Sexual Health

1. Introduction

Picture: Sculpture by G. Vigeland

Some reflection questions before you begin to work with this module are: 

• Why is sexual health an important topic to learn for your child/sibling/client?
• Why is it important that you learn something about it?
• How do you think knowledge about sexuality can protect your child/sibling/client from sexual abuse or even from crossing their own self-defined limits for sexual behaviour?
• Do you feel prepared to discuss with your child/sibling/client about their sexual health? - What do you find the most difficult in this?

In this module you will learn more about:

• Sexual education
• Sexual standards
• PLISSIT - model
• Cooperation
• Socialising
• Script
• Emotions
• Body parts
• Sexual abuse

2. Individual freedom, legal security and self-determination

This first chapter in the sexual health module provides you with information about definitions and a model that explains the understanding of sexual health. Further chapters highlight the importance of knowledge about ourselves and our body, as well as the importance of sexual education for children, young people and adults that lack opportunities others may have in order to take care of their own sexual development. The chapter ends with some suggestions about resources where you may finds ideas on sexual education. 

Headlines in this chapter are: 

• Sexual health

• Knowledge about yourselves

• Knowledge about your body

• Sexuality education

Before you start, please look at an introductory video from a specialist in Sexology (The Nordic Association for Clinical Sexology (NACS), Wenche Fjeld.

2.1. Sexual Health

Photo: G.H.Lunde

Sexology was a topic in Mrs. Willard's book Sexology as the Philosophy of Life (1) published as early as in 1867. Today, sexology is a large and extensive field of study that covers many themes. Sexuality does not only mean needs based on biological factors. Sexology as a field investigates subjects such as the meaning of sexuality, its role in individuals’ lives, the relationship between sexuality and human rights, including the state’s responsibility with respect to, protecting and fulfilment of sexual rights.

One way to understand what sexual health means is to look at the model of sexual health (2), which consists following components:

A basic component, 

A physiological component

A cognitive component

A relative component

A personal component 

Each component is important when you talk with your child/sibling/client about sexual health. Every component affects our sexuality, and can be therapeutically affected (2). 

Fig 1: Sexual Health model (2). 

Basic component (fig. 1) includes biological gender (XX or XY). Physiological component includes the senses, such as sight, hearing, smell and taste, as well as physiological and medical conditions in the body. Cognitive component includes thoughts, knowledge, ignorance and the imagination in men and women's sexuality. The personal component includes gender identity; in what way we feel we are a gender, male and female. Sexual desire, fantasies and wishes are also part of the personal component. The relational component includes presence; how we act and communicate in a sexual situation, how we touch others, seduce, talk to each other, etc.(2).

The World Health Organization (WHO) defines the concept of sexuality through the lenses of sexual health and sexual rights. The definition of sexual health entails a comprehensive and integrated approach to sexuality, relationships and sexual experiences. The necessity of respecting, protecting and fulfilling sexual rights as a means of achieving well-being, are emphasised (3). Today there is a World Association for Sexual Health (WAS) that, among other things, have developed a Declaration of sexual rights (4)

Society's view on sexuality influences how people perceive themselves and others. E.g. in the media, sexuality is often closely related to youth, beauty and success. Such ‘media-captured stereotypes’ make acceptance of sexuality difficult for those who do not fit into this ‘frame’. For instance, it has been questioned whether PWID have sexuality, and whether they should have the possibility to be sexually active. An understanding of sexual orientation opens the possibility to diverse ways of expressing sexual activities. Based on this understanding, PWID are sexual individuals who experience sexuality just like other people. People do not have sex only for reproduction, but also because it contributes to a good quality of life. Humans are born as sexual beings, and everybody undergoes a personal sexual development (5). 

‘Cohabitation and sexuality’ is a familiar topic for most of us. Friends, lovers, caring, emotions, knowledge of your own body, contraception, flirting, masturbation, intercourse and so on, are topics we meet in our lives. In addition, we have to handle topics such as norms, rules, laws, ethics, sexual deviations and technical aids. E.g. people with ID are vulnerable due to cognitive difficulties (6) and legal security is important to protect them  against abuse, or arbitrariness by the authorities.   

Parents usually have close contact with their children and adolescents. Nevertheless, talking about autonomy and sexuality can be difficult. There are several reasons for this. This lack of confidence and openness may be due to lack of words the child understands or is familiar with. Gender, age, up-bringing, ethnic origin, religion and social harmony may also influence the conversation. The level of disabilities may also have an influence, as well as how visible a disability is. People with disabilities have a natural right to participate in everyday life and in society. Self-determination is a human right that enables us to manage our lives and sexuality. You may read more about this topic in the Human Rights module.

Experiences shows that parents and caretakers often neglect sexuality in PWID (6). For some PWID there can be a connection between lack of attention on gender and sexuality and the development of challenging behaviour. Some claim that a person’s sexual needs are also triggers for challenging behaviour (7). Furthermore, the lack of knowledge of the relationship between challenging behaviours and sexuality can cause misunderstandings in interactions between parents and children, as well as between service providers and service recipients (7: 434).

2.2. Knowledge about yourselves

Photo: S. Kühle-Hansen

Identity is an important aspect of human life that is often affected by social characteristics such as:

• Gender 

• Ethnicity 

• Group membership 

• Family

Identity development is a dynamic process starting in childhood and continuing throughout life. Developmental characteristics are important for self-identity of children and youth's with ID. Therefore, we should provide a particular focus on supporting the construction of their identity (6, 8-11).

When supporting identity construction in PWID, we highlight the differences between being a child, a young adult and an adult. One element of this is to talk about the impact of diagnosis and disability on the everyday life of the person. The child also needs an explanation why they need help in kindergarten, school and as an adult, in their own home. An understanding of who they are should preferably be an integral part of the way they live their daily life (6, 11, 12).

There are some myths regarding individuals with ID such as “they are eternal children” or “ones that need compassion”. Today, there is an acceptance of the fact that people with ID must be respected as people with equal rights to other citizens, whatever their particularities and interests are. 

Everyone needs hope and support of their dreams. At the same time, it is important to have realistic expectations. Youth with an ID need support to develop an understanding of their own identity. Discussions about relationship and friendship may be; “When you’re older you can find a friend or a boyfriend”, “You can do nice things together. You may go to the cinema, swimming or to a cafe”. If their expectations about marrying and having children are not realistic, the subject should be discussed with care and kindness. Discussions may be "It is not a good idea to have a child when you lack resources to take care of them", "How can you have a good life without children", "How can you be a good uncle or aunt to children your sibling has?”

Activities to support PWID build knowledge about themselves:

Let them feel free to discover the world and themselves. Allow them to experience different situations, without too much help. Let them try to solve everyday situations with minimum support, e.g. say, "Go and find the food and pay for it at the cashier". Let them experience how to ask for help - a tool that may also develop their language. 

Help your child to build his or her own network in the family. Leave them alone with family members. Let them find their own way to be together and to receive feedback on who they are. To become familiar and feel safer together, ask your relatives to spend time with your child. Ask, “Can s/he play …. together with you?”, “Can you go to the kiosk and buy …. I will meet you when you are ready”. 

Talk about experiences and spend time on talking about memories. Ask your child to create a photo-album e.g. on an iPad and bring the storybook to school. They may also use it together with friends. It may be easier to talk about their personal story if they have pictures that support storytelling. It may be easier for their network to understand the child/youth when they look at pictures of the family, relatives, activities, holiday and so on.

Create picture/text books for those who cannot speak. It may be a scrapbook and a weekly picture-calendar on their mobile or iPad. Look at the pictures together and talk about people, places and events they have met the same day/week. Talk about things that happen in their community and they see in newspapers or other media, as well as new books friends talk about. 

Some PWID lack the ability to ask questions. Teach them to ask about the interests of others e.g.  “What do you like to do?”, “What do you like to eat?”, “What do you like to do in your free time?”, “What do you like to do together with your family, with friends?”, “What games do you play on your computer?” Also, teach them to speak about their own interests (12, 13).

Teach them to present themselves in a nice way: “My name is Hilde and I'm 12 years old. I go to Minthouse school and I like to make photo albums”. Work on it in a secure home environment before they practice their new skills on others.

Talk about how they can greet friends, acquaintances and new people. Talk about how we use different ways of greeting when meeting certain people. It may be nice to distinguish between good friends and random acquaintances. They may give a hug to people well-known to them, while in the case of people in more distant relationship we only nod or shake hands. Children who hug everyone may continue with this when they are older. Teach them early on how they can ‘read’ different situations. Create some rules.

Talk about human feelings with your child, how they feel in different situations, how they express their feelings, how they recognise different feelings:

• Am I kind, helpful, angry, impatient, happy? 
• What do I see when I look at myself in the mirror? 
• Do I feel like another person when I put on makeup?
• How do I feel when I am together with my best friend?
• Does my friend love me? 

Social roles are part of everyone’s personality and identity. We take different roles in different situations. Talk about what role they have and are able to take in their lives, e.g. “What role do I have when I feed the dog?” “- when I wash up?”, “- when I play games with my nephew?” Talk about how they manage their social roles, e.g. “Who am I at school?”, “How do I manage to take care of my friends?”, “Who am I when I go shopping, how do I manage it?”and so on. 

Talk about their disability: “What is the reason for my disability”, “What kind of brain damage do I have?”, “What is most difficult about my disability?”, “What is the best about my disability?”, “How do I experience my disability in different situations?”, “Do I feel that physical exercise works for me?” 

Each person with disability is different from all others with similar diagnoses. Talk about the diagnosis e.g. “How do I differentiate myself from others with the same diagnosis?” Talk about other people. “What do they need help with?” “You and your sister/brother are not similar, what do you think about that?” Some have progressive illnesses and get weaker over time. “What do you think about it?” “What is important in your life at present?”

There is an infinite number of topics you can talk about if you speak in a calm way, using simple words about a topic. These conversations may help you to be more acquainted with thoughts your child/sibling/client has. You may also find topics mentioned in this chapter in the modules of Transition to adulthood and Aging.

_{Drawing: Henriette 13 years.}

2.3. Knowledge about our body

Photo: Jørn Grønlund

Knowing our body is an essential step towards building a healthy relationship to others and ourselves. Thus, it is important that every child and young person learns something about their own sexuality such as body functions or bodily identity. (14, 15).

Knowledge about the body and sexuality for PWID must be customized to their individual functioning. Knowledge about their own body and sexuality may improve their quality of life and prevent the occurrence of future, challenging behaviour. For that to happen, both teachers and parents must be thoughtful and coordinate their efforts to offer the most appropriate pedagogical approach.

It is important to provide follow-ups in every developmental phase. Often PWID need repetitively sessions. There are several standards in guidelines for sexual education you may useful to find the right 'level' to start a conversations with your child/sibling/client. Take a look at chapter 2.4 or find it in this webpage: https://www.bzga-whocc.de/en/publications/standards-in-sexuality-education/ (15).

Activities to support PWID building knowledge about their body:

Let them get to know their own body by looking at themselves (outer identity). Take pictures and also let them take pictures of their own body: their back, face (different profiles), hands and feet. Take pictures from above and below the body. Look at the pictures together. What do the pictures show? Look at pictures from earlier on: e.g. when they were two, five or thirteen years old. Compare pictures from different ages and talk about changes. Talk about how the body develops. 

Look at each other in the mirror, talk about what both of you may see; when you are standing in different ways; where is the back, stomach and body sides. Talk about how they feel when they are running or when they are lying on their back in grass.

Tell your child/sibling/client that it is okay to explore every part of their body when they are alone or together with their boyfriend/girlfriend in a private room.

