scholarly journals Parent experiences and coping processes when raising children with Asperger syndrome: Challenges, turning points and building resilience

2021 ◽  
Author(s):  
◽  
Jo-Lynne Gold
Keyword(s):  
Asperger Syndrome ◽  
Narrative Analysis ◽  
Meaning Making ◽  
Social Withdrawal ◽  
Turning Points ◽  
Autism Spectrum ◽  
Diagnostic Process ◽  
Structured Interviews ◽  
Parent Experiences ◽  
Building Resilience

<p>This study explored parent experiences and their coping responses raising a child or children with Asperger syndrome, an autism spectrum disorder. A family resilience framework was used to interpret the process of positive adaptations that led to resilience. A disability studies perspective considered how parents reconceptualised what was ‘normal’ as they managed the friction between societal views of difference and their child’s strengths. The chosen methodology was narrative inquiry with a thematic approach to the narrative analysis. Semi-structured interviews were conducted with 25 parents and 1 grandparent of children with Asperger syndrome in New Zealand. This study found families experienced significant stress when raising a child or children with Asperger syndrome and considerable adaptations over the course of their child’s growing up years were made.  Four key themes around challenges were identified: the challenges associated with Asperger syndrome, such as their child’s difficult behaviour, social skill difficulties and high sensory sensitivities; challenges arising from a lack of understanding and acceptance in the community that led to stigma and social withdrawal; challenges interacting with health and education services, such as a long medical diagnostic process and inadequate support at school; and challenges to family dynamics that resulted in increased tension between family members. Turning points were identified as part of the process of building resilience as parents successfully managed difficult circumstances at critical junctures in their lives. Positive coping strategies included meaning making, developing resources, planning ahead and solving problems; and strengthening intrapersonal assets.  The findings from this study contribute to the theoretical construct of resilience and to the emerging literature on positive adaptations. Implications for practice include encouraging respectful parent and professional relationships; strengthening social support, especially through parent groups; raising parents’ self-efficacy through tailored behavioural strategies for their child; early intervention and targeted school resources; and support at critical times.</p>

scholarly journals Parent experiences and coping processes when raising children with Asperger syndrome: Challenges, turning points and building resilience

2021 ◽  
Author(s):  
◽  
Jo-Lynne Gold
Keyword(s):  
Asperger Syndrome ◽  
Narrative Analysis ◽  
Meaning Making ◽  
Social Withdrawal ◽  
Turning Points ◽  
Autism Spectrum ◽  
Diagnostic Process ◽  
Structured Interviews ◽  
Parent Experiences ◽  
Building Resilience

<p>This study explored parent experiences and their coping responses raising a child or children with Asperger syndrome, an autism spectrum disorder. A family resilience framework was used to interpret the process of positive adaptations that led to resilience. A disability studies perspective considered how parents reconceptualised what was ‘normal’ as they managed the friction between societal views of difference and their child’s strengths. The chosen methodology was narrative inquiry with a thematic approach to the narrative analysis. Semi-structured interviews were conducted with 25 parents and 1 grandparent of children with Asperger syndrome in New Zealand. This study found families experienced significant stress when raising a child or children with Asperger syndrome and considerable adaptations over the course of their child’s growing up years were made.  Four key themes around challenges were identified: the challenges associated with Asperger syndrome, such as their child’s difficult behaviour, social skill difficulties and high sensory sensitivities; challenges arising from a lack of understanding and acceptance in the community that led to stigma and social withdrawal; challenges interacting with health and education services, such as a long medical diagnostic process and inadequate support at school; and challenges to family dynamics that resulted in increased tension between family members. Turning points were identified as part of the process of building resilience as parents successfully managed difficult circumstances at critical junctures in their lives. Positive coping strategies included meaning making, developing resources, planning ahead and solving problems; and strengthening intrapersonal assets.  The findings from this study contribute to the theoretical construct of resilience and to the emerging literature on positive adaptations. Implications for practice include encouraging respectful parent and professional relationships; strengthening social support, especially through parent groups; raising parents’ self-efficacy through tailored behavioural strategies for their child; early intervention and targeted school resources; and support at critical times.</p>

Parent stress and coping trajectories in Hispanic and non-Hispanic families of children at risk of autism spectrum disorder

Autism ◽  
2021 ◽  
pp. 136236132110016
Author(s):  
Emily J Hickey ◽  
Michelle Stransky ◽  
Jocelyn Kuhn ◽  
Jessica E Rosenberg ◽  
Howard J Cabral ◽  
...  
Keyword(s):  
Autism Spectrum Disorder ◽  
Parenting Stress ◽  
Autism Spectrum ◽  
Diagnostic Process ◽  
Stress Coping ◽  
Family Impact ◽  
Hispanic Parents ◽  
Hispanic Families ◽  
Parent Experiences ◽  
Over Time

