Autism Spectrum Disorder is a condition that brings out the best in people.
First and foremost, there are the people who themselves have autism, who bring extraordinary talents, skills and diversity into the world.
Then there are the family members, therapists and support network that surround the person with autism. It is utterly inspiring to see the love and drive of these people to do everything they can to help another person thrive in the world.
Then there is the broader community. There is just something about autism that touches the core of the human condition so forcefully that many are desperate to help. This passion is never more clear than when we see the sheer number of people who claim to have the answer to how best to help people with autism.
Complementary and alternative medicine
A boom area is the use of complementary or alternative medicines. These are medicines that are based on traditional (often, non-Western) medicine that are used with (complementary) or in place of (alternative) conventional treatments.
There are those who claim that vitamin treatments, bowel bleaching, hyperbaric oxygen therapy and various shades of homeopathy can ‘cure’ autism.
All of these ‘treatments’ are scientifically unproven. My recent review of complementary and alternative medicine use in autism found that only one ‘treatment’, melatonin for sleep problems, had any conclusive evidence for effectiveness.
And this is where the flipside of the ‘desire to do good’ rears its head.
Despite having no evidence for effectiveness, the majority of people with autism have received some form of complementary or alternative medicine in the hope of alleviating autistic symptoms.
And who can blame any family for giving these unproven ‘treatments’ a try? Most of us would do anything and everything to help our child live the happiest and healthiest life possible.
But that desperate desire is also the very serious problem. That benign figure, which tells us that the majority of people with autism are given therapies that have absolutely zero scientific evidence for their effectiveness, hides a very high emotional and financial cost to families.
Evidenced-based interventions for autism are extraordinarily expensive, with some estimates putting the cost at upwards of $30,000 per child per year. Allowing that figure to inflate further by encouraging untested therapies – which may or may not be effective or safe - is against just about every code of ethical standards to which health professionals and scientists sign up.
There is now excellent scientific evidence that many behavioural interventions can provide great benefits for people with autism. The Early Start Denver Model, the UCLA model of early and intense behavioural intervention, and various aspects of Speech Pathology are just three examples that are being successfully applied in many organisations around Australia and the world.
But there are dozens more ‘treatments’ – vitamin combinations, bowel bleaching, homeopathy, hyperbaric oxygen therapy, chelation – that are being sold to families, without any hint of scientific evidence that they will improve their lives. The already tired and anxious minds of parents are burdened further by the fear of missing out on the silver bullet that may help their family.
The importance of science
The world of autism is full of happy stories that show just how wonderful humans are. To claim that any of these wonderful outcomes are due to a ‘quick fix’ is to downplay the efforts and courage of people with autism and their support networks.
Science is critical to our mission of helping people with autism reach their full potential. The past 20 years have seen great strides in this regard, and I have never been more confident that even greater scientific advances will be made within our own lifetimes.
Critically, science is accessible to everyone who truly wants to learn it. There is no conspiracy of scientists trying to keep CAM practitioners from testing their claims. My experience is quite the contrary. Scientists in this field are desperate to help families touched by autism. It doesn’t matter the background of the therapy, as long as there is scientific evidence for its effectiveness, then it will be promoted as such.
The ‘industry’ of scientifically unproven therapies that surround autism is worrying. That this seems to be an accepted part of having a child with autism is a scandal. We wouldn’t accept this state of affairs with any other condition (say, brain cancer). Why, then, do we accept this for autism?
I love that anyone can formulate theories about autism. Science works best when it’s in the hands of everyone, and I have absolutely no doubt about the well-meaning intent of the vast majority of people in this field.
But I despair when I see theories advanced without any urgency to acquire evidence.
Quite simply, there are no excuses for not testing a therapy. While time and resources will always be in short supply, obtaining evidence is a step that cannot ethically be skipped.
Excellence in health care relies on scientific evidence, and nobody is exempt from this.
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