ACTIVITIES:

Case: When should you talk about body, identity and sexuality?

2.4. Sexuality education

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_{Photo: G.H Lunde}

UNESCO advocates for quality, comprehensive sexuality education, to promote health and well-being, respect for human rights and gender equality as well as for empowering children and young people to live healthy, safe and productive lives. In 2018, UNESCO published their updated International Technical Guidance on Sexuality Education. This manual is designed to assist education policy makers in all countries in designing accurate and age-appropriate curricula for children and young people aged 5 – 18+ (17).

Before the publication of this UNESCO manual, the German Federal Centre for Health Education (BZgA) and the European Network of the International Planned Parenthood Federation (IPPF EN) initiated an extensive survey about the development and status of sexuality education in Europe and Central Asia in 2016-17 and also published the International Planned Parenthood Federation. 2008. Sexual rights: an IPPF declaration. The survey covered 25 selected countries of the WHO European Region. This new research fills a major knowledge gap about information available on the status of sexuality education (18). 

People with ID need services and measures in line with their individual needs and wishes. They need assistance throughout their life, services that vary and change according to their development and life situation. The need of information is more prominent because several people with disabilities do not have the equal opportunities to learn from peers and other ‘natural sources’ about their own and other’s sexuality.

Countries have different state policies regarding services and education for PWID, but entry level education is a guaranteed right by law in many countries. In spite of these rights, inclusion of individuals with ID is a subject often discussed. 

Examples of countries that have developed action plans for the promotion of sexual and reproductive health are Finland and Norway. These action plans also include people with special needs/disabilities/ID (14, 19).

Parents and teachers are responsible for ensuring that children and young PWID learn about sexuality. Sexuality education is a broad and comprehensive topic. Its contents change as the child develops into an adolescent and later to a young adult. At the age of three, a child needs different information and support from what they need 10 years later. Besides, sexuality education influences the development of sexual attitudes and behaviour, thus helps the individual to develop a self-determined sexuality (15: 33). 

Knowledge youths and adults ought to have about sexuality:

• Have specific and basic knowledge of sex (for instance know about body-parts, sexual relations, sexual acts, etc.)
• Knowledge about the consequences of sexual acts, including sexually transmitted diseases, pregnancy, sterilization, etc.
• Have an understanding of what suitable sexual behaviour is and the framework in which it should occur
• Need to understand that sexual activity is a result of free/voluntary choice
• Need to be able to recognize potential abusive situations
• Need to be able to stand on their own feet in social and personal situations and be able to refuse any unwanted attention at any given moment in time (11).

Countries need targeted, knowledge-based programs on sexual health, adapted to educating PWID in every age, such as at kindergarten, school and workplace. Among other sources, ‘The Country Paper’ provides a pool of common developments and differences in Europe about sexuality education adapted to youth (20). 

Young people in different countries have expressed their needs in the field of sexuality education. One example is the Norwegian Association of Youth with Disabilities’ that contributed to a report examining what youth with disabilities and chronic diseases need with regards to sexual health. This report also addresses how health services meet and handle young people and young adults in need of advice and aid for sexual health, or someone to talk to about sexuality (21- text only in Norwegian). In 2018, the  Youth with Disabilities also published an e-learning course (funded by the Norwegian Government). Look at following webpage for more information (text mainly in Norwegian): https://ungefunksjonshemmede.no/politikk/seksualitet/ and https://ungefunksjonshemmede.no/arrangementer/seminar-om-e-laeringsverktoyet-sex-som-funker/.

Suggestions for other learning resources that can be adapted to people’s information/education needs in relation to sexual health:

‘Standards for Sexuality Education in Europe’ (15) intends to contribute to the introduction of holistic sexuality education. Holistic sexuality education gives children and young people unbiased, scientifically correct information on all aspects of sexuality and, at the same time, helps them to develop the skills to act upon this information. Thus, it contributes to the development of respectful, open-minded attitudes and helps to build equitable societies (p.5). The sexual education matrix (p.38-50) in this document is structured to different age groups and comprises of eight main thematic categories. Parents or teachers can pick topics that are of special interest to the group they are targeting. You can download the standards in different languages here: https://www.bzga-whocc.de/en/publications/standards-in-sexuality-education/

‘Sexual education for children and adolescents with developmental disabilities’ (22) is an Instructional Manual and an accompanying Resource Guide designed to help parents and caregivers to assist PWID in their exploration of self and sexuality. By using these resources, both parent/caregiver and family member may gain a deeper appreciation of themselves and others, and thus when the person with disability reaches adulthood they will be better prepared to live and participate as independently and safely as possible in society: http://ceacw.org/docs/parentworkbook.pdf

‘Age appropriate sexual behaviour in children and young people’ (23), is a booklet for family and friends, teachers and other professionals working with children. The learning material is about differences between sexual behaviour as part of the normal growing up process, and sexual behaviour that raises concern. The purpose of the book is to i) understand what is normal (age appropriate) sexual behaviour and sexual behaviour that may raise concern, and those extremely concerning (abusive), ii) determine when you should be concerned about a child’s or a young person’s sexual behaviour iii) determine when further professional advice is required, and know who to contact. https://www.secasa.com.au/assets/Documents/Age-appropriate-behaviours-book.pdf.  Also, look at https://www.secasa.com.au/assets/Documents/Age-appropriate-behaviours-1.pdf

There are further sources on education in sexual health for teachers and service providers, that offer sexual education to PWID. One example is from Oslo Metropolitan University (OsloMet). Look at these weblink: http://www.hioa.no/Studier-og-kurs/HF/Evu/Seksuell-helse-og-seksualitetsundervisning and http://www.hioa.no/Studier-og-kurs/HF/Evu/Sexologi-og-funksjonshemming

ACTIVITIES:

Case: Women and men in the internet. Right to sexual education

•                  Look at this report (18): https://www.bzga-whocc.de/fileadmin/user_upload/Dokumente/BZgA_IPPFEN_ComprehensiveStudyReport_Online.pdf and find out about the status of sexual education in your country.

•                  How would you plan to talk about the importance of sexual education with your child's teacher?

2.5. References

1.         Willard EOG. Sexology as the Philosophy of Life, implying Social organisation and Government. Chicago: J.R.Walch; 1867 [cited 2018. Available from: http://www.iapsop.com/ssoc/1867__willard___sexology.pdf.

2.         Bay-Hansen J. Conversation about sexuality. Sygeplejersken [Internet]. 2014 [cited 2018; (9):[77-85 pp.]. Available from: https://dsr.dk/sygeplejersken/arkiv/sy-nr-2014-9/samtalen-om-seksualitet.

3.         Pan American Health Organization (PAHO), World Association for Sexual Health (WAS), World Health Organisation (WHO). Sexual and reproductive health: WHO; 2006 [cited 2018. Available from: https://www.who.int/reproductivehealth/topics/sexual_health/sh_definitions/en/.

4.         World Assosication for Sexual Health (WAS). Declaration of Sexual Rights: WAS; 1999 [cited 2018. 2014:[Available from: http://www.worldsexology.org/resources/declaration-of-sexual-rights/.

5.         Graugaard C. Sexleksikon: Fra abe til aarestrup. København: Rosinante Forlag; 2001. p. 596.

6.         Vildalen S. Seksualitetens betydning for utvikling og relasjoner. Oslo: Gyldendal akademisk; 2014.

7.         Clements J, Clare I, Ezelle LA. Real men, real women, real lives? Gender issues in learning disabilities and challenging behaviour. . Disability & Society [Internet]. 1995; 10(4):[425-35 pp.]. Available from: https://www.tandfonline.com/doi/abs/10.1080/09687599550023435.

8.         Gustavsson A. Utviklingsstörningens sociala innebörder och förståelseformer. In: Tideman M, editor. Handikapp, synsätt, principer, perspektiv. Stocholm: Johansson & Skyttermo Förlag; 1999. p. 47-66.

9.         Wolfensberger W. A brief introduction to Social Role Valorization as a high-order concept for structuring human services. Syracuse, editor. New York: Training Institute for Human Service Planning, Leadership and Change Agentry (Syracuse University); 1992.

10.       Hellzen O, Haugenes M, Østby M. ‘It’s my home and your work’: the views of a filmed vignette describing a challenging everyday situation from the perspective of people with intellectual disabilities. International Journal of Qualitative Studies on Health and Well-being [Internet]. 2018; 13(1). Available from: https://www.tandfonline.com/doi/abs/10.1080/17482631.2018.1468198.

11.       Oslo Universitetssykehus/Ullevål/Avdeling for nevrohabilitering, Habiliteringstjenesten i Hedmark, Vaksenhabiliteringa i Sogn og Fjordane, Voksenhabiliteringen Finnmark. Etablering av rutiner for forebygging, varsling og oppfølging ved overgrep mot mennesker med psykisk utviklingshemming Oslo2013 [141]. Available from: https://naku.no/sites/default/files/SUMO%20rapport.pdf.

12.       Schalock RL, Luckasson RA, Shogren KA, Borthwick-Duffy S, Bradley V, Buntinx WHE, et al. The Renaming of Mental Retardation: Understanding the Change to the Term Intellectual Disability. Perspectives [Internet]. 2007; 45(2):[116-24 pp.]. Available from: http://edu.hioa.no/SeksuellhelseAnnet/Intellectual%20disability.pdf.

13.       Tarnai B, Wolfe PS. Social stories for sexuality education for persons with autism/pervasive developmental disorder2008; 26(1):[29-36 pp.]. Available from: https://pennstate.pure.elsevier.com/en/publications/social-stories-for-sexuality-education-for-persons-with-autismper.

14.       Klemetti R, Raussi-Lehto E. Promote, prevent, influence. The action programme for the promotion of sexual and reproductive health in 2014–2020 Helsinki, Finland: National Institute for Health and Welfare; 2018. Available from: http://www.julkari.fi/bitstream/handle/10024/136169/TY%C3%962018_18_Promote%2c%20prevent%2c%20influence_WEBk.pdf?sequence=1&isAllowed=y.

15.       WHO Regional Office for Europe, the Federal Centre for Health Education (BZgA), the members of the European Expert Group on Sexuality Education. Standards in Sexuality Education Cologne: Bundeszentrale für gesundheitliche Aufklärung, BZgA [Federal Centre for Health Education (BZgA)]; 2010 [Christine Winkelmann:[68]. Available from: https://www.bzga-whocc.de/en/publications/standards-in-sexuality-education/.

16.       Anderson K, Baker RB. Ask Lara [2D Animated]. BBC Learning, TV Catalunya, VPRO Holland; 2011 [Target audience: 8-12 year]. Available from: http://redkite-animation.com/_redkite/projects/ask-lara-launches-bbc-learning-zone/.

17.       International technical guidance on sexuality education. An evidence-informed approach [Internet]. United Nations Educational, Scientific and Cultural Organization (UNESCO). 2018. Available from: http://unesdoc.unesco.org/images/0026/002607/260770e.pdf.

18.       German Federal Centre for Health Education (BZgA). Sexuality and Education in Europe and Central Asia. State of Art and Recent Development Köln: BZgA; 2018 [Available from: https://www.bzga-whocc.de/fileadmin/user_upload/Dokumente/BZgA_IPPFEN_ComprehensiveStudyReport_Online.pdf.

19.       Helse- og omsorgsdepartementet. Snakk om det! Strategi for seksuell helse (2017–2022). Oslo, Norway: Helse- og omsorgsdepartementet; 2016. Available from: https://www.regjeringen.no/contentassets/284e09615fd04338a817e1160f4b10a7/strategi_seksuell_helse.pdf.

