Absenting: Fathers of Children with Autism Face the Future

Kianna Marie McCoy, Ph.D., MOT, OTR/L, ICDL
Susan Braude Stillman, EdD, Six Seconds

Abstract

Absenting is defined as the father’s fear of what will happen to his child with autism when he is no longer living. The core variable, absenting, was discovered from data based on the main concern of fathers of children with autism. This is the first time in the literature that absenting has been used in association with fathers of children with autism. Fathers of children with autism face the future to resolve absenting in three ways: 1) preparing financially, 2) preparing for future living, and 3) preparing the child to live life to the fullest. Conditions affecting absenting are the severity of the disability and gender of the child. During the process of resolving their main concern, fathers experience self-transformation. This process includes three linear stages: 1) reaching out to the community, 2) balancing family relationships, and 3) helping others. Understanding the theory of absenting can help guide treatment and support for the child and family.

Keywords: fatherhood, autism spectrum disorder, caregiving, classic grounded theory

 

Introduction

Fatherhood is underrepresented in academic philosophy and even less prevalent when considering the roles and experiences of fathers who are raising children with autism (Mitchell & Lashewicz, 2016). Gaining information on the perspectives of fathers is key to understanding what it is like to raise a child with autism. Furthermore, the information contributes to a framework in which clinicians can understand and support fathers more effectively. Flippin and Crais (2011) suggested that perceiving and highlighting the “role of fathers” (p. 25) is important due to the unique contribution that they make to the child’s development. Having the father’s perspective can offer insight that provides clinicians with information on resilience, family and childhood development, and positive aspects of parenting.

While many research studies have focused on the role of the mother in parenting a child with autism, obtaining information from fathers can provide a more holistic view of how autism affects the family unit. Understanding the perspectives of fathers through a classic grounded theory study provided insight and understanding about how fathers contribute to raising children with autism, how they are coping, and what they are gaining from the experience.

The discovered core variable, absenting, which was the main concern of fathers in this study is defined as the fear of what will happen to the child with autism when his or her parents are no longer living. In other words, when the parents are absent, will the child be cared for in the same way he or she was while the parents were living? The fear of absenting consumed the father’s thoughts and actions. The resolution to absenting led each father to face a future full of unknown variables and then begin to prepare for that future. Each father wanted to ensure that their child had enough money for future expenses, a safe place to live, and a good quality of life. As fathers attempt to resolve this life-long concern, they go through a process that brings about self-transformation. This process begins as the father first reaches out to his community for help and support, second turns inward to focus on family and marital relationships, and third shifts his focus to helping others.

Methodology

The purpose of this study was to gain insight into the experience of father’s raising a child with autism. Classic grounded theory was applied to gain insight into the main concerns of fathers, what they are doing to resolve those concerns, and how raising a child with autism has affected their lives and the lives of their family members.

Participants who qualified for this study were fathers of children with autism. The fathers were recruited via social media (Facebook) and word of mouth. Eventually, 10 fathers were interviewed for this study.

Primary data for this study were collected by interviewing fathers of children with autism. Interviews were conducted in the fathers’ homes or by telephone. The interviews were recorded and later transcribed and coded to identify emerging data points. As interviews were finishing and saturation was emerging, a literature review was conducted and additional data was gathered to determine if the additional data helped to support the theory of absenting. Based on Glaser’s (1998) suggestion that “all is data” (p. 8), information was gained from documentaries, websites, and social media related to the experiences of fathers of children with autism.

The initial interview was conducted with one father of triplets with autism. This interview led to other interviews as referrals were received and fathers agreed to participate. Eventually, the core variable which was the main concern of fathers of children with autism was identified. Themes that arose in the initial interview influenced the direction of the following interviews. As the core variable was determined and similar themes were found within each interview, subsequent interviewees were asked to confirm the core variable and associated themes.

Each interview was recorded and notes were taken during the interviews to help in following up with the interviewee on certain concepts and to watch for emerging themes. During the interviews, the notes helped to guide follow-up questions to clarify and support elaboration on certain concepts.

Substantive coding, which included open and selective coding, was used to organize the data and support the emergence of the core variable. After the data were coded and a core variable was established, additional codes were added to shape the theory. For example, absenting, the fear of what will happen to the child with autism when the father is no longer living, became the core variable. Selective coding led to the emergence of the resolution of absenting and additional variables or concerns associated with absenting. Theoretical sampling was conducted to support the emergence of similar data points and qualities to support the developing theory (Glaser & Strauss, 1967).

During the process of coding, memoing, and sorting, a constant comparative analysis (Glaser & Strauss, 1967) connected the data to conceptual ideas that supported the development of the theory of absenting. Various trends and data points were discovered during the interview process that helped to create the structure of the theory. Analyzing and comparing the data established the main concerns of fathers, how they were resolving those concerns, and the impact of the concerns and resolutions on the father and the family unit.

