Psych Educ, Document ID: PEMJ0, doi: 10.5281/zenodo.

6819669, ISSN 2822-4353

Research Article

The Lived Experiences of Thriving Family Caregivers of Persons

with Autism Spectrum Disorder

Ma. Rosario L. Nepomuceno*

For affiliations and correspondence, see the last page.

Abstract
Autism spectrum disorder is a lifelong disease, and because of its nature, the adverse effects on the
quality of life of families and patients are evident. The consequences of the disease can be far-
reaching for their families, who often end up supporting and caring for them. Hence, this study would
dig in exploring the lived experiences of thriving family caregivers of persons with autism spectrum
disorder. The interpretative phenomenological analysis approach was utilized by the researcher to
make sense of their lived experiences. The results identified four major themes: facing diagnosis
challenges, handling stress of caregiving, holding on to faith and growing holistically. In addition
to the major themes are the eight subthemes: having limited knowledge about ASD, handling
physical stress, handling emotional stress, gaining confidence, finding meaning through spirituality,
broadening their sense of understanding, accepting their family members’ condition, and gaining a
greater sense of fulfillment. With the challenges and stress of caregiving, it was revealed that most
family caregivers cope by holding on to their faith which allowed them to see things from a
different perspective. Rather than dwelling on the stress of caregiving, they focused on their faith
that they are in this situation for a reason. It can be concluded that even though family caregivers face
various challenges in caregiving their family members with ASD, they still can thrive and have a
meaningful life.

Keywords: Autism Spectrum Disorder, Thriving Family Caregivers, Interpretative Phenomenological

Analysis

Introduction Engineering, and Medicine, 2016), it is believed that

Autism spectrum disorder (ASD) falls into the
category of neurodevelopmental disorders and appears
early in life, impair social interaction and
communication, such as difficulties in responding to
social interactions or deficits in understanding
nonverbal communication. Moreover, people with
ASD have reduced behavioral functions, such as
stereotype behavior or failure to adapt to new
circumstances (Lucero, 2018). People with ASD have
diverse care needs for a range of comprehensive
programs, which include health promotion,
personalized treatment, rehabilitation services and
collaboration with other sectors, such as educational,
occupational, and social sectors (Benitez et al., 2019).
Given such, they may require the presence of a family
caregiver. By definition, a family caregiver is usually a
family member or a close relative who provides
support or care to a patient, promotes their well-being
and assists in various tasks and activities (Dixe et al.,
2019).
Since family caregivers perform several roles in the
treatment of people with autism spectrum disorder,
including day-to-day treatment, supervising
medications, hospitalization of the patient and
financial needs (National Academies of Sciences,
taking care of children with ASD is challenging and
has an effect on family life (Lucero, 2018). However,
according to the studies of Gorlin et al. (2016) and
Gobrial (2018), most of the studies are only limited to
the experiences of mothers in caregiving for a family
member with autism spectrum disorder, hence,
participation from more of other types of family
members would broaden the scope of the findings. In
addition, further study extending to a range of ages,
such as adolescents and adults with ASD would be
beneficial in providing more experiences from other
age groups (Gobrial, 2018), as presenting problems of
the disorder differ significantly depending on the
individual’s developmental and level and
chronological age (Quilendrino et al., 2015).
Additionally, the awareness of mental health,
particularly ASD, is still growing in the Asian region,
and therefore, it is still in the early stages of getting the
needed support. Hence, it is vitally important to
establish how support can be given to the autism
community in Asian countries that are under-
investigated (Ilias et al., 2018). Particularly, research-
based on family caregivers’ experiences of people with
ASD in the Philippines is mostly unexplored and
rarely discussed; since in the existing health care
system, the patients as direct recipients of care and
attention are the main priority and center of assessment

