Montenegro Maria Cecilia, Bernal Estefani, Cukier Sebastian, Valdez Daniel, Rattazzi Alexia, Garrido Gabriela, Rosoli Analia, Silvestre Paula Cristiane, Garcia Ricardo, Montiel-Nava Cecilia
Department of Psychological Sciences, University of Texas Rio Grande Valley, Edinburg, TX, United States.
Research Department, Programa Argentino para Niños, Adolescentes y Adultos con Condiciones del Espectro Autista (PANAACEA), Buenos Aires, Argentina.
Front Psychiatry. 2022 Aug 16;13:915380. doi: 10.3389/fpsyt.2022.915380. eCollection 2022.
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.
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).
Two independent samples of caregivers of autistic individuals were surveyed by the Red Espectro Autista Latinoamerica (REAL) in 2015 ( = 763) and the World Health Organization (WHO) in 2020 ( = 422). Similar items in both surveys were compared through descriptive inferential analysis and chi-square tests for categorical variables.
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.
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.
在过去几年里，许多国家都制定了健康倡议，以保护残疾人和有发育问题的人群。然而，自闭症患者的需求仍未得到充分满足。部分原因是研究经费有限，这使得难以弥合证据与实践之间的差距，实施已通过法律所需的时间较长，以及包容性政策的实施有限。
定量研究5年间照顾者首次发现发育问题时孩子的年龄以及其自闭症孩子的诊断年龄的变化。此外，根据照顾者对其优先事项的报告（例如确保孩子获得更好的服务），探讨照顾者所面临的挑战（例如报告的服务障碍）以及在阿根廷仍需开展的工作。
拉丁美洲自闭症光谱组织（REAL）在2015年对两个独立的自闭症患者照顾者样本进行了调查（n = 763），世界卫生组织（WHO）在2020年进行了调查（n = 422）。通过描述性推断分析和分类变量的卡方检验对两项调查中的相似项目进行比较。
与2015年的样本相比，2020年的样本中，更多照顾者报告首次发现问题的年龄更早，专业诊断的年龄也更早。在2020年的样本中，更多在三岁前被诊断的儿童有医生或教师注意到首次发育问题。此外，在这个样本中，报告服务障碍（例如可获得性有限、等候名单、费用等）以及需要更好的社会支持和更好的医疗服务的照顾者较少。然而，表明需要为自闭症患者争取更多权利以及加强对现有权利保护的照顾者比例有所增加。报告因照顾自闭症患者而停止工作的家庭成员比例没有变化。对于两个样本，在个人（医生、教师、照顾者）注意到首次发育问题和诊断年龄方面存在统计学显著差异，大多数是照顾者注意到首次问题。
两个样本相隔的5年显示出在发育问题被注意到方面有所改善，诊断年龄降低，以及在社区意识等几个服务领域有所改善。此外，照顾者报告的服务可及性障碍较少，这表明公共政策的变化、非营利组织通过提高认识活动所做的工作以及倡导者为提高认识所做的努力产生了积极影响。尽管如此，仍有相似比例的家庭成员报告因照顾自闭症患者而停止工作，并认为他们自闭症孩子的基本权利需要得到保护。这些结果意味着，尽管阿根廷的照护途径有所改善，但在试图满足自闭症患者及其家庭的需求时仍存在差距。本研究对现有差距提供了有意义的理解，并有助于例证当非营利机构和倡导者除了关注自闭症谱系障碍的既定法律外，还促进增加权利和社区意识时所察觉到的改善。
