Being a Mother of a Child with Autism Spectrum Disorder Level 3:

A Phenomenological Study

Oktalia Damar Prasetyaningrum

1,2

and Ma. Belinda G. Buenafe

Institute of Nursing, Far Eastern University, Sampaloc Street, Philippines

STIKES Bethesda Yakkum, Jl. Johar Nurhadi No. 6 Yogyakarta, Indonesia

Keywords: Mother’s Experience, Autism Spectrum Disorder Level 3.

Abstract: Autism Spectrum Disorder has been studied for many times before, but there is no study about being a

mother of a child with Autism Spectrum Disorder Level 3, who has total dependence. The main purpose

was to explore the experience being a mother of a child with ASD level 3. Purposive sampling technique

was used to get ten participants in special region of Yogyakarta. Semi-structure interview was conducted.

Credibility was established by doing multiple data collection methods, variation characteristic of participant,

and confirmed evaluation and concluded using theories from previous studies and expert. The data was

analyzed and interpreted using Giorgi’s Phenomenology Method. Findings from this study identified four

essences: perceiving reality differently, performing multiple roles, selfless, and strong faith. These essences

of the participants’ experiences were synthesized. A mother of a child with ASD level 3 generally

experienced difficulties, high level of stress and hardship. The recommendation for the next study is to

conduct studies on the significant others of children with ASD level 3.

1 INTRODUCTION

Milestone development is an important part in a

child's lifetime. This is related to the ability (skill) in

the structure and function of the body to be more

complex, in a regular pattern and can be predicted as

a result of the maturation process. It is the result of

the interaction of various factors which are related,

namely genetic factors, environmental, intellectual,

and behavioral. Unique process and different result

give a distinctive feature in each child (Hidayat,

2008).

Unfortunately, some children may experience

abnormal developmental pattern. A common issue is

the delay in development that could result into a

disability. ASD prevalence rate in the last few years

have increased significantly. In 2016, every one out

of the 160 children is diagnosed with ASD (World

Health Organization, 2016).In Indonesia in 2010

there were 44,519 males and 35,118 females below

19 years old who were recorded to exhibit

developmental delays (Pusat Data dan Informasi

Kementerian Kesehatan RI, 2014). One of the most

common disabilities is Autism Spectrum Disorder or

ASD.

ASD has been studied for many times before.

However the focus was more confined to parental

satisfaction of ASD’s diagnosis, family functioning

and coping strategies of parents with children who

have ASD, comparison of stress between the mother

and father who were adjusting to their toddler’s

diagnosis of ASD, maternal stress of autism

children, exploration and category of mothers’

experiences with an autistic child, and parental

experience with children with ASD, (Brogan &

Knussen, 2003; Higgins et al., 2005; Davis & Carter,

2008; Bilgin & Kucuk, 2010; Chamal et al., 2010 as

cited by Chua, 2012). However, there is no study

about being a mother of a child with Autism

Spectrum Disorder Level 3. Hence the researcher is

interested to conduct the study in order to explore

the experiences of being a mother of a child with

autism spectrum disorder level 3.

This study was

conducted in Indonesia because this incidence is

estimated to significantly increased from year to

year as can be seen from the visiting number of

patients in general hospitals and mental hospitals on

clinical development of the child there (Subuh,

2016). Indonesia is still not well informed about the

autism spectrum disorder. It was reported that

parents, especially mothers, don’t have enough

understanding on how to handle their children with

Prasetyaningrum, O. and Buenafe, M.

Being a Mother of a Child with Autism Spectrum Disorder Level 3: A Phenomenological Study.

DOI: 10.5220/0008203000780082

In Proceedings of the 1st International Conference of Indonesian National Nurses Association (ICINNA 2018), pages 78-82

ISBN: 978-989-758-406-0

autism spectrum disorder especially the children

coming from families with low – medium economy

level. In addition, families coming from rural area,

had to bring their Autism children to the capital city

to get treatment (CNN Indonesia, 2016).

