Although generally difficult to talk about in an open and honest manner, sex and sexuality are central to our understanding of ourselves as individuals, and integral to our individual determination of quality of life. Contrary to preconceived notions about sexuality instruction, it is not designed to titillate, arouse or excite, and it does not focus primarily on the physical act of having sex. Instead, comprehensive sexuality instruction focuses on who the individual is as a sexual being and what that may mean in his or her life. Sexuality education involves instruction beyond just basic facts and knowledge, and includes issues such as personal safety, individual values, gender-role identification, physical maturation, and an understanding of the complex social dimension of sexuality and sexual behavior. Sexuality education, while complex, should be considered an integral element of a truly effective education for learners with an autism spectrum disorder (ASD), such as Asperger Syndrome (AS), assuming that the goal of such an education is to be a safe, competent and confident adult to the fullest extent possible.
Definition of Sexuality
Human sexuality presents us with very complex subject matter, starting with the definition of sexuality. Sexuality, as defined by the World Health Organization (2004), is:
a central aspect of being human throughout life and encompasses sex, gender identities and roles, sexual orientation, eroticism, pleasure, intimacy and reproduction. Sexuality is experienced and expressed in thoughts, fantasies, desires, beliefs, attitudes, values, behavior, practices, roles and relationships. While sexuality can include all of these dimensions, not all of them are always experienced or expressed. Sexuality is influenced by the interaction of biological, psychological, social, economic, political, cultural, ethical, legal, historical, religious and spiritual factors (p. 2).
Similarly complex is the process of sexual development, which has been described as a “multidimensional process intimately linked to the basic human needs of being liked and accepted, displaying and receiving affection, feeling valued and attractive, and sharing thoughts and feelings” (Murphy & Elias, 2006, p. 398). What both of these definitions boil down to is that sexuality, at its core, is simply part of being human. As such, the avoidance of any discussion of sexuality and/or sexuality instruction as it pertains to learners with ASD constitutes, in effect, a tacit denial of their humanity, which is unacceptable.
History of Sexuality of Individuals with Disabilities
For much of our history, the very concept of individuals with any disability label being viewed as sexual beings was, by and large, anathema to the thinking of the time. The Eugenics movement (1880-1940) resulted in the wholesale sterilization of individuals with developmental disabilities in an effort to reduce the number of such individuals being born (Sobsey, 1994). Beyond the obvious moral and ethical challenges of such a practice, the logic behind the movement was seriously flawed (i.e., most children with developmental disabilities are not born to similarly diagnosed parents, but rather to neurotypical parents) and, thereby, unsupportable on any level. And up until fairly recently, the most favored method of addressing sexuality in learners with developmental disabilities was denial and suppression (Watson, Venema, Molloy & Reich, 2002). Not surprisingly, neither of these approaches can be considered effective. Learners with ASD are, by definition, sexual beings, and to deny them that status is to deny them appropriate access to a critical part of their life—their status as adults and ability to be safe from harm.
The Components of Sexuality Education
Sexuality education starts early in life (e.g., differences between boys and girls, using the boys’ room or girls’ room, etc.) and continues well into adulthood (dating, marriage and parenting). Comprehensive sexuality education consists of instruction in three distinct (yet interrelated) content areas: 1) basic facts/accurate information, 2) individual values and 3) social relationships.
Effective sexuality education for learners with ASD is complicated by the language and communication problems, and social deficits associated with the disorder. And while sexual feelings and interest may be high, primary information sources available to neurotypical teens are often not available to learners on the spectrum (Volkmar & Wiesner, 2003). This, in turn, often results in situations where the information is not being taught in school, not being addressed by the family and not being provided by friends, resulting in little, if any, appropriate skill development. Given the social challenges experienced by even the most academically competent learner with ASD, particular attention, commensurate with the individual’s current abilities, needs to be paid to the provision of direct instruction in social skills relative to the complexities of relationship building. Also, more concrete discrimination training should be provided as to who can or cannot help you in the bathroom, with your menstrual care or at the doctor’s office.
General Instructional Considerations
Given the complexity and importance of the subject area, following are a few general recommendations that should be taken into account when providing sexuality education. First, think ahead and be proactive. Given the divergent learning styles and rates of acquisition of individuals with ASD, waiting until something inappropriate happens is not an option. For example, training in appropriate menstrual care should begin prior to the onset of a young woman’s first period, if it is to be most effective (and, potentially, less challenging). Second, be concrete, but also calm and supportive in all your interactions. References to the “birds and bees” as an introduction to sex or comparisons of the vulva to “petals on a flower” will, in all likelihood, be misunderstood.
Third, break larger areas of information into smaller, more manageable blocks. For some individuals, discussing the biological underpinnings of pregnancy may be quite appropriate, while for others a more simplistic explanation may be sufficient. Next, always remember that sexual behavior is social behavior; therefore, the social dimension of sexuality needs to be addressed when and wherever appropriate. Masturbation, not often thought of as having a social component, does indeed and should include such social rules as 1) don’t masturbate in front of others, 2) your bedroom is the appropriate place for masturbation and 3) close the door to your bedroom if you want to masturbate, etc. Lastly, sexuality education needs to be consistent, and the skills learned may need to be monitored to make certain they are retained. Once a young woman learns who can/cannot help her with menstrual care, the skill may have to be revisited at different times across her life.
Summary
Sexuality education with learners with ASD is often regarded as a “problem because it is not an issue, or as an issue because it is seen as a problem” (Koller, 2000, p. 126). In practice, this means we generally ignore sexuality as it pertains to learners with ASD until it becomes a problem, at which point we generally regard it as big problem. A more appropriate and effective approach is to address sexuality as just another, albeit complex, instructional focus, the teaching of which promotes the ability of the learner to be safer, more independent and more integrated into his or her own community, resulting in a more positive quality of life. As noted by Koller (2000), the question no longer can be if sexuality education should be provided, but rather how it will be offered.
References
Koller, R., (2000). Sexuality and adolescents with autism. Sexuality and Disability, 18,
125-135.
Sobsey, D. (1994). Violence and Abuse in the Lives of Persons with Disabilities: The End of Silent Acceptance? Baltimore: Paul H. Brookes Publishing.
Volkmar, F.R., & Wiesner, L.A. (2003). Healthcare for Children on the Autism Spectrum: A Guide to Medical, Nutritional and Behavioral Issues. Bethesda, MD: Woodbine House.
Watson, S., Venema, T., Molloy, W., & Reich, M. (2002). Sexual rights and individuals who have a developmental disability. In D. Griffiths, D. Richards, P. Fedoroff & S. Watson (Eds.), Ethical Dilemmas: Sexuality and Developmental Disability. Kingston, NY: NADD Press.
World Health Organization (2004). What constitutes sexual health? Progress in Reproductive Health Research, 64. Accessed online (8/15/06) at http://www.who.int/reproductive-health/hrp/progress/67.pdf.
This article originally appeared in the award-winning national magazine on ASD, the Autism Asperger's Digest, Nov-Dec. 2006 issue (www.autismdigest.com).
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