Characteristics of Patience in Parents with Autistic Children: A Phenomenological Study

Characteristics of patience


INTRODUCTION
Autistic cases tend to increase globally.The Centers for Disease Control and Prevention (CDC, 2018) reported that the prevalence of autism has increased from 1:50 in the population in 2000 to 1:59 in 2014 (Sabandar, 2019).Maria Endang Sumiwi, the Director General of Public Health for Indonesia, explained that the number of people suffering from autism spectrum disorders in Indonesia is estimated to have increased by 500 annually.During 2020-2021, there were 5,530 cases of developmental disorders in children, including autism spectrum disorders, which received services at public health centers (Indonesian Ministry of Health, 2022).The health office and the education office manage the handling of autistic children in Indonesia.Based on the basic education data, there were 3,525 special school children in Riau in 2022, while there were 1149 children in Pekanbaru (Indonesian Ministry of Education, Culture, Research, and Technology, 2022).
One of the problems of special education for children with autism in Indonesia is the tendency of intervention services provided by non-governmental organizations to apply relatively expensive therapy costs so that only families who are classified as wealthy can access them, while families who are economically disadvantaged have difficulty accessing them.To address this issue, the Indonesian government established the Autism Service Center (ASC), a service facility for autistic kids that low-income families can use (Mudjito, Hariza, and Supena, 2014).The Autism Service Center in Indonesia is managed by the central government through the education office in each region.One of the Autism Service Centers that has been operating since 2015 and has become the object of research is the Riau Province Autism Service Center.
Parents have a role in making therapy effective for their children (Silverman & Brosco, 2007).Parents with autistic children usually look different from their parents in general (Hizbullah & Mulyati, 2022).They often deal with so many problems, not only from autistic children but also other problems, such as economic problems (Rahmanawati et al., 2022).Another problem is the bullying behavior of society toward its children, who are different and far from perfect.Tantrums in autistic children can occur suddenly, and the cause is difficult to predict, but parents with autistic children must be patient in accepting them.After undergoing therapy at the Autism Service Center, some autistic children will experience encouraging progress, but some will experience slow progress.It applies to autistic children with moderate to severe degrees.Parents in the Autism Service Center must have the characteristics of patience that can help them navigate difficult lives (Fadilah & Madjid, 2020).Moderate to severe degrees of autism are usually caused by disturbances in neurobiological development that affect how children learn and communicate, so therapy for these autistic children seems slow.
In 1943, Leo Kanner of Johns Hopkins University described autism for the first time.His findings were based on the observations of 11 children from 1938 to 1943.According to the Treatment and Educational of Autistic and Communication Handicapped Children Program (TEACCH), autism is understood as a disorder of severe neurobiological development, so the disorder affects how children learn, communicate, their presence in the environment, and their relationships with other people (Hasdiansah, 2013).Bayat (2007) examined two aspects of positive family experiences in raising children with disabilities.First, they asked parents to report the positive impact their children with disabilities had on themselves, their siblings, and extended family members.Second, they asked parents about their opinions about the future of children with disabilities.In the first sample, parents reported several positive influences on themselves and other family members, such as a changed perspective on life, increased sensitivity, support for one another, opportunities to learn, better family dynamics, increased self-confidence and assertiveness, and strengthening of religious beliefs.Then, in the second sample, although some parents expressed anxiety or fear about their child's future, most families generally revealed a positive attitude towards the future of their disabled children.Martinez (2022) reveals that patience has an important role in the success of one's life.According to Al Jawziyah (2019), patience can prevent and restrain the soul from sadness, the tongue from complaining, and the limbs from slapping cheeks, tearing clothes, and the like.Blount and Janicik (in Dudley, 2003) explained patience as an attempt to restrain oneself from cognitive, behavioral, and emotional responses.According to Tajab et al. (2019), patience can be interpreted as surrendering to destiny, giving in, or as an effort to build character education for the good of life.Self-control is the ability to arrange, guide, regulate, and direct behaviors that can lead to positive consequences.Self-control is one of the potentials that individuals can develop and use during their life processes, including in dealing with conditions in the surrounding environment.Selfcontrol is one of the personal competencies that every individual needs to have.Good, constructive, and harmonious behavior with others is influenced by the individual's ability to control himself.
According to Qodariah and Puspitasari (2016), raising an autistic child requires physical and mental health and patience.According to him, patience is a state of endurance in difficult circumstances.Hänsch (2020) explained that patience is a way of expressing hope to realize a long-cultivated vision that remains in mind and becomes a goal.According to Subandi (2011), the psychological concepts closest to the theme of fortitude are resilience and personality hardiness.Maria & Ediati (2018) explained that fortitude has aspects that can involve oneself in activities so that individuals can get an overview of dealing with pressing problems and not give up easily.Kashim et al. (2020) explained that resilience is the ability possessed by individuals to face life's challenges and think rationally about negative events in life, which are quick tests from Allah SWT in carrying out daily life.
The effectiveness of early intervention involving the role of parents determines the success of services for autistic children in the Autism Service Center.No matter how well the government designs therapy services for autistic children, without involving the role of parents, they will be less effective because therapy time in the Autism Service Center is limited.In contrast, autistic children spend more time with their parents.With the findings of this study, holistic intervention involving the Autism Service Center, parents, and autistic children being treated can work well.Solving educational problems for autistic children must start from upstream to downstream.Researchers believe that not only autistic children need to be given therapy services, but parents also need spiritual guidance services so that their patience with autism is more meaningful.For professionals such as psychologists in the Autism Service Center, the findings of this study will be very useful for designing effective patience psychology interventions, especially for increasing patience in parents with moderate to severely autistic children.Researchers are interested in conducting qualitative research on the characteristics of patience in parents with autistic children: a phenomenological study.

