**7. ASD and intimacy**

Individuals growing up with ASD have the same human needs for intimacy and relation‐ ships as anyone [41]. However, the self-identification of these needs may develop later than same age neurotypically developing peers and become expressed differently depending upon the individual's sexual knowledge, beliefs and values. Understanding of implicit dat‐ ing rules and the hierarchy of sexual intimacies may become potential barriers for individu‐ als with disabilities in general and particularly for adolescents and adults with ASD. Focus groups have been shown to make a difference in an individual's understanding, especially with involvement of his or her family and caregivers [19].

Intimacy is the sharing of emotional, cognitive and physical aspects of oneself with those of another. Individuals with ASD often have problems with rigidity and the need for repeti‐ tion, which may limit the spontaneity and playfulness of sexual contact. Sensitivity to physi‐ cal contact and inability to tolerate internal sensations created by physical intimacy may also create significant anxiety. The inability to read the thoughts, feelings, or expressed sensa‐ tions of one's partner can lead to miscommunication, emotionally or physically painful ex‐ periences, and/or shame and guilt. In the context of navigating intimacy, by adulthood there are several options for types of relationships, typically to include living single, cohabitating with one or several others, and living in a marriage/partnership. Currently, many adult indi‐ viduals with ASD continue to reside with their family of origin. Due to poor social relation‐ ships and lack of employment, living with family provides a comfortable social situation, as observed in the case of RJ. There is no need for continual social contact or concern for others, as family already exists as a group.

When even possible, marital relationships can be very strained, as the ASD spouse (usually a male) frequently has difficulty interpreting the spouse's need for emotional attention. Lit‐ tle to no research has been done on the adult lifestyles of higher functioning persons with ASD other than to say that most of them remain in their parents' home. Most previous re‐ search has been with those living in a residential setting. One study whose focus was to sur‐ vey the gender identity of ASD subjects did ask a question pertaining to marital status. Gilmour and colleagues found that the group, which was atypically more female, did not differ from the control group on the basis of marital status. This result was unexpected and may be specific to the group surveyed of 82 persons with ASD [42]. More research is clearly needed in this area, but attaining accurate statistical data will be difficult, as many high functioning individuals with ASD are undiagnosed or misdiagnosed.

#### **Case example: L**

with ASD, this development may occur later than that of their typically developing peers [38] and may include higher percentages of asexuality, but in most aspects of sexual devel‐ opment, the literature identifies similar desires and fantasies [21]. In fact, the literature on sexuality of children and adolescents with developmental disabilities cautions to not errone‐ ously regard people with disabilities as childlike, asexual or as inappropriately sexual [39].

At the same time, several studies were identified by Healy and colleagues [19] that show that people with a disability may hold rather conservative views about their own sexuality related to negative caregiver attitudes toward certain sexual behaviors, including pre-mari‐ tal sex and homosexual activity. Still, in comparison to caregiving staff, family members may altogether be less inclined to openly discuss issues of sexuality. Family members seemed to prefer low levels of intimacy in the relationships of their child amidst a high ac‐

Individuals growing up with ASD have the same human needs for intimacy and relation‐ ships as anyone [41]. However, the self-identification of these needs may develop later than same age neurotypically developing peers and become expressed differently depending upon the individual's sexual knowledge, beliefs and values. Understanding of implicit dat‐ ing rules and the hierarchy of sexual intimacies may become potential barriers for individu‐ als with disabilities in general and particularly for adolescents and adults with ASD. Focus groups have been shown to make a difference in an individual's understanding, especially

