The Impact of Autism Spectrum Disorder on Caregivers - Literature review Example

Autism Spectrum Disorder- ASD 0 Autism Spectrum Disorder 1 Literature Review As a developmental problem, individuals suffering from Autism Spectrum Disorder (ASD) tend to exhibit behavioral challenges that range from inability to interact normally to repetitive behavior patterns (American Psychiatric Association, 2013). In recent years, cases of ASD diagnoses have been on the rise; however, as the prevalence of ASD increases in the society, scientific evidence still lacks with regard to effective therapy for the various abnormalities associated with ASD. The reason advanced in the related literature is that ASD presents itself in wide variations (Stuart & McGrew, 2008). In essence, early intervention is critical in terms of reducing the severity of autistic behaviors. Among the intervention techniques in the cited literature include, for instance, ASD-specific education programs and providing support in the transition stages of a child such as from preschool to school (Andersson et al., 2014). On the other hand, ASD does not affect the only the individuals the condition, but also significant others who provide care, particularly parents. While there is cited literature regarding ASD, signs and symptoms, impact and treatment, related literature still lacks regarding the psychotherapy needs of the caregivers who deal with individuals suffering from ASD. 1.1.1 The impact of ASD on caregivers While the related literature highlights on some of the challenges that caregivers involved with children suffering from ASD go through, a little attention is given on how they can address their psychotherapy needs. Dealing with a child who has ASD is often considered stressful for the caregiver or the parent for that matter. This is because, the demands or burden placed upon the caregiver is enormous, and this sometimes can cause parental stress and to extreme levels, depression (Cadman et al., 2012; Lin, 2011). The demand of providing care for individuals suffering from ASD can also affect families due to the pressure of dealing with a special child. In studies conducted regarding the impact of children with special needs on the family, it is evident that parents of children requiring special attention are more depressed compared to parents with normal children. In most cases, mothers of autistic children suffering from autism are at higher risk of becoming depressed due to the pressures of handling a child with special needs. In a study that associated parental stress with ASD’s, it was found that the parents who had high levels of stress had recently sought ought special services for their autistic children (Allison et al., 2012). In many occasion, the parents of children suffering from ASD often experience psychological disturbances due to the behavioural challenges exhibited by their children. On the same note, psychological disturbance for the parents not only emanates from the behaviour defects exhibited by the child with autism, but also the financial challenges of taking care of an autistic child. Similarly, the parents of autistic children are not only affected by their behavioral challenges, they also deal with the financial constraints related to managing the wellbeing of autistic children. On the other hand, the cited literature, for instance, has focused more on the symptoms of ASD rather than how to improve the lives of both autistic children and their parent (Chiang & Wineman, 2014). In essence, a focus on how quality of life is affected by ASD helps to understand the desires of autistic persons and their relations to ensure the establishment of adequate services and support. In most situations, families with children suffering from ASD often put to hold their quality of life to take care of their autistic child. As such, they are less likely to interact with the outside world, and some even quit their jobs to take care of their autistic child (Chiang & Wineman, 2014). ASD tends to leave parents concerned about their adolescent children’s learning in the school environment and how they cope with other normal children. As such, there is a need for the related literature to focus on how caregivers deal with adolescents suffering from ASD (Chandler & Dahlquist, 2010). This is an important developmental stage when individuals try to discover themselves. The pressure of dealing with an adolescent is often stressful even for parents with the normal children (Baumrind, 1991). However, additional study is necessary to understand the psychological needs of caregivers dealing with adolescents suffering from ASD. The special needs of adolescents are not similar to that of children. As such, more information on how to deal with adolescent suffering from ASD is necessary for developing specific interventions for adolescents or young adults with ASD (Howlin & Moss, 2012; Kring et al., 2008; Levy & Perry, 2011). The parents of autistic children also face challenges because in terms of adapting to new needs for their children. On the same note, the needs for autistic children in their early years are not similar to those of adolescents or young adults with autism. This is an area where information lacks in the cited literature to assist parents deal with the special needs of their teenage children or young adults suffering from ASD. Cited literature regarding the effects of ASD on caregivers or parents concurs that the major obligation of caring for individuals with autism rests with parents or caregivers. This is a difficult situation for parents since they have to balance overseeing the well-being of their autistic child and the rest of the family. This tends to create a crisis in the family particularly when the family members have difficulties coping with the pressure of taking care of