Age of autism diagnosis in Latin American and Caribbean countries / Maria C. MONTENEGRO ; Ana C. RAMIREZ ; Daniel VALDEZ ; Analia ROSOLI ; Ricardo GARCIA ; Gabriela GARRIDO ; Sebastián CUKIER ; Alexia RATTAZZI ; Cristiane Silvestre PAULA in Autism, 28-1 (January 2024)  

Public ISBD [article]  inAutism > 28-1 (January 2024) . - p.58?72 Titre : Age of autism diagnosis in Latin American and Caribbean countries Type de document : Texte imprimé et/ou numérique Auteurs : Maria C. MONTENEGRO, Auteur ; Ana C. RAMIREZ, Auteur ; Daniel VALDEZ, Auteur ; Analia ROSOLI, Auteur ; Ricardo GARCIA, Auteur ; Gabriela GARRIDO, Auteur ; Sebastián CUKIER, Auteur ; Alexia RATTAZZI, Auteur ; Cristiane Silvestre PAULA, Auteur Article en page(s) : p.58?72 Mots-clés : age of diagnosis  autism spectrum disorders  caregivers  first observed concerns  Latin America  risk factors Index. décimale : PER Périodiques Résumé : 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. En ligne : https://dx.doi.org/10.1177/13623613221147345 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519 [article] Age of autism diagnosis in Latin American and Caribbean countries [Texte imprimé et/ou numérique] / Maria C. MONTENEGRO, Auteur ; Ana C. RAMIREZ, Auteur ; Daniel VALDEZ, Auteur ; Analia ROSOLI, Auteur ; Ricardo GARCIA, Auteur ; Gabriela GARRIDO, Auteur ; Sebastián CUKIER, Auteur ; Alexia RATTAZZI, Auteur ; Cristiane Silvestre PAULA, Auteur . - p.58?72. in Autism > 28-1 (January 2024) . - p.58?72 Mots-clés : age of diagnosis  autism spectrum disorders  caregivers  first observed concerns  Latin America  risk factors Index. décimale : PER Périodiques Résumé : 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. En ligne : https://dx.doi.org/10.1177/13623613221147345 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519

Autism screening and diagnosis in low resource settings: Challenges and opportunities to enhance research and services worldwide / Maureen S. DURKIN in Autism Research, 8-5 (October 2015)  

Public ISBD [article]  inAutism Research > 8-5 (October 2015) . - p.473-476 Titre : Autism screening and diagnosis in low resource settings: Challenges and opportunities to enhance research and services worldwide Type de document : Texte imprimé et/ou numérique Auteurs : Maureen S. DURKIN, Auteur ; Mayada ELSABBAGH, Auteur ; Josephine BARBARO, Auteur ; Melissa GLADSTONE, Auteur ; Francesca HAPPE, Auteur ; Rosa A. HOEKSTRA, Auteur ; Li-Ching LEE, Auteur ; Alexia RATTAZZI, Auteur ; Jennifer STAPEL-WAX, Auteur ; Wendy L. STONE, Auteur ; Helen TAGER-FLUSBERG, Auteur ; Audrey THURM, Auteur ; Mark TOMLINSON, Auteur ; Andy SHIH, Auteur Article en page(s) : p.473-476 Langues : Anglais (eng) Mots-clés : diagnosis  early detection  epidemiology  intervention Index. décimale : PER Périodiques Résumé : Most research into the epidemiology, etiology, clinical manifestations, diagnosis and treatment of autism is based on studies in high income countries. Moreover, within high income countries, individuals of high socioeconomic status are disproportionately represented among participants in autism research. Corresponding disparities in access to autism screening, diagnosis, and treatment exist globally. One of the barriers perpetuating this imbalance is the high cost of proprietary tools for diagnosing autism and for delivering evidence-based therapies. Another barrier is the high cost of training of professionals and para-professionals to use the tools. Open-source and open access models provide a way to facilitate global collaboration and training. Using these models and technologies, the autism scientific community and clinicians worldwide should be able to work more effectively and efficiently than they have to date to address the global imbalance in autism knowledge and at the same time advance our understanding of autism and our ability to deliver cost-effective services to everyone in need. Autism Res 2015, 8: 473–476. © 2015 International Society for Autism Research, Wiley Periodicals, Inc. En ligne : http://dx.doi.org/10.1002/aur.1575 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=269 [article] Autism screening and diagnosis in low resource settings: Challenges and opportunities to enhance research and services worldwide [Texte imprimé et/ou numérique] / Maureen S. DURKIN, Auteur ; Mayada ELSABBAGH, Auteur ; Josephine BARBARO, Auteur ; Melissa GLADSTONE, Auteur ; Francesca HAPPE, Auteur ; Rosa A. HOEKSTRA, Auteur ; Li-Ching LEE, Auteur ; Alexia RATTAZZI, Auteur ; Jennifer STAPEL-WAX, Auteur ; Wendy L. STONE, Auteur ; Helen TAGER-FLUSBERG, Auteur ; Audrey THURM, Auteur ; Mark TOMLINSON, Auteur ; Andy SHIH, Auteur . - p.473-476. Langues : Anglais (eng) in Autism Research > 8-5 (October 2015) . - p.473-476 Mots-clés : diagnosis  early detection  epidemiology  intervention Index. décimale : PER Périodiques Résumé : Most research into the epidemiology, etiology, clinical manifestations, diagnosis and treatment of autism is based on studies in high income countries. Moreover, within high income countries, individuals of high socioeconomic status are disproportionately represented among participants in autism research. Corresponding disparities in access to autism screening, diagnosis, and treatment exist globally. One of the barriers perpetuating this imbalance is the high cost of proprietary tools for diagnosing autism and for delivering evidence-based therapies. Another barrier is the high cost of training of professionals and para-professionals to use the tools. Open-source and open access models provide a way to facilitate global collaboration and training. Using these models and technologies, the autism scientific community and clinicians worldwide should be able to work more effectively and efficiently than they have to date to address the global imbalance in autism knowledge and at the same time advance our understanding of autism and our ability to deliver cost-effective services to everyone in need. Autism Res 2015, 8: 473–476. © 2015 International Society for Autism Research, Wiley Periodicals, Inc. En ligne : http://dx.doi.org/10.1002/aur.1575 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=269

