Interview: Rachel Dretzin and Andrew Solomon on “Far from the Tree”

Posted on August 2, 2018 at 8:00 am

“Far from the Tree” is a new documentary based on the award-winning book by Andrew Solomon that explores the challenges families families face when they have children who in one way or another seem to be especially different and hard to understand. The movie uses Solomon’s own story as a gay man whose parents struggled to accept him as a starting point to examine other families: a mother and her adult son with Down syndrome, a teenager with autism and his parents who tried every possible therapy until one had a remarkable result, three people with dwarfism and their families, and the parents and siblings of a young man who committed a brutal murder when he was still in his teens.

In an interview, Solomon and director Rachel Dretzin talked about the lines between nature and nurture and between helping and accepting people who are different.

I remember in the 1960’s and 70’s, the authorities were still blaming “refrigerator mothers” for autism. Now we see it as entirely a matter of physical causes. Where are we in the attribution of our abilities and personalities between nature and nurture?

Solomon: Well, I think both nature and nurture can occur, and we look at a range of conditions in the film. I mean Down syndrome was not caused by nurture, but how well someone with Down syndrome is able to function in the world may have something to do with nurture. Different people with Down syndrome have different capacities, just as different people without Down syndrome have different capacities, but there’s no question that really good parents are able to bring their child to a higher level of functioning. So, certainly refrigerator mothers don’t cause autism, but mothers who are warm and engaged and supportive are able to help their children through autism. The family you see in the film devoted themselves one hundred percent to their autistic child, and ultimately were able to help them quite a lot.

So that’s what parenting is, is figuring out what their nature is and then nurturing whatever their nature is?

Solomon: Well, nurturing whatever their strengths are and helping them to realize their full potential. I mean parenting involves loving your children, it involves accepting your children, and what it shouldn’t involve is trying to transform their children because you are uncomfortable with the way that they’re different. You don’t want to have families to say “I have a child with Down syndrome and I’m going todo all of these things because I hate having a child with Down syndrome and I want to make it disappear and go away.” You recognize that it can create a lot of difficulties in life and so here is the way that we’re going to help him to be independent or self-reliant or give him as much education as we can and so on and so forth.

We all as parents have a responsibility for changing our children. We have to educate them, to give them moral compass, teach them some manners, and we also all have to accept and celebrate our children for who they are. Some things clearly need to be accepted and celebrated and some things clearly need to be changed and a great deal falls in a very funky middle. The film is really about how people navigate through that foggy middle

While we know different in theory, do we still somehow expect that our children will be Xerox copies of ourselves?

Dretzin: I think we all have some fantasy when we have children. Andrew says it in the book, I think it’s the first line, “There’s no such thing as reproduction.” Having children is an act of production. It is always a leap into the unknown and we all know it’s a leap into the unknown, so I think imagining that our children are gonna be just like us is a sort of comforting way of padding the jump.

The families in the movie have very little overlap with the book. How did you select them?

Dretzin: The first decision that we made, which we made very, very early on, was not to for the most part not to use the same stories that are in the book. Jason Kingsley is the one character in the film who’s also in the book, but his life has kind of moved into a new phase and a whole set of new experiences that were not part of the book, so that’s part of the reason we decided to include him.

Once we decided we were going to find new characters it was about really narrowing down the scope of what we were going to look at. There are twelve chapters in the book, ten of which are devoted to different identities. We knew we couldn’t do them all, so we thought about it thematically in terms of stories that would address some of the most important ideas in the book, and not necessarily repeating them.

So for example, there’s a lot of overlap between the themes of the Deaf chapter in the book and the themes of the dwarf chapter in the film. Both are about communities that have wrestled mightily with the question of whether cure is something they want, both are communities that have an organized empowered community that is very positive, if not celebratory, of their condition. So we decided we would do dwarfism because deafness is something that’s been looked at a lot and is further along.

Then we went out and met people. My producer, Jamila Ephron, and I spent about a year meeting dozens and dozens and dozens of families. Whether it was conferences or conventions or through different groups, then narrowing it down, then meeting them in their homes multiple times before we ever brought cameras in.

