Coming of Age in Columbus: Director Alexandra Shiva on ‘How to Dance in Ohio’

Navigating the turbulent transition to adulthood is hard for any teenager. But coming of age as a young person with autism — America’s fastest-growing developmental disorder — is particularly daunting. In How to Dance in Ohio, director Alexandra Shiva (Bombay Eunuch, Stagedoor) follows Marideth, Caroline, and Jessica, three young women on the autism spectrum, as they work with psychologist Dr. Emilio Amigo of Amigo Family Counseling to prepare for a spring formal dance. Through the stories of these girls and other young adults with autism, Shiva reveals the struggles and joys of being different — and the universal challenges of growing up — with intimacy, warmth, and humor. The film, which premiered at Sundance in January and won the Audience Award at Full Frame 2015, broadcasts on HBO on October 26.

Shiva recently spoke with Full Frame about working with subjects on the spectrum, instilling the film with humor, and shooting during difficult moments.

What led you to make this film? What was your point of connection to the subject of autism?

My friend has a 16-year-old daughter on the spectrum, and she’d tell me these stories about how her daughter was finding it so frightening and disorienting to be going through puberty and having her body changing in so many ways. There’s a lot of talk about real little kids with autism, but I realized that I wanted to find a way to tell a story about this young woman coming of age. The issue I had is that my friend’s daughter is nonverbal, which would mean a story about her would be told through her parents and health care professionals, and I didn’t want that.

I began researching autism, and in my research I went to a conference and met this incredible woman who talked about her own experience of being on the spectrum in a way that I had never heard before. And she said, “You have to come and meet my doctor in Columbus, Ohio.” So I went to Columbus and met Dr. Amigo at Amigo Family Counseling and met a lot of people who ended up in the movie. Dr. Amigo started telling me about all the different kinds of things he likes to do in therapy and how unorthodox he is. He said, “I’m doing a big dance in April, and it’s going to be in a nightclub, and we’re going to spend three months in group therapy preparing them for the dance. That’s going to be the real work; the dance is just going to be the part at the end.” And I thought, there’s the story. That’s the most relatable way to bring an audience in to the experience of being on the spectrum: to follow alongside subjects as they’re going through this process of preparation. Everybody can relate to being scared of going somewhere new, of talking with someone new. Everyone has felt those feelings at some point; these subjects simply have those feelings in a more magnified way.

How did you narrow in on Marideth, Caroline, and Jessica as the three subjects on whom you wanted to focus?

We initially shot four young women and one older woman — the woman I met at the conference — and then four young men. But while we were shooting, we really did know that our focus was narrowing. I remember I would come home and say to my husband, “There’s just something about these three stories in particular that is so compelling, but I really want to represent as many people as I can.” And he kept saying, “Why would you go away from what your footage is telling you and what the story is telling you? Go toward it, don’t go away from it; find another way to incorporate everyone.”

So that’s why we decided to include those interstitial sections in which other members of the Amigo Family Counseling community talk about their interests and struggles. Once we landed on that device, I felt like I could let go and focus in on the stories of Marideth, Caroline, and Jessica. I liked the girls being the central players and the boys serving as supporting characters — that seemed to fit in with the idea of a prom. There’s also the fact that the three girls represent different stages on the continuum of coming of age: Marideth’s 16 and she’s in high school, Caroline’s 19 and she’s trying to go to college, and Jessica’s 22 and trying to be out in the world. That worked really well, too.

What was the collaborative process with Dr. Amigo like, both in terms of getting subjects on board and navigating the physical process of filming?

We had a really interesting process with Dr. Amigo. We had a lot of conversations with him about how to make sure that we didn’t impact treatment negatively. That was first and foremost for him. And we talked through what the film was going to be about and why we wanted to make it. Once I think he felt comfortable with the project, he started talking to the clients about it — he calls the people who go to his counseling center “clients.” He basically decided that there were different levels of participation from which the clients could choose. The clients could choose not to participate at all in the film if they didn’t want to. Or they could say that they were fine being filmed, but only in group therapy. Or they could say, “I’m fine with being filmed in group therapy, and I will do an interview.” And then the final level was for those who were open to us going home with them and filming there. We had a very complex spreadsheet of every client’s agreed-upon level of participation — and some of that changed over time. There were certainly people who started out wanting to participate minimally who eventually wanted to be more involved; it never went the other way around.

On the very first day we got to Columbus to start shooting, we had a town hall meeting set up by Dr. Amigo. We talked to all of the clients who were interested in participating, as well as their parents and guardians. Everybody came and asked questions, and I gave a presentation and introduced the members of our production team. And then the whole first week we were there, we sat in a room all day long, and four or five clients would come in at a time, and we would run through everything with them again. I would show them where I was planning to be during their therapy sessions — usually crouched away from view underneath the desk, holding a monitor. Leila, our director of photography, would show them the camera, and they would touch it and ask her questions. Jessica came in to talk to us with a clipboard of ten pages of notes and questions, which immediately got our interest. So we started to know pretty quickly on whom we wanted to focus — the subjects would just sort of present themselves in that way.

How did you explain to the clients your vision for the project?

We always said that we really wanted to focus on all of the preparation that went into them going to the dance. That was going to be the framework. We said we weren’t sure what was going to be within that framework — that was going to be up to them — but we wanted to focus on this process that they were going through. We also told them that the goal was for them actually to speak for themselves. It was really interesting: we were in Columbus after the school shooting in Newtown, and there was all of this news reporting going on about the shooter Adam Lanza’s Asperger’s and whether it had any bearing on what had happened. And a couple of young men at Amigo Family Counseling brought that up. They talked about how people have all sorts of misconceptions about individuals on the autism spectrum, and that was part of why they were interested in participating.

