Sex Education for Students with an Intellectual Disability: Teachers’ Experiences and Perspectives

Abstract

Background: Sex education assists students in the development of a healthy sexual identity and relationships. However, students with an intellectual disability tend to receive less holistic sex education as compared to students without a disability. In this inclusive study, we explored the perspectives of 10 high school teachers through interviews and focus groups on how students with an intellectual disability are informed about sexual relationships and prepared for their future life living with as much autonomy as possible, including living with a partner and becoming parents. Method: The interviews and focus groups were analysed using the inductive content analysis. Results: Data analysis revealed three themes: (a) sex education; (b) self-determination and self-advocacy skills; and (c) teachers’ concerns. Conclusions: Several recommendations are discussed. These include incorporating sexuality education-related goals in an Individualised Learning Plan (ILP); teachers adopting a rights-based approach and focusing on students’ self-determination, agency, and rights regarding sex education; and providing schools with necessary resources to teach sex education.

1. Introduction

According to the UN Convention on the Rights of Persons with Disabilities (United Nations 2006), people with a disability, such as adolescent students with an intellectual disability, have a right to a quality education, with the information provided in an understandable and accessible way. They also have a right to have social and sexual experiences that would contribute to life satisfaction and fulfilment (Akbas et al. 2009; United Nations 2006). Moreover, it is increasingly recognised by parents, teachers, and youths themselves that sex education is a core component of comprehensive and high-quality education, as it enables youths to develop knowledge, positive attitudes, and values to make healthy choices about their sexuality and relationships (Swango-Wilson 2011). Ultimately, a comprehensive sex education program is a universal human right for all individuals, including students with intellectual disability, and providing students with intellectual disability an accessible sex education program ensures that their rights are respected (United Nations Educational, Scientific and Cultural Organization 2018).

Despite the rights of students with intellectual disability to receive a comprehensive sex education program, they often do not, unlike students without a disability (Frank and Sandman 2019; King et al. 2018) due to stereotypes associated with people with intellectual disability. The negative stereotypes include seeing people with intellectual disability as eternal children or desexualised1 beings, incapable of living adult lives and having children (Björnsdóttir et al. 2017). On the other hand, other misconceptions and negative stereotypes include seeing people with intellectual disability as hypersexual beings who have uncontrollable sexualities, and who are a potential “danger” to the community. Parents of people with intellectual disability have been known to avoid providing information about sex to their children due to the belief that doing so would encourage sexual behaviours (Frank and Sandman 2019) and potentially lead to pregnancies. This contributes to limited opportunities to make choices in their daily lives (Wissink et al. 2015). These prevailing negative stereotypes are barriers to their autonomy and self-determined behaviour in different areas of their lives (Björnsdóttir et al. 2017).

It is especially concerning that sex education provides only limited access to information for these students and is mediated by risk-averse informants (King et al. 2018). Indeed, sex education for students with intellectual disability is typically grounded in a medical and biological view, and does not include issues such as sexual pleasure and intimacy (Turner and Crane 2016; Alexander and Gomez 2017). Furthermore, sex education curricula for this population of students often does not provide information on alternative gender, sexuality, and relationships (Löfgren-Mårtenson 2012).

The pace of instruction and method of delivery are not less important than the content of sex education for students with intellectual disability. Researchers (Corona et al. 2016; McDaniels and Fleming 2016; Finlay et al. 2015) recognised that over-reliance on discussions and verbal explanations of abstract concepts is a considerable barrier in sex education programs for students with intellectual disability. As highlighted by Rowe and Wright (2017), the use of visuals (e.g., videos) considerably aids students with an intellectual disability in sexual knowledge understanding. Visual supports and modelling are evidence-based practices for this population of students (Cannella-Malone et al. 2021; Rowe and Wright 2017; Spriggs et al. 2017). For example, research (Schaafsma et al. 2015) showed that modelling and role-playing are critical in teaching protective behaviours to students with intellectual disability. Yet, a recently published scoping review (Strnadová et al. 2021b) revealed a limited use of evidence-based practices in the delivery of sex education.

