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The Importance of Developmentally Appropriate Discussions with Young Adults with Trisomy 21

February 22, 2024

Editor’s Note: The February issue of Pediatrics in Review includes an In Brief article on Trisomy 21. The author, Dr Elaine Pereira, expertly outlines important aspects of care for infants, children, and adolescents with this condition, commonly known as “Down Syndrome.” Shortly after publication, Dr. Alison Craig, a general pediatrician in Wisconsin, submitted a wish for one more sentence in Dr. Pereira’s article. The editors of Pediatrics in Review agree with Dr. Craig and wished to share her comment in this blog. She graciously agreed. – Joseph A. Zenel, Editor in Chief, Pediatrics in Review

I am writing today after reading the recent In Brief article by Dr. Elaine Maria Pereira on Trisomy 21 (10.1542/pir.2022-005887). She accomplished a lot in this short piece. The review article reinforced many of the standard ways I approach the care of my patients with T21, which is always gratifying as a reader.

In a brief review article, I understand that not all topics can be covered. However, I wanted to offer an opportunity for future inclusion of a topic that is both important and often under-discussed: the importance of developmentally appropriate discussions with young adults with Trisomy 21 about sexual health, including puberty, contraception, safe intimate relationships, and consent. 

I highlight this because I have found in my practice that for adolescents with intellectual disability, human growth and development and sexual health topics are frequently lost or completely absent in the young person’s adapted educational curriculum. Families also struggle to know how to approach these topics with their adolescents, including those with and without disability. As such, I think that primary care pediatricians play a key role in connecting adolescents and young adults with the empowering education that will support a lifetime of safe and healthy choices. 

As we embrace the holistic and vibrant potential of young adults with Trisomy 21, we need to include the potential that their future lives will include intimate and (I hope) positive, relationships. 

I routinely recommend to caregivers that individual education plans (IEPs) should include adapted human growth and development topics. This is easy to overlook as children move into adolescence at their own pace. Like any form of anticipatory guidance, all that is needed from the pediatrician is support for the caregivers who are advocating for their child’s individualized, developmentally appropriate, and comprehensive health education plan.

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