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Establishing a sexual identity

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The physical and emotional changes that occur in adolescence are part of the process of sexual maturity. These changes occur irrespective of ability and are often aligned with psychological and social factors. When the nature of a disability has an inherent limitation in social awareness, as is the case for individuals with autism, the achievement of personal sexual identity can become much more complex. Challenges in supporting individuals in this respect can be caused by the sensitive aspects of inappropriate behaviour, the abstract nature of teaching the topic, and the general reluctance on the part of parents and staff to discuss sexuality in individuals with disabilities. This article explores how a residential school addressed this gap. It provides details of how this need was met for seven students and the process undertaken to involve staff, parents and other stakeholders to establish ongoing support.
... Six articles analyzed the behavioral effects of different interventions [8,9,13,21,24], Vissier et al. 2017). Of these articles, five analyzed the results qualitatively and only one analyzed the results quantitatively [25]. ...
... For the five qualitative articles, improvement in behaviors were varied due to the different nature of the interventions delivered. For example, notable changes in participants include a decrease in masturbation frequency from 14 times/day to 2-3 times/week [8], a decrease in aggressive behaviors, unsafe sexual behaviors, destruction of property, and self-harm [21], the development of adequate masturbation technique within 3 and ½ months as well as the development of an ability to self-manage urges and understand that masturbation is performed in the bedroom within approximately 8 weeks [24], or the development of complete autonomy in performing menstrual care [13]. ...
... However, two of the six articles also reported ineffective interventions [8,24]. Despite the decrease in masturbation frequency reported in the first article, the techniques used did not lead to an improvement in other problematic behaviors exhibited by the youth. ...
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Sexuality and intimate relationships are topics of interest to adolescents and young adults with Autism Spectrum Disorder (ASD). Given their relative difficulties to the social dimension, several intervention programs have been developed to meet this demand, but the complexity of the reality experienced by these young people limits the effectiveness of these intervention programs. To find the effects of different intervention programs to influence the development of sexuality and sexual health of adolescents with ASD and determine the impact of these interventions on the parents, through a systematic review. Literature review conducted on November 27, 2019 in the psycINFO, Pubmed, web of science and CINAHL databases. Intervention programs consisting solely of teaching sessions improve the knowledge of the youth. However, when they also included a direct approach or homework, behavioral effects were also observable. Parent-focused intervention programs resulted in a slight increase in parents’ comfort level and ability to interact well with their youth. Intervention programs targeting school-based workers appear to have a limited effect, having good concrete results with youth for some workers and no results for others, while intervention programs targeting health professionals have no conclusive results. The results of the literature review are not very transferable to practice because of the low level of evidence in the articles included, however, they offer an interesting starting point. Further research is needed to equip health professionals to intervene in sexuality after youth with ASD.
... Sexuality is a natural and healthy part of life and encompasses knowledge, beliefs, attitudes, values, and behaviors of individuals. However, parents may find it difficult to communicate about sexuality-related topics with their child diagnosed with intellectual and developmental disabilities (IDD) (Sinclair et al., 2015;Tissot, 2009;Travers & Tincani, 2010). Parents encounter prevailing and numerous myths alleging that individuals with IDD may be dependent and childlike, asexual, and incapable of feeling because of their developmental, cognitive or social delays (Ballan, 2012;Esmail et al., 2010;Holmes & Himle, 2014;Sinclair et al., 2015). ...
... Most parents eventually face the challenge of teaching their child about sexuality and may need the help of additional strategies to support the transition to sexual maturity. As children with disabilities enter puberty, they experience the same desires and physiological responses as other adolescents, which is often overwhelming to parents and caregivers (Hellemans et al., 2007(Hellemans et al., , 2010Tissot, 2009). Guidance for parent-child communication about sexuality for children with IDD can increase a family's understanding about developmental growth and their ability to adapt to these changes with confidence (Treacy et al., 2018). ...
... Supporting individuals with disabilities through sexuality education and expression can improve their quality of life (Grove et al., 2018). Education on sexuality-related topics can help families develop skills to support their child's sexual independence and autonomy (Holmes & Himle, 2014;Prelock & Vargas, 2004;Tissot, 2009). Effects of sexuality education include a positive self-image, selfconfidence, gender equity, and abuse prevention (Blanchett & Wolfe, 2002;Clatos & Asare, 2016). ...
