Preventing Sexual Assault in Intellectual Disability

December 1, 2024

Current Issue, Medical Issues, Psychotherapy Rounds

by Julie P. Gentile, MD, MBA, and Larrilyn Grant, MD, MS

Drs. Gentile and Grant are with the Department of Psychiatry at Wright State University in Dayton, Ohio.

Funding: No funding was provided for this study.

Disclosures: The authors have no conflicts of interest relevant to the content of this article.

Innov Clin Neurosci. 2024;21(10–12):15–21.

Department Editor

Julie P. Gentile, MD, is Professor and Chair of the Department of Psychiatry at Wright State University in Dayton, Ohio.

Editor’s Note

The patient scenarios presented in this article are composite cases written to illustrate certain diagnostic characteristics and to instruct on treatment techniques. The composite cases are not real patients in treatment. Any resemblance to real patients is purely coincidental.

Abstract

Prevention of sexual assault in intellectual disability (ID) begins with defining the problem. There are identified risk factors and barriers faced by adults with ID who experience sexual assault. Research shows that individuals with ID are victimized by sexual assault at rates substantially higher than the general population. The perpetrators are usually trusted individuals in their environment, such as peers, caregivers, or family members. Effective prevention efforts require identifying risk factors and employing public health strategies. Finally, widespread adoption of evidence-based educational programs and proven strategies are necessities.

Keywords: Intellectual disability, developmental disability, sexual abuse, prevention, sexual assault, public health

Sexual abuse is a global concern among persons with intellectual disabilities (IDs).¹ All forms of sexual violence are associated with significant morbidity and mortality, including psychiatric disorders. Research shows that persons with ID are victimized by sexual assault at rates substantially higher than the general population.² The perpetrators are usually trusted individuals in their environment, such as peers, caregivers, or family members. Effective prevention efforts require identifying risk factors and formulating public health approaches and strategies. Universal adoption of proven strategies and evidence-based educational programs are necessities. Abuse can be defined as “any behavior that is unwanted, intentionally harmful, demeaning or insulting,” or causes fear or anxiety in the victim, including “physical violence, sexual assault, bullying, emotional maltreatment, or neglect.”² The likelihood of abuse is 2.5 to 10 times higher in individuals with ID compared to the general population; abuse is more likely to occur repeatedly, over longer periods of time, and is presumed to be underrecognized and underreported.³

There are identified risk factors and barriers faced by adults with ID who experience sexual assault.⁴ Fear is one such barrier; individuals with ID might be too scared and intimidated to ask for help. Alternatively, they might be afraid of being attacked again, not believed, or blamed for the assault. If the perpetrator is a staff member, they might fear being denied basic needs, financial support, or essential care. There might also be afraid of how disclosure would affect their personal freedom or lead to restrictions on independent living.

Disparities and Social Determinants Related to ID

McGilloway et al⁴ also identified communication difficulties as a barrier. Law enforcement interviewers might use verbiage not understood by the person with ID. Poor recall of the person with ID can lead to greater vulnerability in responding to leading questions and can increase acquiescence. Law enforcement will sometimes fail to report crimes if both the victim and perpetrator have ID, believing incidents should be managed in the ID system. Belief that the court process is too traumatic for the already traumatized person is an issue as well, as is the belief that ensuring the victim’s safety is a greater priority than prosecuting suspects. Persons with ID often have their cognition and credibility brought into question. Deficiencies in agency collaboration and a lack of appropriate legislation are also significant barriers in the reporting of sexual assault by people with ID.⁴

The impact of sexual violence is distressing for anyone. However, because people with ID experience a wide range of additional disparities (e.g., health, economic, educational, social) and face barriers in accessing services and supports, including those for survivors of sexual violence, the experience might be even more traumatic and more complex.⁵

People with ID might be scared to come forward about sexual violence, especially if perpetrated by a caretaker or authority figure, because it could lead to negative consequences related to accessing the care that supports their independent living. Individuals with ID might not be believed when they make a report or disclose sexual assault because of incorrect assumptions others made about their capabilities. Individuals with ID often have communication challenges and might have trouble understanding or conveying what is happening to them and might be unable to clearly communicate nonconsent.⁶

People with ID also often do not receive any sex education and, if they do, it can be inadequate. As a result, people with ID might have difficulties recognizing they are being abused and therefore might not report it when it happens.⁶

Survivors with ID might face additional challenges receiving crisis support services because many service providers lack adequate training on supporting victims with ID, including training on survivor-informed care.⁵ As a result, they do not have the information and knowledge needed to plan for serving a diverse population with accessibility needs. For example, rape crisis centers might not have accessible buildings or services, such as having victim advocates who can effectively support people with ID with different communication needs. Without proper planning and protocols in place, they might not know how to support victims with ID reporting abuse.

