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Ariane Zurcher
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Author of the blog, Emma's Hope Book, a blog written by Emma and her parents, Ariane Zurcher and Richard Long. It began as a document of what her parents thought to be true, but Emma has changed all that. Emma’s Hope Book is where Emma publishes her short stories, poems, insights, and opinions, particularly about autism.

Emma recently wrote, “my mind talks heavy thoughts, but my mouth talks silliness.” Emma writes by pointing to letters on a letter board and wishes people would “listen to my writing voice, but they listen to my talking voice instead.” Emma says her written words reflect what she intends to say better than when she attempts to speak.

Emma’s writing has changed everything her parents once believed and were told.

Ariane Zurcher blogs about design, art and life on her blog, Where Art & Life Meet

Ariane Zurcher's writing has been published in such magazines as Allure, XIst Century Magazine, Options, Elle, Aspen Magazine, The Aspen Times and on numerous blogs.

Award winning jewelry designer and winner of both the coveted 2009 Rising Star Award in Fine Jewelry and the 2010 AGTA Spectrum Award for Business/Day Wear, Ariane Zurcher was trained in the fine arts. A graduate of Parson’s School of Design, with graduate work in Creative Writing, Ariane began her career in the world of fashion, freelancing for design houses in London and New York, along with a stint at Elle Magazine.

New York based Ariane Zurcher Designs has been featured in leading fashion publications and blogs including, Italian Vogue, W Magazine,Women’s Wear Daily, In Style, L.A. Times Magazine, Modern Jeweler, StyleCaster and many others. Her website, www.arianezurcher.com also features charitable projects including benefit events for The Aspen Institute and The World Gold Council’s Leaves of Gold.

Entries by Ariane Zurcher

Conversing With 'Leading Man' Tracy Thresher

(0) Comments | Posted May 12, 2014 | 11:05 AM

Tracy Thresher and Larry Bissonnette are the stars of Wretches and Jabberers, the documentary film by Oscar award-winning and two-time Academy award-nominated filmmaker Gerardine Wurtzburg. Wretches and Jabberers follows two non-speaking autistic men (Tracy and Larry) as they travel the world, reaching out to other non-speaking autistic people...

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A Picture Day Moment

(0) Comments | Posted March 5, 2014 | 11:51 AM

Yesterday was picture day at Emma's school. Over the weekend, I went to the photographer's website, paid for the photographs online, chose which packet we wanted and then filled out the little envelope that had been sent home and placed it in Emma's back pack. Emma and I discussed picture...

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When Impairments Are Accommodated

(9) Comments | Posted July 26, 2013 | 5:29 PM

Click here to read an original op-ed from the TED speaker who inspired this post and watch the TEDTalk below.

Neil Harbisson's TEDTalk, "I Listen to Color", reminded me of a post I wrote on my blog about synesthesia where I quoted

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But What About Alex?

(7) Comments | Posted June 13, 2013 | 10:50 AM

Another autistic child has died... stabbed... multiple times in the chest. His mother has been charged with murder. Alex Spourdalakis was 14 years old.

The mother of a 14-year-old with severe autism who was found stabbed to death..." -- Daily Herald.com

But what about Alex?

The mother of...
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Non-Speaking Autistic Woman Writes Book

(0) Comments | Posted May 28, 2013 | 11:55 AM

Barb Rentenbach's funny, poignant and beautiful must-read book, I Might Be You: An Exploration of Autism and Connection, is now available as an audiobook.

(Full disclosure: Barb, who is non-speaking and autistic, asked me to be her voice for the audiobook, an honor I cannot begin...

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What I Wish I'd Been Made Aware of When My Daughter Was Diagnosed With Autism

(7) Comments | Posted April 16, 2013 | 10:44 AM

These are a few things I wish I'd been made aware of when my daughter was diagnosed nine years ago. I wish all those doctors, pediatricians, therapists and people who dedicate their lives to autism had given me this list, but did not. I believe our lives would have changed...

