“They Knew Something Was Different About Me, They Date Raped Me”: A Pilot Study on the Sexual Victimization Experiences of Adolescents and Young Adults with Differences of Sex Development/Intersex Variations

Abstract

Sexual and gender minority (SGM) communities experience an increased risk for sexual victimization. Because these rates are reported in aggregate, little is known about the unique experiences of sexual violence among individuals with differences of sex development/intersex variations (DSD/I). The purpose of this study is to describe the experiences of sexual victimization in adolescents and young adults (AYAs) with DSD/I as part of a larger qualitative study exploring experiences of minority stress, stigma, and resilience. Participants were recruited through multidisciplinary care clinics and DSD/I support groups in the United States and the Netherlands. Data on sexual experiences and sexual health were analyzed thematically, with a specific focus on reports of sexual victimization. Of the 20 participants, 25% reported experiences of sexual violence. Experiences were reported across gender identities and DSD/I diagnoses. Participants described experiences as (a) resulting from DSD/I, (b) exacerbated by DSD/I, or (c) healthcare practices experienced as sexual violence. Medicalization, early loss of (bodily) autonomy, and cisgender heteronormative reproductive societal norms were reported as possible factors associated with sexual victimization experiences. The sexual victimization of individuals with DSD/I appears prevalent and associated with specific risk factors and, therefore, deserves clinical and scientific attention.

1. Introduction

Sexual victimization includes all forms of nonconsensual sexual contact, including sexual harassment and assault, dating violence, and stalking [1]. Sexual and gender minority (SGM) communities are at higher risk for sexual victimization [2]; however, little is known about SGM subgroup differences, including in those with differences of sex development/intersex variations (DSD/I). DSD/I are congenital conditions characterized by variations in sex characteristics, including genes, gonads, and/or reproductive organs. DSD/I are defined relative to conventional understandings of male and female bodies (see Hughes, Houk, Ahmed, Lee, and Society, 2006, for an overview of DSD/I conditions [3]), with an estimated prevalence ranging from 0.2% to 1.8% [4]. To date, no empirical studies have reported on the experiences of sexual victimization among individuals with DSD/I. To address this gap, we explored the experiences of sexual victimization in adolescents and young adults (AYAs) with DSD/I. Given the exploratory nature of the larger study and the small sample size, our objective was to capture a comprehensive range of potential themes, including those identified from individual experiences, rather than only those recurrent across multiple participants.

2. Methods

Data were collected from a larger, multicenter, international qualitative study on the experiences of stress, stigma, and resilience among AYAs with DSD/I aged 16–39 [5]. The primary research team consisted of six members, including a cisgender, queer female-identifying psychologist (interviewer), two cisgender, heterosexual female-identifying psychologists, an intersex and transgender-identifying patient health educator, a queer, intersex female-identifying psychiatrist, and a cisgender male-identifying, gay psychiatrist/sexologist (interviewer). A seventh team member, a queer female-identifying research assistant, was added to support qualitative analysis for the current project. Participants were recruited from interdisciplinary DSD/I outpatient clinics and through InterConnect—a US community-based support group for DSD/I—and intersex community support groups in the Netherlands.

For the current study, all interviews were transcribed and de-identified. Interviews conducted in Dutch were also translated to English. Transcripts were specifically reviewed for content related to sexual experiences and related risk factors (e.g., sexual victimization, sexual health, sexual well-being, and intimacy experiences) and coded thematically using a reflexive thematic analysis approach [6,7]. Reflexive thematic analysis, as used in this study, involved an iterative and inductive process in which we actively engaged with the data to identify, analyze, and interpret patterns of meaning within the broader socio-cultural context of DSD/I. This approach emphasizes the researcher’s role in theme development rather than relying on predetermined coding frameworks.

3. Results

3.1. Participant Characteristics

Twenty participants between the ages of 16 and 39 (M = 29, SD = 7.97) were recruited; 25% reported experiences of sexual victimization (n = 5). See Table 1 for characteristics of participants reporting sexual victimization.

Table 1. Self-reported participant characteristics.

