Autism Care: Stress Factors for Parents

CHAPTER 1

1.0 INTRODUCTION

There has been a dramatic increase in the prevalence of ASD among children over the past few decades (Dillenburger et al., 2014). From 1 in 110 children in 2009 (Centre for Disease Control and Prevention, 2009), 1 in 50 children in 2013 (CDC, 2013) and in one of their investigations, the Centre for Disease Control concluded that autism affects at least one child out of every fifty-nine children in the United States, meaning that one in every 37 boys and one in every 151 girls are diagnosed ASD disorder. ASD is a developmental disorder which involves symptoms such as abnormal communication, impaired social functioning and repetitive restrictive interests (Anagnostou et al., 2015).It is a neurodevelopment disorder in which multiple environmental and several other factors play critical (Anagnostou et al., 2015). According to Chahrour et al. (2016), the diagnosis of ASD condition seems very common in the developmental years of children. However, the caring cost of each child with ASD during their lifetime is estimated around £3.1 to 4.6 million in the United Kingdom (Knapp et al., 2009). The term ‘autism’ is also referred as ASD. It can be identified as a developmental condition, which is often called a disorder among children. The condition is often comprised of certain challenges as well as differences in social communication and interaction skills. Autism in children can indicate a difference in gross motor skills, delay/dissimilarity in speech as well as several other intellectual capabilities. Chang and Locke (2016) also reported that children with autism disorder tend to possess a wide range of specific symptoms based on communication, reasoning, mental ability and others. While explaining this condition, scholars have explained that the condition of ASD tends to last throughout the life of a human since there is no apparent, tested, developed, explored or suggested cure available for it. The study of Beversdorf and Consortium (2016) had highlighted and discussed the unique challenges faced by parents, caregivers and primary guardians of children with ASD such as problems in communication, regular health care check-up, facilitation of extra care, and many more. Brondino et al., (2015) also noted that the primary caregivers of children with ASD are usually obliged to take on additional responsibilities that are related to the diagnosis, behaviour, assessment of the health in their day-to-day lives. Chahrour et al., (2016) further declared that parenting children with autism spectrum are an important area of concern because it has become significantly challenging and stressful as compared to parenting children without ASD. As a result of the increased level of stress, parents have reported many health-related problems that link back to their social and emotional well-being (Anagnostou et al., 2015). My 100 days placement falls within the context of children and family social work setting. This has allowed me to come into contact with and work with children who have been diagnosed with ASD and their families. I have also seen how parents (especially mothers) become over-protective of their children, taking on so many responsibilities that they often end up ignoring both their own social health needs and those of their other children to meet the growing demands of the children with ASD. There is a restrictive impact on the type of activities that mothers could engage in; and they spend less time with their partner and other children, making them feel unloved. I have also found the opportunity to experience first-hand the suffering of parents of children with ASD physically but what was not easily measurable was the impact of the disorder on the parent's emotional and social health (Casehiser et al., 2015).

The proposed research will focus on examining the impact on parents having children with ASD. The researcher will achieve this aim, through finding answers for the following specific questions; What is the concept of ASD? What are the responsibilities of parents having autistic children? What is the impact on parents of having children with ASD in terms of their social and emotional health? What are the recommendations for parents and caregivers having children with ASD?

2.0 Research Rationale/Why it is Important?

The numbers of children diagnosed with autism are increasing day by day. Even though the available literature successfully offers evidence of a high level of appropriate as well as effective parenting among parents of autistic children. However, the literature lacks in-depth information about the suffering of parents having ASD children or with such disorders or needs. It has become appropriate to determine the emotional and social stability of parents who are dealing with children with special health care needs or other related developmental disorders (Casenhiser et al., 2015). Therefore, the proposed research will be sought to explore the impact on parents having autistic children, with particular attention to their social and emotional health. In light of the increase in the recent diagnosis of ASD among children, and my experience of working with them, it seems reasonable for me to explore the impact of the disorder on the quality of life of the parents about their emotional stability and social health. I also feel that knowledge gained from the extensive review of literature may contribute towards good practice, helping to develop a good understanding and knowledge strategies. Only after this analysis, will the researcher be able to explore the measures that parents take for maintaining their social as well as emotional states.

2.1 Research Methodology

I initiated my search by entering the term ‘impact on the parent of ASD children’ on the university library organisation A-Z, which consisted of a list of online e-journals, databases and books on the blackboard. The search produced over 35,000 records requiring further refining of the research term/s. ‘Desk Research’ which is often used for most of the approaches in finding relevant literature that helps the researcher in the area of clarity and provision of answers to the research question. Further results were obtained by using the electronic search engine Google, which enabled the researcher to access a wide range of relevant material and information on the current study. Keywords used within the literature review include ASD, parent of ASD, impact on parent of ASD children, social health, emotional health of the parent, prevalence and experiences of having ASD children (William, 2006). The inclusion criteria include studies from 2007, United Kingdom, peer-reviewed. Exclusion criteria include studies from the 1960s to the 1980s. In terms of data collection, the researcher has compared two main methodologies for the attainment of research goals such as quantitative and qualitative approaches. Creswell (2013) affirms that quantitative research studies tend to reveal subjective perspectives of lived social and psychological realities. In other words, according to William (2006), where qualitative research attempts to look into why a problem occurs and the variety of meanings that are ascribed to psychological and social occurrences (William, 2006). Additionally, different perspectives of positivistic and interpretative ideology have had a great effect on the types of research designs that are employed by qualitative and quantitative researchers, who utilise statistical research methods such as surveys and questionnaires to arrive at a conclusion. Qualitative researchers are often inclined to use ethnographic research designs in examining the people’s behaviour and interaction with others in their own setting (Creswell, 2013). In the context of the present investigation, researcher has focused on qualitative methods of investigation. Herein, the data collected from the secondary sources have been assessed and evaluated using thematic analysis. Different themes were developed that helped in evaluating the secondary data and present the study (McCusker and Gunaydin, 2015). In the context of the present investigation, the quantitative approach of data collection has paid significant attention to the examination of secondary data in which the researcher has analysed the views of different authors, findings of past studies and different theories in the section of critical literature review. Therefore, the research has selected a narrative approach using thematic analysis which has been applied for analysing different findings based on the literature through different themes (Ledford and Gast, 2018). However, the researcher faced some limitations during the use of these resources while performing desk research. This is because this method assisted in answering the research question through updated sources of information. Apart from that there were also outdated resources that took up the researcher’s time in terms of reading outdated resources and discarding them for lack of current information to support the study.

