Coping Strategies of Parents Whose Children Have Autism Spectrum Disorder: A Qualitative Study

Abstract

A plethora of research indicates that parents whose children have Autism Spectrum Disorder (ASD) experience high parental stress associated with a variety of behavioral and cognitive autism-related symptoms. Given the difficult and stressful situations in which parents find themselves when managing and dealing with their children’s autism-related symptoms, research has shown that parents are more likely to develop coping strategies in the face of parental stressors. However, empirical evidence that shows in-depth and rich narratives of parental personal coping strategies which they may develop to cope with their children’s diagnosis effectively has fallen short. This qualitative study adds to the existing research on the types of parental coping strategies, which parents developed from the moment they learned that their child has ASD to seeking assistance and help. In this study, six parents whose children have been diagnosed with ASD were interviewed about their experiences that reveal the processes of developing personal coping strategies as well as the types of the developed coping strategies. A theme-based analysis revealed that parents developed diagnosis-related coping to overcome suspicion, personality and emotional coping, action-oriented coping, coping through beliefs and values, coping through self-directed learning about ASD, through self-care and spirituality, and finally, through avoidance coping. In the final sections, implications of the findings and future directions for research are discussed.

Keywords: Autism Spectrum disorder. Qualitative research

Introduction

It has been argued that family members share several characteristics with health care providers, teachers, and other school staff members because they all are negatively affected by the difficulties and worries related to the provision of services and caring for a child who has been diagnosed with ASD) (Luther, Canham, & Cureton, 2005). Unfortunately, insufficient attention has been given to parents’ psychological response to cope with their child’s diagnosis of ASD (Blackledge & Hayes, 2006). ASD has huge consequences on households and augments family stress level (Cassidy, McConkey, Truesdale-Kennedy, & Levin, 2008). Research suggests that the parents of children who have been diagnosed with ASD experience more negative emotions  than the parents of children who have been diagnosed with other disabilities in that they experience less community help and occasionally have less optimistic views of their own children (Cuzzocrea, Murdaca, Costa, Filippello, & Larcan, (2016). Furthermore, there are a lot of factors that contribute to parental stress. Davis and Kiang (2018) found that stress significantly predicts well-being (low stress high well-being) of mothers whose children have autism. Pastor-Cerezuela, Inmaculada , Tárraga-Mínguez, and Miguel Navarro-Peña (2016) found that severe autism-related symptoms, such as high hyperactivity and distractibility levels in children, contribute to parental stress as well. As far as the scope of the impact of stress is concerned, there is indication to suggest that the effect of ASD is prevalent to the point that it causes distress within communities whose families could be hyper vigilant. As a result, parents can feel more trauma and feel abandoned by their communities (Alvarez & Reid, 1999).

Two types of family stressors have been identified that are chronic stressors and life events. Chronic Stressors includes long-term problems, fights, and intimidation that people face in their daily lives (Cohen, Kessler, & Gordon, 1997). Examples of chronic stressors are role stressors. In the occupational health research, role stressors comprise role ambiguity, role conflict, and role overload (Gilboa, Shirom, Fried, & Cooper, 2008). Researchers have often concluded that out of the three role stressors, role ambiguity and conflict have stronger relationships with various employee reactions, such as job gratification, organizational obligation, emotional tiredness, and tension and anxiety, than role overload (Fried, Shirom, Gilboa, & Cooper 2008). Generally, role stressors are related to family, caregiving, romantic relationships, and work. It was discussed that the consequences of repetitive stressors may be mostly severe when they occur within major social domains, such as work or family (Pearlin, 1989). Ambient stressors are loneliness, finances, health, and neighborhood and are related life domains. Life events such as matrimonial life or death, in contrast to chronic stressors, are discrete and observable events with concrete beginnings and endings (Wheaton, 1999). They may be tied to the life cycle and associated transitions such matrimonial life, retreat from work, and death of one’s spouse (Holmes & Rahe, 1967).

In this same light, Samadi, McConkey, and Kelly (2013) argued that for parents and families, it is devastating to raise a child with ASD. Consequently, it is important that parents learn to cope with their child’s diagnosis of ASD. Much research has found that behavioral issues stand as the most essential predictors of parental stress in children with intellectual disabilities (Baker, Blacher, Crnic,  & Edelbrock, 2002; (Baker, McIntyre, Blacher, Crnic, Edelbrock, Law, 2003; Osmond, Seltzer, Krauss, & Hong, 2003). Behavioral problems have been investigated and reported in children and in adolescents with ASD (Gadow, DeVincent, & Azizian, 2004; Tonge and Einfeld, 2003). Because parents have to deal with their children’s’ behavioral symptoms, they are more likely to develop coping techniques in the face of the intricate ASD-related stressors (Factor, Swain, & Scarpa, 2018).  