20.       Helfferich C, Heidke B. Country Papers on Youth Sex Education in Europe. Cologne: Federal Centre for Health Education, BZgA; 2006. Available from: https://www.bzga-whocc.de/fileadmin/user_upload/BZgA_Country_Papers_2006.pdf.

21.       Remme A. Sex som funker. Unges erfaringer med seksualitet og funksjonsevne. Oslo, Norway: Unge Funksjonshemmede og Helsedirektoratet; 2017.

22.       Baxley DL, Zendell A. Sexuality Education for Children and Adolescents with Developmental Disabilities, an Instuctional Manual for Parents and Caregivers of and Individuals with Developmental Disabiliteis. Sexuality Across the Lifespan. Florida: Florida Developmental Disabilities Council, Inc.; 2005 [cited 2018. Available from: http://ceacw.org/docs/parentworkbook.pdf.

23.       South Eastern Centre Against Sexual Assault & Family Violence (CASA). Age Appropriate Sexual Behaviours in Children and Young People. Information for carers, professionals and the general public. East Bentleigh, Australia: South Eastern Centre Against Sexual Assault & Family Violence (SECASA) 2017. Available from: https://www.secasa.com.au/pages/age-appropriate-sexual-behaviour-in-children-and-young-people/

https://www.secasa.com.au/assets/Documents/Age-appropriate-behaviours-book.pdf.

Additional literature:

Barnard-Brak, L., Schmidt, M., Chesnut, S., Wei, T. & Richman, D. Predictors of Access to Sex Education for Children with Intellectual Disabilities in Public Schools. Intellectual and developmental disabilities Vol. 52, No. 2, s. 85 – 97; 2014 

Doyle, J. Improving sexual health education for young people with learning disabilities. Pediatric Nursing vol 20 no 4, 26 – 28; 2008.

Frawley, P. & Wilson, N.J. Young People with Intellectual Disability Talking About Sexuality Education and Information. Springer science; 2016. http://link.springer.com.ezproxy.hioa.no/article/10.1007/s11195-016-9460-x469-484.

Harader, D.L., Fullwood, L., Hawthorne, M.S. (2009).Sexuality Among Adolescents with Moderate Disabilities – Promoting Positive Sexual Development. 17-20

3. Cooperation

Picture: Sculpture by G. Vigeland

The value of communication between parents and children, as well as with professionals, is essential when it comes to sexual health. The purpose of this chapter is to provide ideas about with whom and how parents, children and professionals may cooperate.

This chapter contains information about models for intervention when PWID need information/education in their sexuality as well as support to deal with challenges they may face during their life span. Topics you can read about in this main chapter are:

• The PLISSIT-model

• Cooperation between children and parents

• Cooperation with professionals

3.1. PLISSIT - model

The PLISSIT- model (1) gives an overview of what kind of support parents (two first levels) or professionals (top levels) can provide PWID, when they need help with sexual choices, information or treatment.  The model shows when there is a need for special competences in order to provide treatment e.g. in case of serious sexual problems. Watch the video and learn more about the PLISSIT-model.

Film: The PLISSIT-model (1):

The design of the model is a pyramid, with different levels of support. The bottom of the pyramid indicate the lowest level of need for support. At these two bottom levels, the therapist (or parent) needs the least amount of competence to be able to support the person in solving their sexual problems.

An explanation of the levels in the model, from bottom to top, is the following (1):

P (Permission) means to allow. This level of support implies that the person is experiences acceptance for bringing up and discussing sensitive and intimate sexual subjects. In this way, it might be possible to find out if there is a need  for intervention. Acceptance also gives the person a sign that sexuality is a normal part of human life, in every life situation. ‘The P-level’ encompass every topic related to sexuality; anatomy, physiology, health, family, identity, contraceptives, hygiene, friends, girlfriend/ boyfriend, emotions, masturbation, sexual turn-ons, intercourse, menopause, lust… etc. At this level, most people are able to talk about sexuality together with PWID. It is important that the person feels free to talk about every part of sexual health e.g. homosexuality.

LI (Limited Information) means that the level of information offered is adequate and given through general information about questions about disease, diagnosis and symptoms, so that the person receives answers to his/ her worries and challenges to a largest possible degree. Such an approach is only relevant to some part of the population, for instance children old enough to undertake sexual education at school. In most countries, teachers and public health-nurses educate children in primary and secondary school but most PWID need several repetitions and facilitated education. Parents as well as disability nurses and social workers who mainly work with PWID are especially responsible for providing limited information or refer PWID to others.

SS (Specific Suggestions) stands for specific advice and implies that a therapist needs to adjust information and means of treatment to suit the person. It includes the possibility to offer treatment in the shape of cognitive therapy, medical treatments, aids etc. A therapist or a person with the proper competences in sexuality offer consultations at this level (SS).

IT (Intensive Therapy) implies the treatment of serious sexual problems, for instance abuse, gender confusion, serious harm in relations, paedophiles, etc. In order to treat sexual problems with an intensive therapy (IT), you need to be an expert in sexology: a psychiatrist, a psychologist or a GP with specialisation in sexuality. 

Measures at SS- and IP-levels of the PLISSIT-model represent treatment that demands the competence of a specialist and ought to be anchored to health services. One option is cognitive methods, like those described by Lemmon and Mizes (2), who utilize exposure-therapy in their treatment of abuse victims. This well-known method in clinical practice is considered effective.

ACTIVITIES:

• Think of your child/sibling/client or another PWID you know well: at what level of the PLISSIT-model do you think their needs of sexual support are?
• Discuss with your child/client/sibling about how you can help them best to feel accepted for bringing up and discussing sensitive and intimate sexual subjects.
• Discuss with your child/client/sibling about possibilities available in your country to receive help/treatments for sexual problems: How they should ask for help and how the support/treatment is supposed to be offered.

3.2. Cooperation between children and parents

Photo: S. Kühle- Hansen

Parents should aim to create a friendly sexual setting for their children in general and especially for children with ID at home. Parents themselves often have to be trained to talk about sexuality in a relaxing way, as a subject among other subjects. Most parents will meet sexual questions and challenges by their children/ adolescents in certain periods of their lives. Most people have sexual health issues, which is a fact we have to accept, and that can make us less afraid to talk about it.

Persons with ID are not expected to be passive recipients of services and others’ instructions. They are experts of their own lives. Involvement in other people’s lives means focusing on individual needs and wishes. PWID need to experience influence and control over their own lives. This includes respect for an individual’s sexual life and gender. The most important aspect in the cooperation between the individual, parents and health professionals is good and conductive communication. 

Individuals with ID need to get an opportunity to develop their own resources in relation to, and in dialogue with others. Dialogue can be a useful tool in creating the best possible cooperation between children and parents. Full inclusion in every decision and discussion may be time-consuming and challenging for everybody, but it is very important. 

Some parents find out that children and adolescents have huge sexual drifts that also can cause troubles for the family in general. Thus, it is necessary to tackle in close collaboration with your own children, but professionals may also be helpful. 

Parents (and service providers) should accept that their children/client have a diversity of feelings and sexual behaviour (3). Most people develop sexuality by themselves (alone), while others develop cohabitation or sexuality together with others. Individuals with ID have, like everyone else, a right to freedom and self-determination. It requires facilitation, training, and support to teach PWID to make personal choices (4).

Photo: W. Fjeld

It is a human right to express your opinion and be able to have an influence on issues about yourself, such as incidents that affect your self-image, gender role, and sexuality. Inclusion gives us a feeling of being able to make informed choices and strengthen our competence. Look at the module Human rights. 

Individuals with ID have the right to influence their own lives. They can and shall participate in making decisions in their everyday life. Parent need to engage their children and train them to make their own choices. For some PWID, this may start with simple choices between different drinks, food, toys, etc. Other PWID may make more complex choices e.g. to spend time with family, friends or a girl/boyfriend.

Not every person with ID is able to ‘control and anticipate’ consequences of their own choices and behaviour, - or determine if their behaviour is acceptable or not (1). However, they show what they want through their behaviour and actions. Your child may show sexual behaviour by rubbing themselves against furniture or doorframes, or pressing themselves to the floor while doing rotating movements with their abdomen. Such behaviour is usually sexually stimulating. They stimulate abdomen, penis/clitoris and the surrounding areas. When you recognise this action as a sexual behaviour, you should guide your child to perform the stimulation in an appropriate/private environment. Most parents do not want their children to perform such acts in the living room, kitchen or during visits to other people. However, most of us may accept this behaviour when the child is in their own bedroom or in another suitable space. 

If you, as a parent, want your child to do such an act in their own bedroom (not in the living room or kitchen), you may calmly show a picture of the bedroom every time you see them lay down on the floor or rub against furniture, and say: Go to your room. You may lead them calmly to the room, let them sit or lay down on the bed or on the floor. When you see the child is okay, you may calmly leave the room. Let them stay in the room a bit on their own.

If it is difficult to guide your child to go to the bedroom, you may try to purchase a vibrator (triangular, long, or other), or a vibrating ball you put in the bedroom or in the drawer beside the bed. When the child starts to stimulate themselves in the living room, take the vibrator and put it on the bed or on the floor at the bedroom. Go to the bedroom and lead them to pick up the vibrator while you are holding the elbow. Let them feel the vibration towards the body or abdomen (while you hold their elbow). Avoid contact between yourself and the vibrator, and your bodies, except your hand on the elbow. If the child presses the vibrator to the body or abdomen, you leave the room quietly. Let them alone for 15-20 minutes, until they finish. Go back to the bedroom and put away the vibrator in its fixed place.

Never let the vibrator be used in the living room, kitchen etc., only let them be used it in the bedroom. You should allow the vibrator only in rooms you have decided on. On vacations, a vibrating object/ vibrator may be in the luggage and used at appropriate time and space.

ACTIVITIES: 

• How would you defend that everyone, including PWID, should be allowed to express ‘their way of doing sex', - in an appropriate setting?
• If you discover that your child or another adult is rubbing their abdomen against the floor, furniture or other things, do you recognise this as sexual stimulation? How will you behave and why? Do you believe that they will continue with it even if you try to stop them?
• Discuss with your child how you can build openness and trust to enable good conversations about sexuality?
• Find out what your child knows about important sexual issues.
• Find out if your child would like to discuss it with a professional what works with sexuality.
• Look at this link http://www.worldsexology.org/resources/declaration-of-sexual-rights/ and find out what is your responsibility, what is professionals’ responsibility and what is your child’s/sibling’s responsibility.

3.3. Cooperation with professionals

Photo: G.H. Lunde

In order to secure proper sexual development, parents may take their children with them to discuss their situation with collaborators and professionals in sexual health, but also others. Parents may ask professionals to help them provide children with information and to motivate them to talk about their need of support in sexual issues.

However, we have to remember that the person is an expert of their own life and an empowered person can decide what support they need (5). Parents and professionals e.g. at the childcare centre, school or health institution are responsible for securing chances for PWID to make decisions on their own lives. A prerequisite for this is to have knowledge, relevant information and be involved in daily tasks. Most individuals with ID are competent to give their consent, they are able to fully consent because they: 

• Are able to speak/talk about her/his choices
• Are able to understand relevant information in order to make a decision
• Have the ability to understand the consequences of their own actions/ choices
• Are able to use information weighing factors for and against a certain choice
• Are able to evaluate which areas they are able to give their consent in (and when the person is not able to consent in every situation) 

The above features are described by psychology specialist B. Holden (Rehabilitation Centre at Sykehuset innlandet, Norway) (6). In order to understand and make decisions about their own life, most people with ID need training in the skills mentioned above.

