Autistic masking: a dangerous survival mechanism | Leah Reinardy | TEDxHopeCollege

all right so most of you are strangers to me so allow me to take you through my meeting a new person protocol hey how's it going now that i have properly scanned all audio and visual stimuli in the room i can officially commence the small talk at this point i'll make an unoriginal remark about the weather you nod and reiterate what i say in more concise wording i answered some kind of joke here it'll be an accurate observation that i know will make you laugh this is where you laugh now that i am already tired

of doing the small talk i will proceed to info dump about something i find fascinating you will appear interested i'll be unable to tell if you're being genuine or not okay you get the idea you just witnessed where over half of my brain power and energy goes during a standard interaction and that doesn't even cover nonverbal cues and facial expressions why does my brain do this because i'm autistic why can i nail that conversation because i've had over 21 years of practice i learned this skill of social scripting through a lot of trial and error

growing up here's what happened i'd say the wrong thing in the conversation or speech receive an unpredictable response back in panic often bursting into tears when this started happening around age five people thought little of it they thought i was just going through a phase they'd ask me leah what's wrong by the time i turned eight two more dehumanizing words were added to that question what's wrong with you you that word you i began to picture myself across the chasm from the neurotypicals in my life a wide trench dividing me from a world filled with

cues i couldn't understand standing on that side of the chasm taught me something i internalized as fact my ways of interacting with the world were unacceptable this thought consumed me until eventually inferiority became inseparable from my identity i only saw one solution learn to fit in every day i'd observe the gestures syntax and tone used by the people around me i'd mimic what worked and when interactions i observed were too awkward or unsuccessful i'd note the mistakes over 75 of my brain power went to the how of each conversation not the what the term special

interest describes a trait of autism where autistic individuals latch on to a niche topic of interest my first special interest was the tv show survivor every wednesday night i run into the living room and turn on the tv to dissect tribal alliances assess the latest blindside and study the mannerisms the castaways use to build trust i broke this show apart the same way i would break apart music my primary special interest analyzing the inflection of a melodic line the rhythm of comedy and tragedy the call and response that paralleled that of an effective conversation so

i quickly became fluent in three languages survivor music and neurotypical as i learned observed and mimicked i built a bridge across the chasm a mask a way i could cross every autistic person builds this bridge differently some lean on their special interest others learn from the media others prefer to learn from real people however none of these methods would work if it weren't for one other crucial design element reinforcement the more teachers saw me as normal the higher my grades would be hell if i put on a strong enough social performance i might even make

a friend eventually i got so used to crossing this bridge that i did so subconsciously when i masked i could be anyone i wanted to be it was so exhilarating to just be normal but it came with a price i was in therapy by age 8 and on antidepressants by 10. by the time i hit middle school i was this model student by day but would come home and completely break down at night i could never stop this performance for fear of being viewed as rude incompetent or unprofessional they would see what's wrong with me

on november 9 2011 at 11 years old i attempted suicide for the first time and i am no anomaly autistic children are 28 times more likely to attempt suicide than their neurotypical peers well autistic adults are six times more likely psychiatric hospitalization is traumatic to neurotypicals but it's often worse for neurodivergent people the communication barriers between me and the neurotypical psychiatric staff turned my time there into a living hell when i left i made the commitment to mask even more i feared that if i unmasked if i had a single meltdown after that hospitalization that

i'd be brought straight back to the hospital i was terrified of unmasking and for good reason roughly 75 percent of autistic people are under or unemployed that number increases to 85 percent for autistic college graduates autistic people are at a seven times higher risk for sexual assault our safety well-being and financial security are at stake many times how well we perform determines our very survival by the time i got to college i messed with everyone therapists mentors close friends by doing so i was effectively shutting them out of my life my college experience was this

cycle of self-destruction psychiatric admissions and shame with each repeated implosion i tried to fight these intense amounts of suicidality by suppressing the emotions that lay beneath one of my friends pointed out that my emails didn't even sound like me anymore i can be myself when i graduate i tell myself i can be myself when i'm more established in my career i just need to push through this week this month this semester because the reality is masking is exhausting the sounds the sights the tags on your clothes all excessive stimuli that takes energy to process and

