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.

Listening to Bedouin fathers of children with autism spectrum disorder

2018 ◽  
Vol 56 (2) ◽  
pp. 345-358 ◽  
Author(s):  
Iris Manor-Binyamini
Keyword(s):  
Autism Spectrum Disorder ◽  
Support Services ◽  
Cultural Context ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Structured Interviews ◽  
Raising Children ◽  
Cultural Perspectives ◽  
Children With Asd

Although children across the world experience autism spectrum disorder (ASD), most research on ASD has been conducted using Western cultural perspectives and has focused primarily on mothers, leaving significant gaps in the literature. This study aimed to address these gaps by exploring the experiences of fathers raising children with ASD in a Bedouin community. To this end, a sample of 19 fathers of children (aged 6–15 years) with ASD living in recognized and unrecognized Bedouin settlements in the Negev participated in ethnographic, semi-structured interviews designed to investigate their experiences with raising a child with ASD in their community. Two major themes emerged: the challenges that Bedouin fathers of children with ASD face, and the influence of socio-demographic and cultural characteristics on their experience. Findings reflect the complex experiences of fathers raising children with ASD in the Bedouin community, stemming from their socio-cultural context and the limited knowledge and support services that are available in the community for these children. This article concludes with recommendations on how to enhance professional sensitivity and provide more culturally tailored services for parents of children with ASD.

Improving peri-operative psychosocial interventions for children with autism spectrum disorder undergoing ENT procedures

2020 ◽  
Vol 134 (9) ◽  
pp. 838-844
Author(s):  
R Fahy ◽  
M Corbett ◽  
I Keogh
Keyword(s):  
Autism Spectrum Disorder ◽  
Special Needs ◽  
Children With Autism ◽  
Psychosocial Interventions ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Structured Interviews ◽  
Social Story ◽  
Staff Members ◽  
Clear Communication

AbstractObjectivesChildren with autism spectrum disorder face a broad range of communication and sensory challenges. Many of these children also have chronic ENT issues. This study aims to better understand these challenges and improve our services for children with autism spectrum disorder.MethodsQuestionnaires and semi-structured interviews were carried out with parents of children with autism spectrum disorder.ResultsThirty-four individuals participated, comprising 9 caregivers and 25 staff members. All parents recognised their critical roles in understanding their children's special needs and sensitivities. Parents and staff stressed the importance of a partnership role that inquired about unique needs, leading to environmental modifications for individual children.ConclusionThe importance of listening to and involving caregivers is a fundamental tenet; parents must be recognised as the experts. Uncertainty must be kept to a minimum, with clear communication in a structured, low-arousal environment for these children. We have listened to parents and staff, and developed a social story.

Microaggression Experiences of Fathers With Children With Autism Spectrum Disorder

2019 ◽  
Vol 27 (2) ◽  
pp. 199-208
Author(s):  
Michael D. Hannon ◽  
Raymond Blanchard ◽  
Cassandra A. Storlie
Keyword(s):  
Mental Health ◽  
Autism Spectrum Disorder ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Phenomenological Analysis ◽  
Additional Research ◽  
Spectrum Disorder ◽  
Interpretive Phenomenological Analysis ◽  
Family Wellness

Using interpretive phenomenological analysis, we interviewed six fathers to learn about their experiences in acclimating others to their children’s autism spectrum diagnoses. Results indicate a need for counselors to understand and support clients who experience frequent microaggressions and stereotyping related to autism spectrum disorder and its subsequent influence on fathers’ mental health and family wellness. Recommendations for working with families of individuals with autism and additional research are presented.

scholarly journals Exploring the Potential Use of Telehealth Technology to Improve the Diagnostic Process of Autism Spectrum Disorder (ASD) in Wales, United Kingdom

2021 ◽  
Author(s):  
◽  
Manahil M. Alfuraydan
Keyword(s):  
Autism Spectrum Disorder ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Diagnostic Assessment ◽  
Diagnostic Process ◽  
Successful Implementation ◽  
Online Questionnaire ◽  
Parental Experience ◽  
Use Of Technology ◽  
Willingness To Use

