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International Journal of Transgender Health logoLink to International Journal of Transgender Health
. 2019 Apr 22;21(1):98–110. doi: 10.1080/15532739.2019.1594484

LGBTQ + and autism spectrum disorder: Experiences and challenges

Ashleigh Hillier a,✉, Nicholas Gallop a, Eva Mendes b, Dylan Tellez a, Abigail Buckingham a, Afreen Nizami a, Derek OToole a
PMCID: PMC7430467  PMID: 33005905

Abstract

Background: Research focused on gender identity, autism spectrum disorder (ASD), and the experiences of those who identify as LGBTQ+, remains minimal. Initial findings have indicated that those on the autism spectrum may be more likely to identify as homosexual and experience more fluid gender identity. Insufficient consideration has been given to intersectionality around a disability status and gender identity, and few have focused this conversation specifically on the experiences of those with ASD.

Aim: The aim of this study was to improve current understanding of the first-hand experiences of those on the autism spectrum who identify as LGBTQ+, particularly regarding challenges stemming from these dual identities.

Method: A focus group was conducted with four participants with ASD who presented with a range of gender identities (as they defined them) including male, transgender; agender/nonbinary; agender; and queer.

Results: Qualitative analysis of the focus group transcription identified key themes: (1) Effect of Dual Identities: experiencing dual identities, autism spectrum, and LGBTQ+; (2) Multiple Minority Stressors: challenges experienced by the participants, the impact of discrimination/misunderstanding, and holding minority statuses; (3) Isolation: barriers caused by lack of understanding; (4) Lack of Service Provision.

Discussion: These preliminary findings underline the need for better support, understanding, and practices regarding sexuality and gender identity among those on the autism spectrum. The current study is important for giving voice to adults on the autism spectrum who identify as LGBTQ+, and has implications for the disability community more broadly.

Keywords: Autism spectrum disorder, gender identity, gender diversity, intersectionality, LGBTQ+

Autism Spectrum Disorder (ASD) is characterized by impairments in social interaction and communication, as well as restricted, repetitive, and stereotyped patterns of behavior (American Psychiatric Association, 2013). The Centers for Disease Control and Prevention (2015) estimates the prevalence of ASD to be one in every 68 children; one in every 189 females and one in every 42 males (CDC, 2014). The majority of autism-related research has focused on children with much less attention paid to adults, particularly around issues of sexuality and gender diversity. The terms Lesbian, Gay, Bisexual, Transgender (trans*), Queer or Questioning (LGBTQ) refer to the self-identifications used by individuals to describe their sexual orientation and their gender identity. In the U.S., data from Gallop estimated that in 2016 around 10 million people, or 4.1% of the U.S. adult population, identified as LGBT (Gates, 2017). Currently there is no reliable estimate for the prevalence of individuals with ASD who identify as LGBTQ+. The current study sought to give voice to adults on the autism spectrum who identify as LGBTQ + and examine their first-hand experiences and opinions on awareness within society of ASD, LGBTQ+, and these dual identities, and how they perceive others responding to them.

Members of the LGBTQ + community frequently experience notable barriers, discrimination and prejudice. A recent report published by the Gay and Lesbian Alliance Against Defamation (GLAAD) reported an increase in the number of non-LGBTQ identified individuals (n = 1,897) who felt “very” or “somewhat” uncomfortable in personal situations, like learning a family member is LGBTQ (28% in 2016 v 30% in 2017) or learning their doctor is LGBTQ (28% in 2016 versus 31% in 2017). In the same report, GLAAD (2018) reported an 11% increase between 2016 and 2017 in reported discrimination against LGBTQ individuals (n = 263) (GLAAD, 2018). Research has found that publicly identifying as LGBT has been linked to victimization in schools (Russell, Toomey, Ryan, & Diaz, 2014), and discrimination in the work place (Hewlett & Sumberg, 2011). Less research has been conducted on the victimization or discrimination on the queer or questioning communities.

