Perspectives on Autism and Sexuality University of British Columbia Research Article Summaries Tina Gunn
PERSPECTIVES ON AUTISM AND SEXUALITY 2 Reason For Choosing Topic I became interested in autism and sexuality after two incidents that occurred at my place of employment. The first incident was overhearing two parents talking about their children who have high functioning autism (HFA) maturing and transitioning to high school. They were discussing how the general sex education class provided in school was not sufficient and they were concerned about their sons being teased or socially excluded. The second incident was during a collaborative planning meeting when the parent of a child with low functioning autism (LFA) was surprised that her son would need or even benefit from sex education. This was particularly concerning for me as her son is currently showing signs of puberty (e.g., attraction to girls in the class and having erections) and he is very compliant with strangers, which increases his risk for exploitation. This parent appreciated us expressing our concerns and chose to work with her priest and behaviour analyst at home due to religious beliefs. I was alarmed by these two incidents and realized that I needed to learn more about sexuality and autism and about adapting and implementing sex education programs in a school setting. The topic of sex and sexuality is a difficult topic for most people to talk about let alone teach to students who have special needs. Since I started working with children with special needs, I have realized that even though these children have cognitive delays their bodies are still developing typically. This, I imagine, could be confusing and perhaps frustrating for them, especially when sex education is typically not included in their programming. Lack of awareness, training, and available resources as well as different cultural and religious beliefs are some barriers to educating students with special needs in the area of sex and sexuality. Unfortunately, this lack of education puts these children at greater risk for sexual exploitation.
PERSPECTIVES ON AUTISM AND SEXUALITY 3 Individual Article Summary: Article #1 Citation Hellemans, H., Colson, K., Verbraeken, C., Vermeiren, R., & Deboutte, D. (2007). Sexual behavior in high-functioning male adolescents and young adults with autism spectrum disorder. Journal of Autism Developmental Disorders, 37, 260-269. Purpose The aim of the article was to examine and describe the theoretical knowledge and application of self-care and socio-sexual skills, the sexual behaviour, and the sexual problems of male adolescents and adults with high-functioning autism living in institutions. Participants The participants were 24 institutionalized male adolescents aged 15-21 years old. All participants had an existing diagnosis of high-functioning autism (HFA). Nine of the subjects were receiving medication (two for sexual problems). All participants were receiving sex education as part of the prescribed curriculum. None of the participants had a history of sexual abuse or other handicaps. Information was obtained from the subjects caregivers. There were 17 caregivers (5 female and 12 male) ranging in age from 23-51 years old. Caregivers were trained and supervised by a psychologist and were involved in giving education in socio-sexual skills. Research Design and Procedure The local ethical committee approved the study, parents gave consent, and then caregivers were interviewed. The Interview about Sexuality and Autism (ISA) was investigatorbased, semi-structured interview that consisted of three parts: (a) knowledge and practice of self-
PERSPECTIVES ON AUTISM AND SEXUALITY 4 care skills and socio-sexual skills, (b) sexual behaviour, and (c) specific ASD features in sexual behaviour. Results Self-care and socio-sexual skills. Participants demonstrated adequate theoretical knowledge in this area. However, actual application of this knowledge was inadequate for a number of the participants. Sexual behaviour. All but one participant showed sexual interest. There were some reports of inappropriate/deviant and potentially harmful sexual behaviour, most of the participants had to be taught appropriate masturbation techniques, and the subjects had difficulties distinguishing desired and undesired contacts. Forty-two percent of the participants expressed a need for a close affective and/or sexual relationship. However, 21% percent felt frustrated about not being able to establish a relationship. Specific ASD features in sexual behaviour. Six subjects demonstrated a specific interest in particular objects that had sexual connotations. Many others had fascinations that could potentially have sexual connotations. Two subjects were fixated on the idiosyncratic characteristics of their partner, one met DSM-IV criteria for pedophilia, and one met the DSM- IV criteria for fetishism. In total, 29% experienced sexual problems that were described as severe. Conclusions The majority of adolescents and young adults with ASD demonstrate an interest in sex and engage in a variety of sexual behaviours. This population is at risk for developing inappropriate/deviant sexual behaviour. Therefore, sex education with an emphasis on empathetic and perspective taking skills, is important. Further research should include (a) a