Intimacy is the sharing of emotional, cognitive and physical aspects of oneself with those of another. Individuals with ASD often have problems with rigidity and the need for repeti‐ tion, which may limit the spontaneity and playfulness of sexual contact. Sensitivity to physi‐ cal contact and inability to tolerate internal sensations created by physical intimacy may also create significant anxiety. The inability to read the thoughts, feelings, or expressed sensa‐ tions of one's partner can lead to miscommunication, emotionally or physically painful ex‐ periences, and/or shame and guilt. In the context of navigating intimacy, by adulthood there are several options for types of relationships, typically to include living single, cohabitating with one or several others, and living in a marriage/partnership. Currently, many adult indi‐ viduals with ASD continue to reside with their family of origin. Due to poor social relation‐ ships and lack of employment, living with family provides a comfortable social situation, as observed in the case of RJ. There is no need for continual social contact or concern for others,

When even possible, marital relationships can be very strained, as the ASD spouse (usually a male) frequently has difficulty interpreting the spouse's need for emotional attention. Lit‐ tle to no research has been done on the adult lifestyles of higher functioning persons with ASD other than to say that most of them remain in their parents' home. Most previous re‐ search has been with those living in a residential setting. One study whose focus was to sur‐

ceptance of platonic and non-intimate relationships [40].

436 Recent Advances in Autism Spectrum Disorders - Volume I

with involvement of his or her family and caregivers [19].

**7. ASD and intimacy**

as family already exists as a group.

Patient, L is a 35-year-old male engineering student, who was accompanied by his wife for an initial assessment. L's wife believed that he had Asperger's disorder. He did not under‐ stand why this potential diagnosis would even matter to his wife. A major concern in their marriage was L's dislike for social situations. His wife worked at a bookstore and was fre‐ quently invited to her coworkers' houses to play games, watch movies, or perhaps have din‐ ner. L would begrudgingly attend but would then sit quietly and not interact with anyone. His wife's friends would attempt to include him in conversations, but L would frequently give one-word answers and not reciprocate or would engage in a long monologue about his most recent engineering project. He did not understand his wife's distress at these situa‐ tions. As a couple, it was their usual routine to have a date on Saturday night consisting of time spent together in an activity, followed by a sexual encounter. L did not understand why his wife would break this routine when she was upset by his lack of social interaction at her co-worker's home. He would become very angry and frustrated, slamming the door, and breaking small nearby items. His wife encouraged him to come to the appointment as a way for her to begin to understand his behavior and to find ways to cope with him.

## **8. Potential for abuse**

For all individuals with disabilities, including ASD, there is an increased risk for physical and sexual abuse. In 2006, Murphy and Elias reported a sexual abuse rate that was 2.2 times higher than that of children without disabilities [39]. In a recent study, caregivers of individ‐ uals with autism reported that 16.6% had been sexually abused. Individuals with ASD can be subject to sexual victimization due to their trusting natures, desire to be socially accepted, lack of understanding of the meaning or possible consequences of their behavior, or expo‐ sure through internet contacts. Children who experienced sexual abuse were more likely to act out sexually or be sexually abusive toward others [43]. This mindset, although with seemingly honest intentions, places the ASD individual(s) at risk for sexual abuse, due to the lack of available sexual knowledge. Lack of knowledge can contribute to an individual not understanding appropriate boundaries and therefore they may not be able to distinguish when someone is touching them inappropriately. This, coupled with existing social deficits, has resulted in underreported sexual abuse in this population. Therefore, sexual education and public intervention strategies (which will be discussed later in this chapter) are key pro‐ tective factors and could contribute to healthy sexual development.

