Late last year I spoke at a conference in Melbourne. My 20 minute presentation was on Sexuality Education for young people with an intellectual disability. I have posted my talk below.
One of the areas that HUSHeducation specialise in is providing tailor made Sexuality and Relationship education programs for Specialist Schools in Melbourne; specifically schools which cater to young people with intellectual disability.
Intellectual Disability (ID) affects around 2-3% of the population of Australia. A person with an intellectual disability may have difficulty learning and managing daily living skills because their cognitive or thought-related processing is impaired.
Young people with ID find learning new skills and new information difficult. A person is said to have an intellectual disability if, before they turn 18, they have both
- An IQ below 70 (average IQ is 100)
- Significant difficulty with daily living skills, including looking after themselves, communication and taking part in activities with others.
Known causes of intellectual disability include
- Brain injury or infection before, during or after birth
- Growth or nutrition problems
- Faulty chromosomes or genes
- Extreme prematurity
- Health problems during childhood
- Drug use during pregnancy – including excessive alcohol and/or smoking
- Environmental deprivation
- Exposure to toxins
- A range of medical disorders
About 85% of people with ID are mildly affected – the other 15% have either a moderate disability (IQ of between 35 and 50) or severe or profound intellectual disability (IQ between 20 and 35).
Included here is information about the particular sexuality education needs of young people with an ID and why it is crucial for these young people – even more than others – to have access to specialized programs. Also which topics must be covered in programs for youth with special needs, and finally, some clues (that have worked for me) for teaching/presenting programs to youth with intellectual disabilities.
Education about sex and sexuality is important for all children and teenagers. Young people with intellectual disabilities have the same range of sexual thoughts, attitudes, feelings, desires and fantasies as youth without disabilities. Most young people with an ID go through puberty at the same age as their peers and experience the same physical, emotional and hormonal changes– yet often parents and teachers believe that these youth are uninterested in, or unable to have sexual relationships, and therefore don’t need the same sexuality education opportunities as their contemporaries in mainstream schools.
In many schools sex education can be a bit ‘hit and miss’ – it can be inconsistent and squeezed into the curriculum. Many teachers feel inadequately prepared or uncomfortable with the topics to be covered. Studies consistently show that young people report that their school sex-ed was too little, too late, and too focused on the ‘biological’ side of things.
People with a disability have the same right to have a sexual relationship as any other person. For youth with ID a good, well-rounded awareness of sex and relationships is particularly important. We know that young people with ID will often have fewer opportunities to engage in age-appropriate social and sexual activities than their peers and will have less opportunity to access information and materials of a sexual nature.
I’d like to share a story from a ‘specialist school’ program I facilitated. In this instance I was presenting a parent information session about a week ahead of the start of the classroom program. All the parents and carers who attended were very positive about the upcoming program and they had lots of questions. One mum’s question particularly stood out for me. She had twin sons aged 13, one at a mainstream school and the other at the specialist school. She was very conscious of the fact that her sons were developing ‘physically’ at about the same rate. She could see that her son in standard schooling was starting to notice girls in a sexual way; he was seeking out and commenting upon images of scantily clad women, talking about having a girlfriend and enjoying going out with mixed sex groups of friends. He was very aware of his status as a sexual being, and proud of his sexual development. The mum wanted to know how she could safely and legally provide her other son with some similar opportunities to joyfully experience some of the ‘sexual awakening and feelings’ experienced by his brother. As a group these parents spoke at length about some options – from maybe buying ‘soft porn’ magazines for him, providing DVDs of movies containing nudity and sex-scenes, and leaving ‘art’ books showing naked figures and sexual activity around the house for him to look at if he wished to.
Due to decrease in ability and opportunity, young people with disabilities may not be surfing the web and viewing and sharing sexual content and images like their peers most definitely are. They may lack the privacy necessary to explore their sexuality alone and the social opportunities to express, practice and enjoy their sexuality with others of a similar age.
According to CASA (Centres Against Sexual Assault [2014 Forum]), statistics indicate that over 80% of people with intellectual disabilities have been sexually abused and 68% of women with an ID will be subjected to sexual abuse before they reach 18. Victorian police data shows that 5.9% of all sexual assault victims in 2007 had an ID.
Youth with developmental or intellectual disabilities are far more vulnerable to sexual abuse and exploitation than their peers. Some of the reasons include……
- A lack of knowledge about sexual issues
- Misinformation about sex (compounded by the inability to find and read information or connect with other reliable sources)
- Lack of intellectual ability to recognize and understand body changes and so on
- Misplaced trust in others due to increased dependence on others for assistance
- A tendency to be overly compliant, particularly young people needing a high level of support
- Lack of assertiveness training or skills
- An overprotected lifestyle and limited social contact.
At another specialist school I facilitated an 8 week program for secondary level students. Classes were broken into 11-13 year olds, 14 – 16 year olds and 16 -19 year olds. Most participating students had mild to moderate intellectual disabilities, some due to cerebral palsy, autism spectrum disorders, various genetic and chromosomal disorders such as Down syndrome and Fragile X syndrome, and also foetal alcohol syndrome. Some students had limited speech, quite a few were non-literate, a few were non-verbal and many had severe behavioural and developmental issues.