The lack of attention to the development of knowledge about sexuality, rights, and relationships in these students has likely increased the risk of harm (e.g., sexual abuse) for this population (Collings et al. 2020). Due to the minimal sex education they receive (Borawska-Charko et al. 2017), students with intellectual disability may not have knowledge of appropriate and inappropriate sexual behaviours, as well as with whom they should be intimate with (Gil-Llario et al. 2020). Sexually abused students and adults with an intellectual disability tend to be passive in their sexual relations and tend to make poor relational decisions. They also can get involved in juvenile/criminal justice systems (Byrne 2018) often due to a lack of knowledge about acceptable behaviour. Furthermore, Gil-Llario et al. (2019) found that people with intellectual disability who self-reported experiencing sexual abuse had a low quality of life and ability to identify potential situations that could lead to sexual abuse. Education and knowledge about sex are important tools for students with intellectual disability to reduce sexual abuse, support positive sexual identity, and develop decision-making abilities (Collings et al. 2020). They are also recognised as self-defence skills in enabling individuals to provide informed consent for sex (Hollomotz 2009). However, it is necessary to avoid the individual model of disability in explaining the increased risk of harm by focusing only on self-defence skills and characteristics of individuals as social factors also play a part (Hollomotz 2009). As such, risk of harm must be understood within an ecological model approach that considers the formation of these self-defence skills as resulting from the interaction between the individual’s disability and the systems in the ecological framework. These systems include the individual’s microsystem (i.e., immediate social network). The microsystem is in turn embedded within the exosystem (e.g., neighbourhood, employment) and the macrosystem (i.e., society and culture) (Hollomotz 2009). For instance, parents of students with intellectual disability may be more involved in supporting their child’s relationship with others as compared to if their child did not have intellectual disability (microsystem). Schools may also provide differentiated sex education programs to students with intellectual disability (exosystem); policies on sex education have been developed specifically for students with intellectual disability (macrosystem) to better accommodate their needs. Hollomotz (2009) importantly highlights that the high risk of sexual abuse of people with intellectual disability is socially created (p. 109), and that if we are truly committed to reducing the risk of sexual abuse, we need to move beyond “vulnerability” and rather aim to “eliminate conditions that create risk” (p. 110). Indeed, many services delivered to people with intellectual disability over their lifespan do not support self-determination development, with people being told what to do, where to do it, when and with whom. This limited focus on people’s self-determination and self-advocacy development means that services provided for this population “feed into a high experience of sexual abuse” (Gill 2010, p. 204).

1.1. Teachers’ Perspectives on Sex Education for Students with Intellectual Disability

Research studies have revealed that teachers’ attitudes and skills related to sex education may prevent them from delivering all topics included in the curriculum (de Reuters et al. 2015; Hanass-Hancock et al. 2018). For example, de Reuters et al. (2015) found that despite acknowledging that sex education was an important topic for students with intellectual disability, teachers lacked confidence in delivering sex education. Furthermore, believing that these students had limited capacity to understand sex education, teachers did not provide details related to the topic. In Frank and Sandman’s study (2019) teachers did not believe that sex programs are beneficial for students with disabilities. This was also one of the findings in a recently published scoping review (Strnadová et al. 2021b). Likewise, Aderemi (2013) and Rohleder et al. (2012) reported that teachers had minimal tools, resources, and skills to deliver an extensive and accessible sex education program for students with disabilities. Chappell et al. (2018) also revealed that teachers in their study experienced difficulties discussing same-sex relationships in school due to cultural barriers, disapproval from other teachers, and students’ uneasiness with the topic. Therefore, to ensure that sex education is implemented as it is intended to, it is crucial to seek teachers’ perspectives regarding sex education for students with an intellectual disability. This can be accomplished in different ways, including qualitative approaches (such as interviews and focus groups), as well as evaluation questionnaires.

1.2. Context of the Study

Sex education is included in the New South Wales (NSW) Education Curriculum, as part of the Personal Development, Health, and Physical Education (PDHPE). Specifically, students in Years 7–10 (Stages 4 and 5) are taught this content as part of the Health, Wellbeing, and Relationships and Health, Safe, and Active Lifestyles strands. It is important to note that students often do not receive the same education for sexuality and relationships. Some schools will deliver lessons on these topics within schools by classroom teachers and others use a range of external providers.

Students with disability, especially students with intellectual disability, often do not receive the same educational opportunities in sex education as their peers without disability. These students will often not attend the same PDHPE classes as their peers and will receive lessons using a blend of the PDHPE and Life Skills curriculum to teach these topics. It is important to note this is usually up to teacher discretion for how these topics are taught to students with disabilities.

In this inclusive research study, we aimed to investigate how high school students with an intellectual disability are informed about sexual relationships and prepared for their future life living with as much autonomy as possible, including living with a partner and becoming parents. The research questions guiding this study were:

(1)

What are teachers’ experiences with and perceptions of sex education for students with an intellectual disability?

(2)

What are the challenges in developing autonomy concerning sex and relationship knowledge and skills in students with an intellectual disability?

