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Establishing a sexual identity
Abstract
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.
... Haracopos (1995) tarafından OSB'li 81 katılımcıyla yapılan araştırmada OSB'li bireylerin %74'ünün uygunsuz mastürbasyon veya başkalarına karşı cinsel eğilim gösteren davranışlar sergiledikleri ortaya çıkmıştır. OSB'li bireylerde mastürbasyon gibi otomatik olarak uyarılan ve kendini pekiştiren davranışların düzenlenmesi zor olabilir (Tissot, 2009). Koller (2000) mastürbasyonu bastırmak ve cezalandırmak yerine bunun normal bir gereksinim olarak algılanıp uygun bir şekilde sergilenmesi için çaba harcanması gerektiğini ifade etmektedir. ...
... Aileler ise genel olarak çocuklarının cinsel gereksinimlerini nasıl karşılayacaklarını bilmemekte ya da cinsel eğitimin çocuklarında cinselliğe yönelik bir ilgi oluşturmasından endişe duydukları için cinsel eğitimden kaçınmaktadır. Bazı ailelerin ise çocuklarının cinselliğe ilişkin gereksinimleri olduğu konusunda farkındalık düzeyleri düşüktür (Dewinter ve diğerleri, 2016;Tissot, 2009). Corona ve diğerleri (2016) tarafından yürütülen çalışmada eğitim programına katılan ailelerin diğer ebeveynlerle iletişim kurmaları, çocuklarının cinsel gelişim gereksinimlerini ve bu süreçte yaşadıkları zorlukları paylaşmalarının onlara iyi geldiğini ifade etmeleri çalışmanın vurgulanan bulgularından biri olmuştur. ...
... Parents are also worried about giving their children sexual education. The parents stated that giving sexual education to children with ASD during puberty may create an interest in sexuality and increase sexual behaviors (Tissot, 2009). ...
Cinsel eğitimin, cinsiyet farkındalığı, duyguların uygun biçimde ifade edilmesi, sağlık, hijyen, cinsel kimliğe uygun cinsel davranışları anlama ve bunlara uygun davranışlar sergileme, mahremiyet ve istismardan korunma gibi geniş bir yelpazede ele alınabilecek davranışları kapsayan bütüncül bir yaklaşımla ele alınması önerilmektedir. Bu bileşenler dikkate alındığında otizm spektrum bozukluğu (OSB) olan bireyler için cinsel gelişim alanı eğitsel anlamda geniş bir kapsamla ele alınması gereken bir alandır. Bu alanyazın inceleme çalışmasında, cinsel gelişim dönemleri, OSB olan bireyler için cinsel eğitimin önemi, OSB’nin karakteristik özelliklerine bağlı olarak ortaya çıkan güçlükler, cinsel eğitim süreçlerinde OSB olan bireylerin özelliklerine uygun biçimde kullanılabilecek müfredat içerikleri, öğretim uygulamaları ve bu konuya ilişkin yayımlanmış araştırma örnekleri ele alınmıştır.
... 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. ...
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.
... Most parents and teachers said they faced problems while teaching their children about their body organs. Every human has a unique body type and potential (Crawley et al., 2008), and individuals must understand the difference between public and private body parts and activities (Tissot, 2009). Therefore, children with ASD and ID should be taught about public and private body parts and spaces. ...
This article details the process of identifying the Comprehensive Sexuality Education (CSE) contents for children and adolescents with Autism Spectrum Disorder (ASD) and Intellectual Disabilities (ID) while developing a resource booklet for teaching them CSE-related matters in the Nepalese context. People with disabilities are prone to misconceptions and stigma. Likewise, children and adolescents with ASD and ID face an increased risk of exploitation and abuse. Hence, they all deserve equal access to high-quality sexuality education. Nepal's policy supports inclusive education for learners with disabilities, but its implementation is interrupted due to many issues and obstacles. Therefore, this study aimed to create a CSE resource booklet for Nepalese children and adolescents with ASD and ID, analyzing global sexuality education teaching situations and comprehending the expectations of parents and teachers. The research involved searching documents, conducting focus group discussions with nine teachers and parents of adolescents with ID and eight teachers and parents of adolescents with ASD, and interviewing two teachers and two parents of both categories. The literature reviewed primarily focused on providing body information, appropriate sexual behaviors, relationships, safety, and hygiene. Focus group discussions and interviews revealed that guidance on sexual behavior, self-care, relationship identification, preventing sexual abuse, and menstrual hygiene management are also essential for Nepalese children and adolescents with ASD and ID. The teachers' resource booklet for teaching sexuality education to children and adolescents with ASD and ID was proposed to include seven main topics and 19 sub-topics, specifically focusing on the Nepalese context for the first time in Nepal.