2.2 Significance/ Why it has Salience for Social Work Practice?

Children are now diagnosed with ASD at a growth rate of 1.148% each year, which is the fastest-growing rate of any developmental disability (Autism Society, 2019). More often, social workers come in contact with children diagnosed with ASD in a variety of settings, including schools, day-care, child welfare settings, social service organisations, clinics and mental health treatment facilities. Therefore, Social workers are, therefore, found to be very useful when intervening simultaneously in more than one system. Additionally, social workers are among the professionals who work with children with ASD and have moved to the forefront in the areas of case management, community interaction and social skills training (Dababnah et al., 2010: 2011). Social workers provide parents and family members with support relating to emotional stress as well as signpost them to resources that may benefit the child with ASD and his family. Using a holistic approach, social workers can provide the parent and family members with education and information about the diagnosis, assessment and available treatment and support. Social workers are also able to support parents in exploring and managing their feelings about the diagnosis and other siblings, and through partnership working. Therefore, parents are able to liaise with other professionals involved in care coordination, as well as collaborate in a care plan to assist the child with ASD meet his or her educational goals (Autism Ontario, 2011). The research may be helpful in the context of social work practice since social workers frequently come in contact with parents of children diagnosed with ASD, and knowledge gained from this research may equip social workers in providing support along with the professional understanding or resources. Especially, it helps families receive an early diagnosis if parents can identify signs of Autism in a child. Finding from the current research can also help in improving awareness among practitioners about the emotional as well as social needs of parents who are having autistic children. Consequently, the research can facilitate concerned entities in developing effective measures and actions that can improve the quality of life of parents who have children with Autism.

CHAPTER 2

2.0 Introduction

The chapter is framed to evaluate different aspects of the social and emotional health of parents who have children with ASD. These elements are highly correlated social and economic life of parents. In this respect, various theoretical approaches and models are analysed to have a logical understanding of different elements of ASD among children and the way it is impacting on their parent’s daily lifestyle. This section examines different concepts regarding Autism Spectrum Disorder. An appropriate conceptual framework is being developed for having insight into the logical information related to the study.

2.1 Concept of ASD

Christensen et al. (2018) stated that ASD refers to a complex neurodevelopment disorder which is characterised by inappropriate and repetitive behaviour as well as difficulty in making social communication. The Diagnostic and Statistical Manual of Mental Disorder (DSM-5) has included childhood disintegrative disorder, pervasive developmental disorder and Asperger Syndrome as part of ASD rather than considering them as separate disorders (dhss.delaware.gov, 2019). Individuals having ASD show symptoms such as inability to share their emotion or interest in framing communication, difficulty in back-and-forth interaction, issues with non-verbal communication, difficulty in maintaining social relationships, executing repetitive motions or speeches and others (Da Paz et al. 2017). As per investigation of Zwaigenbaum et al. (2015), it has found that children with ASD are often seen to avoid making eye contact with others while communicating and often fail to respond to names. They also are unable to understand the way they are to interact and play with other children. This condition of ASD among children has enhanced their dependence on their parents for support so as they are not self-sufficient to lead their own lives and perform everyday activities. The study of Conner and White (2018) reported that children with autism are believed to be having social impairments. In fact, they often lack the intuition about others that people can take for granted. This is because children with ASD face several issues in communication and understanding of social relations. These complexities can affect the ways in which people interact and communicate with others.

2.2 Risk Factors or Causes of ASD among Children

The hereditary factor can be considered as an important cause of ASD in children because the presence of ASD within an immediate family member enhances the risk of the presence of the mutated gene related to ASD that could be passed on to the child during birth (Robinson et al. 2016). The presence of fragile X syndrome is regarded as one of the causes of ASD among children. The investigation of Mohamed et al. (2015) stated that the exposure to heavy metals as well as environmental toxins enhance the risk for ASD in the children as they lead to creating mutation of the gene to develop intellectual disability. Children who are born to older parents have the risk of having ASD because the ageing sperm used in reproduction are seen to have chances of having an increased number of mutations that can be passed on to the child making them develop different disorders such as ASD (Lee and McGrath, 2015).

2.2.1 Comparison of different models to evaluate the causes of ASD among children

As per the Genetic Model of ASD, it has addressed that the presence of a spontaneous genetic mutation or de novo can influence risk for children to develop ASD. The de novo mutation refers to a systematic process that creates a sequential probability of the emergence of deoxyribonucleic acid which is identified as a hereditary factor in humans. This is seen to occur in the sperm or egg of the parents during fertilisation. The mutation created in each cell when the egg divides and different elements of hereditary spread within the body of the child. These kinds of mutation have the ability to affect single genes or create deletion or duplication in different copies of genes leading to create copy variations (Buja et al.,2018). In recent studies, it has been addressed that individuals with ASD are prone to have increased copies of the de novo gene mutation compared to others without ASD (Alonso-Gonzalez et al., 2018). On the other hand, Neurological Model of ASD has stated that the presence of excitatory/inhibitory (E/I) ratio is considered as the factor that could be termed as an important cause of ASD. The imbalance in E/I ratio results decreases in the level of GABAergic signalling or increases in the level of glutamatergic agents (Kuo and Liu, 2018). However, the study by Nelson and Valakh (2015) has found that the activity of inhibitory GABAergic parvalbumin-positive interneurons and pyramidal glutamatergic neurons determines the E/I ration in the neocortex region of the brain. In addition, this ratio can be modulated by using minicolumns. The minicolumns include neurological aggregations, where interneuronal, efferent and afferent connections are established interaction between neuronal microcircuits. In ASD, these neuronal circuits are pathologically altered so as the individuals with ASD would find behavioural and social communication issues (Nelson and Valakh, 2015). Therefore, understanding of key drivers of ASD within children has provided great support to health care practitioners along with parents while performing a systematic diagnosis of ASD among children.

2.3 Assessment of different theories of ASD

2.3.1 Mind Blindness Theory

The Mind Blindness theory has determined that children, affected by ASD face delay in mental development so as children are unable to put shoes themselves (Baron-Cohen, 2016). As per the study of Edey et.al. (2016), it has addressed that a person not only tries to make sense of other people’s behaviour while reading other people’s minds but also particular individual thinks of a different set of mental interests so that the person can predict what other people are going to do next. Since these functions are unable to be carried out by ASD children because these they experience mind-blindness where they consider other people’s behaviour to be unpredictable and confusing in nature as well as frightening at times (Edey et al.,2016). This theory further explains that children with ASD cannot understand social brains because they are often unable to assume the difference between truth and falsehood. Therefore, children with mental disability always consider that all individuals are telling them the truth and at times they may be seemed to be shocked by the idea that the other person may not say what they are actually meaning (Gómez et al.,2017). Apart from that this theory is unable to explain the reason behind the non-social features shown by the ASD individuals.

2.3.2 Theory of Mind

The theory of mind is referred to as the ability which neurotypical individuals have for representing their mental state regarding others. This ability is seen to appear innately among the first developmental stages of the children, as a result of which they are able to understand social cues (Livingston et al. 2019). However, this ability is seen to be impaired in ASD children, due to which they are not mentally able to deal with the anticipation of intentional behaviour. This theory also determines that ASD children or individuals to move in a mentalist terrain is difficult compared to neurotypical people because neurotypical individuals have the ability to conclude which information is not explicit whereas this ability is not present among individuals with ASD. Thus, individuals with ASD require breaking social behaviour in smaller pieces for gradually learning and understanding them (Jones et al. 2018).

2.3.3 Theory of Weak Central Coherence

The theory of Weak Central Coherence mainly determines the difficulties of ASD individuals experience to include information in the form of a single coherent aspect and general focusing on attention to detail (Vanegas and Davidson, 2015). There are two parts to the theory, one of which is perceptual and another conceptual. The perceptual part of the theory determines that ASD individuals have a preference to process local information at first rather than the global information (Riches et al. 2016). Therefore, ASD children are going to focus on specific details of a particular scenario. The conceptual part of the theory presents that ASD individuals have failed to examine the contextual meaning before assessing the actual knowledge (Kvarme et al., 2016). This means that children with ASD are unable to understand the conditions they have seen before. Therefore, the theory informs that ASD people are local information processors, whereas neurotypical people are termed as global processors. This makes ASD children less susceptible to any form of optical illusion, and due to local processing skills (Baron-Cohen, 2016).