There is substantial research that has already been conducted on coping strategies (Ludlow, Skelly, & Rohleder, 2012; Benson, 2010; Dardas & Ahmad, 2015). Yet, in the face of difficulties such as the ones caused by ASD, researchers believe that the existing coping strategies-related findings do not prove sufficient, increasing the importance of search for new or more effective coping techniques as a life time process. Also, parents whose children have been diagnosed with ASD are expected to be in critical need to develop continuing effective coping techniques to maintain their quality of life (Dardas & Ahmad, 2015). Parents whose children have newly or recently been diagnosed may reveal new patterns of their personal coping strategies that are not known yet to the existing knowledge base. Given that qualitative research recruits fewer participants and given that findings are usually not generalizable, multiple investigations should be welcomed that enroll parents who may not have had the chance to be interviewed to increase the number of qualitative research. The purpose of this present study was to add to the existing knowledge base regarding the way other parents describe their coping strategies when their child is diagnosed with ASD.  The current qualitative study is the second phase of a Mixed Methods Design, the purpose of which was to investigate factors that affect parental coping strategies. The investigated factors included parental self-efficacy beliefs and outcome expectancy beliefs.

Methods

Participants and Sampling

Purposeful sampling of parents who participated in the quantitative strand was used for this phase. Purposeful sampling is defined as a non-random method of sampling participants whose characteristics represent a particular population in which the researcher selects information that is rich in cases for study in depth (Patton, 2001). Information deemed rich in cases are those from which the researcher can learn a lot about issues of principal importance to the purpose of the investigation, thus the choice of sampling parents whose children have been diagnosed with ASD represents purposeful sampling for this study. Participants were five females whose ages ranged between 36 and 52 and one male aged 49. All participants were mothers and father who participated in the quantitative phase which used online survey questionnaire. They were all surveyed in the quantitative phase of this study and gave their written consent to participate in the current study. Participants were contacted four weeks after the initial online survey and phone interviews were scheduled and conducted from the main library of a public university in the State of Texas. Three participants were married and three were single parents. At the time of the investigation, two participants lived in the State of Texas, two lived in the State of Wisconsin, one lived in the State of Oregon, and one in the State of Ohio. Children with autism in their care were three, four, eleven, thirteen, seventeen and nineteen years old (M = 11.16, SD = 6.58) (see Appendix A).

Data Collection Procedures

The participants were interviewed in a semi-structured format, in which the researcher asked a series of structured questions and then deeply probed with open-ended questions to obtain additional information from each participant based on the findings of the quantitative data (Gall, Gall, & Borg, 2007). Phone or Skype interviews were optional. The researchers used phone interviews. All interviews were about 30 minutes long and the researcher digitally recorded and transcribed the information and developed themes. 

Data Analysis

The quantitative strand attempted to find out whether parents’ self-efficacy beliefs and outcome expectancy beliefs to cope with their child’s diagnosis of ASD predict the coping strategies they use. Unfortunately, they did not predict them significantly. To better understand the results the researchers undertook this qualitative research and developed questions which could not be answered in the quantitative strand. This qualitative investigation attempted to answer the following question: How do parents describe their coping strategies when they learned of their child’s diagnosis of ASD? (see Appendix B) The data analysis followed the process of inductive thematic analysis where dominant themes were manually identified through careful examination of data (Boyatzis, 1998). Interviews were first transcribed verbatim and read several times. The researchers decided on units of the analysis; that is, they agreed on the sections of the transcribed data that were to receive codes. Next they developed and agreed on a coding guide. Data analysis was carried out through a series of iterative stages during which the researchers read and coded all the transcripts based on the guide. To establish inter-rater reliability, a faculty member independently coded another copy of the transcript. Finally reliability checks were carried out. Using Statistical Package for the Social Sciences (SPSS), Cohen’s K was run to determine whether there was an agreement between the researchers and the faculty member. A moderate agreement was found, K = .720, P < .05.

Results

Seven major themes emerged that are associated with the coping strategies parents used to address their stress that results from their child’s ASD-related behaviors. They are a) suspicion and diagnosis coping, b) personality and emotional coping, c) action-oriented coping, d) coping through beliefs and values, e) learning coping, f) the self-care and the spiritual coping, and g) avoidance coping. In this section, each theme is discussed. Names that were attributed to participants are fictitious. 

Theme 1: Suspicion and diagnosis coping.  Participants’ responses to the interview questions revealed that they suspected that their child had ASD and accordingly they undertook to have him examined and diagnosed officially. Most parents asserted that when they started questioning their child’s behavior, they did some personal investigations and they checked books and other sources. Finally, they requested medical checkup. Helene, an interviewee shared her experience from the time she suspected her child to the diagnosis of ASD. She explained:

We had suspected before we got the actual diagnosis! We did a bunch of  researches on the computer. We suspected it before the diagnosis. People kept saying how he was in the school, and I did the research and wow that’s him!

