Sexuality Education for Youth with Disability or Chronic Illness
A Resource List
What do I need to know about youth with disabilities or chronic conditions and their sexuality?
Young people with disabilities are no different from other kids in their need to understand their bodies and relationships; they, too, need to undersand how their bodies work, and may have romantic longings and sexual interests. The following resources cover the many aspects of disability, love, sex and puberty in a responsible, open and affirming manner. Here is a good starting point and overview:
- Sexuality of Children and Adolescents With Developmental Disabilities—a 2006 policy statement from the American Academy of Pediatrics (AAP).
Where can I find information about sexuality and youth with disabilities?
Web Resources:
- Sexuality Education for Children and Youth with Disabilities is a 37-page NICHCY (National Information Clearinghouse for Children and Youth with Disabilities) News Digest. It gives a thorough overview of the topic, covering such issues as: the definition of sexuality, social skills, developmental stages, particular disabilities, sexual orientation, reproduction, birth control, STDs, and sexual exploitation.
- Sexuality and Developmental Disability: A Guide for Parents, from the Alberta, Canada web initiative teachingsexualhealth.ca, which was developed by educators and health professionals. The website offers up-to-date, evidence-based information and strategies for teachers and educators in four main areas: How To Teach, Lesson Plans, Teacher's Lounge and Resources. It is based on a theoretical framework that incorporates the Resilience, Social Learning and Comprehensive School Health models.
- Sterilization of Minors With Developmental Disabilities—a 1999 policy statement from the AAP.
- Introduction to Sexuality Education for Individuals Who Are Deaf-Blind and Significantly Developmentally Delayed—from the National Consortium on Deaf-Blindness. This is much like a curriculum, and provides good background and some specific content. While it is written about children and teens who are Deaf-Blind, it is also an excellent general disabilities resource. The chapters include an introduction, guidelines for developing a process for intervention and instruction, and topics such as modesty, appropriate touch and personal boundaries, menstruation, masturbation, sexual health care, sexual abuse, and a resources section. This is a 126-page document. If you are not able to download it due to its size, contact DB-Link about ordering a hard copy.
- Other sex education materials available from the National Consortium on Deaf-Blindness.
- Other sex education materials available from the National Consortium on Deaf-Blindness.
- Sexuality Education for Persons with Developmental Disabilities: Selected Resources, from dbpeds.org.
- Puberty and Children on the Autism Spectrum is part of The Autism Society of America’s (ASA) Living with Autism Series.
- Having a Daughter with a Disability: Is It Different for Girls? is a NICHCY News Digest. The section titled “Developing a Social World” addresses parenting issues related to disabled girls’ sexuality.
- Fact Sheet: Sexuality and Intellectual Disability, from American Association on Intellectual and Developmental Disabilities (AAIDD), answers many questions in an Q&A format
- Sexuality is a policy statement from the AAIDD. It deals with the rights and responsibilities of people with disabilities relating to sexuality.
- Sexuality Education for Children with Visual Impairments is a literature and instructional resource review.
- Sexuality: Your Sons and Daughters with Intellectual Disabilities, by Karin Melberg Schwier and Dave Hingsburger.
Focuses mainly on Down syndrome, but could be useful for a child with other intellectual disabilities as well.
- The Facts of Life... and More: Sexuality and Intimacy for People with Intellectual Disabilities, by Leslie Walker-Hirsch.
Written for professionals to enable them to support people with intellectual disabilities in making decisions regarding their sexuality. Presents issues in a broad, societal context, and covers areas like special education and sexuality education, sexuality and intellectual disability in our culture, types of treatment, education, and counseling, and consent, abuse, dysfunction and mental health.
- Abuse of Children and Adults With Disabilities: A Risk Reduction and Intervention Guidebook for Parents and Other Advocates, by Nora Baladerian.
Discusses the signs, symptoms and consequences of abuse, the abusers, how to report suspected abuse, intervention and provides examples of how to lower the risk of abuse.
- Teaching Children with Down Syndrome about Their Bodies, Boundaries, and Sexuality (Topics in Down Syndrome), by Terri Couwenhoven.
Easy-to-read guide that covers topics important for children of all ages, like emotions, personal space, self-care, appropriate levels of affection, and topics important for teens and young adults, like puberty, fertility, periods, bras, erections, and relating to the opposite sex.
- An Easy Guide for Caring Parents: Sexuality and Socialization: A Book for Parents of People with Mental Handicaps, by Lynn McKee and Virginia Blacklidge.
Addresses the social needs of kids with mental disabilities. Discusses the role of parents in their children's sexuality education. Includes a thorough discussion of sexual development and discusses topics like growing up, responsible sexual behavior, masturbation, social life, sexual orientation, fertility and birth control, sexual abuse, and marriage.
- An Easy Guide to Loving Carefully for Men and Women, 4th edition, by Lyn McKee, Winifred Kempton, Lynne Stiggall-Muccigrosso.