Glaser’s theoretical codes were used as a guideline to help shape the theory of absenting. Glaser (1978) taught that a basic social process describes social patterns of society which are observed, contemplated and organized during the research process. The theory of absenting was found to be a basic social process (Glaser & Holton, 2005) that includes stages of a process that fathers experience while trying to resolve their main concern about raising their child with autism.

Theory of Absenting

The core variable that was discovered through interviewing fathers in this study was labeled absenting. The future is full of unknown variables, and many fathers are deeply concerned about the overall well-being of their children when the parents are no longer living and able to control or influence the future wellness of their children. The absenting process begins with the initial speculation of autism and continues to varying degrees throughout the life span of the child. The theory of absenting explains how constant worry about the future becomes a process that influences the father’s interactions with his community and family and eventually transforms his views, beliefs, and sense of self.

Kanjilal (2014) defined absenting as “being away” (p. 11). In this grounded theory study, absenting is used to define the core variable, which is concern about what will happen to the child when the parents are no longer living. This is the first time in the literature that the term absenting has been used to describe this particular concern of fathers of children with autism. Specifically, the core variable, absenting, is the fear of how one’s child will be cared for and what the child’s overall quality of life will be when the father or mother is no longer alive and able to supervise the care of the child. This concern was constantly on the minds of most of the fathers of children with autism who were interviewed in this grounded theory study and drove many of the decisions that they made for themselves, their family, and their child with autism. One father said, “The death [concern] is the one that you cannot control, and that’s what is extremely scary. . . Not a single day goes by without that thought crossing my mind.”

Facing the Future

Facing the future became the resolution to absenting. Three main categories emerged as fathers spoke of facing the future. First, the fathers were worried about finances to meet the living expenses of their children with autism. Second, they were concerned about who would take on the role of caregiver when they were gone. Third, and most important, they were concerned about the overall quality of life that their child would have as an adult. These subcategories of absenting, were the constant drive behind the actions the fathers took to help prepare their child now and into the future to have a happy and fulfilling life.

Preparing Financially

The first category of resolving the concern of absenting that emerged from this grounded theory study was that many of the fathers expressed concern about future finances needed to support the child with autism. Rosanhoff (2014), Associate Director for Public Health Research with the entity Autism Speaks, stated that, when calculating the total costs associated with autism throughout the lifespan, the bulk of the costs are found in adulthood. Costs associated with adulthood may include housing, health care, salary for a caregiver(s), food, clothing, hobbies, and other costs. Some fathers in this study had started to find alternative ways of making and saving money for the future. Some assumed that they would be the ones to take care of the child with autism as an adult, followed by the child’s siblings; others were more open to looking at alternative living situations.

The estimated costs associated with taking care of a child with autism after the parents are deceased, according to one father, may be in the millions. According to some of the fathers in this study, many unknown factors can affect this cost, such as the skill level of the caregiving adult; who cares for the autistic person, such as a family member or a governmental program; or the area in which the autistic person resides. Planning for unknown situations and costs that are potentially out of reach for most families was a great concern for the fathers in this study. Some fathers noted that financial planning can be very stressful and commented that money alone cannot guarantee that the child will be safe and cared for adequately. One father shared his thoughts about the future and his finances:

When I first started looking into real estate investing, I wanted to do it because I wanted to find a job that made a lot of money. But I would say it’s completely transformed my motivation for doing a lot of what I do, because my main motive, my primary motive, is no longer to make money for the sake of money, by my primary motive is to make money for the sake of providing long term for a child . . . and I’ve done numbers and seen studies that it requires about three million dollars to support a person with special needs for their entire lifetime. And, I don’t have nearly that much money for myself to retire on, much less [for him].

Preparing for Future Living

The second category of trying to resolve the concern of absenting was the worry of preparing the child for his or her future. Participants expressed concern about preparing the child to live as independently as possible as an adult. Most were more concerned about who would take on the responsibility of managing that care when they were gone. They communicated concern for the child’s safety and well-being when they were no longer in control of their child’s care. They wanted to ensure that their children would be in safe living situations with caregivers who cared for them. When pondering about his son’s future living situation, one father commented,

We don’t even know what his future looks like in terms of who’s going to be his support in the future. We’re pretty sure his sister’s going to be a big part of it, but what will his future look like when he’s around people who are not as mindful or forgiving or trusting or—that don’t have that same relationship with him as we do?

