Coping Strategies for Parents With Autistic Children - Essay Example

? Literature Review: Coping Strategies for Parents with Autistic Children Autism can be considered as a severe developmental disorder (Robins, Fein, Barton, & Green, 2001) which can be disruptive, affecting social relationships, communication, a restriction in activities, and impairments in behaviour, as well as language and imaginative play. Repetitive and ritualistic behaviour is also common in children with autism (Rutter, 2005). The focus of this literature review is on parental coping mechanisms in relation to parenting children with autism. Parenting is challenging, when the care is child is an autistic one, the challenge much more than that of normal growing children. Autism is characterised with impairment in communication, aggressive behaviour and low social functioning (Altiere & Kluge, 2009). Thus parents and families with autistic children need to make significant adjustments in order to cope and function adequately. Gray, 2002 and Schalll 2000 have pointed out that recent studies indicate that parents with autistic children face various difficulties that are related to the caring of the autistic children. Lazarus and Folkman (1984, p. 283) define coping as ‘the process of managing demands (external or internal) that are appraised as taxing or exceeding the resources of the person’. The concept of coping is explored in current theory, and relates to the ways in which parents adapt their lives, expectations, emotional reactions, and other activities to manage the responsibilities of caring for a child with autism. There is some evidence that suggests that there is significantly higher stress involved in parenting autistic children (Blacher & McIntyre, 2006). For example such parents feel that they are locked at home because they fear taking their children out to the public (Lecavalier et al., 2006). However, the type of support that apparent gets from the family member, the society and institution will determine the level of stress or comfort that the parent would undergo in parenting autistic children. Autistic spectrum disorders are increasingly prevalent in society. The Centers for Disease Control (2007) indicate that approximately 1 in 150 births is affected with autism (Fortunato, Sigafoos, & Morsillo-Searls, 2007). In yet another study by American Psychiatric Association (2000)the prevalence of autism range from five cases in every 1000 and up to 60 cases per 10,000 among children under the age of eighteen years. Although autism is a disorder that affects children from different backgrounds, socio-economic status, and cultures (Dyches, Wilder, Sudweeks, Obiakor, & Algozzine, 2004). Most researches have concentrated on a western cultural perspective. It is however crucial to consider race as a separate variable for exploration in research, as it could lead to significantly different results (Dyches et al., 2004). People from different cultures cope with having a child with autism differently according to the parents’ different beliefs and values. Mandell and Novak (2005) argue that the nature of treatment and care received by parents of children with autism is affected by the parents’ spiritual and cultural values, because as noted by Alqahtani (2012) parents make decisions on behalf of their children and such beliefs may influence those decisions. Another research carried out by Resch (2010) indicates that environmental support also affects the way parents relate to their children with autistic characteristics. For instance, a growing number of autistic children would call for in increased allocation of resources towards their care to reduce parental stress (Hall & Graff, 2011). However, this research project took place in Saudi Arabia. The traditional and cultural environment in Saudi Arabia is mostly conservative and follows a firm interpretation of Islamic regulations (Alqahtani, 2012). Moreover, Al-Salehi, Al-Hifthy, and Ghaziuddin (2009) state that there are no accurate statistical data about the prevalence of autism in Saudi Arabia. By 2002, Saudi Arabia had confirmed diagnoses of autism among more than 40, 000 children. Characteristics and Aetiology of Autism There is no identified single cause of autism, and autism may result from a combination of causes. According to Sicile-Kira (2004) some signs of genetic elements and a biological origin may be the leading cause of autism among born children. According to The National Institute of Neurological Disorders and Stroke (2010) points out that autism may have numerous causes that could have an impact on brain systems or development that are crucial for communication and social development. For instance twin and family studies have suggest that if one twin is affected, the other one has up to a 90% chance that will l also be affected. However, studies are still ongoing to prove the relationship of genetic to autism. Evans and Morris (2011) posit that a baby in utero can be infected with a virus but may seem normal at birth; consequently, the usual stresses of life could trigger the inactive virus in the child (The National Institute of Neurological Disorders and Stroke (2010). Furthermore, each child with autism is different and unique, and every child could show different degrees of