There is a significant delay between parents initially seeking help and receiving a diagnosis of Autism Spectrum Disorder (ASD). Telehealth has the potential to accelerate the ASD diagnostic pathway. However, user acceptance is essential for the successful implementation of telehealth technology. This thesis therefore aims to examine whether telehealth can be used to increase access to ASD diagnostic services in Wales and reduce the time taken to receive a diagnosis. To achieve this, a multimethod approach was adopted, comprising of three studies. Initially, a scoping review (Study1) was conducted examining the use of telehealth in ASD diagnostic assessment. This identified two methods: (a) Real-Time (b) Store-and-Forward, particularly the Naturalistic Observation Diagnostic Assessment (NODA) system. Results also suggest that telehealth is feasible and acceptable to the families. However, findings indicate that no study had thus far examined the factors of telehealth acceptance, based on theoretical foundation. Therefore, Studies two and three were conducted, to explore the parental experience of the diagnostic process, and investigate the predictors of their acceptance to use NODA for ASD diagnostic assessment, using the Unified Theory of Acceptance and Use of Technology model. Data for both studies was collected via an online questionnaire, targeting parents of children with ASD in Wales. Descriptive and inferential statistics were applied to the closed-ended questions, and thematic analysis was used for open-ended questions. Study 2 findings revealed that the majority of parents were dissatisfied with the diagnostic process, with the time taken to obtain a diagnosis being a predictor of their satisfaction. Study 3 found that the majority of parents felt positively towards the NODA, with their willingness to use the system being predicted by their age, performance expectancy, social influence and comfort with using laptop and smartphone devices. Implications and recommendations are further discussed at the end of the thesis.

scholarly journals The Experience of Parents of Children with Autism Spectrum Disorder During the COVID-19 Pandemic: A Qualitative Analysis

2020 ◽  
Author(s):  
China Parenteau ◽  
Stephen Bent ◽  
Bushra Hossain ◽  
Yingtong Chen ◽  
Felicia Widjaja ◽  
...  
Keyword(s):  
Autism Spectrum Disorder ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Structured Interviews ◽  
Social Situations ◽  
E Learning ◽  
Families With Children ◽  
Direct Feedback ◽  
Level 2

Abstract Families with children with autism spectrum disorder (ASD) face a unique set of challenges with the rise of the COVID-19 pandemic and shelter-in-place related to a diverse set of issues, including explaining COVID-19 and safety precautions in a comprehensible way, building structure in home for e-learning to take place, and guiding children back into social situations and the community. We sought to obtain direct feedback through semi-structured interviews from fifteen parents of children and adolescents from a non-public school for children with level 2 and 3 ASD to both develop an initial guide for families, teachers and clinicians caring for children with ASD and to create awareness in the community about the challenges presented by COVID-19 and shelter-in-place.

scholarly journals Informational support for families of children with autism spectrum disorder

2021 ◽  
Vol 42 ◽  
Author(s):  
Gisele Weissheimer ◽  
Verônica de Azevedo Mazza ◽  
Cibelly Aliny Siqueira Lima Freitas ◽  
Silvana Rodrigues da Silva
Keyword(s):  
Autism Spectrum Disorder ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Care Process ◽  
Informational Support ◽  
Sources Of Information ◽  
Structured Interviews ◽  
Categorical Analysis ◽  
Qualitative Data Analysis Software

ABSTRACT Objective: To identify the sources of informational support used by families of children with Autism Spectrum Disorder. Method: Qualitative and descriptive research carried out in three health institutions and three teaching institutions in Paraná, Ceará and Amapá. 55 family members participated who responded to semi-structured interviews, between September 2018 and 2019. Thematic categorical analysis and the resources of Qualitative Data Analysis Software were used. Results: Families find informational support from several sources, both formal and informal, such as the internet and other sources (books, Workshops, courses, television). Conclusion: Families use different sources of information, however, often incomplete and contradictory, which can generate a new demand on health professionals, in order to integrate access to information in the health care process, since they must be considering benefits and weaknesses that this represents for society.