You were dealing with very intimate, often painful topics. How did you make them comfortable with you and with being so public on screen?

Dretzin: We’ve built a lot of trust. I mean, again, the film was made over a couple of years and we spent many, many, many hours with these families, multiple visits. So, in some cases the trust was there right away. Emily Kingsley and Jason, partly because they had been in the book and they knew Andrew and partly because they were just further along, they’ve done quite a bit of media before, they were comfortable almost immediately. But other families took time. It’s a funny thing that happens. You spend enough time with people and you like them enough and they like you enough, and eventually everything else just kind of goes away and people really do just relax and there are times where nobody is thinking about the cameras because we’ve been there for so long. I hope those are reflected in the film. That’s the magic moment.

There is a moment in the film at the Little People convention where they discuss a possible “cure” for dwarfism and some people are reluctant. As one of them says, “I don’t think I need to be fixed.” How do we decide and who decides whether something needs to be fixed?

Solomon: The question is whether it’s addressing short stature because it’s uncomfortable to be in the world with short stature, or whether it’s addressing short stature and these other health complications and proposing ways to avoid all of the complications that are involved. Every condition that we looked at has elements of social deficit and elements of inherent deficit. So if you’re a dwarf and you need spinal decompression, that is a biological reality, that is something that no degree of adjusting our social attitudes can address and it needs a biological response, but if you said the problem with dwarfism is that everyone stares at you and people take pictures without permission, and you can’t reach things in grocery shelves, those are all things that can be shifted and fixed, and they should be shifted and fixed and there should not be reasons for eliminating dwarfism from the spectrum of human experience.

The question is to try to tease apart the inherent problems of the conditions, and the social problems of the conditions, and to ensure that more medicine is focused on the biological issues, and that social reform is focused on the social issues.

If I had a deaf child, if one of my children was born deaf, I would get him cochlear implants because I think communication between parents and children is paramount and I’m not good at languages and I would not have become fluent in sign in three weeks, it would have taken many, many years. But I would also bring that child up around other Deaf people and learning to sign as the surest way to leave the child later on with the option. You can keep the implant on and function mostly in the hearing world, and you could move back and forth between those two worlds in a fluid and easy fashion.

Dretzin: I would just add to that that I think there’s been a kind of misconception about the inclusion of a crime story in the film that we’re trying to equate what Trevor did with being deaf or being a dwarf or any of these other sorts of conditions. It’s really in the film to show the enduring nature of parental love, and that story challenges parental love in ways that none of the other stories in the film actually can. It’s not there to suggest that we should fully accept what Trevor did or that he doesn’t meet to be fixed or anything of that nature.

I loved the music in the film. Tell me about it.

Dretzin: Well, we have two composers actually, Nico Muhly was one of the prodigies featured in Andrew’s book, so that was kind of a no-brainer. His music is beautiful particularly what he does with the autism section with Jack. You hear those voices and the buzzing and it mimics some of what is going on in Jack’s brain. Yo La Tengo was an absolute delight to work with. They came into the project a bit late because there was a song of theirs that I wanted to use and I approached them about using it. We got into a conversation about the film and they expressed so much interest in getting involved. One of the most interesting moments was actually when I screened the film for Yo La Tengo for the first time. It was a rough cut and they loved it but they thought there was too much of their music in and actually encouraged me to pull back, which was the smartest call I think that they could have made. We really had to be careful with this film not to get sentimental or manipulative emotionally because it’s such an emotional film and the music has a lot to do with that. So we really tried to pull back with the music and not overdo it, and in the end I think that that helps make the film not feel sappy.

The movie is about family members, who are often very different from one another and still find ways to support each other. But it is also about the importance of being with other people who are like you, about finding your tribe, whether you are born into it or not.

Solomon: We live in the era of the internet, I think a lot of these families find other families going through similar experiences. If you know only people who are like you you become a caricature of yourself but if you don’t know anyone who’s like you it’s hard to figure out who you are.

