The Education Experiences of Autistic Women and Nonbinary People: An Interpretive Phenomenological Analysis
CITATION: Goble, F. (2022), ‘The Education Experiences of Autistic Women and Nonbinary People: An Interpretive Phenomenological Analysis’, Journal of Social Science Student Research, Volume 1, Issue 1, DOI: 10.20933/30000102
Abstract: Research concerning the experiences of autistic women and nonbinary people has been identified as a gap in the literature of autism studies, despite growing evidence suggesting that these groups may have unique experiences compared to autistic men, particularly in the domain of education. This article attempts to address this gap in the literature of autism research by elucidating the education experiences of autistic women and nonbinary people. To address this research aim, a methodology of interpretive phenomenological analysis was adopted, and interviews were conducted with autistic female and nonbinary participants concerning their experiences throughout education. From these participants’ experiences, broad themes of discussion emerged, concerning the challenges and triumphs participants experienced in education. These findings are discussed within the context of existing literature concerning both autism in education and the experiences of autistic people of marginalized genders.
Key words: Autism, education, women, nonbinary people
Background
Autism is a developmental disorder characterised by difficulties in social interaction and restricted or repetitive patterns of behaviour (Kirkovski et al, 2013). While it has long been thought to affect males primarily (Cazalis, 2017), emerging research suggests that autistic women may be overlooked and underdiagnosed (Yaull-Smith, 2008; Whitlock et al, 2020). This may be due to clinical ascertainment bias (Lai et al, 2015), the use of diagnostic tools that are based on male symptomology (Whitlock et al, 2020), or stereotypes portraying autism as a male condition (Geelhand et al, 2019). Research on the experiences of autistic women is distinguished by accounts of mistreatment by others and feelings of isolation (Beteta, 2008; Cridland et al, 2014). Autistic women report a high instance of co-occuring mental health issues and difficulties receiving support and understanding in education and other social settings (Baldwin and Costley, 2016).
In addition, despite data suggesting that autistic people may be more likely to identify as a gender outside of the binary of ‘male’ and ‘female’ (Dewinter et al, 2017; Walsh et al, 2018), there is limited research on the experiences of autistic nonbinary people (Strang et al, 2020). Oswalt and Lederer (2017) point out that individuals who possess two marginalised identities – such as autism and gender variance – are likely to experience multiple forms of stigma. For instance, autistic young people who experience gender dysphoria may feel misunderstood at both autism treatment groups and transgender support groups due to the uniqueness of their identity (Strang et al, 2018). Furthermore, individuals who both have a disability and are LGBT are at a higher risk of negative school experiences and low educational attainment than their heterosexual or cisgender counterparts (Bennett and Goodall, 2016; Oswalt and Lederer, 2017).
Existing research suggests that regardless of gender, autistic people face many challenges that may prevent them from thriving in formal education (Humphrey and Lewis, 2008; Sproston and Sedgewick, 2017). Teachers may lack understanding of autism (Church et al, 2010), leading them to struggle to include autistic students in the classroom (Humphrey and Symes, 2013) and sensory difficulties arising from the business of school can overwhelm autistic pupils (Sproston and Sedgewick, 2017). To address these challenges, autism researchers have recommended that educators develop their awareness of autism and their ability to support autistic students (Ward and Webster, 2018).
Since autistic women and nonbinary people have multiple identities which place them at an increased risk of prejudice, their experiences in education are likely to be qualitatively different than those of autistic men (Hillier et al, 2020). Despite this, little literature exists that explores the education experiences of autistic people specifically from the perspective of women and nonbinary people. In fact, Moore at al (2022) argue that historically, autism research has been viewed through a masculine lens, a concept popularised by Baron-Cohen’s theory of autism because of an ‘extreme male brain’ (Baron-Cohen, 2002). Sproston and Sedgewick (2017) conducted research on the perspectives of autistic female students who had been excluded from school, but their study focused on a subsection of autistic girls who exhibited behavioural issues. Furthermore, as previously highlighted, research on any aspect of the experiences of autistic nonbinary people is currently limited (Cain and Velasco, 2021). The research conducted in this paper aims to address these gaps in the literature.
