**11. Model programs**

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‐

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‐

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

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

coming able to establish longer term romantic relationships.

440 Recent Advances in Autism Spectrum Disorders - Volume I

tion they learned through reading and other similar activities [21].

of principles already learned that may have been forgotten [8].

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‐ velopment and the development of a clearer concept of friendship.

#### **Case example: H**

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, though she was beginning to increasingly enjoy their time together.

Another intervention that shows promise is the development of Social Stories™ by Carol Gray [51] which can be tailored to each child or adult and written in the person's perspec‐ tive, so it can be used to prepare persons for dealing with friendships, managing intimacy, and improving safety [23]. Video modeling is another technique where a student watches a video where peers or others demonstrate appropriate behavior. The student then models the behavior he or she just viewed. Video modeling, by providing some distance, helps relieve some anxiety during a practice phase before trying a real time interaction [23].

form of sexual behavior [53], with masturbation being the most common sexual behavior. One third of the residents did have other oriented sexual behavior, which mostly consist‐ ed of holding hands, touching, and kissing. One third of the residents did not masturbate at all. A major concern with lower functioning individuals is the inappropriate expression

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443

To improve decision-making related to sexuality in individuals with an intellectual disabili‐ ty, Dukes and McGuire adapted successfully a sexual education program for individuals with special needs called Living Your Life [52]. Possibly such a program could also further be adapted to the specific knowledge and needs of individuals with ASD. In their 2010 arti‐ cle, Travers and Tincani identified Body Awareness, Social Development, Romantic Rela‐ tionships and Intimacy, Masturbation and Modifying Behavior to Meet Social Norms, and Reproductive and Parenting Rights of Individuals with ASD as crucial components of sex‐ uality education for individuals with ASD [8]. These authors also identified the need for professionals to address sexuality education in an open, confident, and objective manner in

The TEACCH program [54] has explicit guidelines for teaching sexuality education to the lower functioning person with ASD [16]. An important component is taking an individual‐ ized developmental approach, with the goal of matching teaching programs to level of func‐ tion and development of long range goals (e.g. capacity to have a romantic relationship versus ability to enjoy masturbation in a socially acceptable manner). Another concept is that sexuality cannot be taught in isolation but must be considered in the context of other skills, such as one's ability to verbally communicate or one's cognitive ability, The most ba‐ sic skill is the ability to have discriminate learning, for example, knowing where and when to touch others or masturbate, and can be taught from a behavioral perspective, with re‐ wards for appropriate behavior. Environmental supports to reinforce appropriate behaviors can be very useful, and environmental changes (e.g. wearing a belt to help prevent a young man from masturbating in public) may allow for intervention prior to a behavior occurring, as slowing down the behavior provides more time to intervene. The next level beyond dis‐ criminate learning is managing personal hygiene, followed by understanding body parts and their functions. The highest level is a complete sex education program, including devel‐

Social skills groups and meet-ups for older adolescents and young adults are essential to continue to build on social skills and allow for facilitated interaction [55]. A recent study with adolescents and young adults with ASD by Stokes and colleagues found that one's level of social functioning predicted romantic functioning [21]. The development of social interaction skills will help promote interest in developing meaningful relationships with others that in turn may lead to intimate relationships and ultimately more independent living arrangements. Equally important are the development of emotion regulation and self-esteem skills that will help to navigate difficulties and changes within significant rela‐ tionships. In their 2006 article, Murphy and Elias [39] described how children and adoles‐ cents with disabilities generally have fewer skills and opportunities to engage in social interactions that could lead potentially into intimate relationships. In particular, this im‐

of sexual behaviors in a socially unacceptable manner [53].

a collaborative effort with the individual with ASD and their family.

opment of sexual relationships with others.

Concepts from other treatment centers have added to sexuality education. Two precepts from the Devereaux Centers for Autism emphasize that 1) parents are the best sexual educa‐ tors and 2) it is normal and natural for every person with a body to express their sexuality regardless of their disability [44]. The Benhaven residential program for those with autism emphasizes 1) the need to teach students socially acceptable sexual behavior appropriate for both childhood and adulthood 2) no disapproval of masturbation when done in socially ap‐ propriate situations as it may be the only sexual satisfaction some individuals with autism may experience and 3) do not encourage behavior beyond which an individual is capable or that will lead to frustration and disappointment [44].

It is helpful to consider the basic learning needs of those with ASD in general and apply them to sexuality education [26].


