Outside the margins: A Capabilities Approach to understanding mothers’ experiences accessing education services for their autistic adolescent sons in Saudi Arabia and Bahrain

The parenting experiences and needs of Asian primary caregivers of children with autism: A meta-synthesis

“…deafness; Al Kandari, 2008). A lack of awareness, fear, and stigma of a diagnosis also often delayed parents seeking help (An, Chan, & Kaukenova, 2018; Chao et al, 2018; Daghustani, 2017). Although parents in most studies attributed the cause of ASD to vaccinations, genetics, and environmental factors, many held superstitious beliefs such as the “evil eye,” “black magic,” and “Jinn possession,” which subsequently influenced the type of treatment sought.…”

“…We just couldn’t accept that” (Wang & Casillas, 2013, p. 600). A minority of parents mentioned feeling relieved and comforted with the knowledge as they could then seek the appropriate treatments for their children (Al Kandari, 2008; Daghustani, 2017).…”

“…In 24 studies, most Asian parents in both Asia and Western settings experienced social stigma against mental illnesses among their communities and often attributed it to a public lack of awareness and understanding of autism (An et al, 2018; Daghustani, 2017; Minhas et al, 2015; Ravindran & Myers, 2013). Although some parents acknowledged the growing awareness of autism in their communities due to media influences (Divan et al, 2012; Ilias et al, 2017; Vanen, 2017), the majority still faced discrimination, hostility, mistreatment, or even pity from the public: “I have to watch out for my child.…”

“…Most parents living in Asia, especially in rural areas, mentioned the need to travel to main cities or even overseas just to seek proper diagnoses and treatments due to a lack of local resources (An et al, 2018; Daghustani, 2017; Divan et al, 2012; Minhas et al, 2015; Ravindran, 2013). Furthermore, gender inequality, especially in the Middle East, was a huge help-seeking barrier for mothers: “My husband doesn’t allow me to speak with men, which is why I cannot call the teacher and ask him about my son” (Daghustani, 2017, p. 141). Other mothers were denied access to healthcare or education services because such procedures have to be done by men of the household, but their husbands were always busy or did not sense the urgency in doing so (Al Kandari, 2008; Daghustani, 2017; Minhas et al, 2015).…”

“…Furthermore, gender inequality, especially in the Middle East, was a huge help-seeking barrier for mothers: “My husband doesn’t allow me to speak with men, which is why I cannot call the teacher and ask him about my son” (Daghustani, 2017, p. 141). Other mothers were denied access to healthcare or education services because such procedures have to be done by men of the household, but their husbands were always busy or did not sense the urgency in doing so (Al Kandari, 2008; Daghustani, 2017; Minhas et al, 2015). While mothers living in Western countries did not fall victim to the aforementioned issues, they similarly encountered long waiting lists for diagnoses, interventions, or education (Bui, 2017; Tarian, 2015; Wang & Casillas, 2013).…”