Article
Parents are often responsible for educating their child about sexuality and relationships, yet many parents may not be aware of the sexuality-related topics to teach. Sexuality education is critical for children with autism and intellectual disabilities, who are often vulnerable to sexual abuse and other sexual behavior outcomes. Families teaching sexuality can help their child learn about healthy hygiene, interactions, and relationships. The purpose of this study was to implement a brief sexuality education training for parents and caregivers who have children diagnosed with intellectual and developmental disabilities, including autism. A Wilcoxon-signed rank test revealed a statistically significant change in parents’ (1) attitudes and beliefs, (2) level of communication, and (3) competence to teach sexuality topics following participation in the sexuality education training program. Strategies were provided to assist parents in effectively providing sexuality information to their child with intellectual and developmental disabilities. Educators are urged to increase their awareness of this unmet need and to partner with families to implement strategies that promote the physical, emotional, and social independence of individuals with autism and intellectual disabilities.
... Sexuality is a natural and healthy part of life and encompasses knowledge, beliefs, attitudes, values, and behaviors of individuals. However, parents may find it difficult to communicate about sexuality-related topics with their child diagnosed with intellectual and developmental disabilities (IDD) (Sinclair et al., 2015;Tissot, 2009;Travers & Tincani, 2010). Parents encounter prevailing and numerous myths alleging that individuals with IDD may be dependent and childlike, asexual, and incapable of feeling because of their developmental, cognitive or social delays (Ballan, 2012;Esmail et al., 2010;Holmes & Himle, 2014;Sinclair et al., 2015). ...
... Most parents eventually face the challenge of teaching their child about sexuality and may need the help of additional strategies to support the transition to sexual maturity. As children with disabilities enter puberty, they experience the same desires and physiological responses as other adolescents, which is often overwhelming to parents and caregivers (Hellemans et al., 2007(Hellemans et al., , 2010Tissot, 2009). Guidance for parent-child communication about sexuality for children with IDD can increase a family's understanding about developmental growth and their ability to adapt to these changes with confidence (Treacy et al., 2018). ...
... Supporting individuals with disabilities through sexuality education and expression can improve their quality of life (Grove et al., 2018). Education on sexuality-related topics can help families develop skills to support their child's sexual independence and autonomy (Holmes & Himle, 2014;Prelock & Vargas, 2004;Tissot, 2009). Effects of sexuality education include a positive self-image, selfconfidence, gender equity, and abuse prevention (Blanchett & Wolfe, 2002;Clatos & Asare, 2016). ...
Article
Children living in geographically rural areas may have limited access to early, intensive evidence-based interventions suggesting children residing in these areas are less likely to experience positive outcomes than their urban-dwelling peers. Telehealth offers an option to rural families seeking early intervention by using communication technologies where providers are able to consult and deliver services in real-time over geographical distances. To our knowledge, no other study has examined the implementation of P-ESDM in rural natural environments within the framework of the state’s early intervention program. Using a multiple baseline design across participants, the current study investigated the effects of the parent-Early Start Denver Model implemented within a rural northeastern state’s existing IDEA Part C early intervention program. Parents demonstrated increased fidelity to intervention strategies and reported satisfaction with the program’s ease of implementation and observed child gains. Statistically significant pre-to post- change in children’s ASD symptomatology were reported for the domains of communication, social reciprocity and repetitive and restricted behaviors. Support for parent-mediated interventions, the importance of fidelity of implementation for sustainability of intervention strategies, and the need to explore telehealth as a viable service delivery option to improve developmental trajectories for toddlers with autism are discussed.
... Sexuality programs at school appear to be the predominant source of sexuality information for adolescents with ID (Corona, Fox, Christodulu, & Worlock, 2016;Jahoda & Pownall, 2014;Löfgren-Mårtenson, 2012;Tissot, 2009). Adolescents with ID reportedly received significantly less sexual information from doctors than their non-disabled peers; while both groups of teens received sexual information from the media (Jahoda & Pownall, 2014). ...