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Confessions of a Food Addict

(37) Comments | Posted January 30, 2013 | 9:02 AM

In my teens, through my 20s and halfway into my 30s, I used food the way a junkie uses heroin, only my "highs" didn't last as long. As a teenager, I realized there was nothing like eating large quantities of food to quell my discomfort, boredom, pain, happiness, sadness or...

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Try to Imagine

(4) Comments | Posted January 24, 2013 | 11:30 AM

Imagine...

Imagine from the moment you were born, every aspect of your being was evaluated and studied with a critical eye. Imagine that who you were, the way you spoke, moved and behaved was seen as wrong and in need of fixing. Imagine from an early age people talked...

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A Conversation With the Talented Writer, Blogger and All-Around Amazing Julia Bascom

(3) Comments | Posted January 9, 2013 | 2:30 PM

A year ago, I found Julia Bascom's blog, Just Stimming, and it changed my life. Julia is a beautiful writer who eloquently describes the joys and challenges of being autistic. Within the last year, Julia created the video "The Loud Hands Project." This video, together with Julia's blog,...

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Autism Is Not to Be Feared... Fear Is

(6) Comments | Posted December 19, 2012 | 5:57 PM

I used to work at an ad agency. One of the first things I learned was that there is one emotion that motivates people more reliably than any other: fear. Fear compels people to do a great many things they might not otherwise do.

Once we've become convinced that something...

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The Federal Response to Rising Rates of Autism: Two Autistics Spoke... Did Anyone Listen?

(32) Comments | Posted December 5, 2012 | 3:40 PM

C-Span covered "Lawmakers Look into Federal Response to Rising Rates of Autism" on Nov. 29, 2012. For those interested in seeing and hearing all three hours and 48 minutes of it, click here. You can also read the eight testimonies given by clicking here. Go to...

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I Love Being My Own Autistic Self: A Conversation With Landon Bryce

(6) Comments | Posted December 4, 2012 | 10:30 AM

Landon Bryce, teacher, writer, artist and animator, has written a terrific book about what it is to be autistic: I Love Being My Own Autistic Self. You may know Landon from his blog, ThAutcast, and his Facebook page, ThAutcast, but I Love Being My Own Autistic...

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An Interview With Peyton Goddard, a Non-Speaking Autistic, and Her Mother, Dianne Goddard

(26) Comments | Posted November 14, 2012 | 3:50 PM

Peyton Goddard and her mother, Dianne Goddard, wrote the book I Am Intelligent with Carol Cujec, Ph.D. It is a memoir: the story of a non-speaking autistic child thought to be severely "mentally retarded" who, as an adult at the age of 22, typed, "i am intlgent."

I asked...

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Ode to My Daughter

(1) Comments | Posted November 13, 2012 | 3:35 PM

Dearest One,

When you were first born I had an idea about you. It was an idea I have come back to, all these years later, an idea that was more right than wrong. You were very much your own person right from that first moment you drew breath. I...

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Non-Speaking (at Times) Autistic Provides Insight Into Communication Differences, Part II

(11) Comments | Posted October 26, 2012 | 3:20 PM

This is part two of an interview with Paula Durbin-Westby, an (at times) non-speaking autistic adult who made this YouTube video as an example of what happens when she tries to speak during periods when she cannot. To read part one click here.


AZ: Paula, can you talk more about the idea of language and thinking?

I have read more than one author who opines that without language there is no thought. Nothing could be farther from the truth. Language includes both written and spoken words, as well as picture-based communication systems like PECS. Not talking (and also not writing) does not equate with "not being able to think," "being lost in an unknown world" or anything other than specifically not being able to talk. For some people it could mean a lack of focus on the present moment (how many people are fully present in each moment anyway?) or not being able to think in words, which is another one of my reasons for not talking. But it is not, generally speaking, accurate to assume that because a person can't talk, they can't think. You wouldn't look at someone who has a tracheostomy tube and go "Oh wow. That person can't think!"

AZ: Were you surprised by the comments you received after you posted your video online?

