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

Profile of Service Use and Barriers to Access to Care among Brazilian Children and Adolescents with Autism Spectrum Disorders

Delayed diagnosis and a lack of adequate care for people with autism spectrum disorder (ASD) are related to worse outcomes and quality of life. This study aimed to identify the profile of service use, barriers to access care, and factors related to those barriers in Brazilian families with children with ASD. A total of 927 families with children with ASD (3-17 years) from five Brazilian regions completed an online version of the Caregivers Needs Survey. Results showed that the most used services were behavioral interventions and pharmacotherapy, while the most used professionals were neurologists, nutritionists, speech therapists, psychiatrists, psychologists, and pediatricians. The main barriers included waiting lists, costs, and the absence of services or treatment. Service use varied according to age, the region of residence, type of health care system used, and the parents/caregivers\u27 education. Access to behavioral interventions was more frequent among users of the private system/health insurance and families whose caregivers had higher education. The absence of specialized services/treatments was less frequent among residents of state capitals and families whose caregivers had higher levels of education. This study highlights how families with children/adolescents with ASD in Brazil face significant barriers to access care related to sociodemographic factors

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

CHOReOS_Requirements for the CHOReOS IDRE (D5.1)

The goal of this document is to elucidate the requirements that the various actors involved with future Internet choreographies will have from the CHOReOS Integrated Development and Runtime Environment (IDRE). Since the IDRE integrates the work performed in the work packages WP 2 - 4, the aforementioned requirements lead to the specification of requirements for WP 2 - 4, specifically those requirements which will govern how they will integrate with each other. We base our work on the conceptual model of CHOReOS defined in D1.2, and first present the main concepts used while discussing the IDRE, including the actors and use cases. This is followed by an exhaustive list of requirements pertaining to each functionality that the IDRE will provide with regard to design, development and deployment of choreographies

CHOReOS Middleware Specification (D3.1)

This deliverable specifies the main concepts of the CHOReOS middleware architecture. Starting from the Future Internet (FI) challenges for scalability, heterogeneity, mobility, awareness, and adaptation that have been investigated in prior work done in WP1, we introduce the aforementioned concepts to deal with the requirements derived from the FI challenges. In particular, we propose an extensible and scalable service discovery approach for the organization and discovery of services that relies on multiple service discovery protocols. Moreover, we introduce an extensible and scalable approach, based on the service bus paradigm, for service access that features the integration and adaptation of multiple interaction protocols. Furthermore, we propose solutions that enable the execution of FI service compositions that range from compositions of choreographed services, developed according to the CHOReOS development process, to massive compositions of things. Finally, we detail the Cloud & Grid middleware facilities that support the overall middleware and the choreographies that are built on it, via a unified API that provides access to multiple cloud infrastructures (e.g., Amazon EC2, HP Open Cirrus, private clouds)

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

Specification of the CHOReOS IDRE (D5.2)

This deliverable focuses on the design of the CHOReOS Integrated Development and Runtime Environment, aka CHOReOS IDRE, based on the supporting solutions developed within WP2, WP3 and WP4 during CHOReOS' 1st year. The document provides an overall description of the IDRE components, their respective functionalities and the integration dependencies between them, thereby defining the integration points between the components developed in WP2-3-4