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Journal of Intellectual and Developmental Disability
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Caring for an individual with autism disorder: A
qualitative analysis
Kennet h W. Phel psa, Jennif er L. Hodgsona, Susan L. McCammona & Angel a L. Lamsona a
East Carol ina Universit y, USA Publ ished onl ine: 30 Jan 2014.
To cite this article: Kennet h W. Phel ps, Jennif er L. Hodgson, Susan L. McCammon & Angel a L. Lamson (2009) Caring f or an individual wit h aut ism disorder: A qual it at ive anal ysis, Journal of Int el l ect ual and Devel opment al Disabil it y, 34: 1, 27-35 To link to this article: ht t p: / / dx. doi. org/ 10. 1080/ 13668250802690930
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Caring for an individual with autism disorder: A qualitative analysis*
KENNETH W. PHELPS, JENNIFER L. HODGSON, SUSAN L. MCCAMMON &
ANGELA L. LAMSON
East Carolina University,USA
Abstract
Background Caregivers in this qualitative study reported the multidimensional implications of having a child with autism on their family’s lives and overall functioning.
Method The Effects of the Situation Questionnaire (Yatchmenoff, Koren, Friesen, Gordon, & Kinney, 1998) was used to gather qualitative data from 80 caregivers. Colaizzi’s (1978) phenomenological data analysis method was used to analyse the caregivers’ written narratives. Biopsychosocial-spiritual, systemic, and ecological theoretical lenses were used to conceptualise the recorded experiences.
Results Seven thematic content areas emerged from the caregivers’ data. They include: psychological implications, familial implications, social implications, services, spiritual benefits, economic challenges, and focus on the future of having a child diagnosed with autism.
Conclusions The results of this study offer valuable insight into how helping professionals may attend to the biological, psychological, social, and spiritual dimensions of those caring for an individual with autism.
Keywords:autism, caregiving, biopsychosocial-spiritual, ecological, systemic
Introduction
It was not until the mid-1970s that researchers began monitoring the psychosocial implications of autism disorder on primary caregivers (e.g., Featherstone, 1980; Gray, 2002; Holroyd & McArthur, 1976; Koegel, Schreibman, O’Neill, & Burke, 1983; Sharpley & Bitsika, 1997; Wolf, Noh, Fisman, & Speechley, 1989). Over time, researchers have targeted caregivers’ psychosocial well-being, but have primarily focused on the associated pathology (Holroyd & McArthur, 1976; Sharpley & Bitsika, 1997; Wolf et al., 1989); they identified that many caregivers of children with autism exhibit high levels of anxiety and depression, partly related to the behavioural episodes and communication difficulties of their children with autism.
It is only recently that researchers have begun to inquire about enriching caregiver outcomes (Bayat, 2007; Hastings et al., 2005; Phelps, McCammon, Wuensch, & Golden, in press), identifying the increased family connectedness and positive devel-opments that coexist for some caregivers who have a
child with autism. Positive outcomes may be partly due to the enlistment of both informal and formal supports, including spiritual guidance. According to several investigators, informal and formal supports (e.g., family assistance, spirituality, and services) help to strengthen caregivers’ emotional health and serve as useful coping tools through life transitions (Bristol, 1984; Konstantareas & Homatidis, 1989; Trute, 2003). For some, spirituality provides a valuable means of guidance and purpose throughout the challenging experience of having their children diagnosed with autism (Bristol, 1984; Coulthard & Fitzgerald, 1999). As noted by Konrad (2006), deeper understanding of the gains caregivers extract from adversity contributes to ‘‘the complexity, richness, and fuller appreciation of our understand-ing of the caregiver experience’’ (p. 109).
Theoretical framework
In the present study, the researchers used a biopsychosocial-spiritual theoretical framework (En-gel, 1977; Wright, Watson, & Bell, 1996) to build an
*This manuscript was accepted under the Editorship of Roger J. Stancliffe.