#### **Case example: M**

A 17-year-old female patient, M, presented for diagnostic evaluation and was diagnosed with ASD. Her cognitive ability was in the low average IQ range. As a student in high school, she was very invested in making friends. She had difficulty managing the intricacies of relationships with other girls in her class, as her hygiene was below average and her clothing choices were not fashionable. M didn't belong to a specific social group of girls, such as cheerleaders, athletes, "Goths," etc. and therefore frequently sat by herself in the lunchroom. As she was failing in her social relationships with girls, she thought she would attempt to make friends with some of the boys in her class. She was coached by her younger sister at home (age 15 without ASD). Her sister was actually aware of M's poor social stand‐ ing with other girls, as she was frequently asked what was wrong with her older sister by peers. M had previously made positive contact with a boy in her art class, who was drawing a video game character. The art teacher supported this interaction and facilitated their con‐ versations in class. Her contact with another boy, however, was less than positive. He told M that the best way to make friends was to spend time together after school at the park. The boy then made sexual advances, kissing the patient. She was very confused and did not stop his behavior, which led him to attempt to fondle her genital area. The encounter stopped at that point. M did not bring this event to the attention of her parents or sister. Fortunately, in her therapy session, she was able to ask if it was OK for a boy to put his hand in her pants. Clearly, M had not received instruction from her parents about "appropriate touch." The pa‐ rents brought this situation to the attention of the school administrators, who reprimanded the boy but could not address it further, as M was older than 16 and it was deemed that she consented to the behavior by not stopping him.

**Case example: C**

tions to visit the home of those relatives.

the behaviors of individuals with ASD.

**10. Sexual education**

Patient C is a 14-year-old boy diagnosed with autism who had minimal verbal skills. At age 14, he was 6'2" tall. Cognitively, he was functioning at the mild intellectual disability range (IQ ~70). C had no friends. His social judgment was poor, so his parents encour‐ aged his interactions and visits with extended family in an effort to improve his social communication. One of the patient's areas of interest was wrestling. He would frequently roughhouse with his other male cousins, who were teenagers as well. On one visit, C was watching a wrestling program with his younger cousin, age 4, as the older boys had gone to the movies and C refused to attend. C, not understanding the social implications of his behavior, began to roughhouse with his young cousin. When his mother and aunt entered the room, C was laying on top of his 4-year-old cousin in what was judged to be an at‐ tempt by the patient to molest this young child, whereas C thought he had won the wres‐ tling match like the man on television. When asked, C could not adequately explain his behavior, due to his limited verbal skills. His mother was able to reassure the young boy's mother that C had no sexual intent. However, C and his mother no longer received invita‐

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439

Masturbation especially in public settings has been the central focus within the developmen‐ tal disorder literature due to the concerns and personal views of the general public and legal officials. In particular, these groups possess a tendency to label public masturbation as sexu‐ al deviancy. This predisposition was greatly reduced when both groups received training on

Sexual education is a core ingredient of successful intervention beginning with body anat‐ omy, physiology and personal hygiene, taught in childhood. As the individual with ASD reaches older adolescence and adulthood, social dictates of what is appropriate sexual be‐ havior in public must be carefully taught with video modeling and social stories [23] to prevent problematic outcomes for the person with ASD and those around him or her [21]. As with all stages of development, sexual development may be delayed, while pubertal development may be chronologically on time. The family needs to be educated about teaching sexuality as well in order to facilitate the knowledge of the individual with ASD throughout his or her development [8,44]. Sexual education can also prevent sexual abuse, unwanted pregnancies, and sexually transmitted infections, or STI [8]. A recent article on the sexuality of children and adolescents identified educational needs in the context of pa‐ rent and health care professionals' expectations [39]. Likewise, a greater educational need was identified for caregivers of individuals with disabilities to help individual better navi‐ gate their social environment with implemented help on a societal and political level [44,46,47]. DeLamater and Friedrich cited the Kaiser Family Foundation (1997), noting that young people especially name mass media as a primary source of information about sex and intimacy over information and education provided by parents or professionals [10].

