Adapting parent-focused interventions for diverse caregivers of children with intellectual and developmental disabilities: Lessons learned during global crises.

Parent-focused interventions have been designed to provide training and support to caregivers who are essential in achieving positive outcomes for children with intellectual and developmental disabilities (IDD). In 2020, significant crises, including the COVID-19 pandemic and continued racial tensions, profoundly impacted the livelihood of children with IDD and their families. Many ongoing efforts to address disparities among this population were halted temporarily and required further adaptations. Researchers adapted interventions and support to address the disparities impacting children with IDD and their families with limited guidance. We provide a descriptive case analysis of four parent-focused interventions that responded to the global crises to continue serving children with IDD and their families. The four distinct programs were based on applied behavior analysis and naturalistic, developmental-behavioral paradigms that were culturally adapted for families of young children with IDD from diverse cultural and socioeconomic backgrounds. We present the qualitative reports on the challenges and benefits that arose with adapting the four parent-focused interventions for telehealth implementation. We focused specifically on adaptations made in recruitment and retention, instrumentation and measurement, research staff training, and intervention delivery. We synthesize our experience with challenges and solutions in adapting parent-focused interventions for racially/ethnically and socioeconomically diverse children with IDD and their families. We conclude with recommendations for researchers and practitioners on methods for adapting parent-focused interventions to address the significant health disparities that impact racially, ethnically, and socioeconomically diverse children with IDD and their families.

Examining factors related to the age of diagnosis of children with autism spectrum disorder from immigrant and non-immigrant backgrounds in a diverse clinical sample.

A timely diagnosis of autism spectrum disorder (ASD) is important for children as that may help inform the best services and supports needed for optimal outcomes. However, disparities in the identification of ASD have been consistently documented for racial/ethnic minority and immigrant populations. The majority of studies of immigrant populations have focused on the qualitative experience of ASD, however, greater knowledge about the predictors of the age of initial ASD diagnosis is needed. This study examined the child, maternal, and family-level factors that predicted the age of initial ASD diagnosis in a diverse clinical sample through a retrospective medical record review. Medical records of clinical evaluations conducted between 2004 and 2014 were reviewed for children with ASD born to immigrant and non-immigrant mothers. Regression analyses found that for both groups of children with ASD, using verbal language to communicate and having another diagnosis (attention-deficit/hyperactivity disorder or another condition) predicted an older age of initial ASD diagnosis. For children with ASD born to immigrant mothers, residing in a multilingual household was associated with a younger age of diagnosis. These results highlight the complexities of an ASD diagnosis among diverse children and families, particularly among immigrant communities. LAY SUMMARY: This research looked at predictors of when children received their first autism spectrum disorder diagnosis across children born to immigrant mothers and children born to U.S.-born mothers. Living in a multilingual home was related to a younger age of diagnosis for children of immigrant mothers; being verbal and having another diagnosis was related to an older age of diagnosis for both groups of children. This highlights the need to improve diagnostic services for diverse children.

The Cultural Adaptation of a Transition Program for Latino Families of Youth with Autism Spectrum Disorder.

During the transition to adulthood, effective and culturally relevant supports are critical for families of youth with autism spectrum disorder (ASD). There is a dearth of documented program development and research on supports for Spanish-speaking Latino families during this life stage. The present work describes the cultural adaptation process of an evidence-based transition program for Latino families of youth with ASD. A model of the actions necessary to meaningfully conduct a cultural adaptation in this context is described. After implementing the culturally adapted program titled Juntos en la Transición with five Spanish-speaking families, parents reported high social validity of the program through surveys and interviews. The cultural adaptation process followed in this work is important for the further development of programs that address the transition needs of Latino youth with ASD and their families. Our impressions may also be useful to those who aim to develop culturally sensitive and ecologically valid multifamily group intervention programs for families from cultural and linguistic minority groups.

Durante la transición a la adultez, las adaptaciones eficaces y culturalmente relevantes son fundamentales para las familias de jóvenes con trastorno del espectro autista (TEA). Hay una escasez de investigaciones y desarrollo de programas documentados sobre las adaptaciones para las familias latinas de habla hispana durante esta etapa de la vida. El presente trabajo describe el proceso de adaptación cultural de un programa de transición de base fáctica para familias latinas de jóvenes con TEA. Se describe un modelo de las medidas necesarias para llevar a cabo significativamente una adaptación cultural en este contexto. Después de implementar el programa adaptado culturalmente y titulado Juntos en la Transición con cinco familias de habla hispana, los padres informaron una alta validez social del programa mediante encuestas y entrevistas. El proceso de adaptación cultural seguido en este trabajo es importante para el futuro desarrollo de programas que aborden las necesidades de transición de los jóvenes latinos con TEA y sus familias. Nuestras impresiones también pueden ser útiles para aquellos que desean desarrollar programas de intervención en grupos multifamiliares ecológicamente válidos y culturalmente adaptados para familias de grupos culturales y lingüísticos minoritarios.

