Fathers of children with autism: claiming for a change in the visual representation of fatherhood and masculinity

[1]

Introduction: fathers and the media

A growing field of critical studies about fatherhood and masculinity[2] has recently shown how nowadays – at least in the so-called Western countries – fathers are no longer mere breadwinners and outdoor adventurers but supportive caregivers too. Despite the perception of masculinity and fatherhood is gradually changing, this cultural shift is not yet mirrored enough across the wider social and media culture we consume. How the media portrays fathers and masculinity and how does this reinforce stereotypes? In TV shows and movies, fathers are often two-dimensional. They are clumsy, funny dads, making jokes and silly faces, acting stupid, being awkward or on the contrary strong adventurous alpha-fathers. These descriptions underestimate the importance of fatherhood in general and reinforce larger stereotypes about uninvolved or incompetent fathers. Also, it not common to see disabled, non-white, or non-heterosexual fathers in the media. This representation of fatherhood is really detrimental in the long term, as it negatively affects the public opinion and those fathers who lack positive fathering role models. It also shows a poor recognition about how many fathers, unlike previous generations, are nowadays trying to be more involved in nurturing, loving, supporting and raising their children.

Advocating for fatherhood: long-term caring practices as a form of self-making

Drawing from my fieldwork in Portugal (2014-2016) with parents of children diagnosed with Autism Spectrum Disorders (from now on ASDs) who belong to the national advocacy movement, in this article, I explore four case studies of fathers and their care commitment with their child as an example of a new understanding of fatherhood, care and masculinity. My purpose is to show how fathers’ claim about their role as caregivers and call for its recognition interrogates the gendered division of care labour in both its dimensions: as bodily and emotional practices and as a socially expected parental task. Further, by exploring what it means to be a father of a child with autism, I address fathers’ narratives and practices of care labour as a form of self-making strategy that capitalize fathers’ desire to be recognized as emotionally, bodily, socially and politically involved in the construction of a new cultural and visual representation of fathers and of their caring experiences[3], an issue that has important consequences for them as individuals but also for the broader society.

Before presenting my case-studies, it’s important to underline how children with disabilities like ASDs often need long-term care and more family support than non-disabled children. Once reaching adulthood they may still need to be taken in care, so that care labour represents for their parents a compound of life-long and daily tasks, which involves the most intimate space of their selves, the body. Because of children’s lifelong challenges and needs, “kinship, caretaking, and the life course are reconfigured[4]”. This means that, as their children grow up, parents are always reinventing their ideas and practices of parenthood and care labour, which I understand as a manifold of “hands-on practices, activities and emotional thinking, commitment and responsibilities[5]”.

While the provision of love and “interdependency” of human beings are two conditions of all human societies[6], care is always framed by a “gendered order of caring”[7], which underlines the influences of gender in relation to the experience, social organisation and political understanding of care. As a gendered practice, care labour should be interrogated, as besides overburdening women and devaluing their work as carers, it has also a role in unrecognizing fathers and silencing their presence, contributing to a trivialization of both fathers and mothers’ personal choices as caregivers. At this regard, a growing field of critical studies has addressed the gender bias of care labour by focusing on fathers’ perspective on parenting, care work and involvement in their children’s lives[8].

By collecting fathers’ considerations about what it means to be a caring father, about what they are doing as caregivers and in which ways they engage with their children, I acknowledge the necessity to consider fathers’ long-term care commitment as a strategy of self-making as capable and competent bodies and subjects. Fathers’ experience as caregivers and their demand for the recognition of their care abilities has indeed critical consequences not only for their own subjectivities and self-confidence but also for the broader society. In the following paragraph, I will now briefly present four case-studies of fathers met during my fieldwork.

Fathers breaking the silence

Since several autism advocacy groups led by parents are Internet-based and hosted by social media platforms like Facebook, a large part of my ethnography on parental autism advocacy has been online. In particular, most of my virtual ethnography was “located inside” these online communities, engaging with parents that regularly share their experiences, post links, and articles and comment on other parents’ posts.

