Accepted Manuscript

Living a Tormented Life: Caregivers' Experiences of Caring for a

Child With Autism in Northeastern Thailand

Vatinee Sukmak, Nisachol Sangsuk

PII: S0883-9417(17)30593-9
DOI: doi:10.1016/j.apnu.2018.04.005
Reference: YAPNU 51096
To appear in: Archives of Psychiatric Nursing
Received date: 8 December 2017
Revised date: 8 April 2018
Accepted date: 18 April 2018

Please cite this article as: Vatinee Sukmak, Nisachol Sangsuk , Living a Tormented Life:
Caregivers' Experiences of Caring for a Child With Autism in Northeastern Thailand. The
address for the corresponding author was captured as affiliation for all authors. Please
check if appropriate. Yapnu(2017), doi:10.1016/j.apnu.2018.04.005

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Living a Tormented Life: Caregivers’ Experiences of Caring for a Child with

Autism in Northeastern Thailand

Vatinee Sukmaka*, Nisachol Sangsukb

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Department of Mental Health and Psychiatric Nursing, Faculty of Nursing, Mahasarakham

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University, Thailand

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b
Department of Paediatric Nursing, Faculty of Nursing, Mahasarakham University, Thailand

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Corresponding Author: Vatinee Sukmak Department of Mental Health and Psychiatric

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Nursing, Faculty of Nursing, Mahasarakham University, Khamriang Sub-district Kantaravichai

District, Mahasarakham Province, Thailand 44150

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Email:vsukmak@gmail.com
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Living a Tormented Life: Caregivers’ Experiences of Caring for a Child with Autism in

Northeastern Thailand

ABSTRACT

Caring for children with autism spectrum disorder (ASD) can be a demanding challenge to

caregivers. The aim of this study was to learn what caring for children with ASD means to

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caregivers who live in rural Thailand. A hermeneutic phenomenological approach was used to

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analyze narrative data from interviews of five caregivers. Three themes emerged: (a) being

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sensitive to the word autism, (b) being trapped in a tunnel of distress, and (c) being the universe

for the child. Healthcare professionals need to be sensitive to the caregivers’ cultural customs in

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order to meet their expectations in a respectful way.
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Keywords: autism; caregivers; phenomenological hermeneutic; Thailand
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Caring for children with autism spectrum disorder (ASD) is challenging and profoundly

affects caregivers’ lives (Iadarola, Perez-Ramos, Smith, & Dozier, 2017; Tilahun et al., 2016).

The literature is replete with reports of the stressful impacts that children with ASD have on

parents (Hall, Fruh, Zlomke, & Swingle, 2017; Keenan, Newman, Gray, & Rinehart, 2016;

Tilahun et al., 2016; Walter & Smith, 2016). Recent studies have shown that these parents have

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higher levels of negative emotional experiences than those of typical children (Al-Farsi, Al-Farsi,

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Al-Sharbati, & Al-Adawi, 2016; Lee & Chiang, 2017; Li, Pinto-Martin, Thompson, Chittams, &

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Kral, 2018; Padden & James, 2017). One possible explanation of the emotional stress in parents

is the public stigma associated with ASD (Kinnear, Link, Ballan, & Fischbach, 2016; Tilahun et

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al., 2016). Parents believe that stigma is evident when people use tactless and hurtful words to
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openly describe their children; words such as ‘weird’, ‘stupid’, ‘strange’, ‘freak’, ‘brat’, ‘crazy’

‘odd’, ‘aggressive’, and ‘autistic person’ (Harandi & Fischbach, 2016; Kenny et al., 2015). The
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external factors such as public’s ignorance and lack of social acceptance of children with ASD
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may form the root causes of this stigma (Harandi & Fischbach, 2016).

Parents of children with ASD have also reported problems with daily care activities, experienced
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financial problems, suffered from depressive moods (Hoefman et al., 2014), and may have stopped
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employment to care for their children (Harandi & Fischbach, 2016). Some even perceive themselves as

being stigmatized, not their children (Kinnear et al., 2016). Nevertheless, they worry about their child’s
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future (Desai, Divan, & Patel, 2012; Tilahun et al., 2016), and indicate that planning for their children’s

future well-being is a paramount concern (Hall et al., 2017).

