The importance of human sexuality education for students with disabilities.

"Carla Tate: I wonder who thought up sex? Daniel McMann: I think it was Madonna."--The Other Sister

What does it mean to provide sexuality education to children and adolescents with special needs?

Providing comprehensive sexuality education to children, teens, and young adults with special needs is a particularly important but often daunting task.

For people with disabilities, obstacles to healthy sexuality are often heightened. For young people with special needs there is particular tension between healthy sexuality and personal safety, and frequently, the desire to keep our children safe also unintentionally keeps them dangerously in the dark. Children with special needs are vulnerable to societal myths and misconceptions; they are taught to be compliant to authority; and they are at higher risk for sexual abuse.

However, human sexuality education for children with intellectual disabilities has tangible and documented benefits. These include improved social skills, assertiveness, and independence; positive changes in behavior, such as adopting more acceptable expressions of sexuality; as well as reduced risk of sexual abuse, sexually transmitted infections, and unintended pregnancy. Preparing youngsters for the responsibilities and choices of adulthood helps them to live, work, and socialize in personally meaningful ways within the community. A simultaneous goal for families and educators is to keep teens safe as they learn to negotiate this path.

Fear and Avoidance, Denial, and Doubt

Unfortunately, people with developmental disabilities typically do not acquire adequate knowledge regarding sexuality. Even though sexuality is a universal human trait, sexual expression on the part of people with disabilities can provoke strong negative reactions. The "rules" surrounding sexuality for individuals with disabilities are frequently not the same as those imposed on the rest of society.

Although human sexuality is varied and complex, in the educational realm this broad subject often becomes focused upon the narrow concept of sexual intercourse, the realities of which provoke understandable concern by adults on behalf of the youngsters in their care.

At a personal level, discussing sex and sexuality with any child can make parents and educators uncomfortable, and in the particular case of youngsters with special needs, anxieties and concerns are frequently intensified. Cultural, ethical, religious, and moral issues influence sexuality, and as such, prescribed sex education is notoriously controversial. Parents, community leaders, educators and teens may find themselves at odds over information and attitudes they consider appropriate.

Some parents and institutions avoid sex education in the belief that a child or teen who doesn't know about sex will have no desire to express his or her sexuality. Many caregivers struggle with presenting difficult concepts in ways that youngsters with special needs might understand and after failed attempts may give up altogether. In general, sexuality in people with developmental disabilities is commonly regarded as a problem, rather than an affirming part of human life.

But by beginning early and through practice and repetition and a positive attitude, parents can overcome some of the common awkwardness associated with the topic. It's never too early to learn the correct names for body parts, for example. Caregivers can arm themselves with a firm knowledge base, learn to convey information over time, and continue to seek professional support.

Myths and Stereotypes

At the community level, persistent myths and stereotypes still linger concerning the sexuality of people with disabilities. Common misconceptions include ideas that people with developmental disabilities are asexual--kind of like perpetual children or, conversely, that they are sexually impulsive.

Subscribing to such ideas is problematic. If people with developmental delays are seen as sexually impulsive, for example, offending behaviors are consequently considered uncontrollable. On the other hand, if the individual is viewed as child-like or asexual, sexually offensive behavior is likely to be denied or minimized. Both conclusions remove consequences from an individual's actions, in effect denying that person a chance to learn more appropriate sexual behavior.

The truth is that sexuality is an integral part of every person's life from infancy, and no matter what cognitive abilities a person might have, growth into adulthood combines a physically maturing body and a range of sexual and social needs and feelings. Furthermore, adults with developmental delays are notably different from children in appearance, past life events, and available life choices.

It is essential that all those who work and live with individuals with special needs guard against making inaccurate assumptions. By avoiding misinformation and a restrictive attitude towards the sexuality of individuals with developmental delays and by recognizing sexuality as a multidimensional process that crosses the lifespan, healthy sexuality can be championed and celebrated.

Socialization 

Families and educators need to recognize that comprehensive human sexuality education is more than the sum of facts about body parts and biology. Important goals of any human sexuality education program include promoting a positive self-image as well as developing competence and confidence in social abilities.

Unfortunately, youngsters with disabilities typically have fewer chances than their peers to develop and engage in appropriate social and sexual behavior. They are often held back by social isolation and functional limitations. By fostering the development of social skills, parents and educators can provide chances to learn about the social contexts of sexuality and the responsibilities of exploring and experiencing one's own sexuality.

There are a number of strategies for helping youngsters develop social skills. Role-play is a common educational tool and a valuable one for teaching, practicing, and reinforcing social skills. Modeling and play-acting a variety of social interaction, such as phone etiquette, initiating conversation, or inviting a friend for a meal, for example, are simple ways for families to help refine social skills at home.

