A qualitative study of mothers’ experiences of supporting the sexual development of their sons with autism and an accompanying intellectual disability

Abstract

Objectives

The sexuality and sexual development of individuals with autism-spectrum disorder (ASD) and an accompanying intellectual disability is a neglected area, despite the fact that this group have the same sexual desires as their typically developing peers. Due to the socially marginalized position these individuals are often placed in, parents play a key role in supporting them with their developing sexuality. It is therefore important to understand parents’ experiences and perspectives about their offspring’s socio-sexual needs.

Methods

Five mothers of sons with ASD and a moderate to severe intellectual disability aged 16–24 were recruited from voluntary organizations and interviewed. Interviews were audio recorded then transcribed and analysed using interpretative phenomenological analysis to draw out key themes from their narratives.

Results

The mothers’ narratives were fraught with tensions. While they acknowledged the importance of their sons’ developing sexuality they also thought it brought many challenges. They wanted to provide their sons with appropriate sex education but were concerned that exposure to explicit materials could encourage inappropriate sexual behavior. They wanted support and information to help improve their confidence in supporting their sons’ socio-sexual needs. The mothers also expressed concerns about who would love their sons when they grew up.

Conclusion

This study highlights the need for services to provide sensitive and timely help for mothers who are supporting their sons in relation to their sexual development.

Introduction

Sexual development is a critical milestone of adolescence, occurring irrespective of intellectual ability (Koller 2000). Sexual development is characterized by a myriad of physical, psychological, and behavioral changes which often brings challenges for young people and their families (Kar et al. 2015).

The sexuality and sexual development of individuals with autism spectrum disorders (ASD) is often considered to be a neglected area (Gougeon 2010), which may be a result of the inaccurate perception that these individuals have no interest in sexual behavior and developing intimate relationships. However, research has dispelled these myths by clearly demonstrating that those with high functioning autism and those with ASD and an intellectual disability desire intimate relationships with others (Hellemans et al. 2007) and engage in a range of sexual and intimate behaviors (Van Bourgondien et al. 1997; Hellemans et al. 2007; Byers et al. 2013). Encouragingly, it is increasingly recognized that these individuals have a right to a sexual identity, although this is not always considered to be a vital aspect of their lives. A study by Neuman and Reiter (2017) found that individuals with intellectual disabilities who had intimate relationships had higher quality of life rating scores than their peers.

Despite the benefits that personal and intimate relationships can bring, these can be difficult to navigate for individuals with ASD due to their specific impairments in social communication and social interaction (American Psychiatric Association 2013). Having an intellectual disability also leads to difficulties in understanding, as well as with social and practical skills (American Psychiatric Association 2013).

A specific challenge in the expression of sexuality lies in the fact that these individuals’ sexual desires are accompanied by a lack of social understanding which makes it difficult for them to grasp social norms. This can lead to normal sexual behavior such as masturbation being enacted in inappropriate ways in public places (Gillberg and Coleman 1992; Fegan et al. 1993). Furthermore, the repetitive, restricted, and stereotyped behavior often exhibited by individuals with ASD can lead to inappropriate fixations and obsessions (American Psychiatric Association 2013). Although rare, case reports have described instances where individuals have difficulties with stalking, paraphilias, and compulsive masturbation (Realmuto and Ruble 1999; Ray et al. 2004). Inappropriate sexual behavior can bring people with intellectual disabilities into the contact of the criminal justice system. This is a highly complex area and individuals with more severe intellectual disabilities may be considered to lack mental capacity and therefore not be subject to the legal procedures set out by the Criminal Justice System. In these cases, other supports or provisions are likely to be considered instead.

The socially marginalized position of individuals with ASD and intellectual disabilities means that parents often play a critical role in supporting their offspring’s sexual development. These young people often have little opportunity to engage in sexual experimentation or to learn through informal discussion with peers. Previous research has explored mothers’ experiences of supporting their offspring with intellectual disabilities’ sexual development. Pownall et al. (2011) compared mothers’ experiences of supporting similarly aged siblings with and without an intellectual disability. Overall, mothers adopted a reactive approach to addressing sexual matters with their children. Consequently their typically developing offspring’s growing autonomy forced mothers to talk more openly about sexual matters to help keep their offspring safe. In contrast, the continuing dependence of offspring with intellectual disabilities meant that their mothers were less likely to believe it was necessary to talk to them about sexual matters. Mothers have also reported that they lacked the confidence and support to assist their offspring with intellectual disabilities with sexual matters (Clegg et al. 2001).

