What it Takes to Raise Children with Autism in a Rural State

Singh, Reshmi L.; Moody, Eric J.; Rigles, Bethany; Smith, Ella Thea

doi:10.1007/s41252-018-0082-4

Cited by 10 publications

(13 citation statements)

References 45 publications

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“…Raising awareness about ASD, educating others, and supporting other parents in their journeys is important for parents that is echoed by others. 38 …”

Section: Discussionmentioning

confidence: 99%

“I Know How to Advocate”: Parents’ Experiences in Advocating for Children and Youth Diagnosed With Autism Spectrum Disorder

Smith-Young

Chafe

Audas

et al. 2022

Health�Serv�Insights

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Background: Parental advocacy is a dynamic process that changes depending on the circumstances and needs of the child and parent. Communication deficits related to an Autism Spectrum Disorder (ASD) diagnosis often necessitate parental advocacy. This study describes how parents and caregivers of children and youth diagnosed with ASD engage in parental advocacy, the challenges they encounter and the advocacy skills they develop. Method: We used descriptive exploratory methodology informed by reflexive thematic analysis. The aim of the study was to explore advocacy in parents and caregivers of children and youth diagnosed with ASD. Results: We conducted in-depth, semi-structured interviews with 15 parents of children and youth with an ASD diagnosis living in 4 provinces of Atlantic Canada. The pathway in parents’ advocacy journey included: (1) Expressing concerns; (2) Seeking help, assessment, and diagnosis; (3) Acquiring services; (4) Removing barriers; and (5) Developing advocacy skills. Conclusions: Our findings illustrate the process of parental advocacy, skill development, and the barriers parents encounter in advocating for their children with ASD. Future research might explore how health professionals can support parents’ advocacy efforts.

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“…Raising awareness about ASD, educating others, and supporting other parents in their journeys is important for parents that is echoed by others. 38 …”

Section: Discussionmentioning

confidence: 99%

“I Know How to Advocate”: Parents’ Experiences in Advocating for Children and Youth Diagnosed With Autism Spectrum Disorder

Smith-Young

Chafe

Audas

et al. 2022

Health�Serv�Insights

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“…Address the specific needs related to the context of rurality, specifically regarding access to providers, reducing waitlists, and enhancing collaboration and communication between all members of the early intervention team, especially as services change and evolve (Decker et al, 2020, 2021; Mann & Williams, 2011; Singh et al, 2019).…”

Section: Discussionmentioning

confidence: 99%

“…• • Address the specific needs related to the context of rurality, specifically regarding access to providers, reducing waitlists, and enhancing collaboration and communication between all members of the early intervention team, especially as services change and evolve (Decker et al, 2020(Decker et al, , 2021Mann & Williams, 2011;Singh et al, 2019). • • Recruit, hire, and retain providers with specialized training (and/or provide that training), specifically aimed at how to work with families throughout transitions (Douglas et al, 2022;Murphy et al, 2013;Podvey et al, 2013).…”

Section: Conclusion and Practical Implicationsmentioning

confidence: 99%

“…Existing research on transitions in Part C has traditionally focused on outcomes related to formal transitions within and between intervention systems (Douglas et al, 2021; Gothberg et al, 2017; Malone & Gallagher, 2009; Podvey et al, 2010; Rous et al, 2007), rarely also exploring the informal transitions and everyday changes that family experience during their children’s early years (Hebbeler & Spiker, 2016). Furthermore, since families living in rural areas frequently face barriers to accessing services (Cummings et al, 2017; Decker et al, 2020, 2021; Elpers et al, 2016; Hallam et al, 2009; Mann & Williams, 2011; Murphy et al, 2013; Singh et al, 2019), these families may also face additional barriers during times of transitions. Therefore, this study asks: For families in a Western rural state who have young children with exceptionalities, what are parents’ experiences of transitions over time?…”

Section: Transitions During the Early Yearsmentioning

confidence: 99%

“…The location in which families live, such as how urban or rural an area is, may also influence their experiences of Part C services and/or transitions over time (Decker et al, 2020(Decker et al, , 2021Elpers et al, 2016;Hallam et al, 2009;Murphy et al, 2013;Singh et al, 2019). The U.S. Census Bureau defines rurality as areas that have populations of 50,000 residents or less (Ratcliffe et al, 2016).…”

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confidence: 99%

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“Press On, Continue On”: Rural Parents’ Experiences of Transitions Within Early Intervention

Decker

Feigel

Foster

et al. 2022

Rural Special Education Quarterly

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Although all families experience a variety of transitions over time, families of children with exceptionalities tend to encounter more transitions during their children’s earliest years. Transitions can be stressful and often include changes as part of early intervention or special education services. It is important to understand these transitions because the support families receive can influence child and family well-being. Therefore, we interviewed parents ( N = 28) across a rural state about their experiences of transition over time. Using thematic analysis, three common themes emerged: (a) change is constant, (b) positive relationships support changing needs and priorities, and (c) parents need more support, information, or access to services or providers. Parents reported relationships and collaboration with providers to be important, yet insufficient, in supporting transitions. Rurality added some challenges to parents’ experiences with transition. Recommendations include empowering families, providing more access and/or removing barriers to services, and building family efficacy through family-focused services.

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Understanding Legislation, Health Insurance, and Disparities in Service Provision in Autism Early Intervention

Bottema‐Beutel

Cuda

Kim

2020

Best Practices in Child and Adolescent Behavioral Health Care

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What it Takes to Raise Children with Autism in a Rural State

Cited by 10 publications

References 45 publications

“I Know How to Advocate”: Parents’ Experiences in Advocating for Children and Youth Diagnosed With Autism Spectrum Disorder

“I Know How to Advocate”: Parents’ Experiences in Advocating for Children and Youth Diagnosed With Autism Spectrum Disorder

“Press On, Continue On”: Rural Parents’ Experiences of Transitions Within Early Intervention

Understanding Legislation, Health Insurance, and Disparities in Service Provision in Autism Early Intervention

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