scholarly journals Análisis del impacto de un programa deportivo en niños con Trastorno del Espectro del Autismo (Analysis of the impact of a sport program on children with Autism Spectrum Disorder)

Retos ◽  
2020 ◽  
pp. 98-105
Author(s):  
José María López Díaz ◽  
Ricardo Moreno Rodríguez ◽  
José Luis López Bastías
Keyword(s):  
Autism Spectrum Disorder ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Slight Reduction ◽  
Structured Interviews ◽  
Sports Activity ◽  
Monthly Basis ◽  
Dsm 5 ◽  
The Impact

A través de la presente investigación se plantea el objetivo de desarrollar un programa socio-deportivo para mejorar las habilidades motrices y las habilidades sociales de niños con trastorno del espectro del autismo, además de estudiar las repercusiones que tiene la práctica deportiva en niños con trastorno del espectro del autismo La actividad física y deportiva puede ser un pilar fundamental para lograr alcanzar un pleno desarrollo en los ámbitos personales y sociales. Para ello, se articula un programa socio-deportivo con una duración de ocho meses, en el que participan 15 niños con trastorno del espectro del autismo, divididos en tres grupos homogéneos y seleccionados a través de entrevistas semiestructuradas realizadas a su núcleo familiar, tomando como criterio de inclusión que tuvieran edades comprendidas entre los seis y los 12 años, además de tener un grado de apoyos necesarios uno o dos (según el DSM-5). El impacto del programa se evalúa a través de un sistema de rúbrica cumplimentado por dos observadores a lo largo de todas las sesiones. Los resultados obtenidos se obtienen a través de la comparación de las puntuaciones medias entre ambos observadores, estableciendo las puntuaciones medias de forma mensual y realizando la prueba de significación de Wilcoxon para muestras relacionadas. Los resultados muestran diferencias significativas entre dos momentos de medición. El primero, al inicio del programa, con la finalidad de establecer una línea base sobre la que comparar el segundo momento, al finalizar el programa. También se puede observar una tendencia de mejora a través del tiempo, con un leve estancamiento entre los meses de enero y febrero, y una leve reducción del rendimiento al finalizar el programa. Abstract. The objective of this research is to develop a social-sport program to improve motor skills and social skills of children with autism spectrum disorder, in addition to studying the repercussions that sports practice has on children with autism disorder. Physical and sports activity can be a fundamental pillar for achieving full development in personal and social fields. To this end, a social-sport program with a duration of eight months is developed, involving 15 children with autism spectrum disorder divided into three homogeneous groups and selected through semi-structured interviews conducted with their family nucleus. Inclusion criteria were being between the ages of six and 12 years old; having degree one or two of necessary support (according to the DSM-5). The impact of the program is evaluated through a rubric system completed by two observers throughout all the sessions. The results are obtained by means of comparison of mean scores between both observers, establishing the mean scores on a monthly basis and performing the Wilcoxon significance test for related samples. The results show significant differences between the two measurement times (the first, at the beginning of the program, in order to establish a baseline against which to compare the second time, at the end of the program). A tendency of improvement can also be observed over time, with a slight stagnation between the months of January and February, and a slight reduction in performance at the end of the program.

scholarly journals Reaction to diagnosis and subsequent health in mothers of children with autism spectrum disorder

Autism ◽  
2018 ◽  
Vol 23 (6) ◽  
pp. 1442-1448 ◽  
Author(s):  
Phil Reed ◽  
Lisa A Osborne
Keyword(s):  
Autism Spectrum Disorder ◽  
Health Status ◽  
Children With Autism ◽  
Physical Symptoms ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Diagnostic Process ◽  
Negative Consequences ◽  
Parental Health ◽  
Reaction To Diagnosis