As parents play a crucial role in providing sex education and support to their offspring with ASD and an intellectual disability, understanding their perspectives gives a valuable insight into the support needs of these young people, particularly as many of these individuals will not be able to articulate their own experiences and beliefs. A study by Ruble and Dalrymple (1993) used questionnaires to explore parents’ experiences of supporting their offspring with ASD in relation to sex education, socio-sexual awareness and sexual behaviors. The results suggested that parents believed sex education was less relevant and were less likely to provide this education to offspring with more significantly impaired verbal skills. There was considerable variation in parental concerns and beliefs regarding their child’s sexuality, although they were most concerned that their child’s sexual behavior would be misunderstood and viewed negatively by others. While Ruble and Dalrymple’s questionnaire study provided valuable information, it could not provide insight into the broader context of the parents’ experiences and beliefs regarding their offspring’s developing sexuality.

A study by Biswas et al. (2017) utilized a grounded theory approach to explore parents’ views of the transition into adulthood of their sons and daughters with a severe intellectual disability. The parents in this sample appeared to have open attitudes toward their child’s sexuality; however, they did express uncertainty about how best to support their child in this area. The parents’ uncertainty seemed to be related to the perceived gap between their child’s physical development and their child’s cognitive-emotional development. Biswas et al. found that the parents tended to seek professional support and advice, with one child being prescribed medication to suppress their sexual desires. The study also highlighted the struggle between the parents’ desire for their child to be independent and their fears about the risk of abuse that their child may be vulnerable to. This study provides valuable qualitative information about the experiences of parents of those with severe intellectual disabilities. However, there is an absence of research concerning the parents of those with ASD and an accompanying intellectual disability.

This study aimed to address the gap in the literature by undertaking an exploration into the lived experience and views of mothers of sons with ASD and an intellectual disability, in relation to their sons’ sexuality and sexual development. Fathers’ experiences are equally pertinent and also need to be explored. The decision to focus on mothers in the present study was to ensure homogeneity of the sample.

Method

The qualitative approach used in this study was interpretative phenomenological analysis (IPA) which is used to investigate how individuals make sense of major life experiences (Smith et al. 2009). This study drew inspiration from previous work carried out with mothers of individuals with intellecual disabilities (Pownall et al. 2011). At an epistemological level IPA is underpinned by an emphasis on phenomenology and understanding the personal perspective. It also acknowledges the role of dual hermeneutics in qualitative research; a two stage interpretation process where the researcher attempts to make sense of the meaning that the individual gives to their subjective experiences (Smith and Osborn 2008).

Participants

A purposive, homogenous sample was recruited (Smith et al. 2009) from voluntary organizations providing care, support, or advice to individuals with ASD and/or intellectual disabilities and/or their families. Participants were also recruited through a school for young people with ASD. Participants were mothers with a primary caregiving role who met the following inclusion criteria: have lived with their offspring since birth and through adolescence; their offspring was required to have a diagnosis of ASD and a moderate to severe intellectual disability and be aged between 14 and 30. The study was originally open to both mothers of sons and daughters, but only the former responded to recruitment advertisement for the study.

Participants for the study were five mothers of sons with a diagnosis of ASD and a moderate to severe intellectual disability. Their sons were aged between 16 and 24. Their sons received full-time support from their families or professional caregivers. This relatively small sample size is characteristic of IPA research, where the focus is on the detailed examination of a small, homogenous sample (Smith and Osborn 2008). Background information about each participant is detailed in Table 1 to provide context (pseudonyms have been used to preserve anonymity).

Table 1. Participant characteristics.