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(Gargar et al., 2017, as cited in Alvarez et al., 2017).
It is for this reason that this study on the lived
experiences of thriving family caregivers of persons
with ASD and how these lived experiences create
meanings in their lives were explored. Furthermore, it
also intends to understand how family caregivers
thrive despite the challenges and stress of caregiving
for their family members with ASD.
Research Questions
The main objective of the study is to explore and
capture the meanings of the lived experiences of
family caregivers of persons with an autism spectrum
disorder. Specifically, this research sought to answer
the following questions:
1. What are the lived experiences of family caregivers
of persons with autism spectrum disorder?
2. How do the lived experiences of family caregivers
of persons with autism spectrum disorder create
meanings in their lives?
Literature Review
This section presents a detailed review of previous
studies of the lived experiences of family caregivers of
people with autism spectrum disorder that could also
help in providing knowledge of the study at hand.
Autism
is a spectrum disorder, which means that the
symptoms differ in number and degree across
individuals (Wong, 2018). It is also defined as a
condition characterized by a chronic impairment in
social communication and social interaction. While the
severity in all patients with ASD is not the same, the
clinical manifestation is distinguished by impairments
and deviations in social-emotional functioning, verbal,
and nonverbal communication abilities as well as
restricted interests and behaviors in general (Ozgur et
al., 2018). Moreover, presenting issues of the disorder
vary significantly depending on the developmental
level and chronological age of the person. While early
detection is promoted by healthcare professionals, the
literature consistently demonstrates a significant
difference between age at first parental concern and
age at first ASD diagnosis. Early identification and
intervention are crucial in altering the debilitating
course of autism (Quilendrino et al., 2015). As the
prevalence of persons with ASD has risen, a new
population of families has appeared that shows more
challenges as our awareness grows. Despite the fact
Ma. Rosario L. Nepomuceno
that the characteristics of ASD are similar across
cultures, family experiences of caring for a
child/individual with ASD may differ (Gobrial, 2018).
It was suggested that a diagnosis of autism and the
severity of the impairments could act as external
stressors to the caregivers and family (Cloete and
Obaigwa, 2019). Families have also experienced a
considerable lack of verbal and nonverbal
communication with their child. The child’s lack of
communication left families wondering what the child
was thinking. The family members were concerned
that if he or she became ill, they would not be able to
support their child due to the inability of the child to
communicate basic needs (Gorlin et al., 2016).
Nevertheless, there are also studies that have also
explored positive findings relating to the experience of
raising a child with autism. Families revealed that the
life of caring for children with autism encouraged
family cohesion, as families cared for their child, they
experienced compassion for the child and for each
other over time. This was comparable with the positive
outcomes revealed in other research that describe
empathy and compassion that the families became
aware of from living with a child with autism (Gorlin
et al., 2016). In spite of the fact that family caregivers
face a strain of dealing with care problems, they can
also gain fulfillment and abilities from providing care
to a loved one, such as developing more optimistic
perspectives on life (Hoefman et al., 2014). It was also
mentioned that learning to recognize the disabilities of
their children, getting support and initiating the role of
advocacy were significant learning phases that are
essential in dealing with the reality of having a child
with ASD (Cloete and Obaigwa, 2019).
Fathers also usually face difficulties from the
diagnosis of their children as they also appear to
experience greater daily stress (Bloom, 2015).
Moreover, siblings are often thought to be good
caregivers, however they experience negativities
during their learning and process. It is proposed that
more attention be paid to their needs and involvement
(Kuo, 2014, as cited in, Alcantara and Castronuevo,
2016). This was also noted in the study of Tozer and
Atkin (2015), since siblings are also involved in
planning or providing care to their brother or sister
with autism, it is also important to recognize, value
and support siblings, so that building positive and
satisfying family relationships for all parties can
therefore be a key to progress in social care.
Considering that there is a lack of knowledge in many
situations regarding ASD in the society, which may
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indicate the parents of children with ASD to face
stigmas, and to be affected by cultural values and/or
experience self-blame for the diagnosis of their child
(Ilias et al., 2018), a basic understanding of the
challenges of ASD is necessary if we are to begin to
get a sense of what the family caregiver experience
might be and how we can help them in the way they
need to be (Siron, 2015).
Philosophical Underpinning
Hermeneutics was described as a process and method
for uncovering and revealing what is typically
concealed in human experience and human relations.
Regarding the study of human experience,
hermeneutics goes beyond the simple definition of
core concepts and essences to look for meanings found
in common life practices (Lopez and Willis, 2004).
Methodology
Research Design
The researcher used a qualitative design and lens of
phenomenology to understand the lived experiences of
family caregivers of persons with autism spectrum
disorder. Phenomenology can be described as a
research approach which seeks to explain the essence
of a phenomenon by exploring it from the perspective
of those who have experienced it. The purpose of
phenomenological research is to explain the meaning
of the experience - both in terms of what was
experienced and how it was experienced (Neubauer et
al., 2019).
Respondents
A total of six respondents agreed to be part of the
study. The immediate family was considered as family
caregivers in this study. This research is not only
limited to the mothers’ lived experiences, since
participation from more of other types of family
members would broaden the scope of the findings. In
addition, it did not only cover a specific age group as it
will also be beneficial providing more experiences
from other age groups.
Other types of social support systems and
neurodevelopmental disorders will be excluded in this
study as it will only focus, specifically, on the lived
experiences of thriving family caregivers of persons
with autism spectrum disorder. Pseudonyms were
assigned to give anonymity to the respondents. This is
generally regarded as an important ethical safeguard as
Ma. Rosario L. Nepomuceno
it prevents the identification of persons who
contributed to the research (Klems, 2008)
Data Collection
An interview was conducted, guided by questions
formulated by the researcher to determine the lived
experiences of the respondents in caregiving for an
autism spectrum disorder patient. The interview was
conducted online/through a telephone interview, this is
to ensure the safety of both the researcher and the
respondents. The interview was semi-structured, and
audio recorded.
Instrument
The respondents were provided with a semi-structured
interview. The questions focus on the lived
experiences of family caregivers of persons with
autism spectrum disorder. The researcher formulated
the interview questions based on the research objective
and research questions; this is to make certain of the
congruence with the study at hand. To also make sure
of the validity and reliability of the instrument, the
researcher had consultation and approval from an
expert adviser and three validators.
Procedure
An informed consent was sent via email or messenger
to the respondents, and they were asked to sign it for
their approval to take part in the study. Since the
interview was conducted online, the interview was
conducted depending on the availability of
the respondents. Before the formal interview, the
researcher tried to establish rapport by having a casual
conversation with the respondents and explained the
purpose of the interview through messenger. The type
of interview that the researcher utilized is a semi-
structured interview. The interviews lasted from 20
minutes to 40 minutes, and in order to provide an
accurate documentation of the interview, a recorder
was used. To provide an in-depth understanding and
exploration regarding the lived experiences of the
respondents, follow-up questions were also asked.
Data Analysis
The gathered information from the conducted
interviews were consolidated, utilized and enclosed in
a comp reh en sive analysis. In terpretativ e
Phenomenological Analysis, or IPA, is a research
method utilized in gathering data which exhibits
respect and is sensitive to the research participants’
lived experiences (Alase, 2017). This method of
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analysis of information is appropriate since it will be of respondents' private or confidential information, the
able to uncover the respondents’ rich experiences. researcher will inform the HAU-IRB immediately.

