Experiences of Seeking for Assessment and Diagnosis of Autism Spectrum Disorder in Vietnam

Background:

Early identification and accurate diagnosis enables early intervention, which leads to improved quality of life of individuals with autism spectrum disorder (ASD). In Vietnam, especially in provinces, there is little understanding about when care-givers of young children have first concern about their children, where and when they seek for assessment services for their children, and how their children are assessed, what parents think about the quality of services. This online survey has been carrying out in order to provide data for programmers and policy makers in efforts to enhance services for the children with ASD.

Objectives:

• To describe the experiences of parents of children with ASD in seeking for assessment and diagnosis services for their children.
• To explore some factors that might influence to the early identification and seeking for assessment services of parents of children with ASD.
• To provide suggestions to improve early identification and assessment services

Methods:

An online survey has been carrying out nation-wide with parents of children who received diagnosis of ASD since early October, 2017 to end October, 2017 using surveymonkey platform (https://www.surveymonkey.com). This survey has been promoting mainly through social media: facebook, and through sending email to parents.

Results: Two weeks after launching the survey, 380 parents completed fully the questionnaires. Preliminary analysis indicated that parents began to be concerned about their children from 3 months of age at the earliest to latest time of 60 months. On average, parents in this study began to be concerned about their children at the age of 22.4 months. On average, parents waited 3.4 months from when they started to have concerns to when they sought out assessment and diagnosis. More than half of parents (51%), sought assessment at specialist department directly at tertiary hospital of pediatrics. One average, parents travelled 86 km to access assessment clinics for their children. Less than 10% of parents were introduced and referred for assessment services from health professionals. Nearly half (46%) children were assessed less than 30 minutes and nearly 90% respondent received conclusion of assessment and diagnosis during the day their children were assessed. Only 35% of respondents agreed that professionals spent enough time to assess their children. About one third agreed that professionals provided enough time to explain assessment results and information to them. 56% parents thought that assessor had good knowledge on autism. About 15% did not believed in the conclusion of diagnosis. We will continue to run the survey for two more week and carry out further analysis to compare between rural and urban respondents, as well as socio-economic groups.

Conclusions: There are some concerns about the quality of assessment and diagnosis services and lack of referrals within health system. Greater effort, including develop national guideline, is needed to improve the accessibility and quality of assessment and diagnosis for ASD.