Parent-Reported Barriers to Autism Services in the West Bank

Background: Access to health and mental health services in the Palestinian Territories is generally poor. Furthermore, research has found parents raising children with Autism Spectrum Disorder (ASD) in the West Bank face high levels of discrimination, stress, and financial burden. However, little is known about families’ access to ASD-related services in the West Bank. The presentation summarizes a qualitative study undertaken in the West Bank. Palestinian Arab parents of children ages 18 and under with ASD were interviewed. The research questions were as follows: 1) What barriers do parents report in order to reach ASD-related care for their children? 2) How do parents describe the quality of available services?

Method: A community sample of 24 parents raising children with ASD was recruited from villages and refugee camps across the West Bank. A semi-structured interview guide was used to guide discussions on parents’ access to autism-related services and supports. Digital audio files of the interviews were transcribed, reviewed by two separate researchers, and then coded and analyzed using Atlas.ti. Coding and themes were developed using a grounded theory approach. In addition to interview transcripts, field notes and memos from each interview were used to expose themes and patterns from the data.

Results: Stigma related to having a child with special needs was a significant issue for some of the parents interviewed, and impeded their willingness initially to seek services. Furthermore, transportation and physical access to services was a challenge for many parents. However, the overarching theme was the lack of ASD-related services and professionals trained to support children with ASD and their families. Parents reported assessment, diagnostic and intervention services were inadequate, and children were often denied any access to public and private schools. Thus, many parents reported their children remained at home without access to any educational or therapeutic ASD-related services.

Implications: The study highlights the lack of services available to parents raising children with ASD in the West Bank. In addition to efforts to reduce stigma and improve physical access to services, researchers, policymakers and social work professionals should collaborate in order to improve screening, assessment, intervention, and professional training opportunities in the West Bank. Universities and not-for-profit organizations in the region are a potential source for workforce training and research support.