MAIN NEEDS AND CHALLENGES OF PARENTS OF CHILDREN WITH AUTISM SPECTRUM DISORDER
Journal
Prilozi (Makedonska akademija na naukite i umetnostite. Oddelenie za medicinski nauki)
Date Issued
2020
Author(s)
Pop-Jordanova Nada
Abstract
Autism spectrum disorder (ASD) comprises a group of complex lifelong neurodevelopmental disorders,
characterized with symptoms related to the difficulty of communication and interaction with other peo ple, as well as restricted interests and repetitive behaviors. These symptoms affects the person’s ability to
function properly in school, work, and other areas of life.
For better understanding the needs and challenges of families the survey developed by Autism Speaks
in collaboration with the National Coordinators for Autism from nine Balkan countries was established.
The aim of this research is to obtain an overview of some important data for children with some form of
autistic disorder.
The same questionnaire was used in two different periods of time (during 2015 and at the beginning of
2020) including samples of 60 and 140 parents respectively.
The questionnaire comprises 57 questions in the following four domains: demographic characteristics,
index child characteristics, service encounters and parent/caregiver perceptions. Results are compared
and discussed.
The survey results underscore that parents and families of children with ASD in our country carry a heavy
burden. They face significant financial difficulties and need improved services from the health, educational
and social sectors.
It was concluded that there is a critical need to strengthen national capacity in caring for children, young
people and adults with ASD and other neurodevelopmental disorders
characterized with symptoms related to the difficulty of communication and interaction with other peo ple, as well as restricted interests and repetitive behaviors. These symptoms affects the person’s ability to
function properly in school, work, and other areas of life.
For better understanding the needs and challenges of families the survey developed by Autism Speaks
in collaboration with the National Coordinators for Autism from nine Balkan countries was established.
The aim of this research is to obtain an overview of some important data for children with some form of
autistic disorder.
The same questionnaire was used in two different periods of time (during 2015 and at the beginning of
2020) including samples of 60 and 140 parents respectively.
The questionnaire comprises 57 questions in the following four domains: demographic characteristics,
index child characteristics, service encounters and parent/caregiver perceptions. Results are compared
and discussed.
The survey results underscore that parents and families of children with ASD in our country carry a heavy
burden. They face significant financial difficulties and need improved services from the health, educational
and social sectors.
It was concluded that there is a critical need to strengthen national capacity in caring for children, young
people and adults with ASD and other neurodevelopmental disorders