Research Design
This study used a qualitative design and adopted a phenomenological approach.A phenomenological method is a model or approach in qualitative research that describes one or more people's awareness or experience of a phenomenon (Hanurawan, 2016).In general, phenomenological psychology research aims to explain situations experienced by individuals in everyday life (Herdiansyah, 2010).This method was used to explore the patient experiences of Muslim parents who cannot educate, teach, and train their children diagnosed with autism.

Study Setting
This research was conducted at the Autism Service Center in Riau Province.This Service Center is a place for children who have disabilities, both psychologically and physically, to get a special education.This Service Center has the vision of creating a quality service center and developing the potential of autistic children towards independence and a better future.The Riau Province Autism Service Center Assessment Team consists of psychologists, occupational therapists, behavior therapists, special education staff, nurses, nutritionists, and public health educators.By 2022, the service center has 57 children who are clients.
In dealing with disorders in autistic children, the Riau Province Autism Service Center has two core programs.The first is a type of integrated therapy service that consists of a) behavioral therapy to help parents control behavior, monitor their child's development, and make children calm and obedient; b) sensory integration to help parents improve and train tool functions such as balance, touch, awareness of body movements, sight, hearing, taste, and inhalation, c) occupational therapy to help parents train their children to care for themselves, such as toilet training, wearing clothes, brushing teeth, combing hair, and improving fine motor skills, such as the ability to hold a pencil to write; d) speech therapy to help parents train how to speak related to the process of speaking, including swallowing, rhythm disturbances (fluency), and neuromotor disorders of other articulation organs; e) physiotherapy to help parents improve gross motor function, muscle function, and range of motion in children with autism.
The second type of transitional education service is learning in transitional classes for autistic children who have progressed to integrated therapy service programs in the Riau Province Autism Service Center and transitioned to inclusive elementary schools or equivalent.This Service Center has a Transitional Education Services Curriculum that includes four core competition standards, as follows: a) spiritual competency standards; b) knowledge competency standards, which include writing, reading, and arithmetic; c) social competency standards; d) skills competency standards; e) competency standards for building yourself.There are also supporting services at the Riau Province Autism Service Center, which include: a) education and training services for parents; b) consulting and information services; c) identification and assessment services; and d) research and development services.Special education experts who work with parents of autistic children specifically manage Transitional Education Services.

Participants
In the list of names received by researchers from the Riau Province Autism Service Center, fifteen potential respondents met the research criteria.Still, only four respondents voluntarily participated in this study and agreed to be interviewed.This study used a purposive sampling technique that aimed to get respondents who met the initial objectives of the study.Researchers set several parameters or conditions that respondents must meet: 1) The parents of an autistic child come from a poor economy (proof of a certificate of inability from the local government).2) The parents of autistic children in this study are parents who have moderate and severe autistic children (based on diagnostic data from the Autism Service Center assessment team).3) Muslim and willing to be involved in research without coercion.