This research takes an intersectional approach, based on the understanding that the multiple, marginalised identities of autistic women and nonbinary people should be explored in conjunction with, and considering, each other (Ferlatte et al, 2018). It should be noted that women and nonbinary people should not be considered a homogenous group. Although both groups may experience similar challenges based on their diagnosis, there may be experiences that are unique to autistic women, or autistic nonbinary people. Indeed, there are also experiences that will be shared by both autistic people of marginalised genders and by autistic men. Nevertheless, I argue that it is important to conduct research that focuses on the perspectives of autistic women and nonbinary people exclusively, both to challenge the notion that autism solely affects men and to represent genders that have previously been excluded from autism research (Caisco et al, 2021). As such, in this article I have consulted with autistic women and nonbinary people directly to elucidate their experiences in education. As a result of this, I have aimed to uncover the educational challenges and triumphs experienced by autistic women and nonbinary people in this paper.
Throughout, this paper, will use identity-first language (i.e., autistic person), rather than person-first language (i.e., person with autism), as this is the language preferred by most autistic people (Kenny et al, 2016).
Research design
Methodology
Many autistic adults report that their behaviour and intentions have been misinterpreted by neurotypical individuals around them (Macleod et al, 2014). Howard et al (2019) argue that this issue may be worsened when neurotypical researchers and autistic participants interact without acknowledging their potentially differing interpretations of the world. Howard et al (2019) suggest that the research methodology that is best able to value and preserve the perspectives of autistic participants is Interpretive Phenomenological Analysis (Smith 2004), a qualitative research method which focuses on the individual, lived experiences of research participants (Smith, 2009).
IPA attempts to address the potential for miscommunication that occurs during data collection by adopting an inductive stance (Smith, 2004), asking open-ended questions based around broad topics to allow unexpected themes to emerge in discussion (Willig, 2013). IPA acknowledges the fact that the researcher’s own perspective is necessarily implicated in the research process due to the nature of interpretivism. Rather than attempting to eliminate the bias that occurs during interpretation, IPA requires that the researcher takes a reflexive stance, clearly delineating between participants’ direct accounts and the themes that emerge because of the researcher’s interpretation of these (Willig, 2013). In practice IPA research combines ways of interpreting data, providing both accounts of experiences that are heavily based around the own words of participants, and the researcher’s own critical analysis (Smith and Eatough, 2016). This analysis may be achieved through identifying and categorising themes that emerge throughout the data, to engage in a form of a second-order sense-making (Willig, 2013).
Such a methodology is suitable for autism research because it is based on the understanding that research participants are experts on their own worlds (Howard et al, 2019). As such, it is the methodology I have adopted in this research.
Researcher Positionality
Since IPA always involves a process of second-order sense making, this implies that participants’ experiences are interpreted by the researcher, who necessarily bring their own identity, assumptions, and biases to the interpretation (Heselton et al, 2012). Although I have taken steps to delineate the words of my participants from my own interpretation, it is important to note that my analysis is only one possible interpretation of their experiences. Milton (2014) argues that a power imbalance can occur when non-autistic researchers and autistic participants interact, which is heightened when researchers view autism as a ‘pathological deviance’ from societal norms (Milton, 2012, p883). I disagree with this conception of autism, and on a personal level, felt that I could relate to my participants to an extent as a young woman who is currently pursuing her own adulthood diagnosis for dyspraxia. However, it is also essential to note that I am not autistic, and therefore should not be viewed as an expert on autistic experiences (Milton, 2014). Thus, through the use of IPA within this research, I hope to have centred the direct accounts of my participants at the forefront of this paper.
