Abstract

Parents of autistic children report relatively high levels of parenting stress that includes experiencing stigma. Yet, research about stigma experienced by parents of autistic children is limited, and in particular, fathers' experiences are rarely documented. The purpose of this study is to illuminate courtesy stigma experiences of fathers of autistic children. We conducted a secondary analysis of narrative data from a subset of 16 fathers raising both autistic and non-autistic children. Fathers participated in in-depth interviews about successes and struggles in raising autistic children. Fathers experienced "felt stigma" in forms of censorship, isolation, guilt and defying stigma. Fathers navigate ableist stereotypes, which are interwoven with stereotypes of traditional masculinity. Fathers defy stigma but are also part of processes that perpetuate stigma. Further, understandings of the complexities of courtesy stigma are needed, particularly through studies that target fathers from diverse cultural, racial, family structural and socio-economic backgrounds.


Introduction 1

Stigma describes the situation of an individual who is disqualified from full social acceptance (Goffman, 1963). Stigma is socially constructed, meaning that personal characteristics are not inherently negative, but rather, ascribed as negative by society because characteristics do not meet "normalized" expectations (Frost, 2011; Goffman, 1963; Scambler & Hopkins, 1986). Stigma is part of longstanding oppressive arrangements maintained by those in positions of power to exclude particular groups, and ableist systems are key among these oppressive arrangements. Within ableist systems, "the nondisabled experience and point of view" is central and dominant (Linton, 2006, p. 161). The dominance of nondisabled experiences is evident in social and physical environments designed for those who are abled-bodied (McRuer, 2006) and able-minded (Chapman, 2013) and contributes to stigmatizing attitudes, behaviours and beliefs toward disabled people 2. Accordingly, disabled people are stereotyped as not measuring up to normative expectations (McConnell, Savage, Sobsey & Uditsky, 2015) and the primarily negative nature of disability stereotypes means having a disabled child is seen by society as a disadvantage (McConnell, Savage, Sobsey, & Uditsky, 2015).

To better understand how disadvantage can be experienced by parents of disabled children, we draw on the concept of courtesy stigma, or stigma by association, which was developed to describe someone with a "spoiled" social identity due to their interpersonal ties with someone with a stigmatized identity (Scambler, 2004). As such, parents, given their highly involved relationship with their disabled child, are susceptible to courtesy stigma (Corrigan & Rao, 2012). Courtesy stigma can manifest in multiple ways depending on how physically obvious a child's disability is and parents of children whose disabilities are "invisible" encounter public judgements that attribute their child's negative behaviours to their parenting (Corcoran, Berry, & Hill, 2015; Farrugia, 2009; Scambler, 2004; Scior, 2013). The increasingly diagnosed disability of autism — sometimes termed Autism Spectrum Disorder (ASD) — is often "invisible", and autism is the disability around which we develop the discussion of courtesy stigma in this paper.

Autism is widely understood as a life-long neurodevelopmental disorder that impacts an individual's ability to communicate and relate to others (Elsabbagh et al., 2012) and autistic children tend to experience varying degrees of behavioural and social difficulties. Parents of autistic children face distinct challenges in navigating health, education and social environments with and for their children (Lashewicz, Shipton, & Lien, 2017; Braunstein, Peniston, Perelman, & Cassano, 2013) and parent challenges include courtesy stigma (Farrugia, 2009; Gray, 1993; Scambler, 2004). Yet, courtesy stigma experiences of parents of autistic children have not been well documented and, moreover, research that has been targeted to understanding stigma experienced by parents of autistic children mainly reflects experiences of mothers. The purpose of this study is to contribute to understandings of courtesy stigma by illuminating courtesy stigma experienced by fathers of autistic children as evidenced in fathers' descriptions of their successes and struggles in raising autistic children. We situate this study as part of disability studies scholarship about families navigating ableist systems and stereotypes.

The need for fuller understandings of fathers' experiences of stigma

In accordance with traditional family ideals built on heteronormative assumptions that mothers are main caregivers and fathers are breadwinners, family and disability-centred research, and corresponding practices, have catered largely to mothers experiences and needs (Braunstein et al., 2013; Cheuk & Lashewicz, 2015; Fabiano, 2007; Gray, 2002). Sociocultural "codes" of masculinity continue to require that men exemplify self-reliance and resourcefulness (Coles, 2007; Connell, 1996; Connell & Messerschmidt, 2005) and masculinity ideals flow through ideals about fathering (Connell, 1996; Jack, 2014). Fathers of autistic children may experience amplified pressure as financial providers for their children's futures (Jack, 2014; Lashewicz, Shipton & Lien, 2017; Lien, Lashewicz, Mitchell & Boettcher, forthcoming). Correspondingly, traditional masculine characteristics such as being problem solvers, providers and protectors, can be assets in raising disabled children (Beaton, Nicholas, McNeil & Wenger, 2012; Lashewicz, Mitchell & Boettcher, forthcoming; Jack, 2014). At the same time, fathers of autistic children may be propelled by their child's autism-related needs towards relatively involved styles of parenting that includes considerable hands on caregiving (e.g. Beaton et al., 2012; Cheuk & Lashewicz, 2015, Potter, 2016).

