Feature Issue on Sexuality and Gender Identity for People with Intellectual, Developmental, and Other Disabilities

Clear-language summary

People with disabilities have faced a lot of abuse and have been treated unfairly when it comes to their sex lives and the way they express their gender. More than half of adults who are transgender (meaning they feel as though they are a different gender than the one they were assigned at birth) report having a disability, so this is an important issue to study. The good news is that people with disabilities are more often being asked to participate in research and create education materials about these topics. They are taking more control of planning their own futures based on what is important to them, and this includes their choices about sex, romantic relationships, and expressing their gender identities. Some researchers have found that autistic people who are already familiar with behavior as a spectrum may naturally be more open to understanding gender, for example, as more than just a male or female option. Other researchers have found strong connections between disability identity and identities linked to sexuality and gender, so understanding these together is important. Online dating is becoming more accessible, but there is a need for better training in staying safe from predators online. More clinicians are recognizing the need to educate natural and professional caregivers about how to better support the sexuality and gender expression of people with disabilities. but more programs and training are needed.

It is no secret that people with intellectual and developmental disabilities (IDD) experience ongoing discriminatory and abusive practices related to their sexuality and gender identities. This includes experiences of compound discrimination, sexual abuse, and exploitation, and can also lead to mental health concerns, including suicidal thoughts. Despite these concerns, we also live in a world in which people with IDD are increasingly influencing research related to the links between sexuality, disability, and gender, communities continue to grow around these experiences, and the field is moving from a perspective rooted in protection to one exploring the possibilities that a more fulfilling sexual life and gender expression could have for people with IDD. Still, this can be a tough time for youth and young adults who are developing their own sense of identity and belonging. Consider, for example, a 26-year-old cisgender male diagnosed with autism and an intellectual disability who also identifies as gay. He struggled in early adulthood to discuss his sexuality with his support team. He felt he was incapable of explaining his experiences because he lacked the appropriate language and felt so different from those around him. It wasn’t until he discovered an LGBTQ+ support group in his community that he was able to come out to his family. He connected with another person with IDD in the group who provided support and education, but still experiences discrimination and isolation from his family that he continues to work through. His experiences with this group highlight the importance of community and the existence of the group itself is an example of a wider trend of increased awareness.

Recent data from the Human Rights Campaign Foundation shows that 36% of adults who identify as LGBTQ+ and 52% who identify as transgender also report having a disability. Cognitive disability is the most commonly cited disability within this group. When LGBTQ+ youth aged 13-17 were surveyed, 15% reported having a disability . Given the significant overlap of LGBTQ+ identity and disability, this is an extremely relevant issue which is also being reflected in recent research and service trends.

Research Trends

Within disability research, it is unfortunately common to read studies discussing the experiences of disabled adults and youth that are solely from the perspectives of caregivers or service providers. And although these perspectives are important, both in research and in community practice, there has been a push to use principles of self-determination when future planning with youth and young adults with disabilities. This has put the focus on prioritizing what the individual wants, not solely what others think is best for them. There has also been a significant increase in community engaged research (CER) studies that are produced with, and include the voices of, individuals with disabilities. These studies originate throughout the world, including in the United States, Canada, Australia, and Sweden. This allows for research that is not only conducted in a way that is more accessible to all, but also addresses topics that are more relevant to the daily lives of people with disabilities. One of those topics that has emerged and grown from this is a focus on how we are understanding the intersection of sexuality and gender identity and disability. A study in the Canadian Journal of Disability Studies by Alexandre Baril and colleagues emphasized how an individual’s disability identity and sexuality or gender identity are significantly linked and that it is important to conceptualize and understand the totality of this intersection.

Sexuality or relationship education is more consistently being placed in future planning for individuals with disabilities.