After the interview, the researcher transcribed all the
gathered information about the family caregivers' lived
experiences. The gathered data was analyzed through
identifying themes to gain a more in-depth
understanding and analysis of the information. The
themes were then grouped together based on their
conceptual similarities. The information was further
synthesized into a simplified form after the researcher
clustered the detail into their themes, and then a
descriptive label was given. A table of themes was also
developed by the researcher. It is a table that includes
direct quotations from the interview which the
researcher believes best captures the essence of the
thoughts of the respondents, and their emotions
regarding the experience of the phenomenon being
explored.
Ethical Considerations
Aside from the informed consent, permission in
recording the interview was asked from the
respondents. To ensure the safety of the respondents,
the interview was conducted online/through a
telephone interview. The purpose and method of the
study were thoroughly explained to the respondents
and that only necessary information was collected in
proportion to the purpose of the study.
Moreover, the information that was provided by the
respondents will be kept strictly confidential and that
research reports or publications will not reveal the
respondents' identity. The researcher will be the only
one to have access to the personal information of the
respondents and will only be used within study
duration. Personal information or other documents
(e.g., audio recording) will be destroyed when no
longer required for the research. Since the data
collection requires the use of translators and validators,
the researcher ensured that the identity of the
respondents were anonymous and that they had only
access within a specified period. It was also assured
that there is no risk directly linked to the respondents
and data collected will be treated with utmost
importance.
Establishing Trustworthiness
This is to ensure that no judgment was made, and that
empathic listening was established as it is a simple
way to do both and shows clear consideration of the
respondents’ thoughts while also helping to build trust.
Building rapport with the respondents also brings the
sense of being heard and consequently established
more meaningful insights about the study.
Results
The Interpretative Phenomenological Analysis (IPA)
was utilized in answering the two main research
questions, “What are the lived experiences of family
caregivers of persons with autism spectrum disorder?”
and “How do the lived experiences of family
caregivers of persons with autism spectrum disorder
create meanings in their lives?” The researcher has
come up with a few sub-themes that eventually
emerged into major themes. Four major themes
emerged from the data analysis:
1) Facing diagnosis challenges, 2) Handling the stress
of caregiving, 3) Holding on to faith, and 4) Growing
holistically. The framework is presented to emphasize
the major themes and subthemes that were obtained
from the analysis of the results of the six respondents.
Table 1. Framework of the major themes and
subthemes of the lived experiences of thriving family
caregivers of persons with autism spectrum disorder
and how their lived experiences create meanings in
their lives.

