COMMENTARY

Is There an Autism Epidemic?

Howard Markel, MD, PhD

Disclosures

February 07, 2007

The term "epidemic" has been with us for much of recorded history. Over the past few decades, however, the definition of the term has expanded to include a description of rapidly rising dilemmas that were formerly considered in the exclusive realm of chronic diseases, social problems, and even behaviors. Witness, for example, the public health clarions about the epidemic of lung cancer, associated with the rise of cigarette smoking, or the epidemics of obesity, handgun violence, and substance abuse.

When it comes to developing public health campaigns against specific health problems, the status of epidemic is definitely worth seeking, because governmental policies and research programs are typically developed to respond to epidemic health threats.

And hopefully, something gets done to ameliorate such burgeoning problems, which brings me to the topic of autism and its rise in incidence over the past 15 years. One would have to live under a rock not to notice the growing concern over a potential epidemic of autism.

Indeed, the numbers are compelling. In 1990, autism was diagnosed in about 4.7 out of every 10,000 American children. By the end of 2006, that number had risen to approximately 60 out of every 10,000, which translates to 1 out of every 166 American kids.

A recently published book, "Unstrange Minds: Remapping the World of Autism," by George Washington University anthropologist Roy Richard Grinker, critically questions whether there truly is an autism epidemic or, perhaps, whether it is simply better recognition of an issue that has long been with us but not widely noticed. Could the decided rise in autism cases that parents, schoolteachers, and child health professionals are seeing in recent years be the unintended consequence of changing clinical definitions, policy changes, and heightened awareness among those who spend significant time with children?

Using the tools of an anthropologist, Grinker explores autism and the role it plays in cultures around the world, and endeavors to make sense of the increase in autism cases being reported in Africa, East Asia, India, and the United States. Along the way, he makes a number of fascinating points about how doctors and health professionals understand issues pertaining to mental health and how cultural shifts can influence such understanding.

Four major sea changes in the social and cultural responses to autism, according to Grinker, include the following:

  1. Doctors have developed more broadly interpreted definitions of autism over the past few decades. If one were to consult the successive editions of the Diagnostic and Statistical Manual of Mental Disorders, one cannot help but notice that each description is written to include more and more people.

  2. The milder condition of Asperger's syndrome and "pervasive developmental disorder, not otherwise specified" (PDD-NOS) were added to the DSM diagnosis of autism in 1994 and 1987, respectively. These additions may have contributed to 50% to 75% of the increase in the diagnoses of autism

  3. American schools have long been required to report information about the numbers of students requiring special educational services. But autism was not added to this list until the 1991-1992 academic calendar. In 1995, 22,445 US students were receiving special services related to autism; in 2004, that number jumped to 140,254.

  4. In some states, there is an increasing array of financial incentives to having a diagnosis of autism, such as one's potential eligibility for Medicaid. By contrast, there has been a decided lack of incentives, state insurance, and availability of affordable health programs for the more mundane diagnosis of mental retardation over the same time frame.

As more people learn about autism, Grinker argues, there has been less stigma associated with this brain-based disorder, and more people are now willing to be open about the condition. He also argues that doctors and other health professionals today might be more willing to label a child autistic -- as opposed to mentally retarded -- if they believe such a label might get that child the educational services he or she needs.

Grinker has a 15-year-old daughter with autism. In part, this book was his search for the truth about the condition that struck his child and an attempt at making sense of its greater implications. He hoped he would find a distinct culprit, an enemy that could be combatted and defeated.

He concludes that autism is a disorder of "multiple causes, shifting definitions, and a scientific reality we are only just beginning to understand."[1]

After reading this impassioned and thoughtful tome, readers will conclude that whether one classifies autism as an epidemic or simply a major mental disorder, there is much more to be learned about this complex and puzzling condition.

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