Anne lives with her husband and her son, James, who is 24 and has ASD and an intellectual disability. She also has an older son who no longer lives at home. James will be moving out soon into his own accommodation where he will receive full-time care

Frida lives with her husband and two sons. Her older son, Kian, is 16 and has ASD and an intellectual disability. He attends a specialist day school

Jane lives with her son, Daniel, who is 16, who has ASD and an intellectual disability. She has an older son who no longer lives at home. She has a partner but they do not live together. Daniel spends time with his father and step-mother and their children. Daniel attends a specialist day school

Elaine lives with her son, Sam, who is 16 and has ASD and an intellectual disability. She is separated from Sam’s father. Sam attends a specialist residential school

Wendy lives with her husband. Her youngest son, Chris is 24 and has ASD and an intellectual disability. He has lived in his own home for four years, where he has a full care team in place

Procedure

Individual interviews were conducted in settings that afforded privacy and were free from disruption, and lasted between 49 and 84 minutes. One interview was conducted over the telephone because it proved more convenient for the participant. Previous studies have found telephone interviews to be a sensitive approach, with no apparent differences in the quality of data obtained by face-to-face and telephone interviews (Sturges and Hanran 2004).

The principal researcher adopted an exploratory stance during the interviews, using a semi-structured approach, asking open-ended questions to promote discussion and with the aim of obtaining rich, detailed narratives. Examples of open-ended questions in the interview included: ‘Can you tell me about the changes you noticed during your son’s adolescence?,’ ‘How did you feel about your son’s sexual behaviors?,’ ‘How do you feel about supporting your son with issues in relation to sexuality?’ The topic guide was developed with reference to the existing literature and through discussion with the research team. The interview was piloted to ensure the interview was engaging and relevant to the parents. Prior to the interviews, the researcher attempted to ensure the participants were put at ease. Given the sensitive nature of the topic being discussed they were also offered the opportunity to take a break at any time, although this offer was not taken up by any of the participants.

The interviews were audio recorded and transcribed verbatim by the principal researcher to ensure she became familiarized with the content. Pseudonyms were assigned to preserve anonymity and any information that could potentially identify the participants was removed from the transcripts.

A number of steps were taken to help promote rigor and transparency during the process of analysis. A sample of transcripts, along with the emerging themes, were read by a second member of the research team to audit the process of analysis, and different possible interpretations were discussed. The primary researcher maintained a reflective journal throughout the analytic process to chart key decisions that were made when drawing out themes. A summary of each interview was also produced in order to ensure that the final themes reflected the overall experiences of each of the participants, as well as being grounded in the data extracted from across the sample of participants (Elliott et al. 1999).

Researcher reflexivity

The researcher reflected on how her experience and beliefs helped to influence her interpretation of the data, taking time to do this following the completion of each interview and during the data analysis process when emergent themes were identified in the transcripts. The aim was to reduce the impact that the researcher’s prior experiences, which involved working clinically and in a support role for individuals with learning disabilities and ASD, had on the analyses. For example, through this reflective process the researcher recognized that her desire to avoid contributing to the negative discourse around the sexuality of individuals with ASD and intellectual disabilities, was having an impact on the emergent themes. This was documented in the reflective journal and discussed in research meetings to ensure the emergent themes reflected the challenges being described by the mothers in the study. The reflective journal also helped the researcher to reflect upon her emotional reactions during the process of collecting and analysing the data. The researcher was struck by the resilience and tenacity demonstrated by all the mothers in the study and moved by the unwavering dedication to ensuring their sons were receiving the support they required.

Data analysis

In line with Smith et al.’s (2009) recommendations, the first stage of analysis involved reading the transcripts several times to ensure familiarization with the data. The transcripts were then re-read and comments were added to provide a summary of the data and to make any initial interpretations. Interesting or unusual uses of language, moments where high-levels of emotion were expressed and tensions or contradictions in the mothers’ accounts, were noted. For example, one mother described her understanding of her son’s difficulties as a ‘developmental glitch,’ which appeared her to convey her sense of hopefulness that his problematic sexual behaviors would dissipate in time. This word also seemed in contrast to some of the more serious difficulties that she had described. One son was described as being full of ‘anguish, angst, and anxiety;’ the alliteration providing further emphasis to this point. The word ‘ferociously’ was used a number of times by one mother to explain the veracity with which she sought out information and resources to support her son.

Emergent themes were then identified from the initial notes, by creating a summary phrase to encompass the crux of the theme; these were often direct quotations from participants. Superordinate themes and subthemes were then identified by exploring and making connections between the emergent themes. Once each transcript had been analysed, patterns, and connections across interviews were explored.

