By ANDREW WHITEHOUSE
There are few experiences more life-changing than having a child.
Nine months of anticipation are followed by hours of intense excitement, until a squawk and a squeal signal the beginning of a new life – for all of you. There, in front of you, lies a human being, who not only you have made (!), but who you will nurture, support and love through the most vulnerable times of their life.
This is why having a child with developmental problems is so gut-wrenching. Parents imagine the potential distress that their beloved child may experience, and often the hopes and dreams that all parents implicitly have for their child (happiness, health, grandchildren), and even those they had for themselves, need to be re-written. Guilt, heart-ache, and grief.
This is a common tale in my own particular area of research interest, autism, but could easily apply to other developmental conditions such as Downs Syndrome, ADHD and language disorders.
These tales drill down to the core of the human condition and touch people so personally that many are desperate to help.
This passion is clear to see in the sheer volume of theories about what causes children to develop differently, and what can be done to help them reach their full potential.
Taking autism as an example, there exists theories that vaccines, wi-fi, electronic media, and milk, cause the disorder. We also have people claiming that diet changes, bowel bleaching, and homeopathy can ‘cure’ the condition.
All of these theories are scientifically unproven.
Many people view the airing of these theories as ‘fair game’, and for a long time I was of the same point of view. “After all”, I thought, “these are well-meaning people who are desperately trying to help others in need. What’s wrong with that?”
But I have been worn down.
It is troubling to see families believe theory after theory, and try treatment after treatment, in the hope that these may help their child. It’s distressing to see hopes dashed time and again, but only after significant amounts of money has been expended. The needless drain on the energy, time and emotional capital of families breaks just about every code that we, as health practitioners and researchers, stand for when we seek to help those in need.
I’m not in the camp that believes that unproven theories and therapies are the product of people with nefarious intent. Not at all. I believe that the vast majority of these people are well-meaning, and like the rest of us in this field, are seeking to alleviate the suffering of others.
But I do want these people to change their ways.
By all means, people can formulate theories about the causes and treatment of developmental disorders. Doing so is vital to progress, and even the most well-established theories – gravity, evolution, relativity – once started with someone’s wacky idea.
But what people must do is test their theories. It is no longer acceptable to begin and end with the proposal of a theory. If you have a theory, then scientifically test it.
The most marvellous aspect of science is that it is accessible to everyone. The basic scientific method is not complex, and can be understood by everyone who is willing to learn.
Other columnists have described ways that families can distinguished between a pioneering treatment and quackery. In my eyes, the clearest sign that a theory or therapy may be the latter is a lack of scientific evidence (and a lack of desire of the theory holder to seek scientific evidence).
There is no conspiracy holding back previously non-researchers learning the scientific method. Science is accessible to everyone who truly wants to learn it. There is no ‘establishment’ that is silencing the truth. I don’t know of a single researcher or health practitioner who doesn’t want to do all they can to help families. There can no longer be excuses about ‘lack of time’ or ‘lack of resources’ for scientifically testing theories. Obtaining evidence is the single most important step for theoreticians, and time and resources must be prioritised to this task.
Here’s my challenge to those who have a theory: scientifically test your theories, or stop promoting them.
We are all on the same team, and we all want the same thing. But by not taking up this challenge, you are harming the people you hope to help.
Andrew Whitehouse is the Winthrop Professor at the Telethon Institute for Child Health Research at University of Western Australia. He does not work for, consult to, own shares in or receive funding from any company or organisation that would benefit from this article, and has no relevant affiliations.