The WHO estimates that 1 in 100 children have autism or autism spectrum disorder (ASD). However, some studies reveal that numbers may be noticeably higher because there is little clarity about the prevalence of autism in low- and middle-income nations.
Children with this neurological and developmental disorder usually have communication and social interaction challenges, have sensory issues, restricted interests, and may need to repeat words and actions. They may display intense tantrums or stereotyping behaviours (stimming) as a way of coping. And they may also demonstrate verbal or physical abuse and destructive or even self-harm behaviours. Regardless of the type of society or living conditions, such behaviours make it extremely challenging for parents to care for their children. It also makes it hard for the child to integrate into the community. As a result, children with ASD and their parents may face discrimination and exclusion from their society.
Like any other child, children with ASD require access to healthcare and education, albeit at different levels. Due to behaviours such as poor eating habits and physical inactivity, they may be more prone to acquiring chronic non-communicable diseases. Furthermore, some children with ASD require assistance with daily living activities, medical treatment for comorbid illnesses, and interventions to cope with behaviours.
Children with ASD in Mongolia
Low resource settings (LRS) relate to regions, commonly in low- and middle-income nations, where parents lack the necessary resources to care for their disabled children properly. Lee et al. defined an LRS as having the following:
- Low income
- Limited stakeholder access to services
- Strong stigma associated with impairments
- Financial burden for treatment
Based on the above outline of LRS, Mongolia is identified as an LRS. It is classified as a Lower Middle Income Country by the World Bank, with an estimated 28.4% of the population living below the poverty line. The Japan International Cooperation Agency reported limited availability of quality services for parents with children with ASD. Children with ASD are much more disadvantaged compared to their neurotypical peers, with fewer opportunities for public education, health, and acceptable standards of living.
Parental Problems in Low Resource Settings
Due to the lack of resources and inadequate social and financial support, parents of children with ASD experience increased difficulties in parenting. The stress levels experienced by the parents may lead to the increased use of harsh discipline methods, which increase the occurrence of child’s disruptive behaviours.
Furthermore, the stigma associated with ASD may lead to discrimination from society and the community. Chan et al. found through their longitudinal study that discrimination impacts parental depression, harsh parenting, and co-parenting conflict (2022). These findings imply that interventions which help and support parents by equipping them with knowledge of ASD and parenting strategies, may lower their levels of stress and reduce the formation of child disruptive behaviours.
Parents in Mongolia acknowledged a need for training to improve their capacity to better support and appropriately care for their children in response to the lack of treatment alternatives available in their nations.
Parent Peer Coaching in Low Resource Setting – Mongolia
Learning how parenting interventions successfully lowered stress levels and depressive symptoms in parents while simultaneously increasing parental knowledge of autism and life quality, , Lee et al. examined the use of a parent-peer coaching program in Mongolia.
The purpose of such parenting interventions is to facilitate capacity building in parents of children with ASD. This is achieved by enhancing knowledge and skills, developing community cohesion, and improving infrastructure.
In this parent-peer coaching program, Parent Peers and Parent Mentors were paired up. The program started with an online training in behavioural management and social communication strategies for parent peers, and mentors. Implemented in a cascading manner, parent mentors went on to receive training in coaching, to provide consultation or to become a “reliable ally” to the parent peer.
After the training, parent peers delivered the evidence-based practices to their children, with the support of parent mentors who coached them once or twice a week for 20 minutes. Parent mentors focused on coaching social-communication strategies only.
The Outcome of Parent Peer Coaching Program in Mongolia
Results from the Mongolia study matched those of prior studies. The researchers, Lee et al., reported that parents in the study enjoyed and felt the importance of peer support in their parenting journey. Parent peers felt more confident and experienced more self-efficacy in their parenting journey.
After receiving coaching, parent mentors also experienced increased self-efficacy and felt more confident in their parenting capacity. Those who coached felt confident and were motivated to continue coaching. They went on to provide regular consultations within their local NGOs and help other parents by seeking resources, sharing personal experiences, and providing emotional support.
The use of online platforms was seen as a facilitator to the program; it is convenient and saves travelling time. In fact, parents reported a preference for coaching through telepractice. However, parents also mentioned that complementing online sessions with in-person meetings may be helpful.
Benefits of the Cascading Parent Peer Coaching Program
The results of this study demonstrated the effectiveness of transferring knowledge and skills via the cascading coaching model in an LRS like Mongolia. Evidence-based practices and information were transferred vertically (from trainers to the parent mentors) and horizontally (from parent mentor to parent peer). Especially when parents share and exchange similar experiences, this can create a pool of “mentors” in LRS who may be able to coach other parents in the future. Given the high degree of coaching fidelity observed across all parent mentors, it is highly likely that these parents will retain the abilities and information gained from this intervention.