One of the senior students, I’ll call her E, was an exceptionally attractive young women with smooth blonde hair, perfect make-up and fashionable ‘tweaks’ to her uniform. In each of our 8 1 ½ hour lessons E would sit front and centre. She would nod at everything I had to say, raise her hand to answer every question I asked, and enthusiastically take part in each activity with a smile on her face. (Seemingly the perfect student – happy, compliant, eager to learn). E (for whatever reason) had a ‘low IQ’. If you asked her if she understood a concept she would nod and smile and say yes. If you asked her to reword or re-explain a concept she was very rarely able to do so. E had a boyfriend; her mother gave her a contraceptive pill every morning with her breakfast. Just like 60% to 90% of people with mild disabilities, she wanted to get married and have babies. At 18 she knew this was her last year of schooling and was anxious to enter the next stage of her life. E also couldn’t get her head around time or money, had never had a part-time job, and thought babies took about 6 weeks to grow and came out through the bottom. According to her teachers E, and a number of her classmates – and in fact a number of (mostly) girls I meet at specialist schools – had already been victims of sexual abuse and assault.
There are many common stereotypes of intellectually disabled people regarding sex:
1.They will forever remain childlike
2. They are and always will be asexual
3. They are unable to understand their sexual desires
4. They have incontrollable sex drives
5. They are potential sexual deviants, and should be denied sex education in case it ‘gives them ideas’
In most cases, such stereotypes are incorrect; yet so often I meet adults who work and interact with these young people (including case workers, classroom aids, group home supervisors, as well as parents and teachers) telling me how ‘highly sexed’ these kids are – how they are constantly being caught in compromising sexual situations. Others say things like “oh, I’ll probably take her out – she won’t understand anyway.” Or “J will probably want to leave – this sort of stuff upsets him.” “I’m worried B will get ideas and try to interact with the girls at school/home in a sexual way”. I’d like to suggest to you that the amount of ‘sexual activity’ these young people are taking part in – or not, is very much the same as their contemporaries; and perhaps it’s their inability to hide it from the adults that is their biggest difference.
The fact is that youth with intellectual disabilities need the same sexuality education as their same age peers. They may just need that information presented in a different manner. As we’ve already seen, young people with ID are more at risk of sexual abuse and exploitation; they are also at increased risk of STI’s and unplanned pregnancies as well as non-consensual sex with peers and others.
There are lots of reasons why youth with ID have a reduced ability to recognize risky sexual behaviours and to maintain sexual health and safety. For one, it can be difficult to explain the physical, emotional and social aspects of sex to these young people. It is common for them to learn at a slower pace than those without disabilities
- There may be communication issues
- Limited literacy skills
- Difficulty with abstract thinking and comprehension
- Trouble relating ideas to their own life experience
- People with intellectual disabilities can lack impulse control
- The mental age may be significantly lower than the physical age
- There may be difficulty with understanding the long term consequences of pregnancy or some sexually transmitted infections;
- And very important is the lack of privacy and autonomy for many youth with intellectual disabilities.
Important issues include access to condoms – a lot of young people with ID are unable to pop down to the shops unattended. They may not have the language or the confidence or the knowledge to request condoms from school nurses or youth health agencies. There may be a need for ongoing instruction in correct condom use. Many of these young people are supervised for a huge majority of their waking hours – privacy is rare. If a young couple find themselves in a situation where sex can take place, they may well take advantage of that without considering the consequences and often without consideration of consent, privacy or sexual health and safety.
Many parents, caregivers and doctors I’ve spoken to will ensure that the females in their care have adequate access to contraception. Indeed most of the middle and upper school young women I’ve met are using ‘set and forget’ contraception options, (also known as LARC – long acting reversible contraceptives) both to prevent an unplanned pregnancy and also to help regulate and control periods.
Of course, as we all know, hormonal contraception does not protect against Sexually Transmitted Infections; and this is where constant reinforcement of the condom message is so important.
Some parents/carers and guardians may be unaware or just don’t imagine that their son or daughter is sexually active. They may not have considered contraception for their child – or may believe that their child is incapable of, or uninterested in sex with others.
Apart from unplanned pregnancies and increased risk of STI’s other risky sexual behaviours include
- failing to give or gain consent for sexual activity
- lack of understanding of and consideration for the private aspect of any sexual activity
- being in unhealthy relationships with an uneven balance of power
- inappropriate expressions of physical affection
At one school for young adults with intellectual disabilities; one area of sexuality education which I was asked to address very specifically was the age of consent. This school had a real problem with older students coercing younger students into sexual activities through bribes, threats, treats and other means. In our sessions we investigated at length the legal as well as social requirements for age-appropriate relations.
Some years ago I met a young man with down syndrome who needed constant reminders that masturbation was a private activity; the outcome of our sexuality education classes for this chap was that masturbation was not only a private activity that should only happen in private places; but that masturbation was not to take place, even in private, at school.