Preparing the Child to Live Life to the Fullest

The fathers in this study wanted their children to live fulfilling lives, in addition to being safe and protected. This desire is the third category associated with the resolution of absenting. Most of the fathers spoke of hoping that the adult child with autism would have an opportunity for some type of employment. Having the child contributing to society and being happy were very important to most of the fathers in this study. “We need to take a step back so we can evaluate what is going to make her happiest in the long term,” stated one father. When talking about his son’s future and referring to a hobby that the son enjoyed, another father stated:

We’re trying to steer that in a productive direction where he could turn that into a marketable skill, that he can do something like that and enjoy doing it, do what he enjoys doing for the rest of his life, but do it by adding value to other people. And maybe, doing it in a social situation where he can include other people, and have other people be a part of that.

Having the son or daughter with autism become a productive member of society and have a meaningful life was very important to most of the fathers in this study. According to many of the fathers, the opportunity to learn skills that could become marketable was viewed as something that could increase the happiness and well-being of the child.

Some fathers reported that they had begun to worry about their future absence when they first began to understand autism. They noted that this fear or concern never leaves the back of their minds. Absenting forces them to reevaluate their careers, become mindful of the relationships with their children in ways that they might not have done otherwise, and leads to the desire to reach out to help others in a variety of ways.

Conditions and Consequences That Influence Absenting

“Theoretical codes describe the world to us theoretically and can span all current perspectives depending on how they are chosen and combined” (Glaser, 1978, p. 72). Conditions and consequences were chosen to outline what conditions were associated with absenting and how these affect the core variable or main concern of the father. Conditions that affect absenting are the gender of the child and the level of severity of the child’s autism. Many unknown variables exist in any child’s future; however, with a child with autism, the concern about the future of the child is exponentially greater, especially if the child is considered to be in the “severe” range and is not able to communicate effectively. The condition of severity and the inability to communicate produced the greatest concern for these fathers. Fathers of female children with autism had greater apprehension about the child’s safety in the future. The consequence of both conditions of gender and the severity of the autism were associated with a higher intensity of concern with regard to absenting.

Gender of the Child

The concern for safety was very real for the fathers in this study, especially for the fathers of female children. Fathers of both male and female children expressed fear of what will happen to the child during aging, but there were a few differences associated with gender. In this study, the fathers of daughters expressed concern about the daughter’s physical and sexual safety; the fathers of sons did not mention concerns about sexual safety. One father shared,

There’s a lot of good people in the world, but there’s a lot of bad apples, too. And the bottom line when you have daughters is, one of the things you worry about is . . . specifically rape. Even a normal person has a hard time after something like that happens. . . . But now imagine that your child, something that happens to her, how is she going to express that? It’s going to be difficult for her to express that, “Hey, something just—someone did something wrong to me.” I think if it was a boy, then—not that it can’t happen to men in this world—but it would be less of a concern.

The literature supports these fathers’ fears about safety. “People with intellectual disabilities are sexually assaulted at a rate seven times higher than those without disabilities” (Shiparo, 2018, para. 6). Children with autism are a vulnerable population, considering that about 30% of those with autism have an intellectual disability (Baio et al., 2018) and most children with autism struggle with social situations.

Fathers of males were less concerned about their child’s physical safety then the fathers of females. Fathers of males were concerned about their children’s safety but they were more concerned about what might happen if their sons were in a challenging situation in public and could not communicate clearly with others. Some fathers were also worried about what might happen when their son was stronger than the mother or other children and still had “meltdowns.” Some fathers were concerned about how the male child would struggle with puberty and sexuality without the cognitive ability to understand how to control their body.

Future living conditions seemed to be a more intense concern for fathers of females. Having their daughters cared for outside of the family did not seem to be an automatically safe option for any of them. However, they were also unsure of who in the family would be willing and able to take on the responsibility. Additional gender differences may be explored in greater depth in future studies.

Level of Severity of Autism

In the theory of absenting, it appears that the intensity of concern is in direct correlation with a sense of helplessness, with the inability to control what happens in the future. The data suggested that fathers who classified their child as being more severely affected tended to have a greater intensity of concern about the safety of the child now and in the future, compared to fathers whose children were older and higher functioning. The intensity of stress also seemed to be higher when the child had more severe symptoms, such as minimal verbal skills and significant emotional challenges. For example, some fathers elaborated on the child’s “meltdowns” in public that could affect the safety of the child and those around him or her.

When thinking about the severity of a person with autism, one might consider independence or skill level, which could determine what type of support the person might need in the future. Fathers in this study wondered whether their child might be able to live independently or have some type of gainful employment. They also wondered whether their child would be able to care for his or her daily living tasks, such as grooming and cooking, or be able to maintain proper health and nutrition. Some fathers commented that, for a child with a more severe level of autism, many independent living skills can be difficult and can cause great concern about the future.

The outlook and end goals were also very different for fathers who had children who were higher functioning versus those who had children who had more severe autism. Fathers of children who were higher functioning had more expectations and optimism about the opportunities in which their children were involved, compared to fathers of children with more severe autism. The intensity of concern was less among fathers of children who were higher functioning and their level of hope for their child’s future seemed to be higher.

