This paper describes a qualitative case study [7, 26] of one queer identified, autistic individual’s experience with applied behavior analysis and the process of navigating identity development within the context of her multiple minority identities. The purpose of this study was to explore the experience of identity development and expression in a queer, autistic individual. Qualitative case study design was used, given its appropriateness to describe, explore and understand a present-day phenomenon in a real-world context [7, 52]. According to Merriam and Tisdell , a qualitative case study is “an intensive, holistic description and analysis of a single bounded unit” (p. 232). This paper draws on Stake’s conceptualization of a qualitative case study whereby a case is viewed as a “bounded system” (p. 2). Given our research purpose, we also utilized an instrumental case study design whereby the issue(s), more than the case, was of primary interest . In this project, the case (i.e., “Abigail”) played a supportive role and facilitated our understanding of queer, autistic identity development as influenced by ABA therapy.
Purposive sampling was used to locate a participant whose experiences were “information rich” as it related to the study purpose [26, p. 96]. The first author posted a brief description of the study and an invitation to potential participants in four online communities that were hosted through the Facebook platform. The invitation specified that the authors were recruiting an individual who identified as both autistic and queer and had received applied behavior analysis therapy in the past. Two of the communities served as networking and support sites for the queer community, while the other two served as support sites for autistic and neurodivergent individuals. The selected participant found the first author’s post in one of the autistic community pages and reached out via Facebook Messenger. All subsequent communication and scheduling of interviews took place over email.
Over a three-month period, data were collected via three semi-structured interviews that occurred via video conferencing (i.e., Zoom). Video conferencing was selected as a suitable option for interviews given the geographic distance between the participant and research team (they lived in different states), and the participant and interviewer mutually agreed upon video conferencing as a suitable way to meet for the interviews. Interviews averaged forty minutes in length, and we designed an interview guide to elicit information about identity expression and development over time, factors influencing identity development and expression, the intersection of the participant’s identities, and her experiences with ABA therapy. Extant literature on queer and autistic identity development, ABA, and multidimensional identity theory [13, 16, 33] informed our interview questions which included: How has your family shaped how you think about your disabled identity over time? Talk with me about conscious decisions you’ve made to embrace your disabled/ queer identity. How involved were you in the decision-making process in ABA therapy? The participant was given a pseudonym (i.e., Abigail), and identifying information was altered to preserve confidentiality.
In consultation with the Office of Research Integrity at the participating university, it was determined that research governance was not necessary, due to the small number of research participants (n = 1) in this study. However, the study purpose was explained in detail and verbal/ written consent obtained from our participant. The data presented here are from three interviews with the participant that occurred over a period of two months. While the three authors collaborated on all phases of the present study, the first author took the lead in participant recruitment and data collection.
The semi-structured interviews were digitally recorded and transcribed verbatim by the first author. The three members of the research team independently read through the transcripts and coded data segments having to do with the study purpose. Codes were developed inductively but were also informed by existing literature in ABA therapy and identity development [e.g., 14, 17, 45]. Patterns were independently identified by the research team, then compared, discussed, and agreed upon through regular meetings. During the entirety of data collection and analysis, an audit trail was kept on a shared drive to track our progress, engage with data reflectively, and record methodological decisions [8, 46]. The research team included individuals from social work and music therapy backgrounds. According to Barbour  colleagues from the same disciplines can “share the same blind spots” in terms of explicating and refining codes (p. 501); thus, investigator and interdisciplinary triangulation throughout all aspects of this study contributes to the rigor of our project . Additionally, the first and third authors have experience working as supported employment professionals in the field of intellectual and developmental disability, which has afforded them the opportunity to interact regularly with a variety of autistic individuals, many of whom are also queer and are either currently receiving or have received ABA therapy.
This participant, Abigail, is a 39 year-old gender fluid individual of Jewish descent. Abigail’s preferred pronouns are she/her. She is a college graduate with a degree in veterinary technology who works full time as a travelling veterinary technician. Abigail currently lives in a southeastern state with her husband and seven children, one of whom is her husband’s niece. Her husband stays home with the children while she works. Her husband does not identify as a member of the queer community, but according to Abigail, he is likely autistic, though undiagnosed. She has been in a relationship with her husband since college and has never been in a relationship with a queer individual. Abigail is estranged from her two brothers and her parents.