the symptoms of autism. According to Matson (2009), one of the most significant symptoms of autism is lack of communication skills. Children who are diagnosed with autism exhibit communication impairments that affect both oral and non-verbal abilities. In case verbal communication is present in a child, the child is likely to be diagnosed with high-functioning autism or Asperger’s syndrome (Matson, 2009). Children with autism have difficulties in recognising sights, sounds and colours (Many sights ,sounds ,smells or textures that normal children find normal can be confusing or even painful to children with autism”( Mash & Wolfe,2008 p.301). Another core symptom that affects children with autism is impairment in social skills. Autistic children are likely to lack high or normal levels of social interaction, avoid looking people in the eye, exhibit different body language and facial expressions. Such children rarely interact with peers because of poor communication skills or aggressiveness (Reiche & Noorzai , 2010). Evans and Morris (2011) cite that many children with autism demonstrate strange play or attachment to toys and objects, for example they may exhibit rocking, tapping objects, or hand flapping. They are also more resistant to change, prefer routine, and have difficulty adjusting their emotions (Reiche & Noorzai , 2010). Coping and Stress The concept of parenting of a child with autism as stressful is fundamental to the concept of examining coping mechanisms. The literature suggests that the types of stresses and stressors experienced by parents of children with autism are unique and varied. Gupta and Singhal (2005) state that, despite the fact that many developmental disorders contribute to parental challenges and stress, autism is unique in a number of ways. One of the challenges brought out by Gupta and Singhal (2005) is the diagnostic process. They point out that the disorder has no definitive diagnosis or biological markers in understanding the cause or management styles. Thus, the parental response is more difficult because of the ambiguity and the time it takes to diagnose the condition (Gupta & Singhal, 2005). Another unique feature that makes it challenging for such parents relates to the manifestations of the disorder itself: “because [autism] is characterised by problems of social interaction, such as forming attachments and showing affection, parents of children with autism are often denied some of the fundamental rewards of parenthood” (Gupta & Singhal, 2005, p.63). Therefore, autism is considered to be among some of the most difficult and challenging developmental conditions that families have to adapt and cope with. The existence of higher levels of anxiety and tension in parents of autism than in those with non-autistic children is highly supported. Compared to children suffering other types of developmental delays or disabilities, autistic parents undergo more stress in caring for them (Sander & Morgan, 1997; Hastings & Johnson, 2001; AbbedutoSeltzer, Shattuck, Krauss, Osmond, & Murphy 2004; Eisenhower, Baker, & Blacher, 2005; Blacher & McIntyre, 2006). Smith, Hong, Seltzer, Greenberg, Almeida, & Bishop, (2010), in their research on mothers of adolescents and adults with autism investigated whether the older children caused more stress and the differences between the two. Stressful events are much more prevalent in mothers of adolescents with autism than those with ‘normal’ children (Smith et al., 2010). According to Bilgin et al, 2010, some of the stresses that Turkish mothers undergo through include lack of information about the provision of care, low income leading to financial problems and prejudice or social rejection from the society. Such parents also suffer from grief, pessimism, emotional breakdown, hopelessness. Part of this stress is due to a lack of time spent in leisure activities, which correlates to poor personal wellbeing (Lampinen, Heikkinen, Kauppinen, & Heikkinen 2006). A study carried out by Bilgin et al, among Turkish mothers illustrate, taking parts in such activities as walking, public events and other recreational activities, with family and friends played a crucial role in reducing their level of stress. Time greatly determines how mothers cope with the demands of their child with autism and their own personal needs (Brandon, 2007). Furthermore, maternal emotional support activities might affect how well supportive mechanisms help to reduce stress in mothers of children with autism (Pottie et al, 2009). A great number of authors illustrate that the nature of the manifestation of autism affects levels of parenting stress. Some of the symptoms of the condition that include diverse intellectual abilities, isolated skills, and persistent and pervasive problem behaviours make social integration challenging (Moes, 1995). Children with autism exhibit impairments in emotional expressiveness, which can decrease empathy and compassion between mother and child, and consequently produce higher parental stress (Gupta & Singhal, 2005). There is evidence that because children with autism manifest behavioural, social and cognitive challenges, these are particularly stressful to parents, and that the greater the severity of symptoms in the child, the higher the stress and its effects on the