While these young people remain in the school environment they have a type of safety net – surrounded by people who care for them and about them, who understand them and want only the best for them. Once young people with intellectual disabilities finish school they often find themselves bored and lonely, without work or focus, and more likely to be at risk of dangerous behaviours, legal ramifications and isolation.
The aim for most schools, parents and carers of young people with ID is to instil in these youth the knowledge necessary to express their sexuality in positive and healthy (and legal) ways.
In many main stream schools ‘sex-ed’ might be a unit of work covered in a couple of lessons or by a guest speaker spending time with a group of students. This may be adequate – especially for students who might wish to, and are able to search out further information and resources as the need arises and who have the facilities to do so.
Youth with intellectual disabilities need on-going sexuality education, involving not just a number of topics, but also a great deal of repetition and a variety of presentation methods. Important topics will include, but are absolutely not limited to
- Body part names and functions
- Protective behaviours/body safety – feelings, emotional resilience
- Private/public – body parts, behaviours, places, topics – Masturbation
- Healthy relationships – CONSENT, Sex and the law, relationship boundaries and relationship-specific behaviours,
- Sex and Reproduction – conception, pregnancy and birth, same sex attractions
- Safer Sex – contraception
- Condoms and STIs
In an ideal world, sexuality education for young people with ID would be ‘just another subject’ in an already extensive curriculum. Just like literacy or numeracy it would be a sequential, regular lesson for all of the years a child is at school. Unfortunately this is unlikely to happen for many reasons. Not all teachers are qualified or feel comfortable teaching sex-ed – nor do they have the time in their already busy time-tables. Some schools are limited by cultural and religious restrictions or budget.
Now a really quick peek into some of the things I do at each 1.5 hour session in HUSHeducation’s programs for students with intellectual disabilities. At our first meeting we will devise together a brief set of classroom rules and responsibilities. These are written down and revised at the start of every session. They might include things such as
- Hand up if you want to ask a question or make a statement.
- Listen to one another and let other people talk.
- We can laugh with each other, but not at each other
- Use correct body part names
The next thing we’ll do at the beginning of each session is revise the topics covered previously – this could be a discussion or a quick game or even a quiz (maybe involving moving to A, B, or C in various parts of the room for our multiple choice answers). Where the class are able to write I will sometimes end the session with question box. The students can write anonymous questions, place them in the box and know that I will do my best to answer these at the start of the next session. After rules, revision and questions it’s time to introduce our topic of the day – students were ‘pre-warned’ about today’s topic at the end of the previous session – some will remember, some will not. Each session will include a mix of looking and listening, games relevant to the topic and the abilities of the group – perhaps matching, sorting or sequencing cards – plus role-play, work-sheets, demonstrations, workshops, and stories. Resources are always very visual and much more explicit than I would ever use in mainstream school sex ed programs – including photos and 3D models.
As a new topic is introduced I make it very clear that this is what we’ll be learning about and this is what will happen in our session today. For example “today we are going to be talking about sexual intercourse; some people call it having sex or making love or lots of other names which we can talk about in a little while. We will be talking about how sex happens and finding out some really important rules about sex. I’ve got some pictures to show you, a story for you to listen to and then we have an activity to do. I’ll be making a list on the whiteboard as I speak. All throughout the session I will refer back to the list so the students can track where we’re up to and know what to expect next – this is really important for students on the autism spectrum in particular. Each session will end with a revision discussion. “So today we’ve been learning about sex – we learned that there are lots of words that people use for sexual intercourse, and we decided that ‘having sex’ can mean different things to different people. We spoke about the rules of sex; in particular we talked about age, privacy and consent and practiced asking for consent and giving and denying consent in our role-play activity. Next week we’re going to talk about preventing unplanned pregnancies and also some of the options available if someone becomes pregnant.” I finish with some open-ended questions which allow the class to reword new concepts and ideas and verbally revise and review the session.
At the end of every specialist school session I have my phone alarm set to play a song – to indicate that work time is over. At one school the song was Happy by Will Pharrel – every day, in every class, as the music began to play, some of the students clapped and danced and sang, others used those couple of minutes to gather their pencil cases or note-books, talk to their class teachers, line up at the door or stack the chairs and clean the whiteboard.
I’d like to finish by sharing one last quick story. This one is a story of what not to do? In one specialist school session the class and I were having one of those really successful days. Students who were often quiet were totally involved and contributing to discussion about private and public and we were all having a laugh about a flashcard I was holding. One young person (about 15 years old) who had been very quiet for most of the previous sessions had made a number of great, relevant and interesting points in our workshop that day. I was excited – as were his teachers – and without even thinking, I said “J; you’re on fire today”. Of course I meant “You’re really doing well”; but poor J immediately started looking for the fire and became quite distressed. This upset another student who started spinning and stimming which made another cry, and T start rocking in the corner. Needless to say I had to stop the lesson, calm the class and I finished that session not with our usual song and dance but with a soothing, rhyming story in an extra soft voice so everyone needed to be very quiet and still to listen and concentrate extra well.