The respondents were also informed that participation

in the study was voluntary and that they can withdraw
or refuse at any time without any personal
consequences. The study was approved by the HAU-
IRB first. This is to ensure the protection of research
data and protect participants from harms that may
result from breaches of confidentiality. In case of loss Statement of the Problem # 1: What are the lived

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experiences of family caregivers of persons with
autism spectrum disorder?
Facing diagnosis challenges
Several factors, particularly mannerisms, unusual
behavior, and third parties, compelled the family
caregivers to seek professional help, leading to the
diagnosis. Family caregivers shared that most of the
common unusual behavior they have noticed were
flapping of hands, tip toeing, sensitivity to loud
sounds, covering of ears, getting easily distracted, lack
of speech, having no response when being called, and
no eye contact. However, before learning the diagnosis
of their family members, some of the family caregivers
already experienced challenges. For instance, having
limited knowledge of ASD was already a challenge to
them as they are not aware of the signs of ASD, and
even though they already noticed signs/red flags, they
did not think that it is related to the diagnosis of ASD.
This results in not being able to immediately
understand the seriousness of their family members’
condition. Moreover, these signs later pushed them to
seek professional assistance. Such reactions of the
family caregivers show their affection and concern for
the family members.
Having limited knowledge about ASD. Based on the
data that were gathered, some of the respondents
shared that they only have limited knowledge about
autism spectrum disorder, which also prevented them
from understanding the gravity of the situation and
taking immediate action. “Raffy”, one of the family
caregivers, shared that he did not realize immediately
that the mannerisms or unusual behavior he and his
wife noticed are already signs of ASD as they were not
aware between the difference of hand waving and hand
flapping, “...and by that time I didn’t know any better
so hindi ko pa alam what’s the difference between
hand flapping and hand waving (...and by that time I
didn’t know any better so I still didn’t know what’s
the difference between hand flapping and hand
waving.)”
“Nina” who has a family member with high
functioning autism also mentioned that she never
thought that her child has this condition because of the
child’s performance in his preschool as she was not
aware that even though a child excels in school, he or
she can still have ASD as there are levels of ASD,
“...hindi ko talaga inisip na baka nga may condition
siya kasi he was doing good in school eh. (...I did not
really think that maybe he really has a condition
because he was doing good in school.)”
Ma. Rosario L. Nepomuceno
Moreover, most family caregivers had preconceived
notions as they thought that it was only a speech delay
or a speech difficulty and not able to recognize that
their family members had already signs of ASD.
“Sweet” shared, “...Actually hindi ko siya napag-
diagnose kaagad because I thought there’s only speech
difficulty, but my sister already noticed that she
doesn’t have eye contact… (Actually I wasn’t able to
have her diagnosed immediately because I thought
there’s only a speech difficulty but my sister already
noticed that she doesn’t have eye contact…)”
In addition, family caregivers went through denial
which also led to late diagnosis. Based on the gathered
data, “Nina” admitted that aside from the fact that she
was not aware of what ASD was, her child was
diagnosed late because she was still in denial at first,
“He was diagnosed when he was eight. Eight years
old, late diagnosis kasi ano parang in denial pako that
time… (He was diagnosed when he was eight. Eight
years old, it was a late diagnosis because I’m still in
denial that time...)”
Handling the stress of caregiving
In caregiving, the family caregivers experienced
physical and emotional stress resulting from very
demanding circumstances. This stress somehow
affected their life aside from the challenges of
caregiving itself. This stress of caregiving is more
personal in the sense of their emotional and physical
state.
Handling physical stress. Based on the respondents,
what they consider as physically exhausting of
caregiving is going to therapy sessions. Two of the
family caregivers shared that sending their child to
therapy is one of the struggles. “Sweet” further shared
that going to her child’s therapy was the first
challenge, for her and her husband, especially that she
is a working mom and because her workplace is far
from the clinic and because of the limited availability
of therapy sessions offered, “...It’s not easy to book a
slot sa OT lalo na limited slots lang tapos working
mom pako… (...It’s not easy to book a slot in OT
especially that they only have limited slots, plus I’m
also a working mom...)”
Handling emotional stress. Among the different kinds
of stress that the family caregivers had shared,
emotional stress is one of the most cited stress.
“Raffy” emphasized that he was emotionally
challenged about the response of others towards the
situation of a child who is suffering from ASD. It is
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emotionally draining for his part thinking of how
people respond to his child’s condition. He explained
that the way “normal people” respond to situations
wherein the child would manifest inappropriate
behavior or unusual behavior is the most challenging
part for him as there are people who would not tolerate
such behavior, even though they are already aware that
something is not normal, “...Those normal people
already know something is off, something is not
normal but they have this mentality that they would
