Dataset of: Patterns of Needs among Iraqi Families Caring for Children with Autism Spectrum Disorder: A Cross-sectional Study

Autism is one of the most common neurodevelopmental conditions worldwide, impacting roughly 1 in 36 children, as per the latest estimates from the Centers for Disease Control and Prevention (CDC). Autism is associated with lifelong challenges, leading to significant social, educational, and psychological impacts for both the children and their families. Yet, In Iraq, there exists a critical lack of research on this condition to the extent that no official estimate of its prevalence has been reported. This gap severely hinders the ability to provide adequate healthcare and support systems for these children and their families.

To address this gap, the International Branch of Tehran University for Medical Sciences and Al-Subtain Academy for Autism and Neurodevelopmental Disorders have conducted nine studies as a part of a research collaboration titled “Epidemiological, Clinical, and Psychosocial Aspects of Iraqi Children with Autism”.

As a part of this collaboration, we investigated the needs of Iraqi families caring for autistic children. Based on our findings, most parents require assistance in finding information, particularly regarding current or future services for their children. Many parents also needed help in finding reading material about and talking to families with similar children, highlighting the necessity of combating social isolation and providing social support to these families. Across the childcare domain of family needs, respite care was the most requested. We believe that our results offer a significant contribution, as they can be used to make better use of the very limited financial and professional resources that are available to these families.