Ethical considerations

Ethical approval was obtained from the College of Medical, Veterinary and Life Sciences, University of Glasgow Ethics Committee, and, practice guided by The British Psychological Society Code of Human Research Ethics (2014). Ethical issues that were considered included the emotive topics covered in the interview. It was also important to strike the appropriate balance between maintaining the confidentiality of both the participants and their sons, while providing sufficient information and quotations to explain how the results were developed.

Results

The topic of sexuality appeared to be of real and immediate concern to the mothers in this study although the impact on each participant was quite different. Four superordinate themes with a further four subthemes emerged from the analysis. Each of the superordinate themes and subthemes is discussed below. Themes are presented in quotations and italics to illustrate each theme. In the presented extracts […] indicates that some text has been removed.

Emerging sexuality

An unfair burden?

Many of the mothers appeared to feel confused about their sons’ emerging sexuality. They were anxious about the potential impact of challenging sexual behaviors but they also recognized that their sons’ sexuality was an important part of their identity. Some of the mothers appeared to believe that sexuality was a burden to their sons and described feelings of injustice and sadness surrounding the incongruity between their sons’ cognitive abilities and their sexual development:

When he was about 12 his voice started to break and [my other son] was older when that happened and I thought this is particularly sad that a lad that is developmentally delayed and very immature should be going through puberty quicker. (Anne)

Anne’s views demonstrate the emotional impact of watching her son develop into an adult, whilst remaining emotionally immature. Many participants also expressed sadness that their sons had sexual feelings and desires, but were unable to form appropriate, fulfilling relationships that would allow them to enact these feelings:

It’s one of those things where I sometimes think with the level of (intellectual) disability Sam has, and the way his autism affects him with regard to his understanding of social and everything else, I think it’s really unfair, if there is a God in this world, I think it’s really unfair, really you couldn’t take all the mechanisms and make them not work? (Wendy)

Anne’s son had experienced significant challenges with his sexual identity, which had caused him considerable distress and had resulted in him engaging in extremely serious sexually related self-harm. The following quotation illustrates the significant emotional impact that this incident had on her and her husband:

We were just shocked and profoundly, profoundly sad about it all, that he should do something so horrible […]. We just wept, it was just so sad […] and it just brought home to us, how very, very vulnerable James is. (Anne)

There was a tension in these narratives, between their acknowledgment of the importance of their sons’ sexual identities and the overarching belief that their sons’ lives would be easier if they did not have these sexual desires.

A challenge to address?

The mothers in this study described their sons’ physical, emotional, and behavioral changes as they lived through adolescence. In relation to their sons’ sexual development, the mothers described somewhat polarized views dependent on whether their sons had displayed problematic sexual behavior or not. For Wendy and Elaine, despite their concerns about the challenges that might arise during this time, adolescence had in fact been quite unremarkable. Their sons had exhibited sexual behaviors, for example, masturbation, but had required little intervention from their mothers to ensure these were enacted appropriately. Elaine discusses how her experiences of Sam’s sexual development contrasted with her expectations:

Well when the masturbation started, I was really worried because I had heard horror stories, well stories about kids who would do it anywhere, that would just take their clothes off, but right from the start, he seemed to know it was a private thing. Even if I was to go upstairs and he was masturbating in his room, he made a certain noise, that means don’t come in. (Elaine)

For these mothers, their main concern was not their sons’ sexual behaviors themselves but how other people reacted to them. As Wendy explained:

I think a few times he has been in the gents […] and he can stare at things and he is not necessarily staring at the guy next to him having a pee […] but a few men have made comments because I suppose they are feeling vulnerable […] I suppose from my point of view its people’s perceptions of what he is doing that is likely to cause more problems than necessarily what he does do. (Wendy)

The experiences of Wendy and Elaine contrasted with those of the other mothers. For the other mothers, their sons’ adolescence had been a very difficult time due to sexually challenging behaviors, which had the potential to have a very negative impact on these young men’s future lives. These behaviors included exposing themselves in public; inappropriately touching others; masturbating in family areas at home; becoming pre-occupied with genitals and one incident of serious sexually related self-harm. Jane’s son had behaved inappropriately toward her, which she had found very difficult to deal with:

I was kind of half lying on the sofa and he walked passed me and just quick as a flash, he just looked at me […] and jumped on top of me […] what he wanted to do was jump on top of me and rub himself on me. (Jane)

