‘Ethan at 21’: Filmmaker tracks the life of an autistic boy and his family

When it comes to her favorite films, Josephine Sittenfeld counts one title at or near the top: the documentary film series “Up,” which since 1964 has chronicled the lives of 14 British men and women every seven years as they’ve grown from schoolchildren to late middle age.

It’s not a surprise, then, that Sittenfeld, a photographer and filmmaker herself, has recently updated a film she began over 10 years ago, in which she profiled a young autistic boy from Amherst and his family as they navigated the challenges they faced.

Now that young boy, Ethan Floquet, has grown into a young man, who at age 21 is working with a landscaping crew and exploring, to some degree, a new sense of independence. And in “Ethan at 21,” Sittenfeld looks at how he and his family have changed, while examining the larger issue of how adults with disabilities can find a place in the world.

The approximately 45-minute film, which plays at the Whole Children Film Festival in Hadley on Sunday, also reflects the close bond Sittenfeld has developed over the years with Ethan’s family: his mother, Cammie McGovern; his father, Michael Floquet; and his two younger brothers, Charlie and Henry.

“It’s a really personal project for me,” said Sittenfeld during a recent phone call from Providence, R.I., where she teaches photography at the Rhode Island School of Design (RISD). “I have so much admiration for how Cammie and Mike have worked with Ethan, and how his brothers make him a part of their lives.”

“They really welcomed me into their home and shared all the ups and downs with me,” she added. “And Ethan is a every multifaceted person, with joys and frustrations like all of us … Getting to know him and see him grow has been a great experience.”

Cammie McGovern, an acclaimed novelist who has written several books built around young characters with special needs (“Say What You Will,” “A Step Toward Falling, “Just My Luck,” “Chester and Gus”), said her son is thrilled to be the subject of a movie. And she also credits Sittenfeld with taking the time to get to know her family and making them comfortable being filmed.

“You feel a little self-conscious at first, but Jo very quickly put us at ease. She was just very flexible and respectful,” said McGovern. “She’s also very funny and reassuring. She would film us not doing all that much — maybe we’d done nothing more than eat dinner — and she’d say ‘That was great! I loved that!’ ”

Sittenfeld notes that when she began the project, as a 26-year-old graduate student, she was single. Today, at 37, she’s married and the mother of two young children, and she says that if there’s one thing she has learned from filming Ethan and his family, it’s the importance of being flexible with children, helping them forge their own paths, and not letting frustration overwhelm you.

“Cammie and Mike have really been an inspiration to me,” she said. “Really, the whole family has been.”

From photography to film

Sittenfeld’s project began in 2006 along different lines. Then a graduate student in photography at RISD, she was looking to take photos of autistic children as part of her coursework. She had heard of Cammie McGovern and Ethan through her sister, the novelist Curtis Sittenfeld, a friend of McGovern: The two writers had gotten to know one another in the 1990s when both were at Stanford University, McGovern as a Stegner Fellow and Curtis Sittenfeld an undergraduate.

“I basically cold-called Cammie, and she invited me up to meet Ethan, who was about 10,” said Josephine Sittenfeld. “I was taking all these still photos of him, and I felt they didn’t really capture his energy, the way he moved through space … I thought making a film about him was the best way to do that.”

Sittenfeld at that point had studied filmmaking a bit, and she got a video camera and began chronicling Ethan and his family with that. She spent long stretches with them in Amherst and on family trips to the zoo, to their cabin in Vermont and other places, even sleeping on a few hotel floors on occasion.

As part of the story, she also filmed Jennifer, a non-verbal autistic girl from Belchertown, and spent time with her and her mother, Christine Purcell. The resulting film, “Ethan and Jennifer,” played in 2009 at Whole Children, the Hadley program center for children and young adults with special needs (the organization was co-founded by Cammie McGovern).

Over the years, Sittenfeld stayed in touch with Ethan and his family, and in the past year or so — this time working with a cinematographer and a film editor — she went back to chart his progress. As the film chronicles, in the past year he’d taken some big steps: getting a job with a landscaping crew, for which he operates a number of machines (he has long been enthusiastic about machinery) and walking into downtown Amherst by himself to buy lunch.

“That was something my husband and I wrestled with,” said McGovern, reflecting on his venturing into town, alone. “Is he really ready to do this? But if we don’t let him, are we holding him back from doing something else he might want to do in the future? In the end, we said ‘OK,’ and [the film crew] followed him into town, and it just made for a great scene.”

The film also shows Ethan walking with his middle brother, Charlie, at Charlie’s graduation from Amherst Regional High School last June. Technically, Ethan is part of the public school system until he’s 22, but he chose to “graduate” last year so that he could do so alongside Charlie, Sittenfeld said.

“There’s a wonderful bit where Charlie is fixing Ethan’s graduation cap for him and putting his arm around him,” she said. Charlie and Henry (the youngest brother, who’s 14 and in middle school) “are both so sweet and supportive with Ethan,” Sittenfeld added.

McGovern says there may be a perception that the siblings of special-needs children can get short-changed by parents, given the attention that must be devoted to a child with a disability. But in her experience at Whole Children, she says, those other siblings “tend to see the bigger picture of what their family’s involved in, and I think it makes them resilient and adaptable.”

In the case of her two younger sons, she added, “They’ve been able to help their older brother. That’s a confidence booster.”

Both McGovern and Sittenfeld say “Ethan at 21” explores the difficult issues facing special-needs children and their families as the children grow into adulthood — particularly the fact that there are few job opportunities for them. That said, Sittenfeld noted, “I think it’s an optimistic film.”

As McGovern wrote last year in a widely read New York Times essay about her son, success with a special-needs child “won’t be measured by academic performance or job placement. It will have more to do with accumulating small pleasures and filling your life with those.”

And Ethan, a big fan of music (favorite singer: Bruce Springsteen) who takes classes at the Berkshire Hills Music Academy in South Hadley, a post high school program for special needs teens, had this to say about being the focus of Sittenfield’s movie: “I gotta keep telling myself how lucky I am.”

Steve Pfarrer can be reached at spfarrer@gazettenet.com.

“Ethan at 21” plays Sunday at the Whole Children Film Festival, along with three short documentaries. The festival is from 4:30-6:30 p.m. at Hadley Farms Meeting House, 41 Russell St. Admission is $10 and benefits Whole Children (wholechildren.org).

Director Josephine Sittenfeld welcomes feedback and will field questions, along with  Ethan  and his family, after the screening.