2.4 Challenges and Responsibilities of Parents Having Children With ASD

Parents having children with ASD have to face different challenges in daily life. Children at the age of two may often become self-trained to go to the toilet, but children with ASD at this age may experience a delay in toilet training and often still require assistance from their parents to go to the toilet. It increases the care burden on the parents because parents have to manage extra effort to manage basic daily life routine of children with ASD (DePape and Lindsay, 2015). Parents who have children with ASD may have to help their children in every facet of life, which creates stress and anxiety among the mothers who are identified as key caregivers. In this context, Souders et al. (2017) stated that parents having ASD children are experiencing high level of stress due to a feeling of uncertainty for the future of their children regarding how the children would meet their needs after their death since they are perceived as the key caregivers. The investigation of Herlihy et al. (2015) has found that children with ASD are not having the efficiency in carrying out basic social interaction properly so as they are often left alone. This often increases the responsibility for the parents to look after their children all the time and provide them appropriate company so that children do not feel isolated (Herlihy et al. 2015). Furthermore, children with ASD are addressed inefficient language and speech comprehension ability so as these individuals are unable to interact with other individuals in proper manner to inform their needs and demands. As a result, the responsibility of being the mediator communicator often falls on the parents, since they are the caregivers, making them spend their entire time accompanying their children so that they are able to interact with others (Vasilopoulou and Nisbet, 2016). Moreover, children with ASD may show a different nature of restricted behaviour and memory issues, due to which they are unable to form bonds with others except for their parents. This is because they develop trust for their parents, who then spend most of their time with the child to ensure their safety. Thus it leaves less time for parents that could be spent for enjoying their own lives. Therefore, parents would find social isolation because they cannot manage their leisure time and other travelling activities with other friends and family members (Souders et al.,2017).

2.5 Models to Ease the Responsibility and Challenges of Parents with ASD’s Children

2.5.1 Intervention Model

The intervention model in ASD determines that healthcare practices must be targeted as per the interests of family members, child and social environment. All these elements are required to be coordinated in such a way so as parents and their children could assess the appropriate level of benefits. It requires the involvement of different social and health resources such as Early Intervention Centres, Kindergarten, Community environment and family environment. The intervention model informs that healthcare services and other facilities must be provided with the aim to promote adaptive features of the child with ASD to the community and social environment so as children can reach individuality and autonomy that play critical role in providing relief to the parents from their concerning responsibility of being the key caregiver of the child for all of the time. Moreover, the intervention is to be provided in such a way so families could get appropriate knowledge and understanding of different strategies so as parents are able to promote a better atmosphere for the child as well as themselves also (Salomone et al..2016; Zwaigenbaum et al.,2015).

2.5.2 Transtheoretical Model

The transtheoretical model presents the systematic way so that changes in behaviour can be created to ensure better health of individuals. As mentioned by Prochaska et al.,(2015), the six stages of the transtheoretical model are pre-contemplation, contemplation, preparation, action, maintenance and termination. In the pre-contemplation stage, it is perceived that people are unaware of their problematic behaviour and the way it is creating negative consequences (Dost and Goldschmidt, 2019). This means parents of children with ASD are at first required to be made aware about the daily life activities and health because the increased burden of care of their children, is not only affecting their personal life but also the care and health of the children. It is to make them realise that they are to change their behaviour and thoughts for the betterment of both. In the contemplation stage, it is mentioned that people are to be made to identify the pros and cons to change the identified problematic behaviour or thoughts (Zhang and Liu, 2019). This indicates that parents of children with ASD are encouraged to enhance their understanding of the potential pros and cons of proposed changes that would be considered by parents to deal with children’s problematic behaviour. This kind of situation emerges because parents are experiencing the extra burden of care of their child. In the preparation stage, a wide range of actions are to be taken to implement changes (Kronenberg et al.,2015). Therefore, parents of children with ASD have to think about the efficiency of actions that could be taken by theme to ease the burden of care of their child. By evaluating the efficiency of proposed alteration, both individuals find positive experience results. In the action stage, it is seen that people are found to have already changed their behaviour, and they may show modified problems that need to be resolved in future (Zhang and Liu, 2019). Therefore, Dost and Goldschmidt (2019) argued that parents of children with ASD should have to evaluate the efficiency and reliability of their newly changed actions to ease the burden of care that is impacting on the life of parents and children. This assessment assists parents to resolve further issues through properly framed new strategies. In the maintenance stage, the changed actions are to be sustained for more than six months, and the intended changes remain in the application for the coming days (Dost and Goldschmidt, 2019). This indicates that parents of children with ASD have to implement proposed changes in such manner so as these changes would remain implemented without emergence of any further issue. All these factors provide assurance to parents about the less burden of care and effective management of personal life.

2.6 Evaluation of different theories to Understand Responsible Behaviour of Parents Having Children With ASD

Teo and Lau (2018) determined that parenting to ASD is identified as a very critical task for parents. However, parents can consider positive behaviour and thoughts while dealing with daily life events. It would support parents in dealing with stress and other problems. In this context the Reasoned Action Theory has determined that human behaviour is mainly managed by their rational thoughts and attitudes. These attitudes are mainly shaped by subjective beliefs and norms, as well as situational factors (Montano and Kasprzyk, 2015). Therefore, this theory has addressed that social norms and beliefs are responsible for creating increased responsibility on the parents having children with ASD, which are leading them to have a less personal and social life for themselves. The fact is evident because, in all societies, the parents are regarded as the sole caregiver of the child so as they are always sacrificing their personal lives to ensure effective growth and development of their children. However, if parents have failed to manage these activities due to certain causes then the parents would be regarded as careless in caring practices towards their children (Pickles et al..2016). Besides, many parents believe that dependence on external caregivers for the care of disabled children showcases their lack of love and irresponsibility towards their child because the external caregivers are not trusted to deliver proper care (Teo and Lau, 2018). Therefore, this approach has paid significant attention to sharing parent’s responsibilities and additional burden of care with external caregivers so as parents are able to manage their personal and professional life in an appropriate manner. On the other hand, the theory of planned behaviour has addressed that attitudes and behaviours of individuals are mainly influenced by three constructs of belief such as expectation from others, beliefs regarding consequences and things that can support or prevent their behaviour (Finke et al.,2015). In the case of parents having children with ASD, it is seen that the family and society expect that the parents are required to provide all nature of care to the children as it is their sole duty. This theory has opposed the argument about the usage of the external caregiver because these individuals cannot meet the care needs of their child in an appropriate manner. Therefore, it has paid significant attention to sole responsibilities of parents, but it has not considered the social and emotional health of parents.