Annual surveys collected by the National Opinion Resource Center (Smith, 2011) have shown a changing societal view of gay male, lesbian, and bisexual relationships. In 2010, the percentage of those who considered these relationships "always wrong" dropped to 44% compared to 72% in 1991, a pattern reflected in many countries around the world (Smith, 2011). This increase in acceptance is not reflected in the trans* community. A survey of 6,450 transgender individuals across the United States found 63% of participants reported experiencing serious discrimination, or events that threaten an individual's financial, emotional, mental, and physical stability (Grant et al., 2011). The effects of being discriminated against due to gender identity include higher rates of attempted suicide (1.6% vs 41%), and double the rate of unemployment (7% vs 14%) when compared to the general population. Individuals who identify as LGB report poorer mental health caused by increased stress, victimization, and discrimination compared to sexual non-minorities (Hatzenbuehler, Hilt, & Nolen-Hoeksema, 2010). Both members of the LGB community (Everett, 2015) and transgender and gender diverse community (Grant et al., 2011) report less access to social resources and networks.

Autism spectrum disorder and sexual orientation

According to the U.S. Census Bureau, 40.7 million people in America have a disability, or one in every 12 Americans (U.S. Census Bureau, 2017). There is no reliable estimate for the number of Americans with disabilities who identify as LGBTQ+, but research has found that the LGB and the transgender and gender diverse subpopulation has been marginalized by most sectors in society including health and social services, special education, and the disability rights movement. Many students with disabilities receive inadequate sex education, and information about sexual orientation is extremely limited or non-existent (see Duke, 2011). Living in supervised communal homes or with family, many young adults with disabilities have limited access to peers where typically developing young adults gain much information about sexuality and intimate relationships (Bleakley, Hennessy, Fishbein, & Jordan, 2009). They may have fewer opportunities to meet other potential partners and much less privacy and opportunities for intimacy. A limited network of social connections reduces their exposure to diversity, leaving them with few, if any, positive LGBTQ + role models. Providers typically have no policies in place for sex education, and indeed there is a lack of recognition by families and support staff that some individuals with disabilities may desire sexual activity or intimate relationships, and the issue is largely ignored (Brown & McCann, 2018; Friedman, Arnold, Owen, & Sandman, 2014).

Studies focused specifically on those on the autism spectrum who identify as LGBTQ + are scarce and has led to urgent calls for further research in this area (Bennett & Goodall, 2016; Øien, Cicchetti, & Nordahl-Hansen, 2018). Regarding sexual orientation some initial findings have indicated that those on the autism spectrum may be more tolerant towards homosexuality than controls. Self-reported sexual behaviors and experiences were compared between 50 Dutch and Belgian males with autism (15–18 year olds) and a control group of 90 males without autism matched on age and education level (Dewinter, Vermeiren, Vanwesenbeeck, Lobbestael, & Nieuwenhuizen, 2015). The results indicated similar frequency of same-sex feelings and experiences between the two groups, although those with autism were significantly more accepting towards homosexuality than the controls.

In a follow-up study Dewinter, De Graaf, and Begeer (2017) examined differences in sexual orientation, gender identity and romantic relationships among a sample of adults and adolescents on the autism spectrum (n = 675) and a typically developing comparison group (n = 8064). More participants on the autism spectrum reported same sex attraction than the comparison group. Among women with ASD 6.1% reported being attracted to women only compared to 1.3% in the comparison group. This differential was less notable among men with 5.1% of those with ASD reporting being attracted to men only, and 3.8% of men in the comparison group. There was also a notable proportion (4.7% of the male ASD group compared to 1.1% of the male control group; 14.9% of the female ASD group compared to 1.6% of the female control group) which indicated sexual attraction to neither men nor women. These findings are supported in previous work indicating a higher prevalence of homosexual feelings and behaviors among males with ASD (Hellemans, Colson, Verbraeken, Vermeiren, & Deboutte, 2007), increased endorsement of nonheterosexual identity among (Barnett & Maticka-Tyndale, 2015), higher numbers of bisexual orientation (Hellemans et al., 2007; Rudolph, Lundin, Åhs, Dalman, & Kosidou, 2018), and lower endorsement of homo-, hetero-, or bisexual orientations compared to individuals without autistic traits (Rudolph et al., 2018).

