Awareness and perception of medical genetic services among Malaysian parents of autism spectrum disorders children: the lessons to be learned

Abstract

Purpose

Autism spectrum disorder (ASD) is a group of complex neurodevelopmental disorders with uncertain etiology. Evidence shows that genetic testing can explain about 20% of cases. This study aims to assess the level of awareness and perception of medical genetic services among Malaysian parents with ASD children.

Design/methodology/approach

A cross-sectional survey using an interviewer-administered questionnaire was done among 111 parents of children with ASD from August 2017 to September 2019 in two clinics in Malaysia.

Findings

A majority of children with ASD (80.20%) were male and diagnosed at the age of 3–4 years old (47.80%). When the autistic child was born, most mothers and fathers were aged 26–30 (40.50%) and 31–35 years old (42.30%), respectively. Another child with ASD in nuclear and extended families was reported for 11.70% and 13.50%, respectively. Only 24.30% have seen a professional genetic consultant, and 19.8% have done genetic testing for affected children. The mean score of awareness of genetic services for ASD was 2.48 ± 3.30. Having medical insurance and another child with ASD in the nuclear family was significantly associated with a higher level of awareness (p = 0.01 and p < 0.001, respectively). Most of the participants have a positive perception of these services.

Originality/value

Regardless of demographic factors, participants have poor awareness of genetic services for ASD, likely because the primary physician did not recommend it upon diagnosis. Increasing health-care providers’ knowledge about the current potential of genetic testing for ASD and educational campaigns for the public are critical components of using available genetic tests to improve ASD management.

Citation

Amini, F., Yee, K.W., Soh, S.C., Alhadeethi, A., Amini, R. and Ng, E.S.C. (2022), "Awareness and perception of medical genetic services among Malaysian parents of autism spectrum disorders children: the lessons to be learned", Advances in Autism, Vol. 8 No. 1, pp. 27-38. https://doi.org/10.1108/AIA-08-2020-0047