Correspondence: Kenneth W. Phelps, Department of Child Development and Family Relations, East Carolina University, 612 East Tenth Street, Greenville, NC 27858, USA. E-mail: [email protected]
ISSN 1366-8250 print/ISSN 1469-9532 onlineª2009 Australasian Society for the Study of Intellectual Disability Inc. DOI: 10.1080/13668250802690930
appreciation for the effects of autism on caregivers’ physical, psychological, social, and spiritual health. A systemic lens (Jackson, 1957) was also used to help conceptualise relational and communication data. Lastly, human ecology theory (Bronfenbrenner, 1979) was the part of the framework used to interpret references to formal and informal supports, such as school, services, spirituality, religion, or extended family members, and the role they play in the caregiving experience.
Each of these theoretical components fits concep-tually with the present study’s qualitative phenom-enological research design. As individuals with autism have unique characteristics, interests, and deficits, similarly, family systems in which these individuals operate are also distinctive. Quantitative researchers (e.g., Bayat, 2007; Bristol, 1984; Hol-royd & McArthur, 1976; Konstantareas & Homati-dis, 1989; Phelps et al., in press; Sharpley & Bitsika, 1997; Trute, 2003; Wolf et al., 1989) have con-tributed to understanding the experiences of care-givers, but more investigation is needed to grasp a richer understanding of the demands, needs, and experiences that are grounded in real life stories told about caring for a child with autism. Using a qualitative research design, our purpose was to study caregivers’ lived experiences while placing them in a relational, eco-systemic context.
Method
Research design
The present qualitative study was part of a mixed method investigation conducted by Phelps et al. (in press) designed to assess stress, enrichment, and growth in caregivers of children with autism disorder. A phenomenological qualitative research design was employed to locate the essential description behind caring for a child with autism. To achieve this level of understanding, researchers studied the meanings related to each significant statement, developed thematic clusters that honoured the shared meanings, and integrated the essence of the narratives into the phenomenological event’s exhaustive description (Creswell, 1998). This study received approval from the University and Medical Center Institutional Review Board prior to data collection.
Participants
Data were collected from members of the Autism Society of North Carolina. A sample of 295 parents of children with autism was selected. Study partici-pants were solicited who were the main caregiver/
parent of an individual with a primary diagnosis of autism disorder. A total of 80 parents completed the study, a 27% return rate. Sharpley and Bitsika (1997) received a similar return rate (20%) in their study of caregivers and noted that it is typical of most anonymous questionnaires. Almost all of the respon-dents (97%) were mothers.
Based on caregiver reports, the individuals with autism ranged in age from 3 to 35 years old, with a mean of 10.75 years old (SD ¼6.53) (Phelps et al., in press). The majority fell within the child or adolescent age range; however, two were over the age of 23, but were included as they continued to live at home. Eighty-nine percent of these individuals with autism were male.
Data collection
To protect confidentiality, a parent advocate from the Autism Society of North Carolina applied labels to pre-made research packets. Packets included an informed consent document, measures, and a pre-paid return envelope. The informed consent docu-ment detailed the nature of the study and participants’ rights. The parent advocate included a brief letter informing parents of the anonymity of completing measures, the importance of the mea-sures for research dealing with parents of children with autism, and the requested time period to complete the measures.
Although caregivers were sent three measures in the initial investigation, only a subset of the overall measures, the Effects of the Situation Questionnaire (ESQ; Yatchmenoff, Koren, Friesen, Gordon, & Kinney, 1998), was used to evaluate the qualitative data. This measure included three open-ended questions used to capture participants’ perspectives on stress, enrichment, usefulness of services, and overall family functioning. Parents were asked to read and provide written responses to the following questions: (1) In what ways have you been affected by the situation with your child?, (2) How have services affected how you feel about the situation with your child?, and (3) Over the last 6 months, what has changed in the way you feel about the situation with your child? These open-ended ques-tions provided a general framework for reports, allowing parents the freedom to share experiences without restricting their responses.
