Autism Spectrum Disorder in an Indian Context: Impact of Socioeconomic Factors on the Experiences of Individuals with ASD and Their Families

While Autism Spectrum Disorder (ASD) is a condition that appears in comparable rates across social, ethnic and geographic groups, the quality and quantity of ASD-related resources and services is significantly lower in developing countries, including India. Moreover, sociocultural factors play a major role in the experiences of people with ASD. Yet, the bulk of ASD-related research has been conducted in developed countries. This study aimed to examine how social, cultural, political and economic factors impact the experiences of people with ASD living in India and their families. Seventeen parents of children with ASD were interviewed, and semi-structured observations of different ASD-related organizations in Jaipur and New Delhi were conducted. This study found that socioeconomic and cultural factors did have a significant influence on ASD experiences. In India, very few appropriate ASD-related resources are available, much less accessible, to those who need them most. Moreover, stigma and lack of awareness further hinder quality and accessibility of treatment and intervention. While many non-governmental organizations are working to address these issues, their efforts are limited by lack of governmental support and funding

Preparing America's Children for Success in the 21st Century: Too Small to Fail

A joint initiative of Next generation and the Bill, Hillary & Chelsea Clinton Foundation, Too Small to Fail aims to help parents, caregivers, educators, communities and businesses take specific, meaningful and evidence-based actions to improve the health and well-being of america's youngest children, ages zero to five, and prepare them to succeed in the 21st century.Improving the health and well-being of america's youngest children isn't just the right thing to do -- it's the economically smart thing to do. Our nation's future, and our ability to compete in an increasingly globalized economy, depends on it. Research conducted over the past few decades and across multiple disciplines has shown that early health and learning directly impacts an individual's long-term productivity and success, and our country's economic well-being. Other countries, including emerging economies like India and China, are making substantial investments in the learning, health and care of their youngest children. Yet, in the United States, many children don't receive the basic nutrition they need in the earliest years of life. Many start kindergarten unprepared, lagging in critical skills from vocabulary acquisition and early numeracy to attention span and self-control. more and more grow up with chronic health conditions ranging from obesity to asthma to autism.This is no way to train the leaders, entrepreneurs and workers of tomorrow. What's worse, many parents don't realize that they can take specific actions in the first months and years of their child's life to insure their child's long-term success.That's the bad news. But there is good news, too. right now, more than at any moment in our history, we have the knowledge and tools to meet these challenges head-on. First, we know more than ever before about how early interactions and nutrition shape lifelong brain development, and we have proof that investments in health and well-being during a child's earliest years yield high social and economic returns. Second, new technologies and expanded access to existing tools make it easier to connect with parents and caregivers, provide them with useful information, and motivate them to act. Finally, there is a growing commitment and interest from government, business leaders, communities and parents to prioritize and support early childhood development.Too Small to Fail is founded on the principle that it will take all of us together to prepare our youngest Americans for success in the 21st century. government investment and policy changes are part of that equation, but not the whole solution. We believe that small acts can have a big impact on our kids.this moment in time presents a tremendous opportunity to communicate to all americans what child development experts have known for a long time: what we do for our kids matters -- not just to them, but to all of us

A participatory action research project on family needs: experiences of formal and informal support services available among Zambian families of children with autism spectrum disorders

Globally, there has been an escalation in the number of children diagnosed with Autism Spectrum Disorders (ASD). Despite the high prevalence rates, formal and informal support services for children with ASD in Lower and Middle-Income Countries are inadequate due to several challenges. The aim of the study was to understand the experiences of parents with formal and informal support services for families of children with ASD in Zambia and explores ways to address support needs by empowering parents using a PAR approach. The study employed a qualitative Participatory Action Research (PAR) design. A total of 76 participants were purposively sampled from both rural and urban districts of the Lusaka province of Zambia. The study was divided into two phases with phase one focusing on an inquiry into the nature of the problem while phase two was planned for action. In Phase one, a total of 73 participants were recruited— 50 community members and 23 professionals. Parents participated in nine focus group discussions (FGD) while 23 professionals were involved insemistructured interviews. Phase two activities included the five-action cycles in which 17 parents participated and formed a parent-led supported group. These parents worked together for six months to address the identified barriers to ASD. The five-action cycles generated were as follows; action cycle one—forming a parent-led support group; action cycle two—being involved in ASD awareness campaigns to higher institutions of learning; action cycle three— capacity building on how to educate a child with ASD; action cycle four—, being involved in ASD awareness in rural areas; action cycle five—publishing their stories in print media. Verbatim transcription was used and data was analysed thematically. Themes were distilled through interpretive description. The key findings in the study reveal that parents face many barriers to access formal and informal services. These barriers were compounded by scarcity of knowledge about ASD at parent, professional, and community levels. ASD diagnosis and treatment included exploring religious, traditional and western medical treatments. The study found that the ASD diagnostic tools used to confirm ASD diagnosis were not uniform, and often used by poorly trained professionals. Parent-initiated support groups appear to be a positive mechanism to promote ASD awareness in both rural and urban settings. Through a parent-led support group, participants gained empowerment skills as well as a better understanding of barriers to their children unmet needs. Further studies need to extend our understanding of how parents' involvement in PAR methodologies can be used to empower and shape the nature of services that they require in Low- and Middle-income Countries

