Anyone who has had to address the issue of autism and vaccines can vouch for the fact that simply relaying information is not enough to change someone’s behavior. The field of autism is not unique in this sense. A 2011 study found that informing people about the dangers of climate change actually lowered their perception of the risk1. Similarly, providing a scientific explanation of synthetic biology doubled the proportion of people who perceived more risks than benefits, a 2009 study found.
We have to accept that public opinion is not based on information alone. Rather, it incorporates a person’s trust for the information source and their pre-existing beliefs. This is important because it affects the types of research projects that get funded, as well as the types of treatment programs and research studies that families are willing to participate in.
John Elder Robison provided an important example in his eloquent address at the 2014 International Meeting for Autism Research. “There’s the continuing reality that lay people in the community believe that scientists want to do genetic research to eradicate autistic people,” said Robison, who has Asperger syndrome. “That may be the farthest thing from a researcher’s mind, but the fact that the public believes it is a disaster for researchers.”
How we communicate is also important when we try to engage caregivers in treatment plans — particularly ones that take a long time to pay off. A new study by my colleague Nathan Call and his team found that parents might place less value on these ‘delayed outcomes’ than researchers do2. In other words, simply informing them of the benefits of a behavioral intervention is not enough to keep them in the treatment program long-term.