New research: sex development disorders affect the mind as well as the body

Montreal, August 12, 2015 - While it may not shock you to learn that children born with disorders of sex development (DSD) face challenges, Concordia University researchers have confirmed that these go far beyond the physical.

In a paper published in the journal Hormone and Metabolic Research, psychology professor William M. Bukowski and his co-authors Elizabeth McCauley and Thomas Mazur examine the potential effects that these disorders can have on children’s and adolescents’ peer relationships.

The term “disorders of sex development“ covers a range of conditions, from physical malformations of the genitalia to hormonal conditions like complete androgen insensitivity syndrome, which results in a physically female body but an XY chromosomal makeup.

Based on a review of existing studies that explore adjustment in individuals with DSD, the Hormone and Metabolic Research paper initially considers the importance of peer relationships for elements like socialization, self-concept and confidence. It then moves on to examine the ways in which individuals with DSD are put at a disadvantage because their physical differences make them feel separate from their peers.

“If you’re not like other people, then the likelihood of forming positive relationships is lower,” says Bukowski. “I always feel that I should apologize for that finding, but it’s the way things are.”

So what can be done to increase the chances that these children have the same social experiences as their peers?

Bukowski says one positive step would be to raise public awareness of the diverse nature of the physical body, including genitalia. “For someone to say, ‘I’m not like other people’— no one is like other people! There’s an enormous variability. I think this is something young people should be more aware of.”

Another positive step would be to provide practical support and coping mechanisms for DSD-afflicted individuals. “For example, having stalls in locker rooms where they can dress privately,” says Bukowski. “Lots of schools have done this, but not all.”

The creation of support groups where people with DSD can share information and get to know each other is also a positive move — one that Bukowski says is becoming more frequent and effective  through the use of social media.

In the Hormone and Metabolic Research paper, Bukowski and his colleagues conclude that there is also much scholarly research to be done in this area. They suggest possible research directions, including a long-term study that would follow people with DSD over several years, and further investigation into factors that help promote feelings of similarity in spite of physical differences.

Bukowski is also hoping that an interdisciplinary conference on the topic, being held at Concordia this fall, will help generate important findings.  The conference will be held at Concordia on October 16.  Details will be available soon at the web site of the Centre for Research in Human Development.