Abstract
For parents of children with an autism spectrum disorder (ASD), who have given their time and commitment to complete an education and have gained employment in a professional field, a career disruption can have profound effects. A qualitative methodology was used to answer the two research questions that anchored this study: (a) What is the impact of career disruption on career-oriented parents who transition to being the primary caregiver for a child with ASD? and (b) How do parents who become the primary caregivers cope with the disruption, delay, or forfeiture of their professional careers? Parent participants identified three phases: (a) the career disruption process, (b) the impact of career loss, and (c) the transition to personal significance. Discussion focuses on the impact of career disruption and the necessity of service providers to recognize and embrace the importance of parental advocacy.
Autism spectrum disorder (ASD) is the fastest growing category of developmental disabilities in the United States, with estimates indicating that 1 out of every 88 children born in the United States will be diagnosed with ASD by the age of 4 (Centers for Disease Control and Prevention, 2012). ASD is a multi-faceted, neurological, developmental disability that affects communication, behavior, and socialization. Adding to the complexity surrounding ASD is its description as an umbrella disorder, indicating that the characteristics associated with this disability can range along a spectrum from obvious but subtle (as is often the case with Asperger syndrome) to comprehensive and profoundly debilitating (as is the case with severe autism). As research and understanding have grown over the past generation, ASD is recognized as an increasingly prevalent disorder with far-reaching effects that have impact on many, including families, service providers and society (Joshi et al., 2010).
Parenting a child with ASD is quite labor-intensive, and numerous studies have documented the lengthy and highly demanding parenting process of consulting with numerous professionals to obtain a diagnosis and receive appropriate services (Goin-Kochel, Mackintosh, & Myers, 2006; Howlin & Asgharin, 1999; Howlin & Moore, 1997; Siklos & Kerns, 2006; Wiggins, Baio, & Rice, 2006; Young, Brewer, & Pattison, 2003). The impact of this intensive process is pervasive. In concert with family systems theory, when a child with a disability enters the family, all members of the family unit and all aspects of family functioning are affected (Turnbull, Turnbull, Erwin, & Soodak, 2006). Not surprisingly, recent meta-analysis has provided general acceptance that those families with a child with ASD experience higher levels of stress than more typical families (Hayes & Watson, 2012). The interplay of child care demands and parental employment is an area worthy of particular attention and concern. Finding affordable, quality child care for children with disabilities (such as ASD) so that both parents are able to continue full-time employment can be especially problematic (Rosenzweig, Brennan, Huffstutter, & Bradley, 2008).
Drawing from a survey of 326 families, Baker and Drapela (2010) found that mothers of children with ASD experienced pronounced levels of career disruption. Specifically, 60% of the mothers were unable to work outside the home because of the demands of caring for a child with ASD. In addition, among those 40% who remained employed, reduction in work hours, leaves of absence, and turning down promotion opportunities were noted as necessary adjustments and accommodations. The study also revealed that among two-parent households, the mother’s work was disproportionately affected.
Similarly, Cidav, Marcus, and Mandell (2012), using data from the 2002 to 2008 Medical Expenditure Panel Survey, found that mothers of children with ASD were 6% less likely to be employed than mothers of children without health limitations. Mothers of children with ASD worked less hours per week and earned, on average, 56% less than mothers of children with no health limitations and 35% less than mothers of children with health limitations other than ASD. Interestingly, the father’s rate of workplace participation was not significantly different across groups. This study underscored the financial burden of underemployment on families of children with ASD. It is typical for families in which both parents had career employment prior to the birth of their child with a disability to make the decision that one parent will end or disrupt their career to become the primary caregiver, while the other parent continues with their paid career (Rosenzweig et al., 2002). Needless to say, this decision is complex and difficult, and it is based primarily on level of pay, consistency of employment, and access to benefits that the employed parent is receiving (C. R. Stoner & Stoner, 2014).
Evidence suggests that career and job flexibility are central to the decision to retain or cease outside employment for parents of children with varying disabilities (Rosenzweig, Brennan, & Ogilvie, 2002). For example, women have consistently reported that they do not work because they are unable to find work that provided the flexibility and adaptability needed to meet the needs of their children (Freedman, Litchfield, & Warfield, 1995; Todd & Shearn, 1996). Not surprisingly, families with a child with ASD have been found to be 4 times as likely to quit, change their job, or not take a job at all as were commensurate parents with typically developing children (Montes & Halterman, 2008).