... A number of teaching methods have impacted adolescents with ID's experiences of sexuality education within schools. In students with mild to moderate ID, small, gender-divided groups have been perceived positively (Löfgren-Mårtenson, 2012), but adolescents with severe ID appear to respond well to individualised programs (Tissot, 2009). Verbal delivery of sexuality educationincluding complex questions, multiple-choice questions, and the use of conditional clauseshave reportedly contributed to poor comprehension in this group (Finlay, Roehlder, Taylor, & Culfear, 2015). ...
... Verbal delivery of sexuality educationincluding complex questions, multiple-choice questions, and the use of conditional clauseshave reportedly contributed to poor comprehension in this group (Finlay, Roehlder, Taylor, & Culfear, 2015). Adolescents with ID seemed to learn better from visual materials, visual activity schedules (Corona et al., 2016), audiobooks, TV shows, roleplaying activities, pantomime-style theatre (Löfgren-Mårtenson, 2012), and visual aids (Tissot, 2009). Specifically, Picture Exchange Communication System (PECS) and visual pictures depicting steps (jigs) were found to be effective in non-verbal adolescents with ID (Tissot, 2009). ...
... However, studies show that some parents prevent schools from delivering sexuality education and delay informal RSE until their children display what are perceived as problematic sexual behaviours (McConkey and Ryan, 2001;Tissot, 2009;Rohleder, 2010). ...
... Parents' attitudes are critical for constraining or facilitating children's access to social experiences and relationships, which are the basis of RSE (Johnson et al, 2002;Brown and Pirtle, 2008). Social opportunities help develop a person's sexual identity (Tissot, 2009) as does experiencing daily activities independently (Garbutt, 2008), but the constant scrutiny of some parents can prevent even the most basic of social interactions taking place, such as learning to order a drink independently in a café (Kelly, 2005;Tissot, 2009). Children are in a weaker position without such learning opportunities, which are crucial to practising independent decision-making skills, including those essential for giving consent or refusing sexual approaches (Cousins and Milner, 2007;Hollomotz, 2009). ...
... Parents' attitudes are critical for constraining or facilitating children's access to social experiences and relationships, which are the basis of RSE (Johnson et al, 2002;Brown and Pirtle, 2008). Social opportunities help develop a person's sexual identity (Tissot, 2009) as does experiencing daily activities independently (Garbutt, 2008), but the constant scrutiny of some parents can prevent even the most basic of social interactions taking place, such as learning to order a drink independently in a café (Kelly, 2005;Tissot, 2009). Children are in a weaker position without such learning opportunities, which are crucial to practising independent decision-making skills, including those essential for giving consent or refusing sexual approaches (Cousins and Milner, 2007;Hollomotz, 2009). ...
Article
The foundations of relationships and sex education for children with special educational needs and disabilities (SEND) develop at home. This paper explores how health visitors can enable parents to structure the home environment to support learning about puberty and other relationship/sexuality issues. Legislation will be introduced in England in 2020 to make relationships and sex education (RSE) mandatory across all schools. Liaison with families is one key element of addressing RSE, the foundations of which are established informally at home. Some unique issues for families of children and young people with SEND are broached in this paper.
... . Malheureusement, tout comme les personnes présentant une déficience intellectuelle, les droits entourant les besoins et l'expression sexuels des personnes présentant un TSA ont été historiquement bafoués (Galluci et al., 2005;Tissot, 2009;Van Bourgondien et al., 1997). Selon Kijak (2011), les personnes ayant des besoins particuliers sont laissées dangereusement dans l'ignorance en ce qui concerne la sexualité. ...