Most evidence examining caregivers of children with ASD has come from Western and some

Asian countries but few researchers have studied the issue in Thailand. Studies that have been published

have used quantitative methods and centered on the urban experiences of Thai family members,

particularly mothers. For example, Lerthattasilp, Charernboon, Chunsuwan, and Siriumpunkul (2015)
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found that most caregivers living in Bangkok had depression and caregiver burden related to the number

of children’s problems and the number of hours that they spent with their children. The burden was

significantly associated with the children’s communication problems and their inappropriately repetitive

behaviors. Another study, also conducted in Bangkok (with a population of 9.5 million people) reported

that most parents of children with ASD experienced high levels of stress, similarly associated with their

children’s behavioral problems (Phetrasuwan & Miles, 2009). Although the literature strongly supports

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the view that stress and caregiver burden are linked to caring for children with ASD, less is known about

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what it means to care for these children in rural communities. Therefore, the aim of this study was to learn

what caring for children with ASD means to caregivers who live in a rural region of Thailand.

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Northeastern Thailand

Despite Thailand’s newly industrialized economy, the World Bank reports that 48.5% of
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the population lives in rural areas (Trading Economics, 2018), though this figure may be

inaccurate because of seasonal demographic shifts that are difficult to account for. Isaan is a
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geographically large, ethno-cultural region in northeastern Thailand containing 20 of Thailand’s

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76 provinces and with one-third of the Kingdom’s 69 million population (Department of

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Provincial Administration, 2018). Isaan (variant spellings of Esan, Isan) is predominantly rural

with a few smaller urban areas. Poverty is concentrated in the northeast of Thailand (Moore &
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Donaldson, 2016). In addition, the majority of children with disabilities are from families
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considered below the federal poverty level (Carter, 2006). In order to find better employment,

many rural workers emigrate from the northeast to more prosperous urban provinces or even to

other countries (Raley, Bianchi, & Wang, 2012). With increasing educational opportunities and

modern technology, young professionals in rural communities are leaving traditional ways of life

to find employment and an urban lifestyle elsewhere (Gray, 2017).

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Several urban industries require women workers; thus, some mothers leave their children

with their relatives in the rural villages (Perawongmetha, 2012). Parents return infrequently but

may send money home for caregivers and children or, unfortunately, may not send anything at

all due to living expenses in the large cities (Graham & Yeoh, 2013). In the absence of their

parents, nearly 90% of the children are living with their grandparents, most of whom have only a

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primary school level or no formal education (Keenapan, 2014; Perawongmetha, 2012). This

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imposes a financial burden on the grandparents because Government aid for the elderly is limited

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to 800 Thai baht per month [about $23 USD] (Knodel, Teerawichitchainan, Prachuabmoh, &

Pothisiri, 2015).

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In Thailand, there is no Thai word for autism. ‘Autistic’ in Thailand is used as both a
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noun and an adjective. The transliterated example ‘dek autistic’ is interpreted as a child with

ASD (Vibulpatanavong, 2017). Sometimes, Thai people refer to children with ASD as ‘dek uur
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or dek au.’ However, ‘dek uur’ is misused in Thailand since it signifies Down syndrome,
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congenital hypothyroidism or cretinism (Iammelon, 2017). It can also be used invectively to call

someone stupid, thick, or mentally retarded (MedThai, 2017). Although Thai children with ASD
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are now considered to be members of society, they are stigmatized as mentally limited or insane
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(Forlin, 2012). In the past, they were also considered useless or worthless, with no future

(Wipattanaporn, 2014). These children were often kept at home and restricted from entering
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education services because the parents wanted to keep them from being teased and called names

(Sukbunpant, Shirashi, & Kuroda, 2004). Currently, some families who accept their children’s

disabilities do not keep them at home but usually provide them with opportunities to attend

school (Wehmeyer & Patton, 2017). This is based on a belief that a Thai education will lead to

the acquisition of an administrative post in the Thai government bureaucracy (Tong, 2010).
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Background of special education in Thailand

In 2012, the number of children diagnosed with autism in Thailand was listed as 180,000

(Kopetz & Endowed, 2012), though the actual prevalence rate has not been determined due to

the lack of statistical studies to establish the prevalence rate (Vibulpatanavong, 2017). Prior to

the introduction of the National Education Act, people with disabilities had not been permitted to

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enroll in classes (Kachondham, 2010). The first special education program was created in 1951

