Easing transitions with gender assignment

Gender assignment can be difficult when a child is born with a disorder of sex development. Obviously, clinicians and parents try to make the decision that is right for the child. Despite the best efforts of caregivers, however, occasionally a child with a DSD will announce a desire to change gender.

When this happens there is a lot physicians can do to help the child and family adjust.

Under modern standards of care for DSD, decisions about gender assignment increasingly take into account available predictions about the child’s gender identity as he or she grows. For some conditions, such as 46,XY complete androgen insensitivity syndrome or 46,XX congenital adrenal hyperplasia, clinicians can predict gender identity development with some confidence. Even so, predictions are not perfect. For example, around 95% of 46,XX children with congenital adrenal hyperplasia raised as girls will grow to identify as female. However, this means that around one in 20 will not.

Anne Tamar-Mattis

Other conditions involve much more uncertainty. In cases of partial androgen insensitivity syndrome or gonadal dysgenesis, about 25% of patients will be dissatisfied with the gender assignment, whether raised as boys or girls. When a child with a DSD demonstrates a persistent and clear desire to change gender, current standards call for caregivers to support that wish.

Practical support for transition

How do you provide such support? There are currently no guidelines for helping a child with a DSD through gender transition. Certainly there are medical steps to consider, and it is important to locate psychological support for parents and child.

Consultation with specialists experienced with DSD and management of gender change is recommended. If the decision is made to proceed with the transition, there are also practical steps that endocrinologists or primary care physicians, who may be the ones most involved in the child’s routine care, can take to assist with the transition.

A change of gender may involve changing the sex designation and name on the birth certificate, school records, health insurance, medical records and other official records. Families may also have concerns about managing the gender transition at school and maintaining the child’s privacy. Ongoing support from a caring physician familiar with the family’s situation can be invaluable in handling these challenges.

Changing records

The birth certificate is the main form of identification for most children, so changing the sex designation on the birth certificate is important. Most, if not all, states will allow this correction for children born with DSD, along with a name change if needed. Often, the state bureau of vital records will have a fairly straightforward procedure for changing errors on the birth certificate. A doctor’s letter is generally required. It can state that the child’s DSD made it difficult to determine the correct sex at birth and that the original sex designation was incorrect.

Avoid saying that the child is “changing” sex, as this can lead to unnecessary bureaucratic hurdles. It may be wise to avoid mention of the child’s specific physical or genetic features in the initial letter. It is not yet clear how new rules will apply to children with DSD who need to change sex designation on Social Security documents, but it seems likely that a similar letter will suffice. If the family encounters resistance from a government agency, it is time to contact a lawyer. In some cases it may be necessary to get a court order.

Technically, it should not be necessary to have a corrected birth certificate or a court order to change the child’s sex on school records and other administrative documents. However, these can be helpful. A physician’s letter explaining the child’s condition and the medical need to support the child’s declared gender can also be effective. The letter should underscore the importance of protecting the child’s privacy. Again, to protect confidentiality it is best to avoid unnecessarily specific details.

Working with schools

If the child is school-aged, the physician can assist the family in thinking through strategies for working with the school. It is important to consult the child, who may have strong feelings about the trade-offs between privacy and openness.

Some children have been able to openly transition to a new gender within a supportive school environment. I’ve heard stories about schoolmates accepting the change readily, wondering only how adults could get such an obvious thing wrong! Some families will prefer to be more discreet about the transition, perhaps changing schools at the same time.

The child with a DSD may also need special accommodations such as a private place to change clothes for gym. These transitions work best when parents take the time to educate school personnel about the child’s needs and ask them to work as partners. Physicians have an important role to play in helping the family explain the child’s medical condition and any special needs.

Many parents and physicians fear that harassment is inevitable if word of the child’s condition gets out at school. The good news is that schools have made great progress in preventing bullying and accommodating students with special needs. The legal landscape has improved as well: the Americans with Disabilities Act and laws preventing discrimination in schools on the basis of sex and disability provide protection for students with DSD. Increasingly, courts are holding schools responsible if they fail to intervene in ongoing discriminatory harassment. If a school is unwilling to provide reasonable accommodations or protect a child with a DSD from bullying, an attorney may be able to help school officials understand their legal responsibilities.

This is a good time to put families in touch with support groups or other families who have dealt with similar issues. Several such groups are listed on the Accord Alliance website at www.accordalliance.org. Good information about supporting children through gender transition (although aimed at families of transgender children) is available from Gender Spectrum at www.genderspectrum.org. Families who need legal information can contact Advocates for Informed Choice at www.aiclegal.org.

Anne Tamar-Mattis, JD, is Executive Director at Advocates for Informed Choice, Cotati, Calif. She welcomes responses to this article at director@aiclegal.org.

For more information:

• Consortium on the management of disorders of sex differentiation. Clinical guidelines for the management of disorders of sex development in childhood. 2006. www.dsdguidelines.org.
• Dessens AB, Slijper FM, Drop SL. Gender dysphoria and gender change in chromosomal females with congenital adrenal hyperplasia. Arch Sex Behav. 2005;32:389-397.
• Lee PA, Houk C, Ahmed SF, et al. Consensus statement on management of intersex disorders. Arch Dis Child. 2006:91;554-563.