Data Collection
Researchers have developed a set of semi-structured questions to use in interviews with respondents based on the specified problem.The question consists of three parts:

Ethical approval
Before the research began, the researchers obtained verbal approval from the Riau Province Autism Service Center board, and the person concerned asked the researcher for a research draft.After that, the researchers approached the Autism Service Center therapist coordinator and obtained the required Autism Service Center documents and the names of the parents and children with autism that were given to them.
Respondents were asked for their willingness to participate in this study without any coercion, and those who were willing signed an informed consent form before the research was conducted.The researcher distributed questionnaires and interviews directly (offline) to the respondents.During the interview, the researcher first gave a brief explanation to the respondent regarding the research objectives.The data and information provided by the respondents were kept confidential, and their names were replaced with code numbers or initials.Respondents can stop the interview at any time if they feel uncomfortable.Furthermore, the researchers reported the interim results to the Head of the Special Education and Special Service Education Division of the Riau Province Education Office to ask for comments.

Data Analysis
Researchers chose to use thematic analysis techniques to analyze the problems studied.Thematic analysis is one way that can be used to analyze qualitative data, for example, data obtained from in-depth interviews or semi-structured interviews.This data analysis technique is very appropriate when a study aims to explore what happens to a phenomenon.In particular, thematic analysis is used to identify patterns in the object of research (Herdiansyah, 2010).
All interviews were recorded and transcribed verbatim.In analyzing the data, the researchers read the transcription repeatedly until the participants understood the data and potential descriptions.In the next step, the researchers coded the significant phrases, sentences, or statements for this research and captured the identified (descriptive) meanings.Then the data obtained were analyzed reflectively, where the meaning formulated was interpreted into sub-themes.Finally, the sub-themes were grouped into themes and combined into a comprehensive phenomenon.These themes became indepth explanations of the phenomenon, which is patience.

Trustworthiness
According to Lincoln and Guba (1985), trustworthiness in qualitative research is obtained through credibility, transferability, dependability, and confirmability.Confidence in the study was increased through the research team's examination, prolonged involvement in the field, and cross-checking with other data.After the interview, the respondents knew the data or information they provided, and the researcher restated it to clarify whether the information obtained followed the meaning of each participant.As a psychologist, the first author participates in activities for parents of autistic children in Autism Service Center.Prolonged involvement in this field makes respondents voluntarily share their thoughts or feelings openly, sincerely, and honestly, and their comfort is guaranteed.Every detail of data collection activities and interviews was recorded to improve this research's quality.

Characteristics of the Parents with Autistic Children in A Therapy Service Program at the Riau Province Autism Service Center
Parents who take part in the Autism Service Center therapy service program are required to be able to cooperate with Autism Service Center to accelerate the development of their autistic child.Autism in the DSM-V is referred to as Autism Spectrum Disorder (299.00:F84.0), characterized as a persistent deficit in social communication and social interaction in a variety of situations, including deficits in social reciprocity, non-verbal communicative behavior used for social interaction, and skills in developing, maintaining, and understanding relationships (Mudjito et al., 2014).Faced with these characteristics of children with autism, parents need patience.According to Subandi (2011), Western psychology has studied patience; however, the terminology used is not patience but self-control.Dewi & Widiasavitri (2019), in their research on the resilience of mothers with children with autism, found that resilience is one of the factors that help mothers carry out their parenting role optimally.According to Maxwell (1979), patience is a form of human virtue critical of faith, the right to freedom of choice, attitude to life, humility, and suffering.Research is needed on the characteristics of patience in parents with autistic children as a phenomenological study to succeed in the vision of education in Riau Province Autism Service Center.The flowchart of this study can be seen in Figure 1.

Respondent Demographics
A descriptive analysis was used to explain the demographic profile information of the respondents.In this study, 15 parents with autistic children were included in the list the Autism Service Center gave as potential participants.Of these, only four people were willing to participate in the offline interview.Table 1 shows the demographic summary of the research respondents, while Table 2 shows the demographic summary of the respondent's children with moderate to severe degrees of autism.To maintain the confidentiality of the respondents, the researchers labeled each respondent with an initial code.

