Lived experiences of siblings of individuals with Autism

Support System ◽

Support Services ◽

Lived Experiences ◽

Autism Spectrum ◽

Sibling Relationship ◽

Spectrum Disorder

<p>Research on the experiences of siblings of individuals with Autism Spectrum Disorder (ASD) is scarce. The current study included 14 siblings of individuals with ASD to study their lived experiences. Interpretative Phenomenological Analysis was used to identify the following six themes: (i) Processing and understanding the condition, (ii) Coping with challenging experiences, (iii) Positive aspects of the sibling relationship, (iv) Current and future roles, (v) Support system, and (vi) Needs and expectations. The findings revealed that siblings had poor awareness of ASD and their experiences were predominantly negative. However, siblings minimized their difficulties and needs, and focused more on the needs of the sibling with ASD. These findings have specific implications for support services for siblings of individuals with ASD.</p>

Lived Experiences of Siblings of Individuals with Autism Spectrum Disorder in India: An Interpretative Phenomenological Analysis

Indian Journal of Psychological Medicine ◽

10.1177/02537176211029111 ◽

2021 ◽

pp. 025371762110291

Author(s):

Poornima Viswanathan ◽

M. Thomas Kishore ◽

Shekhar P. Seshadri

Keyword(s):

Lived Experiences ◽

Autism Spectrum ◽

Sibling Relationship ◽

Spectrum Disorder ◽

Small Element ◽

The Family ◽

The Impact

Background: Autism spectrum disorder (ASD) can impact the individual and their families. The impact on siblings is unique because they evolve from being another child in the family to a future adult who can be a potential resource to the family in supporting a member with ASD. Since the quality of care and support can be affected by the lived experiences of the carer and there are not many studies on siblings, this study examined the lived experiences of siblings of individuals with ASD. Methods: Fourteen siblings of individuals with ASD, aged 15–36 years, were recruited from a tertiary hospital, schools, and private institutes. A semistructured interview schedule was used to explore the lived experiences. Interpretative phenomenological analysis (IPA) was used to identify the themes. Results: The themes based on IPA indicated that the siblings have very basic concerns like understanding the condition and complex issues such as coping, preparing for current and future roles, personal needs and expectations, need for a support system, and positive aspects of the sibling relationship. Nonetheless, the siblings minimized reporting their difficulties and focused more on the needs of the sibling with ASD. Conclusion: Siblings have diverse lived experiences, with a small element of positive experiences. Appropriate supports are needed to address the complexities of the lived experiences.

Fathering a Child with Autism Spectrum Disorder: An Interpretative Phenomenological Analysis

Indo-Pacific Journal of Phenomenology ◽

10.2989/ipjp.2013.13.1.5.1171 ◽

2013 ◽

Vol 13 (1) ◽

pp. 1-19 ◽

Cited By ~ 11

Author(s):

Claudia D. Martins ◽

Stephen P. Walker ◽

Paul Fouché

Keyword(s):

Autism Spectrum ◽

Spectrum Disorder

Complexity: An interpretative phenomenological analysis of the experiences of mothers of deaf children with cochlear implants and autism

Journal of Health Psychology ◽

10.1177/1359105316646171 ◽

2016 ◽

Vol 23 (9) ◽

pp. 1173-1184 ◽

Cited By ~ 3

Author(s):

Anat Zaidman-Zait ◽

Deirdre Curle

Keyword(s):

Cochlear Implants ◽

Cochlear Implantation ◽

Educational Practice ◽

Autism Spectrum ◽

Spectrum Disorder ◽

Deaf Children ◽

Childhood Deafness

The purpose of this study was to explore the experiences of parenting a child with a dual diagnosis of childhood deafness and autism spectrum disorder who underwent cochlear implantation. Experiences of these parents are rarely discussed within the literature. Interpretive Phenomenological Analysis was used to examine nine mothers of boys (4–9 years old) for understanding their parenting experiences. Three superordinate themes were identified: complexity, personal and family sacrifices and parent–professional partnerships. These themes provide a rich account of mothers’ interpretations of their experiences, and reflect the numerous challenges they face. This study helps expand the literature on cochlear implantation for children with autism spectrum disorder, and discusses implications for clinical and educational practice.

Implications of an Autism Spectrum Disorder Diagnosis: An Interview Study of How Physicians Experience the Diagnosis in a Young Child

Journal of Clinical Medicine ◽

10.3390/jcm7100348 ◽

2018 ◽

Vol 7 (10) ◽

pp. 348 ◽

Cited By ~ 3

Author(s):

Delphine Jacobs ◽

Jean Steyaert ◽

Kris Dierickx ◽

Kristien Hens

Keyword(s):

Clinical Practice ◽

Young Child ◽

Young Children ◽

Structured Interview ◽

Autism Spectrum ◽

Autism Spectrum Disorder Diagnosis

Spectrum Disorder ◽

Clinicians are significant translators and interpreters towards parents of the abundant literature on autism spectrum disorder (ASD). However, how clinicians experience and view ASD and an ASD diagnosis is not well known. Sixteen physicians working with young children with a (presumed) diagnosis of ASD participated in a semi-structured interview. They described their professional view on ASD and an ASD diagnosis, and how they experienced its use in their clinical practice. Interpretative phenomenological analysis of the data revealed two main topics about physicians’ experiences: how they view ASD and an ASD diagnosis, and how they experience the implications of an ASD diagnosis. The latter topic comprised three themes: (1) the ASD diagnosis leads to a particular treatment trajectory and services; (2) ambivalence about how the ASD diagnosis impacts parents and child; and (3) psycho-relational functions of the ASD diagnosis. Physicians feel that some doubts and questions are inevitable when dealing clinically with ASD and an ASD diagnosis. They also perceive that there are certain risks associated with assigning the categorical ASD diagnosis to a young child. Altogether however, ASD is perceived by physicians as a useful and valuable diagnosis both because of treatment related consequences and of several psycho-relational implications.

