be careful sometimes it triggers my perfectionism read something low emotion not the news indulge any special interest especially physical like gardening

or begin creating anything cook write words of music do art or craft decorate a room or a notebook cover garden again 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 sell for others for at least a timed half hour don't answer phone or door 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 ours parties social or family gatherings

avoid commitments or decisions don't buy freaking anything because decisions judgments and regrets are exhausting I gave you everything I got so far but please comment private message me or email 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 and 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

that's a wrap I hope you enjoyed this episode of autistic as [ __ ] out loud so far my stories on the experience of autistic symptoms and diagnoses are listener faves quick reminder you can now find the autistic af 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 autistic af dot 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 kofI 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