Autism spectrum disorder and gender diversity

An increasing number of studies have found an association between ASD and gender dysphoria, defined by the American Psychiatric Association as a conflict between a person's physical or assigned gender and the gender with which he/she/they identify (American Psychiatric Association, 2013). A retrospective review of patient charts found an increased prevalence of ASD among children with gender dysphoria (Shumer, Reisner, Edwards-Leeper & Tishelman, 2016). Of the patients who presented with gender dysphoria 23% had possible, likely, or very likely Asperger Syndrome (a term now under the umbrella of “autism spectrum disorder”). Similarly, De Vries, Noens, Cohen-Kettenis, van Berckelaer-Onnes, and Doreleijers, (2010) found 7.8% incidence of ASD among those with gender dysphoria compared to the prevalence in the general population ranging from 0.6 to 1%. Two recent reviews summarized similar findings across multiple studies and concluded that there is a higher prevalence of ASD among children and adolescents with gender dysphoria than in the general population (Glidden, Bouman, Jones, & Arcelus, 2016; Van der Miesen, Hurley, & De Vries, 2016). Although data on adults is limited, a study conducted by Barnett and Maticka-Tyndale (2015) on adults with ASD (n = 24) reported a higher proportion of gender-variant identities than would be expected in the general population, providing support for an association between ASD and gender identity diversity in adults. Reports from individuals with ASD themselves also indicate higher rates of gender identity diversity. For example, Janssen, Huang and Duncan (2016) reviewed data from the Child Behavior Checklist (CBCL) for children diagnosed with ASD at the New York University (NYU) Child Study Center (n = 492) and found 5.4% endorsed the question “wish to be opposite sex.” In the general population it would be expected that around 0.7% would respond positively to the same question. Similarly, adults on the autism spectrum (n = 310, mean age 31.01 years) have reported a significantly larger number of gender-dysphoric traits compared to a matched sample without autism (George & Stokes, 2018). Correlations between ASD-related features and gender dysphoria have also been found (Heylens et al., 2018; Kristensen & Broome, 2015; Skagerberg, Di Ceglie, & Carmichael, 2015).

Data collected from parents also suggests a possible connection between ASD and gender diversity and they have reported greater gender variance and gender expression that does not match the norms of their child’s assigned sex, compared to parents of typically developing children (Janssen et al., 2016). However, May, Pang, and Williams (2017) found that while rates of gender variance among children and adolescents with ASD (6–18 year olds) were higher than among the general population, they were similar to rates among a sample referred to clinical services for mental health concerns. This could indicate that gender variance is not specifically associated with ASD but with neurodevelopmental disorders more broadly, and warrants further investigation.

The extent to which features of autism interfere with gender identity development has been debated. Gender dysphoria among those with autism has been associated with obsessive compulsive disorder (Landén & Rasmussen, 1997), sensory issues (Williams, Allard, & Sears, 1996), social, cognitive, and communication challenges (Abelson, 1981), theory of mind deficits, and cognitive rigidity (Jacobs, Rachlin, Erickson-Schroth, & Janssen, 2014). It has also been argued, as with those with disabilities more broadly, that individuals on the autism spectrum may have fewer opportunities to explore their gender identity and sexuality (van Schalkwyk, Klingensmith, & Volkmar, 2015), fewer educational opportunities, and experience social barriers that prevent them from receiving adequate sex education and relationship support (Hannah & Stagg, 2016).