As parents commented on the suspicion, they also revealed factors that contributed to the questioning of their child’s abnormal behavior. They explained that their suspicion emerged from their awareness of the disease that was based on their personal knowledge, but also on their professional experiences. For example, Joseph’s suspicion was based on his wife’s background experience. He said, “My wife was a speech pathologist and I was a teacher at that time. We knew what it was, that she could be on the spectrum. We did some tests that confirmed the diagnosis.” Wendy’s suspicion however was based on her past experience. She explained, “I knew before that. I knew when he was seven months old, when he was trying to crawl. He was trying to crawl, he was the whole different, and he would crawl differently. He was different.”

In terms of the diagnosis, all the parents asserted that their children got finally diagnosed. They added that the positive diagnosis of their children brought about some happiness to them, indicating that the suspicion process was difficult to endure. The reason why parents seemed to feel better after their child’s positive diagnosis was because there are opportunities to treat their children. They argued that only an official diagnosis could give access to opportunities available for children diagnosed with ASD. For example, when asked how they felt right after the diagnosis, Margaret said “huh huh happy!” and Helene replied, “Honestly, relieved, I guess!” Wendy answered, “I love my son.” Margaret, Helene, and Wendy said that they felt better after the diagnosis because they looked to early interventions for their children and the diagnosis had just opened doors to therapies. Margaret shared her experience after the diagnosis. She explained:

He went to two schools. He went to a special school half a day and a regular integrated school the other half of the day. And he actually got better. I think because I started early with all the treatments I gave. He was treated for sensory problems.

Helene’s reasons were not different from Margaret’s. She explained, “My son was in a program for disability. He started case management, different things that we would not have got without the diagnosis.” Midence and O’neill (1999) found that parents suspected that their children had ASD prior to medical or psychological diagnoses. They asserted that parents have multiple problems related to their difficulties in understanding their child’s behaviors. Parents also had stress from their misunderstanding that resulted from their incapability to make sense of these behaviors and difficulties in obtaining a diagnosis. Common elements of suspicion are based on the child’s developmental delay and the child’s behavior characteristics.

Theme 2: Personality and emotional coping. Participants’ responses revealed that they used coping strategies that relate to their personalities and emotions. Personality and emotional coping refers to coping with one’s child’s diagnosis of ASD in which parents draw their strengths from their own characters and feelings or in which parents just release their emotion in an attempt to feel better.

In the terms of personality coping, for example, Margaret and Ashley can be depicted as having strong temperaments. When asked, Margaret answered, “Huh, no! I am not a crier!” Instead, she uses techniques to deal with her emotions that keep her from feeling sad. She said “I set myself in positive motion. I did nursing. I worked long time. And also by being proactive, I found results that make me feel better.” Like Margaret, Ashley also said “No!” She does not cry, and she continued to answer, “I have accepted the reality of the fact that it has happened.” In others words she has accepted the fact that her child has ASD. She was not complaining about the situation. She did not lament on her child’s condition.

Other parents such as Helene, Joseph, Angela, and Wendy, however depicted themselves as emotive people who cry. Joseph, a father explained the idea as taking over from his depressed spouse to grieve for a little while because both husband and wife could not allowed themselves to be overwhelmed at the same time. He said:

Huh, originally, I think, my wife had a harder time. She was really depressed. I the father had to be the strong one. I tried not to stress very much. So I don’t know how long it took, but my wife got to get ok. When she got ok, I allowed myself to grieve for a while. I had a really hard time.

Helene also shared her personal crying experience. Although hesitant, she admitted that she screams regardless of the frequency. She said:

Well, sometimes. I don’t know, often. It is overwhelming. Sometimes, I feel like I am not doing enough or trying to give up with that routine. That’s why we try to get services. I don’t know if I would say that I often cry. It is really hard.

Personality and emotional coping seem to work for all the participants in this study, in that, they provide them with reliefs. Although emotional coping does exist in the coping literature, coping strategies based on personality or individual temperaments has not met yet a lot of attention.

Theme 3:Action-oriented coping. Parents noticeably expressed that they took actions to cope with their child’s diagnosis of ASD. Action-oriented coping refers to coping behavior in which family members use activities to alleviate the difficulties associated with their child’s diagnosis or condition. Helene said, “I stopped working when I was pregnant. My husband said, ‘just stop working, just stop going to work! Don’t worry about going to work!’ ”

Margaret’s explanations of her coping strategies uncovered how she made use of actions to help her child. She said “I just learned everything that I could and I actually spent every hour of every day with my son to all kinds of therapies and he started school earlier.” Joseph described how active he and his wife have been with their daughter’s education. Their actions spread across several years and actions were actually part of their daily lives. He explained:

We decided to go ahead and pull her out of the independent school district and homeschool her. We did that from her 2nd grade year through 6th grade and we put her back in the school system in the 6th grade. So, from 2nd grade to 6th grade, we homeschooled. That was an effort from my wife who purchased curriculum and material to help her. My wife worked with her, my mother’s mom, my father’s mom, huh; my father’s mom retired a math teacher. My mother worked with language skills, with learning things like idiomatic expressions. The homeschool worked on functional, language skills. We purchased a reading program. We purchased the program that worked very well for her.