Significant disparities exist between Hispanic and non-Hispanic families in time-to-diagnosis among children identified as at risk of autism spectrum disorder; yet, little is known about parent experiences throughout the diagnostic process that may contribute to or help explain these disparities. The current study examined longitudinal trajectories of parenting stress, coping, and perceived family impact during the autism spectrum disorder diagnostic process among an ethnically and racially diverse low-income, urban sample, allowing for comparisons between Hispanic and non-Hispanic families. Hispanic families reported lower levels of parenting stress (χ2 = 5.35(1), p = 0.021), avoidant (χ2 = 9.66(1), p = 0.002) and approach (χ2 = 8.61(1), p = 0.003) coping, and negative family impact (χ2 = 5.39(1), p = 0.020) across time (main effects) compared with non-Hispanic families. Furthermore, there were differences in the change in use (Time Period × Ethnicity interaction effects) of both avoidant (χ2 = 10.80(3), p = 0.013) and approach (χ2 = 11.57(3), p = 0.009) coping, as well as negative family impact (χ2 = 9.81(3), p = 0.020), between Hispanic and non-Hispanic parents over time. These differences begin to shed light on the unique experiences of Hispanic parents. Because of the strengths that Hispanic families demonstrate, interventions that leverage those strengths and focus on education, empowerment, and resilience might be particularly beneficial for Hispanic families and may also better inform work to increase resilience in non-Hispanic families. Lay abstract Little is known about parent experiences throughout the diagnostic process for autism or how these parent experiences may help explain the disparities that exist between Hispanic and non-Hispanic families in time-to-diagnosis among children identified as at risk for autism. The current study examined trajectories of parenting stress, coping, and perceived family impact over time, throughout the autism diagnostic process among Hispanic and non-Hispanic families. Hispanic families reported lower levels of parenting stress, coping, and negative family impact across time. Further, there were differences in the change in use of coping and the amount of negative family impact reported between Hispanic and non-Hispanic parents over time. These differences shed light on the unique experiences and strengths of Hispanic families demonstrate. Interventions that leverage those strengths and focus on education, empowerment, and resilience might be particularly beneficial for Hispanic families and may also better inform work to increase resilience.

scholarly journals Parent Experiences of Autism Spectrum Disorder Diagnosis: a Scoping Review

2021 ◽  
Author(s):  
Amber Makino ◽  
Laura Hartman ◽  
Gillian King ◽  
Pui Ying Wong ◽  
Melanie Penner
Keyword(s):  
Autism Spectrum Disorder ◽  
Qualitative Methodology ◽  
Data Extraction ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Assessment Process ◽  
Diagnostic Process ◽  
Autism Spectrum Disorder Diagnosis ◽  
Parent Experiences ◽  
Research Findings

AbstractThe purpose of this review was to identify the quantity, breadth, and methodological characteristics of literature examining parent perspectives of autism spectrum disorder diagnosis, synthesize key research findings, and highlight gaps in the current literature. A systematic search was conducted for the period January 1994–February 2020. One hundred and twenty-two articles underwent data extraction. The majority of studies took place in Europe and North America in high-income countries. Over half of the studies used qualitative methodology. Four key components of the diagnostic experience were identified: journey to assessment, assessment process, delivery of the diagnosis and feedback session, and provision of information, resources, and support. Themes of parental emotions and parental satisfaction with the diagnostic process were also found.

How Taiwanese parents of children with autism spectrum disorder experience the process of obtaining a diagnosis: A descriptive phenomenological analysis

Autism ◽  
2017 ◽  
Vol 22 (4) ◽  
pp. 388-400 ◽  
Author(s):  
Kuo-Yu Chao ◽  
Hsueh-Ling Chang ◽  
Wei-Chih Chin ◽  
Hsin-Mei Li ◽  
Sue-Hsien Chen
Keyword(s):  
Autism Spectrum Disorder ◽  
Chinese Culture ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Phenomenological Analysis ◽  
Professional Services ◽  
Spectrum Disorder ◽  
Diagnostic Process ◽  
Structured Interviews ◽  
Parental Experience

An autism spectrum disorder can result in considerable stress and confusion for parents as they attempt to understand their child’s problems and obtain a diagnosis. Few studies have explored the parental experience in the context of Chinese culture. The purpose of this study was to understand the experiences of parents in Taiwan of children diagnosed with autism spectrum disorder. In total, 15 parents, 1 father and 14 mothers, were recruited by purposive sampling. This qualitative study used semi-structured interviews and descriptive phenomenological analysis. The findings indicated that parents of children diagnosed with autism spectrum disorder underwent five coping experiences during the diagnostic process: (1) uncertainty and difficulty understanding their child’s behaviour, which occurred during the pre-diagnosis phase; (2) obligation to obtain professional services; (3) anxious searching for a second opinion, which occurred during the diagnosis phase; (4) acceptance and fortitude and (5) further adjustment during the post-diagnosis phase. Our findings add to our understanding of how parents experience the diagnostic process, which could improve medical professionals’ counselling and support for parents at the stage of obtaining a diagnosis for their children.