Four themes were identified concerning the experience of identity development and expression in this autistic, queer individual: naming, masking, connecting, & developing. We describe and discuss these themes below, providing illustrative quotes from our interviews with Abigail.
Naming was an important aspect of Abigail’s identity experiences and speaks to how the participant, and others, have described her identity. In childhood and adolescence, Abigail recalled hurtful, even traumatic, interactions with peers and family where she was bullied and called names by classmates. Although an awareness about her own sexual orientation did not solidify for Abigail until college, during middle school, peers had already labeled her as a lesbian.
Starting in 7th grade, I had a really good friend that, we were at this event, and I kept on going in and out of the bathroom to check on her because she was really upset. But they labeled me as a lesbian when I was 13, okay? That followed me until I graduated high school….I was considered an outcast.
After being mainstreamed in school (ie, being placed in a typical classroom as opposed to special education), Abigail “would get called the ‘r’ word a lot.” She went on to say this about hurtful peer relationships during adolescence:
The way I was treated at school - it was just awful, and it followed me to religious school and the only way I had any break from it was at Girl Scouts. It was really bad. And when I told my parents about it, they told me I was lying, and they wouldn’t do anything about it. So, I just had to suffer through this. They just didn’t believe. They didn’t want to go to the school and try to make people stop. I was either being bullied for [being a lesbian] or having a disability.
In childhood, Abigail was diagnosed as having Pervasive Developmental Delay (PDD) – NOS and ADHD and characterized as being “high functioning” (language she now rejects). Abigail’s autistic identity did not develop until receiving a diagnosis at age 30. Having the diagnosis helped her clarify and make sense of a lifetime of experiences that didn’t quite fit under the ADHD and PDD umbrella. For Abigail, getting the diagnosis “was a relief” and helped solidify a clearer sense of self. Rather than person first language, Abigail uses identity first language. At the time of our interviews, Abigail described her current disabled identity as an autistic, neurodivergent, and hard of hearing person. When describing her disabled identity, Abigail pointed out that she is not part of the “capital D” deaf community, meaning that she does not consider herself to be a part of the deaf community that uses sign language and the culture that comes with that. She has not passively taken on a disabled identity, but consciously identifies as a disabled person. For Abigail, like many disabled self-advocates, there is power in claiming the word disability. She is proud to be a member of the disabled community. Abigail also considers herself to be neurodivergent. When asked what this aspect of her identity means to her, she stated:
I would compare it to how different Windows and Macintosh is - how I would say neurotypicals run on Windows and…and neurodivergent people run on a MacOS. It’s just a different way of being and different way of processing things.
As a child, Abigail’s identity as a disabled person was minimized and stigmatized by her parents. As an adult however, Abigail draws strength and self-assurance from her autistic identity and dismisses people who attempt to reject this part of her. Although Abigail doesn’t typically disclose to healthcare professionals her autism diagnosis (because it’s not often relevant), she did tell a dermatologist who was treating her for skin issues connected to Polycystic Ovary Syndrome (PCOS). “PCOS is very common in the autistic community so I brought that up and the nurse asked me, ‘Well, you don’t look autistic.’ And, I said, ‘Well, what does autistic look like?’” Abigail went on to say, “The doctor came in like, ‘You can go now.’ [He] kicked the nurse out of the room.” While Abigail found this dismissal of her autistic identity to be frustrating, she did not allow this interaction to tarnish the sense of confidence that she feels from embracing this part of her identity.
Interestingly, as a high school student, Abigail worked at a camp with autistic kids and was told, “you connect really well with them.” Years later she remembered this camp experience and thought, “Well, that makes a lot of sense.” As suggested by MIM, it seems she unconsciously connected with an identity and that identity may have been there before she was consciously aware of it. As a camp counselor working with autistic kids, Abigail was getting her first exposure to autism and autistic identity.
