Romantic Relationships, Sexuality, and Autism Spectrum Disorders



Fred R. Volkmar, Brian Reichow and James C. McPartland (eds.)Adolescents and Adults with Autism Spectrum Disorders201410.1007/978-1-4939-0506-5_5
© Springer Science+Business Media New York 2014


5. Romantic Relationships, Sexuality, and Autism Spectrum Disorders



Lynn Kern Koegel , Whitney J. Detar , Amanda Fox  and Robert L. Koegel 


(1)
University of California, Santa Barbara, Santa Barbara, CA, USA

 



 

Lynn Kern Koegel (Corresponding author)



 

Whitney J. Detar



 

Amanda Fox



 

Robert L. Koegel



Abstract

Romantic relationships and sexual behaviors among individuals with autism spectrum disorders (ASDs) are complicated matters and involve many personal issues including emotions, values, attitudes, and beliefs—all of which can change constantly in response to interactions, experiences, and education (Sexuality and Disability 18:125–135, 2000). Further, other issues, such as living conditions (e.g., independent vs. residential), extent of symptom severity, and level of communication and socialization may also play a role in relationships and sexuality (Research in Autism Spectrum Disorders 5:614–621, 2011). In regard to education and general knowledge, sex education materials and instruction for individuals with autism differ greatly from those provided for typically developing students, with individuals with disabilities receiving far lower levels of support in this area. While almost all parents of individuals with disabilities favor comprehensive sex education for their adolescent/adult children, very few individuals with disabilities receive any type of formal sex education (Sexuality and Disability, 18:125–135, 2000), and furthermore, most teachers do not feel confident in their ability to provide sex education to students with ASD (Research in Autism Spectrum Disorders 4(3):433–437, 2010). Logically, then, without education and the communicative skills to gain social support from and interact with peers, individuals with ASD may have more difficulties with relationships and sexuality. The literature also suggests that they demonstrate more challenges with a wide variety of sexuality-related issues, including their bodily changes during puberty, privacy rules and customs, and masturbation. Further, adolescents and adults with ASD have far fewer sexual experiences than their typically developing peers, despite their expressed sexual interest (Sexuality and Disability 28:93–104, 2010). Despite these issues and concerns, there is a paucity of research, literature, and education relating to romance and sexuality in individuals with ASDs, and while the desire for intimate and sexual relationships may be similar to individuals without ASDs, attitudes and practice in this population appear to differ. This chapter will discuss issues related to romance and sexuality in individuals with ASDs.



Introduction


Romantic relationships and sexual behaviors among individuals with autism spectrum disorders (ASDs) are complicated matters and involve many personal issues including emotions, values, attitudes, and beliefs—all of which can change constantly in response to interactions, experiences, and education (Koller, 2000). Further, other issues, such as living conditions (e.g., independent vs. residential), extent of symptom severity, and level of communication and socialization may also play a role in relationships and sexuality (Mehzabin & Stokes, 2011). In regard to education and general knowledge, sex education materials and instruction for individuals with autism differ greatly from those provided for typically developing students, with individuals with disabilities receiving far lower levels of support in this area. While almost all parents of individuals with disabilities favor comprehensive sex education for their adolescent/adult children, very few individuals with disabilities receive any type of formal sex education (Koller, 2000), and furthermore, most teachers do not feel confident in their ability to provide sex education to students with ASD (Kalyva, 2010). Logically, then, without education and the communicative skills to gain social support from and interact with peers, individuals with ASD may have more difficulties with relationships and sexuality. The literature also suggests that they demonstrate more challenges with a wide variety of sexuality-related issues, including their bodily changes during puberty, privacy rules and customs, and masturbation. Further, adolescents and adults with ASD have far fewer sexual experiences than their typically developing peers, despite their expressed sexual interest (Hellemans, Roeyers, Leplae, Dewaele, & Deboutte, 2010). Despite these issues and concerns, there is a paucity of research, literature, and education relating to romance and sexuality in individuals with ASDs, and while the desire for intimate and sexual relationships may be similar to individuals without ASDs, attitudes and practice in this population appear to differ. This chapter will discuss issues related to romance and sexuality in individuals with ASDs.