2 METHODS

2.1 Research Locale

This study was conducted in the schools for children

with autism in Special Region of Yogyakarta,

Indonesia. That place is one of provinces in

Indonesia, with 3.133,15 km

area, 3.543.708 total

population, and approximately 550 km away from

the Capital of Indonesia, Jakarta. All these schools

are located in the three different districts and have

been built in areas far from the center of the city.

Those are under supervision of Education, Youth,

and Sport Department of Special Region of

Yogyakarta.

2.2 Population and Sampling

Purposive sampling technique was used to get ten

participants. The participants was mothers of a child

with ASD Level 3 diagnosed by doctors. Thus, the

number of sample (ten participants) were considered

to reach saturation because the given data is enough

to describe the live experiences of being a mother of

a child with ASD Level 3.

2.3 Research Instruments

The instrument in this study was the researcher

itself, who did not have personal relationship or

experience taking care of a child with ASD before.

The demographic profile questionnaire, and a list of

guide questions also used as research instrument.

The following grand questions are: a) “What is it

like to have a child with ASD Level 3?”, b). “What

are these experience like?”, c) “How do you feel

about being a mother of a child with ASD Level 3?”

Semi-structure interview was conducted. The

researcher allowed the participants narrate their

experiences regarding of being a mother of a child

with ASD Level 3 then, the subsequent questions

were more focused and were guided by responses to

broader questions. In the process of collecting data,

the researcher used her cell phone as a recorder with

participant’s consent and note. Before starting the

process of data collection, the researcher has

obtained approval from the Far Eastern University

Ethic Review Committee (ERC).

2.4 Data Collection

The data collection process was conducted from

June to July 2017. On the process of collecting data,

the researcher conducted face-to-face interview with

the participants and recorded the interaction. The

interview was done in the participants’ residence. It

was done with only ones interview. In the interview

process, the researcher used three guided questions.

However, other types of questions were also used;

such as follow-up questions, confirmation questions,

or asking the participants to give examples of their

statements. It has been done to follow-up, confirm,

and clarify the previous answer. Thus, the researcher

obtained a detailed and in-depth answer.

2.5 Research Design

This study used qualitative design. Descriptive

phenomenology used in this study is based on

Edmund Husserl’s philosophy.

2.6 Data Analysis

In this phenomenological study, the researcher

applied the analysis method by Giorgi (1985) who

developed the descriptive phenomenological method

in psychology based on the thought of Husserl (as a

cited in Broome, 2011).

3 RESULT AND DISCUSSION

Based on the demographic profile sheet, the

youngest participant is 33 years old, the eldest is 50

years old, and the average age of the participants is

39 years old. While the ages of children with ASD

level 3 is between 6-11 years old. Four participants

have one child only, but the other six have more than

one. Out of ten participants, only two participants

came from Yogyakarta, while eight participants

came from other provinces. Out of ten participants,

only one mother is employed. On the level of

education, it showed that six participants were high

school graduate, three academic graduates, and only

one graduated with a bachelor degree. The

researcher did not use the real name of the

participants, instead pseudonym were used to protect

their identity.

Being a Mother of a Child with Autism Spectrum Disorder Level 3: A Phenomenological Study

Findings from this study identified four essences:

perceiving reality differently, performing multiple

roles, selfless, and strong faith

3.1 Perceiving Reality Differently

Based on the participant’s descriptions, there are two

different perceptions of participants when they first

found out that their child was diagnosed with ASD

level 3, normal feeling and emotional distress, like

shocked or fell hard. Tania said, “Firstly, I felt

normal like nothing happened because I did not

know much about autism.” The same perception also

stated by Nina, “….I felt the same. Not afraid, not

worry, not sad. Because at the time I didn’t know

anything about autism. Although the doctor briefly

explained to me about autism and what I should do,

I still believe that it just a type of disease that will be

cured.”

Meanwhile, most of the participants have

different perception. For example Chelsea. She said,

“It’s hard. It is like doing my examination. Yeah

because I have to learn something new, and then I

have to solve the problems regarding.” Or Farra,

who stated “When I have been told that my son has

autism, especially in high level, I was shocked.”

Perception is how people understand and give

meaning to something, and is affected by factors

which cause everyone to have different response

(Sharma, 2016).