Among parents who remain actively employed, the case for underemployment is also evident. Underemployment is generally seen as accepting a job that is not commensurate with one’s level of education, training, and experience, often resulting in feelings of underutilization (possessing talents that are not called for or used on the job). Studies have found that parents of children with a serious emotional disorder attempted to find employment that was compatible with the demands of caregiving (Elnam & Cuskelly, 2002). However, this often required parents to engage in work that was quite different from their original career pursuits or educational training and to make work-related adjustments that ranged from part-time work to accepting underemployment (Rosenzweig et al., 2002).
Two important questions loom. First, what is the effect of transitioning from a full-time career to primary caregiver? Second, what is the impact of a disrupted career on the parent who assumes the primary caregiver role?
Some tangential indicators are available. For example, there is considerable evidence that the loss of one’s job is associated with an array of health and behavioral problems that include anxiety, lower self-esteem, relational conflicts, and depression (Blustein, 2006; Lucas, Clark, Georgellis, & Diener, 2004; Vinokur, Schul, Vuori, & Price, 2000). Evidence also indicates a positive relationship between the level of participation in paid employment and well-being for parents (mothers and fathers) of families of children with intellectual disabilities (Olsson & Hwang, 2006). In part, this may be due to a “buffering effect” that results from feeling involved and successful at work-related roles (Barnett & Hyde, 2001). Working enhances such critical needs as social support, access to relationships, feelings of competence, and more positive self-evaluations, as well as access to resources needed for survival (Blustein, 2008; Elnam & Cuskelly, 2002). Blustein (2008) offered an additional factor that working fulfills one’s need for self-determination—the feeling that “one is authoring the direction of one’s life” (Blustein, 2008, p. 234). Research has indicated that parents with a child with ASD certainly do not feel as if they are controlling or authoring the direction of their own life (e.g., J. B. Stoner et al., 2005).
Within this context, how does the decision to stay at home—to forfeit or delay a career for which one has prepared to become the primary caregiver—affect those parents? There is no research that has investigated this phenomenon, although it is becoming increasingly common in our society. The purpose of this study was to investigate the impact of shifting from a career focus to a caregiver focus on the parent who is the primary caregiver for a child with ASD. Two key research questions guided this study:
Method
Research Design
Qualitative research methodology was used to gain insight into the effect of parenting a child with ASD on career professionals. Specifically, the collective case study as described by Stake (2000), which involves the study of more than one case to “investigate a phenomenon, population, or general condition” (p. 437) was used and this allowed for comparison of the “personalized stories of several similar individuals” (Brantlinger, Jimenez, Klingner, Pugach, & Richardson, 2005, p. 197). This approach assumes that investigating a number of cases will lead to better comprehension and better theorizing. Miles and Huberman (1994) contended that studying multiple cases allows the researcher reassurance that the events in only one case are not “wholly idiosyncratic” (p. 172). Furthermore, studying multiple cases allowed an investigation of the processes and outcomes across all cases and a deeper understanding through more powerful descriptions and explanations.
Participants
Purposive sampling was used to “maximize opportunities for comparative analyses” (Strauss & Corbin, 1998, p. 211). The cases chosen for this study were based on the strategy of comparable case selection, which Miles and Huberman (1994) described as selecting “individuals, sites, or groups on the same relevant characteristics over time” (p. 28). Participants were purposefully recruited from parents who had children with ASD across various grade levels in schools from several school districts. This sampling methodology allowed maximum opportunities for comparable analysis (Strauss & Corbin, 1998). Institutional Review Board approval was obtained; a description of this study was sent along with a request for participation to various agencies connected with the autism community in a 250-mile radius (e.g., early childhood intervention centers, social service agencies, parent support groups), and the agencies were asked to distribute the request for participation. Participant criteria were that respondents be married, have a college degree, and have current employment in their career field or previously worked in their chosen field. Parents who were married and had professional careers were purposefully chosen as the perspectives of parents who had the ability to rely on another partner for financial support and could voluntarily decide to become the primary caregiver was necessary. Participants were eight married couples, or 16 individuals, and their perspectives of the effect of parenting a child with ASD on their career was obtained. See Table 1 for participant demographics.
Participant Demographics.
