scholarly journals Caring for Children Diagnosed with Autism Spectrum Disorder: Caregivers’ Experiences

2020 ◽  
Vol 22 (2) ◽  
Author(s):  
Nomfundo Mazibuko ◽  
Hilda Shilubane ◽  
Solomon Manganye
Keyword(s):  
Autism Spectrum Disorder ◽  
Support Groups ◽  
Social Stress ◽  
Financial Burden ◽  
Developed Countries ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Structured Interviews ◽  
South Africans ◽  
Interview Guide

Although awareness about autism has increased in developed countries, more so than in developing countries, autism spectrum disorder (ASD) remains poorly understood by most South Africans, especially those in remote areas and in areas where research is limited. Furthermore, intervention services are often scarce or not available due to lack of knowledge amongst healthcare professionals. The current study aimed to explore caregivers’ experiences of children with ASD in the Ehlanzeni District, Mpumalanga, South Africa. The study adopted a qualitative approach, and data was collected using semi-structured interviews, in which an interview guide was used. Twelve participants were selected purposively from the three different schools in the Ehlanzeni District and interviewed for the study. The data was analysed using thematic content analysis. The study adhered to ethical considerations. The findings of the study indicated that caregivers of children diagnosed with ASD experienced psychological stress; social stress; financial burden; lack of family support; and reported unavailability and accessibility of services. Therefore, information regarding a range of inexpensive interventions and educational programmes should be available for caregivers in order to reduce their psychological and social stress. Medicines should be available and accessible within the district to avoid caregivers having to travel long hours to access them, and to reduce their financial burden. Caregivers’ support groups should also be established.

scholarly journals Perceptions of Autism Spectrum Disorder (ASD) Etiology among Parents of Children with ASD

2021 ◽  
Vol 18 (13) ◽  
pp. 6774
Author(s):  
Wei-Ju Chen ◽  
Zihan Zhang ◽  
Haocen Wang ◽  
Tung-Sung Tseng ◽  
Ping Ma ◽  
...  
Keyword(s):  
Autism Spectrum Disorder ◽  
Content Analysis ◽  
Neurodevelopmental Disorder ◽  
Autism Spectrum ◽  
Parental Perceptions ◽  
Repetitive Behaviors ◽  
Spectrum Disorder ◽  
Structured Interviews ◽  
Children With Asd ◽  
Religious Factors

Background: Autism spectrum disorder (ASD) is a neurodevelopmental disorder characterized by social communication deficits and restricted or repetitive behaviors. Parental perceptions of the etiology of their child’s ASD can affect provider–client relationships, bonding between parents and their children, and the prognosis, treatment, and management of children with ASD. Thus, this study sought to examine the perceptions of ASD etiology of parents of children with ASD. Methods: Forty-two parents of children diagnosed with ASD were recruited across Texas. Semi-structured interviews were conducted individually. All interviews were recorded and later transcribed verbatim for content analysis utilizing NVivo 12.0 (QSR International, Doncaster, Australia). Results: The content analysis identified the following themes regarding parental perceptions of ASD etiology: Genetic factors (40.5%), environmental factors (31.0%), problems that occurred during pregnancy or delivery (23.8%), vaccinations (16.7%), other health problems (7.1%), parental age at the time of pregnancy (4.8%), and spiritual or religious factors (2.4%). Conclusions: The parental perceptions of ASD etiology were diverse, but several views, such as vaccinations and spiritual or religious factors, were not based on scientific evidence. Health professionals and researchers can use these findings to develop and provide targeted education to parents who have children with ASD. Our findings also support policymakers in developing campaigns designed to increase parental ASD awareness and knowledge.

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.

