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Sexuality & Children with Disabilities

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Overview

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

Gender identity
Intimacy
Relationships
Reproductive health
Sexual health

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

Pearls & Alerts

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.

Sexual Health Counseling at Well-Child Visits

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

Prepubertal

Starting at a young age, use correct words for body parts and clear up misunderstandings. Normalize self-exploration and teach responsibility for one’s body and actions before inappropriate behavior occurs by educating about public vs. private behaviors and social norms. Discuss the difference between healthy and abusive touch; at a very young age, teach children that they can say “no” to unwanted touch. Some children with special health care needs experience the onset of secondary sexual characteristics earlier or later than other children; provide guidance and reassurance when able and initiate further work-up if unsure.
A good starting point is Sexual Development from 0–18 Years Old, which provides an overview of sexual developmental milestones for each of the following age groups: 0-18 months, 18 months-3 years, 3-5 years, 5-6 years, 6-9 years, 9-14 years, and 14-18 years.

Early Adolescence

Early adolescence (generally ages 11-14) begins with the onset of puberty and accompanying physical and emotional changes. Intercourse at this age is uncommon; sexual activity alerts the clinician to an unsafe situation. Introducing sexual health topics at well-child visits often begins with the discussion of pubertal changes and normalizing differences in body shapes and sexual orientation. To ensure children feel comfortable discussing reproductive health and sexuality, it is important to establish a rapport with the child and their caregivers to facilitate confidentiality (see Confidentiality, below). The clinician can help normalize pubertal changes, encourage abstinence, provide anticipatory guidance, and gauge the teen’s understanding of sex. [Richards: 2016] Involvement of trusted adults to discuss healthy behaviors, relationships, and consent with the adolescent is encouraged.
For girls who are dependent on caregivers for hygiene, talk with families so they understand when to expect menses to start and the options for managing menses. [Quint: 2016] Additional resources on the Portal: Puberty and Pubertal Variations and Caring for Transgender & Gender-Diverse Youth.

Middle Adolescence

Exploration of identity and independence begins in middle adolescence (generally ages 14-17). This is an important age to provide a safe space to talk about gender identity and sexual orientation, develop an understanding of healthy, consensual relationships, and disclose exploitative relationships or abuse. Teens typically do not seek sexual health care until after first intercourse, which increases their risk of sexually transmitted infections and unintended pregnancy. Offering teen-friendly resources, like pamphlets and websites written for teens, can encourage independence and help the teen to feel more involved in their care. Look at all potential patient education materials before using them to consider whether the content and format are appropriate for the learning style and developmental age of the individual.
A good resource to help with talking about sexual health and development for families of youth with developmental disabilities is For Parents of Children with Developmental Disabilities. Additional resources on the Portal are Contraception & Menstrual Management and Caring for Transgender & Gender-Diverse Youth.

Late Adolescence

About 71% of adolescents have had sexual intercourse by age 19. [Richards: 2016] Older teens have likely been exposed to varied information concerning contraception and sexual health, which can range from current and factual to objectively false. Discuss this with them. Correct any misinformation and reinforce evidence-based information. Ask about goals for the future, specifically plans for starting a family and if this is something they desire. Counsel sexually active teens to always use condoms as a dual method to prevent pregnancy and sexually transmitted diseases. Providers should be aware that state laws may impact marriage contracts and parental rights for individuals with developmental disabilities. Encourage genetic counseling if there is question about potentially passing on a condition to future children. For teens with physical disabilities, help them understand that they can have a healthy sex life if they are willing to be flexible, creative, and communicate with their partner. Refer families to the Sexuality Resource Center for Parents for more information on talking with teens with developmental or physical disabilities about sexual health and relationships.
For teens and young adults with physical disabilities or chronic pain, primary care providers and parents generally can provide the same sexual health information as for typically developing young people. However, many young people with physical disabilities or chronic pain have additional questions about intimate relationships and what kind of accommodations they might need in order to have fulfilling, safe sex. Sex and Physical Disabilities is a helpful resource for parents and teens.

Reproductive Health at Well-Child Visits

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.

Role of the Medical Home

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 (PDF Document 119 KB) 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) (PDF Document 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

Consider routine testing for pregnancy and sexually transmitted infections in vulnerable young people.

Medications

Be aware of medication side-effects that can affect sexual health. For example, some seizure medications decrease the effectiveness of contraception (see Contraception & Menstrual Management), and some antidepressants can cause sexual dysfunction.

Privacy

Discuss the young person’s need for privacy. Demonstrate respect for their personal space and ability to make decisions. Involve the young person in managing his or her own personal hygiene and making choices about appearance. Provide education about public vs. private behaviors and social norms before inappropriate behavior or a crisis occurs.

Safety

Continue to inquire about unwanted or abusive touch. Ask about Internet access, including social media sites and pornography. Consider self-defense classes.

Values

Incorporate the young person’s family members in providing education about values. Make sure you understand any differences between your personal beliefs and factual information.

