Age of autism diagnosis in Latin American and Caribbean countries / Maria C. MONTENEGRO ; Ana C. RAMIREZ ; Daniel VALDEZ ; Analia ROSOLI ; Ricardo GARCIA ; Gabriela GARRIDO ; Sebastián CUKIER ; Alexia RATTAZZI ; Cristiane S. PAULA in Autism, 28-1 (January 2024)  

Public ISBD [article]  inAutism > 28-1 (January 2024) . - p.58?72 Titre : Age of autism diagnosis in Latin American and Caribbean countries Type de document : texte imprimé Auteurs : Maria C. MONTENEGRO, Auteur ; Ana C. RAMIREZ, Auteur ; Daniel VALDEZ, Auteur ; Analia ROSOLI, Auteur ; Ricardo GARCIA, Auteur ; Gabriela GARRIDO, Auteur ; Sebastián CUKIER, Auteur ; Alexia RATTAZZI, Auteur ; Cristiane S. PAULA, Auteur Article en page(s) : p.58?72 Mots-clés : age of diagnosis  autism spectrum disorders  caregivers  first observed concerns  Latin America  risk factors Index. décimale : PER Périodiques Résumé : An earlier diagnosis of autism spectrum disorder might lead to an earlier intervention, yet knowledge and awareness of autism spectrum disorder in Latin America and Caribbean Countries are limited. A later autism spectrum disorder diagnosis has been associated with negative consequences, as it might imply later access to services. This study aims to identify factors associated with the age of autism spectrum disorder diagnosis as reported by 2520 caregivers of autistic children from six Latin America and Caribbean Countries. Results indicate that on average, caregivers were concerned about their child?s development by 22 months of age; however, the diagnosis was 24 months later. Current age of autistic individuals, better language abilities, and having public health coverage increased the age of diagnosis. On the contrary, the presence of medical comorbidities, severity level, and type of diagnosis decreased the age of diagnosis. The age of diagnosis of autistic individuals in Latin America and Caribbean Countries corresponded to the start of formal schooling despite a much earlier age of first noticed developmental concern, highlighting the need to reduce this age gap and increase children s probability of benefiting from early intervention. Taken together, autism spectrum disorder personal/clinical characteristics and access to health service are the main determinants for the age of diagnosis. Lay abstract An earlier diagnosis of autism spectrum disorder might lead to earlier intervention. However, people living in Latin American and Caribbean countries do not have much knowledge about autism spectrum disorder symptoms. It has been suggested that the older a child is when diagnosed, the fewer opportunities he or she will have to receive services. We asked 2520 caregivers of autistic children in six different Latin America and Caribbean Countries, the child?s age when they noticed some developmental delays and their child?s age when they received their first autism spectrum disorder diagnosis. Results indicate that, on average, caregivers were concerned about their child?s development by 22 months of age; however, the diagnosis was received when the child was 46 months of age. In addition, older children with better language abilities and public health coverage (opposed to private health coverage) were diagnosed later. On the contrary, children with other medical problems and more severe behaviors received an earlier diagnosis. In our study, children were diagnosed around the time they entered formal schooling, delaying the access to early intervention programs. In summary, the characteristics of the autistic person and the type of health coverage influence the age of diagnosis in children living in Latin America and Caribbean Countries. En ligne : https://dx.doi.org/10.1177/13623613221147345 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519 [article] Age of autism diagnosis in Latin American and Caribbean countries [texte imprimé] / Maria C. MONTENEGRO, Auteur ; Ana C. RAMIREZ, Auteur ; Daniel VALDEZ, Auteur ; Analia ROSOLI, Auteur ; Ricardo GARCIA, Auteur ; Gabriela GARRIDO, Auteur ; Sebastián CUKIER, Auteur ; Alexia RATTAZZI, Auteur ; Cristiane S. PAULA, Auteur . - p.58?72. in Autism > 28-1 (January 2024) . - p.58?72 Mots-clés : age of diagnosis  autism spectrum disorders  caregivers  first observed concerns  Latin America  risk factors Index. décimale : PER Périodiques Résumé : An earlier diagnosis of autism spectrum disorder might lead to an earlier intervention, yet knowledge and awareness of autism spectrum disorder in Latin America and Caribbean Countries are limited. A later autism spectrum disorder diagnosis has been associated with negative consequences, as it might imply later access to services. This study aims to identify factors associated with the age of autism spectrum disorder diagnosis as reported by 2520 caregivers of autistic children from six Latin America and Caribbean Countries. Results indicate that on average, caregivers were concerned about their