In addition, parents made a correlation between the actions they took and their access to treatments, also their child’s educational improvement. For Helene, Margaret, and Joseph the actions they took helped alleviate their child’s condition as they could access services that are normally difficult to obtain by parents of children diagnosed with ASD. Joseph said that after taking actions, his daughter has much improved her reading and writing skills. He said, “We started home school. We purchased the program that worked very well for her. It worked well. She knows how to read and write and she is very well with that.” Margaret shared similar opinions. She said, “He actually got better. I think because I started early with all the treatments I gave. He was treated for sensory problems.” Helene also justified her reasons for taking the action of quitting her job:

Not a lot of people get services. It was easier to stay home. Now, I know it has a lot to do with autism appointments. We did not want to put him in daycare. It is so easier to stay home and take him to autism appointments.

Action coping, also called active coping (Snow-Turek, Norris, & Tan, 1996) has been dealt with in past and present researches related to how people cope with difficult stressful situations. Its use in the present research has revealed that it help parents cope successfully and also improve children’s lives.

Theme 4: Coping through beliefs and values. Participants also asserted that they coped through their beliefs and the values they attribute to persons or results of predicted actions. Coping through beliefs and values refers to parental cognitive activities that make them cope successfully given the importance of the person they have to cope for and given the importance of the expected results of the actions.

In the terms of beliefs, parents’ beliefs about their capabilities and talents are supported by their past experiences and their professional trainings according to participants’ own descriptions. For example, Ashley expressed her beliefs about her capability to cope successfully with her child’s diagnosis of ASD. She argued, “I have a health care background”. As she was asked to rate her beliefs, she pointed at the child’s progress. In other words, she believed that she could successfully help her child improve his behaviors. When asked how she would rate her success so far, Ashley continued, “Huh, I think somewhere, compared to the point he was a few years ago, he is definitely achieving. He knows every day. He gets better every month. It is the growing process.” Ashley implied that she is successful and that her beliefs were based on actual achievement.

Margaret also asserted with certainty that she believed she could successfully help her child and that she could cope effectively. She explained:

I did nursing. And I know that, as a nurse, if I have somebody that has stroke, even a sixty-year old, I can do therapy with them. That will help retrain other parts of the brain get over the part I am working. I figure out that if I can do that with a sixty-year old, it would be a lot easier with a 2 year-old. It worked!

In the terms of value of persons, parents evoke their affection. Motivation was demonstrated through their affection or value for their child. They described their strength as the acceptation of their child’s condition, their love for the latter, and the oneness of both of them. The value they attribute to their child is high and plays a powerful role. It represents a source of motivation as explained by Wendy. She said, “I loved my son! I just know that I had to help him with what he needed.” “My son is a part of me” said Angela. Prior to that, Angela said, “I didn’t feel any different than if he didn’t have autism. I just had to be more diligent. I still had to find how to understand things.”

In the terms of value of outcome expectancies, participants’ responses showed that they have positive expectations. Parents were asked what they expected when taking actions to help their child. Helene responded, “I knew that there were treatments available that we haven’t even tried yet. We probably would try to see some of the improvements with the therapist.” Helene believed that her outcome expectancy was accurate when she had the outcomes of the therapy she went for. She commented, “It has helped him tremendously. When he started the autism program at school the behavior stopped almost and are completely eliminated. He is tremendously different.”

Like Helene, Margaret grounded her outcome expectancy beliefs on her child’s past IQ test results. She knew that if her child had high IQ in the past, then there was a high chance that her child would adapt well in the future if given adequate treatments. Margaret said:

Part of the testing they did was, huh, they did an IQ test when he was two years old. And the IQ is very high, so I knew he wasn’t bad. I also know that a child, yeah the brain still has to develop.

Researchers also have addressed the fact that beliefs such as self-efficacy contribute an important part of parents’ capabilities to successfully accomplish tasks and cope with stressful situations. It was found that feelings of capability in the parental role have been related to well-being and positive parenting outcomes (Kuhn & Carter, 2006).

Theme 5: The self-care and the spiritual coping. Participants’ comments revealed that their use of coping strategy was related to their self-care and their spirituality. The spiritual coping refers to some of the irrational methods (spiritual) used by parents to cope with their stress resulting from the diagnosis of their child’s ASD.

In the terms of spiritual coping, four participants supported the fact that their Christian faith has played important roles from the start. When asked to rate the contribution of their faith in their coping strategies on a scale from one to 10, one being little faith and 10 being very much faith, three participant believers indicated 10 and one participant selected 8. For example, when asked if she prays, Angela answered, “Oh yes, every day, prayer plays a big role. I wouldn’t have done things I am doing now if I didn’t. Prayer is very important. On a scale 1 through ten, I would give ten.”

