The sexuality of people with Down syndrome is often overlooked. It is still common to believe that they are not interested in sex, and therefore it is unnecessary to talk to them about it. Yet people with Down syndrome have sexual and emotional needs and desires, and they often have the urge to be in a relationship.
An appropriate education can enable your child to develop their sexuality in a healthy and satisfying manner. It is also a way to prevent sexual abuse. It is important to provide them with information and guidance to enable them to understand their desires and needs, and to help them adopt socially acceptable, safe and respectful behaviours.
This article aims to introduce you to the sexual education needs of your teenager or young adult, to answer your questions, and to equip you as a parent or educator.
What does the sexuality of people with Down syndrome look like?
People with Down syndrome have sexual experiences and needs similar to those who do not have Down syndrome. In adolescence and adulthood, they may want to have a boyfriend or a girlfriend, to have physical contact with their partner, kiss them, etc. Keep in mind that their needs will vary from one person to another.
If I talk to my child about sexuality, is there a risk that they will develop inappropriate sexual behaviour?
On the contrary, adapted sex education can help your child behave properly in society, and maintain egalitarian and reciprocal relationships. It is essential to teach them to respect laws and social norms, to assert themselves (to learn to say no) and to take into account the consent of others. Sexual education also helps to prevent STBBI (sexually transmitted and blood-borne infections) and unwanted pregnancies, helps them to recognize potential abuse situations, and gives them the tools to seek help if needed.
How do I approach sexuality with my child?
• use simple sentences
• give concrete examples
• use real words to describe genitals and sexual behaviours, not metaphors that might be confusing
• use visual aids, such as pictures or film excerpts, to facilitate understanding
• repeat the information often
• show that you are open to questions and to discussions about sexuality
Depending on your child’s needs, here are some ideas of topics to discuss with him or her:
• personal hygiene (shower, deodorant, shaving, etc.)
• romantic relationships
• sexual practices (making love, kissing on the mouth, masturbation, etc.)
• prevention of STBBI and contraception (condoms, hormonal contraception, etc.)
• sexual consent
• social norms (what is appropriate or inappropriate)
• body image
• sexual orientation
• having children
• cohabitating as a couple
How can I approach the topic naturally?
It can be intimidating to discuss sexuality with your child. However, it is possible to integrate sex education into everyday life.
After watching a show or a movie, talk to your child about the scenes related to sexuality. Ask for their opinion, make connections with their own experiences, and differentiate reality from fiction. Topics to talk about include: falling in love, jealousy, homosexuality, respect, heartbreak and many more.
Spur conversation by asking questions. What did you think of the relationship between the two characters? Do you think that character was right to react like that because he/she was jealous?
If your child is talking about their sexuality or emotions, ask what he/she means by that. Check their understanding of the subject, and correct if necessary.
How does puberty happen in people with Down syndrome?
The sexual development of individuals with Down syndrome is generally the same as the rest of the population, but puberty sometimes starts late.
In women, periods can be irregular and particularly long. If that is the case, a medical follow up may be needed to rule out hormonal disorders.
Puberty can be a frightening or embarrassing time. When uninformed about puberty and sexuality, people with Down syndrome may be more worried about all these changes. It is important to accompany your child on this journey, talk to them about the development of their body and help them understand that everyone goes through this stage.
Here are some practical suggestions:
• Leave illustrated books about puberty and/or the human body in your child’s room or in your home. This will allow them to become familiar with this topic at their own pace.
• Review their personal hygiene routine with them, because the hormonal changes brought on by puberty often lead to more intense body odour. Make your child aware of the importance of regular washing and using deodorant.
• Take the time, with your child, to choose their new personal hygiene products. Depending on their sensory sensitivity, they may need to test several odours or textures before finding what suits them.
• When hair appears, get your child to use a razor and incorporate this habit into their personal hygiene routine. Explain that keeping or shaving body hair is a personal choice.
How can I help my child flourish in her/his intimate relationships and sexuality?
Like everyone else, your child has the right to a private life. It is therefore necessary to think of ways to respect their privacy:
• Does your child prefer that you knock on their bedroom door before entering?
• Are they allowed to invite a close friend into their room?
Check their understanding of what is private and what is public, while allowing them to access a safe place where they can live their intimacy at their own pace. Consider the following ideas:
• offer to organize some romantic time with their girlfriend or boyfriend
• give your child the opportunity to put a “Do Not Disturb” sign on their bedroom door when they feel the need
• if it is not possible for them to have their own room, provide them with room-dividers to give them privacy
• create meeting opportunities with young people of their age: classes, group outings, etc.
Can I teach my child to use a contraceptive and/or condom?
It is important to teach your child that, while having sex can be a fun and meaningful experience, it can also have consequences like pregnancy or an STBBI. If you feel they are receptive, show them that there are ways to avoid these consequences and teach them how to use a condom. Some practical tips:
• use real words and visual aids
• demonstrate with real condoms
• make sure they are able to handle the condom correctly
If your son or daughter is in a relationship, take the time to discuss his/her sexual desires and needs. If necessary, you can make an appointment with a doctor to explore possible contraceptive options.
How can I protect my child from sexual abuse?
It is extremely important to provide information to your child so they can recognize abusive behaviour and seek help if needed.
• work with them to learn how to be assertive in everyday life
• teach them that their body belongs to them and that they have the right to refuse to be touched
• help them understand that they have the right to say “no” if something makes them uncomfortable
• explain what their private parts are and that no one can touch them or look at them without their permission
• explain that you should not touch other people’s private parts without their permission
• help your child identify trusted people they can talk to in case of problems
• explain the importance of public modesty – no stripping naked in public!
What is consent?
Consent is the permission someone gives to another person to do something. For example: accepting a hug, agreeing to kiss, agreeing to a romantic date, etc.
Consent must be given only because you want to, not because you feel compelled, because you are afraid of hurting the other person, or because you do not want the person to get angry at you. Consent is mandatory for anything related to sexual activity.
How can I help my child be comfortable in their friendly, romantic or sexual experiences?
Work with them on social skills. This can be done with role play and social scenarios explaining the steps to follow.
Check their beliefs about the stages of life. Does your child think it is abnormal to still be single at their age? Normalize their experience by explaining that everyone goes at their own pace.
If your child is in a romantic relationship, help them identify the behaviours that interest them (holding hands, kissing, caressing, etc.). Discuss the steps involved in these behaviours and explain the importance of taking your time.
Mind and Body – Answers to Your Questions: a Sex Education Guide for Young Adults and Teens with Trisomy 21, designed by the Canadian Down Syndrome Society (available online at cdss.ca)
ibelong.ca: information and testimonials about friendship, love and sexuality for people with intellectual disabilities
Adapted with permission of Regroupement pour la Trisomie 21