Subspecialist Collaboration

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 NM providers [2])
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 NM providers [0])
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 NM providers [17])
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 NM providers [1])
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 NM providers [2])
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 NM providers [4])
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 NM providers [12])
Contact these specialists when child abuse or neglect is suspected.

Resources

Information & Support

Related content on the Portal includes Puberty and Pubertal Variations and Contraception & Menstrual Management.

For Professionals

Adolescent Sexual Health (AAP)
Assists and supports in the delivery of sexual and reproductive health services to adolescents and young adults. Provides guidance on recommended services, approaches to addressing important clinical issues, and resources for patients and families on how to optimize the health of adolescents and young adults and reduce risk-taking behaviors; American Academy of Pediatrics.

Deaf-Blindness Sex Education (National Center on Deaf-Blindness)
Guidance for parents and professionals delivering sex education to those who are deaf-blind. Appropriate sexual behavior, social-sexual behavior, appropriate touch, dating, modesty, and sexual abuse prevention are some of the topics discussed.

Adolescent Health Curriculum (PRH)
A comprehensive, evidence-based curriculum for residency programs, youth-serving health professionals, and self-guided learners with PowerPoint modules and patient standardized case videos that are free to use, edit, and share; Physicians for Reproductive Health.

For Parents and Patients

Sexuality Resource Center for Parents
Tools, tips, and tricks for parents to provide sexual education for typically developing kids as well as those with developmental and physical disabilities.

Sexual Health Education for Young People with Disabilities (Advocates for Youth)
Sex education materials for physically, emotionally, and mentally challenged youth.

Learning to Savor a Full Life, Love Life Included (New York Times)
An article about 2 adults with Down syndrome who were coached in dating, romance, and physical intimacy by a social service agency to promote healthy sexuality for people with intellectual and related disabilities.

Deaf-Blindness Sex Education (National Center on Deaf-Blindness)
Guidance for parents and professionals delivering sex education to those who are deaf-blind. Appropriate sexual behavior, social-sexual behavior, appropriate touch, dating, modesty, and sexual abuse prevention are some of the topics discussed.

Sexuality Education for Those with Developmental Disabilities (Florida Developmental Disabilities Council)
This downloadable, 64-page manual and resource guide helps parents and caregivers assist individuals with intellectual or developmental disabilities in their exploration of self and sexuality.

Patient Education

Sexuality Education for Students with Disabilities (Center for Parent Information & Resources)
An extensive resource page with information about sexuality education for families, schools, and children and youth with various special health care needs.

Sexual Education Resources (RespectAbility)
Sex education resources for a range of ages, including materials (books, articles, curriculum, videos) about the body, hygiene, dating, sexuality, reproductive health, and how to prevent victimization. This resource lists materials about hygiene, bodies, puberty, masturbation, social skills, relationships, safety, preventing abuse, etc. While some of the material is oriented for individuals with disabilities, there are also resources pertaining to people with specific diagnoses including Down syndrome, autism, and intellectual disabilities.

A Parent's Guide to Puberty for Children with Disabilities (LEND) (PDF Document 7 KB)
Toolkits for parents to help adolescents with disabilities learn about puberty, personal hygiene, acceptable public behavior, and peer relations. Offers versions for girls and boys with disabilities and some translations; Vanderbilt Leadership Education in Neurodevelopmental Disabilities.

Tools

HEEADSSS Assessment Guide (USU) (PDF Document 1017 KB)
Examples of open-ended questions the clinician can ask adolescents about Home, Education/Employment, Eating, Activities, Drugs, Sexuality, Suicide/Depression, and Safety.

Services for Patients & Families in New Mexico (NM)

For services not listed above, browse our Services categories or search our database.

* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.

Helpful Articles

Murphy NA, Elias ER.
Sexuality of children and adolescents with developmental disabilities.
Pediatrics. 2006;118(1):398-403. PubMed abstract / Full Text
This American Academy of Pediatrics' Clinical Report provides additional information and guidance for providers relating to puberty, psychosocial considerations, sexual abuse, sexuality education, and the pediatrician's role.

Breuner CC, Mattson G.
Sexuality education for children and adolescents.
Pediatrics. 2016;138(2). PubMed abstract / Full Text
An American Academy of Pediatrics Clinical Report that provides research on evidence-based sexual and reproductive health education, including intimate relationships, human sexual anatomy, sexual reproduction, sexually transmitted infections, sexual activity, sexual orientation, gender identity, abstinence, contraception, and reproductive rights and responsibilities. Pertains to youth with and without chronic health care conditions.

Walters FP, Gray SH.
Addressing sexual and reproductive health in adolescents and young adults with intellectual and developmental disabilities.
Curr Opin Pediatr. 2018;30(4):451-458. PubMed abstract
This review provides support for promoting the sexual and reproductive health of adolescents and young adults with developmental disabilities, and particularly those with intellectual disabilities, and offers guidance and resources for pediatricians on incorporating counseling on sexuality and reproductive healthcare, socially appropriate behavior, and sexual abuse prevention for adolescents and young adults with developmental disabilities into healthcare visits.