Diogo, a 42-year-old Navy veteran, is the administrator of the Os Amantes de Saturno – the most important Facebook-based group of parents of children with autism in Portugal – and one of its most active users. After a car hit him while he was helping another driver on the highway, he started working in the Navy administration department. Diogo has a 12-year-old son with autism, Luis, and considers himself a single parent, despite agreeing with his ex-wife on a joint custody of their son. Almost on a daily basis, he often shares photos on Facebook of himself and his child playing together but especially pictures of himself caring for Luis, like give him a bath, helping him dressing or brushing the teeth, reading a book together. He once shared a story entitled “A mother – autism on the other side of the door” originally published in Poder dos Pais (Parents’ power) – a Portuguese-speaking blog working from 2013 to 2016. The story tells about a typical day of a mother – fictionally named Márcia – who, while waiting for her child on the other side of the therapist’s door, starts thinking about the uncertain future of her son, her concerns and daily struggles, her daily commitment to her child’s care. The story ends with the sentence “You are Márcia, I’m Márcia”, as asking readers to identify with Marcia’s struggles and thoughts. Diogo wrote later in a comment “Does anyone feels like Márcia here in our group? I think this name is neither female nor male because I also see myself as Márcia!”. While some of his online friends on Facebook, especially mothers, agreed on the crucial function of fathers’ as caregivers and criticize society’s underestimation of their role, the majority of them complained about fathers’ absence or marginal role in their children’s lives and describe Diogo as an “exceptional case”. Refusing this label, Diogo pointed out how, as an advocate father, by sharing his care practices and routine he want to give space to fathers’ voices, to support them and create opportunities for them to speak up about their abilities and involvement as caregivers: “fathers don’t run away, we will always be there, even old and tired we will have the strength to take care of them [children]”. He is committed to raise awareness about fathers’ involvement in a child’s growth and development and to change the idea of fathers’ socially expected role or abilities within society at large: “Society still sees the father as a marginal figure, as the one who merely provides financial support or the guy who has got to pick up the kid from a swimming lesson. This has to change. I am a committed father, so are a lot of my friends who take the responsibility of their children’s educational and care needs”.

Ivo is the father of a ten-year-old boy with autism, Alex and of an older child diagnosed with dyslexia and attention deficit disorder. When we first met in 2017, he was a doctoral student in Public Policy and conducting several national and international studies and projects in the disability field, while working as a sociologist at the Strategic and Planning Cabinet of the Employment and Social Security department of the Ministry of Solidarity, Employment and Social Security. A few months later he was promoted Head of the Cabinet at the Secretary of State for the Inclusion of People with Disabilities. Since our first conversation, Ivo was critical toward what he defines a “violent exposition” of mothers as caregivers[9], that causes them to feel the unique responsible for their children’s results:

“Moms of Autism! I know that in many cases mothers are the primary caregivers and this is sadly true when a family has a disabled child…but it’s also a visibility issue, there are a lot of husbands and partners beyond these mothers, they are not alone…it seems like society is just obsessed with showing how mothers fight and care for their children…okay! but the other side of the story is that because of this, mothers get the idea that everything happening to their child is their fault…this feeling of guilt! Fathers too face this feeling and need to be heard…Me too, I’m doing everything I can to care about my son”

Ivo shares with his wife the same responsibilities as a primary caregiver

“I give bath to my son, it’s me who knows about his medical prescriptions, I report all his improvements on a diary to discuss later with his pediatrician, I massage him when he is stressed, I feed him and it’s me who cleans up all the mess, who keeps him still when he has his crises”

Ivo also becomes more emotionally engaged, for instance he educates himself to express his caring abilities in a more visible way. According to Ranson[10], fathers’ “experience of the bodily dimension of caring” is a crucial factor for reaching a public acknowledgement of their care abilities. In a way, their body and touch aspire to be viewed as kind and caring just as tradition has allowed this understanding of women’s bodies[11].

The next case elucidates, in my view, how fathers involved in care feel frustrated by the lack of support regarding intimacy in care labour. Emanuele feels uncomfortable when receiving praises for doing the same things that his ex-wife is expected to do for their daughter Isabella. When his friends get surprised for the amount of time he usually spends with his daughter, he thinks that his emotional bond with Isabella is underestimated: “Why this surprise? I’m not occasional babysitter”. Beyond this, Emanuele worries about other people’s judgment with regards to his physical proximity with his daughter, and he is anxious about his future abilities as a caregiver once his daughter will reach adulthood: “Will I feel okay in giving her a bath, helping her take the clothes off or wearing a bra? Will I be able to help her when she will have her period?”. These thoughts have a tremendous impact in Emanuele’s imaginary of his role as a long-term caregiver, of his ability to help her daughter when she will have her menstrual period or face the physical changes of her body during puberty.

