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The Journey from Diagnosis to Services for Parents of Children with Autism Spectrum Disorder in Saudi Arabia

  • Author(s): Alnemary, Fahad
  • Advisor(s): Kasari, Connie
  • Weinberg, Lois
  • et al.
Abstract

Awareness of autism spectrum disorder (ASD) is relatively new in Saudi Arabia and systematic information about existing services is lacking. A convenience sample of 293 parents of children with ASD completed an online survey about their experiences and opinions attaining the ASD diagnosis for their children as well as the use of early intervention services in Saudi Arabia. The results revealed that the median age of the child when parents first noted atypicalities was 2.0 years. The median of the delays that parents experienced before they sought professionals help and to attain the diagnosis for their child were 0.3 years and 0.5 years, respectively. Just over one of third of parents were satisfied with the overall diagnostic process. Satisfaction was linked with higher perceived collaboration with professionals, higher perceived helpfulness of received information, higher perceived helpfulness of post-diagnosis support, lower household income, and shorter delay to attaining the diagnosis for those who live in a major city. The median age of treatment initiation was 3.8 years. More than 16% of children received no early intervention (ASD interventions prior school age) and more than a half of those who accessed such services received 3 to 6 hours per week. Earlier age of treatment initiation was associated with earlier age of diagnosis, earlier age when parents first sought professionals help, lower severity of child ASD symptoms, residing in a major city, and younger child’s age. Higher number of early intervention hours received per week was only associated to higher household income, rather than with child characteristics. Findings provide a valuable picture of an important group of families affected by ASD in Saudi Arabia, pointing the need to increasing ASD awareness and mandating early identification and intervention services in Saudi Arabia. National efforts for conducting research are needed to better understand and manage the access and use of diagnostic and therapeutic ASD services.

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