Intersectionality

With increasing prevalence of ASD, particularly of individuals with an ASD diagnosis reaching adulthood (Happé et al., 2016), there is a growing need to understand diverse presentations. While there is recognition of the interplay between other minority statuses including gender, race, ethnicity, and class (Cho, Crenshaw, & McCall, 2013; Crenshaw, 2015), little consideration has been given to intersectionality around a disability status and gender identity (Miller, 2018; Thompson, Bryson, & de Castell, 2001), and few have focused this conversation specifically on those with ASD. The intersectionality framework conceptualizes the challenges associated with multiple stigmatized identities and intersecting systems of oppression (Cole, 2009; Wallace & Santacruz, 2017), and was endorsed by the American Psychological Association (APA, 2012) in both their Guidelines for Psychology Practice with Lesbian, Gay and Bisexual clients and in their Guidelines for Psychological Practice with Transgender and Gender Nonconforming People (APA, 2015). Those who hold multiple categories of identity experience a cumulative discriminatory impact which differs qualitatively from the prejudice experienced towards each identity individually. Many teachers, counselors, and other service providers are currently seeking knowledge regarding the issues and challenges faced by those on the autism spectrum who identify as LGBTQ + in order to build appropriate practical and therapeutic interventions. This study is the first to our knowledge to seek first-hand perspectives from this population on the cumulative impact of having ASD and identifying as LGBTQ+, the awareness within society of ASD, LGBTQ+, and these dual identities, and how they perceive others responding to them. We used a focus group qualitative analysis approach as a critical first step in exploring this area. The overall aim of this study was to improve current understanding of the first-hand experiences of those on the autism spectrum who identify as LGBTQ+, particularly regarding challenges stemming from these dual identities. Specific research questions to address this aim were: (1) how do those on the autism spectrum report understanding their gender identity and sexual orientation; (2) how do they consider the awareness and knowledge of others towards their dual identities; (3) what advantages/challenges have they experienced due to their membership in the autism and LGBTQ + communities?

Method

Participants and procedures

Four participants aged between 20 and 38 years with ASD took part in the focus group. All participants were white. Participants provided proof of a DSM-IV ASD diagnosis (e.g., a neuropsychological report conducted by a licensed clinical psychologist). Participants reported their sexual orientation and gender identity in open ended questions to allow them to use their preferred terms.

Participant 1 (aged 25) identified as male/transgender. They were a college graduate, lived with their parents, and held jobs as a waiter, entrepreneur, and autism support worker. They identified their sexual orientation as bisexual and pansexual. Pansexual is characterized by sexual desire or attraction that is not limited to people of a particular gender identity or sexual orientation (Merriam-Webster, 2018). Participant 2 (aged 23) identified as agender/nonbinary. They were also a college graduate, lived with their mother, and worked as an administrative assistant and freelance illustrator. They identified their sexual orientation as asexual (not experiencing sexual feelings towards others) and panromantic (to be attracted to all genders in a romantic way, but not necessarily in a sexual way). Participant 3 (aged 20) identified as agender. They were enrolled in a college degree, lived with their father, and were unemployed. They identified their sexual orientation as bisexual and gray asexual. Gray asexual refers to identifying in the gray area between asexual and sexual. Participant 4 (aged 38) identified as queer. They were a college graduate, lived with roommates, and worked part-time as an arborist. They identified their sexual orientation as lesbian.

Participants were all receiving counseling and were recruited through a flyer distributed at a private practice serving adults on the autism spectrum located in the north-east United States. They received a $30 giftcard as compensation for their time.

Materials

An initial pilot study utilized an online questionnaire to explore issues around the experiences of those who identify as ASD and LGBTQ. Responses (n = 10) were used to inform the development of questions for the focus group. The authors decided to conduct a focus group over individual interviews because we believed the topics being examined might benefit from group dynamics where participants could spur further conversations and ideas between each other, using their own vocabulary. It was felt that the feedback effect inherent in a group discussion might help participants to explore and reflect on quite complex, intertwined, and sensitive issues that might be more challenging in a one-on-one interview situation. We also considered that participants may be more willing to discuss very personal topics in the context of a group rather than an one-on-one situation, where they could provide each other with mutual support in sharing experiences associated with their minority identities (Kitzinger, 1995).

The focus group included five questions (see Appendix), took around 90 minutes and was audiotaped. The focus group took place at the private practice the participants attended for counseling. Three researchers were present (AH, NG, and EM). AH (who received training in qualitative methods in graduate school) led the focus group with NG (an undergraduate student working with AH) and EM (the participants’ counselor) occasionally interjecting with follow-up questions or comments. NG identified as being on the autism spectrum, no other researchers share diagnosis, sexual orientation or gender identities with the participants.