Ashley also described herself as a faithful person and would rate her Christian faith “8 on a scale from one to 10” in terms of contribution to her coping strategies.

Joseph seemed to be deeply embedded in a faithful Christian life. He described the impact of his religious beliefs and practices on his coping attainments. He said:

The process of doing that in our faith is that both (Joseph and his wife) realized that this is what God gave us and our job is to do the best we can for her (their daughter) and accept her as she is and how she is and not be ashamed of her.

Joseph also explained “I don’t think if we hadn’t have faith, we would have struggled together.”

Ashley also shared similar religious beliefs. She supports the view that humans are capable of solving any issues that they face, that no problem should normally be greater than a person’s competencies. For her, autism can be dealt with as a Christian. She said, “My personal beliefs, God will not give me anything that I can’t handle, but you know I was raised that way.” Unlike other parents, Margaret asserted that she is not a believer. But she said, “I do meditation.” When asked about the place of religion in her coping life, she replied, “None, I don’t go to church, I don’t believe.”

As far as the self-care is concerned, it refers to the utilization of coping techniques that are oriented toward the parent (self), not the child. Parents described their coping strategies as a process of embellishment to feel good about oneself and being in disposition to lend a helping hand. Respondents suggested that they would resort to the techniques every time they stress. For example, when asked if she does something positive to cope, Angela reported, “Get my nails done, pedicure, manicure.” Margaret shared similar thoughts. She went further to explain how she used and taught her patients’ parents good coping techniques that comprise the refinement of the self. She commented:

One of the things I found is that people don’t take care of themselves. So I would teach my patients’ family. The only way they can help their family members if they have a problem is to take good care of themselves. They need to feel good in order to take care of the person that needs help. I make sure I apply that to my kids.

Besides, the self-care has been associated with the practice of sport, art-journal writing, jewelry designing, and the use of entertainment. Margaret explained how art has been used to cope with her child’s condition. She Said:

Huh, yeah, I am pretty creative. I kind of make it fun for myself. You know, do things that are not stressful like my art journaling. I also make design jewelry, which I find very relaxing. Huh, I think, walking!

The self-care as taking care of self which include doing art to cope with stressful situations has not been well developed in the existing literature, unlike spiritual coping.

Theme 6: Avoidance /Escape coping. Parents’ description of their daily lives revealed that they managed to avoid or escape from some situations or realities. Avoidance or escaping coping refers to one of the strategies parents use to get rid of certain situations or persons, thereby lessening their stress. Parents proposed several types of avoidance or escape coping strategies. For example, parents deal with their child’s diagnosis of autism by associating the diagnosis with positive values. Interview transcripts revealed that parents created occasions to have fun. Helene explains how they make fun of the situation. She said:

We have to laugh about it (the fact that their child has ASD) sometimes. Sometimes, of course the autism support group, we have all kind of means. But not making fun like we are laughing about it to be mean, but laughing together because our children have similar behaviors.

Beside, making fun of the disorder, other parents valued ASD by comparing it with other ailments. For example, Margaret raises the value of ASD by comparing it to other disabilities deemed worse. According to her, “children are all at different levels.” She asserted “I also know that autism is not necessarily a bad or horrible thing. Like I said epilepsy scares more than anything else.” As a matter of fact, ASD is no damnation to her. It is just a matter of difference between individuals.

Another form of avoidance coping is coping that consists of the rejection of people’s negative perception of autism and negative perception of children diagnosed with ASD. Angela is more categorical about the acceptation of children differences. She claims that her child is part of her and should be accepted as such. She said that her child did not change her life “to a drastic extent.” She also added:

This is how I look at this child: My son is a part of me. Was he born autistic or did I ask him to be born autistic? So if you can’t accept the fact that my child is different from you or anyone else, my child does not need to be around you!

Angela added that she usually stays away from people in general. She explains that, “people are mean.” Angela spoke little. She provided short answers. She stated that she was not seeking new friends and she explained that the reason was because she was trying to avoid jail that could separate her from her child. When asked if she makes new friends as a way to cope with her child’s diagnosis, she replied:

No I don’t do that. Me personally I don’t make new friends. I can, but I don’t. Make my circle bigger? I don’t have time to go around the whole detail, how he became autistic, why he doesn’t talk? Autism is out there in the world, people should understand that not everybody is the same. Now I don’t want to go to jail.

Wendy shared the same idea about the outside people who seem to contribute to parental stress by not understanding the children with ASD and their parents. Although she did not openly express isolation, she described people as non-understandable agitated agents. That is what makes her cry. She commented:

Oh yeah! Oh, yeah, I cry now, you know! I feel like people don’t understand. More people get agitated about it, you know! Actually, I am an advocate for him because he was bullied at school and he was trying to hit people. The principal, nobody would listen to him. So when he started to retaliate, then he was the one that got into trouble. What about the other child? There’s something that triggers the kid that people don’t understand. They have not been fair with my son in the school.