The National Dissemination Center for Children with Disabilities (NICHCY) also recommends helping children develop hobbies and pursue interests or recreational activities in the community and after school. Although it's a common temptation to shield children from hurt feelings and rejection, children with disabilities nevertheless should be encouraged to engage in social opportunities and to grow and learn from social errors. As well as presenting occasion for friendship, extra-curricular activities and hobbies bring people together in commonality and provide opportunities to develop competence and self-esteem.

Contextual Errors and Safety Issues

Inappropriate sexual behavior on the part of individuals with special needs can stem from lack of opportunity for appropriate sexual expression, ignorance of what is considered appropriate behavior, and poor social education.

Behavior that leads teens with disabilities into trouble as "perpetrators" is not necessarily atypical for hormone-driven adolescents, but it often also involves either bad judgment on the part of the individual with a disability and/or a hasty and ill-considered reaction on the part of parents or school personnel. Because opportunities for privacy are less frequent for people with special needs and comprehensive sexuality education is often withheld from this population, it is not surprising that teens with special needs commonly display sexuality inappropriately.

NICHCY identifies two kinds of common social mistakes on the part of people with disabilities. These are public-private errors and stranger-friend errors. Public-private errors include behaviors such as sexual self-stimulation or saying something inappropriate in public. Stranger-friend errors include hugging or kissing a stranger, for example, or being overly familiar with an acquaintance. Both kinds of mistakes can put individuals with disabilities in situations of risk (i.e. sexual exploitation or breaking the law).

Of course, sexual exploitation or abuse is of concern for all people, but for youngsters with disabilities, there are a number of additional factors. Children with physical disabilities are less able to defend themselves; those with cognitive limitations are often not alert to potentially dangerous situations - a problem that may be heightened by a lack of knowledge about sex and sexuality. Many people with disabilities do not know to report abuse, how to report abuse, or are afraid to (the abuse is likely from someone they know). Some youngsters have low self-esteem and others are lonely or seeking approval and affection. Children and teens with disabilities are often dependent on others for intimate care and are sometimes exposed to a large number of caregivers. They are also typically taught to be compliant to authority.

The American Academy of Pediatrics (AAP) reports that the likelihood of abuse may be reduced or eliminated when "sexual questions and behaviors of individuals are freely discussed within a family [and] sexual development is promoted."

How can parents and educators plan and deliver human sexuality education that meets the specific needs of children with disabilities?

Differentiating for Special Needs

According to the Sexuality Information and Education Council of the United States (SIECUS) parents are (and should be) the primary sexuality educators for their children, but in the case of educating children with disabilities, parents may need additional professional help and support.

The AAP recommends that an appropriate program for children with disabilities cover the following material: body parts, pubertal changes, personal care and hygiene, medical examinations, social skills, sexual expression, contraception strategies, and the rights and responsibilities of sexual behavior.

Because sexuality education for children with disabilities requires a certain degree of individualization, the student's IEP (Individual Education Program) can be used as an instrument for adapting the sexuality curriculum for the child. If human sexuality education is written into the IEP, it is more likely to be designed and delivered around the unique needs of the student.

Knowledge of how a particular disability affects development, learning, and sexual expression is important in adapting human sexuality education. For children with learning disabilities, small changes to existing materials may be necessary, along with planning about the pacing of lessons and special focus on social skills. Reading level may be an important consideration when choosing resources. For youngsters with mental retardation, information should be presented in small blocks, using simple and concrete terms. Concepts of public and private places and behavior as well as personal safety considerations should also be emphasized and reinforced. For children with multiple disabilities, there may be a number of modifications required, including providing material in other formats (such as Braille for the visually impaired) and additional information on how a physical disability, for example, might affect expression of sexuality or a sexual relationship.

Other possible educational strategies include the use of multisensory activities by way of illustrations, anatomical models, slides, photos, audio-visual materials, interactive games, or adaptive technologies, breaking down learning new tasks into several small steps, repetition, practice and frequent review over time, coupled with feedback and praise. Parents and educators may also find specific tips, resources, and support by networking with others. The Council for Exceptional Children recommends learning strategies that closely approximate real life, such as role-play as well as opportunities for interaction with non-disabled peers.

Like all children, students with developmental disabilities grow into adolescence with physically maturing bodies and a host of emerging social and sexual feelings and needs. Before these changes begin and throughout adolescence, it is vital that educators and parents provide information in a constructive way that is both clear and developmentally appropriate. For a list of additional resources, please visit the Education Channel at www.eparent.com.

Liz Sweeney is employed by MarshMedia, an educational publishing company with a long history of providing health education materials to schools and other institutions. In conjunction with school nurses and special education professionals, Liz wrote and produced the educational series, Puberty Education for Students with Special Needs, to address the dearth of material expressly designed for this student population. As an outgrowth of her production, writing, and editorial experience, Ms. Sweeney wrote the MarshMedia White Paper on which this article is based. For this she was recognized as a noted expert by Advocates for Youth. More information about MarshMedia can be found at their website: www.marshmedia.com or by calling 800-821-3303.