“I want to write about being an Autistic girl. Sometimes difference isn’t easy. Easiest is to be like everyone else. Trying to fit in when you act and talk like me only makes everyone more aware of how I am not the same. Blending in isn’t an option for me. I stand out anyway.“ ~ Emma Zurcher-Long
Emma’s words, written last night, reminded me of the TED talk Sir Ken Robinson gave eight years ago, in 2006. A talk that more than 26 MILLION people have watched on the TED channel, more than 6 million on Youtube…
“…If you’re not prepared to be wrong, you’ll never come up with anything original.” ~ Sir Ken Robinson
He also said later in this same talk, “…the consequence is that many highly talented, brilliant, creative people think they’re not, because the thing they were good at at school wasn’t valued, or was actually stigmatized. And I think we can’t afford to go on that way.”
He wasn’t referring to children with a different neurology. He was referring to the NON autistic population! Now think about his words in relation to those with a different neurology… “wasn’t valued, or was actually stigmatized.” THIS, this is something I think about all the time. What if… what if we lived in a society that actually valued Autistic neurology?
“We need to radically rethink our view of intelligence,” Sir Ken Robinson said. He also said, “…creativity — which I define as the process of having original ideas that have value — more often than not comes about through the interaction of different disciplinary ways of seeing things.” An Autistic brain is all about seeing things differently from the majority of the population. Why are we trying to temper this? Why do we spend so much time, energy, effort and money on trying to make Autistic people like their NON autistic peers? Doesn’t this seem like a massive waste of time? It does to me. And this isn’t even taking into account the trauma we are inflicting on a group of people who canNOT be like their non autistic peers even if they were motivated to be.
Sir Ken Robinson goes on to tell a story about a girl who is failing in school. Her teachers are complaining, she can’t stop fidgeting, she’s doing poorly in all subjects and the mother takes her to a specialist who after listening to all the things the girl is doing wrong, tells the girl he has to speak with her mother privately and together they leave the room, but not before he turns on the radio. “And when they got out the room, he said to her mother, “Just stand and watch her.” And the minute they left the room, she was on her feet, moving to the music. And they watched for a few minutes and he turned to her mother and said, “Mrs. Lynne, Gillian isn’t sick; she’s a dancer. Take her to a dance school.”
That girl, Gillian went on to graduate from the Royal Ballet School “and founded her own company — the Gillian Lynne Dance Company — met Andrew Lloyd Weber. She’s been responsible for some of the most successful musical theater productions in history.”
I’m not saying all of our kids will become famous dancers, heading up their own companies, but what I AM saying is that it’s time to rethink how we think about autism and our Autistic children who will one day grow up to be Autistic adults. We can crush them with the insistence they conform, despite all evidence suggesting they cannot or we can encourage them to flourish. We can insist they communicate like their non autistic peers and subject them to endless hours of therapies created to train them in how to be indistinguishable from their peers. OR we can find other ways, creative ways to help them be all they can be.
Sir Ken Robinson ends his talk, which I hope you’ll watch if you haven’t already, by talking about the gift of human imagination and using it wisely. He says, “the only way we’ll do it is by seeing our creative capacities for the richness they are and seeing our children for the hope that they are.”
“Seeing our children for the hope that they are.”
This, it seems to me, is at the crux of everything. Every single child born, no matter how different they may be from the majority of people, must be approached with this in mind.
“Blending in isn’t an option for me. I stand out anyway.” ~ Emma Zurcher-Long
Contemplation
Emma's Hope Book 
Here, here! Best post yet!
Lovely post!
Thanks for the encouragement and insights so I can let go all the way in letting my stand out as different if he wants to. And it’s a dance– him learning more about “the world” like how he can match his gestures to the content of a poem in a way his mostly neuro audience could get, and my part is to relax when he chooses to integrate his own stimmy gestures into the poem. Kind of like–“Don’t worry bout a thing… cause every little thing is gonna be alright.” Anxiety is a bit like a closed door beyond which is the magical universe of acceptance.