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Interview on the New Character with Autism on Sesame Street

Posted on April 13, 2017 at 12:00 pm

Julia, “Sesame Street’s” first character with autism, helps children and their families understand people on the spectrum. Jennifer Thorn, Ph.D., Associate Professor in the English Department of Saint Anselm College answered my questions about Julia and what she can teach us.

The autism spectrum includes a wide range of behaviors and capabilities. Is there a definition that describes everyone described as autistic?

The 1990 Individuals with Disabilities Education Improvement Act (IDEA-1990) defines autism as a category of developmental disability that significantly affects verbal and nonverbal communication and social interaction. IDEA-1990 recognizes that autism typically, but not always, becomes evident in children before the age of 3.

By classifying autism as a developmental disability, IDEA-1900 makes clear that it is not a condition arising from emotional disturbance.

Behaviors associated with autism, but not strictly definitional of it, include
• resistance to environmental change;
• discomfort due to heightened sensitivity to sensory stimuli; and
• engagement in repetitive actions.

Why is it important for children and their families to see an autistic character on television?

Current research indicates that half of American children live in homes where the television is on half of the time that family members are home, whether or not anyone is watching it. Three-fourths of American children now have access to mobile devices; one-fifth of these children use mobile devices daily. Children are awash in media, which carries messages, directly and by implication that children are more likely than adults to absorb, because they lack adults’ cognitive abilities.

TV shows offer visions of normalcy. Sesame Street has long recognized that the absence of certain kinds of people in programming conveys powerful messages about what lives are, and aren’t, valuable. Television models values and behaviors that children absorb. The absence of characters with autism suggests that their lives are less worthwhile than the lives of neurotypical people.

I say “characters with autism” rather than “autistic characters” because no one can be reduced to any one quality he or she might possess.

Why have a puppet with autism rather than bringing on a real child with autism as they do with other disabilities?

Sesame Street is to be commended (as it has frequently been, by numerous awards) for its inclusion of content relating to disabilities both to teach content and to model a “normalcy” in which people with disabilities are included.

For example, the violinist Itzak Perlman, who was born with polio, was featured in a 1981 segment in which a little girl ran up a set of steps that he then climbed with his crutches—teaching children about the obstacles that everyday life poses for so many. That segment offered content. In another segment, “Katie and the Baby,” a soon-to-be-big sister anticipated the arrival of a new sibling; the focus was on this ordinary, everyday experience. She had Down Syndrome, but the point was that she was an excited little girl facing an exciting new experience.

So both approaches are valuable—teaching, and taking for grant the presence of a person with a disability. The fact that Julia is a puppet (and such a very appealing one) also puts children at ease and gives them permission to have fun and laugh as they would watching any other character.

What can children learn from Julia about reaching out to people with autism?

Children can learn—and perhaps the older siblings and adults who might watch with them—that people with autism are people, too. First and foremost, including Julia in the gang, matter-of-factly playing and learning with friends and neighbors, shows that people with autism live lives as rich and individual and valuable as any other person’s.

What does it mean to be “culturally and linguistically diverse?”

This phrase means – being mindful of the complexity of “normal” and the ways that “normal” might be seen or experienced differently by different kinds of people. It involves recognizing that programming that shows children only one kind of person implicitly suggests that that kind of person is more normal, more valuable, than other people.

What are Julia’s special concerns and issues? Can she discuss her autism and guide others on how best to communicate with her?

I can’t speak for the writers (I can only trust and applaud them); my sense is that Sesame Street wants Julia to be “not a big deal”—one child with other children, having good days and bad days, problems one minute and joy the next. That integration is the real, and very powerful, value of the addition of Julia to the cast.

What will children with autism think about Julia?

Here I think of the words of Emily Perl Kingsley, the mother of a child with Down syndrome who began appearing on Sesame Street in 1977. In that era, it was widely assumed that children with Down syndrome could not be taught. She has written, of the power of Jason’s inclusion on the show: “Children with disabilities are pleased and proud to see other children like themselves represented on television as fully participating members of the community.”