2.7 Key Drivers of Stress Level during the Parenting Activities of Children with ASD

In different studies of autism spectrum disorder (ASD), the majority of findings have addressed the ASD in the form of three peculiar symptoms: restricted and repetitive patterns of behaviour, impaired social relations and inappropriate communication. Pisula (2011) argued that it is important to identify all kind of developmental difficulties among children that are severely distressing for parents. This is because there is no generally accepted relationship between the gravity of children’s impairment and stress level in parents of children with ASD. Some researchers give an account of this relationship (Hasting and Johnson, 2011; Hoffman et al., 2008) but not all researchers have affirmed their results. Therefore, different investigations have identified different drivers of negative mental health and stress of parents. The study of Tobing and Glenwick (2002) has identified the children’s limited communication as key driver of stress among parents. Communication deficiencies are notable across a range of verbal and non-verbal skills such as gestures, intonations, facial expressions and posture. ASD children struggle in terms of using communication to regulate their social relations. Therefore, parents of children (especially mothers) with autism take high level of stress that is associated with children’s inability to participate in interactions and social communication. This is because social communication and learning can be termed as a key element of mental growth and understanding of children who are associated between two and seven years of age (Tomanik et al., 2004). Konstantareas and Papageorgius (2006) supported the above findings and stated that mothers of children with autism reported higher stress levels when their children have poor communication skills. All these factors lead negative impact on social life of parents and their relationship with friends and other family members. The investigation of Matson and Rivet (2008) reported one of the most common determinants of parental stress levels that can be associated with behavioural problems of children with ASD. It includes a variety of problems such as aggression and self-injury. This is because self-injury, aggressive or destructive behaviour influence negative impact on the social life of parents along with their children. Therefore, parents cannot manage their personal and professional life in an appropriate manner.

As per the research of Pisula (2011), it has found that another contributor to parental stress is lack of information. It is a known fact that parents of children with autism must learn to cope with their child’s developmental disability and challenging behaviour as well as the upsetting responses of others to the child’s behaviour so as the lack of knowledge about the disability and problems of children can play a key driver of stress. ASD remains a relatively unknown condition (Huws and Jones, 2010), meaning that there is still much to be done by the authorities in terms of educating the populace for their attitudes to change towards children with ASD and their families. Lobst et al. (2009) argue that it has been proven that the ways and manner of providing information or enlightening society about the disorder remarkably affect the attitudes and acceptance levels for this group of people (Lobst et al., 2009).

2.8 Assessment of Societal Attitudes towards ASD

Kinnear et al. (2016) stated that Parents of children with ASD suffer from the associative impact of social stigma regarding their children because children with ASD have no physical markers of their disorder. Therefore, when these children behave inappropriately in society then it leads criticism of the parents for their inability to control and discipline their child. As asserted by Thibodeau and Finley (2017), parents of children with ASD are unable to explain the issues with their children so as they are being humiliated for improper actions by the child in society. The author further argued that parents are internalised all the external criticisms by assuming it was their responsibility to manage the child and they have failed in this responsibility. This informs us that parents with children with ASD can be blamed for having little control over the condition of their child in society, leading to them becoming depressed, thinking that they are unable to ensure proper care of their child. As per the study of Chan and Lam (2018), it has found that attitude of society plays a critical role in well-beingness of social and emotional health parents with ASD children. In the context of social learning of children, schools are playing key role. Humphrey and Lewis (2008) argued that children with ASD are more likely to be excluded from school than other groups of individuals It has addressed that teachers have a significant role to play to promote inclusion of pupils with ASD but more negative the relationship is developed by teachers with the group of children with ASD because teachers are giving less preference to ASD children and not considering the problems of parents (Barnard, Prior and Potter, 2000; National Autistic Society, 2003). It could become a potential problem because various difficulties in social interaction are faced by children with ASD. All these factors have placed them at risk of negative social outcomes. According to Symes and Humphrey (2010), children with ASD are up to three times more likely to be bullied or rejected by their peers and less likely to receive social support. In the context of social support, Teachers should, therefore, be appropriately trained to successfully include these groups of pupils with ASD in their various classrooms to minimise negative outcomes for these children (McGregor and Campbell, 2001). Furthermore, additional communication must be performed between teachers and parents in dealing with social issues and parenting practices.

The investigation of Agyekum (2018) has determined that Parents with children with ASD have experienced the increment in financial burden because continuous finance needs to be invested for arranging periodic care for these children to ensure their healthy living. This is because the tests involved, as well as the medication provided, are quite expensive. Therefore, the financial and economic responsibilities of parents have played critical role in enhancing the level of mental stress. It has addressed that earnings of parents could have direct impact on social lifestyle of people (McGregor and Campbell, 2001). However, parents having children with ASD have found some increment in caring expenditures on children so as parents have faced problems in attainment of other social needs.

2.9 Gaps in the literature

While performing the literature review, different gaps in the literature were encountered. These gaps emerged as a result of unnecessary, inappropriate data in many journals and articles regarding different strategies that could be adopted for reducing levels of stress among parents with children with ASD. The literature lacks in-depth information about the impact of parents’ burden of caring for their children with ASD on their social and emotional health. In the present context, some articles do not appear to be reliable because some barriers have been encountered while implementing coping strategies for easing the responsibilities of parents with children with ASD to ensure better social and personal lives for them. The review has provided appropriate information about different therapies, counselling sessions and government services that could be used by parents with children with ASD. Parents have therefore struggled to manage negative experiences while performing different kinds of caring activities for children with ASD. These gaps in the literature indicate that the present study needs to offer further exploration so that a range of data can be examined in an appropriate manner.

2.10 Conceptual Framework

2.10 Summary

The chapter reveals the concepts regarding ASD and the parents having children with Autism Spectrum Disorder. The factors which are causing ASD and raising the responsibility of parents having children with ASD are informed. The theoretical approaches and models regarding the topic are explored. The impact on parents having children with ASD is identified, as well as the challenges experienced by them are discussed. Lastly, the coping strategies available for parents having children with ASD are also discussed.

CHAPTER 3

3.0 Introduction

This section presents the understandings of the social and emotional health of parents of children with ASD-related problems. This chapter presents an in-depth understanding of the different aspects of ASD in children and its implications on their parents’ social and emotional conditions. Therefore, thematic analysis is performed by researcher to assess in-depth understanding of the subject matter.

Theme 3.1 Children with ASD influence the emotional health of parents

Dababnah et al. (2010) stated that bringing up a child with autism is a challenging task for parents because parents cannot understand the issues faced by their children in an appropriate manner. This condition of parents influences negative impact on emotional health and perception of parents about their daily lifestyle. The increasing number of children with ASD has led to various emotional issues among parents. Children with ASD are facing several sensory issues, and it can also affect the efficiency of children how they smell, hear or see things. Parents have reported several difficulties and can also feel embarrassed when their children demonstrate unusual behaviours in public. This results in emotional pressure and mental stress among parents. In this regards, the study of Tripathi (2015) has focused on examining the relationship between parenting style and parents’ level of stress having Children with Autistic Spectrum Disorder. Therefore, the stress level of parents leads direct impact on the emotional health of parents that are having ASD children. In this regards, researcher has selected 10 Autistic schools and organisation to assess a sample of 320 parents having children with Autism Spectrum Disorder and responses were taken through questionnaires. In assessment of stress level, different levels of Autism in children have been considered by author such as mid/moderate level and severe level of autism. For assessing the in-depth understanding, two categories of Autism Spectrum Disorder have been recognised i.e. Pre-adolescence (Lower than11 yrs) and Adolescence (11 yrs or above). The assessment of level of stress was performed on two scales such as 59-94 (Risk Range) and Above 94 (Clinical Range). By using different variables, responses of participants have categorised in below mentioned table:

