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.

‘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.

Time and Self-Identity in Later Life

1988 ◽  
Vol 27 (4) ◽  
pp. 293-303 ◽  
Author(s):  
Ryan J. Hulbert ◽  
Willy Lens
Keyword(s):  
Sense Of Self ◽  
Later Life ◽  
Self Identity ◽  
Elderly Individuals ◽  
Case Examples ◽  
Everyday Experiences ◽  
Over Time ◽  
Meaningful Sense

Addressing questions raised by Kastenbaum concerning varied everyday experiences of psychological time, an attempt is made to provide a framework through which such experiences can be interpreted. Raynor's concept of time-linked sources of self-identity is elaborated to include intergenerational-linked and timeless sources of self-identity in the quest to feel good about oneself. Case examples of how eight elderly individuals viewed their futures are used in illustrating how a meaningful sense of self-identity is part of an integration of experiences over time.

Transitions and Brain Injury: A Qualitative Study Exploring the Journey of People with Traumatic Brain Injury

2012 ◽  
Vol 13 (1) ◽  
pp. 72-84 ◽  
Author(s):  
Anne Louise Conneeley
Keyword(s):  
Traumatic Brain Injury ◽  
Brain Injury ◽  
Qualitative Study ◽  
Personal Autonomy ◽  
Sense Of Self ◽  
Phenomenological Approach ◽  
Identity Status ◽  
Transitional Period ◽  
Self Identity ◽  
One Year

This qualitative study aimed to explore transitions from hospital to the home over a period of one year.Methods and procedures: A longitudinal, phenomenological approach was employed and 18 individuals with severe traumatic brain injury, their family members and rehabilitation professionals were interviewed using semistructured interviews, when the person with brain injury was discharged from the ward, after 6 months and again after one year.Results: Themes identified within the data included returning home, getting back to normal, moving forward and the role of rehabilitation in the transitional period. Further subthemes were also identified including issues of life-course disruption, self-identity, status and reconstruction.Conclusions: Data suggested that access to rehabilitation programs employing individualised, contextual interventions following discharge to the home were integral in enabling the transition through to autonomy and independence. Consideration of issues of identity and status can enable a different and potentially important perspective on the experience of transitions for those with brain injury. Reclaiming personal autonomy and control appeared to be central to the reconstruction of a coherent sense of self, enabling a meaningful life after brain injury.

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.

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.

Development of love over time: A qualitative study

2008 ◽  
Author(s):  
Daniel W. Cox ◽  
Abby L. Bjornsen ◽  
Rhea Owens ◽  
Thomas C. Motl
Keyword(s):  
Qualitative Study ◽  
Over Time

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.

Moral Disability, Moral Injury, and the Flight from Vulnerability

2018 ◽  
Author(s):  
Virginia L. Warren
Keyword(s):  
Sense Of Self ◽  
Well Being ◽  
Moral Injury ◽  
Controversial Issues ◽  
Moral Reflection ◽  
Moral Value ◽  
Self Identity ◽  
Moral Conviction ◽  
Moral Importance

This chapter explores the concept of moral disability, identifying two types. The first type involves disabling conditions that distort one’s process of moral reflection. Examples include the incapacity to consider the long-term future, to feel empathy for others, and to be honest with oneself. A noteworthy example of self-deception is systematically denying one’s own—and humanity’s—vulnerability to the power of others, to accidents, and to having one’s well-being linked to that of others and the eco-system. Acknowledging vulnerability often requires a new sense of self. The second type includes incapacities directly resulting from ‘moral injury’—debilitating, self-inflicted harms when one violates a deeply held moral conviction, even if trying to remain true to another moral value. Examining moral disabilities highlights the moral importance of self-identity. More progress may be made on controversial issues if we discuss who we are, how we connect, and how we can heal.

scholarly journals Is social camouflaging associated with anxiety and depression in autistic adults?

2021 ◽  
Vol 12 (1) ◽  
Author(s):  
Laura Hull ◽  
Lily Levy ◽  
Meng-Chuan Lai ◽  
K. V. Petrides ◽  
Simon Baron-Cohen ◽  
...  
Keyword(s):  
Mental Health ◽  
Intellectual Disability ◽  
Social Anxiety ◽  
Online Survey ◽  
Mental Health Problems ◽  
Autistic Traits ◽  
Health Problems ◽  
Autistic People ◽  
Autistic Adults ◽  
Anxiety Depression

Abstract Background There is inconsistent evidence for a clear pattern of association between ‘camouflaging’ (strategies used to mask and/or compensate for autism characteristics during social interactions) and mental health. Methods This study explored the relationship between self-reported camouflaging and generalised anxiety, depression, and social anxiety in a large sample of autistic adults and, for the first time, explored the moderating effect of gender, in an online survey. Results Overall, camouflaging was associated with greater symptoms of generalised anxiety, depression, and social anxiety, although only to a small extent beyond the contribution of autistic traits and age. Camouflaging more strongly predicted generalised and social anxiety than depression. No interaction between camouflaging and gender was found. Limitations These results cannot be generalised to autistic people with intellectual disability, or autistic children and young people. The sample did not include sufficient numbers of non-binary people to run separate analyses; therefore, it is possible that camouflaging impacts mental health differently in this population. Conclusions The findings suggest that camouflaging is a risk factor for mental health problems in autistic adults without intellectual disability, regardless of gender. We also identified levels of camouflaging at which risk of mental health problems is highest, suggesting clinicians should be particularly aware of mental health problems in those who score at or above these levels.

scholarly journals A Qualitative Study on Employees’ Experiences of a Support model for Systematic Work Environment Management

2019 ◽  
Vol 16 (19) ◽  
pp. 3551 ◽  
Author(s):  
Therese Hellman ◽  
Fredrik Molin ◽  
Magnus Svartengren
Keyword(s):  
Focus Group ◽  
Qualitative Study ◽  
Work Environment ◽  
Work Groups ◽  
Comparative Method ◽  
Focus Group Interviews ◽  
Environment Management ◽  
Group Interviews ◽  
Over Time ◽  
Support Model

Background: The aim is to explore how an organisational work environment support model, the Stamina model, influences employees’ work situations and the development of sustainable work systems. Methods: It was a qualitative study with semi-structured, focus-group interviews, including 45 employees from six work groups. Eighteen focus group interviews were conducted over a period of two years. Data were analysed with constant comparative method. Results: The core category, shifting focus from an individual to an organisational perspective of work, illustrated how communication and increased understanding of one’s work tasks changed over time and contributed to deeper focus on the actual operation. These insights were implemented at different time points among the work groups during the two-year process. Conclusions: Our results indicate that working with the model engages employees in the work environment management, puts emphasis on reflections and discussions about the meaning and purpose of the operations and enables a shared platform for communication. These are important features that need to continue over time in order to create a sustainable work system. The Stamina model, thus seems to have the potential to promote productive and healthy work places.

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