There’s a really great moment in the film when you’re interviewing Marideth. You ask her a follow-up question, she pauses for a beat, and then she goes, “I don’t like that question” and refuses to answer. I imagine the process of conducting interviews with the clients was pretty unique.

Well, we sent the questions to everyone beforehand, and everyone had the exact same questions. We couldn’t really deviate from that; that was very uncomfortable for them. Sometimes I’d ask a question and clients would expand upon their answers, but I wouldn’t diverge from the list of five or six questions that I had sent around. And actually, sometimes if I skipped a question, clients would look down at their notes and say, “You missed a question.”

There are definitely some people on the spectrum with whom you can have more dialogue, but with Marideth, if I asked a question, I’d often get a one-word answer — she’d stick pretty closely to a script. Or she would totally change the subject and say, “Have you ever been to Alaska? What’s Thailand like? I really want to go to Thailand. Do they speak Spanish in Mexico?” She would just go off like that, and it was really, really fascinating.

Re-watching the film, I was struck by the amount of humor in it. There are so many moments and one-liners by the subjects that are disarmingly candid and sweetly vulnerable and really, really funny. But I never feel bad about laughing; it never feels like we’re making fun of the clients by doing so. Where do you think that distinction lies?

The way that we have understood it — because it was a big conversation during editing — is that the audience can never, ever, ever be laughing at the clients. And at the same time, we want audiences to feel like they have permission to laugh at things that are funny. It was really important for this movie to provide audiences with a way in; we didn’t want it to be a film about Autism with a capital A, where everything’s dire and hard. That’s why we chose to make the first laugh come so early on, in that scene at the top when Amigo is asking, “Who wants to go first? Who wants to go last?” in group therapy. Dr. Amigo works with humor a lot, and we followed his rhythms there.

But I think that distinction that you’re talking about comes from agency. I think that every single time there’s something funny in this movie that makes audiences laugh, it also makes everybody in Amigo Family Counseling laugh. And that’s because they’re in on it. Whatever we think is funny, they’re totally in on the joke, and they’re doing it on purpose on some level. They’re more self-aware than we would give them credit for. So there’s just an agency piece; I think that’s the best way to describe it.

The one place where the community doesn’t laugh — where the neurotypical people laugh and the non-neurotypicals don’t — is when Jessica does not understand why Tommy’s not available to be her date for the dance. And I think it’s because Jessica truly does not understand, and there’s a concreteness to that exchange. We laugh because we’ve all been there — wanting to go out with someone who doesn’t want to go out with us. But it’s not funny to her, because she’s going, “I don’t understand. I still don’t understand. I thought he was available.” And I think people on the spectrum see that and identify with her lack of comprehension, so that moment isn’t funny to them.

I wanted to know if you could talk about the scene in which Jessica is reprimanded by her boss, Dr. Todd, and has a very emotional reaction. That is a truly difficult scene to watch. Was it hard to keep filming during such an intense exchange?

It was very hard. And it was a hard moment to know whether or not to turn off the camera. But everybody who participated in the film knew that they could ask us to turn off the camera at any point, and nobody asked us to do so, so we kept filming. It was very intense, and we didn’t know what was going to happen. Jessica had had some issue at work the day before, when we hadn’t been there shooting, so Dr. Todd sitting her down to talk about her behavior was sort of a cumulative result.

I think what’s hard about that scene is that Dr. Todd comes across as particularly harsh to most people. Not everyone thinks so — some people say, “She’s just being a boss; that’s what a boss is.” So one of the main reasons we included that scene in the film is because so much of what she says to Jessica and so much of what you’re witnessing is exactly why it’s so difficult for someone on the spectrum to have a job. The reality is that a boss isn’t going to understand you, and we’ve all had bosses that are like that. So even though that scene is so hard to watch, it’s incredibly important to see.

Dr. Todd has seen the movie, and she is perfectly fine with how she comes across. She feels like she was using the tools that she had available to try to teach Jessica that the world isn’t black and white, that there’s a distinction between work ethic and work etiquette, and that Jessica needs to be aware of how she comes across sometimes. But that scene is certainly a bit of a lightning rod. When Jessica saw the film for the first time before Sundance, she had a really hard time watching that part. She basically asked, “Was I bad?” And I think her mom helped her understand and reframe what had happened, to recognize that she had really taken care of herself and advocated for herself in that moment.

I read that really amazing piece that Hilton Als wrote for The New Yorker about you, in which he describes your films as ripping “the tape off the mouths of those who have been held hostage by circumstances beyond their control.”

Oh my God. That was such an incredible piece.

And that’s such an incredible way to describe the linkage between your films, all of which have dealt with young people navigating the stigma of difference in some way. I’m curious what has drawn you to these stories. Are you purposefully seeking out that thread as you take on new projects?

You know, I didn’t quite know that I was until this one. I think once I started working on How to Dance in Ohio, I was like, alright, there’s a theme, I see it. I think that there’s something about stories of people trying to belong that really appeals to me. People trying to create communities, people who don’t necessarily don’t fit in, people living in the margins, people who might be different from the norm trying to make lives for themselves — I think there’s an unusual resilience and a strength in that which really draws me in.

How to Dance in Ohio premieres on HBO on October 26 at 9pm EST. Watch the trailer below.