Parental Report of Gender Differences in Sexual Functioning among Adolescents with Down Syndrome : A Jordanian Experience

Background: Recently, there has been an increased interest in sexuality among teenagers with Down syndrome (DS). Although DS has been well studied in the western continents, its research is relatively scarce in the Arab region. Aims: This is a cross -sectional study to explore the demographic characteristics and the sexual profile among 23 adolescents with DS who attended the outpatient psychiatric clinic of a tertiary care hospital in Amman, Jordan. Method: A semi-structured interview conducted with the parents of individuals with DS was used to record the socio-demographic profile, self-care skills, socio-sexual skills and sexual behavior. Results: The mean age of the sample was 13.5 years, out of which 69% were males; 26% were sexually oriented and able to identify their gender identity. When questioned about masturbation and self-care skills, a significant statistical difference was observed where girls showed more self-care skills while boys showed more masturbation acts. The pvalue was (p = 0.045) for masturbation, p = 0.02 for washing the genitals, p = 0.011 for changing the underwear, and p = 0.001 for hygiene after using the toilet. Conclusion: The present study expands our knowledge about sexual issues in individuals with DS. We found that all adolescents reported adaptation to the physical changes of puberty. However, gender difference on some of the sexuality subscales was observed, mainly in the practice of some selfcare, socio-sexual skills and sexual behavior. DOI : 10.14302/issn.2474-9273.jbtm-15-792 Corresponding author: Nevin FW Zaki, Lecturer of Psychiatry, Mansoura University, Egypt. Email: nevinfzaki@yahoo.com, Phone:002-01283339789, PO Box:36551 Running title: Sexuality & Down Syndrome


Introduction
Sexual development is a multi-dimensional concept. It is closely related to the basic human needs of being liked and accepted, displaying, and receiving love, feeling valued and attractive, and sharing feelings with a partner. It doesn't only involve anatomic and physiologic functioning, but it also relates to sexual knowledge, beliefs, attitudes, and values [1].

Normal sexuality
Sexuality is a crucial aspect of the adolescents' emotional, physical, and psychological development and well-being. It has a fundamental role in an individual's overall self-identity [2,3]. cultural, legal, religious, and spiritual factors [4]. This developmental process might be affected negatively by a number of factors. Those factors, according to Schalet [5], are defining teenage sex as wrong or risky and assuming that they are unable to distinguish sexual acts that are safe from those that are high risk. Furthermore, viewing sexuality as an "either/or" activity rather than a continuum, leading to scanty attention to the skills necessary to express and communicate sexual wishes.
Also, not paying enough attention to the relationships with partners and adult caregivers that can support positive adolescent sexual experiences. Finally, failure to recognize the socioeconomic deprivations that are at the root of many negative sexual behaviors will shape the normal development of sexuality in teens. The development of a secure sexual identity is a difficult task even in the absence of a physical or mental disability [6].
In patriarchal societies, such as those from the Arab world, girls are subordinate. They possess an inferior position to men and lack access to resources and decision making processes [7]. Oppression of girls and women starts within the families. Parents usually show son preference, while discriminating against girls in the form of food distribution, the burdening of household work, lack of educational opportunities, lack of freedom and mobility, sexual harassment in the workplace, lack of inheritance or property rights, male control over women's bodies and sexuality, and no control over fertility or reproductive rights. Girls usually have no right to choose their husbands or express sexual interests in the other sex [8]. Thus, females are at a socio-cultural disadvantage in relation to males [9]. Males will be the only ones who benefit from this type of society, while all the disadvantages will be directed toward females. In many Arab communities, boys in the family are regarded as assets, investments to the social prestige of the family, while females are downgraded to burdensome and a potential source of shame [10]. Gender inequality is the end result of patriarchal societies which positively influence the sexual development in male members and negatively affects it in female counterparts. Boys will be encouraged to be involved in sexual relationships (or at least will not be punished if they do so), while females are oppressed and taught that their bodies are something to be shy and ashamed of. Furthermore, the patriarchal structure of the Arab society limits the possibilities for providing appropriate services to women and their children that will satisfy their need for physical safety and emotional security, as well as for their sexuality and general well-being [11].
The cultural view characterizing patriarchal societies is far beyond the scope of this article. However, its role in sexuality will be summarized. First, promoting the authority of men to achieve a more advantaged social situation. Second, behaviors perceived as feminine will be discouraged in the male society. Thus, boys become aggressive and violent towards girls to avoid being labeled as non-masculine. Third, there is economic dependence of women on men. Men will earn more, and have a better chance to get educated and hired.
Consequently, this unfair division of income and advantages will place the child bearing and upbringing of women alone. Mothers in the Arab society are usually the ones who will take care of their children in all aspects of life, particularly if these children are disabled.
They will be forced to stay married to the neglectful fathers to avoid the stigma of divorce. Patriarchal societies are more tolerant toward men who neglect their roles as husbands than they are toward women who ignore their role as wives [12].