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La sexualité des personnes ayant un trouble du spectre de l'autisme est devenue un sujet d'intérêt croissant. Bien que ces individus expriment l'intérêt de former des relations et de s'engager dans des contacts de nature sexuelle, plusieurs études rapportent qu'ils n'auraient ni les connaissances psychosexuelles ni les aptitudes sociales nécessaires pour répondre à leurs besoins. Ces déficits sont d'ailleurs des facteurs de risque importants pour développer ou être victime de comportements sexuels inappropriés. Bien que des recherches soulignent l'importance de l'éducation sexuelle pour ces adolescents et que des programmes conçus à cette fin ont montré des résultats prometteurs, aucune synthèse n'a tenté de préciser l'efficacité de ces programmes. Cette méta-analyse vise à recenser et combiner les études primaires ayant évalué l'efficacité d'intervention portant sur le développement sexuel auprès de personnes ayant un TSA de niveaux 1 et 2 à partir de la documentation publiée et non publiée de 1990 à 2018. Après un examen approfondi de diverses banques de données, cinq études mesurant l'efficacité de ces programmes ont été retenues selon les critères d'inclusion de la revue systématique (n = 131). Globalement, l'efficacité de ces interventions est d'ampleur élevée sur l'augmentation des connaissances psychosexuelles (d = 0,803; p < 0,001; (IC 95% [0,441, 1,165]) et l'âge n'était pas un prédicteur du niveau d'efficacité des programmes (pente : 0,42, p = 0,15, IC 95% [−0,15, 0,98]). Davantage de recherches évaluant l'efficacité de ces programmes seraient nécessaires afin d'identifier certaines lignes directrices menant à l'élaboration de programmes qui soient fondées sur des données probantes. Brève déclaration d'intérêt public Les pratiques permettant de mieux soutenir l'éducation à la sexualité des jeunes ayant un TSA sont encore peu connues. Le développement et la mise en place de ces pratiques doivent faire l'objet de validation par des projets de recherche tant au niveau de leur efficacité que de leurs fondements. Brief public significance statement Practices to better support sexuality education for youth with ASD are still not well known. The development and implementation of these practices must be validated by research projects both in terms of their effectiveness and their foundations.
... Gougeon [50], in their critical review about sexuality of individuals with ASD, highlights that Griffin-Shelley [51] focuses on sexual deviancy, Gallucci et al. [52] talk about gender identity by observing it as a problem of obsessive-compulsive disorder, while Tissot [53] is proposing sexual identity education as a solution to an exhibition of sexual behaviors of individuals with ASD. In reality, it is unclear whether or not adolescents with ASD are aware when they exhibit inappropriate sexual behavior. ...
Article
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The complexities of living with Autism Spectrum Disorder (ASD) can derail an adolescent’s opportunity to engage in healthy sexual relationships. Social connection, a large component of healthy sexual relationships, is often a major obstacle for adolescents diagnosed with ASD. Sexual health goes beyond the physical component and relies on emotional and social skillsets that directly influence appropriate sexual behaviors and connection with others. The concept of appropriate psychosexual norms is quite important and can be adopted by exposing adolescents with ASD to social environments that form healthy interactions with others. The sexual behavior of adolescents with ASD is often observed from a problem-based perspective rather than a strength-based approach. There is a lack of evidence-based sexual education curriculums geared towards the needs of adolescents with ASD which bring closer together the dynamical relationship between sexual socialization and sexual behavior. Therefore, the purpose of this conceptual paper is to describe that dynamic relationship and how inadequate sexual socialization often leads to socially “inappropriate” sexual behaviors of adolescents with ASD. Full text: https://rdcu.be/b54ry
... To that end, we could identify only one curriculum designed for adolescents on the autism spectrum [41,42]. Existing programs for individuals with developmental disabilities more broadly [43,44], and evidence-based dating and sexuality skills interventions for adolescents without ASD [45][46][47], may provide a starting point for adaption. However, the social communication difficulties that are a hallmark of autism spectrum disorder [34]-which can lead to fewer social relationships and a reduced ability to understand the complex information conveyed by others-likely impact the ability of adults on the autism spectrum to engage in functional romantic and sexual relationships across all levels of the IMB framework. ...
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Adults on the autism spectrum report comparable levels of desire for sex and sexual satisfaction as adults who are not on the spectrum. However, there has been little empirical focus on the need for sexual and relationship-oriented education for youth on the spectrum as they transition to adulthood. In this review, we use the Information–Motivation–Behavioral Skills Model of sexual health behavior change as a lens through which to understand the experiences of adults on the autism spectrum. We present those insights infused with emerging data and best practices in the field. Overall, it appears clear from the extant literature that providers need to recognize the specific characteristics of autism when developing sexual education curricula. Specifically, the social communication and sensory profile of people on the autism spectrum appears to interact with access to information, motivation to engage in healthy sexual activities, and the development of skills needed to engage in healthy sexual behavior. Finally, the voice of adults on the spectrum is essential to guide the emerging understanding of healthy sexuality.