There was a sense that the mothers had found these behaviors shocking and felt ill-prepared to deal with them. For Frida, there was the additional complication that her son’s sexual behaviors were incongruent with the family’s cultural beliefs. Overall, it appeared that these mothers were struggling to cope with the responsibility of constantly trying to monitor and prevent challenging sexual behaviors from escalating. The mothers were frightened that their sons’ behaviors might have a detrimental impact on their lives and result in them becoming socially marginalized. Jane explained her fears about her son being detained as a consequence of his challenging sexual and violent behavior directed toward her:

I am scared he will be removed from me and I won’t be able to look after him anymore. I am scared that neither of us will have a choice in it and he would be sent to forensic medicine […] I am scared he will be removed, medicated […] that is my absolute biggest fear, that is what I am really scared of, like his life being drastically altered […] and being taken away from each other. (Jane)

This quotation illustrates Jane’s worries, fears and her feeling of powerlessness in this situation. Jane’s account was characterized by conflicting feelings; she desperately wanted to continue to care for her son, but was also at times frightened of his behavior. Frida and Anne’s sons had both been questioned by the police about their behavior. No further action was taken once the police had established their sons’ level of capacity. Nevertheless, this was understandably a frightening ordeal for the young men and their mothers.

There appeared to be an overarching fear that sexual behaviors, or even typical behaviors that were interpreted by others to be sexual, could limit the life opportunities and experiences available to their sons:

I suppose that’s the overriding factor of everything to do with him. I want him to have as wide a range of activities, places he can go to, that he can access. I don’t want him to have a small world he is limited to. And if we don’t look at these kind of behaviors and do something with them, we are going to limit that access. We are going to make his world smaller, rather than bigger. (Wendy)

For one of the mothers, Anne, these fears had been realized. Her sons’ behavior had become so challenging and stressful that she made the very difficult decision that he needed to move into his own accommodation:

Social work said we needed to be with James at all times. If he came back to the house, we had to be there and if we weren’t there [his support service] needed to inform the police, so because of all the restrictions this put on our lives, [my husband] and I decided enough is enough and we decided it was best for him to move out and for us to solely be his parents. (Anne)

Another participant, worried about the potential impact of her son’s masturbation on his younger brother, who he shared a bedroom with. Frida explained:

At least I try to learn him not to do that in front of other people, especially his brother […] he is still a child, so it is not good for him to see this. So for me, how can I feel? I have no choice I have to live with this situation, but at least reduce the risk for my son, my other son. (Frida)

Challenges of providing sex education

I don’t know the right thing to do

The mothers seemed to face a significant dilemma in relation to providing sex education to their sons. They recognized the importance of helping their sons to understand social rules and norms, however, they were fearful of the potential consequences of providing information about sex. It appeared that they were frightened that this could heighten their sons’ sexual desires and exacerbate challenging sexual behaviors. In general, the mothers focused on helping their sons understand the differences between public and private settings and understanding appropriate touch. One mother explained her concerns about showing her son pictures of female genitalia to help him understand the physical differences between men and women:

I am very aware of his susceptibility if he sees something. I am quite worried he will try to enact it. I am worried about him seeing sex on TV or anything like that. Because I feel right now he is really open to anything sexual and I am worried if he sees something, he won’t be boundaried to know that it is between two consenting people. (Jane)

Some of the mothers said they had been somewhat successful in helping their sons understand about appropriate places to masturbate. However, one mother thought her son had perseverated about aspects of the sex education he had received and linked this to his attempt to touch a young boy which, in turn, had led to him being reported to the police:

It has been suggested retrospectively you know, how effective was that education when it led to that, and certainly [the voluntary organization’s] impression was, with all the visual imagery, it had made him more fixated on certain aspects and it had made him worse behaviourally. (Anne)

Overall, the mothers recognized the importance of meeting their sons’ socio-sexual needs but lacked the confidence in deciding what information to share and how and when to provide it:

I don’t want him to think it’s wrong because it’s absolutely not wrong, but we are going to have to work on the how’s and the when’s and when it is appropriate and how are we going to manage that? Because […] his understanding of language at that point was very limited […] so I suppose I was trying to work out how to tackle that but, how, I had absolutely no idea. (Wendy)

The mothers expressed frustration about the lack of suitable resources to meet their sons’ needs.