Especially when considering sexuality education in those with lower functioning ASD, the capacity to make sexually-related decisions must be considered. A study of four adults with moderate intellectual disability (not autism) focused on improving capacity to make sexuality related decisions [52]. Treatment was rendered on a 1:1 basis for 20 sessions. The article by Dukes and colleagues emphasizes that in order to provide valid consent to sexu‐ al contact, the person with a disability requires knowledge about sexuality and the under‐ standing of the concept of what is and is not voluntary [52]. Consent must also be individualized and situation specific for decision-making associated with sexual contact. This intervention focused on sexual safety practices, knowledge of the physical self, knowledge of sexual functioning, and knowledge of choices and consequences in sexual matters. The study noted the need for booster sessions, as the memory of topics covered waned with time, perhaps secondary to little opportunity to utilize the information learned [52]. A survey of the sexual behavior of 89 adults with autism living in group homes in North Carolina found that the majority of individuals were engaging in some form of sexual behavior [53], with masturbation being the most common sexual behavior. One third of the residents did have other oriented sexual behavior, which mostly consist‐ ed of holding hands, touching, and kissing. One third of the residents did not masturbate at all. A major concern with lower functioning individuals is the inappropriate expression of sexual behaviors in a socially unacceptable manner [53].

Another intervention that shows promise is the development of Social Stories™ by Carol Gray [51] which can be tailored to each child or adult and written in the person's perspec‐ tive, so it can be used to prepare persons for dealing with friendships, managing intimacy, and improving safety [23]. Video modeling is another technique where a student watches a video where peers or others demonstrate appropriate behavior. The student then models the behavior he or she just viewed. Video modeling, by providing some distance, helps relieve

Concepts from other treatment centers have added to sexuality education. Two precepts from the Devereaux Centers for Autism emphasize that 1) parents are the best sexual educa‐ tors and 2) it is normal and natural for every person with a body to express their sexuality regardless of their disability [44]. The Benhaven residential program for those with autism emphasizes 1) the need to teach students socially acceptable sexual behavior appropriate for both childhood and adulthood 2) no disapproval of masturbation when done in socially ap‐ propriate situations as it may be the only sexual satisfaction some individuals with autism may experience and 3) do not encourage behavior beyond which an individual is capable or

It is helpful to consider the basic learning needs of those with ASD in general and apply

Especially when considering sexuality education in those with lower functioning ASD, the capacity to make sexually-related decisions must be considered. A study of four adults with moderate intellectual disability (not autism) focused on improving capacity to make sexuality related decisions [52]. Treatment was rendered on a 1:1 basis for 20 sessions. The article by Dukes and colleagues emphasizes that in order to provide valid consent to sexu‐ al contact, the person with a disability requires knowledge about sexuality and the under‐ standing of the concept of what is and is not voluntary [52]. Consent must also be individualized and situation specific for decision-making associated with sexual contact. This intervention focused on sexual safety practices, knowledge of the physical self, knowledge of sexual functioning, and knowledge of choices and consequences in sexual matters. The study noted the need for booster sessions, as the memory of topics covered waned with time, perhaps secondary to little opportunity to utilize the information learned [52]. A survey of the sexual behavior of 89 adults with autism living in group homes in North Carolina found that the majority of individuals were engaging in some

some anxiety during a practice phase before trying a real time interaction [23].

that will lead to frustration and disappointment [44].

**4.** Allowing time for comments and questions

**6.** Provide overviews and structure to the lesson

**7.** Include specific problem solving strategies and examples

**2.** Use of concrete, specific examples instead of abstract concepts

**3.** Dividing large blocks of information into smaller, sequential segments

**5.** Keeping brief any discussions of feelings so as not to confuse or overwhelm

them to sexuality education [26]. **1.** Use of visual aids, role play

442 Recent Advances in Autism Spectrum Disorders - Volume I

To improve decision-making related to sexuality in individuals with an intellectual disabili‐ ty, Dukes and McGuire adapted successfully a sexual education program for individuals with special needs called Living Your Life [52]. Possibly such a program could also further be adapted to the specific knowledge and needs of individuals with ASD. In their 2010 arti‐ cle, Travers and Tincani identified Body Awareness, Social Development, Romantic Rela‐ tionships and Intimacy, Masturbation and Modifying Behavior to Meet Social Norms, and Reproductive and Parenting Rights of Individuals with ASD as crucial components of sex‐ uality education for individuals with ASD [8]. These authors also identified the need for professionals to address sexuality education in an open, confident, and objective manner in a collaborative effort with the individual with ASD and their family.

The TEACCH program [54] has explicit guidelines for teaching sexuality education to the lower functioning person with ASD [16]. An important component is taking an individual‐ ized developmental approach, with the goal of matching teaching programs to level of func‐ tion and development of long range goals (e.g. capacity to have a romantic relationship versus ability to enjoy masturbation in a socially acceptable manner). Another concept is that sexuality cannot be taught in isolation but must be considered in the context of other skills, such as one's ability to verbally communicate or one's cognitive ability, The most ba‐ sic skill is the ability to have discriminate learning, for example, knowing where and when to touch others or masturbate, and can be taught from a behavioral perspective, with re‐ wards for appropriate behavior. Environmental supports to reinforce appropriate behaviors can be very useful, and environmental changes (e.g. wearing a belt to help prevent a young man from masturbating in public) may allow for intervention prior to a behavior occurring, as slowing down the behavior provides more time to intervene. The next level beyond dis‐ criminate learning is managing personal hygiene, followed by understanding body parts and their functions. The highest level is a complete sex education program, including devel‐ opment of sexual relationships with others.

