СРАВНЕНИЕ НА НУЖДИТЕ НА БЪЛГАРСКИ СЕМЕЙСТВА НА ДЕЦА С РАЗСТРОЙСТВА ОТ АУТИСТИЧНИЯ СПЕКТЪР ПРЕЗ 2013 – 2015 И 2020 Г.
A COMPARISON OF FAMILY NEEDS ASSESSMENT OF BULGARIAN CHILDREN WITH AUTISM SPECTRUM DISORDER IN 2013-2015 AND 2020

Summary/Abstract: There are very limited data on the needs, challenges and priorities of families of children with autism in Bulgaria. Such data collected directly from parents would allow us to investigate how changes in policies, access to services and public awareness over time are reflected in the experiences of families. The aim of the present study is to compare diagnostic paths and access to services of families of children with autism in Bulgaria based on data collected through interviews and online surveys in 2013-2015 and in 2020. In 2013-2015, 147 parents participated, and 195 parents participated in 2020. A similar questionnaire was used at both time points developed for this specific purpose. In 2013-2015, 50% of participants expressed concerns for their child prior to their second birthday in comparison to 71% of parents in 2020. Nevertheless, the age of diagnosis for both time points was similar (~50% received a diagnosis by the age of 4 years). In 2013-2015, only 33% of children were diagnosed in their own town in comparison to 66% in 2020. There are differences in access to services with more difficulties experienced by families in 2013-2015. At that time, 38% did not have access to services, 16% were waitlisted, and 30% had financial difficulties in comparison to 5.5%, 8% and 10% in 2020, correspondingly. There are meaningful differences in diagnostic paths and service access across the two time points. We discuss the changes in public awareness and policies, which might be associated with these differences.

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