Impact Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities

The word "sexuality" is an emotionally-loaded one! The word "disability" is also. What happens when they are combined?

Many people want to equate sexuality education with permission to be sexually active. This is not so!! Sexuality education is the opportunity to learn, understand, and practice what it means to be either a man or woman in the culture and time in which we are living. And it's an opportunity to receive instruction about how to live happily, safely, and responsibly as an adult.

In the bad old days, sexuality and disability were rarely paired together in polite discussion. The view was that it was not acceptable to discuss sexuality openly. And people with disabilities were frequently hidden away and not mentioned either. Since that time, we have learned much about the benefit of talking about sexuality, and much has changed about how people with a disability are perceived.

Parents no longer ask, "How can I stop sexuality from developing in my child with an intellectual disability?" Instead we are asking, "How can I help my child with an intellectual disability express sexuality in a way that is consistent with his or her ability and within the standards of the community in which we live?" A much better question!!

Social/Sexual Development

Sexuality is an inherent and important aspect of everyone's personality and is not tied to IQ. However, there are both similarities and differences between how typical children's sexuality develops and how sexuality develops among children with intellectual disabilities.

Physical development of children both with and without an intellectual disability is quite similar, with puberty likely to occur earlier than in past generations for both groups. Although the biological maturity of young people with an intellectual disability is likely to keep pace with that of typical children, the social, emotional, intellectual and experiential maturity is most likely to lag behind that of typical children. The implication of this situation is that there is now a greater than ever disparity between biological age and social, emotional, intellectual and experiential age for children with intellectual disabilities. Children with intellectual disabilities are being asked at a younger age to respond socially and emotionally to a physical body that is likely to be much more developed than the rest of their abilities. Additionally, these same young people are included with same chronological-aged children in schools and social activities. They are expected to cope and behave as appropriately as their same-age peers without disabilities. When that does not happen, schools and families get together to figure out what to do, but are often at a loss: Everyone wants to include the child with an intellectual disability, but also wants that child to be protected from making serious errors related to sexuality, and from being victimized by others who may try to take advantage of the child's sexual vulnerability.

Colleges and universities typically do not include sexuality education of children and teens with intellectual disabilities in the required preparation of special education teachers, or social workers and psychologists either for that matter. While special education teachers are well-versed in the aspects of addressing the unique learning styles of their students and the variety of teaching methods that have proven successful, they are not equipped, not comfortable, and often not permitted by their school boards to provide sexuality education to their students. Health education teachers are charged with providing sexuality education to their typical students and are well prepared to do that successfully, but they are not skilled at using the special education teaching strategies to teach students who learn differently. Consequently, there is a gap into which many students fall.

Sexuality education for school-aged children with intellectual disabilities is an important aspect of their social education that can get overlooked in lieu of academic skills. What would constitute a meaningful sexuality education for this group of children and teens? They need similar information to that of typically- developing peers, but the emphasis and teaching strategies need to be different. The "soft skills" and the development of social judgment ought to be a higher priority than reproductive system information. The opportunity for repetition of concepts and rehearsal of the associated behaviors needs to be built into a safe, judgment-free environment where they can effectively practice social, interactive and relationship skills. 

Six Key Components of Meaningful Sexuality Education

Social and sexuality education must successfully address each of the following six key components, using teaching strategies that are age and ability appropriate. It must stress the learning strengths of the child and provide opportunity for repetition and practice of the social skills needed for success. The six components are as follows:

• Adult Self-Care: Grooming, toileting, dressing and accomplishing age-related hygiene and personal care.
• Anatomy and Physiology: Biological and physical aspects of sexual body functions and names, and distinguishing sexual anatomy from other body parts.
• Empowerment: The self-determination and self-valuing that the child is internalizing, and the influence that child can exercise in determining the extent to which he or she can be in charge of life choices.
• Relationships: Differentiating the social boundaries of the various relationships that a child is likely to have, and the requirement to adjust his or her behavior accordingly in the domains of touch, talk, trust and others.
• Social Skills: The ordinary skills of manners and politeness, as well as the skills of expressing affection to others and welcoming or rejecting affection expressed to them by others.
• Social Opportunity: The kinds of friendships, recreation and community participation that are available to each child. It must be matched to the social mastery of the child and his or her degree of independence. It must reflect the risk tolerance of the child and family as well as the benefit of that participation.

 Parents' Roles

What can a parent do to assure that this kind of meaningful sexuality education is offered to their child? The following are some suggested actions:

• Be part of your child's team with teachers and/or professionals to develop a realistic plan for your child's social, educational, and recreational needs. Suggest a Social Development and Sexuality section in your child's IEP, IHP or other planning tool.
• Make sure your child knows that it is always safe to discuss any aspect of his or her life with you without fear that you will be punitive, judgmental or mocking.
• Support school-sponsored inclusive social events, as well as specialized social and recreational activities, by being an active volunteer.
• Be a role model to your child by demonstrating honesty, respect and appropriateness in your own relationships.
• Raise your child's awareness of appropriate social behaviors and boundaries by complimenting positive social interactions in which you see him or her engaged.
• Use the "teachable moment" as a learning opportunity about relationships and sexuality when watching TV or a movie, or spending informal time with your child.
• Participate in opportunities for parents to review sexuality education curricula that are being considered by your child's school district, and/or suggest curricula that are already available for learners with unique learning styles and special educational needs.
• If meaningful sexuality education is not offered at your school, help your child to access it in other locations in your area, such as the "Y", a family planning agency or an advocacy organization.
• Learn more about sexuality and intellectual disability by reading recommended works, and attending workshops by credible organizations such as Arc chapters, affiliates of the National Down Syndrome Society, Planned Parenthood, Parent Training and Information Centers, or your local college or university.
• Work one-to-one with your child to practice self-care related to sexual maturing, such as during menses, and prepare your child for the changes that will happen physically and emotionally as puberty advances. Be sure to emphasize the social skills associated with private self-care.
• Provide both medical and adult slang terminology related to sexual anatomy, and discuss when and with whom each kind of language is appropriate to use. Remind your child that sexual words must not be used to express anger or hurt another's feelings.
• Empower your child by providing opportunities for making decisions that grow with the maturing child, decisions such as what to have for lunch, what color sweater to wear, and who to invite to a movie.
• Know the signs of sexual abuse and know what to do if you suspect your child has been a victim (for more see Impact: Feature Issue on Violence Against Women with Developmental Disabilities ).
• If needed, do not hesitate to get professional help for your child in this aspect of development.
• And above all respect your child's sexuality as he or she moves toward maturity and into a safe, responsible, and satisfying adult life.

 Conclusion

When sexuality education is provided to children and teens with intellectual disabilities in a way that they can understand and use, their teachers and families have reported improved social behavior and expect they will be safer from sexual ridicule and exploitation. When planning for a child's educational and social future, it is crucial to include meaningful sexuality education.