The findings in the present study highlight the unique experiences and confirm the known ways that caregivers of children with autism experience autism biologically, psychologically, socially, and spiritually. Continuous review of the changing landscape of caregivers’ experiences is needed. New conclusions were drawn associated with the psychological benefits of advocacy and perceived control, frustration with the lack of biological answers, and the presence of lowered self-confidence. Although labels of stress or frustration may be used to reflect the general struggles that caregivers may experience, a specific focus on lowered self-confidence may help
Table 1. Exhaustive description
The caregivers in this study reported how autism has impacted their psychological, social, spiritual, and family dynamics. Psychologically, many reported gains in knowledge, patience, insight, motivation, and selflessness. Some caregivers reported psychological strain occurring simultaneously with social enrichment where others reported strain in isolation. These challenges most often surfaced in the areas of selfconfidence, lack of time, difficulty in coping, and frustration over the lack of biological answers. An area that compounded this reported psychological strain was economic factors (i.e., financial difficulties and limited job flexibility). Without doubt, autism led to some challenges. Challenges included strain on caregivers’ romantic relationships, equal attention to all of their children’s accomplishments, jealousy between siblings, and psychological well-being for typically developing siblings. Socially, it enabled them to meet new people who shared in their struggles and strengthened bonds between family members. However, the lack of understanding surrounding this disorder led to frustrating social interactions with those without a child with autism. They reported that society lacks knowledge of this disorder and how it shapes families. Caregivers’ views of services were also mixed. They identified dedicated teachers, community instructors, providers, and community assistance programs as offering an enormous amount of support, structure, understanding, and hope for the family. One area of reported frustration was the school system. A lack of choices led many caregivers to home school, utilise private schools, and hire additional support. Other areas of aggravation for caregivers were the lack of patience from medical professionals, the lengthy time necessary to obtain diagnosis, and deficient laws for those who abuse children with autism. Caregivers often questioned their decisions regarding services, levels of autonomy for the child, and their role as a parent. However, many caregivers shared that having a child with autism is a constant process of acceptance. Through the benefits and challenges, numerous caregivers felt blessed and thankful to God for the presence of the child with autism in their lives. Spirituality served as a key coping tool for many caregivers in refining and strengthening their values through this parenting process.
32 K. W. Phelps et al.
interventionists to provide targeted psychoeducation to this specific risk factor, possibly thwarting greater psychological strain. Also new was the finding of caregivers further valuing achievements for typically developing siblings and forming stronger relationships with them as a result of having a child with autism. The social and biological dimensions of the caregiving experience had both favourable and unfavourable implications for caregivers’ psychological well-being. Similar to the present study, other researchers have noted the negative implications for siblings and the marital dyad (Baruth & Burggraf, 1983; Bischoff & Tingstrom, 1991; Rodrigue, Geffken, & Morgan, 1993). Caregivers’ increased risks for dysphoria, anxiety, and depressive symptoms have also been highlighted by past researchers (Gray, 2002; Holroyd & McArthur, 1976; Sharpley & Bitsika, 1997; Wolf et al., 1989). Lastly, the influences of age and size as the child with autism matures have also been noted (Gray, 2002). These findings, new and old, reinforce the need for professionals to assess caregivers and siblings for increases in psychosocial strain when the child with autism is entering new developmental periods. The social context both helped and hindered the adjustments necessary in the parenting process either by showing acceptance and understanding of the family’s situation or by the alternative, being judgmental or critical. As a result of the experiences reported, we recommend that professionals be sensitive to the divergent experiences of caregivers of children with autism and support families in tailoring treatment goals to their unique family dynamics. Caregivers in this study addressed society’s lack of knowledge and acceptance surrounding autism. They reportedly struggled with acceptance in a society where autism is still misunderstood, compounding existing psychosocial strain. A clearer understanding of autism by informal and formal supports would alleviate strain for caregivers and give them an outlet to seek emotional and practical support. It is necessary that individuals in a variety of helping professions receive education on the characteristics of autism disorder, systemic implications of the diagnosis, and suggestions of how to ease the strain experienced by these families. Additionally, it would be useful to incorporate further information into social venues (e.g., media, churches, schools) to teach society about the experiences of individuals with autism disorder and their caregivers. Findings related to services are largely supported by existing research and reveal a number of distinctive conclusions. Past researchers have cited the importance of trust between microsystems
