Healthy sexual development is important for adolescents with and without disabilities, yet the topic of sexuality is often ignored in the disabled population. Adolescents with mild or moderate degrees of disability have rates of sexual activity and reproductive health needs comparable to their typically developing peers. Their need for support, risk reduction, and education in sexual health may exceed that of their peers. The medical provider may support healthy sexual development through education, anticipatory guidance, menstrual and contraceptive management, and by expanding the notion of sexuality to include a broader conceptualization of sexual behavior and expression.
Key points
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Sexuality is a topic that may be neglected in adolescents with disabilities, despite evidence that their needs are often similar to or greater than those of their typically developing peers.
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Several hormonal treatment options are available to assist with menstrual management and provide contraception.
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Medical providers may facilitate healthy sexual development in adolescents with disabilities by initiating conversations with patients and caregivers about sexuality.
Introduction
When caring for adolescents, providers may feel ill equipped to address issues of sexuality. In part, this may reflect the tendency to equate “sexuality” with “sexual intercourse.” Sexual development is a multidimensional process that spans childhood, adolescence, and adulthood. Young children explore gender expression, discover body parts, and learn to respect others’ personal space. Children of all ages witness and process the sexual images and relationships seen in their environment. Adolescents undergo the changes of puberty, experience sexual feelings and desires, and develop the capacity for intimacy and reproduction. The process sometimes proves challenging for adolescents and their caregivers, but it ultimately contributes greatly to the adolescent’s sense of self, as well as providing a source of pleasure, bonding, and enhancement of human relationships.
Approximately 10% of youth in the United States report a physical, developmental, or sensory disability. The global prevalence of intellectual disability (ID), defined as IQ less than 70 to 75, is estimated at 1%, with most being in the mild range. Children and adolescents with disabilities have the same rights as those without disabilities, but many of these adolescents face challenges to the attainment of their right to healthy sexual development.
Historically, society has ignored or minimized the issue of sexuality in persons with disabilities. Beyond the deplorable eugenics movement of the early twentieth century, during which thousands of persons with disabilities underwent involuntary sterilization, practices of institutionalization and segregation persisted, limiting the opportunity for normal psychosocial development. Today, most children and adolescents with disabilities attend schools where they interact with typically developing (TD) peers during some or all of the school day, and adults are more likely to live and work in community settings. Nevertheless, when it comes to seeing disabled persons as sexual beings, society may still perceive them negatively and stereotypically, either as asexual or as hypersexual and unable to control their sexual urges. Medical education typically offers little instruction to new physicians on how to support and foster healthy sexuality in persons with disabilities. Pediatricians are ideally suited to address these needs in youth with disabilities just as they support other aspects of normal adolescent growth and development.
Introduction
When caring for adolescents, providers may feel ill equipped to address issues of sexuality. In part, this may reflect the tendency to equate “sexuality” with “sexual intercourse.” Sexual development is a multidimensional process that spans childhood, adolescence, and adulthood. Young children explore gender expression, discover body parts, and learn to respect others’ personal space. Children of all ages witness and process the sexual images and relationships seen in their environment. Adolescents undergo the changes of puberty, experience sexual feelings and desires, and develop the capacity for intimacy and reproduction. The process sometimes proves challenging for adolescents and their caregivers, but it ultimately contributes greatly to the adolescent’s sense of self, as well as providing a source of pleasure, bonding, and enhancement of human relationships.
Approximately 10% of youth in the United States report a physical, developmental, or sensory disability. The global prevalence of intellectual disability (ID), defined as IQ less than 70 to 75, is estimated at 1%, with most being in the mild range. Children and adolescents with disabilities have the same rights as those without disabilities, but many of these adolescents face challenges to the attainment of their right to healthy sexual development.
Historically, society has ignored or minimized the issue of sexuality in persons with disabilities. Beyond the deplorable eugenics movement of the early twentieth century, during which thousands of persons with disabilities underwent involuntary sterilization, practices of institutionalization and segregation persisted, limiting the opportunity for normal psychosocial development. Today, most children and adolescents with disabilities attend schools where they interact with typically developing (TD) peers during some or all of the school day, and adults are more likely to live and work in community settings. Nevertheless, when it comes to seeing disabled persons as sexual beings, society may still perceive them negatively and stereotypically, either as asexual or as hypersexual and unable to control their sexual urges. Medical education typically offers little instruction to new physicians on how to support and foster healthy sexuality in persons with disabilities. Pediatricians are ideally suited to address these needs in youth with disabilities just as they support other aspects of normal adolescent growth and development.