### **9. Inappropriate sexual behavior**

Along with the concerns of interpersonal intimacy and delayed maturity of sexuality, indi‐ viduals with ASD may have difficulty determining what and where sexual behaviors are ap‐ propriate. Permitted behavior is governed by social appropriateness, which is gathered through social cues. With the limited ability to read and understand social cues, those with an ASD diagnosis can fail to discern between acceptable public behavior and acceptable pri‐ vate behavior [44]. A review article by Stokes and Kaur included masturbatory behaviors in public, removing clothing in public, and touching members of the opposite sex, as reported in previous studies, followed sometimes by the rejection of others due to these problematic behaviors [45]. For example, masturbatory activities are often seen in public when anxiety levels have increased. This in turn could potentially lead to legal implications. Among ado‐ lescents with ASD, some concerns include inappropriate courting behaviors, such as stalk‐ ing or touching the person of interest inappropriately, making inappropriate comments, not always understanding the need for privacy such as knocking on doors [45], making threats against the person of interest, or exhibiting obsessive interest in a person [21], which can lead to both interpersonal and legal consequences. Behavioral and educational interventions must be considered in order to serve as a protective buffer against undesired outcomes.

#### **Case example: C**

**Case example: M**

438 Recent Advances in Autism Spectrum Disorders - Volume I

consented to the behavior by not stopping him.

**9. Inappropriate sexual behavior**

A 17-year-old female patient, M, presented for diagnostic evaluation and was diagnosed with ASD. Her cognitive ability was in the low average IQ range. As a student in high school, she was very invested in making friends. She had difficulty managing the intricacies of relationships with other girls in her class, as her hygiene was below average and her clothing choices were not fashionable. M didn't belong to a specific social group of girls, such as cheerleaders, athletes, "Goths," etc. and therefore frequently sat by herself in the lunchroom. As she was failing in her social relationships with girls, she thought she would attempt to make friends with some of the boys in her class. She was coached by her younger sister at home (age 15 without ASD). Her sister was actually aware of M's poor social stand‐ ing with other girls, as she was frequently asked what was wrong with her older sister by peers. M had previously made positive contact with a boy in her art class, who was drawing a video game character. The art teacher supported this interaction and facilitated their con‐ versations in class. Her contact with another boy, however, was less than positive. He told M that the best way to make friends was to spend time together after school at the park. The boy then made sexual advances, kissing the patient. She was very confused and did not stop his behavior, which led him to attempt to fondle her genital area. The encounter stopped at that point. M did not bring this event to the attention of her parents or sister. Fortunately, in her therapy session, she was able to ask if it was OK for a boy to put his hand in her pants. Clearly, M had not received instruction from her parents about "appropriate touch." The pa‐ rents brought this situation to the attention of the school administrators, who reprimanded the boy but could not address it further, as M was older than 16 and it was deemed that she

Along with the concerns of interpersonal intimacy and delayed maturity of sexuality, indi‐ viduals with ASD may have difficulty determining what and where sexual behaviors are ap‐ propriate. Permitted behavior is governed by social appropriateness, which is gathered through social cues. With the limited ability to read and understand social cues, those with an ASD diagnosis can fail to discern between acceptable public behavior and acceptable pri‐ vate behavior [44]. A review article by Stokes and Kaur included masturbatory behaviors in public, removing clothing in public, and touching members of the opposite sex, as reported in previous studies, followed sometimes by the rejection of others due to these problematic behaviors [45]. For example, masturbatory activities are often seen in public when anxiety levels have increased. This in turn could potentially lead to legal implications. Among ado‐ lescents with ASD, some concerns include inappropriate courting behaviors, such as stalk‐ ing or touching the person of interest inappropriately, making inappropriate comments, not always understanding the need for privacy such as knocking on doors [45], making threats against the person of interest, or exhibiting obsessive interest in a person [21], which can lead to both interpersonal and legal consequences. Behavioral and educational interventions must be considered in order to serve as a protective buffer against undesired outcomes.