when you're putting all your energy into surviving all you want to do is turn it off turn the tv off but survivor was no longer just a game on tv i couldn't turn it off instead i had to try to wake up and choose life daily you see i didn't want to die i just wanted to escape from this massive weight my mask had placed on me and i didn't see any other viable way to carry on and as a young adult the psychiatric hospital was different some of the most beautiful moments in my life

took place in these hospitals i led jam sessions from out-of-tune upright pianos had philosophical conversations over dinner and simply wept with people fighting battles so similar yet different to my own i was truly unmasking for the first time however each time i left the hospital i had to face the people who cared about me i would sit there in helplessness and anger as they sobbed on my shoulder yelled at me or treated me as though i was some kind of broken doll and while i wasn't broken every hospitalization fractured my world broken promises to stay

safe broken relationships broken opportunities for personal growth broken people now traumatized from saving my life time and time again i believed my very existence caused others pain so as quickly as the mask came down it went right back up i kept this mask up until i couldn't anymore on december 27 2020 i ended up in the hospital with a three foot long blood clot in my leg and a pulmonary embolism while i awaited my potential deaths all alone with 20 different electrodes on my body monitoring my breathing i masked in order for doctors nurses and

surgeons to take me seriously when i don't mask in this setting i often get talked to as if i have the cognitive abilities of a five-year-old so i lay in the dark listening to bill evans you must believe in spring and i made the commitment that if i lived to see the morning i would refuse to be anyone other than myself i would take off the mask so spoiler alert i did in fact survive but in on masking i immediately hit a barrier who was i i'd almost completely lost my personality and identity the mask

and i were inseparable so i listened and observed less and spoke more when i stopped restricting intuitive body movements and allowed my voice to follow its natural inflection its melodic line i felt energized i found other autistic advocates online through ted and tedx talks gaining deeper self understanding through listening to other stories and over the course of a year i went from hiding in my room watching these talks to becoming an advocate who refused to shut up for what they believed in and with that came some hard truths i learned that i have not overcome

anything there are still days where i cannot physically speak i continue to feel as though i'm separated by this chasm in most conversations i still have to choose life every day i mean earlier this week i was in a partial hospitalization program because i'm still learning to carry this massive weight this trauma that comes with my mask and i've learned my life isn't this neat story i can shape this narrative like it is would be incredibly misleading you might not realize this but i've been halfway masked this whole time i'm not going to confront one

of my worst nightmares standing on this stage without my strongest survival mechanism and quite frankly i don't owe you that vulnerability you also don't realize how many times i have come close to quitting tedx hope college i'd rather be behind the scenes but this is about pulling you all backstage with me sharing my story of what it's like to live behind the curtain that it is about telling this overly detailed story or worse this inspirational story of overcoming want to know another lesson i learned i can't do this alone and i sure can't do this

without you to my neurotypical friends i ask you this and what spheres of your life can you cross that bridge at least halfway and what spheres of your life can you cross that bridge completely how can you speak less and listen and observe more empower us your neurodivergent students clients patients colleagues direct reports leaders friends and loved ones and how can we create space for intersectional autistic experiences such as those of bypoc queer and other marginalized communities after all they built this bridge too to my autistic friends and really to 11 year old me because

this is what i needed to hear 10 years ago i am proud of you i am proud of your intentionality and your everyday interactions i want to challenge you to direct that same intentionality towards opening up to this bright loud ambiguous and scary world it is terrifying to choose vulnerability when you are already a member of a vulnerable and misunderstood community start with your safe spaces and work outward the unmasking process is terrifying and it's worth it you are the reason i wake up and choose life daily and if you're in a place where you

just want to turn it all off make me your reason this world needs you the real you and it could stand to learn from the ways you operate and interact within it every single day thank you you