Characteristics of Parents with Autistic Children
Three characteristics that describe the characteristics of patience in parents with autistic children include: 1) Patience, which has the characteristics of self-control.2) Patience, which has the characteristics of grit, resilience, and hardiness.3) Patience, which has the characteristics of faith in Allah SWT.

Patience as Self-Control
The first respondents in this study were Muslim parents of children diagnosed with ASD (Autistic Spectrum Disorder), undergoing transition class education services and integrated therapy services at Autism Service Center in behavior therapy, occupational therapy, and speech.When this research took place, the child was studying at the Inclusion Elementary School, and the child was classified as having a moderate degree of autism with the ability to educate and teach, as contained in the Riau Province Autism Service Center document.
A questionnaire for Muslim parents' involvement in education, teaching, and training was filled out by parents as follows: "In dealing with a child's situation like KH's, you must be more patient because sometimes children like to sulk while studying.Sometimes, when my child wants to learn, he is excited to learn.We, as parents of autistic children, really have to be patient when educating children at home full of anger.(subject 3) The interviews with parents who have autistic children in Autism Service Center are as follows: "Now I don't feel too sad.How can I not be sad to see the poor condition of my child?I used to cry a lot before, but now that I'm getting stronger, maybe I've been trained to be patient.In praying, I always ask for patience and to keep going.Thank God, over time, my child has developed a lot, which I can feel thanks to that patience."(S3, B47-51) The second respondent in this study was a Muslim family of children diagnosed with ASD (Autistic Spectrum Disorder), accompanied by hyperactivity, undergoing transition class education services and integrated therapy services at Autism Service Center in the form of behavior therapy and sensory integration.When this research was taking place, the child was attending a special school, and the child was included with a moderate degree of autism and teaching ability, as contained in the Riau Province Autism Service Center document.
A questionnaire for Muslim parents' involvement in education, teaching, and training was filled out by parents as follows: "When my child has a tantrum, I have to be able to hold back my anger and embarrassment and be patient in holding back what many people say.My child is autistic and has lots of strange behaviors that make me emotional.As a parent of an autistic child, I have to control my anger and be firm.I have to keep my words from saying things that are not good for my child."(subject 4) The interviews with parents who have autistic children in Autism Service Center are as follows: "My son was difficult; he couldn't stay still until I almost got into a fight with my next-door neighbor.The one causing the problem is my child, but I, as a parent, have to be patient in accepting my child's condition as it is, but it's not like that with most people.I think an autistic child is a gift from God that will take me to heaven.That's why I'm patient, so my child is the child of heaven for me in the afterlife ". (S4,B8-13) Researchers found the characteristics of patience as above: patience does not mean being pessimistic about life, even though there is a passive attitude toward solving problems.Holding back feelings of anger and sadness, forgiving, praying for patience from Allah, and hoping for heaven are the characteristics of this patience.Hagger et al. (2021) explained that self-control is an individual's ability to set and develop long-term goals and understand and predict the consequences of future actions.Kuhl (1984) said self-control is similar to self-discipline, which consists of impulse control and reducing active actions or behaviors within the individual.According to Subandi (2011), self-control in psychological patience is related to holding back emotions and desires, thinking long-term, forgiving mistakes, and tolerating delays.