The intensity of the fathers’ concerns was also affected by the inability to control what would happen after the father and mother were no longer living. Many unknown variables can affect a child’s situation, such as programs for adults with autism and individual needs or skill levels, and can determine how much or what type of support the adult with autism will need. The question of how much money each family will need is dependent on what type of support the child will need in the future and what governmental resources will be available. The child with more severe autism will need more resources and support than a child who is higher functioning. However, regardless of the functioning level of the child, the concern about being absent in the future was consistent among the fathers in this study. Even the fathers who had children who were higher functioning and had more opportunities expressed concern about their child’s future when they were no longer present and able to affect what might happen to or for the child.

The Process of Absenting

The process associated with the resolution of absenting (Glaser, 1978) includes three linear stages. These stages occur throughout the child’s and father’s lives that shape and eventually transform the father. These stages are described here in three sequential categories: (a) community outreach, (b) balancing family relationships, and (c) helping others. Each father in this study shared experiences in all three categories.

The process begins with community outreach that leads to an increased sense of awareness regarding family and eventually to increased introspection of self. As the father goes through the process of absenting, a change occurs that eventually transforms the way he views himself, others, and the world at large. This transformation has led many fathers to desire to go beyond helping and supporting their own child to wanting to help others in the autism community. The process begins with the speculation that one’s child has autism. From this speculation the parents turn to their community for help. The father therefore connects with a new community of professionals, and gains membership in the world of autism.

Stage 1: Community Outreach

The first stage in the process associated with absenting is community outreach. The first stage begins with reaching out to the community for a diagnosis of autism and to gain support for the child. Often, parents of an undiagnosed child with autism suspect that there is something different or even wrong with their child when the child is a toddler. Most children are diagnosed at around the age of 3 years 10 months (Christensen et al., 2016). Perhaps the child is not reaching certain development milestones; the child may have delayed language or struggle with diet, reflux, or fussiness. When parents suspect that something is not typical, they usually contact a professional in the community, such as a pediatrician or teacher, and eventually seek information and advice from professionals to obtain a diagnosis. After the diagnosis has been made, services begin and the family is surrounded by community professionals for many years to come, if not for the duration of their lives. The process associated with absenting begins with the outreach to the community for support and guidance.

Stage 2: Balancing Family Relationships

The second stage in the process associated with absenting is balancing family relationships. Preparing the child with autism for the future requires time and effort, which at times places a strain on family relationships. Each father in this study described how he was trying to balance the time spent with his child with autism and the time invested in the other relationships within his family.

Autism was new to each father in this study. Although they had been aware of autism, they did not know what to expect when it affected their own family. Most of the fathers spoke about the challenges that autism brought to their marriages and to their other children. These fathers were open about the challenges that they experienced, along with the positive aspects of raising a child with autism. They had a deep awareness of the strain that having a child with a disability could bring to their marriages; many were proactive in finding ways to keep themselves and their marriages healthy. They were also mindful of the potential impact on the relationships among their children, depending on the chronological stages of their children. Each father tried to balance the relationships within the family, aware of what he needed to do to keep the family functioning on a healthy level. While it was not always possible (some fathers reported strained relationship between siblings and even with their wives), they all had great awareness about these relationships. Building the relationships in the family became extremely important as the parents realized that sibling may one day take over the role of caregiving.

Stage 3: Helping Others  

The third stage in the process is helping others. In the theory of absenting, the process of a father’s connecting to the community and learning to balance family life leads to the desire to reach out and help others. For many of the fathers, this process led to expanding their focus beyond the scope of helping their child to one of wanting to help others in similar situations. Some wanted to teach others what they had learned along their journey, one father helped to open a school for children with special needs; others wanted to establish more resources for adults with autism. Each father expressed different ways in which he had the desire to help others who were sharing their journey of raising children who had autism.

The process of trying to resolve his concern of absenting provides opportunities for growth and eventual progression of self. This occurs after gaining support and experience though his own challenges and successes while raising his child with autism. Fathers learn to reimagine their future along with their child’s future. Each father spoke of experiences with fatigue and stress when talking of raising their child/children with autism. Many fathers reported becoming more mindful of relationships and learning to celebrate small successes of their children. All of these experiences led the fathers to reflect on their situation. Many chose gratitude to guide them through the journey of raising their child with autism. They began the process of transformation, often influencing their views on faith, religion, and politics, while granting them more introspection, awareness, and empathy.

Discussion

A literature review was conducted to compare and contrast the theory of absenting with the current body of literature. The review of literature pertinent to the focus of this study addresses (a) fathers of children with autism, (b) stages of raising children with autism, and (c) the alignment of absenting themes in this study and in the literature.

