Journeys of mothers of adolescents with autism in Bahrain and Saudi Arabia: issues of justice?

Daghustani, Wid Hussain (2017) Journeys of mothers of adolescents with autism in Bahrain and Saudi Arabia: issues of justice? PhD thesis, University of Glasgow.

Abstract

Autism, a lifelong developmental disability, can have a significant impact on parents, particularly mothers who are often the primary care takers of their children in countries in which understanding of and resources for young people with autism are limited. This study explores the lives of mothers of adolescent sons with autism in Bahrain and Saudi Arabia. I focus on the issues that arise in a strictly sex segregated society, Saudi Arabia, and ask how living in such a culture affects the capacity of mothers to support and care, and to be helped to support and care, for their sons. I consider the experiences of these mothers in contrast with those of mothers from Bahrain which, though still a traditional society, has a more progressive approach towards women who fully participate in society and have almost the same rights as men, at least in law. In a country like Saudi Arabia, mothers struggle with the complexities of autism in a society that often treats them as inferior simply because of their sex. In Bahrain, even though mothers struggle with autism and a lack of support, the social and political structures of the country are different. Bahraini mothers, for example, do not have to contend with male guardianship laws or a prohibition on driving, both of which, I argue here, extensively affect their capacity to care for their sons.
In this thesis, I apply Nussbaum’s Capability Approach to questions of social justice for mothers of adolescents with autism. The Capability Approach is an evaluative framework that assesses individuals’ well-being, exploring what a person can actually do and be when given opportunity freedoms. In a just society, according to Nussbaum (2011), every individual is entitled to dignity and respect and should be provided with appropriate threshold levels of functioning in ten central human capabilities which include bodily integrity; senses imagination, and thought; emotions, and affiliation. By engaging in conversations with 17 mothers, 10 in Saudi Arabia and seven in Bahrain, this study starts to tell the stories of these seventeen mothers. In their own words2, the mothers I interviewed share their journeys with autism, discuss available social support, both formal and informal, and refer to and sometimes explicitly describe the cultural norms and regulations they encounter.
To analyse the interview data, I use thematic analysis and Nussbaum’s Capability Approach to explore mothers’ experiences. While I acknowledge that this is a small-scale study and I make only limited claims to generalisability or representativeness, the results of
1 I discuss terminology in Chapter One but this term is taken from the UK National Autistic Society definition at http://www.autism.org.uk/about/what-is/asd.aspx
2 Translated from Arabic to English as explained in Chapter Four.
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my analysis indicate a significant lack of support, both informal from husbands, families and friends, and formal from hospitals and schools. Most mothers experienced difficulties dealing with autism, physically and/or emotionally. With respect to the Capability Approach, most Saudi mothers reported capability failure, largely because of the marginalisation of those with autism and gender discrimination. These capabilities are compromised because Saudi mothers live under laws which, I claim, promote inequality and injustice. With major gender inequality, mothers in Saudi, I argue, suffer greatly and their capabilities are jeopardised. By contrast, my data indicates that Bahraini mothers’ capability development is less inhibited by the social and political arrangements of their country than applies to women in Saudi Arabia. This study draws out the significant differences in the experiences of women in two countries that are geographically separated only by a bridge but whose norms and conventions are radically different.
I argue that in order to promote social justice for women, it is important to see the situation through their eyes and to research their experiences in ways that allow a deep understanding of their struggles in their societies. I conclude that it is vital to acknowledge and value the roles of mothers caring for their children with autism within their communities, and to develop and ultimately implement policies that allow their own capabilities and those of their children to flourish.

• Item Type: Thesis (PhD)
• Qualification Level: Doctoral
• Subjects: L Education > L Education (General)
• Colleges/Schools: College of Social Sciences > School of Education
• Supervisor's Name: Hedge, Professor Nicki
• Date of Award: 2017
• Depositing User: Mrs Wid Daghustani
• Unique ID: glathesis:2017-8578
• Copyright: Copyright of this thesis is held by the author.
• Date Deposited: 06 Nov 2017 16:06
• Last Modified: 16 Nov 2017 11:23
• URI: https://theses.gla.ac.uk/id/eprint/8578