Autism is a “messy” truth.
It doesn’t have the high blood sugar of diabetes, the uncontrolled cell division of cancer, nor the clear brain degeneration of Alzheimer’s disease.
Autism is a condition (or, more accurately, a number of conditions) with as yet, no clear biological markers, and with behaviours as different as any two humans might have on this earth. This is confusing for parents, puzzling for researchers, and a mighty inconvenience for documentary film-makers.
The Canadian documentary The Autism Enigma, which the ABC broadcast last night on Four Corners, presented one theory on the cause of autism. The theory links a number of modern practises, such as immigration and antibiotic use, with gut bacteria and autism.
The documentary left me with a sense of unease. The link between gut bacteria and autism is certainly an interesting area and very worthy of investigation. But the ideas are far more complex – and the research far less advanced – than was presented in the documentary.
I do not question the quality of the science on which this theory is based. Like all research, these studies have good aspects as well as limitations. But the documentary did not mention that the small-scale treatment studies have not yet cleared the first hurdle of scientific discovery – replication – despite having been studied for over a decade. Without replication in large-scale studies, a theory cannot be passed off as reality.
Kerry O’Brien and the Four Corners producers did an excellent job at drawing the attention of the viewers to this fact. However, not all current affairs programmes will have such meticulous standards.
The media and autism
We now know that there is unlikely to be one cause for all of the autisms. The behaviours and biology of individuals with autism are just too varied to stem from the same cause, and to respond to the same treatment.
Some may say that any publicity is good publicity, but I question that wisdom in this case. Unbalanced coverage of one theory in isolation has proved time and again to be unhelpful in medical science. It has the very real potential of generating unnecessary concern and garnering unfulfilled hope.
If this was another condition without a known cause (say, brain cancer), publicising such a preliminary area of research, with all of the knock-on effects of increasing community anxiety, would be considered unethical. I don’t take such an extreme view, but I do want us to think about what effect the reporting of this very incomplete science has on families desperately seeking answers.
The business of autism
One truth that was revealed in the documentary was the “business” of autism.
From the very moment that a child receives a diagnosis (and even before then), families are leapt upon by salespeople marketing therapies and potions that will fast-track their child out of autism. Many of these salespeople may be well-meaning, and hold a deeply ingrained belief that they can better the lives of many. A minority of them are almost certainly not.
Well-meaning or otherwise, the therapies and potions they sell tap into the strongest of human emotions: hope, fear, and perhaps most effectively, parental desire to do anything to help their child.
Documentaries as well-produced as Autism Enigma also tap straight into these emotions. I thank the documentary film-makers for talking about autism, and I commend Four Corners for the sensitive way that the subject was handled.
But I encourage all of us to remember that autism is not a play-thing. These are real people with real lives, who are seeking answers for why their loved one has developed in a different way.
There are many stories around autism: the appallingly long waiting-lists to receive a diagnosis; the enormous cost of therapy; the (in)ability of our society to cater for adults with autism; the extraordinary human stories behind each family with a child on the spectrum.
We shouldn’t shy away from talking about the causes and treatment of autism. But we must always remember to report the entire story in a balanced way, and be mindful of the effect that presenting anything less may have on our audience.
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