child?s development by 22 months of age; however, the diagnosis was 24 months later. Current age of autistic individuals, better language abilities, and having public health coverage increased the age of diagnosis. On the contrary, the presence of medical comorbidities, severity level, and type of diagnosis decreased the age of diagnosis. The age of diagnosis of autistic individuals in Latin America and Caribbean Countries corresponded to the start of formal schooling despite a much earlier age of first noticed developmental concern, highlighting the need to reduce this age gap and increase children s probability of benefiting from early intervention. Taken together, autism spectrum disorder personal/clinical characteristics and access to health service are the main determinants for the age of diagnosis. Lay abstract An earlier diagnosis of autism spectrum disorder might lead to earlier intervention. However, people living in Latin American and Caribbean countries do not have much knowledge about autism spectrum disorder symptoms. It has been suggested that the older a child is when diagnosed, the fewer opportunities he or she will have to receive services. We asked 2520 caregivers of autistic children in six different Latin America and Caribbean Countries, the child?s age when they noticed some developmental delays and their child?s age when they received their first autism spectrum disorder diagnosis. Results indicate that, on average, caregivers were concerned about their child?s development by 22 months of age; however, the diagnosis was received when the child was 46 months of age. In addition, older children with better language abilities and public health coverage (opposed to private health coverage) were diagnosed later. On the contrary, children with other medical problems and more severe behaviors received an earlier diagnosis. In our study, children were diagnosed around the time they entered formal schooling, delaying the access to early intervention programs. In summary, the characteristics of the autistic person and the type of health coverage influence the age of diagnosis in children living in Latin America and Caribbean Countries. En ligne : https://dx.doi.org/10.1177/13623613221147345 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519

Cultural and Linguistic Adaptation of an Autism Parent Mediated Intervention for Spanish Speaking Latinos / Ana C. RAMIREZ in Journal of Autism and Developmental Disorders, 56-12 (December 2026)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 56-12 (December 2026) . - p.4892-4905 Titre : Cultural and Linguistic Adaptation of an Autism Parent Mediated Intervention for Spanish Speaking Latinos Type de document : texte imprimé Auteurs : Ana C. RAMIREZ, Auteur ; Maria C. MONTENEGRO, Auteur ; Bianca T. VILLALOBOS, Auteur ; Nazaret Fresno CAÑADA, Auteur ; Gabriel Gonzalez NUÑEZ, Auteur ; Rocio CALDERON, Auteur ; Susana Perez KANTOR, Auteur ; Miriam MARES, Auteur ; Miriam ORTIZ, Auteur ; Geohanna NOEL, Auteur ; Cecilia MONTIEL-NAVA, Auteur Article en page(s) : p.4892-4905 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : The Caregiver Skills Training (CST) was developed by the World Health Organization (WHO) to improve access to evidence-based services for children with developmental concerns from low-income backgrounds. While the CST program has undergone four significant revisions to increase feasibility of implementation and has been adapted and implemented in more than 30 countries, currently the Spanish version is outdated and has never been implemented in the U.S. This study aimed to culturally and linguistically adapt the Spanish-version of the CST for a predominantly Spanish-speaking Latino-populated region in the United States. The present study followed a community based participatory research (CBPR) approach and used a phenomenological framework to evaluate the content and cultural appropriateness of the Spanish translation of the CST. Focus groups were conducted with Spanish-speaking and bilingual parents of children with an autism spectrum disorder (ASD) diagnosis to inform potential modifications needed to establish a culturally responsive and linguistically appropriate curriculum. Findings yielded linguistic and environmental adaptations to the program, particularly related to autism labels and common values of Latino culture, such as personalismo. Results also indicated that the overall content of the program was acceptable for the Spanish speaking Latino community. This study highlights the critical role of community engagement. By actively involving stakeholders in the adaptation process, the CST is tailored to reflect the unique cultural values, language preferences, and lived experiences of the community. In doing so, it ensures that the program truly meets their needs, improving efficacy, and reducing attrition. En ligne : https://doi.org/10.1007/s10803-025-06921-w Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=595 [article] Cultural and Linguistic Adaptation of an Autism Parent Mediated Intervention for Spanish Speaking Latinos [texte imprimé] / Ana C. RAMIREZ, Auteur ; Maria C. MONTENEGRO, Auteur ; Bianca T. VILLALOBOS, Auteur ; Nazaret Fresno CAÑADA, Auteur ; Gabriel Gonzalez NUÑEZ, Auteur ; Rocio CALDERON, Auteur ; Susana Perez KANTOR, Auteur ; Miriam MARES, Auteur ; Miriam ORTIZ, Auteur ; Geohanna NOEL, Auteur ; Cecilia MONTIEL-NAVA, Auteur . - p.4892-4905. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 56-12 (December 2026) . - p.4892-4905 Index. décimale : PER Périodiques Résumé : The Caregiver Skills Training (CST) was developed by the World Health Organization (WHO) to improve access to evidence-based services for children with developmental concerns from low-income backgrounds. While the CST program has undergone four significant revisions to increase feasibility of implementation and has been adapted and implemented in more than 30 countries, currently the Spanish version is outdated and has never been implemented in the U.S. This study aimed to culturally and linguistically adapt the Spanish-version of the CST for a predominantly Spanish-speaking Latino-populated region in the United States. The present study followed a community based participatory research (CBPR) approach and used a phenomenological framework to evaluate the content and cultural appropriateness of the Spanish translation of the CST. Focus groups were conducted with Spanish-speaking and bilingual parents of children with an autism spectrum disorder (ASD) diagnosis to inform potential modifications needed to establish a culturally responsive and linguistically appropriate curriculum. Findings yielded linguistic and environmental adaptations to the program, particularly related to autism labels and common values of Latino culture, such as personalismo. Results also indicated that the overall content of the program was acceptable for the Spanish speaking Latino community. This study highlights the critical role of community engagement. By actively involving stakeholders in the adaptation process, the CST is tailored to reflect the unique cultural values, language preferences, and lived experiences of the community. In doing so, it ensures that the program truly meets their needs, improving efficacy, and reducing attrition. En ligne : https://doi.org/10.1007/s10803-025-06921-w Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=595

Scoping review: Facilitators, barriers, and cultural adaptations in the caregiver skills training program for children with developmental concerns / Cecilia MONTIEL-NAVA in Autism, 30-3 (March 2026)  

Public ISBD [article]  inAutism > 30-3 (March 2026) . - p.668-681 Titre : Scoping review: Facilitators, barriers, and cultural adaptations in the caregiver skills training program for children with developmental concerns Type de document : texte imprimé Auteurs : Cecilia MONTIEL-NAVA, Auteur ; Maria C. MONTENEGRO, Auteur ; Ana C. RAMIREZ, Auteur ; Victoria VILLARREAL, Auteur ; Lucia MURILLO CHACKO, Auteur ; Pamela DIXON, Auteur ; Sarah DABABNAH, Auteur Article en page(s) : p.668-681 Langues : Anglais (eng) Mots-clés : autism  cultural adaptation  developmental disabilities  parent-mediated interventions  task-shifting Index. décimale : PER Périodiques Résumé : Autism interventions are predominantly developed in high-income countries, limiting access for families in low- and middle-income countries due to systemic, cultural, and logistical barriers. The Caregiver Skills Training program aims to address this disparity by equipping caregivers with practical skills. This scoping review examines the cultural adaptations, facilitators, and barriers to the implementation of Caregiver Skills Training, focusing on its accessibility, feasibility, and acceptability. A comprehensive search of ERIC, PsycINFO, PubMed, and Web of Science identified eligible studies that reported cultural or linguistic adaptations of Caregiver Skills Training. Forward searches and manual reference checks supplemented the review. Data were extracted using the Cultural Adaptation Checklist framework and analyzed for patterns in adaptation, training, barriers, and facilitators. Seventeen studies across Asia, Africa, Europe, and North America highlighted diverse adaptations in language, content, and delivery methods. Facilitators included community partnerships and task-shifting with non-specialists, while barriers involved logistical challenges, stigma, and resource constraints. Caregiver Skills Training’s flexible, culturally responsive framework makes it a viable model for scaling autism interventions globally. Tailored adaptations and strong support systems for facilitators are essential to overcoming systemic challenges and ensuring equitable access in low- and middle-income countries.Lay abstract How the Caregiver Skills