Adolescents with physical disabilities
Adolescents with physical disabilities generally express positive desires, attitudes, and expectations about future sexual relationships. Although some studies suggest positive self-esteem, others indicate that persons with physical disabilities, particularly more severe impairments, experience poor body image, lower emotional well-being, and lower sexual self-esteem and satisfaction. In the National Longitudinal Study of Adolescent Health (Add Health), male and female high school students with mild physical disabilities reported higher rates of same-sex attraction than their unaffected peers. Attitudes toward sex were similar for girls with and without physical disabilities; however, those with disabilities reported more positive views toward pregnancy.
Socially, adolescents with physical disabilities report that they engage in less dating and fewer social activities than unaffected adolescents. Nonetheless, most studies find no significant differences in self-reported history of sexual intercourse or age of first sexual intercourse in physically disabled adolescents compared with their peers. In the Add Health study, adolescents with physical disabilities reported rates of sexual activity that were actually somewhat higher than their peers; unfortunately, for girls this reflected higher rates of both consensual and forced sex. Several other studies have similarly described increased reporting of dating violence and sexual abuse and assault in physically disabled persons. Adolescents with physical disabilities express concerns and a desire to discuss their sexuality with health professionals, but are less likely to have those conversations than their unaffected peers.
Cerebral Palsy
In a review focusing on social and sexual relationships of adolescents and young adults with cerebral palsy and normal intelligence, Wiegerink and colleagues found that romantic and sexual relationships were considered important but challenging to develop. These youth reported fewer social relationships, and delayed onset and lower frequency of dating. They report less experience with intimate relationships and sexual activity than their unaffected peers. Adults with cerebral palsy express a desire for more education on sexuality.
Myelomeningocele
Most adolescents with myelomeningocele indicate a desire to engage in sexual relationships, marry, and have children. Cromer and colleagues found that 28% of adolescents with myelomeningocele had engaged in sexual activity, compared with 60% of healthy controls. A more recent study of affected adolescents and young adults 16 to 25 years old found that 70% desired sexual contact, and 47% reported sexual contact, again reflecting significantly less sexual activity than their age-matched peers without disability. Young people with myelomeningocele express a strong desire for more information on sexual function. They report exposure to basic sex education, but receive very little that is specific to their condition. They express concerns about urinary incontinence and may wish to explore ways to achieve sexual pleasure if genital sensation is diminished, yet they are unlikely to initiate conversations about these concerns. Adolescent girls with myelomeningocele are usually fertile, but report low rates of contraception use and preconception counseling. This finding is particularly concerning, given the increased risk to a woman with myelomeningocele of bearing a child with a neural tube defect.
Adolescents with intellectual and developmental disabilities
Many adolescents and adults with ID describe their desires and aspirations for intimate relationships, sexual activity, and marriage. There is some inconsistency seen in reports of sexual activity in persons with ID, likely due to methodological differences in case definition and data collection between studies. In the Add Health study, adolescents with low cognitive abilities reported increased same-sex attraction and fewer experiences of romantic attraction and vaginal intercourse than TD adolescents; those who were sexually experienced reported lower rates of contraception use and higher rates of pregnancy and sexually transmitted infection (STI). In a clinical sample of adolescents with ID, Chamberlain and colleagues found that adolescent girls with mild-moderate ID reported rates of sexual activity comparable to that in the TD adolescent population; they, too, demonstrated increased rates of pregnancy. In a nationally representative survey of youth in the United States, Shandra and colleagues found that boys with learning disabilities or emotional disabilities were more likely to report having sex at younger ages and less likely to use condoms than other boys. Although precise estimates may be lacking, it is clear that sexual activity and its consequences are prevalent among adolescents with ID, particularly among those with mild-moderate disability.
