We are aware this topic may be culturally sensitive, this is a general overview.

What is sex education and why is it important?

Sex education involves a variety of topics including body biology, what sex is, body parts and behaviours which are private, and masturbation. Sex education is not just about teaching safe sex — it is important for young people to understand their bodies and boundaries. All young people will hear about sex or see information about sex so it is important to have a discussion with them to gauge what they understand, answer questions and approach any misconceptions. Avoiding this conversation can put them at risk as they may behave inappropriately in public or be taken advantage of due to their lack of knowledge. It is really important to be proactive.

People with additional needs have the same sexual needs, feelings and desires as any other person. Information should be provided that is suitable for them so they can make informed choices and stay safe. Without good education, people with learning difficulties are prone to being more vulnerable and are more likely to be exploited. Helping them to understand their body, what they want from intimate relationships and learning to say no to unwanted contact is crucial. They also need to understand they need to get consent from any sexual partner.

Sex education should start early. During primary school you can teach your child about healthy relationships, how to communicate their boundaries, and appropriate vs inappropriate contact. In addition, you can talk to them about their body, puberty, periods and wellbeing. Girls with FXS need to understand that menstruation/periods are a natural process, as it is a new and uncomfortable sensation which can cause a range of difficulties. During secondary school you may wish to start conversations about consent, sexual exploitation, online abuse and how they can protect themselves.

Approaching Conversations About Sex

Sex can feel like an awkward and uncomfortable topic to talk about and that is ok. It can be really easy to avoid questions or the subject generally, but if we avoid the chance to educate people properly they are at increased risk of finding information from less reliable sources. This could result in them not understanding what appropriate sexual behaviour is, or increased risk of pregnancy or a sexually transmitted infection. You do not have to answer their questions straight away, it is okay to say you need time to gather information and arrange a time to speak about it. Do not avoid the conversation as this can make it more difficult for them to be comfortable and happy to talk to you when they need help. Avoiding the conversation may give the idea it is not something they can talk about.

The information you give them should be appropriate for the age and needs of the person you are talking to. If they are having menstrual periods or erections it is important to talk about it. Although it is easy to fall into personal experiences, remember the person with FXS may be having feelings or experiences which differ to you. It may help to talk about characters from a TV show or book — this can allow the person to unpack sexual topics without feeling the conversation is too personal.

Sexuality can be a tricky topic to discuss. If it feels too challenging, reach out for help. Talk to teachers, family or search online for support groups. See our list of resources below.

Sexual Identity and Gender

It is important to encourage our loved ones to explore their identity. Your loved one may express a range of sexual orientations, including lesbian, gay, bisexual, transgender, queer and others (LGBTQ+). Being part of a minority sexual orientation or gender identity group puts them at risk of facing discrimination and they may be nervous to disclose this information. Some people may be asexual and not interested in sexual relationships, and this can be just as important as an identity as any other sexuality. It is important to create a safe space for them to talk about their feelings and about any problems they may be facing.

If your loved one is part of the LGBTQ+ community, be supportive. Sex education is often not diverse. Let the information they tell you impact the type of conversations around sex you have. For example, if they are lesbian it is important to cover the range of protection suitable for lesbian relationships rather than just condoms. It is important for LGBTQ+ people to meet other people in the community, allowing them a sense of connection and understanding. It may be useful to see if there are any LGBTQ+ groups for people with learning difficulties near you. Additionally, you could share books and videos with LGBTQ+ characters in them.

Language Around Sex

Young people picking up sexualised language and repeating it can be a challenge. They are especially likely to repeat it if it gets a reaction from others. To approach this try not to react strongly to what they say, and try to use social stories to remind them that it is not appropriate to say these phrases/words to others. You may find it helpful to offer alternative things for them to say.

On the flip side, it is important not to shy away from appropriate sexual language when it is needed, for example telling them the correct language for body parts. Using slang or avoiding using accurate language can lead to confusion and encourage the idea that sex or their body are not something to talk about.

When talking to your loved one about sex:

  • Use accessible words (not slang or jargon)
  • Use anatomically correct language
  • Speak slowly and clearly
  • Break information down
  • Keep checking their understanding
  • Give examples

Sexual Feelings and Behaviours

Feelings

Relationships are one of the wonders of life that make it fulfilling. This is the same for people with FXS and other learning difficulties as it is for all people. Under the Human Rights Act every person has a right to personal relationships and consenting sexual relationships in private. There is often a belief that neurodivergent people have different feelings and emotions than the rest of the population, and this can be restricting. Attitudes like this impact the support neurodivergent people receive. As discussed in the section above on approaching conversations about sex it is really important to encourage discussions about sex. By avoiding the topic, your loved one is at increased risk of being taken advantage of, acting inappropriately or not experiencing the joy of good sexual relationships.