“Anxiety is a bit like a closed door beyond which is the magical universe of acceptance.” Wonderful!
You do good! 🙂
Hey there, friend! 🙂
I have a 4yo who is currently enthralled with pivot and hinge joints of every kind. Popular belief would label it non typical repetitive behavior and attempt to redirect and end this fascination. He opens and closes studying intently from every conceivable angle…I have no clue whatsoever what he is studying, and maybe its as simple as he just likes the way it looks…but also maybe his little mind will someday use his studies to engineer a better joint. My point is that we spend so much time teaching children to think like everyone else, to follow the standard teachings and procedures…but I’d wager a guess that nothing that has been created on this earth was created by people who thought inside the box and followed previously accepted logic. So i agree its rediculous and counter-productive thinking.
We now know Temple Grandin was fascinated with the way things moved and look where her interests took her!
My point exactly…things like scissors are limited to supervised (he has playdoh scissors he gets to carry around otherwise) so some limits have to be imposed at times, but plan to look for like a kids tool set if i can find one sturdy enough. Unfortunately we learned w the kitchen gadgets getting him his own doesnt negate him wanting every one in the house…my garlic press is still missing lol
Oh, I so loved this post! Thank you for putting into words what I’ve longed for — thank you! Everything for our children seems to focused on “fixing” them to fit into a nonautistic ideal. I wish there were places, summer camps, etc. where autistic children and families could gather and let our children enjoy each other and see they are not so different and not so alone. My daughter’s goals for school is to play with other children. She enjoys her homeschool and has learned so much, but she wants to play with children. And unfortunately there is no way it seems to do that on a regular basis except in a school, where her strengths and her interests will have to fit into the box that’s already been created. All the groups put together for NT kids already put our kids at the disadvantage of being outside and having to fit. It gets frustrating. We are hoping a small private school here where she can go just for a few hours and focus on play as she wishes will work out; maybe in a Montessori environment they will let her be herself and let her focus on her goals for herself. Keep your fingers crossed for us.
Off topic: Ariane, I would love to chat with you sometime about RPM and Austin. I’ve been working on RPM with my daughter and we hope to do the Austin session maybe next year. May I email you sometime?
And thank you and Emma for all you do. I don’t often comment, but I look forward every morning to reading your blog. It helps me set my mind for the day. And Emma’s words yesterday resonated with us so much. Please thank your wonderful daughter for us; we think of Emma as our long-distance mentor.
*Hugs*
Desi
oh Desi – “we think of Emma as our long-distance mentor.” – love that!
Yes, email me any time. emmashopeblog@gmail.com
This was lovely. It is very sad (regardless of neurology) to feel like you are not “right” because of who you are. It takes a lot of work and energy to push back against that. Sometimes the weight of it is crushing and you can’t hold up. If you’re lucky, you rediscover your true self, dig out, and shine – which takes a lot of work and energy 😉 but it is so worth it when you find the people who “get” you. Emma is so lovely, and so are you.
As I read this Patricia, I reflected on my own feelings of being “crushed” and not “right.” It was awful. Just awful. I never felt that I “fit in.” And here’s where it all gets really complicated, because I grew up believing those things other people said about me, I then began to behave in those very ways, thus “proving” to myself and the world that I really was that way. To unlearn those incredibly destructive messages can take decades, or for some of us a lifetime to undo and some of us may never be able to completely undo them. They cause us untold suffering. I can honestly say, the suffering I experience today can almost all be traced back to those times when I was so young and people told me who and what I was.
“Blending in” is not a heroic virtue. Groups that value conformity above all else are the most authoritarian and the least tolerant. I’ve always considered myself to be a non-conformist and most of my friends are as well. I like weirdness and oddballs. Even so, I have on many, many occasions encouraged Emma to try and “blend in” better. My reasoning? I don’t want people to stare at her, or laugh at her, or tease her, or call her names. I want to protect her from all that pain–from any form of bullying or derision.
