In March 2017, Ms. Coleman’s daughter Justice Hope, who was medically complex and had multiple disabilities, died at age 11. She was the sunshine in the lives of many and communicated using a thousand smiles.
The birds and the bees.
Such a simple and safe way to think and talk about sex, contraception, menstruation, and so much more with our children.
I will admit that I was nervous the first time we had this discussion with our oldest child. The birds and bees did help us to remember that this is all part of nature, to relax and be open and honest.
However, as my daughter with intellectual disability neared the age of getting her period, we began to worry. How do we talk to her about “the birds and bees”? I also had a lot of concern (fear, if I am honest) about the history of sterilization of children with disabilities. As a lawyer and advocate, I knew the issues and the law, but when the topic became real in our life, things seemed less clear. So, we started talking with her pediatrician, and then when a different but related issue did arise, we met with a doctor who specializes in gynecology for young girls.
In this month’s Pediatrics, the American Academy of Pediatrics publishes “Examining Permanent Contraception for Children, Adolescents, and Young Adults With Intellectual Developmental Disorder: Ethical, Legal, and Medical Considerations: Clinical Report,” which dives deep into the history, the current state, and recommendations of this topic (10.1542/peds.2024-068955).
The clinical report begins with some key introductions:
- Permanent contraception and sterilization are often used interchangeably to refer to a surgery to alter a person’s ability to reproduce. The authors use “permanent contraception” to refer to procedures that intentionally prevent procreation and “sterilization” when discussing this topic in history and legal cases.
- This report focuses on children, youth, and young adults with intellectual disabilities. The authors use the term “intellectual developmental disorder.”
- The report looks at some aspects of the issue by age. For example, how should you think about contraception for a child or minor as compared to an adult?
- The report talks about the issues for people of any sex or gender.
The report is organized in three main areas:
- Ethical: Authors discuss the history of use and abuse of permanent contraception and current ethical issues.
- Legal: Authors review key cases and laws, including issues of informed consent.
- Medical: Authors talk about how to consider patient preferences in decision-making and offer recommendations for those families thinking about permanent contraception for their child, youth, or young adult.
The authors emphasize doing what is in the best interest of the child, youth, or young adult, as well as the importance of using long-acting reversible and minimally invasive treatments whenever possible.
What do I do with this clinical report?
- If you have been thinking about how to talk to your child with intellectual disability about menstruation, sex, and related issues, read this report. Take your time with it. Scan the report for a specific topic or read the whole thing in parts.
- Share it with your child’s doctor to start talking. Use it to ask questions about something specific or to share concerns and fears.
- If your child, youth, or young adult with intellectual disability has questions, work with them to get the answers.