A second theme related to identity development and expression for Abigail, a queer, autistic individual, involves masking. This phrase was used by Abigail in our interviews to describe instances when she would hide her autism or when others would intentionally deny or conceal her identity (either as a disabled or queer person). For Abigail, masking started early on, and impacts how she engages with others even today:
When I was a kid and I was around my parents I was like, “Okay, how I am isn’t good enough. I need to make sure I’m acting perfectly.” But when I was away from them, I had to slowly learn how to be myself again….I’m still working on it but there are times where I have to…’mask’ in front of people I don’t know. But when I’m at home, I’m completely myself. But when I’m out in the community I always have those thoughts.
When asked to say more about masking and what that looked like for her, Abigail said this:
Masking is when you…okay, the perfect example is when I was in high school. So, I would be with a group of people, and I would study them, and I would act like them so I wouldn’t stand out. It’s like acting in everyday life. Pretending to be someone you’re not.
From Abigail’s perspective, having to participate in ABA therapy per her parents’ mandate, influenced her perception of self as she viewed herself as less than, and flawed – “I was taught that the way you are isn’t right and we need to change you.” For instance, in therapy as a young child, Abigail got the message from both her therapist and parents, that how she learns (e.g., needing to get up and walk around) was “wrong.” Because Abigail received punishment (e.g., withheld food, physically confined to a desk) for behaviors that were deemed unacceptable by her parents (e.g., failing to complete tasks), she would pretend to be someone she wasn’t, mainly out of fear and desire to avoid mistreatment. But even after leaving home and starting a life independent of her parents, Abigail still questions her behavior and can sometimes feel uncertain with others:
“Is that wrong? Is that right? What if I made someone mad? Am I going to get punished for it?”....Whenever I feel like I’ve done something wrong I will apologize repeatedly until I’m told to stop because I’m afraid something’s going to happen. It’s definitely gotten better. My husband is definitely very…understanding [about] of a lot of things, but it was really hard… I couldn’t trust anybody because the people I was supposed to trust put me through this horrific thing.
Abigail’s parents initially hid the nature of her disability from her; Abigail only knew that she had a learning disability. Although Abigail was hard of hearing, her parents didn’t want her to learn to sign: “I actually was taught in secret at school by a friend who taught me the signs because I couldn’t communicate.” Likewise, when Abigail attempted to come out to her parents about her sexual identity, the conversation with her mom went like this: “’If hypothetically I was to tell you I was bi, what would you do?’… [my mom] said, ‘I wouldn’t want to know.’ So, I’m like, okay then, that’s that conversation. [I] never brought it up again.” According to Abigail, this masking of her queer identity by her parents contributed to her own self-denial of this part of her identity.
Overall, Abigail described her home life growing up as one characterized by a culture of denial and secrecy around the nature of her disability; her parents often dismissed her bullying experiences at school and avoided talking about anything deemed as inappropriate or improper for Abigail or her family, like her gender identity and sexual orientation.
One consequence of Abigail’s parents masking her diagnosis and true self (i.e., sexuality, disability), and the message received that she must pretend to be someone else, is that Abigail wasn’t able to connect with like-minded others until well into adulthood. After finally receiving an accurate diagnosis of autism at age 30, Abigail felt cheated. To her parents, Abigail said:
“You kept this information from me? I could have been connecting with other people”…. Growing up I always felt different, I just didn’t know why. I think all this time with me not knowing, that would have been gone. I would have been able to connect with other people and not feel so alone.
Although it took many years for Abigail to feel solidly at home in a community, themes of belonging and connection with others made up much of the content of our conversations about identity development and expression. Soon after receiving an autism diagnosis, Abigail went online and found communities to connect with. Groups that she initially found were autism “martyr [parent] groups” - i.e., parents who aim to cure their child of autism or want to make their child appear more normal. Abigail had a friend “rescue” her from these groups and she quickly connected to autism self-advocates. She began developing an active online presence, critiquing abuse and pseudoscientific “treatments” for autism and cure culture in general. In fact, Abigail is quite well known in these circles because of her advocacy work, which has at times involved speaking out in public platforms: “Now in the autistic community, they say my name and they know who I am.” This is in sharp contrast to Abigail’s treatment in her youth when she was mistreated and silenced by her parents. Although she initially felt like, “no one is going to care what I have to say,” she has since found her voice and become empowered to use that voice to help spare other autistic individuals from the mistreatment and isolation she endured as a child.
