scholarly journals Documenting the untold histories of late-diagnosed autistic adults: a qualitative study protocol using oral history methodology

BMJ Open ◽  
2020 ◽  
Vol 10 (5) ◽  
pp. e037968
Author(s):  
Elizabeth Pellicano ◽  
Wenn Lawson ◽  
Gabrielle Hall ◽  
Joanne Mahony ◽  
Rozanna Lilley ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Research Ethics ◽  
Oral History ◽  
Life Histories ◽  
Institutional Research ◽  
Autism Diagnosis ◽  
Human Research Ethics ◽  
Autistic People ◽  
Autistic Adults ◽  
Oral History Interview

IntroductionReceiving a diagnosis of autism in adulthood is increasingly common for a subset of individuals who were either misdiagnosed in childhood or missed out on a diagnosis altogether. This qualitative study, coproduced with autistic people, invites late-diagnosed autistic adults to share their life histories to (1) understand better the consequences of living without a diagnosis, (2) elucidate what precipitates an autism diagnosis in mid-to-late adulthood and (3) identify the perceived impact of receiving that diagnosis.Methods and analysisOral histories have been a successful way to uncover overlooked and marginalised voices. We therefore adopt qualitative, oral history methodology in this study to understand these adults’ experiences, especially of living in an era when autism was not well known. We will recruit 24 participants who will (1) have been born before 1975, (2) have received a clinical, autism diagnosis after the age of 35, (3) be English-speaking and (4) have spent most of their childhood and adulthood living in Australia. Participants will take part in four sessions, including the main, qualitative, oral history interview, through a range of possible formats to facilitate inclusion. The interview data will be analysed using reflexive thematic analysis.Ethics and disseminationThe protocol has received institutional research ethics approval from Macquarie University’s Human Research Ethics Committee (Ref.: 52019556310562). This study will yield understanding of the life experiences of autistic adults, especially middle-aged and older Australians, should inform more effective diagnostic practices and provide insight into the key factors that might promote resilience and enhance quality of life in autistic people. The findings will be disseminated to academic and clinical audiences through journal articles and conference presentations and to the autistic and autism communities through accessible reports. The interviews will also be prepared for digital archiving, which will enable ongoing access for future generations and communities.

‘A way to be me’: Autobiographical reflections of autistic adults diagnosed in mid-to-late adulthood

Autism ◽  
2021 ◽  
pp. 136236132110506
Author(s):  
Rozanna Lilley ◽  
Wenn Lawson ◽  
Gabrielle Hall ◽  
Joanne Mahony ◽  
Hayley Clapham ◽  
...  
Keyword(s):  
Oral History ◽  
Positive Impact ◽  
Sense Of Self ◽  
Self Awareness ◽  
Autism Diagnosis ◽  
Late Adulthood ◽  
Autistic People ◽  
Autistic Adults ◽  
Autistic Identity ◽  
Over Time

In this article, we report on an oral history study documenting the lives of autistic adults in Australia. This qualitative study, co-produced with autistic researchers, offers insight into the lived experiences of autistic adults diagnosed in mid-to-late adulthood. Oral history methodology was utilised to understand the experiences of autistic adults who grew up in an era before autism was well-known. The 26 interviewees were born before 1975, receiving a clinical autism diagnosis after age 35 years. All interviews were conducted by autistic researchers, transcribed and thematically analysed by a team of autistic and non-autistic researchers using the six-step process outlined by Braun and Clarke. We identified four themes relating to perceptions of the self: being different, exploring identity, the suffering self and being Autistic. Some interviewees reported a direct relationship between trauma, negative self-conceptions and suffering. For most, formal diagnosis had positive impacts on sense of self, contributing to a greater focus on strengths. Contra research suggesting autistic impairments in self-awareness, these interviewees demonstrated a deep capacity for self-reflection, highlighting the variability of autistic lives and the socio-historical contexts that shape individual biographies, including experiences of stigma and discrimination as well as the empowering potential of identifying as autistic. Lay abstract Using oral history methods, we interviewed and recorded 26 autistic adults in Australia about their life history. We wanted to better understand interviewees’ self-reflections about their lives. The interviewers were autistic researchers and the interviews were analysed by autistic and non-autistic researchers. All of the adults we interviewed were born before 1975 and formally identified as autistic after age 35 years. This group of people is sometimes referred to as ‘late-diagnosed autistic adults’. In general, there is not much research done about autistic adults and even less is known about those diagnosed late in life. In this article, we explore what these adults said about their sense of self and how that changed over time. These autistic adults told us about many negative experiences, including trauma, which had shaped how they think about themselves. For most, autism diagnosis had a very positive impact on their sense of self, allowing them to understand more about their own past and to feel good about their autistic identity. Previously some researchers have said that autistic people have a limited or impaired sense of self. Instead, our results show some autistic people can actually reflect deeply on their lives and their changing sense of self-identity over time.