parents (Hastings & Johnson, 2001). This can be compounded by social isolation, which will increase according to the severity of the child’s negative symptoms .According to Gallagher et al 1983, social isolation occurs when the family has restrained the child from public venues and treat the condition as something to be hidden. When this occurs, the parent is unlikely to get the required assistance or moral support the society. In addition, isolation leads to withdrawal symptoms which may later yield to stress or depression among the parents and the child alike. Lack of resources such as residential and respite care or treatment options can also increases parental stress. According to Gray, 2003, a parent that would wish for his or her child to get formal education, interact with others of similar conditions or move freely from one place to another through supportive equipment may undergo stress if such resources are not provided for. In some places like developing countries, government have invested limited resources to such facilities prompting most parents to keep their children at home (Lazarus & Folkman ,1984). Parenting stress can be mediated by a number of factors, as Weiss (2002) shows, the resilience of the parent is an important part of managing stress or even seeing the parenting role as stressful. However, resilience cannot sustain the amount of stress that such a parent may be undergoing, other supportive measures such as peer counselling, support group from other parents with similar problems, government support through the provision of necessary resources are all instrumental towards making the lives of such a parent easier and stress free (Lazarus & Folkman ,1984 ; Twoy et al 2007) . Research shows that parents who have children with intellectual disabilities, such as autism, will often be either depressed or anxious, and will experience depressive symptoms (Hastings et al, 2005; Dunn et al Dunn, 2001; Yirmiya & Shaked, 2005). This seems to be hand in hand with the experience of parenting, a parent who has handled a similar child will not be as stressed as a first time parent with an autistic child. According to Dunn et al, 2001 and Yirmiya & Shaked, 2005, distress and stress of parenting children with such disabilities is strongly linked to social support availability, consistency and reliability. It is also dependent on the severity of the child’s symptoms and behaviours (Gallagher et al., 1983). Parents with autistic children that have formed support groups where they meet and discuss about their challenges openly, share idea s and fight for their children’s rights are at a better position of handling stressful situations compared to those that manage everything on their own (White and Hastings, 2004; Gray and Holden, 1992; Weiss, 2002). Other research however indicates that problem behaviours are positively correlated with anxiety and depression in parents (Blatcher & McInttyre, 2006). Moreover, research also looked at the impact of the burden of care giving, and suggests that caregiver burden is a significant factor in stress, as is the disruption in the quality of sleep ( Brummett et al, 2006; Magana et al, 2007; Meltzer & Mindell, 2006). Olsson and Hwang (2002) carried out a study focused on Antonovsky’s theory of sense of coherence, to determine whether this could help in the understanding of the different ways that parents of children with intellectual disabilities, including autism, psychologically adapt to their parenting role. Olsson and Hwang (2002) argue that a lack of clear or consistent information about the child’s disorder and the available support services could threaten comprehensibility, and that high caring demands of the child could threaten manageability, along with ease of service access and support from a spouse. According to Olsson and Hwang (2002), meaningfulness can be challenged by the parents not having the capacity to pursue personal goals, or engage in personal interests, and that motherhood in particular can be significantly challenged by the mother of the child feeling restricted. Research by Heiman (2002) looked at past and present coping responses and identified significant stressors and negative effects on parents of having a child with autism. In relation to the present coping strategies or responses such as joining support group, accessibility to information on caring for autistic children, financial support, and societal and family support. Heiman (2002, p. 168-169) found that in relation to concerns or problems in rearing a disabled child, there were four categories: “(a) parent-oriented; (b) parents–disabled child oriented; (c) parents–nondisabled child oriented; and (d) parents with no special problems or concerns.” Parent-oriented difficulties included emotional fatigue, physical fatigue, social isolation, and social restrictions, and these are viewed as having no end or potential respite (Heiman, 2002). Financial challenges were also cited by more than three quarters of the sample, relating to the significant financial burden of special needs of the child with the disability (Heiman, 2002). For instance, mothers of such children are forced to stay back at home rather than look for employment that would otherwise create more income. On the same note, nanny services