The Changing Face of Autism: Growing Up and Going Forward
“We need to understand that all children with autism grow up,” says the narrator in the documentary film “The Changing Face of Autism.” This is a fact with which the film's co-executive producer, Lynne Duquette, is all too familiar. Her son, Sam, is on the autism spectrum. Three years old when filming began, Sam is now a 16-year-old. “The Changing Face of Autism,” which premiered in 2008, was the result of six years of collaborative effort by the production team.
Along with Lynne Duquette as the visionary and co-executive producer, the team included Raoul Peter Mongilardi as co-executive producer and John Chisholm as director. The film features interviews with families of individuals on the spectrum, as well as medical professionals, educators, therapists, and other key players in the autism world. Though the film highlights the need for early intervention services, it also looks forward to the future, reminding viewers that individuals with autism need support and services for each stage of their lives.
“The Changing Face of Autism” was nominated for the 2009 Voice Award. Autism After 16 talked to Lynne Duquette about the film's message, and Duquette's life with her son Sam.
AA16: As a parent, what were you hoping to communicate to other parents and families of individuals on the spectrum through this film?
LD: I made the film so that other parents wouldn't feel so isolated. [Isolation] was my overall feeling during not only the diagnostic process, but in trying to find my way through all of the different avenues presented as things that would help Sam. [When your child is diagnosed with autism], your life turns upside-down, and you become very one-dimensional.
At the time, I didn't have the inclination to seek out a support group. In retrospect, I'd say to parents that the first thing you should do for emotional support (and a wealth of information) is seek out a support group.
I also made the film to honor the people [therapists, teachers, caregivers] who tirelessly continue to help individuals with autism. It takes an enormous amount of patience to do what they do, and often there's no immediate gratification. Yet these people devote their lives to helping these individuals, and I don't know what we would have done without that kind of dedication.
AA16: What led you to make “The Changing Face of Autism”? Did you have previous experience working in film?
LD: I am an actress (mostly commercial talent), and I have a strong journalism background. I like to write, and I like to tell stories. I was studying journalism at the time of my son Sam's diagnosis, and the idea to do the film came because I read an article in the Los Angeles Times that profiled the families that ended up in the film.
Because I was so isolated, I thought, “Wow, these people are having the same experiences that I am!” It [the LA Times article] was a well-written piece in terms of the facts, but I felt unless someone was intimately connected to the material, their eyes would glaze over. I felt it would be more impactful to show the family members talking, to let others hear their voices. I wanted to bring them to film ... to make them seem more real.
And, as luck would have it, one of my neighbors, Raoul Peter Mongilardi, has his background in TV, in production, and another neighbor of ours was John Chisholm, a TV writer and director. One day, after an earthquake, we were up on the roof of our building, and I was so frustrated after an IEP meeting with my son, and he [Rauol] said, “You should tell this story.” And that's how our collaboration began. The three of us just happened to have the three components necessary to make a film, and our proximity [to one another] was definitely a key.
Once we had this idea for a film, I reached out to the participants in the article, and one by one they said yes [to our interview requests]. When Dr. Ivar Lovaas returned our call, it was really exciting, as though the President of the United States had agreed to an interview!
As we filmed, one parent could finish the next parents' sentence, and I could see a story unfold. It was a double-edged sword: I was so happy but to make the movie, but sad that I had to.
AA16: How does the film fit with the way in which many adults with autism see their experiences—that is, not as something to be cured, but as a difference to be embraced? For example, in the film Ivar Lovaas talks about "building a person" where there was none.
LD: With regard to Ivar Lovaas's statements: I found them to be helpful in breaking down what parents could not articulate to those who may not know the process of how to create the learning patterns necessary for adaptation and ultimately, success in the world.
Knowing that he has dedicated his life's work to unraveling the mysteries surrounding autism in a skeptical society, I am confident he meant no harm or disrespect and most certainly did not mean to say that a person with autism doesn't exist. Rather, that the pathways for learning did not exist. He appeared [in the film] as an expert in the field of research of autism.