Thus, fathers raising autistic children often balance between demands as financial providers and relatively involved caregivers; yet, fathers' experiences remain understudied (Braunstein et al., 2013; Cheuk & Lashewicz, 2015). Fabiano (2007) pointed out that compared to mothers, fathers of autistic children may be less inclined, or not invited, to participate in research. Whatever reasons might disincline the research inclusion of fathers' experiences, Braunstein and colleagues (2013) reported that a combined total of 404 studies of families raising an autistic child published between 2001 and 2010 represent perspectives of 47,076 mothers and only 8,714 fathers. A further 26,063 participants in these studies were indistinguishable as mothers or fathers. Additionally, of the 404 studies, a mere 1.5% targeted only fathers versus 21.5% which targeted only mothers. Braunstein et al. (2013) also pointed out that no discernible shift towards greater inclusion of fathers' experiences had occurred between 2001 and 2010.

At the same time, researchers who do target fathers' experiences raising autistic children report that fathers tend to score lower than mothers on measures of seeking and receiving parenting support (Braunstein et al., 2013; Jacoby & Austin, 2007). Further, compared to mothers of autistic children, fathers are more sensitive to stigma and less confident about managing their child's challenging behaviours (Braunstein et al., 2013; Kayfitz, Gragg, & Robert Orr, 2010; Sharpley, Bitsika, & Efremidis, 1997). Fathers of autistic children express frustration with how poorly autism is understood by the general public (Lashewicz, Shipton, & Lien, 2017) and stigma has been found to influence parents' of autistic children in terms of social interactions and their decisions to take their child out in public (Corcoran, Berry, & Hill, 2015; Scambler & Hopkins, 1986).

An emerging body of research about parents managing stigma related to having a child diagnosed with a developmental or medical condition that impacts the child's functioning has highlighted parents' strategic use of medical knowledge of their child's condition. Farrugia, using data drawn from 12 interviews with 16 parents of autistic children, pointed out how obtaining a child's diagnosis of autism equipped parents to provide a medical explanation for their child's difficult behaviour (2009, p. 1019). Given their autistic child's normal physical appearance, explaining their child's behaviour in medical terms provided a means through which parents countered being stigmatized as "bad parents of naughty children" (Farrugia, 2009, p. 1016).

Farrugia (2009) linked his findings to similar processes reported by Kelly (2005) and Rehm and Bradley (2005) who studied parents of children with a range of childhood disability diagnoses/developmental delays. Kelly (2005) reported that parents use medical knowledge of their child's diagnosis as part of "remaking" their parental identity in ways that disrupt taken-for-granted assumptions about child development. Similarly, parents in the study by Rehm and Bradley (2005) used their child's diagnosis strategically to describe having a good life yet one that was "not necessarily normal by usual standards" (2005, p. 817). Farrugia (2009) tied together his discussion with an endorsement of findings by Raspberry and Skinner (2007) from their study of parents of children with genetic conditions; in this study, parents of children with genetic conditions used their knowledge of genetic origins to "legitimate" their child's condition, and in this process, they were able to present their child as "different, yet still valuable."

Clearly, we have the beginnings of research evidence that parents who have disabled children, particularly children whose disabilities are invisible, must manage stigma as part of navigating ableist spaces and systems. Yet, much of what has been cast as evidence of parent experiences continues to pronouncedly reflect mothers' experiences. Even Kelly (2005) and Rehm and Bradley (2005), all of whom employed sustained engagement with participants using in-depth ethnographic methods to examine "parent" experiences, included quotes from only one or two fathers in their published reports. And in Farrugia's study (2009), mothers outnumber fathers by more than two to one (11:5), and only one of five father participants was interviewed without his wife present as co-interviewee.

Given that fathers of autistic children tend to have parenting experiences that are distinct from those of mothers and which may entail particular susceptibility to experiencing stigma, we delve into fathers' stigma experiences by conducting a secondary analysis of data collected as part of a broader project about fathers' successes and struggles in raising autistic children. We examine fathers' descriptions for evidence of courtesy stigma experiences and the implications courtesy stigma experiences entail for fathers and their families. Drawing on stigma theory articulated by Goffman (1963), we examine fathers' experiences with courtesy stigma and we use the conceptual distinction between dimensions of felt versus enacted components of courtesy stigma described by Scambler and Hopkins (1986). As such, enacted stigma entails experiencing episodes of discrimination, while felt stigma entails shame attributed to being associated with a stigmatized individual and the fear of experiencing enacted stigma (Jacoby & Austin, 2007).

Method

Study design

As a secondary analysis, this study of courtesy stigma did not entail data being collected for the purpose of understanding courtesy stigma experiences; rather, we analyzed a sub-sample of in-depth interview data collected for a broader project about understanding and resourcing fathers of autistic children. The broader project was developed in consultation with two community partner agencies with mandates of providing support and education for autistic children and their families. We took a narrative approach and used corresponding constant comparative traditions of qualitative research to collect and analyze fathers' stories of successes and struggles in raising autistic children. We have published findings consistent with our pre-determined goals of understanding fathers' successes and struggles (see Cheuk & Lashewicz, 2015; Lashewicz, Cheuk & Shave, 2015). As our data immersion unfurled, we were struck by the ways in which the topic of stigma was subtly and explicitly evident in fathers' descriptions of their activities, decisions and emotional experiences. While interview questions specific to stigma were not part of our broader project design, we argue that we collected evidence of fathers' experiences of stigma that warrant the separate analysis we present here.

