"I was always on the outside, watching quietly": Autistic women reflect on school experiences

Research on autism has historically focused on males, leading to underdiagnosis and misdiagnosis of autism in girls and women. This study, grounded in Critical Autism Theory and Intersectionality Theory, aimed to address this gap by exploring the school experiences of autistic women from kindergarten through college. The underrepresentation of autistic girls and women in research has resulted in limited understanding of their unique needs and challenges, particularly within the educational setting. Misdiagnosis is prevalent, with conditions such as borderline personality disorder, mood disorders, or OCD often substituted for an autism diagnosis. This misdiagnosis is attributed to stereotypes about autism presentation and a lack of training among clinicians and school psychologists in the use of assessment tools designed to identify autism in females. The absence of female voices in shaping research and interventions necessitates qualitative study which centers the perspectives of those directly impacted by this lack of understanding. This phenomenological study uses the voices of autistic women to illuminate their educational journeys and provide recommendations for creating more supportive school environments.

Existing research on autism primarily focuses on males, even though studies suggest the male-to-female ratio may be significantly skewed. There is a growing body of work examining diagnostic differences and the challenges of identification and diagnosis in females. Some research explores gender differences, masking, and experiences with trauma. However, qualitative studies exploring the specific school experiences of autistic women are limited. While a few qualitative studies focused on the experiences of autistic girls and women, they often addressed specific areas like trauma, masking, or misdiagnosis and rarely covered the full range of school experiences, particularly in the US context. The lack of qualitative research from the lived experience of these girls and women necessitates this study's phenomenological approach.

This study employed a phenomenological approach with a purposeful sample of 14 autistic women recruited through autism service organizations, social media, and a psychologist specializing in autistic women. A pilot study with six participants informed the development of the interview protocol and process. The researchers learned that participants preferred receiving questions in advance and appreciated specific, rather than open-ended, questions. Photo-elicitation was used to stimulate memories, although the effectiveness varied among participants. Semi-structured interviews, conducted primarily using distance technologies, were audio and video recorded, transcribed, and de-identified. Data analysis involved thematic analysis guided by Braun and Clarke (2006), including iterative analysis by both researchers and participant member checking. Triangulation across participant interviews and member-checking with participants ensured trustworthiness. The first author's experience in mental health and as a neurodivergent person influenced the study design and interactions with participants, while the second author brought expertise in research design and analysis and in educational experiences for marginalized communities.

Six overarching themes emerged from the data: 1. **Accuracy of diagnosis matters:** Most participants (11 out of 14) were diagnosed in adulthood, highlighting the challenges of identifying autism in girls and women. Late diagnoses were attributed to a lack of awareness among professionals and the prevalence of gendered stereotypes of autism. The diagnosis was transformative for participants, providing self-understanding, access to accommodations, and support. 2. **Details matter:** Participants recalled vivid details about their school experiences, emphasizing the importance of these specific aspects in their meaning-making and understanding of events. Their focus on accuracy sometimes led to conflict with parents or teachers who viewed details as trivial. These details sometimes provided a sense of routine, predictability, and even safety. 3. **Meaning of sensory and emotional experiences:** Sensory experiences in school settings were often overwhelming or painful, frequently intertwined with emotions. The school environment could be intensely stimulating and contribute to emotional overwhelm and challenges in academic functioning. 4. **Invisibility/not belonging:** All participants felt a sense of disconnection and invisibility. This was linked to masking behaviors and the lack of professional recognition of their autistic traits. This invisibility resulted in a lack of appropriate support and accommodations. This also caused the participants to feel like outsiders and not belonging to their peers. 5. **Relationship and friendship challenges:** Participants struggled with forming friendships due to challenges in social interaction and understanding others' intentions. While some formed close friendships with individuals who understood them, many experienced social isolation and loneliness, which impacted their self-esteem. This also highlighted the challenges with peers and how to navigate social situations. 6. **Layers of vulnerability:** Participants reported high rates of bullying, abuse (including sexual abuse), and exploitation, exacerbated by missed diagnoses, inadequate support, and systemic failures. The participants also expressed high rates of trauma and how they learned to cope with these challenges.

The findings highlight significant gaps in the identification, diagnosis, and support of autistic girls and women within educational settings. The high rates of late diagnosis underscore the need for increased awareness among professionals and the development of more effective screening tools. The themes of invisibility, isolation, and vulnerability point to the crucial role of creating inclusive and supportive school environments. The study’s emphasis on the perspectives of autistic women themselves offers valuable insight into improving educational practices and interventions. This study also speaks to the importance of intersectionality; the multiple layers of marginalization experienced by many of these participants.

This study underscores the urgent need for earlier and more accurate diagnosis of autism in girls and women, accompanied by increased awareness among educators and mental health professionals. Recommendations include training on identifying autism in girls, addressing the high rates of trauma experienced by this population, and creating more inclusive school environments. Future research should explore the experiences of autistic women with diverse language skills and support needs, as well as examine the experiences of those who identify as autistic without a formal diagnosis.

The study's limitations include its sample size (14 participants), geographic focus (Indiana and surrounding areas), and the inclusion criterion of a formal autism diagnosis. The broad scope of the interview questions, while enabling rich data collection, might have diluted the focus on school experiences specifically. The sample's predominantly high verbal ability participants might limit the generalizability of the findings to autistic women with more significant communication challenges.