Fathers of Children with Autism

Shave and Lashewicz (2016) suggested that the growing population of children with autism provides a reason to explore fatherhood, since most interventions for children on the spectrum are not conducted with the father in mind. The experiences of fathers who have children with autism are absent from the current body of literature (Burrell et al., 2017; Hannon & Hannon, 2017). The limited number of studies that have looked at the father’s participation in therapy and education have shown positive outcomes and helped to define the roles and concerns of fathers regarding their child with autism.  Flippin and Crais (2011) suggested that including fathers in intervention can help to reduce the stress of the mother and potentially “lead to positive collateral effects for families of children with ASD” (p. 35). A deeper understanding of the perspectives, needs, and current opportunities for involvement of fathers is needed to support fathers and families of children with autism, as well as the person with autism.

Dardas and Ahmad (2015) reported that in the past few decades the focus has shifted to fathers’ participation in their children’s growth and development. They further stated that, due to the era of paternal discovery created by “social, political and economic issues” (p. 626), fathers have been shown to be increasingly engaged in rearing their children and participating in household duties. This may apply to fathers of children with autism, especially when they are involved in their child’s intervention.

During the review of the literature conducted for this study, the term absenting was not found to be used to describe this phenomenon. However, multiple studies on fathers of children with autism and intellectual disabilities have reported fear or concern about the future (Davys et al., 2017; Donaldson et al., 2011; Pottas & Pedro, 2016). For example, Burrell et al. (2017) found that independence was a primary concern for fathers regarding the future well-being of their children. In this study, fathers said that supporting their child’s skills for independence involved the child learning basic life skills and also learning skills to help the child find a way to gain employment in the future.

The child’s integration and acceptance into society was also important for these fathers.  This is similar to findings reported by Donaldson et al. (2011) that fathers worried about whether their children would be able to live independently as adults and looked for ways to integrate their child into society to find acceptance and some type of “normalcy.”

Understanding the child’s diagnosis, including the severity of the condition, led some fathers to shift their expectations and hopes for the future of their child. This theme was reported by Pottas and Pedro (2016) in their study of fathers of children with autism. When sharing concerns about their child’s future, the fathers in that study mentioned worrying about future care for their child and how they could “secure a future” (p. 552) for their child. These findings are consistent with the theory of absenting.

Stages of Raising Children with Autism

Absenting is a basic social process that contains linear stages that fathers experience during their journey of raising a child with autism. The process associated with the theory of absenting includes establishing community outreach, balancing family relationships, and helping others. Other studies have described similar stages that fathers experience while raising a child with autism. Vacca (2006) conducted a study on parents of children with cerebral palsy and identified five phases that parents experienced:

Normative phase (expecting a healthy child)

Self-study phase (self-blame for the birth of the child with a disability)

Acceptance phase (realization of the disability and embracing the child)

Determining quality of life phase (examination of marital relations, mental health)

Planning for the future phase (considering job changes, moving, future births) (p. 68)

Vacca (2013) replicated that study with fathers of children with autism to see whether the same phases were present. He found that four of the five phases pertained to fathers of children with autism: “normative phase, acceptance phase, determining quality of life phase, and planning for the future phase” (pp. 88-89).

Absenting Themes Aligned with the Literature

Balancing family relationships is an important challenge for fathers of children with autism. The time required to take care of a child with autism often takes from the time that the father can spend with his other children and his spouse (O’Halloran et al., 2013). In a study conducted by Keller et al. (2014) on the relationships of fathers of sons with autism, the fathers were found to be highly involved with the success and development of their sons, sometimes at a cost to the father’s personal life and relationships with his spouse and other children.

Creating a balance between nurturing the relationship with one’s spouse, other children, and oneself is a delicate balance for fathers. Hock, Timm, and Ramisch (2012) found that parents went through two phases after receiving a diagnosis of autism for their child. The first phase they called “tag team” (p.411), described as a shift in focus on the child as the parents work as a team to meet the needs of the child. Hock et al. explained that this allowed parents to increase their team effort in parenting, which resulted in more positive family structure and routine but did not afford parents the opportunity to focus on their personal relationship. The second phase was called “deeper intimacy and commitment” (para. 14), which was a shift to focus on the parenting relationship based on the parents’ realization that a strong marital relationship was healthy for the family. These findings are similar to the absenting stage of balancing family relationships.