Privacy Issues and Masturbation


Despite the commonality of sexual behavior in adolescents and adults with ASD, the growth of sex drive that typically occurs during puberty is not accompanied by a corresponding growth in the field of social “know-how” and this can lead to inappropriate behavior (Gabriels & Van Bourgondien, 2007; Gillberg & Coleman, 1992). Adolescents and adults with ASD display more inappropriate sexual behaviors than their peers. For example, without intervention, they may engage in fewer privacy behaviors (such as not seeking privacy for undressing and masturbating), have poorer knowledge regarding privacy rules (such as knocking rather than entering closed doors and not touching oneself in public), and engage in inappropriate socio-sexual behaviors (such as speaking about sexual activities in public) more frequently than their typical peers (Stokes & Kaur, 2005). Masturbation is the most common form of sexual behavior in individuals with ASD, and many studies report inappropriate masturbation behaviors to be common in this population, such as engaging in masturbation in public locations (Hellemans, Colson, Verbraeken, Vermeiren, & Deboutte, 2006; Ruble & Dalrymple, 1993; Van Bourgondien, Reichle, & Palmer, 1997).


Mutual Satisfaction


Another issue related to the sexuality of individuals with ASD is the degree to which the individual with autism is able to engage in a relationship that is mutually satisfying to both partners. In one study, among male adolescents and adults that caressed or cuddled others, approximately one-third reported that they did not care whether or not the other person enjoyed this (Hellemans et al., 2010). Similarly, other researchers have found little overlap in the percentage of individuals with ASD that displayed sexual behavior and the percentage that took into account whether the other person wanted the sexual behavior (Hellemans et al., 2006). Further, of the approximately 17 % of the individuals with ASD that displayed sexual touching, none of them verbally expressed that they cared whether it was enjoyed by the other person (Stokes & Kaur, 2005). It is unclear whether individuals with autism actually care but merely cannot express their feelings well, or if they lack the education to fully understand the physical and psychosocial issues that create a mutually satisfying relationship. In any case, such verbal reports should raise concern.

These types of sexuality issues can greatly impact the family, and research shows that parental concerns are greater for parents of individuals with ASD in comparison to parents of typically developing adolescents (Stokes & Kaur, 2005). Thus, there is a significant and unmet need to address relationship and sexuality issues with students and adults with ASDs.


Victimization and Safety


Another issue that has been discussed in the literature relates to sex crimes, particularly against women with disabilities. While females with ASD are less likely to engage in heterosexual relationships than males with ASD or typically developing males and females, and a greater number report being asexual (Gilmour, Schalomon, & Smith, 2012), an area that cannot be overlooked relates to the fact that individuals with ASD may be at greater risk for victimization (Sobsey & Doe, 1991). This may occur for several reasons. First, these individuals are often considered “perfect victims” because they often have limited communication and therefore may not be able to verbalize experiences of victimization. Second, it is difficult for family members, friends and even professionals to recognize reactions of physical and emotional torment, instead often attributing these reactions to stereotypical or disruptive behaviors. Similarly, psychological symptoms such as acute anxiety, depression, and post-traumatic stress disorder are often overlooked and mistakenly attributed to typical behaviors exhibited by individuals with ASDs. An additional complication that increases risk of victimization in this population is that perceptions of sexual experiences may be very different in individuals with autism and developmental disabilities than those of a typical individual.

In Goodman, Koss, Fitzgerald, Russo, and Keita’s (1993) integrative analysis of the most prominent prevalence studies in the field, findings suggest that between 21 and 34 % of women in the United States will be physically assaulted—slapped, kicked, beaten, choked, threatened or attacked with a weapon. Between 14 and 25 % of adult women have endured rape according to its legal definition, which includes acts involving non-consensual sexual penetration obtained by physical force, by threat of bodily harm, or when the victim is incapable of giving consent by virtue of mental illness, intellectual disability, or intoxication (Koss, 1993). These rates of violence against women in the general population probably represent marked underestimates. As Browne (1993) points out, national surveys of violence typically do not include all groups in their samples. Groups not included in the surveys may consist of women who are hospitalized, homeless, or institutionalized, among others. These groups, who are potentially at the highest risk—are typically underrepresented. Presently, there is a gap in existing research regarding prevalence of sexual abuse among individuals with ASD. Due to methodological flaws in sampling and identification practices, it is difficult to obtain accurate rates of prevalence within this group of individuals. However, current research has sought to address this problem through several recent studies that focus on the prevention of sexual abuse and assessment and interventions designed specifically for individuals with disabilities.