2. Research Methodology

2.1. Research Process

This study was approved and supported by the university [This study was approved and supported by the Human Ethics Committee of the University of New South Wales Sydney]. This article reports on one part of the study, which focused on teachers’ perspectives. The recruitment criteria were that participants in this study need to be high school teachers teaching sex education. The authors contacted mainstream schools in New South Wales to recruit the participants. The schools advertised the possible opportunity to take part in this study by personal communication with teachers. When the authors met with potential participants, they introduced the aims of the study to them and explained the participant consent form. Depending on participants’ preferences, interviews or focus groups were conducted either by an academic researcher or by a dyad of researchers (one academic researcher and one co-researcher).

2.2. Research Design

This was an inclusive research study (Walmsley and Johnson 2003; Walmsley et al. 2018), in which a collaborative approach to inclusive research was used; i.e., a co-researcher with intellectual disability (J.L.) was a member of the research team and co-authored this article. This research study was co-designed by the first and second author, based on their previous joint research with parents who have an intellectual disability (Collings et al. 2020; Strnadová et al. 2019b), Strnadová et al.’s (2019a) research, and the authors’ experience in supporting people with intellectual disability over the life span. All of these experiences pointed out insufficient sex education for students with an intellectual disability. The first and second author conducted most of the interviews together. Using her experiences of being a parent, the second author also provided some suggestions to teachers. An example of such an interaction can be seen below:

Maddison: “And some kids will say, even if they’re lower level, ‘I want to be a mummy!’ That kind of thing. The maternal instinct comes out. But I think a mummy to them is having a doll. (…) They don’t really have a realistic view on what parenthood is!”

The second author: “I know when my last daughter went to school, if she wanted to deal with sexuality and being a parent, she was given a doll to take home. Do you do anything like that?”

Maddison: “No, we don’t. We’ve never come across that situation where someone seems to intent on having it, and I know there are dolls like that available where there’s time to wake up, and nappy change, and be fed and cry, kind of thing. (…) But in speaking of that, I’m glad you’ve actually brought that up, because I do have a student who (…) wants to be a mother, and I do know she’s sexually active. I’m really glad you brought that up, because that’s just prompted something that mightn’t be a bad idea for her, so thank you! Where do I get it from?”

The interview protocol (available upon contacting the first author) was based on (a) an extensive literature review about sex education for students with an intellectual disability and (b) the second author’s experiences as a mother with an intellectual disability, a peer supporter for other people with an intellectual disability, and an employee of an organisation that advocates for people with an intellectual disability.

As highlighted by Strnadová and Walmsley (Strnadová and Walmsley 2018), there needs to be clarity about the process of co-authoring an inclusive research article, otherwise there is a risk of tokenism. In this manuscript, the first two authors (i.e., an academic researcher and a co-researcher with an intellectual disability) wrote the Findings section together, over a series of meeting days. They went through the data analysis, discussed the main arguments, and formulated sentences together, with the academic researcher typing up the text. They also created a list (using bullet point) of topics to be addressed in the Discussion section and in answering the research questions guiding this study. Then, the first and third author wrote the Introduction, Method, Discussion, and Conclusions sections.

2.3. Participants

A total of ten teachers participated in the study. This sample size is considered sufficient in qualitative inquiry as it does not seek to generalise the findings, but to understand, interpret, as well as explain a highly contextualised phenomena (Kamberelis and Dimitriadis 2005). Six teachers were from a mainstream high school and four were from a special school. Seven of them were female and the rest were male. The age of teachers ranged from 26 to 62 years, with an average age of 38.3 years. Their teaching experience ranged from 4 to 45 years, with an average of 14.9 years. Four teachers had a bachelor’s degree in Education or Occupational Therapy, four teachers had a master’s degree in Special and/or Inclusive Education or in Education, and two teachers had a (graduate) diploma in Special Education. Five teachers had no training or professional development in teaching sex education, four teachers had one-off or some training on this topic, and one teacher was trained in PDHPE. For more details about the participating teachers, please see

Table 1. Teachers’ demographics.

Pseudonym	Age	Gender	Teaching Experience	Qualifications	Type of School	Training in Sex Education
Summer	48	Female	25 years	Bachelor’s in Education	Mainstream school	Some professional development
Maddison	62	Female	45 years	Diploma in Special Education	Mainstream school	Some professional development; Family Planning NSW training
William	28	Male	6 years	Master’s in Education	Mainstream school	No training in sex education
Audrey	37	Female	10 years	Master’s in Special Education	Special school	One professional development event ran by school
Hannah	26	Female	4 years	Bachelor’s in Occupational Therapy	Special school	One professional development event ran by school
Mila	29	Female	7 years	Bachelor’s in Occupational Therapy	Special school	No training in sex education
Jasmine	28	Female	1 year	Bachelor’s in Education	Special school	No training in sex education
Willow	28	Female	6 years	Master’s in Special and Inclusive Education	Mainstream school	No training in sex education
Jack	52	Male	30 years	Graduate Diploma in Special Education	Mainstream school	No training in sex education
Samuel	45	Male	15 years	Master’s in Inclusive Education	Mainstream school	Training in Physical Development, Health, and Physical Education (PHPDE)

. The conducted interviews and a focus group had an average length of 38:27 min (ranging from 19:24 to 54:35 min).

