The Pennsylvania State University The Graduate School College of Education AUTISM AND SEXUALITY: SELF ADVOCATES FOCUS GROUPS A Thesis in Special Education by Allison F. Fleming © 2015 Allison F. Fleming Submitted in Partial Fulfillment of the Requirements for the Degree of Master of Science December 2015 The thesis of Allison F. Fleming was reviewed and approved by* the following: Pamela Wolfe Associate Professor of Education Thesis advisor David Lee Professor of Education (Special Education) Paul Riccomini Program Coordinator of Special Education *Signatures are on file at The Graduate School ii Abstract: Thirteen individuals who identified themselves as having ASD participated individually or in focus groups to ascertain their ideas about sexuality. Participants were asked to complete a questionnaire related to what types of socio-sexuality topics should be taught to students with ASD in schools. Themes from the focus groups/interviews were coded. Results showed that self-advocates spoke about significance of sex education as well as issues related to the content, delivery and instruction and the presenter. Themes included the need for communication and educational curriculum that emphasized dating and how to handle sexual harassment and intimidation. This study showed the importance of sexuality education for individuals with ASD to increase their knowledge and quality of life. Key words: sexuality, advocacy, sexuality curriculum and sex education iii TABLE OF CONTENTS List of Tables..............................................................................................pg. vi Chapter 1. INTRODUCTION.....................................................................pg. 1 Chapter 2: LITERATURE REVIEW……………………………….…….pg. 6 Individuals with ASD……………………………………………..pg. 6 Sexuality and Disability…………………………….……………..pg. 6 Need for Sexuality Education for Individuals with ASD……..…..pg. 10 Sexuality Education Standards………………………………....…pg. 11 Self-Advocacy…………………………………………………….pg. 15 Self-Advocacy and Sexuality……………………………………..pg. 16 Chapter 3: METHODS……………………………………………………pg. 17 Participants…..……………………………………………………pg. 17 Instrumentation……………………………………………..……..pg. 17 Chapter 4. PROCEDURES…………………………………………..…….pg. 18 Recruitment…………………………….…………………….…….pg. 18 Interview/Focus Groups……………………………………………pg. 19 Data Collection and Analysis………………………………………pg. 20 Chapter 5. RESULTS………………………………………………..……..pg. 21 Demographics……………………………………………………....pg. 21 Need for Sex Education for Individuals with ASD…………...……pg. 22 Past Experiences with Sex Education………………………………pg. 23 Differences in Sexuality Education for Individuals who are high or low on the spectrum…………………..……………………pg. 25 Content of Sexuality Curriculum………………………….…….….pg. 30 The Dating World……………………………….……….…pg. 30 Sexual Harassment and Intimidation……….……….……...pg. 31 Delivery and Instruction of Sexuality Curriculum………..………..pg. 33 Communication……………………………………………..pg. 33 From Whom to Learn about Sex Education…………..……pg. 34 Chapter 6. DISCUSSION…………………………………………………..pg. 35 Need For Sexuality Education……………………………………...pg. 35 Past Sex Education Experience……………….…………………….pg. 36 Differences in sexuality education for individuals who are high or low on the spectrum………………………………………..pg. 37 Content of Sexuality Curriculum…………………………………..pg. 38 Delivery and Instruction of Sexuality Curriculum…………………pg. 39 Recommendations………………………………………………….pg. 41 Implications………………………………………………………...pg. 41 Limitations……………………………………………………....…pg. 42 Future Research……………………………………….……...….…pg. 43 iv Chapter 7: Conclusion………………………………………………………pg. 45 Appendix A: Sexuality Questionnaire………………………………….…..pg. 47 Appendix B: Demographics Sheet………………………………..………...pg. 51 Appendix C: Informed Consent form………………………………………pg. 52 Appendix D: Reimbursement form……………………………………..…..pg.54 References…………………………………………………………………..pg. 55 v LIST OF TABLES Figure 1: Guidelines for Comprehensive Sexuality Education: Key Concepts and Topics Figure 2. Demographics Figure 3: Formal Sexuality Education Figure 4: Educating Individuals who are higher or lower functioning Figure 5: From whom would you most like to hear about sexuality? vi Chapter 1: Introduction Autism Spectrum Disorder (ASD) is one of the most commonly diagnosed developmental disabilities (Sullivan & Caterino, 2008). One in 68 children are estimated to be identified with ASD in the United States (Center for Disease Control, 2014). According to the Diagnostic and Statistical Manual of Mental Disorders (DSM) V (2015), “people with ASD tend to have communication deficits, such as responding inappropriately in conversations, misreading nonverbal interactions, or having difficulty building friendships appropriate to their age. People with ASD may be overly dependent on routines, highly sensitive to changes in their environment, or intensely focuses on inappropriate items…under DSM V individuals must who symptoms in early childhood even if those symptoms are not recognized until later” (p.1). The Diagnostic and Statistical Manual of Mental Disorders is a manual used by clinicians and researchers to identify and categorize mental disorders (America Psychiatric Association, 2013). The Diagnostic and Statistical Manual for Mental Disorders or DSM has recently been updated to the 5th edition. In the 5th edition there has been changes to the diagnosis of Autism Spectrum Disorder. Under the DSM IV, individuals could be diagnosed with four separate disorders: autistic disorder, Asperger’s syndrome, childhood, disintegrative disorder or pervasive developmental disorder not otherwise specified. With the DSM –V, ASD is now an umbrella term for previous four categories. Researchers believe that this will improve the diagnosis of ASD (American Psychiatric Association, 2013). Individuals with ASD have difficulty with communication; tend to respond inappropriately in conversation and misread nonverbal interaction (American Psychiatric Association, 2013). Sexuality is an area of social functioning where these deficits become more pronounced as the individual