Sample recruitment

Participants are fathers of autistic children recruited through a call for participants. The call for participants was distributed through the communication channels of agencies that provide services to families of autistic children in an urban centre in western Canada. To participate, fathers had to be raising at least one child diagnosed with autism aged 2-13 years; this age range was chosen as likely to encompass demands for parents, including obtaining diagnosis and initiating and sustaining supportive interventions (Braunstein et al., 2013). Fathers could be married, divorced, single or common law, as well as biological, adopted, step or foster. Interested fathers contacted the researchers by telephone or email to obtain further information, including informed consent requirements and remindres that ethics approval for this study had been granted by the Conjoint Health Research Ethics Board at the University of Calgary. Individual, face-to-face interviews were scheduled at times and locations convenient to fathers.

Data collection

Interviews were conducted by one of two trained qualitative researchers. Before interviews began, fathers signed informed consent forms and were informed that their data would be kept confidential. Fathers were also informed that for the purpose of reporting our findings, fathers, and people named by fathers, would be assigned pseudonyms and their other identifying information would be removed or masked. Further, participating fathers were invited to contact the senior researcher following data collection with any questions and concerns. Interviewers used a semi-structured interview guide to structure conversations around successes and struggles of raising autistic children, yet, allow flexibility to explore topics raised by participants (Cheuk & Lashewicz, 2015).

Questions to fathers began with a request for family background details including marital status, occupations of self and spouse/partner, and names and ages of their autistic and non-autistic children. In consultation with our partner agency collaborators, we included an interview question about the level of autism severity given that delineation of autism severity as mild, moderate or severe was part of standard intake processes for families accessing partner agency supports and services. As with our earlier caveat about our use of disability first language, we asked fathers about autism "severity" recognizing the contested nature of disability language that includes intense debates about the ways in which severity classifications can be diminishing to human dignity (Dyches et al., 2004; Yergeau, 2017). Our focus was on fathers' experiences with their autistic children, and we did not inquire about whether fathers themselves have disabilities.

We proceeded with questions about what it is like to be X's dad and how this fathering experience compares with experiences of other fathers of children with and without disability diagnoses. We asked who is responsible for meeting various needs for X including social, educational, financial and daily care. We spent more time on questions about which fathers were enthusiastic to share, and we concluded by asking each father to share a favorite story about X. Our interview guide is attached as Appendix 1. Interviews lasted an average of 90 minutes and ranged in duration from 36–133 minutes. Interviews were audio-recorded and later transcribed verbatim by a professional transcriptionist.

Sample and sub-sample description

Participants in our broader sample were 28 fathers of autistic children and most fathers were employed (27), had one or more post-secondary degrees or diplomas (24), and were married (27), biological fathers (26). Fathers were raising a total of 55 children, 33 of whom had received an autism diagnosis (29 boys; 4 girls). Four fathers were raising more than one autistic child. One participant is an adoptive father and another is a grandfather who is raising his biological grandson.

In an endeavor to narrow our focus to fathers' experiences of stigma, we examined data from a subsample of 16 fathers who were raising at least one autistic child and one non-autistic child. In selecting our subsample, we reasoned that for fathers simultaneously raising autistic and non-autistic children, stigma related to autism may be brought into clearer view by the comparative child raising experience. Our subsample is presented in Table 1 according to participants' pseudonyms, field of occupation, and the names and ages of their children with and without an autism diagnosis.

Table 1. Subsample description
FatherAutistic ChildChild without Autism DiagnosisField of OccupationPartner
JasonBrett (Age: 4 years)Henry (Age: 11 years)BusinessAlexandria
GarryHarlond (Age: 12 years)Erik (Age: 10 years)Public relationsCherly
IsaacReid (Age: 4 years)Leyla (Age: 11 months)EngineeringTerri
VictorKevin (Age: 7 years)Nathan (Age: 4 years)Psychiatric servicesJessica
GrantJed (Age: 8 years)Tami (Age: 5 years)SalesJill
RandyShiloh (Age: 6 years)Andy (Age: 4 years)LawMelodi
JoelLucie (Age: 3 years)Two step children (Names not mentioned; Ages: 21 and 22 years)TechnologyErica
OliverTroy (Age: 3 years)Olive (Age: 6 months)BusinessDesirae
EthanNoah (Age: 7 years)Anna (Age: 10 years)LawMina
TristanDuncan (Age: 11 years)
Elliot (Age: 15 years)
Leanne (Age: 10 years)
Jimmy (Age: 13 years)
Social servicesNelda
EliGarrett (Age: 9 years)Jacquie (Age: 7 years)BusinessVivian
BlaneLucas (Age: 5 years)Clay (Age: 19 years), Darren (Age: 15 years), Coral (Age: 7 years)ConstructionBrenda
MichaelTheresa (+ Down syndrome) (Age: 13 years)Eva (Age not specified)
Son (Age not specified)
AcademiaYvette
FredTrafford (Age: 12 years)Kalysta (Step daughter) (Age: 8 years)AcademiaJanessa
NicoToby (PDD –NOS)
(Age: 4 years)
Rudolph (Age: 9 years)Business TechnologyMinerva
WilliamBrandon (Age: 10 years)Mike (Age: 7 years)LawWendy

Thematic analysis

We looked for evidence of fathers' experiences of felt and enacted stigma (Scambler & Hopkins, 1986) as components of courtesy stigma (Goffman, 1963), in fathers' descriptions of successes and struggles in raising their children. Our analysis began with familiarization with data achieved through repeatedly listening to audio files and readings of corresponding transcripts. We then followed Bryman's (2016) three coding stages of thematic analysis lead by the first author who began with transcript by transcript coding of text giving particular attention to evidence of felt and/or enacted stigma. Microsoft OneNote was used to compile and separate the codes along with substantiating evidence in the form of quotations from each transcript. The first author then generated descriptive themes by grouping codes from stage one into categories, or "high-order themes." Throughout the coding process, the second and third authors, who were immersed in the data from their work on this and related manuscripts, discussed and developed the codes and descriptive themes with the first author. In the third stage of coding, the three authors molded the descriptive themes into analytic themes to reflect "new conceptualizations and explanations" of fathers' experiences of stigma (Bryman, 2016). An example of how a theme was molded using Bryman's (2016) coding stages can be found in Table 2.