Clinical Case Vignette 1

J was a 25-year-old female individual with a history of moderate ID. She was brought to the clinic by her caregiver, Ms. E. Ms. E reported concerns about recent changes in J’s behavior, including increased aggression, frequent crying spells, decreased sleep, and avoidance of male staff members. J had also been complaining of lower abdominal pain and had increased agitation during bathing and dressing.

Dialogue 1

Psychiatrist: Hi J, My name is Dr. K. How are you feeling today?

J (looking down): Okay.

Psychiatrist: It sounds like a lot has been going on recently. You are safe here, and I am here to help make you feel better. Is it okay if I ask Ms. E a few questions too?

J: Okay.

Psychiatrist: Ms. E, it sounds like you have concerns about how J has been acting differently lately. Can you talk more about these changes?

Ms. E: Over the past few months, she has been getting aggressive with staff and has been isolating herself in her room. She used to love going to her day program but no longer enjoys this and seems to be especially anxious around male staff members.

Psychiatrist: It sounds like it has been difficult for both of you recently. Have there been any changes in routine or living environment recently?

Ms. E: No, but she has been having trouble sleeping. She often wakes up crying and has been wetting the bed more than usual.

Psychiatrist: Thank you for sharing that. J, do you remember feeling sad or scared recently?

(J nods head yes.)

Psychiatrist: Can you tell me what made you feel this way?

J: My stomach hurts.

Ms. E: She has been complaining of her stomach hurting more recently and has been more reluctant with assistance in bathing and changing clothes.

Psychiatrist: J, does your stomach hurt now?

J: Yes (points to lower abdomen).

Psychiatrist: Thank you for telling me and showing me where it hurts. Did anything happen before your stomach started hurting?

J (anxious): Mr. M [another group home staff member] wanted me to play a game with him. He told me it was a secret game that I couldn’t tell anyone about, or I wouldn’t be allowed to live at the group home anymore, and I really like it there. I didn’t like the game he wanted to play.

Psychiatrist: I really appreciate your bravery in sharing this. Do you want to talk privately without Ms. E, or do you want her to stay with us?

J: It is okay if she stays? Am I going to get kicked out of my group home?

Practice Point 1

Providers should always include abuse on their differential for all patients, especially those with ID. There are screening tools for sexual abuse that can be utilized for individuals with ID.⁷ Warning signs for abuse can be both somatic and behavioral⁸ (Box 1) and should raise clinical suspicion. Questions should be asked at a developmentally appropriate level, and pictures or other communication devices might be needed. Patients should be questioned in a safe, calm environment using trauma-informed care.

There are many barriers to people with ID reporting abuse, including fear of retaliation from the perpetrator. Patients should be reassured of their safety, and providers must advocate for the patient to ensure they are returning to a safe living environment. If the perpetrator is at the environment, emergency intervention and reporting might be needed.

Clinical Pearls

Trauma should always be on the differential.
Common red flag symptoms for sexual abuse can include changes in behavior, bed wetting, pain, increased aggression, difficulty with sleep, changes in mood, or eating habits, among others.
Providers might need to contact authorities to promote patient safety.

Prevention Measures for Stakeholders and Law Enforcement

Steps that can be taken to prevent abuse, exploitation, or neglect include:⁸

Knowing the warning signs (Boxes 1–3)
Asking a lot of questions
Developing and increasing the individual’s circle of support
Referring the individual to community resources, healthcare, and social service professionals for more assistance

If you suspect that a person might be experiencing abuse, exploitation, or neglect:

Listen, affirm, and reassure the person that it is never their fault and that this is nothing to be embarrassed about.
Make a report to the school, social services, and/or healthcare professionals.
Contact the police or an attorney.
Make a report to the state or local child or adult protective services agency, in addition to the developmental disabilities organization. Some states require certain professionals, such as healthcare providers, school workers, public employees, and law enforcement, to make a report to the protective services agency whenever there is a suspicion of abuse, neglect, or exploitation.
Call the local long-term care ombudsman if the person lives in a residential facility, such as a nursing facility.
Refer the person to, or contact, professionals or organizations that have experience in assisting and supporting victims of abuse, neglect or exploitation.

