The World Health Organization (WHO) published the first internationally accepted definition of sexual health in 1975: “Sexuality is an integral part of the personality of everyone: man, woman, and child. It is a basic need and an aspect of being human that cannot be separated from other aspects of human life. Sexuality is not synonymous with sexual intercourse (and it) influences thoughts, feelings, actions, and interactions and thereby our mental and physical health.” [Mace: 1974] These concepts remain part of most subsequent definitions. [Edwards: 2004] Children with special health care needs and chronic illnesses have similar needs for sexual health and contraception as other youth. [Committee: 2014]

The American Academy of Pediatrics (AAP) advises that pediatric clinicians discuss and provide education about pubertal development and sexual health and fertility for children and youth with special health care needs (CYSHCN) and guide families to communicate developmentally appropriate, accurate information in the home. Sexuality should be considered in a context that extends beyond genital sex to include gender-role socialization, physical maturation and body image, social relationships, and future social aspirations. [Blum: 1997]

Children with neurodevelopmental disabilities (NDD), and their families, face particular barriers to learning about normal sexuality and sexual development. These include commonly held myths that children and youth who have developmental disabilities are:

• Asexual
• Perpetual children and need to be protected
• Sexually impulsive, deviant, and “oversexed”
• Not intelligent enough to understand sexual desire and activity
• Not capable of intimate, emotional relationships

Other Names

ICD-10 Coding

• Z70, Counseling related to sexual attitude, behavior and orientation
• Z70.0, Counseling related to sexual attitude
• Z70.1, Counseling related to patient's sexual behavior and orientation
• Z70.2, Counseling related to sexual behavior and orientation of third party
• Z70.3, Counseling related to combined concerns regarding sexual attitude, behavior and orientation
• Z70.8, Other sex counseling
• Z70.9, Sex counseling, unspecified
• Z30.09, Encounter for other general counseling and advice on contraception

Need for information and protection at an earlier age
Children and youth with NND are at increased risk of having sex early. In addition, with up to 20% of girls with neurodevelopmental disabilities experiencing precious puberty, children with NND may need information and protection at an earlier age even if they are delayed in social maturity. [Murphy: 2006]

Do not assume sexual health has been taught in school
Barriers to safe sex education for CYSHCN include the perception by parents and physicians that the schools are teaching sexual health curriculum; however, this curriculum may not be adequately covered in regular or special education settings.

Risk of sexual abuse
CYSHCN, particularly those with intellectual disabilities, are at a greatly increased risk of abuse - 4 to 7 times higher than their peers due to lack of knowledge, dependence on others, and other factors. [Walters: 2018] As a result, an estimated 25% of children with disabilities will be a victim of child abuse or neglect at some point. [Brodie: 2017] A nationwide study of children with disabilities in American schools suggests that approximately two-thirds of maltreated students had experienced sexual maltreatment, and the majority of the incidences of maltreatment were committed by school personnel. [Caldas: 2014] Empowering children with knowledge about sexuality may help reduce these alarming rates of abuse.

It can be helpful to frame sexual health counseling by the patient’s age and intellectual and emotional maturity. For example, a child who is physically in puberty, but intellectually delayed, will need information about puberty presented in a way that is appropriate for their developmental age. For all children:

• Use correct terminology
• Inquire about sexual health topics that may include, but are not limited to, “anatomy, masturbation, menstruation, erections, nocturnal emissions (“wet dreams”), sexual fantasies, sexual orientation, and orgasms.” [Murphy: 2006]
• Provide relevant and specific information on how the child’s or teen’s disability affects his or her sexuality or fertility.
• Consult specialists if more information or support is needed to effectively communicate with the young person.

The information below summarizes sexual health topics and provides guidance based on age. The Sexuality Resource Center for Parents offers more in-depth information about typical sexual development at different stages of maturation, talking about sexual health and safety, and sexual development issues pertaining to children with special health care needs. This resource also has activities to help families engage their children in learning.