	Gender Identity *	Assigned Sex at Birth	Age	Country	Race and Ethnicity	Sexual Orientation	DSD/I Diagnosis
Participant 1	Female	Female	39	US	White	Bisexual, pansexual	MRKH
Participant 2	Female, Intersex	Male	19	US	Latinx, white	Heterosexual, queer	Gonadal dysgenesis
Participant 3	Female, Intersex	Female	39	US	American Indian, white	Asexual	CAIS
Participant 4	Male, Nonbinary, Intersex	Female	37	US	White	Queer	Classic CAH
Participant 5	Intersex	Female	31	US	White	Lesbian, queer	PAIS

* Multiple options possible; CAH = Congenital Adrenal Hyperplasia, CAIS = Complete Androgen Insensitivity Syndrome, MRKH = Mayer–Rokitansky–Kuester–Hauser, PAIS = Partial Androgen Insensitivity Syndrome.

3.2. Qualitative Analysis

Qualitative analysis revealed three sub-categories of sexual victimization associated with DSD/I: (a) targeted sexual victimization as a result of DSD/I; (b) sexual victimization exacerbated by DSD/I; and (c) healthcare practices experienced as sexual victimization. Additionally, participants reported three sub-categories of DSD/I-specific risk factors for sexual victimization, including (a) medicalization/loss of autonomy; (b) reluctance to seek support due to shame/history of dismissal; and (c) self-stigma related to hetero- and cisnormative beliefs. These themes, the number of participants who reported them, and exemplar quotes are included in Table 2.

Table 2. Study themes and selected participant quotes.

Theme	Category	n	Exemplar Quote
Association of DSD/I with Sexual Victimization	Targeted Sexual Victimization due to DSD/I	4	“Two guys found out that I was…a hermaphrodite… they didn’t really understand… MRKH… but they knew there was something different about me… they… date raped me.” (Participant 1) “[My cousins] already knew that I looked different down there because my grandma had a pool, so we would change into our swim stuff, so I guess they must have noticed, and they’re the ones that started touching me more and like trying to [force us to do different] kind of things.” (Participant 2) “I did have a date years ago who, when I told him I was intersex, basically demanded that he, like he needed to see… and he pushed me down on the bed and basically tried to rape me.” (Participant 3)
	Sexual Victimization Exacerbated by DSD/I	1	“And having CAH, I didn’t have…I don’t have a typical vaginal canal. I had an almost closed off vaginal canal, so that creates issues with any kind of penetrative anything, so as you can imagine, somebody violently assaulting me and you don’t have a typical vaginal canal that creates a lot of physical trauma.” (Participant 4)
	Healthcare Practices Experienced as Sexual Victimization	1	“I experienced, I would call it…sexual assault in a healthcare setting with genital examinations that were… routine and unnecessary… I felt powerless and forced during those times. I felt like an object, not a person … I feel like the genital examinations are… the most victimizing experience that I had.” (Participant 5)
DSD/I-Specific Risk Factors for Sexual Victimization	Medicalization/Loss of Autonomy	3	“He [a romantic partner] would kind of play up on my insecurities so that I would do more sexual stuff with him because I’d be insecure about well, no one else will ever want me, because I needed proof that someone would want me kind of thing.” (Participant 1)
	Reluctance to Seek Support due to Shame/History of Dismissal	1	“Had I been forward about being intersex, which I wasn’t able to be at that time, I wonder if the police case would have gone differently.” (Participant 4)
	Self-Stigma and Intimacy Barriers Related to Hetero- and Cisnormative Beliefs	2	“[I had] intimacy issues because of MRKH…I had problematic drug use because I wanted to feel comfortable having sex…[I worried] how many will comment on if my vagina’s too small.” (Participant 1) “I would say it definitely, like…boosted like my feelsings of loneliness. I feel like it also, like… I think it also relates to me being hyper sexual, like wanting to be desired by people, stuff like that.” (Participant 2)

3.3. Sub-Categories of Sexual Victimization

3.3.1. Targeted Sexual Victimization as a Result of DSD/I

Multiple participants described sexual victimization linked directly to the assailant’s knowledge of their DSD/I. Specifically, participants explicitly recounted experiences in which others found out about their variation and demanded to see and touch their bodies and/or performed other unwanted sexual acts. They also described the psychological impact of these incidents. Participant 1 reported feeling “targeted because of being a minority”, participant 2 reported having “childhood trauma from being molested”, and participant 3 described needing to prove herself as a woman since her physical anatomy was questioned.