Julia — Sesame Street’s First Character With Autism

Posted on March 28, 2017 at 3:03 pm

Sesame Street’s television series has a new character. Her name is Julia, she loves bubbles, and she has autism.

Julia has already been a Sesame Street online character, and it is great to see her on ths whow, letting families see “the amazing in all kids” and learn how to make friends with different kinds of people.

And Sesame Street gets a visit from Sia, who shows a bit of her face for a change as she sings about songs!

Owen Suskind and His Parents Talk About the Autism Documentary “Life, Animated”

Posted on July 8, 2016 at 8:00 am

Owen Suskind tells me, “It feels interesting to be on the autism spectrum and fascinating.” His parents remember what he has said to them about how it feels to have autism. Ron Suskind reminds him, “Remember you said you see everything at once and you can remember all the moments in your life, maybe too many moments, but you go across them and you get a sense of what?”

“My place in the world,” Owen answers.

Cornelia Suskind adds, “And sometimes it’s a little overwhelming having all the stimulation coming in to you at once. You need to create a quiet space around you. When you were younger it was hard to communicate, language was really hard.”

The Suskinds were there to talk about their new documentary, “Life, Animated,” based on Ron’s best-selling book about Owen and how he taught himself about the world through Disney films. The movie is about Owen and autism and the scary and exciting adventure of leaving home, but most of all it is about family. The Suskinds are one of the most loving, devoted, and compassionate families ever to appear on screen. It is a joy to spend time with them, whether through the book, the film, or an interview.

Owen has regressive autism, meaning that he developed along typical milestones until about age 2½, and then lost his ability to communicate and continue to develop. He loved to watch Disney animated films but barely spoke until age 6, when he suddenly told his parents that his brother Walt did not want to grow up, “like Peter Pan and Mowgli.” Owen was using Disney films to teach himself how people feel, behave, and communicate.

“They helped me communicate to find my place in the world and get my speech back,” Owen said.

Cornelia explained, “Movies are always the same. Every time you pop it in, every time you put in a VHS it will always be the same movie and the same language and the same characters instead of constantly changing, the way it does with people, even my expressions, with you and me sitting here. it’s always the same, very, very exaggerated, very colorful. And I think the combination of the music and animation together activating those parts of the brain were really key in tapping into how Owen was feeling but not able to express.”

When Owen was younger, he preferred hand-drawn animation “because it does expressions and feelings.” Now, he likes computer animation as well, perhaps because it has come closer to hand-drawn in its expressiveness and richness of detail. He has very strong views about sequels: “The only four theatrical animated sequels I love are ‘The Rescuers Down Under,’ ‘Fievel Goes West,’ ‘Toy Story II’ and ‘Fantasia 2000’ and the only direct-to-video animated sequels I love are after the very first film of ‘The Land Before Time’ the animated film theatrical in 1988 were ‘The Land Before Time’ direct to video animated sequels. I would go all the way until the 10th one from late 2003, early 2004 and then conclude right there.” He loves to draw the sidekick characters, who have special meaning for him. His favorites are Sebastian from “The little Mermaid,” Iago from “Aladdin,” and Lucky Jack from “Home On The Range.”

Owen has his own YouTube channel, Owen’s Disney Club, where he discusses his favorite movies, displays Disney paraphernalia currently available for bid on eBay in a weekly “Finds of the Week” screencast, tours his personal collection of rare and hard-to-find Disney items, and interviews special guests.

Owen may be the only fan whose favorite Jimmy Stewart role is in “Fievel Goes West,” where his character says, “Just remember Fievel, one man’s sunset is another man’s dawn. I don’t know what’s out there beyond those hills but if you ride yonder, eyes steady, head up and heart open, I think one day that you’ll find that you are the hero that you’ve been looking for.”

Owen pointed out that Stewart, like a surprising list of other stars, made his last performance in an animated film. Another favorite is Mary Wickes, whose last performance was as a gargoyle in “Hunchback of Notre Dame.” Owen quoted her: “Life’s not a spectator sport. If watchin’ is all you’re gonna do, then you’re gonna watch your life go by without ya.”

