Pilgrimage for an autism diagnosis: A study of Venezuelan parents' experiences.

It cannot be assumed that the experience of having an autistic child is the same across countries since demographic and systemic factors are as diverse as the manifestation of ASD symptomatology. This study explores the lived experiences of 20 Venezuelan parents after receiving an autism diagnosis for their child. Applied thematic analysis was used to analyze parental attitudes, challenges in identifying their child's delay, access to diagnostic services, beliefs towards autism, professional evaluations, family support, and perceptions toward health and educational services for autistic children. Venezuelan parents reported a generalized lack of autism awareness, an unsupportive school system, and judgment from their extended family. Despite the universal health coverage in the country, Venezuelan parents commented on the scarcity of services, as well as the lengthy and costly processes to receive an ASD diagnosis. The results support previous research findings showing that socioeconomic factors influence how parents experience the process of obtaining an autism diagnosis for their children. For most Venezuelan parents, it might imply a long journey in which limited resources and knowledge about autism will determine its route and length. For parents, cultural values and spiritual and religious beliefs will serve as both coping mechanisms and barriers to accessing services.

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.

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.

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.