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at Sommanus Temple School to serve children with hearing impairment (Vorapanya & Dunlap,

2014). Since then, special education developed gradually. In 1964, schools for students with

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intellectual disabilities were set up followed by the foundation of schools for students with

physical disabilities (Hill & Sukbunpant, 2013). Consequent of the National Education Act of
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1999, 76 provincial special education centers were created (Hill & Sukbunpant, 2013;
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Wipattanaporn, 2014). Parents have the choice to send children with disabilities to study at a

mainstream school, a specialized school, a center for children with disabilities, or to keep them at
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home (Kosuwan, Viriyangkura, & Swerdlik, 2014). Children with disabilities who attend a
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school or center can receive education coupons valued at 2,000 Thai baht [$55 USD] per year for

technology and assist with special needs such as occupational therapy and speech therapy (Hill &
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Sukbunpant, 2013).
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The main goal of the special schools is to enhance self-help skills in school-age children

with disabilities (Kachondham, 2010). Lessons can vary for each individual, and may include,

for example, grooming, doing household chores, bathing and dressing (Hill & Sukbunpant, 2013;

Kachondham, 2010; Kosuwan et al., 2014). However, there is no special curriculum for teaching

children with ASD (Hill & Sukbunpant, 2013). The purpose of special centers is to find children

with disabilities and provides early intervention (Kosuwan et al., 2014), moving them to local
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communities, and teaching parents how to improve their children’s development (BSE, 2012;

Hill & Sukbunpant, 2013). However, schools and centers in rural parts are often lacking the

equipment that those in the urban areas have, most likely due to a shortage in budget

(Sukbunpant et al., 2004). The special schools are typically boarding schools, whereas special

centers are day schools (Wipattanaporn, 2014). Due to the reluctance of the parents to send their

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children away and the unaffordable fees, most children still miss the opportunity to access

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educational services from the special schools.

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Most parents desire that their children with disabilities be included in a regular school

(Wehmeyer & Patton, 2017). However, a final decision on where the child will be placed in a

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mainstream school is made by school administrations and is contingent on the personal
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relationship between special teachers and general education teachers (Kosuwan et al., 2014).

Another major obstacle in accessing the educational services is transportation because the
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services are located in the city making it difficult to get there (Kachondham, 2010) The aim of
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this phenomenological study was not only to obtain a rich and deep account of what it means to

give care to children with ASD but also to contribute useful information for developing a
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caregiver support program at special education centers in rural Thailand.

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METHODS

Design
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This study employed a hermeneutic phenomenological approach (van Manen, 1990). It is

a qualitative research method used to interpret the meaning of a lived experience by people

involved with the phenomenon of interest, rather than merely describing the phenomenon.

Hermeneutic phenomenology examines the contextual relationships embedded in the

individuals’ lived experiences (Creswell, 2013).

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Ethical considerations

The study was approved by a University Ethics Committee (#084/2560). Participants

were informed that their participation in the research was voluntary and they were free to

withdraw from the study at any time. Participants were told that their children’s study would not

be affected in any way by the research. In order to protect confidentiality, personal identities

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were coded during data analysis so that the participants’ names did not appear. Finally, all

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participants were asked to provide informed written consent.

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Setting

The study was conducted at a provincial special education center in the Isaan region of

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Thailand with the permission from the center’s director. A total of 24 children with ASD were
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registered at the center.

Participants
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Potential participants were primary caregivers of children with ASD who had the ability
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to give informed consent. Seven potential caregivers were invited by the center’s officer for

permission to be contacted by the research team. Out of the seven, five primary caregivers
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consented to participate in the study

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Demographics of participants

The five participants were female and had less than a high school level of education. Four
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were unemployed and one was a farmer. Three participants were grandmothers between the ages

of 62 and 65 years. Two of the grandmothers were married and lived with their husbands and

grandchildren with ASD. The other was widowed and lived with her grandson with ASD. The

parents of the three children living were their grandparents were divorced and worked in another
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province. Since birth, the three grandchildren had been raised by their grandmothers. The

interview took place when the children were between four and seven years old.

The fourth participant was a 32-year-old mother living alone with her two sons. The older

son had ASD. After his birth, the parents decided to move to another province for work, leaving

the grandmother to be the caregiver. When the older son was four years old, the mother resigned

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her work and returned home. The father continued to work at the distance province. During the

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time of the interview, the child with ASD was eight years old.