(Stoner & Angell, 2006); however, this study points to the importance of including caregivers as valued members of the collaborative team. When this occurred, caregivers seemed to be more pleased with the services provided. On the contrary, caregivers who felt ignored or misunderstood by service providers often took their child’s care into their own hands. Based on these findings we recommend that all programs incorporate family/caregiver members into their meetings and planning processes. The perceived helpfulness or unhelpfulness of formal supports may have implications for how caregivers assign beliefs and meaning to their lived experiences. Our findings substantiate the limited literature surrounding the inclusion of spirituality in coping (Bristol, 1984; Coulthard & Fitzgerald, 1999). Caregivers’ narratives further demonstrated spirituality’s role as a useful coping tool. Furthermore, the use of personal beliefs and spirituality created a path toward making meaning of this lifelong disorder. We suggest professionals assist caregivers in identifying their spiritual resources to cope with the psychological, familial, social, service, or economic challenges they face. Professionals are encouraged to attend continuing education opportunities to learn how to incorporate spirituality into their work with these families. No doubt, caring for a child with a disability is a difficult economic task. Past researchers have described caregivers’ frustrations with time constraints, costs of interventions, and employment restrictions (Gray, 2002; Jabrink, Fombonne, & Knapp, 2003). This study’s qualitative findings confirm the presence of these economic challenges. The reported economic strain was noted to directly impact caregivers’ psychosocial well-being. Financial struggles, such as credit problems or excessive expenses, were coupled with narratives of frustration. Thus, it may be vital for professionals to understand the integration of financial security into the family’s biopsychosocial-spiritual and ecosystemic dimensions. It is also important that they consider these elements with a focus on the present as well as on the future. Our findings confirm that caregivers of children with autism have anxiety about their child’s future (Gray, 2002). With more coordinated treatment plans and ecosystemically sensitive processes, living with autism does not have to be a lonely experience. There are many benefits to caring for a child with special needs, as reported by the caregivers in this study. These benefits may either become muted or amplified based on how the informal and formal support persons who surround them react and respond to their needs. Psychoeducation and continued research is needed to
Qualitative implications of autism caregiving 33
help identify the ways our society can further invest in helping these families to thrive.
Future research
Given the limited number of qualitative studies about caregivers’ experiences of parenting children with autism, qualitative research incorporating a more diverse sample is needed to enrich the available literature. Specifically, future researchers could incorporate fathers’ lived experiences and those of caregivers of girls diagnosed with autism. The autism literature is limited in these areas since women serve as caregivers more often than men, and boys are more likely than girls to be diagnosed with the disorder (American Psychiatric Association [APA], 2000). Future studies addressing demographics (e.g., socioeconomic status, age, race, etc.) could enhance the available information by investigating comparative similarities and differences among caregivers’ phenomenological experiences with regard to resources, support, and coping strategies. Lastly, future research addressing the usefulness of multidimensional approaches and integrated models of care is needed. The systemic and ecological findings of this study support the use of comprehensive interdisciplinary assessment processes and intervention plans. Using a mixed method approach to study the effectiveness of models of care when multidisciplinary teams of professionals create t
The findings in the present study highlight the unique experiences and confirm the known ways that caregivers of children with autism experience autism biologically, psychologically, socially, and spiritually. Continuous review of the changing landscape of caregivers’ experiences is needed. New conclusions were drawn associated with the psychological benefits of advocacy and perceived control, frustration with the lack of biological answers, and the presence of lowered self-confidence. Although labels of stress or frustration may be used to reflect the general struggles that caregivers may experience, a specific focus on lowered self-confidence may help
Table 1. Exhaustive description
The caregivers in this study reported how autism has impacted their psychological, social, spiritual, and family dynamics. Psychologically, many reported gains in knowledge, patience, insight, motivation, and selflessness. Some caregivers reported psychological strain occurring simultaneously with social enrichment where others reported strain in isolation. These challenges most often surfaced in the areas of selfconfidence, lack of time, difficulty in coping, and frustration over the lack of biological answers. An area that compounded this reported psychological strain was economic factors (i.e., financial difficulties and limited job flexibility). Without doubt, autism led to some challenges. Challenges included strain on caregivers’ romantic relationships, equal attention to all of their children’s accomplishments, jealousy between siblings, and psychological well-being for typically developing siblings. Socially, it enabled them to meet new people who shared in their struggles and strengthened bonds between family members. However, the lack of understanding surrounding this disorder led to frustrating social interactions with those without a child with autism. They reported that society lacks knowledge of this disorder and how it shapes families. Caregivers’ views of services were also mixed. They identified dedicated teachers, community instructors, providers, and community assistance programs as offering an enormous amount of support, structure, understanding, and hope for the family. One area of reported frustration was the school system. A lack of choices led many caregivers to home school, utilise private schools, and hire additional support. Other areas of aggravation for caregivers were the lack of patience from medical professionals, the lengthy time necessary to obtain diagnosis, and deficient laws for those who abuse children with autism. Caregivers often questioned their decisions regarding services, levels of autonomy for the child, and their role as a parent. However, many caregivers shared that having a child with autism is a constant process of acceptance. Through the benefits and challenges, numerous caregivers felt blessed and thankful to God for the presence of the child with autism in their lives. Spirituality served as a key coping tool for many caregivers in refining and strengthening their values through this parenting process.