an autistic family member. In this regard, additional research is necessary to find ways how families can cope with the pressures of taking care of a member with special needs (Mao, 2012). Related literature on the impact of ASD on caregivers has highlighted on the levels of stress that can occur to parents or caregivers dealing with autistic children. However, studying crisis associated with the management of ASD individuals by caregivers is still necessary. This will play a role in understanding the different crises that manifest in families who are involved with a member suffering from ASD. There are various intervention methods cited in the literature regarding how to mitigate family crisis related to ASD. Such interventions include, for example, social support, reliance on emergency services and preparing for the future care of the child suffering from ASD. On the other end of the spectrum, cited literature concerning ASD also identifies three core elements of ASD that include challenges with regard social interaction, communication skill, and behavioural pattern that tends to be repetitive. Further, research suggests that ASD is also associated with behaviour repertoires that can affect both the nuclear and extended family. Research carried out in the past also noted negative outcomes for families of autistic individuals. However, the same study also reported that some family members do not experience negative outcome because of living with an autistic sibling, for instance. The study; however, noted that mothers of autistic children are susceptible to negative outcomes than other family members that include, for example, fathers (Kuhlthau et al., 2014). Conversely, other researchers have also found positive outcomes associated with family members of autistic individuals. Further, there are parents who admit experiencing positive outcomes because of having an autistic child. However, subsequent research is necessary to identify the factors that contribute to such positive experiences. As pointed out by Macoby (1992), having knowledge of the different experience that family members encounter entails examining, for example how stress is related to a negative outcome such as depression. Further, it is also necessary to examine how support structures meant to deal with ASD can generate positive outcomes. According to Macoby (1992), understanding the different experiences of family members require an examination of the relationship between stress and negative outcomes such as depression. In addition, there is also a need to examine the relationship between support systems or strategies and positive outcomes. On another note, most researchers associate individuals with autism as the main source of stress that tends to affect other family members wellness. However, this direction seems to focus only on the unidirectional relationship between individuals suffering from ASD and their family members or siblings (Smith et al., 2012). On the other hand, it is also possible for such relationships to be bidirectional. In this sense, family members can also have an influence on the family member with ASD. As reiterated by Zhou & Yi (2014), the family system needs to be explored as a unit and identifying family patterns related to interaction is important in understanding individuals with special needs and vice versa. In the nuclear family, for example, there are different subsystems. These include a marital subsystem that involves the interaction between spouses. The parental subsystem, on the other hand, involves interaction between members of a family unit that include, for example, father, mother and children. Further, the subsystem that encompasses the children within the family setting focuses in the interaction between siblings. On the other hand, the subsystem of extended family encompasses the interaction between the nuclear and other relatives. These subsystems play a role in terms of providing insight on bidirectional relationship associated with ASD families. However, research still lacks regarding how these subsystems can help to minimize the psychological challenges faced by ASD families (Zhou &Yi, 2014). 1.1.2 The predictors of distress among parents or caregivers dealing with children suffering from ASD There is extensive literature regarding the predictors of distress among parents or caregivers dealing with children suffering from ASD. Among the indicators in the existing literature concerning parents or caregivers of children suffering from ASD is social isolation. Most parents who deal with children suffering from ASD tend to have a limited social interaction because most of their time is spent looking after the child with autism. On the other hand, the behavior patterns of autistic children are also reported as key indicator of maternal stress. However, while there is a wide range of factors cited in the literature as contributory factors to parental distress, it is still unclear which factor causes more stress to parents or caregivers (Chou et al., 2011). A reason for this anomaly, as cited in related literature, is that previous studies have focused on a few factors considered to cause parental stress and depression. In addition, identifying the behavior patterns associated with autistic children is a challenge because the instrument used in this regard are not specifically designed to measure such behavior patterns. As a result, the instruments used cannot pinpoint a specific behaviour related to ASD that has an adverse effect on a parent’s health or well-being. In this regard, it is necessary for research to rely on measures of core ASD features as a way of identifying the various problems parents of autistic children face (Moy & Magiati, 2012).On another note, while the autistic children’s struggle with social skills causes parental