Many autistic adults face further and vital limitations to prognosis, with detrimental impacts.
Autistic adults who have been undiagnosed in childhood have reported a variety of unfavourable experiences related to their missed prognosis, 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 prognosis brings a way of aid, 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 prognosis, notably 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, often known as Emotionally Unstable Persona Dysfunction in ICD-10) could contribute to misdiagnosis (Could T. et al, 2021) in these cohorts.
Tamilson, Eccles and Shaw (2024) discover the experiences of autistic adults who had beforehand acquired a prognosis of BPD, to higher perceive the impacts of misdiagnosis.
Missed prognosis, 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 applicable strategy for addressing the exploratory analysis questions.
Purposive sampling by way of social media promoting was used to recruit contributors who have been: English-speaking autistic adults (together with self-diagnosed) with a earlier prognosis of BPD, situated in the UK.
One-to-one semi-structured interviews have been carried out and audio-recorded by way of Microsoft Groups. Interview questions have been knowledgeable by the researchers’ data, a literature overview, 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 typical age for receiving a BPD prognosis was 22, and 29 for autism.
Ten group experiential themes have been constructed and sequenced to mirror the journey of contributors, beginning in youth:
- Struggles in early years
- Members all felt totally different from others and struggled to ‘slot in’ from an early age.
- Nevertheless, none have been identified as autistic in childhood.
- Missed prognosis of autism
- Many felt their autism was missed due to gender bias and poor data 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 prognosis of BPD
- BPD felt like a “lazy prognosis” (P5) that was given “too readily” (P1).
- No uniform strategies have been recognized, within the assigning of this prognosis – however contributors felt powerless to disagree with a prognosis.
- It overshadowed their particular person wants and prevented applicable care.
- Disadvantages of receiving a BPD prognosis
- 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 prognosis.
- When companies have been accessed, they could possibly be dangerous and traumatic: contributors grew to become healthcare-avoidant, feeling dehumanised and stigmatised.
- Autism prognosis
- Members who sought an autism prognosis confronted limitations, together with professionals not believing them, delayed referrals, and lengthy wait occasions.
- Prognosis with autism was related to expressions of aid, and self-perception that was not tied to BPD.
- Constructive features of autism prognosis
- In distinction with the method of looking for prognosis, receiving an autism prognosis was described as positively “life-changing” (P2).
- Advantages included higher remedy from others, self-acceptance, improved psychological well being, and applicable lodging in schooling and employment.
- Members expressed experiencing much less ‘blame’ for his or her lived expertise, and extra validated in expressing their well being issues.
- Destructive features of autism prognosis
- Though contributors total skilled their autism prognosis extra favourably than their BPD prognosis, they nonetheless reported expertise of social stigma and ableism in schooling and healthcare settings.
- Reflections on diagnostic labelling
- Most paricipants thought-about their BPD prognosis was incorrect, somewhat than concurrent with autism.
- Nevertheless, BPD was described as a troublesome label to formally “do away with” (P10).
- Serving to others
- Members expressed a progress mindset arising from their autism prognosis, and reported their roles as advocates for others questioning their prognosis, encouraging persistence when pursuing an autism prognosis.
Though each Autism and BPD prognosis 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, identified with BPD, this examine revealed the substantial unfavourable impacts of missed prognosis and misdiagnosis.
Members’ felt their autistic variations have been mischaracterised as BPD by psychological well being professionals as a result of gender bias, stereotypes and insufficient data about autism. Receiving a prognosis of BPD had profound unfavourable impacts on their self-concept, strengthened by stigma and traumatic healthcare experiences.
Receiving an eventual autism prognosis was described as ‘life-changing,’ enabling self-acceptance and applicable assist. 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 larger diagnostic coaching for autism in adults.
Strengths and limitations
Strengths
This examine responds to a transparent neighborhood want and considers advantages for the autistic neighborhood from the outset.
Strengths of the examine embody:
- Consistency within the chosen analysis paradigm (social constructionism), methodology (interpretive phenomenology and analytical strategy (IPA)); all of that are applicable 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 growth of the subject information have been knowledgeable by people with lived expertise.
- The sampling strategy and pattern measurement have been appropriate for IPA.
The inclusion of self-diagnosed autistic contributors was commendable – as this acknowledges the limitations to formal prognosis 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 characterize the information. The poem in Desk 2 humanises the information in a method that’s uncommon to see in analysis.
Limitations
Tamilson and colleagues acknowledge that the information assortment strategy could have been inaccessible to autistic people who find themselves non-speaking or uncomfortable with the social calls for of a web-based interview, which means that the distinctive views of such people have been probably excluded.