A 2022 meta-analysis by Aimilia Kallitsounaki and David M. Williams provides an interesting review of the literature around autism and gender identities, indicating that as individuals with autism come to understand their social and internal experiences as “on a spectrum” they translate this understanding to their gender identity and are more open to non-binary labels and experiences . More inclusive sexuality and gender identity education is also being discussed. Rhonda Black of the University of Hawaii and I found in a recent program review that previous education focused mainly on basic anatomy and abuse prevention, but we have seen more topics related to relationship development , healthy relationships, and LGBTQ+ issues. The long-term, negative effects of a lack of education on these topics are substantial. In a 2022 issue of the International Journal of Environmental Research and Public Health, Abigail Mulcahy and colleagues found that many LGBTQ+ adults with disabilities experienced significant unmet healthcare needs due to individuals and healthcare workers both being unaware of potentially different sexual health needs for this population. Literature reviews conducted in 2016 and 2018 showed an expressed need to provide more effective support to people with IDD who also identify as LGBTQ+. A 2020 study by Samuel M. Colbert & Jacob Yuichung Chan found indications that these gaps in healthcare and education are due to a lack of knowledge on LGBTQ+ issues. Recent research has shown an overall trend toward increased prosocial behaviors toward individuals with disability and LGBTQ+ identities, although there is still more work to do in this area relating to sexuality identities in general. Targeted education is needed to help LGBTQ+ individuals with disabilities become more aware of their own needs and gain advocacy skills, as well as to help service providers and direct support professionals become more responsive to those needs and work toward reducing stigma and discrimination.

New Understanding

The concept of sexuality and gender as “spectrums” instead of rigid categories has become more commonplace, especially among youth and young adults. Many people with autism already conceptualize their identity as being on a spectrum, so understanding their sexuality or gender identity that way is not a tough jump to make. Anecdotal results from clinical interviews conducted with people with autism showed a significant number use non-binary language to describe their sense of themselves and the types of people they may be interested in dating. When asked how they came to identify themselves as agender, one 23-year-old individual stated that increased media representation for LGBTQ+ individuals, as well as awareness of and access to non-binary language, helped them form a clearer and more cohesive picture of who they are and what they have been feeling and experiencing.

In clinical and educational settings, sexuality or relationship education is more consistently being placed in future planning for individuals with disabilities. Many secondary education programs for people with disabilities are adding relationship education components to their programs. Some, including the Education for Older Adults and Adults with Disabilities program at Mt. San Antonio College, have added classes related to sexuality and healthy romantic relationships. These programs often include awareness and recognition of LGBTQ+ topics and provide space for discussion, education, and exploration. In the same vein, social skills and social awareness programs are also increasing content around romantic relationships and sexuality and gender identity. For example, the UCLA PEERS® clinic, with its multiple programs focused on social and relational skills, has recently developed a program focused solely on dating skills for adults with autism that includes conversations about sexuality, gender identity, and healthy relationships.

The use of online dating platforms across all communities continues to increase, and online dating has become more accessible and effective for people with disabilities. Many adults report online dating as a way to connect with others in a safer space that is more accommodating to their social anxieties. For some of these adults, there is a desire to engage in online dating, but a lack of understanding how to do so safely, and while many new education programs have begun addressing this, it is still an area of need.

There has also been an increased awareness for clinicians working in this area around the importance of including an individual’s support system.

Clinicians are beginning to recognize the importance of including an individual’s support system in their care and treatment. For example, a 33-year-old individual who had an intellectual disability and identified as LGBTQ+ was attending individual therapy sessions due to struggles with engaging in online dating. Positive change did not occur with the client until the clinician pulled the individual’s sister—their main support person—into therapy and coached her on how to discuss these concerns at home instead of simply avoiding the topic, which had been causing anxiety and frustration for the individual. These community trends indicate a significant move forward in providing inclusive, comprehensive, and affirming care for individuals with disabilities who identify as LGBTQ+.

We Need to Know More

Despite these positive trends, more needs to be done. Individuals with a disability, their families, support professionals, and schools, need better access to the growing number of resources becoming available to assist people with disabilities to live fully as sexual beings. We need further research that focuses on experiences, social change, and reaching towards equality that specifically includes the voices of people with disabilities. We also need to increase programming and access for these individuals in the community, as well as providing trainings and awareness for clinicians and other community providers to make them feel more comfortable and competent in working in this area. Until then, individuals with disabilities will continue to fight to be seen and heard and engage in experiences true to themselves and their identity.

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