The last vignette refers to a father complain about the lack of recognition of the emotional bond with his children. This is the case of Pedro, a single parent and primary caregiver, who was, at the time of our first meeting, starting his journey as a primary caregiver of his 14-year-old son, Francisco. The diagnosis of autism indeed worsened the relationship with his ex-wife and eventually represented one of the reasons for their divorce in 2001. At that time, Francisco’s mother kept living in Lisbon until 2009, when she eventually decided to move with her son to Mozambique – her home country – without Pedro’s approval. When I first met Pedro in 2013, his son Francisco was then living with his mother in Mozambique. During these years of long-distance relationship, Pedro tried to keep in contact with his son especially through Skype. He suffered a lot because of this separation and felt guilt for his absence as a father, especially when Francisco reached his early teens and started to struggle with his mood swings. After the divorce with his ex-wife, Pedro fought in court to have the full custody of Francisco, his son, who after 5 years in Mozambique living with his mother, came back to Lisbon in 2014:

“for many people, my fight for my son’s custody was kind of difficult to understand, people asked me ‘why’? They were surprised that I wanted to take care of my son, who is a disabled child, for the rest of my life”.

In his view, fathers’ commitment to fatherhood is undervalued within the broader society, so that “if a father asks for paternity leave people think that he just wants a time-off to be at home watching tv”.

In search of recognition: dismantling gendered subjectification

Care is generally understood as the work of looking after the physical, psychological, emotional and developmental needs of another person. It has been described as a polysemous concept insofar as it refers to the twofold meaning of “to care for” and “about” somebody, which captures the dialectic interlacing between care as a compound of activities and as a manifold of relationships, emotions, and affects. Care labour embodies different cultural, ethical and normative expectations about who should care for the one in need, and its duties may change over time depending on the different developmental stages of a person’s life, because of new understandings about human wellbeing, or because of the reorganization of national health care policies and medical services. Feminist scholarship from the second half of the 20th century[12] and more recent works about the “ethics of care”[13] have shown how caring labour has been historically engendered to women. At this regard, by studying the intersections of gender, race, class and the labour market, Mignon Duffy has argued how a gendered division of labour leads women to perform care labour as unpaid work, a condition that reinforces social subjugation and produces economic inequalities. The author has further explored how:

“feminists scholars have understood the gendered division of labor that assigns care of home and family to women to be one of the linchpins of systematic gender inequality (…) [and that]  women’s responsibility for unpaid work in the home disadvantages them in the labour market, both through periodic or long-term absences and through the burden of the second shift that wage-earning women still bear in the home”[14]

Also, the setting in which care is performed determines if this is understood as work or as a duty:

“Is it the quality of an activity that allows it to be labelled as “work,” or is it rather the institutional and social framework in which it is performed? Does “care work” refer to the fact that a certain type of activity is delegated to another person who is paid for this activity? In some contexts, or institutional settings, such as kindergartens or nursing homes, care is perceived as professional and monetarized work. In other contexts, the same activities, such as spending time with a child and caring for it, are interpreted as an expression of parental responsibility and not necessarily as work”[15]

Social studies about practices of caring for a child with autism spectrum disorder have essentially focused on mothers’ role and left out their focus fathers’ narratives about their experiences of care. In my fieldwork, despite being a minority, fathers represent crucial interlocutors for the understanding of their changing role in the family setting and their growing commitment in long-term care. As shown by the cases of Diogo and Emanuele, fathers are praised when providing care and attention to their children, a fact that implicitly reveals how their caring role remains a relatively uncommon and infrequent – and then surprising – situation. The character of “exceptionality” that is usually attributed to their practices shows how – as a society – we are still reinforcing gendered norms and expectations surrounding caring abilities. Furthermore, in most of the narratives about autism’s diagnostic moment, fathers are usually described as those who “accompany” or “escort” their partners to a doctor’s appointment. Ivo, on the contrary, considered himself as more knowledgeable about his son’s condition than his wife when reporting his relations with health professionals. While he often criticizes society for undervaluing fathers’ role, he is also aware of the pressure and impact of gendered expectations in care, but as he argues, “fathers deserve more respect and regard, since they bring a different perspective on how children stay at home, how they react to therapies, they can help understanding autism in a different way”.

Care as a creative place

Drawing from the narratives that fathers reported about their role as caregivers with autistic children, I identify some issues for further consideration.