Interviews
Interviews can be “one of the most powerful ways in which we try to understand our fellow human beings” (Fontana & Frey, 2000, p. 645). Face-to-face interviews were conducted to explore participant responses while maintaining a feeling of openness (Kvale, 1996). Semi-structured interview questions, which were broad open-ended questions that allowed the interviewer to probe for further information, elaboration, or clarification of participant responses were used. See the appendix for the interview questions. Each author purposely interviewed participants of the same gender as the interviewer in an attempt to increase the ability to relate to the interviewer and foster a feeling of openness. The interviews occurred in the participants’ homes or at places the participants designated (e.g., coffee shops, our offices, or libraries) and ranged in length from 60 to 90 min. Each interview was audiotaped and transcribed verbatim to facilitate subsequent data analysis.
Data Analysis
Cross-case analysis, as described by Miles and Huberman (1994), was used to analyze our data. Cross-case analysis involved analyzing each individual case as a whole entity followed by a comparative analysis of all the cases. Individual cases were analyzed separately by each researcher using line-by-line coding. Once both authors had individually coded each interview line-by-line, the line-by-line coding was combined and categories for each case were developed. This method required the researchers to analyze each individual case, using a flexible standard of variables or categories (Coffey & Atkinson, 1992) and required that they continually return to the data (Charmaz, 2000).
A qualitative data management software program, NVivo9™ (Richards, 2002), was used to organize the data. Specifically, the use of NVivo9™ offered the tools for “recording and linking ideas and exploring and searching for patterns of data” (Richards, 2002, p. 11). Categories, utilizing the constant comparative method, were then compared across cases and refined, expanded, or deleted. The constant comparative method has been described as a major technique in grounded theory (Charmaz, 2000) and is a rigorous method that involves comparing different people, data, incidents, and categories. Use of the constant comparative method yielded a rich description of the effect of parenting a child with ASD on each participant’s career.
Data analysis was confirmed using triangulation. Triangulation is the process of corroborating evidence from different individuals, different types of data, and/or different methods of data collection (Creswell, 2002). Each case in this study was comprised of a mother and father, who were interviewed separately. Confirmability was achieved when the mother and father provided the researcher with the same information. In addition, common themes that occurred across cases added further confirmability to the findings. Differences or discrepancies between married participants or between cases were resolved by returning to the data and/or contacting the participants for further clarification.
Findings
Our analysis is segmented into three phases or categories. First, the data offer an in-depth overview of the stress-laden process that leads parents to a decision that one partner will relinquish his or her career to assume the role of the primary caregiver for the child(ren) with ASD. This has been labeled the “career disruption process.” There is often a fine line between perceptions of career disruption and complete career dissolution. The former term was chosen as many participants in the study hoped to pursue their careers in the future, even as they admitted that these hopes seemed rather remote and unlikely.
Second, the data indicate a four-phased model of the “impact” of career disruption. Here, issues of loss and grieving, isolation, underutilization, and the ameliorating effects of support are examined. Third, the transition in personal significance and life meaning that our participants experienced as their primary caregiver roles evolved is addressed. Finally, a discussion of these themes, exemplified with direct quotes from participants, is presented.
Phase I: The Career Disruption Process
Parents experienced an interrelated process of struggling to obtain a diagnosis, struggling to secure needed services, and coming to an eventual decision that one parent would assume the role of primary caregiver. The intensity of this process, which typically took between 6 and 18 months, cannot be overstated.
Diagnosis
Each one of the participants spoke of the trying process of obtaining a diagnosis for their child—a process prompted by developmental comparisons with other children and a personal sense that “something just isn’t right.” This process included going from one professional to the next and either being told that their parental instinct that something was wrong with their child was not valid or being referred to another professional. Not surprisingly, this process was emotionally and financially draining.
I made probably 30 phone calls a day for nearly a month just trying to find people. Who and where do we go? And what do we do? I mean that was probably it, kind of hunting them down. And we were desperate. Life was really difficult. So we were trying to figure out what to do. But you know a mother’s intuition says a lot . . . You know I got the typical “boys develop later—they talk later.” And I even got the “Einstein didn’t talk until he was 4 or 5.” Those comments were almost hurtful because I know my son, and I knew that something was wrong, and let’s call a spade a spade.
In many ways, parents noted that finally obtaining the ASD diagnosis was a relief. Yet, the diagnosis also carried a dramatic emotional punch as exemplified by this quote, “Emotionally, for me, when I got the diagnosis, my first thought was, my dreams for him will never be fulfilled. It was fairly short lived, but it was there.”
Services
Once a diagnosis had been obtained, parents focused on obtaining services to meet the needs of their children. They educated themselves about this nuanced and at times baffling disorder. They sought out therapies and therapists who might help their child, and they investigated both public and private schools. During this time, parents felt a “sense of urgency” that time was passing, that they did not know what to do, and that every decision they made might be the one that either facilitated their child’s progress or hindered it. Parents defined their emotions in slightly different terms, but the sense of urgency and impact was experienced by all, as exemplified by the following parents’ quotes.