As per the above findings, the study of Tripathi (2015) concluded that majority or 81% of parents with children with ASB were in the clinical range of stress, that determines the emotional condition of parents is not appropriate due to increased parenting activities for ASD children. Furthermore investigation was found that parents whose children were having severe ASD reported more stress level as compared to the parents whose children were having low/moderate level of ASD because parents have to manage their daily life activities and care practices of their children as per their level of autism (Tripathi, 2015). There were three types of parenting style considered i.e. Authoritative, Authoritarian and Permissive to determine the mental condition of parents. Therefore, majority of parents considered Authoritarian parenting style in dealing with children with severe form of ASD. Further analysis of data disclosed high level of stress among parents with Adolescent children as compared to Pre- Adolescent children. Overall, stress level plays critical in influencing the emotional health of an individual. In addition to that, Zwaigenbaum et al. (2015) stated that parents of children with autism have sometimes described feeling of overwhelmed, guilty, confused, angry or depressed. All of these variables have emerged as important drivers of negative emotional health. In this regard, frustration has emerged as a common emotion. Parents of children with ASD feel frustrated when their child behaves clumsily, in an unresponsive manner, angrily or with disregard. Levels of frustration are also raised when other people do not understand the mental condition of parents and the implications of ASD on the behaviour of children. Other people, therefore, judge both the child and the parent unfairly, and unfair treatment of parents of children with ASD has a negative impact on emotional health because these individuals do not receive appropriate support from other citizens. Parents have often been reported as feeling anxious, not only regarding their current scenarios but also about the future of their children. Anxiety among parents has therefore emerged as an important aspect of negative emotional health. ‘Autism Speaks’ published a report on A PARENT’S GUIDE TO AUTISM and determined some key elements that influence the emotional health of parents with ASD children. This report disclosed that parents hurt emotionally when their other or young children may not understand the problems of brother or sister with ASD and they may have feelings of jealousy and resentment because parents cannot manage their caring activities with all children in equal manner. The unequal treatment among children has enhanced the feeling of anger. Furthermore, other siblings of children with ASD may feel embarrassment with friends or in community. All these factors lead negative impact on the environment of family, and it adversely may affect the emotional health of parents. However, the study of Murphy et al. (2006) has determined the role of the information and education needs of parents associated with Children with Autistic Spectrum Disorders (ASD). In this regards, researcher focused on six different focus groups in which 27 mothers and 11 fathers participated. This assessment found that majority participants have struggled to have appropriate information about their child’s past and current needs along with future needs. Many participants stated that they have dealt with various professionals and service providers at the same time which often enhanced the stress level (Murphy et al., 2006). It is also possible that too much negative information could seem as an important cause of further stress and anxiety during the diagnostic process. Therefore, the lack of appropriate information about the problems of ASD children creates several difficulties while dealing with their needs so as the emotional conditions of parents having children with ASD are not good because they are always thinking about treatment and caring practices for children.

Kuo and Liu (2018) argued that guilty feelings which emerge when parents of children with ASD wrongly blame themselves for the particular disorder suffered by their children. As a result, parents can lose their temper because they feel that they are not doing the right things for their children. A feeling of guilt is identified as an important driver of negative emotional health.

Theme 3.2 Children with ASD encourages social health issues among parents

Neff and Faso (2015) have determined that the social life of an individual plays a critical role in their personal and professional development, incorporating the involvement of people with their friends and family members, as well as social activities. Further studies have identified that having a disabled child affects parents’ relationships with their family members and friends, and the social and work lives of families. The quality of life of these families is discussed in terms of financial aspects, health and the support of family members, family relations, values and occupations, as well as the individual support dimensions of developmental disabilities. With reference to the above argument, the study of Dillenburger et al. (2010) has acquired professional and parental views about living with children diagnosed with autistic spectrum disorder. In this regards, an internet-based survey has carried out through autism organisations worldwide in which investigator has reported 552 responses.

According to responses of parents and professionals, the majority of participants addressed that deficits in children’s social and communication skills, lack of self-help skills along with sleeplessness would be termed as important cause of distress in the social life of parents. In regards, the above able determines the proportion of different factors that could influence the deficit in child’s behaviours (Dillenburger et al., 2010). In addition to that below mentioned table determines the impact of ASD on families in which investigator found that majority of parents and professionals accepted that having a child with autism spectrum restricted the family’s ability in order to manage wide range of plan and activities to pursue recreational and leisure interests, social and community interests, and visiting other places in holidays or family get-together. As per the below-mentioned table, professionals were slightly more worried about different kinds of restrictions on family during social life.

Furthermore, this investigation found that 80% of parents (who are involved in employment in past) stated that their commitment to their child with ASD hampered their efficiency at the workplace and their availability during the full-time employment. Therefore, it found that 56% of the parents currently were unemployed. In the below-mentioned table, most of the parents and professionals accepted that having a child diagnosed with ASD restricted parental activities along with the professional life of parents (Dillenburger et al., 2010). In addition to that both professionals and parents faced some problems in dealing with social life and community involvement practices. Furthermore, responses of participants in below mentioned table:

Therefore, it can be stated that parents having children with ASD are facing several problems with communal engagement practices and social life. This is because parents would find very less time to pursue recreational and community engagement practices. It leads negative impact on social health of parents. As reported by Nelson and Valakh (2015), individuals have different social needs – some individuals want to manage their leisure activities with family members and friends on a regular basis. Furthermore, people have always tried to become an important element of different social events. However, parents of children with ASD face several issues when managing different activities for events in their social lives. Parents of children with ASD always try to avoid certain kinds of social events because they do not get spare time for social activities and can also feel uncomfortable when their children misbehave (Marsack and Perry, 2018). Fear in parents plays a critical role in the avoidance of a wide range of social events, meaning that parents could attract feelings of negligence in relation to their social activities as they are not able to be involved in social events on a regular basis. These activities have been identified as an important cause of social dissatisfaction among parents as a result of the non-fulfilment of social needs.

Theme 3.3 Children with ASD enhanced the economic burden of the family that would lead negative impact on emotional and social health of parents

The investigation of Lavelle et al. (2014) has focused on determining associations between autism spectrum disorder (ASD) diagnoses and service use, caregiver time, and cost outcomes. All these factors are playing critical role to influence financial or economic burden on families along with social and emotional health of parents. In this context, researcher considered the national data related to Medical Expenditure Panel Survey to estimate the annual utilisation and costs for health care, special schooling, wide range of ASD-related therapy, as well as caregiver time in children aged 3 to 17 years of parents with or without having ASD children. The analysis of different variables such as household income, age, health care expenditure has found that Children with parent-reported ASD had found higher level of health care expenditure because parents due to some extra visits of health care units (Lavelle et al., 2014). This investigation has found a greater proportion of children in the ASD group that used special educational services and could be termed as important cause of high mental pressure and economic burden of family. The financial burden has emerged as the most critical factor and an important cause of social dissatisfaction. To manage care activities for children with ASD, parents have to manage additional expenditure to meet the medical needs of their children, and other types of care.

CHAPTER 4

4.0 Introduction

In this section, various past studies carried out on the research topic have been thoroughly evaluated and analysed. The main focus of this research was to explore and examine these various past studies and determine the impact of having children with ASD on the social and emotional health of parents. A systematic discussion is carried out with reference to study goals.