Social Communication Intervention for an Adult with Asperger Syndrome: Experiences, Perspectives, and Challenges

2014 ◽  
Vol 21 (1) ◽  
pp. 29-37
Author(s):  
Siva priya Santhanam
Keyword(s):  
Asperger Syndrome ◽  
Social Communication ◽  
Autism Spectrum ◽  
Childhood And Adolescence ◽  
Work Settings ◽  
Social Abilities ◽  
Old Adult ◽  
Social Communication Intervention ◽  
Highly Able ◽  
Organizational Needs

Adults on the autism spectrum, despite having received intervention throughout their childhood and adolescence, continue to experience challenges with everyday social interactions, forming and maintaining relationships, and social abilities needed in work settings. This article presents a case example of a 22-year-old adult with Asperger syndrome, and highlights the issues in providing intervention for highly able young adults on the autism spectrum. A unique feature of this report is the inclusion of the client's own insights into his experiences, perspectives, and challenges with the intervention. The approaches used to address his social communication and organizational needs are outlined, and clinical implications discussed.

Study-work-life balance of international students in the context of temporal boundaries

2019 ◽  
Vol 7 (2) ◽  
pp. 63-79
Author(s):  
Megan O'Mahony ◽  
Debora Jeske
Keyword(s):  
International Students ◽  
Social Withdrawal ◽  
Work Life ◽  
Work Life Balance ◽  
Boundary Management ◽  
Structured Interviews ◽  
Time Zone ◽  
Life Balance ◽  
Postgraduate Students ◽  
Personal Challenges

The goal of this qualitative study was to examine the experience of study-work-life balance among international students who were separated from their family both geographically and temporally. Using 10 semi-structured interviews with postgraduate students and thematic analysis, several themes were identified. These included boundary management shifts due to study/work demands and time zone differences. In addition, students reported social and personal challenges (in terms of family’s expectations, relationships maintenance, socialization in host country). Temporal boundaries contributed to social withdrawal and isolation among students, many of which were heavily reliant on their own family network for support. The findings strengthen the argument that time difference impacts the boundary management and social experience of international students.

scholarly journals Characterizations of preschool technology education: analyses of seven individual preschool teachers’ and childcare attendants’ descriptions of their teaching

2021 ◽  
Author(s):  
Pernilla Sundqvist
Keyword(s):  
Technology Education ◽  
Narrative Analysis ◽  
Digital Technology ◽  
Preschool Teachers ◽  
Learning Objective ◽  
Structured Interviews ◽  
Children's Play ◽  
Staff Members ◽  
The Subject ◽  
Preschool Staff

AbstractIn recent decades the preschool has leaned more towards a learning-oriented pedagogy, where the subject of technology has been given a more prominent place. Still, studies on how individual preschool staff members perceive and teach technology is scarce. This study shows how seven preschool staff in Sweden describe their work with the subject of technology and how technology education is characterized in these descriptions. The data was produced by means of semi-structured interviews and a questionnaire and analyzed with narrative analysis. The results show very diverse practices of technology education, implying the learning possibilities for children in different preschools are not equal. Some of the staff describe a clear and conscious teaching of technology, while others describe teaching what can be viewed as a limited and/or shallow technology education, where technology is sometimes used as means for learning other subjects or contents rather than being the learning objective. Six ways to characterize technology education was found, namely: technology education (1) concerns technological objects and systems in children’s environment, (2) concerns learning to handle technological objects, (3) is doing experiments, (4) involves developing abilities, (5) is naturally included in children’s play and (6) departs from digital technology.

Between sexual assault and compassion: The experience of living with a spouse’s dementia-related hypersexuality—A narrative case-study

Dementia ◽  
2021 ◽  
pp. 147130122110320
Author(s):  
Dovrat Harel ◽  
Tova Band-Winterstein ◽  
Hadass Goldblatt
Keyword(s):  
Sexual Assault ◽  
Meaning Making ◽  
Psychological Symptoms ◽  
Single Case ◽  
Intimate Relationship ◽  
Older Woman ◽  
Structured Interviews ◽  
Narrative Case Study ◽  
As If