scholarly journals The Relationship Between Religion, Illness and Death in Life Histories of Family Members of Children With Life-Threatening Diseases

2010 ◽  
Vol 18 (2) ◽  
pp. 156-162 ◽  
Author(s):  
Regina Szylit Bousso ◽  
Taís de Souza Serafim ◽  
Maira Deguer Misko
Keyword(s):  
Qualitative Study ◽  
Oral History ◽  
Life Histories ◽  
Family Members ◽  
Three Dimensions ◽  
Methodological Framework ◽  
Power Development ◽  
Healing Power ◽  
Life Threatening ◽  
The Relationship

This qualitative study aimed to get to know the relationship between the experiences of families of children with a life-threatening disease and their religion, illness and life histories. The methodological framework was based on Oral History. The data were collected through interviews and the participants were nine families from six different religions who had lived the experience of having a child with a life-threatening disease. The interviews, held with one or two family members, were transcribed, textualized and, through their analysis, the Vital Tone was elaborated, representing the moral synthesis of each narrative. Three dimensions of spirituality were related to illness and death in their life histories: a Higher Being with a healing power; Development and Maintenance of a Connection with God and Faith Encouraging Optimism. The narratives demonstrated the family's search to attribute meanings to their experiences, based on their religious beliefs.

scholarly journals Exploring Autistic Adults’ Psychosocial Experiences Affecting Beginnings, Continuity, and Change in Camouflaging Over Time- A Qualitative Study

2021 ◽  
Author(s):  
Beatrice Loo ◽  
Truman Teo ◽  
Melanie Liang ◽  
Dawn-Joy Leong ◽  
Diana Weiting Tan ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Sense Of Self ◽  
Self Identity ◽  
Psychosocial Experiences ◽  
Continuity And Change ◽  
Autistic People ◽  
Psychosocial Influences ◽  
Societal Level ◽  
Autistic Adults ◽  
Over Time

Many autistic people develop camouflaging strategies to mask or compensate for their underlying autism-related differences in order to get by in predominantly non-autistic societies. Autistic adults have described camouflaging as a “lifetime of conditioning to act normal”, suggesting that camouflaging develops over the autistic person’s lifespan. Yet, very little is so far known about the course of camouflaging motivations and behaviours over time or the psychosocial factors that may influence autistic people’s camouflaging trajectories. In an exploratory qualitative study within an Asian sociocultural context, we interviewed 11 Singaporean autistic adults in depth about their camouflaging experiences throughout their lives. We aimed to better understand the beginnings, continuity and changes in their camouflaging motivations and strategies over time, and related psychosocial influences. Interviews were transcribed verbatim and thematically analysed. Twenty-six themes were identified, and were organised across four phases - pre-camouflaging, beginnings, continuity, and change over time. The earliest camouflaging motivations were predominantly relational, linked to a negative self-identity shaped by adverse social experiences. Strategies were increasingly complex and better integrated into one’s sense of self over time, or more selectively engaged in. Our findings highlight the role of psychosocial pressures precipitating camouflaging. They also emphasise the need for both individual psychological and societal-level changes to move from pathologizing autistic differences to acceptance, understanding, and inclusion, so as to reduce psychosocial pressures on autistic people of all ages to camouflage.

scholarly journals A qualitative study of autism services and supports in Singapore: Perspectives of service providers, autistic adults and caregivers

Autism ◽  
2021 ◽  
pp. 136236132110161
Author(s):  
Emeline Han ◽  
Melisa Mei Jin Tan ◽  
Laura Crane ◽  
Helena Legido-Quigley
Keyword(s):  
Qualitative Study ◽  
Service Providers ◽  
Complex Nature ◽  
Structured Interviews ◽  
Related Services ◽  
Collective Effort ◽  
Autistic People ◽  
Flexible Supports ◽  
Autistic Adults ◽  
Services And Supports

