scholarly journals ‘I was exhausted trying to figure it out’: The experiences of females receiving an autism diagnosis in middle to late adulthood

Autism ◽  
2019 ◽  
Vol 24 (1) ◽  
pp. 135-146 ◽  
Author(s):  
Alexandra Leedham ◽  
Andrew R Thompson ◽  
Richard Smith ◽  
Megan Freeth
Keyword(s):  
Interpretative Phenomenological Analysis ◽  
Well Being ◽  
Autism Spectrum ◽  
The Self ◽  
Autism Spectrum Condition ◽  
Structured Interviews ◽  
Late Adulthood ◽  
Spectrum Condition ◽  
Fitting In ◽  
The Impact

Females often receive autism spectrum condition diagnoses later than males, leaving needs misunderstood. This study aimed to explore the lived experiences of female adults diagnosed with an autism spectrum condition in middle to late adulthood. Eleven autistic females diagnosed over the age of 40 years completed semi-structured interviews, analysed using Interpretative Phenomenological Analysis. Four superordinate themes emerged: A hidden condition (pretending to be normal and fitting in; mental health and mislabelling), The process of acceptance (initial reactions and search for understanding; re-living life through a new lens), The impact of others post-diagnosis (initial reactions; stereotyped assumptions), and A new identity on the autism spectrum (negotiating relationships, connections and community; changing well-being and views of the self; the meaning of diagnosis). Findings highlight several factors not previously identified that affect late diagnosis in females, including widespread limited understandings of others. Diagnosis was experienced by several participants as facilitating transition from being self-critical to self-compassionate, coupled with an increased sense of agency. Participants experienced a change in identity that enabled greater acceptance and understanding of the self. However, this was painful to adjust to at such a late stage.

‘You don’t look autistic’: A qualitative exploration of women’s experiences of being the ‘autistic other’

Autism ◽  
2021 ◽  
pp. 136236132199372
Author(s):  
Kate Seers ◽  
Rachel C Hogg
Keyword(s):  
Lived Experiences ◽  
Well Being ◽  
Autism Spectrum ◽  
Social Expectations ◽  
Autism Spectrum Condition ◽  
Women’S Experiences ◽  
Women's Experiences ◽  
Spectrum Condition ◽  
The Impact ◽  
Experiences Of Women

There is currently a paucity of literature exploring the experiences of women on the autism spectrum. It is imperative research is conducted to capture the experiences of women on the autism spectrum and ensure appropriate support is provided to this cohort. Drawing upon a social constructionist framework, this qualitative research study sought to understand how psychological and socio-cultural constructions of autism spectrum condition and gender influence the well-being of women on the autism spectrum. Eight participants engaged in a semi-structured interview, with thematic analysis conducted to demonstrate the impact of gender roles and social expectations on the women’s identity and autism spectrum condition expression. The research highlighted the changing understandings of autism spectrum condition across a woman’s lifespan and the process and impact of resisting hegemonic autism spectrum condition categorisation. The findings demonstrate that social constructions of gender and stereotypical understandings of autism spectrum condition, which prioritise a deficit, medical model, have significant consequences for women’s well-being and subjectivity. The women experienced challenging formative years, but with diagnosis and the evolution and acceptance of their identities, they were able to resist negative narratives of autism spectrum condition, embrace their strengths and develop adaptive coping strategies. It is hoped this article generates insights for societal and clinical recognition to better support women on the autism spectrum. Lay abstract Most autism spectrum condition research addresses the neurological and biological causes of autism spectrum condition, focusing upon deficits associated with autism spectrum condition and behavioural interventions designed to minimise these deficits. Little is known about the lived experiences of adult women on the autism spectrum and how they navigate social expectations around gender, autism spectrum condition and gendered understandings of autism spectrum condition. The lived experiences of eight women on the AS will be shared here, with attention to how gendered expectations influence women’s experiences of autism spectrum condition, their sense of self and well-being. Findings showed these women struggled to reconcile the expectations of others, particularly early in life. The women had difficultly conforming to stereotypical ideals of femininity, yet as they aged, they felt less need to conform, valuing their unique style and behaviours. The women also rejected deficit-oriented descriptions of autism spectrum condition generated by the medical community, preferring to focus on their strengths and unique characteristics. It is hoped this article helps psychologists and the wider community to understand and meet the needs of women on the AS.

scholarly journals When the mask comes off: Mothers’ experiences of parenting a daughter with autism spectrum condition

Autism ◽  
2020 ◽  
Vol 24 (6) ◽  
pp. 1546-1556
Author(s):  
James Anderson ◽  
Charles Marley ◽  
Karri Gillespie-Smith ◽  
Leonie Carter ◽  
Ken MacMahon
Keyword(s):  
Qualitative Study ◽  
Interpretative Phenomenological Analysis ◽  
Structured Interview ◽  
Autism Spectrum ◽  
Phenomenological Analysis ◽  
Diagnostic Process ◽  
Autism Spectrum Condition ◽  
Spectrum Condition ◽  
The Impact ◽  
Mothers Experiences

