The importance of studying autism in non-western countries has been emphasized in recent years (Grinker et al., 2012; WHO, 2008). A considerable number of epidemiological surveys already have been carried out (Elsabbagh et al., 2012). As in Western countries, many of these studies tried to identify children with ASD at an early age. Notwithstanding the apparent significance of the efforts to estimate the prevalence throughout the world and to detect ASD early in life, some question the utility and ethics of early diagnosis in areas with limited resources and services. Others question whether research efforts should focus on ASD only or should incorporate a wider range of developmental disorders.
This paper presents the results of a pilot project undertaken in cooperation with parents in the southern part of Morocco. The goal was to jointly determine an effective way to empower parents of children with developmental disorders, a group who often have no access to day care or school.
In cooperation with a parent organization in Ouarzazate (south Morocco) we explored the needs and questions of parents of children with developmental disorders. Additionally, we organized a three-week pilot summer program for a small group of children with developmental disorders, their parents and volunteers. During this period, we undertook several steps to explore parent needs by 1) exchanging knowledge about autism and developmental disorders and provided diagnostic evaluations; 2) worked out individual plans for the children in collaboration with parents and local volunteers; and 3) worked with children and parents in order to model interventions and educational strategies. During this period we trained local volunteers from the parent organization to monitor the individual plans and to support the parents. Two follow-up visits are planned.
Seven children with developmental disorders and their mothers took part in this pilot project. Four volunteers from the Netherlands (three child psychologists, one educational assistant) worked together with four Moroccan volunteers. In addition three information meetings were organized in collaboration with local health care workers for parents, teachers and stakeholders. We encountered both success and challenges. Some of our original goals did not match the needs and questions of the parents. For instance, fewer parents of children with autism were interested in participation than anticipated, while parents of children with other developmental disorders were very keen to take part. Also, parents of young children with were very reluctant to participate, while there was a strong request for support of parents with older children.
Despite the challenges, the pilot project was highly valued both by parents and volunteers from both countries. During the presentation, we will outline the benefits and the pitfalls of this pilot project. Lessons learned for this project and other parent intervention projects in underserved non-western regions will be discussed. Finally, we will discuss possible benefits of this project for the Moroccan immigrant population in the Netherlands.
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