Dr. Michael Yudell, an associate professor at the Drexel School of Public Health, brings an historical and ethical viewpoint to the autism conversation. His work helps put current thinking and public debate on autism into perspective. He is currently writing a book, Ages of Uncertainty: Autism Spectrum Disorders and the Search for Cause and Cure, which explores the history of ASDs. Dr. Yudell has also published books and presented research on the history of the genome. A related area of focus for Dr. Yudell is the ethical communication of research findings.
The disorder now known as autism was not described until well into the twentieth century, when, in 1943, Leo Kanner, a well-known child psychiatrist at Johns Hopkins described the syndrome. After World War II Kanner coined the term “refrigerator mother” arguing that cold, unemotional mothers stunt children’s emotional development and were a root cause of autism. Although it may be difficult to believe, this psychogenic explanation for autism was not a fringe theory. It was believed to be state-of-the-art science that endured for decades, and many parents, particularly mothers, suffered in its wake.
Kanner’s ideas about the causes of autism began to shift in the 1960s, influenced in part by many of the parents whose children were under his care. Kanner’s friendship with the physician Jacques May, who had twin autistic children, helped promote that change. May, who help found the League for Emotionally Disturbed Children, which was one of the first funders of non-psychogenic autism research, wrote material that rejected the “refrigerator” hypothesis.
Despite the League’s efforts, a generation later we still know so frustratingly little about the causes of autism. In the 1990s, with the refrigerator hypothesis on the wane, a new target of blame was identified – vaccines. Behind this new theory was Andrew Wakefield's now discredited research that posited a link between the measles, mumps, rubella (MMR) vaccine and autism.
Yudell’s work, in part, tracing this shifting focus of blame.
“You see this inversion in the 1990s where people want to blame the doctors, blame the science, blame the vaccine preservative,” Dr. Yudell said. “For those who are dismissive of the anti-vaccine movement as it relates to autism, I urge caution because it’s coming from a historical place in which there’s been a half-century of abuse.”
Today, research is underway looking at the complex causes of autism. But, as new research is published, there is a new challenge: communicating research findings in an ethical and appropriate manner. This is an often disregarded, yet important, area of research according to Dr. Yudell.
“With so much uncertainty about the root causes of autism, the importance, and potential, of any morsel of data to make a meaningful change in the understanding and treatment of autism can be inflated by a public desperately waiting for answers,” said Dr. Yudell.
A workshop on the ethics of communicating research findings for autism was hosted by Dr. Yudell, Dr. Craig Newschaffer, and the School of Public Health in 2009 at the National Constitution Center in Philadelphia.
The workgroup, funded by NIH and Autism Speaks, brought together a diverse group of autism stakeholders and identified four key areas for research on the ethics of communicating autism risk:
• The role of clinicians and autism service providers in disseminating findings
• The roles for researchers and the media in balancing the communication of scientific advances and continuing uncertainty
• Tailoring risk information to diverse populations and communities
• Best practices for disseminating research results on risk factors to study participants to disseminate results to study participants
Related work by Dr. Yudell includes funding from the U.S. Department of Health and Human Services to conduct research examining the challenges to ethical development and distribution of vaccines during public health emergencies. This work explores how perceived conflicts of interest concerning vaccines may influence public response to information, interventions or recommendations. A workshop on the research and topic is slated for later this year. A similar workshop on the ethics of communicating research findings for autism was hosted by Dr. Yudell and the School of Public Health in 2009 at the National Constitution Center in Philadelphia.
“As health professionals, we owe it to the public we serve to define our values and to articulate governing ethics that will hold us all responsible for our actions,” said Dr. Yudell. As research moves forward, the challenge for researchers and their partners is to balance good by doing no harm in releasing research findings.