That being said, I don't think there is a person affected by autism who doesn't cherish every milestone and victory and embrace their situation. Thinking has evolved since those statements … It was my experience, and the experiences of those whom I chose to help us. If someone could relate or not feel so isolated in their quest to help their child, [then I'd have achieved] my goal.
AA16: Can you tell us about the "change" referred to in the film's title?
LD: We chose "The Changing Face" because [of the realization that] it wasn't someone else's child’s face—it was my child's.
AA16: The film has a strong advocacy component in terms of raising autism awareness and improving quality of life for individuals with autism; how has the film aided in advocacy efforts?
LD: I started making the film during a time in which I was angry because it didn't feel like anybody knew anything [about autism]. Doctors, educators, psychologists … they were all pointing fingers at one another.
In terms of an advocacy message, I feel like if you watched my film you'd get the sense that you have to trust your gut. This isn't a how-to movie, it's a how I did it movie, meant to keep you going. It's not easy. I struggled, because I didn't want people to feel like I was telling them what to do. In the film, I focused on the experts that I used and trusted. I wanted to show people the advice that I listened to. I showcased the pieces of my puzzle.
The participating families were also a big factor, since each family has a different dynamic, and they have different roads to navigate. I wanted to show the diversity of how autism affects people.
AA16: What do you think has been your greatest challenge to face as your child with autism became an adult?
LD: Because of the fact that you wouldn't instantly recognize Sam's disability, I'm not sure he'll be treated appropriately in certain situations. I want him to be understood, to be protected, to sense danger. I want what anyone wants for their child, for them to be happy, healthy, and successful.
The challenge is helping him keep up with this world that goes so fast. The world doesn't move at his pace, and he doesn't move at the pace of the world. He has so much to offer, but in this world, it's really hard for people to just slow down and listen. Only someone who has autism can understand how much others have to slow down, how tough it can be to switch gears.
AA16: What's been the greatest joy of being a parent of a young man with autism?
LD: My son is now one of the fastest swimmers on his high school swim team; he's also run two triathalons. My joy is that he's been able to participate on a team the team, that they accept him and love him. When my son achieves camaraderie, that is my greatest joy. He was alone for so long.
AA16: In your experience, how can parents like you to prepare themselves and their children for times of transition?
LD: I do have a philosophy of transition, one that's been immensely helpful for me. Here it is: The transition [from teenager to adult] is the cornerstone of their adult success. And this [Transition] is a time when there are still so many supports in place, a network, a net. When you're faced with a decision about how much or how little independence you should give [your child], you have to imagine … imagine [your child becoming] someone who doesn't get to have the experience of trying it on his own.
So I think to myself, Now is the time to make the mistakes. Now is the time to err on the side of giving [individuals] more independence. I know Sam craves it. He's in a school that's fantastic, and he has a lot of support, and he's blossomed. I struggled with [giving him greater independence], saying to myself, “But everything's working! I don't want to change anything!” Yet if you don't do it now, it's so much harder later.
AA16: What resources have been most helpful to you as a parent of a teenager on the spectrum?
LD: I looked everywhere for something to make sense. In 2003, the Internet was not like it is now. I downloaded medical literature, but it was all jibberish [to me].
[When I found] the book “Let Me Hear Your Voice” by Catherine Maurice …. That was the first time I felt a kinship. I don't know how this woman did it, but she gave me the groundwork for our lives; she showed me how it was going to be. It was a roadmap. It outlined how much work it was going to be [to raise a child with autism and do therapy], and that actually made me determined to enjoy the experience.
I think the best that you can hope for is to enjoy the moment ... to learn to live with this new situation, to accept it. I just invited autism in and decided to make it a part of the family.
AA16: Was there one thing that stood out about the experience of making “The Changing Face of Autism”?
LD: I think what stands out was the day that Sam was old enough to understand that I was making a movie about him, that I was proud of him. And he gave me the OK to share his experience with the world. He gave me his blessing. He gave a speech at our premiere, and he said, “I want people to have a good life like me.” I was in tears for days.
AA16: What's the most significant lesson you've learned as you've journeyed with your son?
LD: He has definitely taught me. He has taught me everything I didn't know.