Learning to alter expectations was a way of coping for some fathers of children with autism. Mitchell and Lashewicz (2015) found that some fathers learned to replace their former vision of leisure activities with new activities that they could enjoy together. Some fathers had expectations of certain activities that they would do with their children, which were similar to activities that they had done with their fathers (Keller et al., 2014). Not being able to participate in sports with their children, especially their sons, was a challenge for fathers. Often, with the diagnosis came a sense of loss and shock (Burrell et al., 2017), followed by a grieving process to redefine hopes and expectations (Mitchell & Lashewicz, 2015; Keller et al., 2014). One study found that fathers had to learn to “reconstruct” their understanding of fathering (Shave & Lashewicz, 2016). Hannon (2014) found that fathers had to learn to communicate in different ways with their children with autism but found satisfaction when they were successful.

In one study, it was discovered that a fundamental aspect of strengthening the father and child’s relationship was through “interaction/communication” (Donaldson et al., 2011, p. 202). Along with altering expectations, fathers learned to change perspectives. When summarizing the experiences of fathers who have children with autism, Burrell et al. (2017) stated that fathers learned to alter their perspective as they realized that they could not change their circumstances. Having a new perspective offered these fathers a way to reflect on the positive aspects of raising a child with autism. Altering expectations and perspectives can help fathers to accept the condition of autism, which can be an important coping strategy for fathers (Burrell et al., 2017; Hannon, 2014). In the theory of absenting while the fathers attempted to resolve their concern for the future, they learned to alter expectations and celebrate small success in their children.

Many examples in social media refer to fathers who are sharing their experiences, speaking out, and creating educational and job opportunities for children with autism. As a therapist, McCoy, one of the authors, has personally worked for two men who created schools for children with autism because they were not satisfied with their community’s educational options. They saw that not only could they help their own child have a brighter future through giving him or her an improved educational opportunity; they could help many other children with autism to have the same benefit.

These fathers’ process in trying to resolve their concern about absenting creates a tapestry of connection and growth. While the sample size in this study was small (10 fathers), all shared similar experiences. Each father cared deeply for his child and wanted what was best for him or her now and in the future. The concern about absenting continued to drive their current actions and, during the process, these fathers had transformed in ways that they had not anticipated. It is noteworthy that each father had found in the process something for which to be grateful and that many had expanded their desire beyond their own child to want to help others.

Suggestions for Further Research

Research on fathers of children with autism is limited, as mothers have been the chief focus of research and intervention (Donaldson et al., 2011; Keller et al., 2014; Meadan et al., 2015). Further research into the theory of absenting might expand the substantive area by interviewing fathers who are divorced, fathers of various races and cultures, fathers with daughters, fathers of older adult children with autism, and fathers with a greater range of financial means. These areas should be examined if they evolve from the data as directed by theoretical sampling.

Adding to the literature, this grounded theory study revealed the progression of fathers through the process associated with absenting. Further research into these areas might be helpful to broaden understanding of how fathers are coping with and resolving their concern about ultimately not being able to control their child’s future when they are no longer present.

Derived from the data from this study, researchers who seek to deepen the theory of absenting might consider the changing role of the fathers throughout the child’s life span, the importance of teaching independent living skills, better support and engagement of fathers in interventions, and exploration of how gratitude and helping others affects the psychological well-being of fathers.

Interviewing fathers and mothers together to identify similarities and differences could add depth to the theory of absenting. The theory of absenting may also apply to fathers of children with a wide range of disabilities and to fathers of children who are developing typically. Exploring the differences and similarities between fathers of children with various developmental disabilities and fathers of children with autism or children with typical development with regard to absenting could be insightful.

Clinical Implications

Clinical implications derived from the theory of absenting may include (a) involving fathers in treatment that supports fathers in recognizing where they are in the process associated with absenting, (b) recognizing the chronological stage of the child and concerns that might be associated with that stage, (c) empowering fathers to communicate and connect with their children, (d) supporting the balance of family relationships, and (e) focusing on the child’s independent life skills, talents, and potential job opportunities.

Actively involving fathers in interventions for their child can strengthen the father-child relationship, potentially reduce the mother’s stress, and empower fathers with skills to forge stronger family connections. Applying the theory of absenting could support fathers’ concerns about the future by providing solutions for independent living skills and job skills. As mentioned in this study and in the literature review, fathers are very interested in having their children gain independent living skills and potential employment skills, in addition to shared activities that increase connections and relationships. Independent living skills and job skills should be a strong focus in intervention and education so that persons with autism are given the most opportunities for their futures.

Being mindful of where the father is in his stage of the process associated with absenting can be helpful in intervention planning by the clinician. For example, when the child is newly diagnosed, the father may need resources to support his learning curve as he navigates help for his child. When his focus shifts to his family, the interventionist would be wise to recognize and support the balancing of family relationships. This may include bringing siblings into treatment sessions to support sibling relationships and/or helping parents to gain access to needed respite services. Fathers may need support in finding ways to cope with everyday challenges and with reimagining the future. Each clinician should keep in mind ways to support the mental health and development of the entire family when applying the theory of absenting.