There are factors that influence perception; such

as the perceiver’s attitudes, motives, interests,

experience, and expectation that cause different

perception among individuals exposed to the same

reality (Rao, 2008). In this study, it was found that

participants had different initial perceptions. They

have no prior experience of having children

diagnosed with level 3 ASD. They have the same

motivations and interests about their children.

However, they differed in attitudes and expectation

when they found out that their children were

diagnosed with ASD level 3. Three mothers thought

it could be completely cured, but other mothers

thought that having ASD level 3 children meant that

they had to do many new things which was never

thought of before.

3.2 Performing Multiple Roles

In the present study, since they became mothers of

children with ASD level 3, they have right and

responsibilities to properly raise their children.

Limitations possess by children with ASD level 3

make them play multiple roles; a care giver, an

educator, an observer and a problem solver. Mothers

help their children meet their basic needs. Mother

taught them how to do it by themselves. Mother also

taught them to socialize, sought for special school or

therapy for them, and many others. They also

experience stress in performing their multiple roles.

It is mostly conveyed by participants in this

study, such as Ann. She said, “My son cannot do

anything yet. He can’t take a bath, change clothes

without my assistance.” Then, add by Tania, “So,

everything was my duty in preparing all his needs.

He didn’t want to eat if was not me who fed him.”

But through this study, note that a mother of a

child with ASD level 3 has multiple roles. For

example, Farra. She said “Finally, when he was 1,5

years old was not able to speak. I started to worry.

He also didn’t come when I call his name. He did

not turn his head. I thought, is he deaf?”. But he is

not, because when I observed him, he loved to watch

the advertisements on TV. When he was playing and

hear his favorite advertisements on TV, he leaved his

toys and came closer to the TV.” That statement

shows that Farra perform her role as an observer.

They are also required to act as a problem solver.

Like Desy, who said “I took him to be checked in

Growth clinic.”, and Tania, “I took him to attend

Play Group in 3 and half years old.” Any other roles

were are found based on the statements of the

participants.

Roles refered to a set of rights and

responsibilities that are socially accepted and related

to a particular position in a group and are dynamic

of a status. (Hargašová, 1991, p. 97 as a cited in

Geźova, 2015). People perform various roles in their

lives, including women. In the family, woman as a

mother plays a unique, treasured, and important

roles, because she is the keystone of the family

especially for her child/ children (Štrbová, 2004, p.

18 as a cited in Geźova, 2015). If the mother of a

child with a normal growth and development pattern

will experience a change in the mother role at a clear

time as their child ages, but not in the mother of a

child with autism.

This result is in line with Diranian (2011) who

mentioned that mother is a protector and a

disciplinarian, she is selfless and is willing to make

sacrifices, just to make sure that their children are

equipped with the knowledge, skills and abilities to

become a competent human being. More specifically

as explained by Bihn (2012) that the first role of the

mother’s is to bring love to the child, and the second

role is to be the child’s first teacher. In her study

about The Role of Family in Educating-Socializing

Children, she explained that mothers perform their

ICINNA 2018 - The 1st International Conference of Indonesian National Nurses Association

roles with holding, lulling, looking after, and

worrying about children. Mothers are interested in

every child’s behavior; when they are full, hungry,

hot, cold, comfortable, uncomfortable, or when they

are laughing. Mothers teach children good manner

towards family members, neighbors, and everyone.

3.3 Selfless

In this study, based on the participants’ expression,

it is known that a mother of child with ASD level 3

makes many sacrifices for their child. Like Rafika,

she expressed, “Sometimes I need to have me-time,

cream bath, massage, etc. But, yeah what I can do if

the schedule is really tight, school, therapy, house

hold cares. So, I do that.” What she wanted to tell us

is that she puts her self-centered behind, instead

prioritise her son needs.

Marie showed another example of an action that

has the same meaning and reason like Rafika. She

told us “I usually apologize to my neighbor because

of my daughter’s behavior. She screams loudly at

midnight”. And also added by Desy with her

statement, “Then, finally we moved here, in

Yogyakarta. I chose the house, it’s rather expensive

but I hope that the neighbors are busy that they do

not get disturbed by my son when he is screaming.”

