Sense-making narratives of autistic women diagnosed in adulthood: a systematic review of the qualitative research

Figures & data

Figure 1. PRISMA diagram for systematic review

Table 1. Inclusion and exclusion criteria.

	Inclusion	Exclusion
Period of publication	Between 1st January 1943 and 21^st August 2020
Study design/ type	Qualitative studies Mixed method studies	Publication types without original data, e.g. expert opinions, clinical reports, letters, editorials, comments, reviews, books, book chapters, book reviews, blogs and social media posts, news items, or articles not describing studies on the lived experience of adult women diagnosed with ASD without ID or AS aged >18 years. Quantitative studies (e.g. randomised controlled trials, comparative, case-control, observational, and cross-sectional studies) Conference abstracts and dissertations
Study population	Women with a diagnosis of ASD without ID or AS aged >18 years	Girls or adolescents aged ≤18 years Women not formally diagnosed in adulthood
Subject matter/focus	Lived experience of women aged >18 years before being diagnosis with ASD without ID or AS, of the diagnostic process itself and/or life post-diagnosis	Proposed cause(s), medications, interventions, therapies or ‘cures’ Evaluation of methods or diagnostic/ screening tools Lab-based, animal, genetic, biochemical, neurological or molecular studies Accounts given by parents or carers Studies not using primary data Comparison studies with non-autistic controls or between genders Studies where one cannot differentiate findings by gender and age group of participants

Table 3. .

Article	Country	Participant’s pseudonym	Age Range (From)	Age Range (To)	Age at Diagnosis (From)	Age at Diagnosis (To)
Bargiela, Steward, and Mandy 2016	UK	P01	23	26	19	22
		P03	27	30	27	30
		P05	22	26	22	25
		P06	27	30	23	26
		P07	19	22	19	22
		P08	22	26	19	22
		P09	27	30	19	22
		P10	27	30	23	26
		P11	27	30	27	30
		P14	27	30	23	26
Griffith et al. 2012	UK	Brooke	45	45	35	35
		Rebecca	54	54	45	45
		Sheila	57	57	49	49
Hurlbutt and Chalmers 2004	US	Daina	56	56	52	52
		Rosalind	43	43	38	38
Kanfiszer, Davies, and Collins 2017	UK	Danielle	20	59	20	59
		Emma	20	59	20	59
		Fay	20	59	20	59
		Gemma	20	59	20	59
Krieger et al. 2012	Switzerland	Celestine	30	30	28	28
		Hannah	34	34	32	32
Leedham et al. 2020	UK	Alice	43	64	40	62
		Celia	43	64	40	62
		Elizabeth	43	64	40	62
		Hannah	43	64	40	62
		Kate	43	64	40	62
		Lily	43	64	40	62
		Marie	43	64	40	62
		Merrell	43	64	40	62
		Mia	43	64	40	62
		Olivia	43	64	40	62
		Ruby	43	64	40	62
Smith and Sharp 2013	UK	Lucy	49	49	47	47
		Rebecca	25	25	23	23
		Ruth	30	30	29	29
Stagg and Belcher 2019	UK	Brenda	52	54	unknown	unknown
		Debra	52	54	unknown	unknown
		Linda	52	54	unknown	unknown
		Mary	52	54	unknown	unknown
Webster and Garvis 2017	Australia	Janelle	28	55	unknown	unknown
		Judy	28	55	unknown	unknown
		Julie	28	55	unknown	unknown
		Mary	28	55	unknown	unknown
		Michelle	28	55	unknown	unknown
		Morgan	28	55	unknown	unknown
		Patty	28	55	unknown	unknown
		Peggy	28	55	unknown	unknown
		Robin	28	55	unknown	unknown
		Susan	28	55	unknown	unknown
		Terry	28	55	unknown	unknown

Table 2. Characteristics of the primary research articles included (n=9).

