(Left to right: Neal, Adam, Lexi, Henry, Wyatt)
Editor’s Note:
Doc Soup is a monthly documentary screening programme run by the good folks at
Hot Docs. It gives audiences in Toronto (and now Calgary and Vancouver!) their regular doc fix each year from the fall through to the spring, leading up to the Hot Docs festival itself.
Autism: The Musical (2007, Director: Tricia Regan): Winner of a slew of audience awards at recent festivals, Tricia Regan’s film sheds light on the mysterious world of the autistic child. Autism is now diagnosed in one child in every 150, and comparatively little research has been conducted into understanding it. Serendipitously, there is an interesting article in this month’s issue of Wired magazine, which postulates that instead of treating it as a disease to be cured, we should be trying to understand autism as just a different type of thinking. This documentary might actually help that process. We meet five different children, and their parents, who help us understand the challenges, but also the potential, of being autistic. At the centre of the film is Elaine Hall, mother of Neal and the creator of The Miracle Project, an organization dedicated to arts education for autistic kids. Elaine gathers a group of children each year with the goal of putting on a musical performance. She adopted her son Neal from Russia, and after he was diagnosed as autistic, her marriage broke up. Neal is perhaps the most affected by his condition, prone to tantrums and unable to speak. But Elaine is energetic and positive and at the first meeting, Regan’s camera pans around the room to encompass the curious kids, but more tellingly, the suspicious (and exhausted) faces of the parents.
The film follows a fairly standard chronological timeline, with titles informing us how close we are to opening night. Along the way, we take detours into each featured child’s story, along with the story of their parents. I found each one incredibly moving, and was pleasantly surprised at the complete transparency and gut-wrenching honesty of the parents. Lexi’s parents split up during the course of filming, and her mother’s brutally frank admissions broke my heart. And Adam’s parents, though still together, are having problems that his father admits are partly a result of his wife’s “monomania” in caring for Adam. I think that these people have had their idea of a perfect life turned so completely upside down by their children that they have no masks anymore. It was refreshing and heartbreaking at the same time. As in Lexi’s mom’s wish that Lexi die before she does. With the difficulty of finding schools and caregivers who understand autism, it seemed a reasonable position.
From the children there are several amazing moments of clarity, but the most piercing came from Wyatt, who wondered why all the kids at the Miracle Project were in “their own little worlds” before admitting that he too spent too much time in his own world, mostly because with no one around to talk to, he became lonely in the real one.
The director admitted in her Q&A that she was brought in to direct by the mother of Henry, one of the featured kids (and the only one to have Asperger’s Syndrome, a milder form of autism), who had envisioned making a film to reach out beyond the “autism community” in order to help people understand and to do something. Autism doesn’t attract the resources that childhood diseases like diabetes do, and dealing with it isn’t so straightforward. Like the deaf community, there is a growing “culture of autism” (represented by people like Amanda Baggs cited in the Wired article) who don’t think autism is a disease that needs a cure at all. On the other side are parents of children like the ones in this film, who just want some help. As the number of kids with autism grows, and they grow older and require more specialized care, the educational system will need to adapt. And so will the culture at large.
The finale is as big and emotional as we might expect. But since we’ve gotten to know the performers over the previous hour, we know the show is not going to be flawless. Instead, the creative anarchy that seems to be part and parcel of autism made the performance, and the entire film itself, that much more inspiring.
Here is the Q&A with director Tricia Regan from after the screening (it gets louder after the first few seconds and then louder still at around the 0:40 mark, so don’t turn up your volume right away):
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Duration: 12:12
Official site of the film
Official site of The Miracle Project
(9/10)
Tagged as:
autism,
children
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