Since PWID often experience complex sexual challenges (it may be a combination of physical and psychological issues that a disability may reinforce), cooperation between professionals is beneficial for the person and their relatives. Professionals are stronger together and they can recognise more aspects of a person’s life, as well as in other people’s lives. Professionals together are better at finding holistic approaches for the best interest of the PWID.

Examples of professionals that parents and people with ID may cooperate with are (3):

• The healthcare/disability nurse at a childcare centre or social services can help to coordinate services for the child and the family.
• The GP may be an important partner. Together with the patient (and their relatives), the GP ought to decide whether it is necessary to make a referral to other specialists that can be beneficial for the patient to talk to, be treated by or apply to for guidance.
• Employees at a daycare centre or kindergarten may be important partners when it comes to facilitating educational measures for the child.
• Teachers are natural collaborators in the school. They are responsible for providing well-adapted learning, - also in sexual health.
• Some families may need help by professionals at mental health services or child welfare services.
  

ACTIVITIES:

• Go to the Human rights module and find out more about consent and self-determination/autonomy
• Go to the Communication module and find examples of how to cooperate with your child/sibling/client and other professionals, relate this to your child’s sexual health.
• Try to find out who in your region you may cooperate with in order to help your child developing and experiencing safe and stimulation living conditions (In Europe, these services differ from country to country).

3.4. References

1.         Annon J, S. The PLISSIT Model: a proposed conceptual scheme for the behavioural treatment of sexual problems. Journal of Sex Education and Therapy. 1976;2(1):1–15.

2.         Lemmon VA, Mizes JS. Effectiveness of exposure therapy: A case study of posttraumatic stress disorder and mental retardation. Cognitive and Behavioral Practice. 2002;9(4):317–23.

3.         Vildalen S, Langfeldt T. Seksualitetens betydning for utvikling og relasjoner : med utgangspunkt i Thore Langfeldts tenkning og arbeid. Oslo: Gyldendal akademisk; 2014.

4.         Barne/ungdoms- og familiedirektoratet (Bufdir). Selvbestemmelse og brukermedvirkning Tønsberg: Bufdir; 2016 [updated 02. 05. 2017. Available from: https://www.bufdir.no/Nedsatt_funksjonsevne/Rettighetene_til_personer_med_utviklingshemming/Selvbestemmelse_og_brukermedvirkning/.

5.         Tveiten S. Den vet best hvor skoen trykker- : om veiledning i empowermentprosessen. Bergen: Fagbokforlaget; 2007.

6.         Holden B. Vurdering av kapittel 9 i khol når det gjelder seksualisert atferd.  Nettverk: funksjonshemmede, Seksualitet og samliv (NFSS): NFSS; 2018.

Additional literature:

Newman K, Helzner JF. IPPF Charter on Sexual and Reproductive Rights. International Planned Parenthood Federation. Journal of women’s health & gender-based medicine. 1999;8(4):459–63.

Melanie. Nind. What is inclusive research? London: Bloomsbury Academic; 2014.

Horne, S., Eknes, J. NOU - om rettigheter for mennesker med utviklingshemming. SOR rapport. 2016;62(6):2–5.

Snakk om det! Strategi for seksuell helse (2017–2022) [Internet]. Helse- og omsorgsdepartementet; 2016. Available at: https://www.regjeringen.no/contentassets/284e09615fd04338a817e1160f4b10a7/strategi_seksuell_helse.pdf

Strnadová I, Walmsley J. Peer‐reviewed articles on inclusive research: Do co‐researchers with intellectual disabilities have a voice? Journal of Applied Research in Intellectual Disabilities. 2018;31(1):132–41.

Jan Walmsley, Kelley Johnson. Inclusive research with people with learning disabilities : past, present, and futures. London: J. Kingsley; 2003.

4. Socialisation and sexuality

Photo: Watercolour by G.Dietrichson 

The purpose of this chapter is to provide information about the link between socialisation and sexuality. The main headlines in this chapter are: 

• Socialisation
• Sexual script theory
• Negative script

4.1. Socialisation

Human sexuality undergoes a socialisation process from cradle to grave, while multiple aspects affect your behaviour: culture, religion, law, sexual habits, linguistic and social constructions. Everyone is born into the world with different prerequisites and opportunities, that provide a basis for human development and interaction with the environment and culture.

Sexuality is not static, but relational because human beings live in social reality. Social construction is the interaction between individual assumptions and sexuality. In a complex interaction, the individual affects society as well as society affects the individual. Culture and relationships change people all the way down to the smallest detail. Behaviour maintained (increased) by reinforcement or reduced by negative environmental claims tells us whose behaviour is not acceptable. The individual's script modifies and adapts itself into the cultural environment.

Social scripts conceptualize mental representations individuals construct to make sense of their experience, including their own behaviour as well as others’. To understand the interaction between themselves and the environment, young people and adults with ID, as well as parents, have the advantage of being conscious of their sexual history. When you have reflected upon your history, it is easier to gain insight of positive and negative experiences regarding the body, gender identity and sexuality. This insight may also affects attitudes (1).

ACTIVITIES:  

• Go as far back as you remember in your sexual history: What positive and negative events do you remember? What situations are your clearest memories? Why? What do these situations mean in your life today? What have these experiences done to you as a person and to your life?
• Try to remember the first person who told you about good emotions connected to sexuality.
• Think of the kind of words you use when you talk about sexuality. Do you think your child understands these words? Do your feel free and confident when you use these words? Do you feel that you have proper words to use in a conversation with your child about sexuality?

Photo: W. Fjeld

4.2. Sexual Script Theory

Photo: G.H. Lunde

Sociologists William Simon and John H. Gagnon (1986) developed the sexual script theory in the 1970s  and ‘80s. Its basic premise was that all social behaviour, including sexual behaviour, is socially scripted. The interpretation of reality, including human behaviour, is derived from shared beliefs within a particular social group and explains how sexual behaviour is developed and interpreted (2, 3). 

The term, sexual script explains a person's attitudes and knowledge about and expectations of sexual situations they experience (1). Sexual scripts also explain the variations in expectations different people have abput how they should behave in ‘sexual situations’. The theory indicate expectations of how sexual behaviour should be expressed (2). Some central concepts in sexual script theory are (2, 3):

• Cultural scenarios: describes the general cast of characters (roles) and relationships among them. Yet, usually this is not enough to provide concrete direction to guide actual interpersonal behaviour in specific situations. This is where the interpersonal level of sexual scripts enters
• The interpersonal scripts: Some factors that appear in certain situations and become meaningful. This term is based on interactions in which people transform the narratives (stories) into meaningful actions. The individual's space and roles are shaped, but adapted to their environment's expectations
• The intrapsychic script: may entail specific plans or strategies for carrying out interpersonal script. It includes fantasies, memories and mental rehearsals, and represent the particulars of each individual’s unique sexuality, including those aspects that cannot be formed into words.  

The intrapsychic script is a major challenge for some PWID because it requires empathic skills and an understanding of the partner's role in a relationship. However, PWID have the same longings and wishes for love relationships as people without ID. It is a fundamental human right to express your feelings that people with ID also have. 

It might be questioned if other people are able to make decision on behalf of another adult person’s love and sexuality: Are parents able to make such decisions? What about employers; should they say anything about it? The answers to this is that other people may provide support and supervision. A person feels devaluated when other people try to prevent them from developing their own script/own story, gaining experience based on their own needs (4). People are ready to sacrifice things in their lives, to be able to follow wishes and need of love. To have a boyfriend/lover can be very important for a PWID.

4.3. Negative sexual script

Negative script

Photo. G. H. Lunde

Some PWID develop challenging behaviour (1: 88). Some have mental or physical problems. Mental problems and depression can reduce sexual functions because they often lead to less initiative and activity. Some may have a generally lower mood level. Side effects of drugs can also lead to a lower desire to engage in sexual activities. Physical injury, violent abuse (5), chronic illnesses, stress disorders, muscular problems, pelvic floor pain and abnormalities in genital organs can all lead to sexual problems and impaired quality of life (1).

PWID may face challenges in relationships due to cognitive, mental and physical problems. Relational injuries are about difficulties with trust in others, difficulty in engaging and creating sexual relationships, and difficulties in establishing close relationships. Some PWID have trouble understanding the difference between a friend and a lover. They struggle to understand what they can or cannot do (according to tradition) with other people. This may happen because they lack insight into consequences of their choice. 

Some people have trouble with saying no when another person touches their body in a way they do not like. Some are naive and gullible, and thus exploited physically and economically. With an ID, it is more common to misunderstand communication, irony and ambiguous opinions, that can result in them believing they are valued rather than bullied. 

Another issue today is access to the world and people. The problem is not that young people use technology. It is appropriate for them to develop technology skills and knowledge that they will need throughout their life. Problems arise when young people use technology to engage in sexually problematic or abusive behaviour. From time to time, we detect bullying or blackmailing of others, transmitting images or videos that are illegal under current legislation. One may also be contacted by people who intend to exploit them that can be a difficult to PWID to recognise.  

You may ask the person if it is okay to assess whether they are at risk of sexual exploitation. Some countries have developed assessments that summarize data in a risk analysis. One example is the SUMO report from Norway (6). This report describes conditions in order to verify if PWID are feeling safe or not. You may also talk with the person about what they like to do; who they like or not like, to be together with, who do they like or detest a lot, etc. 

PWID need supervision to learn differentiate between situations, time and place, as well as childish versus adult-like behaviour. Training on social behaviour may start when the child is small and repeated during the child’s other development phases. Sometimes it is easier to teach small children to acquire good habits. 

With regards to sexting and sending naked images we should ask if these activities are appropriate. Are they legal? Are they part of normal behaviour and adolescent flirting, or is it abusive behaviour? (7)

In the webpage below you can find an overview of what the Centre against Sexual Assault & Family Violence (SECASA) (8) considers to be ‘age appropriate behaviour’ and ‘worrying behaviour’. The table describes “age appropriate sexual behaviour in children and young people” from a normative perspective. The table defines if a sexual behaviour is ‘age-appropriate (normal)’, ‘concerning’ or ‘very concerning’ in the four age categories 0-4, 5-9, 9-12 and 13-18, as well as for PWID (8): https://www.secasa.com.au/assets/Documents/Age-appropriate-behaviours-book.pdf

Photo. G. H. Lunde

ACTIVITIES:

• Who should decide if a PWID is able to develop a relationship of love and have a sexual partner? 
• Discuss with your child/sibling/client and ask how important it is for them to have someone who knows them well, who listens to them and understands how their life is? Also discuss how important this kind of relationship is for them to talk freely about sexual issues.
• Discuss with your child/sibling/client about the meaning of legal and unlawful sexual actions: clarify juridical concepts; where the border are; what is the alternative, etc. 

4.4. References

1.         Vildalen S, Langfeldt T. Seksualitetens betydning for utvikling og relasjoner : med utgangspunkt i Thore Langfeldts tenkning og arbeid. Oslo: Gyldendal akademisk; 2014.

2.         Simon W, Gagnon JH. Sexual Scripts: Permanence and Change Archives of Sexual Behavior. 1986;15(2):97-120.

3.         Wiederman MW. Sexual Script Theory: Past, Present, and Future. In: Delamater J, Plante RF, editors. Handbook of the Sociology of Sexualities Handbooks of Sociology and Social Research. Switzerland: Springer International Publishing; 2015. p. 7-16.

