Healthy World, Healthy Nation, Healthy You

Autism Spectrum Disorders: Is this an Epidemic?

Jennifer A. Pinto-Martin, PhD, MPH
MacInnes Professor and Chair, Department of Biobehavioral Health Sciences
University of Pennsylvania School of Nursing and Perelman School of Medicine Executive Director, Center for Public Health Initiatives
Director, Master of Public Health Program
Director, Center for Autism and Developmental Disabilities

Background:

JenniferDr. Jennifer Pinto-Martin is the MacInnes/Independence Professor and Chair of the Department of Biobehavioral Health Sciences at the University of Pennsylvania School of Nursing, with a secondary appointment in the Department of Biostatistics and Epidemiology in the School of Medicine. She is the Director of the Center for Autism and Developmental Disabilities Research and Epidemiology (CADDRE), one of six such Centers funded by the National Centers for Disease Control and Prevention. She serves as the UPenn Principal Investigator on the Study to Explore Early Development (SEED), designed as a multi-site study to explore risk factors for ASD. In addition, Dr. Pinto-Martin is the Executive Director of UPenn’s Center for Public Health Initiatives which houses the interdisciplinary Master of Public Health Program, drawing faculty and students from many schools on Penn’s campus and offering dual degrees with Nursing, Medicine, Dental Medicine, Social Work, Urban Planning and Law.

Dr. Pinto-Martin is a member of the American Public Health Association, the Society for Epidemiological Research, the American College of Epidemiology and former President of the Society for Pediatric Epidemiologic Research.

Overview:

The Center for Disease Control (CSC) released its most recent surveillance data on Autism Spectrum Disorders (ASD) last month and the overall reported prevalence is 1 out of every 68 eight (8) year olds (1 out of 42 boys and 1 out of 189 girls). While the rise seems to continue unabated and the worry of the “epidemic” of autism continues to receive media attention, it is important to understand the methodology behind the reported rates. How did researchers come up with this number?

The CDC rates are based on a record review system established in the 10 to 12 states that participate in the surveillance program which means that they review the records of 8 years old to count the number who have autism. The system trains abstractors to review the medical and educational records of children to look for information related to autism “triggers” or behaviors that might indicate ASD such as problems with communicating or fixation on a certain object or insisting on a certain way of doing things. This system has been around since 2000 when they counted 8 years old children who had been born in 1992.

As awareness of ASD increases and the educators and health care professionals become more able to recognize the signs and symptoms of ASD, the records are likely to capture these “triggers” more fully. This alone will result in an increase in the numbers of children who have the label  of ASD, even if nothing else changes.  As time passes, everyone has become more aware of the “spectrum” of behaviors, signs, symptoms that are associated with this problem.

We continue to search for the cause of ASD and to understand the risk factors (what makes one person more susceptible to this problem than others) that contribute to its’ development through several large scale epidemiologic studies, studies that look for links with particular factors or exposures and a particular disease.

We have learned a great deal about the large role that genetics (what you are born with) plays in the disorder and we are beginning to uncover environmental (what you are exposed to post birth that may make you vulnerable to developing this problem) factors that may contribute to its development as well, such as older maternal and paternal age, immune disorders, preterm birth and complications of pregnancy and labor and delivery.

It is important the we understand the prevalence data (which tells us how often in a population or what percentage of say 100 people, we will see an individual with this problem) in the context of increasing awareness and improved diagnosis and that we continue careful studies of risk factors that may lead to prevention strategies down the line.

At the same time, we must be aware that children and families need help now and services and therapies need to be developed and made accessible to all.

3 Key Points:

1.Rise in prevalence is primarily a function of awareness and changing/ expanding diagnostic criteria.

2.We know autism has a strong genetic component and we are beginning to uncover some of the environmental risk factors through large scale epidemiological studies such as the Study to Explore Early Development.

3.No matter the reasons for the increase in prevalence, families and children on the autism spectrum need services to support their education and health

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