Cultural adaptation of an intervention for caregivers of young autistic children: Community members' perspectives.

Caregivers of autistic children in low-to-middle-income countries experience many barriers to access resources to support their child's development. Caregiver training is considered an evidence-based practice and may be a cost-effective way to support caregivers of autistic children in such settings. This study focuses on the cultural adaptation of Parents Taking Action (PTA; Magaña et al., Family Process, 56, 57-74, 2017) to support caregivers of autistic children in Paraguay. We conducted focus groups and individual interviews with 28 caregivers, autistic individuals, and professionals in Paraguay to understand caregivers' needs and to explore needed cultural adaptations of PTA to achieve contextual fit. Participants identified caregivers' need for accurate and reliable information, strategies to support children's growth, and emotional support and strategies to manage stress. Additionally, participants provided recommendations for adapting PTA considering the dimensions within the Cultural Adaptation Checklist (Lee et al., International Journal of Developmental Disabilities, 2023). This study is the first step in the iterative process of culturally adapting an intervention and the process described in this study may be appropriate for culturally adapting other interventions.

Challenging Behaviors Online Modules for Parents of Young Children with Disabilities: A Pilot Feasibility Study.

Challenging behaviors exhibited by young children negatively affect development and may also prevent children from receiving appropriate education. These behaviors may also hinder positive family interactions and have a significant impact on parents and other family members. Although various parent training approaches exist to increase parents' capacity to address these challenging behaviors, many parents are reportedly not able to access training due to time and resource constraints. To address inequitable dissemination of information, we developed and piloted the use of the Challenging Behavior Online Modules with 10 parents of children with disabilities. In particular, we examined the feasibility of the Challenging Behavior Online Modules for increasing parents' knowledge and use of positive parenting practices with their young children. Parents reported satisfaction with the contents and delivery method of the intervention. Implications and directions for future research are also suggested.

A Successful Kindergarten Transition for Children with Disabilities: Collaboration Throughout the Process.

The transition to kindergarten can be a memorable, yet stressful time for children and families. For children with disabilities and their caregivers, the transition to kindergarten can be especially difficult due to changes in environment, supports, and services that occur as part of the transition. The purpose of this article is to highlight specific practices and strategies that can enhance collaboration throughout the transition to kindergarten. Fictional vignettes are used to describe the perspectives of, and also the practices and strategies used by, members of an education team as they support a child with a disability and her caregiver. Readers are provided with examples of practices and planning tools that can be used to support children with disabilities throughout the transition to kindergarten process. High-intensity transition practices and strategies that can be used before, during, and after kindergarten transition are specifically highlighted. Additionally, the need for both preschool and kindergarten collaboration and support is emphasized. Supplementary Information: The online version contains supplementary material available at 10.1007/s10643-021-01246-6.

A boy and his AAC team: building instructional competence across team members.

Families and education professionals face unique challenges when working together to support augmentative and alternative communication (AAC) for a child who does not use speech and has only prelinguistic forms of communication. For this study, a family-school team was provided with a specially designed support package comprising training and one-on-one coaching in evidence-based instructional strategies. As part of a larger mixed methods investigation, a single-case experimental design was conducted to explore the effectiveness of the support package on facilitating team members' competence in AAC instruction and communication. In the case reported here, the support package improved instructional competence across all team members, which led to small, positive changes in the child's communication using AAC. However, it was not sufficient for overcoming contextual barriers and supporting adults' ongoing instructional adjustment to the level necessary to promote the child's independent communication via AAC. Implications of these findings for both practice and research are discussed.

It's our job to bridge the gap: Perspectives of bilingual autism providers on heritage language care.

LAY ABSTRACT: In the United States, many people have heritage languages they speak in their homes other than English, such as Chinese or Spanish. Autistic children whose families speak different languages could benefit from support and teaching in their heritage languages. Still, caregivers have reported that it is challenging to do so. Many autism professionals make suggestions that are not based on research. To date, researchers have not examined the perspectives of the small group of bilingual professionals in the United States who provide bilingual support for autistic children. Therefore, this study explored how bilingual autism providers in the United States talked about their work, bilingualism, and the impacts their bilingual work has on autistic children and families. The bilingual providers in this study reported many positive outcomes for autistic children when they can learn and use their heritage languages and some negative outcomes when providers cannot communicate in the same language. Recommendations from this study highlight the need to recruit more bilingual providers in the field of autism.