4.         Löfgren-Mårtenson L, Sorbring E, Molin M. “T@ngled Up in Blue”: Views of Parents and Professionals on Internet Use for Sexual Purposes Among Young People with Intellectual Disabilities. Sexuality and Disability. 2015;33(4):533–44.

5.         Barstad B. Ingen hemmelighet. Available from: http://www.samordningsradet.no/ingenhemmeligheter1.cfm.

6.         Oslo Universitetssykehus/Ullevål/Avdeling for nevrohabilitering, Habiliteringstjenesten i Hedmark, Vaksenhabiliteringa i Sogn og Fjordane, Voksenhabiliteringen Finnmark. Etablering av rutiner for forebygging, varsling og oppfølging ved overgrep mot mennesker med psykisk utviklingshemming Oslo2013 [141]. Available from: https://naku.no/sites/default/files/SUMO%20rapport.pdf.

7.         Kruse AE. Unge som begår seksuelle overgrep2011. Available from: https://www.nkvts.no/rapport/unge-som-begar-seksuelle-overgrep/.

8.         South Eastern Centre Against Sexual Assault & Family Violence (CASA). Age Appropriate Sexual Behaviours in Children and Young People. Information for carers, professionals and the general public. East Bentleigh, Australia: South Eastern Centre Against Sexual Assault & Family Violence (SECASA) 2017. Available from: https://www.secasa.com.au/pages/age-appropriate-sexual-behaviour-in-children-and-young-people/

https://www.secasa.com.au/assets/Documents/Age-appropriate-behaviours-book.pdf.

Additional literature:

Rendina H. When Parsimony Is Not Enough: Considering Dual Processes and Dual Levels of Influence in Sexual Decision Making. Archives of Sexual Behavior. 2015;44(7):1937–47.

5. Emotions and Body

Photo: Sculpture by G. Vigeland

The purpose of this chapter is to provide information about the importance of knowing your own emotions and body. At the end of this chapter the focus is on talking about puberty as well as sexual behaviour that may be challenging. Challenging behaviour is often culturally influenced. Therefore, the content of this chapter must be viewed in relation to cultural and social rules that is common in your country. Topics you can read about in this chapter are:

• Emotions
• Body
• Men`s reproductive and sexual system
• Women`s reproductive and sexual system
• Puberty
• Menstruation
• Masturbation
• Talking and teaching about puberty
• Challenging sexual behaviour 

5.1. Emotions

Photo. Sculpture by G. Vigeland

Most people have feelings of a sexual nature. The ability to understand these feelings and the prerequisites necessary to handle them varies (1). Individuals with ID mostly need help describing and understanding these feelings.

During puberty, various feelings of young people are awakened. They change as a human being. Like others, some youths with ID develop stronger emotions than earlier. Some can feel a tingling in their tummy; they fall in love, feel embarrassment, anger and other emotions. They also feel that their body has areas that feel nice to touch. We all need to learn to get to know our own bodies and emotions (2). 

Young people fall in love with pop-stars, the bus driver or another teenager at school. Some think about another person all the time. A girl might like another girl or a boy another boy. It is important to be able to recognise and express your own feelings and tell others about your likes or dislikes. It is also important to be able to identify emotional expressions of others. You should be able to define what a girlfriend/boyfriend is compared to a friend (1). 

It is a good idea for young people to learn to know their own body and emotions. A high number of young people cannot tell right from wrong because no one has talked to them about it. It is important to learn to know your own limits before you get to know someone else or before someone puts pressure on you to do something you have not experienced before. 

Parents need to lay the foundations and support a normal and healthy sexual development based on self-worth and respect for yourself and others. This is true if there is dysfunction or not. The foundation for self-worth and relations to others develop early in a child. For a PWID sexual awakening can be extra challenging if they are not guided towards a healthy development. The child needs to feel fundamentally safe and accepted. This is important for a healthy sexual development.  

A child with ID can be inconsistent in signalling their own needs and wishes, and therefore receives less stimulation for communication and activity (3). Interaction between parents and children with a dysfunction may also be full of worries and sorrow in some cases (4). To have a good relationship with your own body and experience good relationships is a good basis for further development. Closeness, tenderness and cooperation in the environment where the child gradually experiences being heard and seen are important factors in the first stages. 

Studies show that children who experience a lot of body contact and attention become more curious and explore their own bodies more (5). For children with a dysfunction, this early stimulus is of special importance because they are slow learners and need more time to understand how the body functions and how it can be a source of pleasure (6).

An example: People with multiple handicap receive body-massage once a week 

ACTIVITIES:

• All places of education should offer courses about sexual health (7, 8). You find the meaning of words, the feeling of using ‘sexuality related’ words, as well as experience ‘the world’ together. Talk with your child/sibling/client about the questions below and think of what these words means to you?

• What does it mean to be cranky or sulky, grumpy, happy, angry, insulted? How does it feel? Do they have any examples?
• What does it mean to be moody and what are ‘strong feelings’?  
• What does it mean to be gentle or rough? What does it feel like? Do they have any examples?
• What is a friend, girlfriend/ boyfriend, lover, infidelity, sex, lesbian, etc.? 
• What kinds of feelings are ‘evoked’? 
• What does it mean to kiss and hug?
• What do the terms closeness and warmth mean? 
• Does one have one girlfriend/ boyfriend or is it possible to have three? What are your thoughts/other’s thoughts on this topic? 
• What do shame and guilt feel like?
• How can sexuality feel nice? What are sexual feelings? 
• What does consent mean?
• What does “ambivalent feelings” mean?
  
  
  Watch the video below and talk about different kinds of emotions. Talk about what emotions your child/sibling/client think they have and/or struggle to express.
  

Alfred & Shadow - A short story about emotions

5.2. Body

Photo: Stine Kuhle-Hansen

For PWID, there is often a mismatch between the level of bodily and cognitive development (9). This makes it difficult for many people to understand what is happening with them and around them. PWID need to understand what is considered private parts of the body. It is important that they learn about this early on, so that they do not compromise, but can protect themselves.

Sexuality of is often more pronounced, and therefore easier to discover and even describe as compared to girls’ sexuality. This underlines the importance of girls in general and  especially girls with ID to be helped to understand and relate to their own body and their own sexuality.  

In the SUMO-report (10) the authors argue that it is necessary “to have basic knowledge about body-parts, sexual relations and sexual acts”.  Everyone has a right to learn about the body’s functions and being taught at their level of competence. 

Persons with ID often need more time learning new skills (11). Extra time should therefore be allocated to teaching them about the body. It is useful to look at pictures of the body. Talk about different body-parts, as well as what the different body parts are useful, too (12). You may choose to follow a systematic program like KIS (7) or KISS (8).

Picture: paintings by Schmidt-Rottluff

It is important to acquire knowledge about the body in order to recognise somatic signs. Somatic signs can include stomach ache, headache, stinging due to urinary infection, dental problems, sleep deprivation, etc. Women ought to have a gynaecology examination and men with ID ought to have their prostate checked. If there are multiple sudden somatic signs and bruises, you ought to check whether the person has been subject to abuse. 

ACTIVITIES:

• Look at body pictures in webpages below. They have different language versions, so find the language you understand most and discuss with your child/sibling/client about what you see. Listen to their understanding and tell them more if they need more explanations to understand (7): 
• Woman's body 
• Man’s body 

5.3. Men`s reproductive and sexual system

Picture: sculpture by G. Vigeland

Male’s sexual anatomy consists of external and internal sexual organs that are involved in essential body functions such as the production of hormones related to male characteristics and sexual functions such as semen production and sexual pleasure.  The male’s external sexual organs are the penis, the glans penis, the scrotum, the foreskin and the urinary meatus/ urinary tract. The male’s internal sexual organs are the testicles, the epididymis, the ejaculatory duct, the prostate and the seminal vesicles. The pelvic floor muscles are also important for sexual pleasure. 

The shaft forms the penis and a bulbous tip called the glans penis (head of the penis). The glans penis supports the foreskin. The foreskin is the skin that covers and protects the head of the penis. The urinary tract is a channel from where urine and semen exit the body. Penises come in all shapes, lengths, and sizes.

When a man is sexually aroused, the penis will swell with blood and become hard (erected). The penis becomes longer, thicker and harder than usual. For that to happen, three columns of erectable tissue are filled with blood: two corpora cavernosa lie next to each other and one spongy tissue (Corpus spongiosum) lie between them. Blood is filling the spongy tissue. The spongy tissue can be filled with blood at any time. The foreskin helps keep the glans moist and also help facilitate penetration as the skin retracts to reveal the highly sensitive glans. This gliding effect is said to increase the sexual satisfaction of both men and women during intercourse.

Erection does not always occur under voluntary control. For example, men can wake up in the morning with an erected penis without feeling aroused. During sexual activity, the erection will facilitate intercourse, the penetration of vagina or anus. This activity can lead to orgasm, with ejaculation (liberation of semen) and pleasurable feelings. Boys have their first ejaculation and start producing sperm during puberty.

Under the penis there is a pouch-like structure called the scrotum. The testicles (typically two) are placed inside the scrotum and are responsible for the production of sperm. The scrotum is outside the body, where the temperature is kept around 2-3 degrees lower than the body’s, which is essential to sperm production. Sperm is often compared to tadpoles because of how they look. 

ACTIVITY:

Discuss with your child/sibling/client about men’s visible sexual organs using this webpage: ‘The male`s sexual organs (12). 

5.4. Women`s reproductive and sexual system

Women`s reproductive and sexual system

Picture: painting by E. Munch ‘Madonna’

One description of women’s external sexual organs is the ‘vulva’ (volva or vulva). Another description is the ‘genitalia feminina externa’ (Latin), which means the outer female sex organs. The vulva consists of (12):

The mons pubis

The labia majora (outer lips) and labia minora (inner lips)

Clitoris and clitoral hood

The urinary meatus

The vaginal opening

The hymen

The Bartholin’s glands (lubricates the vagina) and Skene’s glands

The perineum (the area between anus and vulva)

The labia majora and labia minora vary widely in shape and size. The labia majora contain and protect the other structures of the vulva. During puberty, there is often a feeling of arousal or there is vaginal discharge. Often this will come a few months ahead of the first menstruation.

Photo: S. Kühle- Hansen ‘Clitoris wooden pieces

Women’s internal sexual organs are the vagina, the cervix, uterus, fallopian tubes and ovaries. The pelvic floor muscles support the structures of the vulva and is important to sexual pleasure (12). 

Breasts, the urinary tract and the anus are not generally considered sexual organs even though many people think of them as such. 

ACTIVITIES: 

• Discuss with your child/sibling/client about women’s internal and external sexual organs using this webpage ‘The woman`s sexual organs’ (12). 
• Watch the video and talk about it afterwards: Le clitoris - Animated Documentary Clitoris.

5.5. Puberty

Puberty

Picture: Painting by E. Munch

Between the ages of 6 and 12, most children continue the exploration of their own bodies and sexuality. They look into the mirror, have a shower alone, trying on clothes alone or with other children. 

Before puberty, there is little gender distinction between boys and girls. Puberty with its hormonal changes usually starts when the child is between the age of 8 and 15. For girls the start of puberty is generally between the age of 10 and 11, for boys between 11 and 12. The child body slowly transforms itself into an adult shape. Puberty begins «suddenly» with a rush of hormones being produced; a rush that will induce many new and unknown feelings in the child.

The hormones start producing chemical substances that send signals to the body. The brain (hypothalamus and XX) sends out signals to different parts of the body. Many different hormones are being produced, sex hormones among them. In the female body, oestrogen is being produced in the ovaries. In the male body, testosterone is produced in the testicles. These hormones send signals to the body, and as a result the body undergoes changes.