In a study by Svae et al,⁹ focus group interviews were conducted with hospital-based habilitation centers, community residences, schools, and the criminal justice system. The results identified a lack of education and guidelines for stakeholders and law enforcement with regard to oversight of the sexual behavior of people with ID. The criminal justice system faces challenges related to prioritizing, understanding, and communicating with victims. People with ID might lack an understanding of the concepts of sexual consent and acceptable sexual behavior. The authors concluded that there is a need to improve knowledge about ID and how to prevent harmful sexual behavior for professional caregivers in the support sector and the criminal justice system.

Education for Individuals with ID

JoJo et al¹designed a study aimed to investigate the knowledge of sexual abuse and resistance ability among children with mild and moderate ID. The authors measured knowledge and resistance ability in sexual abuse. The Personal Safety Questionnaire and Modified What If Situation Test were administered verbally during individual interviews. The study suggests that children with ID have average knowledge (mean [standard deviation]: 6.6 [1.6]) regarding sexual abuse. More than 90 percent of children demonstrated poor reporting skills, with most children reporting they would not disclose the incident to anyone. This study strongly suggests the need for a structured training program for children with ID to prevent sexual abuse.

Reis et al¹⁰ developed and evaluated a group sexual abuse prevention program. Girls aged 8 to 12 years with mild ID engaged in the prevention program, and individual changes in preventive knowledge (board game, verbal reports) and preventive behavior (roleplay, in situ tests) were measured. Girls from the intervention group showed significant improvements in preventive knowledge, compared to the control group, but showed nonsignificant improvements for preventive behavior. In situ tests with realistic seduction situations revealed no improvement. The intervention proved to be safe, but several risks need to be considered.¹⁰ This is the first study that evaluated a behavioral prevention program on sexual abuse for children with ID with a high-level of evidence. Group interventions empowering girls with ID to recognize abuse situations are suitable to enhance sexual preventive knowledge but are less suitable to enhance preventive behavior. Naturalistic settings are indispensable for provision of evidence for preventive interventions in children with ID.

Estruch-Garcia et al¹¹ designed a study that addressed the sexuality of people with moderate ID, a topic that has been little studied. Understanding romantic and sexual experiences is highly relevant for reducing stigma and prejudice related to their sexuality. Comprehending the level of sexual knowledge of persons with moderate ID contributes to the development of preventive and sexual health education programs tailored for this specific group. The aim of the research was to explore sexual history (relationships, sexual behavior, condom use, and sexual abuse) and sex education received, as well as the level of sexual knowledge. A total of 142 subjects completed questionnaires about sexual knowledge and experiences, and their support staff provided collateral information. Masturbation was the most common sexual behavior (75.7%), especially among men. Sexual intercourse was rare, and only 30.5 percent reported using condoms. Women reported a higher prevalence of self-reported sexual abuse (27.3% vs. 6% in men). The study also highlighted misconceptions about sexual intercourse risks and contraceptive methods. The results suggest that individuals with moderate ID need adequate sexual education to ensure healthy sexual experiences and prevent risky behavior.¹¹

Evidence-supported educational training is critical to prevention efforts. Brkic-Jovanovic et al¹² reported that persons with ID often have incomplete, contradictory, and imprecise knowledge of sexuality. They are often discouraged from expressing their sexuality and might be disciplined or forbidden from doing so. When sex education is provided, it is typically taught reactively in response to problems, rather than as a tool to prevent problems and proactively to support individuals with ID. Brkic-Jovanovic et al¹² studied 100 participants with ID. The majority of participants admitted to having sexual intercourse against their wishes and difficulty asserting themselves. Eighty-two percent of participants were sexually active. Their knowledge of pregnancy, contraception, and sexually transmitted infections was very low. Those that reported having sexual intercourse had more sexual knowledge and were also more sexually assertive.

Dixon et al¹³ conducted a review of studies on teaching safety behaviors to individuals with ID. Self-protection skills were assessed using in situ simulations. The authors concluded that behavioral skills training to teach sexual abuse prevention skills to women with ID results in skill acquisition but poor generalization to other situations.

Clinical Case Vignette 2

A nine-year-old female individual, B, with mild ID and attention deficit hyperactivity disorder (ADHD) presented to the clinic for a follow-up. She excitedly talked to her psychiatrist about her friend at school who had a boyfriend. She said that she thought it was gross that they were always holding hands.

Dialogue 1

Psychiatrist: What about them holding hands do you find gross?

B: They are passing cooties to each other.

Psychiatrist: What are cooties?

B: I don’t know, but it sounds bad.

Psychiatrist: I am glad you brought up your friend and her boyfriend. I wanted to talk to you about something really important—what is okay and what is not okay when it comes to touching or being touched by other people. What do you think about this?