Data analysis and rigor
Participants’ data were analysed using Colaizzi’s (1978) method of phenomenological data analysis. The following steps were used: (1) Investigators read 28 K. W. Phelps et al.
the qualitative reports to acquire an initial sense of the content, (2) Significant statements were ex-tracted and duplicate statements were excluded, (3) Meaning statements were created for each significant statement, (4) Meaning statements were collapsed into thematic clusters reflecting shared themes, and (5) An exhaustive description was written to sum-marise the findings concisely.
Phenomenology supports the ideology that investi-gators’ preconceived notions, beliefs, and biases may influence their interpretation of data (Boss, Dahl, & Kaplan, 1996; Creswell, 1998). Therefore, the re-searchers, a principal investigator, and triangulated investigator recorded bias statements before begin-ning the data analysis. The triangulated investigator was a second researcher added to the data analysis process to approach data from a different perspective. Recording of bias statements by both investigators helped to identify prior assumptions that might occlude the interpretation of the data. Investigators anticipated finding that the availability of supports would help ease caregiver strain and reports would include both stress and enrichment. These antici-pated findings were evident in the results. Investiga-tors tracked their biases carefully by double-checking, through use of a peer debriefer, to make sure that all results could be traced back to raw data.
Additional verification strategies included use of a peer debriefer, reflexive journal, and maintenance of an audit trail. Specifically, the peer debriefer, an objective researcher, met with the triangulated investigator and principal investigator throughout the analyses to resolve any discrepancies in signifi-cance, meaning, or thematic clustering. Second, investigators recorded ongoing themes in a reflexive journal, ensuring they did nothing to block the ability to interpret the raw data according to Colaizzi’s (1978) analysis process. A last verification strategy used was an audit trail, which recorded trends in the data and detailed accounts of how data were analysed by investigators. These methods were used through-out the study to preserve the data’s integrity, increase trustworthiness of its findings, and maintain the study’s rigor (Lincoln & Guba, 1985).
Results
The resulting seven thematic clusters are presented independently. However, we encourage researchers to consider each cluster’s interconnectedness.
Cluster one: Psychological implications
The first thematic cluster is used to describe the emotional, cognitive, and behavioural implications of
having a child diagnosed with autism. Approximately 20 caregivers reported that their experience with autism resulted in benefits. They found that their caregiving role allowed them to gain psychological strengths, including higher levels of selflessness, greater compassion for others, and a stronger sense of peace during times of uncertainty. One caregiver wrote, ‘‘We are better, more patient, and under-standing towards life in general. It has changed the big picture and put life into perspective.’’ They revealed a remarkable ability to refocus their energy and locate strengths and abilities largely untapped before autism came into their lives. For instance, one caregiver wrote, ‘‘It (autism) has opened my eyes to a lot of different aspects of life. I have become much stronger and have a whole new respect for my son.’’ Another benefit reported was the optimism felt when advocating for their child and other children with similar developmental disabilities. Some parti-cipants seemed to have experienced altruistic bene-fits from the ‘‘advocacy role’’ within multiple ecological contexts, including church, community programs, and the educational system. For instance, one caregiver stated, ‘‘Being involved with the local Autism Society’s effort to educate the public about our kids and being involved in program development gives me hope and peace. It’s fulfilling to think that when my son reaches adulthood, the public may be as knowledgeable and accepting about autism as they are about other mental handicaps.’’
