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Interpreting research results:
The dangers of scientific jargon  

Melissa Colsman, M.A. and David E. Sandberg, Ph.D.
Psychiatry & Pediatrics
School of Medicine and Biomedical Science
University at Buffalo, The State University of New York

R

ecently, Dr. Knickmeyer and colleagues conducted a research study involving people with congenital adrenal hyperplasia (CAH); the study was titled “Androgen and autistic traits: A study of individuals with congenital adrenal hyperplasia.¹” For parents of affected children, titles such as these can sound quite alarming – leaving parents to wonder if, just because their child has CAH, he or she might also have or develop autism. Autism is a developmental disorder characterized by severe impairment in communication, social interaction, and creative or imaginative play. In short, the answer to that question is “no.”

Prior to conducting this study, other research showed that autism is more prevalent in males than females. It was thought that increased testosterone during prenatal development might be a factor in why more males have autism than females. The authors attempted to test the hypothesis that autistic traits (eg, poor social skills, communication, imagination, and attention switching) are associated with high prenatal testosterone levels by measuring those traits in people whose prenatal testosterone levels were higher than average due to CAH.

Sixty research participants with classical CAH (34 females, 26 males; 53 with 21-OH deficiency salt-wasting CAH), and 49 unaffected relatives (24 females, 25 males), ages 12 to 45 years, were recruited through pediatric endocrinology clinics and a CAH support group in the UK. Information regarding participation rates was not recorded. Each participant filled out a questionnaire called the Autism Spectrum Quotient (AQ) that assessed five areas: social skills, communication, imagination, attention to detail, and attention switching. On the AQ, scores can range from 0 to 50 with higher scores indicating more characteristics labeled as “autistic.” A score of 32 or above in the general population is the point that triggers researchers and clinicians to do a more thorough test for autism.

After participants completed the questionnaire, researchers compared the scores of four groups of participants: CAH-affected females, unaffected females, CAH-affected males, and unaffected males. They found that unaffected males in this study had significantly higher totalAQ scores than unaffected females. In addition, females with CAH scored higher (that is, in the male direction) on total AQ than unaffected females. In contrast, total AQ scores of males with and without CAH did not differ statistically.Another way to look at it is shown in the figure below.

As you can see, on average, while affected females scored higher than the unaffected females, none of the groups scored in the “clinical range” (the clinical range is the range at which you might suspect participants were autistic). In other words, this study shows a subtle shift in some behaviors for girls and women who have CAH. Females with CAH showed AQ scores similar to that of males (affected and unaffected by CAH); it did NOT show that they behaved like individuals with autism or associated disorders in the autistic spectrum.
 

Studies like this one help illustrate an important lesson to keep in mind while reading research: the goals of science and the goals of parents are often very different. Much of the scientific research on CAH was initiated so that we could learn about how biological factors (for example, androgens) affect our behavior and psychological development. Scientists who study and conduct research on CAH are most interested in general principles that influence human development. In contrast, your goal as parents is quite different: you are interested in how your own child will grow and develop. There is a lot of research and information out there that speaks to the general principles of development for people with CAH and some of this will apply to your son or daughter; other parts won’t. Your child is special. He or she, with your help, will grow and learn. And you’ll learn more about your son or daughter as he or she grows.

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