The interests of children and fathers should be considered when planning and implementing interventions. This is an opportunity for occupational therapists to find shared occupations or activities that are therapeutic and meaningful for both the child and the father. In addition, relationship-based therapy such as DIR/Floortime (Greenspan et al., 1998) can be key in building and supporting a strong bond between the father and the child.

Limitations

The studies cited in the literature review represent diversity in global representation of what fathers of autism are experiencing. The reviewed studies were conducted in Africa, Canada, the United Kingdom, and the United States. While the fathers lived in many areas of the world, they generally expressed similar concerns and experiences. However, many authors have suggested a need for more racial diversity in research on fathers of children with autism. Racial, economic, and familial diversity were delimitations within this study. While demographic data were not collected in this grounded theory study, it is important to note that all of the fathers in this study were married and none reported significant financial struggles. All reported concerns about finances regarding their child’s future but did not report being currently impoverished. Both of these points are noted because fathers who are divorced may have different concerns and go through a different process from that of fathers who are married. Finances may also influence the process that fathers experience while raising a child with autism. An additional delimitation might be that, of the 10 fathers who were interviewed, only 3 had daughters. Interviewing more fathers of daughters might have added data to the study. Interviewing parents of adult children would be beneficial in understanding all chronological stages associated with the theory of absenting. A strength of using grounded theory is that the theory can always be amended when new data are discovered.

Glaser and Strauss (1967) stated that a sound theory that “corresponds closely to the realities of an area will make sense and be understandable” (p. 239) to the substantive group. To ensure that the theory of absenting fit the substantive area of this study, half way into the conducting of interviews, the fathers were asked if they agreed with the developing theory of absenting. Each father agreed that his largest concern was the wellbeing of their child after they were no longer living. While the theory of absenting fits the substantive group of fathers, additional family members, and those working with children with autism were not interviewed and therefore could not comment the fit of the theory of absenting to fathers of children with autism.  Additional research from additional family members and those working with fathers of children with autism could add further dept to the theory of absenting.

Conclusion

Involvement by fathers in research and clinical practice will enrich the study of support for the child with autism. As the theory of absenting reveals, growing interest and focus on fathers can be a support and strength to the whole family system. With the understanding of the process associated with absenting, clinicians can be sensitive to the concerns of fathers and be informed on how to prepare the child with autism to live life as independently as possible. Facing the future, the resolution of absenting should be considered while developing treatment planning when working with fathers. The three categories to consider are preparing financially, preparing for the future life of the child with autism, and preparing the child to live life to the fullest. While clinicians may not be actively engaged in helping fathers to prepare financially for their child’s future, being mindful of the financial burden of autism is important. As the theory of absenting clearly reveals, the fathers’ main concern focuses on the future adult life of their offspring. To support fathers, clinicians should start working on independent living skills to help the child with autism to develop employment skills as early as possible. It is vital that clinicians and researchers find ways to collaborate with fathers to support young adults with autism to contribute to their community through job opportunities and/or volunteer opportunities to enrich their lives and the lives of others. This will in turn support fathers in their process. It is hoped that this theory will be helpful to families who are beginning the journey of parenting a child with autism, as well as to clinicians who seek to support families along the way. Classic grounded theory methodology was an exciting methodology that granted flexibility and creativity to follow the data and gain insights into autism.

References

Baio, J., Wiggins, L., Christensen, D., Maenner, M., Daniels, J., Warren, Z., Kurzius-Spencer, M., Zahorodny, W., Robinson Rosenberg, C., White, T., Durkin, M. S., Imm, P., Nikolaou, L., Yeargin-Allsopp, M., Lee, L. C., Harrington, R., Lopez, M., Fitzgerald, R. T., Hewitt, A., Pettygrove, S., Constantino, J. N., Vehorn, A., Shenouda, J., Hall-Lande, J., Van Naarden Braun, K., & Dowling, N. F. (2018). Prevalence of autism spectrum disorders among children aged 8 years. MMWR Surveillance Summaries, 67(6), 1-23. https://doi.org/10.15585/mmwr.ss6706a1

Burrell, A., Ives, J., & Unwin, G. (2017). The experience of fathers who have offspring with autism spectrum disorder. Journal of Autism Developmental Disorders, 47, 1135-1141.