I was amazed, and also a bit dismayed, that people, including some professionals, really do not understand that being able to produce speech and being able to think are not related. The most disconcerting comments were from people who were told by professionals that it was not possible for their child (or themselves) to lose speech. When assumptions like these are made, opportunities for meaningful communication with autistic children and adults are lost, including opportunities for the further learning of language (not necessarily speech) capabilities. A couple of parents indicated that they were planning to forward the video to professionals or family members, in order to help explain that, yes, we can lose speech temporarily, or need to use other-than-speech capabilities and technologies at times.

I was also surprised that my video was one of a few, or perhaps the only, video out there showing someone who usually speaks having periods of not being able to. Some autistic people wrote in saying that I had accurately captured their experiences. The number of films by or about mostly non-speaking people is growing, but to my knowledge there are not videos of people who have intermittent speech. I encourage more autistics to post videos and write articles about speech loss/intermittent speech/non-speaking times. We learn so much from each other, in ways that are different from "therapy" or "intervention." It is important to have a body of knowledge on this topic that we ourselves have created and that we can consult, and that can also assist non-autistic parents, educators, and professionals. I don't know that there is a profound difference in the reasons for not speaking between autistics who do not speak at all and those of us who lose speech temporarily or have other speaking difficulties. I tend to think that there isn't, and I can't always rely on experts to provide the answer, given that so many of them still do not realize the phenomenon exists.

Several people asked me about what it was like to be "locked in a non-verbal world," wondering if I were in some sort of dream state or alternative universe at those times. Actually, I just can't talk. I assume that my overall differences in my processing of the world as an autistic person are still there, but my own experience of it is that I am experiencing things just the same as I usually do, although it might be different than how a non-autistic person experiences things.

I was glad to see these questions, as it gave me an opportunity to think about how to explain the connections between speech and cognition to a broader audience. Again, if an autistic person can hear and process speech, they are probably able to understand it, even if they cannot speak, and even if they cannot (yet?) use writing technologies. I tend to assume that autistics (and people with other communication disabilities) do comprehend what is going on around them/us, in our own ways. In your last piece on The Huffington Post, you addressed Henry Frost's fight for inclusion in his own school district. Several commenters averred that if Henry can't talk, he is not intelligent, and that someone is writing for him. People just can't seem to grasp that someone could be able to write and use language in other-than-speaking modes. Think about it; you probably aren't talking and typing at the same time. Henry does not speak, but can type. I can do both, but at times I cannot speak. All three of us (the non-autistic speaking person, the person who does not speak, and the person who has intermittent speech) can type, but during those times, not one of us is yakking away!

For this interview's video, I have added another segment that I made on the same day I made the first video. In it I hold up a sign that says "All those blog entries I write? I wrote them myself," and then "So many non-verbal people get that 'Oh, she had someone do that for her' stuff. Just had to say that." I was thinking about people who don't speak at all, and how their intelligence is poorly understood, questioned, or disrespected. I am privileged because people can see that I do both, and since I can speak, I will often be presumed to be more intelligent than someone who can't, even if it's not true.

AZ: What is it like when you're unable to speak while in public and are expected to?

It's a bit nerve-wracking, but only in situations where people do not know me well and are expecting that I can speak like a non-autistic person. I try to anticipate what I will need to be able to communicate at those times, but I can't always build in my own supports. When I am with friends, it's no big deal if I can't talk or have intermittent or halting speech, but in work situations it's more difficult for me to feel calm. It's an ongoing process for non-disabled people to learn about communication differences and to anticipate them so that autistics and other people with communication disabilities aren't doing most or all of the work to create our own accommodations. For successful communication to occur, all communication partners should share responsibility.

AZ: How do people react to you?

