I-RAP
Improving Recognition and Understanding of Autism and Personality Disorder
Information about autism and personality disorder
1. Highlights
Trigger warning: this section contains references to trauma.
Accurate recognition of autism:
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Improves self-understanding and self-compassion
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Supports a person feeling understood and listened to by mental health services
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Prevents misunderstanding by mental health services and the world
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Enables autistic people to create environments that better fit their needs
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Facilitates adaptation of interventions and reasonable adjustments
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Prevents offer of inappropriate and distressing interventions
2. Further Information
#autismnotpd is a popular hashtag on X (Twitter), referring to the idea that people are sometimes misdiagnosed as having a personality disorder when they are actually autistic [1, 2, 3, 4]. Whether “personality disorder” is ever a valid diagnosis to give someone has become a contentious issue in recent years, particularly in the UK. There is an increasing perception that this is a stigmatising and pejorative label that assigns blame to people who are often trauma survivors [5, 6, 7]. Potential misdiagnosis of people who are actually autistic has become particularly emotive given a number of high-profile inquests where an autistic person has died by suicide, against a background of mental health services diagnosing them with a personality disorder and failing to offer needed care and support [8, 9]. Others have similarly shared their personal stories of the distress caused by not having their autism recognised [10].
Missing autism and/or misdiagnosing autism as personality disorder could lead to people being offered inappropriate explanations for their experiences, being offered unhelpful or distressing treatment, and being denied access to needed support. When autism is accurately recognised, the resulting transformation in how people understand themselves and their needs, and the changes they can put in place in their lives to create an environment that better fits their needs, can be life-changing [11, 12, 13, 14]. This is illustrated in the following quotes from late-diagnosed autistic adults [13]:
“It was the first time anything about me had made any sense.”
“Now I’m happier. I know so much more about myself and I like how I interpret the world.”
Additionally, accurate recognition of autism can transform how clinical services understand and treat their patients, enabling the treatment and services offered to be adapted to better meet their needs [15].
By contrast, as reviewed above, a diagnosis of personality disorder can lead to stigmatising attitudes from staff, as well as internalised stigma where a person has a negative self-perception [16, 17]. Further, psychological therapies for borderline personality disorder can potentially be unhelpful and distressing if they are not adapted for autistic needs. For example, some autistic people have spoken about finding psychodynamic therapies including mentalization based therapy distressing and overwhelming, due to its emphasis on talking about interpersonal processes in a group context [18]. If autism is recognised, more tailored support or reasonable adjustments can be offered [19, 20].
Self-recognition of autistic traits without a formal diagnosis is becoming increasingly common. But when clinical services do not recognise a person’s own understanding of their experiences, this can be re-traumatising and disrupts trust in health professionals, jeopardising future help-seeking and undermining a person’s sense of credibility as a knower of their own experiences [18, 21]. The damage that such experiences can cause is illustrated in this quote here, from a late-diagnosed autistic person:
“[Clinician] would say ‘oh, you’ve got borderline personality disorder’ … I explained to him exactly why I wasn’t BPD … I wasn’t getting any answers, I just stopped going. I just stopped asking for help.” [22]
People who meet diagnostic criteria for borderline personality disorder and who have undiagnosed autism are more likely to attempt suicide than people with borderline personality disorder who are not autistic. Additionally, they are more likely to experience difficulties in social relationships [23]. This is potentially linked to the stress of camouflaging autistic differences, which has been shown to increase suicidality [24], and the impact of autistic experiences being unrecognised or misdiagnosed. In the most serious cases, failure to adequately recognise autistic experiences, alongside failure to recognise a person’s strong feelings that they have been misdiagnosed with borderline personality disorder, can be fatal [8].
By contrast, members of our I-RAP lived experience panel, who have experienced or witnessed autism being recognised in people diagnosed with a personality disorder, have testified to the transformative power of receiving an autism diagnosis for self-understanding and self-compassion.
