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Sexuality Instruction and ASDs

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Sexuality Instruction and Autism Spectrum Disorders

By Peter F. Gerhardt, PhD

Autism Asperger’s Digest | November/December 2006

 

Although generally difficult to talk about in an open and honest manner, sex and sexuality are central to understanding ourselves as individuals and are integral to our individual determination of quality of life. Contrary to some 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. Comprehensive sexuality instruction, instead, focuses primarily 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. In short, sexuality education, while complex, should be considered an integral element of a truly effective education for learners with an autism spectrum disorder (ASD) assuming 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. 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, I think, we all would agree is unacceptable.

History

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 a developmental disability 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 a developmental disability are born to similarly diagnosed parents but, rather, to neurotypical parents) and, thereby, unsupportable on any level. Up until fairly recently, the predominant method of addressing sexuality in learners with developmental disabilities was denial and suppression. (Watson, Venema, Molloy & Reich, 2002)  Not surprisingly neither was, nor could be, considered an effective approach. 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 an adult, and their ability to be safe from harm.

The Components of Sexuality Education

Perhaps surprisingly, sexuality education starts very early in life (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, a primary information source available to neurotypical teens, (other teens), is often not available to learners on the spectrum. (Volkmar & Wiesner, 2003)  This, in turn, often results in a situation 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. But make no mistake: teens will encounter information about sex as part of daily life, whether it’s from the media, overhearing locker room talk, watching the physical actions of couples at school or in the community, or being the subject of insensitive, sexually-oriented teasing by others (for instance, the girl who develops large breasts earlier than her peers is often the subject of unkind remarks from classmates).

In light of the social challenges experienced by even the brightest learner with ASD, direct training and education about sexual issues needs to be provided, commensurate with each individual’s receptive and expressive abilities. This direct social skills instruction should be two-pronged: on one hand, discussing the complexities of relationship building and, on the other hand, more concrete discrimination training as to who can, and who cannot, help in the bathroom, with menstrual care, at the doctor’s office, etc.

General Instructional Considerations

In general, the three basic goals for sexuality instruction mentioned above – sharing basic facts/accurate information; developing individual values and teaching appropriate social relationship skills – should form the structure of any program for learners with ASD. Age and functioning level will affect how information is shared, but adults should use care not to restrict education because of their own preconceived notions about what these learners ‘need’ or ‘want.’ Other guidelines include:

Think ahead and be proactive. Waiting until something inappropriate happens is not an option. For example, training in appropriate menstrual care should start prior to onset of a young woman’s first period if it is to be most effective (and potentially, less challenging).

Start when children are young. Don’t make the mistake of waiting until the individual expresses interest in sex for education to begin. Teaching children about personal safety issues such as good touch/bad touch, consent and personal boundaries should start at an early age.

Be concrete and factual in presenting information, 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. Much of the information is factual, based on biology. Use visuals whenever possible.

Break larger areas of information into smaller, more manageable blocks (task analyze). For some individuals discussing the biological underpinnings of pregnancy may be quite appropriate while for another a more simplistic explanation may be sufficient.

Always remember that sexual behavior is social behavior and, therefore, the social dimension of sexuality needs to be addressed when and wherever appropriate. “Hidden rules” regarding sexual behavior are pervasive. Masturbation, not often thought of as having a social component, does indeed and it includes 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.

Keep in mind that 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 hope is that this skill is rarely practiced in real life. It may have to be revisited at different times across her life to assure maintenance of these very important skills.

Sexuality education with learners with ASD is often regarded as a “problem because it is not an issue, or is 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, ideally, more effective approach is to address sexuality as just another, albeit complex, instructional focus, the teaching of which allows learners to be safer, more independent and more integrated into their own communities, 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 on line (8/15/06) at

http://www.who.int/reproductive-health/hrp/progress/67.pdf

BIO

Dr. Peter Gerhardt is President of the Organization for Autism Research, and has over 25 years experience working with adolescents and adults with ASD in educational, employment, and community-based settings. He has authored numerous articles and book chapters on adult issues, school-to-work-transition and problematic behavior. Contact Dr. Gerhardt through the OAR website, www.researchautism.org

 

Copyright © Autism Asperger’s Digest. 2006. All Rights Reserved. Distribution via print means prohibited without written permission of publisher.


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