Patient C is a 14-year-old boy diagnosed with autism who had minimal verbal skills. At age 14, he was 6'2" tall. Cognitively, he was functioning at the mild intellectual disability range (IQ ~70). C had no friends. His social judgment was poor, so his parents encour‐ aged his interactions and visits with extended family in an effort to improve his social communication. One of the patient's areas of interest was wrestling. He would frequently roughhouse with his other male cousins, who were teenagers as well. On one visit, C was watching a wrestling program with his younger cousin, age 4, as the older boys had gone to the movies and C refused to attend. C, not understanding the social implications of his behavior, began to roughhouse with his young cousin. When his mother and aunt entered the room, C was laying on top of his 4-year-old cousin in what was judged to be an at‐ tempt by the patient to molest this young child, whereas C thought he had won the wres‐ tling match like the man on television. When asked, C could not adequately explain his behavior, due to his limited verbal skills. His mother was able to reassure the young boy's mother that C had no sexual intent. However, C and his mother no longer received invita‐ tions to visit the home of those relatives.

Masturbation especially in public settings has been the central focus within the developmen‐ tal disorder literature due to the concerns and personal views of the general public and legal officials. In particular, these groups possess a tendency to label public masturbation as sexu‐ al deviancy. This predisposition was greatly reduced when both groups received training on the behaviors of individuals with ASD.

#### **10. Sexual education**

Sexual education is a core ingredient of successful intervention beginning with body anat‐ omy, physiology and personal hygiene, taught in childhood. As the individual with ASD reaches older adolescence and adulthood, social dictates of what is appropriate sexual be‐ havior in public must be carefully taught with video modeling and social stories [23] to prevent problematic outcomes for the person with ASD and those around him or her [21]. As with all stages of development, sexual development may be delayed, while pubertal development may be chronologically on time. The family needs to be educated about teaching sexuality as well in order to facilitate the knowledge of the individual with ASD throughout his or her development [8,44]. Sexual education can also prevent sexual abuse, unwanted pregnancies, and sexually transmitted infections, or STI [8]. A recent article on the sexuality of children and adolescents identified educational needs in the context of pa‐ rent and health care professionals' expectations [39]. Likewise, a greater educational need was identified for caregivers of individuals with disabilities to help individual better navi‐ gate their social environment with implemented help on a societal and political level [44,46,47]. DeLamater and Friedrich cited the Kaiser Family Foundation (1997), noting that young people especially name mass media as a primary source of information about sex and intimacy over information and education provided by parents or professionals [10]. This is likely even more true currently, with youth having increased access to information via the Internet and the use of personal electronics. In this sense, the use of electronics may become a useful educational medium and perhaps even an interactive tool to facili‐ tate development of socially expected courting and dating behaviors, with the goal of be‐ coming able to establish longer term romantic relationships.

but may need the support of a formal sexual education program provided by the school sys‐ tem. Parents provide the foundation for the development of the child's sexuality by model‐ ing relationships in the home. The family's moral values, culture, religion, and other beliefs are clearly a major part of sexuality education. An IEP team can designate a specific compo‐ nent of the health curriculum to sexuality that must be geared to the child's cognitive, emo‐ tional, and social level of development. Such a plan should be revisited and revised as a child/adolescent matures with the need for more information, skills, and attitudes [8].

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Several models and approaches to sexuality education for those with ASD have been pub‐ lished. One model from a research study in Israel provided treatment through ten bi-weekly sessions, each devoted to topics that included establishment of self-identity, acceptance of one's disability, independence in social life, establishment of friendship and intimate rela‐ tionships, sexual knowledge and development, and safety skills [50]. The aims of the group were to 1) discuss attitudes and feelings, 2) provide information, 3) advise parents on how to help children manage their sexuality, and 4) encourage independence in their children. The overarching principles of this group treatment were to 1) develop an appropriate self-con‐ cept, 2) find a similar social group, 3) develop relations based on equality and reciprocity, and 4) prevent abusive relations, with all of these aims potentially leading to satisfactory in‐ timate romantic relationships. The most improvement in this study was shown in social de‐