Training Program Helps Families WorldwideThe Caregiver Skills Training program was designed to help families of children with autism and other developmental challenges in low-resource settings. Caregiver Skills Training empowers parents and caregivers by teaching them practical strategies to improve their child’s communication, social interaction, and daily living skills. This program is unique because it does not require a formal diagnosis and is designed to be delivered by trained non-specialists, such as community health workers. A review of 17 studies from different countries examined how the Caregiver Skills Training program was adapted to fit the cultural and practical needs of families in each region. For example, materials were translated, simplified, and paired with visual aids to help parents with lower literacy levels. Non-specialist facilitators helped make the program more accessible, and online or hybrid delivery methods increased participation during the COVID-19 pandemic. However, challenges remain. Families often face barriers like limited transportation, stigma, and lack of Internet access, which can prevent them from fully participating in the program. Facilitators also need more training and support to maintain program quality. Despite these obstacles, Caregiver Skills Training shows promise as a global solution to bridge the gap in autism care, especially in underserved communities. This review highlights the importance of adapting programs like Caregiver Skills Training to meet the unique needs of families worldwide, ensuring that every child has the opportunity to thrive, regardless of where they live. En ligne : https://dx.doi.org/10.1177/13623613251406399 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=582 [article] Scoping review: Facilitators, barriers, and cultural adaptations in the caregiver skills training program for children with developmental concerns [texte imprimé] / Cecilia MONTIEL-NAVA, Auteur ; Maria C. MONTENEGRO, Auteur ; Ana C. RAMIREZ, Auteur ; Victoria VILLARREAL, Auteur ; Lucia MURILLO CHACKO, Auteur ; Pamela DIXON, Auteur ; Sarah DABABNAH, Auteur . - p.668-681. Langues : Anglais (eng) in Autism > 30-3 (March 2026) . - p.668-681 Mots-clés : autism  cultural adaptation  developmental disabilities  parent-mediated interventions  task-shifting Index. décimale : PER Périodiques Résumé : Autism interventions are predominantly developed in high-income countries, limiting access for families in low- and middle-income countries due to systemic, cultural, and logistical barriers. The Caregiver Skills Training program aims to address this disparity by equipping caregivers with practical skills. This scoping review examines the cultural adaptations, facilitators, and barriers to the implementation of Caregiver Skills Training, focusing on its accessibility, feasibility, and acceptability. A comprehensive search of ERIC, PsycINFO, PubMed, and Web of Science identified eligible studies that reported cultural or linguistic adaptations of Caregiver Skills Training. Forward searches and manual reference checks supplemented the review. Data were extracted using the Cultural Adaptation Checklist framework and analyzed for patterns in adaptation, training, barriers, and facilitators. Seventeen studies across Asia, Africa, Europe, and North America highlighted diverse adaptations in language, content, and delivery methods. Facilitators included community partnerships and task-shifting with non-specialists, while barriers involved logistical challenges, stigma, and resource constraints. Caregiver Skills Training’s flexible, culturally responsive framework makes it a viable model for scaling autism interventions globally. Tailored adaptations and strong support systems for facilitators are essential to overcoming systemic challenges and ensuring equitable access in low- and middle-income countries.Lay abstract How the Caregiver Skills Training Program Helps Families WorldwideThe Caregiver Skills Training program was designed to help families of children with autism and other developmental challenges in low-resource settings. Caregiver Skills Training empowers parents and caregivers by teaching them practical strategies to improve their child’s communication, social interaction, and daily living skills. This program is unique because it does not require a formal diagnosis and is designed to be delivered by trained non-specialists, such as community health workers. A review of 17 studies from different countries examined how the Caregiver Skills Training program was adapted to fit the cultural and practical needs of families in each region. For example, materials were translated, simplified, and paired with visual aids to help parents with lower literacy levels. Non-specialist facilitators helped make the program more accessible, and online or hybrid delivery methods increased participation during the COVID-19 