Under the Autism Umbrella: Providing Shelter From the Storm | Kim Zeglinski | TEDxWinnipeg

Under the Autism Umbrella:  Providing Shelter From the Storm | Kim Zeglinski | TEDxWinnipeg

Translator: caterina minasso
Reviewer: Helena Bedalli Autism is a spectrum, having a range of traits from the most
profound to the very mildest forms, with each identifier often described
as being under the autism umbrella. Under the umbrella brings to mind
images of safety, protection, right? Isn’t that nice to share
an umbrella with a friend, a sweetheart, a group. How about sharing an umbrella with
the whole spectrum of people? I’m sure we’ve all wrestled with
an umbrella in the wind; all been soaked in the sideways rainfall,
and all seen umbrellas sagging and broken. So, how reliable at all is an umbrella,
anyway. Depending where you fall
under the autism umbrella, you might be the one stuck
under the broken tip, just standing there, getting wet, or you might be pushing hard to securely
tuck yourself into the middle to weather the storm. Or you might be a caregiver struggling
to give your child the best place possible because you feel like if you don’t do it,
no one else will. I’m here today to talk about the spectrum
folk with the mildest presentation. I consulted the bloggers, and carefully
considered the multitude of options. One on the spectrum
also known as autism level 1, also known as high functioning autism,
also known as mild autism, also known as pervasive developmental
disorder not otherwise specified, also known as Aspergirl, also known as
Aspergie and those from another planet, also known as Asperger syndrome,
also known as Aspie. You can see how Aspie, 1.0
is the favorite. Consider the following Aspie traits: You may be an aspie if: your very first friends were old people,
babies, and the lady next door, who wore silver and red tarot, and one day
she gave you a green jello with cream which you hated and refused to eat. And ever since you partition your food in
a tupperware pickle dish, because you hate when certain foods touch. You study people, the way that some
people study animals, and sometimes they say:
“What are you staring at?”, and then sometimes they’re friendly,
and you think they might like you. But then you think they might not,
and you’re never quite sure which it is until somebody tells you off. You discover theater
and you find your people. And they love you an you love them,
and sometimes you give them advice, and they actually take it, and when they do you feel like
the highest functioning one in the room, and you really like that. You go to a party and immediately kidnap
the busy hostess for a private chat in the coat pile on her bed,
and you don’t know that when she says: “Enjoy the party!” She’s really trying
to get back to her guests. So, instead you answer:
“I am enjoying the party!” But after she leaves, you figure it out,
so you stay there for a while because you’re really embarrassed,
and you’re fighting back tears, and because the smell of leather reminds
you of your dad, and it calms you down. You discover online communications. And you use all caps, and send all, and your entire address book is upset
with you for spamming them with that very important warning
but you don’t even know what spam is. Then one day someone sends you a really
instructive e-mail about online etiquette and you learn to use
“save draft” and “delete”, and soon you realize that
you have over 500 friends, and at least 3 likes
for everything you post. And you kind of like it that way, because
in real life there is no “edit” function. You only seem to notice body language
when someone is in trouble. Like when they’re struggling to
drag a stroller over a snowbank, or running to catch a bus. And you feel your heart racing
right along with theirs, and all you want to do is summon your
Aspergen superpowers to help them all. You eat alone in your office. Every so often you try the staff room.
You’re always late though, because you just can’t drum up the nerve. And the day that you do, it’s treat day. But there is nothing but dessert left,
and you don’t eat sweets. So, you start eating kale and parsley
garnish from the now empty tray, and lecture your co-worker
about the perils of sugar, and she stares at you
with you’re not sure what. So, you tell her, that you do indulge in a wee bit of dark
chocolate now and then, as a special treat, hoping that this new bit of information
assured you forge some coming ground. But, she gets up and clears her plate. So, you go to the fridge, and start
checking expiry dates. And suddenly you’re yelling everyone
for permission to throw out the yogurt. (Laughter) Playing hard to get is nowhere
in your relationship lexicon. (Laughter) You fall in love, get married,
and have babies. But you have no idea what comes next
because your love life checklist in your journal with the Duran Duran cover
has no empty boxes left. You are a terrible stay at home mom. So, you go out in public
to save your sanity. And it’s because the whole world
is your audience, and also because your own mother
used to do the very same thing with you. So, you already know the rules. You train your little boys to greet store
clerks and to order food in restaurants. And to look at toys without touching.
And suddenly everybody is so impressed, and you feel like a great mother,
but you hate to go home, because bad mommy lives there, and next
temper tantrum is waiting for at the door, and it could be her own. So, do you feel like you understand
the world of aspergers a little better after that helpful list? Guessing, not so much. This is my list, these are my stories. My name is Kim Zeglinski,
and I am an aspie. My oldest son is an aspie, my younger
son and husband have aspie traits. I walked this world looking through
the lands of Asperger syndrome. It’s kind of like when you buy a new car, and suddenly the very same make
and model are everywhere. Behind every list of common traits,
and diagnostic criteria, there are stories. Rich, amazing stories of all real people. And I am one person with no authority
over the realm of Asperger other than how it relates to my story. When we suspected Asperger syndrome was
affecting our son, I jumped to action. Like with most things in my life,
I researched, I attended conferences, I had conversations, I probably asked
someway too personal questions, and I pushed I was determined to give him as much shelter from the storm as possible under the autism umbrella. I didn’t realize it at the time that as I was tirelessly working
to shape him for optimal functioning, I was also shaping myself. You see, even though was seemingly doing
pretty well, I was a person in recurring social conflict
who suffered rejection, routinely. My first principal threatened to fire me