Autism Spectrum Disorders
The social skills deficits and other features characteristic of autism spectrum disorders (ASD) may have a profound effect on sexual development; this challenge is further exacerbated in persons with cooccurrence of ID. Studies of high-functioning persons with ASD suggest differences in the experience of gender compared with control populations. Both adolescent boys and girls with ASD are more likely to be gender nonconforming and less likely to identify as heterosexual than TD peers. Adolescent boys with high-functioning ASD report lifetime sexual experiences comparable to their TD peers, with one-third reporting having had sex with a female partner. However, they report a lower frequency of experience with noncoital partnered sexual activity (eg, kissing, petting). Parents tended to underestimate their sons’ sexual experiences. Adults with ASD report a later age of sexual debut and lower rates of sexual experience, interest, and arousal than the typical adult population.
Not surprisingly, persons with ASD report challenges in the social aspects of sexual development and expression. They describe challenges with the process and expectations of courtship, and sending or receiving messages indicating interest in another. Boys with ASD are more likely than their TD peers to express regret after their first sexual experience. Adults describe challenges of sensory dysregulation during sexual contact, which may negatively impact the experience for both partners. A subset of persons with ASD demonstrates higher rates of problematic sexual behaviors, including inappropriate romantic gestures toward others, public displays of arousal, masturbation, or exhibitionism (see later discussion).
Inappropriate Sexual Behaviors
The cognitive and psychosocial skills of a youth with ID may lag significantly behind their physical maturity and sexual impulses. This discordance may lead to inappropriate sexual behaviors and subsequent societal discomfort. Public nudity, public masturbation, inappropriate handling of used menstrual products, and a general failure to recognize and respect personal boundaries may contribute to the stigma and exclusion from social activities often experienced by persons with ID. Adolescents with ID may spend play time with younger children, because they may share an interest in the same activities; inappropriate sexual behavior in this setting can lead to exclusion at best, and possibly involvement of child protection authorities.
Masturbation may be an appropriate outlet for sexual feelings and urges, and adolescents who engage in this should not be shamed or reprimanded when it occurs in the appropriate context and private setting. Interventions may be appropriate when masturbation is performed in public or is a frequent response to boredom or lack of stimulation, or if it takes the place of other, more prosocial activities. Behavioral management and sexuality education are the first-line treatments for inappropriate sexual or hypersexual behaviors. Pharmacologic intervention has been described, but is not recommended for routine use.
Sexual Abuse and Exploitation
It is well documented that youth with ID are at elevated risk of sexual abuse. Their desire for acceptance and conformity with TD peers may make them vulnerable to sexual exploitation, and they may have difficulty distinguishing between appropriate and inappropriate physical contact. They may lack the knowledge and communication skills needed to report abuse, or fear the consequences of disclosure. Adolescent boys with ID who were formerly abused themselves are at increased risk of perpetrating inappropriate sexual acts.
Caregivers’ Perspectives and Influence
It is understandable that caregivers of persons with ID express significant caution and concern when confronted with issues of sexuality. Parents tend to underestimate their ID child’s sexual activity and interest in sexual relationships. Mothers of young people with ID may acknowledge the importance of addressing their child’s sexuality, yet remain hesitant to initiate conversations about sex, intimate relationships, and contraception relative to mothers of TD youth. They express fear that discussing sex may encourage inappropriate sexual behavior, and that their child may not have the coping skills to deal with sexuality. The dissonance between perceived importance and parental behavior may be addressed through improved parental education and support.
Far from being protective, the hesitation of parents and caregivers to address a child’s sexuality may have a significant negative impact on psychosexual development. Caregivers’ silence on the issue suggests that sexuality is taboo; this may make the adolescent hesitant to seek information or ask questions about sex when they arise. Conversations that focus only on the negative aspects of sex may lead to negative views of sexuality that are internalized, contributing to a negative sexual self-concept and lower self-esteem. Adults with ID are more likely to report negative perceptions of sex and touch as wrong and unsafe. Women with ID are particularly likely to express these negative views, including fear of the sexual act, perceived lack of sexual pleasure, and fear of negative consequences of sex. An adolescent who is deprived of appropriate information and support of healthy sexuality may be more likely to engage in inappropriate sexual behaviors.
