“As with individuals without intellectual disabilities, the timetable forbiological maturityfor individuals with intellectual disabilities usually coincides with theirchronological age.” (AAP,1996)

The differences in maturity between individuals with intellectualdisabilitiesand same-age peers without disabilities are social and emotional maturity,and lifeexperiences. “Parents and family members are the first,most influential and most important sex educators of young children.” (Leslie Walker-Hirsch, 2007)

1. DEVELOPMENTAL STAGES:(Consider developmentability to understand)

  • Before Birth: Sex organ development is determined.
  • After Birth: Other influences determine sexuality (social opportunities surroundings, how child is brought up).
  • Preschoolers (Ages 3-5) or according to child’s developmental ability): Child begins to initiate activities, develop conscience sexual identity—child begins to learn about his/her own body. Teach proper names of body parts which parts are private vs. public—discuss “touching” “safety” issues. Offer choices to help in decision making; begin teaching about special needs self- care skills. There may be an interest in basic sexuality. Child may observe differences in boys and girls. Set limits to exploration according to family culture values. Asks basic questions like “Where do babies come from?”
  • School-Age (Ages 6-11 or according to child’s developmental ability): Child is developing a sense of self-worth and builds on past experiences. Assess child’s knowledge of special needs continue teaching self-care/self-advocacy skills. Begins to understand modesty & responsibility for own body. Learn boundaries and prepare for puberty.Encourage socialization/recreational activities & friendships. Build on decision making skills—offerchoices teach consequences of actions(AHTP, 1995). Child is more interested in what takes place sexually between adults is beginning to understand relationships. Help child understand sexuality in a healthy way as this will affect adult relationships.“Explain that liking or loving someone does not depend on the person’s gender is different from liking someone sexually” (AAP, 2000). Questions are more complex like “How do people do it?”
  • Adolescent (Ages 12-18 or according to child’s developmental ability): Developing self-image under role model & peer pressure--expect a change in childhood friendships. Assess knowledge of special needs fill in gaps in understanding. Modesty and privacy issues becoming more important.Teach age-appropriate self-help/self-advocacy skills. Involve teen more in medical care IEP’s as much as possible. Help identify build on strengths; involve in groups other activities. (AHTP, 1995). Talk about relationships, sexualitydelaying sexual intercourse until older. Discuss contraception sexually transmitted diseases how to protect oneself from them from pregnancy. Help youth to be sexually responsible. The adolescent needs to know there is always a reliable, honest source he/she can go to for answers (parent or trusted health professional). over
  • Young Adult (ages 18-21 or according to child’s developmental ability): Learns to make personal commitment to another person. Encourage participation in groups, recreation in transition planning to adult life activities. (AHTP, 1995). People with disabilities tend to develop friendships & relationships with those who have had similar personal or life experiences.Discuss sexual intercourse, contraception STD’s--verify understanding. Teach child to be sexually responsible. Youth need to know there is always a reliable, honest source to go to for answers (family member or trusted health professional).

2. AT WHAT AGE SHOULD THE SEXUALITY TALK BEGIN?

“Sexuality is a part of every person’s life, no matter what the age” (AAP, 2000). Children usually start this process by giggling with friends about “private parts,” sharing “dirty jokes,” and begin looking in books to satisfy curiosity. The point is, when it is time, the parent or professional needs to be ready, even if they have to initiate the discussion. It may help to review chart below:

Initiating a Talk about Relationships and Sexuality for Individuals with Developmental Disabilities (Sloan et al., 1993)

  • Individualize teaching: Parents and professionals should take the lead. Educate about sexuality related to the disability—everyone has needs, they just may express them differently. Discuss “public vs. private.”
  • Begin at the individual’s level of understanding: Find out what youth already know. Keep the talk brief and basic, only what they need to know. Listen, and verify understanding frequently. Repeat.
  • Let youth know it is acceptable to be open: Do not make the youth ashamed for being curious. Explain that it is normal for people with disabilities to have sexual drives and needs. Be approachable, and bring up important sexual topics (i.e. how to be safe, birth control, sexually transmitted diseases, boundaries/private parts, masturbation, preventing violence or abuse, choice of partners and childbirth.
  • Be honest and straight forward, but do not lecture: Get in touch with your own feelings on sexuality. Try not to be too embarrassed or too serious (this is not about you). Teach anytime an opportunity occurs (i.e., bath time, watching TV., discussing a current event).
  • Use real names for sexual organs: Helpful in the future for individuals to know the names of their body parts, especially they go to their physician alone.
  • Role play social situations to help prevent exploitation or potential abuse: Parents.caregivers or a trusted adult can reinforce concepts by practicing with a youth at home. Let the individulas know it is ok to ask questions if they hear something different than what was discussed.
  • Bring up the importance of being friends and developing relationships: Some people may not understand what friendship means. Provide social and recreational opportunities where people with “like interests” can safely meet.

3. SEXUALTIY & DEVELOPMENT REFERENCES

  • Adolescent Health Transition Project. (1995). Center on Human Development and Disability, University of Washington. Retrieved April, 2007 from
  • American Academy of Pediatrics. (2000). Patenting Corner Q & A: Talking with Your Young Child About Sex. Retrieved March, 2007 from
  • Couwenhoven, T. (2007). Teaching Children with Down Syndrome about Their Bodies, Boundaries, and Sexuality. Bethesda, MD: Woodbine House, Inc.
  • Sloan, S. (1994). Sexuality and the Person with Spina Bifida. Washington, DC: Spina Bifida Association of America
  • Walker-Hirsch, L. (2007). The Facts of Life…and More. Baltimore, MD: Paul H. Brooks Publishing Co.

Susan Labhard, MSN, RN-Transitions Nurse Specialist

Shriners Hospital for Children-Portland, OR

(503) 241-5090x1140

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