Many autistic adults face extra and vital limitations to prognosis, with detrimental impacts.
Autistic adults who had been undiagnosed in childhood have reported a spread of destructive 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 aid, self-acceptance, and improved administration of psychological and bodily well being circumstances (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 might contribute to autistic traits being missed or dismissed (Crane L. et al, 2019), particularly in traditionally under-diagnosed teams akin to girls and gender minorities. Moreover, overlapping traits between autism and circumstances akin to Borderline Character Dysfunction (BPD in DSM-5, often known as Emotionally Unstable Character Dysfunction in ICD-10) might 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 research, framed inside a social constructionist paradigm – an applicable method for addressing the exploratory analysis questions.
Purposive sampling by way of social media promoting was used to recruit contributors 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 overview, and people with related lived expertise.
Interpretive phenomenological evaluation (IPA) was used to generate detailed accounts of contributors’ particular person experiences, which had been then consolidated into group experiential themes.
Outcomes
Ten contributors had been interviewed (imply age = 34; 90% feminine, 10% questioning gender id). 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 contributors, beginning in adolescence:
- Struggles in early years
- Contributors all felt totally 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
- Contributors 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 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 satisfactory psychological healthcare after the prognosis.
- When providers had been accessed, they may very well be dangerous and traumatic: contributors turned healthcare-avoidant, feeling dehumanised and stigmatised.
- Autism prognosis
- Contributors who sought an autism prognosis confronted limitations, together with professionals not believing them, delayed referrals, and lengthy wait occasions.
- Analysis 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 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 applicable lodging in training and employment.
- Contributors expressed experiencing much less ‘blame’ for his or her lived expertise, and extra validated in expressing their well being issues.
- Damaging 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 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 troublesome label to formally “eliminate” (P10).
- Serving to others
- Contributors 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 solely, not concurrent BPD.
Conclusions
By exploring the experiences of autistic adults beforehand, and sometimes incorrectly, identified with BPD, this research revealed the substantial destructive impacts of missed prognosis and misdiagnosis.
Contributors’ felt their autistic variations had been mischaracterised as BPD by psychological well being professionals because of gender bias, stereotypes and insufficient data about autism. Receiving a prognosis of BPD had profound destructive 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 applicable help. Tamilson and colleagues (2024) “name for improved autism coaching for psychiatrists” to forestall misdiagnosis of autistic adults.
This research provides to the name for psychiatrists to have larger diagnostic coaching for autism in adults.
Strengths and limitations
Strengths
This research responds to a transparent group want and considers advantages for the autistic group from the outset.
Strengths of the research embody:
- Consistency within the chosen analysis paradigm (social constructionism), methodology (interpretive phenomenology and analytical method (IPA)); all of that are applicable for addressing the exploratory analysis query.
- The positionality of the analysis group was properly described and consists of related private {and professional} experience.
- Examine conceptualisation and growth of the subject information had been knowledgeable by people with lived expertise.
- The sampling method and pattern dimension had 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 research goals and findings.
The ensuing themes are detailed, persistently supported by illustrative quotes, and complemented by figures that creatively symbolize the info. The poem in Desk 2 humanises the info in a manner that’s uncommon to see in analysis.
Limitations
Tamilson and colleagues acknowledge that the info assortment method might 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 had been seemingly excluded.
It seems that various interview approaches weren’t supplied, which can be a logistical determination. Nonetheless, the authors don’t describe every other 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 akin to:
- Sharing the interview schedule upfront.
- Offering various interview codecs (e.g., electronic 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 advice for researchers to contemplate in future initiatives.
Clearly, with a 90% feminine pattern, the researchers might have achieved extra to incorporate a broader vary of individuals on this research.
As this challenge was performed by way of self-selected survey participation, not a lot is understood relating to 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 research to additionally search experiential qualitative information 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, preserving in thoughts the extra various inhabitants coming to in search of autism diagnoses in maturity.
This research captures the lived expertise of some autistic adults. The expertise of suppliers stays to be captured.
Implications for apply
Missed prognosis and misdiagnosis of autistic adults has garnered substantial consideration currently. Analysis exploring experiences of late autism prognosis has proliferated prior 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 individual can have a novel perspective and expertise relating to their prognosis. Nonetheless, the above literature reveals some widespread insights, which mirror the findings of this research by Tamilson and colleagues, in addition to my very own expertise as a late-diagnosed autistic girl:
- Undiagnosed autistic individuals typically really feel totally different to others from a younger age, however might 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 crucial care.
- Receiving an autism prognosis typically brings a way of validation, aid, group, self-acceptance, and entry to lodging and applicable care.
This research by Tamilson and colleagues extends upon the present literature by offering worthwhile 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 apply can’t be understated. Analysis on this subject persistently signifies the need of higher autism coaching amongst psychological well being professionals, nonetheless, this research 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 intention to enhance scientific data, however it 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, might help extra nuanced approaches to differential prognosis, stopping mislabelling and insufficient care.
Although the rationale for this research is framed by way of the attitude of social justice for the autistic group, the implications for these identified with BPD and different circumstances really feel equally evident, as many contributors felt that they had been uncared for and mistreated in psychological well being settings because of structural stigma in the direction of BPD. No matter their diagnostic label, everybody deserves entry to affirming psychological healthcare.
Stigma is usually a big barrier to accessing well timed and applicable psychological healthcare, which ought to be accessible 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 research. 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) Analysis 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 making an attempt 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 approach 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 Okay. (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 tips for the inclusion of autistic adults in analysis as co-researchers and research contributors. Autism: The Worldwide Journal of Analysis and Follow 23(8) 2007-2019.
Stagg SD, & Belcher H. (2019) Dwelling with autism with out understanding: Receiving a prognosis in later life. Well being Psychology and Behavioral Medication 7(1) 348–361.
