Ariane Zurcher discusses autism advocacy and the importance of inclusion ~ 203

Tim Villegas
Recording from my living room in beautiful Marietta, Georgia, you are listening to the Think Inclusive Podcast, Episode Six. I’m your host, Tim Villegas. Today I will be speaking with Ariane Zurcher, a Huffington Post blogger and the creator of the blog Emma’s Hope Book, a chronicle of sorts about her autistic daughter. She is one of the leading voices in the autism community, and I had the pleasure of visiting with her one evening in June. Ariane and I discuss what it was like to go from knowing nothing about autism when her daughter was first diagnosed to becoming a strong advocate for the autistic community. We briefly talk about inclusion and what that looks like in her family. So without further ado, let’s get to the Think Inclusive Podcast. Thanks for listening.

All right, joining me today on the Think Inclusive Podcast is Ariane Zurcher, who is a blogger—she’s a HuffPost blogger—and she also writes for her website, Emma’s Hope Book. We’ve connected over various social media. In fact, I’ve used some of her articles on thinkinclusive.us, and we’ve had a back-and-forth about inclusion—what is inclusion—and also about Emma. I’m very pleased and honored to have Ariane here on the Think Inclusive Podcast. Thank you for being here with me.

Ariane Zurcher
Oh, thanks so much for having me, Tim. Pleasure.

Tim Villegas
Great. Before we dive into the questions, I was curious about Emma. Is Emma her real name?

Ariane Zurcher
Yes.

Tim Villegas
Okay. Many autism family bloggers choose to change their children’s names. Was there a reason you chose to use Emma’s real name?

Ariane Zurcher
When I began blogging in 2010, I never thought anyone was going to read it. It was really just for my family and a couple of good friends. People were asking a lot of questions about how Emma was doing, and I got tired of writing the same emails. So I thought, I’ll streamline it and start a blog. Then it kind of took off. Honestly, if I started a blog today, I probably would change everyone’s names.

Tim Villegas
Have you experienced any negative effects because of that?

Ariane Zurcher
No. Even if I had changed everyone’s names, I would still ask my daughter if it’s okay to quote her or post a photo. Emma is very gregarious. She loves the limelight. If there’s a stage, she’s on it. If there’s a microphone, she’s speaking or singing. She loves an audience. At my 50th birthday party with almost 100 people, she got up and sang. She’s just without inhibitions—it’s a beautiful thing.

Tim Villegas
That is a beautiful thing. From the pictures you post, it really comes across that she enjoys it.

Ariane Zurcher
She absolutely loves it.

Tim Villegas
Going back to when you first started the blog and when she was first diagnosed—how old was she?

Ariane Zurcher
She was almost three. We got the diagnosis in September, and she turned three in January. We knew next to nothing about autism, although in retrospect, I see signs now.

Tim Villegas
What was your initial reaction to the diagnosis? Was it a medical diagnosis?

Ariane Zurcher
It was the end of a long series of tests—hearing tests and more. Eventually, we were advised to get a full evaluation through an agency in New York City. At one point, I asked one of the evaluators, “Do you think this could be autism?” I had been reading books at Barnes & Noble after each evaluation. Some things I read seemed to describe Emma—like a loss of language or a different way of speaking. She’d say a word, and we might never hear it again. It seemed regressive, though I see it differently now.

When I asked about autism, the therapist stopped everything and said, “Why do you say that?” I explained, and she said she needed to call in a psychologist. That surprised me—I thought autism was neurological, not psychological. The psychologist came, did a few things with Emma, and mostly talked to us. She said she was on the fence but thought Emma would benefit from early intervention. The best way to get that was with a PDD-NOS diagnosis. So we agreed.

Later, we got a phone call. The woman said, “I’m so sorry to be the one to tell you…” It was delivered like a tragedy. That moment was terrifying. It went from “maybe” to something that felt horrible. I felt devastated—not because of the diagnosis itself, but because of how it was presented. That started me down the road of thinking, “I’m going to learn everything I can about autism, and we’re going to fix this.”

Tim Villegas
That’s the reaction of many families. It certainly needs to be framed differently. If you could go back to that moment, what would have been most helpful?