During puberty, bones, cartilage, fat and muscles also grow. Some grow fast, others slowly. Young people can grow over 10 cm in a year. Girls stop growing when they are about 16 years old. Boys stop growing when they are about 18 years old. The muscles of boys are doubled in puberty, less in girls. Fat stock in girls is increased on hips and breasts (2).

Before the onset of puberty, boys’ testicles are the size of hazelnuts. During puberty, they grow into walnut-size. In the male body, the Adam’s apple also starts growing. Boys can get a more unstable voice for a while. The vocal cords will grow longer and thicker. The larynx also grows and develops. Some boys’ voices can deepen by one whole octave (2).

The penis is necessary to pee. It is about 2-3 cm long before puberty. During puberty, the testicles and penis develop. Hair grows around the penis. The thighs grow longer and thicker between the ages of 10 and 15 years. At age 17 the penis is grown to adult size (2).

Drawing; Henriette 13 years old

5.6. Menstruation

Young girls often start their menstruation cycle between the ages of 9-16, but for most girls, it starts when they are around 12-14 years old. If they have not yet started their period by the time they reach 16-17, you should seek medical help.

Women have their menstruation or their period once a month. A menstruation cycle usually lasts about 28 days, but this can vary a lot from person to person. A cycle starts on the day when bleeding starts and lasts until the day before the next bleeding. In the middle of the period (28 days), ovulation happens. The egg wanders slowly from the fallopian tube to the uterus and leaves the body with menstruation blood, if you are not pregnant. The breasts often feel tender after ovulation. Stress and mental strain can cause a change in the menstruation cycle. 

Menstruation blood consists of blood, eggs and mucous from the uterus. The menstruation itself lasts for 3 to 7 days. The blood will change in colour and consistency during the period. It starts off light red and will become a darker red by the end of the period. The blood may have lumps. About 20 to 80 ml of blood is lost (40 ml is average). If you do not start to bleed at the usual time, you should see a doctor. 

To protect your clothes, sanitary pads/ panty liners, tampons or a menstrual cup can be used. A tampon works by sucking up blood in the vagina. Sanitary pads/ panty liners are secured in the underwear and will soak up the blood as it leaves the body. Menstruation pains will occur as the uterus contracts. If your child experiences a lot of pain or bleed profusely, they should consult a doctor. There are pills/ capsules to be taken for the pain and/ or to reduce bleeding.

Woman may also get pills to eliminate their menstruation for shorter or more extended periods. Many individuals with ID make use of this. Most of them are not going to have children and many of them find it difficult to keep themselves clean during the menstruation period. There is no danger connected to having sex during menstruation, but you are advised to use a condom as there is a higher risk of infection. The doctor may also give your daughter pills in order for her to not have a menstruation period.

Woman with ID and women within the autism spectrum may be shocked if they are not prepared and see blood in their panties. Many of them will find it troublesome to use sanitary pads/ panty liners. It is therefore important to start training early on. You can begin with touching panty liners, attaching it to the underwear and then swap it for a new one. It is a good idea to start this when the child is about 8-10 years old. 

Girls may produce vaginal discharge, and it can be smart to wear pantyliners, as well as changing panties daily. The use of pantyliners can be a good preparation and habituation to wearing sanitary towels. Purchase different types of pantyliners and sanitary towels, take them out and look at them multiple times. Try wearing them in the panties for short periods and practice wrapping them up and disposing of them in a suitable place. Make strategies for what the girl is to do if menstruation starts while she is at school or while being busy participating in a leisure activity.

ACTIVITIES: 

• Discuss this video together with your daughter/sibling/client:
• Find out what challenges your child experience with their menstruation

·Find out what challenges your child experience with their menstruation

Photo: G.H. Lunde

5.7. Masturbation

Picture: painting by Revold

Children generally develop sexually through play, curiosity and the need to explore. Langfeldt (5) writes that when boy ejaculate for the first time it often happens during the spring or summer. Boys often share stories of sexual experiences with each other. Girls are often more troubled during this time (menarche), perhaps because they have not yet met their femininity or because it is somehow threatening to be a woman at this stage. Further on, Langfeldt writes that boys masturbate regularly. They do this for lust and pleasure, and also before the production of semen is working properly. He thinks that boys are more open with each other about masturbation than girls and that girls often learn to masturbate from a boy later on.

Most PWID have pleasurable experiences with their own body. People who speak on behalf of PWID, may say they are happier without sexual encounters and that sexual acts may be ‘dangerous’ to those with an ID. No known research supports such an attitude. Most PWID show less frustration if they are allowed to develop their own sexuality. One should encourage them to touch their own body/ play with themselves. 

PWID often rub against furniture or door-frames, press themselves to the floor while doing rotating movements with their abdomen. Such behaviour is usually sexually stimulating. They stimulate their abdomen (penis/ clitoris and the surrounding areas) and some rub gently/ hard on the clitoris or penis. Most will experience this as pleasant. Some can get an orgasm, which is a lovely feeling, felt in the entire body that makes you to want more of it. Not everyone with ID has the muscle strength to rub his/her clitoris or penis to get an orgasm. If this is the case, it can be useful to buy sexual aids (vibratory toy). 

Video: Sexual aids (vibratory toy) (18)

Parents should explain to their children how they might touch themselves in order to get to know their own body. If parents interpret and accept this action as that of a sexual one, perhaps they need to guide the person to perform this action in a more appropriate environment. Most relatives do not wish their children to perform such acts in their living room, kitchen or while visiting others. Most can accept this happening in the child’s bedroom or other suitable space. 

If you, as a parent, want your child to have their pleasure in the bedroom (not in the living room or kitchen), every time you see them lay down on the floor or rub against furniture, calmly communicate: “Go to your room”- or  show a sign/picture of the room. Lead them calmly to the room. Let them sit or lie down on their bed, or lie down on the floor, and then calmly leave the room. Let him/her stay in the room for a bit on their own.

If it is difficult to lead them  to the bedroom, you may try to purchase a vibrator (triangular, long, or other) or a vibrating ball that you leave in the bedroom, or in the drawer of the bedside table. Take it out; put it on the bed or on the floor. Lead the person to the vibrator. While holding the individual's elbow, lead his/ her arm to the vibrator. Let the individual take the vibrator and lead it towards their body or abdomen (while you hold their elbow). Try to avoid contact between yourself and the vibrator, and the body of the individual (except for your hand on his/ her elbow). If the person presses the vibrator to his/ her body or abdomen, leave the room quietly. Leave the person alone for 15-20 minutes. Go back into the bedroom and store away the vibrator. Never let the vibrating object/vibrator be used in the living room/ kitchen, only in the bedroom. To ‘play’ with the vibrator is an activity done only in the rooms you allow for this activity to happen. During vacations, the vibrating object/vibrator can be taken along to be used in an appropriate space. 

Case: An example of a girl who learned to use a better way to stimulate herself:

When we accept that rubbing against the floor, furniture or other is sexually stimulating, we may conclude that, by doing this action, the person communicates that they wish to continue doing it. In general, adolescents with severe ID should be able to lie down for 15-20 minutes at night without an epilepsy-alarm or without a nappy. Many PWID cannot have ‘full control over the consequences of a consent’, but they can show us with their behaviour and actions what they want.

ACTIVITIES: 

·       Do you, as a parent, believe that everyone has a sexuality?

·       Do you believe that everyone should be able to express their sexuality in their own way in an appropriate setting?

·       Try to make a plan for: how could you teach your child/sibling/client masturbation?

5.8. Talking and teaching about the puberty

Sexuality

 Picture: Two open hands Stine Kühle-Hansen

Many parents underestimate the importance of talking to - and preparing - their children and teenagers for the changes that will occur during puberty (11). See also the module Transition to adulthood.

It is important to talk about the body and feelings and what will change during puberty. These conversations must start while the person is still young, not more than 8 to 9 years old. Children and teenagers who have never been exposed to openness regarding their body, their feelings and oncoming puberty can get scared by growing breasts, pimples, as well as blood coming out of their urethra. Reaching age 12-13, many youngsters find it even more embarrassing to talk about puberty than when they did it at a slightly younger age.

It is often not easy to understand social rules regarding proximity and body contact between people. It is therefore important to have some guidelines from the time the children are small (11).

In the transition between childhood and youth, most people participate in role-play. Children are often stimulated through play with other children. It is therefore important that children and adolescents with ID participate in play with other children. Parents or employees in the school should arrange for the children to participate according to their level of functioning. Children and adolescents with ID often spend a lot of time with adults who do not help them in playing with other children. If the children play a doctor with dolls, you can help the child with the game. If the children play with dolls, they can also encourage children to play with sanitary napkins and change sanitary napkins on the dolls (2).

When you help boys washing their penis, you have to teach the boy to pull the foreskin back and wash underneath. If the person showers, you should leave them alone (if you can) in the shower. If they touch the body or the thigh during care, or in the shower, parents should not interrupt the action. Let them touch their own body and get to know it. You may say, “Now I see you are fine ...” Get out of the space if you can, say "Call me when you want me to come in again". Make some rules for how the PWID may be alone in the shower/bath for a little while.

Working with the person's independence in care and toilet conditions is important. There are several good programs on how to take care of personal hygiene (13). Being self-reliant prevents abuse because the person can handle such intimate situations independently, e.g. parents should not always choose a quick way to change the diapers of the young person. Learning an early warning can be used to increase the person's self-help skills.

Both parents and employees want to prevent sexual abuse. One way to do this is to allow PWID to recognize their own and others' feelings (2, 11). A PWID should learn to express their feelings and say a clear ‘no’, if someone tries to put their hands under their clothes. Parents must train their child in saying ‘no’ and respect them for this, - also in daily activities. 

People with ID have the same variation in sexual interests, preferences and sexual orientations as the rest of the population. Most persons with ID have little or totally lack resources for developing a healthy sexuality. They lack the knowledge and attitude. This is oftne not developed at an early age, as it is with other children. PWID who are taught about sexuality and socio-sexual norms at their level of competence, have a better foundation for making the right choices for themselves and function better in society. 

Acquiring an experience with kissing is an important part of the sexual development. Some may want to kiss lightly, or some want to learn to kiss using their tongue. PWID can get an idea of what it is like to kiss by cutting a hole in a tomato and asking the person to put his or her tongue into the tomato. Then they may want to rotate their tongue inside the tomato for a few seconds. 

Kissing marks are made by kissing and sucking at the same time. It creates vacuum. The skin will get slightly bruised. Parents can tell their children about this so that they know what their peers are talking about at school. 

ACTIVITIES:

·       How can you prepare your child for the changes that will occur during puberty?

Picture: body change illustration by S. Kühle-Hansen

Breasts grow and change, and can have different shapes. The layer and amount of fat in the breasts will influence the size of breasts. The development of breasts often starts with a small swelling under the nipple. The colour and shape of the nipples may vary from woman to woman. In the breast, a milk gland will develop. The purpose of the breast is to produce milk for those women who later on will have babies. Milk from the milk glad will be sent through a tiny channel out to the nipple(17).  

Some women use bra, while others do not. If you want your child to wear a bra later, it is important to start training the youngster to wear a little top early on, as may need a long time to get used to wearing a bra.

Discuss this video with your daughter/sibling/client: about using a bra

Pimples will appear. More sweat will be produced in the armpits and in the crotch. Hair is being grown during puberty. Almost our entire body is covered by hair. The hormone called testosterone decides how hairy we become. We get more visible hair growth on our arms, legs, in our armpits and crotch. Boys get a moustache, a beard, hairy chests as well as stomachs. Even girls can get more visible hair on their upper lips and their stomachs. For many people it is difficult to understand where this hair comes from, and why we smell different (17). The adaptation to the use of deodorant is therefore important to ease into if you want your child to use deodorant later on (17).