H is a 19-year-old female who recently began attending community college. She has an above average IQ and good facility with language. She was able to manage some friend‐ ships in high school by being the manager of one of the girls' sports teams. The girls on the team were kind to her and included her in team activities, encouraged by the team's coach. H also belonged to the Anime club and had some friends there. The structured schedule of high school, along with the academic supports provided by her Individual‐ ized education plan, coaching and encouragement from her parents, enabled her success. H was having a difficult transition to college with no friends, no academic supports, and a less structured schedule. She attended a session provided by the disability services de‐ partment and sat next to a boy several years older than she with a similar disability, who initiated and maintained a conversation. H was aware that he was a stranger and was careful in the information she provided. He asked her to meet for lunch at the cafeteria several times. H's mother wanted to meet him because she was unsure of her daughter's social judgment. With her parent's approval and her mother's coaching about dating, they went to a movie. Their relationship slowly progressed over the last six months beyond the handholding stage to the first kiss. H's boyfriend was able to allow her to manage the re‐ lationship to assist H in dealing with the anxiety that this relationship had created for her,

velopment and the development of a clearer concept of friendship.

though she was beginning to increasingly enjoy their time together.

**11. Model programs**

**Case example: H**

Education about sexuality is critical for the ASD population. Many persons with ASD have the desire to have friendships and intimate relationships; however it is very difficult for them to make the complex emotional distinctions between friendship, kindness, and romantic interest. In a study by Hellemans, the majority of subjects with ASD expressed sexual interest but lacked the appropriate skills and knowledge to have a successful rela‐ tionship [48]. Their misinterpretations can lead to emotional pain for themselves and pos‐ sibly inappropriate behaviors toward others [26]. The most common forms of sexuality education for adolescents and young adults occur through conversations with their peers and/or their families. A study by Realmuto and Ruble suggested that typical children learn about sexuality via casual social experiences, including those in the community, family and school settings [49]. Persons with ASD are at a unique disadvantage as they do not initiate or maintain social contacts to acquire such education. Family members ap‐ proach sexuality in their children with ASD by denying it and not teaching sexuality at all, or by considering that their ASD children can approach sexuality as any other adoles‐ cent would [21]. In a study by Stokes and colleagues, 25 subjects with ASD aged 13-36 were compared to a normal control group of the same age; the study found that persons with ASD relied less upon peers and friends for knowledge but relied more on informa‐ tion they learned through reading and other similar activities [21].

When considering education about sexuality, three content areas need to be included: 1) ba‐ sic facts and accurate information, 2) formation of individual values with consideration of family values, and 3) application of sexuality to relationships and social situations [15]. More specifically, basic biology of the sexual organs and how they function for males and females, maintenance of hygiene, prevention of pregnancy and sexually transmitted diseas‐ es, methods of birth control, how to initiate and maintain intimate sexual relationships, how to prevent unwanted sexual contact, the role of masturbation as a normal sexual bodily function and its social implications, as well as reproductive and parenting rights. What is most essential is to maintain a consistent focus on the social component of sexual behavior [8]. Due to theory of mind deficits, a person with ASD may be unable to understand the ac‐ tions, feelings and intentions of others, such as not recognizing obvious clues of disinterest and being inappropriately persistent in pursuing a desired person. The person with ASD must learn how to initiate romantic relationships, understand dating behaviors, know ap‐ propriate physical boundaries, develop listening skills, and understand the meaning of con‐ sensual sexual activity [8]. Frequently, booster sessions are recommended as an individual grows and develops and has the need for additional information and skills or reinforcement of principles already learned that may have been forgotten [8].

Deciding who should teach a person with ASD about sexuality can be confusing. A team ap‐ proach may be most successful. Parents and caregivers usually provide primary instruction but may need the support of a formal sexual education program provided by the school sys‐ tem. Parents provide the foundation for the development of the child's sexuality by model‐ ing relationships in the home. The family's moral values, culture, religion, and other beliefs are clearly a major part of sexuality education. An IEP team can designate a specific compo‐ nent of the health curriculum to sexuality that must be geared to the child's cognitive, emo‐ tional, and social level of development. Such a plan should be revisited and revised as a child/adolescent matures with the need for more information, skills, and attitudes [8].