32 K. W. Phelps et al.
interventionists to provide targeted psychoeducation to this specific risk factor, possibly thwarting greater psychological strain. Also new was the finding of caregivers further valuing achievements for typically developing siblings and forming stronger relationships with them as a result of having a child with autism. The social and biological dimensions of the caregiving experience had both favourable and unfavourable implications for caregivers’ psychological well-being. Similar to the present study, other researchers have noted the negative implications for siblings and the marital dyad (Baruth & Burggraf, 1983; Bischoff & Tingstrom, 1991; Rodrigue, Geffken, & Morgan, 1993). Caregivers’ increased risks for dysphoria, anxiety, and depressive symptoms have also been highlighted by past researchers (Gray, 2002; Holroyd & McArthur, 1976; Sharpley & Bitsika, 1997; Wolf et al., 1989). Lastly, the influences of age and size as the child with autism matures have also been noted (Gray, 2002). These findings, new and old, reinforce the need for professionals to assess caregivers and siblings for increases in psychosocial strain when the child with autism is entering new developmental periods. The social context both helped and hindered the adjustments necessary in the parenting process either by showing acceptance and understanding of the family’s situation or by the alternative, being judgmental or critical. As a result of the experiences reported, we recommend that professionals be sensitive to the divergent experiences of caregivers of children with autism and support families in tailoring treatment goals to their unique family dynamics. Caregivers in this study addressed society’s lack of knowledge and acceptance surrounding autism. They reportedly struggled with acceptance in a society where autism is still misunderstood, compounding existing psychosocial strain. A clearer understanding of autism by informal and formal supports would alleviate strain for caregivers and give them an outlet to seek emotional and practical support. It is necessary that individuals in a variety of helping professions receive education on the characteristics of autism disorder, systemic implications of the diagnosis, and suggestions of how to ease the strain experienced by these families. Additionally, it would be useful to incorporate further information into social venues (e.g., media, churches, schools) to teach society about the experiences of individuals with autism disorder and their caregivers. Findings related to services are largely supported by existing research and reveal a number of distinctive conclusions. Past researchers have cited the importance of trust between microsystems
(Stoner & Angell, 2006); however, this study points to the importance of including caregivers as valued members of the collaborative team. When this occurred, caregivers seemed to be more pleased with the services provided. On the contrary, caregivers who felt ignored or misunderstood by service providers often took their child’s care into their own hands. Based on these findings we recommend that all programs incorporate family/caregiver members into their meetings and planning processes. The perceived helpfulness or unhelpfulness of formal supports may have implications for how caregivers assign beliefs and meaning to their lived experiences. Our findings substantiate the limited literature surrounding the inclusion of spirituality in coping (Bristol, 1984; Coulthard & Fitzgerald, 1999). Caregivers’ narratives further demonstrated spirituality’s role as a useful coping tool. Furthermore, the use of personal beliefs and spirituality created a path toward making meaning of this lifelong disorder. We suggest professionals assist caregivers in identifying their spiritual resources to cope with the psychological, familial, social, service, or economic challenges they face. Professionals are encouraged to attend continuing education opportunities to learn how to incorporate spirituality into their work with these families. No doubt, caring for a child with a disability is a difficult economic task. Past researchers have described caregivers’ frustrations with time constraints, costs of interventions, and employment restrictions (Gray, 2002; Jabrink, Fombonne, & Knapp, 2003). This study’s qualitative findings confirm the presence of these economic challenges. The reported economic strain was noted to directly impact caregivers’ psychosocial well-being. Financial struggles, such as credit problems or excessive expenses, were coupled with narratives of frustration. Thus, it may be vital for professionals to understand the integration of financial security into the family’s biopsychosocial-spiritual and ecosystemic dimensions. It is also important that they consider these elements with a focus on the present as well as on the future. Our findings confirm that caregivers of children with autism have anxiety about their child’s future (Gray, 2002). With more coordinated treatment plans and ecosystemically sensitive processes, living with autism does not have to be a lonely experience. There are many benefits to caring for a child with special needs, as reported by the caregivers in this study. These benefits may either become muted or amplified based on how the informal and formal support persons who surround them react and respond to their needs. Psychoeducation and continued research is needed to
Qualitative implications of autism caregiving 33
help identify the ways our society can further invest in helping these families to thrive.
Future research
Given the limited number of qualitative studies about caregivers’ experiences of parenting children with autism, qualitative research incorporating a more diverse sample is needed to enrich the available literature. Specifically, future researchers could incorporate fathers’ lived experiences and those of caregivers of girls diagnosed with autism. The autism literature is limited in these areas since women serve as caregivers more often than men, and boys are more likely than girls to be diagnosed with the disorder (American Psychiatric Association [APA], 2000). Future studies addressing demographics (e.g., socioeconomic status, age, race, etc.) could enhance the available information by investigating comparative similarities and differences among caregivers’ phenomenological experiences with regard to resources, support, and coping strategies. Lastly, future research addressing the usefulness of multidimensional approaches and integrated models of care is needed. The systemic and ecological findings of this study support the use of comprehensive interdisciplinary assessment processes and intervention plans. Using a mixed method approach to study the effectiveness of models of care when multidisciplinary teams of professionals create t
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