Age of autism diagnosis in Latin American and Caribbean countries.

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.

Where I am from matters: factors influencing behavioral and emotional changes in autistic individuals during COVID-19 in Latin America.

Background: The COVID-19 pandemic brought an increased incidence of disease and mortality in the world at large, making it a particularly salient and stressful life event. For those individuals residing in Latin America, the pandemic was met with fragmented healthcare systems, economic downturn, and sociopolitical crisis which puts autistic individuals at risk for more detrimental outcomes. Behavioral and emotional challenges experienced by autistic individuals at the beginning of the pandemic could later develop into more severe symptomatology as the pandemic progresses. The present study aimed to explore changes in dysregulated (overt and internalizing) behaviors and preoccupation with getting sick during the COVID-19 pandemic among autistic children in 7 Latin American countries. Method: Sample consisted of 1,743 caregivers, residing in: Argentina (n = 677, 38.8%) Brazil (n = 156, 9%), Chile (n = 251, 14.4%), Dominican Republic (n = 171, 9.8%), Mexico (n = 126, 7.2%), Uruguay (n = 259, 14.9%) and Venezuela (n = 103, 5.9%). The majority of caregivers who completed the questionnaire were mothers (85.1%), and most had a male autistic child (81.6%). A series of independent sample t-tests were conducted to assess country differences in dysregulated behaviors and preoccupation with getting sick. Linear regressions were conducted to identify which demographic characteristics and micro-level contextual factors predicted dysregulated overt behaviors and psychological changes. Results: Contextual factors, such as country of residence, were related to preoccupation with getting sick and dysregulated behavior. Particularly, residing in Mexico and Brazil were related to changes in preoccupation with getting sick and mental health concerns. Coexistence predicted dysregulated internalizing behaviors, while being older significantly predicted preoccupation with getting sick. Increased screen time only predicted anxiety. Conclusion: Our findings highlight differences and predictions of behavioral challenges and psychological changes based on certain contextual factors and individual characteristics while experiencing severe life stressors such as a worldwide pandemic. This knowledge could help inform policies and decrees aimed at protecting those most vulnerable due to their increased difficulty adapting to change.

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' 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.

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's age at the time of caregiver's 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' 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' work through awareness campaigns, and advocates' 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.

[Survey for Caregivers of People with Autism Spectrum in Chile: Access to Health and Education Services, Satisfaction, Quality of Life And Stigma]. / Encuesta para Cuidadores de Personas del Espectro Autista en Chile. Acceso a Servicios de Salud y Educación, Satisfacción, Calidad de Vida y Estigma.

INTRODUCTION: People on the Autism Spectrum (AS) face multiple health, education, social, and economic pro blems. There is limited available information in Chile. OBJECTIVE: To describe the access and satisfac tion with health and education services, family and economic impact, stigma, and quality of life of people with AS and their families in Chile. SUBJECTS AND METHOD: Parents/caregivers of AS persons completed the Caregiver Needs Survey, developed by Autism Speaks, which includes demographic information, characteristics of AS persons (previously published), use of health and education servi ces, parents/caregivers' perceptions of satisfaction, impact, stigma, and quality of life. RESULTS: 291 caregivers (86% mothers) of 291 AS persons participated, 89% were male, aged 1-40 years (X:10.4 SD:6.1). Limited and unspecific access to health services is reported. 77% are regularly attending a standard or special school system. Families pay for over 60% of therapies/medical care and over 40% of specific educational support, and 25% report difficulties in accessing services. The family income is affected by resignation (35%) or reduced working hours (46%). Stigma is associated with possi ble discrimination and feelings of helplessness. The main priorities mentioned for a better quality of life are support for inclusive schooling, better adjustment at home, and improved socialization. CONCLUSIONS: This survey provides relevant information about the needs, barriers, and challenges of AS people in Chile and highlights the difficulties in accessing health services and the severe impact on family income. Feelings of stigma, discrimination, and helplessness are reported. Collaborative strategies are needed to improve the quality and access to services and to reduce the economic and mental health burden on the family.

Perceived Stigma and Barriers to Accessing Services: Experience of Caregivers of Autistic Children Residing in Latin America.

BACKGROUND: Relationship of perceived stigma and barrier to service access among Latino populations with autism in cross-cultural settings has not been fully explored. AIM: The present study explored the relationship between difficulty accessing services and perceived stigma among caregivers of autistic children in Latin America. Additionally, explore contextual factors that better explain the perception of stigma when accessing services. METHODS AND PROCEDURE: Approximately 2500 caregivers from six Latin American countries completed an online survey. Descriptive inferential analysis and a pointbiserial correlation were conducted to understand direct relationship between difficulty accessing services and perceived stigma and to test their relationship. Added contextual factors contributing to this relationship were examined through a binary logistic regression. OUTCOMES AND RESULTS: Barriers to accessing services predicted stigma. Contextual factors such as country of residence, frustration experienced by caregivers, gender of autistic child and challenging behaviours had higher odds of experiencing some form of perceived stigma. CONCLUSIONS AND IMPLICATIONS: These results suggest experiences with stigma to be heavily influenced by environmental factors such cultural differences which in combination with contextual factors could further increase the likelihood of perceiving stigma. When observing stigma within a social-cognitive approach, it is possible that a strong-held adherence to cultural norms, in addition to negative experiences (e.g., frustration) when accessing services, could be influencing caregivers perceived stigma.

Covid-19 y autismo: impacto en las personas con autismo y sus familias en Uruguay / Covid-19 and autism: impact on people with autism and their families in 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 pro-found 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 sub-sample. 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.

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

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.

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

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.