pandemic. However, challenges remain. Families often face barriers like limited transportation, stigma, and lack of Internet access, which can prevent them from fully participating in the program. Facilitators also need more training and support to maintain program quality. Despite these obstacles, Caregiver Skills Training shows promise as a global solution to bridge the gap in autism care, especially in underserved communities. This review highlights the importance of adapting programs like Caregiver Skills Training to meet the unique needs of families worldwide, ensuring that every child has the opportunity to thrive, regardless of where they live. En ligne : https://dx.doi.org/10.1177/13623613251406399 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=582

Stepped-Care Cognitive Behavioral Therapy in Children on the Autism Spectrum with Co-occurring Anxiety / Sophie C. SCHNEIDER ; Sean M. OLSEN ; Ana C. RAMIREZ ; Leandra N. BERRY ; Robin P. GOIN-KOCHEL ; Morgan M. MCNEEL ; Abigail E. CANDELARI ; Andrew G. GUZICK ; Sandra L. CEPEDA ; Saira WEINZIMMER ; Robert G. VOIGT ; Troy QUAST ; Wayne K. GOODMAN ; Alison SALLOUM in Journal of Autism and Developmental Disorders, 54-1 (January 2024)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 54-1 (January 2024) . - p.93-108 Titre : Stepped-Care Cognitive Behavioral Therapy in Children on the Autism Spectrum with Co-occurring Anxiety Type de document : texte imprimé Auteurs : Sophie C. SCHNEIDER, Auteur ; Sean M. OLSEN, Auteur ; Ana C. RAMIREZ, Auteur ; Leandra N. BERRY, Auteur ; Robin P. GOIN-KOCHEL, Auteur ; Morgan M. MCNEEL, Auteur ; Abigail E. CANDELARI, Auteur ; Andrew G. GUZICK, Auteur ; Sandra L. CEPEDA, Auteur ; Saira WEINZIMMER, Auteur ; Robert G. VOIGT, Auteur ; Troy QUAST, Auteur ; Wayne K. GOODMAN, Auteur ; Alison SALLOUM, Auteur Article en page(s) : p.93-108 Index. décimale : PER Périodiques Résumé : This trial examined stepped-care cognitive-behavioral treatment (CBT) among 96 autistic youth with co-occurring anxiety. Step 1 included an open trial of parent-led, therapist-guided bibliotherapy. Step 2 was family-based CBT for those who did not respond to Step 1 or maintenance for those who did. Eighteen participants (28%) who completed Step 1 responded. Responders reported significantly lower pre-treatment anxiety, internalizing symptoms, and functional impairment than non-responders. After Steps 1 and 2, 80% of completers (55% intent-to-treat) were responders. Anxiety, impairment, and ASD-related impairments significantly improved. Youth in maintenance experienced faster improvement through post-treatment, though there were no group differences at 3-month-follow-up. A stepped approach may help some individuals in Step 1, particularly those who are less anxious. En ligne : https://doi.org/10.1007/s10803-022-05775-w Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=520 [article] Stepped-Care Cognitive Behavioral Therapy in Children on the Autism Spectrum with Co-occurring Anxiety [texte imprimé] / Sophie C. SCHNEIDER, Auteur ; Sean M. OLSEN, Auteur ; Ana C. RAMIREZ, Auteur ; Leandra N. BERRY, Auteur ; Robin P. GOIN-KOCHEL, Auteur ; Morgan M. MCNEEL, Auteur ; Abigail E. CANDELARI, Auteur ; Andrew G. GUZICK, Auteur ; Sandra L. CEPEDA, Auteur ; Saira WEINZIMMER, Auteur ; Robert G. VOIGT, Auteur ; Troy QUAST, Auteur ; Wayne K. GOODMAN, Auteur ; Alison SALLOUM, Auteur . - p.93-108. in Journal of Autism and Developmental Disorders > 54-1 (January 2024) . - p.93-108 Index. décimale : PER Périodiques Résumé : This trial examined stepped-care cognitive-behavioral treatment (CBT) among 96 autistic youth with co-occurring anxiety. Step 1 included an open trial of parent-led, therapist-guided bibliotherapy. Step 2 was family-based CBT for those who did not respond to Step 1 or maintenance for those who did. Eighteen participants (28%) who completed Step 1 responded. Responders reported significantly lower pre-treatment anxiety, internalizing symptoms, and functional impairment than non-responders. After Steps 1 and 2, 80% of completers (55% intent-to-treat) were responders. Anxiety, impairment, and ASD-related impairments significantly improved. Youth in maintenance experienced faster improvement through post-treatment, though there were no group differences at 3-month-follow-up. A stepped approach may help some individuals in Step 1, particularly those who are less anxious. En ligne : https://doi.org/10.1007/s10803-022-05775-w Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=520