As much as caregivers reported benevolent and personal gains in their caregiving role, they also found it difficult to cope with the overall emotional demands. Feelings of sadness, hopelessness, and even depression were reported. Respondents de-scribed feeling exhausted and stressed with regard to their parenting responsibilities. Caregivers wrote, ‘‘It has been very stressful all around’’ and ‘‘Emotion-ally, it is the single most challenging event in my life.’’ Although these reports of depression, stress, and anxiety are already well documented in the literature, reports of lowered self-confidence seem to have been overlooked. Self-confidence among the current study’s participants was reportedly dimin-ished due to the pressures and expectations placed upon them by themselves and others. Another specific challenge contributing to caregivers’ psycho-social strain was the excessive time commitments placed upon them. Caregivers believed the large amounts of time devoted to being a caregiver compounded their stress, frustration, and lowered self-confidence.
The final psychological challenge reported was the lack of answers regarding the disorder’s biological etiology. Caregivers reported mixed emotions
surrounding the ambiguity about autism’s origina-tion. For instance, one caregiver wrote, ‘‘My child’s autism makes me want to laugh to keep from crying and sometimes I am hurt because I feel like I need answers, but there is no one to answer me.’’ This search for ‘‘why?’’ was echoed through several participant self-reports.
Cluster two: Familial implications
The second thematic cluster is used to describe the familial implications of having a child diagnosed with autism. Family is defined in this cluster as including those relationships within the nuclear family system (i.e., child-caregiver, sibling dyad, and marital dyad), but not limited to those living together. Ten caregivers reported that having a child with autism built stronger connections among family members. One way caregivers viewed their family’s situation positively was by adjusting outings to make them fun for the whole family. Caregivers felt their child was an integral part of family functioning and should be incorporated into the family’s activities. Another relational benefit involved caregivers having a greater sense of value regarding progress and achievements of all their children. One caregiver wrote, ‘‘Although I never wanted a life of therapy sessions, tantrums and stress, my overall values have been refined and strengthened due to my son’s autism. Now I truly appreciate my three children and their every accomplishment.’’
Although many caregivers felt they were able to successfully juggle the attention needed by a child with autism and by their typically developing children, over 20 caregivers described family life as being a constant struggle. Caregivers’ time avail-ability may play a large role in the adjustment of typically developing siblings of children with autism disorder. For instance, the participants’ reported that the child with autism demanded more attention and care, thereby reducing time spent with the typically developing sibling, other family members, or respon-sibilities. This was a common theme for caregivers in the present study. Caregivers reported siblings often felt jealous when the caregiver was spending time caring for the child with autism. This may not be a purposeful act by the caregivers, but a natural systemic occurrence when one child requires max-imum time and energy due to the presence of the disability. Caregivers also reported that their rela-tionships with their spouse or partner were strained by the differing discipline techniques, limited time for one another, and oftentimes incompatible coping styles that each partner accessed when stressed.
Besides the familial influences on the marital and sibling relationships, the age and physical size of the individual with autism naturally forced the families to modify their methods of interacting. Caregivers reported that the entire family was challenged by puberty. For instance, one mother wrote, ‘‘My son has begun puberty and there have been emotional and behavioural changes in him that have affected us all. He is now a bigger person to deal with even though he doesn’t realise his strength and size.’’
Cluster three: Social implications
The third thematic cluster is used to illustrate reported social benefits and challenges associated with caring for a child with autism. Social is defined in this cluster as including those relation-ships and larger societal interactions occurring outside the nuclear family system, such as friends, other parents, church, or extended family. Although this study was not conducted to specifi-cally address the social implications of having a child with autism, the open-ended nature of the qualitative questions led many caregivers to spon-taneously write about how they believe it affected them this way.
Five caregivers wrote how having a child with autism allowed them the opportunity to meet others who shared in their experiences. They commented that it helped to hear the stories of other parents of children with autism and reported feeling supported when they were open, versus being guarded, about their child’s condition. The ‘‘open’’ nature of this support system allowed caregivers the opportunity to access assistance. Openness in this context included attending support groups, sharing informa-tion about their child’s diagnosis, discussing chal-lenges and strengths, and sharing stories with families in similar situations. These new friends and acquaintances provided hope and encourage-ment for the future.