3. References
[1] Aves, W. (2020). BPD: It's More Than Borderline Abusive. BPD: It's More Than Borderline Abusive (psychiatryisdrivingmemad.co.uk) [2] Lai, M. C., & Baron-Cohen, S. (2015). Identifying the lost generation of adults with autism spectrum conditions. The Lancet Psychiatry, 2(11), 1013-1027. [3] Sweetmore, V. (2021). Mental health nursing and autism: I am a mental health nurse so why did it take me so long to realize I'm autistic? Journal of Psychiatric and Mental Health Nursing, 29(6), 770-773. [4] Watts, J. (2023). Engendering misunderstanding: autism and borderline personality disorder. International Journal of Psychiatry in Clinical Practice, 27(3), 316-317. [5] Hartley, S., Baker, C., Birtwhistle, M., Burgess, J. L., Chatburn, E., Cobbaert, L., ... & Timoclea, R. (2022). Commentary: Bringing together lived experience, clinical and research expertise–a commentary on the May 2022 debate (should CAMH professionals be diagnosing personality disorder in adolescence?). Child and Adolescent Mental Health, 27(3), 246-249. [6] Shaw, C., & Proctor, G. (2005). I. Women at the margins: A critique of the diagnosis of borderline personality disorder. Feminism & Psychology, 15, 483–490. [7] Watts, J. (2017). Testimonial injustice and borderline personality disorder. [Blog post]. Available from: https://www.huffingtonpost.co.uk/dr-jay-watts/testimonial-injusticeand_b_14738494.html [8] Autistica (2024a). https://www.autistica.org.uk/what-is-autism/autistic-strengths [9] Leigh Day (2024). A lack of independent advocacy contributed to a 22-year-old mother taking her own life after her baby was taken into care, an inquest has found. https://www.leighday.co.uk/news/news/2024-news/a-lack-of-independent-advocacy-contributed-to-a-22-year-old-mother-taking-her-own-life-after-her-baby-was-taken-into-care-an-inquest-has-found/ [10] Autistica (2024b). Zoe’s story. https://www.autistica.org.uk/get-involved/my-autism-story/zoes-story [11] Belek, B. (2019) Articulating sensory sensitivity: from bodies with autism to autistic bodies. Medical Anthropology, 38(1), 30-43. [12] Leedham A, Thompson AR, Smith R, Freeth M. (2020). 'I was exhausted trying to figure it out': The experiences of females receiving an autism diagnosis in middle to late adulthood. Autism, 24(1), 135‐146. [13] Lewis, L.F. (2016). Exploring the Experience of Self-Diagnosis of Autism Spectrum Disorder in Adults. Archives of Psychiatric Nursing, 30(15):575-580. [14] Zener, D. (2019). Journey to diagnosis for women with autism. Advances in Autism, Vol. 5 No. 1, pp. 2-13. [15] Loizou, S., Pemovska, T., Stefanidou, T., Foye, U., Cooper, R., Kular, A., ... & Johnson, S. (2023). Approaches to improving mental health care for autistic people: a systematic review. MedRxiv, 2023-03. [16] Baker, J., & Beazley, P. I. (2022). Judging personality disorder: A systematic review of clinician attitudes and responses to borderline personality disorder. Journal of Psychiatric Practice®, 28(4), 275-293. [17] Ociskova, M., Prasko, J., Latalova, K., Sedlackova, Z., Kamaradova, D., Sandoval, A., Grambal, A. (2017). F*ck your care if you label me! Borderline personality disorder, stigma, and self-stigma. Activitas Nervosa Superior Rediviva, 59(1): 16–22. [18] Parker, J. (2019). Words That Carry On – In Your Words. McPin Foundation. From https://lindsayriddoch.files.wordpress.com/2019/09/words-that-carry-on.pdf [19] Keenan, E. G., Gurba, A. N., Mahaffey, B., Kappenberg, C. F., & Lerner, M. D. (2024). Leveling up dialectical behavior therapy for autistic individuals with emotion dysregulation: clinical and personal insights. Autism in Adulthood, 6(1), 1-8. [20] NHS England (2023). Meeting the needs of autistic adults in mental health services. https://www.england.nhs.uk/long-read/meeting-the-needs-of-autistic-adults-in-mental-health-services/ [21] Crichton, P., Carel, H., Kidd, I.J. (2017). Epistemic injustice in psychiatry. British Journal of Psychiatry, 41(2), 65-70. [22] Leedham A, Thompson AR, Smith R, Freeth M. (2020). 'I was exhausted trying to figure it out': The experiences of females receiving an autism diagnosis in middle to late adulthood. Autism, 24(1), 135‐146. [23] Rydén, E., Rydén, G., Hetta, J. (2008). Borderline personality disorder and Autism Spectrum Disorder in females – A cross-sectional study. Clinical Neurosychiatry, 5(1), 22-30. [24] Cassidy, S., Bradley, L., Shaw, R. et al. (2018). Risk markers for suicidality in autistic adults. Molecular Autism 9, 42.
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