Children with Autism Spectrum Disorders in Low-Resource Settings: Reported Experiences and Needs of Parents in Mongolia

Lee, James; Meadan, Hedda

doi:10.1007/s10803-020-04818-4

Cited by 9 publications

(51 citation statements)

References 31 publications

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“…These included a lack of belief in autism as a diagnosis, believing the diagnosis was temporary, and/or recommendations from family members to use alternative or more traditional forms of healing rather than support services (Blanche et al, 2015;Fox et al, 2017;Sakai et al, 2019;Shanmugarajah et al, 2022;Stahmer et al, 2019). Conversely, parents reported that the provision of parent education, specifically education which increased an understanding of autism, facilitated their participation within support services and/or informed the way they parented their child (Chlebowski et al, 2018;Fox et al, 2017;Lee & Meadan, 2021;Nilses et al, 2019;Pearson & Meadan, 2018;Stahmer et al, 2019). Limited availability of relevant information also hampered parents' efforts to gain support services for their child.…”

Section: Thematic Analysismentioning

confidence: 99%

Barriers and facilitators for obtaining support services among underserved families with an autistic child: A systematic qualitative review

Wallace-Watkin

Sigafoos

Waddington

2022

Autism

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Families of autistic children from underserved populations participate in support services at lower rates than other families. To better understand possible reasons for this inequity, we reviewed qualitative studies examining parent-reported barriers and facilitators to accessing and participating in support services. A systematic search identified 18 articles that met inclusion criteria. Resulting thematic analysis located three themes: (a) support service accessibility, (b) diversity of support services, and (c) community. Parents reported that financial pressures, geographic location, and service flexibility influenced their ability to obtain support services. Implications for service delivery and areas for future research are discussed. Lay abstract Families from underrepresented ethnic or racial groups and those with limited financial resources could experience more difficulty in accessing support services for their autistic child due to certain types of barriers. We searched academic journals, websites, and other sources for studies which looked at what barriers might be present for such families and what might help families access support services for their autistic child. The search found 18 studies. Results from each study were examined and coded into themes. Parents reported that accessibility, diversity of support services, and stigma influenced their experiences with support services. We discuss what these findings might mean for future research and for service delivery.

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Section: Thematic Analysismentioning

confidence: 99%

Barriers and facilitators for obtaining support services among underserved families with an autistic child: A systematic qualitative review

Wallace-Watkin

Sigafoos

Waddington

2022

Autism

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“…researcher to parents). Considering the low level of access to professionals in LRS (Divan et al, 2021; Lee & Meadan, 2021b), intervention delivery that utilizes parents, NGOs, and other local stakeholders must be examined further to mitigate the notorious research-to-practice gap in autism research and disparities in accessing services that are highlighted in LRS. Notably, two of the four PMs reported that they regularly provide consultations to other parents within their NGO, which includes helping with seeking resources for their children, sharing their own childrearing experience, or providing emotional support.…”

Section: Discussionmentioning

confidence: 99%

“…In a qualitative study with 30 Mongolian parents of children with autism (Lee & Meadan, 2021b), parents reported that they would benefit from training to increase their capacity to address their children's needs, and that they believed they would be capable of carrying out interventions for their children with proper support. They also positively reported their interactions with other parents and that they benefited from consultations with other parents in the non-governmental organizations (NGOs).…”

Section: Mongoliamentioning

confidence: 99%

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Parent peer coaching program: A cascading intervention for parents of children with autism in Mongolia