B: I’m not sure. I like hugs.

Psychiatrist: Some types of touches can be okay; some are not okay. Hugs are usually okay if it is from someone you trust, like a family member or close friend, as long as you are okay with them giving you a hug. Some types of touches are not okay. Can you think of any that are not okay?

B: No

Psychiatrist: That’s okay, it is why I wanted to talk to you about it. Any touch that makes you feel uncomfortable, scared, or confused is not okay. If someone tries to give you a touch that is not okay, you should tell them no and tell a trusted adult, like a teacher, parent, or psychiatrist, immediately, especially if it is on an area of your body covered by your underwear or swimsuit.

B: Okay.

Psychiatrist: It is okay for you to say no to any touch that makes you feel uncomfortable, no matter where or who is touching you. It is never your fault if someone touches you in a way that makes you uncomfortable.

Clinical Case Vignette 2, continued

Six years later, B was 15 years of age and continued to be treated for ADHD and ID. They now have a boyfriend.

Dialogue 2

Psychiatrist: How are things going with your boyfriend?

B: Great, we have so much fun.

Psychiatrist: I am glad to hear that. I wanted to talk to you about something we talked about a long time ago—do you remember when we talked about touch?

B: Sort of; telling an adult if I feel scared.

Psychiatrist: Yes, exactly. Now that you are older and are dating, I wanted to talk about touch in your relationship. Is that okay?

B: Okay.

Psychiatrist: Just like before, no one should ever touch you if you don’t want to be touched. It is always okay to say no. Has anyone ever talked to you about sex?

B: Yes, my friend has had sex, and she said it is when your private parts are together. She said you can’t get pregnant the first time you do it.

Psychiatrist: I am glad you bring that up—that is not true. You can get pregnant whenever you have sex.

B: I’m going to have to tell my friend that.

Psychiatrist: Please do. What would you do if your boyfriend wanted to have sex, but you didn’t?

B: My friend said you have to do it because you’re dating.

Psychiatrist: What do you think about that?

B: I’m not sure. I don’t want to have sex.

Psychiatrist: I am glad we are talking about this. Some people date because they have special feelings for each other, and maybe even like or love each other. People can do many things when they are dating, like go out to eat, go to a movie, or go for a walk as long as both people want to and are happy. No one should ever do anything together if both people aren’t okay with it. Does that make sense?

B: So, I shouldn’t have sex if I don’t want to, and I can still date?

Psychiatrist: Yes, you should never do anything with someone that you are not comfortable with, and your boyfriend should never push you to do something you don’t want to do. Who would you talk to if you were feeling uncomfortable about anything with your boyfriend?

B: Maybe you or my mom.

Practice Point 2

Healthcare providers are in a position to provide sexual education to all patients, including those with ID, and this is imperative not only in promoting safe sex, but also preventing sexual abuse.¹⁴ National guidelines exist on providing sexual and reproductive health information; however, many providers spend as little as 36 seconds talking about sexual health with youth patients.^15,16 Many individuals with ID do not receive formal sexual education; thus, they have a heavy reliance on healthcare providers to obtain this important information. A number of toolkits have been created that physicians can utilize and provide to families and caregivers of individuals with ID to start conversations about sexual health.^8,17,18 Physicians can also talk about risks for sexual abuse and review common lures used, such as offering a ride, offering candy, asking questions, and requesting help with a missing animal or object, and practice responses to these situations.¹⁸Physicians can use communication devices, such as pictures, to help individuals identify police officers, cashiers, bus drivers, and other adults who can help the individual in need. Providers can also encourage the use of technology when appropriate to reach a trusted adult or calling 911 if they feel unsafe in any situation.

Clinical Pearls

Physicians should provide education about safe sexual health to individuals with ID.
It is imperative to teach self-advocacy skills, including understanding personal boundaries and the right to say “no” to unwanted physical contact.
Toolkits and resources are available to help start this conversation and provide further education to parents and caregivers.
Roleplaying, identifying trusted adults, and promoting the use of technology can be beneficial in preventing sexual abuse.

