Experiences of families seeking ASD diagnosis
Exploring the challenges parents and guardians face in accessing ASD diagnostic services
Autism spectrum disorder (ASD) encompasses a range of neurodevelopmental disorders characterised by ongoing difficulties in social interaction and communication, along with restricted or repetitive patterns of behaviour. The World Health Organization states an estimated 1 in 100 children have autism. Despite the rising prevalence of ASD worldwide, obtaining a diagnosis remains an issue for many families, with delays, stress and frustration a common part of the process.
For children to receive publicly funded services, a definitive ASD diagnosis is often required, with early identification and intervention giving the best chance of improving symptoms and providing support for development. Considering the numerous potential adverse impacts on children and their families, it is essential to gain a deeper understanding of the experiences parents and guardians face when trying to obtain ASD diagnostic services for their children.
To address the significant challenges this poses, a qualitative systematic review was conducted to explore the barriers and facilitators of parents and guardians when accessing ASD diagnostic services for their children, and to develop recommendations for overcoming the barriers to promote timely diagnosis and early intervention.
An accompanying editorial discussed the three synthesised findings from the systematic review, highlighting the multiple barriers that exist for parents and guardians accessing ASD diagnostic services, underscoring the need for future global research to better support this growing population and their families.
Resources
Waiting and the unknown: parental experiences accessing autism spectrum disorder diagnostic services for their children
Smith-Young, Joanne; Chafe, Roger
JBI Evidence Synthesis 23(1):p 4-5, January 2025. | DOI: 10.11124/JBIES-24-00512
Parents’ and guardians’ experiences of barriers and facilitators in accessing autism spectrum disorder diagnostic services for their children: a qualitative systematic review
Smith-Young, Joanne; Pike, April; Swab, Michelle; Chafe, Roger
JBI Evidence Synthesis 23(1):p 6-68, January 2025. | DOI: 10.11124/JBIES-23-00332