Social skills groups and meet-ups for older adolescents and young adults are essential to continue to build on social skills and allow for facilitated interaction [55]. A recent study with adolescents and young adults with ASD by Stokes and colleagues found that one's level of social functioning predicted romantic functioning [21]. The development of social interaction skills will help promote interest in developing meaningful relationships with others that in turn may lead to intimate relationships and ultimately more independent living arrangements. Equally important are the development of emotion regulation and self-esteem skills that will help to navigate difficulties and changes within significant rela‐ tionships. In their 2006 article, Murphy and Elias [39] described how children and adoles‐ cents with disabilities generally have fewer skills and opportunities to engage in social interactions that could lead potentially into intimate relationships. In particular, this im‐ portant article emphasizes particular skills that are often amiss for individuals with disa‐ bilities, Abilities, especially the ability to make eye contact, develop appropriate greetings, recognize personal space, and interpret nonverbal communication, that apply to individu‐ als with ASD [39].

venting self-injury [8]. A basic tenet is that sexuality education for persons with ASD must be geared to their particular level of cognitive, emotional, and social functioning and is most effective when it is highly individualized. Those with ASD have a right to have a sexual life, a right to receive guidance and support, and they need assistance in expressing sexuality in

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Public intervention strategies should primarily focus on educating the community about the behaviors and traits common to persons with Autism Spectrum Disorders. Education has been shown to foster tolerance and understanding. In addition to this, education tends to spawn advocacy, thereby facilitating the needed changes in existing policies and law. In par‐ ticular, advocates of those with ASD have the greatest opportunity to teach others about this

Particular attention should be given to law enforcement, judicial systems and other popula‐ tions that traditionally have minimal contact with individuals with ASD [7]. Educational ef‐ forts should include a discussion of basic symptomatology, behavioral interventions and treatments. Efforts should also be made to dispel myths, misconceptions and assumptions about those with ASD [58]. In addition, education should include information about poten‐ tial risks to this population and the available programs and systems that are in place to pro‐

In summary, our literature review and ample experiences of the families in our clinical practice show that, while every person has the innate basis for developing sexuality in a multitude of expressions and experiences, individuals with disabilities (and especially in‐ dividuals with an Autism Spectrum Disorder) most often require additional education and help to become able to express their sexuality in a socially appropriate way. While most neurotypically developing peers form intimate relationships beginning in adoles‐ cence and into adulthood, along a variety of experiences from dating to partnering in committed relationships, many individuals with an Autism Spectrum Disorder remain living with their family of origin into their adulthood and have significant difficulty nav‐ igating the social expectations surrounding relationships. Their difficulty may pertain to recognizing their own needs and wants, as well as to recognizing their partner's wishes coupled with more inexperience than their peers in this arena. Individuals with ASD and their parents and caregivers frequently identify this difficulty when directly asked about it. Sexuality education in a supportive format that includes the individual's family and their particular values and background will be most effective. Interventions need to be individualized with a long-range goal that matches the cognitive, social, and emotional developmental level of the person with ASD. As the prevalence of persons with ASD in‐ creases in our society, we are more than ever called to support their ability to mature in‐ to adults capable of functioning in all areas of life, including sexuality and intimacy.

population by modeling how best to support persons with ASD in the community.

an acceptable way to those in their environment [8].

vide protection for the ASD population [44].

**14. Conclusion**

Based on previous studies, and addressing the gap in identified interventions specific to the sexual development of individuals with ASD, a current intervention program called Growing Up Aware is in the process of being developed at Columbia University [14]. The first research component attempted to better understand how parents teach their children with ASD about sexuality. Results of the study showed that the majority of pa‐ rents indicated a strong interest in learning how to better communicate with their chil‐ dren about sexual and reproductive health [14]. This is met currently by insufficient availability of materials for parents. Many clinical providers appear under-equipped, with normative knowledge and skills themselves about how to address questions of pa‐ rents regarding their child's changing sexual development based on parental perception. Clinicians need to become better equipped to help families with unusual or inappropri‐ ate sexual development.

### **12. Medication concerns**

Medication side effects that were not troubling to a child with ASD may cause signifi‐ cant distress in an adult with ASD by decreasing sexual desire or interfering with sexual potency [56]. Self-injury may result if appropriate instruction about masturbation is not provided. Medications such as fluoxetine or sertraline (selective serotonin reuptake inhib‐ itors) are frequently prescribed for persons with ASD to help with anxiety or repetitive behaviors. This group of medications can cause a decrease in sexual desire or make it much more difficult to attain an orgasm. Since masturbation is one of the most frequent sexual behaviors within the ASD population, unintentional self-injury may result from prolonged attempts to reach orgasm. Appropriate instruction in masturbatory behaviors may be necessary in order to prevent self-injury [46]. Alternately, a medication with sex‐ ual side effects may be beneficial for a patient who has anxiety and/or excessive inappro‐ priate sexual behaviors by decreasing sexual desire [57] and enhancing the effectiveness of behavioral interventions.