There is limited knowledge and research on the experiences of having a daughter with autism spectrum condition from a mother’s perspective. This study aims to explore the experiences of mothers who care for a daughter with autism spectrum condition, with a particular focus on female autism spectrum condition presentation. Ten mothers of daughters with autism spectrum condition took part in a semi-structured interview. Interpretative phenomenological analysis was used to analyse the data. Five superordinate themes emerged: ‘Girls have autism too’, ‘She’s a chameleon’, ‘The impact of the diagnosis’, ‘Impact on mums’ and ‘Day-to-day life’. These findings add to our knowledge of how female autism spectrum condition presents and of the experiences directly related to being the mother of a daughter with autism spectrum condition. The findings have implications for clinicians that carry out autism spectrum condition assessments and provide insights into areas where additional support can be provided to mothers and daughters. Lay abstract Parents of children with autism spectrum condition report increased stress and difficulties compared with parents of typically developing children. Our knowledge and understanding of how autism spectrum condition presents in autistic females is currently limited and parents of this population may experience challenges when raising their daughter. Given that mothers are often the main caregiver of a child with autism spectrum condition, they may have useful insights into the experiences of parenting a daughter with autism spectrum condition. Therefore, a qualitative study was undertaken to explore what mothers’ experiences are of parenting a daughter with autism spectrum condition. Semi-structured interviews were conducted with 10 mothers of daughters with autism spectrum condition. The interviews were analysed using interpretative phenomenological analysis. Five main themes emerged from the qualitative study (‘Girls have autism too’, ‘She’s a chameleon’, ‘The impact of the diagnosis’, ‘Impact on mums’ and ‘Day-to-day life’). The findings of this study expand our current knowledge of the experiences and challenges faced by mothers raising a daughter with autism spectrum condition. Mothers hold a vast amount of knowledge on their daughters’ autism spectrum condition which could inform the diagnostic process and clinical practice. Considering these results, it is important that clinicians support mothers and the family system around children with an autism spectrum condition diagnosis.

Evaluation of the Cradle to Kinder programme for Aboriginal mothers and their children: perspectives from the women and their workers

2020 ◽  
Vol 45 (4) ◽  
pp. 305-311
Author(s):  
Renée O’Donnell ◽  
Muriel Bamblett ◽  
Gabrielle Johnson ◽  
Sue-Anne Hunter ◽  
Kerry Stringer ◽  
...  
Keyword(s):  
Child Protection ◽  
Interpretative Phenomenological Analysis ◽  
Home Visiting ◽  
Well Being ◽  
Parenting Skills ◽  
Structured Interviews ◽  
Aboriginal Community ◽  
Connection System ◽  
Generous Contribution ◽  
The Impact

AbstractThis research was undertaken on the lands of the Wurundjeri people of the Kulin nation. We pay our respects to Elders of the past, present and emerging, and also acknowledge the generous contribution to this research made by women and their families and Victorian Aboriginal Child Care Agency (VACCA) staff. Aboriginal Cradle to Kinder (AC2K) is a home-visiting and advocacy programme focussed on promoting Aboriginal maternal and child health during both pre- and postnatal stages of parenthood which was delivered by VACCA, an Aboriginal Community Controlled Organisation. While there have been some feasibility assessments conducted on AC2K, no study to date has evaluated the impact of this programme from the perspective of neither the women nor the staff who deliver the programme. The aim of this study, therefore, was to evaluate how both the women and the staff evaluated the AC2K programme, namely the strengths, limitations and recommendations of the programme. Through consultation with VACCA, this study used a qualitative approach using interpretative phenomenological analysis to explore the processes underpinning the programme coupled with participants’ experiences of the programme. A co-design process was used in the development of interview questions, and a total of seven women and six workers participated in semi-structured interviews. The results revealed three superordinate themes across both participant groups: cultural connection (i.e. how well the programme facilitates cultural connection), system complexities (i.e. caseloads, staff turnover and child protection [CP] difficulties) and programme features (i.e. parenting enhancement and unique programme benefits). The processes, and the programme more broadly, were evaluated positively by both the women and staff who supported its delivery. Specifically, a greater connection to culture, increased parenting skills and unique programme benefits were reported. However, there were recommendations on how the programme could be further strengthened, including negotiable caseloads with the Department and improved partnership with CP. These changes can help to further improve the experiences of both the women and their workers when engaging in Aboriginal specific maternal health and well-being supports.