not just tolerate it and that’s the most challenging...”
It is also emotionally challenging for family caregivers
when the family members are having tantrums or
mood swings. They feel frustrated as they are having
struggles communicating with their child and do not
have an idea what they want. “Leni” expressed,
“Napakahirap and complicated. Nagsa-struggle sa
tantrums and hinuhulaan mo ano gusto niya since hindi
niya ma-express sarili niya verbally. (Very hard and
complicated. Struggling with tantrums and guessing
what he wants because he can’t express himself
verbally.)”
“Nina” also said that although her son is generally a
good boy and seldom shows his tantrums, he also has
moments wherein he requires full attention and asks
repetitive questions or demands for consistent
conversations which really test the respondent’s
patience:
“...Ang kulit. Kapag gusto niya, paulit-ulit kaming
nag-uusap about that, kahit ten thousand times ko ng
sinabi, sige pa rin ulit-ulit pa rin, so sometimes diba
I’m just human and he gets on my nerves sometimes.
(...He’s persistent. When he wants it, we talk about it
several times, even I already said it ten thousand
times, so sometimes I’m just human and he gets on my
nerves sometimes.)”
Furthermore, one of the common fears of family
caregivers is the fear of the child being bullied or
misunderstood. But as the child grows older, the
family caregiver tends to fear or worry about realities
of life. For instance, some family caregivers shared
their fear about their family members’ future. “Sweet”
said that thinking about where to enroll her child or
whether the child can handle college gives her anxiety.
While “Nina” expressed her concern with regards to
his child’s teenage life. She mentioned of how
saddening for her whenever she thinks of his child’s
romantic love in the future considering that it would be
hard to find an opposite sex that would reciprocate the
love of a person who has the condition of ASD:
Ma. Rosario L. Nepomuceno
“...Siguro, that's the point that I’m most worried about
na pag dumating na siya sa stage na yon. Ma-realize
niya gusto niya pala yung other sex and it worries me
because parang sinong magre-reciprocate ng ganung
romantic love sakanya... (...Maybe that's what I'm most
worried about where he will be on that stage. That he
will realize that he’s interested with the opposite sex
and it worries me because who will reciprocate him
romantic love...)”
Holding on to faith
Since faith is not new to the situation of the family
caregivers, family caregivers were able to cope by
holding on to their faith. By holding on to their faith,
they were able to have a different perspective
regarding their situation. Instead of focusing on the
stress of caregiving, they placed more focus on their
faith that there is a reason why they are in this
situation. Because of their faith, it made it easier to
accept their situation amidst the emotional and
physical stress of caregiving and still be able to cling
or hold on to their faith.
Gaining confidence. Some of the family caregivers
manifest a belief to themselves that they can overcome
anything as they had a better way of looking at their
experiences. They believe that they can successfully
play the role of a parent and do things beyond their
limitations or can give more beyond how others can
normally give. “Leni” shared:
“...It means that mas capable ako of sharing more time,
effort and energy and it means that I can proudly say
na I am a strong person and kaya ko or kakayanin
kong ma- overcome kahit ano, especially when it
comes to my child’s needs. (It means that I am more
capable of sharing more time, effort and energy and it
means that I can proudly say that I am a strong person
and I can or I will be able to overcome anything,
especially when it comes to my child's needs.)”
Finding meaning through spirituality. Some family
caregivers expressed the strength of prayer and having
faith in God in helping them get through difficult
times. Most family caregivers hold on to the belief that
there is a reason and a purpose why God gave them
their family members, “Leni” also expressed, “I
believe that everything happens for a reason and may
purpose bakit siya binigay sakin ni God… (I believe
that everything happens for a reason and there’s a
purpose why he was given to me by God...)”
Two of the family caregivers also shared that despite
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the condition of their family members, they still feel
blessed. “Sweet” added that you must accept what God
has given to you and accept the challenges, she also
added that she still feels thankful because her daughter
is not totally disabled compared to others who cannot
walk and speak. On the other hand, “Nina” also
expressed that she believes that God must have trusted
her so much to entrust her son to her:
“Syempre parang, God must have trusted me so much
diba parang he thinks that I’m going to be a good
mother or a good caregiver to my son for giving him to
me kasi he entrusted my son to me, to take care of him
and to raise him. So parang in a way, I feel blessed
talaga in that aspect. (It’s like maybe God must have
trusted me so much, he thinks that I’m going to be a
good mother or a good caregiver to my son for giving
him to me because he entrusted my son to me, to take
care of him and to raise him. So in a way, I feel really
blessed in that aspect.)”
Statement of the Problem # 2: How do the lived
experiences of family caregivers of persons with
autism spectrum disorder create meanings in their
lives?
Growing holistically
Because of the family caregivers’ experiences, they
gained a greater sense of fulfillment and gained a
higher perspective in life, especially their sense of
understanding, not only of their situation or of their
family members’ condition but as well as of others. It
taught them how to be more connected and increased