Multiple participants described experiences how, after others knew about their sex differences, they demanded to see and touch their bodies and performed other unwanted sexual acts. Participant 3 shared:

“I did have a date years ago who, when I told him I was intersex, basically demanded that he, like he needed to see… and he pushed me down on the bed and basically tried to rape me.”

This participant also described feeling like she needed to prove herself as a woman to her date since he questioned her physical anatomy. The perpetrator reportedly stated, “I can’t date someone who’s… He was like you’re lying to me”.

3.3.2. Sexual Victimization Experiences Exacerbated by DSD/I

Atypical genital anatomy may exacerbate the physical harm of coerced sexual contact for individuals with DSD/I. Participant 4 described an incident of sexual victimization that was exacerbated by their physical anatomy:

“And having CAH, I didn’t have…I don’t have a typical vaginal canal. I had an almost closed off vaginal canal, so that creates issues with any kind of penetrative anything, so as you can imagine, somebody violently assaulting me and you don’t have a typical vaginal canal that creates a lot of physical trauma.”

This participant also ascribed responsibility for the assault to their physical differences. They believe the assailant had difficulty penetrating them, which likely caused the assailant to be upset and continue to forcefully try.

3.3.3. Healthcare Practices Experienced as Sexual Victimization

Though the questionnaire specifically asked about sexual victimization and negative healthcare experiences, healthcare practices experienced as sexual victimization were not explicitly probed. While only one participant spontaneously reported this experience, it is possible others may have also reported it if asked directly. Participant 5 experienced aspects of medical care as sexual victimization, describing intrusive physical exams and boundary violations by having too many people observing intimate medical appointments. They stated:

“I experienced, I would call it…sexual assault in a healthcare setting with genital examinations that were… routine and unnecessary… I felt powerless and forced during those times. I felt like an object, not a person … I feel like the genital examinations are… the most victimizing experience that I had.”

This participant felt like they had no power to choose how medical providers handled their medical care. They described feeling like it “was a lack of actual care” from the provider. They further described feeling like these experiences at a young age, which “affected [themselves] and [their] body” and has led to “a lot of stored trauma and stress”.

3.4. DSD/I-Specific Factors Potentially Associated with Sexual Victimization

3.4.1. Medicalization/Loss of Autonomy

One contextual factor perceived as conferring risk for sexual victimization was feeling medicalized from a young age, including the experience of loss of bodily autonomy in the context of unwanted medical examinations. Participants described subsequent body image problems and difficulties with boundary-setting, which they perceived as making them more vulnerable to sexual victimization.

3.4.2. Reluctance to Seek Support Due to Shame/History of Dismissal

Participants struggled to seek support after sexual victimization due to feelings of shame related to their DSD/I or a history of being dismissed. For example, one participant described a childhood history of sustained victimization that was not interrupted by adults and further explained feeling ignored by adults regarding this concern. This participant also reported the suspicion that the police might have responded differently to a report of adult sexual assault had they known about the participant’s intersex status. However, this participant did not expand upon why they believed the police may have responded differently. It is possible that they worried about being ignored or dismissed in this situation as well.

3.4.3. Self-Stigma and Intimacy Barriers Related to Hetero- and Cisnormative Beliefs

Furthermore, societal attitudes toward sexuality, gender, and reproduction caused participants to perceive their bodies as anomalies. This self-stigma, which may also be described as internalized interphobia, was reported by multiple participants with challenges in physical intimacy. These, in turn, were linked by participants to difficulty setting boundaries, added pressure to engage in activities without their consent, and increased risky behaviors (i.e., substance use) to help cope with distress.

4. Discussion

This exploratory pilot study suggests that sexual victimization is not uncommon among people with DSD/I. While this sample size was relatively small, the reports of sexual victimization are not inconsequential, with 25% of our study, or 5 out of 20 participants, endorsing a history of sexual victimization. These numbers are comparable to the rates of completed or attempted rape among women reported by the CDC but lower than the over 50% lifetime experiences of sexual victimization involving physical contact in women [8]. However, this difference may be due to under-reporting, as sexually violent experiences were not a focus of the study, which may have limited the information provided by the participants.