Where some caregivers felt autism opened avenues to help form friendships, many others felt autism diminished these opportunities. Some caregivers felt society was helpful and received their family with openness, whereas others felt society lacked under-standing or care about their situation. Eleven caregivers held the complaint that society lacks knowledge about what autism is and how it manifests in children. One participant wrote, ‘‘We have been faced with some uncomfortable situations. For instance, church, in-laws, etc., who do not know what autism is or really care what we are going through as a family.’’
30 K. W. Phelps et al.
Cluster four: Services
It was not surprising that services surfaced as a theme in this study since one of the open-ended questions focused on the usefulness of formal supports. This cluster is used to describe caregivers’ thoughts about formal supports and gives specific examples of services identified by caregivers that either assisted or hindered progress and/or understanding of their children’s disorder.
Approximately 30 out of 80 caregivers enrolled in this study reported that services and formal supports helped them better understand their children, eased stressors placed on the family, and gave them hope that their children with autism would have a more productive future. Many of these caregivers believed the key to successful services were dedicated, caring teachers and instructors. One caregiver wrote, ‘‘His teachers are so great . . . taking severely affected children and making them stars! I’ve seen the very best of people give 100% to help him.’’ Caregivers reportedly were most pleased when they felt well informed about their child’s diagnosis and his or her progress. One caregiver wrote, ‘‘He is making progress. We are proud of him. We have found intervention programs that really make sense to address the developmental and emotional deficits. We are excited and feel empowered and have more hope for the first time.’’ Of course, service providers cannot ensure that interventions will always be successful, but it is important to realise that their success has implications for caregivers’ overall view of services.
Other formal supports that were reported as beneficial were those that functionally assisted caregivers in their day-to-day lives, such as commu-nity assistance programs, providing home and com-munity support or respite care. Caregivers reported that these services decreased their stress levels, added to the normalcy of family life, and allowed the child with autism to participate in activities they enjoyed. For example, one caregiver noted, ‘‘He is truly a blessing to us and we have found encouragement from other families with similar situations. Our church even has supported us with special needs ministry, a Sunday school for special needs kids.’’ The openness of the venue to accommodate the child with autism and his family allowed for mutual acceptance and support.
Just as approximately 30 caregivers in this study reported the helpfulness of formal supports, ap-proximately the same number viewed these sup-ports as challenging or unhelpful. These caregivers thought that the public school system and
community offered poor, inappropriate choices for children with autism. This frustration with the educational component of their microsystem led many caregivers to home school, place their children in private schools, move out of the state, or to be without services due to geographical distance from service providers.
Caregivers often first come into contact with service providers when seeking a diagnosis for their child (Stoner et al., 2005). This journey to diagnosis is often followed by entrance into the special education system. Once the child transitioned into the special education system, caregivers’ frustrations were unmistakable. Many caregivers did not feel heard or acknowledged by educational professionals. This may be one of the most significant findings of this study, seeing as communication and trust of professionals is a gauge of parental satisfaction (Stoner & Angell, 2006). Caregivers reported that plans or interventions were ‘‘on paper’’, but never followed through.
Other caregiver dissatisfactions with service provi-ders were identified in a range of areas. Caregivers expressed the need for more education, training, and funding in the area of law and criminal investigation of abuse of children with autism. Another participant expressed, ‘‘Professionals in the medical field lack the patience and understanding of dealing with persons with autism.’’ The overwhelming conclusion from caregivers was the need for more education for some providers in the medical, judicial, and educa-tional systems.
Cluster five: Spiritual benefits
This cluster is used to describe the spiritual benefits of caring for a child with autism disorder. Approxi-mately 10 caregivers wrote about their use of spirituality in coping and caring for their child. Caregivers reported being thankful to ‘‘God’’ for their children and felt that their spiritual life was reinforced by their experiences. The overwhelming majority of these participants described their spiri-tuality as a means of strength and growth during the caregiving process. Having a sense of spirituality also increased caregivers’ abilities to cope. One caregiver wrote, ‘‘He’s a walking miracle and I thank God for him everyday. I wouldn’t give up one minute of the past 8 years, not even the trying and stressful times. The joys increase daily.’’ Only one caregiver men-tioned feeling challenged by the church setting through awkward social situations. Specifically, this caregiver felt church settings were ‘‘uncomfortable’’ due to a lack of understanding and care about autism in this context.