Author(s)	Title of article	Country	Methodology	Research design/conceptual framework	No. participants in article	Women diagnosed in adulthood	Number of themes	Number of subthemes	Themes
Bargiela, Steward, and Mandy (2016)	The experiences of late-diagnosed women with autism spectrum conditions: an investigation of the female autism phenotype	UK	Framework analysis	This study investigated the female autism phenotype and its impact upon the under-recognition of autism in girls and women in clinical practice. Framework analysis was used to yield hypotheses about this phenotype, to generate new ideas and deepen understanding of key concepts such as camouflaging, and to promote the development of measures to capture both female and male manifestations of autism.	14 (all women but two diagnosed in childhood and two did not contribute in findings)	10	4	19	You’re not autistic: Labelled with non-autistic diagnosis; Unhelpful professional sterotypes of autism; Quiet at school; so went unnoticed - ‘I should have burnt more cars’ ; Misunderstood, unsupported or blamed by teachers; The costs of a late diagnosis. Pretending to be ‘normal’: ‘Wearing a mask’; Learning social behavours from TV, books and magazines; Social mimicry; The costs of masking. Passive to assertive: Please, appease, avoid conflict; Entrapment in abusive relationships or risky situations; Victim of sexual abuse; Learning to be assertive. Forging an identity as a women with ASD: Societal pressures - what is expected of young women; Friendships - uncertainty and intensity; Hard to be friends with neurotypical girls; Easier to be friends with boys; Friendships and support online; Interests define identity and self-confidence.
Griffith et al. (2012)	I just don’t fit anywhere’: support experiences and future support needs of individuals with Asperger syndrome in middle adulthood	UK	IPA	The research explored what autistic people aged 35 years and over thought of their previous and current support. The researchers used IPA to get an ‘insider’s perspective’ and to explore how the participants made sense of their world.	11 (seven men, of whom only six diagnosed, one women undiagnosed)	3	3	0	Some days I do stuggle’ - living with AS; ‘They don’t expect you to have problems with things’ - employment issues; ‘I just fall through the gaps between’ - experiences with mainstream support.
Hurlbutt and Chalmers (2004)	Employment and adults with Asperger syndrome	US	Content analysis	This paper was the earliest publication of the nine papers used in the review. Its purpose was to provide information about the participant’s employment issues and recommendations for preparing autistic people for successful job experiences. Unfortunately, the paper did not discuss the research design or methodology used in the study.	6 (three men and one did not contribute to findings)	2	3	0	Adults wit AS experience frequent unemployment and underemployment situations; Several factors affect employability, including social skills, communication and sensory issues; Recommendations for aiding success in the workplace.
Kanfiszer, Davies, and Collins (2017)	I was just so different’: The experiences of women diagnosed with an autism spectrum disorder in adulthood in relation to gender and social relationships	UK	Multi-stage narrative analysis	This study used narrative analysis to reveal the life stories of autistic women and to extend existing conceptualisations of autistic experience to include socially and culturally located factors. Its purpose was to enable the marginalised voices of autistic women to be heard and to understand the various multifaceted aspects of their experiences.	7 (although three had ID)	4	2	5	Gender identity: ‘I was just so different’; ‘I think there’s some sort of gender identity thing’; ‘I never had any mothering instincts’. Social relationships: ‘When I try, the conversation just goes dead’; ‘People don’t want to know me’.
Krieger et al. (2012)	Becoming a member of the work force: perceptions of adults with Asperger Syndrome	Switzerland	Narrative analysis	The purpose of this study was to gain in-depth knowledge about how autistic inviduals assign meaning to contextual and influential factors that occurred throughout their childhood and adolescence and how these factors may have enabled or hindered their participation as adults in competitive employment. The temporal-biographical aspects of the study meant that a hermeneutic, narrative approach was used in the research design, based on Paul Ricoeur’s theory of interpretation.	6 (four men)	2	4	9	Social context - To feel socially secure and be familiar with social environments: Mom left me alone without accusations; Through her I met other children in the neighbourhood. Cultural context - To achieve cultural competence: Teachers are for learning and not for relationships; I am open for new ideas but in the end I must experience them as my own; This is not my world but I know the rules of the game; I like my job but I need enough to do to not feel bored. Physical context - To be protected or offended: Workingbehind a window in the post office protected me. Temporal context - Receiving and disclosing a diagnosis: It became clear - my strange needs are legitimate; There is a subtle black and white thinking in Swiss society.
Leedham et al. (2020)	‘I was exhausted trying to figure it out’: The experiences of females receiving an autism diagnosis in middle to late adulthood	UK	IPA	This study used IPA in order to focus on the subjective accounts of specific lived experiences of autistic women, including their response to and interpretation of these experiences. The data was analysed via an in-depth iterative process where the researchers engaged in a ‘double hermeneutic’ process, making sense of how individuals make sense of their world.	11	11	4	10	A hidden condition: Pretending to be ‘normal’ and fitting in; Mental health and mislabelling. The process of acceptance: Initial reactions and search for understanding; Reliving life through a new lens; Grief and reflections on the past. Post diagnostic impact of others: Initial reaction of others; Stereotyped assumptions. A new identity on the autism spectrum: Negotiating relationships, connections and community; Changing wellbeing and views of the self; The meaning of diagnosis.
Smith and Sharp (2013)	Fascination and isolation: a grounded theory exploration of unusual sensory experiences in adults with Asperger syndrome	UK	Grounded theory	Using a modified Grounded Theory methodology, the study aimed to generate a model describing the nature of the relationship between unusual sensory perception and their effects on the person’s internal experience, social life and daily functioning. Semi-structured interviews were conducted with Instant Messaging software. A model was generated revealing how unusal sensory experiences affect the lives of autistic people and describing the coping strategies utilised.	9 (six men)	3	9	18	Heightened senses. Sensory stress: Fear/anger; Attach/escape; Avoidance. Moderating factors: Single versus many inputs; Low intensity versus high intensity; Order versus chaos; Calm versus stressed. The stress avalanche. Coping strategies: Blocking out other inputs; Dampeners; Creating order; Calming strategies. Other people: Source of sensory stress; Negative interactions with others; Positive interactions with others. Isolation. Self-acceptance. Fascination: Pleasurable/calming; Skills/abilities; Long-term pursuits; Distracting.
Stagg and Belcher (2019)	Living with autism without knowing: receiving a diagnosis in later life	UK	Thematic analysis	Interviews were conducted using the free-associative narrative interview technique, where the interviewee was able to guide the direction of the interview, thus allowing the focus and agenda of the interview to change depending on their own experience. Therefore the autistic participants had the freedom to take the interview in the direction they wished. The resulting transcripts were analysed using thematic analysis.	9 (four men and one did not contribute to findings)	4	5	0	Early signs of ASC: Behavioural manifestions of ASD; Education; Experiences in youth. Awareness of being different: Disability; Positive aspects of having ASC; Being different; Ways of seeing the world; Fitting in; Recognising or failure to recognise ASD; Family concerns; Relationship problems; Receiving a diagnosis: Revelation; Negatives of diagnosis; Relief; Stress. The usefulness of a diagnosis: Emotion; The future; Advantages of a late diagnosis; Happiness; Creativity; Confidence; Self awareness; Working life; Work colleagues. Support and coping: Getting older; Modern technology; Social media; Specific ASD help from the authorities; Health care; Support; Government departments.
Webster and Garvis (2017)	The importance of critical life moments: An explorative study of successful women with autism spectrum disorder	Australia	Narrative-themed analysis	This study explored the women’s experience from a social constructionist perspective, emphasising the social processes by which they developed their social reality, and knowledge about that reality, in an ongoing way during interaction with others. The findings captured the emotional nature of the lived experiences of the autistic women involved as they reflected on being successful.	11	11	4	0	Agents of change. Belief of others in their capability. Changed identity after diagnosis. Mentor to others.

