The Pediatric Health Care Provider’s Role
Pediatric health care providers play a crucial and longitudinal role in the development of healthy sexuality of children and youth with disabilities. The unique relationship with the patient and family over time allows the pediatric health care provider to discuss and promote important social and sexual skills at an individualized pace appropriate for each patient.
Pediatric health care providers can examine and adjust or reinforce their knowledge, beliefs, and attitudes about sexuality and gender identity to ensure their own behavior reflects inclusivity and autonomy of all their patients, especially children and adolescents with disabilities; all people have the right to develop relationships, exercise choice and autonomy, and receive education to promote a healthy sexuality, regardless of sexual orientation or gender identity. Communication that is open and respectful can help develop trust and foster shared decision-making.
At the earliest ages, including preschoolers, pediatric health care providers are encouraged to discuss appropriate “private” versus “public” behaviors. Pediatric health care providers can help children with disabilities and their families understand boundaries and the concept of body ownership and consent. Explaining “good touch,” “bad touch,” and “necessary touch” can help children frame their understanding of appropriate and inappropriate circumstances and situations. Using anatomically correct language for body parts at young ages helps children to understand their bodies in a positive, healthy way and offers children a way to express healthy sexuality.
By at least 8 or 9 years of age, pediatric health care providers should begin to discuss puberty and may need to do so sooner if the child is at risk for precocious puberty. Discussing puberty, preparing children and families, and offering additional materials (separate from school curriculum; Table 1
) to review in a quiet comfortable place such as the home allows for questions, clarification, and anticipatory guidance for supports in hygiene and normalization of experiences.
As with all adolescents, pediatric health care providers are encouraged to offer youth with disabilities an opportunity to speak with their provider confidentially during a visit. This allows youth to express their thoughts and experiences and ask questions. This is especially important for youth who are discovering their nonbinary gender identity or nonheterosexual sexual orientation. The pediatric health care provider’s office should be a safe place to discuss these issues for all youth, including those with disabilities.
Pediatric health care providers have opportunities with families and caregivers to introduce topics such as healthy sexual development and exploration while limiting risk of harm. Encouraging coeducational supervised group activities to include individuals with disabilities in typical teenager interactions often is best received by families and caregivers as anticipatory guidance by their trusted provider. This is also a good time to encourage families and caregivers to be a primary source of sexual education for their children. There are many resources available, including those listed in Table 1.
Pediatric health care providers can partner with families and caregivers who may feel uncomfortable addressing sexual health through a shared decision-making process that is culturally responsive and elevates the rights of children with disabilities to gain knowledge and understanding regarding their developing sexuality.
Pediatric health care providers are the best resource to counsel all youth, including youth with disabilities, regarding the prevention of STIs and unwanted pregnancy as well as the benefits of HPV vaccination.
Pediatric health care providers can help youth with disabilities procure contraceptives in a confidential manner, with adherence to informed consent rules.
Pediatric health care providers can screen for STIs or ensure that appropriate referrals are in place (eg, gynecology or urology) for routine screening as part of their role in providing care in a medical home.
Pediatric health care providers are well suited to provide families with resources to help them address problematic or inappropriate sexual behaviors (Table 5
Pediatric health care providers can partner with schools to ensure that children with disabilities have access to a developmentally appropriate sexual education that includes knowledge building around sexual victimization, safer sex practices, consent, and respect through their Individualized Education Programs or as part of the typical curriculum.
Pediatric health care providers may need to offer education to schools regarding the high risk of sexual victimization for children with disabilities, how best to prevent it, and how to identify it if it occurs.
Pediatric health care providers are vigilant about the knowledge that children and youth with disabilities are at an increased risk for sexual abuse and assault and can help families understand this risk. Asking about unwanted or coercive interactions and monitoring for emotional disturbance that may indicate sexual abuse or coercion can happen at every visit. If concerns arise, ensuring that proper reporting occurs and follow-up care is delivered is a role pediatric health care providers are trained to provide.
Pediatric health care providers are encouraged to approach sexual education and guidance individually for children and youth with disabilities, taking into account their patient’s developmental trajectory and understanding the functional limitations of health conditions that can affect the development of healthy sexuality. Numerous other AAP reports can help inform the pediatric health provider on the topic of sexuality (Table 4
). Framing healthy sexuality through a “competence lens” helps providers recognize the strengths and challenges for each individual patient. To be competent at something, an individual must have sufficient knowledge and skills to engage in action. Although there may be barriers to the development of skills needed for healthy sexuality in individuals with disabilities, it is important to prioritize ongoing skill development, compensatory strategies, and opportunities for autonomy and self-actualization.
Amy Joy Houtrow, MD, PhD, MPH, FAAP Ellen Roy Elias, MD, FAAP, FACMG Beth Ellen Davis, MD, MPH, FAAP
Council on Children With Disabilities Executive Committee, 2020–2021
Dennis Z. Kuo, MD, MHS, FAAP, Chairperson Rishi Agrawal, MD, MPH, FAAP Lynn F. Davidson, MD, FAAP Kathryn A. Ellerbeck, MD, FAAP Jessica E.A. Foster, MD, MPH, FAAP Ellen Fremion, MD, FAAP, FACP Mary O’Connor Leppert, MD, FAAP Barbara S. Saunders, DO, FAAP Christopher Stille, MD, MPH, FAAP Jilda Vargus-Adams, MD, MSc, FAAP Larry Yin, MD, MSPH, FAAP
Past Council on Children With Disabilities Executive Committee Members
Kenneth Norwood, Jr, MD, FAAP, Immediate Past Chairperson
Cara Coleman, JD, MPH – Family Voices Marie Y. Mann, MD, MPH, FAAP – Maternal and Child Health Bureau Edwin Simpser, MD, FAAP – Section on Home Care Jennifer Poon, MD, FAAP – Section on Developmental and Behavioral Pediatrics Marshalyn Yeargin-Allsopp, MD, FAAP – Centers for Disease Control and Prevention
Dr Houtrow reviewed the literature, drafted the manuscript, and critically edited the content; Drs Elias and Davis reviewed the literature, added content to the manuscript, and critically edited the content; and all authors approved the final manuscript as submitted.
This document is copyrighted and is property of the American Academy of Pediatrics and its Board of Directors. All authors have filed conflict of interest statements with the American Academy of Pediatrics. Any conflicts have been resolved through a process approved by the Board of Directors. The American Academy of Pediatrics has neither solicited nor accepted any commercial involvement in the development of the content of this publication.
Clinical reports from the American Academy of Pediatrics benefit from expertise and resources of liaisons and internal (AAP) and external reviewers. However, clinical reports from the American Academy of Pediatrics may not reflect the views of the liaisons or the organizations or government agencies that they represent.
The guidance in this report does not indicate an exclusive course of treatment or serve as a standard of medical care. Variations, taking into account individual circumstances, may be appropriate.
All clinical reports from the American Academy of Pediatrics automatically expire 5 years after publication unless reaffirmed, revised, or retired at or before that time.
FUNDING: No external funding.
AAP: American Academy of Pediatrics
ASD: autism spectrum disorder
HPV: human papillomavirus
STI: sexually transmitted infection
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.