Marie and Desy put aside their embarrassment

and financial matter to overcome their neigbours’s

inconvenience due to her child’s behavior. Beside,

we also found that most of the participants were

willing to move from their city to Yogyakarta to get

the proper therapy or special school for their

children. These actions are manifestations of the

selflessness that has been done by mothers of child

ith ASD level 3.

Selflessness is reffered to an attitude where the

self is not on a central point (Neff, 2003 as a cited in

Dambrun & Ricard, 2011). In this study, based on

the participants’ expression, it is known that a

mother of child with ASD level 3 makes many

sacrifices for their child. Mothers put aside their

embarrassment and financial matter to overcome

their neigbours’s inconvenience due to her child’s

behavior. Beside, we also found that most of the

participants were willing to move from their city to

Yogyakarta to get the proper therapy or special

school for their children. These actions are

manifestations of the selflessness that have been

done by mothers of children with ASD level 3.

Selfless is characterized by low levels of self-

centeredness, a low degree of importance given to

the self and is closely related to characteristics such

as altruism, kindness, respect, empathy, compassion

(Danbrum, 2011). A selfless functioning is based on

a weak distinction between self and others, and self

and the environment as a whole (Leary, Tipsord, &

Tate, 2008).

Previous study about mothering and self

sacrifices in Aristotle’s Nicomachean Ethics defined

that mothers love their children more than fathers,

mother-child relationships are a more giving rather

than receiving affection (Ward, 2008).

3.4 Strong Faith

The mother of child with ASD level 3 believed that

God will help them to taking care their special child.

They believed there will be good things. Chelsea

said, “But, besides that, I believe God will always

help me. And in the end -I don’t know when-, He will

proud of me and give me the best gift ever.” Then

added by Rafika, “I believe that is a test from God.

When I passed, He will give me eternal present.”

Faith is defined as a complete trust or confidence

in someone or something, but also refers to the

strong belief in God or in the doctrines of a religion,

based on spiritual apprehension rather than proof

(Merriam-webster, 2017). Althought the participants

have different religion, they have strong belief in

God regarding their experience of being a mother of

a child with ASD level 3.

Faith makes them strong, keeps them going as

mothers of child with ASD level 3, as implicit on

Desy’s expression “We believe that after this

sadness there will be happiness. There will be a

happy ending for us. We depend on Allah.”

The mother of child with ASD level 3 believed

that God will help them take care of their special

child. They believed there will be good things. Faith

is a complete trust or confidence in someone or

something, but also refers to the strong belief in God

or in the doctrines of a religion, based on spiritual

apprehension rather than proof (Merriam-Webster,

2017). Although participants have different

religions, they have strong belief in God regarding

their experience of being a mother of a child with

ASD level 3.

A literature says that parents of children with

autism face stressors associated with several aspects

of child's sympthoms, including sleep difficulties,

behavioral problems, poor social skills, and financial

challenges; each stressor may be related to

psychological deterioration of the parents (Serrata,

2012 as a cited in Davis, 2016).

That was the background of the attitude of the

mother who then resigned to God and sought God's

help. Mothers continue their journey toward the

Being a Mother of a Child with Autism Spectrum Disorder Level 3: A Phenomenological Study

level of spirituality, that means they have considered

the parenting process as the responsibility given to

them in their lives and no one can replace them from

given. Although most of them know that their

children's abnormalities can not be cured, they do

not stop their efforts and consider to move forward

to help their children, they believe they have to do

something to help children reach the top of their

goals in every possible way (Haeydari, Shahidi, and

Mohammadpour, 2015).

4 CONCLUSIONS

Based on the participants’ responses, data revealed

that a mother of a child with ASD level 3 generally

experienced difficulties, high level of stress, and

hardships. Even so, they are able to adjust and find a

suitable way to cope with taking care of the child

with ASD level 3. As a nurse we are expected to

facilitate mothers’ inquiry or mothers’ concerns

about the future of children with ASD. The

knowledge of the growth and development stages of

children should be explained to them.

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ICINNA 2018 - The 1st International Conference of Indonesian National Nurses Association