Since Emma began writing, she has probably written about being treated poorly by non-autistic people more than any other topic. She clearly hates being underestimated, thought of less intelligent, “being looked at like garbage.”
As she has grown older, and bigger (she’s a big girl for her age), Emma’s unusual speech and body movements have drawn more and more negative attention. When we went out to the Museum of Natural History on Sunday it was very crowded, so we were in close physical proximity with hundreds, if not thousands of people. Emma loves to ride in elevators so we ride a LOT of elevators with a lot of people. Emma rarely, if ever, rides quietly or placidly. She points to the floor buttons and shouts “Staff Only!”
She makes gleeful whooping sounds when we go up and down glass elevators. She is simply having fun and being herself.
And all I can do is seethe as I watch people stare at her and roil their eyes and whisper. I want to shout, “What the fuck are you looking at?!” but I often look at Emma and put my finger up to my lips–trying to get her to turn down the volume or not say anything at all. After we get out, I might say to her, “when you do things like that, you really draw attention to yourself and then people stare at you. You’ve said that you don’t like people staring at you, so not talking loudly or shouting in closed places is one way to try.”
I’m admitting all this stuff because I need to be honest and not act like I’ve got my shit together, like I’m some kind of poster “autism dad.” I do the best I can, and try to make the best decisions, but this is one area that I constantly struggle with. I so want to HELP Emma. I so want to PROTECT her. And I also don’t want to hurt her by repressing her self-expression.
This stuff is very confusing to me. What’s “the right thing to do?” Keep my mouth shut? That’s almost always a good suggestion for someone like me. But it doesn’t solve the bigger problem as to how I might be truly helpful to Emma in navigating social situations. Should I make any attempt at all to talk about social mores and point out what is considered “socially acceptable?” I think it is necessary at times. We are all expected to wear clothes in public. What kind of clothes? Well, they should be weather-appropriate. But any “rules” or “suggestions” beyond that point probably do more to crush her spirit than avoid unwanted attention.
Emma wanted to wear a fancy party dress to school yesterday. I told her it was too nice and she should wear something more appropriate for school. As soon as Emma got home, she put on her party dress, cranked up the music and danced her butt off.
I told Ariane about my morning “clothes cop” activities and she pointed out that the party dress wasn’t any more expensive than her other dresses. “But it’s so fancy for school. I’m worried that kids will stare at her or tease her,” I argued.
I think Ariane said something like “kids stare at her anyway” or “So what?” or something else that basically told me, “just let her wear the friggin’ party dress if she wants.”
She wore the friggin’ party dress to school today.
I had to smile that she was allowed to wear her red “party” dress to school this morning. (For those of you reading this, I often get up very early to get to my studio, so I don’t see what the kids are wearing to school until they get home.) Emma and I are a lot alike in this regard. I LOVED dressing up. I always wanted to wear things to school that I often was not allowed to wear, sometimes because it was impractical or because the school would not have allowed it – like the time I wanted to wear short cut-offs and a white crop top) but sometimes because it would have raised eyebrows. I would have been given “the look” but here’s the thing, I wouldn’t have cared. The looks usually didn’t bother me, but the comments crushed me.
I think it’s important to talk about social expectations and rules. I think it’s the same with any topic, whether that’s about religion, political views, what is considered polite and why, etc. But when we impose OUR views on our children, well then it’s more problematic. I mean, we don’t tell our kids whether they should believe in god or what political party they should side with or any of the other things that come up in life. We’ve always agreed that we give our kids information and encourage them to ask questions and listen to lots of points of view before making their own decisions.
PS I swear, Richard and I really do actually speak to each other in real life. I swear. Right, Richard? Right? 🙂
Absolutely right. What did you say?