Cornelia’s hopes for the movie are equally inspiring: “If we could share a little bit of a positive experience, not that obviously every minute in the film is a positive and our every minute has not been positive, but just the reality of it for people to get another image of what a person on the spectrum is like instead of ‘Rain Man,’ to see how fully realized Owen’s life is and that his wants and desires are every bit exactly the same as ours. I mean it’s extraordinary, it really is. So we’ve guided him for sure and try to teach him but he teaches us a lot more in a profound way.” And in this movie, they teach us all.

Life, Animated

Posted on July 7, 2016 at 5:34 pm

B+

Lowest Recommended Age:	Middle School
MPAA Rating:	Rated PG for thematic elements, and language including a suggestive reference
Profanity:	None
Alcohol/ Drugs:	None
Violence/ Scariness:	Emotional upheavals
Diversity Issues:	A theme of the movie
Date Released to Theaters:	July 8. 2016

Temple Grandin described her experience of trying to understand social interaction as a person with autism: like an anthropologist on Mars. The kinds of social cues that come naturally to neurotypicals can seem strange and even disorienting to people on the autism spectrum, who may be overwhelmed with undifferentiated input that makes it even more difficult to understand the mood and motives of the people around them. “Life, Animated,” based on the best-seller by Ron Suskind, is the story of Owen Suskind’s efforts to use Disney animated films to help him understand and communicate with the people around him. Taking up where the book ends, it is the story of the most universal of human experiences — leaving home, becoming independent, negotiating romance and work — as seen through the unique mind of a man who finds his answers in Disney movies.

And of course so many Disney movies are about growing up. We see Owen watching Wendy in “Peter Pan” as she says, “I have to grow up tomorrow.” And Owen tells us he is a little nervous and a little excited about graduating and moving out of his parents’ house and into a group home.

Owen was developing normally until age three, and then suddenly he “vanished.” He stopped speaking. “It’s like we were looking for clues to a kidnapping.” His parents found themselves in those less-friendly doctor’s offices, the ones that have rooms with special windows for observation. Owen was diagnosed with “pervasive developmental disorder,” which basically means: “we have no idea what the problem is or how to fix it.”

The Suskinds, one of the most loving, wise, and devoted families ever put on film, were determined to undertake “a rescue mission to get inside this prison of autism and pull him out.”

And it turned out, from the inside of that prison, Owen was on his own rescue mission. Suddenly, at 6 1/2, after years of no clear sign that he could still speak or of how much he understood, he said to his parents after his brother’s birthday party, “Walter doesn’t want to grow up, like Mowgli and Peter Pan.”

That is not only a complex sentence; it is a complex idea. The family began to use the Disney films as a sort of English as a second language mode of communication. Owen’s father used a puppet of “Aladdin” character Iago to speak to him, and Owen answered back. “We began to speak to him in Disney dialog.” As an expert in the film notes, animated characters are exaggeratedly expressive. Their fear, anger, and affection is clearly shown, and repeat viewings are illuminating and reassuringly the same, a welcome consistency in a world of chaos and unpredictability. “Disney keeps the world neat and tidy.”

It also gives Owen a chance to interact. He starts a Disney club for other people with autism. A surprise visit from two Disney voice talents is a movie highlight, and, clearly for the actors unused to such unalloyed enthusiasm, a career highlight for them.

And Owen draws the characters, too. But only the sidekicks, never the principals, the stars. Perhaps he feels that he is a sidekick as the people around him have adventures he will not.

Director Roger Ross Williams, a family friend, is clearly trusted by the family and he more than earns it with a sensitive, understanding approach. With the permission of Disney, he includes clips and animation inspired by Disney that tells Owen’s story in a way that lets us see through his eyes the way that “Peter Pan” and “Aladdin” let him see through ours.

Parents should know that this film includes discussions of autism, growing up, and separation, a painful break-up, and a mild sexual reference.

Family discussion: What movie helped you understand feelings and communication? What is the best way for families and friends to help people like Owen?

If you like this, try: “How to Dance in Ohio” and “The Story of Luke”