Caring for an individual with autism dis (1)

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Journal of Intellectual and Developmental Disability
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Caring for an individual with autism disorder: A
qualitative analysis
a

a

a

Kennet h W. Phelps , Jennif er L. Hodgson , Susan L. McCammon & Angela L. Lamson

a

a

East Carolina Universit y, USA
Published online: 30 Jan 2014.

To cite this article: Kennet h W. Phelps, Jennif er L. Hodgson, Susan L. McCammon & Angela L. Lamson (2009) Caring f or an
individual wit h aut ism disorder: A qualit at ive analysis, Journal of Int ellect ual and Development al Disabilit y, 34: 1, 27-35
To link to this article: ht t p: / / dx. doi. org/ 10. 1080/ 13668250802690930

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Journal of Intellectual & Developmental Disability, March 2009; 34(1): 27–35

Caring for an individual with autism disorder: A qualitative analysis*

KENNETH W. PHELPS, JENNIFER L. HODGSON, SUSAN L. MCCAMMON &
ANGELA L. LAMSON

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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 developments 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 understanding of the caregiver experience’’ (p. 109).
Theoretical framework
In the present study, the researchers used a
biopsychosocial-spiritual theoretical framework (Engel, 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: kwp0915@ecu.edu
ISSN 1366-8250 print/ISSN 1469-9532 online ª 2009 Australasian Society for the Study of Intellectual Disability Inc.
DOI: 10.1080/13668250802690930

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K. W. Phelps et al.

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 conceptually with the present study’s qualitative phenomenological 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; Holroyd & McArthur, 1976; Konstantareas & Homatidis, 1989; Phelps et al., in press; Sharpley & Bitsika,

1997; Trute, 2003; Wolf et al., 1989) have contributed to understanding the experiences of caregivers, 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.

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 respondents (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 ¼ 6.53) (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 prepaid return envelope. The informed consent document 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 measures 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 questions provided a general framework for reports,
allowing parents the freedom to share experiences
without restricting their responses.

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 participants were solicited who were the main caregiver/

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

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Qualitative implications of autism caregiving
the qualitative reports to acquire an initial sense of
the content, (2) Significant statements were extracted 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 summarise the findings concisely.
Phenomenology supports the ideology that investigators’ preconceived notions, beliefs, and biases may
influence their interpretation of data (Boss, Dahl, &
Kaplan, 1996; Creswell, 1998). Therefore, the researchers, a principal investigator, and triangulated
investigator recorded bias statements before beginning 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 anticipated findings were evident in the results. Investigators 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 significance, 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 throughout 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

29

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 understanding 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 participants seemed to have experienced altruistic benefits 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 described feeling exhausted and stressed with regard to
their parenting responsibilities. Caregivers wrote, ‘‘It
has been very stressful all around’’ and ‘‘Emotionally, 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 diminished due to the pressures and expectations placed
upon them by themselves and others. Another
specific challenge contributing to caregivers’ psychosocial 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

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K. W. Phelps et al.

surrounding the ambiguity about autism’s origination. 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.

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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 availability 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 responsibilities. 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 maximum time and energy due to the presence of the
disability. Caregivers also reported that their relationships 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 relationships 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 specifically address the social implications of having a
child with autism, the open-ended nature of the
qualitative questions led many caregivers to spontaneously 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 information about their child’s diagnosis, discussing challenges and strengths, and sharing stories with
families in similar situations. These new friends
and acquaintances provided hope and encouragement 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 understanding 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.’’

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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 community assistance programs, providing home and community 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, approximately the same number viewed these supports as challenging or unhelpful. These caregivers
thought that the public school system and

31

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 providers 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 educational systems.
Cluster five: Spiritual benefits
This cluster is used to describe the spiritual benefits
of caring for a child with autism disorder. Approximately 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 spirituality 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 mentioned 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.

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K. W. Phelps et al.

The sixth cluster is used to describe the financial
challenges faced by many caregivers of children with
autism. The specialised services and accommodations 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.

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 common theme among 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 description (see Table 1).

Cluster seven: Focus on future

Discussion

The last thematic cluster is used to identify
caregivers’ thoughts and feelings about the future.
Approximately 20 narratives supporting the development 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 difficulties and challenges each day. Other worries for
caregivers included the decisions they were making
for their child’s services and level of autonomy. A

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

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Cluster six: Economic challenges

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.

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Qualitative implications of autism caregiving
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

33

(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

34

K. W. Phelps et al.

help identify the ways our society can further invest in
helping these families to thrive.

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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 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 Undergraduate 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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