According to the World Health Organization, “Sexuality is an integral part of the personality of everyone: man, woman and child; it is a basic need and aspect of being human that cannot be separated from other aspects life. “ (World Health Organization, 1975)
Sexuality is the lens of being a male or female through which a person views and responds to the world. There are biological, genetic, medical, social, educational, psychological, spiritual, cultural and legal aspects to sexuality and these differ depending upon where, when and how you live, who is raising you and what is personally important to each individual.
While not all individuals choose to be sexually active, all individuals are sexual beings. Expressions of sexuality include, but are not limited to, socialization, activities of friendship, boundaries in relationships, body awareness, human connectedness, genital interactions, assertiveness, self image, self-care, decision making, and personal code of ethics.
SIECUS (Sexuality Information and Education Council of the United States) joins in affirming, “that sexuality is a fundamental part of being human, one that is worthy of dignity and respect” and supports the rights of all people to have “accurate information, comprehensive education about sexuality and sexual health services”.
YES! People with intellectual disabilities have sexuality, regardless of their degree of disability. However, when sexual expression includes others, social awareness becomes relevant. A person’s ability to participate depends upon his or her functional social understanding.
While people with intellectual disabilities are usually biologically able to have sex, our culture and judicial system impose restrictions upon many sexual activities of people with this disability. Especially restricted are those activities where the risk of irreversible harm to self or others is high.
State governments differ in the legal restrictions they impose upon individuals with intellectual disabilities based upon their knowledge and understanding of sexual limits and of the consequences of crossing or violating those limits. (For discussion in greater depth about the law, see FAQ #6, below.)
With increased social awareness and empathy, accomplished through education, guidance, opportunity and ongoing support, many adults with intellectual disability can develop meaningful, mutual relationships that may include a range of sexual activity and/or marriage.
People with intellectual disabilities can have and want to have relationships that include sexual expression.
Therefore it is important for people with this disability to have age appropriate, comprehensive sexuality education. That is to say, as in FAQ #1, sexuality education should include not only facts about sex and biology, but must also teach people to manage and enjoy relationships, make responsible choices and distinguish right from wrong.
Sexuality education helps people with an intellectual disability recognize if someone is trying to take advantage of them so they can recognize inappropriate sexual advances early on, better protect themselves from exploitation and/or be able to report incidents of suspected sexual abuse.
Education also helps people with disabilities avoid making social mistakes that might make them look foolish or might be mistaken for criminal activity.
Information about sexuality also increases a person’s awareness of the possible consequences of sexual activity, such as the risk of pregnancy or of acquiring a sexually transmitted disease. Sexuality education also teaches people how to protect themselves from some of the unintended outcomes of sexual activity.
People with intellectual disabilities have the right to be sexually active and the right and responsibility to be educated about sex, just like everyone else.
Most adults with intellectual disabilities have the biological ability to reproduce, that is, to conceive and bear offspring.
Each state has established laws governing a person’s capacity to consent that may prevent an individual from engaging in sexual activity with another person, including sexual intercourse.
Reproduction is only one of very many aspects of sexual expression. Sometimes a disproportionate amount of attention is given to this aspect of sexuality to the neglect of other more pressing and frequently occurring aspects of sexuality, responsibility, safety, enjoyment and personal choices.
Adults with intellectual disabilities also have the legal right to have and raise the child. A state, however, may step in under its “parens patriae” power, to remove the child from parental care if abuse or neglect occurs. (State child protective agencies are authorized to assure that children are safe from endangering actions of their parents or caregivers.)
Often parents with intellectual disabilities demonstrate the need for special supports to ensure their child’s wellbeing, such as training in child care, housing, financial support, access to pediatric health care and child care services. If those supports are not provided, or are insufficient for a particular situation, the child’s wellbeing might be compromised.
Each individual with intellectual disabilities and his or her sexual partner with assistance from caring family members and a knowledgeable support team must make this important choice based upon realistic expectations, education, law, personal values and future goals.
This aspect of life should be more fully discussed in an FAQ related specifically to parenthood and child rearing by individuals who have intellectual disabilities.
Sexual abuse can be defined as forcing, threatening, coercing, tricking or manipulating another person into unwanted sexual contact or into sexual contact to which the other person does not have the capacity to give consent.
Sexual abuse involves power and control over another individual without his or her consent. It can involve a range of unwelcome sexual actions by others from harassing language to violent rape or sodomy, and other acts. Sexual abuse is a crime of power that uses sex and secrecy as weapons.
While statistics vary somewhat, all reports indicate that people with an intellectual disability are significantly more likely to be sexually abused than their same age peers. They are often targeted as victims because of they are perceived as easier marks who will have difficulty recognizing the abuse. They are likely to have more difficulty reporting what has happened to them and are less likely to be believed or may not qualify to testify in court.
Most reports of sexual abuse are from women, but men are also abused. An overwhelming majority of sexual abuse is from a person who is known to the victim and often the abuse occurs in the victim’s own home.
