Sexuality Among Adolescents With Intellectual Disability: Balancing Autonomy and Protection

L is an 18-year-old female with repaired tetralogy of Fallot, chronic lung disease, epilepsy, and moderate ID. She lives with her parents and can perform daily self-care with routine reminders, walk to the bus stop, and safely cross the street. She is currently in the tenth grade and is taking special education classes. She communicates and reads at an elementary school level and works bagging groceries at a local supermarket. L’s parents have never applied for legal guardianship.

During her annual well visit, L shares with her pediatrician that she met a young man at her job and is now in a relationship. Her boyfriend is 17 and they have had sexual intercourse (most recently, one month ago). Their only contraceptive method is occasional condom use. L is adamant that sex is consensual but has not told her family about her boyfriend. L’s pediatrician is concerned that L is hiding her relationship from her family. Because of these concerns, the pediatrician carefully screens for possible coercion by asking multiple questions about L’s relationship and is satisfied that L is freely choosing to engage in the relationship. The pediatrician is also worried about L’s lack of contraceptive use and the pregnancy risks associated with her multiple diagnoses. Her pediatrician wonders, given L’s ID, if she should disclose L’s relationship to her parents.

This case raises several concerns. The patient, although legally an adult, has ID and might not be capable of making informed decisions. The pediatrician is appropriately concerned about whether her relationship is coercive, her risk for sexually transmitted infections (STIs) and pregnancy (given inconsistent condom use), and her safety during a potential pregnancy.

In the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, (DSM-V) the term “mental retardation” is reclassified as “intellectual disability.”⁵  Functional capacity, rather than IQ, is used to classify mild, moderate, severe, and profound disability.⁶  The DSM-V describes the wide spectrum of ID as “impairments of general mental ability that impact adaptive function in 3 domains”: (1) conceptual skills, such as language, reading, writing, math, reasoning, knowledge, and memory; (2) social-cultural skills, such as making and retaining friendships and social judgement; and (3) the ability to manage self-care, money, work, and health.⁷  Most pediatricians do not have up-to-date documentation of a patient’s level of ID and often rely on parental reporting or school testing. A patient with mild ID can shower, walk to school, and have friends but may struggle with academic skills, money management, and interpreting social cues. A patient with moderate ID can have successful relationships, maintain employment in a career that demands minimal social or conceptual skills, and slowly attain reading and writing skills. Academic skills might remain at an elementary level, and extensive coaching may be needed to acquire independence in activities of daily living. A patient with severe ID can understand simple receptive gestures and speech but has limited expressive language and requires support for all activities of daily living. A patient with profound ID has limited capacity to understand symbolic communication and requires around-the-clock support with all activities. Although experts believe that most individuals with mild to moderate ID are, with education and support, capable of consenting to sex, they express less confidence in the capacity of those with severe or profound ID to do the same.^8,9 

Because L is 18 and her parents have not obtained guardianship, she is legally considered an adult, with the right to make her own health care decisions. However, many pediatricians continue to defer to parents about health care decisions even after adolescents reach the age of majority; this occurrence is particularly prevalent for patients with ID. Sometimes, family members petition for guardianship when a minor with ID reaches their eighteenth birthday. If the court determines that the individual lacks competence, it can appoint the family member as the individual’s legal guardian.

Guardianship laws vary by state, but some concepts are consistent throughout the nation. Guardianship orders can be limited, granting guardians the power to make decisions only in areas where the protected person lacks competence, such as financial or medical decision-making. Alternatively, a court may grant plenary guardianships, which provide the guardian with authority to make all decisions for the protected person. Guardians are tasked with pursuing the best interests of the protected person and using substituted judgement when making decisions on their behalf.¹⁰  Although guardians have the final authority to make decisions, AYA with ID should be involved in the decision-making process and empowered to voice their preferences.³ 

Medical providers too often pay little attention to sexual satisfaction, consent, and intimacy for those with ID.¹¹  Sexual rights, as defined by the World Health Organization, include access to sexual and reproductive health care services, sexual education, freedom to choose a partner, the decision on whether to become sexually active or not, freedom from coercion, and pursuit of a satisfying, safe, and pleasurable sexual life.¹² 

While honoring L’s desire to express her sexuality, there is reason for caution. One-third of adults with ID have been victims of sexual abuse.¹³  Individuals with ID who are most at risk for sexual abuse include those who are institutionalized, those who are female, younger individuals, and those with greater levels of disability.¹⁴  When those with ID who have been sexually abused report it, they often face stigma and other barriers that make them less likely to report in the future.¹⁴  There are screening tools for providers to assess the risk of sexual abuse for those with ID as well as training programs to help those with ID understand healthy sexual relationships. Pediatricians can also involve social workers and school psychologists to help properly assess sexual abuse.^15,16  As with reporting suspected abuse of minors, pediatricians are mandated to report sexual abuse in those with ID.¹⁷ 

Before discussing contraception, L’s desire for pregnancy should be explored. Women with ID have a higher rate of unintended pregnancy compared with that of their peers. This is thought to be due to poor reproductive knowledge and decreased access to contraception.¹⁸  If L does not desire pregnancy, a conversation regarding contraceptive options is appropriate. If L discloses a desire to be pregnant, a conversation regarding L’s health risks in the event of a pregnancy should be communicated.

