Age of diagnosis, service access, and rights of autistic individuals in Argentina: Caregivers reports of changes and similarities across time
BackgroundMany 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...
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2022-08-01
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| Series: | Frontiers in Psychiatry |
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| Online Access: | https://www.frontiersin.org/articles/10.3389/fpsyt.2022.915380/full |
| _version_ | 1828182565386715136 |
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| author | Maria Cecilia Montenegro Estefani Bernal Sebastian Cukier Daniel Valdez Alexia Rattazzi Gabriela Garrido Analia Rosoli Cristiane Silvestre Paula Ricardo Garcia Cecilia Montiel-Nava |
| author_facet | Maria Cecilia Montenegro Estefani Bernal Sebastian Cukier Daniel Valdez Alexia Rattazzi Gabriela Garrido Analia Rosoli Cristiane Silvestre Paula Ricardo Garcia Cecilia Montiel-Nava |
| author_sort | Maria Cecilia Montenegro |
| collection | DOAJ |
| description | BackgroundMany 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.ObjectiveTo 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).MethodsTwo 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.ResultsCompared 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.ConclusionThe 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. |
| first_indexed | 2024-04-12T06:20:24Z |
| format | Article |
| id | doaj.art-65bb3f93e98c415b848ead4f1ee00a53 |
| institution | Directory Open Access Journal |
| issn | 1664-0640 |
| language | English |
| last_indexed | 2024-04-12T06:20:24Z |
| publishDate | 2022-08-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Psychiatry |
| spelling | doaj.art-65bb3f93e98c415b848ead4f1ee00a532022-12-22T03:44:21ZengFrontiers Media S.A.Frontiers in Psychiatry1664-06402022-08-011310.3389/fpsyt.2022.915380915380Age of diagnosis, service access, and rights of autistic individuals in Argentina: Caregivers reports of changes and similarities across timeMaria Cecilia Montenegro0Estefani Bernal1Sebastian Cukier2Daniel Valdez3Alexia Rattazzi4Gabriela Garrido5Analia Rosoli6Cristiane Silvestre Paula7Ricardo Garcia8Cecilia Montiel-Nava9Department of Psychological Sciences, University of Texas Rio Grande Valley, Edinburg, TX, United StatesDepartment of Psychological Sciences, University of Texas Rio Grande Valley, Edinburg, TX, United StatesResearch Department, Programa Argentino para Niños, Adolescentes y Adultos con Condiciones del Espectro Autista (PANAACEA), Buenos Aires, ArgentinaResearch Department, Facultad Latinoamericana de Ciencias Sociales (FLACSO), Buenos Aires, ArgentinaResearch Department, Programa Argentino para Niños, Adolescentes y Adultos con Condiciones del Espectro Autista (PANAACEA), Buenos Aires, ArgentinaDepartment of Child and Adolescent Psychiatry, Universidad de la República, Montevideo, UruguayResearch Department, Organización Estados Iberoamericanos para la Educación, la Ciencia y la Cultura (OEI), Santo Domingo, Dominican RepublicResearch Department, Programa de Pós-Graduação em Distúrbios do Desenvolvimento Universidade Presbiteriana Mackenzie (UPM), São Paulo, SP, BrazilResearch Department, Universidad de Chile, Santiago, ChileDepartment of Psychological Sciences, University of Texas Rio Grande Valley, Edinburg, TX, United StatesBackgroundMany 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.ObjectiveTo 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).MethodsTwo 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.ResultsCompared 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.ConclusionThe 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.https://www.frontiersin.org/articles/10.3389/fpsyt.2022.915380/fullcaregiversASDArgentinaage of diagnosisfirst concernservice barriers |
| spellingShingle | Maria Cecilia Montenegro Estefani Bernal Sebastian Cukier Daniel Valdez Alexia Rattazzi Gabriela Garrido Analia Rosoli Cristiane Silvestre Paula Ricardo Garcia Cecilia Montiel-Nava Age of diagnosis, service access, and rights of autistic individuals in Argentina: Caregivers reports of changes and similarities across time Frontiers in Psychiatry caregivers ASD Argentina age of diagnosis first concern service barriers |
| title | Age of diagnosis, service access, and rights of autistic individuals in Argentina: Caregivers reports of changes and similarities across time |
| title_full | Age of diagnosis, service access, and rights of autistic individuals in Argentina: Caregivers reports of changes and similarities across time |
| title_fullStr | Age of diagnosis, service access, and rights of autistic individuals in Argentina: Caregivers reports of changes and similarities across time |
| title_full_unstemmed | Age of diagnosis, service access, and rights of autistic individuals in Argentina: Caregivers reports of changes and similarities across time |
| title_short | Age of diagnosis, service access, and rights of autistic individuals in Argentina: Caregivers reports of changes and similarities across time |
| title_sort | age of diagnosis service access and rights of autistic individuals in argentina caregivers reports of changes and similarities across time |
| topic | caregivers ASD Argentina age of diagnosis first concern service barriers |
| url | https://www.frontiersin.org/articles/10.3389/fpsyt.2022.915380/full |
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