Sexuality in adolescents with disabilities:
Like all adolescents, teens with DS may express a desire and hope for marriage, children, and normal adult sex lives. Individuals with developmental disabilities feel similar needs for sexual development, desires, and sex drives like their peers without disability [13]. However, parents and health care professionals are often unenthusiastic regarding the potential of children with disabilities to enjoy intimacy and sexuality in their relationships [14]. guilty afterward (70%), and losing self-respect (69%).
All were more commonly reported by females [20].

Gender differences in sexuality
Information about the differences between genders, physiological and psychological understanding about sexual development and orientation regarding inadequate social behavior is rare. According to [21],    [29]. In a study by Mensch [30] on Egyptian youths, girls had much less free time than boys, were less mobile, were much less likely to participate in paid work, and had heavier domestic responsibilities regardless of whether or not they were in school. Girls favor a later age of marriage. Boys were significantly more likely than girls to favor educational inequality between spouses, although neither boys nor girls had particularly progressive gender role attitudes.
In the late nineteenth century, masturbation was condemned in many countries as sinful and also harmful to health. Now it is widely accepted as normal in some cultures [31] although act [32]. In this study, the percentage of masturbation had a higher trend in the participating boys than the girls. This is a different finding from previous studies reporting masturbation more common among females.
Rates of masturbation are not significantly higher in individuals with DS than those in the general population [33]. Our finding of sex differences with males performing masturbatory behavior more than females is particularly noteworthy. Parents were ashamed when mentioning this fact about their children because they do not want to show their lack of religiosity or their inability to properly discipline their DS children, which is considered to be unaccepted in the society. Again, due to the cultural belief of male dominance and female subordination, parents were more accepting of their boy's masturbation more than the girls and were less ashamed about it, which might explain our findings.
However, it is not clear whether the developmental process differs between males and females. Previous studies supported that females showed superior motor function compared to that of males which results in masturbating more frequently [34].
It was noticed that adolescents included in the study showed high levels of inappropriate sexual behaviors in addition to lack of hope in the ability to bond and maintain relationships with other sex. In the majority of cases, this is due to the effect of parenting.

Development of sexually inappropriate behaviors in
persons with DS has been discussed in several studies previously. Richards et al [35] listed the reasons behind such behavior: those who lack sexual education, lack social exposure, are deprived of peer group interaction, whose activities are restricted by family, their motor coordination, and negative feelings and attitudes toward sexuality. Parents of DS think that their children will give birth to offspring with disabilities, will be incapable of adequate parenting, will not understand the legal implications of marriage and parenting, and will be unable to bond. Individuals with DS are rarely provided with the choice to express sexuality. They are deprived of privacy and knowledge. These findings are similar to a study conducted in Poland by Barg [36] where 70% of girls with DS recruited in the study had menarche.

Acknowledgement:
Authors appreciate the time and effort given by patients and their families who participated in this study.
Authors would also like to thank Mrs Ann Arieus for her efforts in language editing and proof reading of the manuscript.
The Authors of this article declare no conflicts of interest regarding the current work