·        Discuss the content of this video with your child/sibling/client: Accustom someone to use deodorant

5.9. Challenger Sexual behaviour

5.10. References

1.         Eggen K, Fjeld W, Malmo S, Velle S, Zachariassen P. Utviklingshemming og seksuelle overgrep – forebygging og oppfølging. Hamar: Helse Sør-Øst; 2009. Available from: http://nfss.no/docs/Overgrep_hele.pdf.

2.         Haarstad M, Mathisen A. Undervisningsopplegg: Pubertet og seksualitet Bergen: Helse Bergen, Haukeland universitetssjukehus; 2017 [updated 23.06.2017. Dette undervisningsopplegget er utarbeida for barn og unge med Asperger syndrom og høgtfungerande autisme.]. Available from: https://helse-bergen.no/avdelinger/psykisk-helsevern/psykisk-helsevern-for-barn-og-unge/undervisningsopplegg-pubertet-og-seksualitet.

3.         Nordeman M. Utvecklingsstörning och sexualitet : sexuella behov och uttrycksformer. Stockholm: Carlsson; 1999.

4.         Buttenschøn J. Sexologi : en bog for professionelle og forældre om udviklingshæmmede menneskers sexualitet. Gibraltar: EIBA-Press; 2001.

5.         Langfeldt T. Seksualitetens gleder og sorger : identiteter og uttrykksformer. Bergen: Fagbokforlaget; 2013.

6.         Vildalen S, Langfeldt T. Seksualitetens betydning for utvikling og relasjoner : med utgangspunkt i Thore Langfeldts tenkning og arbeid. Oslo: Gyldendal akademisk; 2014.

7.         Lappegård H. Kropp, Identitet og seksualitet (KIS) Bodø: Nordlandssykehuset;  [Available from: http://helsekompetanse.no/kurs/kropp-identitet-og-seksualitet.

8.         Haga KT, Lindstøl HC. Kropp, Identitet, Seksualitet og Samliv (KISS) på timeplanen for elever med lærevansker og ulike utviklingshemminger2018. Available from: https://www.utdanningsnytt.no/debatt/2018/januar/kropp-identitet-seksualitet-og-samliv-pa-timeplanen-for-elever-med-larevansker-og-ulike-utviklingshemminger/.

9.         Newman K, Helzner J. Charter on Sexual and Reproductive Rights. International Planned Parenthood Federation (IPPF). Journal of women’s health & gender-based medicine. 1999;8(4):459–63.

10.       Oslo Universitetssykehus/Ullevål/Avdeling for nevrohabilitering, Habiliteringstjenesten i Hedmark, Vaksenhabiliteringa i Sogn og Fjordane, Voksenhabiliteringen Finnmark. Etablering av rutiner for forebygging, varsling og oppfølging ved overgrep mot mennesker med psykisk utviklingshemming Oslo2013 [141]. Available from: https://naku.no/sites/default/files/SUMO%20rapport.pdf.

11.       Eggen K, Fjeld W, Malmo S, Zachariassen P. Utviklingshemning og seksuelle overgrep – rettsvern, forebygging og oppfølging. Oslo: Helsedirektoratet & Avdeling for nevrohabilitering, Oslo universitetssykehus; 2014. Available from: https://www.bufdir.no/Global/Utviklinghemning_seksuelle_overgrep_nett.pdf.

12.       ZANZU-My body in words and images: Sensoa / BZgA; 2015 [Available from: https://www.zanzu.be/en.

13.       Foxx RM, Azrin NH. Dry pants: A rapid method of toilet training children. Behaviour Research and Therapy. 1973;11(4):435–42.

14.       Redd Barna. Nettvettsregler Oslo: Redd Barna;  [Available from: https://www.reddbarna.no/vaart-arbeid/barn-i-norge/nettvett/materiell-og-aktiviteter/aktiviteter/nettvettregler.

15.       AIM PROJECT. Assessment Intervention Moving on Manchester: AIM PROJECT; 2000 [Available from: www.aimproject.org.uk.

16.       Betanin BUP-V27. Assessment Intervention Moving-on 2 (AIM2) 2015 [Available from: https://www.rvtsvest.no/ressurs-i-arbeid-med-barn-og-unge-med-problematisk-og-skadelig-seksuell-atferd/.

17.       Jansrud, L. (Programleder). (2015, 20. februar). Episode 1: Hvordan starter puberteten? Newton – pubertet [TV-program]. Hentet fra https://tv.nrk.no/serie/newton-pubertet/sesong/1/episode/1/avspiller

18.       Sex som funker https://ungefunksjonshemmede.no/ressurser/publikasjoner/seksualitet/sex-funker-unges-erfaringer-seksualitet-funksjonsevne-2018/

6. Sexual abuse

Photo: J. Rygh 

The purpose of this module is to provide information about risks and signs of sexual abuse as well as how you discover and report it. Topics you can read about in this chapter are:

• Some explanations and consequences
• Types of abuse
• Occurrence
• How to discover and report sexual abuse
• Victims and long-lasting harm
• ‘Predators’ with and without intellectual disabilities 

6.1. Some explanations and consequences

Photo: G. H. Lunde

It seems that lack of or insufficient relative competence and poor ability to create consistent intimate relationships can be one contributing factor in the development of abusive behaviour. Such relational problems may originate in low education and lack of understanding of social rules. Other reasons may be maladministration or the fact that the person has been subject to physical/sexual abuse. Another reason may be deprivation caused by a lack of competence to handle your own emotional life. Furthermore, cultural attitudes play a role through learning and development of sexual scriptures and attitudes to violence as problem or conflict resolution. For example, this can take the form of problematic attitudes towards sex with children.  

It seems that ideas about male/female sexuality and heterosexual interaction also play a role. This happens through creating gender expectations for boys’ and girls’ sexual roles and uncertainty about legitimate and illegitimate power in heterosexual relationships. 

Violence myths and stereotypical perceptions of what is considered appropriate relationships between the sexes can enhance such a tendency. Lack of social control in this field can provide a basis for sexual abuse to occur among young people (1). 

Sexual offence is a legal term used to define infringements involving sexual activity, sexual act and sexually offensive conduct. Definition of behaviours considered to be a sexual offence and their legal consequences vary, and thus not necessarily the same in all countries. 

When ruling on offence penalty, the level of physical and psychological harm infringed on the victim is usually considered as an important factor, for example, the severity and long-term consequences of physical injuries and the psychological implications of the perpetrators role on the victim’s life (2). 

6.2. Types of sexual abuse. 

Photo: G. H. Lunde

Sexually offensive conduct may take the form of actions and words directed to or performed in the presence of someone (e.g., showing off genitalia to an unsuspecting person or verbal abuse). 

A sexual act involves behaviours such as the touching of genitalia and breasts, under or over clothing and/or to lead children to perform sexually related actions. Such unacceptable behaviours are subject to penalty when it happens in the public domain, directed to or in the presence of a non-consenting person. For instance, in Norwegian law oral and anal sex or simply inserting an object into someone’s genitalia are considered as intercourse. Other acts, such as masturbation, are also regarded as sexual activity and is penalised accordingly.  

People with a mild degree of ID have become more and more apt at using chat rooms and similar services on the internet and using text and picture messages on smartphones. Such activities make them more vulnerable to abuse, especially if they make appointments to meet with new ‘friends’ (3). For the individual with ID, such encounters can be the source of a number of good and positive experiences. It can lead to the person feeling attractive and sought after.

We need to be aware that person with ID can be uncritical in how they present themselves in digital media. Sometimes they cannot see or understand the consequences of their own actions. Sometimes they are not able to see the warning signs in a potentially abusive situation (4, 5). For parents and other helpers, it can be difficult to direct a good dialogue about rules for use of the internet. It is necessary to offer good guidance and show interest in order to have a certain overview of the situation.

Child grooming with the objective of establishing sexual interaction is also penalized as a sexual offence. It involves befriending and establishing an emotional bond with a child or family to facilitate sexual abuse, in person or via the internet. It has caused a number of countries to introduce legal measures to reduce grooming-acts. Planning to meet minors with the intent to commit sexual activity is illegal in European countries.  

Not everybody understands the limits of informed consent, therefore it is extremely important for parents to treat this subject with their young ones with care (2, 3, 5). 

Some PWID may behave in a sexual manner without them being aware of it. This makes it particularly important for adults to guide the person and set boundaries for them so that none of the parties is sexually offended (6).

Persons with disabilities are also vulnerable because most of them need assistance of private care from others. They often depend on other people and feel powerless, especially in care environment that do not follow international guidelines on self-determination and co-determination. To learn more see also the Human Rights module.

ACTIVITIES:

• Discuss with your child/sibling/client about good sexual behaviour 
• Watch this video together with your child/sibling/client and talk about the importance of other persons consent (7): Cycling Through Consent
• Find out what internet pages your child/sibling/client may have access to and if they have access to internet pages that are illegal in your country
• Find out what laws in your country describe sexual abuse and what consequences there are to breaking the law.
• Discuss with your child about how to protect themselves and the importance of telling you about things they wonder about or situations they feel afraid of. 
  

•                  Find out what internet pages your child/sibling/client may have access to, do they have access to internet pages that is illegal in your country?

•                  Find out what laws in your country that describes sexual abuse and what consequences there are to break the law.

•                  Talk with your child about how to protect themselves and the importance of telling you about things they wonder about or situations they feel afraid. 

6.3. Occurrence

Photo: G. H. Lunde

6.4. How to discover and report sexual abuse

Photo: G.H.Lunde

Example: Why do not children talk about sexual abuse

If you report your concerns as a parent, you may help the child get the right attention and help. Everyone has a moral responsibility to report abuse, but legal responsibility is also present if you are a public employee/civil servant. You may discuss your concern anonymously with a professional or a lawyer, before reporting it to the police. All public employees/civil servants and a number of other professionals are obliged to comply with the duty of confidentiality. Regardless if the individual works in the public domain or for a private service, they also have a duty to report to child protection services if there is a reason to believe that:

• a child is abused at home or elsewhere

• there are other kinds of serious neglect of welfare issues

• when a child shows serious and long-lasting behavioural difficulties

Example: Sexual abuse of a woman in a group home, by Doctor and neurologist Roy Nystad. (Video from online study Seksuell helse og seksualitetsundervisning Oslo Metropolitan UniversityVUNDS6100)

If you send a letter of concern, you may give information as to what constitutes the reason for the letter: (observations, conversations with the child, specific events, or other); what you or others have done in the case; contact with school and so on. Write down your own observations in an objective manner, without discussing what you heard or saw. Be as objective as possible.

In addition to sending a letter of concern based on details given by the child/youth/adult with ID, you need to be a safe and comforting adult to the person. There are many ways for a person to deal with abuse of your private space. Listen to the victim, because they may give you clues on survival strategies you may use to support them. Be available for questions, direct the person to the place they may ask for more help at. A high number of organisations provide help to victims. Countries may organize these services in different ways. For instance, Norway have a regional service named Public Children's Houses (translated from Norwegian ‘Statens barnehus’). In these centres, there are interdisciplinary teams ready to help victims who wish to report offences to the police.

Photo: G.H.Lunde

6.5. Victims and long-lasting harm

Photo: G. H. Lunde

It varies how a victim is harmed and reacts to abuse. Several different factors play a role, such as when and where abuse happened, who committed the abuse, how often, for how long and in what settings. Some people are more robust and others more vulnerable. 