By delivering the training sessions via online platforms, the program has the potential to reach out to and support parents located in LRS who face challenges with accessibility. It also gave parents the convenience of attending training sessions wherever they were.
Parents were comfortable with online training, and they felt that they were able to learn effectively. As a result, parents reported increased confidence in parenting and experienced less parental stress. These results were also found in another study by Meadan et al. where parents who were trained and coached over the internet demonstrated fidelity in implementing teaching strategies for their children with ASD (2016). These results point to the viability of training parents in LRS over the internet.
The presence of a parent mentor as a coach also improved peer support and developed the sense of community. Mentors with increased coaching fidelity were motivated to continue coaching, while parent peers appreciated the support. The presence of an accepting community plays a role in mediating parental stress, especially when parents of children with ASD often experience discrimination.
Parenting Intervention Programs
Parents, as the primary caregivers of children with ASD, often face challenges in their parenting journey. Parenting intervention programs can support parents by increasing their knowledge and skills, which increases parents’ self-efficacy, while providing intervention and support for children with ASD.
Studies of parenting interventions report improvement in parents’ emotions, greater self-efficacy, and feelings of support from peers and professionals. Besides giving parents a deeper understanding of ASD and teaching them skills and strategies, parents felt more accepting of their child’s diagnosis and even hopeful about their child’s progress.
Although parent peer coaching programs and parenting intervention programs have the potential to improve parental and children’s behavioural outcomes, they still cannot replace professional services. However, for LRS like Mongolia, where resources are limited, and there is low accessibility to professional services, parent peer coaching programs can be a good supplement. This may also benefit other areas with shortages of professionals and services.
Understand more about Children with ASD and Autism in Asia:
- Benefits of Exercise on Sleep and Behaviour
- How Music Affects Speech
- How Face Perception Affects Social Skills
- Food and Nutrition Matters
- Autism in Asia: Parent Training Program in China
- Autism in Asia: Impact of Parents’ Discrimination on Children’s Symptoms in Hong Kong
Chan, K. K. S., Leung, D. C. K., & Fung, W. T. W. (2022). Longitudinal impact of parents’ discrimination experiences on children’s internalizing and externalizing symptoms: A 2-year study of families of autistic children. Autism, 0(0). https://doi.org/10.1177/13623613221093110
Dababnah, S., & Parish, S. L. (2016). Feasibility of an empirically based program for parents of preschoolers with autism spectrum disorder. Autism, 20(1), 85–95. https://doi.org/10.1177/1362361314568900
Fang, Z., Lachman, J. M., Zhang, C., Qiao, D., & Barlow, J. (2022). A virtuous circle: Stakeholder perspectives of a short-term intensive parent training programme delivered within the context of routine services for autism in China. Autism, 26(8), 1973–1986. https://doi.org/10.1177/13623613211070869
Lee, J. D., Meadan, H., & Oyunbaatar, E. (2022). Parent peer coaching program: A cascading intervention for parents of children with autism in Mongolia. Autism, 26(8), 1999–2014. https://doi.org/10.1177/13623613211070636
Liu, Q., Hsieh, W.-Y., & Chen, G. (2020). A systematic review and meta-analysis of parent-mediated intervention for children and adolescents with autism spectrum disorder in mainland China, Hong Kong, and Taiwan. Autism, 24(8), 1960–1979. https://doi.org/10.1177/1362361320943380
Meadan, H., Chung, M. Y., Sands, M. M., & Snodgrass, M. R. (2020). The Cascading Coaching Model for Supporting Service Providers, Caregivers, and Children. The Journal of Special Education, 54(2), 113–125. https://doi.org/10.1177/0022466919884070
Meadan, H., Snodgrass, M. R., Meyer, L. E., Fisher, K. W., Chung, M. Y., & Halle, J. W. (2016). Internet-Based Parent-Implemented Intervention for Young Children With Autism. Journal of Early Intervention, 38(1), 3–23. https://doi.org/10.1177/1053815116630327
Mongolia | Data. (n.d.). https://data.worldbank.org/country/mongolia
Mongolia – The World Factbook. (n.d.). https://www.cia.gov/the-world-factbook/countries/mongolia/
Shawler, P. M., & Sullivan, M. A. (2017). Parental Stress, Discipline Strategies, and Child Behavior Problems in Families With Young Children With Autism Spectrum Disorders. Focus on Autism and Other Developmental Disabilities, 32(2), 142–151. https://doi.org/10.1177/1088357615610114
The Project for Strengthening Teachers’ Ability and Reasonable Treatments for Children with Disabilities (START) | Technical Cooperation Projects | JICA. (n.d.). https://www.jica.go.jp/project/english/mongolia/013/index.html