ABSTRACT
INTRODUCTION: People on the Autism Spectrum (AS) face multiple health, education, social, and economic pro blems. There is limited available information in Chile. OBJECTIVE: To describe the access and satisfac tion with health and education services, family and economic impact, stigma, and quality of life of people with AS and their families in Chile. SUBJECTS AND METHOD: Parents/caregivers of AS persons completed the Caregiver Needs Survey, developed by Autism Speaks, which includes demographic information, characteristics of AS persons (previously published), use of health and education servi ces, parents/caregivers' perceptions of satisfaction, impact, stigma, and quality of life. RESULTS: 291 caregivers (86% mothers) of 291 AS persons participated, 89% were male, aged 1-40 years (X:10.4 SD:6.1). Limited and unspecific access to health services is reported. 77% are regularly attending a standard or special school system. Families pay for over 60% of therapies/medical care and over 40% of specific educational support, and 25% report difficulties in accessing services. The family income is affected by resignation (35%) or reduced working hours (46%). Stigma is associated with possi ble discrimination and feelings of helplessness. The main priorities mentioned for a better quality of life are support for inclusive schooling, better adjustment at home, and improved socialization. CONCLUSIONS: This survey provides relevant information about the needs, barriers, and challenges of AS people in Chile and highlights the difficulties in accessing health services and the severe impact on family income. Feelings of stigma, discrimination, and helplessness are reported. Collaborative strategies are needed to improve the quality and access to services and to reduce the economic and mental health burden on the family.
Subject(s)
Autistic Disorder , Caregivers , Caregivers/psychology , Chile , Female , Humans , Male , Personal Satisfaction , Quality of LifeABSTRACT
INTRODUCTION: 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. OBJECTIVE: To learn about the demographic and clinical characteristics, caregiver's first concerns, and age of diagnosis of ASD individuals. PATIENTS AND METHOD: 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. RESULTS: 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. CONCLUSIONS: 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.