Dementia families: Relinquishing home care to aged care services: Guilt, traumatic loss and growth

Dementia ◽  
2020 ◽  
pp. 147130122097078
Author(s):  
Bruce D Walmsley ◽  
Lynne McCormack
Keyword(s):  
Home Care ◽  
Family Member ◽  
Interpretative Phenomenological Analysis ◽  
Phenomenological Study ◽  
Care Home ◽  
Family Members ◽  
Well Being ◽  
Aged Care ◽  
Structured Interviews ◽  
The Impact

Background and Objectives Few studies explore both negative and positive perspectives of family members who relinquish home care of a family member with dementia for systemic aged care. Research Design and Methods This phenomenological study sought the ‘lived’ experience of relinquishing the role of home carer for a family member with mild to severe dementia to others within care home settings, by seeking to understand the impact of aged care on family members’ psychological well-being. Using semi-structured interviews, positive and negative subjective interpretations from 17 families (27 individuals) provided data for analysis, following the protocols of interpretative phenomenological analysis. Results One superordinate theme, mistrust/integrity, overarched oscillation between mistrust of the aged care system and a struggle for personal integrity in caring for these participants. Two sub-themes emerged: intrinsic trauma and extrinsic trauma. Intrinsic trauma explained feelings of helplessness and guilt, and internally directed responses that triggered a retreat into submission ultimately reducing the participant’s role in advocacy. Extrinsic trauma represented externally directed responses such as anger and frustration, where family members became more engaged and watchful and recognised a need for vigilance and advocacy. Paradoxically oscillating between these personal struggles, participants exhibited growth, a third theme that defined assertive/advocacy utilised to nurture hope, gratitude, courage and change. Discussion and Implications Family members experienced complex distress as they relinquished home care to others within systemic aged care for a member with dementia. By developing adaptive responses as appropriate, for example, advocating for their family member or accepting compliance with treatment, collaborative care between family and staff created better outcomes for the family member with dementia.

scholarly journals Designing accessible visual programming tools for children with autism spectrum condition

2021 ◽  
Author(s):  
Misbahu S. Zubair ◽  
David J. Brown ◽  
Thomas Hughes-Roberts ◽  
Matthew Bates
Keyword(s):  
Cognitive Impairments ◽  
Interactive Media ◽  
Visual Representations ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Visual Programming ◽  
Autism Spectrum Condition ◽  
Structured Interviews ◽  
Programming Tools ◽  
Spectrum Condition

AbstractVisual programming tools allow users to create interactive media projects such as games and animations using visual representations of programming concepts. Although these tools have been shown to have huge potential for teaching children, research has shown that they may not be accessible for children with cognitive impairments, including those with autism spectrum condition. Therefore, this study proposes a set of recommendations for the design of accessible visual programming tools for children with autism spectrum condition. Semi-structured interviews with experts ($$n=7$$ n = 7 ) were conducted and thematically analysed to identify initial recommendations. A second set of semi-structured interviews with a subset of the initial experts ($$n=3$$ n = 3 ) were then conducted to validate and produce a final set of recommendations.

scholarly journals ‘My scar is called adoption’: The lived experiences of Irish mothers who have lost a child through closed adoption

2021 ◽  
Vol 45 (2) ◽  
pp. 138-154
Author(s):  
Deborah McNamara ◽  
Jonathan Egan ◽  
Pádraig McNeela
Keyword(s):  
Lived Experiences ◽  
Interpretative Phenomenological Analysis ◽  
Personal Autonomy ◽  
Well Being ◽  
Structured Interviews ◽  
Loss Of Autonomy ◽  
Therapeutic Services ◽  
Coping Patterns ◽  
The Impact

Previous research has continuously identified a need for a comprehensive model of working with first mothers in adoption. This gap in knowledge has hindered the development of services, to the detriment of the quality of life and well-being of this group. This study seeks to remedy this deficiency by exploring the lived experiences of Irish mothers who have lost a child through closed adoption. It aims to expand understanding of the impact of such loss, in particular exploring how it affects their journey of reconnection and reunion with their child in adulthood. Semi-structured interviews were undertaken with six women from Ireland who had lost a child in this way and their narratives were analysed using Interpretative Phenomenological Analysis (IPA). Two superordinate themes emerged from the data: ‘Motherhood concealed: the loss of autonomy and connection’ and ‘Motherhood revealed: a pathway towards autonomy and reconnection’. Within each superordinate theme, two subordinate ones were identified: ‘Dehumanised, disempowered and dismissed’, ‘Coping through disconnection’, ‘Breaking the silence’ and ‘Reunion and reconnection’. The first two of these encapsulate the loss of personal autonomy and connectedness resulting from the loss of a child and how participants coped with it. The two others describe the participants’ experiences of growth in personal autonomy and agency through the process of breaking the silence of their concealed motherhood and of reconnection and reunification with their now adult children. The findings indicate that engaging in therapeutic services and/or with adoption peer support enables participants to express their feelings of grief and move from coping strategies dominated by disconnection to ones marked by the autonomous processing of emotion and new coping patterns. The process of reunification with their children plays a significant role in this transition.