Data analysis

The verbatim transcription was analyzed using a thematic analysis approach as a realist method to report experiences, meanings and the reality of participants, and find repeated patterns of meaning (Braun & Clarke, 2006). The transcription was repeatedly reviewed by four coders to achieve immersion and obtain a sense of the whole (Tesch, 1990). Next specific words, sentences, and portions of the text were highlighted that appeared to capture key concepts and thoughts (Hsieh & Shannon, 2005; Morgan, 1993). These were defined as statements that stood out as particularly poignant and relevant to the research questions. The analysis was thus conducted at a semantic or explicit level based on participants’ actual statements, rather than a latent or interpretive level. Using an open coding process, coders made notes on their impressions and initial analysis. Labels for codes were identified using a data driven, inductive approach and were then sorted into categories or themes (“nodes”). Themes were checked for variability and consistency and those with only a small number of comments, or which participants spent minimal time discussing, were either removed or collapsed in to other themes, resulting in four final higher-level themes. Subsequently the entire transcription was coded using NVivo 12 software (QSR International, 2018).

Written informed consent was obtained from all participants. All aspects of the study were performed in accordance with the Institutional Review Board at the University of Massachusetts Lowell, Massachusetts.

Results

Four main themes emerged from the focus group: Effects of Dual Identities; Multiple Minority Stressors; Isolation; and Lack of Service Provision.

Theme 1: Effects of dual identities

Intersectionality emerged as a continuous thread throughout the focus group discussion. Many issues described by the participants arose because of the interplay between the dual identities they endorsed. Theme one was formulated through comments made around experiencing dual identities, autism spectrum and LGBTQ+. Comments where participants mentioned the interrelationship between ASD, sexual orientation and gender identity were coded to this node. This resulted in 36 references coded to this theme (55% of all coded references), spread fairly evenly across participants. For the participants, being on the autism spectrum did not appear to be an issue in terms of understanding their gender identity or their sexual orientation. They saw these as separate identities. Participants spent considerable time discussing how they had come to understand their sexual orientation and gender identity. One participant commented that while ASD had not effected their understanding of their gender identity, it may have affected their gender identity itself:

I feel like having autism spectrum disorder hasn’t affected my understanding of my gender identity as much as my gender identity itself. I feel like having ASD sort of separated me from a connection from my body in some way and I feel like I am stuck more in my mind, and so I think that affected my gender identity. [Participant 3].

The participants noted that a significant challenge was not having the vocabulary for how they identified. This may be in part due to a lack of opportunities to explore gender identity and sexual orientation. One participant mentioned how they did not realize there was a label for how they felt until they went to college and met others who identified similarly:

I didn’t have the labels for what I was until later. It wasn’t until I met other people who were like me and said “that is my experience”. A lot of dubious thoughts about things but not necessarily as concrete until later. [Participant 2].

They also described how not having the labels for how they felt was damaging to their self-esteem:

I am glad that I now have these identifiers since I didn’t have a lot of the terminology and I couldn’t identify things for a long time. It really messed me up inside, but having feeling like I have found who I am has helped me sort of feel better about myself, but it’s frustrating that I now feel like me, but everyone else wants me to change. [Participant 3].

Participants described others, including peers in the LGBTQ + community, having stereotypical views of autism which they did not necessarily fit, and being unaware of the diversity within the autism spectrum. Not presenting with features of “classic” autism caused confusion, or others questioning their ASD diagnosis. This perplexity seemed to be amplified by their LGBTQ + identity. They reported feeling “othered,” discredited, tolerated rather than accepted, pressure to conform to “normal” behavior, always being in “education mode,” and being treated as “inspiration porn” as a high functioning individual on the autism spectrum.

Inaccurate perceptions of the autism spectrum contributed to isolation and rejection particularly from others in the LGBTQ + community. The participants found that they did not really fit in to either group, and thus felt increased isolation (which also relates to Theme 4):

So being part of both communities makes it difficult because if you are just part of one community, it’s easier to find a group of people who identify the same way and understand you, but if you have multiple identities, then it’s very difficult to find people who understand and accept you. [Participant 3].

