Human bodies, as they relate to each other in everyday space and time, are required to behave in culturally acceptable ways. Connell’s (1995) work on hegemonic masculinity has demonstrated this significance for men, and feminist /disability studies has theorised the governance of female/ disabled bodies. In this article I draw on these conceptual tools, alongside intersectional feminism, in an analysis of the lived experiences of fathers who have autistic children, using examples from an ongoing doctoral research project.
Embodied accounts of the relationships between fathers and autistic children are rare. In this article, I dispute the difficulties fathers are presumed to have with the abstract concept of autism. I suggest that it is the problematization of men’s bodies in everyday interaction with gendered/disabled bodies, as they are situated together in spaces and places that creates difficulties.
The stories here were gathered from nine fathers with autistic children, purposely sampled because the ideals of ‘new fatherhood’ and hegemonic masculinity are antithetic, and sometimes problematic for them. Most are single fathers, are the main carer in their household, and all have full or significant parental responsibility for at least one autistic child. Only one father was employed at the time of conducting this research.
Stanley and Wise foreground that “using feeling and experience as the basis for explicating and the everyday ought to be the guiding principle for feminist research” (1993; p.175.) I worked in collaboration with fathers, drawing also on Black feminist theory in recognising how the ‘other’ position occupied by these men may enable aspects of experience previously unaddressed to emerge, with the aim of producing anti – patriarchal knowledge.
Gender essentialism in research
In comparison with the focus on mothers, there exists a gap in research with fathers who have autistic children. Much existing work is underpinned by gender essentialism and seeks to establish differences in male and female parenting on biological grounds. For example, it has been suggested that men have “an inability to cope effectively” with raising disabled children (Darling, Senatore and Strachan 2012; p.275.)
Shuttleworth, Wedgwood and Wilson (2012), suggest that aspects of hegemonic masculinity conflict with the feminised vulnerability that some ideologies of disability invoke, and so there exists an incongruence between the two. Although I reject essentialised ideas about both gender and disabled people, their bodies remain significant. The ways in which disabled bodies are frequently segregated and hidden from view, and the ‘natural’ positioning of women’s bodies in juxtaposition to disabled bodies has created a split which legitimises sexism, disablism and the unequal division of care. Whilst this division may be considered broadly advantageous to some men, for example, in excusing them from responsibility for disabled children, for others, it can impose limits on their parenting and relationships with their children, which, in turn, restricts the agency autistic children exercise over their personal relationships and day to day lives.
Fathers are subjectively positioned and evaluated against hegemonic norms. Most research with fathers of autistic children has generally reflected the experiences of middle class, employed, married men. Whilst research suggests middle class men are more likely to be viewed as progressive ‘new’ fathers, they are less likely to provide hands on childcare than poor or working class men. Meanwhile, the demonization of unemployed and unmarried fathers, and the association of inferior parenting with contested conditions such as ADHD and autism continues (Heeney, 2015). Paternal status as it overlaps with the age and the gender identity of autistic children is also deeply significant, points I will return to later. An Intersectional approach allows a more complex picture of both fathers and autistic people to emerge as they interact across place and time.
Bodies, spaces and places
More recent scholarship has sought to undo the binaries of masculinity and femininity. However, ‘bodies are not abstractions’ and the gendered/ disabled body remains a significant site of meaning and value (Davis, 1997, p. 15.) Feminist /disability studies has theorised on the ‘othering’ of female/ disabled bodies and how this affects their place in the social order.
However, a further significant point is the intersection of place with disability and how this overlaps with the gendering of space. The consequences of this for the relationship between fathers and autistic children specifically remains under theorised. Nevertheless, the ‘othering’ of fathers in both public and private contexts legitimates the surveillance of autistic and paternal bodies as they relate to each other.
I use these theoretical ideas to show how an analysis of the embodied relationships between fathers and autistic children must reflect how parenting is influenced by specific cultural values, which differ across time and place. In doing so, we can recognise that the ‘othering’ of men perpetuates everyday sexism and disablism, to undermine the agency of autistic children and position their parents in specific ways.
The men who participated in this research expressed both a desire and a requirement to be active and engaged fathers. Their personal situations enabled (or necessitated) engagement in practices such as children’s personal care, and brought them into social situations, which other fathers may not have experienced. However, most fathers reported stares and unsolicited comments from members of the public, frequently grounded in discriminatory assumptions about autistic people, men’s incompetency and toxicity and female expertise. One father recalled a visit to a café with his daughter and a friend, during which a stranger interrupted their privacy, offering her ‘help’ and claiming her own daughter to be ‘one of those.’ The same father also recounted an occasion when he guided his daughter away from a motorbike and was later stopped by the police. A member of the public had interpreted this as an attempted child abduction.
The dichotomy often drawn between public and private lives is evident in the lack of research on fathers’ participation in intimate caring practices such as bathing and dressing. In interviews men were unlikely to discuss these topics unless the subject was raised, which I interpreted as a fear of being considered deviant. Therefore, the presence of fathers alongside teenage female autistic bodies in locations such as public toilets, unsurprisingly, invited suspicion. Fathers reported feeling watched and this governance, coupled with a lack of appropriate facilities, restricted social opportunities to places where they knew they would be welcomed with their children.
Concerns about the vulnerability of disabled bodies intersect with conventions about gender, context and age in the family home also. A fathers’ presence in bathrooms and bedrooms, and involvement in practices such as co- sleeping with children, or helping them to shower provoked strong reactions from others. Fathers reported comments from family members who felt that their participation in such tasks was inappropriate or even perverse. Given the lack of stable and valid identities available to fathers of disabled children, distancing themselves from ideas about male toxicity was one of the few tactics available to these particular fathers. Therefore, some of the participants suggested that paid female carers were better placed to carry out such activities, whilst others framed their adolescent sons and daughters as perpetually innocent and childlike.
The distortion of the attitudes and capabilities of men in relation to the fathering of autistic children allows the interlocking oppressions of disablism and gender discrimination to remain naturalised. A shift in research paradigms to an intersectional one thus enables the systems which create inequalities in parenting and in the lives of autistic children to be scrutinised and challenged.
Connell, R.W. (1995) Masculinities Cambridge: Polity Press
Darling, C.A., Senatore, N., and Strachan, J. (2012) “Fathers of Children with Disabilities: Stress and Life Satisfaction”, Stress and Health, 28 pp. 269-278
Davis, K. (1997) “Embodying Theory: Beyond Modernist and Postmodernist Readings of the Body”, in Davis, K. (eds.) Embodied Practices Feminist Perspectives on the Body. London: Sage pp. 1-26
Shuttleworth, R., Wedgwood, N., Wilson, N.J. (2012) “The Dilemma of Disabled Masculinity”, Men and Masculinities, 15 (2) pp. 174-194
Stanley, L. and Wise, S. (1993) Breaking Out Again Feminist Ontology and Epistemology. London: Routledge
Joanne Heeney has an MA in Social Work, and is currently teaching at Liverpool Hope University, in the Department of Social Work, Care and Justice. She is a doctoral candidate at the University of York, Centre for Women’s Studies- supervised by Professor Victoria Robinson. Her research uses participant- generated visual ethnographic methods and narrative approaches and is underpinned by feminist disability theory, intersectional feminist theory and contemporary masculinities/ gender theory. See Heeney, J. (2015) Disability welfare reform and the chav threat: a reflection on social class and ‘contested disabilities’, Disability & Society, 30(4) pp.1-4.