Our data suggest that stigma, shame, and minority stressors may be risk factors for sexual victimization among individuals with DSD/I. Participants described feeling targeted by perpetrators because of their anatomic variations and difficulty setting boundaries due to internalized inferiority, past experiences with victimization and loss of autonomy, including in medical settings, and pressure to prove their acceptability. This is consistent with previous work hypothesizing that people with DSD/I may be vulnerable to sexual victimization due to both individual (e.g., body image issues, experiences with lack of autonomy) and societal factors (e.g., normative sex education, invalidating SGM voices) [9].

Notably, one participant spontaneously reported experiencing sexual victimization in a healthcare setting. While sexual boundary-crossing in the doctor–patient relationship is typically understood as overtly ‘sexualized’ contact between the patient and doctor [10], our participant perceived even ‘routine’ clinical encounters as sexual violence and repeatedly failing to respect (bodily) autonomy from a young age. This participant’s experience aligns with a recent qualitative study exploring healthcare experiences among adults with DSD/I, which identified themes of medical trauma, particularly related to traumatic physical exams and boundary violations by healthcare providers [11]. Haghighat and colleagues further highlight the lasting impact of medical trauma, including the potential need for mental health services, avoidance of medical care altogether, and the importance of trauma-informed approaches when working with individuals with DSD/I. Additionally, human rights advocates have long criticized routine medical interventions for children with DSD/I as intrusive and traumatizing [12]. Our findings suggest that pediatric healthcare approaches to DSD/I bodies, in addition to sex variation itself, may contribute to issues with boundary-setting and body image later in life [12]. These insights reinforce the need for medical care frameworks that prioritize autonomy, consent, and psychological well-being in the treatment of individuals with DSD/I.

4.1. Clinical Implications

Clinicians supporting individuals with DSD/I must explore experiences related to sexual victimization among their patients. Implementing trauma-informed care, as previously demonstrated in pediatric and gynecological settings, is crucial [13,14]. Interdisciplinary teams serving patients with DSD/I should include medical and psychosocial providers who are able to implement trauma-informed approaches [3]. Mental health providers can help implement a trauma-informed approach which may alleviate stress associated with physical exams and create safe environments for patients to disclose a history of sexual violence. To create a safe and comfortable environment, providers should implement minimizing room occupants during physical exams and engage in informed consent processes for care, including explaining details of procedures beforehand, offering alternatives, involving patients in decision-making, and empowering patients to ask questions or express concerns.

Interdisciplinary teams are encouraged to have a team member who can screen for sexual victimization, educate on sexual health and consent, and provide resources when a patient reports negative sexual experiences. Patients may have difficulty disclosing these experiences initially due to shame or stigma. Further, a patient’s various intersecting identities (e.g., race/ethnicity, gender identity, gender expression, age) may make these conversations increasingly difficult. Thus, it is imperative that clinicians create a safe environment for patients to be able to discuss these topics. This aligns with earlier research describing a wish for more openness to discuss sexual health in DSD/I medical care [9].

4.2. Strengths and Limitations

This pilot study was the first to explore sexual victimization experiences among individuals with DSD/I, signaling their unique experiences. While the sample size was small, random sampling suggests sexual victimization experiences are likely common. Under-reporting is common in sexual victimization studies [15], and this study was not designed to directly elicit experiences of sexual victimization. It is possible that more specific questions related to sexual victimization, especially within healthcare settings, may have yielded different information. Given these limitations, this study is primarily exploratory. Future research should explicitly focus on sexual victimization among those with DSD/I, potentially integrating questions into national surveys or population studies for broader prevalence data. Additionally, studies should focus on understanding the experiences of those with DSD/I in healthcare settings to provide insight into how medical and mental health providers can best support their patients. Furthermore, including trauma measures and outcomes in clinical research on DSD/I can provide further insights as well.

5. Conclusions

This study demonstrated a range of sexually violent experiences that individuals with DSD/I may experience. Those with DSD/I may face unique stressors that exacerbate experiences of sexual violence, including targeting sexual victimization, victimization exacerbated by DSD/I condition, and possible healthcare practices experienced as sexual victimization. Increased clinician sensitivity and implementation of trauma-informed care will likely have a beneficial effect.