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The fifth participant was a 55-year-old sister-in-law of the child’s father, was married and

lived with her husband and her own two sons, 15 and 24 years old. Their house was next to the

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house where the child with ASD lived alone. The participant nurtured that child since birth
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because the parents worked far from home. At the time of the interview, the child was six years

old.
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Demographics of the children with ASD

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All five children were boys between the ages of four and eight years (mean 6.4 years).

Each child was the sole child with ASD in their respective households. Out of the five children,
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three were an only child, one was the first-born child, and one was the second-born child. All five
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children had been seen by a physician since they were two or three years old. All had normal

hearing. One child talked to himself, and the others showed signs of delay in speech and
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language acquisition, making only aah and ooh sounds. One child had been diagnosed and

treated for tongue-tie but still uttered only aah and ooh sounds.

All of the children had delayed gross motor development from early age. Two of them

had begun belly crawling, and the other two walked only on their toes. One child jumped but

never walked. All the children showed pronounced delays in social development. One child
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usually stayed in front of a television for long periods. The rest had poor eye contact, displayed

an absent gaze, and played alone. Another displayed fear towards strangers. Two children had

emotional impairment and another expressed himself with unusual laughing and crying.

After the diagnosis of ASD at the age of three, four children had behavioral problems and

received medication. The problems ranged from hitting others, hitting their heads, climbing over

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a fence, running, screaming, and destroying property. They were referred to a provincial hospital

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for their aggressive and self-destructive behaviors. One of the four children did not talk and

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received speech therapy. The fifth child had no behavioral problems.

From the age of three or four years, the children had begun their studies at the provincial

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special education centers to help improve their development. None of the children could dress
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themselves, three could not flush the toilet and one had a problem in feeding himself. The

children would go to the center about two or three times a week. On other days, they would
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remain at home under the caregivers’ guardianship. When caregivers were unavailable, three
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children were looked after by their grandfathers, and one by his neighbor. The mother who had

returned home to be the caregiver was rarely unavailable.

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Data collection
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Data were collected with an audiotape recorder at the special education center using

semi-structured, in-depth, face-to-face interviews. An interview schedule was developed in the

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Isaan dialect. The primary interviewer was a psychiatric-mental health nursing instructor with

extensive experience working with patients. A second nurse researcher worked with children

with ASD and was the note taker during the interviews. Both were experienced in conducting

qualitative research. Interview sessions took place in October 2017 and each lasted from 45

minutes to 1 hour. All interviews were recorded and were transcribed in Thai by the researchers.
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All quotes giving the explanation of each theme were translated into English in the last phase of

data analysis.

Data analysis

The transcribed interviews were analyzed using the hermeneutic phenomenological

method of van Manen (Creswell, 2013). This is a form of analysis in which experiences are

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interpreted by the researchers to identify thematic statements. Step 1 involved reading all

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transcriptions to achieve a sense of the whole narrative. Step 2 involved studying the text

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sentence-by-sentence to understand caregivers’ experiences as lived. In step 3, the researchers

reviewed the significant statements that relate to the phenomenon under study in an attempt to

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find meaning and began to extract the underlying themes. The fourth step involved the
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development of interpretation and patterns of the themes. In the fifth step, the essential themes

which characterize the phenomenon were formulated and analyzed. Saturation occurred when
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there was progressing replication of data concerning the emerging essential thematic components
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of the phenomenon under study. To ensure trustworthiness, both researchers carefully read the

analysis of transcripts line-by-line, paid attention to every case that either supported or
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contradicted the theme and discussed the analysis of the findings (Lincoln & Guba, 1985). To
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check the researchers’ understanding and interpretation of the elements in the interview, we

checked with the participants during each interview using questions such as: What do you mean?
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Could you explain?

FINDINGS

The essence to all the caregivers’ experiences may be expressed as ‘living a tormented

life.’ Caregivers basically felt that they were experiencing intolerable anger, sorrow, distress and

uncertainty with respect to dealing with the challenges of caring for a child in their daily lives.
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Data analysis revealed three themes related to their experiences supporting the essence: (a) being

sensitive to the word autism, (b) being trapped in a tunnel of distress, and (c) being the universe

for the child.

