Service encounters across the lifespan in individuals with autism spectrum disorders: Results from a multisite study in Latin America

Background Core symptoms of Autism Spectrum Disorder (ASD) continue to affect everyday life as children grow and transition into adulthood. That way, different services may be needed at various stages of their lifetimes. This study aimed to describe service encounters and hours of service per week for individuals with ASD in Latin American countries and compare the data from three age groups (preschoolers, school-aged, and adolescents). Methods: The data were obtained from an online survey adapted by Red Espectro Autista Latinoamerica (REAL) in 6 different countries in South & Central America. The total sample was composed of 2520 caregivers of children and adolescents with ASD. Results: Services encounters for Speech, Occupational and Behavioral Therapies decreased with patient age, while medication increased. Regardless of the age group, a large proportion of individuals (19-37%) were not receiving treatment, and those receiving treatment got fewer hours than best practice recommendations. For adolescents, the gaps in treatment are even greater and less consistent. Discussion Failure to offer timely identification and intervention for ASD will result in more impairment of the individual and burden for the family. Although there are several initiatives to develop more resources for this population in Latin-America, the provision of services for ASD is still undervalued. Many such individuals might not be receiving the services they need, while most children are mainly receiving therapies with low to moderate evidence at a frequency below the recommended standards

Age of diagnosis, service access, and rights of autistic individuals in Argentina: Caregivers reports of changes and similarities across time

Background: Many countries have developed health initiatives to protect those with disabilities and developmental concerns in the past few years. However, the needs of autistic individuals are still short of being fulfilled. Partially due to limited research expenditure, which would allow bridging the gap between evidence and practice, the long time it takes to implement passed laws, and the limited operationalization of inclusive policies. Objective: To quantitatively examine changes in the child\u27s age at the time of caregiver\u27s first developmental concerns and age of diagnosis of their autistic child across 5 years. Also, to address challenges experienced by caregivers (e.g., reported service barriers) and the work still needing to be done in Argentina based on caregivers\u27 reports of their priorities (e.g., ensuring their child receives better services). Methods: Two independent samples of caregivers of autistic individuals were surveyed by the Red Espectro Autista Latinoamerica (REAL) in 2015 (n = 763) and the World Health Organization (WHO) in 2020 (n = 422). Similar items in both surveys were compared through descriptive inferential analysis and chi-square tests for categorical variables. Results: Compared to the 2015 sample, for the 2020 sample, more caregivers reported an earlier age of first concerns and an earlier age of a professional diagnosis. In the 2020 sample, more children diagnosed before the age of three had a doctor or a teacher noticing the first developmental concern. Also, in this sample, fewer caregivers reported service barriers (e.g., limited availability, waitlist, costs, etc.) and a need for better social support and better health services. However, rates of caregivers indicating a need for more rights for autistic individuals and greater protection of existing rights increased. There was no change in the reported rate of family members who stopped working to care for the autistic individual. For both samples, there was statistically significant differences in individual (physician, teacher, caregiver) noticing first developmental concern and the age of diagnosis, with the majority having a caregiver noticing the first concern. Conclusion: The 5 years that separate both samples show an improvement in developmental concerns being noticed, a decrease in age of diagnosis, and an improvement in several service areas such as community awareness. Also, caregivers reported fewer barriers to service accessibility, thus suggesting a positive impact stemming from changes in public policies, non-profit organizations\u27 work through awareness campaigns, and advocates\u27 strives toward greater awareness. Nonetheless, a similar proportion of family members reported ceasing working to care for autistic individuals and perceived that the fundamental rights of their autistic children needed to be protected. These results imply that despite better care pathways in Argentina, there are still gaps when attempting to meet the needs of autistic individuals and their families. The present study provides a meaningful understanding of existing gaps and help exemplify the perceived improvements when non-profit agencies and advocates promote increased rights and community awareness in addition to the established laws focusing on ASD

Age of autism diagnosis in Latin American and Caribbean countries

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

Covid-19 y autismo: impacto en las personas con autismo y sus familias en Uruguay

La pandemia de covid-19 y las medidas asociadas determinaron cambios profundos en los individuos con trastorno del espectro autista (TEA) y sus familias. Se busca explorar estos efectos a nivel de las emociones y comportamientos en esta población en Uruguay. Dentro de un estudio multicéntrico de ocho países de Latinoamérica, se utilizó la submuestra de Uruguay para analizar los cambios de los comportamientos exhibidos por los individuos con TEA sobre la base de género y edad. Entre los 269 cuidadores que completaron una encuesta anónima, el 43,9 % reportó mayores problemas de convivencia y el 75,4 % reportó retrocesos. El empeoramiento de los comportamientos externalizados fue mayor en el sexo masculino y de los internalizados, en los adolescentes de 13 a 18 años. Estos resultados deberían considerarse a la hora de tomar medidas que comprometen la continuidad educativa, apoyos terapéuticos y de asistencia a las familias con personas con TEA en Uruguay. - COVID-19 pandemic and its associated measures, determined profound changes in individuals with autism spectrum disorder (ASD) and their families. Authors explore consequences regarding emotions and behaviors in this population in Uruguay. Within a multicentric study of eight Latin American countries, changes in behaviors in individuals with ASD based on gender and age were analyzed in the Uruguayan subsample. Among the 269 caregivers who completed an anonymous survey, 43.9% reported greater problems in daily life and 75.4% reported setbacks. The worsening of externalizing behaviors was greater in males. The internalizing ones were higher in adolescents aged 13 to 18 years. These results should be considered when taking measures that compromise educational continuity, therapeutic supports and assistance to families with people with ASD in Uruguay