their compassion for people's experiences. With that,
they were also able to accept their situation and the
condition of their family members and helped them
feel more empathetic with others and appreciative of
what they have.
Broadening their sense of understanding. Prior to the
diagnosis, family caregivers had preconceived notions
or misconceptions, but after they had sought
professional help, learned about the diagnosis, and of
their experiences, their knowledge increased in better
ways of taking care of their family members.
Moreover, the experiences of the family caregivers
allowed them to expand their minds and broaden their
sense of understanding not only of their situation and
their family members’ condition but also of other
people. Most of the family caregivers also shared that
because of their situation, they learned how to become
more understanding and appreciative. This is
highlighted by “Raffy” as he expressed that he learned
how to suspend judgment towards any situation and try
Ma. Rosario L. Nepomuceno
to understand what is going on:
“With all the lessons learned. To a certain degree, I
have a higher perspective now with regard to
everybody… I’ve gained an appreciation for stepping
back from judging and then looking at things that's
really going on. Suspend the judgment, then try to
learn what's going on. Try to appreciate it. Then later
on, you'll be the judge...”
Accepting their family members’ condition. Some of
the family caregivers admitted that they went through
denial as they had a hard time accepting their family
members’ condition. Moreover, they also have dealt
with struggles in caregiving their family members who
have ASD. But along with the process of dealing with
the struggles, they were able to overcome it based on
their faith and by having a support system.
In addition, they have realized that there is no need to
worry about what other people would think and that
seeing their family member who has ASD being okay
and happy is what is important. A noteworthy response
from “Philip”, that even though he has two brothers
who have severe autism, he shared that learning about
the condition of her older brothers did not bother him
at all and that he just learned how to live with how
they live as he never really had to adapt to any
changes for living with someone who has autism since
he have already had his brothers as he grew up, “I
never really had to adapt to any changes for living with
someone who has autism since I have already had my
brothers as I grew up...”
Gaining a greater sense of fulfillment. Family
caregivers gained a greater sense of fulfillment as their
lives became more meaningful and complete. This also
results from having a deeper understanding of their
role as caregivers and as they take care of their family
members with ASD, they show this kind of affection
as manifestations of how they understand the
conditions of their family members with ASD. “Leni”
shared:
“...It means that being able to successfully play the
role of a mother to a son who needs special care,
special attention and special love, yung life ko mas
naging meaningful because it means that I can give
more of myself way beyond how others can normally
give...(It means that being able to successfully play the
role of a mother to a son who needs special care,
special attention and special love, my life has become
more meaningful because it means that I can give
more of myself way beyond how others can normally
give...)”
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Figure 1. Simulacrum of the major themes and
subthemes of the lived experiences of thriving family
caregivers of persons with autism spectrum disorder
and how their lived experiences create meanings in
their lives.
A lotus flower symbolizes overcoming all obstacles on
the path to enlightenment and flourishing. It was used
to represent the themes, as the study's findings indicate
that despite the challenges and stress of caregiving for
family members with ASD, family caregivers were
still able to thrive and live meaningful lives. The upper
part of the lotus flower represents the challenges that
family caregivers experience prior to the diagnosis,
right part represents the stress of caregiving for their
family members with ASD, the lower part represents
how they were able to come the challenges and stress
of caregiving by holding on to their faith, while the left
part represents how their lived experiences create
meanings in their lives which helped them gained a
higher perspective in life and greater sense of
fulfillment.
Discussion
In this study, the noteworthy experiences that family
caregivers have in caregiving family members who
have ASD were composed of four major themes:
Facing diagnosis challenges, handling the stress of
caregiving, holding on to faith, and growing
holistically. With the family caregivers’ experiences,
some of them admitted that at first, they are not aware
that their family members already exhibit signs of
ASD as they do not have enough knowledge of what
ASD is, even though they already noticed unusual
behavior, they did not think that it would be related to
the diagnosis of ASD, which also the reason why some
were diagnosed late. One respondent admitted that she
does not have an idea what autism was since she had
her child at a young age and that although her son was
delayed in speech, she did not think that her son would
have ASD since he excels in school. Moreover, these
Ma. Rosario L. Nepomuceno
unusual behaviors also urged them to seek professional
help which later led to the diagnosis of their family
members. Most family caregivers shared that they are
having difficulty teaching their children as they get
easily distracted and show no eye contact. Families
may struggle to make sense of the behavior of their
child due to a lack of support and proper knowledge
available at the societal level, which may increase
stress levels and delay diagnosis and treatment