PERSPECTIVES ON AUTISM AND SEXUALITY 5 larger sample, (b) male and female participants, (c) in home and institutional settings, (d) a control group, and (e) parent and individuals with ASD perspectives. Individual Article Summary: Article #2 Citation Kalyva, E. (2010). Teacher s perspectives of the sexuality of children with autism spectrum disorders. Research in Autism Spectrum Disorders 4, 433-437. Purpose The Purpose of the study is to examine and compare teachers perceptions of sexual behaviours of children with low and high-functioning ASD. Participants Teachers of students with a confirmed diagnosis of ASD completed the questionnaire. There were 56 teachers in total (39 female and 17 male). All teachers had a teaching degree with some additional training in special education. Their teaching experience ranged from 1-17 years. There were 76 students with ASD that the teachers completed questionnaires on (54 boys and 22 girls). Fifty-six of the students had low-functioning autism (LFA) and 20 of them had high-functioning autism (HFA) or Asperger Syndrome (AS). The students ages ranged from 7-14 years old. Research Design and Procedure Teachers were approached and informed of the purpose of the study. If they were interested they were given a questionnaire, which took 20 minutes to complete. Some teachers completed more than one questionnaire depending on the number of students with ASD they taught. The questionnaire was a modified version of the Sexual Behaviour Scale (SBS). The SBS was modified to measure teachers perceptions. The questionnaire measured five aspects:
PERSPECTIVES ON AUTISM AND SEXUALITY 6 (a) social behaviour, (b) privacy, (c) sex education, (d) sexual behaviour, and (e) teacher concerns. The questionnaire included a section to report demographic information, the time and nature of the child s diagnosis, if there is a presence of comorbidity, and whether or not the teachers felt they were able to provide sex education to children with ASD. Results A multiple analysis of variance (MANOVA) was used to examine the two groups across the five dependent variables. The MANOVA showed (a) children with HFA demonstrated more socially accepted behaviour, (b) children with LFA demonstrated less privacy seeking behaviour and were less aware of privacy related rules, (c) children with HFA had a better understanding of sexuality issues and received more sex education, (d) children with LFA have a history of less appropriate sexual behaviours and decreased knowledge of typical sexual responses, and (e) teachers expressed more concern for children with HFA. Only seven teachers (12.5%) felt confident they could provide sex education to children (male or female) with ASD. Conclusions Individuals with ASD with average intelligence are more likely to partake in social interaction and have an increased opportunity for sexual experiences, which explains the increased concern. However, sex education for all children with ASD should be a priority regardless of their level of functioning. Children with ASD have a decreased ability to judge the appropriateness of social situations, they engage in inappropriate sexual behaviours, and are at risk for exploitation. Therefore intervention programs need to be developed and implemented to address individual differences. School is a social context and teachers need to be prepared (i.e., trained) to provide appropriate sex education and opportunities for their students with ASD to practice subtle rules of social interactions.
PERSPECTIVES ON AUTISM AND SEXUALITY 7 Individual Article Summary: Article #3 Citation Stokes, M. A. & Kaur, A. (2005). High-functioning autism and sexuality: A parental perspective. Sage Publications and The National Autistic Society 9(3), 266-289. doi: 10.1177/1362361305053258 Purpose The purpose of the study was to compare sexual behaviours and experiences of individuals with HFA to their typically developing peers across five domains: (a) social behaviour, (b) privacy, (c) sex education, (d) sexual behaviour, and (e) parental concerns. Participants Participants included parents of typically developing children (n=51) and parents of children with HFA or AS (n=23). Among the children, there were 33 males and 17 females in the typically developing group and 17 males and 6 females in the HFA group. All children were between the ages of 10 and 15. Twenty-six percent of the HFA group also had a diagnosis of Attention Deficit Disorder (ADD). Research Design and Procedure Parents of the typically developing children were approached on sports grounds and in shopping centres and asked to participate in the study. Parents of the children with HFA were recruited through autism support network meetings. Information about the study was provided and if the parents agreed to participate and met the criteria (i.e., had a child between the ages of 10 and 15 with HFA) for participation they were given a questionnaire to be completed and mailed in. The Sexual Behaviour Scale (SBS), developed specifically for this research, was used for the survey.
PERSPECTIVES ON AUTISM AND SEXUALITY 8 Results A MANOVA was used to determine differences between the two groups on the five domains and an analysis of covariance (MANCOVA) was used to control for age, gender, and social behaviour variables. The analysis revealed that adolescents with HFA scored lower than typically developing peers on all five domains. Both groups showed improvements in privacy, privacy behaviour, and sexual behaviour with age indicating that developmental rate was not differentiated. However, there were different levels in development: Children with HFA displayed more inappropriate behaviours at any given time during their development. Parents of children with HFA had more concerns as their child aged, whereas parents of typically developing children had fewer concerns. Conclusions The results of the study indicate that there is a difference between typically developing adolescents and adolescents with HFA regarding sexual behaviour that coincides with the diagnostic criteria of their disorder. Adolescents with HFA tend to display poorer social behaviours and more inappropriate sexual behaviours. They engage in fewer behaviours related to privacy, have poorer knowledge regarding privacy issues, and have less sex education. Additionally, this research reveals the profound concerns that parents of adolescents with HFA have for their children. (Stokes & Kaur, 2005, p. 281). Specialized sex education programs for adolescents with HFA need to be developed and implemented. These programs should incorporate and emphasize social skill development. It is pertinent that individuals with HFA learn how to modulate their behaviour so they can experience an improved overall quality of life. Future research should be done with a larger sample to check for generalizability and an assessment of social validity should be completed on the SBS.