Parent-to-parent support among parents of children with autism: A review of the literature.

LAY ABSTRACT: Parents of autistic children have long reported feelings of isolation and increased stress during and after receiving their child's diagnosis. Increasing global prevalence of autism also calls for increased services and supports to meet the needs of these families, but most parents who live in low-resource settings still report exacerbated barriers. This may indicate the need for diversifying intervention delivery models to increase contextual fit and enhance implementation effects for different populations. For example, many parents have reported parent-to-parent (P2P) model to be a source of emotional support, advocacy, and knowledge related to their child's diagnosis, and practical advice. However, little is known about this topic due to the lack of synthesis of relevant autism literature. To address this gap, we conducted a literature review to gain a deeper understanding of how P2P support is used. We identified 25 studies based on our inclusion and exclusion criteria, which we coded to extract variables such as demographic information of participants, types of P2P, dosage, target outcomes, and social validity. About half of studies focused on providing support groups for parents, and the other half focused on individual matching and mentoring for skill acquisition of parents. Across the included 25 studies, a total of 141 parents participated as parent mentors and 747 parents as parent mentees. We also present implications for future research.

Demographic and autism characteristics as predictors of age of autism diagnosis of individuals with autism in Paraguay.

LAY ABSTRACT: Autism is a lifelong condition characterized by repetitive behaviors and social communication differences. The reported cases of autism increased globally in the past years. Detecting autism early and providing appropriate supports promptly are crucial for better outcomes. Yet, little research focuses on what factors interplay in the diagnostic process of autistic children in Paraguay. We gathered data from 176 caregivers of autistic children under 18 years in Paraguay. Through a detailed analysis, we found that child's age, child's age at the caregiver's first concerns about their development, and the child's verbal skills are key in predicting the age of autism diagnosis in Paraguay. Educating caregivers and professionals about autism and social communication development can help identify autism early and provide timely support.

Correlation Between Gaze Behaviors and Social Communication Skills of Young Autistic Children: A Meta-Analysis of Eye-Tracking Studies.

This meta-analysis examined correlations between eye-tracking measures of gaze behaviors manifested during dynamic salient social stimuli and behavioral assessment measures of social communication skills of young autistic children. We employed a multilevel model with random effects to perform three separate meta-analyses for correlation between social communication skills and (a) all gaze behaviors, (b) gaze duration, and (c) gaze transition. Subsequently, we performed meta-regression to assess the role of four moderators, including age, continuum of naturalness of stimuli, gaze metric, and area of interest, on correlation effect sizes that were heterogeneous at the population level. A total of 111 correlation coefficients from 17 studies for 1132 young autistic children or children with high-likelihood for autism (Mage range = 6-95 months) were included in this meta-analysis. The correlation effect sizes for all three meta-analyses were significant, supporting the relation between improved gaze behaviors and better social communication skills. In addition, age, gaze metric, and area of interest were significant moderators. This suggests the importance of identifying meaningful gaze behaviors related to social communication skills and the increasingly influential role of gaze behaviors in shaping social communication skills as young autistic children progress through the early childhood stage. The continuum of naturalness of stimuli, however, was revealed to trend towards having a significant moderating effect. Lastly, it is important to note the evidence of potential publication bias. Our findings are discussed in the context of early identification and intervention and unraveling the complex nature of autism.

Siblings Supporting the Social Interactions of Children Who Use Augmentative and Alternative Communication.

PURPOSE: The purpose of this study was to examine the effectiveness of a training and coaching program aimed to increase the use of the aided language modeling (ALM) strategy by siblings to support the social interactions of children with disabilities who use augmentative and alternative communication (AAC) in the natural environment. METHOD: A single-case, multiple-probe design that included a training and coaching intervention was implemented to teach four typically developing siblings to use the ALM strategy with high fidelity with their sibling who used AAC. In addition, a second research question investigated the rate at which siblings used the ALM strategy with the child. RESULTS: Results revealed that the sibling training and coaching was (a) effective in increasing high fidelity of the siblings' implementation of the ALM strategy and (b) participants and family members found the intervention to be impactful and meaningful. CONCLUSIONS: The changes observed throughout this study demonstrate the need for more sibling- and family-centered training to increase the use of AAC in the natural environment. Families were satisfied with the goals, procedures, and outcomes; however, they also expressed their need for additional support.