planning for the family (Karst and Van Hecke, 2012,
as cited in, Ilias, 2018 ).
Some family caregivers shared that upon learning the
diagnosis of their children, they had a hard time
accepting it. One family caregiver expressed that
learning the diagnosis of his child shattered him and
that everything he believed in had fallen apart. He said
that he cannot believe that his child has this condition
since he was their first child and there was no point of
comparison. Also, one respondent admitted that her
child was diagnosed late because she was in denial at
first. Aside from going through denial, family
caregivers also went through different struggles in
caregiving for their family members who have ASD.
The enormous difficulties that people with ASD and
their families face, as well as the impact on parental
well-being, have been illustrated by a substantial body
of research, this includes emotional stress, the ongoing
financial burden of costly medications and therapies, a
significant strain on family relationships, changes in
family roles, structure and activities, feelings of guilt
and blame for diagnosis and social stigma (Gobrial,
2018).
Commonly, family caregivers had struggles going to
therapy sessions and caregiving affected them
mentally. As regards the struggle to go to therapy
sessions, it cannot be gainsaid that therapy sessions are
important for the progress, improvement, and
development of their family members with ASD.
However, some family caregivers are having difficulty
going to therapy sessions because of the limited
availability of therapy sessions offered. Another
source of family stress has been providing direct care.
Having difficulty coordinating care, especially when it
comes to balancing the child's many health care and
educational services. It was often difficult for parents
to find these services, and they had to wait a long time
to get help (Gorlin et al., 2016). On the other hand,
family caregivers are challenged mentally mainly
because of their fear for the future of their family
members and fear for the safety of their family
members regarding the possibility of being bullied or
unaccepted, since there would be other people who
would not understand their family members’
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condition.
Some respondents also shared that they struggled to
communicate with their child as the child cannot
express himself verbally. It gives them frustration as
they do not have an idea what their child wants. This is
consistent with the study of Gorlin et al. (2016),
which found that, in addition to behavioral difficulties,
families have encountered a significant lack of verbal
and nonverbal communication with their children. One
of the respondents also expressed how hard it is to be a
single parent and not have enough knowledge of what
ASD is. On the other hand, one of the respondents,
who is a father, highlighted that even though he
assumed that his wife also went through the stages of
grief, she has her own system for dealing with it, but
as for a guy like him, learning the diagnosis of his
child was shattering.
Onset, there are perceptions that caregiving is
burdensome. Nonetheless, family caregivers were able
to formulate coping strategies to ease their situation.
Despite the challenges family caregivers were able to
cope by holding on to their faith and having a support
system. It was highlighted by one of the respondents
how important having a support system is, especially
when you have a supportive partner, have support
groups who will help you, and have communication
with the therapists as they are also able to monitor and
discuss the progress of their family members who have
ASD. This is in line with the study of Miranda et al.
(2019) where it is also found that social support has
appeared to be one of the most important coping
mechanisms, mainly for mothers, as participation in
social support plays a key role in the buffering of
stress and anxiety among parents of children with
ASD. This buffering effect is especially vital when
mothers receive social support from immediate family
and close social groups (Furrukh and Anjum, 2020),
and as they meet other parents who have gone through
the same experience of having a child diagnosed with
ASD and getting assistance from therapists and
developmental pediatricians, their understanding of
right parenting grows (Lucero, 2018).
Additionally, it was also found that faith and culture
play an important role in how family caregivers cope
as they were able to acknowledge the positive aspects
of caregiving. Furthermore, the influence of their
beliefs often led them to feel satisfied with caregiving
because they believed that experiencing suffering
would make them stronger and more resilient and that
strengthens meaning and purpose in life. In the study
of Connor (2016) faith-based coping strategies such as
prayers and redefining stressors were found to be
Ma. Rosario L. Nepomuceno
beneficial to growth and learning. While it may be
perceived as minimizing or rationalizing by some, it
may be useful in situations where people feel they
have little or no control over the situation. Moreover,
according to the study of del Castillo and Alino
(2020), faith, culture, and doctrine help Filipino
Catholics cope with life's major trials, such as
catastrophic illness or disability. Without a doubt,
parental belief systems are influenced by culture. In
the study of Gobrial (2018), ASD was viewed
positively by mothers, who saw it as a blessing or a
gift from God. Mothers demonstrated a strong
religious faith in God as well as hope for their
children.
With the family caregivers’ experiences, they were
able to gain a higher perspective in life, which allowed
them to broaden their sense of understanding and
learned to appreciate life more considering that being a
family caregiver also taught them how to be more