Sexuality education
Numerous studies have demonstrated the lack of adequate sexuality education provided to adolescents and adults with ID. The traditional “Sex Ed” curriculum provided to adolescents in the United States is heterogeneous at best: the quality and quantity of information provided are variable; information may be narrowly focused on sexual behaviors and their negative consequences; content is often based on a heteronormative framework and promotes gender stereotypes. The unique needs of the adolescent with a physical or intellectual disability are unlikely to be met.
Many formal curricula for persons with ID have been developed, and some have demonstrated an increase in knowledge among participants. However, none have been rigorously tested and validated with regard to their effect on sexual behavior and decision making. Outstanding resources for both formal and informal education on sexuality for persons with disabilities are available online. Components of an appropriate curriculum are listed in Box 1 .
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Content
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Simple but accurate terms for anatomy
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Physical boundaries
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Negotiating sexual situations
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Understanding and avoidance of sexual abuse and exploitation
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Same-sex and opposite-sex attraction
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Healthy sexual interactions (intercourse and noncoital alternatives)
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Assertiveness training (saying “No”)
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Safer sexual practices
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Pregnancy prevention
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Educational approach
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Strength-based versus deficit-based approach
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Simple, explicit, concrete language
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Use of pictures, anatomically correct dolls
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Frequent repetition
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Adaptability for developmental levels and health literacy
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Practice and role playing
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Incorporate experiential learning
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Avoidance of heteronormative approach
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Perhaps the even bigger challenge, however, is the inherent limitation of any formal curriculum to truly inform one’s understanding of sexuality. Much of what typical adolescents learn about sexuality is ultimately experiential, occurring in natural learning environments rather than a classroom. Young people grow up surrounded by both positive and negative sexual messages and media images that they internalize and process on conscious and subconscious levels. They engage with peers and romantic partners in both supervised and unsupervised settings, experimenting, gaining experience, and learning from their successes and mistakes. These experiences, along with formal education, religious and family values, and numerous other factors, are ultimately incorporated into the adolescent’s sexual self-concept.
Adolescents with ID may lack the cognitive skills to process the abstract and often conflicting messages in their environment. In those with medical comorbidities, experiences with examinations and treatment may impact their perceptions regarding privacy and physical boundaries. They infrequently see persons with disabilities portrayed in the media as desirable romantic partners. They generally have smaller social circles than TD adolescents. Caregivers, through appropriate and well-intentioned efforts to limit the risk of harm, may place strict limitations on social interactions and activities, particularly those with reduced levels of supervision. The disabled adolescent’s opportunities for experiential learning are limited, and those experiences are often disproportionately negative. In contrast to supporting healthy sexual development, caregivers may inadvertently impair psychosocial and sexual development by restricting opportunities for sexual exploration. This limitation of experiential learning may ultimately lead to a worse sexual self-concept and poor sexual decision-making skills in adulthood.
The role of the medical provider
Puberty and Menstruation
Puberty typically occurs within the expected timeframe, particularly for adolescents with an isolated congenital or acquired physical disability or idiopathic ID. Children with certain genetic syndromes or neurodevelopmental disabilities, including neural tube defects or major brain malformations, may experience premature adrenarche or pubarche. In many, these remain isolated changes; in others, they may progress to true precocious puberty. For children who have experienced nutritional deficiencies or failure to reach expected growth parameters due to their condition, puberty may occur later. Girls with ASD also may undergo somewhat delayed puberty and menarche.
Menstruation can be challenging for girls with special needs. They may need assistance changing pads, due to dexterity issues caused by physical disabilities, or limited understanding of the process in girls with ID. Pain and irregular bleeding, common in teenagers, may cause a significant burden for the patient and her caregivers, or limit her ability to participate in school or other activities. Most families learn to manage menstruation effectively, even for teens with severe disability. The medical provider should initiate anticipatory guidance about the menstrual periods once breast development starts, because there is typically 2 to 3 years between thelarche and the onset of menses. Hormonal treatment to prevent menarche, sometimes requested by caregivers, is generally not recommended because this may limit ongoing normal growth. Allowing menarche to occur also gives families an opportunity to see how the experience of the menstrual cycle affects the adolescent. Tips for managing menstrual periods are presented in Box 2 .