The Formation of Postsecondary Expectations Among Parents of Youth With Autism Spectrum Disorder

2019 ◽  
Vol 35 (2) ◽  
pp. 118-128 ◽  
Author(s):  
Anne V. Kirby ◽  
Nancy Bagatell ◽  
Grace T. Baranek
Keyword(s):  
Autism Spectrum Disorder ◽  
Transition To Adulthood ◽  
Autism Spectrum ◽  
Parent Expectations ◽  
Spectrum Disorder ◽  
Future Research ◽  
Structured Interviews ◽  
The Family ◽  
Postsecondary Expectations

Research suggests higher parent expectations can predict more independent outcomes of youth with autism spectrum disorder (ASD), yet little is known about how parents’ expectations are formed. To gain an understanding of their formation, we conducted semi-structured interviews with seven parents of adolescents with ASD. Three main types of influences on parent expectations were identified: factors related to the youth, to the parent, and to social and societal forces external to the family. Although not directly probed, all of the participants also discussed their approaches to planning for the future, suggesting a connection with their expectations. These findings contribute to a growing body of literature on the role of parent expectations during the transition to adulthood. Future research and clinical practice implications include designing interventions aimed at expanding parent expectations in addition to approaches directly preparing youth with ASD for adulthood as a means to improve outcomes.

Randomized controlled trial of a sibling support group: Mental health outcomes for siblings of children with autism

Autism ◽  
2020 ◽  
Vol 24 (6) ◽  
pp. 1468-1481 ◽  
Author(s):  
Emily A Jones ◽  
Theresa Fiani ◽  
Jennifer L Stewart ◽  
Nicole Neil ◽  
Susan McHugh ◽  
...  
Keyword(s):  
Mental Health ◽  
Autism Spectrum Disorder ◽  
Support Groups ◽  
Support Group ◽  
Controlled Trial ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Typically Developing ◽  
Problem Solving Skills ◽  
Typically Developing Siblings

Typically developing siblings of a child with autism spectrum disorder may be at increased risk of mental health difficulties. A support group is one approach to improve mental health outcomes for typically developing siblings. During support groups, typically developing siblings discuss their feelings, learn coping strategies and problem-solving skills, and develop a peer network. We conducted a randomized controlled trial comparing a support group to an attention-only social control group. Some areas of mental health improved. Autism spectrum disorder symptom severity in the sibling with autism spectrum disorder moderated effects. Findings suggest continuing to examine what areas of mental health and adjustment are improved with support groups and subgroups of typically developing siblings for whom support groups might be particularly effective. Lay abstract Typically developing siblings of a child with autism spectrum disorder may show mental health difficulties. A support group is one approach to help typically developing siblings. During support groups, typically developing siblings discuss their feelings, learn coping strategies and problem-solving skills, and develop a peer network. We compared a support group to participation in a similar group without a focus on the sibling with autism spectrum disorder. Some areas of mental health improved. Improvements were also impacted by autism spectrum disorder symptom severity in the sibling with autism spectrum disorder. Findings suggest continuing to examine how support groups can help typically developing siblings and for which siblings support groups might be particularly effective.

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.

scholarly journals Exploring the Experiences of Parents Whose Child has Received a Diagnosis of Autistic Spectrum Disorder in Adulthood

2022 ◽  
Author(s):  
Hannah Legg ◽  
Anna Tickle ◽  
Alinda Gillott ◽  
Sarah Wilde
Keyword(s):  
Autism Spectrum Disorder ◽  
Autistic Spectrum Disorder ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Sense Making ◽  
Support Needs ◽  
Structured Interviews ◽  
Relational Support ◽  
New Knowledge ◽  
Diagnostic Support

AbstractThere is a growing trend of adult diagnosis of Autism Spectrum Disorder (ASD). Research has found that diagnosis can prompt a process of sense-making which may be disrupted by lack of post-diagnostic support. Given the continued involvement of many parents in supporting their adult son or daughter with ASD, it is vital to understand their experiences to meet their needs in adapting to the diagnosis. Eleven parents of recently diagnosed adults participated in semi-structured interviews which were analysed thematically. Findings demonstrate that the new knowledge of diagnosis facilitates changes in attributions, interactions and relationships, but can result in unmet emotional and relational support needs. Findings are relevant to those involved in adult diagnosis, and the provision of post-diagnostic support.