The first issue relates to the gendered assumptions linked to care labour. Care labour, indeed, has been mainly construed as the “female private, and informal counterpart to productive public work”[16]. These ethnographic vignettes show how gender is inevitably incorporated in narratives and practices of care. The fathers I met address gender with different levels of critical awareness, for instance, when they confront the idea of what is expected or not from them as parents. In order to critically look at the gender-based division of care labour, we need to address how gender politically and economically operates on both institutional and interpersonal levels. On one hand, the prevalence of mothers as primary caregivers reflects the socio-political and economic exploitation of care work as a feminine duty. On the other hand, this labour division has also led to underestimating fathers’ abilities in care. A critical look at how gender is actually performed in care and family settings represents thus the opportunity of challenging expectations from society. Fathers demand for care to be understood as a relevant aspect of their role as fathers, questioning the assumption that they do not necessarily assume the responsibilities of care and contribute to the phenomenon of solo-mother caregivers in the household. Also, fathers’ emphasis on their emotional involvement in caring challenges this cultural cliché that for long has defined fathers’ responsibilities as largely directed toward cash rather than care[17]. Be they single parents – such as Pedro – divorced – as Emanuele – or in a sentimental relationship with a partner – such as Diogo and Ivo – fathers are quite aware that their duties as caregivers as well as the social perception of their role as fathers result from a gendered economy of normative expectations. With their practices, they are trying to be recognized as competent caregivers, taking into question the “exceptionality” of their involvement and participation in their child’s care. Spending time with their child and caring for her represents the expression of their parental responsibility and of their affective involvement. Fathers are struggling to be recognized as carers and feel that friends, relatives or even society are undervaluing their efforts as involved parents. This is why they interrogate gendered expectations of their care’s competence and skills. Fathers have confidence in their abilities, they feel closer with their children and experience new ways of attachment that comes with care knowledge and practice.

A second issue I would like to focus on concerns the role of kinship in care labour. As a social and emotional practice, care entails the capacity to shape and be shaped by social bonds and kinship relationships. Taking into account this element, it is crucial to acknowledge the mutual interdependence and intersection of care with kinship and the life-course. Kinship bonds inform about who and how is allowed to care and conversely care practices contribute to kinship “making and maintaining”[18], as well as providing care reinforces and re-materializes the relatedness of kinship. While becoming adults, we potentially experience this new role of caregiver, as we start to provide care and attention to our relatives in need, usually the older generation of our parents or grandparents. In this sense, care connects individuals within and across generations. When a child is diagnosed with a long-life disability or chronic disorder like autism, the transition from childhood to adulthood does not necessarily imply the ability to reciprocate and provide care to elderly parents. Autism as a chronic condition can thus interrupt cultural and social norms and expectations about changing caretaking roles in kinship along the life course. Because of the long-term dependency on parents in most of the daily activities, the carer role change, and the gradual attribution of care duties may not occur[19].

Since care arises from embodied interactions, kinship bonds and through proximity, the third issue I want to address is bodily proximity in care practices. Both care and kinship intersect and are tangled with social rules about physical proximity, which shapes, regulates (allows or avoids) our intimacy and practices of relatedness. In care practices, intimacy is a critical issue because care is a relational labour and thus it fabricates the possibilities of bodily relatedness. The work of Gillian Ranson[20] about fathers’ caregiving as embodied practice and lived experience has brought brilliant considerations to the topic of fatherhood and embodiment. Similarly, Andrea Doucet[21] has dedicated two-decade-long ethnographic research on fathering, caring and embodiment. According to the author, embodiment matters in fathering practices as fathers’ traditional representation usually “emphasized the masculine and physical quality of their caregiving – such as being outdoors, playing, and doing sports with their children – drawing “on a notion of masculine embodiment as strong, physical and muscle-bound”. This is why fathers usually describe the discomfort they often experience with the public displays of physical proximity in care as this could be misunderstood: 

“they feel that they have to initially watch their footing because there can be something disturbing about their presence as compared to mothers (…) the need to move cautiously because of ‘moral’ judgments, or suspicions about the social fit between male embodiment and other embodied subjects” [22]