Theme two: Multiple minority stressors

Theme two was formulated from comments about the challenges experienced by the participants, the impact of discrimination/misunderstanding, and holding minority statuses, resulting in 20 references (30%), three from participant 2, five from participants 1 and 3, and seven comments from participant 4. Participants described many instances indicative of a lack of understanding of either ASD, non-binary gender identity, and/or sexuality. They discussed how having ASD and identifying as LGBTQ + evoked negative reactions from others, and how others had difficulty accepting their identities. Professionals and family members frequently believed the individual was confused about their gender and sexual identities because they had ASD, thus discrediting the individual and invalidating what they said. For example:

For a couple of people that I have gone back to that knew I was LGBTQ were like “oh you are autistic” so they just dismissed the previous statements of what I said; you just don’t know or you just think that way because you have something going on with your brain. People assume when you are autistic you don’t know yourself, but even people I know with intense symptoms, know themselves. [Participant 1].

I feel like people aren’t really knowledgeable about it because they just seem to want to put you into separate categories, so when there is intersection people get really confused or they will be like “you are that ___ because you are this ____”. No, you are missing the point and it happens to be these two things. So it’s actually been really frustrating for me because when I have tried to explain to people who are like “are you ace1 because of ASD? [Participant 2].

Participant 2 comes back to this theme later in the focus group:

If I happen to mention being both non-binary and ace and being autistic, people take me less seriously because they are like ‘oh if you are autistic, then you don’t know as much’. It’s just very degrading sometimes.

They also reported very overt prejudice:

Given that I am something of a highly visible walking signifier of divergence of the cultural norm in some ways, it’s been a good day if I’ve only been screamed at once. [Participant 4].

Participants also experienced stress around their parents’ reactions to their gender identity and/or sexuality and this was a prominent line of discussion in the focus group. Mothers tended to be more supportive than fathers, and parents became more supportive over time. Parents also seemed to accept certain factors but not others, and this was variable. For example, one participant described their parents accepting their gender identity until they began cross-sex hormone therapy, which they were not comfortable with. Another participant commented:

For me my parents are very cool about the ace thing, but I haven’t quite gone on the gender front. [Participant 2].

Participant 2’s gender identity is agender/nonbinary. In this quote they are referring to their parents accepting their asexual orientation but they haven’t yet spoken with their parents about their gender identity.

Theme three: Isolation

Comments where participants reported feeling isolated, being rejected by others, difficulty forming friendships, and/or making connections were coded to this theme, resulting in five references (8%), two from participants one and two, and one comment from participant three. On the more serious end of this theme participants discussed feeling shamed by others and feeling they had to act a certain way so people don’t hurt them or treat them differently. They also discussed strategies to manage social situations such as not mentioning their ASD diagnosis, their gender identity, and/or their sexual orientation. One participant discussed being able to “pass” when necessary and made this statement:

My gender is something that I wouldn’t want to change because that is something that is much easier to hide if I need to, if I am in a very unwelcoming space, I can just be like, yeah call me she. [Participant 2].

Other comments coded to this theme focused on how some of the participants craved more social interaction with others but despite this, had few if any friendships. Social skills challenges and social isolation are common among those with ASD, and participants in the study reflected this:

I think because of the autism I am not good at making connections with people. I am not good at making friends. I have currently two friends, one of which lives in Texas. And so that is difficult for me because I do crave social interaction. If I could choose not to be autistic I probably would, also same with my sexuality. [Participant 1].

So the one thing if I was in an ideal world where everyone was accepting of all my identities, I probably would change my difficulty making friends just because I had friends in high school and I really liked it and I would like to have friends again but it’s really difficult. [Participant 3].

Theme four: Lack of service provision

Statements around service provision, difficulty finding services and/or identifying health professionals (physical and mental health) who understood how to work with and support someone on the autism spectrum who identifies as LGBTQ + were coded to this category. This resulted in five references (8%), two comments from participant 1, and one comment from the other participants. Based on the focus group discussion appropriate service provision seemed almost nonexistent. Participants reported that many professionals were at a loss for how to support them, or simply lacked knowledge, particularly around gender identity. For example, one participant recounted how they were told by medical professionals that they were not presenting as “feminine enough.” Another went through six therapists before finding one who understood their identities. Being referred on and a lack of communication between referral sources, led to delays and frustration:

That combination [ASD & LGBTQ] actually delayed things in my life, almost half a year. Just getting handed from one person to the next to the next, not having the continuity for letter writing purposes with the whole gatekeeping process, and it very much felt it was the combination of the two, if I just had one or the other I wouldn’t have had that level of discrimination. [Participant 4].