Written for individuals with limited reading and cognitive skills. Teaches about men’s and women’s bodies, sexual health and sexual feelings. Practical information about preventing pregnancy and sexually transmitted diseases.
- Enabling Romance: A Guide to Love, Sex, and Relationships for the Disabled (and the People who Care About Them), by Ken Kroll and Erica Levy Klein
Written by a husband and wife team-one of whom has a disability-this book debunks the myth that disabled equals asexual. The book includes candid personal stories and offers information on the social, romantic, and sexual requirements posed by a wide range of physical disabilities. Also contains resource lists. (Note: includes explicit illustrations.)
- Taking Charge: Teenagers Talk about Life and Physical Disabilities, by Kay Kriegsman, Elinor Zaslow and Jennifer D'Zmura-Rechsteiner.
Includes chapters on the topics of Communication, Independence, Relationships, Dating and Sexuality.
- Caution: Do Not Open Until Puberty! An Introduction to Sexuality for Young People with Disabilities, by Rick Enright.
Written for kids with spina bifida, cerebral palsy, spinal cord injuries, muscular dystrophy, and other mobility disorders.
- Sex Education for Parents of Children with Autism Spectrum Disorder, by Mark Steege and Shannon L. Peck.
More about this book.
- A Training Manual for Direct Care Staff, by Mark Steege and Shannon L. Peck.
A manual designed to help direct care staff overcome their discomfort with the sexual behavior of individuals with mental retardation. More about this book.
- Social Skills & Sex Education – Self Care for the Developmentally Delayed Adult, from Steege Publications.
This set includes all that you need to give adults with intellectual disabilities their basic sex education and social skills training. It includes 2 cassette tapes, one on the body and its parts, the other on touch. It includes pictures to go with the tapes. The script is also included in case you want to do the instruction yourself. The final piece of the set is a list of questions you can ask to determine how much comprehension has resulted from the instruction. More about this set.
- Asperger's Syndrome And Sexuality: From Adolescence Through Adulthood, by Isabelle Henault.
- Doubly Silenced: Sexuality, Sexual Abuse and People with Developmental Disabilities, by Patricia Miles Patterson.
Published in 1991 by the Wisconsin Council on Developmental Disabilities.
- Easy for You to Say: Q and A's For Teens Living With Chronic Illness or Disabilities, by Miriam Kaufman
Practical information for teens and their families, including medical issues and sexuality. Offers "practical advice, straight talk and honest answers to questions that many would be too embarrassed to ask."
- Changes in You: A Clearly Illustrated, Simply Worded Explanation of the Changes of Puberty for Boys, and
Changes in You: A Clearly Illustrated, Simply Worded Explanation of the Changes of Puberty for Girls, both by Peggy C. Siegel.
Simple language, and easy to read.
- Sexuality and Disability—an annotated bibliography from SIECUS.
- Books for Parents—this annotated bibliography from SIECUS lists general books for parents about talking to children and teens about sexuality.
- SIECUS (Sexuality Information and Education Council of the United States) is a national, nonprofit organization, which affirms that sexuality is a natural and healthy part of living. SIECUS develops, collects, and disseminates information, promotes comprehensive education about sexuality, and advocates the right of individuals to make responsible sexual choices. Their website is an excellent source of general sexuality education information.
- SexEdLibrary is a project of SIECUS, and offers lesson plans, including lessons for parents.
- NICHCY (National Information Center for Children and Youth with Disabilities) publishes free, fact-filled newsletters, arranges workshops and speakers, and advises parents on the laws entitling children with disabilities to special education and other services. They also offer Spanish language resources. Their state resource sheets have listings of government programs, disability organizations, and more. Call 1-800-695-0285.
- Sexuality Education for Persons with Developmental Disabilities: Selected Resources, from dbpeds.org.
- Parent Centers provide training and information to parents of children with disabilities—from babies through young adults. This assistance helps parents better meet the educational needs of their children with disabilities. Find the Parent Training and Information Center nearest you.
- The ARC is a national organization of and for people with intellectual and developmental disabilities and their families. It is devoted to promoting and improving supports and services for people with intellectual and developmental disabilities and their families.
- The American Association on Intellectual and Developmental Disabilities (AAIDD) is an international organiazation of professionals and citizens concerned about intellectual and developmental disabilites.
- Developmental Delay
- Children with Chronic Conditions
- Genetic Syndromes
- Autism, Autistic Spectrum Disorders (ASD) and Pervasive Developmental Disorders (PDD)
- Asperger Syndrome
- Siblings of Kids with Special Needs
- Disorders of Sex Development (DSD)
Compiled by Kyla Boyse, RN. Reviewed by Lisa Engel Evans, MSW.
Updated July 2010
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U-M Health System Related Sites:
U-M C.S. Mott Children's Hospital
U-M Pediatrics