Communication and Social Issues


Further adding to the difficulties in addressing this area is that evidence suggests that individuals with autism and developmental disabilities may perceive and/or exhibit emotions in a different manner than is typical. Although it is difficult to assess whether the individuals with ASD actually perceive things differently, or if they merely express them differently because of a communication difficulty, the literature does frequently report different emotional responses from individuals with ASD. For example, Losh and Capps (2006) examined emotional experience in autism through a discourse analytic framework in an effort to identify children’s strategies for interpreting emotional versus non-emotional encounters. Participants included 50 children (aged 7–13) 28 of whom were described as “high-functioning” individuals with autism and 22 who were typically developing comparison peers. Children were given a list of simple emotions, complex emotions, and complex, self-conscious emotions, as well as two non-emotions that were presented in random order. The children were asked to provide a definition of each and to tell the experimenter about a time when they experienced each emotion. The children’s accounts were analyzed for thematic content and discourse structure. Results indicated that “high-functioning” children with autism were able to discuss contextually appropriate accounts of simple emotions. However, their strategies for interpreting all types of emotional (but not non-emotional) experiences differed from those used by typically developing children. “High-functioning” children with autism were less inclined to organize their emotional accounts in personalized, causal, explanatory frameworks and displayed a tendency to describe visually salient elements of experiences. This was seldom observed among the comparison group. However, “high-functioning” children with autism did produce accounts comparable in length to those of typically developing children. These findings may suggest that children with autism produce less coherent representations of emotional experiences and may use alternative strategies for interpreting emotionally evocative encounters. Despite their apparent ability to distinguish appropriate contexts for the expression of simple emotions, children with autism’s script-like emotional accounts, lacking reference to the causes of their emotions, have caused some to question the children’s depth of understanding of all types of emotional experiences. Also evident in responses was the overall impoverished structure of their emotional accounts relative to those of comparison children. Again, it is difficult to know how much of these differences are due to the general communication difficulties that are symptomatic of individuals with ASD. Whatever the reason, such results suggest it is likely that such individuals may be especially vulnerable to inappropriate sexual encounters and victimization.

Historically, research has provided some insight into the feelings and coping behaviors of typically developing individuals who have experienced victimization. According to Frieze, Hymer, and Greenberg (1987) typical emotional responses include a loss of a sense of self, a loss of feeling safe, and feelings of inequity or injustice. As part of the healing process, the typical victim tries to understand how and why a criminal would have violated them and considers how he or she (the victim) may have contributed to the criminal’s action. Redefining the victimization experience as occurring for some other purpose is one common, useful coping mechanism. Another reaction is to blame oneself. Given that difficulty with communication may accompany ASD, it may be more challenging for these individuals to report and discuss their experiences and employ valuable coping strategies after victimization has occurred.


Bullying


Other types of victimization include bullying or peer harassment, and because victimization is often more difficult to identify in individuals with autism and developmental disabilities, it is important to recognize the domains in which this population may be most vulnerable. Individuals with ASD exhibit impairments in the social realm. These challenges may put them at greater risk of victimization by peers and adults in social domains. Youth on the autism spectrum seek friendships and relationships, however, this is juxtaposed with difficulties in understanding the subtleties and nuances of social interaction. Unfortunately, this may make them easy targets for ridicule. Humphrey and Lewis (2008) conducted a qualitative study of the views and experiences of 20 students on the autism spectrum who were fully included in mainstream classrooms in four secondary schools. Data were collected through semi-structured interviews and student diaries. Results indicated that social naivety exhibited in the sample appeared to be frequently used for exploitative purposes by other students. According to Norwich and Kely (2004), students with special educational needs are more likely to be bullied than other students. However, it may be argued that the difficulties in communication and interaction experienced by those with ASD place them at an even higher risk for bullying and harassment than other students. Furthermore, these individuals may lack strategies to help them overcome the problems associated with being bullied, and the thought of school, itself, can become distressing (Tantam, 2000). Left unidentified or unaddressed, these experiences may produce a negative cycle in which students experience increasing levels of social isolation (Bauminger & Kasari, 2000).


Technology


As the world becomes more technically advanced, this arena may also present interesting challenges for individuals with ASD. For example, although some individuals with autism may prefer the computerized aspects of social networking, face-to face social interactions can be difficult. These challenges are compounded by the impersonal nature of social networking, where many visible social cues are absent and communication may be more nuanced and difficult to interpret.

Due to recent concerns about possible social networking victimization, several organizations have developed social networking sites specifically for individuals with ASD, which may provide a promising venue for members of the autism community to share insights, opinions, information and engage in social relationships in a more protected manner.