Article
Background This review focused on how sexual consent ability was determined, managed, and enhanced in people with cognitive disabilities, with the aim of better understanding the recurring themes influencing the design and implementation of these approaches. If a person’s consensual ability becomes compromised, owing to either an early or late-onset cognitive disability, the formal systems involved must establish plans to balance the individual’s rights and restrictions on sexual expression. This review identified these plans, focusing on how they promoted the intimacy rights of the individual. Objective This study aims to identify approaches that determine sexual consent ability in people with cognitive disabilities, identify the means of managing and enhancing sexual consent ability in people with cognitive disabilities, and note the recurring themes that influence how these approaches and management systems are designed and implemented. Methods A systematic literature review was performed using EBSCOhost (Social Gerontology, CINAHL Plus, MEDLINE, and SocINDEX), Embase, PsyInfo, and Scopus to locate reports on terms expanded on sexual consent and cognitive disability. Results In all, 47 articles were identified, featuring assessment practices, legal case studies, and clinical standards for managing sexual consent capacity in people with cognitive disabilities. A total of 8 studies (5/8, 63% qualitative and 3/8, 38% quantitative) were included out of the 47 articles identified. Approaches for determining sexual consent included functional capacity and person-centered, integrated, and contextual approaches. Management of sexual consent ability included education, attitude, and advanced directives and support networks. The recurring themes that influenced these approaches included the 3 legal criteria of consent, American Bar Association and American Psychological Association Model, Lichtenberg and Strzepek Instrument, Ames and Samowitz Instrument, Lyden approach, Mental Capacity Act of 2005, and Vancouver Coastal Health Authority of 2009. Conclusions Determining sexual consent takes a holistic approach, with individuals judged in terms of their adaptive abilities, capacities, and human rights. The attitudes of those using this holistic approach need to be balanced; otherwise, the sexual rights of assessed people could be moved either in favor or against them. The ideal outcome, after person-centered considerations of those living with cognitive disabilities includes the people themselves being involved in the process of personalizing these approaches used to facilitate healthy intimate relationships.
Article
Accessible summary • Quality sex education is important for all students. It also helps with a successful transition to life after school. • We talked to 11 Australian high school girls with intellectual disability. We wanted to know what they think about their sex education at school. • The girls told us that they were often not included in Individual Learning Plan meetings. They were also not consulted about what they would like to learn in sex education. • Sex education classes were largely inaccessible for them. • Accessible sex education classes are important to prepare students for life after school. Abstract 1.1 Background Students with intellectual disability often do not receive holistic sex education, which is critical for their successful transition to post-school life, including having an ability to make healthy choices about their sexuality and relationships. The aim of this inclusive research study was to explore the perceptions and experiences of sex education with Australian high school girls with intellectual disability, as they prepare for a transition to post-school life. 1.2 Method There were 11 high school girls aged 13–20 years who participated in this study. Interviews were conducted and analysed using inductive content analysis. 1.3 Findings The findings indicate that critical topics such as gender and sexual identity, and masturbation are not sufficiently covered in sex education in New South Wales, Australia. The participating girls also highlighted ways in which teachers could make sex education lessons more accessible. Individual Learning Plan meetings, an important platform for transition planning, were attended by less than a third of the girls in this study. 1.4 Conclusions Comprehensive and accessible programmes on sex education for high school girls with intellectual disability are needed to promote successful transition to an autonomous life for these students.
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A variety of strategies have been used to help children with autism acquire functional communication skills. The Picture Exchange Communication System (PECS) is a unique communication training program that was developed as a means of circumventing some shortcomings associatd with these strategies. A description of the steps within PECS is provided. Long-term group data have indicated that a large proportion of children started on PECS as preschoolers acquire speech. Individual and group data supporting the use of PECS are provided.