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 Stress Factors and Child-rearing Practices in Somali-Canadian Mothers of Young Children Diagnosed with Autism Spectrum Disorder

2021 ◽  
Author(s):  
Fatima Kediye
Keyword(s):  
Autism Spectrum Disorder ◽  
Young Children ◽  
Financial Burden ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Stress Factors ◽  
Cultural Barriers ◽  
Child Rearing ◽  
Group Discussions ◽  
Negative Experiences

This study investigated stress factors and child-rearing practicess in Somali-Canadian mothers of young children (between 6 to 12 years of age) diagnosed with autism spectrum disorder. A grounded theory methodology was used for this study. Focus group discussions were held with 10 mothers residing in Toronto. Nine categories arose which were compiled into four themes 1) concerns and uncertainty over the child's development, 2) language and cultural barriers, 3) lack of resources and 4) financial burden. It was discovered that major stressors included lack of informal support, negative experiences from professionals, and financial challenges. The participants indicated that their major coping system was acceptance of their child's condition.

Self-reported motivations for offending by autistic sexual offenders

Autism ◽  
2019 ◽  
Vol 24 (2) ◽  
pp. 307-320 ◽  
Author(s):  
Katy-Louise Payne ◽  
Katie Maras ◽  
Ailsa J Russell ◽  
Mark J Brosnan
Keyword(s):  
Autism Spectrum Disorder ◽  
Sexual Offenders ◽  
Neurodevelopmental Disorder ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Central Coherence ◽  
Relationship Education ◽  
Structured Interviews ◽  
Sexual Offences ◽  
Effective Interventions

Autism spectrum disorder is a neurodevelopmental disorder estimated to have elevated prevalence in forensic populations (approximately 4.5%). It has been suggested that offenders with autism spectrum disorder engage more frequently in crimes against the person and sexual offences than other types of offences such as property, driving and drug offences. To date little is empirically known about the reasons why autistic individuals engage in sexual offences, yet understanding the motivation(s) for offending are key to developing and implementing effective interventions to help reduce both initial offending and also re-offending. In this study, semi-structured interviews were conducted with nine autistic sexual offenders in prisons and probation services across England and Wales. Thematic analyses revealed five main themes (social difficulties, misunderstanding, sex and relationship deficits, inadequate control and disequilibrium). Analyses indicated that social skills difficulties, lack of perspective/weak central coherence, misunderstanding the seriousness of their behaviours and a lack of appropriate relationships were the main reasons for offending reported by this group of autistic sexual offenders. Findings highlight a need to develop sex and relationship education interventions which are tailored to the needs of autistic individuals, to address both their reported reasons for offending and their reported lack of sexual knowledge and awareness.

scholarly journals To raise a child with autism spectrum disorder: A qualitative, comparative study of parental experiences in the United States and Senegal

2020 ◽  
pp. 136346152095334
Author(s):  
Adair Cardon ◽  
Tara Marshall
Keyword(s):  
Autism Spectrum Disorder ◽  
Community Support ◽  
The United States ◽  
Autism Spectrum ◽  
Cross Cultural ◽  
Spectrum Disorder ◽  
Cultural Perspective ◽  
Structured Interviews ◽  
Parental Experiences ◽  
American Families

Raising a child with Autism Spectrum Disorder (ASD) can often be a difficult and stressful process for families and caregivers. Though research on ASDs in Africa is burgeoning, very little is known about autism in francophone West Africa. Furthermore, no known ASD studies have explored parental experiences in particular from a cross-cultural perspective. This research used Interpretative Phenomenological Analysis to analyze in-depth, semi-structured interviews with seven Senegalese and seven American families to investigate parental experiences within the Senegalese community with further illustration by cross-cultural comparison. Comparative analysis of data across the two countries was undertaken to identify cultural variables previously unreported, especially those that may affect Senegalese family experience. Analysis of interviews revealed thematic differences in social and community support. Although access to effective treatment services was low among Senegalese families compared to the American families, traditional Senegalese household structures and community relations were hypothesized to serve as protective factors against the high social isolation and resulting logistical struggles reported in the U.S. sample. Further targeted research within the Senegalese environment is recommended, particularly to explore social stigma and its possible effects on families with autism, causal beliefs and treatment practices, and parental mental health and wellbeing.

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