for autistic children is almost double the amount charged for normal growing children. Such children would also need supportive devices such as wheel chairs; they may also require special diet which comes an inflated price. Heiman (2002) also revealed that lack of information about the options available for support, education and care adds to parental stress. Thus, one of the factors that could be considered to help parents cope with the burden of a child with this kind of disability would be improved availability of accurate and appropriate information, as well as availability of support services. Parents feel stressed and concerned about the physical health of their disabled children, and about social isolation, rejection and adjustment (Heiman, 2002). Parents were also concerned about the lack of social or recreational facilities after school for children with autism, and that their social lives and peer interactions were significantly limited (Heiman, 2002). The effects of having a child with autism were not all negative, as over 61% of the sample stated that having autistic children in the family strengthened the relationship between the two parents, while just over twenty per cent stated that new problems arose between them due to the challenges of their parenting role (Heiman, 2002). Coping Strategies Parents use a range of coping mechanisms to adjust to the realities of parenting a child with autism .Gupta and Singhal (2005) indicate that parenting issues and coping mechanisms seem to be focused on adjusting from what is considered a ‘normative’ parenting role towards a non normative one. For example parent with a normal teenage girl or boy would expect him to prepare for school on his or her own, go about to the yards and play or invite friends over for a movie or a party. However a parent with a non normative role will requires being beside the boy or girl or appointing a care taker. Therefore many (or most) aspects of family life, personal life and social life are not normative, thus needing the parents to make permanent adaptations to the responsibility of caring for their child with autism. Such coping mechanisms are personal and psychological, and involve avoidance, focusing on the positive aspects of their parenting role, engaging in supportive behaviours, help-seeking, communication, and advocacy. Previous literature found that coping mechanisms are largely within three categories: personal; support-seeking; and child-focused. Thus, the review identifies that parents do cope, and cope well, in specific ways (Kayfitz et al, 2010; Lee, 2009; Lyons et al, 2010). Moreover, Gray (2006) conducted a qualitative, longitudinal study looking at the ways in which parents of children with autism cope over time, specifically focusing on the time-based dimensions of dealing with this parenting role, and considered the social experiences of families of children with autism, based on an ethnographic approach. The sample was 35 parents within 26 families, in Brisbane in Australia, over a two-year period. The kinds of coping strategies cited by Gray (2006) in the study of coping over time, included: the use of treatment services, such as respite care, private carers, specialist centres, and special schools. It also includes family care by being present to assist in the movement, showing love and care towards the child; social withdrawal; religion; individualism, and using emotional coping strategies, routines, peer support among others. Over time however these changed, and parents used treatment services much less, especially centres for children with autism. According to Gray (2006), this trend has since changed because most parents have the ability to acquire supportive devises that can be used at home as long as they get the right instructions. However, this trend is popular in developed nations compared to developing ones because of the financial constraints among poor parents from developing countries. Support from family members remained a very important coping strategy in the study by Gray (2006). Focusing on emotion remained another important strategy, such as religion, and focusing on the love for the child or the positive dimensions of parenting that child (Gray, 2006). In addition, other factors affect stress and adaptation, or coping, including family size and composition, and even gender (Montes & Halterman, 2006). A bigger family would have more support and thus less stress is experienced by the mother. According to Whiteman & Shivers (2009), boys with autistic symptoms are more demanding compared to girls; however more research to prove the fact is still underway. However, Gray (2006) found that parental coping was different, after years of parenting autistic children, parents continue to show fewer coping strategies than in their initial interviews. Gray (2006) argues that this is a sign that parents begin accepting their child’s condition as normal .The decreasing level of emotional distress felt by parents was a sign that most of their children had improved to the extent where they were considerably easier to live with, even if they had many of the symptoms of autism. Coping approaches changed over time, and the types of strategies used in the follow-up study were different (Gray, 2006). Ekas, Whitman and