Reel Understanding in Autism

As a filmmaker, it was natural that Claire Doyon would always have cameras close by as her daughter Penelope grew up.

But once Penelope started showing the behavioral signs that would lead to her ASD diagnosis at age three and a half, the cameras’ presence became an imperative.

“It was like the cameras or Penelope, I don't know which, but something was coming to me and asking me to be this honest and to share this intimacy, to share this life we had together,” says Claire via video call from her home in Paris.

Capturing the truth of living with ASD

The French director’s moving documentary Penelope, My Love charts the course of Claire’s life with her daughter and the journey they shared from birth right up to the decision to place Penelope in care.

The film has been touring the festival circuit over the past 12 months to much acclaim. It captures the various stages of Penelope’s development with intimacy and honesty as Claire’s narrates unfiltered insights into treatment options, decisions, and the impact everything has on both Penelope and her family.

“When Penelope was very young, I started to film her to show to educators how we had to deal with this issue,” explains Claire. “Over the years, it developed into something much more. The experience of sharing the film with other (ASD) families was so intense, it kind of overwhelmed me. I went to places where there was nothing for autistic people and so I could feel that the film was opening a path. And that path can be opened for so many people through questions, sharing, and testimony of our lives.”

Navigating a resource desert for ASD individuals

Like many parents of ASD children, Claire and her partner Nicolas Maureau were completely unprepared for the challenges facing them when Penelope – or Pélo, as she is affectionately known – was formally diagnosed.

Twenty years ago, support in France for the ASD community was “minimal if anything,” according to Claire. ASD treatments were based on psychoanalysis – looking back now, it created a shocking situation where autism, was once understood, according to a particular study, as a condition emerging from psychological origins within a troubled family setting, especially linked to the dynamics between the child and the mother.

After exploring a range of treatments worldwide, including applied behavioral analysis in New York and sessions with a shaman in Mongolia, Claire and her husband ultimately established the experimental treatment center MAIA in Paris. The center, which Claire spearheaded, now serves approximately 24 children and adolescents with autism.

The unique paths of individuals with ASD

“When I came back from Mongolia, I could feel that there was a shift in my mind,” explains Claire. “I really started to feel Penelope from another perspective that was not with the idea of wanting her to recover from autism. It was from the idea of me seeing her as a hero more than as a person with a deficiency. So then I thought, this would be interesting to make a film seeing through the years. My psyche was shifting and drifting more and more from the thought of curing her to the acceptance of her, to a celebration of who she is, and to saying that she's someone very exceptional, and that we have to learn from her."

All of this is captured in Penelope My Love. Claire says by presenting the highs and lows of this journey, she wanted fellow ASD families around the world to realize that though ASD traits can be distinctly individual in nature, there are many common experiences. The audience witnesses Penelope develop into a mostly non-verbal but very athletic young woman with her own unique character, as well as how the relationship with her mother evolves.

“I don’t think I can really give anyone advice,” says Claire. 

"Every life is so particular and the situation so specific, and autism is a great big bag in which you put a lot of different things and pathologies. If I had accepted Penelope earlier as an exceptional being, which I'll always thought she was, but at the same time, in the deepness of my heart, I wanted her to be ‘normal.’ I think if people can abandon this as soon as possible, it leads to a great gain of time and opportunity to learn.”

A bond beyond words

By the film’s end, Penelope has reached adulthood and Claire has come to realize that their paths must diverge. There’s no denying the difficulty of the decision – Claire admits that she can’t even watch her own film – but their relationship continues to evolve.

“Pélo is full of wisdom,” says Claire. “She has gained a lot of adult wisdom. We have a beautiful relationship because we have so many things to learn from her. I have to learn more and more how to listen to her and her connections with things. The very tiny hints she gives when she touches something. I can see that this means something. And when you see them without this specific attention to trying to detect that something is wrong, you don't see the message. This behavior is also a way of speaking and a way of expressing herself, and these are things we are learning every day.”