Policy and Legislation

Increased awareness challenges public health and human services professionals to reflect on barriers to healthcare and recommits us to our obligation to send a lifeline to all who need it, including people with ID.⁵ The United States Department of Health and Human Services provides funds for programs including rape crisis centers, domestic violence organizations, centers for independent living, protection and advocacy systems, university centers for excellence in intellectual disabilities, state councils on developmental disabilities, and community treatment and service centers, all of which provide critical resources that help victims with ID to lead their healthiest and fullest lives.⁵

Building and maintaining collaborations between the federal government and national and state networks that work on these issues is critical to improving individual and population-level outcomes.⁵ It is recommended that health and human services professionals improve their capacity to serve survivors with ID through the following methods:

Building relationships between domestic violence programs, sexual assault programs, tribes, culturally specific organizations, and disability organizations to facilitate collaboration and training;
Learning what works for prevention of sexual assault and domestic violence;
Providing technical assistance to ensure programs are compliant with relevant disability laws and best practices in sexual violence response services;
Developing advocacy and case management protocols that ensure designated staff are available to assist survivors with ID whenever possible;
Developing trauma-informed facilities and services for persons with disabilities; and
Involving survivors with ID who have lived experience in designing services to meet their needs.⁵

Don’t underestimate the value of public advocacy;² advocacy organizations strive to educate families and the general public about issues important to individuals with ID and are advocates for improved public policy at federal and local levels. The community of parents and medical, legal, and educational professionals that dedicate their efforts to exposing and addressing abuse in this population should continue to receive support.

Ever-increasing opportunities for self-advocacy have also empowered teenagers and young adults with ID to show the world their strengths and tell their stories. These efforts help to diminish the perceived imbalance of power that abusers exploit as they target individuals with ID.²

Clinical Case Vignette 3

A 35-year-old male individual, P, with moderate ID who was nonverbal and communicated through a tablet device presented for a follow-up appointment with his psychiatrist. His day program teacher noticed changes in his behavior, including withdrawal and aggression, but he struggled to communicate what was wrong, and his tablet was not functioning. His caregiver reached out to the clinic due to changes in behavior, and the case manager of the clinic reached out to P’s County Services and Supports Administrator to ensure he had a functioning tablet. He was brought to the appointment by his caregiver, Ms. G.

Psychiatrist: Hello P, how are you feeling today?

P (through tablet): Scared, mad.

Psychiatrist: It sounds like you have had a lot of big feelings lately. Can you help me understand what is making you feel this way?

P (through tablet): Bus.

Psychiatrist: What about the bus has been making you scared and mad?

P (through tablet): Bad.

Psychiatrist: What bad things have happened on the bus?

P (through tablet): Touch. Didn’t like.

Psychiatrist: That sounds like it must have been very scary. Thank you for telling us. You should not have been touched in a way you didn’t like. We want to make sure you feel safe and that this doesn’t happen again. We would like to talk to some people who can help; is it okay if we talk to them?

P (through tablet): Okay.

The psychiatrist reached out the local domestic violence center that specializes in ID. They interviewed P and learned a peer was inappropriately touching P on their bus transport to the day program. They worked with P’s care team to find alternative transportation to his day program and worked with the perpetrator on appropriate behaviors. P’s behaviors then improved.

Practice Point 3

Physicians can prevent sexual abuse through many forms of advocacy. They can advocate to make sure patients have appropriate communication tools and a safe space for concerns to be addressed; they can also promote education and self-advocacy. They can work to educate caregivers on personal safety, recognizing signs of abuse, and promoting open communication. They can work with the community to promote training on healthy relationships and reporting concerns and ensure there are agencies able to provide appropriate trauma-informed care to individuals with ID. Physicians can contribute to public policy by lobbying and supporting legislation that supports stricter caregiver screening, mandated reporting of suspected abuse, and funding for educational programs in this area. Finally, physicians can further research these topics to increase understanding of prevention and shape best practices.

Clinical Pearls

Physicians can advocate for patients on a personal, local, state, and national level.
Physicians can contribute to research to further best practices to prevent sexual abuse in this vulnerable population.

Conclusion

Where interagency collaboration is evident, there is improved response to people who report sexual assaults. Instituting an interagency guidance document to increase collaboration and improve response to assaults is a necessity. Preventive measures require education programs for the general population regarding ID awareness as well as sexual assault in ID. There is a need for legislation that supports legal capacity and enhances autonomy. Empowering persons to make informed decisions could prevent some assaults; it will also serve victims of assault with reporting and recovery. Individual service plans for persons with ID should always include risk assessments and security plans to promote harm reduction. While some studies have identified methods to increase knowledge and build skills, generalization of skills to real-life situations and maintenance of knowledge was often not achieved and must be remedied. Disability and sexual assault prevention advocates (including self-advocates) must coordinate resources and efforts to develop an evidence-based program to achieve harm reduction. Finally, the intersectionality of the ID population must be recognized and respected; the interventions and strategies implemented to prevent and protect must follow suit.

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