Christensen, D. L., Bilder, D. A., Zahorodny, W., Pettygrove, S, Durkin, M. S., Fitzgerald, R. T., Rice, C., Kurzius-Spencer, M., Baio, J., & Yeargin-Allsopp, M. (2016). Prevalence and characteristics of autism spectrum disorder among 4-year-old children in the Autism and Developmental Disabilities Monitoring Network. Journal of Developmental & Behavioral Pediatrics, 37(1), 1-8. https://doi.org/10.1097/DBP.0000000000000235

Dardas, L. A., & Ahmad, M. M. (2015). For fathers raising children with autism, do coping strategies mediate or moderate the relationship between parenting stress and quality of life? Research in Developmental Disabilities, 36, 620-629. https://doi.org/fgul.idm.oclc.org/10.1016/j.ridd.2014.10.047

Davys, D., Mitchell, M., & Martin, R. (2017). Fathers of adults who have a learning disability: Roles, needs and concerns. British Journal of Learning Disabilities, 45, 266-273. https://doi.org/10.1111/bld.12205

Donaldson, S. O., Elder, J. H., Self, E. H., & Christie, M. B. (2011). Fathers’ perceptions of their roles during in-home training for children with autism. Journal of Child and Adolescent Psychiatric Nursing, 24(4), 200-207.
https://doi.org/10.1111/j.1744-6171.2011.00300.x

Flippin, M., & Crais, E. (2011). The need for more effective father involvement in early autism intervention: A systematic review and recommendations. Journal of Early Intervention, 33(1), 24-50. https://doi.org/10.1177/1053815111400415

Glaser, B. G. (1978). Advances in the methodology of grounded theory: Theoretical sensitivity. Sociology Press.

Glaser, B. G. (1998). Doing grounded theory: Issues and discussions. Sociology Press.

Glaser, B. G., & Holton, J. (2005). Basic social processes. Grounded Theory Review: An International Journal, 3(4). http://groundedtheoryreview.com/2005/06/22/1533/

Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. Aldine.

Greenspan, S. I., Wieder, S., & Simons, R. (1998). The child with special needs: Encouraging intellectual and emotional growth. Da Capo Press.

Hannon, M. D., & Hannon, L. V. (2017). Fathers’ orientation to their children’s autism diagnosis: A grounded theory study. Journal of Autism and Developmental Disorders, 47, 2265-2274

Hock, R. M., Timm, T. M., & Ramisch, J. R. (2012). Parenting children with autism spectrum disorder: A crucible for couple relationships. Child & Family Social Work, 17, 406-415. https://doi.org/10.1111/j.1365-2206.2011.00794.x

Kanjilal, G. C. (2014). Absenting without leave (absconding) from a hospital for mentally subnormal patients. Journal of Mental Subnormality, 15(28), 11-20. https://doi.org/10.1179/bjms.1969.003

Keller, T., Ramisch, J., & Carolan, M. (2014). Relationships of children with autism spectrum disorders and their fathers. The Qualitative Report, 19(33), 1-15. https://nsuworks.nova.edu/tqr/vol19/iss33/2

Meadan, H., Stoner, J. B., & Angell, M. E. (2015). Fathers of children with autism: Perceived roles, responsibilities, and support needs. Early Child Development and Care, 185(10), 1678-1694. https://doi.org/10.1080/03004430.2015.1019876

Mitchell, J., & Lashewicz, B. (2016). More than a pal: The generative leisure work of fathers raising children with autism spectrum disorder. Fathering, 13(2), 130-145. http://doi.org/10.3149/fth.1302.130

O’Halloran, M., Sweeney, J., & Doody, O. (2013). Exploring fathers’ perceptions of parenting a child with Asperger’s syndrome. Journal of Intellectual Disabilities, 17(3), 198-213. https://doi.org/10.1177/1744629513494928

Pottas, A., & Pedro, A. (2016). Experiences of father carers of children with autism spectrum disorder: An exploratory study. Journal of Psychology in Africa, 26, 551-554. https://doi.org/10.1080/14330237.2016.1250426

Rosanhoff, M. (2014). Lifetime costs of autism average $1.4 million to $2.4 million. https://www.autismspeaks.org/site-wide/michael-rosanoff?page=3

Shave, K., & Lashewicz, B. (2016). Support needs of fathers of children with ASD: Individual, family, community and ideological influences. Journal of Applied Research in Intellectual Disabilities, 29, 495-507. https://doi.org/10.1111/jar.12204

Shiparo, J. (Host). (2018, January 8). The sexual assault epidemic no one talks about. All Things Considered [Radio broadcast episode]. https://www.npr.org/2018/01/08/570224090/the-sexual-assault-epidemic-no-one-
talks-about

Vacca, J. (2006). Parental perceptions of raising a child with a severe physical disability: Implications for mental health providers. Best Practices in Mental Health, 2(1), 59-73.

Vacca, J. (2013). The parenting process from the father’s perspective: Analysis of perceptions of fathers about raising their child with autism spectrum disorder. Best Practices in Mental Health, 9(2), 79-93.

 

Declaration of Conflicting Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding: The author(s) received no financial support for the research, authorship, and/or publication of this article.

© Kianna Marie McCoy and Susan Braude Stillman 2021

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