Family Experience with Early Identification of Autism in a Low-Resource Community Based Setting

Background: Early identification and intervention for children with autism is acknowledged to be a global priority, including in low- and middle-income countries (Khan et al., 2012). Anecdotal evidence suggests that there are substantial delays between the onset of parental concerns and subsequent diagnosis. Nevertheless, there is little known about parents' experiences of primary care in prior to diagnosis and their ability to access appropriate services.

Objectives: The current study was conducted to improve the knowledge base of primary care experience with parents of children with autism in a low-resource setting.

Methods: Semi-structured interviews were conducted with a group of parents of children diagnosed with autism recruited through the Palestinian Happy Child Center in the Palestinian territories. The interviews explored the timing and nature of early concerns, help-seeking, navigation of services, and the nature of support received from the community.

Results: The experience of families of children with autism prior to diagnosis was variable. Some parents reported no concerns about their children early on and emerging concerns over development, whereas others had concerns very early on. Nevertheless, most families experienced delays and complications in obtaining confirmation of a diagnosis and/or in understating the nature of the condition. Access to appropriate services was also a challenge for most parents, particularly financial barriers, fit with the child’s needs, and variability in the extent to which services were evidence-based.  Most parents receiving community-based intervention programs combining support for the child as well as the family reported that their child’s progress often exceeded their expectations.

Conclusions: Our findings reinforce the need for supporting parents of children with autism who play the primary role in improving their child’s condition, especially in low-resource settings where specialized services are lacking.