2.4. Data Analysis

After the interviews and/or focus groups were audio-recorded with the participants’ permission and transcribed verbatim, the authors analysed the data using inductive content analysis (Elo and Kyngäs 2008), as there is a lack of knowledge about sex education for female students with an intellectual disability. There have been, however, some studies conducted with a focus on the topic of sex education for women labelled/with intellectual disability (Eastgate et al. 2011; Björnsdóttir et al. 2017).

The first author and the second author conducted open coding, and in the process of abstraction, grouped the categories into themes. All three authors discussed the derived themes, allowing for investigator triangulation and peer checking (Brantlinger et al. 2005). The authors’ diverse disciplinary and lived experience backgrounds (as the authors were from the fields of special education and disability studies and one author had lived experiences of being a person with an intellectual disability) allowed for a more in-depth understanding of the data. All disagreements between the authors were resolved, which enhanced the authors’ self-questioning and self-reflexivity (Archibald 2016). Pseudonyms are used in this article to protect the privacy of the participants.

3. Findings

Three main themes arose from data analysis of teachers’ interviews and focus groups: (a) sex education, (b) self-determination and self-advocacy skills, and (c) teachers’ concerns.

3.1. Sex Education

The sex education theme consisted of two categories: (i) sex education at school—content and resources; and (ii) adjustments and teaching approaches. In terms of what students with an intellectual disability were taught in sex education, the most common topics included (in the order of frequency, from highest to lowest) female and male body parts, personal and internet safety, social media and cyberbullying, masturbation, protective behaviours, safe sex and protection, emotions, boundaries, consent, safe and unsafe behaviours, family planning, hygiene, puberty, menstruation, public and private places, relationships, homosexuality, sexual abuse and assault, saying no, appropriate touching, sexually transmitted diseases (STD), drugs and alcohol, abuse of power, and trusting people. Some teachers find it challenging to teach their students about relationships. Maddison, for example, commented: “The challenge is that they really understand the implications of a relationship. (…) That comes down to their ability to comprehend such issues.” Willow described her approach to teaching students with an intellectual disability about relationships:

When we talk about relationships as well with students, we talk about different positive relationships, and what they look like, and different strategies in term of continuously having those positive strategies in place, and then negative relationships and what they look like, and what to do in those situations. … we’re looking at how that effects the students’ mental health, or if we talk about a relationship that’s really negative and you need support besides friends and family, or teachers, what other services are available and who you could go to to seek help for yourself or a friend. (…) We recently even talked about things like abuse in terms of sexual abuse and what that looks like...

However, one of the teachers mentioned that she does not teach her students with an intellectual disability about domestic violence and similar topics, because it would be “too disturbing” for them. Some teachers also mentioned topics that are not taught about in their schools, which mostly included (i) homosexuality/any identity other than heterosexuality, and (ii) masturbation. This might be both due to the school and parents’ preferences. For example, Maddison shared an example of a parental reaction to making masturbation a part of sex education at schools: “Oh, my child doesn’t do that! He’s not like that!’ Well, all children are like that, because we are all human, and we do.”

Some teachers also discussed their preferences in regard to delivering sex education in mixed classes as opposed to girls-only groups. There was a considerable diversity in opinions. Maddison, for example, preferred mixed classes:

At the moment, we’ve been teaching them together. There was a time when we had a boys’ group and a girls’ group, and I think we’ve sort of moved on from that, for a couple of reasons. One, because we sort of felt that girls should know what boys are feeling, and boys should know what girls are feeling.

Teachers also discussed the adjustments they make for students with an intellectual disability, and about teaching approaches they use. Many teachers highlighted the importance of using visuals (e.g., videos, YouTube clips, mind maps), role plays, discussions, and content adjustment (e.g., breaking things down, paraphrase). Some highlighted the importance of age-appropriate learning and formative assessments in lieu of formal assessments.

I don’t do a lot of formal assessments. I find that with our formal assessments, not only do they tend to increase anxiety in our students, but they tend to just be a test of memory, a lot of the time, and our kids really struggle with their working memory, so I do a lot of what we call “formative assessments”, so they’re in-class assessment tasks… (…) I still have to do formal assessments because our students are on the mainstream curriculum, but I do one formal assessment every two terms, instead of doing one or two a term (…) … most of my teaching is basically discussion-based, doing KWL charts, looking at things like—I do exit slips quite a bit, so I might do three stars and a wish, what are the two things we learned about, what’s one thing you’d like to learn about?