distress, previous studies have failed to investigate how these children express empathy and the resultant effect on parent or caregivers. Further, the literature on ASD also identifies the age of autistic children as a determining factor of parental distress. For instance, previous studies have reported greater maternal stress associated with severe cases of ASD among young children. Conversely, older children’s inability to develop pro-social behaviours, for instance, is considered to be a major contributor to parental stress. On the other hand, different studies associating autistic children’s behavior patterns and stress has mainly focused on the formative years of the autistic child. In this regard, it would be worthwhile to involve a wide range of ages in the subsequent study sample. This would help to understand the variations in parental distress associated with the autistic child’s age (Heidergerken et al., 2005). 1.1.3 Parent/Caregivers mental and physical health Other than the stress associated with bringing up children with ASD, studies have also reported a significant rise in mental health cases among parents or caregivers. Such mental health problems include, for example, depression. In a study conducted by Seth (2011) that assessed depression among mothers of autistic children and those lacking developmental challenges reported an increased depression levels for mothers of autistic children compared to other groups, for example, parents with children suffering from other disabilities. In another study that assessed 54 participants both the male and female gender caregivers of autistic kids showed that 33% of female and 17% of male study contributors assessed were at a risk of sinking into depression. In addition, 6% of mothers and fathers assessed in the study exhibited symptoms of anxiety (Vogan et al., 2014). However, the impact on health associated with the demands of caring for an autistic child is not restricted to psychological disturbances that include, for example, depression or anxiety. The study carried out by Lin (2011), on the other hand, reported that other than depression, parents of children suffering from ASD also demonstrated psychological disturbances such as obsession-compulsion, hostility, paranoia and interpersonal sensitivity. While these results are replicable, they have not been used for other similar settings. However, they address important issues related to the mental wellness of parents with children suffering from ASD (Lin, 2011). Other studies also indicated that mothers of autistic children tend to be more distressed and have a disrupted life compared to mothers who have children with other developmental challenges other than autism. In a survey that involved 219 parents of children suffering from ASD, it was found that approximately 30% of these parents experienced some level of anxiety while about 20% experienced clinically significant levels of depression. In addition, the survey also found that approximately 80% of the participants (parents) in the study reported being overwhelmed by the demands of caring for their autistic children (Mao, 2012). Most parents of children suffering from ASD report their behavioural problems as the major contributing factor to the psychological disturbances that they experience. Similar to stress related to taking care of autistic children, gender differences have also emerged in the ASD literature regarding mental health concerns of the caregivers. According to Cadman et al. (2012), mothers dealing with autistic children and those with children affected by other disabilities are more distressed than fathers. In another study that involved married couples with children who suffered from ASD, it was found that mothers were more susceptible to episodes of anxiety than fathers (Lin, 2011). However, the same study also found that mothers exhibited the same depression levels as their male spouses. Further, the study also noticed that mothers are adversely affected by the condition of their children and spouses than fathers (Lin, 2011). Conversely, Cadman et al. (2012) notes that single parents of autistic children tend to be more distressed than married couples. In a longitudinal study that involved children of different ages, it was found that mothers of autistic children who exhibited depressive symptoms stabilized over time (Baker et al., 2011). However, the study also noted individual variability with regard to how the mothers of autistic coped with the condition of their children. Further, the study also identified dysfunctional behaviours among the autistic as a contributing factor to psychological disturbances such as depression. On the other hand, Chou et al. (2011) noted that t relationship between psychological disturbances such as depression and severity of the condition and between depression and heightened stress levels that manifests on parents of autistic children. Conversely, Jordan and Powell (1996), identified children’s ASD’s behavioural and emotional functioning as the main factors that contributes to the mental challenges evident on parents. On the other end of the spectrum, Bernstein (2011) explains that it is necessary to knowhow personality of the parent contributes towards the distress they experience. Moy and Magiati (2012) noted that maternal emotional distress depended on the mother’s own acceptance of the prevailing situation. This finding indicates that personality traits are vital in understanding how autism can affect a parent’s mental health (Bernstein, 2011). In a another study, it was noted that other than the behavioural challenges that autistic children exhibited, the sleep pattern among family members also indicated the depressive conditions experienced by ASD families (Manion et al., 2013). In the study, parents also complained of fatigue and deteriorated physical health. However, while is unclear how the physical health is impacted, it is possible that the strenuous conditions that parents of autistic children experience tends to affect their mental and physical health respectively. On another note, gender differences are also a concern in the domain of physical health. For instance, researchers report a pronounced deterioration of the physical health of mothers taking care of their autistic children than fathers. Conversely, subsequent studies need to focus on how the physical health is impacted and the relationship between a deteriorated physical health and self-neglect caused by financial constraint and limited time (Vogan et al., 2014). 