Parents also described their coping as avoidance or escape from situations that could weaken their coping strategies and worsen the situation as a matter of fact. For example Joseph acknowledged that his marriage contributed to his successful coping strategies. He explained “We come to the point where we realize that it is not about what we think. It is about what we do together you know, for our kids.” He implied that being married is an advantage that must be preserved, thus avoid divorce. He further described how he was currently attempting to help a family avoid or escape from divorce. Joseph argued:

I am kind of sad right now because, there is a family I worked with that is divorcing. They have a child with autism. And part of the problem is the stress due to autism. I saw the mother on Thursday, and I said I don’t know what is going on with all. It probably has to do with autism, you know. I told her “let me talk to your husband.” So I can help them. I don’t know if they will let me do that, whether they will let me help. I think I can offer them things that some others can’t.

The use of avoidance/escaping coping is consistent with existing theories (Holahan, Moos, Holahan, et al. 2005), although the negative sides of avoidance coping have been highlighted.

Theme 7: Learning coping. Parents commented a lot about their learning experiences as they cope with their child’s diagnosis of ASD. Learning coping include the use of books, computers, or internet in order to get insight into autism, its manifestations, diagnosis, life style, and coping strategies. For example, Wendy affirmed, “I did a lot of research on the internet too.” Margaret described her learning coping experience as an effortful processing that called for her mind and physical strengths, but also her volition and sacrifices. She said:

I make it sounds a lot easier than it is but it was a lot of work! I took tone of classes for everything I had to do with child development. I had to teach science. Some of the classes had to do with early intervention. Classes were free. We have another program called acceleration for children with special needs. They have tone of activities and classes. I was going to school and took care of three kids.

Opportunity for learning also was advocated by parents as a means of preparation for families, not only to get insight into ASD, but also as a means to take early actions known to provide better results as far as ASD is concerned. In this light, Angela, who described herself as an advocate for parents of children with autism, asked for more parental education for the sake of children made some requests related to learning. She said:

More support groups, more transportation for people who don’t have transportation. They need autism awareness. They need to educate people about the early signs of autism and what they can do at that point. I didn’t know that my child has autism. I was not familiar with autism. We just need more education, awareness. Now autism is more relevant with women. Every hundred child has autism.

Learning coping enriches parental experiences, equips parents with strategies, and provides them reliefs. The interview responses revealed that parents who have very advanced education can do a lot for their children. For example, when asked if she would say that her academic knowledge helped her succeed in coping with her child’s diagnosis, Margaret, who previously introduced herself as possessing “ three college degrees” and also who “ love to read, love to learn” was “ starting my doctoral degree in behavior health in September.”, answered:

Oh, definitely yes! I know how to do a review of literature. I knew how to gather information in scientific documents and put them together and see if I needed to learn. And basically I figure out that most of his (her son) problems were sensory problems. So I broke them down into each sensory problem and I treated him for that. In the summer I have problem to put him summer clothes because he doesn’t like to see the hairy skins. Then by the beginning of the winter, I finally gave him summer clothes, and now he does want to wear winter clothes because he does like to deal with clothes on the skins. So one of the things I did, I did a brushing program. He just brushes on the skin, massaging pad, different kind of feelings. I just did all kinds of sensory feelings with him. During the summer I would put a blow up pool out my desk, children cream, anything to get used to different feelings. It seems it has worked! My mother told me I should write a book!

Like Margaret, Joseph and his wife also have advanced education. Joseph and his wife have completed university programs and were both speech pathologists. Both knew how to make use of their education and skills to help themselves cope. Joseph said:

We borrowed books and I can think of one that was famous for teaching the concept of times. It employs a lot principle to interact with the kid. Meeting them where they are is part of developmental progress and knowing the activities of how to move them forward. Our daughter had a lot of problems and confusions. She would use the wrong pronouns. You know, talking about herself as “you”. What do you want to eat for supper? Do you want to eat X or Y? She would say “Dad, you want ice-cream.” And we had to work really hard on marbling. How we ask questions or things, learn how to do that. We are speech pathologists we know what to do. We have stories to tell her what to do. If we don’t have answer, we talk to professionals to give us some advice. But most of the time, we know what to do. We don’t purchase a whole lot of books anymore. We read a lot.  

In this light, Brammer and Abrego (1981) hypothesized that in the process of coping with life-threatening adjustment, people can learn how to manage future transitions. They argued that the change sets in motion a renewal process which is characterized by new life goals and instructions that lead to higher satisfactions than before the painful transition.