I always feel so disappointed when I am going to a medical caregiver and they say something that is just so ignorant. Being disappointed by doctors and other care professionals has been awful. And it’s rare to find somebody who will admit when they don’t know something. [Participant 1].

Other negative experiences included being asked personal, invasive questions unnecessarily, being misgendered, speaking to their parent without them present, and doctors using outdated terminology.

While the analysis focused on these four most prominent themes, participants made many other insightful and poignant remarks. One participant, for example, commented on how strict religious views in their family made it more difficult to discuss their dual identities with their parents. Another described their parents asking them to move out. Participants also talked about how their own recognition and acceptance of their dual identities was a process which unfolded over a number of years and was experienced as disjointed and asynchronous, partly because of the pressure they felt to fit in to one category. They described how society was becoming more accepting of the LGBQ + community, but had not yet caught up with issues around gender identity or disability.

Participants also mentioned positive aspects of dual identities, namely having additional groups to identify with. They discussed connecting to multiple communities, and there being a larger group of people with whom they shared identities. For some this led to additional connections and meeting others who understood them, sometimes forming quite close and supportive relationships. They commented on having a “much higher working level of consent for different topics” and that it was “lovely to not have to always have to be in education mode.”

Discussion

As the field looks to broaden counseling and other service provision for those on the autism spectrum reaching adulthood, further understanding of how to support sexuality and gender identity development is critical. While there is greater awareness of sexuality and gender diversity among adults with ASD, many counselors and service providers remain at a loss regarding appropriate advice, guidance, and interventions. This study aimed to address that gap by examining first-hand experiences of those on the autism spectrum, who identify as LGBTQ+, particularly challenges stemming from these dual identities. Participants described bias towards them as identifying as LGBTQ + and disabled as being cumulative and eroded their credibility as autonomous individuals. This intersectionality cut across the themes identified and emerged as a significant barrier in many contexts. These findings reframe current thought around experiences of adults on the autism spectrum where different identities are considered in layers rather than as overlapping and intertwined. Relatedly, Miller (2018) proposed five intersectional identities among students with disabilities who identified as LGBTQ: intersectional, interactive, overlapping, parallel, and/or oppositional. Recognizing this complexity may be important for understanding and dealing with the psychological and physical health needs adults on the autism spectrum who identify as LGBTQ + and/or gender diverse may present with, and has so far been largely ignored.

The participants collectively rejected a common proposition that those on the autism spectrum may be confused about their sexual orientation and/or gender identity (research question 1). Those around them, including their parents, often rejected their non-binary gender identity or minority sexual orientation status, or questioned their ability to really know who they are and what they want. Kuvalanka, Mahan, McGuire, and Hoffman (2018) interviewed three mothers of children with ASD who were transgender and gender diverse who also wondered to what extent their child’s ASD confused, or even caused, their gender variance. These findings highlight the need for more support and resources for parents who may be unsure how to address issues of gender identity with their autistic children (Pryde & Jahoda, 2018), or may not be knowledgeable themselves. This resonates with other areas of disability studies where adults are treated as child-like, assumed to lack sexual desire, or are prevented from exploring their own sexuality (Hannah & Stagg, 2016; van Schalkwyk et al., 2015). From the clinicians’ perspective it may seem appropriate to extend the diagnostic phase when working with patients with gender dysphoria and ASD (van der Miesen et al., 2016; Strang et al., 2018), whilst acknowledging and validating the individuals’ various identities. Clearly, an individualized approach is essential. While participants rejected a causal connection between ASD and gender variance or sexual orientation, they lamented on their unfamiliarity regarding different identities and labels. Prior to attending college they lacked the necessary vocabulary to understand who they were resulting in significant stress and damaged self-esteem. This supports prior work which has identified inadequate sex education, and education based on heteronormative and cisnormative perspectives, as a critical area for interventionists to address (Barnett & Maticka-Tyndale, 2015; Byers, Nichols, Voyer, & Reilly, 2013; MacKenzie, 2018).

