Friendships and relationships

Scroll

arrow
Home > Me and my family > Friendships and relationships

Printprint

Friendships and relationships

Jan 25, 2024

blockendxy

A great social life is very important for all of us. It can give us great pleasure, joy, a sense of belonging, improved self-esteem and can extend our emotional development. As with all adults, there is usually some learning of new skills needed to enable a relationship to develop and mature.

Hi, my name is Kim. I enjoy meeting new people and making friends. Please remember that, whilst I am living with Prader-Willi syndrome (PWS), it is not PWS that defines me. Like you, my personality is broad and at times complex. The syndrome is just a small component of my makeup, which can at times present complex challenges, particularly in relationships!

Introduction

Me and my friends who are living with PWS are generally very curious, outgoing and friendly. However, sometimes we may appear self-centred and not always interested in other people, but we can be supported to learn new social skills.

Some of our families have spent many years assimilating and sometimes perhaps rejecting the particular difficulties of living with PWS. Certain patterns of behaviour within the family may have become the norm, and these are very difficult to change.

Even though many of us are now young adults, there may be a tendency to continue to treat us as children “for our own good”. Many people may not have a particularly mature attitude to life and find it difficult to deal with many situations. But we can continue to develop in these areas just as the rest of you do, albeit sometimes more slowly than others and with more intensive support.

The rest of our family should therefore be prepared to adjust their perceptions of our potential as we become older and mature.

The law certainly recognises the rights of people with learning delays. Our rights under law and the United Nation Convention of the Rights of People with Disabilities (UN CRPD) should be considered and respected.

Family milestones

Brothers and sisters leave home, go to university, get jobs, and perhaps get married. Then us people living with PWS may begin to realise that some of these things may not happen to us. Then we may need a lot of support when these family events happen.

Our value to the family should be highlighted, such as our role as an aunt or uncle to our brother or sister’s children.

Meeting with other like-minded people

Many of us find it helpful to communicate or mix with others with the syndrome. Through such friendships we can realise that there are others who share the same experiences, and it can help us to come to terms with, and have a better understanding of living with the syndrome.

Because of its rarity, it is often difficult to find another person living with PWS near where we live, so many meet up at PWSA-organised conferences, holidays or local meetings. PWSA is also growing an online group known as ‘Our way of Life Australia’ (OWLA) where we can meet safely to discuss things that are important to us. To find out more about the OWLA leadership group, please email social@pws.org.au

Note: PWSA recognises that all people are individuals. We agree that people should not be grouped by their diagnosis, however, we see benefit in connecting individuals that share similar learning and support needs, as is often the case with people living with PWS.

Social relationships

Socialising can be fun and rewarding, but many of my adult friends can find social relationships challenging. Typically, we might focus on one topic to the exclusion of all others. We can find it difficult to answer direct questions or butt into conversations with a topic totally unrelated to the current one. We can be very withdrawn in some situations, especially if we feel under pressure. We may find it difficult to make eye contact, get too close to the person we are talking to, or sometimes even use a rather bossy or even aggressive tone of voice.

Generally, we are very friendly and outgoing and love meeting new people.

Ideas for helping us to develop better social relationships

As well as making relationships, we may need support to maintain them. It may be helpful to identify one type of social behaviour which we find particularly difficult and work with us to change it. You could do this by role play. You behave as we usually behave and ask us how we feel about that. We may then see that it would be helpful to change. Further role play could then concentrate on ways of making the learned behaviour better. You could agree visual cues to warn your son or daughter we are over-stepping the mark, e.g., a hand movement, or you could agree a phrase such as “Please wait until I have finished speaking,” or “Could you speak more quietly please?”

Facebook

Facebook and similar social networking sites can be very helpful for us to interact with people we would not normally meet, as are online interactive games. However, access requires careful monitoring and usually parental support (technical solutions). See the ‘Be safe online animated video from PWSA UK https://vid.cdn-website.com/1b38aac2/videos/ZtIPRW9SRul7OpiGofpn_Be+Safe+Online+Animation-v.mp4

Leisure interests

People living with the syndrome should be encouraged to join in with all types of social and leisure interests, as this broadens our experience of social relationships and helps to keep us busy and stimulated.