4.1 Discussion

In recent years, a new trend has been observed regarding the health of children. The number of children being diagnosed with autism spectrum disorder (ASD) is increasing at a very fast pace. The Centre for Disease Control (CDC) stated in a study that autism affects one in every 59 children in the US alone. This is very alarming because, if the younger generation suffers from autism and other such disorders, their future is in a very dangerous situation. Many scholars and experts have stated that there is a need for the authorities to act immediately and determine a way through which this situation can be controlled and managed. As per the study aim, this investigation has tried to evaluate the impact on the emotional and social health of parents that are having children with ASD. In the field of social studies, the present study has offered a wide range of information about the problems of parents along with children in dealing with a wide range of care practice for ASD children. Therefore, findings of present study offer great support to social workers and medical professional in handling different tasks and others cares practices.

Concept of ASD

In the process of systematic investigation, an understanding of the key terminologies and concepts offers a brief overview of the subject. With reference to aim and objectives of present study, Lee and McGrath (2015) stated that ASD is essentially a neurodevelopmental disorder whereby various environmental and genetic factors can affect the mentality and behaviour of an individual. However, many researchers and experts consider ASD as a developmental disorder, as it involves symptoms such as abnormal communication, ineffective social functioning and repetitive behaviour. The author further stated that that ASD is mainly caused when a child does not grow up in a healthy environment. ASD is fast becoming a very common issue for individuals, especially children. Demurie, Herbert and Dieter (2013) determined that people with ASD faced several difficulties to communicate with others. They are reserved in nature and therefore have equivalent interests. Repetitive behaviour is one of the most common traits among people with ASD. They are unable to function normally in different parts of their lives such as school and work. As per the study of Akagi (2015), it has found that autism is considered a spectrum because a variety of such disorders can be termed as autism. It can be a lifelong disorder, but a person’s life and ability to function can be improved through modern treatments and care services. The evaluation of views of different authors and researcher has determined that ASD among children is influenced by several key drivers that could be linked with either genetic disorders or non-genetic disorders. In the field of social studies, the present investigation has determined different key driver of ASD among children so as social workers and health care professionals can enhance awareness of parents about ASD (Dillenburger et al., 2010). This is because ASD seems a broad concept and appropriate information about the ASD supports parents in different treatment procedures along with strengthening mental condition. In this regards, the study of Tripathi (2015) has found that information plays critical role in dealing with wide range of medical and health care issues. It supports practitioners and users of health care services to handle the wide range of critical aspects and elements in relation to ASD.

Key Challenges faced by parents of children with ASD

In the social studies, the investigator has tried to evaluate the key issues which are faced by parents having children with ASD. In this context, Lovell and Wetherell (2016) argued that parents had less time for themselves as their primary care focus has to be on the well-being and health of their children, which gradually leads to depression and anxiety. The condition arises because ASD is a neurodevelopmental disorder which results in children being unable to perform social actions every day without assistance from their parents. Furthermore, the study of Malow et al. (2012) has determined that individuals affected by ASD produce smaller amounts of melatonin, which is the key hormone regulating proper sleep patterns in humans. This condition results in children with ASD remaining active for a longer time, leading their parents, who are their primary caregivers, to remain alert to meet their needs and care. These findings provide great support to social workers and other health care individual in assessment of different issues parents having children with ASD. However, the investigation of Murphy and Tierney (2006) determined that parents are often exhausted due to lack of proper sleep on a daily basis while caring for their children. This exhaustion creates a negative effect on the mental and physical health of the parents over time. Scholar further stated that children with ASD lack the efficiency to carry out basic social interaction properly, due to which they are often left alone. It has enhanced the responsibilities for the parents to look after their children all the time and provide them with the company so that the children do not feel isolated (Herlihy et al. 2015).This information assists researcher in identification of different strategies and tools through which parents can manage the social isolation of children. Further assessment of secondary data and various themes have disclosed that parents have recorded increment in their stress level because children with ASD are not having effective language and speech comprehension abilities. It has reduced the interaction level with others so as they cannot convey their needs and demands in a proper manner (Da Paz et al., 2017). In this regards, the investigation Lai et al. (2015) has found that the responsibility of being the mediator communicator often falls on the parents because the parent is termed as key caregivers so as parents may feel more stressful in the contemporary lifestyle. The research of Ogourtsova et al. (2019) has paid significant attention to the work-life balance and found that parents with children with ASD experience several challenges in managing work-life balance. This is because parents have to concentrate on caring for their children with ASD, giving them little time to undertake long hours of work. Thus, parents with children with ASD have to make career sacrifices to ensure the proper care and well-being of their children (Kinnear, Link, Ballan and Fischbach, 2016). Jigyel (2014) stated that parents of children with ASD are unable to explain issues with their children. Therefore, parents cannot manage a wide range of social and communal events. In different social studies, it has found that social relations are playing important role in the personal and professional development of an individual. With reference to goals of present study, the investigation of Cachia et al. (2016) has determined that parents are being humiliated for improper actions and behaviours of their children because parents have found criticism for the actions of children with ASD. Parents with children with ASD thus start to blame themselves for having very little control over the behaviour of their children. It also increases the level of depression among parents.

Parenting of parents of children with ASD leads a negative impact on the emotional and social health of parents

The main purpose of the current study was to analyse the impact on parents who have children with ASD with particular attention to their emotional and social health. The analysis of findings of different studies and wide range of secondary has determined that social health of an individual is linked with his relationship with other family members, friends and level of involvement in different social events. In the context of the present study, Montano and Kasprzyk’s (2015) stated that parents of ASD children had faced several issues in their social health. This is because parents felt that social lives are completely destroyed as a reason for the spending of the majority of their time taking care of the child with ASD. They cannot go out because they cannot leave their child alone or with anyone else. Therefore, the social health of parents is thus heavily affected because their child has ASD. Parents further determine that they could go out with their friends and family, attending different social events with a normal child, because their child could be left alone or with someone else. However, the results of Montano and Kasprzyk’s (2015) work and Neff and Faso’s (2015) study are contrasting, meaning experience with a child with ASD has a non-significant impact on the social health of parents. This means that parents who have a child with ASD can still have healthy and active social lives. They can attend different events and go out with their friends and family members. The investigation of Cohrs et al. (2017) further determined that some parents of children with ASD do not have to face such issues relating to their social health because they leave their child with someone who is familiar with the child and his/her needs or with a care service provider. In any of these situations, the parents are confident that the child will be well cared for and thus can leave him/her. According to Jigyel (2014), parents have to leave their child alone or with someone whom they can trust to take good care of the child to have an active social life. The investigation of Lindly et al. (2018) has addressed mixed responses from parents. In this regards, parents stated that if they become sick, they can find someone to take care of their normal children, but they are not so confident about caring activities for their children with ASD. This is because parents do not think that their child can adjust with any other person and it would be complicated for them to find a person able to take good care of the child and provide him/her with effective health care services. This result is very similar to the findings of Herlihy, Knoch, Vibert and Fein (2015) in which researchers have stated that in a situation when a child with ASD falls sick, then it is very difficult for the parents to find someone to handle different caring activities for him/her. It increases the mental pressure that is adversely affected the social and emotional health of parents. Bonis (2016) stated that the amount of stress that parents of children with ASD undergo is significantly higher, and similar results have obtained in the findings of 132 previous researchers. This means that stress among parents of children with ASD is very high and social workers and medical practitioners that can help in resolving different issues. These parents usually find several difficulties to lead a healthy and comfortable life because they are not getting enough time for their friends and family members. As per the study of Harris and White (2018), it has found that the social life and social health are interrelated terminologies because living with such children and making them comfortable is an ongoing task in which parents would not find any time to lead active social lives. These results are similar to the findings of Ilias, Cornish and Kummar (2018). Therefore, different social and health care practitioners have to consider social life balance of parents in assessment of the impact of ASD children on the social health so as social workers can formulate appropriate strategies and tactics so as parents of children with ASD can manage the appropriate relationship between social life events and caring activities of children.