ages (Tullis & Zangrillo, 2013). According to National 1 Commission of Adolescent Sexual Health (1995), “Human sexuality is comprised of sexual knowledge, beliefs, attitudes, values and behaviors and deals with anatomy, physiology, biochemistry, gender roles, identity, personality, thoughts, feelings and relationships” (p.1). With this definition of human sexuality, increased knowledge of sexuality will not only assists in the development of relationships but also will help increase the quality of life for persons with ASD. Sex education is a priority for individuals with ASD because their lack of understanding of normal sexual behavior; e.g. public masturbation and lack of knowledge of what constituted sexual abuse (Tullis & Zangrillo, 2013). Sexuality is an important attribute of the human experience. It is a complex dimension of human functioning that involves behavior, emotions, and attitudes, which express the need for intimacy, love, and relationships with other people (Lease, Cohen, & Dahlbeck, 2007). Individuals with ASD need sexuality education particularly due to the characteristics described by the American Psychiatric Association in the DSM-V; communication deficits, misreading nonverbal interaction, and having difficult building relationships (American Psychiatric Association, 2013). Myths about individuals with ASD and their sexuality have hindered the spread of information about social and sexuality issues. For example, Cornelius Chipouras, Makas and Daniels (1982) identified myths that may affect the negative perceptions of individuals with ASD and their sexuality including; people with disabilities are asexual, have uncontrollable urges, are dependent and child like, and if a person with ASD has a sexual problem it is because of their disabilities. These myths likely resulted in social isolation and lack of sexual information. 2 Cultural views of sexuality and individuals with disabilities are another barrier that self- advocates have found to hinder their sexuality education. Many teachers do not feel comfortable teaching individuals with disabilities sexuality education (Kalyva, 2013). Educators often are not taught proper procedures to create a safe space for individuals with ASD to explore their sexuality (Morgan, Manci, Kaffar & Ferrerira, 2011). This lack of information may hinder individuals’ ability to explore their sexual orientation. Many individuals assume that people with disabilities are asexual or heterosexual (Thompson, 2002; Cornelius et al, 1982). Creating a safe space for individuals to learn and explore their sexuality is an important job of the educational system. Professional development and teacher education can increase knowledge to educate all individuals specific to their needs (Cornelius et al, 1983). There is often controversy related to the content of sexuality curriculum. There is no universal agreement on what should be taught. In 2011, with a collaboration of multiple health agencies, a National Standard for Sexuality Education was created. These standards outline the minimum and essential core standards that includes anatomy and physiology, puberty and adolescent development, sexual identity, pregnancy and reproduction, sexually transmitted disease and HIV, healthy relationships and personal safety (FOSE, 2011). Tullis & Zangrillo (2012), and Travers & Tincani (2010) investigated different sexuality curriculum. Their findings show that most sexuality curriculum have the same themes, preventing sexual abuse, facilitating relationships, promoting health and hygiene, social development and the “hidden curriculum”. The hidden curriculum are unspoken rules about typical behavior (Bieber, 1994). For example, most individuals intuitively know not to eat onions or other “smelly” foods on a date, do not ask the teacher a question when he or she is scolding another teacher or during a conversation face the speaker and position feet in their direction (Smith-Myles & Simpson, 2001). This unspoken 3 information causes tensions in relationships for many individuals with ASD. It is difficult to learn and generalize the hidden curriculum because of the vast differences based on culture, location, situations, people and age (Smith-Myles & Simpson, 2001). Smith-Myles & Simpson (2001) summarize how to teach the hidden curriculum through direct instruction, and other effective instruction teaching approaches. An important part of most sexuality curriculum is the topic of sexual abuse. The U.S. Department of Health and Human Services (1996) defines sexual abuse as “…a type of maltreatment that refers to the involvement of individuals in sexual activity to provide sexual gratification or financial benefit to the perpetrator, including contacts for sexual purposes, molestation, statutory rape, prostitution, pornography, exposure, incest or other sexually exploitative activities” (p. 31). In 2012, approximately 1 in 6 boys and 1 in 4 girls experienced sexual abuse before the age of 18 (Center for Disease Control, 2012, p. 1). Sullivan and Knutson (2000) found that children with intellectual disabilities are 4 times more likely to be sexually abused. Studies have shown that individuals with disabilities are more vulnerable to sexual abuse because of their dependence of adults, social isolation and lack of sexuality education (Wassink, van Vugt, Moonen, & Stams, 2015). Further, language impairment is an issue when it comes to reporting sexual abuse. Many individuals with ASD have language impairments that can impede their ability to disclose on the abuse (Brownlie, Jabbar, Beitchman, Via & Aida, 2007). Although there are sexual abuse prevention programs available, the research on their success is limited (McEachern, 2012). Some programs teach self-assertiveness and protection skills while others teach awareness of what constitutes sexual abuse and consent (Bruder & Kroese, 2005; Liou, 2014). Given the statistics about abuse and consent, information about sexual abuse, harassment and intimidation should be included in sexuality curriculums. 4