You’re doing what you’re supposed to be doing, and it’s not working . . . It’s like being trapped in a car. It’s sinking. You gotta get out. But you can’t open the door. It’s literally the same experience. So I don’t know what to do. You just struggle through every day.”
Another parent clearly described that his sense of panic did not abate as his child aged.
Panic—they think it’s something that happens very immediately, in response to a situation. But I’m discovering panic can be a very long drawn-out process, and that’s what we’re experiencing with my daughter . . . There’s a sense of panic that’s rising in us . . . It’s not just a sense of urgency. It becomes more emotional. You’re doing homework with your kid, and you’re screaming inside, “Oh my God. This is it. This is what it’s going to be like. If she can’t get through homework in fourth grade, she’s never gonna be able to hold down a job.” This is it . . .
Career decision
All couples in this study had professional careers prior to the birth of their child with ASD. Due to the labor-intensive nature of parenting a child with ASD and the lack of quality child care for very young children with ASD, parents made a decision about their careers. Table 1 provides the career paths of the participants. It is important to note that several of the families tried to continue having both parents work when their child was young, but of these, only one family continued to have both parents pursue their careers.
Each family spoke of the difficult decision to either leave or disrupt one of their careers. This decision was not easy as there were many factors affecting it, such as finances, consistency of employment, health care benefits, flexibility of career, and the overarching primary component of what was best for their child with ASD.
And you know, it [various therapies] is a lot of money. The whole thing is a lot of money. And a lot of times things aren’t covered under health care. I mean it’s really a full-time job in itself. Being parents is a full-time job but finding the therapies and schools. It’s a double dose.
Two of the parents who disrupted their career were males and the primary reason for their decision was flexibility and lack of consistent employment. Both of them were career artists with exciting and developing careers, having had multiple showings and commissions. But their careers were deemed more flexible than their wives, not as financially stable, and with little to no benefits, including health care. Once again, the decision hinged on what was best for the child with ASD. One dad who provided primary care, when asked whether he was comfortable in the primary caregiver role, commented,
Not really, never have been. Not because of any way that I think the world should run. It just wasn’t really—it was never mentally stimulating. Drudgery taking care of the kids but it needed to be done . . . and I had the flexibility.
Consequently for these two families, the decision was for the father to disrupt their careers and for their spouses to continue working. One father explained the decision as,
She had a regular job and she had the promise of return. Insurance was great. And because I had a lot of flexibility in my work schedule, I was a better candidate. And my disposition was probably more like him [son with ASD] in a lot of ways too. But the decision was financial, probably more than anything else.
In short, primary caregivers indicated that they quit work not because they wanted to do so, but because there were no other practical alternatives. In all cases, the spouse with the highest and most consistent stream of earnings became the primary wage earner, and the other spouse assumed the role of the primary caregiver. Overwhelmingly, finances were the pivotal factor in the decision of which spouse became the primary caregiver. As one participant indicated, family finances, when the couple was beginning their family life, was “a huge struggle, huge.”
Phase II: The Impact of Career Loss
The impact of career loss had both financial and emotional effects. Financially, the family unit experienced a loss of income. In part, this decision was affected by the complications and financial trade-offs of child care. As one father noted, “There wasn’t enough money with her (spouse) working to pay off the downside of having kids in child care.” Furthermore, the complications of arranging and attending therapies and doctor’s appointments demanded full-time attention from one parent. This was especially necessary for parents with young children and/or those who had recently received a diagnosis of ASD. Emotionally, career loss affected the caregiver in two ways (a) grief over career loss and (b) a sense of isolation and underutilization.
Grieving a lost career
The primary caregivers clearly felt the sting of losing the career dimension of their lives. In their newly defined world, everything centered on their children with ASD and attending to the children’s needs. A palatable sense of loss—a loss of self—was described. In a sense, the primary caregiving parent was grieving the loss of career, perhaps not initially in the child’s early years as they were so immersed in caregiving, but as time passed, services were obtained for the child, and adjustments were made, and the primary caregiver spoke of realizing what had been lost; the professional careers for which they had trained, careers that carried both success and enjoyment. These careers included nursing, teaching, artistry, and business.
