A Transgender Woman With Intellectual Disability and Borderline Personality Disorder
“Ms. A” is a 23-year-old transgender woman (assigned male at birth) with a history of fetal alcohol syndrome, mild intellectual disability (a full-scale IQ of 60), and borderline personality disorder. She received primary care and support through a regional intellectual disability agency but was also well known to psychiatric services for frequent violent outbursts and recurrent self-harm gestures.
Ms. A’s interactions with the mental health system began before age 5. She was adopted at birth into a home with other special-needs siblings. Early records reflect her difficulty with impulse control and anger management. By age 8, she was frequently wearing makeup or girls’ clothing. By age 16, she consistently identified as female, wearing articles of women’s clothing at school and soliciting her sisters’ boyfriends. She made frequent self-harm gestures, such as cutting herself in the school hallway as well as threatening suicide, and she occasionally responded with violence toward peers or siblings who taunted her.
During adolescence, Ms. A used social networking sites to find potential dates, often meeting older men in dangerous situations. Her high-risk behaviors continued; she often threatened “to turn myself into a girl” with knives, and she asked a man to “rape and kill me.” By age 23, she had more than 15 referrals to mental health crisis units for behavioral issues, typically leading to inpatient hospitalizations. Despite support in her gender identity by her adoptive mother, she was unable to find services that provided hormone or surgical transition services for transgender youths and therefore had not received either intervention. Her main social service provider for intellectual disability also did not provide resources for transgender youths.
Police last brought Ms. A to our facility after she threatened herself with scissors when a peer referred to her as a boy. She appeared tall and thin, looked younger than her age, and had a speech impediment with a significant lisp. She also exhibited dysmorphic facial features consistent with fetal alcohol syndrome, shoulder-length blonde hair, and faint beard growth. She frequently hunched over, hiding her face in her hands or behind her hair. She moved awkwardly and frequently missed social cues, unintentionally provoking anger from peers on the inpatient unit.
On admission, Ms. A wore pink pajama pants and a loose-fitting T-shirt. She commonly wore pink T-shirts with adolescent slogans during her stay. She usually engaged readily and eagerly with staff and peers, but she was often childish in her mannerisms, consistent with intellectual disability. Throughout her stay, she displayed limited frustration tolerance and frequently responded to misidentification of her gender with dramatic displays of emotion.
Staff was unsure how to address Ms. A. Some were outwardly hostile. On one occasion, a staff member was overheard saying, “I’m not going to call that a she.” Documentation from Ms. A’s previous contacts with service agencies revealed unfamiliarity with transgender terminology and frequent dismissal of her transgender status. Of 15 intake notes, only two referred to her gender with correct pronouns; others documented male pronouns; some used both male and female pronouns; one avoided mentioning gender altogether. One writer noted, “He is trying to be transgender.” Others frequently put the transgender modifier in quotation marks.
Ms. A’s treatment team made several attempts to change her recorded gender on her hospital identification to prevent misidentification on subsequent admissions. Although gender misidentification was a trigger for many of her admissions, this was rarely included as part of her treatment plan. Most inpatient treatment focused on bolstering coping mechanisms before discharging her to the care of her service agency. The issue of her transgender status was often unaddressed, sometimes even actively avoided.
Ms. A was unable to be discharged back to her adoptive mother’s house. She and her mother sought a group home placement through the intellectual disability regional services. However, the local group homes were gender segregated, and the homes for females would not accept Ms. A, who often looked like a young man. Meetings between the family, the mental health team, and intellectual disability regional services revealed no known housing resources in the area that would meet her gender, intellectual, and mental health needs.
Diagnostic criteria for intellectual disability, borderline personality disorder, and gender dysphoria all emphasize functional impairments over simple trait descriptions (1). Individuals with intellectual disability have functional deficits in conceptual, social, and practical domains. Social deficits include difficulty perceiving and interpreting social cues with peers, problems with emotional regulation, and limited understanding of risk in social situations. As in the case of Ms. A, these individuals are at risk for being manipulated by others, especially in romantic relationships. The deficits in borderline personality disorder are similarly characterized by a defining pattern of instability of self-image, personal goals, interpersonal relationships, and affect, as well as impairment in domains of identity, self-direction, empathy, and intimacy (1). Individuals with gender dysphoria also experience internal conflict, distress, and varied psychiatric symptoms, in part as a result of the personal and societal stressors they face in understanding their situation.
Discussion
There can be significant overlap in presentation of individuals with combinations of gender dysphoria, intellectual disability, and borderline personality disorder (Figure 1). However, care is typically partitioned to service agencies focusing specifically on intellectual disability, mental health, or gender care. This type of segregated treatment can easily mistake symptoms of one condition for those of another. In the case of Ms. A, many of her childlike, developmentally consistent frustrations over her gender expression were treated as poor coping responses, consistent with borderline personality disorder. Subsequent treatment focused on her borderline personality disorder, without addressing her gender identity concerns. This segregation of diagnoses can create parallel systems that may force clients to choose between treatment for one condition over another. Ms. A often faced both group homes and inpatient psychiatric hospitals that housed clients by gender, creating sex-segregated barriers to care for her and other transgender clients.
FIGURE 1. Overlap in Presentation, Symptoms, Treatment, and Outcomes of Gender Dysphoria, Intellectual Disability, and Borderline Personality Disorder
Transgender individuals, even without the complexities of multiple diagnoses, face barriers when trying to access health care, including medical knowledge deficits; limitations in the availability of transition-related medical care; and health system discrimination. In a 2011 report on a national survey (2), 25% of transgender people surveyed reported having been harassed or disrespected in a doctor’s office or hospital, and 19% of transgender people reported having been refused medical care because they were transgender.
People with intellectual disability also frequently have difficulty accessing appropriate sexual and gender health care (3). Appropriate sexual expression has long been a source of potential conflict for persons with intellectual disability, especially those who live in highly structured settings (4). Individuals with intellectual disability often have lower sexual education, higher rates of sexual abuse, less understanding of sexual appropriateness, and delayed sexual and relational developmental milestones. These factors predispose them to escalating incidents of sexually acting out when they are not allowed appropriate venues to explore and express their sexuality (5). The risk of sexual vulnerability and issues of consent within relationships are important concerns within this population. Historically, these concerns often led to discouragement of any type of sexual expression. People with intellectual disability often face an environment that universally represses sexuality (6).
A person with both intellectual disability and open transgender identity currently has few opportunities for peer support or dedicated resources within the intellectual disability community. While suppression of gender or sexuality variances for someone with an intellectual disability may help them avoid some painful confrontations, this unacknowledged part of their identity can manifest in greater dependency as well as unsafe and undisclosed relationship behaviors that can leave the person open to victimization and suffering.
In the case of Ms. A, who consistently voiced her gender distress, her treatment team identified her need for appropriate gender treatment as part of her mental health care. Because of Ms. A and other transgender clients, the hospital initiated staff sensitivity training and reviews of gender policies to develop more transgender-sensitive care.
Conclusions
The case of Ms. A highlights the challenges and complexities in the formulation, treatment, and provision of services for individuals with combinations of intellectual development, mental health, and sexual and gender identity needs. Currently, there are growing resources for sexual and gender minorities, but these systems often do not routinely have collaborative treatment services for management of shared clients. Systems are more often prepared to deal with only one problem at a time. There are likely many people with gender dysphoria, intellectual disability, and mental health issues who will need transitional services as it becomes safer for them to publicly transition.
1
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