Theme 1: Being sensitive to the word autism

Being sensitive refers to one making sound judgments, choices, and decisions based on

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how much awareness or acquaintance one has with things and people (Deede, 2014). The

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caregivers did not want to hear the words ‘dek-au, dek uur, or autistic’ directed at their children.

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They believed those words were an insult, alluding to their child being mental retarded. They felt

angry, hurt, sorrowful, and could not accept those words.

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“When someone used this word (dek uur) with him, I felt hurt and got very angry.” (P1)
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“When the doctor told me that he is autistic, I still could not accept it and sometimes I felt

very upset with this word… I did not want him being teased about his behavior because it
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could make him feel uncomfortable and embarrassed.” (P2)

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“Just hearing the word “Delayed learning” is already distressing, so hearing ‘dek-au’ is

very heart breaking.” (P3)

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“When thinking of the word ‘dek uur’, I felt tight in the chest [wiping away tears]…When
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taking public transportation, people would criticize my child as abnormal. The feelings I

felt were so sad that I could not even talk back. I want others to have empathy towards my
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family.” (P4)

“When they said that the child seems to be autistic, I felt very sad...His parent also denied

the fact that he is autistic and does not want to hear any of it.” (P5)

Theme 2: Being trapped in a tunnel of distress

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Distress is defined as an emotional reaction characterized by symptoms of depression

(e.g., lost interest; sadness; hopelessness) and anxiety (e.g., restlessness; feeling tense)

(Mirowsky & Ross, 2002). In this study, the caregivers found themselves in an everlasting

sadness. The caregivers faced many obstacles, such as finding education services and a future for

their children. Since it was hard and stressful, the caregivers felt exhausted. They did not want to

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give up the caregiver role and responsibility, but they could no longer sustain the intensity and

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pace. This theme encompasses four sub-themes: (a) an emotionally draining experience (b) a

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great hardship, (c) choosing a school that is right for the child is painstaking process, and (d) an

unpredictable future for the child is unbearable.

Subtheme 2.1: An emotionally draining experience

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An emotionally draining experience is a chronic state of physical and emotional depletion

that results from excessive work and/or personal demands and continuous stress (Bakker &
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Costa, 2014). The caregivers always felt drained as the children needed attention for their safety
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at all times. Even talking about children made the caregivers feel unnerved.

“When speaking of my child, I feel upset by this ordeal. It makes my tears run down (my
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face) whenever I think about it…. When I talk about him, I want to cry.” (P1)
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“Just talking about him makes me want to cry, [cries]…It is also a burden when he is not

listening to me. This makes me feel disheartened when taking care of him [cries intensely]
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…I feel disappointed about the situation but I will still support him to become a better

person.” (P2)

“I feel like crying all the time but cannot do so. I also cannot talk about it…Whenever I

think about it, I feel sad.” (P3)

“Sometimes I will cry with him [laughs] or by myself.” (P4)

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Subtheme 2.2: A great hardship

Hardship is a situation where it is difficult to endure or that is unpleasant (Hacker, 2011).

In this study, the caregivers endured great hardship in caring for their children as they have to

apply meticulous attention to detail about everything, every day. Communication between

caregivers and children is also difficult. The caregivers described the following:

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“He cannot even put on his own clothes. When playing with others they hog the toys for

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themselves, making me become concerned about their actions.” (P1)

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“During eating he smells his food…He does not talk but rather points to the things that he

wants…Sometimes he has to get what he wants and does not listen to our voices…On some

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days, the teacher calls and asks me to come and control the child…On other days he opens
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the gate and walks out and this is a very huge concern that he might be involved in a traffic

accident [cries intensely].” (P2)

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“He cannot eat food without someone taking care of him…He also cannot be left alone
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when playing. He needs to be monitored constantly…At age of 8, he can talk more, and has

difficulty running. He does not look at the road properly…When many chores arise, there
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must be at least one person to look after him, so I have little privacy…He keeps hitting
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himself and needs to be taken care of all the time.” (P3)

“Sometimes I know that he needs to go to the toilet, but I cannot get him to the toilet in
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time…I constantly teach him potty training, but he never remembers any of it.” (P5)

Subtheme 2.3: Choosing the right school for the child is a painstaking process

The caregivers were constantly concerned about the child’s knowledge and development.