In my fieldwork, Emanuele speaks up about the fear of feeling uneasy when thinking about his bodily proximity with his daughter once she will be a grown woman. This bodily proximity in care becomes problematic for all those parents whose children face adolescence, puberty changes, and sexuality. In a certain degree, fathers’ bodies are still subject to patriarchal view that understands masculinity as heterosexual, hard, rough and aggressive. For this reason, the masculine body proximity in everyday care practices could be perceived as dangerous:

“Paradoxically, while physical and emotional closeness is being encouraged at the social level, as part of healthy fatherhood, the innocence of publicly displayed relationships between men and children (fathers and offspring) remains a source of cultural apprehension”[23]

In order to dismantle this patriarchal vision of masculinity, fathers are expressing new ways of feeling and showing their bodies and presence in care labour, so that this “re-embodiment” – as defined by Connell – has an important bodily dimension:

“Baby work is very tactile, from getting the milk in, to wiping the shit up, to rocking a small person to sleep. To engage with this experience is to develop capacities of male bodies other than those developed in war, sport or industrial labour. It is also to experience other pleasures”[24]

Since there will always exist an “ontological inseparability of body-social linkages and care-giving relations between carers and the cared-for”, then we should call for a rethinking of the bodily quality of care by recognizing that this latter involves “fluctuating embodied entanglements – mind, muscle, flesh, breasts, lungs, hormones, hugs, physical play, arms, hands, face, neck, touching, holding on, letting go – and emotions of unbridled joy and unexpected grief”[25]. The concept “inter-embodiment” – developed by Lupton[26] – perfectly captures this relational dimension of embodiment and the intertwined quality of bodies’ relationships in daily childcare work. Fathers also call for the recognition of the emotional content engendered in the caring practices they are engaged with. Being a “good father” entails indeed providing immaterial needs, such as guidance, understanding, time, dedication, love. At this regard, also fathers’ narratives are strongly relying on the rhetoric of unconditional love, which is more often attributed to mothers. Entangled in the affective bonds of kinship, care can be understood as a “labour of love”[27] that involves competencies, skills, knowledge, and precise routines.

Finally, I would like to bring attention to fathers’ narratives about their role as caregivers as a strategy of self-making that displays the emotional, bodily, social and political dimension of the caring experience. Fathers’ call for being recognized as loving and caring parents demonstrates the need to critically change the assumptions about fathers as “unable” to care or lacking “aptitude for” childcare. Fathers also rely on their affectivity and emotions as part of their fathering experiences in a world considered as feminine and mostly inhabited by mothers. With regard to care labour, fathers show a “caring moral orientation”, which is more often embodied and thus performed by and attributed to women. This focus on fathers’ care labour is particularly relevant, as care studies have mostly explored mother-child relationship as the main significant space where care and affective commitment to others are “naturally” intertwined. The “gendering of the welfare state” has been so focused on motherhood and care that even “feminist researchers did not see men, masculinities and fatherhood as part of the gendering project. Rather, men in mainstream welfare state research were viewed as gender-neutral citizens who happened to be men”[28]. With their narratives and practices, thus, fathers are reimaging new practices of being a father that mirrors their changing self-perceptions as caregivers and build a renovated self-confidence in their care abilities.

As I mentioned in the introduction, conventional gendered representations did not frequently portray men in parental roles nor media and visual culture are likely to engage with issues of fatherhood. The fathers I encountered during my research are not relating neither resonating with how masculinity is depicted in the media. The idea of the dad is changing, and this should be gradually reflected in visual culture. Although the archetypal figure of the breadwinner is questioned, the point at stake is how society is willing to create a new collection of visual culture showing the shift in perception around what it means to be a father. As consumers, indeed, we’re very influenced by visual culture, and fathers claim for being depicted in a more “authentic” way, a way that reflects their values. Given the nearly perpetual concern about a “boy crisis” or “masculinity crisis,” greater understanding of exactly what the problem is and what’s causing it would provide more effective solutions. We need to understand gender more broadly, including the ways it intersects with factors like ethnicity and social class. Of course, there are still many fathers that resist this cultural change because they don’t have a framework for how to perform their role in a different way and lack knowledge of a gendered system.

Conclusions

In my analysis, fathers tackle (confront) gendered representations and social expectations of parenthood both within the family and the public space, especially by means of social networks. For instance, they use Facebook groups as a space of connection and mutual understanding but also to advocate for the recognition of their skills as caregivers. Illustrations and pictures of loving and caring fathers are shared via social networks with the intent of resisting father’s stereotypical portrait as an absent father with no emotional connection with the child. An involved-and-caring-dad eventually comes out, fostering fathers’ demand that that their changing attitudes and self-perceptions are eventually reflected in the broader (visual) culture. By sharing their narratives and practices of care, fathers bring to light the changes that are taking place in both care and disability settings, showing how they got increasingly committed as disability rights activists, contributing for a changing the cultural and visual landscape about parenthood, disability and care.