Time to Listen: Engaging Latino Autistic Adults and Parents as Partners in Advancing Autism Research / Cecilia MONTIEL-NAVA in Journal of Autism and Developmental Disorders, 56-11 (November 2026)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 56-11 (November 2026) . - p.4204-4216 Titre : Time to Listen: Engaging Latino Autistic Adults and Parents as Partners in Advancing Autism Research Type de document : texte imprimé Auteurs : Cecilia MONTIEL-NAVA, Auteur ; Chenoa NAVARRO, Auteur ; Jessica ABOUCHARD, Auteur ; Ana C. RAMIREZ, Auteur ; Victoria VILLAREAL, Auteur ; Rocio CALDERON, Auteur ; Susana Perez KANTOR, Auteur ; Valerie NEELEY, Auteur ; Alberto ALLEGRE, Auteur ; Antonio F. PAGÁN, Auteur ; Maria C. MONTENEGRO, Auteur Article en page(s) : p.4204-4216 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : The limited representation of Latino autistic individuals and their families in research studies limits our understanding of how autism presents and is experienced across diverse communities, emphasizing a need for more inclusive research methodologies and participant recruitment strategies. Our project aimed to explore how participatory research methods can be effectively implemented to develop culturally valid measurement tools and research protocols that accurately capture the experiences of bilingual/bicultural Latino autistic individuals and their families. This study used a phenomenological framework design guided by community-based Participatory research and the social model of disability principles. Two trained researchers conducted three focus groups with Latino parents of autistic children (n = 25) and two with Latino autistic adults (n = 8), and data was analyzed utilizing thematic analysis. We used a consultative model in which a community advisory board provided input throughout the project. Effective research engagement in border Latino communities is contingent on three key factors: fostering cultural and linguistic alignment, building and maintaining institutional trust, and thoughtfully incorporating community symbols. Together, these elements highlight a roadmap for researchers to build sustainable partnerships rooted in respect, equity, and cultural competence. Culturally informed research procedures, led by a culturally sensitive team of Latino researchers and Latino autism community members working as equal partners, can enhance engagement and ensure relevant, valid research studies and priorities. Using a CBPR framework and an intersectionality lens advances equitable representation in autism research and promotes culturally informed responses to the needs of diverse autistic communities. En ligne : https://doi.org/10.1007/s10803-025-06868-y Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=595 [article] Time to Listen: Engaging Latino Autistic Adults and Parents as Partners in Advancing Autism Research [texte imprimé] / Cecilia MONTIEL-NAVA, Auteur ; Chenoa NAVARRO, Auteur ; Jessica ABOUCHARD, Auteur ; Ana C. RAMIREZ, Auteur ; Victoria VILLAREAL, Auteur ; Rocio CALDERON, Auteur ; Susana Perez KANTOR, Auteur ; Valerie NEELEY, Auteur ; Alberto ALLEGRE, Auteur ; Antonio F. PAGÁN, Auteur ; Maria C. MONTENEGRO, Auteur . - p.4204-4216. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 56-11 (November 2026) . - p.4204-4216 Index. décimale : PER Périodiques Résumé : The limited representation of Latino autistic individuals and their families in research studies limits our understanding of how autism presents and is experienced across diverse communities, emphasizing a need for more inclusive research methodologies and participant recruitment strategies. Our project aimed to explore how participatory research methods can be effectively implemented to develop culturally valid measurement tools and research protocols that accurately capture the experiences of bilingual/bicultural Latino autistic individuals and their families. This study used a phenomenological framework design guided by community-based Participatory research and the social model of disability principles. Two trained researchers conducted three focus groups with Latino parents of autistic children (n = 25) and two with Latino autistic adults (n = 8), and data was analyzed utilizing thematic analysis. We used a consultative model in which a community advisory board provided input throughout the project. Effective research engagement in border Latino communities is contingent on three key factors: fostering cultural and linguistic alignment, building and maintaining institutional trust, and thoughtfully incorporating community symbols. Together, these elements highlight a roadmap for researchers to build sustainable partnerships rooted in respect, equity, and cultural competence. Culturally informed research procedures, led by a culturally sensitive team of Latino researchers and Latino autism community members working as equal partners, can enhance engagement and ensure relevant, valid research studies and priorities. Using a CBPR framework and an intersectionality lens advances equitable representation in autism research and promotes culturally informed responses to the needs of diverse autistic communities. En ligne : https://doi.org/10.1007/s10803-025-06868-y Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=595

---

1 (1 - 5 / 5) Par page : 25 50 100 200