While there were several types of special education services, it was a complicated and difficult

process for them to find a school that suited their needs. Each education service has unique
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objectives with different outcomes for the children. Caregivers must choose carefully for their

children’s future. Consequently, the arduous decision-making process took its toll on the

caregivers.

“I hope that my child will become well educated so that he can have a career in the

future…In the future, when I grow older, I will be even more worried about this. So, I tried

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to find the school that works best for him.” (P1)

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“I wish that my child can study and be able to write. I also hope that he gains knowledge

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of the outside world [wipe the tears]...I feel very sad about all of this, but I will still find a

school where he can study.” (P2)

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“I am currently looking for a school for him, but I cannot decide on which one to choose.
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This is because he cannot study in a normal school.” (P3)

“Even if he cannot work in the federal system, I hope that he will at least do the things that
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he wants, like playing the lute or kaen [bamboo mouth organ]…I hope that he can read
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and write normally like others.” (P4)

Subtheme 2.4: An unpredictable future for the child is unbearable

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On considering their children’s poor development, the caregivers expressed uncertainty

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about their children’s future. The caregivers were often pessimistic. When asked about the

future, they hoped their children could live independently. However, most caregivers stated that
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their children would be unable to live without the assistance of a caregiver. The caregivers

stated:

“I’m scared that if he cannot support himself now, then how can he survive in the

future...and at the age of 14 to 15, will he be able to do anything? [cries]…I worry that no

one will help him.” (P2)

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“He can never live on his own…He needs someone to help him survive.” (P3)

“I worry that without assistance he cannot survive in the future.” (P4)

Theme 3: Being the universe for the child

Caregivers believed they were a necessity for their children’s survival. The parents had

abandoned four of the children, leaving the caregivers to assume the responsibility. Without a

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caregiver, they felt their children would lose a guardian, someone who understood them best.

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Even if some of the caregivers suffered from a chronic disease, they assumed responsibility for

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looking after their children because they believed that no one loved their children more than they

did. Therefore, they believed they were the last person to help the children survive.

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“I’m afraid that no one would take care of him because his parents are always busy… If
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he grows up and I’m not around what can he do on his own?” (P2)

“If I’m not there for him, then how will he be able to live.” (P3)
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“I’m scared that the others will not take as much care of him as I would...I do not believe
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that they would love him as much because he is autistic.” (P4)

“Will the father be able to take care of his own son after my death. I’m afraid that after I
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die, he will neglect his own child [wiping the tears] … His parents will never take care of
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their child.” (P5)

DISCUSSION
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The aim of this study was to learn what caring for children with ASD means to caregivers

who live in a rural region of Thailand. The findings show that children with ASD have an

immense impact on the caregivers’ lives. Parents of children with ASD in our study had a high

(60%) divorce rate. This finding is similar to the increased rate of divorce (24%) found in parents

of children with ASD in the United States (Hartley et al., 2010). The caregivers in this study also
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described their circumstances in a way not been previously reported. In essence, the experiences

can be described as ‘living a tormented life.’ From the caregivers’ perspectives in rural Thailand,

the tormented life results from both internal sources (stress and anxiety from providing

emotional and physical care and the worry and concern about the child’s future) and external

sources (a lack of public understanding and knowledge and limited financial support). Other

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studies have reported that parents of children with ASD also felt isolated because society lacked

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empathy and understanding, and the parents feared being laughed at (Harandi & Fischbach,

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2016).

Caregivers do not want anyone to refer to their children as autistic. This is reflected in the

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first theme which deals with the sensitivity of parents to the word autism. Caregivers think if
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others label a child autistic, a word associated with mental retardation, the stigma will attach to

the child. This finding is consistent with Forlin (2012) who reported that Thai caregivers
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interpret autism as meaning mentally limited or insane. The children in our study were young (4–
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8 years old) at the time of the interview, and the caregivers felt the word autistic may have been

an embarrassment to their children. Because the caregivers had a low educational background,
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they may have been unable to differentiate between autism and mental retardation. Parents
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elsewhere have similarly reported that they dislike hurtful words and statements in reference to

their children (Harandi & Fischbance, 2016). Using the terms autistic person can be wounding
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and undesirable (Kenny et al., 2015). The findings of our study, however, are inconsistent with

what Kinnear et al. (2016) reported in that the Thai caregivers did not perceive themselves to be

stigmatized by their child's disorder.