Table 2. Sample thematic analysis per Bryman, 2016
Stage 1: codes1Stage 2: descriptive theme2Stage 3: analytic theme/subtheme3
Code: 'Feeling/fearing judgement in public leading to secluding self'

Sample quote for this code: "I began to recognize the social dynamics of being a parent and people judging you on your child. When Brandon outbursts [in public], people don't know that he has autism. You'd get those stares from people like get your child in order and you're a bad parent 'cause you're allowing your child to scream like that or misbehave"
Avoiding public setting/fear of judgement from strangers

Feeling Isolated

Self-seclusion

Protecting child with ASD

Judged by family members & friends
Isolation:
a) feeling poorly understood
b) fear of public-eye
c) protecting one's child

1 Stage one involved transcript by transcript coding of text. The codes (approximately 270 codes in total) were compiled and separated along with the substantiating evidence in the form of quotations from each transcript.
2 Stage two involved generating descriptive themes by grouping codes from stage one into categories or "high-order themes".
3 Descriptive themes were developed into analytic themes in stage three, which reflected "new conceptualizations and explanations" of fathers' experiences of stigma. Peer-debriefing was employed in this final stage of analysis to increase the credibility of our findings.

Trustworthiness measures

The trustworthiness of our findings is enhanced by our peer-debriefing measures, which included regular discussions between the authors about "convergence, complementarity and dissonance" within and between preliminary findings (Farmer, Robinson, Elliott & Eyles, 2006). Authors used a whiteboard for face-to-face discussions and email communication for virtual discussions to summarize then negotiate themes. We refined our shared analysis by removing codes that were irrelevant to our purpose and grouping overlapping themes (Morse, 2015).

Findings

We found virtually no evidence of fathers comparing their experiences raising their autistic children with their experiences raising their non-autistic children in relation to stigma. Nor did we find evidence of fathers' experiencing enacted stigma relative to their autistic children. However, fathers shared many experiences consistent with felt stigma, and from this evidence we generated four main themes: 1- censorship; 2- isolation, which includes sub-themes of a) feeling poorly understood, b) fear of public-eye and c) protecting one's child; 3- guilt; and 4- defying stigma. Further, consistent with our earlier discussion of how sociocultural codes of masculinity flow through ideals about fathering, we found considerable evidence of ties between fathers' experience of felt stigma and their adherence to ideals of stereotypical masculinity. Thus, we precede our stigma-specific themes with a contextual theme of "masculinity and fathering." Children mentioned by fathers are autistic unless otherwise indicated.

Masculinity and fathering

Fathers described pressure to be strong, in control, emotionless and "the man of the house," and they balanced being involved in their child's development with remaining composed in the face of difficulty. Stereotypical ideals of masculinity were evident as fathers described their limited social support networks while raising their autistic child(ren). Fred, employed in an academic institution and father to 12-year-old Trafford noted:

For Dads, there's a little bit, maybe it's machismo, maybe it's stereotyping, you're a tough guy so you don't need that [support] as much.

Grant, a salesman and father to eight-year-old Jed, was asked whether he connects with other fathers of autistic children. He echoed Fred's points saying:

I don't have a huge support group to talk to guys about you know how's it going… I don't search out support the same way that Moms do because… to meet somebody that you don't know really well and start talking about these stuff, I don't know, it's just different.

Correspondingly, William, who works in the legal field, and is father to ten-year-old Brandon, at one point characterized himself as an "alpha male" and described needing to remain strong for his family:

My wife's a very emotional woman, very soft, very caring, very maternal. The diagnosis devastated her and so I felt I needed to be strong and still do every day for my family.

As well as feeling a need to be strong, William described his role relative to Brandon in terms of protectiveness:

For a guy like me who's the alpha male, ah, when you're in protective mode and you're in a very analytical mode and aggressive mode which I often find myself with my son…'

Fathers described expending considerable effort to help their autistic children learn and develop communication skills and these fathering efforts occurred amidst feeling societal pressure to control their child's autism. Victor, who works in the field of psychiatric services and is father to seven-year-old Kevin, claimed that most fathers/parents struggle with finding the "miracle" of what can be done to change their child back to "normal." Fathers referred to pressures within the autism community, as they listed efforts taken by themselves and other parents aimed at "fixing" problems associated with autism, including putting their children on gluten-free diets, speaking to multiple experts, and using alternative remedies or 'snake oil'. Victor continued:

There's an awful lot of judgment within the community. Your kid's not [on] a diet, how dare you! You're going to vaccinate your next child. How dare you. Because you're seeking the miracle and there is not a clear understanding of the cause, you look for any explanation to explain what happened. And I think fathers [feel this] 'cause there's that sense of control, the male control freak.