(Willow)

Four teachers from a special school for students with moderate and severe levels of intellectual disability highlighted the importance of incorporating safe and unsafe words in teachers’ vocabulary.

3.2. Self-Determination and Self-Advocacy Skills

Self-determination and self-advocacy skills theme consisted of two categories: (i) Individualised Learning Plan (ILP) meetings, and (ii) speaking up. Teachers confirmed that each student has one or two ILP meetings per year. Only three teachers stated that students with an intellectual disability attend their ILP meetings. Furthermore, only two teachers mentioned that parents receive a copy of an ILP. None of them would say that students receive their copy. In terms of sex education, four teachers confirmed that ILP meetings also include sexuality-related issues.

Three teachers highlighted the importance of self-advocacy, autonomy, and speaking up for oneself for students with an intellectual disability. Willow emphasised why teaching self-advocacy needs to be a part of education at school as early as possible:

I try and encourage a lot of autonomy and self-advocacy, because I think when it comes, we need to be able to prepare our kids to talk about what they need, even from Year 7, because once they get to Year 12 they’ll have all those skills memorised, so it’ll be something that will just be automatic to them, whereas if we try and teach that in the older years, they haven’t had as much practice with it, so I find that it won’t be as automatic.

Two teachers described how they support their students in learning about their disability, knowing their rights and supports, and talking to others about their disability. One teacher highlighted that some students cannot speak up and protect themselves.

3.3. Teachers’ Concerns

Experiences with students and parents was a substantial theme, which consisted of the following categories: (i) abuse and violence, (ii) masturbation, (iii) collaboration with parents, (iv) inappropriate behaviours, and (v) students and sexuality.

3.3.1. Abuse and Violence

Six teachers had experiences with their students with an intellectual disability being sexually abused, which was often committed by a relative or a family friend. For example, Willow shared:

One was with a dad, so the student was sort of in a relationship with the dad, and I had to—we had to do a child wellbeing referral, and go to FACS [Family and Community Services] and have that investigation underway, so not only did I have to support her but I had to support her friends who had disclosed to me as well. And we’d spoken about, you know, what they can do to support their friend. And then also, I think because the girl didn’t understand why we were making such a big deal of it. Didn’t understand that there was that abuse of power and that that shouldn’t be happening to her.

Seeing her students being sexually abused led Maddison to develop an awareness program:

… two of our students were sexually abused, and both of the notifications the children made to me, so I was involved with DoCS [Department of Community Services, now referred to as FACS], … and from that, I wanted to find out what can I do to—number one, for counselling for these students, and number two, for resources. I sort of made my own program at the time based on—the Circles program was part of it, but I modified that for the students. … the most important thing we do is about protective behaviours. Rather than about sex, how to protect yourself. We think that’s a priority. The kids can protect themselves.

Teachers from a special school for students with complex needs (i.e., severe intellectual disability and autism) developed their own sex education program. This was due to a lack of resources accessible for students with high support needs:

And I guess it took us about two and a half years. It runs from early learning—so, the four and five-year-olds, all the way to secondary, and it’s sort of a skills-based, tiered program, so you start in Early Learning, really basic skills, like identification of who you are, and labelling body parts, and all that sort of stuff, and it builds as you get older, depending on students’ skill levels. … we just sort of split it into three areas, which was Emotions, so that involves not, like, only identifying emotions, but self-regulating, when you’re experiencing intense emotions, and My Body, so that’s about identification and Rules—touching, not touching, exposing yourself, etcetera. And also menstruation was in My Body as well, so we did preparing girls for their periods, and protective behaviours, which is a program we run called Circles, which is like your circles of people in your life. So, me, my family, my friends, and what different rules, I guess, and how you can interact with your family versus strangers. Trying to teach boundaries, and trying to teach consent, which is really hard to teach.

Diverse demands on teachers working in special schools were evident in their focus on students with high support needs. This was also acknowledged by some of the teachers from mainstream schools. For example, Willow commented:

I worked at an SSP [special school] last year as part of my practicum. I think I would really struggle in unpacking the curriculum for students of that comprehension level, … (…)… because I was fairly new to non-verbal modes of communication, it was really difficult to gauge the level of understanding and knowledge. I think I’m a bit more equipped to do that now in terms of understanding different forms of communication, and how you utilise those, but I think that would be my biggest struggle: understanding how to unpack that even further, and making sure the communication stuff is then catered for as well.

One teacher also described how the sexual abuse situation of one of her Year 9 female students challenged her in terms of believing whether what the student was saying is true: “It was hard because I didn’t know whether she was telling me the truth. Because of her intellectual disability, I didn’t know, whether it was truly what was happening. Then she was describing the act, and things like that, so then it was a duty of care responsibility as a teacher that I had to report it.”

