Journeys towards accessing an autism diagnosis and associated support: a survey of families of autistic children in Ecuador

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 six 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.