Discussion and Conclusion

The qualitative data used to answer the research question revealed seven themes. Analyses based on a constant comparative approach suggests that parents describe their coping strategies before and after they learned of the child’s diagnosis of ASD in the following manners: a) suspicion and diagnosis coping, b) personality and emotional coping, c) action-oriented coping, d) coping through beliefs and values, e) learning coping, f) the self –care and the spiritual coping, and g) avoidance/escape coping. Regardless of the limited number of participants, the data suggest that parents whose children have been diagnosed with ASD experiment troubled lives. The manners in which they provide their personal descriptions and experiences imply that they are not passively waiting for assistance to emerge. But by being active agents in their quest for coping and problem-solving strategies, they have more control over the outcomes of the situation. At the psychological and behavioral level, they attempt to take control of their new lives as they relate to the ones of their children. The findings also showed that all parents would do all it takes to overcome the difficulties associated with the way their child’s mind works and the way their child behave. We believe that the availability of services to parents are somehow likely to diminish the quantity of physical efforts, mental functioning, aesthetic-like solutions, and religious coping they bring in to tackle the situation. Thus, we highly recommend that parents participate actively in the development of the care and treatment design for their children. Suspicion and diagnosis coping, personality and emotional coping, action-oriented coping, coping through beliefs and values, and learning copingare all consistent with social cognitive theory.  

Regarding suspicion and diagnosis coping, a child’s diagnosis of ASD should normally produce cognitive activities and behaviors. The theory prioritizes a model of causation comprising triadic reciprocal causation in which behavior, cognition and other personal elements such as beliefs, emotions, motivations, and environmental factors work as networking causes that affect each other bidirectionally (Bandura, 1989). The process of coping through suspicion and diagnosis is then a normal human process in the face of difficulty and entails self-regulation such as planning and organization as advocated in social cognitive theory. Behind the theme of suspicion and diagnosis, there appears to be a request to provide parents with information and services.  

Regarding personality and emotional coping, it is suggested that coping is a persistent and compound mental development process, entrenched in a system of intellectual and behavioral links (Carver & Scheier 1994; Lazarus & Folkman, 1984) which must be reproduced in a coping model that is able to explain the many techniques individuals approve. The current findings suggest that an individual’s personality and emotions can make a difference when they cope in stressful situations; their personality and emotions mediate how successfully they will cope. The findings suggest that different people may use different coping strategies such as releasing their emotions to feel better or using certain natural dispositions to cope successfully.

Regarding action-oriented coping, it is referred to as a coping behavior in which family members use actual actions to alleviate the difficulties associated with their child’s diagnosis or condition. The finding is also consistent with the literature. In a study conducted to address anxiety, action coping was found to be a way of overcoming it. LeDoux and Gorman (2001) suggested from their laboratory studies that patients develop approaches that make it possible for them to be active by doing something anytime they are having dysphoric thoughts. In other words, parents should be using action coping strategies. Herman-Stahl, Stemmler, and Peterson (1995) suggested that action coping approaches such as problem solving action, logical analysis and the search for information were associated with the mental health of subjects being investigated. In the contrary, passive coping strategies such as avoidance, denial or suppression of emotional states were associated with disturbance to life stress. A possible interpretation for this type of coping is that parents not only use their cognition and knowledge about ASD, but they may also feel empowered to take actions to cope with the new situations.  Also, action-oriented coping behavior appears to be at an advanced level of the all coping strategies considered in this study. Action coping appears as the application of decisions made at the cognition level. Knowing how to solve an issue has value when parents take action to and apply the knowledge to solve a problem.

 Regarding the coping through beliefs and values, parents believe that they can help their child live a better life. It is also referred to as parental affection for their child and it is important to the point that parents will take actions to help their child and avoid the related stress. The finding is also consistent with past research. Wigfield and Eccles’s (2000) expectancy-value model proposes that expectancy and value are the most instantaneous or straight predictors of performance. They also argued that expectancy and value are influenced by several psychological, social, and cultural influences. Possible interpretations of the findings are that parental beliefs and values are incentives that motivate them to help their child.  Thus, beliefs and values may be perceived as necessary facilitators for parents to take actions. Although people cope through their beliefs and values in the existing literature, this coping strategy has not been termed and clarified like in the current study. Recommendations are made for future researches to make this type of coping stand on its own. Individuals may not have the same beliefs and values because of cultural and historical differences. We argue that this type of coping, however, can be universally acknowledged.

Regarding avoidance/Escape coping, it is referred to as a coping in which parents do not confront ASD. Instead, they search for distractive opportunities to forget about their situation. Arata (1999) argued that coping strategies used by patients such as distraction, disengagement with a stressor, denial, and social withdrawal are all forms of avoidance coping techniques. It also was found that some of those techniques have been related to greater distress in sexual assault survivors (Frazier, Mortenson, & Steward, 2005). Resick and Schnicke (1993) asserted that although these responses could be adaptive in the short run for crossing the crisis period after trauma occurs, it is understood that enduring avoidance coping may be related with greater psychological trauma in the long run.  As a well-studied coping strategy, avoidance/escape coping seems to provide temporary relief. It usually resurfaces because the stressful situation is not acted upon, but avoided. This finding implies that when parents’ child is diagnosed with ASD, parents are likely to use a variety of coping strategies, both long term and short term effective techniques. This also suggests that the diagnosis of ASD may seriously affect parents’ daily routines.