if i didn’t go through his charm school. We didn’t know that we were dealing
with Asperger’s at the time he was intuitive, and he saw my potential. He was willing to look beyond my lack of
social finesse in the work place passed the first, second,
and third impression. And for several weeks we worked on
facial expressions, posture, body language, volume, tone of voice,
smiling, wait-time, which is practicing neutral non-reactive
facial expressions. I don’t know if you in the front row
can see by the brow lines, how well I’m doing in that department.
Neutral non-reactive! (Laughter) We worked on self versus other
impressions, perceptions. And it was the hardest mirror
I’ve ever turned on to myself. But I had to look closely because
how aspies see themselves, versus how others see them, is paramount
in developing social emotion intelligence. In the end, making a good forth
impression wasn’t enough to win over those particular colleagues, but the
experience certainly while going forward and I can say I’m ever grateful for it. In the early 2000s autism professional
development was all the rage for teachers expecting to come away with a few
more tools to use in the classroom with my students or at home with my son. Instead my toolkit was filling
with tools that had more to do with me. I listened to the personal stories
of some powerhouse spectrum folk. Doctor Steven Shore who is quoted here. Liane Holliday Willey, she’s author of
Pretending to Be Normal. So funny, I met her at a conference
I saw her at the conference. If you’ve ever been to a conference in a
room of 2000 people, full of aspergiens. Aspies, they all think
the speaker is talking just to them, and so of course at the break there is
a big line up to talk to her personally. So, I went to talk to her personally,
and she greeted me with this: “Hey aspie!” I was way before diagnosis so I was like:
“Oh, she thinks, I’m one of her… Liane Holliday Willey, and Rudy Simone,
she wrote Aspergirls, so that’s where aspergirl comes from.
And of course Temple Grandin. I’m a Temple Grandin groupie. I think I’ve seen her 4 times which is
a huge compliment to Temple Grandin because I’ve also seen
the Beatles Love in Vegas 4 times. (Laughter) Anyway through their personal stories I was able to connect the dots
in my own life. And I was diagnosed at the age of 43, despite the brow lines
that was not very long ago. (Laughter) Why bother? Why bother naming it at
the age of 43. What purpose would that serve? Well, why indeed? The pendulum has swung, from societies
of patrons and protégés to physicians, psychologists and patients,
and specialists of all kinds hyper-medicalising every little
personality quirk. Think about someone you know, who has
a narrow perseverative area of expertise, and poor social functioning.
Who comes to mind? A gamer, an IT specialist, an artist, a musician, a mathematician,
a scientist, a professor, a horse lover, an athlete, not likely
but possible. Aspies tend to be uncoordinated. Aspies are everywhere, your boss,
your doctor, your dentist, your lawyer. Ironically a lot of psychologists. Temple Grandin says, “that the first stone spear wasn’t invented
by the social yak-yaks sitting around a campfire.” And I agree with her. Probably, the fire wasn’t invented
by the social yak-yak either. I’d love it, if the umbrella makers could
agree on the varies specific descriptors for naming the various degrees of autism, but maybe the fact that there are
so many unique expressions is why they can’t agree. We do not yet live in a label-free world
that values unique individuals with complementary combinations of gifts
and deficit, so labels are necessary. We need labels in order to get our
systems needs met. People just feel more comfortable if they
know a chategory to put you in. Founders sure do. We all like to tick off our boxes. And since coming out aspie, I have been met with a level of grace,
and understanding that I’ve not known since early childhood. I can work with my system’s administrators
in ways to support my functioning. I can be unapologetic in setting
boundaries, freely giving on my gifts, and honestly
admitting my limitations. I’m no longer bound by the need to be
neurotypical. I can simply be me. So if you suspect you may be an aspie Asperger can be an confining course
or an expensive gift it can be gateway to deeper understanding
about self and others. It is not an excuse to remain stuck in
rigidity and intolerance. Learn to listen, learn to take criticism,
learn to reflect, and to apologise. Venture into the realm of the socially
savvy, now and then, where you will learn that the art of
conversation has much less to do with speaking, and more to do with
tossing the banter balloon, and being ok with leaving things unsaid. Learn to enjoy the social game even if you
feel like an observer most of the time. If you are a willing aspie allied. We make snap judgements of all people we
meet based on our first few impressions. The most socially challenged among us,
rely on trusted others to cultivate the opportunity to create that
forth impression. Don’t assume that the person
with the corner office wants to be alone, invite them out, again, and again,
and again, and again. And listen to their stories, even if they don’t come in the form of
a published book or a keynote address. And when you’re done listening
use your words. Don’t rely on the shift gays roll eyes
exasperated psi combo say: “Goodbye have a nice day.” And if they
compulsively start to clean out the staff-room fridge, please roll up
your sleeves and help them, and the next time you’re at a party
try having a nice chat on the coat pile. And finally to the umbrella makers. If we are going to continue to think of
the vast array of autism expressions as being under the autism umbrella,
then let’s all work towards this: umbrellas are designed
to be a one person tool. So, either come up with a better umbrella, or figure out a way to give each
individual who needs one, their very own. Thank you (Applause)

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About the Author: Sam Caldwell


  1. I have Autism. I learned how to deal with it by drowning out the world with Sonic the Hedgehog, My Little Pony, and Japanese culture ^_^ I picked up the sport of Kendo, and consistently beat my little brother. Someday, I'm going to move to glorious NIppon and become a Bushido Samurai!

  2. I love this talk – and wish I could have listened and learned even more – could easily have gone another 20 minutes and I'd be happy.

  3. I Liked the talk…but I had to turn the volume WAY down because it felt like she was screaming at the top of her lungs the whole time!

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