patient and empathetic with people. As they became
more understanding of their situation and their family
members’ condition, they were able to accept it and
realized that what other people think does not matter
and what is more important is that their family
members are doing good. Not only did they become
more understanding but also gained a sense of
fulfillment being a family caregiver, despite the
condition of their family members, they still feel
blessed and proud since their lives became more
meaningful and have this belief that they will
overcome anything as they were able to overcome the
challenges in caregiving their family members who
have ASD. This was also evident in the studies of
Hoefman et al. (2014) and Factor et al. (2019), that
despite the stress of dealing with care issues, family
caregivers can achieve fulfillment and skills from
caring for a loved one, such as creating more
optimistic perspectives on life. This was also noted in
the study by Dykshoorn and Cormier (2019), which
expresses a belief that people with ASD and their
families can do more than just survive, they can thrive.
They can live enriched and satisfying lives and be
appreciated for what they can contribute to society.
This was proven by the six family caregivers in this
study.
In summary, before family caregivers learned about
the diagnosis of their family members, their limited
understanding of ASD presented a challenge to them
as they were unable to immediately recognize the
seriousness of their family members’ condition, which
also resulted in late diagnosis for some. Nonetheless,
after seeking professional assistance, they gained a
better understanding of ASD as well as better ways to
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take care of their family members. Although at first,
accepting their family members’ condition became
difficult for the family caregivers and they had to deal
with the different challenges and stress of caregiving,
along with the process, they have learned to adjust to
their situation and overcome it by holding on to their
faith and by having a support system. Holding on to
their faith undeniably became a coping resource for the
family caregivers, which also helped them gain
confidence in overcoming difficult circumstances and
strengthened their spiritual faith. Further, family
caregivers gained a greater sense of fulfillment as their
lives became more meaningful and complete, they
were still able to thrive despite the challenges and
stress of caregiving and did more than just survive.
This comes from a deeper understanding of their role
as caregivers, and as they care for their family
members with ASD, they express this kind of affection
as manifestations of how they understand their family
members' condition.
Conclusion
It is concluded that several factors could affect the
overall experiences of family caregivers of persons
with ASD. Regardless of if a family member has high
functioning autism or severe autism, family caregivers
experienced hardships in caregiving their family
members who have ASD, went through denial but
learned to gradually accept it. They were also able to
cope and overcome these challenges by learning how
to ease their situation with their own coping strategies.
Moreover, it cannot be denied that faith and culture
could be factors as family caregivers’ beliefs influence
the way they deal with difficulties, especially that
when Filipinos have problems they tend to cling to
their beliefs. Not only were they able to cope with the
challenges of being a family caregiver, but also
learned how to be more empathetic and gain a higher
perspective in life. This can be concluded that
although family caregivers face various challenges,
they still can have a meaningful life and a greater
sense of fulfillment in caregiving for their family
members who have ASD.
The findings of the study showed the challenges and
stress of family caregivers who have a family member
with ASD, and still be able to thrive. Most of the
family caregivers shared that aside from holding on to
their faith, having a support system also helped them
get through their difficult situation. This would help
family caregivers of those newly diagnosed with ASD
in understanding the importance of having a support
system. One of the family caregivers expressed how an
Ma. Rosario L. Nepomuceno
autism family support group on Facebook helped her
overcome the challenges and stress of caregiving.
Since, one of the challenges and stress that family
caregivers experienced in this study were having
limited knowledge and having difficulty locating
health care and educational services, it is
recommended to have this kind of autism family
support group as it could help families whose family
members already exhibits signs of ASD and family
caregivers of those newly diagnosed with ASD in
identifying and understanding the different types of
support they need in assisting their family members
with ASD. Considering that there is still a great need
for collaboration between different sectors for the
interest of this special population. Based on the
findings of the study, it is also recommended that more
social media campaigns on ASD be made, as most
people already use social media platforms. This would
aid raising awareness or understanding with regards to
persons with ASD as well as with their family
members.
In addition, future researchers are encouraged to
extend the scope of this topic as the method per se.
Future researchers may utilize a mixed research design
to determine the findings' strong validity and include
more respondents from other types of family members
and more from other age groups.
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Affiliations and Corresponding Information
Ma. Rosario L. Nepomuceno
Graduate School of Arts and Sciences
Holy Angel University, Philippines
nepomucenoria@gmail.com
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