Sexual Health Developmental Milestones

Sex education is not associated with an earlier onset of sexual activity or increased risk-taking behavior. [Lindberg: 2012] Clinicians can encourage abstinence while providing anticipatory guidance and contraceptive access to adolescents considering sexual activity. Reproductive health information should be provided to all sexually active adolescents, including those who identify as LGBTQ. Research indicates that these sexual-minority adolescents are at higher risk for pregnancy than their peers due to earlier age of first sexual intercourse and more sexual partners. [Lindley: 2015] Similarly, adolescents with chronic medical conditions or developmental disabilities should receive similar sexual and reproductive health information, though it may need to be adapted to their developmental level. [Committee: 2014]

Additional resources on the Portal are Contraception & Menstrual Management and Caring for Transgender & Gender-Diverse Youth.

Integrate sexual and reproductive health and behavior topics into regular medical home visits by asking questions about feelings, beliefs, and behaviors, and provide anticipatory guidance. By the age of 19 or 20 years, most young people with mild-moderate intellectual disability will have had sex, and these individuals are more likely to have unsafe sex than their peers. Yet, CYSCHN often have less communication with their primary care providers and families about sexuality and sexual health than typically developing peers. [Baines: 2018] With the rates of sexual activity and sexual abuse for CYSHCN (particularly those with intellectual disabilities) similar to or even higher than those of “typically” developing peers, the primary care clinician should acknowledge the importance of healthy sexual and social development and educate CYSHCN and their families about issues related to:

• Gender identity and sexual expression
• Fertility, contraception, and abstinence
• Menstrual management
• Preventing sexually transmitted illnesses
• Reproductive rights and responsibilities
• Privacy
• Self-care
• Preventing and reporting sexual abuse

Recognize that caregivers for children with disabilities may not understand the typical processes of sexual development or proactively provide resources and information. See Resources, below. Include sexuality issues in staff training; be sure staff are prepared to deal with sexuality issues and know where to direct questions.

Screening

In accordance with the Bright Futures/AAP Periodicity Schedule for well-child checks, screen for depression at ages 12-21 and substance use disorders at ages 11-21 and provide surveillance about sexual health topics. The HEEADSSS Assessment Guide (USU) ( 1017 KB) provides examples of open-ended questions the clinician can ask adolescents about Home, Education/Employment, Eating, Activities, Drugs, Sexuality, Suicide/Depression, and Safety.

Lab Testing

Medications

Privacy

Safety

Values

Provide referrals as needed for behavioral health, gynecology/obstetrics, occupational therapy, adolescent medicine, social skills classes, endocrinology, child protective services, or other specialists.

Developmental - Behavioral Pediatrics (see UT providers [9])
Refer children with special health care needs when assistance is needed outside the medical home to assess and manage complex behavioral health concerns.

Gynecology: Pediatric/Adolescent; Special Needs (see UT providers [9])
In addition to what is available in the medical home, these subspecialists can provide gynecologic exams, contraception, STI testing, menstrual management, and pregnancy-related health care. It is helpful to work with a specialist who is comfortable with children with special health care needs and aware of ethical issues regarding their care.

Occupational Therapy (see UT providers [37])
Occupational therapists can help young people learn to take better care of their own bodies, including hygiene, toileting, and dressing. They also can help with adaptations for those with physical impairments affecting intimate relationships and sexual intercourse.

Adolescent Medicine (see UT providers [2])
Specialists in adolescent medicine may provide additional expertise in behavioral health, issues of sexuality and gender identity, and hormone therapy for transitioning between sexes.

Social Skills Training (see UT providers [44])
Refer children and adolescents for guidance on appropriate social interactions. Many of these groups serve children with neurodevelopmental disabilities such as autism spectrum disorders.

Pediatric Endocrinology (see UT providers [7])
Refer for consultation regarding evaluation and management of precocious or delayed puberty. Endocrinologists may also provide hormone therapy for transitioning between sexes.

Child Abuse Prevention & Intervention (see UT providers [31])
Contact these specialists when child abuse or neglect is suspected.