Participants
Participants were recruited from a Scottish university and through the Reddit forum “r/AskAutism”. For both forms of recruitment, I posted an advertisement seeking autistic women and nonbinary people to meet with me for an interview discussing their experiences in education, for the purposes of an academic paper.
Five participants were recruited for this research. All participants were aged between 24 and 30 years old; two were British, two came from the United States of America, and one was German. Two participants had completed further education, while three were current students. Three participants had been educated in state schools in their countries, one had attended a private school, and one had been intermittently home-schooled. The fact that participants came from a wide variety of educational backgrounds suited the idiographic nature of IPA. This is because this research functions in two ways: firstly, by providing an overview of common educational experiences of women and nonbinary people, and secondly, by offering an insight into the perspectives of individual participants (Smith, 2004). I approached participants as individuals with unique experiences rather than as a group that represent an entire specific demographic.
Data Collection
The form of data-collection adopted was semi-structured interviews. This method was selected as it allowed me to ask the participants open-ended questions, which offered them the chance to guide the conversation and select the topics they most wished to discuss (Smith and Eatough, 2016). I provided participants with a copy of the interview schedule ahead of our meeting, so that they could contemplate their responses in advance. Macleod, Lewis, and Robertson (2014) note that anxieties about unanticipated situations and questions may be a barrier to autistic people participating in research, so I sought to mitigate this by doing so.
Interviews were conducted remotely over Microsoft Teams. This allowed me to speak to participants in real-time, enabling me to build rapport with them which was more conducive to open dialogue. All interviews were recorded for the purposes of transcription, and subsequently deleted. All data collected was pseudonymised. Ethical considerations were at the forefront of my research design. All data gathered has been treated as confidential as per the University’s ethics procedure for non-clinical research. I received ethical approval for this research project from the University of Dundee School of Education and Social Work Ethics Board, certification of which can be viewed in Appendix 2
Data Analysis
Data analysis began with a close-reading and labelling of interview transcripts, during which I began to identify emerging themes throughout my participants’ accounts (Smith and Eatough, 2016), which I then organised into clusters (Smith and Eatough, 2016). Two superordinate themes emerged through this analysis, which I have labelled ‘challenges’ and ‘triumphs’ in education. The analysis of findings found below follows IPA guidelines, demonstrating different ways of interpreting data (Smith et al, 2009). I have begun with a close reading and description of each participant’s experiences, before moving on to my own interpretation of their account. To demonstrate that my own interpretation of their accounts is a form of second-order sense-making (Willig, 2013), I have used first-person language to demarcate my analysis.
There were many shared experiences across participants, but I have also included perceptions that are unique to individual participants, as this research is not concerned with generalising but rather in drawing out the nuances of each participant’s accounts (Smith, 2004). This approach is in alignment with recommendations from the autism community, which has historically highlighted the variability of experiences between autistic individuals (Shmulsky and Gobbo, 2019).