The sense of grief over the loss of a career was recognized and expressed by both parents. For example, one mother who was the primary caregiver noted that she liked her job and her profession as a nurse. In her own words, she noted that she and her husband “are grieving the life of what we thought would be.” She grieved for her son and what he “will not be,” for her family and what it “will not be,” and for “the career she will never have.” Her husband, who was the sole wage earner, was quite sensitive to her sense of loss: “It’s hard on her. She’s a labor and delivery nurse and loved it . . . I think in her eyes, even though I’m going to work, I’m getting away. And I think that’s one thing she misses.”
Sense of isolation and loneliness
The overwhelming emotional impact of disrupted careers among primary caregivers was their sense of isolation and accompanying loneliness. As one parent succinctly described her loss of career, “It is extremely isolating. It is extremely lonely.” Three factors were apparent in affecting the outcome of perceived isolation: (a) primary caregiver parents felt confined to the home or other limited arenas as dictated by the child’s needs (such as therapy sessions, doctor’s visits, etc.); (b) primary caregiver parents were removed from the beneficial aspects of interacting with their co-workers; and (c) primary caregiver parents experienced an acceptance or acquiescence that their isolation was a logical and legitimate consequence of not contributing financially to the family. Importantly, an awareness and acceptance of this situation did not translate into comfort or satisfaction with the situation.
Although participant numbers were limited, the fathers who were primary caregivers experienced more isolation than their female counterparts. In part, this occurred because fathers did not actively seek out support groups or call other parents who had children with ASD, while mothers were more likely to pursue these routes of support.
Sense of underutilization
Once again, it must be emphasized that all of the parental participants were highly educated and had active, professional careers prior to the birth of their child with ASD. As such, they noted that they derived personal meaning and significance from their work and the contributions they experienced through their career. Of course, that sense of significance was substantially depleted when the career was disrupted.
The impact and power of work significance appeared in rather dramatic ways. For example, one father, an accomplished artist, spoke specifically about the necessity of finding some way to continue being an artist.
I’m just wired this way. It is what I was born to do. Some people are athletes, some read all the time, some are gifted musicians, and this [art] is what I do that makes me feel the most like myself. And when I go for very long and I’m not doing it [art], I feel like I can’t get air. It is more than work.
This particular father had rented studio space in an artist cooperative while his son was at school and this worked well for him. “It was very empowering for me, when I had a place separate than home. I never had to worry about interruptions. It was entirely indulgent.” However, once his son had graduated from high school and transitioned into adult life he [the son with ASD] was working two part-time jobs, and there was an issue of caregiving during the time his son was at home. The father described his choice as follows:
So we had about a 3-hour period there before he [son with ASD] went to work when he was going to be home alone and I was pretty worried about him. We went through a year of “I don’t wanna live anymore” and life was tough. So I left my studio. We had a little garage out in the backyard and I resisted for years ’cause I just had a feeling and I was afraid. And that was a little over 3 years ago we did that. And my career has flushed.
Other parents felt the loss of career in dramatic and “profoundly negative” ways, referring to careers that were destroyed and “tanked.” For example, one mother stated,
Well, obviously I don’t have a work life anymore. I mean it was necessary [dissolving her career]. It’s one of those things you struggle with because I’ve always worked, ever since I was fifteen, and even when I was in high school. So it was really hard for me to go from working to staying at home all the time.
Understandably, this occurred because careers were so much a part of their lives and their identity prior to the birth of their child with ASD. These parents took a realistic perspective, noting that life situations dictated a change of course. All noted concern and love for their children, and all explained that their career disruption made the most sense for their family.
Indeed, many of the parent participants noted an array of positive outcomes from being the primary caregiver, including special time and closeness with their children. Yet, the debilitating career impact was clear as one parent stated, “But everything comes with a price. Sometimes I think this [staying at home] is my price for indulging in my work for so many years; some sort of karma or something. I don’t know, but it’s been difficult.” Interestingly, all of the younger primary caregivers hoped to resume their careers once their children were older. However, all recognized that this was dependent on their children’s progress and that a return to their career may or may not play out.
It must be stressed that while the primary caregivers were devoted to their children, they intentionally made the decision to leave their career based on their love for their child and their desire to do everything they could to help their child. But this decision did affect them all negatively.
Some primary caregivers also spoke of the hope that they might return to their career at some point. In fact, some primary caregiver parents were able to return to their work on a part-time basis or were able to obtain a job with flexible hours as their children aged and were in school. For example, one of our participants, a former full-time nurse, found work at a primary care center on the weekends when her husband was available for child care. Interestingly, and perhaps due to their years of focused attention as primary caregivers, as these parents returned to part-time work, their awareness and sense of obligation to meet the needs of their children was always a central, hovering presence.