Signs your loved one may be in an exploitative or unhealthy relationship include being persuaded to be intimate in exchange for something, not having personal space respected, being blamed for their emotions or having to restrict/change other aspects of themselves or their life for their partner.

All people will have sexual feelings at some point during their development. When this seems to be the case, it is beneficial to discuss with them what these are, how they should act on them and social/legal rules around sex. Conversations about sexuality are not only about sex but include their body/development, relationships and sex culture (such as responding to innuendos or conversations about sex). Sexuality is part of many aspects in society and avoiding it can lead to them being unprepared.

Behaviours

There are many behaviours that can cause issues when it comes to sexuality, some of which are covered in this section. Please also see our sections on ‘Správanie‘ and ‘Managing Challenging Behaviour‘.

Staring

Some individuals find themselves staring at others unintentionally. This is usually being interested in what is going on around them. However, staring is not always appropriate. Explain to them that when people are engaging in some behaviours (like kissing), that it is not appropriate to stare at them as they may want privacy. Encourage them to ask questions about what they have seen, but in an appropriate setting such as at home. You may want to go through different situations and talk to them about which may be okay to stare at (for example when characters in a movie are kissing) versus when it is not appropriate. Additionally, if you catch them staring, try subtly letting them know it is not appropriate. You may even wish to develop a signal so that you can stop inappropriate staring more discreetly in public.

Touching Others

Everyone has the right to consensual sexual relationships in private. It is important to talk to your loved one about how sex works, consent and appropriate public behaviours. In relationships, what is appropriate behaviour will vary from culture to culture and depends on the environment — for example in the UK it would be inappropriate to start kissing someone in the library but would be more acceptable in a park. Additionally, views will vary from person to person, so it is important to explain to your loved one that what might be seen as okay by one person might not seem okay to another person. Crucially, it is important that the person they are engaging in a relationship with is comfortable (for example, some may not like holding hands around their family) and so it is important for them to discuss with their partner what their boundaries are. As a general rule, relational activities should be based on mutual consent, respect and good communication.

There may be some with FXS who misunderstand that touching other people’s body parts, for example someone in the playground at school, is not appropriate. They may be curious, exploring the world around them through touch. Teaching appropriate behaviour, and addressing curiosity when behaviours first present, is important. We are all naturally curious and we all explore the world around us. Punishment is not the answer — instead have conversations about bodies, appropriate behaviour, and educate the person with FXS about their body, as explained in the section above.

Self-stimulation and Masturbation

Another topic that can arise is self-stimulation, especially when a young person is developing, and more commonly in boys/men. It is important to be aware siblings may be subject to inappropriate touching or play. Self-stimulation is completely normal but not always appropriate (for example, in public). Try to reinforce the idea of a private place and explain why it is inappropriate to self-stimulate in public/a particular setting. Do not punish them or make them feel as though what they are doing is wrong, as they have the same rights to a sex life as everyone else.

If your loved one spends a lot of time masturbating it may be a signal that they are under stimulated in other ways. Think about trying to engage them when they seem bored or uninterested and encourage them to do more meaningful activities in their spare time. Our sections on ‘Sensory Processing‘ and ‘Sensory Diets‘ may help with this.

Most people masturbate and so it should not be surprising that an individual with FXS may too. However, many people with learning difficulties face some struggles in masturbation, including biological causes (for example, those with Down’s Syndrome may find it difficult to get erections), medication difficulties (often antiepileptic drugs can cause issues with erection and ejaculation) or physical difficulties (finding it difficult to remove their clothes). Research suggests men with learning difficulties feel more guilty about masturbation and do not think other men do it. To help this, it may be beneficial for a man they know to talk to them about it and say they masturbate, too. Please see the resources list below for books that may help a conversation on masturbation.

Sexual consent is an agreement between people to do something sexual that both understand and are happy with. Consent has to be given by choice, and the person giving consent has freedom and capacity to make the choice — meaning there should be no pressure. The law in the UK, and many other countries, says you can withdraw your consent at any time and both people need to consent each time they engage in a sexual act.

A person can not consent if they are asleep or if they are intoxicated. Additionally, they can not give consent if they do not know what sex is or do not know what they are agreeing to. In the UK anyone under 16 years old can not give consent for sexual activity, this age may vary in your country. Many people with additional needs have the capacity to make their own decisions around sex. For more information about consent, see our page on autonomy and consent.

