Thursday, March 6, 2008

Autism: The Musical

(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(9/10)

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