One teacher also questioned school processes when sexual abuse of a student is found. She was convinced that teachers of that student need to be aware of the sexual abuse:

Sometimes confidentiality’s an issue as well. (…) They say that if you know of a child being sexually abused, you’re not to pass that on to your colleagues. I really disagree with that, to some extent. I certainly don’t think it should be in the weekly bulletin, but I do think that if a child is going to your class and you don’t know the child’s being abused, I think you need to know so you know what to look out for. So I think there needs to be some passing on of information. Not gossip, not staffroom talk, but some professional dialogue…

Some teachers also mentioned incidents of domestic violence in families of their students and cyberbullying. Willow suggested:

I have had another kid who had disclosed to me that somebody on Facebook had met up with them. He was about thirty years old, she was thirteen. She went to his house and they’d had sex, and when we spoke about it she said to me—and she came from a different—it was a very, very low socioeconomic—a lot of drug and alcohol abuse within the family as well—so, came from an environment where there wasn’t a lot of supervision and wasn’t a lot of care in terms of where the child was, because when we called the next day and said, “Your child’s not at school, and her friend’s told us she met up with someone.” “Oh, do you think I should call the police?” “Yes!” “I thought I had to wait until at least 48 h.” “No, you don’t!” So, eventually, it got to the point where I had to phone the police myself because the mum still hadn’t by about one o’clock. She was found at about three, but denied to the detectives that anything had happened, and spoke to me about “Well, he loves me, and he cares for me.” I think it was seeking that emotional affection that she wasn’t getting at home. And I referred her to the counsellor. Did disclose what had been said, but obviously, it wasn’t taken further by the police because she kept denying to them, even though they had my statement, and then I just said to her, “I really hope for your sake that you’re right,” because nothing else will work with her. I just said, “I really hope you’re right, but, sweetheart, someone else of this age only wants one thing from someone your age, and really hope I’m wrong”. And two weeks later she came and she was in hysterics and shattered and… I think that was a big learning experience for her. Not a very positive one …

Another teacher commented on a critical lack of available counselling for students who have been abused:

…our special kids, fall through the cracks, which is something that needs to be addressed. (…) certainly by organisations that do counselling. (…) Our kids have a massive proportion of kids that are being abused. So when I ring, don’t tell me you’re sorry you can’t help me!

3.3.2. Masturbation

Five teachers talked about masturbation being an issue for their students. The most common problems were students masturbating in public places, and students injuring themselves while trying to masturbate.

Many teachers also spoke of parents refusing to allow their child to learn about masturbation is sex education, as demonstrated in the following teacher’s experience: “We’ve had ‘absolutely no’. Speaking to the parents, that this inability to masturbate is becoming actually a huge issue in terms of aggression, in terms of self-regulation, so we’ve had several conversations over several, several years, maybe four years now, and they’re just flat-out refusing.”

William admitted that masturbation is a topic he avoids in sex education: “I’ve never really taught masturbation and that sort of stuff. Unless I’ve got a kid in my class that’s doing it in public, I think that’s…you seem to know what you’re doing. I’ll leave it to you.”

3.3.3. Collaboration with Parents

In teachers’ experiences, some parents found it difficult to talk about sexuality with their children, which might be also grounded in their religion/culture. Teachers felt that it is important not only to prepare students for sex education but also their parents, who have to give consent on topics that will be covered within sex education at school.

One of the teachers from the special school shared their approach to collaborating with parents: “… make it very friendly, parent-friendly, and that’s why we’re starting really low in early learning, that they don’t even feel it’s part of their sexual education. Through primary school I can see, especially for the parents who have kids who develop very quickly, they often see the need for us to address issues very early, but then secondary, it’s really an eye-opener, and I can imagine college, too, when things start happening, behaviours changing because of the hormones. Emotional regulation and everything else that happens with their body. So, the parents are definitely going through the stages…”

3.3.4. Inappropriate Behaviours

Two teachers expressed concern that some students with an intellectual disability can be more violent when learning about sex education. One of the teachers shared the dilemma of how to teach sex education curriculum, while not encouraging inappropriate behaviour.

Teachers also shared their experiences with an outcome of students having limited sex education: “And it becomes a real issue for over 18’s who are now adults in the community. We’ve had several incidents of clients grabbing women’s breasts on the train, and then getting charges pressed against them. So for us, we can see the backflow of all those issues if they’re not dealt with earlier.”