Lee

Meadan

Oyunbaatar

2022

Autism

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Parents of children with autism in low-resource settings have reported exacerbated difficulties related to raising their children. In this single-case research using multiple probe design, four parent mentors and five parent peers and their children with autism in Mongolia participated in the parent peer coaching program. The intervention package, including training and coaching in evidence-based practices, was delivered via telepractice. Parent mentors completed online training and were coached by a bilingual and bicultural research assistant in a staggered fashion. Visual analysis revealed a functional relation between the intervention package and the coaching fidelity of parent mentors. Social validity data indicated that all participants were satisfied with the program and reported it was acceptable, feasible, and effective. Implications for conducting intervention research in a low-resource setting are described. Lay abstract Parents of children with autism are known to experience severe hardships related to raising their children. These hardships are exacerbated in low-resource settings internationally where there is very little resource for children and their families, including professionals who provide evidence-based treatment. Mongolia was chosen as an example of such low-resource settings in this single-case research, and four parent mentors and five parent peers and their children with autism participated and completed the study. A local parent group, the Autism Association of Mongolia, was actively involved in this study and helped with recruitment, development, adaptation, and implementation of the intervention to increase acceptability and feasibility. In addition, a local bilingual research assistant was also utilized as the purpose of this study was to build capacity of diverse stakeholders of children with autism in Mongolia. The research assistant was trained and coached by the research team on both content (communication teaching strategies and behavior management) and delivery (coaching adults), who then provided coaching to parent mentors via live videoconferencing in Mongolian. Parent mentors then similarly provided coaching to parent peers after observing the interactions with their children with autism. The findings suggest that parents can effectively deliver high-fidelity coaching to disseminate evidence-based treatment in low-resource settings when given proper training and coaching. Further examination on scalability and sustainment of effects is suggested.

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“…Language difficulties, epilepsy, and other problems may come with ASD ( Yasuhara, 2010 ; Sivapalan and Aitchison, 2014 ). The prevalence of ASD in the United States has grown from 1 in 110 to 1 in 69 over 4 years (from 2008 to 2012) ( Lee and Meadan, 2021 ). Approximately 1% of the world’s population was diagnosed with ASD, and its prevalence among males is four times higher than among females ( World Health Organization, 2013 ; Gao K. et al, 2021 ).…”

Section: Introductionmentioning

confidence: 99%

Machine learning for autism spectrum disorder diagnosis using structural magnetic resonance imaging: Promising but challenging

Bahathiq

Banjar

Bamaga

et al. 2022

Front. Neuroinform.

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Autism spectrum disorder (ASD) is a complex neurodevelopmental disorder that affects approximately 1% of the population and causes significant burdens. ASD’s pathogenesis remains elusive; hence, diagnosis is based on a constellation of behaviors. Structural magnetic resonance imaging (sMRI) studies have shown several abnormalities in volumetric and geometric features of the autistic brain. However, inconsistent findings prevented most contributions from being translated into clinical practice. Establishing reliable biomarkers for ASD using sMRI is crucial for the correct diagnosis and treatment. In recent years, machine learning (ML) and specifically deep learning (DL) have quickly extended to almost every sector, notably in disease diagnosis. Thus, this has led to a shift and improvement in ASD diagnostic methods, fulfilling most clinical diagnostic requirements. However, ASD discovery remains difficult. This review examines the ML-based ASD diagnosis literature over the past 5 years. A literature-based taxonomy of the research landscape has been mapped, and the major aspects of this topic have been covered. First, we provide an overview of ML’s general classification pipeline and the features of sMRI. Next, representative studies are highlighted and discussed in detail with respect to methods, and biomarkers. Finally, we highlight many common challenges and make recommendations for future directions. In short, the limited sample size was the main obstacle; Thus, comprehensive data sets and rigorous methods are necessary to check the generalizability of the results. ML technologies are expected to advance significantly in the coming years, contributing to the diagnosis of ASD and helping clinicians soon.

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Children with Autism Spectrum Disorders in Low-Resource Settings: Reported Experiences and Needs of Parents in Mongolia

Cited by 9 publications

References 31 publications

Barriers and facilitators for obtaining support services among underserved families with an autistic child: A systematic qualitative review

Barriers and facilitators for obtaining support services among underserved families with an autistic child: A systematic qualitative review

Parent peer coaching program: A cascading intervention for parents of children with autism in Mongolia

Machine learning for autism spectrum disorder diagnosis using structural magnetic resonance imaging: Promising but challenging

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