Women with ID often have minimal knowledge about contraception, and, because pediatricians lack training in addressing the sexual health needs of those with ID, critical opportunities to discuss contraception are often ignored or avoided altogether.^19,20  This case study illustrates a prime opportunity to assess L’s understanding and sentiments about the various methods of contraception and if a long-acting reversible contraceptive might be appropriate for her.

L and her partner’s occasional condom use increases her risk for STIs. Low sexual knowledge increases the likelihood of engaging in unsafe sex, leading to STIs.²¹  The pediatrician should evaluate L’s knowledge of STI prevention, educate her about consistent condom use, and facilitate access to condoms. L should have STI testing and treatment per Centers for Disease Control and Prevention guidelines.²² 

Tetralogy of Fallot (TOF), the most common cyanotic congenital heart defect, has an excellent prognosis after repair, with a majority of patients living into adulthood, but includes an increased risk for clotting and changes in cardiac function during pregnancy.^23,24  Certain antiepileptic drugs are teratogenic, requiring that patients desiring pregnancy be transitioned to alternative medications.²⁵  These factors make any such pregnancy high risk, and, for L, pregnancy should be a planned event. The pediatrician should assess L’s understanding of her medical conditions and determine if she is aware of the risks associated with pregnancy and childbirth.

Medicine has a lengthy history of ineptitude and cruelty in treating patients with disabilities. Those patients whose disabilities are chronic, including ID, were susceptible to unwanted medical interventions, particularly with respect to sexual and reproductive health. Consider, for example, Buck v Bell, the US Supreme Court case establishing the right of states to involuntarily sterilize disabled women.^26,27 

Because most physicians act within a generally recognized standard of care and the bounds of legal precedent, the law has a vital role in dictating the fate of people with disabilities and the medical treatment that they receive. As domestic and international law increasingly recognize the civil rights of people with disabilities, including those with ID, it is recognized that people with ID can lead fulfilling and productive lives in their local communities.

Rights to sexual and reproductive health are critical to individuals with ID. The right to sexual health includes an individual’s rights to pleasurable sexual experiences.²⁸  Sex is also inherently linked to the rights to marry and parent, the creation of the family unit, and even the continued existence of our species.

Court dockets in jurisdictions throughout the United States are scattered with petitions from individuals with ID and their family members respectively seeking protection of their sexual rights and the curtailment of those rights. Although some states explicitly bar guardians from independently pursuing the sterilization of their wards, other states permit a guardian to deny consent for a ward to marry.²⁹ 

At 18 years of age, L is an adult and should be treated as such. Unless and until a court determines that L lacks the competency to make decisions, including health care decisions, L can make her own choices. Although she has moderate ID, nothing suggests that L is incapable of making her own decisions after she has been educated about potential risks and benefits in a developmentally appropriate manner. Like similarly-aged peers, L is in school, has a part-time job, and is sexually active with her boyfriend. Similarly, L should be afforded the same age-appropriate opportunities to make health care and lifestyle decisions.

Here, L's pediatrician should share concerns about potential pregnancy with L, in a manner that L can understand. Unless this information is shared with L, she may not know that pregnancy poses particularly adverse health risks to both herself and her infant. L's pediatrician should also provide L with information about contraception and, if requested, help L obtain it. Through the provision of education and support, the pediatrician is empowering L to take responsibility for her reproductive health.

If L's pediatrician still has concerns regarding L’s ability to make an informed decision or if L wants additional support, L's pediatrician could suggest including L's family or another trusted adult in the decision-making process. This involvement could be a simple conversation, with verbal consent from L, or a more formal arrangement, such as a supported decision-making (SDM) agreement (discussed in detail in the fourth commentary) for health care decisions. Regardless of the means of familial involvement, L should be encouraged to lead the process.

