Guest post by Michael Yudell, PhD, MPH, director of the Program for the Study of Public Health Ethics and History, at Drexel University’s School of Public Health, Philadelphia, and a fellow in its A.J. Drexel Autism Institute. Last year, Dr. Yudell and colleagues published “Priorities for Autism Spectrum Disorder Risk Communication and Ethics,” in the journal Autism. The report grew out of a two-day workshop supported by grants from Autism Speaks and the National Institute of Environmental Health Sciences.
Autism has seen its share of claims about causes and cures, from refrigerator mothers who painfully bore the blame for their children’s condition to the notion that vaccines can explain the recent rise in autism prevalence. Such claims can confuse the public and do more harm than good. Admittedly, scientists still don’t fully understand autism’s complexity of causes, and studies are even examining whether vaccines may in fact be a contributing factor to autism in rare cases. So it’s understandable that claims based loosely or not at all on science fill the void and attract public attention.
When it comes to clearly identified risk factors for autism spectrum disorder (ASD), we have several. They include being born to older parents, extreme prematurity or low-birth-weight, and exposure during pregnancy to certain drugs such as thalidomide and valproic acid. Scientific evidence is likewise strong for another possible risk factor – maternal infection or exposure to rubella during early pregnancy. Around the world, scientists continue to pursue research on many other suspected risk factors. We have good reason to hope for more solid information in the coming decade.
This ongoing research is both exciting and incredibly important. But it also gives great pause to many of us in the research community. We know too well the ways in which early, incomplete findings – as well as plain-old junk science – can grab public attention.
With such concerns in mind, our research group at the Drexel University School of Public Health has been collaborating with stakeholders in autism advocacy and research communities. Our goal is to develop a responsible approach for handling the forthcoming wave of findings on autism’s possible causes and risk factors.
To that end, Autism Speaks and the National Institute of Environmental Health Sciences funded two major workshops to foster research in this area by building new partnerships with a diverse set of stakeholders. We published our first report in the journal Autism late last year.
Our “Working Group in Autism Risk Communication and Ethics” addressed several concerns. What are the best ways to communicate emerging risk information? How does this information change as it makes its way from “scientific finding” to “popular belief”? What do we mean when we say “risk,” and how can we help families understand this concept?
Over the course of our workshop, the working group identified four priority areas for further attention.
First, we found that clinicians and other service providers play a pivotal role in communicating risk to families and individuals affected by autism. We called on professional organizations such as the American Academy of Pediatrics and the American College of Obstetrics and Gynecology to develop continuing education programs that help clinicians better understand and convey what is truly known about autism risk factors. This will require the creation of a centralized resource that compiles and continually updates scientific findings.
Second, the group called attention to the relationship between scientists and the media. We see a great need to help the media make autism risk information more accurate and understandable to the public. To that end, the working group called for better media training for autism scientists. We also called for public and private grants to fund the dissemination of research findings in more reliable and responsible ways. This should include the development of clear guidelines for how to best report preliminary findings.
By definition, preliminary findings require confirmation by further study. Often, follow-up research ends up disproving or qualifying early findings. For this reason, our group is particularly concerned about preliminary findings that make a big “media splash.” As they’re widely reported, these reports can form enduring public impressions about autism – impressions that can prove difficult to dispel if further study disproves those early findings.
Third, our working group identified a great need to tailor autism risk communication to the needs of different communities and populations. Groups differ widely in their perspectives, attitudes and experiences. Often these differences reflect education, cultural values and belief systems. We need to develop culturally sensitive materials explaining autism and its risk factors. We also see social media and other Internet resources playing a tremendous and growing role in disseminating this information.
Finally, our working group discussed the challenges of reporting research results to the families and individuals who participate in studies. We affirmed the benefits of communicating results that can affect an individual’s ongoing treatment or otherwise improve quality of life. Clearly the clinicians running a study should be a resource to answer questions. They should communicate with families in an honest, open way. But what about research findings that have the potential to cause harm? This can be the case, for example, with preliminary findings or findings that lack clear implications for action. Harm can result when such results turn out to be wrong or lead families to pursue “unnecessary diagnostic odysseys” (seeking to diagnose an apparent abnormality that has no true bearing on their condition).
In conclusion, my colleagues and I are excited that the coming decade will offer new insights into the causes of autism. This information will have the potential to transform lives by guiding the development of earlier diagnostics and treatment.
But we also see the need to avoid the mistakes of the past. There has been too much public misunderstanding of autism and what does or does not trigger its development. Let’s pay the same rigorous attention to the challenges of autism risk communication and ethics as we do to the scientific challenges of understanding the disorder.
Editor’s note: We’d like to know your thoughts on how scientists, Autism Speaks and the media can better communicate autism research findings. Please leave a comment below or email us at GotQuestions@autismspeaks.org. For more perspective on autism risk factors, please also see these related science blogs. Dr. Yudell also writes The Public’s Health blog for the Philadelphia Inquirer. You can follow his posts on Twitter @publicshealth.