There are also rules about online activity. Cyberflashing (texting sexual images to someone without their consent), sharing/threatening to share sexual images of someone else, or taking sexual photos of someone without consent are all considered sexual abuse in the UK. It is important to make sure your loved one knows about online behaviour and understands why certain activities are wrong.

People with learning difficulties are more likely to experience sexual violence. They then may be scared to speak about it in case they are not believed or because they can not find the right words. Therefore, it is important to offer them multiple ways to talk about sex, including pictures/aids or writing about their feelings. If they seem nervous to talk about sexual experiences, you can try to talk to them alone in a safe space or find support from a charity or support service in your country. Be patient with your loved one, listen and create time and space for them to talk. Believe them and support them in whatever choices they make about next steps. Reporting sexual violence to authorities is the same as with any victim, it can be traumatising and scary, and some choose not to report. However, if it is possible to report abuse in order to protect the person with FXS and others, this is a courageous decision and full support should be put in place.

Your loved one may not always say if they have been a victim of sexual violence. Signs they may have experienced abuse include:

  • Being quieter than usual
  • New and/or unusual fears about being touched, being alone, being in a particular place or with a particular person
  • Changes in eating or sleeping
  • Difficulty concentrating or seeming distracted
  • Regression in behaviours
  • Self-harm
  • Asking vague questions about sex, secrets or unusual games
  • Frequent or persistent urinary tract infections
  • Difficulties with continence

Although these signs may indicate a need for a conversation, they do not confirm sexual abuse has occured. More information is available on signs of sexual abuse.

Contraception and Safe Sex

Contraception and safe sex are very important topics. There is often a lack of information about contraception and safe sex, so it is important to check your loved ones’ understanding of the topic. Lack of knowledge and resources results in an increased risk of unwanted pregnancies, sexually transmitted infections and less comfortable sex. Ultimately, it is the individual’s decision on what they decide to do, but part of your role is to help inform them and support them how they wish.

Discuss with your loved one who they would be most comfortable talking to. Options include family members, doctors or a sexual health clinic (keep in mind they may have a gender preference for the person they speak with). If the person with FXS is comfortable with the option of going to a sexual health clinic, this may be the best option as these clinics will have the most time, resources and up-to-date information.

There are different reasons someone may wish to use contraceptives. Explore this with the person with FXS. They may want to prevent pregnancy, decrease risk of sexually transmitted infections, and, for women, control their menstrual cycle. However, there is also the risk the person with FXS may be being abused or coerced into sexual relationship, and encouraged to use contraception to cover it up.

There are lots of options when it comes to contraception and safe sex tools. Below is an overview of common ones. Please do further research before approaching a conversation with a loved one. Additional resources are available.

Condoms: male condoms are put over the penis, female condoms go inside and line the vagina.

  • Pros: protect from sexually transmitted infections, easily available, inexpensive
  • Cons: condoms can break or slip, require constant use, can be less effective in preventing pregnancy

Contraceptive pills: either combined or progesterone only, pill taken once daily (often with a week break each month).

  • Pros: regulates periods, can reduce acne, effective when taken consistently
  • Cons: needs to be taken daily, increased risk of blood clots, risk of side effects such as nausea or mood change
  • Note: there are a range of pills, each will have different pros and cons

The patch: like a plaster, changed every three weeks

  • Pros: easy to use and highly effective
  • Cons: can cause skin irritation, increases risk of blood clots

The implant: around four centimetres and goes under the skin in the arm

  • Pros: lasts 3-5 years, highly effective in preventing pregnancy
  • Cons: irregular bleeding, procedure required for insertion and removal

Depot injection: protects against pregnancy for up to 13 weeks

  • Pros: effective for a while, may reduce bleeding and cramps
  • Cons: risk of delayed return to fertility, risk of bone density loss

The coil (or IUD): goes inside the womb, can stay in place for 5-10 years

  • Pros: very effective, lasts longer than other methods, reduced menstrual bleeding (for plastic hormonal coil, but increased for copper coil which is non hormonal)
  • Cons: insertion can be uncomfortable, irregular bleeding initially

Emergency/morning after pill

  • Pros: emergency option, easy to take
  • Cons: can cause a headache or stomach pain, may make the next period earlier or more painful than usual

Dental dam: sheet of latex used to reduce risk of sexually transmitted infections during oral sex

  • Pros: reduce risk of infections, works for oral sex
  • Cons: does not prevent sharing of infections through skin to skin contact e.g. herpes or HPV, one-time use

Contraception can be obtained from pharmacies, sexual health clinics or a doctor.

Zdroje

When writing this section we found the Choice Support website particularly helpful.

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