Furthermore, I explored fathers’ assertions of their care abilities and emotional relationships with their children and eventually address their engagement in intensive care as forms of self-making. By focusing on the emotional and bodily dimension of their caring experience as the ground for their recognition as caregivers, my analysis foregrounds the idea of care as a bodily and political intersubjective practice. In this way, masculinity and fatherhood take the form of self-construction projects through the medium of the intensive investment on the child’s wellbeing. I understand fathers’ claims about their role as caregivers then as a way to interrogate the gendered division of care labour in both its dimensions: as bodily and affective practices and as a socially expected task. By addressing fathers long-term and intensive care as a form of self-making that challenges gendered conceptions of care, my purpose is to show how care labour – understood as a manifold of hands-on practices, emotional thinking, commitment and responsibilities – interrogate social expectations of parenting and masculinity, which have been a role in misrepresenting fathers’ abilities as caregivers. Fathers involved in intensive care aren’t super dads. There are not special. They’re doing the work women have done for decades. We then need images of fathers showing their vulnerability and their nurturing qualities as well, images that are often associated with maternity. We also need to articulate fatherhood visual representation with issue of race and social class in order to create a society more attentive to gender equality in parenting but also to the impact that economic and political conditions have on new perception of fatherhood, care and masculinity.


[1] Institute of Social Sciences, University of Lisbon, Portugal. Research “EXCEL. In pursuit of excellence” funded by the Portuguese Foundation for Science and Technology (PTDC/SOC-ANT/30572/2017)

[2] Cfr. Connell, R. W. Masculinities. 2nd ed. Berkeley, Los Angeles: University of California Press, 2005.; Doucet, Andrea. A ‘choreography of Becoming’: Fathering, Embodied Care, and New Materialisms. “Canadian Review of Sociology” 50, 3 (2013), pp. 284–305; Ranson, Gillian. Fathering, Masculinity and the Embodiment of Care. London: Palgrave Macmillan, 2015.

[3] Ranson, Fathering, cit.

[4] Rapp, Rayna and Faye Ginsburg. The Human Nature of Disability. “American Anthropologist”, 112, 4 (2010), p.515.

[5] Miller, Tina. Making Sense of Fatherhood: Gender, Caring and Work. Cambridge: Cambridge University Press, 2011.

[6] Rogers, Chrissie and Susie Weller. Critical Approaches to Care: Understanding Caring Relations, Identities and Cultures. edited by C. Rogers and S. Weller. New York: Routledge. 2012, p.4.

[7] Lynch, Kathleen and Maureen Lyons. The Gendered Order of Caring. In Where are We Now? New Feminist Perspectives on Women in Contemporary Ireland, edited by U. Barry. Dublin: New Island Press, 2008.

[8] Gray, Peter B. and Kermyt G. Anderson. Fatherhood: Evolution and Human Paternal Behavior. Cambridge: Harvard University Press, 2012; Hobson, Barbara. Making Men into Fathers. Men, Masculinities and the Social Politics of Fatherhood. Cambridge: Cambridge University Press, 2004; Pattnaik, Jyotsna. Father Involvement in Young Children’s Lives. A Global Analysis. Dordrecht: Springer, 2013; Ranson, Fathering, cit.; Wall, Karin, Sofia Aboim, and Sofia Marinho. Fatherhood, Family and Work in Men’s Lives: Negotiating New and Old Masculinities, “Recherches Sociologiques et Anthropologiques”, 2 (2007), pp. 105–22.