The current study assessed whether reactions to diagnosis are associated with health status for mothers of children with autism spectrum disorder at the time of diagnosis, and whether such diagnostic-reaction resolution status is associated with changes in health status over time. A total of 84 mothers of children newly diagnosed with autism spectrum disorder, with stable reactions to diagnosis over a year, participated. Their perceptions of their physical and psychological functioning, and quality of life, were taken at the time of diagnosis and 1 year later. The mothers were also given the Reaction to Diagnosis Interview. Mothers who had an unresolved reaction to diagnosis had a worse health status in terms of their perception of the physical symptoms at the time of the diagnosis, and showed worsening levels of health over the period of a year, relative to mothers who had a resolved diagnostic status. These relationships were independent of other potential predictors of ill health in this sample. The findings point to the potential of the diagnostic process to negatively impact parental health. Given that this can have negative consequences for child prognosis, as well as parental health, there is a need to develop better understanding of the impacts of diagnostic practices.

scholarly journals Information behaviour of parents of children with autism spectrum disorder (ASD): a case study

2020 ◽  
Author(s):  
Raquel Chávez ◽  
◽  
Martha Sabelli ◽  
Keyword(s):  
Autism Spectrum Disorder ◽  
Information Needs ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Structured Interviews ◽  
Web Searches ◽  
Convenience Sample ◽  
Information Behaviour ◽  
Lack Of Information

Introduction. This investigation focuses on the information behaviour of parents of children with autism spectrum disorder (ASD) inside an organisation (Aletea) located in Montevideo-Uruguay. This study aims to make visible the information needs these parents experience when making decisions for their children’s welfare. It is the first phase of an investigation to provide an indepth comparison with other countries. Method. A literature review, database analyses and web searches were done to standardise the current work with the methodology of the field. Also, with a convenience sample, 12 semi-structured interviews were conducted among parents of this organisation. Analysis. Qualitative analyses were carried out as all the interviews were recorded on audio with prior consent of the interviewees. The questions were classified into categories and sub-categories for a better understanding of the results. Results. Parents' information practices demonstrate obstacles and difficulties in seeking and accessing available and reliable sources regarding autism spectrum disorder. The lack of information generated at local levels leads to consulting and sharing information with their closest contacts and social networks, especially their peers in parent groups. Conclusion. It is considered necessary to continue with this line of research both in Uruguay and around the world since there is a lack of studies on this subject.

scholarly journals COVID-19 Related Challenges and Advice from Parents of Children with Autism Spectrum Disorder

2020 ◽  
Vol 2 ◽  
pp. 73-82
Author(s):  
China I. Parenteau ◽  
Stephen Bent ◽  
Bushra Hossain ◽  
Yingtong Chen ◽  
Felicia Widjaja ◽  
...  
Keyword(s):  
Autism Spectrum Disorder ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Structured Interviews ◽  
Positive Coping ◽  
Children With Asd ◽  
Wide Range ◽  
Families With Children ◽  
And Behavior

With the rise of the COVID-19 pandemic and shelter-in-place, families with children with autism spectrum disorder (ASD) face a unique set of challenges related to a diverse set of issues. A qualitative study was conducted in the form of semi-structured interviews from fifteen parents of children and adolescents from a non-public school for children with ASD. Questions covered the following topic areas: general COVID-19 experiences and concerns, changes in the child’s mood and behavior, changes in parent mood and behavior, and coping/advice. Quotes and descriptions from the participants were reviewed and grouped into thematic areas. Findings showed that parents of children with ASD are facing a wide range of challenges, including explaining COVID-19 and safety precautions to their child in a comprehensible way, assisting with e-learning, and guiding their child back into social situations and the community. As children with ASD have difficulties with transitions, parents stated the importance of creating structure in the home by creating schedules and boundaries, while allowing for flexibility as to not over enforce the rigidity children with autism often face. Advice on coping with the additional stressors were also shared. Parents recommended finding time for themselves to reset, utilizing support systems, and reflecting on daily pleasures as positive coping mechanisms. This study aimed to both develop an initial guide for families, teachers and clinicians caring for children with ASD and to create awareness in the community about the challenges presented by COVID-19 and shelter-in-place.

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