I am surprised to learn that the resources aren’t just there. It’s something I am quite surprised about- it seems to be the one area of development that is brushed over a lot. (Jane)

There is no point beating about the bush

The participants talked about the challenges associated with talking to their sons about their sexuality due to their limited verbal communication skills and their difficulty understanding the subtleties of social rules and norms. They talked about the importance of discussions being clear, considered and explicit. There was also a general view that having an in-depth knowledge of their sons’ sexual behavior was necessary in order to protect their sons. Wendy described how this differed in comparison to her experience with her other son:

I need to be more open and honest and there is no point beating about the bush with Chris. If you want to explain to somebody about Chris, you have to be explicit. That’s the way it is. There is no embarrassment, I have to know exactly what he is doing, you have to be able to explain it to me, and we have to be comfortable with this. Because ultimately, we are trying to keep him safe. Whereas with [my other son] the conversations are completely different, there is probably more embarrassment and innuendo than anything else, because it is such a private and intimate thing. (Wendy)

On the other hand, some mothers acknowledged that it was neither easy nor comfortable to have intimate knowledge of their sons’ sexual development. One participant explained her conflicting feelings about having detailed insight into her son’s sexual behaviors:

As far as I am his mother and [my husband] is his father and we didn’t know anything about [my other son’s] sex life and we don’t feel like we want to be privy to too much sort of personal detail, about the specifics because we feel in many ways that would be obstructive. But the other side of it is that we recognise that James is a vulnerable adult and we love him more than any of the professionals […] it’s very difficult because we don’t want to know about the personal stuff because we are his parents, but we would want to be protective of him and we wouldn’t want anyone making decisions that aren’t the best decisions for him. (Anne)

Taking on more active role in relation to their sons’ sexual development was seen as being part of the broader role of parenting a son with intellectual disabilities. Jane explained her feelings with regard to assisting her son to maintain cleanliness after he had engaged in masturbation:

I am used to a certain level of intimacy in terms of personal care, and so I am used to that and it’s just an extension of that. I think it might be different if I wasn’t providing personal care in other areas, I might have struggled more. I mean, I would rather not. If I could choose some of the things I didn’t have to do they would be the things I would choose. But I just have to. (Jane)

There were also cultural sensitivities that made the mothers’ tasks even more challenging. Frida, who came from a predominantly Muslim country, explained that sexuality was not a topic that would typically be addressed openly within the family. However, Kian’s sexual behaviors, namely his difficulty understanding where to engage in masturbation and where to undress, meant his mother had been forced to address sexual matters:

In our culture, we are not allowed to [masturbate] […] I can’t, I can’t get him not to do this, because it’s a natural thing, so […] at least I try to teach him not to do it in front of people, especially his brother. (Frida)

Abuse: an unbearable prospect

The mothers found it almost unbearable to think about the possibility of their sons being a victim or perpetrator of sexual abuse. Jane talked about her fears in this regard:

Well I think he is really vulnerable because he doesn’t really understand the implications of his actions, he doesn’t understand consent, whether that is his own consent or someone else’s consent. I am worried about him being, em, sexually abused. That is my biggest worry. I am worried about him, I don’t think he would sexually molest someone but that incident with me has opened up in my head, what if he tries to do that to someone else, without that, you know sexual assault. (Jane)

The prospect of their sons being vulnerable to abuse from others was understandably a highly emotive and difficult topic for mothers to discuss and even contemplate; this was evident by this subject only arising toward the end of the interviews and by many participants faltering before using the word ‘abuse.’ The mothers were worried about how they would recognise if their sons were being abused, because of their limited communication.

It’s always on the back of my mind. I think, how will I know? Because his communication is such, I will not know if anything is going on that shouldn’t be going on. Because he can’t tell me. The only way I would eventually work it out is because his behaviors would show something wasn’t right, but by the time I worked it out by seeing the behaviors and working out what could potentially be the problem, I know that he could be exposed to whatever he has been exposed to for quite some time. Now, up until now, everything has been great and I am not suggesting for one second this is something that is foremost in my mind, because it’s absolutely not. But it is there and I would be lying if I said it wasn’t. (Wendy)

Love in the future

The mothers described their wish for their sons to have full, enriching lives where they are safe, respected, and cared for. However, there was a sense of both sadness and acceptance that their sons may never enjoy an intimate relationship with another person.

