PURPOSE OF THE STUDY
Mapping available support services for young people with ASD and their families, assessing their greatest needs and examining the perception and attitudes of the parents/caregivers towards the existing support system.
METHODOLOGY
Parents/caregivers of adolescents and young adults with ASD – from 15 to 30 years of age were recruited from the database of Institute of Mental Health and surveyed using an adapted version of The Caregiver Needs Survey (SEAN).
MAIN CONCLUSIONS
- Only a minority of parents reported receiving education on their children’s needs.
- Parents pointed out lack of information and long waiting lists as the most important barriers in accessing services.
- The majority of parents reported socio-economic adversities – financial difficulties, quitting work or working part-time due to increased parenting demands.
- The majority of parents denied feeling concerned that other people would find about their child’s diagnosis or experiencing discrimination.
- Over 90% of parents/caregivers stated that good collaboration with services involved in care for children with ASD, as well as support at home, at school and in making friends are important.
- The greatest challenge was reported to be getting adequate healthcare for their children, followed by protection of child’s rights and getting adequate education.
- The majority of parents highly prioritize the development and enhancement of healthcare services, education, social services, as well as improving children’s and young people with autism’s rights.
RECOMMENDATIONS
Our data suggest that improving communication with services and information providers is of great importance, together with improving accessibility of the healthcare and educational system for persons with autism.