Richard, these are the exact thoughts that go through my head with my son. He is only 5, but the older he gets the more he :”stands out”. I am usually at a loss as what to do when he is acting differently and people either comment or give me the “look”. Do I say something? Do I bring up autism? I don’t like to in those situations, because I don’t want my son to hear me talking about autism and something “bad” in the same sentence (like…he’s autistic and this room is too loud for him and he is getting upset). Do I try to say something to my son to get him to act more “appropriately”? It’s tough. Usually I just give people who are rude enough to stare the mommy death glare and that ends it.
Yes, I’m a ninja stinkeye master too. I give as good as Emma gets.
You can’t avoid teaching Emma what is or isn’t socially acceptable. You are going to do it. She will decide how much of it she is going to comply with and you will eventually find a balance that you can both live with. Don’t feel guilty or feel that you are clipping her wings. When we visit another country with a different language and culture, learning the customs whether we like the customs or not, can be a matter of survival. For example, Katrina has had a broken leg in the past, so whenever she sees a person in shorts, she wants to put her hands on their legs. She also rips the legs off of barbie dolls holds them upside down and stares at them. Touching other people’s legs is a no no. Fixating on Barbie doll legs might look a little strange but it doesn’t hurt anything. Still if we are going to church or shopping, we might ask her to her leave the Barbie doll leg in the car and use a different fixating object like a bracelet or a crystal that she seems to enjoy as much. Some people are going to stare or be rude. Sometimes, it will hurt Emma’s feelings, or your feelings. For me, it helps to think that the mocking person is just ignorant, and if they knew better they would behave better. Sometimes I actually try to teach them a lesson in politeness, and sometimes it works. I try not to let Katrina see if I am upset ( she is very good at picking up my attitude and that affects her stress level). Since Katrina doesn’t really speak up for herself, I still have to be careful speaking up for her, because my intervention can embarrass her more than putting up with the other person’s ignorance. I try to think in my mind “Whatever!” Everyone isn’t going to like our kids or accept them. Most of the people we meet are kind, helpful, and willing to learn. We can’t let the stinkers spoil our fun!
Thanks Marie 🙂
Richard, I am 58 years old, NT as far as I know, but pathologically self-conscious; self-consciousness prevents me from living! I wish above all else that my parents had taught me to find my AUTHENTIC inner self, and LIVE it! But even more than that, to join in with those that sought to crush me; laugh along, smile at those that stare, wink, wave, whatever, but NEVER to feel sorry for me! Feeling sorry for me, I realised way too far down the line, was tantemount to agreeing that what others said and did that hurt so bad, was in fact true! Instead of protecting me, in other words, it would have awesome to have learned how NOT to be a victim! CELEBRATE difference!! Be sure any behaviour is truly inappropriate before discussing its inappropriateness!
for the record, Laura and I had a blast the day we went to the museum with A and E, and would love to go again! Sundays are, however, …crowded.
YES! I love that talk by Ken Robinson, and it was directly instrumental to my thinking about how I wish we were approaching neurodivergent kids.
It doesn’t mean every disabled kid is a hidden genius or artistic prodigy. It means that people do better when supported in their natural strengths.
I agree. Exactly!
Accepting, even celebrating differences means so much to me. I love this post. 🙂
I am a mess of inhibitions, the origins of most of which I am ignorant about. However I strongly suspect that a lot of it is the suite of behavioral rules I acquired as I was growing up. This would mean that I am still constrained by the memories of of people’s reactions from over 30 years ago, by being conditioned to fit in.
It saddens me sometimes that I carry these fears that often prevent me from acting in a natural, innocent way. Especially because I have had such fun those times when I have overcome the inhibitions. Jumping in puddles. Running through the middle of town with a friend, spraying silly string at each other (her children thought it was awesome too).
Ariane! This is so beautiful! Thank you to you and Emma for your thoughtful words. I can’t wait to share them with my clients who are also using RPM. To me, it is the differences among people that make our world so interesting!
I can’t really blend in. The older I get, the less I want to. If I had wings, I’d flaunt those things.
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