Learning coping instead, has been referred to as a coping strategy in which parents use books, computers, or internet in order to get to understand ASD, its manifestations, diagnosis, life style, and coping strategies. For Glanz, Rimer, and Lewis, (2002), the condition refers to the mind or intellectual pictures of the surroundings that can impact an individual’s conduct. The situation is the individual’s observation of the tie, period, corporal structures and effort. In a study about adult learning, Aslanian and Brickell (1980) examined the reasons for and the timing of adult learning. Eighty three percent of respondents said they were learning to cope with factors such as career, family, health, or religion. In addition, analysis of adult learning procedures revealed that over half of the participants studied career-related topics, about 30 percent learned on their own, 30 percent learned in learning institutions, and 40 percent learned in a different setting. Brammer and Abrego (1981) hypothesized that in the process of coping with life-threatening adjustment, people can learn how to manage future transitions. They argued that the change sets in motion a renewal process which is characterized by new life goals, and instructions that lead to higher satisfactions than before the painful transition occurred.

The theme suggests that the more parents know about the disorder, the better they will cope with it, using different strategies that can be found as they learn. In this light, learning coping may significantly contribute to parental coping through self-efficacy and outcome expectancy beliefs. Although past research has addressed the theme of learning coping, much research is still needed in the area to support the coping techniques.

Finally, the spiritual coping is referred to as the irrational methods used by parents to cope with their stress resulting from the diagnosis of their child’s ASD. These include parents’ maintenance of physical and psychological functioning and parents’ relation to spirituality and divinity.  Faith has been used as a way for people to cope in the coping literature. Hall (1986) gives an indication of spiritual growth by explaining how individuals may be found to transcend themselves so as to reach a higher power, such as God or forces of nature in an attempt to cope effectively with the stressful situation they undergo. O’Connor, Wicker, and Germino (1990) in turn, argued that patients may find meaning and determination in their disorder, which results in making productive changes in life and reordering personal values.  Tarakeshwar and Pargament (2001) measured the role of religion when parents cope with their child’s diagnosis of ASD. Forty-five family members took the Brief Religious Cope (RCOPE) survey, and a smaller sample of parents also was interviewed about the religious coping they use. Results showed that religious coping strategies accounted for only one variance in the assessment of regulation. In addition, positive religious coping strategies were related to improved religious results and superior stress-related development, while negative religious coping was related to more depressive distress and weaker religious results. The interviews, in turn, recognized different manners through which religion-based coping influenced the coping procedure of these parents other than those that were previously recognized in an existing knowledge base of instruments.      

The self-care as a coping technique was described as a process of embellishment to feel good about oneself and being in disposition to lend a helping hand. We thus recommend that future research pay more attention to the themes that speak to parental coping strategies when analyzing qualitative data. In the face of difficulties, such as the one related to the presence of a child with ASD, parents are likely to neglect or ignore themselves to the detriment of their child. The self-care or aesthetic-type coping seems to strengthen parents and prepare them to assist their child. Aesthetic-type coping also entails that life as not ceased for the parents and that they can still control the household. Feeling good about oneself is an energy provider.

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Appendix A

Demographic variables of volunteer interviewees.

Participants	Gender/ relationship	Age	Marital status	Occupation	Age of child	Race/Ethnicity	State
Helene	Female/mother	36	Married	Unemployed	3	White	Texas
Ashley	Female/mother	36	Married	Own a business Works from home	4	White	Oregon
Angela	Female/mother	41	Single	Unemployed	13	Black	Ohio
Margaret	Female/mother	52	Single	3 college degrees Nurse degree Works part time	17	White	Wisconsin
Joseph	Male/Father	49	Married	Health professional	19	White	Texas
Wendy	Female/mother	45	Single	Unemployed Depends on Social Security	11	White	Wisconsin

Appendix B

                                                   Interview script (Semi structured)

1. How do parents describe their coping strategies when they learned of their child’s diagnosis of ASD?

a. Please introduce yourself.

b. When was your child diagnosed with autism?

c. Please describe your feeling after the diagnosis.

d. Did you feel that you could do anything to help your child?

e. Why did you feel that you could help him or her?

f. What are some of the actions that you undertook to help your child? Please describe.

g. What did you expect when taking these actions?

h. In general describe how you manage to cope with the feeling that you had when you knew about your child’s diagnosis

i. Do you have anything to add to this?

j. Thank you very much. If you have anything to add to this you can still call me at…………..