Katerina, who is 23, and Sofia, who is 21, are sisters with moderate and mild intellectual disabilities, respectively. Their parents have plenary guardianship of Katerina and limited guardianship of Sofia’s finances. Both sisters graduated high school and they, respectively, work in retail and at a grocery store. Dr Ott was their physician when they were teenagers and spoke with them about their perspectives on this case. They requested that Dr Ott write their comments as a conversation. They discussed the case in detail and Dr Ott explained medical terminology using lay language. The sisters then reviewed Dr Ott’s notes and agreed their perspectives were represented accurately. Katerina and Sofia understood that L’s heart is weak, that L’s epilepsy medications might harm a fetus, that L could use certain forms of birth control, and that a pregnancy might be dangerous both to L and her fetus.

Katerina and Sofia both stated that it was important for the doctor to ask L about her relationship, whether she really wanted to have sex, and whether L’s boyfriend was using protection (condoms) or had the human papillomavirus vaccine. They said that some young people are really interested and curious about sex while others are not, so the doctor should understand L’s feelings.

Both agree that L most likely did not want to tell her mom because her mom would disapprove, and L would be scared and embarrassed. They were able to put themselves in the family’s position, saying that L’s mom would definitely be worried about pregnancy. With her medical conditions, the infant could die “inside her tummy” or L might get sicker from the pregnancy.

Katerina and Sofia differed in whether they thought the doctor should tell L’s parents. Katerina was in favor of telling the mom because L might become pregnant. She felt that it would be okay for the doctor to tell her mom “if she [the young woman] is not being responsible… If she won’t listen to the doctor, maybe she will listen to the mom.” She felt that many parents are coming from a “helping place,” and that it is generally not good to keep secrets from your mother.

In contrast, Sofia felt that the pediatrician should not tell L’s mother she needed birth control, asking “Don’t people have their own rights after 18?” She felt it is L’s prerogative whether to tell her mom and that, if the doctor tells the mother, then the mom will know she had sex. She felt that the doctor telling the mother without L’s permission was an invasion of privacy and that the doctor should ask her permission to involve her mother and, if she says no, to honor confidentiality. Sofia worried that L would not tell the doctor anything private in the future if the mother was informed against L’s wishes.

Both strongly felt L should not be forced to use birth control. Sofia said that the doctor cannot make L do anything but instead should advise and make suggestions. Both felt that if the doctor pressures L, it might make her upset and less likely to use any birth control.

Provider truthfulness was important. Both said that a doctor should not lie to a parent. For example, if L had a positive pregnancy test and her mother asked about it, the doctor should give the diagnosis and results. Doctors should also be truthful to the patient. If the doctor felt that they needed to tell L’s parents, then the doctor should let L know that.

Both Katerina and Sofia liked the idea of a support person and the use of SDM approaches.³⁰  Although they said that a mother might be a support person, L could also ask a partner, close friend, or sibling.

A key ethical concern is whether L has the capacity to make medical decisions. Medical decision-making capacity is separate from the determination of legal competence and is based on L’s cognitive abilities and the complexity of the medical decision. Research suggests that by 12 to 14 years of age, most adolescents have the ability to process health care decisions.³¹  Decisional capacity has been defined as the ability to understand the health information provided, appreciate the effects of choices, weigh the risks and benefits and use reason to come to a decision, make a voluntary choice, and communicate the decision.³²  An individual with ID who can understand the medical information, appreciate how it will affect them, reason, and make a voluntary choice can make a medical decision. The principle of autonomy requires that, if an individual has decisional capacity, their right to make health care decisions must be respected. Importantly, this includes honoring a poor or ill-advised decision.

Humans are social beings and generally do not make health care decisions in a vacuum. Adults, as well as adolescents, rely on family, partners, and friends for help and support with the decision-making process. Key to respecting L’s autonomy, however, is to let her decide who will support her and define their role in the process.

Shared decision-making and SDM are two approaches that pediatricians can use to support AYAs with ID in medical decision-making. Shared decision-making is an interactive process in which the patient and provider exchange information collaboratively and collectively arrive at a decision that is consistent with the patient’s preferences and values.³³  The pediatrician would discuss concerns regarding L’s medical care with her in a developmentally appropriate language and discuss together the available care plan approaches, and L would ultimately make health decisions facilitated by her pediatrician. Studies show that AYAs with mild to moderate ID can voice preferences that inform health care decisions.³⁴ 

AYAs with ID may also opt for supported decision-making (SDM), a method endorsed by the United Nations Convention on the Rights of Person with Disabilities.³⁵  Eighteen states and the District of Columbia have laws recognizing SDM. SDM differs from shared decision-making in that the person with ID designates one or more trusted individuals (eg, a family member, friend, teacher, or caregiver) familiar with their values and preferences to help discuss and consider options before a final decision is made by the intellectually disabled person. Notably, not every decision needs to be discussed with every supporter; the supported individual may designate the type of support or circumstance(s) in which a respective participant engages in their SDM agreement.^36,37 

SDM is less restrictive than guardianship and the power of attorney framework because the disabled individual retains their right to make final decisions. At the same time, SDM acknowledges that the supported individual wants decision-making assistance. SDM agreements also aid health care practitioners insofar as they explicitly state the patient’s values and preferences and trusted health care supporters that should be engaged in certain decisions.