Findings and Discussion
Theme 1: Challenges in Education
Neglect and Ignorance
The first experience identified through my analysis of participant interviews was one of feeling neglected and misunderstood. Logan and Frankie reported that their education settings were unable to support them, due to a lack of understanding on the part of the educators, or outright unwillingness and hostility:
One teacher got very angry when I gave him a letter from the disabilities centre saying that with being autistic and anxiety that I might need to take breaks, like she [the teacher] got pissed [angry]. She had it out for me with that class. (Logan)
My school basically just ignored my autism. My mom informed the school, and they did nothing. (Frankie)
Logan and Darian explained that teachers failed to pick up on their autistic symptoms, or dismissed these concerns based on their academic success or good behaviour:
I wasn’t like disruptive, and I didn’t bother anyone. I was very quiet. I just got bullied so. None of the teachers really picked up on it either. (Darian)
They would just be like there’s no point in testing or Logan is top of the class whatever, who cares. (Logan)
Alex reported that educators also displayed a lack of understanding for the ways their autism affected them and caused them to behave, which sometimes exacerbated their distress:
Every few days I’d have a meltdown due to social anxiety. I just run around the school and hide somewhere, and people would like try and chase me and find me which made it worse ’cause you don’t want to be around anyone with that happens (Alex)
These excerpts reflect the findings of previous research, which suggest that educators may have little understanding of how to support autistic children in mainstream facilities (Church et al, 2000; Sciutto et al, 2012). Church et al, (2000) and Sciutto et al (2012) used mixed-gender samples in their research, suggesting that lack of understanding of autism from educators is not an issue exclusive to autistic women and nonbinary people. However, the finding in the current study that some participants’ good behaviour or academic success caused teachers to overlook their autistic symptoms suggests that educators may operate with a narrow view of autism. Bargiela et al (2016) argue that autistic students who are undisruptive in class may be overlooked by teachers who base their understanding of autism on fictional ‘Rainman’ stereotypes. I propose that the struggles of my participants may have been overlooked for similar reasons: when confronted with outward signs of success – which were incongruent with a stereotypical view of autism (Treweek et al, 2019) – some educators failed to recognise the difficulties the participants faced. This lack of recognition may lead to some autistic students being neglected in the classroom (Bargiela et al, 2016; Whitlock et al, 2020).
A further challenge that arose from a lack of awareness of autism was educators responding inappropriately to the participants’ behaviour. Sciutto et al (2012) argue that outcomes for autistic children are negatively impacted when educators choose to focus on preventing an unwanted behaviour rather than empathising with a child’s inner experiences. Although experiencing a lack of understanding from educators is not a challenge exclusive to autistic women and nonbinary people, it is nevertheless important that educators familiarise themselves with the coping strategies and behaviour of autistic students so that they can effectively support them.
Conflict with Expectations
Discussion with Alex, Charlie and Frankie allowed me to identify the next challenge experienced by participants, with all three suggesting that they had difficulties adapting to the rigid expectations of their academic environments. I sensed that all three participants believed that their education institutes were unfairly inflexible, suggesting that teachers were unable to understand that the tasks that they assigned were biased towards neurotypical students. With a plea that they should be allowed ‘a little bit of individuality, thank you very much!’ Charlie provided a clear encapsulation of their experience of feeling in conflict with rigid educational standards.
For Alex, the challenge seemed to stem both from the difficulty they had in approaching the task from an academic perspective, and in the unsympathetic reaction of their teacher:
The teacher would get angry ’cause it seemed like I was writing something irrelevant, or that my essay had taken far too long, but I was actually trying my best to do what she wanted, but I actually couldn’t do the task because of the way I think. A lot of the tasks there…people don’t realise how they are designed for neurotypical people. (Alex)
Charlie expressed annoyance at the inflexible standards of some educators:
Teachers who put way more emphasis on form versus content in the paper, I cannot stand teachers who are that curmudgeonly. Seriously, it’s the content that counts. (Charlie)
Frankie, similarly, recounted that their school environment promoted a ‘one-size-fits-all’ approach to studying that they found difficult to adapt to:
They sort of really emphasised one particular study method and I didn’t generally gel well with it and so I don’t think I did quite well in any of my exams that I could have done if I had studied in different ways. (Frankie)
These participants suggested that the work they were assigned was often unsuitable for their thinking style, and that educators were sometimes inflexible in their academic standards. Kunce (2003) argues that some autistic traits are often poorly matched to traditional education settings, and yet most autistic students are placed in mainstream schools where teachers have little training on how to meet the needs of autistic children (Church et al, 2000). Furthermore, some autistic people may have atypical information processing abilities (Demopoulos et al, 2015) causing them to struggle in traditional academic environments (Ciccantelli, 2011). The current study aligned with these findings, with participants reporting that their preferred ways of learning were not supported by educators, causing them difficulties. While the supporting literature concerns autistic students of all genders, this challenge may still be particularly pertinent to autistic women and nonbinary people as they are more likely to experience co-occurring anxiety disorders (Albano and Krain, 2006; McLean et al, 2011) and thus may find academic pressures particularly difficult to handle.