The acceptance and sense of belonging that Abigail experiences through online communities is in stark contrast to how she related to her parents: “I was always seeking their approval but whatever I did was just never good enough. Like I felt rejected. I felt like I didn’t belong anywhere. I felt like a lost child.” Yet about her online associations with other autistic people and parents of autistic children, Abigail said: “Connecting with these people all over the word and just connecting with other autistic people gives a stronger sense of identity and it’s really…good for your mental health.”
In college, as Abigail was just starting to explore her queer identity, she experienced newfound freedom to build relationships with lots of different kinds of people. When talking about going to a drag bar in college, Abigail said this - “I just felt like I fit in…” and compared it to her experience in childhood and adolescence: “I felt safe. I’ve never felt safe before.” And while Abigail currently identifies as queer, she has not formally joined an online queer community and she doesn’t feel the need to do so because the autistic community is so welcoming and inclusive. She also spoke of the closely intertwined nature of the queer and autistic communities- “Because I was around people who were more accepting and then I found out that the autistic community was like 70% LGBT and I was like, wow, well that makes sense.”
Connection and belonging were prominent themes as Abigail discussed her attitude towards child rearing and the culture of her own family (i.e., partner and children). All of Abigail’s children are neurodiverse and she suspects her husband is on the autism spectrum as well. About her husband, Abigail said – “He is just the most accepting person that I will ever meet.” Because all of Abigail’s family members (i.e., partner and children) relate to each other so well, she never feels the need to mask at home.
Based on our three interviews with Abigail, a queer, autistic individual who participated in ABA therapy as a child, naming, masking, and connecting are central ideas that characterize her experience of identity development and expression. Additionally, developing is a fourth theme that we deemed relevant based on our analysis. For Abigail, some aspects of her identity are solid and well-defined, while other parts of her sense of self are still evolving.
With respect to her sexual orientation and gender identity, Abigail is still exploring what feels right to her. And while clearly identifying as queer, Abigail vacillates between classifying herself as nonbinary and gender non-conforming. She also goes back and forth between bisexual and pansexual. Interestingly, Abigail states that her sense of queer identity really has not changed much since she first began to explore that part of herself in college. However, part of the reason that Abigail still has not solidified her gender and sexuality identity may be because of the way their parents shut down any of these ideas during her adolescence and young adulthood. Any talk of non-normative sexual or gender identity was immediately suppressed which prevented and delayed the exploration of this part of her identity. Although called a lesbian by peers at school, Abigail recalls not even being sure what the term meant:
Honestly, back then I didn’t even know what a lesbian was. I had to ask my parents what it was because I had no clue. I was sheltered. I had no idea…I do remember seeing this news clip….there was a lesbian wedding on and I’m like, “that’s cool” and they quickly shut the TV off. [They said] “No, no, you can’t marry a girl, only a boy!” I’m like, “okay...”
Abigail never dated any queer person, partly because her mother wouldn’t let her; she was told that she needed to date a Jewish boy. Abigail admits, “…it took me a little bit longer to accept the LGBT [identity] because of everything that’s been pounded into my head from when I was a kid.”
Leaving home and gaining some independence from her parents while in college created a space for Abigail to begin exploring these aspects of her identity. Talking about when she started to wonder about her queer identity, Abigail shared: “When I left home, and I started making friends who come from different walks of life. That’s when I started to wonder - after I left home.” Abigail met her now-husband at age 19, while they were living in the same college dorm. The two started dating and soon married, all while Abigail was still making sense of her own gender and sexual identity. When asked about disclosing her queer identity to her husband, Abigail said: “It actually didn’t happen for several years because that’s when I was trying to figure things out on my own…I was in self-discovery while I was married.” Although Abigail had never dated a queer person, she has no regrets: “I chose [the person] I wanted to. But then, due to outside forces, I was in self-denial for such a long time.” According to Abigail, exploring and coming to terms with her queer identity made it much easier for her to discover and understand her autistic identity. She explained that the two communities are closely linked and being a part of the autistic ones create freedom to explore and expand her queer identity.
In closing, outside of being queer, some aspects of Abigail’s gender and sexual identity, “[she is] still trying to figure…out.” Certainly though, detaching from her family of origin and finding safety in community have helped Abigail feel safe to explore various aspects of her self-identity.