Although SDM is often a viable substitute for guardianship, guardians can still employ SDM principles.³⁸  The National Guardianship Association’s practice standards emphasize the importance of informed consent and self-determination. For example, guardians “shall provide the person under guardianship with every opportunity to exercise those individual rights that the person might be capable of exercising” and “shall attempt to maximize the self-reliance and independence of the person under guardianship.” Guardians may also use SDM as a tool to determine if protected persons can effectively make decisions before petitioning for the dissolution of an existing guardianship.³⁹ 

L’s case reflects the challenges that arise when a pediatrician’s duty to protect vulnerable AYAs with ID from harm conflicts with the need to support emerging autonomy. Although US law no longer automatically denies individuals with ID basic rights to sexual and reproductive health, the pediatric medical community continues to search for the appropriate balance between restrictive measures that promote safety and empowering AYAs with ID to exercise their rights to be sexual and make reproductive health decisions.⁴⁰ 

Autonomy honors the concept of respect for persons and acknowledges the right of those with decisional capacity to make their own choices, even if pediatricians and families disagree. Making decisions and experiencing consequences (both positive and negative) empowers AYA to learn from their choices and grow. It is important to note that although autonomy is based on a person’s capacity to understand and make an informed decision, capacity exists on a continuum. It is possible that an individual may have capacity to make decisions involving a certain level of complexity or within certain domains, even if they lack capacity for highly complex issues. Additionally, a patient’s capacity is fluid and may change over time as they become more educated and share in additional life experiences.

There is often conflict between AYAs with ID and their families during the transition to adulthood. Families, believing their loved ones are vulnerable, may attempt to limit their ability to engage in and make health decisions. AYAs with ID generally find these measures overprotective and restrictive.⁴¹  They frequently experience “protection” and suffer penalties for making “bad” decisions, including being subjected to guardianship. Justification for these occurrences are often (incorrectly) framed by the ethical principle of the patient’s best interest.⁴²  This approach fails to honor an AYA with ID’s right to participate in decision-making, perpetuating the view that those with ID are helpless and need to be universally discouraged from risk. Allowing AYAs with ID to live their lives to the fullest, a basic human right, requires families and pediatricians to allow these young people to take risks and experience consequences. To deny someone the opportunity to make decisions withholds a critical opportunity for maturation and places them in what Azzopardi-Lane and Callus⁴³  call a suspended state of adolescence.

After spending time with L, her pediatrician was convinced that she was entering into her relationship willingly and without coercion. L did not desire pregnancy, and contraceptive methods were discussed. L consented for her mother to be part of the discussion regarding contraceptive options, and they agreed to have an intrauterine device placed to help L with her menses as well as prevent unintended pregnancy. The pediatrician did not disclose L’s sexual relationship to her parents, respecting L’s choice. L was also tested for pregnancy and STIs. A few months later, L’s mom returned with L requesting an examination. L’s mom had obtained plenary guardianship of L and recently found out that she was sexually active. She did not feel that L had willingly engaged in sex. L’s pediatrician met with both L and her mother, discussing the importance of respecting L’s right to sexual and reproductive health. The pediatrician encouraged L to discuss her thoughts and preferences with her mother.

L’s pediatrician has similar duties to L as to her patients who do not have intellectual disabilities. She should provide L with anticipatory guidance regarding puberty, adolescence, and sexuality, including information about consent, contraception, and STIs. L’s pediatrician should modify the manner in which she conveys this information to L, as she should with all patients, on the basis of factors such as their sexual orientation, health conditions, and development.²  L’s pediatrician should also transition L to an adult approach to care. If the pediatrician was concerned that L lacks medical decision-making capacity, she should have addressed this well before L turned 18 years old.⁴⁴  If guardianship were justified, it should be as narrow as possible. Although the pediatrician may have a legal obligation to report suspected abuse to the state, the information provided does not provide other grounds for violating L’s confidentiality. Although some young adults may desire their parents or guardian’s support in medical decision-making, L’s desire for privacy should be respected, even if her pediatrician believes she is making an imprudent decision.

We thank Katerina Austrom and Sofia Austrom, who provided perspective of young adults living with ID for this article.

AYA

adolescent and young adult

ID

intellectual disability

SDM

supported decision-making

TOF

tetralogy of Fallot