Youths with disabilities need education, guidance

on sexual health: AAP

June 28, 2021
Ellen R. Elias, M.D., FACMG, FAAP; Beth Ellen Davis, M.D., M.P.H., FAAP; Amy Houtrow,
M.D., Ph.D., M.P.H., FAAP
Article type: AAP Clinical Report
Topics: Adolescent Health/Medicine , Disabilities , Sexually Transmitted Infections , Teen Pregnancy

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.

Resource
 A table in the report includes links to resources on sexuality education and on specific
conditions

Copyright © 2021 American Academy of Pediatrics