Shivers (2009) conducted a study measuring spirituality, religiosity, and socio-emotional performance in mothers of children with autism. The analysis of this study showed that improved results were related with spirituality and religious beliefs. Ekas, Whitman and Shivers (2009) , the parents relationship with God also affected their levels of stress. Parents with close religious affiliations illustrated less stress levels compared to those that had distant religious affiliations. Correspondingly, this shows that the wider the beliefs of those individuals in God and religion, it assists them focus on the very important values and things in their lives (Ekas, Whitman & Shivers, 2009). Pottie and Ingram (2008) used a repeated daily measurement design that recorded daily responses from the sample studyin their research, to look at the direct and moderating effects of coping mechanisms on the wellbeing and psychological distress of parents of children with autism. The coping mechanisms included seeking support and positive refraining such as maintaining calm if the child behaved aggressively towards them. This enhanced positive mood, but also that negative coping mechanisms, such as withdrawal and escape, decreased parental positive mood. Lin, Tsai, and Chang (2008), in their qualitative study of parents of young children with autism, found three themes, which included adjusting by self change, for example controlling one’s temper and voice tones, finding treatments for their child with autism, and support. Altiere and Von Kluge (2009) carried out a qualitative study to look at family dynamics and the coping responses and behaviours of parents of children with autism. They looked specifically at the concepts of unity and adaptableness, as being correlated with increased positive coping behaviours, and argue that greater use of coping strategies improved perceptions of family functioning (Altiere & Von Kluge, 2009). They used a family systems approach, and they found that families who defined themselves as enmeshed and involved used more positive coping strategies, and that mothers and fathers, when compared, agreed on all the variables except the difference in perception of the levels of social support available to them, especially from friends and family, with mothers perceiving this as greater than fathers (Alitere & Von Kluge, 2009). Family-centred research by Schall (2000) also shows that the use of positive coping mechanisms characterises a way of family acceptance through showing of love and understanding. Through this they indicated their ability to adapt and to cope with having a child with autism. Furthermore, Heiman (2002) comparatively examined the concept of resilience in parents of children with severe disabilities, including autism. Heiman (2002) undertook interviews with a sample of 32 parents, and looked at past methods of coping, and present methods of coping. According to Heiman, “the questions examined various aspects of family ecology domains: parents’ responses to the child’s diagnosis; patterns of adjustment; family support and services used by parents; and parents’ feelings and future expectations” The findings of Heiman (2002) study give a new light to the topic are particularly interesting. When considering the past experience of parenting a child with a severe disability, the researcher found that parental suspicion seemed to take an earlier lead to diagnosis. Based on their belief, the parents suspicion eventually led to stress because it would turn out to be contrary to their suspicion and non scientific. The lack of professional recognition was cited in half of the parents in this study (Heiman, 2002). The other category, parents’ responses, had four main dimensions in relation to parental responses to the diagnosis of a disability, and the most frequent of these dimensions was a negative emotional response from the parents (Heiman, 2002). According to Heiman (2002) these responses included feelings such as shock, denial, depression, anger, fear, guilt, sorrow, confusion, grief, despair, emotional breakdown, hostility, and self-blame (Heiman, 2002). The next most common dimension was a negative physiological response, including fear, pain, trembling or crying, or even not eating, while the next was the positive emotional reaction (Heiman, 2002). The next category for the past responses was the other family members’ reactions to the diagnosis of the child. The majority of the parents in this study discussed the diagnosis with members of the extended and close family, such as other children, grandparents, sisters, or a brother-in-law, but a few talked to their spouse or only to a friend (Heiman, 2002). The research found that there were three categories of response: positive and reassuring, which related to expressions of love, support and understanding; negative reactions such as sorrow or grief; and practical responses which included offers of help. Heiman (2002) found no statistical correlations between who the parents talked to and the type of disability in the child. Heiman (2002) found that parents shared their thoughts and emotions of their child’s condition with the people that are close to them and the people they trust. This could suggest that close to diagnosis, parental coping mechanisms