Many autistic adults face extra and vital limitations to analysis, with detrimental impacts.
Autistic adults who have been undiagnosed in childhood have reported a variety of unfavorable experiences related to their missed analysis, together with social isolation, diminished self-understanding, and insufficient psychological healthcare (Huang Y. et al, 2020; Leedham A. et al, 2020). Nevertheless, for a lot of late-diagnosed autistic adults, receiving an autism analysis brings a way of reduction, self-acceptance, and improved administration of psychological and bodily well being situations (Lilley R. et al, 2022; Stagg SD & Belcher H, 2019).
Lately, researchers have sought to discover the limitations to autism analysis, significantly amongst adults. Inconsistent autism coaching amongst psychological well being professionals could contribute to autistic traits being missed or dismissed (Crane L. et al, 2019), particularly in traditionally under-diagnosed teams equivalent to girls and gender minorities. Moreover, overlapping traits between autism and situations equivalent to Borderline Persona Dysfunction (BPD in DSM-5, also referred to as Emotionally Unstable Persona Dysfunction in ICD-10) could contribute to misdiagnosis (Might T. et al, 2021) in these cohorts.
Tamilson, Eccles and Shaw (2024) discover the experiences of autistic adults who had beforehand obtained a analysis of BPD, to higher perceive the impacts of misdiagnosis.
Missed analysis, or misdiagnosis, can have detrimental impacts on anybody, however particularly on autistic adults.
Strategies
This was an interpretive phenomenological examine, framed inside a social constructionist paradigm – an acceptable method for addressing the exploratory analysis questions.
Purposive sampling through social media promoting was used to recruit contributors who have been: English-speaking autistic adults (together with self-diagnosed) with a earlier analysis of BPD, situated in the UK.
One-to-one semi-structured interviews have been performed and audio-recorded through Microsoft Groups. Interview questions have been knowledgeable by the researchers’ information, a literature evaluate, and people with related lived expertise.
Interpretive phenomenological evaluation (IPA) was used to generate detailed accounts of contributors’ particular person experiences, which have been then consolidated into group experiential themes.
Outcomes
Ten contributors have been interviewed (imply age = 34; 90% feminine, 10% questioning gender identification). The common age for receiving a BPD analysis was 22, and 29 for autism.
Ten group experiential themes have been constructed and sequenced to replicate the journey of contributors, beginning in youth:
- Struggles in early years
- Members all felt completely different from others and struggled to ‘slot in’ from an early age.
- Nevertheless, none have been recognized as autistic in childhood.
- Missed analysis of autism
- Many felt their autism was missed due to gender bias and poor information about autism amongst psychological well being professionals.
- A recipe for misdiagnosis
- Members felt that psychological well being professionals readily misattributed their traits and experiences (e.g., self-harm, ‘autistic shutdowns’, signs of childhood trauma) to BPD.
- This impeded recognition of their autistic traits.
- Receiving a analysis of BPD
- BPD felt like a “lazy analysis” (P5) that was given “too readily” (P1).
- No uniform strategies have been recognized, within the assigning of this analysis – however contributors felt powerless to disagree with a analysis.
- It overshadowed their particular person wants and prevented acceptable care.
- Disadvantages of receiving a BPD analysis
- Robust social stigma in the direction of BPD, deeply impacted contributors’ self-perception, creating emotions of disgrace along with dissonance with their lived understanding of themselves.
- All contributors skilled difficulties accessing ample psychological healthcare after the analysis.
- When companies have been accessed, they could possibly be dangerous and traumatic: contributors turned healthcare-avoidant, feeling dehumanised and stigmatised.
- Autism analysis
- Members who sought an autism analysis confronted limitations, together with professionals not believing them, delayed referrals, and lengthy wait occasions.
- Prognosis with autism was related to expressions of reduction, and self-perception that was not tied to BPD.
- Constructive facets of autism analysis
- In distinction with the method of in search of analysis, receiving an autism analysis was described as positively “life-changing” (P2).
- Advantages included higher therapy from others, self-acceptance, improved psychological well being, and acceptable lodging in training and employment.
- Members expressed experiencing much less ‘blame’ for his or her lived expertise, and extra validated in expressing their well being considerations.
