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ERIC Number: EJ1269908
Record Type: Journal
Publication Date: 2020-Nov
Pages: 15
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1362-3613
EISSN: N/A
Available Date: N/A
Challenges, Priorities, Barriers to Care, and Stigma in Families of People with Autism: Similarities and Differences among Six Latin American Countries
Paula, Cristiane Silvestre; Cukier, Sebastián; Cunha, Graccielle Rodrigues; Irarrázaval, Matías; Montiel-Nava, Cecilia; Garcia, Ricardo; Rosoli, Analia; Valdez, Daniel; Bordini, Daniela; Shih, Andy; Garrido, Gabriela; Rattazzi, Alexia
Autism: The International Journal of Research and Practice, v24 n8 p2228-2242 Nov 2020
Lack of access to services and support is an important issue for people with autism, but in low- and middle-income countries there is a lack of data on this problem. The aims of this study were to describe the challenges and priorities, identify barriers to care, and map stigma among families of individuals with autism in Latin America. This survey was undertaken by the "Red Espectro Autista Latinoamerica" network, a coalition of researchers/clinicians from six Latin American countries; it comprised 2942 caregivers of children with autism from Brazil, Argentina, Chile, Uruguay, Venezuela, and the Dominican-Republic, who completed the Spanish/Portuguese version of the Caregiver Needs Survey. The survey showed that the main priorities were greater community awareness and improvements in education. The main barriers to care were waiting lists (50.2%), 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, 48.8% reported some type of financial problem, 47.4% had to reduce work hours, and 35.5% had to stop working because of their child's autism. This survey describes the main needs/challenges faced by individuals with autism in Latin America, helping to build data-driven strategies at a national/regional level.
SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: http://sagepub.com.bibliotheek.ehb.be
Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Identifiers - Location: Brazil; Argentina; Uruguay; Chile; Venezuela; Dominican Republic
Grant or Contract Numbers: N/A
Author Affiliations: N/A