Many autistic adults face extra and important obstacles to prognosis, with detrimental impacts.
Autistic adults who had been undiagnosed in childhood have reported a variety of unfavorable 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). Nonetheless, for a lot of late-diagnosed autistic adults, receiving an autism prognosis 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 obstacles 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 resembling girls and gender minorities. Moreover, overlapping traits between autism and situations resembling Borderline Character Dysfunction (BPD in DSM-5, also called Emotionally Unstable Character 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 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 acceptable strategy for addressing the exploratory analysis questions.
Purposive sampling by way of social media promoting was used to recruit members who had been: English-speaking autistic adults (together with self-diagnosed) with a earlier prognosis of BPD, positioned in the UK.
One-to-one semi-structured interviews had been performed and audio-recorded by way of Microsoft Groups. Interview questions had been knowledgeable by the researchers’ data, a literature evaluation, and people with related lived expertise.
Interpretive phenomenological evaluation (IPA) was used to generate detailed accounts of members’ particular person experiences, which had been then consolidated into group experiential themes.
Outcomes
Ten members had been interviewed (imply age = 34; 90% feminine, 10% questioning gender identification). The common age for receiving a BPD prognosis was 22, and 29 for autism.
Ten group experiential themes had been constructed and sequenced to replicate the journey of members, beginning in formative years:
Struggles in early years
Members all felt completely different from others and struggled to ‘slot in’ from an early age.
Nonetheless, none had 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 had been recognized, within the assigning of this prognosis – however members felt powerless to disagree with a prognosis.
It overshadowed their particular person wants and prevented acceptable care.
Disadvantages of receiving a BPD prognosis
Sturdy social stigma in the direction of BPD, deeply impacted members’ self-perception, creating emotions of disgrace along with dissonance with their lived understanding of themselves.
All members skilled difficulties accessing sufficient psychological healthcare after the prognosis.
When companies had been accessed, they may very well be dangerous and traumatic: members turned healthcare-avoidant, feeling dehumanised and stigmatised.
Autism prognosis
Members who sought an autism prognosis confronted obstacles, 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.
Optimistic elements of autism prognosis
In distinction with the method of in search of prognosis, receiving an autism prognosis 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.
Unfavorable elements of autism prognosis
Though members general skilled their autism prognosis extra favourably than their BPD prognosis, they nonetheless reported expertise of social stigma and ableism in training and healthcare settings.
Reflections on diagnostic labelling
Most paricipants thought of their BPD prognosis was incorrect, relatively than concurrent with autism.
Nonetheless, BPD was described as a tough label to formally “eliminate” (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, members recognized with autism solely, not concurrent BPD.
Conclusions
By exploring the experiences of autistic adults beforehand, and sometimes incorrectly, identified with BPD, this examine revealed the substantial unfavorable impacts of missed prognosis and misdiagnosis.
Members’ felt their autistic variations had 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 unfavorable impacts on their self-concept, bolstered by stigma and traumatic healthcare experiences.
Receiving an eventual autism prognosis 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 larger 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 embody:
Consistency within the chosen analysis paradigm (social constructionism), methodology (interpretive phenomenology and analytical strategy (IPA)); all of that are acceptable for addressing the exploratory analysis query.
The positionality of the analysis workforce was effectively described and consists of related private {and professional} experience.
Research conceptualisation and growth of the subject information had been knowledgeable by people with lived expertise.
The sampling strategy and pattern measurement had been appropriate for IPA.
The inclusion of self-diagnosed autistic members was commendable – as this acknowledges the obstacles 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, persistently supported by illustrative quotes, and complemented by figures that creatively signify the information. The poem in Desk 2 humanises the information in a approach 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 an internet interview, that means that the distinctive views of such people had been probably excluded.
It seems that different interview approaches weren’t provided, which can be a logistical resolution. Nonetheless, 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. Pointers to advertise inclusion of autistic adults in analysis (Nicolaidis C. et al, 2019) recommend lodging resembling:
Sharing the interview schedule upfront.
Offering different interview codecs (e.g., electronic mail or textual content message).
Permitting a help particular person to be current.
These lodging can take away obstacles to participation and enhance illustration of various autistic voices in analysis, and are a suggestion for researchers to think about in future tasks.
Clearly, with a 90% feminine pattern, the researchers might have carried out 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 thought concerning the diagnostic processes undergone by members 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 information 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 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 follow
Missed prognosis and misdiagnosis of autistic adults has garnered substantial consideration recently. Analysis exploring experiences of late autism prognosis has proliferated up to now 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 particular person can have a singular perspective and expertise concerning their prognosis. Nonetheless, 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 folks usually 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 had been missed or dismissed by psychological well being professionals, stopping well timed prognosis and entry to essential care.
Receiving an autism prognosis usually 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 prevailing literature by offering precious 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 scientific follow can’t be understated. Analysis on this subject persistently signifies the need of higher autism coaching amongst psychological well being professionals, nonetheless, this examine illuminates the precise methods wherein gender bias and stereotyping of sure diagnostic labels can affect misdiagnosis and perpetuate hurt.
As such, coaching mustn’t solely intention to enhance scientific data, but it surely 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 help extra nuanced approaches to differential prognosis, 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 identified with BPD and different situations really feel equally evident, as many members felt that they had been uncared for and mistreated in psychological well being settings as a result 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 needs 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 had 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 evaluation. 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 option 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.
Might T, Pilkington PD, Younan R, & Williams Ok. (2021) Overlap of autism spectrum dysfunction and borderline character dysfunction: A scientific evaluation and meta-analysis. Autism Analysis 14(12) 2688-2710.
Nicolaidis C, Raymaker D, Kapp SK, et al. (2025) The AASPIRE practice-based tips for the inclusion of autistic adults in analysis as co-researchers and examine members. Autism: The Worldwide Journal of Analysis and Observe 23(8) 2007-2019.
Stagg SD, & Belcher H. (2019) Residing with autism with out understanding: Receiving a prognosis in later life. Well being Psychology and Behavioral Drugs 7(1) 348–361.