Ameliorating effect of support
Primary caregivers found support through three main venues: (a) enhanced sensitivity and consideration from their employed parental partner, (b) extended family support, and (c) support from autism support groups. However, it should be noted that participants in this study rarely received support from all three areas.
Parental partner
In all cases primary caregiver parents spoke of the critical supportive role displayed by their working parental partner. This support came in three fundamental ways: (a) working parents understood the need to be available (usually by phone) to occasionally offer caregivers an opportunity to connect and emote; (b) working parents were careful to leave work promptly to allow for schedule consistency and caregiver relief; and most dramatically (c) working parents would leave their work to be with the primary caregiver parent during inevitable but unpredictable “emergency” situations (such as child meltdowns).
All three aspects of partner support were seen as important. However, the value of emergency support was absolutely essential and critical, even though it was sought and needed infrequently. One working parent described this form of support as the spouse’s “911 call.” It is “a phone call that says, ‘Come now. I have to leave before something bad happens.’” One father colorfully noted, “She said, ‘I need you now—come home . . . I’m going to run away, and I can’t take it anymore . . .’ She was pretty clear. I had to drop everything and get home.”
Extended family support
Extended family support was an especially strong element of support if it was present. However, many of the participants spoke of the lack of family understanding of ASD and the reluctance of the family to engage with the child with ASD. In these cases, parents felt even more isolated. One of the participants, speaking with obvious emotion, described the reaction from her extended family, “They [extended family] were awful. They just didn’t believe that anything was wrong with her [daughter with ASD]. It [daughter’s behavior] was our parenting. We were great parents. It was very difficult.”
Interestingly, when family support was present and available it was seen as being beneficial to all, including those who gave the support. Parents were immensely grateful for help from grandparents and siblings who supported them through child care. This help permitted the primary caregiver parent some time so they could run errands, get to their own appointments, or simply take a much-needed break. One parent, who had a grandparent living with them, explained his gratitude for that support. “Her mother [his mother-in-law] is a presence in our home and although her job is not an official caregiver, she has certainly been a force in their lives as well. And I am grateful for that.”
Family support also included immediate responses when there was a crisis. If family support was available during a crisis period, parents experienced less stress, knowing that someone else could help respond to the crisis. One primary caregiver explained the family’s reliance on her mother, “We have grandma, who kind of picks up all the pieces when the rest of us are running around doing other things.” In short, when it was available, the presence of family support directly ameliorated the stress of parenting a child with ASD.
Parent support groups
Finally, parent support groups were beneficial to many of the primary caregiving parents in this study. The support groups that seemed to meet the parent needs were those that focused on daily issues, offered comfort and understanding of parenting a child with ASD, and provided a place where a parent was not judged for expressing their parental frustrations. For example, one parent spoke of the support she received through support groups and other parents; “So it was a pretty big thing [the diagnosis] but we were just so blessed, lucky that we got connected to some really solid people to start with. They saved our sanity and lives.” While support groups that focused on therapies, treatments, or finding a cure for ASD were valued, they were not identified as meeting the emotional needs of the parents who were the primary caregivers.
Phase III: A Transition of Personal Significance
Recall that parent participants whose children were of various ages and differing levels of intensity on the ASD continuum were purposefully selected. The impact of this selection decision was most telling in this area of the study. Specifically, some primary caregivers, who had older children who were not as severely affected by ASD, were able to redefine or reshape their careers, moving in new and different directions but still utilizing the array of skills that were the foundation of their earlier career success.
The parents who had younger children with ASD typically spoke of their “sense of urgency” to obtain essential services for their child. Thrust into a “new world” they faced a steep learning curve that led to actions and advocacy that benefitted their children. Here, parents had to learn a new vocabulary, interact with new professionals, and navigate the culture of special education. In response, the parents in this study reported immersing themselves in reading and gathering information aimed at understanding their role in the educational development of their children. In essence, parents became their child’s advocate, a process that included (a) learning all they could about ASD, (b) asking the right questions of the right people, and (c) obtaining and coordinating services. This range of advocacy activities was immensely time-consuming. For example, one parent spoke of the intensity of coordinating therapies from different agencies for her young child.