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We have paid little attention to gender differences in developmental disabilities aside from the purpose of establishing prevalence. Yet, studying sex differences in the incidence and presentation of developmental disability and mental health disorders may contribute to our understanding of the neural circuitry and neurochemistry of both the normal and the abnormal brain. Furthermore, investigation into gender difference may have practical implications, as we may need to design sex-specific interventions for persons with developmental disability. In this article, we first review sex differences in typically developing children as well as some of the literature on the biology proposed to explain those differences. We then explore differences in prevalence and presentation of several developmental and mental health disorders as they may relate to biological mechanisms–with special attention to autism. Finally, we look at research needs as they relate to sex in developmental disability.
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Masturbation is frequently referenced as a key issue for supporting the sexuality of people with learning disabilities, yet the subject has received little attention in the professional and academic literature. This article provides an overview of masturbation in relation to service responses and user support in sexuality work in learning disability more widely, drawing in evidence and experience from sex education, clinical work and staff training. Issues such as gender, sexuality, culture and consent are addressed and some of the commonly held myths and assumptions about sexuality and masturbation are challenged. The discussion and related suggestions are designed to be of value to service managers and practitioners, particularly those involved in sexuality work and one-to-one support.
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There is general agreement that children with Asperger syndrome have difficulties in social integration with their peers. Our current understanding of the nature of these difficulties is explained and specific strategies are described that are designed to encourage greater competence in the skills that are necessary to achieve effective social integration. While we do not have any clear scientific evidence of whether and how these strategies are successful, they provide a source of ideas for future examination by academic research and provisional remedial programmes for practitioners.
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Clinicians as well as the general public have encountered an increasing amount of information available regarding Asperger's Syndrome (AS) and high functioning autism. While children with Asperger's may have normal verbal intelligence, they are, like other children along the Autistic Spectrum (ASD) and Pervasive Developmental (PDD) disorders, deeply delayed in their understanding of social information. So when they reach adolescence, with its rising social stress, they are doubly lost in negotiating their way through the social complexities of the teenage years. And there is no more confusing issue for young people than sexuality, both in forming their own sexual identity and forging relationships of closeness with appropriate sexual expression. For the clinician, the convergence of the neurobiological impairment of AS and the social confusion of adolescence provides unique challenges for untangling the relative contributions of each factor and for developing treatment interventions that are effective. This challenge is magnified when sexual behavior problems surface in the young person with Asperger's Syndrome. These individuals are faced with an uneven social playing field in which they are constantly trying to catch up with everyone else. A sexual behavior problem adds to their confusion and sense of social rejection. Their odd and unusual manner of engaging in the world can leave others frustrated, which can be interpreted even more as rejection.
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This article examines some of the discourses and practices through which schools produce and regulate student sexual identities. It suggests that schools' ‘official culture’ can be seen as a discursive strategy which identifies a preferred student subject that is ‘non‐sexual’. This preference is communicated through the contradictory nature of discourses and practices which constitute ‘official school culture’ around student sexuality. These discourses work to simultaneously acknowledge student sexuality and position young people as ‘childlike’. Through the tension created by these contradictory positionings, schools can be seen to undermine the kind of sexual agency that young people might access to support their sexual well‐being. It is concluded that schools' deployment of discourses around sexuality produces student sexual positionings that may in fact dilute sexuality education's ‘effectiveness’ (in terms of the production of sexually responsible citizens).
Article
To review the literature on issues surrounding the sexuality of people with moderate to severe learning disability (SLD), and evaluate available assessment and training methods. This research arose from an increasing number of referrals for clinical intervention in the training and education of appropriate social and sexual behaviour in people with moderate to SLD. What became apparent was the lack of suitable materials and assessments, which is significant as a large number of persons with SLD have problems with language, and so require tools and programmes which have enhanced levels of pictorial support. This research was necessary as people with SLD are vulnerable and have been open to emotional and sexual abuse [Ment Handicap Res16 (1993) 193]. Also, the present study was also required to help keep clients safe and reduce their vulnerability. It has been proposed that this should be achieved through providing educative input. An extensive review of the literature revealed that the research on sexuality in SLD was limited. Furthermore, where research had been conducted, poor methodology or validation issues were common, and materials appeared overly complicated for clients with moderate to SLD. Further research into the development and validation of assessment tools and training programmes which increase appropriate sexual behaviours is urgently required.