... Η βιβλιογραφική έρευνα αναδεικνύει ότι η σεξουαλική εκπαίδευση εφήβων με ΔΑΦ συνιστά ένα πεδίο που τα τελευταία χρόνια έχει προσελκύσει το επιστημονικό ενδιαφέρον πολλών ερευνητών/τριών (Γενά & Γκόγκος, 2017). Επιπρόσθετα, έχει αποδείξει ότι οι έφηβοι/ες, μέσω προγραμμάτων σεξουαλικής εκπαίδευσης, αυξάνουν τις γνώσεις τους για τη σεξουαλική υγεία (Mellanby et al., 1995), βελτιώνουν τις σεξουαλικές γνώσεις και δεξιότητες, ενισχύουν τη σεξουαλική αυτοδυναμία (Dekker et al., 2015· García-Vázquez et al., 2020· Visser et al., 2017 και, επιπρόσθετα, μειώνουν τις ανεπιθύμητες (Tissot, 2009) και τις μη κοινωνικά αποδεκτές συμπεριφορές (Stokes et al., 2007). ...
Η εφηβεία αποτελεί μία κρίσιμη αναπτυξιακά περίοδο κατά την οποία τόσο τα άτομα με Διαταραχή Αυτιστικού Φάσματος (ΔΑΦ) όσο και οι οικογένειές τους έρχονται αντιμέτωπα με δυσκολίες που σχετίζονται με τη σεξουαλική τους ανάπτυξη και αναζήτηση. Το διάστημα αυτό αποτελεί και την αφετηρία για την εμφάνιση νέων μη κοινωνικά αποδεκτών συμπεριφορών, οι οποίες δυσχεραίνουν ακόμα περισσότερο την καθημερινότητα των ατόμων με ΔΑΦ και των οικείων τους. Συνεπώς, κρίνοντας αναγκαία τη σεξουαλική τους διαπαιδαγώγηση, η συγκεκριμένη έρευνα χρησιμοποίησε ένα πειραματικό μοντέλο σχεδίασης με στόχο τη σύνθεση, την εφαρμογή και την αξιολόγηση ενός διδακτικού προγράμματος παρέμβασης για εφήβους/ες με ΔΑΦ. Στόχος του προγράμματος παρέμβασης ήταν η ανάπτυξη σεξουαλικών γνώσεων και σεξουαλικής συμπεριφοράς σε έφηβους/ες με ΔΑΦ στον χώρο του σχολείου και στον χώρο της οικίας τους. Το δείγμα ήταν συνολικά 33 άτομα: 20 έφηβοι/ες με διάγνωση ΔΑΦ, 10 γονείς, 2 κοινωνικοί λειτουργοί και 1 εκπαιδευτικός δευτεροβάθμιας εκπαίδευσης. Τα μέσα συλλογής δεδομένων που χρησιμοποιήθηκαν ήταν δομημένη συνέντευξη, συμμετοχική παρατήρηση και ένα άτυπο κριτήριο αξιολόγησης σχεδιασμένο για τις ανάγκες του προγράμματος. Η ανάλυση των δεδομένων ήταν μικτή (ποιοτική και ποσοτική) και ανέδειξε τη θετική επίδραση του συγκεκριμένου προγράμματος παρέμβασης στους/στις συμμετέχοντες/ουσες, οι οποίοι/ες αύξησαν τις σεξουαλικές τους γνώσεις, μείωσαν την εμφάνιση ανεπιθύμητων συμπεριφορών, διέκριναν τους όρους ιδιωτικός και δημόσιος χώρος, περιόρισαν τις σεξουαλικές τους συμπεριφορές κυρίως στον ιδιωτικό τους χώρο και παράλληλα, άρχισαν να τηρούν με συνέπεια τους κανόνες υγιεινής. Ως εκ τούτου οι έφηβοι/ες με ΔΑΦ έγιναν πιο λειτουργικοί/ές στον χώρο του σχολείου και της οικίας τους, με αποτέλεσμα να βελτιωθεί η ποιότητα ζωής όλης της οικογένειας και να τονιστεί εκ νέου η αξία της εφαρμογής αποτελεσματικών προγραμμάτων σεξουαλικής εκπαίδευσης σε άτομα με ΔΑΦ.
