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Sunday, June 16, 2024

Fathers of Children with Disabilities

 In The Politics of AutismI discuss the role of families.  Most of the literature on fatherhood and autism is about paternal age as a "risk factor."

Davies, Alison, Jonathan Rix, and Martin Robb. 2024. “Fathers’ Relationships With Their Disabled Children: A Literature Review”. Disability Studies Quarterly 43 (3).

Our review set out to find how fathers' relationships with their disabled children are represented within the existing literature. Specifically, we were looking for evidence of connections and recurring interactions between fathers and their children that are meaningful to the father. The review covers forty-five papers that include fathers' voices describing their experiences as fathers of disabled children. These studies do not focus on the father-child relationship as a primary concern. We found only two papers referring to the father-child relationship in their abstract or title (Boström and Broberg 2014; Potter 2016). The majority of papers foreground fathers' accounts of challenge, adversity and coping strategies. Few studies prioritise positive aspects of this relationship.

Our analysis identifies a more complex and nuanced picture of father-child relationships than the somewhat negative one emphasised in the majority of papers. Although fathers reveal vulnerability, fear and ambivalence, we find that fathers emphasise the positive aspects of their relationships. However, most research studies do not prioritise these more positive accounts. We identify five main themes: an evolving relationship; caregiving practices; relational aspects of caregiving; recognising and supporting their children's agency; and connectedness. Fathers engage with the practical and relational aspects of caring for their children, providing tender descriptions of attending to their children's physical and emotional needs as well as more ambivalent descriptions of the drudge of daily caregiving. Fathers demonstrate relational care by assuming a range of roles and responsibilities as supporter, team worker, teacher, researcher, advisor, advocate and caregiver. The reciprocal and responsive nature of the father-child relationship is apparent in fathers' descriptions of adapting, shifting expectations and priorities, commitment, solidarity and moments of connection. There is a sense of gratitude hidden in the literature, a recognition of learning from the child, about fathering and becoming a better father. Fathers emphasise the strengths of the child, valuing personal characteristics and attributes, embracing their children's difference and having hopes and expectations for the future. There are few studies providing a sense of everyday father-child interactions but those that do suggest fun, laughter and physical interaction.

The review highlights that fathers' relationships with their disabled children is an under-researched area. The main focus of existing studies is on the negative impact of having a disabled child. Understanding of the complexity and rewarding aspects of fathers' engagement is limited. Future research aimed at providing new insights into our understanding of fathers' relationships with their disabled children is warranted.