may be supported by having close friends or family with whom they could talk. This finding therefore explicitly identifies these communication strategies for early on in the parenting journey and forms the basis of the parenting experience with their autistic children. Heiman (2002) indicates that parents used psychological services for themselves, for their disabled child, or for other children, and also used medical and educational services, physiotherapy, art, speech or music therapy and the like, but few had help from support groups in their areas In relation to the future, Heiman (2002) found that parents were concerned, but that they focused very much on ensuring the child’s welfare as they moved into a future life. There is further evidence of positive coping strategies as parents stated that in order to keep a hopeful positive attitude along with a true view and acceptance of the condition, there is a necessity for a strong belief in the child and in the child’s future. They gained their resilience from a holistic perspective and the need to view their child as a part of the family and not as a distinct entity. Furthermore, parents emphasised the idea of accepting the child, who “has the right to live like our other children,” (Heiman, 2002, p. 169), analysing the condition in an objective way, and trying to get practical and effective explanations. Thus, resilience in these parents was related to a number of factors, including the ability to have open discussions with professionals, friends and families; the existence of a positive, supportive and mutually strengthening bond between parents, and the availability and provision of continuous, intensive psychological, educational and therapeutic support for all members of the family (Heiman, 2002). This is added to by the positive parental feelings towards the child with autism, towards their ability to cope, and towards family relationships overall. Although this study has been cited at some length here, it merits such attention as it identifies very important issues around coping mechanisms, and these findings are derived from a robust design which incorporates a qualitative element which is more parent-centered. A number of articles in this review included specific approaches designed to aid parents in their coping. However, Blackledge (2006) looked at the use of Acceptance and Commitment Therapy (ACT) as a means of supporting this coping adaptation. Blackledge (2006) utilised a within subject repeated measures design quantitative study to test the impact of a two day group workshop using ACT, in a sample of twenty parents or guardians of children with autism. Blackledge (2006) provides ample detail of the study design, and used previously tested instruments to measure outcome variables. Blackledge (2006) identifies that there were significant improvements in many of these outcome variables in the test subjects, and was able to conclude that this psychological therapy might help parents to cope with their adaptation to their parenting role of a child with autism. Similarly, Barnett et al. (2003) discussed coping and adaptation, and venture that improving parent and child functioning can be addressed by focusing on parental adaptation. They carried out a critical review of literature on parent and child functioning, and suggest that adaptation is a process “whereby parents are able to sensitively read and respond to their child’s signals in a manner conducive to healthy development” (Barnett, Clements, Kaplan-Estrin, & Fialka 2003, p. 184). Objective of the study: The present study aims to explore the coping strategies used by parents of children with autism, using qualitative research design as a useful method in order to investigate the parent’s subjective experiences of how they cope with the challenge of raising a child with autism. This study took place in Saudi Arabia, which will provide a different perspective to parental coping methods, particularly given the limited literature regarding autism and parental coping methods in Saudi Arabia. Further research is needed, however, to consider optimal approaches to supporting such parents (McConachie et al, 2005; Bilgin & Kucuk, 2010), what the longer term effects on parental and family health are, and how best to design and provide services to meet their needs. References American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text revision). Washington,DC. Gray, D. E. (2002). Ten years on: A longitudinal study of families of children with autism. Journal of Intellectual and Developmental Disability, 27, 215–222. Lecavalier, L., Leone S and Wiltz, J. (2006). The impact of behaviour problems on caregiver stress in young people with autism spectrum disor­ders. Journal of Intellectual Disability Research, 50(3), 172–183. Lin,C.,Tsai.Y & Chang H (2009) Coping mechanisms of parents of children recently diagnosed with autism in Taiwan: a qualitative study. Journal of Clininal Medicine Volume 23, Number 2, May, 2010 Mash, E., Wolfe D. (2008) Abnormal Child Psychology .New York: Cengage Learning Reiche T & Noorzai T (2010). Verbal Communication in Children with Autism .London: GRIN Verlag Schall, C. (2000). Family perspectives on raising a child with autism. Journal of Child and Family Studies, 9, 409–423. Read More