Adolescent boys with an autism spectrum disorder and their experience of sexuality: An interpretative phenomenological analysis

Autism ◽

10.1177/1362361315627134 ◽

2016 ◽

Vol 21 (1) ◽

pp. 75-82 ◽

Cited By ~ 20

Author(s):

Jeroen Dewinter ◽

Hanna Van Parys ◽

Robert Vermeiren ◽

Chijs van Nieuwenhuizen

Keyword(s):

Autism Spectrum ◽

Spectrum Disorder ◽

Adolescent Boys

Listening to Bedouin fathers of children with autism spectrum disorder

Transcultural Psychiatry ◽

10.1177/1363461518808148 ◽

2018 ◽

Vol 56 (2) ◽

pp. 345-358 ◽

Cited By ~ 2

Author(s):

Iris Manor-Binyamini

Keyword(s):

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.

“Es un regalo de Dios la verdad”: Hispanic Fathers Lived Experiences of Child with an Autism Spectrum Disorder

Journal of Latinos and Education ◽

10.1080/15348431.2021.1987911 ◽

2021 ◽

pp. 1-14

Author(s):

Tony Bobadilla

Keyword(s):

Lived Experiences ◽

Autism Spectrum ◽

Spectrum Disorder

Sibling Relationships, Personality Traits, Emotional, and Behavioral Difficulties in Autism Spectrum Disorders

Child Development Research ◽

10.1155/2019/9576484 ◽

2019 ◽

Vol 2019 ◽

pp. 1-9 ◽

Cited By ~ 1

Author(s):

C. Longobardi ◽

L. E. Prino ◽

F. G. M. Gastaldi ◽

T. Jungert

Keyword(s):

Sibling Relationships ◽

Autism Spectrum ◽

Sibling Relationship ◽

Spectrum Disorder ◽

Behavioral Difficulties ◽

Typically Developing ◽

Emotional Symptoms ◽

The Impact

This study focused on parents’ perceptions of the quality of sibling relationship and its association with some behavioral and emotional characteristics of the typically developing sibling. The participants were parents of children with autism spectrum disorder and typically developing siblings. The sample size was 43. The group comprised 14 fathers (32.6%) and 29 mothers (67.4%) aged 33–53 years (M=43.56; SD = 5.23). The parents completed measures of siblings’ emotional and behavioral difficulties, siblings’ personality, and sibling relationships and their impact on families and siblings. The results showed that behavioral difficulties such as emotional symptoms, conduct problems, hyperactivity/inattention, and peer relationship problems were significantly associated with negative sibling relationships—characterized by rivalry, aggression, avoidance, and teaching behavior toward the brother or sister with an autism spectrum disorder. The implications are that sibling-focused interventions should focus on improving negative sibling relationships to reduce the impact on the difficulties of the typical development of the sibling of both genders and shape the content and delivery framework accordingly. This can be done by providing skills and approaches for enhancing sibling relationships so both parties benefit.

Indigenous Australians with autism: A scoping review

Autism ◽

10.1177/1362361319894829 ◽

2020 ◽

Vol 24 (5) ◽

pp. 1031-1046 ◽

Cited By ~ 1

Author(s):

Benjamin Bailey ◽

Joanne Arciuli

Keyword(s):

Support Services ◽

Torres Strait Islander ◽

Service Providers ◽

Autism Spectrum ◽

Spectrum Disorder ◽

Indigenous Australians ◽

Torres Strait Islander People ◽

Provider Perspectives ◽

Torres Strait

Aboriginal and Torres Strait Islander people with autism spectrum disorder, used interchangeably with the term autism, are among the most marginalised people in Australian society. This review maps out existing and emerging themes in the research involving Indigenous Australians with autism based on a search of the peer-reviewed and grey literature. Our search identified 1457 potentially relevant publications. Of these, 19 publications met our inclusion criteria and focused on autism spectrum disorder diagnosis and prevalence, as well as carer and service provider perspectives on autism, and autism support services for Indigenous Australians. We were able to access 17 publications: 12 journal articles, 3 conference presentations, 1 resource booklet and 1 dissertation. Findings suggest similar prevalence rates for autism among Indigenous and non-Indigenous Australians, although some Aboriginal and Torres Strait Islander people with autism may not receive a diagnosis or may be misdiagnosed. Research on the perspectives of Aboriginal and Torres Strait Islander carers and Indigenous and non-Indigenous service providers is discussed in relation to Indigenous perspectives on autism, as well as barriers and strategies to improve access to diagnosis and support services. Although not the focus of our review, we briefly mention studies of Indigenous people with autism in countries other than Australia. Lay Abstract Aboriginal and Torres Strait Islander people with developmental disabilities such as autism are among the most marginalised people in Australian society. We reviewed research involving Indigenous Australians with autism based on a search of the peer-reviewed and grey literature. Our search identified 1457 potentially relevant publications. Of these, 19 publications were in line with our main areas of inquiry: autism spectrum disorder diagnosis and prevalence, carer and service provider perspectives on autism, and autism support services. These included 12 journal publications, 3 conference presentations, 1 resource booklet and 1 thesis dissertation. Findings suggest similar prevalence rates for autism among Indigenous and non-Indigenous Australians, although some Aboriginal and Torres Strait Islander people with autism may not receive a diagnosis or may be misdiagnosed. We also discuss research on the perspectives of Aboriginal and Torres Strait Islander carers and Indigenous and non-Indigenous service providers, as well as barriers and strategies for improving access to diagnosis and support services.