Patience as grit, resilience, and hardiness
The third respondent in this study were Muslim parents of children diagnosed with ASD (Autistic Spectrum Disorder) accompanied by hyperactivity who were undergoing integrated therapy services at Autism Service Center in behavior therapy, sensory integration, and physiotherapy.When the research was taking place, the children attended education at Special Schools (SLB), and children were included with a degree of severe autism and the ability to train, as contained in the Riau Province Autism Service Center document.
A questionnaire for Muslim parents' involvement in education, teaching, and training was filled out by parents as follows: "My autistic son ZM needs attention compared to my other normal children.The concept of being patient for me is always to teach ZM in a loud but firm voice, even though sometimes in the neighborhood, maybe they think it's strange when I teach ZM in a loud but firm voice, especially my family.I often protest the way I teach my child ZM. (Subject 1) The interviews with parents who have autistic children in Autism Service Center are as follows: "Once, I was offered a job.If I accept the job, what about my child, who can't be left alone?Why is his son not My child is autistic; if he is put in a daycare for children with special needs, the costs will be expensive, and my salary will not be enough.I consulted my husband: "What if I accept this job offer, but ZM has no one to take care of it later, while ZM can't stay silent and talk yet?"My husband said there was no need to accept.We need materials and money, while my husband just got laid off.Because I am the mother of an autistic child, I don't trust anyone, not even my husband.While I'm still alive, let me take care of it.My husband and my patience as parents of autistic children are indeed being tested by God.So when my husband was unemployed, I saw a laundry on the side of the road.It occurred to me to do laundry at home to meet my family's economic needs, but not long after I opened the laundry, my husband got a new job.I closed my laundry business to focus on raising my autistic child with the patience I have for caring for autistic children, even though I received quite a bit of income from the laundry business."(S1,B47-62) The fourth respondent in this study were Muslim parents of children diagnosed with ASD (Autistic Spectrum Disorder), accompanied by SPD (Sensory Processing Disorder) of the Avoidance Sensory/SUR (Sensory Under Responsiveness) and Impulsive types, undergoing integrated therapy services at Autism Service Center in behavioral therapy, sensory integration, physiotherapy, and occupational therapy.When the research was taking place, the child was attending a special school (SLB), and the child was a person with severe autism who could train, as contained in the Riau Province Autism Service Center document.
A questionnaire for Muslim parents' involvement in education, teaching, and training was filled out by parents as follows: Alhamdulillah, Allah entrusted me with this unique autistic child.Until now, thank God I'm patient; obviously, this is a deposit I must take care of until my child can be independent.Hopefully, all of this has a silver lining.Hopefully, it will become a field of reward for my family, and this will be a highway to go to God's paradise" (subject 2).
The interviews with parents who have autistic children in Autism Service Center are as follows: "In my house, I can't install ceramics or anything else, so my house can be considered empty.My house is not like a house in general; maybe if it's a normal person's house, it can still be clean and tidy.No matter how hard I clean the house, my autistic child keeps making it messy.Sometimes I say to myself, "Nothing's wrong with guests," so that's how I faced that typical AA.AA likes to run; if I take him to the bathroom late, he will pee all over.At work, my husband and I often mop the house because of the dirt from our autistic child.If we are tired of cleaning our house, then our house smells bad.AA likes to play with his spit.If an autistic child cannot understand right away, then my autistic child is slowly being taught and trained by me to behave well, even though it takes a long time."(S2, B74-B93) Researchers found that the characteristics of patience, as described above, seem like a test from Allah SWT and are a challenge that needs to be undertaken voluntarily so that parents of autistic children get heaven in the afterlife.Fortitude, resilience, personality hardiness, and belief in heaven's reward in the afterlife characterize this patience.Resilience is often defined as the ability to adapt, cope, face adversity, and bounce back from difficult situations.According to Reich et al. (in Dewi & Widiasavitri, 2019), resilience is the result of a successful adaptation to adversity, which is characterized by the capacity to regain balance in physiological, psychological, and social relationships, as well as the capacity to move forward in facing adversity.Manyena (2006) explained that resilience could be interpreted as achieving results centered on faster recovery from adversity.According to Subandi (2011), grit, resilience, and personality hardiness in the psychological concept of patience are related to survival in difficult situations by not complaining.Abdollahi et al. (2018) added that hardiness is an effective personality characteristic for dealing with stressful situations.So, hardiness is a tough personality trait with the ability to survive stressful situations and respond to challenges as a personality enhancer.