- Adverse facets of autism analysis
- Though contributors total skilled their autism analysis extra favourably than their BPD analysis, they nonetheless reported expertise of social stigma and ableism in training and healthcare settings.
- Reflections on diagnostic labelling
- Most paricipants thought-about their BPD analysis was incorrect, reasonably than concurrent with autism.
- Nevertheless, BPD was described as a tough label to formally “do away with” (P10).
- Serving to others
- Members expressed a progress mindset arising from their autism analysis, and reported their roles as advocates for others questioning their analysis, encouraging persistence when pursuing an autism analysis.
Though each Autism and BPD analysis led to experiences of stigma, contributors recognized with autism completely, not concurrent BPD.
Conclusions
By exploring the experiences of autistic adults beforehand, and sometimes incorrectly, recognized with BPD, this examine revealed the substantial unfavorable impacts of missed analysis and misdiagnosis.
Members’ felt their autistic variations have been mischaracterised as BPD by psychological well being professionals as a consequence of gender bias, stereotypes and insufficient information about autism. Receiving a analysis of BPD had profound unfavorable impacts on their self-concept, bolstered by stigma and traumatic healthcare experiences.
Receiving an eventual autism analysis was described as ‘life-changing,’ enabling self-acceptance and acceptable help. Tamilson and colleagues (2024) “name for improved autism coaching for psychiatrists” to forestall misdiagnosis of autistic adults.
This examine provides to the name for psychiatrists to have better diagnostic coaching for autism in adults.
Strengths and limitations
Strengths
This examine responds to a transparent group want and considers advantages for the autistic group from the outset.
Strengths of the examine embrace:
- Consistency within the chosen analysis paradigm (social constructionism), methodology (interpretive phenomenology and analytical method (IPA)); all of that are acceptable for addressing the exploratory analysis query.
- The positionality of the analysis staff was properly described and contains related private {and professional} experience.
- Research conceptualisation and improvement of the subject information have been knowledgeable by people with lived expertise.
- The sampling method and pattern measurement have been appropriate for IPA.
The inclusion of self-diagnosed autistic contributors was commendable – as this acknowledges the limitations to formal analysis skilled by a cohort historically excluded from analysis, whose views are extremely related to the examine goals and findings.
The ensuing themes are detailed, constantly supported by illustrative quotes, and complemented by figures that creatively symbolize the info. The poem in Desk 2 humanises the info in a method that’s uncommon to see in analysis.
Limitations
Tamilson and colleagues acknowledge that the info assortment method could have been inaccessible to autistic people who find themselves non-speaking or uncomfortable with the social calls for of an internet interview, that means that the distinctive views of such people have been doubtless excluded.
It seems that various interview approaches weren’t provided, which can be a logistical determination. Nevertheless, the authors don’t describe another efforts to enhance inclusivity, which creates a missed alternative for minoritised communities who they determine are extra liable to receiving a misdiagnosis. Tips to advertise inclusion of autistic adults in analysis (Nicolaidis C. et al, 2019) counsel lodging equivalent to:
- Sharing the interview schedule prematurely.
- Offering various interview codecs (e.g., e-mail or textual content message).
- Permitting a help individual to be current.
These lodging can take away limitations to participation and enhance illustration of various autistic voices in analysis, and are a suggestion for researchers to contemplate in future initiatives.
Clearly, with a 90% feminine pattern, the researchers may have achieved extra to incorporate a broader vary of individuals on this examine.
As this undertaking was performed by self-selected survey participation, not a lot is understood relating to the diagnostic processes undergone by contributors in relation to both BPD or autism analysis, or how they are often improved. It could be of profit for a future examine to additionally search experiential qualitative knowledge relating to psychological well being professionals’ views on diagnostic procedures and coaching in the identical geographical space to see if cross-comparison or standardisation is possible, protecting in thoughts the extra various inhabitants coming to in search of autism diagnoses in maturity.
This examine captures the lived expertise of some autistic adults. The expertise of suppliers stays to be captured.