... In order to address these issues, several programs have been set up around the world [4,6,19,20]. However, given the complexity that ASD brings to the learning and development of sexuality, many of these programs do not sufficiently address the issues that these young people experience. ...
Sexuality and intimate relationships are topics of interest to adolescents and young adults with Autism Spectrum Disorder (ASD). However, their situation sometimes puts them at risk of being abused or developing self-harming behaviors. The purpose of this article is to develop a toolkit to support sexuality, sexual health, and sustainable sexual practices in youth with ASD. A Multimethod study based on a co-creation approach was used. Interviews were conducted with youth with ASD over the age of 18, with practitioners in a specialized setting, and with school-based practitioners in order to gain access to the different needs and expectations that they may have. Both practitioners and youth seem to agree that the lack of knowledge of youth with ASD is what most hinders their sexual development, followed by their social difficulties. They need access to the basics of sexuality in order to prevent the development of inappropriate behaviors at an early age. The kit could be used as early as age 12. The teaching methods chosen for the toolkit seems to be an adequate way to meet the need for access to basic information about sexuality for young people with ASD. The modalities also seem to be appreciated by both youth and specialist, particularly the use of custom-made pictograms. The toolkit created is a good starting point in bridging the knowledge gap for youth with ASD about sexuality. It would also lessen the burden placed on the various practitioners to do this teaching when they may not all be comfortable.
... There are many calls to increase SRE resources and programming for autistic individuals (e.g., Gerhardt, Cauchi, & Gravino, 2022;Wilczynski, Sundberg, Miller, & Johnson, 2022) yet there are a limited number of evidence-based SRE curricula for autistic individuals. Many studies are small but the conclusions are generally promising; that autism-specific SRE results in positive psychosexual outcomes (Pask et al., 2016;Tissot, 2009). One of these is the Tackling Teenage Training (TTT; Dekker et al., 2015;Visser et al., 2017), which was shown in a randomized control trial to improve psychosexual functioning for autistic teens using parent and self-report. ...
Despite the established need for sexuality and relationship programming for autistic adults, there are extremely limited curricula for this population. This pilot study used an evidence-based sexuality and relationship education program for autistic adolescents (Tackling Teenage Training) as the basis for an adult-focused virtual psychoeducational group. Qualitative feedback, quantitative ratings of the programming, and behavioral surveys from participants were collected. Nine participants completed the program, and corresponding pre and post measures. Highly rated topics, for example gender identity and online dating, were consistent with previous research on what autistic adults want from a sexuality and relationship education program. Future programming should incorporate increased attention to themes and topics highlighted by participants, and should utilize the teaching tools (e.g., role play, peer discussions) identified as useful by the participants.
... Some parents are hesitant to support their child in establishing a sexual identity in case their child's sexual interest and activity consequently increase. However, the literature does not support this assumption (Tissot, 2009). ...
The association between autism spectrum disorder (ASD) and subsequent sexually transmitted infections (STIs) and the potential effects of medications on STI risk remain unknown. In all, 5076 adolescents and young adults with ASD and 57,060 age-/sex-matched individuals without ASD were enrolled between 2001 and 2009 and followed-up to the end of 2011 for identification of subsequent STIs. The results revealed that patients with ASD were prone to acquiring an STI [hazard ratio (HR) 3.36] compared with the comparison group. Long-term use of atypical antipsychotics was associated with a lower risk of acquiring an STI later in life compared with nonuse (HR 0.34). We recommend that clinicians closely monitor risky sexual behaviors and STI risk in patients with ASD.
The United Nations Convention on the Rights of Persons with Disabilities (CRPD) supports several rights that relate directly to sexuality. In spite of this, those with intellectual and developmental disabilities (IDD) have poor sexual health outcomes, including increased risk for sexually transmitted infection, unplanned pregnancy, and sexual abuse. Further, those with IDD express a desire for intimate relationships. Accessible, inclusive, comprehensive sexual health education can improve these outcomes. This education can be provided by a number of people, including, but not limited to, parents or caregivers, peers, educators, and health providers. Strategies to support education include Universal Design for Learning, videos, visuals, modeling, role playing, and digital interventions. Educators should evaluate outcomes of sexual education in the areas of sexual knowledge, attitudes, and skills to ensure the strategies they utilize are effective for the specific individual(s) with whom they are working. Research suggests utilization of accessible, inclusive, comprehensive sexual health education, while incorporating the above-mentioned strategies, has the potential to improve sexual knowledge, attitudes, and skills, as well as to improve sexual self-advocacy and support the sexuality-related rights articulated in the CRPD.
