Pediatricians are being encouraged to take a more active role in helping families prepare for and adapt to the changes that come with puberty for girls with disabilities.

In a clinical report that will be published in the July issue of the journal Pediatrics, the American Academy of Pediatrics says that doctors should be ready to address the unique needs of adolescents with physical and intellectual disabilities surrounding puberty and menstruation.

“Even before the onset of menses, the pediatrician could be asked to assist with anticipatory guidance and options for the menstrual cycle because of parental fear of menstrual periods or hormonal mood changes as well as the complex issues of sexuality, vulnerability and fertility in the context of the disability,” according to the guidance crafted by the pediatrics group’s committee on adolescence together with the North American Society for Pediatric and Adolescent Gynecology.

The issues surrounding puberty for girls with disabilities are complex, the report acknowledges, transcending health as well as practical, legal and moral considerations.

The presence of some developmental disabilities may affect the timing of sexual development while medications and self-care abilities can complicate the experience for girls and their families, the guidance indicates.

Pediatricians are urged to be prepared to discuss menstrual management options like birth control as well as surgical options like hysterectomy.

However, the pediatrics group warns that all of these considerations should be weighed in the context of legal and ethical obligations, particularly in cases where patients have intellectual disabilities and may not be able to give consent. And, the guidance recommends that physicians investigate further if families are pushing for some form of menstrual suppression solely due to concerns about being able to provide care or worries about abuse or pregnancy.

In addition to working with girls and their families, doctors are advised to step in if adolescents with disabilities need help obtaining hygiene assistance at school.

“The pediatrician plays a pivotal role during the sometimes difficult pubertal transition for patients with physical and intellectual disabilities,” according to the report.

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