ASA's 36th National Conference on Autism Spectrum Disorders (July 13-16, 2005)

• Recorded Presentation

• Many children with developmental disabilities (e.g., children with ASDs) develop physically in the same way as their typical peers (Adams, & Sheslow, 1983; DeMeyer, 1979; Schroeder, LeBlanc, & Mayo, 1996). • Youth and adolescents with developmental disabilities need to understand physiological changes that occur during puberty. • Youth and adolescents need to understand personal sexual safety issues relevant for their age and developmental level (e.g., STDs, sexual health, doctor's visits, birth control). • Children with developmental disabilities are at greater risk for exploitation than their peers (Sobesy, 1994) and need to learn prevention skills (e.g., body parts, personal information, responding in an emergency, personal space and boundaries, privacy). • Sexuality education involves an important social/relationship component and is embedded in social experiences (e.g., social skills, friendships, intimacy, boundaries, respect, emotions). • Contrary to general beliefs, individuals with developmental disabilities are less likely to engage in inappropriate / dangerous behavior when provided with education about sexuality and relationships.

Evidence based, developmentally appropriate sexuality education may be critical for maintaining the well-being and healthy development of children with disabilities.

Despite its importance, issues of sexuality and sexuality education for youth with developmental disabilities has received less attention in the literature than is warranted (NICHYD, 1992). Even less work has been done to understand issues related to sexuality and sexual education for children and adolescents with autism spectrum disorders (ASD; Henault, 2004; Koller, 2000). Though the issues have not yet been explored in the literature, individuals with ASDs may be at an even greater disadvantage due to the core difficulties they experience with social reciprocity and social understanding. For these reasons, risk of exploitation may also be higher; recognizing “red flags” of dangerous situations and interpreting the thoughts, feelings, intentions, and behavior of others can be particularly challenging for individuals with ASDs. Youth with ASDs present with unique challenges that are relevant for the interpretation of apparent sexual behavior and for teaching about sexuality. Specialized interventions are no doubt necessary, considering the sensory issues, deficits in social understanding, restricted interests and repetitive/self-stimulatory behaviors observed in many children on the autism spectrum. In addition, a child's learning style is also important to consider when selecting appropriate educational strategies. For persons with ASDs, curricula may need to emphasize visual supports as well as specific plans for skill generalization.

Understandably, parents of children with developmental disabilities are often apprehensive of teaching about sexuality or are unsure about how to respond to their child's emerging sexual behaviors, particularly if they are engaging in inappropriate behaviors, such as violating personal boundaries (Hingsburger, 1995). It is generally accepted that sexuality needs to be taught within the context of human relationships (SIECUS, 1996), and that parents are the most important and best sex educators for their children (Gossart, 2002). Working with parents concerning their child's sexuality is a very sensitive aspect of a parent-professional relationship (Kempton, 1993). Better understanding of parents' beliefs, wishes, and concerns, and how best to meet families' needs will facilitate a shared view towards change founded on a trusting relationship (Johnson & Kempton, 1981). To understand sexual development, the emergence of sexual behavior problems, and how best to educate youth with ASDs about sexuality, professionals need to work closely with parents and develop and evaluate evidence-based services best suited for families needs. To date, only a single intervention-focused paper has been published in which parents of adolescents (10-19 years) with ASDs participated in a parenting skills enhancement group related to sexuality (Meister, Norlock, Honeyman, & Pierce, 1994). Though the group was well-described, no data were provided about the outcome. Only a single study has investigated the concerns of parents of children and adolescents with ASDs regarding issues of sexuality and sexual behaviors (Ruble & Dalrymple, 1993). Ruble and Dalrymple collected questionnaire information from parents of individuals aged 9 to 39 years, however in reporting their findings there was little discussion of differences in sexual behavior, sexuality education, and concerns regarding sexuality across age. Overall, parents were most concerned about their children's behavior being misinterpreted or misunderstood. Parents were also concerned about pregnancy and risk of abuse. Though a few papers have raised the importance of understanding the sexuality of youth and adolescents with ASDs and have proposed instructional strategies (Dalrymple, Gray, & Ruble, 1991; Ford, 1987; Gray, Ruble & Dalrymple, 1996; Henault, 2004; Mesibov, 1982; Newport & Newport, 2003), no empirical research has addressed these issues or evaluated educational approaches. In contrast, some studies on sexuality have been conducted with adults with ASDs. The small body of literature to date suggests that adult outcomes related to sexuality are generally poor. Self-esteem and mood are affected (Henault & Atwood, 2002), self-injurious behaviors can arise (Mortlock, 1992), as can numerous sexual behavior problems which may be a result of lack of education (Vanbourgondien, Reichle & Palmer, 1997). Vulnerability to abuse continues, and the risk of legal issues increases as behavior may be misinterpreted (Hingsburger, Griffiths, & Quinsey, 1990). In order to be proactive and preventative, empirical studies of sexuality in individuals with ASDs need to be extended downwards, and evidence-based educational programs for parents and adolescents need to be developed and evaluated.

In this session, an overview of sexuality and autism spectrum disorders will be provided. Findings from our parent focus groups and our parent education and skills group will be reviewed. Specifically, parents' concerns, hopes, and service needs regarding their children's sexuality will be discussed. Topics from the parent education group include attitudes, values, and parent roles, understanding typical sexual development and the similarities and differences in children with autism spectrum disorders, defining sexuality and sexuality education, assessment and teaching strategies, abuse prevention, and behavioral concerns. Research review and findings and clinical examples will be used throughout the presentation.

Educational Objectives:

• The learner will develop a better understanding of what sexuality is and why sexuality education is important for individuals with autism spectrum disorders. • The learner will be able to describe parents' concerns, hopes, and service needs related to sexuality and their children. • The learner will be able to describe approaches to sexuality education and intervention for individuals with ASDs. • The learner will develop a better understanding of abuse prevention skills and setting goals to promote personal safety. • The learner will become more familiar with resources related to sexuality and developmental disabilities.