Monday, April 23, 2012

Emma and Autism Acceptance Month

We're featuring "Slice of Life" conversations with Autistics of all ages -- kids through adults -- throughout April's Autism Acceptance Month

Our goal is to help TPGA readers understand that autistic people are people who have interesting, complicated lives and who are as diverse and varied as any other population united by a label.

We are the people in each other's neighborhoods, and the more we know about each other -- the more visible autistic people and children are -- the more common autism acceptance will be. That is our hope.


Emma's mom Ariane Zurcher writes, "Emma was unable to answer most of these questions. Of the few she did answer verbally or by typing, I have put in quotation marks. For the others I found a combination of photographs and audio to accompany the questions. I answered a couple of the questions with my own thoughts, which are not meant to "speak" for Emma. Combined I hope this collage gives a small sample of Emma."

What is your name?

“My name is Emma.”

How old are you?

“I am ten.”

Do you have a website?

Ariane writes: Intended to replace the mass email updates Ariane felt obliged to periodically send to her family and friends, she began Emma’s Hope Book: www.emmashopebook.com. Since then it has grown and is read by people from all over the world. Ariane also blogs for the Huffington Post on autism and Emma: www.huffingtonpost.com/ariane-zurcher.

What would you like a one-sentence description of yourself to say?

Ariane writes: These photos are all of Emma and span from age one to ten years old.


Do you have any autistic superpowers? What are they?

Ariane writes: Not “super powers,” per se, but talent and a love of performing. This is Emma singing Que Sera Sera with our friend Alycea Ench:


What are some situations that make you happy?

Ariane writes: Emma typed the answer to this question. She wrote, 

“The things that make me happy are the same.”

When I asked her to tell me more, she typed, 

“Emma loves to dance. Emma loves music.”

What are some situations that make you sad or anxious?


Ariane writes: The note that went with this self-portrait was:

“Emma is sad. They want to turn it on. Mommy, I need help turning on Hubble Imax theatre.”

Are there specific topics you find particularly compelling?

Ariane writes: This is Emma’s work in progress – her beloved string.


What are your preferred ways to be social?

Ariane writes: Emma loves a party. She loves being among friends and while she isn't able to engage with others easily, she will do a "performance" given the opportunity to do so. A performance involves singing and dancing to her favorite songs.

What traits do you prize in a friend or companion?

Are there parts of your life you wish were easier?

Ariane writes: I will interject here, because Emma couldn’t answer these questions. I do not speak for Emma, so please know that these are my perceptions and not hers, but I think Emma would wish she didn’t feel such extreme pain when the air pressure changed. There are certain sounds that she finds almost impossible to tolerate, such as when the cuisinart is turned on. She typed, “I don’t like on, I like pulse, it doesn’t hurt.” She has had GI issues for the entire ten years of her life, which I think she would prefer she didn’t have.


And again, I’m guessing, but I think she would like to be able to articulate her feelings, thoughts and opinions better and more easily.

What’s the next big goal you have for yourself?

Ariane writes: Emma told me last week that -- "Go sleep over at Susan and cousin Peter's house." Since this is not something I can easily orchestrate, this falls under the "next big goal" heading. In addition my big goal for Emma is to continue helping her with reading comprehension and to work on her writing and typing, I have no idea if these are goals Emma shares, however. A year ago Emma could not form all the letters to the alphabet, so she is doing magnificently well.

What does bliss feel like to you?

Ariane writes: This is a series of photographs of Emma dancing to Maroon 5’s song Moves Like Jagger featuring Christina Aguilera. The turquoise thing in Emma’s hand is her string. It is a work in progress. This morning she covered it in red duct tape. See photographs above. 


“I’ve got the moves like Jagger…” and she did.


This is bliss. In its purest form.


Bliss.