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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.
Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Child , Female , Humans , Adolescent , Autistic Disorder/diagnosis , Latin America , Autism Spectrum Disorder/diagnosis , Caribbean RegionABSTRACT
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.
ABSTRACT
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.
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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.
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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.
Subject(s)
Autistic Disorder , Caregivers , Caregivers/psychology , Chile , Female , Humans , Male , Personal Satisfaction , Quality of LifeABSTRACT
The dearth of child and adolescent mental health services (CAMHS) is a global problem. Integrating CAMHS in primary care has been offered as a solution. We sampled integrated care perspectives from colleagues around the world. Our findings include various models of integrated care namely: the stepped care model in Australia; shared care in the United Kingdom (UK) and Spain; school-based collaborative care in Qatar, Singapore and the state of Texas in the US; collaborative care in Canada, Brazil, US, and Uruguay; coordinated care in the US; and, developing collaborative care models in low-resource settings, like Kenya and Micronesia. These findings provide insights into training initiatives necessary to build CAMHS workforce capacity using integrated care models, each with the ultimate goal of improving access to care. Despite variations and progress in implementing integrated care models internationally, common challenges exist: funding within complex healthcare systems, limited training mechanisms, and geopolitical/policy issues. Supportive healthcare policy, robust training initiatives, ongoing quality improvement and measurement of outcomes across programs would provide data-driven support for the expansion of integrated care and ensure its sustainability.
Subject(s)
Delivery of Health Care, Integrated , Mental Health Services , Adolescent , Adult , Child , Family , Humans , Internationality , Mental HealthABSTRACT
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.
Subject(s)
Autistic Disorder , Caregivers , Child , Humans , Latin America , Social Stigma , Surveys and QuestionnairesABSTRACT
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.
Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Adult , Autism Spectrum Disorder/drug therapy , Caregivers , Health Services , Humans , Latin AmericaABSTRACT
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.
Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Brazil , Child , Health Services Accessibility , Humans , Latin America , VenezuelaABSTRACT
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.
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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.
Subject(s)
Affective Symptoms/epidemiology , Child Behavior Disorders/epidemiology , Child Behavior , Affective Symptoms/diagnosis , Checklist , Child , Child Behavior Disorders/diagnosis , Cross-Cultural Comparison , Female , Humans , Male , Uruguay/epidemiologyABSTRACT
Se presentan ocho pacientes HIV (+) (2 femeninos y 6 masculinos) de un total de 134 pacientes HIV (+) que consultaron a nuestro Servicio en el período comprendido entre los años 1995-1998. En todos los casos se observaron pápulas diseminadas en tronco y miembros, estériles, que se acompañaron de prurito crónico. La erupción apareció concomitantemente o precedida de otras manifestaciones cutáneas en estos pacientes, fundamentalmente micóticas (candidiasis) y virales (herpes), coincidiendo con un recuento de células CD4 inferior a 200/mm3. El diagnóstico fue confirmado por biopsia. El tratamiento instaurado fue antihistamínico (cetirizina), observándose respuesta favorable al mismo. El motivo de la presentación es la aparición de esta patología en pacientes HIV (+) cuyo recuento de células CD4 es igual o inferior a 200/mm3 comportándose en todos los casos como marcador de mal pronóstico (AU)
Subject(s)
Humans , Male , Female , Adult , Acquired Immunodeficiency Syndrome/complications , Exanthema/etiology , Immunosuppression Therapy/adverse effects , Exanthema/diagnosis , Pruritus/etiology , Skin Diseases/etiologyABSTRACT
Se presentan ocho pacientes HIV (+) (2 femeninos y 6 masculinos) de un total de 134 pacientes HIV (+) que consultaron a nuestro Servicio en el período comprendido entre los años 1995-1998. En todos los casos se observaron pápulas diseminadas en tronco y miembros, estériles, que se acompañaron de prurito crónico. La erupción apareció concomitantemente o precedida de otras manifestaciones cutáneas en estos pacientes, fundamentalmente micóticas (candidiasis) y virales (herpes), coincidiendo con un recuento de células CD4 inferior a 200/mm3. El diagnóstico fue confirmado por biopsia. El tratamiento instaurado fue antihistamínico (cetirizina), observándose respuesta favorable al mismo. El motivo de la presentación es la aparición de esta patología en pacientes HIV (+) cuyo recuento de células CD4 es igual o inferior a 200/mm3 comportándose en todos los casos como marcador de mal pronóstico
Subject(s)
Humans , Male , Female , Adult , Exanthema/etiology , Acquired Immunodeficiency Syndrome/complications , Exanthema/diagnosis , Immunosuppression Therapy/adverse effects , Pruritus/etiology , Skin Diseases/etiologyABSTRACT
Vasculitis livedoide es un síndrome cutáneo que posee un cuadro clínico característico y corresponde a cambios histopatológicos definidos como vasculitis hialinizante segmentaria con oclusión trombótica en la mayoría de los casos. Objetivo del estudio: Definir las características clínicas ante un caso probable de vasculitis livedoide. Material y método: Se estudian cuatro pacientes de sexo femenino, mediante protocolo que incluye: historia clínica y examen físico completo, laboratorio de rutina, coagulograma y estudio inmunológico, función tiroidea, hepatograma, estudio vascular periférico y biopsia cutánea con inmunofluorescencia directa. Resultados: Las asociaciones halladas fueron: patología vascular periférica, anticuerpos anticardiolipinas y patología tiroidea
Subject(s)
Humans , Female , Adolescent , Adult , Vasculitis/diagnosis , Diagnosis, Differential , Vasculitis/pathology , Vasculitis/therapyABSTRACT
Vasculitis livedoide es un síndrome cutáneo que posee un cuadro clínico característico y corresponde a cambios histopatológicos definidos como vasculitis hialinizante segmentaria con oclusión trombótica en la mayoría de los casos. Objetivo del estudio: Definir las características clínicas ante un caso probable de vasculitis livedoide. Material y método: Se estudian cuatro pacientes de sexo femenino, mediante protocolo que incluye: historia clínica y examen físico completo, laboratorio de rutina, coagulograma y estudio inmunológico, función tiroidea, hepatograma, estudio vascular periférico y biopsia cutánea con inmunofluorescencia directa. Resultados: Las asociaciones halladas fueron: patología vascular periférica, anticuerpos anticardiolipinas y patología tiroidea (AU)
Subject(s)
Humans , Female , Adolescent , Adult , Vasculitis/diagnosis , Diagnosis, Differential , Vasculitis/pathology , Vasculitis/therapyABSTRACT
Para comprender el proceso de desmineralización-remineralización debemos partir de la base que la superficie del esmalte no es una superficie estática, sino que actúa como una membrana de actividad selectiva que permite la entrada de ciertos iones. La maduración del esmalte es consecuencia de un intercambio contínuo entre película-placa, superficie de esmalte y fluído bucal. Cuando los cristales de hidroxiapatita pierden su capa de iones absorbidos, produciendo la salida de iones CO y PO4, se tiene en consecuencia la desmineralización. Por el contrario, cuando los cristales puden absorber iones aumentan de tamaño y cierran las porosidades favoreciendo la remineralización. Nosotros contamos con la valiosa ayuda del flúor en sus distintas formas que facilitan la absorción de iones a través de la fase fluída produciendo la recristalización de la superficie del esmalte
