When Marion Gruner (Co-Director) brought up the idea for a film on research into the causes of autism, it was clear that this was a mystery story. Even today, two years later, if you check it out on Wikipedia you get, “Many causes of autism have been proposed, but understanding of the theory of causation of autism and the other autism spectrum disorders is incomplete.” A resounding understatement. Mainstream research seemed to be concentrating on finding a genetic cause, and outside-the-mainstream reports are throwing up culprits such as heavy metals, PCBs, phthalates and phenols in plastics, pesticides, flame retardants, alcohol, smoking, diesel exhaust, and vaccines. And now here was this theory being put forward pointing toward bacteria in the gastro-intestinal tract (otherwise called “the gut”, for short) as the possible source of the disorder.
Still, the more we looked into it the more plausible the theory, and the characters, became. Among the clues were the disproportionate incidence of autism in Toronto’s Somali community, one of several communities of recent immigrants from undeveloped countries that seemed to have more that their fair share of autism. A number of Somali parents had organized themselves into a self-help group and were very generous with their stories – the first of many amazing parents of autistic children we would meet.
This was something that quickly became a theme: parents of autistic children seemed to be way out in front of the medical community in thinking about treatment for their kids. Without having a lot of previous knowledge about autism, and certainly no scientific expertise in it, the first thing I saw on beginning research for this film was that it was a medical minefield. To even talk about something you have to define it, and it’s hard to say what autism actually is, because biological indicators are lacking. We can say that autistic children are different from “neurotypical” children but scientists are just getting underway to define that difference medically, biologically, behaviourally, and genetically. There’s a sense of urgency – because numbers are rapidly rising, and because parents and parents-to-be are worried, and because there is so much need to find help in families with autistic children.
I’m acutely aware that tackling something this big and complex risks falling into simplifying it in a way that is a disservice to, or worse, an insult to, the many families who have made a commitment in their hearts to one answer or another in their efforts to find a strategies to cope with autism’s effects.
One problem we had as filmmakers was finding any overall authorities, the experts with the mile-high views of the problem who were able to synthesize the entire current state of research. Unfortunately the field seemed to be fractured into chambers of belief and interest. Therefore we settled on some medical wise men and wise women who certainly had their own perspectives on the most promising research but who also advocated a path of collaboration. And they shared a sense of urgency to try out working hypotheses that were developed by listening to parents.
This film is about scientists who are using a strategy of working backwards – to take one of the major symptoms of autism, gastro-intestinal troubles, inquire into it, and then work forward to how that might cause damage to the brain and be linked to other symptoms. The area of research we focus on – looking into a bacterial cause for autism – is just the tip of the iceberg of the medical research going on. We realized early on that we weren’t going to be able to provide the viewer with confident “answers” to the autism enigma, but we thought it was important to ask the question anyway: “What if bacteria in the gut are at least part of the problem?”
The parents featured in the film turned out to be remarkable Parent-Scientists: Adar Hassan, with her friend Idman Roble, are leading lights in an autism parent support group among Somali immigrants, and who, in addition to raising autistic sons, are participants in a study looking into why their community should be suffering a statistically higher rate of autism. Or Ellen Bolte, who, when she received a diagnosis of autism for her son, filled a filing cabinet with research, grappled with a disbelieving medical community, and eventually found doctors who would collaborate with her in a study investigating her theory. And Hanne Bjorg-Walker, who left behind a career in finance to pursue a biology degree when she needed answers for what she could do to help her three children on the autism spectrum. Today she works at a clinic she co-founded in Norway that assists nearly a hundred families to implement and study biomedical techniques that will improve their children’s autistic symptoms. These parents were not content with a diagnosis that also came with the news, “It’s autism, and there’s nothing you can do about it.”