The belief system as a source of patience
Researchers found economically disadvantaged Muslim parents who had autistic children in this study, and they associated the spirituality of their patience in educating, training, and teaching autistic children with a belief in Allah.Even though their child's development is unexpected, parents still try to be patient because they want to hope for God's heaven.The researchers found patient characteristics in the respondents above, even though they sometimes seem passive.Still, according to Zainal et al. (2021) patience is an active character in this research.The spiritual aspect is a positive source for each parent of an autistic child to hope, attract, and express personal feelings.Prayers and requests became a strength for the respondents facing difficult days.All the respondents studied were Muslims.Therefore, they seek strength in religion through spiritual activities.Islam places great emphasis on contentment in accepting destiny.
Every human being cannot be separated from the test to lift him to a better and higher position as a servant of God.This belief and trust, in turn, facilitate the acceptance process and reinforce their belief in their struggle to help these children.
The following is a summary of the findings on the characteristics of patience in parents with autistic children: First, Holding back feelings of anger and sadness, forgiving, praying to Allah SWT to be given strength in patience, and hoping for heaven are the characteristics of patience in Muslim parents from economically disadvantaged families whose children are diagnosed with autism with moderate degrees and undergoing therapy at the Autism Service Center.Second, Fortitude, resilience, personality hardiness, and belief in heaven's reward in the afterlife are the characteristics of patience in Muslim parents from economically disadvantaged families whose children are diagnosed with autism to a severe degree and who are undergoing therapy at the Autism Service Center.Third, Researchers found that in all research respondents, Muslim parents associated their spirituality of patience in educating, training, and teaching autistic children with the belief that Allah will get them to heaven.The patient characteristics of all respondents contain an active pattern of patient characteristics in the findings of this study.

CONCLUSION
The characteristics of patience in parents whose children are diagnosed with autism with moderate degrees are holding back feelings of anger and sadness, forgiving, praying to Allah to be given strength in patience, and hoping for heaven.This characteristic of being patient does not mean they are pessimistic about life, even though there seems to be a passive attitude toward solving problems.The characteristics of patience in parents diagnosed with autism with severe degrees are grit, resilience, hardiness, personality, and belief in heaven's reward in the afterlife.This characteristic of being patient gives the impression that a test from God is a challenge that needs to be undertaken voluntarily.The characteristic of patience in all respondents is connecting the spirituality of parental patience with autistic children in educating, training, and teaching with faith in Allah, who will get them to heaven.The characteristics of patience in all respondents to the findings of this phenomenological study are that they contain a pattern of active patient characteristics.This study will contribute to educational, positive, clinical, and Islamic psychology.The Riau Province Autism Service Center needs to realize its vision by providing Islamic spiritual guidance to workers who have never had a work formation to make parents' patience more meaningful.
Future studies need to explore the problem of the characteristics of patience in Muslim parents with autistic children, involving research subjects from Muslimmajority countries such as Malaysia and Brunei.The next research is expected to explain the characteristics of patience found and whether they have similarities when carried out in other countries.Researchers believe religion, culture, and gender form the characteristics of patience in individuals.Limitations in the form of subjects who tend to be homogeneous in this study must be considered by future researchers.Undeniably, the mother is the figure most involved in the development of children in Indonesian culture; however, differences in circumstances and situations based on gender and responsibilities in the family may also provide different experiences in treating autistic children, especially in children with autism and aspects that require patience in them, so it is possible to enrich the findings in research.
Hopefully, the problem of the characteristics of autistic children's parents with low incomes can continue to be focused on through further research.The characteristics of patience in parents with autistic children are complex phenomena because they depend on the individual experiences of parents with autistic children.These issues must be explored to ensure this study has not revealed other patient characteristics.The subjects' detailed, personal, and reflective stories exemplify patterns of unique patient characteristics.Another thing that is considered important to be of concern to academics, practitioners, and Islamic psychology staff is the need for treatment, such as an Islamic counseling design that can increase the patience of parents with autistic children effectively so that parents with autistic children can use resources in the form of patience in educating, teaching, and training their autistic children.
Part A: Demographics In this section, the researcher asks research questions by digging up data on Muslim parents whose children have been diagnosed with moderate to severe autism based on assessment data for autistic children owned by Riau Province Autism Service Center.Part B: Experience as a Parent with an Autistic Child In this section, the researcher explores the subjective experience of the patience of Muslim parents who are economically disadvantaged and have children diagnosed with moderate and severe degrees of autism who are being treated at Riau Province Autism Service Center.The respondents to this study were parents who were actively involved in educating, teaching, and training autistic children.Researchers use questionnaires and interviews.Part C: Characteristics of the patience of parents of autistic children In this section, researchers explore and investigate the characteristics of parental patience to find out the results of field research.

Figure 1 .
Figure 1.Chart of the Phenomenon Characteristics of the Patience of Parents with Autism Who Participate in the Education Program at the Riau Province Autism Service Center

Table 1 .
Respondents' Demographics of Parents with Autism