[9] The most part of the parents I encountered during my fieldwork were women. They represented the primary caregivers of children with autism and the more engaged figures in advocacy activities. This data results from the gendered role in care but also by the higher number of female-headed single-parent families I encountered. Among my 19 long-term interlocutors, 10 are single parents, one is widow while 9 are divorced. Only 1 of the divorced parents was a man, and only 2 (a man and a woman) remarried or have a new partner. As some studies revealed, there has been observed a higher rate of divorce among parents of children with developmental disabilities and ASD compared to parents of disabled children (cfr. Namkung, Eun Ha, Jieun Song, Jan S. Greenberg, Marsha R. Mailick, and Frank J. Floyd. The Relative Risk of Divorce in Parents of Children With Developmental Disabilities: Impacts of Lifelong Parenting. “American Journal on Intellectual and Developmental Disabilities”, 120, 6 (2015), pp. 514–26; Hartley, Sigan L. et al. The Relative Risk and Timing of Divorce in Families of Children with an Autism Spectrum Disorder. “Journal of Family Psychology”, 24, 4 (2010), pp. 449–57). This data, however, rarely speaks about the underestimated presence of single-fathers as primary caregivers of disabled children.

[10] Ranson. Fathering, cit.

[11] Hamington, Maurice. A Father’s Touch: Caring Embodiment and a Moral Revolution. pp 269–85 in Revealing Male Bodies, edited by Nancy Tuana, W. Cowling, M. Hamington, G. Johnson, and T. MacMullen. Bloomington: Indiana University Press, 2011.

[12] Among those authors, I mainly refer to Gilligan, Carol. In A Different Voice. Cambridge: Harvard University Press, 1982; Ruddick, Sara. Maternal Thinking: Toward a Politics of Peace. New York: Ballentine Books, 1989; Tronto, Joan. Moral Boundaries: A Political Argument for an Ethic of Care. New York: Routledge, 1994.

[13] Rogers and Weller, Critical Approaches to Care, cit.

[14] Duffy, Mignon. Reproducing Labor Inequalities: Challenges for Feminists Conceptualizing Care at the Intersections of Gender, Race, and Class. “Gender and Society” 19 (2005), pp. 66–82, cit. p.2. See also her more recent work, Making Care Count. A Century of Gender, Race, and Paid Care Work. New Brunswick, New Jersey, and London: Rutgers University Press (2011).

[15] Alber, Erdmute and Heike Drotbohm, Anthropological Perspectives on Care. Work, Kinship, and the Life-Course. New York: Palgrave Macmillan, ed. 2015, p.4.

[16] Alber and Drotbohm, Anthropological Perspectives on Care, cit. p.3

[17] Hobson, Making Men into Fathers, cit. pp. 2-4.

[18] Alber and Drotbohm, Anthropological Perspectives on Care, cit. p.2.

[19] Of course, autism as a spectrum of disorders includes a manifold of different symptoms and features from which arise a range of unique needs for every individual.

[20] Ranson. Fathering, cit.

[21] Doucet, Andrea. ‘Estrogen-Filled Worlds’: Fathers as Primary Caregivers and Embodiment. “The Sociological Review”, 54, 4 (2006), pp. 696–716; Doucet, A ‘choreography of Becoming’, cit.

[22] Doucet, ‘Estrogen-Filled Worlds’ cit. 711-712

[23] Gabb, Jacqui. “Embodying Risk: Managing Father-Child Intimacy and the Display of Nudity in Families.” Sociology 47, 4 (2012), pp. 639–654, cit. p. 646.

[24] Connell, R. W. Masculinities, cit. p. 233.

[25] Doucet, A ‘choreography of Becoming’, cit. p. 284 and p. 300.

[26] Lupton, Deborah. Infant Embodiment and Interembodiment: A Review of Sociocultural Perspectives “Childhood”, 20, 1 (2012), pp. 37–50.

[27] Read, R. Labour and Love: Competing Constructions of ‘Care’ in a Czech Nursing Home. “Critique of Anthropology”, 27, 2, (2007), pp. 203–22.

[28] Hobson, Making Men into Fathers, cit. p.8.

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    By: Maria Concetta Lo Bosco

    Maria Concetta Lo Bosco è attualmente Project Manager del progetto di ricerca The Colour of Labour (ERC – AdG 695573) presso l’Istituto di Scienze Sociali dell’Università di Lisbona. Collabora con il progetto di ricerca EXCEL. The pursuit of excellence. Biotechnologies of enhancement and body capital (PTDC / SOC-ANT / 30572/2017), analizzando l’uso di psicofarmaci come potenziatori cognitivi e l’uso di prodotti biotecnologici nelle pratiche di body-hacking. Ha esplorato le esperienze di cura dei genitori con i bambini con diagnosi di Disturbi dello spettro autistico e il movimento per la tutela dei diritti delle persone con disabilità in Portogallo (PhD Lisbona, 2018).

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