In all, evidence of stigma in fathers' descriptions tends to be back-dropped by stereotypical understandings of masculinity and fathering in terms of the need for fathers to be protective, resourceful and in control.

1. Censorship

In our censorship theme, we capture evidence of fathers exercising caution about with whom, and under what circumstances, they discuss their autistic child(ren). Fathers described being secretive about their child's diagnosis or censoring what they share about their autistic child within their social and professional settings. Tristan, who works in social services and has two autistic children — 11-year-old Duncan and 15-year-old Elliot – described feeling he must censor himself even within a circle of other parents of autistic children:

I went to support groups and initially was afraid that if the other parents met my child, they would see me as a fraud. 'cause their kids are really disabled and my kid is not (Chuckle)….

Tristan singled out how a child's engagement with/attention span for television was used by one parent as a measure by which Tristan's child rearing challenges could be gauged:

Nelda and I are devastated and she [parent]'s like say: well does Trafford watch TV?, I'm like: yeah Trafford watches TV and she was like: oh you're so lucky he watches TV 'cause my kid doesn't watch TV very much and you know my kid has to do this but you guys are so lucky that you have, like what the heck you know, it's like one I thought you were supposed to listen to us. Two, this is not the time to sit there and tell me how fortunate I am, you know.

Tristan elaborated that such judgements within groups of parents of autistic children impact other parents as he described another father having been cautious about how much to share, lest he undermine the experiences of other parents:

[…] I noticed one Dad with the severe kid was keeping it quiet because he was being cautious about saying too much to undermine milder challenges which I'm learning aren't so mild. (Chuckle).

As the interview progressed, Tristan described his son Elliot as "pretty profoundly severe relative to other children." Tristan concluded that he resists comparing his child because, "human differences exceed enough of the autism for me to say I can't necessarily compare our child to that child."

Some fathers described avoiding sharing their child's autism diagnosis with their boss and/or colleagues. Joel, who works in the technology field and is father to three-year-old Lucie, did not share Lucie's diagnosis with anyone in his work environment. When Joel needs time off to attend Lucie's appointments, he does not specify the reason for his absence; Joel stated simply that his child's diagnosis is "none of their business." Relatedly, William (father to 10-year-old Brandon) tended to open up only with others who have similar experiences because explaining Brandon's autism takes a great deal of effort:

People will leave your home and say oh wow that child is really well-behaved, meaning 'oh those people really got it together.' When your child doesn't conform that way, or you have a different story to tell that's outside the normal box… it becomes not only a challenge to frame that story in a manner that you feel comfortable doing but it also becomes a challenge just to even talk about it because it just becomes so tiresome.

Grant (father to eight-year-old Jed) depicted difficulties he encountered in relating his fathering experience to fathers of non-autistic sons who are close in age to Jed. As part of his men's hockey team, Grant shared:

I sit in the dressing room, [with the] hockey guys and they've all got kids the same age that they're all playing hockey and … they're taking him to soccer practice. I have some shared experience, but from an emotional or, or challenge level specific to the ASD, I got no shared experience with the guys… they get talking about what tournament they went to or what they're doing or you know you'll get asked hey so is Jed in hockey? No. Well how come? Ah, well how long you got? (Chuckle) … So, you learn how to walk through…that mine field.

Grant's invoking of the image of a mine field is an impactful reflection of the challenges fathers face in finding the right time, place and audience to discuss their child's autism related experiences and needs. Contrastingly, William recalled reaching out to a colleague about his worries and puzzlement over Brandon's behaviours:

…one of my former colleagues here, his wife is a speech therapist and [I] had been speaking to him and he had offered his wife to come and have a look at Brandon and so she came one evening …She said I think he's exhibiting signs of autism and that was really the first time that we had really heard the phrase.

William went on to use the label of autism to propel his own research and secure a formal diagnosis and corresponding support services and ultimately, to describe Brandon in these terms. In all, these fathers depicted extra considerations they felt they needed to take in order to present their child to support group, workplace or friendship audiences.

2. Isolation

Fathers described situations in which they actively isolated themselves and their child as a form of protection from societal judgements. Fathers' isolation included a sense of not belonging experienced not only among strangers but also within circles of friends, family and co-workers. In our sub-themes, we distinguish fathers' experiences of isolation as: a) feeling poorly understood; b) fearing the public eye and c) protecting one's child.

a. Feeling poorly understood

Grant (father to eight-year-old Jed) described limits to his comfort in discussing Jed within his network, as people do not readily understand the complexity, time and effort of Grant's experience raising Jed:

The people that I am most comfortable talking to… it's tough to have those meaningful conversations with them, because they may not get it or may not want to get it. […] and that's the irony, what you see right now is the result of thousands of hours, thousands of dollars just in blood, sweat and tears, so don't tell me he's fine.

Randy, who works in the legal field and is father to six-year-old Shiloh, echoed feelings of not being understood by others. He claimed that because he is not able to explain why Shiloh has autism, it was difficult to relate to other fathers: "I don't really feel like I can relate to other fathers whether they have kids that are typical or atypical."

In addition to feeling poorly understood, fathers described how maintaining close relationships with friends who have non-autistic children can be difficult. For example, Fred (father to 12-year-old Trafford) described the effects of a divergence in fathering experiences between himself and a close friend:

We were really good friends, but it just reached a point where I couldn't spend time with him. When Trafford was younger it was difficult to see his son talking and doing all sorts of fun stuff with Dad and Trafford is sitting in the corner of the room… We've never talked about it but I think he understands why [we no longer spend time together].