Parent-Implemented Telepractice Autism Intervention: A Case Study of Maintenance and Generalization.

The extent to which people maintain new skills and generalize those skills to new contexts without support are two aspects of intervention research that can be difficult to examine, especially over a sustained period of time and across a variety of contexts. In past research, we have explored teaching parents and caregivers to implement evidence-based communication strategies with their young children with autism who are minimally verbal. When a former research participant contacted us with a request to participate in our project again, four years later and with a different son, we used this as an opportunity to ask questions about her maintenance of the skills in using the targeted strategies, and her generalization of those skills to a different child. Using the data collected with her older son, Ali, and new data collected four years later with her younger son, Rami, we present a case study of this mother. We discuss the implications of the findings on interpreting the efficacy of the telepractice intervention's programming for generalization, identifying opportunities for refining the intervention, and insights useful for other intervention research.

Building Family Capacity: supporting multiple family members to implement aided Language modeling.

Family-centered capacity-building practices have been shown to benefit children and families. However, limited research explores these practices for children who use augmentative and alternative communication. This study explored an intervention to teach family members to implement an Aided Language Modeling (ALM) strategy across natural activities at home. A single case multiple probe design was used to evaluate the intervention with five family members and a girl with autism. Results showed the intervention increased family members' percentage of high-fidelity ALM strategy use and rate of ALM. Descriptively, a modest increase was also observed in the proportion of the child's communication using the speech-generating device. Social validity interviews suggested the goals, procedures, and outcomes were socially valid and supported family capacity building.

Parent-Implemented Interventions via Telepractice in Autism Research: A Review of Social Validity Assessments.

Purpose of Review: Parent-implemented autism interventions are considered empirically validated interventions and the use of telepractice in these interventions is reported as effective. However, little is known about the social validity assessments and outcomes of these interventions. The purpose of this review is to explore the current practices of conducting social validity assessment and reporting its outcomes within parent-implemented telepractice autism interventions. Recent Findings: The 11 reviewed studies included caregivers as participants, telepractice intervention focusing on social communication outcomes of young autistic children, and were published in a peer-reviewed journal within the past five years. Summary: The researchers in the reviewed articles reported positive outcomes for parent-implemented telepractice autism interventions. Notably, however, information about social validity assessments of the interventions was limited. Researchers are encouraged to evaluate the social validity of interventions using multiple data sources and methods, and report on their findings as they relate to other types of data.

Strategies for capacity building in a low-resource setting: Stakeholders' voices.

LAY ABSTRACT: Prevalence of autism is increasing all around the globe, but there is still great inequity in accessing evidence-based interventions. Although the field of autism research has made great strides in identifying and establishing evidence-based interventions, dissemination and implementation of these interventions have been reported as inequitable. This inequity is especially highlighted in many low-resource settings, such as Mongolia. As a field, there is still much to be learned about what strategies are used by stakeholders in low-resource settings to build capacity and to mitigate the hardships. To gain a deeper understanding of strategies for capacity building within a low-resource setting, we conducted five focus groups with 30 Mongolian caregivers of children with autism and 15 individual interviews with various professionals who work in Mongolia. These stakeholders reported three main strategies, including (a) partnership, (b) advocacy, and (c) empowerment, which included several strategies and implications on capacity-building practices. Furthermore, the findings from this study may suggest important implications for future intervention research.

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

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.

Graphing the Intersection of Rate and Fidelity in Single-Case Research.

Single-case research is a prevalent and useful method for evaluating the effects of interventions in special education research. A single-case graph "should make available all of the data that permit evaluation of the criteria for visual inspection, at the very least," while not misleading inspectors (Kazdin, 2011, p. 335). Although this is widely known, it poses challenges for multifaceted dependent variables, such as those that address both rate and a measure of quality, such as fidelity. Both factors may be important to accurately interpret intervention effects, such as those within cascading interventions implemented by natural change agents. However, representing both in a single graph is challenging. In response to this challenge, we present a single data set from a multiple-baseline design graphed in six distinct formats. Across these graphs, we discuss implications for visual analysis and interpretation and invite discussion of this important area of single-case research in search of recommendations for best practice.