For me as a mum, I would be happy if he had a girlfriend or got married, in future, have children. But these are all wishes […] if he lives a happy and safe life, that’s what I want. It doesn’t matter if he doesn’t marry or have children, no it doesn’t matter to me. I just want him to be more independent on himself and happy and safe and that’s it. (Frida)

Many of the mothers described the physical intimacy they shared with their sons and the mutual pleasure that they took from this contact. They expressed their worries about the potential long-term impact of this lack of physical affection.

I think of him as a young adult and I suppose he is not going to have that sexual experience, and that is a sad thing really, because he loves touch and he loves cuddles and I wonder how that is going to affect him in adulthood. (Elaine)

Whilst the lack of intimacy and relationships was a significant source of sadness for these mothers, it seemed that this was regarded as symptomatic of their sons’ continuing need for support in their everyday lives and their lack of autonomy.

Interviewer: ‘You mentioned that you don’t think Daniel will develop a relationship in the future, how does that make you feel?’

Jane: ‘I do feel quite sad about that, but I feel sad in general. I am not going to be able to look after Daniel forever. Daniel is going to need care for the rest of his life, so it ties in with that to me, that he will never lead an independent life. And that includes relationships, intimacy, and just being able to do what he wants in life, whether that is to stay in bed until 12 pm on a Sunday, or go out whenever he wants to, or have an intimate relationship, or speak to someone when he wants to. He’s not going to be able to do that, it’s up to other people to do that’.

Two mothers had read about individuals with intellectual disabilities being supported to meet their sexual needs, such as being taught to masturbate properly. They appeared tentative and uneasy about raising this topic and were at pains to state that it was not something they would do themselves. Nevertheless, it highlighted the mothers’ concern that their sons may never be able to properly express or experience this core aspect of their humanity.

Discussion

It was clear that irrespective of the impact of the sexual behaviors their sons exhibited, the issue of sexuality was one of significance to all the mothers in the study. Their narratives were also fraught with tensions. The mothers described trying to support their sons’ emerging socio-sexual needs, whilst trying to prevent challenging sexual behaviors which they feared could have damaging consequences. In a similar way, while the mothers wanted their sons to enjoy rich fulfilling lives and recognized the important role that sexuality played in their wellbeing, they also talked about sexuality as being a burden that could limit their life opportunities. Finally, they felt they had a critical role to play in their sons’ developing sexuality but sometimes expressed discomfort about the level of intimate knowledge they had about their sons’ sexual behaviors.

The findings highlight that challenging sexual behavior is not an inevitable part of adolescence of this group. For two of the mothers in this study, their sons’ adolescence was quite unremarkable, in contrast to their expectations. One young person appeared to have an innate sense about where it was appropriate to masturbate, discriminating between public and private settings. Much of the behavior described by the mothers in this study is typical. However, a lack of social understanding meant that inappropriate masturbation in public settings was a problem reported by some of the mothers. In line with previous research, the mothers were most concerned about other people’s reactions to the behaviors (Ruble and Dalrymple1993).

The mothers often described being unprepared for their sons’ adolescence and emerging sexuality and had struggled to cope. They had found this to be a difficult time for both their sons and their families. They were distressed by the emergence of challenging sexual behaviors, commonly exhibited by these young people, such as masturbating in public, inappropriate touching of others and exposing oneself in public (Gillberg and Coleman 1992).

The findings are consistent with previous research which has highlighted parents’ lack of confidence when supporting the sexual development of young people with intellectual disabilities and the paucity of information and professional support (Clegg et al. 2001; Pownall et al. 2011; Biswas et al. 2017). The findings also mirror results of previous research which illustrates that mothers of young adults with intellectual disabilities adopt a reactive approach to managing the sexual behavior of their offspring, by responding to these behaviors as they occur (Pownall et al. 2011). What was not found previously was that mothers in this study were worried that providing their sons with information about sex could inadvertently exacerbate sexual problems. One mother directly linked the sex education her son had received with his challenging sexual behaviors. It is clear that mothers need sensitive and timely support with regard to their offspring’s sexual development (Koller 2000; Sullivan and Caterino 2008), and for sex education resources to be person-centered, developmentally appropriate and be relevant to the strengths, limitations and specific needs of the individual (Koller 2000).