Often people with intellectual disabilities are more vulnerable to sexual abuse when they are denied the friendships, family relationships and contacts with work colleagues that help protect from secret abuse. Instead, they may be exposed to caregivers or other relationships that foster dependency or create isolation while appearing outwardly to be caring and trustworthy.
The difference between inappropriate sexual behaviors and sex offending behaviors can usually be discerned through observation and assessment* of the individual.
Some individuals who exhibit inappropriate sexual behaviors do so as the result of limited communication and social skills, a need for affection and love, and/or a need for attention. These behaviors can be offensive, can result in unintended victimization of others and/or in violation of rules or laws. Intervention, however, is geared more toward education and mastery of social skills, rather than punitive measures.
Sex offending behavior involves the victimization of another and/or violates rules or laws. It includes: nonconsensual contact (e.g., rape, sexual assault, pedophilia, etc); nonconsensual non-contact (e.g., exhibitionism, voyeurism, production or possession of child pornography, etc) and consensual contact that occurs in public places.
In cases of inappropriate sexual behavior or sex offending behavior, it is critical to address the behavior in a timely manner and to provide professional, clinical assessment and intervention to ensure the safety of the individual and of the community.
*Ideally, when possible, assessment tools should be adapted specifically for use with people with intellectual disability. Tools that have been standardized on a sample of individuals with cognitive disabilities should be used in conjunction with life history, appropriate psychological and psychiatric measures, and cognitive and functional assessments.
Generally, the law attempts to balance the rights of individuals with the rights of society.
Individuals have the right to privacy and to the right to have consensual sexual relations. These rights are restricted for children, and for a small number of adults with disabilities who are deterrmined to be currently unable to consent to sexual activities. As the level of risk, intrusiveness, and irreversible negative consequences of the sexual activity increases, the scrutiny of the law also increases. AAIDD’s A Guide to Consent contains an excellent discussion of legal consent and sexual activity.
On the other side of the balance, society needs order and attempts to protect its citizens from harm such as sexual aggression and exploitation. Each state may have different general civil and criminal laws that protect people with intellectual disabilities. In addition, a state may have some special laws or sections of laws that focus specifically on sexual activities and people with disabilities such as: abuse of resident or “special populations” laws, prohibition of sexual activity by a therapist with a patient, sexual sterilization laws, and enhancement of sentence laws when the victim of a crime has a disability.
The key to fair implementation of the law is education. Lawyers, judges, prosecutors, and victim assistance personnel must be educated about disability so they can help assure justice for defendants and victims with intellectual disabilities. Individuals with intellectual disabilities must receive education about their own sexuality and how to appropriately and safely live the sexual aspects of their lives. Support personnel must receive education so they can assist individuals consistent with the desires of individuals, relevant agency policies, and the law.
It is important to recognize that educational and psychological research shows that culturally acceptable, personally enjoyable social behaviors are the best safeguards from sexual advantage taking for people with intellectual disabilities. Knowing what sexual expressions are acceptable and safe is vital to being able to distinguish them from unacceptable and unsafe sexual expression. Sex education is the linchpin of preparation of persons with intellectual disabilities to partner with caring others in promoting their own safety.
Functional assessment is an important tool that can be used effectively to explain what is generating sexual behavior or its source. The information gathered from a functional assessment can guide the development of a broad plan of social development and sexuality education and training for a student. Educational plans developed from these evaluations can help to prepare people with intellectual disabilities to partner meaningfully. Education aids in protection from sexual exploitation or abuse.
It makes sense for parents and professionals to remain aware of the social development of persons with intellectual disabilities beyond their childhood and adolescent years. Some families have been taken by surprise when sexual "urges" and interests became evident as late as the person’s 20s or even 30s.
The appearance of sexual urges and interests should be celebrated as an aspect of persons with intellectual disabilities that is within normal limits. It need not be feared as yet another obstacle to success and independence. Non-experts can be tempted to treat sexual expression as simply a behavior to be suppressed. This is not a wise approach to managing this important aspect of life.
Parents and other concerned parties can consult professionals to assist in advocating with school districts or adult support providers to incorporate sexuality education into their family member’s annual goals at a developmentally appropriate time.
Parents and professionals can consult with reliable national, regional or community branches of organizations that provide credible research, services, programs and supports to individuals with intellectual disabilities, their families and friends, such as American Association on Intellectual and Developmental Disabilities (AAIDD), the ARC, National Down Syndrome Society (NDSS), United Cerebral Palsy (UCP), National Association on Dual Diagnosis (NADD), TASH, Association of University Centers on Disability (AUCD), Self Advocates Becoming Empowered (SABE).
Parents and professionals can review the many high quality resource materials and curricula that have been created specifically to address the social development and sexuality education needs of individuals with intellectual disabilities across their lifespan and across a broad range of abilities.
Parents and professionals can consult with reliable local and national organizations that can be depended upon for accurate and current information about sexuality.