The investigation van Asselt-Goverts et al. (2015) has addressed that social health of an individual is mainly influenced by the level of involvement in social or community events, time spent on leisure and travelling related activities, conversation with family and friend, and many more. However, if an individual is failed to involve in social events then it could be termed as an important cause of social dissatisfaction. On the contrary, the emotional health of parents of children with ASD also considers an important aspect of parenting process for children with ASD. It is termed as another element that was given much attention to this research. In different studies, autism seems as a disability that stays for whole life, and no perfect cure for this has been found yet. For this reason, having to care for a child with ASD is an emotionally draining task. This is supported in the findings of Vanegas and Davidson (2015). They stated that parents become emotionally drained because they cannot turn to anyone among their friends or family members for help as they also do not know much about dealing with and caring for a child with ASD. This means that the parents are usually alone with very few people with whom they can talk about the issues that they are facing or take advice from. The emotional toll that parents fall under because their child has ASD is very heavy, and it is limiting their ability to lead healthy and comfortable lives. Therefore, this assessment supports social workers in managing the counselling sessions for parents so as parents can deal with different critical tasks and activities based on parental care of ASD children (Benson, 2018). In addition to that it has addressed that handling different aspects of emotional health can be considered as a very critical approach for parents to deal with mentally disabled children. Apart from that, the findings of Vasilopoulou and Nisbet (2016) support the results of the current study. Evaluation of different literature shows that parents with children with ASD have very low standards of emotional health. This means that their emotional conditions are not very good because they are unable to lead healthy and comfortable lives. Although the impact of having to care for children with ASD is limited to a certain extent, it does not allow parents to lead their own lives. In their study, Wong, Mak and Liao (2016) focused on conducting a thorough emotional analysis of parents of children with ASD. They found that such parents are unable to emotionally connect with each other, their children or with any other people. For this reason, it very difficult for parents to trust other people and they cannot manage their social life events. Therefore, other family members are consequently adversely affected. As per the study of Murphy and Tierney (2006), it has found that the parents have felt that children with ASD are often left uncared because their parents are not emotionally available. According to Lai et al. (2015) and Baron-Cohen (2016), children with ASD require the utmost care and attention. However, because the parents are emotionally drained and unavailable so as they are not able to care for their children. These findings have determined that ineffective care of children due to an emotional imbalance among children causes further complications in the disability. All these factors have played critical role in the development of a negative environment when there is further reduction identified in the overall quality of care provided by the parents. Also, parents become demotivated. Dimitrova, Özçalışkan and Adamson (2016) found that depression was a frequent consequence for such parents.

In the context of the present investigation, one of the primary areas affected by parents of children with ASD is their emotional health. This is because an improper mental condition leads negative impact on the emotional health of parents. Kuhlthau, Felice and Hall (2010) therefore suggested that social workers and medical practitioners can offer emotional support to such parents that could enable them to take better care of their children and ensure that they are happy and comfortable. These parents experience a great deal of burden while caring for their children and often believe that, they will not receive any kind of support from other people. All these factors lead negative impact on the emotional health of parents. Role of support groups (medical practitioners, family members, social workers and others) The parents having children with ASD has various opportunities that they can use to provide care without experiencing stress and avoiding the challenges faced in delivering care to their child. As mentioned by Blanche et al. (2015), support group refers to members who deliver an opportunity for individuals to share personal feelings and experiences along with first-hand information and coping strategies regarding any form of treatment or disease. This means that support groups bring together individuals who have gone through similar experiences regarding their health. The parents having children with ASD on using the assistance of support groups are able to develop knowledge through first-hand information regarding the way they can arrange care for their children to gradually make them self-sufficient to execute their daily activities (NHS.uk, 2019). This is effective to lower some burden of care from the parents, making them have time to be spent on executing their personal activities. As argued by Dimitrova et al. (2016), parents with ASD children are to get educated in sign languages. This is because it would lead parents to understand the needs of their children through gestures as well as communicate with them effectively to deliver proper care. The parents having children with Autism are to take assistance or share support from other family members to deliver care to the child. This is because it would help to divide the care burden among members providing the parents to have time for socialisation without ignoring the care of their children (Jigyel, 2014). The parents with ASD children are required to have spousal support to help them reduce their stress and ensure their own well-being. This is because support from the spouse helps to share household responsibilities as well as disciplinary role towards the child for one another without compromising on the quality of care being provided to the child. The parents are required to take support from formal groups which include health professionals, support groups, counselling services and others. The services are effective to allow parents to have knowledge and skills to care for their ASD child in a better way by facing less hindrance (Neff and Faso, 2015). Parents having ASD children while socialising are to directly inform about their child’s condition to others in case the child misbehaves so that others can understand the reason behind such activity. This is going to help the parents avoid unnecessary blame from others, in turn, helping them to interact with others (Jigyel, 2014) freely. As mentioned by Lee and McGrath (2015), support groups provide opportunities for individuals to share their personal feelings and experiences, along with first-hand information and coping strategies regarding any form of treatment or disease. This means that support groups bring together individuals who have gone through similar experiences regarding their health. Parents with children with ASD can, by using the assistance of support groups, develop knowledge through first-hand information regarding ways in which they can arrange care for their children to make them self-sufficient to gradually perform their daily activities. This is effective in reducing some of the burden of care for parents, providing them with some time that they can spend on their personal activities. As argued by Kinnear, Link, Ballan and Fischbach (2016), parents with children with ASD can become educated in sign language, helping them to understand the needs of their children through gestures as well as communicate with them effectively to deliver proper care. Parents with children with autism should take assistance or support from other family members to deliver care to their children to help to divide the care burden, providing the parents with some time for socialisation without ignoring the care of their children. Parents with children with ASD are required to have spousal support to help them reduce their stress and ensure their own well-being (Kronenberg, Verkerk-Tamminga, Goossens, van den Brink and van Achterberg, 2015). This is because support from the spouse helps to share household responsibilities as well as disciplinary roles towards children without compromising on the quality of care provided to the child. Parents should also take support from formal groups, including health professionals, support groups and counselling services. These services are effective enough to enable parents to acquire knowledge and skills to care for their children with ASD in a better way and facing less hindrance. Parents with children with ASD should while socialise, directly inform others about their children’s condition in case a child misbehaves so that others can understand the reason behind such activity (Kuo and Liu, 2018). This will help parents avoid unnecessary blame from others, in turn helping them to interact with others more freely. However, the results obtained by Nelson and Valakh (2015) were similar to the current findings. Prochaska, Redding and Evers (2015) stated in their study that many types of services focus on caring for children with ASD. Parents can leave their children with such service providers in the knowledge that their children are safe, while they can enjoy their social lives. According to Murphy, Sejunaite and Osborne (2016), these services have become very common and are relatively active. The government and care authorities have, therefore also started giving accreditations to these service providers to ensure that the care services are developed according to specific standards that help in taking effective care of these children with ASD.