scholarly journals The impact on emotional well-being of being a palliative care volunteer: An interpretative phenomenological analysis

2021 ◽  
pp. 026921632110647
Author(s):  
Helena Coleman ◽  
Andy Sanderson-Thomas ◽  
Catherine Walshe
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Interpretative Phenomenological Analysis ◽  
Well Being ◽  
Phenomenological Analysis ◽  
Life Care ◽  
Structured Interviews ◽  
Care Services ◽  
The Impact

Background: Much palliative care provision relies on the support of volunteers. Attention is paid to the risks to professionals providing care, such as stress and burnout, but understanding if this is an issue for volunteers is little understood. It is important to understand the impact their role has on volunteers emotional well-being. Aim: To explore the experiences of palliative care volunteers and how the role impacted on their emotional well-being. Design: Interpretative phenomenological analysis, with data collected through semi-structured interviews. Setting/participants: Volunteers in patient-facing roles within palliative and end-of-life care services in the UK. Results: Volunteers ( n = 10) across three palliative and end-of-life care services. Four themes were developed: (1) it can be challenging; (2) it’s where I’m meant to be; (3) managing death; (4) the importance of connection. Challenges included frustrations and questioning themselves. Although difficult at times, volunteers expressed the importance of the role, doing well and that they benefitted too. They also had to manage death and discussed beliefs about life and death, acceptance and managing patients’ fears. Connection with the hospice, patients, staff and other volunteers was important, with a need for everyone to feel valued. Conclusions: Although there are psychosocial benefits for volunteers in their role, it is important to understand the challenges faced and consider ongoing support to help volunteers manage these challenges. This could be addressed through the consideration of coping mechanisms, further training and reflective practice for volunteers.

scholarly journals Autistic women’s experience of intimate relationships: the impact of an adult diagnosis

2019 ◽  
Vol 5 (1) ◽  
pp. 38-49 ◽  
Author(s):  
Elizabeth Kock ◽  
Andre Strydom ◽  
Deirdre O’Brady ◽  
Digby Tantam
Keyword(s):  
Intimate Relationships ◽  
Interpretative Phenomenological Analysis ◽  
Design Methodology ◽  
Autism Spectrum ◽  
Adult Women ◽  
Analysis Method ◽  
Structured Interviews ◽  
Content Type ◽  
The Impact ◽  
Practical Implications

Purpose The purpose of this paper is to explore the experience of intimate relationships of women who have been diagnosed with Autism in adulthood. Design/methodology/approach Semi-structured interviews were used to interview eight participants. The data were transcribed and analysed using the interpretative phenomenological analysis method. Findings Four overall themes were identified. These included “Response to the diagnosis and receiving more information about Autism”, “Factors influencing dating behaviour”, “Sex and sexual experiences” and “Experience of intimate relationships as a person with Autism”. Research limitations/implications The results of this study have implications for both research and clinical practice as it highlights the areas in which women newly diagnosed with autism spectrum disorder (ASD) could benefit from support. Practical implications The study hopes to add to the limited existing research on adult women with ASD. Originality/value To date no similar research has investigated the same phenomenon through a similar method.

scholarly journals Using the humanoid robot Kaspar in a Greek school environment to support children with Autism Spectrum Condition

2019 ◽  
Vol 10 (1) ◽  
pp. 298-317
Author(s):  
Efstathia Karakosta ◽  
Kerstin Dautenhahn ◽  
Dag Sverre Syrdal ◽  
Luke Jai Wood ◽  
Ben Robins
Keyword(s):  
School Environment ◽  
Humanoid Robot ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Autism Spectrum Condition ◽  
Classroom Activities ◽  
The Social ◽  
Spectrum Condition ◽  
The Uk ◽  
The Impact

AbstractPrevious studies conducted with the humanoid robot Kaspar in the UK have yielded many encouraging results. This paper examines the influence of conducting play sessions with Kaspar on the social and communication skills of children diagnosed with Autism Spectrum Condition (ASC) and suggests possible ways for using the robot as a (therapeutic) tool in a Greek school for children with special needs. Over a period of 10 weeks 7 children took part in a total of 111 individual play sessions with the Kaspar robot. Each child participated in between 12 and 18 sessions with the robot. The results from this study indicate that the play sessions with Kaspar appear to have positively influenced the behaviours of some of the children in specific domains such as communication and interaction, prompted speech, unprompted imitation and focus/attention. Furthermore, the children’s teachers expressed positive views regarding the impact of the play sessions on the children and offered interesting suggestions about the ways in which the robot could potentially be used in everyday teaching tasks and were eager to obtain a Kaspar for their classroom activities.

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