We got a coordinator, and she would set us up with therapists. A lot of times, she’d say “OK, you have your choices but this is the shortest list.” So we ended up with an independent occupational therapist and an agency for speech therapy and then the feeding therapies at another agency. So it’s all through different places. But I definitely, I don’t know how I could have been able to do everything I’ve done for him and be working at the same time.
The parents who had older children with ASD were able to provide a retrospective of how their lives had changed after a significant time period of parenting. These parents, who had been their children’s primary caregiver for a substantial period of time, described a shift in personal significance that was positive and appeared to give them a new sense of meaning.
Consider the example of Brenda, a mother whose career was “completely dictated” by her family situation. Having held an executive position prior to the birth of her children, Brenda left a promising and progressive career. However, she thrust herself into a new career, one of dedicated and focused advocacy for children with ASD. She explained,
But one of the things we [Brenda and her husband] always felt really strongly about is that because I’m comfortable talking to large groups of people, and not many people are, that it’s kind of one of those, I don’t know, we kind of consider it a calling. And I need to do that because other parents can’t. And I can tell you what that experience [parenting a child with ASD] is like and I can connect it. And then I get the opportunity to see an educational setting and bridging those two groups [parents and educators] has turned out to be a really wonderful and important thing.
Today, with her children now teenagers and entering adulthood, Brenda works as a nationally recognized autism consultant. In this role she travels, works with parents, conducts workshops, and serves as an advocate for rights of individuals with ASD. Importantly, her new career provides her with passion, meaning, and the capacity to help others, while assuring the flexibility still needed for her children. Utilizing many of the skills that had provided earlier career success, Brenda transitioned her talents into a new area of personal significance. She commented on her consulting and speaking activities,
And I didn’t realize it [her first presentation] would be like 1,000 people, and then they asked me to come back 2 years later, and then they asked me to come back the next year. So you do get some really nice personal validation from it.
Another mother, Amy, provided a similar story. As her children grew, she began volunteering for a local non-profit organization. Today, with her children in their teens, she has assumed the presidency of the board for the organization. The position allows Amy to use her leadership talents, engage her passion for mental health advocacy, while still maintaining needed flexibility to do much of her work from home.
Both Brenda and Amy were full-time primary caregivers during the intense early years of their children’s lives. They did not return to work until their children had relatively stable lives and were in school or programs that provided supervised activities during the day. Importantly, even at this point in their children’s lives, these women required employment that offered them the flexibility they still needed to respond to their children’s needs and be available when their children needed them.
Although Brenda and Amy offered dramatic examples, all of the parents in this study spoke of the importance of their advocacy role, even if it was limited or focused on advocating for their own children with ASD. Their advocacy took many forms, including advocating for an accurate diagnosis, advocating for essential and life-altering services, or advocating for appropriate and acceptable employment opportunities as their children aged into early adulthood.
Participants reported that their advocacy gave them energy, and it gave them a sense of their own significance. This was especially true when their advocacy work was consistent with their training, skills, education, and perhaps most importantly, their passion for meeting the needs of their children. Parental work as advocates became both work and career; regardless of whether pay was involved. In these ways advocacy was beneficial to them personally and the benefits extended to their children with ASD, who were their prime focus.
Discussion
All members of the family unit are affected by the presence of a child with ASD. However, as this study has shown, disrupting one’s career due to meeting the parenting needs of a child with ASD has profound effects on the primary caregiving parent. The description of the emotional impact of the career disruption process coincides with and reinforces the cyclical grieving model, originally proposed by Blaska (1998). In addition, consistent with previous research, each time parents were confronted with the awareness that their hopes and dreams for their family were dashed, a renewed sense of desperation and grieving arose (Cameron, Snowdon, & Orr, 1992; Childs, 1985; Fraley, 1990). No doubt, this came from a growing realization of diminishing chances for normalcy (Blaska, 1998).
The emotional and psychological value of work was strikingly apparent among parents who disrupted their careers. Although their career decision was voluntary, it was dictated by circumstances beyond their control rather than personal preference. Work wields the potential for enhancing one’s personal significance and meaning as well as one’s sense of self-determination by providing opportunities for shaping the course of one’s life (Blustein, 2008). As their career was unexpectedly and suddenly jolted from its expected path, parental feelings of loss were exacerbated. Consequently, not only were parents dealing with the loss of not having a typically developing child, they were also struggling with the loss of their career, an integral part of their self-identity.