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

Although it is well-documented that families of children with autism in developed nations report hardships, few researchers have focused on families who live in less-developed, low-resource settings. Using five focus groups with 30 parents of children with autism in Mongolia, a low- resource setting, the purpose of this study was to provide detailed accounts of their experiences, challenges, and needs. Participants reported severe challenges related to raising their children with autism in their country. Parents shared barriers related to the limited availability of services and support, exacerbated financial burdens, and a lack of enforcement of relevant laws. Parents also shared their perceived needs including more services for their children, more sustainable training and coaching programs for parents, and parents' collective advocacy.

FACES: An Advocacy Intervention for African American Parents of Children With Autism.

Children with autism and their families often face challenges accessing early intervention and related services. African American children face additional challenges due to disparities in diagnoses and access to services. These disparities present a great need for parent advocacy to combat culturally insensitive service delivery and strained parent-professional partnerships. In this sequential mixed methods study, we piloted a 6-week parent-training intervention (FACES) among African American parents of children with autism and evaluated participants' empowerment, advocacy, and partnerships pre- and postintervention. Results indicated that parents' advocacy, sense of empowerment, and community support were strengthened, following the FACES program. Participants also described the FACES intervention as socially valid. Implications for research and practice are discussed.

The Effects of Telepractice to Support Family Members in Modeling a Speech-Generating Device in the Home.

Purpose Family members are an integral support for children with complex communication needs (CCN). However, there is limited research exploring "whole family" intervention to support children with CCN, including evidence-based approaches such as aided language modeling and innovative delivery options such as telepractice. The purpose of this study was to explore whether the use of telepractice-based training and coaching is a valid means of delivering intervention to the whole family unit to implement aided language modeling. Method A 4-year-old child with CCN who uses a speech-generating device and her four family members participated in the study. A single-case multiple-probe design across the four dyads was used to determine the effect of the memory aid, namely, Prepare, Show, Wait, and Respond, via telepractice intervention to teach family members to provide aided language modeling with fidelity during natural routines. Results We found that telepractice-based training and coaching increased family members' high-fidelity models and rate of modeling. The target child also showed an increase in independent communication and rate of augmentative and alternative communication use. Social validity interviews indicated that the participants found the intervention to be socially valid. Conclusions Given the findings of this study, speech-language pathologists should encourage the involvement of the whole family in augmentative and alternative communication interventions. Future research should examine the impact of training and coaching all family members together in their natural environment, explore specific adaptations for participants, and investigate the effects of intervention delivered by speech-language pathologists who work directly with families and utilize family-centered practices.

Parent and Professional Experiences Supporting African-American Children with Autism.

While the identification of autism spectrum disorder (ASD) has stabilized at 1 in 59 children in the USA, and children can now be diagnosed reliably with ASD at 2 years old, African-American children are less likely to be diagnosed with ASD. Once African-American children with ASD are identified, there is a latency between diagnosis and access to services when compared to European American children. In an effort to investigate these disparities, this qualitative study explored the experiences and perceptions of African-American parents of children with ASD. This study also explored the experiences and perceptions of professionals who support African-American children with ASD and their families. Findings indicate that (a) participants identified few facilitators to service access, and (b) both parents and healthcare providers perceived similar barriers and facilitators to early diagnoses and service access. Implications for parents, healthcare providers, and educators are discussed.

Systematic Protocols for the Visual Analysis of Single-Case Research Data.

Researchers in applied behavior analysis and related fields such as special education and school psychology use single-case designs to evaluate causal relations between variables and to evaluate the effectiveness of interventions. Visual analysis is the primary method by which single-case research data are analyzed; however, research suggests that visual analysis may be unreliable. In the absence of specific guidelines to operationalize the process of visual analysis, it is likely to be influenced by idiosyncratic factors and individual variability. To address this gap, we developed systematic, responsive protocols for the visual analysis of A-B-A-B and multiple-baseline designs. The protocols guide the analyst through the process of visual analysis and synthesize responses into a numeric score. In this paper, we describe the content of the protocols, illustrate their application to 2 graphs, and describe a small-scale evaluation study. We also describe considerations and future directions for the development and evaluation of the protocols.