Examination of monolingual (English) and bilingual (English/Spanish; English/Urdu) children's syntactic awareness.

In this study, monolingual (English) and bilingual (English/Spanish, English/Urdu) five- and six-year-old children completed a grammaticality judgment test in order to assess their awareness of the grammaticality of two types of syntactic constructions in English: word order and gender representation. All children were better at detecting grammatically correct and incorrect word order constructions than gender constructions, regardless of language group. In fact, bilingualism per se did not impact the results as much as receptive vocabulary range. For example, children with the highest receptive vocabulary scores were more accurate in detecting incorrect word order constructions (i.e., word order violations, semantic anomalies) and incorrect gender agreement than children in the lower receptive vocabulary ranges. However, no differences were found between the ranges for ambiguous gender constructions. These results highlight the importance of receptive vocabulary ability on syntactic awareness performance, regardless of language group.

Proneness to Self-Conscious Emotions in Adults With and Without Autism Traits.

Self-conscious emotions, such as shame, guilt and pride, facilitate our social interactions by motivating us to adhere to social norms and external standards. In this study, we examined proneness to shame, guilt, hubristic pride and authentic pride in adults with Autism Spectrum Disorder traits (ASD-T) and in neurotypical (NT) adults. Relations between proneness to self-conscious emotions and theory of mind (ToM), fear of negative evaluation, and social functioning were also assessed. Adults with ASD-T showed greater proneness to shame, and less proneness to guilt and pride than NT adults. Both ToM and fear of negative evaluation predicted proneness to self-conscious emotions in ASD-T. These findings are discussed in terms of understanding complex emotion processing in adults with ASD-T.

Diagnostic Utility of the ADI-R and DSM-5 in the Assessment of Latino Children and Adolescents.

Latino children in the US are systematically underdiagnosed with Autism Spectrum Disorder (ASD); therefore, it is important that recent changes to the diagnostic process do not exacerbate this pattern of under-identification. Previous research has found that the Autism Diagnostic Interview-Revised (ADI-R) algorithm, based on the Diagnostic and Statistical Manual of Mental Disorder, Fourth Edition, Text Revision (DSM-IV-TR), has limitations with Latino children of Spanish speaking parents. We evaluated whether an ADI-R algorithm based on the new DSM-5 classification for ASD would be more sensitive in identifying Latino children of Spanish speaking parents who have a clinical diagnosis of ASD. Findings suggest that the DSM-5 algorithm shows better sensitivity than the DSM-IV-TR algorithm for Latino children.

Clinical Validity of the ADI-R in a US-Based Latino Population.

The Autism Diagnostic Interview-Revised (ADI-R) has been validated as a tool to aid in the diagnosis of Autism; however, given the growing diversity in the United States, the ADI-R must be validated for different languages and cultures. This study evaluates the validity of the ADI-R in a US-based Latino, Spanish-speaking population of 50 children and adolescents with ASD and developmental disability. Sensitivity and specificity of the ADI-R as a diagnostic tool were moderate, but lower than previously reported values. Validity of the social reciprocity and restrictive and repetitive behaviors domains was high, but low in the communication domain. Findings suggest that language discordance between caregiver and child may influence reporting of communication symptoms and contribute to lower sensitivity and specificity.

The role of emotion on the recall of central and peripheral information from script-based text.

In three experiments, script-based stories were used to provide thematic emotion. Consistent with past research expressing emotion thematically, emotion aided recall of both central and peripheral information. However, emotion had to be directly associated with the central or peripheral information, and emotion only facilitated memory for peripheral information when peripheral information alone was associated with the emotion. Emotion did not aid overall recall of stories. Positive and negative emotions were generally better recalled when they were incongruent with the information they were associated with, such as a positive emotion associated with an interruptive action. These results provide evidence that thematically expressed, low arousal emotion can have facilitative effects on memory. Implications for the role of emotion on memory are discussed.