Brodie N, McColgan MD, Spector ND, Turchi RM.
Child Abuse in Children and Youth with Special Health Care Needs.
Pediatr Rev. 2017;38(10):463-470. PubMed abstract
This article discusses child abuse and neglect in children with special health care needs, how to differentiate the findings associated with physical abuse from those of accidental injury or illness, and how to prevent child abuse in children with special health care needs.

Chadi N, Amaria K, Kaufman M.
Expand your HEADS, follow the THRxEADS!.
Paediatr Child Health. 2017;22(1):23-25. PubMed abstract / Full Text
The authors present a new mnemonic, THRxEADS (T for Transition, H for Home, Rx for Medication and Treatment, E for Education and Eating, A for Activities and Affect, D for Drugs and S for Sexuality), which can be used as a complement to the adolescent HEADS (Home-Education-Activities-Drugs-Sexuality) assessment as a clinical tool to explore key issues that are often not covered in subspecialty clinic visits such as transition, coping, adherence and understanding of illness, as they apply to youth with special health care needs.

Authors & Reviewers

Initial publication: June 2020
Current Authors and Reviewers:
Author: Jennifer Goldman, MD, MRP, FAAP
Contributing Author: Rebekah Birdsall, DNP-WHNP
Reviewer: Nancy Murphy, MD, FAAP, FAAPMR

Page Bibliography

Baines S, Emerson E, Robertson J, Hatton C.
Sexual activity and sexual health among young adults with and without mild/moderate intellectual disability.
BMC Public Health. 2018;18(1):667. PubMed abstract / Full Text
This article explains that most young people with mild/moderate intellectual disabilities have sex and are more likely to have unsafe sex than their peers. The authors urge educators and clinicians to operate on the assumption that most young people with mild/moderate intellectual disabilities will have sex.

Blum RW.
Sexual health contraceptive needs of adolescents with chronic conditions.
Arch Pediatr Adolesc Med. 1997;151(3):290-7. PubMed abstract

Brodie N, McColgan MD, Spector ND, Turchi RM.
Child Abuse in Children and Youth with Special Health Care Needs.
Pediatr Rev. 2017;38(10):463-470. PubMed abstract
This article discusses child abuse and neglect in children with special health care needs, how to differentiate the findings associated with physical abuse from those of accidental injury or illness, and how to prevent child abuse in children with special health care needs.

Caldas SJ, Bensy ML.
The sexual maltreatment of students with disabilities in American school settings.
J Child Sex Abus. 2014;23(4):345-66. PubMed abstract
This study presents results from the first nationwide survey of students with disabilities who were sexually maltreated in American schools.

Committee on Adolescence.
Contraception for adolescents.
Pediatrics. 2014;134(4):e1244-56. PubMed abstract / Full Text

Edwards WM, Coleman E.
Defining sexual health: a descriptive overview.
Arch Sex Behav. 2004;33(3):189-95. PubMed abstract

Lindberg LD, Maddow-Zimet I.
Consequences of sex education on teen and young adult sexual behaviors and outcomes.
J Adolesc Health. 2012;51(4):332-8. PubMed abstract

Lindley LL, Walsemann KM.
Sexual Orientation and Risk of Pregnancy Among New York City High-School Students.
Am J Public Health. 2015;105(7):1379-86. PubMed abstract / Full Text

Mace DR, Bannerman RHO, BurtonJ, World Health Organization.
The teaching of human sexuality in schools for health professionals.
Public Health Pap. 1974;0(57):7-47. PubMed abstract

Murphy NA, Elias ER.
Sexuality of children and adolescents with developmental disabilities.
Pediatrics. 2006;118(1):398-403. PubMed abstract / Full Text
This American Academy of Pediatrics' Clinical Report provides additional information and guidance for providers relating to puberty, psychosocial considerations, sexual abuse, sexuality education, and the pediatrician's role.

Quint EH, O'Brien RF.
Menstrual Management for Adolescents With Disabilities.
Pediatrics. 2016;138(1). PubMed abstract
This policy from the American Academy of Pediatrics Committee on Adolescence and the North American Society for Pediatric and Adolescent Gynecology is designed to help guide pediatricians in assisting adolescent females with intellectual and/or physical disabilities and their families in making decisions related to successfully navigating menstruation.

Richards MJ, Buyers E.
Update on Adolescent Contraception.
Adv Pediatr. 2016;63(1):429-51. PubMed abstract

Walters FP, Gray SH.
Addressing sexual and reproductive health in adolescents and young adults with intellectual and developmental disabilities.
Curr Opin Pediatr. 2018;30(4):451-458. PubMed abstract
This review provides support for promoting the sexual and reproductive health of adolescents and young adults with developmental disabilities, and particularly those with intellectual disabilities, and offers guidance and resources for pediatricians on incorporating counseling on sexuality and reproductive healthcare, socially appropriate behavior, and sexual abuse prevention for adolescents and young adults with developmental disabilities into healthcare visits.