Communication skills.

03Original abstract

Lifelong disorders that first appear in childhood can understandably arouse strong feelings and opinions among parents, as well as public anxiety that other families will be affected in the future. Despite recurring public health concerns about autism spectrum disorders (ASDs), the skills necessary for explaining the methodologies and findings of medical science to the public were probably not on the curriculum of most readers of Autism Research. Why is that? Undoubtedly a major factor was a past tendency to parochialism among scientists and medical professionals: research was something that scientists did and only they could properly understand the approach and correctly interpret the significance of the findings. That attitude was no longer credible once the World Wide Web provided families with access to findings and viewpoints that previously were difficult to obtain. In the case of autism spectrum disorders, professionals' past modest enthusiasm for communicating with the public was perhaps also influenced by the perceived relative rarity of the conditions, and the belief that they may have been of little interest to the man in the street. The generally increased availability of scientific information has prompted various governments and academic organizations to stress the importance of improving the public understanding of science. Improving understanding is an especially important task in the field of ASDs, where highly motivated, well-educated parents can spend much time reading about the latest research findings and sometimes act upon the implications of what they have read. Families of affected individuals are vulnerable to: exploitation by individuals and companies marketing diagnostic tests of dubious validity; to claims of cures by unsubstantiated biological approaches; to new behavioral and psychological interventions whose efficacy has not been demonstrated robustly and to a wide array of interventions that sometimes further restrict the experiences of affected individuals. Moreover, the public is vulnerable to media coverage that sometimes fuels undue alarm and anxiety. So what is to be done? One public health approach would be to focus specifically upon whatever putative cause or cure is currently exercising parents, charities or politicians. But such a narrow reaction would be to ignore the history of the field. Since autism was first recognized, there have been innumerable claims about possible causative factors and effective new treatments. Very few of those claims have survived, but we can be certain that new unsubstantiated claims will arise until real answers are forthcoming. Moreover, the overarching challenge is for non-scientists to be able to understand and use a scientific approach to evaluating evidence, but that is a hard goal to achieve in the context of hotly disputed topics that are already associated with strong beliefs. Of course that does not mean that scientists and clinicians should not join in contentious public debates, rather that there also needs to be a more neutral ongoing process of public education about the value of seeking evidence that disproves our favourite hypothesis, of paying attention to control groups and statistical power, of the dangers of erecting auxillary hypotheses to fit our data and the importance of independent replication. Implementing public education about autism and the scientific method more broadly will have to overcome a number of obstacles, most obviously lack of time. Although communicating with the public is now on the agenda of some academic institutions and grant giving bodies, it is not usually a high priority; if public education is to be delivered effectively it needs to be funded, institutionally supported and successful delivery appropriately recognized. The potential for conflicts with the Press Departments of some Institutions and grant giving bodies should probably also be anticipated. It is not uncommon for press releases to grossly overstate the significance of novel findings, which does little to help families assess their true value and their place in the understanding of a complex disorder. Finally, most of us need to polish the skill of explaining complex matters simply, without jargon and in a way that conveys the excitement and importance of scientific research that adds incrementally to our understanding of ASDs.

Autism research : official journal of the International Society for Autism Research, 2009 · doi:10.1002/aur.71