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The Difficulties of Simultaneously Advocating for and Protecting Adolescents with Intellectual Disability Who are Sexually Active

October 28, 2021

Adolescence is a period of growth and exploration.

For the adults who interact with adolescents on a regular basis – including parents, pediatricians and other medical professionals, teachers, coaches, and others – it often feels like we are in a push/pull relationship with the teenager. We are pushing them to be autonomous beings, and yet want to pull them back to protect them and keep them safe. I feel that this is particularly true when the adolescent is exploring their sexuality, which can include sexual relationships with others.

This week in Pediatrics, we are early releasing an Ethics Rounds article (10.1542/peds.2021-050220) that deals with this tension, and it is perhaps complicated by the fact that the patient has intellectual disability.

In each of our Ethics Rounds articles, there is a back-and-forth discussion between clinicians and medical ethicists about how best to deal with an ethical dilemma. This week, in the article aptly entitled “Sexuality Among Adolescents with Intellectual Disability: Balancing Autonomy and Protection,” Drs. Sharon Enujioke and her colleagues at Indiana University and Indiana Disability Rights thoughtfully consider the myriad issues in a case of an 18-year-old adolescent with moderate intellectual disability who has, unbeknownst to her parents, entered into a sexual relationship with her 17-year-old boyfriend.

What questions come to mind when you read the one-liner summary of the case? Here were some of mine:

  • Is this truly a consensual relationship?
  • Does the patient understand the need for birth control and protection against sexually transmitted diseases – and does she comprehend the implications when birth control is used inconsistently?
  • Should the patient’s parents be told, even if she does not want them to know?

These issues, and others, are discussed by experts in adolescent medicine, disability law, and bioethics. Importantly, the experts also share perspectives from two young adults with moderate and mild intellectual disability.

In this case, as in many other cases, there is no one right answer. However, you will find reading these different perspectives helpful – and as a result think about your own perspective as to how you might handle this type of case if and when you encounter it in your own practice.

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