While challenges with social communication are a defining feature of autism, there is an unfortunate, common misconception that autistic individuals are uninterested in interpersonal relationships. However, many current studies show that autistic individuals are very interested in developing friendships, romantic relationships, and close connections with loved ones (Geradi et al., 2021). However, many issues, such as living conditions (e.g., independent vs. residential), extent of autistic characteristics, level of communication, and socialization that differ from cultural norms may play a role in successful relationships and sexuality (Geradi et al., 2021; Mehzabin and Stokes, 2011). In regard to education and general knowledge, very few sex and relationship education programs are empirically validated, and the outcomes of these programs are lacking for autistic individuals. Most available programs for individuals with disabilities cover biological information and self-awareness and safety, with fewer, unfortunately, covering personal sexuality and relationships (Sala et al., 2019). Additionally, most programs implemented specifically for autistic individuals are for verbal individuals or with a tested verbal IQ above or equal to 75 (Sala et al., 2019). Thus, as a whole, sex and relationship education differ greatly from that provided to neurotypical students, with individuals with disabilities receiving far inferior levels of support and guidance in this area (Joyal et al., 2021; Koller, 2000). The literature also suggests that this population demonstrates different challenges with a wide variety of sexuality-related issues, including their bodily changes during puberty, privacy rules and customs, and masturbation. As well, sensory sensitivities and increased vulnerability can lead to unsuccessful romantic experiences, leading to further isolation (Sibeoni, 2022) which has been largely unaddressed. Adding to the complexity is the fact that adolescents and adults with ASD have far fewer sexual experiences than their neurotypical peers, despite their expressed sexual interest (Hellemans et al., 2010) which can lead to increases in social isolation, decreased learning experiences, and lower self-esteem. Despite these issues and concerns, there continues to be a paucity of research, literature, and education relating to romance and sexuality in individuals with autism spectrum disorders, and while the desire for intimate and sexual relationships may be similar to individuals without autism, education attitudes and practice with this population differ greatly. This chapter will discuss various issues related to romance and sexuality with autistic individuals. In recognition of the changing landscape of language, we have used both person-first and identity-first language in the chapter where sentence structure called for each and in alignment to the language used in the literature cited.
Individuals with disabilities often have limited access to school-based sexuality education (SE). This scoping review identified the characteristics of school-based SE intervention programs implemented for students with disabilities. Six electronic databases were searched for peer-reviewed articles: 30 articles published between 1969 and 2020 met inclusion criteria. Some interventions included children from multiple disability categories ( n = 6) or were unclear about disability diagnoses ( n = 3). Other interventions focused on specific disabilities, including intellectual and developmental disability ( n = 8), learning disability ( n = 4 ), autism ( n = 3), physical disability ( n = 3), emotional disturbance ( n = 2), and hearing impairment ( n = 1). Topics of instruction included comprehensive sexuality education ( n = 8), the human body ( n = 8), safety ( n = 8), hygiene and menstrual care ( n = 6), and social and relationship skills ( n = 5). Few studies addressed students’ intersectional identities.
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.
This PDF has 60 images, with descriptive captions written in Erling and Basic English.
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.
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.
The Complete Guide to Asperger's Syndrome is the definitive handbook for anyone affected by Asperger's syndrome (AS). Now including a new introduction explaining the impact of DSM-5 on the diagnosis and approach to AS, it brings together a wealth of information on all aspects of the syndrome for children through to adults.
Drawing on case studies and personal accounts from Attwood's extensive clinical experience, and from his correspondence with individuals with AS, this book is both authoritative and extremely accessible. Chapters examine: * causes and indications of the syndrome* the diagnosis and its effect on the individual* theory of mind* the perception of emotions in self and others* social interaction, including friendships* long-term relationships* teasing, bullying and mental health issues* the effect of AS on language and cognitive abilities, sensory sensitivity, movement and co-ordination skills* career development.
There is also an invaluable frequently asked questions chapter and a section listing useful resources for anyone wishing to find further information on a particular aspect of AS, as well as literature and educational tools.
Essential reading for families and individuals affected by AS as well as teachers, professionals and employers coming in contact with people with AS, this book should be on the bookshelf of anyone who needs to know or is interested in this complex condition.
‘I usually say to the child, “Congratulations, you have Asperger’s syndrome”, and explain that this means he or she is not mad, bad or defective, but has a different way of thinking.’
- from The Complete Guide to Asperger's Syndrome
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.
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.
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).
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.