3.3.5. Students and Sex Education

In terms of students’ sexuality, one teacher talked about having her students with an intellectual disability in relationships and how important it is to support them and educate them. William even stated that students with an intellectual disability take sex education more seriously than students without disability: “I’ve taught the same thing in mainstream before, and like any kid, they’re generally pretty reluctant and they laugh for a while, but… I actually think, to be honest, the kids with intellectual disability tend to take it more seriously than the kids in mainstream…”

Samuel was concerned that some students cannot always disclose their sexual identity to their parents: “I know … one child here who may be gay, (…) but … their parent would be horrified. (…) So the boy is going to go through a hard time.”

When it comes to sex education for students with a more severe intellectual disability, teachers found it challenging to teach sex education to non-verbal students. They shared some key rules they have around teaching proper vocabulary to students: “... the core vocabulary is really important: because the language that they learn when they are five is the language that they’ll use for their entire life. So if you can just bite the bullet and use language that they’re going to need to use for the next fifty years, even from a young age, I think that’s better than going, ‘Let’s call it your “willy” now and then in five years you have to learn a new name.’ Four teachers from a special school also talked about practicalities related to puberty, and how female students with an intellectual disability refuse to wear bras, which might draw unwanted attention from others.

4. Discussion

There are some positive, and some problematic findings arising from this study. It is certainly reassuring that students with an intellectual disability learn about sex education at schools. In the second author’s personal experience, this was not the case in her schooling years. This study set out to answer two research questions. These are answered below, in light of research literature.

4.1. What Are Teachers’ Experiences with and Perceptions of Sex Education for Students with an Intellectual Disability?

Some participants pointed out topics that are sometimes not covered in sex education, especially (i) sexual and gender identities other than heterosexual identity, and (ii) masturbation. The finding that teachers only cover the topic of heterosexual identity aligns with the literature on sex education of students with an intellectual disability. For instance, Nelson et al. (2020) reported that teachers in their study adopted the heteronormative perspective and assumed that their students with an intellectual disability were heterosexual. In terms of the second often-omitted topic in sex education, it is likely that masturbation was not included as a topic in sex education as it goes against religious beliefs. This is concerning, as students with an intellectual disability have been known to engage in excessive masturbation, and in inappropriate environments, which increases their exposure to physical and verbal violence (Girgin-Büyükbayraktar et al. 2017). This finding is consistent with Strnadová et al.’s (2021a) study with 11 girls with an intellectual disability who also shared that diverse gender identities and masturbation were omitted topics in their sex education at school. While masturbation certainly should not be a taboo in sex education, it equally should not be perceived and presented to students with intellectual disability as “a substitute for sexual intimacy to supposedly reduce behavioural issues” while reinforcing existing misconceptions that people with intellectual disability “should not engage in sexual intercourse” (Gill 2012, p. 487). It is also important to recognise in sex education that while knowledge regarding masturbation is important, it is equally important to acknowledge that some people identify as asexual (Gill 2012).

Another alarming finding was that more than half of the participating teachers experienced their students with an intellectual disability being sexually abused by somebody close to them. This is consistent with the literature about abuse, where it was reported that as compared to students without intellectual disability, those with intellectual disability were more likely to be sexually coerced, abused, and assaulted (Grove et al. 2018). Likewise, Platt et al. (2017) found that women in comparison with men experienced a greater likelihood of being abused by their partners. Research also shows that domestic violence and other forms of gender-based and sexual violence happen to girls and women with intellectual disability twice as likely as to the mainstream population (Feldman et al. 2012). Teachers also discussed the occurrences of domestic violence and the lack of counselling available to students.

Teachers used a variety of teaching practices and approaches; however, they complained about a lack of accessible resources for this population. They pointed out that there is a lack of available counselling at schools for students with an intellectual disability who have been abused and/or neglected. This is similar to the findings from the study conducted by Chappell et al. (2018), where teachers emphasised that there were limited intervention and resources targeted at assisting students with intellectual disability who had experienced sexual violence or who were perpetrators themselves. There is also a dearth of resources to teach sex education to students who have more considerable support needs, such as students with moderate and severe intellectual disability.

4.2. What Are the Challenges in Developing Autonomy Concerning Sex and Relationship Knowledge and Skills in Students with an Intellectual Disability?

Students with an intellectual disability were mostly not included in Individualised Learning Plan (ILP) meetings, and many of them were not consulted about the topics they want to be included in their sex education. Yet, the “collaborative curriculum planning process” is often referred to in the relevant syllabuses in Australia, in connection to developing an appropriate Individualised Educational Plan for students with a disability.

