Autism in the context of humanitarian emergency: The lived experiences of Syrian refugee parents of children on the autism spectrum
Abstract
This study explored the support and service experiences of resettled Syrian refugee parents of autistic children in terms of their pre- and post-migration. These lived experiences were investigated with participants (n = 3) through semi-structured interviews using interpretive phenomenological analysis. This study identified the supports and services parents received, their experiences with those services, their overall experiences with resettlement having an autistic child(ren), the implications of culture in support/service provision, and their perceived areas of service need during and after their resettlement in Alberta, Canada. Parents all had unique experiences that were delineated through clustered emergent themes and subsequently organized into a superordinate conceptual structure. The results of the study are discussed in the context of theory and relevant literature to elucidate and make findings applicable. Practical implications and future directions are discussed.
Notes
Open access: No
Open-access – No
Location
Alberta
Key recommendations
- Provide more vocational (work and volunteering) opportunities for autistic children, reduce appointment wait times, and focus support on the whole family instead of only the child.
- Provide autistic children who had experienced war with initial language liaison support in school.
- Establish parental support groups for refugee parents of autistic children
- Provide parents with psychoeducational resources, behavioural strategies, and social support in a crisis-sensitive way
Key population
Syrian refugees
Key findings
- All parents felt that the Syrian crisis had disruptive impacts on their child, family, and/or resettlement experience. Given the nature of COVID-19, parents also experienced additional barriers to gaining support and services due to the global pandemic.
- Parents varied in how they viewed culture to be important and relevant to the supports and services offered to their children. This variability highlights the need to explore cultural sentiments on a per-family basis.
- Parents experienced negative treatment and stigma toward their autistic children prior to resettling in Alberta, which negatively impacted both parents and the children.
- Overall, parents felt happy, satisfied, and thankful for resettling in Canada and accessing supports and services for their autistic children.
- Parents experienced support and service gaps contributing to unmet needs for their children.
- There were several everyday barriers to daily living that impacted participants adjustment outcomes, including learning English, completing paperwork to access autism services, commuting, finding accommodation, and becoming familiar with society.
- Establishing social and having family networks eased resettlement difficulties and had positive impacts on the overall resettlement experiences for families.
Integration timeline
Gaps identified
There is a gap in research investigating support and service use among Syrian refugee parents of autistic children in Canada.
Community organizations
- The Immigration Education Society (formerly the Calgary Immigrant Education Society)
- IRCC