In addition, parents actively attempted to regain some control over their lives. In this vein and supported by previous research (e.g., J. B. Stoner et al., 2005), parents (especially those with young children) are launched into a “complicated world of treatment choices” (Solomon & Chung, 2012, p. 255) and actively engaged in extensive self-education regarding services and meeting the educational and medical needs of their children. As such, service providers should recognize that primary caregiver parents are likely to be well-informed consumers who generally want providers to appreciate and solicit their input and be willing to accept them as part of their child’s team whose fundamental interest is the child with ASD.
The primary caregiver parents found support from their spouse, extended family, and parent support groups. However, it is important to note that participants also coped through actions that they perceived benefitted their children with ASD. It is vital to note that this action-oriented behavior was a positive coping mechanism for participants and for their children. While authors (e.g., Watson, Hayes, Coons, & Radford-Paz, 2013) have discussed advocacy that benefits the child, it can be asserted that parental advocacy benefits the parent as well and is a positive form of coping.
Service providers, in all fields, need to be sensitive to what a diagnosis of ASD entails. First, quite tangibly, parents experience a loss of income at times when financial concerns (both present and future) are critical and demanding. Second, the primary caregiving parents most likely have lost meaningful social interactions at a time when relationships could be a source of emotional support. Third, primary caregiving parents experienced a deep sense of isolation, loneliness, and diminished significance at a time when they were quite vulnerable.
In essence, at a time when parents feel a loss of control, the loss of their career is exacerbated. Service providers should engage parents with sensitivity, understanding, and an awareness of the raw vulnerabilities that are at play. As such, service providers may find it advantageous to view parental behaviors, emotional responses, and even seemingly unrealistic advocacy demands through a wider lens and more informed perspective.
In some cases, service providers have tacitly reinforced a parental “squeaky wheel” model of action. Therefore, parents may be conditioned to shun timidity and restraint in favor of a willingness to “fight” for their child. In part, these actions are driven by the aforementioned parental belief that each day a child with ASD misses out on needed services is a day “lost.”
Although both parents assume responsibility in this “fight for our child” advocacy, it was most pronounced among the primary caregiver parents. We believe this, at least in part occurred, because caregiving parents recognized their advocacy for their child was vital. However, the advocacy may also enhance the significance and meaning of the new parental life that is being constructed. In many ways, advocacy and its positive outcomes were part of a new identity and personal significance. This role of personal significance, the perception that “I count; I have importance; and want to make a difference,” cannot be overstated.
Once again, service providers are encouraged to be aware of and sensitive to these parental perspectives. Furthermore, easy and negative parent labels (such as “troublemaker” or the proverbial “difficult parent”) should be eschewed in favor of a more open and enlightened view of all that is prevalent in these parents’ lives. As service providers, it is most helpful when parents are understood and recognized, not only for their expertise on their child, but also because it is through their advocacy that they gain a sense of control. Advocacy can be a very positive coping mechanism when parents are trying to gain some semblance of control in their lives.
Limitations and Scope of the Study
Apart from the typical limitations of generalizability that could be associated with all qualitative investigations, an additional consideration must once again be noted. The participants, by design, were highly educated, career-oriented professionals and could be considered advantaged. Accordingly, their access to information, flexibility, and income and benefits may not be consistent with those from differing backgrounds and life situations. Indeed, parents in our study were able to make informed employment decisions with the stay-at-home option precisely because of the financial foundation that the employed parent provided. These parents certainly do not represent the vast array of life situations that all parents of children with ASD face and additional study of parents from differing situations is warranted. In addition, participants were recruited from one Midwestern state and resided within a 250-mile radius. However, there was a concerted effort to interview participants with children of varying ages to gain a more comprehensive perspective of the effect of parenting a child with ASD on the primary caregiver who was a career-oriented professional.
This study has attempted to add to understanding the complex situations and adjustments that parents of children with ASD make. Furthermore, a unique glimpse into the psychological and emotional undertones that affect a unique population of parents has been offered. However, many issues remain. Most notable is the selective nature of the participants. As ASD is such an individualized disorder, the range of parental responses is affected by idiosyncratic circumstances that include (a) severity of disorder, (b) family financial outlook, (c) availability of support, (d) parental relationships, and (e) parent background and personality, to name only a few. Consequently, investigating the effect on parents who are not as advantaged and/or do not have a career focus may yield different findings. We would also recommend further, in-depth investigation on the effect of career disruption on fathers who become primary caregivers and on advocacy of parents of children with ASD. Extension of our knowledge on these two topics would provide further insight on developing practices that best address family needs and would be most helpful for all professionals dedicated to improving the lives and education of children with ASD and their families.
Footnotes
Appendix
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.