According to teachers, students with an intellectual disability did not receive a copy of their ILP. This is consistent with the experiences of girls with an intellectual disability, as none of 11 participating girls in study Strnadová et al.’s (2021a) received a copy of the ILP. Furthermore, they did not understand the purpose of ILP meetings, bearing in mind that only three of them took part in their ILP meetings. This is concerning, as to develop self-determination skills, students with an intellectual disability need to actively take part in planning for their learning and in developing their ILP. They also need to have an accessible copy of their ILP, so that they can revise what their goals are and whether they are achieving them. This enables students to feel a sense of ownership over the goals set and would be more likely to pursue them (Chandroo et al. 2018). More importantly, students with an intellectual disability could develop goals related to sex education, which can be included in these ILP meetings. This is imperative, as Frawley and Wilson (2016) found that youths with an intellectual disability did not find the factual and biological information they received from their parents on sex education useful. Contrarily, they needed opportunities to ask questions and explore sexuality-related topics. As such, youths with intellectual disability should be actively involved in their ILP meetings in discussing how they would like information on sex education to be delivered and what topics on sexuality they would like to discuss and learn about.

This finding regarding ILP meetings is also consistent with the fact that only three teachers highlighted the importance of students’ self-determination, and only two had strategies in place to teach their students about their disability, rights, and supports. A possible reason for teachers’ lack of focus on students’ self-determination, agency, and rights regarding sex education could be that teachers tend to view students with an intellectual disability as oversexed, innocent, and having limited ability in exercising their sexual agency and understanding sexually appropriate behaviour (Chappell et al. 2018). As such, teachers may adopt a protective approach towards students with a disability, which impinges on their autonomy (Nelson et al. 2020).

4.3. Recommendations for Policy and Practice

Numerous recommendations arise from this study. Firstly, sex education must cover topics such as diverse gender and sexuality identities. Indeed, teachers implementing sex education need continuous support to reflect upon and change their potential perceptions and assumptions that all students with an intellectual disability are heterosexual. Students with an intellectual disability also need to learn about masturbation. Instead of taking a protective approach towards students with these disabilities, a rights-based approach could be adopted.

Secondly, the participants’ common experience of students with an intellectual disability being sexually abused or subjected to domestic violence is alarming. Teachers must be provided with resources on ways to address and support students with an intellectual disability who have experienced sexual abuse. They also need to be aware of how to report cases of abuse to relevant authorities due to the high number of students with an intellectual disability experiencing abuse (Chappell et al. 2018).

Thirdly, teachers’ narratives about the way they approach sex education were predominantly risk-oriented. This is hardly surprising, given their common experiences with their students with an intellectual disability being abused. However, as highlighted by the World Health Organisation’s definition on sexual health, “sexual health requires a positive and respectful approach to sexuality and sexual relationships, as well as the possibility of having pleasurable and safe sexual experiences, free of coercion, discrimination and violence.” (https://www.who.int/health-topics/sexual-health#tab=tab_2, accessed on 6 November 2020). The European Standards of the World Health Organisation further state that sexual education should in the first place be about pleasure (https://www.bzga-whocc.de/en/home/, accessed on 6 November 2020).

Fourthly, every student, regardless of the level of intellectual disability, can benefit from sex education, if adjustments are made to the delivery of the content, and students’ strengths and needs are accounted for (Barnard-Brak et al. 2014). Sex education needs to be thought of as a skill that must be included in an ILP (Barnard-Brak et al. 2014).

Lastly, there is a need to increase teachers’ awareness of accessible resources that can be used to teach sex education to students with intellectual disability. In Australia, where this study took place, there are accessible materials available. For example, the resources developed by the Family Planning NSW also include a resource pack on safe sex for people with intellectual disability on masturbation for boys and girls, etc. (https://www.fpnsw.org.au/factsheets/individuals/disability, accessed on 6 November 2020). SECCA developed accessible resources relevant to learning about relationships, sexuality, and sexual health (https://secca.org.au, accessed on 6 November 2020). Another excellent example of existing resources is the Sexual Lives and Respectful Relationships website developed by Patsie Frawley and her team (https://www.slrr.com.au. Accessed on 6 November 2020). However, many teachers who took part in this study were not aware of these resources.

Furthermore, there is still a dearth of resources accessible to students with profound intellectual and multiple disabilities. A consultative group consisting of teachers, parents, health educators, and the students themselves could be established to determine the resources that would be needed to teach sex education, as well as to ensure that the resources are accessible to students with intellectual disability. Students must also be consulted on the topics that they would like to be addressed in sex education, their preference for the delivery of sex education to be in single or mixed sex groups, as well as the gender of the person delivering the program. Furthermore, additional counsellors should be provided to all schools to support students who may have experienced sexual abuse.

4.4. Recommendations for Research

Future research could explore the impact of teachers’ beliefs and stereotypes about students with intellectual disability on their implementation and delivery of sex education to these students.

4.5. Limitations

A limitation of this study is that it only explores the experiences of teachers in New South Wales, Sydney, Australia. Teachers in other states and countries may have different experiences.