Early Efforts to Understand Autism Spectrum Disorders in the West Bank
As a Ph.D. student at the University of North Carolina at Chapel Hill (UNC), my research focuses on individuals with developmental disabilities and their families. While I have had the privilege of learning from preeminent scholars in the field of autism spectrum disorders (ASDs), the most valuable aspect of my education has been direct encounters with individuals with ASDs and their families in the United States and abroad.
It has been impossible for me to ignore the wide variations in the availability and quality of services in low-income countries as compared to the United States. The struggles many countries across the world face with widespread poverty, disability-related stigma and discrimination, lack of education, poor social services, and wars exacerbate the challenges to serve individuals with ASDs appropriately.
Territorial disputes and violence in the West Bank are frequently a topic on American and international news segments, yet little to no attention is given to children with special needs and their families in the region. I maintained connections to some disability-related organizations in the Middle East following my service in Peace Corps – Jordan. I learned of a small, but dedicated group of professionals and family members in the West Bank focused on ASDs. The mission of the Palestinian National Team for Autism, led by Dr. Allam Jarrar and Mr. George Rantisi, is to educate the general population and professional groups in the West Bank on ASDs and advocate for improved screening, assessment, and intervention for individuals with the disorders.
In the summer of 2010, I visited multiple organizations in the West Bank and Jerusalem that serve children with developmental delays. With the generous support of UNC’s Center for Global Initiatives and the Anne-Linda Furstenberg Award for Qualitative Research, I collaborated with the National Team to conduct a study in the West Bank investigating barriers to autism-related care. Due to the difficulty accessing Israeli settlements, I focused only on recruiting Palestinian Arab families in the West Bank. Services for children with special needs in the West Bank are almost entirely supported by private and not-for-profit organizations. I initially began by interviewing parents who received services from the local organizations I visited. These organizations did not solely serve children with ASDs, nor did they have the capacity to provide highly specialized services to the children they do serve. Furthermore, many children with ASDs are not accepted into the local public schools. These barriers, along with a lack of resources to finance care in private institutions and the distance between villages and available services, led many parents to keep their children at home. Thus, I expanded my study to also interview parents in their homes. The interviews provided me with an important lens into the lives of children with ASDs and their families in the West Bank.
Overall, whether children were at home or served by organizations, families in the West Bank faced an incredible number of difficulties in caring for their children with ASDs. Diagnostics were a particular area of concern. Parents reported they did not receive a diagnosis of an ASD until well into middle or late childhood, or received conflicting diagnoses from different professionals. Pediatricians and other medical professionals seemed, as a whole, to be untrained in proper diagnostic procedures for ASDs.
Transportation to available services was difficult, but the overarching issue reported was the dearth of organizations willing to serve this population at all. Public and some private schools commonly denied admission to children with intellectual and developmental disabilities, citing an inability to provide specialized services to meet the children’s educational needs. Due in part to the lack of government investment in the social sector, private and not-for-profit organizations providing services to this population are under tremendous strain to meet demand. To my knowledge, there was not one organization in the West Bank specializing in autism-related services.
Within organizations that serve individuals with special needs, professionals trained specifically in ASDs and other related disabilities oftentimes were not available. As a result, the parents I interviewed experienced high levels of emotional distress, social exclusion, and financial hardship. Mothers in particular reported they were often blamed for their child’s disability, and thus often suffered shame and distress.
Lastly, it was clear that the children with ASDs I met suffered immensely from the lack of appropriate intervention, including nearly a complete absence of functional communication skills. Many of the children and young adults I met lacked basic self-help skills, such as toileting and feeding. Additionally, many of the children displayed extreme self-injurious and/or destructive behaviors.
Despite the clear challenges I noted during my visit, the West Bank has a number of well-respected universities capable of training a workforce specialized in ASDs. Furthermore, not- for-profit organizations and community-based rehabilitation have a long history of success in the West Bank, and can be an avenue to improve screening, assessment, intervention, and professional collaborations. These networks are an opportunity to create local and international connections to support capacity building in the region.
My study is only one small step in beginning to understand how individuals with ASDs in the West Bank are identified, if at all, and provided with services. I am currently compiling my findings into a manuscript for journal publication. Dr. Jarrar and Mr. Rantisi, along with the National Team for Autism, continue to advocate for individuals with ASDs and their families through seminars and educational campaigns. It is our hope that these endeavors will support the development of appropriate and evidence-based services for children and adults with ASDs and their families in the West Bank.
Sarah Dababnah, MPH, MSW
Doctoral Candidate, University of North Carolina at Chapel Hill (USA)
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.