Implementing the WHO caregivers skills training program with caregivers of autistic children via telehealth in rural communities

Background: For families with autistic children living in rural areas, limited access to services partly results from a shortage of providers and extensive travel time. Telehealth brings the possibility of implementing alternative delivery modalities of Parent Mediated Interventions (PMIs) with the potential to decrease barriers to accessing services. This study aimed to evaluate the feasibility and acceptability of implementing the World Health Organization-Caregivers Skills Training program (WHO-CST) via an online, synchronous group format in rural Missouri. Methods: We used a mixed methods design to collect qualitative and quantitative data from caregivers and program facilitators at baseline and the end of the program, following the last home visit. Caregivers of 14 autistic children (3-7 years), residents of rural Missouri, completed nine virtual sessions and four virtual home visits. Results: Four main themes emerged from the focus groups: changes resulting from the WHO-CST, beneficial aspects of the program, advantages and disadvantages of the online format, and challenges to implementing the WHO-CST via telehealth. The most liked activity was the demonstration (36%), and the least liked was the practice with other caregivers. From baseline to week 12, communication skills improved in both frequency (p \u3c 0.05) and impact (p \u3c 0.01), while atypical behaviors decreased (p \u3c 0.01). For caregivers\u27 outcomes, only confidence in skills (p \u3c 0.05) and parental sense of competence (p \u3c 0.05) showed a positive change. Conclusion: Our results support the feasibility of implementing the WHO-CST program via telehealth in a US rural setting. Caregivers found strategies easy to follow, incorporated the program into their family routines, and valued the group meetings that allowed them to connect with other families. A PMI such as the WHO-CST, with cultural and linguistic adaptations and greater accessibility via telehealth-plays an essential role in closing the treatment gap and empowering caregivers of autistic children

Promise in Infant-Toddler Care and Education

This special themed issue of the Occasional Paper Series seeks to highlight and challenge assumptions about infant-toddler care and education. In the Call for Papers, we specifically asked for critical analyses of the state of the field; for contributions from practitioners, policy researchers and policymakers, teacher educators, and colleagues from international contexts to interrogate the status quo. We were not surprised, however, when the papers submitted, with one exception, came from university researchers or faculty working with students. Caregivers and teachers of the youngest children are overwhelmingly women, often with families of their own, with limited time, support, or incentives to write about their experiences. Because of this, the focus for the issue that emerged from the submissions is more on policy and training than on the day-to-day experiences of the practitioners

Increasing Collaboration and Knowledge in School Communities to Enhance Outcomes for Autistic Students

Purpose This paper describes a case study of a developmental program evaluation on the Autism Community Toolkit, a collaborative skills training program for parents and school professionals. The purpose of this study was to examine the influence of the training on participants’ knowledge, competence and perceived collaboration; and potential improvements to the training program. Design/methodology/approach The program included multiple training sessions for families and school professionals, designed to educate participants on autism, evidence-based interventions and to increase home-school communication and collaboration. Data collection methods included pre- and post-measures and feedback forms. Findings Results indicated that the training program was beneficial for participants overall. Pre- and posttest measures indicated growth in knowledge and competency in autism interventions. While there were no statistically significant differences in the quantitative measure of collaboration, qualitative results suggest that participants reported increased collaboration posttraining. Practical implications Overall, the training program was effective, and the ongoing implementation assessment was conducive to continuous improvement. The authors also discuss difficulties with implementation and recommendations for future intervention implementation. Originality/value This case study provides practical information about creating, evaluating and improving a unique intervention designed to support school–home collaboration

The Caregiver Resilience Education (Ca.R.E.) program

Caregivers’ involvement in therapy is integral to the child’s engagement in therapy and their occupational performance outcomes (D’Arrigo et al., 2020b). Access to cost-effective, culturally relevant educational programs for caregivers of children with disability, who are oftentimes burdened with anxiety and stress due to society’s stigma, are limited in low-income and -resource settings like rural India (Angelin et al., 2021). Also compounding the problem are caregiver personal factors, environmental and contextual factors, and health care system factors (Brassart et al., 2017; Vadivelan et al., 2020). Caregiver Resilience Education (Ca.R.E.) is a group-based program comprising five modules that include approaches such as role-modeling, coaching, group discussions, collaborative goal-setting, and therapist modeling. The Ca.R.E. program culminates in the demonstration and formation of a caregiver support group to be facilitated by an occupational therapy practitioner. The mission of the Ca.R.E. program is to improve caregiver engagement and self-efficacy. Through the Ca.R.E. program, the author envisions empowered caregivers coming together to advocate for their children and themselves to combat occupational injustice in a community with the odds stacked against them