Some people may feel comfortable in clubs for people with learning difficulties. Others may feel that they do not “fit in” with the intellectual levels of such clubs, and feel happier being involved in youth clubs, church fellowships, cricket, or other sporting clubs.

Of course, all clubs should be vetted for access to food, and a strategy for dealing with this agreed upon. If necessary, a family member, friend, local volunteer or support worker could be enlisted to keep a supportive eye on us while we participate in the club activity.

There are, of course, many other activities which we enjoy, and which provide physical and mental stimulation. Here are just a few: walking, riding, swimming, dancing, snooker, darts, yoga, photography, gardening, typing, weaving, rug-making, voluntary work for environmental organisations, helping the elderly, helping with play groups, looking after pets, sewing, knitting, listening to music, and of course, jigsaws puzzles.

As we get older, our interests may change – just as other people’s do. Just because we have always enjoyed doing jigsaw puzzles in the past does not necessarily mean that we still enjoy doing them now. Like everyone, our interests will change over time.

Holidays

Who doesn’t like a holiday?! A holiday away from home can provide a real break for both us and you, but it will need careful planning. There are some organisations which can provide a holiday for people with learning disabilities, but careful consideration of each program’s structure and activities is needed.

Sexuality and sexual relationships

Most people living with PWS do not fully sexually develop, and because the chances of having a child are slim, some parents may feel that “the facts of life” are irrelevant to their son or daughter with PWS.

However, people with the syndrome should be aware of how their bodies differ from those of other people, and be able to consider a sexual relationship, and what the implications are, even if it is not for them.

It is important for us to be as well-informed as possible, depending on our intellectual level and capacity to understand what sexual relationships mean.

We may have learned much about sex at school, TAFE, or day program, but we should also understand how our body will develop slightly differently from most other people’s.

It is also important to help us understand the risks in relation to sexual relationships, such as exploitation by others.

Another reason to inform your son or daughter about sex, and in particular about contraceptives, is the risk of sexually transmitted diseases. Then we may be able to recognise if we have a sexual infection, and to know how we can guard against infections by using condoms or abstinence, etc.

People living with PWS are usually aware of their sexual identity as a male or female, and how society reacts to that identity. It may include identifying with the LGBTQI community. We are just the same as everyone else in that we would like a “special person” who loves us, and who we can love in return. Even if the relationship never goes beyond kissing and cuddling, it can still be a very important part of our life for many.

Sexual relationships in PWS

Little is known about the sexual relationships of people with PWS. Many may embark on relationships when they move away from home, particularly when moving into a residential home, where they meet other people living with PWS or other learning disabilities.

Relationships often involve engagements and marriage plans but these can often be short-lived. The connection may cause a great deal of distress to one partner who is not ready for the relationship to end, when the other decides to move on – usually to someone else in the same establishment. However, some relationships are stable and can provide both parties with a very supportive and loving relationship – much depends on the emotional development level of the parties involved.

There is no reliable data about what form these relationships take. Information can be complicated by people living with PWS claiming to have had a sexual relationship with another person when in fact their relationship has not extended beyond kissing and cuddling. Some people may say they are married, having a baby, or having sex with someone when it is manifestly not true.

This carries implications for investigations into sexual abuse. The person’s allegations should be taken very seriously indeed because people with the syndrome are at special risk of being abused or exploited (and such cases have been proved. However, it should also be borne in mind that the person could be fantasizing or confabulating, ignorant of the mechanics of sex, or even manipulating a situation to get their own way about something.

In many ways, the level of sexual development of most people with PWS can be seen at a similar stage to that of a younger person, say 8–12-year-old.

