ERIC Number: EJ1465383
Record Type: Journal
Publication Date: 2025-Mar
Pages: 18
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1362-3613
EISSN: EISSN-1461-7005
Available Date: 0000-00-00
Journeys towards Accessing an Autism Diagnosis and Associated Support: A Survey of Families of Autistic Children in Ecuador
Paulina Buffle1; Thalia Cavadini1; María de Lourdes Ortega2; Cristina Armijos3,4; Patricia Soto4; Edouard Gentaz1; Laura Crane5
Autism: The International Journal of Research and Practice, v29 n3 p596-613 2025
There has been limited research on families of autistic children in Ecuador, especially in relation to their experiences of accessing a diagnosis and associated support. In this study, we surveyed 767 families about their diagnostic and post-diagnostic journeys. Of these, 651 families had children who had received a formal autism diagnosis. In this group, we found that families usually suspected that their children may be developing atypically when they were between 6 and 48 months of age; families typically consulted a professional shortly after noticing signs of atypical development (e.g. within 6 months); most children received a diagnosis before the age of 48 months; and families typically reported consulting four or more different professionals to attain a diagnosis for their children. Families' feelings and thoughts related to the diagnostic and post-diagnostic journey were often negative and were underpinned by concerns around a lack of information and services. We conclude with recommendations for optimal diagnostic and post-diagnostic support for autistic children and their families in Ecuador.
Descriptors: Foreign Countries, Autism Spectrum Disorders, Clinical Diagnosis, Family Attitudes, Needs, Services, Experience, Children, Access to Health Care, Parent Attitudes, Symptoms (Individual Disorders), Family Characteristics
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Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Identifiers - Location: Ecuador
Grant or Contract Numbers: N/A
Author Affiliations: 1University of Geneva, Switzerland; 2Asociación de Padres y Amigos para el Apoyo y la Defensa de los Derechos de las Personas con Autismo del Ecuador (APADA); 3Universidad de los Hemisferios, Ecuador; 4Red Autismo Ecuador; 5University of Birmingham, UK