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A guideline update from the American Academy of Pediatrics offers help to clinicians in guiding children and teenagers with disabilities through sexual development.
Navigating developmental milestones can be difficult in children of all ages and abilities. In children with disabilities, this can become even more challenging depending on their physical, cognitive, or social capabilities—especially when it comes to sexual development.
A recent clinical report on healthy sexual development in children with disabilities aims to serve as a blueprint for pediatricians to help their patients and caregivers through the process. The new report1 is an update to a guideline the American Academy of Pediatrics’ Council on Children with Disabilities released in 2006 on promoting healthy sexuality in children with disabilities. The updated report focuses on guidance for appropriate education, monitoring for a lack of coercion or violence in any sexual activity, and whether the child has reached the appropriate developmental level to navigate feelings and choices about sexual health. Pediatricians can be a resource for children and other teenagers to help them prepare for changes that are about to come, but preparation for patients and their families is usually lacking in this area.
“Children and teenagers with disabilities, just like all children and teenagers benefit from guidance from pediatricians on how to develop a healthy sexuality. We know that children and teenagers with disabilities are not receiving the sexual education they need, so pediatricians have a great opportunity to help bridge the knowledge gap for children and teenagers with disabilities and their families,” says Amy J. Houtrow, MD, PhD, MPH, lead author of the clinical report. Houtrow is a physical medicine and rehabilitation physician at the University of Pittsburgh Medical Center in Pennsylvania.
The updated report addresses a number of advances in the understanding of children with disabilities that have occurred over the last decade. This new knowledge is a combination increased understanding of disabilities like autism spectrum disorder, as well as the fact that many people with disabilities are living longer lives. At the same time as understanding of sexual health in children with disabilities is increasing, the report notes, formal education in school is decreasing and being replaced by media influences.
The primary focus of the report is to arm pediatricians with evidence-based guidance for promoting health sexual activity and development regardless of physical, cognitive, or social limitations. More than 10 million children in the United States have some sort of development disability and navigating their sexual health and development can be a challenge for the parents, pediatricians, and most of all the children themselves.
“As is true for everyone, it is important that individuals with disabilities be provided experiences to acquire developmentally appropriate, relevant, and accurate sexual health knowledge to become competent,” the report authors suggest. “Youth with disabilities need regular opportunities to develop and use skills for negotiating sexual desire, intimacy, and activity that supports healthy sexuality while limiting negative outcomes of sexual activity—such as sexually transmitted infections [STIs], unintended pregnancy or sexual coercion, violence, abuse, or exploitation) regardless of their intellectual capacity.”
Houtrow says the guide utilizes a strength-based approach that emphasizes self-determination and assets to help pediatricians better frame dialogues with children and their families about sexual health.
“Often times we fall back on providing too little information because we underestimate someone’s ability to understand or their interest to learn or their emerging desires, thoughts and feelings,” Houtrow says. “We also know that not discussing risks doesn’t mean that the risks aren’t there. Pediatricians should be playing the long game, so to speak. They can start dialogues about developing a healthy sexuality in early childhood.”
Discussing healthy sexual development “early and often” is a wise approach, she says, and helps set the stage for anticipatory guidance provided over time.
“The tools we have available to us for educating about sexuality are geared toward certain ages or developmental stages. We can adapt these tools for children and teenagers with disabilities, as well,” she explains. “For the pediatrician who is unsure of the cognitive capabilities of one of their patients, the child’s school and parents can often fill in the gaps.”
Houtrow gives the example of children who are non-verbal but have good receptive skills. They may understand language much better than they are able to express. Pediatricians should always be mindful when providing education to children with disabilities to ask how the child best learns and understands so they can tailor dialogue and guidance accordingly.
Another challenge in offering this guidance is trying to decide if parents should be involved. Hourtrow says the answer to this question depends on the child and the parent/pediatrician/patient relationship.
“If the pediatrician is repeatedly engaging in discussions throughout childhood, those early discussions should be with a parent present. Some children will want a private discussion, which should be offered,” Houtrow explains. “As recommended in Bright Futures, private discussions without the parent or guardian present in the teen years can be provided to most children with disabilities. Discussions with the family present should still occur, but the character and content of those discussions can differ. Having private discussions with teens with disability can help develop their autonomy and sense of self. There are circumstances where private discussions don’t make sense, but those are likely more rare than we think.”
Other topics covered in the guide include how and when to start discussion—usually around 8 or 9 years of age—and how to provide screening for STIs and advice on contraception, the report notes. Assessing for sexual abuse, assault, and coercion is also important, and pediatricians need to help parents and caregivers understand the increased risk children with disabilities have in this regard.
Houtrow says she hopes the guide will help pediatricians more effectively—and more comfortably—address these challenging issues in a very vulnerable population.
“I hope that more children and teenagers with disabilities receive helpful guidance about developing a healthy sexuality to help them flourish. I hope that pediatricians can help destigmatize sexuality and disability—many people erroneously assume that people with disabilities are non-sexual beings,” Houtrow says. “The pediatrician can be a great ally for all children and youth including those with disabilities. This is especially important for LGBTQ+ children and teenagers with disabilities.”
Houtrow adds that she is optimistic that these advances may also result in better outcomes in terms of sexual abuse prevalence, pregnancy rates, and STIs among children with disabilities.
“I hope that adults with disabilities report that the guidance from their pediatricians helped them develop their sexual autonomy, I hope that children and teenagers with disabilities have the supports they need to foster a healthy sexuality for themselves,” she says.
1. Houtrow A, Elias E, Davis B, COUNCIL ON CHILDREN WITH DISABILITIES. Promoting healthy sexuality for children and adolescents with disabilities. Pediatrics. 2021;148(1):e2021052043. doi:10.1542/peds.2021-052043