Bargiela, S., R. Steward, and W. Mandy. 2016. “The Experiences of Late-Diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype.” Journal of Autism and Developmental Disorders 46 (10): 3281–3294. doi:10.1007/s10803-016-2872-8.

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Griffith, G. M., V. Totsika, S. Nash, and R. P. Hastings. 2012. “ ‘I just don’t fit anywhere’: support experiences and future support needs of individuals with Asperger syndrome in middle adulthood.” Autism : The International Journal of Research and Practice 16 (5): 532–546. doi:10.1177/1362361311405223.

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Hurlbutt, Karen., and Lynne. Chalmers. 2004. “Employment and Adults with Asperger Syndrome.” Focus on Autism and Other Developmental Disabilities 19 (4): 215–222. doi:10.1177/10883576040190040301.

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Kanfiszer, L., F. Davies, and S. Collins. 2017. “‘I was just so different’: The Experiences of Women Diagnosed with an Autism Spectrum Disorder in Adulthood in Relation to Gender and Social relationships.” Autism: The International Journal of Research and Practice 21 (6): 661–669. doi:10.1177/1362361316687987.

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Krieger, B., A. Kinebanian, B. Prodinger, and F. Heigl. 2012. “Becoming a Member of the Work Force: Perceptions of Adults with Asperger Syndrome.” Work (Reading, Mass.) 43 (2): 141–157. doi:10.3233/WOR-2012-1392.

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Leedham, A., A. R. Thompson, R. Smith, and M. Freeth. 2020. “ ‘I Was Exhausted Trying to Figure It Out’: The Experiences of Females Receiving an Autism Diagnosis in Middle to Late Adulthood.” Autism : The International Journal of Research and Practice 24 (1): 135–146. doi:10.1177/1362361319853442.

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Smith, R. S., and J. Sharp. 2013. “Fascination and Isolation: A Grounded Theory Exploration of Unusual Sensory Experiences in Adults with Asperger Syndrome.” Journal of Autism and Developmental Disorders 43 (4): 891–910. doi:10.1007/s10803-012-1633-6.

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Stagg, S. D., and H. Belcher. 2019. “Living with Autism without Knowing: Receiving a Diagnosis in Later Life.” Health Psychology and Behavioral Medicine 7 (1): 348–361. doi:10.1080/21642850.2019.1684920.

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Webster, A. A., and S. Garvis. 2017. “The Importance of Critical Life Moments: An Explorative Study of Successful Women with Autism Spectrum Disorder.” Autism : The International Journal of Research and Practice 21 (6): 670–677. doi:10.1177/1362361316677719.

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