These fathers illustrated how their own sense of being understood could hinge on understandings of, and comfort with, disability on the parts of others.

b. Fear of the public eye

For some fathers, going to public places involved feelings of fear, shame or frustration. William (father to ten-year-old Brandon) summarized going to the grocery store with his family:

I began to recognize the social dynamics of being a parent and people judging you on your child. When Brandon outbursts [in public], people don't know that he has autism. You'd get those stares from people like get your child in order and you're a bad parent 'cause you're allowing your child to scream like that or misbehave.

Randy (father to six-year-old Shiloh) echoed concern about being in public with his child:

There's a lot of pressure in public situations to keep cool, if they're looking when your kid is having a meltdown in the middle of Starbucks, I want to say, it's okay, he's autistic. I see people going oh what are they doing to their kid, are they beating him in the bathroom or something? […] it's hard to get that across to people that you don't even know, let alone trying to get it across to people you do know.

Fear of the public eye was conveyed by Nico, who works in the business technology field and is father to four-year-old Toby, who Nico distinguished as diagnosed with PDD-NOS (i.e. pervasive developmental disorder not otherwise specified); Nico shared a story about managing one of Toby's tantrums that took place in a toy store by leaving the store immediately for fear of how people might perceive him as a father: "I do the walk of shame out of the store with him (Chuckle) screaming under my arm, you know and it sucks." Other fathers shared Nico's experience of having become keenly aware that when their autistic child "acts out" in public, their parenting may be subject to harsh judgements from onlookers.

c. Protecting one's child

Fathers described isolating themselves and their child as a form of protection from societal judgements. William (father to ten-year-old Brandon) conveyed an early sense of protectiveness towards Brandon during the years following Brandon's diagnosis:

…my initial relationship with my son was to feel sorry for him, to underestimate him, to try and protect him, to isolate him, so he wouldn't be judged.

Alternatively, Tristan (father to 11-year-old Duncan and 15-year-old Elliot), worked to protect Duncan and Elliot from being excluded from society, specifically within the educational system: "I started with the fears of labeling, putting boundaries on their learning, people treating them special as opposed to competent. […]" Tristan addressed his fears by enrolling Elliot in a private pre-school without informing the school of Elliot's autism diagnosis in order to increase the likelihood of Elliot experiencing typical educational opportunities. Tristan described his views of early inclusion within a regular school system as key to Elliot growing up with non-autistic peers who would more likely come to accept him:

You have to put your kid into a school system right at the age where children are socially sophisticated, mostly likely to bully, be judgmental, fearful of being friends with a disabled kid 'cause they might not be accepted by their peers… so I went for the ideal model of inclusion

In other circumstances, fathers sought spaces designed for disabled children in order to protect themselves and their children from situations that did not fit with their children's needs and behaviours. Oliver, who works in business and is father to three-year-old Troy enrolled Troy in a dance class with other disabled children:

It was definitely a good environment where there were no expectations, no restrictions. Everybody understands that every child there has unique kind of needs and abilities, no pressure, so he enjoyed it and it's good for him to be in social settings.

Through careful consideration about what and with whom to expose their children, fathers endeavored to protect their children from being judged, restricted and excluded.

3. Guilt

Fathers described wrestling with the guilt in striving to meet employment responsibilities while fulfilling other family responsibilities. Striving for balance, and guilt associated with not covering all bases, took on added significance as fathers worried about providing financially in order to secure a future for their autistic child. Exemplifying stereotypically masculine ideals, Ethan, who works in the legal field and is father to seven-year-old Noah, described assuming Noah may not be able to have a job in the future. Thus, Ethan worked to put aside financial reserves for Noah's future even though this entailed long work hours away from home for Ethan:

When I'm home I feel a tremendous amount of stress and when I'm away I bear a tremendous, tremendous sense of guilt. […] I have to work as hard as I do, to make as much money as I can, to save it for the future.

Relatedly, Michael, who works in an academic institution and is father to 13-year-old Theresa diagnosed with both autism and Down syndrome, reflected his values of self-sufficiency as he expressed worries that Theresa will not be able to live independently and further, that Theresa's non-adherence to some conventions of independent life could present an imposition on his other children:

Our biggest concern is Theresa's getting older and we're getting older (chuckle). We would like Theresa to be as self-sufficient as possible. Our biggest concern is what's going to happen to Theresa in the future. We can't really ask our children, you know they've got their own families and their own lives.

Likely tied to values of self-sufficiency, some fathers conveyed feelings of guilt in the form of self-blame and feeling responsible for their child's ASD diagnosis. William (father of 10-year-old Brandon) shares:

[I engage in] self-analysis of what did we do wrong, the two big issues were the childbirth and vaccinations, and then we started to beat ourselves up […] had we known more we could have protected him. These fears and concerns are still there and will probably be there for the rest of our lives.

Fathers illuminated guilt as multi-faceted and ranging from angst over doing enough to provide for their child's uncertain future to questioning parenting decisions during their child's early life.

4. Defying stigma

Although fathers described identifying and responding to negative judgements related to their child's autism, they also gave evidence of having ignored or reacted against such judgments through engagement with their children and with the environments surrounding their children. Fred (father of 12-year-old Trafford) defied stigma in his everyday life by being bold and unapologetic about his child's autism:

Trafford's very integrated in my public life, not just at home and my work life, and I don't really care what other people think about it […] when Trafford was younger, 'cause people would look at him funny, I made him a t-shirt that said fuck you, I'm fine.