Implications for apply
Missed analysis and misdiagnosis of autistic adults has garnered substantial consideration recently. Analysis exploring experiences of late autism analysis has proliferated previously ten years (e.g., Huang Y. et al, 2020; Leedham A. et al, 2020; Lilley R. et al, 2022; Lupindo BM. et al, 2023; Stagg SD & Belcher H, 2019), and trending social media content material about lived expertise of late- or self-diagnosis has introduced this subject into public discourse (Krouse L, 2022).
Every late-diagnosed autistic individual may have a novel perspective and expertise relating to their analysis. Nevertheless, the above literature reveals some widespread insights, which mirror the findings of this examine by Tamilson and colleagues, in addition to my very own expertise as a late-diagnosed autistic lady:
- Undiagnosed autistic individuals typically really feel completely different to others from a younger age, however could not perceive why. This may be detrimental to their psychological well being and self-perception.
- Many have felt their autistic traits have been missed or dismissed by psychological well being professionals, stopping well timed analysis and entry to obligatory care.
- Receiving an autism analysis typically brings a way of validation, reduction, group, self-acceptance, and entry to lodging and acceptable care.
This examine by Tamilson and colleagues extends upon the present literature by offering invaluable new insights into the precise harms related to misdiagnosis of BPD amongst autistic adults. Although future cross-sectional analysis is required to find out the prevalence of this misdiagnosis and its related harms, I imagine the implications of those findings for medical apply can’t be understated. Analysis on this subject constantly signifies the need of higher autism coaching amongst psychological well being professionals, nonetheless, this examine illuminates the precise methods through which gender bias and stereotyping of sure diagnostic labels can affect misdiagnosis and perpetuate hurt.
As such, coaching shouldn’t solely goal to enhance medical information, but it surely should additionally problem biases and stereotypes relating to autism and diagnoses with overlapping traits, like BPD. Selling the variability inherent in autism, together with amongst girls and gender minorities, could help extra nuanced approaches to differential analysis, stopping mislabelling and insufficient care.
Although the rationale for this examine is framed by the angle of social justice for the autistic group, the implications for these recognized with BPD and different situations really feel equally evident, as many contributors felt that they have been uncared for and mistreated in psychological well being settings as a consequence of structural stigma in the direction of BPD. Regardless of their diagnostic label, everybody deserves entry to affirming psychological healthcare.
Stigma is commonly a big barrier to accessing well timed and acceptable psychological healthcare, which ought to be out there to all.
Assertion of pursuits
None to declare.
Hyperlinks
Main paper
Tamilson B, Eccles JA, & Shaw SCK. (2024) The experiences of autistic adults who were previously diagnosed with borderline or emotionally unstable personality disorder: A phenomenological study. Autism 2024 1-14.
Different references
Crane L, Davidson I, Prosser R, & Pellicano E. (2019) Understanding psychiatrists’ knowledge, attitudes and experiences in identifying and supporting their patients on the autism spectrum: Online survey. BJPsych Open 5(3) e33.
Huang Y, Arnold SR, Foley KR, & Trollor JN. (2020) Diagnosis of autism in adulthood: A scoping review. Autism 24(6),1311-1327.
Krouse L. (2022 August 17) Women are discovering they may have ADHD or be on the autism spectrum from trending TikTok videos. Ladies’s Well being.
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.
Lilley R, Lawson W, Corridor G, Mahony J, Clapham H, Heyworth M, Arnold SR, Trollor JN, Yudell M, & Pellicano E. (2022) ‘A way to be me’: Autobiographical reflections of autistic adults diagnosed in mid-to-late adulthood. Autism 26(6) 1395-1408.
Lupindo BM, Maw A, & Shabalala N. (2023) Late diagnosis of autism: Exploring experiences of males diagnosed with autism in adulthood. Present Psychology 42 24181–24197.
Might T, Pilkington PD, Younan R, & Williams Okay. (2021) Overlap of autism spectrum disorder and borderline personality disorder: A systematic review and meta-analysis. Autism Analysis 14(12) 2688-2710.
Nicolaidis C, Raymaker D, Kapp SK, et al. (2025) The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants. Autism: The Worldwide Journal of Analysis and Apply 23(8) 2007-2019.
Stagg SD, & Belcher H. (2019) Living with autism without knowing: Receiving a diagnosis in later life. Well being Psychology and Behavioral Drugs 7(1) 348–361.