Challenges, priorities, barriers to care, and stigma in families of people with autism: Similarities and differences among six Latin American countries / Cristiane Silvestre PAULA in Autism, 24-8 (November 2020)  

Public ISBD [article]  inAutism > 24-8 (November 2020) . - p.2228-2242 Titre : Challenges, priorities, barriers to care, and stigma in families of people with autism: Similarities and differences among six Latin American countries Type de document : Texte imprimé et/ou numérique Auteurs : Cristiane Silvestre PAULA, Auteur ; Sebastián CUKIER, Auteur ; Graccielle Rodrigues CUNHA, Auteur ; Matías IRARRÁZAVAL, Auteur ; Cecilia MONTIEL-NAVA, Auteur ; Ricardo GARCIA, Auteur ; Analia ROSOLI, Auteur ; Daniel VALDEZ, Auteur ; Daniela BORDINI, Auteur ; Andy SHIH, Auteur ; Gabriela GARRIDO, Auteur ; Alexia RATTAZZI, Auteur Article en page(s) : p.2228-2242 Langues : Anglais (eng) Mots-clés : *autism  *economic costs  *healthcare utilization  *stigma  *treatment barriers Index. décimale : PER Périodiques Résumé : 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. En ligne : http://dx.doi.org/10.1177/1362361320940073 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=431 [article] Challenges, priorities, barriers to care, and stigma in families of people with autism: Similarities and differences among six Latin American countries [Texte imprimé et/ou numérique] / Cristiane Silvestre PAULA, Auteur ; Sebastián CUKIER, Auteur ; Graccielle Rodrigues CUNHA, Auteur ; Matías IRARRÁZAVAL, Auteur ; Cecilia MONTIEL-NAVA, Auteur ; Ricardo GARCIA, Auteur ; Analia ROSOLI, Auteur ; Daniel VALDEZ, Auteur ; Daniela BORDINI, Auteur ; Andy SHIH, Auteur ; Gabriela GARRIDO, Auteur ; Alexia RATTAZZI, Auteur . - p.2228-2242. Langues : Anglais (eng) in Autism > 24-8 (November 2020) . - p.2228-2242 Mots-clés : *autism  *economic costs  *healthcare utilization  *stigma  *treatment barriers Index. décimale : PER Périodiques Résumé : 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. En ligne : http://dx.doi.org/10.1177/1362361320940073 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=431

Service encounters across the lifespan in individuals with autism spectrum disorders: Results from a multisite study in Latin America / Cecilia MONTIEL-NAVA in Research in Autism Spectrum Disorders, 79 (November 2020)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 79 (November 2020) . - 101670 Titre : Service encounters across the lifespan in individuals with autism spectrum disorders: Results from a multisite study in Latin America Type de document : Texte imprimé et/ou numérique Auteurs : Cecilia MONTIEL-NAVA, Auteur ; Sebastián CUKIER, Auteur ; Gabriela GARRIDO, Auteur ; Daniel VALDEZ, Auteur ; Cristiane Silvestre PAULA, Auteur ; Ricardo GARCIA, Auteur ; Analia ROSOLI, Auteur ; Matías IRARRÁZAVAL, Auteur ; Alexia RATTAZZI, Auteur Article en page(s) : 101670 Langues : Anglais (eng) Mots-clés : Autism spectrum disorders  Lifespan  Services  Caregiver  Latin-America  Latino Index. décimale : PER Périodiques Résumé : 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 South & Central American countries. The total sample was composed of 2520 caregivers of children and adolescents with ASD. Results Service 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 the family burden. 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. En ligne : https://doi.org/10.1016/j.rasd.2020.101670 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=434 [article] Service encounters across the lifespan in individuals with autism spectrum disorders: Results from a multisite study in Latin America [Texte imprimé et/ou numérique] / Cecilia MONTIEL-NAVA, Auteur ; Sebastián CUKIER, Auteur ; Gabriela GARRIDO, Auteur ; Daniel VALDEZ, Auteur ; Cristiane Silvestre PAULA, Auteur ; Ricardo GARCIA, Auteur ; Analia ROSOLI, Auteur ; Matías IRARRÁZAVAL, Auteur ; Alexia RATTAZZI, Auteur . - 101670. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 79 (November 2020) . - 101670 Mots-clés : Autism spectrum disorders  Lifespan  Services  Caregiver  Latin-America  Latino Index. décimale : PER Périodiques Résumé : 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 South & Central American countries. The total sample was composed of 2520 caregivers of children and adolescents with ASD. Results Service 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 the family burden. 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. En ligne : https://doi.org/10.1016/j.rasd.2020.101670 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=434

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