For Parents

Intersex conditions, Sex assigned at birth and Understanding puberty

Explaining developmental changes may seem an easy task, but you may struggle to find resources if you are the parent of a child with differences in sex development. This means including people born with atypical sex characteristics, be these chromosomal, hormonal and/or anatomical in nature. The problems even within the actual formal sexual education are:

• Normativity messaging about the body and reproductive development, identity and sexuality in and beyond sexuality education curricula;

• Problems stemming from institutional barriers to education, agency and rights recognition for and about people with intersex variations.

People with intersex variations have long been categorised and studied in deeply problematic ways, they have been mainly framed as ‘disorders’ and accordingly, studied via small-scale clinical studies. There are over 40 recognised different intersex variations, including, for example, Partial Androgen Insensitivity Syndrome (PAIS, in which cells do not respond normally to testosterone and related hormones causing incomplete masculinization of the genitals in male infants) and Congenital Adrenal Hyperplasia (CAH, in which overproduction of hormones in the adrenal gland causes masculinization of the genitals in female infants). This broad-based grouping together has strengthened rights-based re-framings of intersex variations and related human experience, showing how humans have a wide variety of possible bodies and sexual capabilities. The exact prevalence is still difficult to estimate. Intersex conditions are not always accurately diagnosed, experts sometimes disagree on exactly what qualifies as an intersex condition, and government agencies do not collect statistics about intersex individuals. Some experts estimate that as many as 1 in every 1,500 babies is born with genitals that cannot easily be classified as male or female. Some intersex conditions are evident from birth, others become evident with puberty. 

Here are some points to bear in mind when one is dealing with intersex conditions during puberty:

1. The discovery of a difference in sex development in adolescence can be extremely distressing for the adolescent and his/her parents and can result in feelings of shame, anger, or depression. Finding a therapist with specific knowledge of intersex conditions may help navigate all these emotions.

2. Adolescents who find themselves struggling with a different puberty path may feel different or left out. They want to know what is happening to them and also want to be part of formal curricula at school, but not as a ‘special’ topic, just acknowledged. Normalizing what they are going through is important, they are still people, they are not aliens, for example, by saying that “not all girls experience menstruations and that’s ok if there is no other health threat”, with or without DSD.

3. Be knowledgeable about atypical puberties. For example, when talking about periods, it is useful to acknowledge that this may not happen for some girls (this could be for a number of reasons, not just due to DSD), or when talking about development in boys, acknowledge that sometimes a penis might not grow without hormone therapy. Those with Androgen Insensitivity syndrome and Turner syndrome go through puberty later than usual or don’t experience all the usual parts of puberty, like hair growth. Some girls with a 5-alpha-reductase deficiency may find their voices deepening or facial hair growing. This will prepare children who may go on to discover their diagnosis later. 

4. Try to avoid blanket statements like “all girls have XX chromosomes and all boys have XY chromosomes”. Most girls do, but some girls with DSD may not. For example, girls with CAIS have XY chromosomes, and girls with Turner Syndrome have X0 chromosomes. Similarly, some boys with DSD may have XXY chromosomes. Another example is saying something like “all girls will have periods” or “all boys grow a beard”, this might lead some children to feel ashamed, less “boys” or “girls” or confused.

REFERENCES

APA Task Force on Gender Identity, Gender Variance, and Intersex Conditions (2006). Individuals With Intersex Conditions. American Psychological Association. Retrieved in 2023, from https://www.apa.org/topics/lgbtq/intersex.pdf

Differences of Sex Development: - A guide to DSD/intersex inclusion for schools. (2021, July 1). DSD Families. Retrieved, 2023, from https://dsdfamilies.org/application/files/9116/3519/2768/July_2021_schools.pdf