Background Hypersexuality is one of the behavioral and psychological symptoms of dementia. This symptom can lead to poor quality of life for the person who lives with dementia, as well as for his or her caregiver, who might be exposed to sexual assault. Aim This study aimed to highlight the experience of an older woman living and coping with a spouse who exhibits dementia-related hypersexuality. Method A narrative case-study of a single case was designed, composed of four semi-structured interviews conducted over a 10-month period. The data were analyzed through thematic, structural, and performance analysis. Findings Four phases were revealed, depicting the experience of being a partner and caregiver of a spouse with dementia-related hypersexuality: a) “I need help”: A distress call; b) “It depends how long I agree to go on with it”: Living with the ambiguous reality of dementia-related hypersexual behavior within an ongoing intimate relationship; c) “It’s as if I’m hugging someone who’s no longer alive”: The transition from the previous couplehood identity to a new couplehood identity; and d) “I am just taking care of him as if he is a child”: A compassionate couplehood identity construction. Conclusions Living with a partner with dementia-related hypersexuality is a distressing experience for the caregiver-spouse. Yet, positive memories from a long intimate relationship can lead to the creation of a compassionate identity, which supports the caregiving process, and creates a sense of acceptance and meaning making. This, in turn, enables a positive aging experience. These finding have some practical implications for supporting and intervening in such cases.

“God, why?”: The Experience of Mothers from the Israeli Ultra-Orthodox Sector after their Child’s Disclosure of Sexual Abuse

2021 ◽  
pp. 088626052110219
Author(s):  
Aiala Szyfer Lipinsky ◽  
Limor Goldner
Keyword(s):  
Sexual Abuse ◽  
Minority Groups ◽  
Phenomenological Study ◽  
Meaning Making ◽  
Initial Step ◽  
Well Being ◽  
Structured Interviews ◽  
Drawing Task ◽  
Qualitative Phenomenological ◽  
Qualitative Phenomenological Study

Studies dealing with the experiences of non-offending mothers from the general population and minority groups after their child’s disclosure of sexual abuse are scarce, and studies on mothers from the Jewish ultra-Orthodox community are non-existent. This study takes an initial step in filling this gap by exploring how the normalization of sexual abuse shapes these mothers’ experiences. A qualitative phenomenological study was conducted on a sample of 21 mothers from the ultra-Orthodox sector whose children had been sexually abused. It consisted of in-depth, semi-structured interviews of the mothers followed by a drawing task on their experience. The analysis of the interviews yielded four central themes: the role of social stigmatization and religion on the mother’s ability to share her child’s abuse; the effect of the disclosure on the mothers’ mental state and maternal competency; the mothers’ ongoing experience in the shadow of this unprocessed/unresolved trauma; and the mothers’ coping strategies, including acceptance, faith, and meaning making. The findings highlight the influence of the tension between the need to adhere to religious norms and preserve the social fabric and the need to enhance mothers’ and children’s well-being.

scholarly journals Diagnosis despite clinical ambiguity: physicians’ perspectives on the rise in Autism Spectrum disorder incidence

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Michael Davidovitch ◽  
Dorit Shmueli ◽  
Ran Shmuel Rotem ◽  
Aviva Mimouni Bloch
Keyword(s):  
Autism Spectrum Disorder ◽  
Autism Spectrum ◽  
Mental Illnesses ◽  
Spectrum Disorder ◽  
Medical Community ◽  
Categorical Variables ◽  
Diagnostic Process ◽  
Child Neurology ◽  
Chi Square ◽  
Child Psychiatrists

Abstract Background To provide insight on physicians’ perspectives concerning recent changes in the incidence and diagnostic process of Autism Spectrum Disorder (ASD) compared to other mental and neurodevelopmental disorders. Method A questionnaire was sent to 191 specialists in child neurology and child development, and 200 child psychiatrists in Israel. Information was collected on professional background, as well as on physicians’ opinions concerning the accuracy and rate of ASD diagnosis compared to that of cerebral palsy (CP), mental illness, and Attention Deficit Hyperactivity Disorder (ADHD). For each closed-ended question, a global chi-square test for categorical variables was performed. Results 115 (60.2%) of specialists in child neurology and development, and 59 (29.5%) of child psychiatrists responded. Most physicians (67.2%) indicated that there was a moderate/significant increase in the incidence of ASD, which was higher than similar responses provided for CP (2.9%, p < 0.01) and mental illnesses (14.4%, p < 0.01), and similar to responses provided for ADHD (70.1%, p = 0.56). 52.8% of physicians believed that in more than 10% of clinical assessments, an ASD diagnosis was given despite an inconclusive evaluation (CP: 8.6%, p < 0.01; mental illnesses: 25.8%, p = 0.03; ADHD: 68.4%, p = 0.03). Conclusion The clinicians perceive both ASD and ADHD as over-diagnosed disorders. The shared symptomology between ASD and other disorders, coupled with heightened awareness and public de-stigmatization of ASD and with the availability of ASD-specific services that are not accessible to children diagnosed with other conditions, might lead clinicians to over-diagnose ASD. It is advisable to adopt an approach in which eligibility for treatments is conditional on function, rather than solely on a diagnosis. The medical community should strive for accurate diagnoses and a continuous review of diagnostic criteria.

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