Social life and relationships- Growing up with PWS

PWSA UK has produced some PWS-specific animated videos which explain various aspects of sex and relationships. The topics are:

  • Introduction
  • Growing up and body changes (male/female)
  • Be safe online
  • Menstruation and periods (girls and women)
  • Growing up and feelings
  • Keeping clean and fresh (male/female)
  • Saying “No”
  • Different types of relationships
  • Adult relationships and saying “Yes”

This series of short, educational Growing Up animated videos can be viewed separately, when appropriate to the age, gender and understanding of the person living with PWS. A set of notes for parents and carers accompanies the videos.

Marriage

Legally, someone with a learning disability has the same rights as anyone else to live with someone and get married, provided they are over 16, able to give their consent and understand what marriage is. In Australia, we are aware of at least one woman living with PWS that has been married. There are other marriages overseas – usually to someone with another learning disability. In such situations, the couple usually live together within a supported living situation. We are not aware of a man with PWS getting married. When marriage is realistically contemplated, the couple will need to show that they understand what marriage involves and that they are capable of consenting to it.

Fertility and pregnancy

It is advisable for both men and women engaged in sexual relationships to seek and follow contraceptive advice. Whilst rare, it is possible for a woman with PWS to fall pregnant, and therefore advisable to follow contraceptive advice. There have been several babies born to a woman living with PWS in the UK and other countries. Theoretically, the chances of a fertile woman with PWS having a healthy baby depend on what genetic type of PWS she has. A woman with maternal disomy is likely to have a healthy baby, everything else being equal. A woman with a deletion has a 50% chance of having a baby with Angelman syndrome. A man with maternal disomy theoretically might father a child who is healthy, everything else being equal. A man with a deletion has a 50% chance of fathering a baby with Prader-Willi Syndrome. To our knowledge, it has proved too challenging for the baby to be cared for within the birth family.

Sexuality in older people with PWS

There is very little information about how people living with PWS develop sexually in later years, or whether their ability to make and maintain relationships matures or stays the same. Similarly, we have little knowledge about whether women with PWS go through the menopause. As time goes on, we are seeing an increase in the number of people with PWS living longer, and this will increase our knowledge in the future.

Sexual identity issues

Individuals are usually aware of their sexual identity as a male or female, but anecdotally there have been cases where a man with the syndrome feels that he would be happier as a woman – the lack of sexual development and the pseudo-breasts which are often associated with obesity mean that others may sometimes mistake a man with PWS for a woman. Treatment with male sex hormones may help, but professional involvement should be sought regarding counselling and therapy.

Inappropriate behaviour

Some individuals may use sexual phrases and swear words in their everyday conversations and in letter-writing. This can be very distressing to the person on the receiving end, but usually the person with PWS is unaware of the seriousness of their actions. Specialist behaviour therapy should be sought if this is a persistent problem. The National Disability Insurance Scheme (NDIS) will fund the services of a Behaviour Support Practitioner, Clinical Consultant or Psychologist to assist in developing a positive Behaviour Support Plan. We recommend that you find a practitioner with experience in supporting people living with PWS.

Some people may become very obsessive about another individual. Those who persist in this type of behaviour may need counselling from someone with experience of people with learning disabilities. The Growing Up with PWS video series above also addresses the issue of obsession with another person,

Driving

Some individuals may ask if they can learn to drive. It is not unknown for a few people with PWS to be able to do this – much depends on individual abilities. In Australia we can renew our learner’s licence annually in some states up to 10 times. Getting a full licence is more challenging – we are aware of one person in Europe who drives themselves to work on a regular basis.

Further information

A Victorian website gives an overview for those with cognitive impairments: https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/intellectual-disability-and-sexuality

The ‘Planet Puberty’ website has lots of guides and videos for all genders at: Resource hub – Planet Puberty from Family Planning New South Wales.

Thanks to ……

PWSA UK for sharing the original source material.

 

Get in touch

We welcome enquiries about anything related to PWS. This could be about the changes through the life stage of living with PWS, individual needs, services, getting help or interacting with the NDIS, the Quality and Safeguards Commission or the AAT.

Contact us