The lifelong and complex nature of autism necessitates an array of services and supports spanning across different sectors and providers at different life stages of an autistic individual. However, research has shown that autistic individuals and their families often experience barriers accessing the autism-related services and supports that they need. This is the first qualitative study to explore the provision and coordination of autism services and supports in Singapore from the perspectives of service providers, autistic adults and caregivers. Semi-structured interviews with 21 participants revealed three main themes: (1) improving access to autism-specific services, (2) creating flexible supports in an inclusive environment and (3) addressing stigma and changing societal attitudes. Our findings suggest that Singapore may have achieved rapid growth in autism services, but broader social structures may be slower to change. To better support autistic individuals in society, autistic voices need to be amplified and a collective effort is needed to achieve a paradigm shift from impairment to capability. Lay abstract Because autism is a lifelong and complex condition, autistic people may need a range of supports cutting across different sectors (e.g. health, education and social care) at different stages of their lives. Studies in some countries have shown that autistic people and their families face difficulties accessing the services they need, but no research has been done on this topic in Singapore. To start addressing this gap, we interviewed 21 service providers, autistic adults and caregivers/parents of autistic children to find out their perceptions and experiences of autism services and supports in Singapore. Our participants told us that beyond improving access to autism-specific services, they also hoped to see more flexible supports in an inclusive environment and a broader change in societal attitudes. This study highlights that autism service provision should be informed by autistic voices and not only focus on impairment but also recognise the strengths of autistic people alongside their very real needs. The whole of society – including policymakers, professionals, employers, educators, families and autistic people themselves – needs to work together to fight autism stigma and discrimination.

Camouflaging in non-autistic adults is associated with poorer mental health

2019 ◽  
Author(s):  
Mark Somerville ◽  
Sarah E. MacPherson ◽  
Sue Fletcher-Watson
Keyword(s):  
Mental Health ◽  
Executive Function ◽  
Autistic Traits ◽  
Self Report ◽  
Linear Regression Models ◽  
Mental Health Symptoms ◽  
Health Symptoms ◽  
Autistic People ◽  
Autistic Adults ◽  
The Relationship

Camouflaging is a frequently reported behaviour in autistic people, which entails the use of strategies to compensate for and mask autistic traits in social situations. Camouflaging is associated with poor mental health in autistic people. This study examined the manifestation of camouflaging in a non-autistic sample, examining the relationship between autistic traits, camouflaging, and mental health. In addition, the role of executive functions as a mechanism underpinning camouflaging was explored. Sixty-three non-autistic adults completed standardised self-report questionnaires which measured: autistic traits, mental health symptoms, and camouflaging behaviours. In addition, a subset (n=51) completed three tests of executive function measuring inhibition, working memory, and set-shifting. Multiple linear regression models were used to analyse data. Results indicated that autistic traits are not associated with mental health symptoms when controlling for camouflaging, and camouflaging predicted increased mental health symptoms. Camouflaging did not correlate with any measure of executive function. These findings have implications for understanding the relationship between autistic traits and mental health in non-autistic people and add to the growing development of theory and knowledge about the mechanism and effects of camouflaging.

Case Study: Memory Work with Children Affected by HIV/AIDS in South Africa

2012 ◽  
Author(s):  
Philippe Denis
Keyword(s):  
South Africa ◽  
Oral History ◽  
Narrative Therapy ◽  
Life Story ◽  
Early Years ◽  
Memory Work ◽  
Aids Epidemic ◽  
Story Work ◽  
Oral History Interview ◽  
Hiv Aids

This article focuses on working with children affected by HIV/AIDS in South Arica. In the early years of the AIDS epidemic, relief organizations focused their efforts on the material needs of children, but their psychological and emotional needs are no less important. Recognizing this, the Sinomlando Centre for Oral History and Memory Work in Africa, a research and community development center located at the University of KwaZulu-Natal, in Pietermaritzburg South Africa, has pioneered a model of psychosocial intervention for children in grief—particularly but not exclusively in the context of HIV/AIDS. This model uses the methodology of oral history in a novel manner, combined with other techniques such as life story work and narrative therapy. During the early years of the project, the model followed for the family visits was the oral history interview. A discussion on caregiver as the narrator and skills required in memory work especially in these cases concludes this article.

scholarly journals Less Illusion of a Just World in People with Formally Diagnosed Autism and Higher Autistic Traits

2020 ◽  
Author(s):  
Alex Bertrams
Keyword(s):  
Information Processing ◽  
Individual Differences ◽  
Locus Of Control ◽  
Autistic Traits ◽  
Well Being ◽  
Autism Diagnosis ◽  
Just World ◽  
External Locus ◽  
General Belief ◽  
Autistic People

AbstractPeople differ in how strongly they believe that, in general, one gets what (s)he deserves (i.e., individual differences in the general belief in a just world). In this study (N = 588; n = 60 with a formal autism diagnosis), whether or not autistic people and those with high autistic traits have a relatively low general belief in a just world is examined. The results revealed the expected relationship between autism/higher autistic traits and a lower general belief in a just world. In a subsample (n = 388), personal belief in a just world, external locus of control, and self-deception mediated this relationship. These findings are discussed in terms of autistic strengths (less biased information processing) and problems (lowered well-being).

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