It seems that various interview approaches weren’t supplied, which can be a logistical choice. Nevertheless, the authors don’t describe every other efforts to enhance inclusivity, which creates a missed alternative for minoritised communities who they determine are extra susceptible to receiving a misdiagnosis. Tips to advertise inclusion of autistic adults in analysis (Nicolaidis C. et al, 2019) recommend lodging equivalent to:
- Sharing the interview schedule upfront.
- Offering various interview codecs (e.g., e-mail or textual content message).
- Permitting a assist particular person to be current.
These lodging can take away limitations to participation and enhance illustration of various autistic voices in analysis, and are a advice for researchers to think about in future tasks.
Clearly, with a 90% feminine pattern, the researchers may have carried out extra to incorporate a broader vary of individuals on this examine.
As this challenge was carried out by means of self-selected survey participation, not a lot is understood concerning the diagnostic processes undergone by contributors in relation to both BPD or autism prognosis, or how they are often improved. It will be of profit for a future examine to additionally search experiential qualitative knowledge concerning psychological well being professionals’ views on diagnostic procedures and coaching in the identical geographical space to see if cross-comparison or standardisation is possible, conserving in thoughts the extra various inhabitants coming to looking for autism diagnoses in maturity.
This examine captures the lived expertise of some autistic adults. The expertise of suppliers stays to be captured.
Implications for follow
Missed prognosis and misdiagnosis of autistic adults has garnered substantial consideration these days. Analysis exploring experiences of late autism prognosis 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 matter into public discourse (Krouse L, 2022).
Every late-diagnosed autistic particular person could have a singular perspective and expertise concerning their prognosis. Nevertheless, the above literature reveals some frequent 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 usually really feel totally 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 ignored or dismissed by psychological well being professionals, stopping well timed prognosis and entry to mandatory care.
- Receiving an autism prognosis usually brings a way of validation, aid, neighborhood, self-acceptance, and entry to lodging and applicable care.
This examine by Tamilson and colleagues extends upon the present literature by offering beneficial 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 consider the implications of those findings for scientific follow can’t be understated. Analysis on this matter constantly signifies the need of higher autism coaching amongst psychological well being professionals, nevertheless, this examine illuminates the precise methods during which gender bias and stereotyping of sure diagnostic labels can affect misdiagnosis and perpetuate hurt.
As such, coaching shouldn’t solely goal to enhance scientific data, however it should additionally problem biases and stereotypes concerning autism and diagnoses with overlapping traits, like BPD. Selling the variability inherent in autism, together with amongst girls and gender minorities, could assist extra nuanced approaches to differential prognosis, stopping mislabelling and insufficient care.
Although the rationale for this examine is framed by means of the angle of social justice for the autistic neighborhood, the implications for these identified 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 result of structural stigma in the direction of BPD. No matter their diagnostic label, everybody deserves entry to affirming psychological healthcare.
Stigma is commonly a major barrier to accessing well timed and applicable psychological healthcare, which must 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 have been beforehand identified with borderline or emotionally unstable character dysfunction: A phenomenological examine. Autism 2024 1-14.
Different references
Crane L, Davidson I, Prosser R, & Pellicano E. (2019) Understanding psychiatrists’ data, attitudes and experiences in figuring out and supporting their sufferers on the autism spectrum: On-line survey. BJPsych Open 5(3) e33.
Huang Y, Arnold SR, Foley KR, & Trollor JN. (2020) Prognosis of autism in maturity: A scoping overview. Autism 24(6),1311-1327.
Krouse L. (2022 August 17) Girls are discovering they might have ADHD or be on the autism spectrum from trending TikTok movies. Girls’s Well being.
Leedham A, Thompson AR, Smith R, & Freeth M. (2020) ‘I used to be exhausted attempting to determine it out’: The experiences of females receiving an autism prognosis in center to late maturity. 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 solution to be me’: Autobiographical reflections of autistic adults identified in mid-to-late maturity. Autism 26(6) 1395-1408.
Lupindo BM, Maw A, & Shabalala N. (2023) Late prognosis of autism: Exploring experiences of males identified with autism in maturity. Present Psychology 42 24181–24197.
Could T, Pilkington PD, Younan R, & Williams Ok. (2021) Overlap of autism spectrum dysfunction and borderline character dysfunction: A scientific overview and meta-analysis. Autism Analysis 14(12) 2688-2710.
Nicolaidis C, Raymaker D, Kapp SK, et al. (2025) The AASPIRE practice-based pointers for the inclusion of autistic adults in analysis as co-researchers and examine contributors. Autism: The Worldwide Journal of Analysis and Apply 23(8) 2007-2019.
Stagg SD, & Belcher H. (2019) Dwelling with autism with out realizing: Receiving a prognosis in later life. Well being Psychology and Behavioral Drugs 7(1) 348–361.
