Relationships + Sexuality

It is commonly thought that sexuality is not a concern for people with Down syndrome. People with Down syndrome and other developmental disabilities are often assumed to be uninterested in sex and sexuality, to not be having sex or physical intimacy, and that their interests should match their cognitive age or abilities, not their biological age. They may be seen as asexual, eternally young, or too innocent to be concerned with sexuality or to need sexual health education. However, that is a myth.

Sexuality is not just about sex. It is about who we are and every way we define ourselves. It is our gender, how we identify, and how we express it. It is our appearance, body image, confidence, attitudes, and behaviours. It is attraction, sexual orientation, reproduction, sensuality, intimacy, pleasure, decision making, and setting boundaries. It is our relationships with others, including our families, friends, romantic partners, paid helpers, people in our community and strangers and especially our relationship with ourselves. Sexuality can be ingrained in our self-care and important to our safety. Sexuality is our values and our experiences and how they have been influenced by our culture, families, and faith.

Sexuality is very important and interesting to people with Down syndrome. Comprehensive sexual health education, which encompasses these topics plus the thoughts and feelings that accompany them, is important for everybody

The topic of sexuality can be difficult to discuss with your loved one with Down syndrome, as it can feel awkward or taboo depending on your own education with the subject. Here are some tips on how to talk about sexuality: 

  • Start early. Use the anatomically correct names for body parts, start talking about public and private spaces in your home, and model asking for and giving consent around touch right from the beginning. 
  • Do a little bit, often. There is no single “the talk.” There are thousands of small, short talks that you can have and will continue to have. Keep the talks simple. 
  • Look for the teachable moments.
  • Use visuals. People with Down syndrome are visual learners so picture books, cards, and games will help facilitate the conversation. See some of our favourites listed under resources.
  • Create a “puberty kit” filled with things they will need throughout that time of life that they can touch and experiment with until they are ready. A puberty kit may include period products, shaving products like creams and razors, deodorant, soap, acne treatment, different bras, and some social stories. 
  • These talks are self-esteem boosting and will help our loved ones with Down syndrome understand their bodies and themselves. It will help them understand more of their strengths and stretches as their bodies and their sense of self evolve and change throughout their life. Even if you feel awkward, these are good things to talk about! Help is out there if you need it.
  • Encourage questions by being approachable and askable. It’s okay to admit if you do not know something or are uncomfortable with certain topics. 
  • Don’t worry about teaching too much or too soon. They will only focus on what they are ready for.
  • As with most things we teach, repetition is the key to success. 

DSRF Resources

The LowDOWN Podcast: Down Syndrome and Sexuality

The LowDOWN Podcast: Down Syndrome and Sexuality – Your Questions Answered

T21 Podcast: Andrea Lee on Sexual Health

Q&A with Andrea Lee on Puberty, Relationships and Sexuality

Other Resources

Terri Couwenhoven books

CDSS Mind and Body: Answers to Your Questions

Becoming a Woman: Teaching Healthy Sexuality to my Daughter by Terri Couwenhoven

People with Down Syndrome Need Healthy Sex Lives, Too

Real Talk

Worth the Conversation: Down Syndrome and Child Sexual Abuse Prevention

Healthy Bodies Toolkits: Guides for Puberty for Boys and Girls with Disabilities

Why Sex Education for Disabled People is So Important

Supporting LGBTQ+ People with Intellectual and Developmental Disabilities

Supporting LGBTQ+ Individuals with I/DD Cheat Sheet

Issues of sexuality in Down syndrome

Sexuality, Gender Identity and Intimacy Workshop for Parents from Holland Bloorview Kids Rehabilitation Hospital

NDSS Sexuality and Down Syndrome

Primary Care for Women with Intellectual Disabilities