Really, I mostly don't get reactions, because often the times that I can't speak coincide with the other person continuing to talk, maybe because they think I don't have anything to say, or they think, "Well, if she's not going to talk, I will!" I do get all kinds of reactions, from total acceptance to "You could if you wanted to -- try harder" kind of thing that made me feel sad when I was making the video. Sometimes people don't believe me when I say (in speech or writing!) that I have trouble talking. This video ought to make that clear! I have to be very precise and say that I mean not being able to talk at all. I have learned that "trouble talking" might mean not saying the right thing, or stage fright, and "I can't talk right now" can mean "I am too busy to deal with you" rather than that I literally am unable to speak with words coming out of my mouth! I have had a few mixups when people did not know I meant "I can't talk right now" very literally. Sometimes people just don't believe me and think I'm making it up. I'm not sure why they would think I would go to that much trouble! There are also people who have never heard me stutter, who think that I don't, even though I tell them I do. I have a video of that, as well, and will post it at some point, mostly to show people who know me the different ways I can or can't access speech.

AZ: Are there things that help you speak when you are not able to or having difficulty?

I mostly just have to wait. I don't particularly want to talk a lot, but I need to. It's just one of those things that is expected, and it is expected that if I can do it some of the time, I can do it all of the time. It might seem that someone who can speak but loses speech at times would want to find strategies to prevent speech loss, but I often welcome not being able to talk. It gives me a break from the exhausting task of speech production. I also get very overloaded by hearing other people talk, as it challenges my auditory processing abilities and I can only process talking for a short time. If other people, whether or not they can speak, would use text-based communication with me, I could get a lot more accomplished. If writing is not that person's strongest form of communication, it will be a limit for that person, but we should not be expected to always accommodate "talkers" and not the other way around. It does take extra effort on my part because people can't tell just from looking at me that I am a person who sometimes can't access speech.

Ideally, we could take turns using each person's communication strengths and weaknesses. It's an ongoing process of learning, both how people with communication disabilities process and use language, and autistic and other people with disabilities learning how to advocate for communication accommodations for ourselves and others, taking into consideration the communication needs and limitations of nondisabled people. Communication is definitely a two-way (or more) street.

Paula and her son's messages to each other:

2012-10-21-PaulaCoby.jpg

2012-10-21-PaulaDWestby.jpg

Ariane Zurcher can be found on her blog: Emma's Hope Book.

For Emma's Hope Book Facebook page click here.

For more by Ariane Zurcher, click here.

For more on autism, click...

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Non-Speaking (at Times) Autistic Provides Insight Into Communication Differences, Part I

(10) Comments | Posted October 24, 2012 | 11:33 AM

AZ: Paula, you've described yourself as a "non-speaking (at times) autistic."

Yes. I think the phrase "non-speaking at times" captures my experience and also that of others who do have speech capabilities but can't always access them. I could also say "partially speaking" or "intermittent speaker." Just because one can...

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Henry's Fight for Inclusion

(177) Comments | Posted October 15, 2012 | 10:55 AM

A few weeks ago Henry Frost sent me this video about his desire to attend the public school close to his home. He wrote: "I would like to be included and learn with friends my age and where I live." He also wrote, "I am a self advocate. I want...

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Performer, Singer, Mother, Wife, Friend and Autistic: An Interview With Chou Chou

(2) Comments | Posted September 26, 2012 | 11:10 AM

I met Chou Chou last spring when she left a comment on my blog, Emma's Hope Book. She wrote, "I love your writing, and find your darling Emma startlingly like me as a child. I am a happy, successful, 58-year-old autistic woman. I just wanted to say you...

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'Repetition Is a Response to Extreme Fear' -- A Conversation With the Markrams

(1) Comments | Posted September 20, 2012 | 12:20 PM

At the ICare4Autism Conference, held in Jerusalem Aug. 1 and 2, I had the opportunity to speak with the neuroscientist team Dr. Henry and Dr. Kamila Markram, who created The Intense World Theory for Autism. Henry Markram is also director of Blue Brain and...

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An Interview With Amy Sequenzia, a Non-Speaking Autistic Writer and Poet

(4) Comments | Posted September 11, 2012 | 3:34 PM

Amy Sequenzia, a non-speaking autistic self-advocate, poet and writer, agreed to an interview with me. Amy is someone whose work I have been following since I met her this past spring. Her powerful book of poems, My Voice: Autism, Life and Dreams, can be purchased by contacting Amy

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