Receiving timely support may also help families to adopt a more proactive approach to facilitating more appropriate sexual expression. Gougeon (2010) suggests tackling inappropriate sexual behavior as a social skill deficit, rather than a deviant or problematic behavior can help to break down the stigma and taboos associated with such behavior. Having an open dialog about sexuality and sexual problems is key to addressing the difficulties that parents and young people encounter. This will help caregivers feel more comfortable with the level of intimacy that is often required to effectively support their offspring to express their sexuality; for example teaching their sons about effective and safe masturbation practices. While the mothers in this study clearly felt comfortable to discuss this personal and sensitive issue, this may not be representative of many mothers in similar situations. There is a need to be mindful of the impact of culture on how families deal with sexuality. Health and social care services need to adopt sensitive approaches to providing support to young people and their families from different cultural backgrounds.

Previous research has highlighted concerns regarding the vulnerability of girls to abuse and clearly there are gender-specific concerns affecting females regarding the risk of pregnancy (Dilorio et al. 2009). This study however, clearly highlights that abuse is also a real and significant concern to mothers of sons. Sadly there is an increased risk of abuse for young people with ASD and intellectual disabilities (Mansell et al. 1998) and therefore it is entirely understandable that this would be a significant source of concern for mothers in this study.

An unexpected finding from the present study was mothers’ perceptions about the importance of touch and intimacy to their sons, which is often minimized when thinking about individuals with ASD. The mothers were worried about who would provide this physical affection to their sons when they were no longer present. The importance of physical touch for these individuals has also been demonstrated in other studies (Hellemans et al. 2007). The present study, therefore, poses an important question about how to meet the needs for physical affection expressed by these young people. It is unclear how social care services are currently meeting these needs, although there is some evidence to suggest that services can create barriers to individuals engaging in physically intimate behaviors by limiting private spaces (Knox and Hickson 2001) and by preventing opportunities for intimacy with others (Lofgren-Martenson 2004). It is recognized that this is a complicated and difficult area to navigate, particularly for those with more severe impairments, where the issue of capacity and consent may raise complications. However, it does seem vital that services be cognisant of these individuals’ needs for physical intimacy and affection, particularly when parents and other family members may be unable to do so.

Clinical implications

The mothers who participated in the present study clearly felt comfortable to discuss this sensitive topic of their offspring’s developing sexuality, but this may not be the case for many parents. The current findings highlight the need for the sexuality of individuals with ASD and an accompanying intellectual disability to be discussed routinely with their parents, alongside their offspring’s other health and social needs, in order to promote more positive approach and attitudes. This will allow for person-centered support and interventions to be offered to the young person with ASD and an intellectual disability, and ensure that parents and carers who are struggling with the challenges associated with their child’s sexual development receive timely support. It is also hoped that having routine discussions about sexual development this will help to reframe the problems these young people may face as social skills deficits rather than deviant behavior, thereby reducing the associated stigma. Parents and carers also need to have better access to resources about sexuality in order to help them feel more confident about addressing this topic with their offspring.

Limitations

This study has a number of strengths and valuable contributions to the evidence base, however, it is important to note the limitations of the study. As previously discussed, these include the possibility that the mothers who chose to participate had experienced more extreme difficulties or were more open to discussing this intimate area. There were also great difficulties recruiting to this study. Challenges with recruitment may suggest the area of developing sexuality is not as problematic as currently thought for families or alternatively, sexuality may still be taboo for many families, who may be reluctant to discuss this topic.

Furthermore, the study was intended to capture the experiences of mothers of both sons and daughters. Perhaps future research could focus on mothers’ perspectives of their daughters’ developing sexuality, to allow a comparison and exploration into the similarities and differences between genders.

Given the significant issues that have been highlighted in this study, further research needs to be conducted into the sexual needs and education of this group of young people, in order to provide better support to them and their families. Future research should also explore parental perspectives and experiences of supporting their daughters’ developing sexuality.

Conflict of interest

No potential conflict of interest was reported by the authors.

Contributors

RP conceived and designed the study, obtained ethics approval, analysed the data, wrote the article in whole/part, revised the article. AJ conceived and designed the study, wrote the article in part, helped revise the article.