Prochaska, Redding and Evers (2015) found that modern-day parents are still going to social events, even if their child has ASD. This could mean that parents are not caring enough for their children, but this is not the case. Rather, this shows that parents are becoming more proficient in their work and are providing the best care they can to their children, while still maintaining a social life. Lajonchere, Nancy and Daniel (2012) suggested that service providers and care authorities should create schedules and stick to these. These schedules should consist of detailed information about the various activities that need to be carried out. By following a strict schedule, parents can take much better care of children with ASD and ensure that their varied needs are fulfilled to the greatest possible extent. In addition, parents should keep a close watch on their children to make sure that the children are not facing any kind of issue(s) with their friends or at school. This is an important step because it provides parents with an extensive amount of information about the environments that their children are living in and the relevant issues and challenges they might be experiencing. In addition, Nicholas and Lonnie (2016) suggested that parents should give an appropriate amount of time to children to settle and feel comfortable, helping in taking good care of them.

CHAPTER 5

5.0 Conclusion

To set research goals for this study, the researcher has considered different previous studies. Application of various sources of data collection has enhanced the reliability of the research methodology. In this regard, the present study concludes that consideration of different theories of individual behaviour, lifestyle and perception has provided much support to the researcher in assessing an in-depth understanding of the different aspects of ASD. This is because the different theories and concepts have been identified as very useful for analysing different elements of social and emotional health. This investigation aimed to examine the impact on parents of having children with ASD. In this context, it has focused on different variables, such as the responsibilities of parents with autistic children, challenges of parents, key drivers of stress and others. The researcher has focused on analysing the impact of experience with autistic children on the social health of parents, as well as their emotional health. With reference to study goals, findings of the present study provide great support to social workers and other care practitioners of ASD in assessing the mental condition and problems of parents. In addressing the research objectives, various previous studies have revealed a significant increase in diagnosis of autism among children in recent years (Beversdorf and Consortium, 2016). ASD is a developmental disorder that encourages various health issues and symptoms among children such as abnormal communication and impaired social functioning. This study concludes that parents with children with ASD face a significant increase in roles and responsibilities for their children. This is because this condition results in children remaining active for a longer time. Therefore, parents who are the primary caregivers, have to remain alert to meet their needs and care for them (Murphy, Sejunaite and Osborne, 2016). This investigation concludes that Parents are therefore often exhausted due to lack of proper sleep daily. Further, parents who run their businesses have to give additional time for managing care-related activities for their children. This study has addressed the idea that the exhaustion level is increased over time, that has a negative effect on the mental and physical health of parents. Further investigation has indicated that parents of children with ASD experience several issues relating to appropriately managing work-life balance. This is because parents have to pay extra attention to caring for children with ASD. Such parents are, therefore, unable to give proper time to their children as they often work long hours (Riches et al., 2016). In social studies, it has addressed that information about the parent's mental condition supports social workers in developing various tactics and strategies in coping with social and emotional health of parents.

Sometimes, parents with children with ASD have to make career sacrifices to ensure proper care and commitment to the well-being of their children. Parents of children with ASD need to manage different arrangements and act as care workers, attend social groups and undertake many other activities for the comfort of their children (Ogourtsova et al., 2019). In the context of the present investigation, it was observed while analysing previous studies that children with ASD are unable to manage effective social links and are highly dependent on their parents’ support to fulfil their needs. However, this study has granted significant attention to two basic factors – the social and mental health of parents dealing with children with ASD. On the other hand, some scholars stated that dealing with children with ASD does not have any significant impact on the social health of parents but various previous studies found a correlation between caring for children with ASD and the emotional health of parents. This information indicates that parents face a wide range of emotional health issues as a result of having children with ASD. Corroborating the responses of different participants, Souders et al. (2017) stated that autism is one of the most critical disabilities among children. Supporting the responses of different participants, Teo and Lau (2018) concluded that having to care for a child with ASD can be an emotionally critical task for parents. In this regards, further analysis of secondary has concluded that such parents have become emotionally drained because they are not able to acquire any help from their friends or family in managing different activities related to dealing with and caring for a child with ASD (Teo and Lau, 2018). This information has determined that parents usually feel alone, and there are very few people with whom they can interact and share their feelings. The emotional toll makes a significant impact on parents when their child has ASD, also limiting their chances of leading a comfortable life. Further assessment of various themes in the assessment of a wide range of data, it has addressed that parents must consider different solutions and tactics for managing caring activities for children with ASD and thus managing their emotional health. Parents should establish contact with social workers to assist them in managing care-related activities for children diagnosed with ASD (Beversdorf and Consortium, 2016). By obtaining support from social workers and other professionals who work with children with ASD, parents can manage an appropriate balance between different factors such as work-life balance, community interaction and social skills training. In addition to that consideration of appropriate support from different support groups i.e. family, friends and care workers would help parents in controlling the level of mental stress in caring activities for children with ASD. These factors are very useful for dealing with emotional and social health issues of parents while managing caring activities for children with ASD.

5.1 Recommendations

Parents, as well as other people, can do several things to handle their situations and reduce their pressure or mental stress associated with parenting activities of children with ASD that include consideration of support from other social workers, personal counselling and appropriate balance in social life. One of the best ways to get control of a scenario is for parents to follow a specific routine guide. They should write down every activity or task that they have to perform. This record should consist of all activities, including work-related, family and home activities, related to the child, and any other activities (Da Paz et al., 2017). This record will help them to stay organised and thus pay more attention to their child while maintaining balance in their personal and professional lives. This approach can be very useful for parents and help them to manage their situations with relative ease and comfort. Apart from that, positive thinking and self-talk could be found very beneficial in reducing stress experienced by parents. While caring for a child with ASD, parents are always under a lot of stress, as a result of which they might not be able to function properly and maintain balance in their social and professional life events. Parents must keep their stress levels as low as possible to take better care of their children while ensuring that their own needs and requirements are cared for and fulfilled. For reducing the amounts of stress, parents need to hire professional care services. There are many professional individuals and organisations providing care services for children with ASD. Parents can hire such services to manage a wide range of caring practices and to establish appropriate balance between personal and social life activities (Harris and White, 2018). Therefore, such steps enable parents to enjoy their social lives and develop and maintain relations with other people. These strategies are not only reducing stress levels but also ensuring the safety of children. Furthermore, when their children are in the care of professional service providers, parents can focus more on their work and social lives and emotionally recharge. In addition to that, parents should give appropriate attention to creating a healthy environment for their children that would be more suited to their demands and requirement. It helps children to be safe and be in an environment where they can explore their interests and emotions. It has been observed that children with autism usually want things to be in a specific way, and, if they find anything inappropriate, then they become uncomfortable, and might start throwing tantrums (van Asselt et al., 2015). Parents should make every possible effort to ensure that the environment of their autistic children is most appropriate that will dramatically reduce the amount of stress and challenges which are faced by parents.

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