There is a lack of research on how PWID react on sexual abuse (15). There is also insufficient research on what kind of treatment and follow-up different PWID need. We do not currently know what is best for PWID, but the main goal is to help victims to have a good life and healthy sexual relations (15). Cognitive behavioural therapy and psyho-education can be beneficial to people with ID (15). There are few sources of best-practice in literature (3, 4, 15, 16). Preventive measures must be adapted to the person concerned, and the reasons for the action.

Video: Abuse of people with ID by pedagogy and sexologist Wenche Fjeld   (Video from online study Seksuell helse og seksualitetsundervisning Oslo Metropolitan UniversityVUNDS6100)

People, who are victims of sexual abuse can behave differently from before. Some changes can be short-lived, others can be long-lasting.  There is a huge variation in expression or ways in which someone who is violated will process harm of their personal space and react on it. Sometimes the victim search for a more human contact or search for isolation. It may happen that they become more promiscuous or withdraw from close contact with others. Some may find it difficult to concentrate.  Others will change behaviour and become more hyperactive, or more passive. Some develop aggressive traits, other become more self-destructive. Some will smile all the time, while others are always sad when interacting with other humans (13, 16). 

A reaction caused by experiencing trauma may decrease over time. However, for some, they can be permanent.  

Immediately after the abuse, symptoms of post-traumatic stress syndrome (PTSS) may arise. PTSS has four main elements: the resurrection of the trauma (shaped as intrusive memories, pictures, flashbacks); avoidance (trying to avoid everything that reminds them of the trauma); numbness and depression; hyperactivity (irritability, explosive anger, being alert all the time, concentration difficulty, difficulty in sleeping) (15).

Sexual abuse may have serious consequences for PWID. Some develop PTSS, others may need higher doses of medicine after the abuse (15). Three months after the incident, half of the victims will have the same symptoms. Those with permanent symptoms need therapy. About 20-44% of children abused have no symptoms or adaptation difficulties in adulthood. It is a complex issue where the harm done due to abuse depends on several factors.  

Harm after long-term abuse depends on many factors, such as (15): 

                □ Age at time of abuse

                □ The extent of time the abuse took place

                □ Earlier experiences

                □ General family relationships

                □ Who is the abuser, how many abusers

                □ Use of violence/ threats

                □ The nature of the abuse

                □ The scope of help and support in connection with the disclosure

Common signs of long-term harm (15): 

                □ Strong sense of guilt and shame

                □ Negative self-image

                □ Fail to trust others

                □ Isolation

                □ Sexual problems

                □ Feeling like a pervert

                □ Afraid of losing your mind

                □ Strong need for control

                □ Problems to relate to your own gender

                □ Pains and aches 

                □ Psychosomatic symptoms

                □ Anxiety (phobia, breathing difficulty, nausea, fear of GPs/ dentist)

                □ Avoiding to be close to others

                □ Self-harming

                □ Depression

                □ Problems with food/ eating disorders

                □ Hallucinations

                □ Sleeping disorders

                □ Feelings of being dirty, nasty, broken

                □ Trivialising abuse

                □ Trouble defining your own limits 

                □ Self-destructive behaviour

                □ Suicidal tendencies

                □ Wishing to disappear

                □ A tendency to become a victim again

                □ Development of abusive and aggressive, conflict-prone behavioural pattern

                □ Posttraumatic stress syndrome (PTSS)

                □ Dissociative disorder

ACTIVITIES:

• Look at the list of common signs/behaviour after long-term harm and compare these signs to behaviour of PWID you know… Do you find some signs you think may be interpreted as part of the persons ID?*
• Discuss with colleagues/cooperation partners about your discovery* and find out what you can do to avoid wrong interpretation of signs on abuse.
• Consider what you can do to help your child/ a person with ID to feel fine after an abuse… see yourself in cooperation with other professionals that also provide support/treatments.

6.6. ‘Predators’ with or without, intellectual disabilities

Sexuality and sexual abuse are often not talked about. If sexual abuse is committed by a PWID the act may be kept in secret (2, 15).

Suspicion of a sexual assault is often ignored or overlooked (15). The victim and 'predator' are often not confronted, thus none of them receive help.

It is impossible to look at someone and say whether that person has committed or will commit an act of sexual abuse. One reason for an abuse to remain undetected is probably the difficulty to describe the ‘typical abuser’. Abusers can be found in all groups of the society and can have a social function equal to others (2, 17). 

Abuse also happens between persons with intellectual disabilities. An abuser with an ID who has difficulty understanding social rules should be treated in a different way from a 15-year-old boy who is masturbating in front of children. Knowledge is important for preventing difficult situations and to facilitate good sexual functions and relations. In order to prevent people from committing new assaults, it is important to see the individual and facilitate individual measures (17). 

There is no reason to describe abusers as monsters verbally. This often reduce the chance for the abuser to talk about what they have done. The motives of individuals can vary from a longing for closeness as well as comforting themselves, to wanting control of another person with acts of violence and sadism (2).

Some PWID abuse siblings sexually. In order to help prevent abuse from happening, we need to be able to talk to the abuser. We need to stop the tendency to violate the limits of other people’s personal space. We need to ask for help and report the case to the authorities (2). The predator’s admonitions, threats or violent behaviour can silence the child. This is also true for feelings of guilt or shame or the fear of what might happen to the abuser or the person”.

ACTIVITIES:

• Discuss with your child/sibling/client about strategies to prevent them from meeting sexual offenders
• Use your fantasy and think of a conversation with a sexual offender. What would you tell them, how would you explain the harm he had done?
• Discuss with your child/sibling/client about the personal strength each PWID has in order to avoid sexual offenders and how they can take care of themselves at hard times
  

6.7. References topic 6

1.         Barne-/ungdoms- og familiedirektoratet. Vold og overgrep mot barn og unge med funksjonsnedsettelser Tønsberg: Barne-, ungdoms,- og familiedirektoratet; 2018 [Available from: https://www.bufdir.no/Nedsatt_funksjonsevne/Vern_mot_overgrep/Vold_og_overgrep_mot_barn_og_unge_med_funksjonsnedsettelser/.

2.         Barstad B. Ingen hemmelighet. Available from: http://www.samordningsradet.no/ingenhemmeligheter1.cfm.

3.         TV-NRK. Kroppen min eier jeg Norway: NRK; 2018 [Norsk animasjonsserie for barn om grenser og seksuelle overgrep. (1:4) Kroppen er din. Mange barn tror voksne kan bestemme alt, at de kan gjøre hva de vil med barns kropp. Det er ikke riktig. For voksne er det forbudt å leke tissen-leker med barn. Men det finnes voksne som vil gjøre nettopp det. Hva kan barn gjøre hvis de treffer en sånn voksen?]. Available from: https://tv.nrk.no/serie/overgrep/sesong/2/episode/2.

4.         Søftestad S, Killén K. Grunnbok i arbeid med seksuelle overgrep mot barn Oslo: Universitetsforlaget; 2018.

5.         Dyb G, Glad KA, Øverlien C. Forebygging av fysiske og seksuelle overgrep mot barn – en kunnskapsoversikt Oslo: Nasjonalt kunnskapssenter om vold og traumatisk stress.; 2009 [

6.         Nordeman M. Utvecklingsstörning och sexualitet : sexuella behov och uttrycksformer. Stockholm: Carlsson; 1999.

7.         University W. Cycling Through Consent. Communications and Public Affairs (MH); 2016. p. 3.45.

8.         Berggrav S, Michelsen L. Den som er med på leken-ungdoms oppfatninger om voldtekt, kjønnsroller og samtykke. Oslo: Pedd Barna; 2015.

9.         Kripos, etterforskningsavdeling T, Voldtektsseksjonen. Voldtekssituasjonen i norge 2015. Oslo: Hustrykkeriet, Kripos; 2016. Available from: https://www.politiet.no/globalassets/04-aktuelt-tall-og-fakta/voldtekt-og-seksuallovbrudd/voldtektssituasjonen-i-norge-2015.pdf.

10.       Birkhaug P, Mæhle M, Nielsen GH, Ingnes EK, Kleive H, Solberg Ø. Unge overgripere ; en kartleggingsundersøkelse i Hordaland. Tidsskrift for Norsk psykologforening. 2005;42(11):987–93.

11.       Oslo Universitetssykehus/Ullevål/Avdeling for nevrohabilitering, Habiliteringstjenesten i Hedmark, Vaksenhabiliteringa i Sogn og Fjordane, Voksenhabiliteringen Finnmark. Etablering av rutiner for forebygging, varsling og oppfølging ved overgrep mot mennesker med psykisk utviklingshemming Oslo2013 [141]. Available from: https://naku.no/sites/default/files/SUMO%20rapport.pdf.

12.       Kripos P. Seksuelle overgrep mot barn under 14 år. Oslo: Hustrykkeriet, Kripos; 2016. Available from: https://www.politiet.no/globalassets/04-aktuelt-tall-og-fakta/voldtekt-og-seksuallovbrudd/seksuelle-overgrep-mot-barn-under-14-ar_web.pdf.

13.       Jensen M, Garbo E, Kleive H, Grov Ø, Hysing M. Gutter i Norge med skadelig seksuell atferd. Tidsskrift for Norsk psykologforening. 2016;53(5):366–75.

14.       Eggen K, Fjeld W, Malmo S, Zachariassen P. Utviklingshemning og seksuelle overgrep – rettsvern, forebygging og oppfølging. Oslo: Helsedirektoratet & Avdeling for nevrohabilitering, Oslo universitetssykehus; 2014. Available from: https://www.bufdir.no/Global/Utviklinghemning_seksuelle_overgrep_nett.pdf.

15.       Fjeld W. Oppfølging og behandling av utviklingshemmede etter seksuelle  overgrep. En kvalitativ studie basert på litteratur og eliteintervju. Malmö: Malmö högskola Hälsa och samhälle; 2013.

16.       Askeland IR, Jensen M, Moen LH. Behandlingstilbudet til barn og unge med problematisk eller skadelig atferd : kunnskap og erfaringer fra de nordiske landene og Storbritannia, forslag til en landsdekkende struktur. Nasjonalt kunnskapssenter om vold og traumatisk stress. 2017;1(2017).

17.       Vildalen S, Langfeldt T. Seksualitetens betydning for utvikling og relasjoner : med utgangspunkt i Thore Langfeldts tenkning og arbeid. Oslo: Gyldendal akademisk; 2014.

18.        Oslo Universitetssykehus/Ullevål/Avdeling for nevrohabilitering, Habiliteringstjenesten i Hedmark, Vaksenhabiliteringa i Sogn og Fjordane, Voksenhabiliteringen Finnmark. Etablering av rutiner for forebygging, varsling og oppfølging ved overgrep mot mennesker med psykisk utviklingshemming Oslo2013 [141]. Available from: https://naku.no/sites/default/files/SUMO%20rapport.pdf.

Additional literature

Child abuse If you think it, report it Department of education [Internet]. Department of education; Available at: https://consult.education.gov.uk/child-protection-safeguarding-and-family-law/working-together-to-safeguard-children-revisions-t/
 
Safeguarding adults and children with disabilities against abuse [Internet]. 2002. Available at: https://book.coe.int/eur/en/integration-of-people-with-disabilities/2414-safeguarding-adults-and-children-with-disabilities-against-abuse.html
 

Coleman E. WAS Declaration Of Sexual Rights: Operationalization Through Standards of Care. The Journal of Sexual Medicine. 2017;14(5):e222–e222.