I was at a party on my sister’s farm when I first heard about Dr. Derrick MacFabe. An old friend of mine had just met him, and while we fed my sister’s scruffy donkey, he told me about Dr. MacFabe’s work and his unique bacterial perspective on autism. At the end of the conversation, my friend said, “Somebody should do a documentary on this kind of work”, and I thought to myself, “Maybe it’ll be me”. I’d been interested in autism for a while; my husband’s family has been touched by it and I know firsthand the challenges and sacrifices it entails. As a mother of two small children, one born during the process of making this documentary, I share the worries of many parents warily eyeing the statistics. The numbers are so high, its onset so seemingly random, but there is no solid cause or official “things to avoid” list. And what do those numbers mean for the future? Ten percent of children in North America being diagnosed with some form of autism heralds a huge new health care problem. I wondered where we were in finding answers.
Not long after the farm party, I spoke with Dr. MacFabe for the first time and began sifting through the first portion of giant amounts of research. Looking back, I wonder if I was not a little naive about venturing into a documentary on autism. The core difficulty in tackling this issue lies in its name: “Autism Spectrum Disorder”. A spectrum, Autism covers a vast territory. For people who live with it, autism can range from a treasured heightened awareness, to a life of considerable struggle, and everything in between. What’s more, the science is just as broad; its enormous complexity is worthy of a weekly program, rather than a single one-hour show, and information changes almost daily. But more than the challenge of the content, there was the emotion of the thing. The families of those with autism struggle to understand the whys and hows, often passionately embracing theories that explain their own circumstances. And those theories are legion.
Even so, we moved forward. I may have been naive as I waded in but my naivety never included a delusion that this was easy, or that there was a definitive answer. With its wide-reaching physiological symptoms touching immune-system, cell function, brain inflammation, genetic expression, metabolism, and of course gastroenterology (to name but a few), autism is a slippery fish. A film on the subject couldn’t possibly cover everything – but it could introduce a new lens through which to examine the problem. So, discovering the work around gut bacteria was a captivating way in.
And as it turned out, despite the Niagara Falls of material to wrap my head around, I really loved the science. It was, quite literally a whole new world. A bacterial cause of autism demands that we consider the humble microbe in a much grander way than most of us ever have. Research around the gut microbiome shines a light on the living creatures on us and in us that need consideration and attentive care; an entirely new eco-system whose health and balance is integral to our own. A system that, as one scientist explained, was not unlike the population of a typical big city: there are good and bad elements, and generally the good elements keep the bad in check and everything runs pretty well (in a comforting cliché, the good will always trump the bad – there just has to be enough of it). A city with more bad elements than good is dysfunctional. And so, the gut. And, so too, the rest of the body.
What got me most was that this was a fresh path in medicine, one that is so novel, yet somehow so obvious. After all, haven’t we always known that we are what we eat? That we have to listen to our gut? All those old adages are actually somewhat revolutionary, reminding us that there is and always has been a gut-brain connection. GI symptoms are so common in autism, but it’s traditionally been the behaviours of autism that medicine has focused on. But lately, publications are exploding with links between gut bacteria unbalance and all sorts of problems: inflammatory bowel disease, ulcerative colitis, obesity, and neuropsychiatric disorders like depression, schizophrenia, and now autism. Our “world within” is offering some incredible insights into causation and even, dare I say it, hope.
That was the thorny part: the hope lying just below the surface of this and other research that implies viable treatment. Earlier ideas that autism is a static brain disorder, that it is unavoidable and untreatable, are changing. With so many families waiting for a breakthrough, hope is nourishment to go another day, but it’s always exercised with caution, and our film couldn’t suggest that a cure was right around the corner.
In the end, it is really the parents that are suggesting their children can improve. The remarkable mothers in the film are tirelessly pushing forward research on the bacterial theory of autism. They represent countless other parents who have agitated for research, and this, for me, was the big revelation: mother scientists who educate themselves to the highest degree so they can take the best care of their child. Ellen Bolte’s extraordinary scientific work based on her own son’s case continues to be cited in academic papers, and has prompted new work on bacterial connections in autism. Never mind that she researched and helped write the paper while raising four children, one of whom was severely autistic.
These bold steps forward into uncharted territory – by scientists and lay people alike – were the most amazing part of working on this film, and what I think will be a crucial part of untangling the enigma that is autism.