Lack of access to services and support is an important issue for people with autism, but in low- and middle-income countries there is a lack of data on this problem. The aims of this study were to describe the challenges and priorities, identify barriers to care, and map stigma among families of individuals with autism in Latin America. This survey was undertaken by the Red Espectro Autista Latinoamerica network, a coalition of researchers/clinicians from six Latin American countries; it comprised 2942 caregivers of children with autism from Brazil, Argentina, Chile, Uruguay, Venezuela, and the Dominican-Republic, who completed the Spanish/Portuguese version of the Caregiver Needs Survey. The survey showed that the main priorities were greater community awareness and improvements in education. The main barriers to care were waiting lists (50.2%), treatment costs (35.2%), and lack of specialized services (26.1%). Stigma experienced by families was frequent: one-third reported feeling discriminated against and helpless for having a child with autism, 48.8% reported some type of financial problem, 47.4% had to reduce work hours, and 35.5% had to stop working because of their child’s autism. This survey describes the main needs/challenges faced by individuals with autism in Latin America, helping to build data-driven strategies at a national/regional level. Lay abstract Approximately 6 million individuals with autism spectrum disorder live in Latin America. In order to strengthen autism spectrum disorder research collaborations and awareness in the region, the Latin American Autism Spectrum Network ( Red Espectro Autista Latinoamerica) was constituted in 2015, comprising researchers and clinicians from the following six countries: Brazil Argentina, Chile, Uruguay, Venezuela, and the Dominican Republic. This first multisite study from the Red Espectro Autista Latinoamerica network aims to describe the challenges and priorities to identify barriers to care and to map stigma among families of individuals with autism spectrum disorder living in Latin America. A total of 2942 caregivers from these six countries completed an online survey showing that the main priorities were greater community awareness and improvements in the educational system for individuals with autism spectrum disorder. In addition to that, the main barriers to care were related to lack of structure, mainly waiting lists (50.2%), high treatment costs (35.2%), and lack of specialized services (26.1%). Stigma experienced by families was frequent: one third reported feeling discriminated against and helpless for having a child with autism spectrum disorder. Also, 48.8% of the caregivers declared financial problems, 47.4% of them had to cut down work hours, and 35.5% had to leave their jobs because of their child’s autism spectrum disorder. This is a pioneer study providing a description of the needs and challenges faced by families affected by autism spectrum disorder in Latin America, helping to build data-driven strategies at the national and regional levels.

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Comparisons of Child Behavior Checklist (CBCL) scores from 31 societies (Rescorla et al. Journal of Emotional and Behavioral Disorders 15:13-142 2007) supported the instrument's multicultural robustness, but none of these societies was in South America. The present study tested the multicultural robustness of the 2001 CBCL using data from a national epidemiological survey in Uruguay. Participants were 1,374 6- to 11-year-olds recruited through 65 schools nationwide; 1,098 (80%) had received no mental health or special education services in the past year (non-referred group), whereas 276 (referred group) had been referred for mental health services, had repeated ≥ 2 grades, or had significant developmental disabilities. Mean item ratings, factor structure, and scale internal consistencies were very similar to findings reported by Rescorla et al. (Journal of Emotional and Behavioral Disorders 15:13-142 2007) and Ivanova et al. (Journal of Clinical Child and Adoloescent Psychology 36: 405-417 2007). Children from low SES school environments obtained higher problem scores, especially in the referred group. Gender, age, and referral status effects paralleled those in the U.S. Non-referred children obtained somewhat higher mean problem scores in Uruguay than in the U.S., but mean score differences between non-referred and referred children were smaller in Uruguay than the U.S. Findings supporting the CBCL's multicultural robustness in a South American country extend the generalizability of findings reported by Rescorla et al. (Journal of Emotional and Behavioral Disorders 15:13-142 2007) for 31 societies.

Introduction . In Uruguay, the special care required for children with neurodevelopmental disorders presents difficulties including lack of access to specialists and rehabilitation services. Project ECHO (Extension for Community Healthcare Outcomes) connects primary care clinicians from remote areas to specialists to enable them to treat complex conditions through ongoing education and mentoring. Objective . To share the experience of the ECHO Autism program during the first 2 years of implementation. Methods . Analysis of ECHO Autism clinics from June 2015 to June 2017 including clinical cases presented participants’ self-perception of changes in skills and competences. Results . Twenty clinical cases were presented: mean age 4.5 years; 15 were males; and 17 with medical and psychiatric comorbidities. After ECHO Autism implementation, a statistically significant improvement in participants’ self-perception of skills and competences was observed. Conclusions . ECHO Autism in Uruguay is a meaningful approach to autism care and offers improved access to best practice care.

Presentamos un estudio multicéntrico realizado a través de una encuesta en línea a 1826 familias de personas con TEA de Argentina, Brasil, Chile, México, Perú, República Dominicana, Uruguay y Venezuela. Nuestro objetivo es describir el impacto de la pandemia –y el aislamiento social– en la conducta, el estado de ánimo, el sueño y la alimentación de las personas con TEA. A tal fin hemos relevado características sociodemográficas, habitacionales y modalidad de confinamiento. Analizamos los efectos de la discontinuidad de los servicios educativos y terapéuticos y valoramos los alcances de las intervenciones a distancia. Algunas de las consecuencias del confinamiento –obligatorio para la mayoría– han sido el aumento de irritabilidad en las personas con TEA, el incremento de la conducta de deambular, mayores niveles de ansiedad, dificultades en alimentación, sueño y concentración. La mayor parte de las familias han notado retrocesos en sus hijos durante el encierro. Se destacan los efectos beneficiosos de salidas y paseos. Muchos tratamientos y clases se han suspendido. Se subrayan positivamente las intervenciones a distancia. La crisis actual debería ser una oportunidad para reorganizar dispositivos de educación y tratamiento, atendiendo a la necesidad de cambios, con una perspectiva más ecológica, inclusiva y amigable con el autismo.