Theme 2: Triumphs in Education
Understanding and Respect
Four participants reflected that their experiences in education were most favourable when they were treated with understanding and respect. From my analysis it emerged that participants experienced education most positively when teachers were willing to act flexibly, when they demonstrated an understanding of neurodivergence, and when they showed respect for autistic students as individuals.
Although Darian did not mention that their teachers were aware of their autism explicitly, they implied that they understood ‘something was going on’ and that they employed techniques to support them:
I think when I was like a teenager and in secondary school, some things were a bit better. Maybe also because we had a lot of younger teachers that were a bit more with the times, so to say, they had a bit more modern ideas. So, while they didn’t diagnose me either, they definitely had an idea of what could be going on and just how to help me. (Darian)
Charlie echoed the idea that educators who were willing to try something new to support them were remembered favourably:
I would definitely say like my educational consultant understood because she used to work with them, like gifted kids. And so certainly she would have run into stuff like this. She was very flexible. (Charlie)
Alex, Darian and Charlie drew comparisons between experiences in school and at university, concluding that they received more understanding and respect at university:
The lecturers have been really good because the main dynamic is shifted. Like a teacher is like we have to control and discipline these students and make them do stuff. In University, it’s the opposite, right? (Alex)
I thought University was way more understanding and also way more open about mental health issues in general, I think. Not just with autism, but with other kinds of mental health issues. (Darian)
I guess it’s just a bit more relaxed and they [University] treat you with a lot more respect, I guess. (Frankie)
Previous research concurs that flexible environments and educators can provide a meaningful form of support (Couzens et al, 2015) and increase engagement levels for autistic students (Dillon et al, 2016). Participants in this study appreciated when educators showed acceptance and facilitated an open discussion of neurodivergence, as this created an atmosphere where they felt understood. Mitchell et al (2021) argue that outcomes for autistic people can be improved when society becomes more tolerant of diversity and seeks to learn from neurodivergent people, an attitude modelled by some of the educators and institutions, which participants described positively in this study.
It was striking in this research that three of the five participants interviewed identified university as an environment where they felt particularly understood and supported. This finding conflicts with previous research on the experiences of autistic university students, which found that university staff underestimated the challenges faced by autistic students (Knott and Taylor, 2014) and facilitated discriminatory classroom discussions about autism (Gelbar, 2015). It is heartening to see that some participants found that universities provided them with an environment where they felt understood, particularly because empathetic staff were found to be a significant factor in enabling autistic students to maintain a sense of wellbeing (Couzens, 2015; Sarrett, 2018).
Accommodations
Another theme that arose in participants’ positive recollections of education were times when educators adjusted the way they organised lessons or provided additional support to make their autistic pupils feel more confident and comfortable in the classroom. I have defined these forms of support broadly as ‘accommodations’. Alex recalled that for them, receiving a study assist at university was beneficial:
Sometimes because of my disability and my Asperger’s, I don’t understand what the teacher wants from me, so he [the study assistant] helps to explain that. (Alex)
Darian appreciated receiving an adjustment in an official capacity, because this allowed them to advocate for themselves:
I was allowed to put in earplugs because everyone else was writing and making noises that would be so distracting that I couldn’t concentrate. I just needed something to plug my ear so it would be quiet, and some teachers were like “you’re not allowed to bring anything but a pen”. But then I could obviously be like well, I’m allowed to plug my ears. (Darian)
Frankie reflected that the most beneficial support they received in higher education was a mentor who helped them to navigate the non-academic side of university life:
The mentor was the biggest thing because she was able to breakdown my problems into easier steps when I was struggling. It was nice to have someone who I could bounce ideas off, who I would check in with every couple of weeks to make sure I was doing OK. I mean autistic people in general just need an extra little bit of support. (Frankie)
Although Frankie expressed the belief that ‘autistic people in general need a little bit of support’, Alex, by contrast, reported that a similar accommodation was not suitable for them:
The first thing they [the University] tried to do was give me this study support assistant. This person wasn’t useful because they were very socially focused. They seem to want me to talk about more about my feelings and stuff. (Alex)
The accommodations praised by participants targeted issues that have been highlighted in previous research as potential barriers to autistic students thriving in education, such as sensory challenges (Sproston and Sedgewick, 2017; Sarrett, 2018), organisational tasks (Ward and Webster, 2018) and emotional and social difficulties (Wei et al, 2014; Gelbar, 2015).