Cluster six: Economic challenges
The sixth cluster is used to describe the financial challenges faced by many caregivers of children with autism. The specialised services and accommoda-tions that a child with special needs may necessitate was an economic concern for caregivers. Caregivers cited economic burden from the cost of services or interventions. Some caregivers even attributed their credit difficulties with the expense of meeting their child’s needs for services. For instance, once caregiver wrote, ‘‘Every aspect of my life is affected. My relationships with others are limited, my job, my energy, and my finances. We have absolutely no credit. The expense of trying to meet her needs is endless. There is never enough help.’’ Furthermore, having a child with autism limited caregivers’ opportunities in the work force due to time constraints and a lack of available services for the child.
Cluster seven: Focus on future
The last thematic cluster is used to identify caregivers’ thoughts and feelings about the future. Approximately 20 narratives supporting the devel-opment of this theme included the process of acceptance for and uncertainties about the future. For instance, a mother wrote, ‘‘The hardest part has been the stress and anxiety over his future. I go to bed thinking about him and he’s my first thought on waking.’’ The worry process was constant for caregivers because they reported facing new difficul-ties and challenges each day. Other worries for caregivers included the decisions they were making for their child’s services and level of autonomy. A
caregiver expressed her worry in this way, ‘‘Worry about his future. Worry that I’m making the right decisions to help him fulfill his potential. Worry that I haven’t done enough to expose him to different therapists.’’
Although worrying about the future was a com-mon theme acom-mong all participants, many caregivers reported being able to arrive at some level of acceptance with their child’s condition. For instance, one caregiver wrote, ‘‘I have come to accept all of my child’s differences from other children. I have quit focusing on does he have friends or how other children perceive him. I’ve come to terms that he is who he is.’’ The notion that caregivers’ hopes for a typically developing child can be substituted by a new vision of a child who is accepted despite differences was a unique finding in this study. A summary of the study’s findings and all thematic content areas are presented in an exhaustive descrip-tion (see Table 1).
Discussion
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 land-scape of caregivers’ experiences is needed. New conclusions were drawn associated with the psycho-logical 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 self-confidence, 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 relation-ships 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’ psycholo-gical 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 adjust-ments 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 diag-nosis, 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, care-givers 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 spiri-tuality’s role as a useful coping tool. Furthermore, the use of personal beliefs and spirituality created a path toward making meaning of this lifelong dis-order. 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 de-scribed caregivers’ frustrations with time constraints, costs of interventions, and employment restrictions (Gray, 2002; Jabrink, Fombonne, & Knapp, 2003). This study’s qualitative findings confirm the pre-sence of these economic challenges. The reported economic strain was noted to directly impact caregivers’ psychosocial well-being. Financial strug-gles, 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 dimen-sions. 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
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 in-corporate 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 re-gard 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 comprehen-sive interdisciplinary assessment processes and inter-vention plans. Using a mixed method approach to study the effectiveness of models of care when multidisciplinary teams of professionals create the treatment plan with the family would lend more support to this study’s conclusions. A mixed method study would allow both quantitative and qualitative methods to inform the results, moving toward richer data collection and addressing some of the diversity issues often present with a limited sample size.
Author note
This research was supported in part by grants from the East Carolina University Office of Undergradu-ate Research. There are no restrictions on free access of publication of this research data. Additionally, there are no financial or non-financial conflicts of interests for the authors. This paper is the qualitative portion of a two-part study, which is being published as a separate submission in a forthcoming edition of this journal.
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