Autism Spectrum Disorders (ASD) are neurodevelopmental disorders of increasing prevalence. People with ASD have multiple health, education, and community needs, yet there is little information about their situation in Chile.
To learn about the demographic and clinical characteristics, caregiver’s first concerns, and age of diagnosis of ASD individuals.
Participants were parents/caregivers of ASD persons, who answered the Caregiver Needs Survey, developed by Autism Speaks specifically for this purpose, and translated into Spanish. The survey is comprised of 4 sections: demographic information, characteristics of the ASD individual, past and present use of Health and Education Services, and parents/caregivers’ perceptions of satisfaction, impact, stigma, and quality of life. Data from the first two sections are reported in this paper.
The survey was answered by 291 caregivers (86% mothers) of 291 mostly male ASDs (89%), aged between 1-40 years (X: 10.4 SD: 6.1). The average age of parents’ first concerns was 29.2m (SD: 23.8) where the main ones were: interaction difficulties (79.4%), unusual response to sensory stimuli (69.8%), behavioral problems (65.3%), unusual gestures/movements (64.3%), and lack of eye contact (63.6%). The ave rage age of diagnosis was 58m (SD: 36.5), with an average delay of diagnosis of 29m. The diagnosis was most frequently made by pediatric neurologists (44.7%), child psychiatrists (19.2%), and pedia tricians (5.5%). The most frequent comorbidities were language impairment, cognitive deficit, and behavioral problems.
The late age of diagnosis of ASD and the large gap between the age of first concerns and diagnosis, represent a critical loss of treatment opportunities and jeopardize the chances of a better long-term outcome.