Although these findings concur with previous research, it is interesting to note that each participant mentioned a different support need: accommodations perceived as helpful by one participant were found to be irrelevant by another. This research is based on the understanding that the participants in this study are individuals with unique experiences and preferences, and this is illustrated in these findings. The variability of autistic experiences and preferences has been highlighted in previous literature (Hassall, 2016; Lord, 2011; Verhoeff, 2012), and it has also been found that some autistic people may have traits that are atypical to the traditional symptomology of autism (Macintosh and Dissanayake, 2006). This is significant in the context of autistic women and nonbinary people, as although it has been suggested that these groups may have different experiences and traits in comparison to autistic men (Whitlock et al, 2020; Bargiela et al, 2016; Hillier et al, 2020), they are still comprised of individuals who do not necessarily share homogenous needs and preferences.
Conclusion
This study has aimed to address a literature gap about the experiences of autistic people in the school environment by consulting directly and specifically with autistic women and nonbinary people. These groups have been overlooked in previous research (Hsiao et al, 2013, Cridland et al, 2014; Strang et al, 2018) despite evidence suggesting that they may experience unique challenges during education (Bargiela et al, 2016; Oswalt and Lederer, 2017). It is increasingly recognised (Milton, 2012, Macleod et al, 2014, Howard et al, 2019) that consulting directly with autistic people in research can provide insights otherwise inaccessible to neurotypical researchers, and this project has aimed to contribute to this growing body of research by prioritising participant voice throughout. This is particularly valuable in the context of supporting autistic women and nonbinary people in education, as their experiences have been highlighted as an area where greater understanding is especially needed (Kirkovski, 2013; Bennett and Goodall, 2016).
A limitation of this study is that the participants of this study represented a specific subset of autistic women and nonbinary people in that all participants had either completed or were currently studying for university courses. Due to this fact, the current research may lack perspectives of autistic women and nonbinary people who struggled academically in education. Kanfiszer et al (2017) argue that due to the diverse nature of autism, the experiences of less intellectually attaining autistic people may be different than those of individuals who have succeeded academically. It is important that going forward, research continues to seek out perspectives that do justice to the heterogenous population of autistic individuals.
As previously noted, the experiences of the participants in this research may not be exclusive to autistic women and nonbinary people. Although I contend that it is likely that the experiences of autistic people of marginalised genders may be qualitatively different to those of autistic men (Hillier et al, 2020), it is possible that the issues my participants identified may be shared by autistic men, or by neurotypical women and nonbinary people. Although generalisability was not the aim of this paper, if these conclusions are to be extrapolated further, it may be useful to conduct a comparative study with autistic men, or neurotypical women and nonbinary people, to ascertain which challenges may be distinct to the intersection of gender and autism.
This study has shown that to support autistic women and nonbinary people in their classrooms, for educators to increase their awareness of the many presentations of autism and develop flexible strategies to support students. The Autism&Uni research initiative has been commissioned by the European Union to provide examples of best practice to university staff (Fabri et al, 2016). I recommend that such initiatives continue with this aim, while expanding their scope to discuss the specific challenges faced by autistic female and nonbinary students. I argue that the experiences of autistic people are best understood by consulting with such individuals directly (Glynne-Owen, 2010), and thus I recommend that specialist information for educators about autism in females and nonbinary people is created in close consultation with these groups.
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