Participants described others lack of awareness or knowledge towards autism, non-heterosexual orientations, and non-binary gender identities (research question 2). This resulted in significant isolation, and is consistent with previous research on adult outcomes (Cheak-Zamora, Teti, & Maurer-Batjer, 2018; Orsmond, Shattuck, Cooper, Sterzing, & Anderson, 2013). Holding multiple minority identities magnified social challenges and resulted in greater isolation. Relatedly, as participants discussed advantages/challenges stemming from membership in the autism and LGBTQ + communities (research question 3), they described rejection from the LGBTQ + community because of traits associated with their autism, and from the autism community because of their sexuality and/or gender identity. This point is similar to that made by Strang et al. (2018) who suggested youth with ASD and gender dysphoria struggled to fit in with ASD treatment groups or with transgender support groups. Whilst young people turn to social media to find community (Miller, 2017), having access to more in-person community based support groups as well, would be an important next step for counselors to consider.

In the context of broadening current approaches in counseling, understanding and embracing intersectionality as a framework is again critical. When working with clients it is important to consider their current needs and challenges beyond simply their autism diagnosis. Only considering their challenges through the lens of autism, somehow separate from their other identities, results in unhelpful and even harmful approaches. Participants described widespread ignorance resulting in significant barriers to needed psychological and physical health care. This echoes other findings of those holding minority statuses (Mattingly, 2018), and issues with the health care system for those on the autism spectrum (Hillier, Galizzi, & Ferrante, 2017), which are emblematic of the need for improved education and training. As prevalence of autism among adults rises, addressing the increasing diversity of this population will become an important priority for mental health providers.

This study had a number of limitations, principally the small sample size. Typically, a focus group would be conducted with at least five participants. When fewer participants arrived for the group than anticipated, the authors considered conducting a second focus group. However, following review of the transcription it was felt that the data was rich enough to go ahead with the analysis after just the single focus group. However, future work should include a larger, ethnically diverse sample to follow-up on the initial themes suggested here, and allow for generalization including examining experiences of those outside the U.S. In particular, a larger sample may afford a deeper exploration of intersectionality including consideration of gender, race and class which could further delineate future counseling approaches. A sample size which is large enough to allow differential consideration of those who are gender diverse and/or LGBTQ + would also be beneficial given the different needs and experiences of each group. A further limitation includes that all researchers identified as cisgender (for further information see Veale, 2017 and Galupo, 2017).

Despite these weaknesses, the preliminary findings did identify key target areas for future research and service provision, and are notable in giving voice to adults on the autism spectrum. These experiences are far more nuanced than current conceptions, and the thematic pattern which emerged contributes to the current limited understanding of intersectionality and the impact of occupying multiple socially devalued roles. Practical implications which emerged from the findings included (1) the importance of parents, family members, teachers, and other professionals validating the various identities someone on the autism spectrum may hold without conflating these with their (dis)ability; (2) Exposure to information on gender diversity and LGBTQ + orientations preferably through the school system for those with autism themselves to ensure greater accessibility, and through ASD service providers for parents; (3) Community-based opportunities to meet others who identify similarly and can provide a support network where those with diverse identities are welcomed.

Improved understanding of the perspectives of health care and mental health providers, where they lack information and how to fill that gap, will also be an important direction for future research. Insight into parents’ perspectives of the disparities experienced by those on the autism spectrum might also be helpful in gaining a broader picture, particularly given how important parents are for buffering psychological distress and social anxiety for those with dual identities (van Beusekom, Bos, Overbeek, & Sandfort, 2015).

Appendix

Focus Group Questions

  1. Do you feel that having autism spectrum disorder affected your understanding of your gender identity and/or sexual orientation, and if so, how?

  2. How aware/knowledgeable do you think others are about those with autism spectrum disorder?

  3. How aware/knowledgeable do you think others are about those who are LGBTQ?

  4. How aware/knowledgeable do you think others are about those both with autism spectrum disorder and who are LGBTQ?

  5. Have you ever experienced any advantages/challenges because of being a member of both the autism and LGBTQ communities?

Note

1

The term “ace” refers to identifying as asexual

Acknowledgments

We would like to thank the participants for their time in taking part in this study.

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the University of Massachusetts Lowell’s Institutional Review Board and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.

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