“It Was Like the Final Piece in the Puzzle for Me”: A Qualitative Study on the Experiences of Autistic Women Initially Diagnosed with Borderline Personality Disorder

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Powell, T., Parker, J., Kitson, H., & Rogalewski, M. (2024). “It Was Like the Final Piece in the Puzzle for Me”: A Qualitative Study on the Experiences of Autistic Women Initially Diagnosed with Borderline Personality Disorder. Autism in Adulthood, 6(4), 428-437. https://doi.org/10.1089/aut.2023.0031

Publication date: 17 Jan 2024 Added to AutiHub: 24 Sep 2026 Type: Article Article language: English
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Authors

Publication authors
4
Publication authors identified as autistic
1 / 4 (25.0%)
  1. Trevor Powell
  2. Jennie Parker *
  3. Hazel Kitson
  4. Maja Rogalewski

Abstract

BACKGROUND: Women who self-harm and experience complex mental health difficulties are frequently diagnosed with borderline personality disorder (BPD), also known as emotionally unstable personality disorder. Emerging research suggests that self-harm may often be better explained through the lens of autism, and that greater consideration should be given to the clients' motivations for self-harm. How time alone is experienced may also be a differentiating factor. The objective of this study was to investigate individuals' perceptions of a change in diagnosis, experiences of self-harm, and fear of real or imagined abandonment, with the aim of improving the accuracy of initial diagnosis. METHOD: Eight women, first diagnosed with BPD, then autism, and with a history of self-harm and multiple admissions to a psychiatric hospital, underwent a semistructured interview, which was recorded, transcribed, and analyzed using thematic analysis. RESULTS: Three main themes and 11 subthemes were identified. Theme one centers around participants' "Journey through the diagnostic and therapeutic jungle." Theme two is entitled "Self-harm as a developed and systematic way of coping." Theme three is entitled "Alone is not abandoned." CONCLUSIONS: Better awareness and understanding of the subtle differences between BPD and autism are essential, as misdiagnosis leads to misinformed treatments, which are often contraindicative. Recognition of these specific, differentiating traits is most evident with a detailed neurodevelopmental history. This study suggests two potential factors for consideration in a neurodevelopmental history: first, the triggers and functions of self-harm, which often starts early in childhood, and second, limited awareness or absence of feelings of fear of abandonment alongside contentment with spending time alone. Community brief Why is this an important issue? Undiagnosed autistic women may be diagnosed with borderline personality disorder (BPD), often based upon a history of self-harm and co-occurring mental health difficulties. This can lead to inappropriate and costly psychological treatments and the person not finding an appropriate understanding of themselves. What was the purpose of this study? The purpose of this study is to understand the experiences of eight autistic women to improve accuracy of diagnosis. This study also aims to explore issues around “self-harm” and what underlies it, the experience of “time alone,” and “sensitivities to abandonment.” What did the researchers do? We interviewed eight women who were initially diagnosed with BPD, then as autistic. All women had a history of self-harm, and multiple admissions to a psychiatric hospital. Interviews were recorded, transcribed, and analyzed in a way that highlighted common themes. What were the results of the study? People interviewed found that having multiple previous diagnoses or having diagnoses changed was confusing. Comparatively, a subsequent autism diagnosis felt similar to “the final piece of the puzzle.” These previous diagnoses often focused on self-harm as a signifier of BPD, although for the majority, this did not feel similar to a fitting diagnosis. For participants, self-harm was a way of coping from an early age, with poorly understood autistic frustrations (e.g., sensory, change, uncertainty, social) and less about interpersonal relationships. It was also systematic and planned, as a way of regaining control. Participants reported that they were generally comfortable with “time alone,” or time away from others. While friends were viewed as important, an absence of contact was generally not associated with feelings of abandonment, which are often attributed to BPD. Furthermore, emotions such as jealousy, possessiveness, and dependency were often difficult for participants to understand and identify with. Individuals talked about how eventually finding self-understanding through an autistic lens helped them to contextualize their early and current life experiences. What do these findings add to what we already know? This study highlights the need for clinicians to improve the approach to diagnosis. Our findings potentially suggest two new factors for consideration. First, self-harm often occurred at an early age and can be attributed to characteristics of autism, rather than interpersonal reasons. Second, most participants did not experience lack of contact from others as “real or imagined abandonment,” a core diagnostic feature of BPD. Instead, they were often content with time away from others. What are the potential weaknesses in the study? This is a small-scale study based on self-report of experiences of only a self-selecting group. The autistic community is diverse, and a larger study may be more representative of a wider demographic. How will these findings help autistic adults now or in the future? Hopefully, the results of the study will help to improve understanding of autistic women, particularly around self-harm. Ultimately, the aim is to improve accuracy of diagnosis, which might mean retaining a curiosity around possible “personality disorder,” without making assumptions when assessing a woman with a history of self-harm.

Bibliography cited by this reference

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Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 2 Oct 2026 01:01.

Cited references
51
With a DOI
39
Without a DOI, from raw bibliography text
12
6 / 51 (11.8%) cited references include at least one author identified as autistic.
References with data to complete
11 / 51 (21.6%)
References with detected author names
49 / 51 (96.1%)
Without detected author names
2
Without a structured title
11
Without a stable identifier
12
References with raw author names still to review
2
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
187
From DOI or external metadata
187
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
3
56 / 187 (29.9%) names are linked to an author already present in AutiHub. 131 / 187 (70.1%) names are not yet linked.
Names linked to a person identified as autistic
6 / 187 (3.2%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 6 / 56 (10.7%). Distinct people identified as autistic: 2 / 160 (1.2%).
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