In the second theme, being trapped in a tunnel of distress, all caregivers expressed a

variety of distress. As might be expected, the four older grandmothers in their 60s are stressed in
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having to constantly attend to young children with pronounced developmental and behavioral

problems, such as hitting their heads, hitting others, climbing safety barriers, and delayed

learning of basic personal and interpersonal skills. The caregivers live a restricted life with

limited social support in caring for the children. The parents of the children are divorced or

absent due to their working in another province. Since children in our study lacked ability to

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communicate their needs, caregivers may experience stress due to the inability to understand or

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meet the needs of their child. Previous studies have found that mothers of children with learning

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disabilities are surrounded by stressful circumstances and devote a great deal of time to routine

care and training their child in day-to-day life skills (Hall et al., 2017; Walter & Smith, 2016).

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Similarly, the quantitative results of caregivers of children with ASD living in Bangkok showed
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that caregivers experienced depression, stress, and felt burdened by their children’s behavioral

problems (Lerthattasilp et al., 2015; Phetrasuwan & Miles, 2009).

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Finding an institution to match the needs of caregivers and children with ASD is a
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troubling matter. Caregivers try to place their children in a special education center or

mainstream schools. They worry that their child may be unable to appropriately socialize in a
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mainstream school and that the school may not attend to their children’s needs. Furthermore,
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admission to special education schools is expensive (Wipattanaporn, 2014). In the less affluent

and rural Isaan region, both the distance to a special education school and its tuition costs are
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major concerns. Since the purposes of the special education centers are to provide children with

disabilities with early interventions and train their parents in promoting child development

(Kosuwan et al., 2014), most caregivers preferred their children to study at the centers. However,

the special education centers in rural areas are difficult to access because of their distance from

the caregivers’ homes (Kachondham, 2010). Despite these obstacles, the caregivers know they
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must find a school to help their children become independent in the future. Thai people know

that education can change lives (Tong, 2010) and be a pathway to secure a child’s future, leading

to stable employment. For this reason, caregivers in our study are pessimistic about their

children’s future. They fear their children will be unable to live independently and will not be

employed in the work force. These concerns are consistent with those of parents in others studies

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who were worried about their children’s future (Desai et al., 2012; Hall et al., 2017; Tilahun et

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al., 2016).

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For the third theme, being the universe for the child, the caregivers’ experiences relate to

the challenges of their responsibilities and roles. The caregivers thought they were one of the

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most important persons in the children’s lives. Four of the five caregivers in our study were
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grandmothers. They had few family and financial resources to ask for assistance and support

their children. No one else was available to become a caregiver because the children’s parents
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were either divorced or needed to work elsewhere. In extended Thai families with supportive
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role obligations and responsibilities, caregivers will strive to do whatever they can to ensure their

children’s survival.
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This study has allowed the authors to gain insight into the experiences of primary
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caregivers of children with ASD in the Isaan region of Thailand. The major strength of this study

is analyzing the contextual factors in parallel with the thoughts from the caregivers. For example,
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in Isaan, workers leave their children in the care of extended family members. Three of the five

the caregivers were grandmothers and the fourth was sister-in-law of the child’s father who

highly involved with their grandchild. However, the limitations of this study include that the

sample of caregivers of children with ASD was small and unlikely to be representative of a
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larger sample. The sample was also limited to caregivers whose child attended the provincial

special education center.

IMPLICATIONS FOR PRACTICE AND FUTURE RESEARCH

This study revealed the experiences of caregivers who live with the children with ASD in

the Isaan region of Thailand. The findings interpreted the life of caregivers who cared for the

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children with ASD. This new knowledge has implications for healthcare policy makers and

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future research teams. Healthcare policy makers should support the establishment of programs

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such as a Caregiver Support Program at special education centers in rural Thailand. A public

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education campaign in autism should be created in order to have society understand children

with ASD better. Recommendations for the rural Isaan region include improved education
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facilities and greater financial support to provide quality care to children with ASD and their
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caregivers. Creating a daycare facility for children with ASD near their home could provide

amelioration of the caregiver’s burden by removing the children from the home for one day.
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Conducting research to examine programs to assist caregivers will be important. Further research
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about coping strategy is needed to extend our understanding of the unique issues caregivers of

children with ASD encounter, so overall care to these caregivers can be improved in the future.
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