Other fathers described creating and embracing father-child activities with like-minded others. Victor, (father of seven-year-old Kevin) shared:

I think we haven't run into stigma. Maybe 'cause right now I'm around other Dads who are in the same boat and are active. [I went to] a birthday party this past weekend and mostly the Dads are with their kids at these parties (chuckle) not the Moms

Blane, who works in construction and is a father to five-year-old Lucas, as well as Garry, who works in public relations and is father to 12-year-old Harlond, also used positive father-child engagement to defy stigma. Blane takes Lucas to social events, such as sporting events where everyone is welcome and feels included. For his part, Garry takes pride in being confident and open with his boss about Harlond's diagnosis and Garry's corresponding needs to attend meetings and appointments pertaining to Harlond's care.

Fathers described positive experiences that helped them grow and appreciate their children. William (father of ten-year-old Brandon) reflected on how raising an autistic child leaves him and his wife "more humble, aware, and empathetic" in ways they would not otherwise have been. Indeed, Grant (father of eight-year-old Jed) concluded his interview saying that he is a, "real proud father of Jed and, and on goes the battle." In all, fathers persevered by creating positive experiences for their children as well as by challenging and disrupting experiences that are negative for their children.

Discussion

We join other stigma researchers concerned with the negative consequences of courtesy stigma, which include expectations for rejection in social interactions in light of ties to a stigmatized individual (Frost, 2011; Mak & Kwok, 2010). Those who experience courtesy stigma often feel compelled to take measures to protect themselves against rejection, and for our sample of fathers, measures included isolating themselves from certain relationships and/or strategically navigating relationships and public spaces.

We see resonance between our findings and those of researchers who studied internalized stigma toward fuller understandings of how negative views of disability can be adopted by those who have a disability and by their closely associated friends and family (Frost, 2011; Mak & Kwok, 2010); this was evidenced in fathers' descriptions of feeling a need to explain their child's difference to others, yet being keenly aware of the limits of others' willingness or ability to understand and/or be satisfied by such explanations.

Further, felt stigma related to disability can be influenced by other socially constructed identities, such as gender, race, and sexual orientation (Frost, 2011; Scambler, 2004). While we did not collect data about race and sexual orientation, the themes we generated reflect an intertwining of ideas about disability and gender. Expectations for self-sufficiency feature prominently in logics of both ableist stereotypes and stereotypes of traditional masculinity that shape fathering and these logics permeated some fathers' descriptions. For example, William's adherence to ableist logic was evident in the negative views of disability conveyed by William in his description of his initial response to Brandon's diagnosis as being "to feel sorry for him, to underestimate him." And William's declaration of himself as an "alpha male" was replete with distinctly masculine pressures to be protective, financially resourced and in control.

A further intertwining of ableist and masculine logics was exemplified in fathers' contemplations of their children's futures in terms such as the Ethan's angst over the prospect that Noah may never participate in conventional employment. Ethan described this worry as fueling the pressure he feels to work extended hours to provide financially for Noah's future, and this pressure is compounded by Ethan's guilt over leaving his wife home to manage with Noah. Like Ethan, Michael communicated angst about the future in terms of limits to the self-sufficiency Theresa might achieve. Michael spoke of wishing to avoid his other children being expected to care for Theresa. As such, rather than presenting Theresa as "genealogically equivalent" to his other children (Finch & Mason, 1993), Michael presented Theresa as a care recipient. Ethan and Michael seem to disqualify Noah and Theresa from status as employees or siblings, and through this, align with Farrugia's view that those who are non-disabled tend to construct the "autistic subject position as ontologically other" (2009, p. 1013). As such, some fathers contribute to the perpetuation of stereotypes against disabled individuals through internalization of such ableist notions and, therefore, act as both recipients and perpetuators of stigma.

Like the parents (mainly mothers) of children with an array of childhood disability/developmental delays whose experiences were studied by Kelly (2005) and Rehm and Bradley (2005), fathers in our sample endorsed the value of medical knowledge about their child's condition as part of managing stigma. Medical knowledge was a vehicle through which fathers could take charge and mobilize resources for their child as evident in William's description of the helpfulness of having a colleague's wife identify Brandon's behaviours as consistent with autism. Moreover, medical knowledge, as well as legitimating a child's behaviour, was used to validate the extent of disability-related demands parents claimed to face as reflected in Tristan's depiction of tensions among parent support group participants over the respective severity of their children's conditions, which could be gauged in terms of whether children watched television. Such "race for the bottom" comparisons are part of ableist views of disability as undesirable; greater severity is equated with greater undesirability.

We are mindful of how stereotypes of masculinity and ableism can be shored up by the masculinized, ableist science of medical knowledge used to classify severity of conditions. Three decades ago, Ruth Bleier helped us think about the distinctly able and masculine authority of medical knowledge in her piercing analysis of what the white lab coat had come to represent. Bleier (1988) describes how the lab coat literally and symbolically wraps the scientist in "a robe of innocence – of a pristine and aseptic neutrality – that gives him, like the Klansman, a faceless authority that his audience cannot challenge. From that sheeted figure comes a powerful, impenetrable, coercive, anonymous, male voice (Ruth Bleier, 1988, p. 62).