Sex Education


Individuals with autism and developmental disabilities are at increased risk of sexual abuse due to several factors. As discussed earlier, having difficulties with communication makes these individuals more vulnerable to sexual abuse. Secondly, individuals with autism and developmental disabilities are often denied the opportunity to learn about and explore their sexuality. This subject has been wrought with controversy. Some argue that while these individuals have the right to learn about sexuality, others conjecture that this poses risks to both the individuals involved and to society in general. The philosophy of inclusive practice has brought a corresponding increase in social opportunities with peers and the general public. Despite the positive strides these changes have created, they can also be problematic and bring potential risks (Tissot, 2009), particularly in situations where proper supervision and education are not provided. Failing to provide these individuals with opportunities to learn about appropriate and responsible sexuality puts them at greater risk for victimization. For example, many adult individuals with ASD are placed in the care of others for long hours, or may reside in residential facilities. Ideally, these settings provide respite for families and promote independent living skills. However, if not carefully monitored, these settings can provide an environment that facilitates victimization of vulnerable individuals. Again, difficulties in social and communication areas may make it difficult for individuals with ASD to understand and report inappropriate behaviors.

There are, however, some programs that may be helpful in improving the gap in sex education for individuals with various disabilities that may prove to be helpful for individuals with ASD. For example, Hughes et al. (2010) evaluated the effectiveness of a safety awareness program for women with disabilities. The sample included seven women with diverse disabilities (aged 41–58) involved in a community site. Baseline and post-intervention questionnaires were administered to the women who completed A Safety Awareness Program (ASAP: A Program for Women). The intervention consisted of eight interactive sessions emphasizing violence-free relationships, respect for personal choice, healing from violence, and empowerment of people with disabilities, and was designed to increase protective factors. Outcome measures included self-efficacy, safety skills, social support/isolation, and safety-promoting behaviors. The results indicated that women who completed the program showed significant increases from baseline to post-intervention on measures of self-efficacy and safety skills. Although this pilot study suffered from a number of limitations, including a small sample size, the findings suggest that participation in a safety awareness program may improve protective factors and knowledge of safety, which may be an effective means of violence prevention for this population.

In another computer-based program, Robinson-Whelen et al. (2010) sought to investigate the efficacy of abuse and safety assessment interventions. The aim of this study was to evaluate the effects of the Safer and Stronger Program (SSP). This computer-based, disability-specific assessment tool was designed to provide an accessible and anonymous method for women with disabilities to self-screen for inter-personal violence by disclosing their exposure to abuse, describing the characteristics of their primary perpetrator, and reporting their use of safety promoting behaviors. The SSP integrates audio and video vignettes of four interpersonal survivors who describe their abuse and survival experiences, offer affirming messages, identify warning signs, and discuss safety-promoting strategies. The sample included 305 women (aged 38–63) with disabilities and used a randomized control group design. The intervention group completed the assessment intervention both at Time 1 and again, 3 months later at Time 2; the control group completed the assessment intervention only once, at Time 2. Analyses compared intervention and control groups at Time 2 and evaluated change over time in intervention group participants. Results indicated that the intervention group had greater abuse awareness than the control group at Time 2, and abuse awareness increased from Time 1 to Time 2 among women in the intervention group, particularly among women who had experienced little or no abuse in the past year. Both abuse awareness and safety self-efficacy were significantly related to safety behaviors. These findings suggest that computerized programs, such as SSP may offer promise as a non-threatening method of conducting abuse assessments among women with disabilities while also serving as an intervention to enhance abuse awareness.

As a whole, the literature suggests that despite advancements in detecting victimization in individuals with autism and developmental disabilities and a few educational programs, we are still faced with the challenges in providing appropriate evidence-based treatments. Again, treatment of sex abuse in individuals with autism and developmental disabilities differs markedly than that of typically developing individuals. Adapted therapy approaches and adapted sexual abuse treatments may be necessary for people with developmental disabilities. Adapted therapy techniques are similar to conventional therapeutic approaches but require that a practitioner adapt the techniques to the person’s level of understanding, communication, development, and social adaptability. Individuals with ASD often have challenges with social areas and communication, and these complications may need to be addressed through creative solutions and repeated, targeted interventions. Individuals with ASD may have additional concerns and confusion about their sexuality and their dependency on others may exacerbate fears of retaliation and abandonment. Practitioners need to be aware of the impact of these combined issues for individuals with ASD and recognize that treatment may be more complex than for individuals without developmental disabilities.

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Nov 27, 2016 | Posted by in PSYCHOLOGY | Comments Off on Romantic Relationships, Sexuality, and Autism Spectrum Disorders

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