Ariane Zurcher
I’ve written a couple of posts about this—kind of a wish list. First, I wouldn’t want to receive the information over the phone. I’d want a face-to-face meeting with several people, including an autistic person hired by the agency. I’d want clear explanations, handouts, and a follow-up plan. Presumption of competence would be key—important for any parent, regardless of neurology.

We need to avoid the fear-based language that’s so common. It’s unhelpful for everyone—especially our children. The fear-based model benefits companies making money off autism, but not children or parents. We have to fight that. That’s what I try to do with my blog—challenge the “us vs. them” mentality. I don’t buy it. I think it’s wrong.

Tim Villegas
Do you think parents who support certain organizations or write from a “tragic” perspective are just misguided?

Ariane Zurcher
No, I think they’ve been given a lot of misinformation from the start. I believed it too. The information is so biased and ingrained with prejudice that many people aren’t even aware of. If you told them it was prejudice, they’d be horrified. They’re not thinking about long-term effects like self-esteem, PTSD, depression, or addiction. They’re thinking, “I need to save my child.” Organizations like Autism Speaks have a specific agenda and make a lot of money from fear. They’ve tried to change, but not enough. If you dig into their site, the language is still there.

When any group is marginalized, all of society suffers. Autism has only recently come into public view, and we’re repeating the same mistakes we’ve made with other marginalized groups. Fear has always been a useful tool to push an agenda. Meanwhile, autistic people are living in a society that’s not accommodating, that’s prejudiced and misinformed.

Tim Villegas
We’re not afraid of controversy here. I’ve never had a personal connection with Autism Speaks, but I’ve read a lot from autistic individuals and families. What’s most interesting to me is the question of who the real autism experts are. Is it autistic people or the people who diagnose autism?

Ariane Zurcher
Autistic people need to be part of the process. They’ve completely transformed my understanding—not just of my daughter, but of autism and the world. They opened my eyes to inclusion. It never even occurred to me to think about inclusion for my daughter until my autistic friends talked to me about it.

The perception I had when Emma was first diagnosed is radically different from what I understand now. That transformation came directly from my interactions with autistic people—many of whom have become close friends. They’ve given of themselves so generously, simply because they’re kind and compassionate. There’s no obligation—they just care.

Tim Villegas
As an educator, I had a similar experience. My first job was as a behavior therapist doing discrete trial training. It wasn’t until I started listening to autistic individuals that my view of autism changed. Things started to make more sense.

I was just having a conversation about this with a colleague. Some parents say, “Those autistic people don’t speak for my child because my child doesn’t communicate.” But how autistic do you have to be for someone to listen to you? My friend Larkin, diagnosed at age two or three with “severe autism,” is now going to law school. Where’s the line? How can you say someone isn’t autistic enough to be heard?

Ariane Zurcher
There’s a lot of division and misunderstanding. Some parents feel attacked. I can dismantle how Emma was evaluated and why I’m not a proponent of ABA. But it’s one thing to tear something down—it’s equally important to offer alternatives.

When Emma was diagnosed, ABA was the only option. It was either that or nothing. Now there are more options.

Tim Villegas
Before I let you go, I wanted to ask about inclusion. How are you thinking about inclusion for Emma—in your family, school, and community?

Ariane Zurcher
I love the concept of inclusion. It fills me with hope. For me, inclusion is about life and the world. I want a society that welcomes my daughter as part of humanity. That’s the ideal. That’s what I hope for. That’s what I hope the future brings.

Tim Villegas
That’s going to conclude this edition of the Think Inclusive Podcast. I had to cut short some of the interview with Ariane due to technical difficulties. For more information about Ariane, you can follow her on Twitter at @EmmasHopeBook and visit her website, emmashopebook.com.

Remember, you can always find us on Twitter at @think_inclusive or on the web at thinkinclusive.us. Today’s show was produced by myself, talking into USB headphones using a newly refurbished MacBook Pro, GarageBand, and a Skype account. Bumper music by Jose Galvez with the song “Press,” available on iTunes. You can also subscribe to the Think Inclusive Podcast via the iTunes Music Store or podomatic.com—the largest community of independent podcasters on the planet.

From Marietta, Georgia, please join us again on the Think Inclusive Podcast. Thanks for your time and attention.