A 14-year-old patient with a lumbar-level myelomeningocele comes in for a routine visit. When being examined in private, she shares concerns about starting high school next year. She is worried that it will be difficult to manage her bowel and bladder incontinence and menstrual cycle independently, make friends and eventually be able to date. She also has heard that she is at risk of having a baby with spina bifida, and this is frightening for her. Later that day, the mother of a patient with autism spectrum disorder and mild intellectual disability expresses concerns that her teenage son has made unwanted advances toward female classmates and doesn’t seem to read cues to help regulate his behaviors. How can you help patients with complex medical and behavioral issues navigate the additional stressors of emerging sexuality?
Pediatricians often are asked to advise on medical concerns in patients with special health care needs and disabilities. As these patients grow older, issues regarding pubertal changes and behavioral issues may emerge. Parents and older patients, however, may be reticent or embarrassed to bring up questions about sexuality. Parents sometimes assume the school will address these issues, but school curricula often do not include topics regarding sexual development, especially in children with disabilities.
This lack of discussion and education may leave a child with disabilities unable to develop independence and vulnerable to abuse and exploitation.
The updated AAP clinical report Promoting Healthy Sexuality for Children and Adolescents with Disabilitieshelps address this knowledge gap, providing pediatricians with guidance and resources to assist patients and families. The report, from the Council on Children with Disabilities, is available at https://doi.org/10.1542/peds.2021-052043 and will be published in the July issue of Pediatrics.
Defining the issue
There have been innumerable medical advances since the original clinical report on sexuality was published in 2006. These include knowledge about the causes of disabilities and their recurrence risks, the benefits of HPV vaccine, the risk of sexual abuse in patients with disabilities and how medical issues can impact puberty. The prevalence of autism spectrum disorder also has increased, and these patients can present behavioral challenges to their caregivers and pediatricians, especially when dealing with emerging sexuality.
The updated clinical report addresses sexual development of children and youths with disabilities and provides tools and resources for clinicians. The report emphasizes strategies to respect patient autonomy; reduce risk of sexual violence, abuse, exploitation and coercion; promote safer sex practices; and foster the development of healthy sexuality regardless of physical, cognitive or socioemotional limitations.
Pediatric health care providers’ relationship with patients and families over time allows them to discuss and promote social and sexual skills at an individualized pace.
Recommendations
Following are key recommendations in the report for pediatric health care providers.
- Understand that all people have the right to develop relationships, exercise choice and autonomy, and receive education to promote a healthy sexuality.
- Discuss appropriate “private” vs. “public” behaviors, even with young children. Explain “good touch/bad touch/necessary touch” and use anatomically correct language for body parts to help children understand their bodies in a positive, healthy way.
- Begin to discuss puberty by the time patients are 8 or 9 years of age, giving information and anticipatory guidance regarding hygiene and normalization of experiences.
- Offer adolescents with disabilities an opportunity to speak confidentially during visits.
- Help youths with disabilities procure contraceptives in a confidential manner and screen for sexually transmitted infections when appropriate.
- Provide families with resources to help address problematic or inappropriate sexual behaviors.
- Consider partnering with schools to ensure children with disabilities have access through their individualized education programs to developmentally appropriate sexual education, including information about sexual victimization, safer sex practices, consent and respect.
- Be aware that children and youths with disabilities are at increased risk for sexual abuse and assault and help families understand this risk.
Drs. Elias, Davisand Houtroware lead authors of the clinical report and members of the Council on Children with Disabilities.