We are heartened by evidence of fathers defying stigma by confidently engaging and immersing their children in public settings. Fathers like Garry take pride in openly sharing Harlond's experiences and needs with others including his boss. Victor finds understanding through his alliance with other fathers who are "in the same boat" while Fred's bold design of Trafford's t-shirt gives Fred and Trafford an upper hand. Indeed, taken together, this combination of strategies of employing honesty, solidarity and brashness comprise a promising redress to ableist stigma.

Yet we remain concerned with the added demands that navigating stigma entails for fathers/parents already managing children's autism-specific needs. Ableist stigma intertwined with stereotypes of traditional masculinity may leave fathers without support and/or reluctant to seek support. Additionally, fathers may feel distinctly worried about providing for their child's future and responsible for protecting their child from negative societal-level judgements. Moreover, being immersed in ideologies of ableism and traditional masculinity may leave fathers internalizing stigma by situating and responding to their child's disability in ways that perpetuate these very ideologies of, what McRuer (2006) calls, making non-normative pathways less visible or desirable.

Limitations

First, our understanding of courtesy stigma is limited by the homogeneity of our mainly white, heterosexual sample of fathers of relatively high socio-economic status. Second, by conducting a secondary analysis, we risk decontextualizing the experiences fathers shared (Bryman, 2016). Relatedly, we present our analysis without having asked fathers questions about their experience with stigma and without having probed the experience with stigma we argue as evident in our data. At the same time, our impetus to analyze our data for evidence of stigma concepts originated in noting stigma experiences woven through fathers' responses to the questions we asked about successes and struggles in raising their child/children with autism thus the evidence of stigma we present in this secondary analysis has a distinct quality of having been presented without being directly prompted.

Conclusion and implications

Courtesy stigma in the form of felt stigma is expressed by fathers through self-censorship, isolating themselves and/or their child with autism, and feeling guilt. These experiences of stigma, rooted in ableist stereotypes, are intertwined with stereotypes of traditional masculinity that are embedded in societal structures (Ahmedani, 2011; Corrigan & Rao, 2012; Frost, 2011). Indeed, knowingly or not, fathers may be influenced by felt stigma in deciding whether they can disclose their child's autism diagnosis to others, and even in the language they use to describe their own children. Fathers' actions, including isolation and making extensive efforts to provide for their child's future, are aimed at protecting their autistic children from stigma. While fathers take actions to defy stigma, they also feel guilty for not doing enough as a protector and provider. Although fathers experience felt stigma individually, we argue these individual-level experiences are rooted more broadly in societal-level stigma perpetuated towards people with disabilities (Corrigan & Watson, 2002). Our work contributes to the scholarship on courtesy stigma as experienced by fathers raising autistic children, which is in its early stages of development and warrants further attention from researchers. In presenting our findings to encourage further research about how stigma affects fathers raising autistic children, we argue there is a particular need for studying stigma experiences of samples of fathers that include or target variations in backgrounds along lines of race, culture, socio-economic status and family structure.

Disclosure Statement

The authors report no potential conflict of interest.

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Endnotes

  1. This work was supported by Policywise (formerly Alberta Center for Child, Family & Community Research).
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  2. In this paper we use disability-first language (i.e. disabled people, autistic children) despite person-first language being upheld in Canada as the most inclusive language available (Titchkosky, 2001). In so doing, we recognize the long-contested nature of disability language and we align with scholarly resistance to person-first language on the grounds that person-first language fails to interrogate biomedical "deficiency" focused frameworks that suggest disability is a problem that individual people "have" (Linton, 2006; Titchkosky, 2001). Yet, in using disability-first language, we recognize the limits of all disability categorizations given that choice of categorical language varies across time and geography and in accordance with the goals of the health and social care providers, researchers and individuals with lived experiences who are employing the language.
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Appendix 1: Interview Guide

Understanding and resourcing fathers of children with ASD Fathers: Interview Guide for DADS Phase 1

Family background:

  • Age and gender of autistic child/children, severity of autism (i.e. severe, moderate and mild, and verbal or non-verbal)
  • Age and gender of other children in the family
  • Father relationship to autistic child (biological, step, adopted, foster)
  • Father's marital status
  • Parents' occupations and level of education
  • Please share some details about what your life was like before you had X/children.
  • Would you like to choose pseudonyms for your family members; we will use these in our research reports.
  1. What is it like being X's Dad? Can you share a favorite story about X? What are the main stresses you face as X's Dad?
  2. How has your experience been similar to/different from that of X's Mom? From that of other fathers of children with disabilities/autism? From that of other fathers of typically developing children? From you experience as father of X's sibling(s)? From you own experience growing up with you father?
  3. How are parenting tasks and responsibilities shared in your family?
    1. Who is in charge of the children's daily care and affection needs?
    2. Learning/school needs? Social/recreation needs?
    3. Providing financially for the family?
    4. Other needs that have not been mentioned?
  4. Where do you get support in your parenting? What supports and services have you accessed/are you accessing for your autistic child? For your family in relation to your child's autism?
    1. What aspects of these supports and services have been most helpful?
    2. How have supports and services responded to your priorities for your autistic child and your family? For you as a father?
    3. Have you been supported to prepare for your child's next steps?
    4. To connect with other families/parents/fathers? What do you regard as effective ways of connecting?
  5. Is there anything else you would like to share?

GIVE THE GIFT CARD/EXPRESS GRATITUDE

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