PERSPECTIVES ON AUTISM AND SEXUALITY 9 Overall Summary Comparisons Two of the studies used a survey, which was completed by the participants then returned to the researchers at a later date. The Stokes & Kaur (2005) and the Kalyva (2010) studies both used the Sexual Behavioural Scale (SBS), which was developed by Stokes and Kaur specifically for their 2005 study. Modifications were made to incorporate teachers perspectives in the Kalyva (2010) study. Hellemans et al. (2006) used an investigator-based, semi-structured interview that was specifically designed for the study. Completing the survey as an interview allowed the investigators to explore answers qualitatively when necessary. Each study focused on a different perspective. The Hellemans et al. (2006) article focused on the perspectives of caregivers of young male adults with HFA in an institution, while the Kalyva (2010) article looked at teachers perspectives, and the Stokes & Kaur (2005) article examined a parental perspective. Given that different perspectives were examined and described this indicates that sexual behaviour of children and young adults with ASD occurs across different settings: home, school, and institutions. Unfortunately, none of the studies directly examined the perspectives of the individuals with ASD, which may be an area for future research. Two of the studies, Stokes & Kaur (2005) and Kalyva (2010), targeted adolescents, aged 10-15 and 7-14 respectively. Whereas, the Hellemans et al. (2006) study focused on young adults aged 15-21. None of the studies looked at the sexual behaviour of older adults living with ASD. Parents and teachers expressed concern for their children/students with ASD in regards to their sexual development. In the Kalyva (2006) study, teachers expressed greater concern for
PERSPECTIVES ON AUTISM AND SEXUALITY 10 students with HFA than for their students with LFA, as they are more likely to engage in social interactions and therefore have increased opportunities for sexual experiences. It can be interpreted that there was concern for the young adult males living in the institution since sex education was part of the prescribed curriculum prior to the study and two of the males were receiving medication for their inappropriate/deviant sexual behaviour. All three studies concluded that individuals with ASD show an interest in sex and engage in sexual behaviours. It is evident from these studies that there is a need for specialized sex education programs that have a focus on developing social skills for individuals with ASD as they are at risk for developing inappropriate/deviant sexual behaviour. Additionally, individuals with ASD are at greater risk than their typically developing peers for exploitation. Sexuality and autism is an area that requires further attention and more research should be done to gain a better understanding. Implications for Integration Support Teachers (ISTs) ISTs are responsible for writing Individualized Education Plans (IEP) in collaboration with parents, classroom teachers, special education assistants (SEAs), and other professionals for students with low incident special needs. In an IEP for a student with ASD there should be goals addressing the student s behaviour, social development, communication skills, motor skills, and cognitive development (academics). Where possible, goals addressing parent and teacher concerns about the child s developing sexuality and social skills should be discussed explicitly and agreed upon. ISTs should be aware that there might be differing cultural and/or religious beliefs and sensitivity and respect should be used when addressing concerns. Parental permission must be obtained before implementing any (regular, adapted, or modified) sex education program in the public education system.
PERSPECTIVES ON AUTISM AND SEXUALITY 11 Once IEP goals are established, it is the responsibility of the IST to provide resources to the parents and the teacher and to provide guidance and support so programs are implemented with fidelity. ISTs, not well versed in this topic, will have to do independent research and seek professional development to become knowledgeable. As an IST, I was having concerns about several of my students regarding this topic. These articles were valuable in confirming my concerns were legitimate. These articles also confirmed further work needs to be done on my part to ensure that my students have access to specialized sex education programs that have an emphasis on social skill development. Future Research All three articles conclude that specialized sex education programs with a focus on social skill development need to be developed. Additionally, these programs should be implemented on a regular basis and studied for effectiveness. I agree with this conclusion, as I was unable to find any studies that utilized an experimental design to test the effectiveness of sex education programs for individuals with ASD. I believe that further research needs to be done on interventions that are developed for individuals with LFA and HFA. When looking for resources for my students, I found substantially more material (e.g., social stories, story books, and a curriculum) for students with HFA, which left me to the difficult task of developing and adapting materials to meet the needs of my students with LFA. I believe future research should examine a variety of specialized sex education programs (for individuals with LFA and HFA) implemented by teachers, caregivers, and parents over an extended period of time (i.e., from childhood into adulthood) to determine the overall impact on quality of life for the individuals with ASD. These interventions should be assessed for social validity by parents, teachers, and caregivers, and most importantly by individuals with ADS.