Facing COVID-19: Situation of People with Autism and their Families in Latin America

We present a multicenter study conducted through an online survey of 1826 families of people with ASD from Argentina, Brazil, Chile, Mexico, Peru, the Dominican Republic, Uruguay and Venezuela. Our objective is to describe the impact of the pandemic –and social isolation– on the behavior, mood, sleep and diet of people with ASD. To this end, we have surveyed sociodemographic and housing characteristics and the modality of confinement. We analyze the effects of discontinuity in educational and therapeutic services and assess the scope of remote interventions. Some of the consequences of confinement –obligatory for the majority– has been increased irritability in people with ASD, increased wandering behavior, higher levels of anxiety, and difficulties in eating, sleeping and concentrating. Most of the families have noticed setbacks in their children during the confinement. The beneficial effects of outings and walks are highlighted. Many treatments and classes have been discontinued. Remote interventions are positively highlighted. The current crisis should be an opportunity to reorganize education and treatment devices, attending to the need for changes, with a more ecological, inclusive and autism-friendly perspective.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

Estrategia de atención temprana en centros de educación especial : manual de funcionamiento

Resumen basado en el de la publicaciónAnálisis del proyecto que busca ampliar la oferta de los centros educativos de Educación Especial públicos posibilitando el acceso a la educación a la población de niños de 0 a 5 años con necesidades educativas especiales asociadas a discapacidades múltiples o a trastornos del desarrollo en un espacio donde puedan recibir las orientaciones e intervenciones educativas necesarias para asegurar la máxima estimulación de las áreas de desarrollo que no se encuentren comprometidas.ES

Enfrentando al Covid-19: situación de las personas con autismo y sus familias en Latinoamérica

Presentamos un estudio multicéntrico realizado a través de una en-cuesta 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 es-tado de ánimo, el sueño y la alimentación de las personas con TEA. A tal fin hemos relevado características sociodemográficas, habitacionales y modalidad de confina-miento. Analizamos los efectos de la discontinuidad de los servicios educativos y te-rapéuticos 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 educa-ción y tratamiento, atendiendo a la necesidad de cambios, con una perspectiva más ecológica, inclusiva y amigable con el autismo. - We present a multicenter study conducted through an online survey of 1826 families of people with ASD from Argentina, Brazil, Chile, Mexico, Peru, the Dominican Republic, Uruguay and Venezuela. Our objective is to describe the impact of the pandemic –and social isolation– on the behavior, mood, sleep and diet of people with ASD. To this end, we have surveyed sociodemographic and housing characteris-tics and the modality of confinement. We analyze the effects of discontinuity in educational and therapeutic services and assess the scope of remote interventions.Some of the consequences of confinement –obligatory for the majority– has been increased irritability in people with ASD, increased wandering behavior, higher levels of anxiety, and difficulties in eating, sleeping and concentrating. Most of the families have noticed setbacks in their children during the confinement. The beneficial effects of outings and walks are highlighted. Many treatments and classes have been discontinued. Remot

Challenges, priorities, barriers to care, and stigma in families of people with autism: Similarities and differences among six Latin American countries

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

Use of allied-health services and medication among adults with ASD in Latin America

Abstract ASD is a neurodevelopmental disorder that affects people across the entire lifespan, yet most of the research identifying the health and medical needs for autistic individuals have been among minors. As individuals with ASD transition to emerging adulthood, the services, already limited, become less available. This study aimed to identify the use of services for Latin American adults on the spectrum. We surveyed 295 caregivers of adults with ASD from six Latin American countries. Comparing the results for all the possible services observed in this study, the adults in our sample were primarily underserved: 84.4%–95.9% were receiving zero hours per week, 3.7%–12.9% 1%–10 h, 0%–1.7% 11–20, and only 0%–1% above 20 h of services. Almost half of the sample used medication, and neurologists were the most consulted health providers. Next to inexistent health care usage in Latin American adults with ASD highlights socioeconomic and health disparities in service provision for ASD in the region. The lack of services places adults with ASD in Latin America at a higher risk of worse symptom severity than autistic adults from regions with broader access to services. Lay Summary This study aimed to identify the quantity of services received by adults with autism in Latin America. Most of our sample was not receiving health services yet almost half had access to medication. This could mean that adults with autism in Latin America are at higher risk for poorer health

Enfrentando al Covid-19: situación de las personas con autismo y sus familias en Latinoamérica

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