In an innovative phenomenological study, researchers at Brighton and Sussex Medical School (BSMS) have explored the lived experiences of autistic adults who were previously diagnosed with Borderline Personality Disorder (BPD). The study reveals the significant overlap between autism and BPD, shedding light on the profound impact of misdiagnosis on individuals' lives. 

Conducted through interpretive phenomenological analysis, the study involved one-to-one, semi-structured interviews with 10 participants. Each participant recounted unnoticed autistic traits from childhood and described the pervasive impact of a BPD misdiagnosis. The study highlights the challenges of distinguishing between autism and BPD, especially among autistic women, who often face misdiagnosis.

In recent years, a growing number of studies have investigated the connections between autism and BPD, revealing significant overlaps and challenges in distinguishing between these two conditions. Notably, many autistic individuals, particularly women, report being misdiagnosed with BPD.

Key findings:

Stigma and diagnostic overshadowing

Participants felt that BPD was a misdiagnosis that introduced significant stigma and diagnostic overshadowing, leading to harmful experiences. The BPD diagnosis often resulted in healthcare professionals neglecting their true condition and imposing treatments that were not only unhelpful but detrimental.

Harmful treatments and masking

Treatments for BPD, such as promoting 'masking' of behaviours, were found to be harmful. Masking, or hiding true autistic traits, has been linked to increased suicide risk among autistic individuals. Participants experienced a sense of powerlessness, unable to challenge the BPD diagnosis despite feeling it was inaccurate.

The transformative impact of correct diagnosis

Receiving an autism diagnosis was described as "life-changing," offering deep validation and allowing participants to embrace their true selves. The autism diagnosis shifted the focus from trying to change who they are to accepting and supporting their differences, significantly improving their mental health and wellbeing.

Barriers to autism diagnosis

Participants faced substantial barriers in accessing autism assessments after being diagnosed with BPD, delaying appropriate support and prolonging their struggles.

Comparing stigma

While autism carries societal stigma, it is markedly different from the severe stigma associated with BPD. Autism stigma often questions competence, whereas BPD stigma implies individuals are broken and potentially harmful.

Dr Bruce Tamilson, the lead author of the study and a Psychiatry MSc student who currently works as a consultant Neuropsychiatrist and Liaison Psychiatrist in London, added: “This research is pivotal in understanding the issue of misdiagnosis and its profound impact on autistic individuals. By sharing these stories, the study aims to humanise and improve mental health services, fostering a more inclusive and understanding healthcare system. The participants' experiences serve as a powerful call to action for clinicians and researchers alike, emphasising the need for accurate diagnoses and appropriate support for all individuals.”

Dr Sebastian Shaw, Principal Investigator and Lecturer in Medical Education at BSMS, said: “This study underscores the necessity of improved autism training for healthcare professionals and recommends considering automatic autism screenings for adults diagnosed with BPD. It highlights that misdiagnosis is preventable with proper training and screening, leading to more accurate diagnoses and better support for individuals.”

Dr Jessica Eccles, Reader in Brain-Body Medicine and Neurodevelopmental Psychiatrist said: “This study shows how important it is that we realise that autism is every mental health clinician’s business and will hopefully lead to further much needed research at the intersect between neurodevelopmental and mental health conditions.”

The researchers have also called for further studies to explore the generalisability of these findings and to understand the perspectives of clinicians working in this area. This study amplifies the voices of autistic individuals, promoting positive changes in mental health services and preventing future misdiagnoses.

Read the full study, which is published in Autism.

Further information: https://www.bsms.ac.uk/about/news/2024/09-11-study-reveals-harrowing-experiences-of-misdiagnosis-of-borderline-personality-disorder-in-autistic-adults.aspx