1.1.4 The demands encountered by parents/caregivers of autistic children In addition to other challenges highlighted in the literature concerning ASD, families of children suffering from ASD also face a myriad of practical demands. Such demands include, for example, financial burden, providing support and educational needs, and health care. Currently, taking care of a child suffering ASD require high levels of financial commitment, which is a challenge for ASD families with low-income status. On the other end of the spectrum, mothers of adolescents suffering from ASD have been found to devote most of their time providing child care with less time to engage in leisure activities (Lee et al., 2008). Further, caring of an autistic child means that other obligations such as work has to be set aside. As such, mothers of autistic children have been found to work fewer hours compared to those taking care of children with other developmental challenges other than autism. Consequently, the lack of work exacerbates the financial situation for ASD families in addition to limiting other resources necessary to ensure wellness of the family member with ASD. With regard to QOL (quality of life), ASD families undergo a myriad of challenges that impact negatively on their lives compared to families with healthy children (Lee et al., 2008). Further, researchers have found that the QOL of maternal caregiver is also affected by their own medical history, for instance. Despite the pressure associated with caring for an autistic child, parents still report being hopeful regarding the growth and development of their autistic children. In essence, meeting the demands of caring for an autistic child require more time, effort and patience. This is necessary to limit the psychological disturbances experienced by parents or caregivers (McMorris et al., 2013). 1.1.5 Coping styles of parents / caregiver of autistic children The cited literature on ASD identifies the various challenges encountered by the parents or caregivers of autistic children. Consequently, these parents need coping strategies that can assist them to overcome some of the challenges that they encounter when caring for an autistic child. The existing literature regarding coping strategies suggests that the parents of autistic children tend to use different coping methods concurrently (Bayat, 2007). Parents tend to seek community services, support from significant others and individual strategies for managing stress. However, Benson & Karlof (2009) noticed that parents of children suffering from ASD also used counterproductive coping strategies that included, for instance, self-blame. Keen et al. (2010) discovered five coping methods that contributed to a more pronounced positive mood. The coping styles include social support, emotional regulation, positive reframing, problem focused and compromise coping. On the other hand, the parent’s ability to derive meaning from their past parenting experience is critical in improving their ability to cope positively. However, it is still not clear how families making meaning of diagnosis concerning ASD (Keen et al., 2010). There is also cited literature that points out the importance of psychological and psychiatric interventions for parents of autistic children. As such, parents of children suffering from ASD can benefit from seeking personal or family therapy. While individual or family therapy is important, ASD families are hindered from accessing mental health services due to the financial commitment related to caring for a family member suffering from ASD. On the other hand, while there is no current research that has compared ASD families to other families with regard to seeking professional help, mothers of children suffering from ASD have been reported to depend on antidepressants and attending therapy compared to their male spouses (Bayat, 2007). 1.1.6 The family members of autistic individuals as a support system The interaction at home between family members is an influencing factor in terms of mutual support they give to one another. However, researchers have failed identify why some siblings experience positive relationships, whereas other experience negative relationships. For example, many individuals who suffer from ASD exhibit behaviours that are expected to impact negatively on their relationships with other members of the same family. While research regarding the effect of having sibling-suffering from ASD in the family is mixed and inconsistent, there are researchers who have reported the negative outcome for typically developing siblings, and others suggest positive outcomes (Stuart & McGrew, 2008). However, other researchers emphasize the need not to overlook the stress of living with a family member suffering from ASD. On the other hand, there are researchers who associate multiple demographic risk factors with the difficulties of typically developing siblings to support a family member with autism, both psychologically and emotionally (Stuart & McGrew, 2008). 1.1.7 Other social support system While individual’s coping mechanisms and attributes that include, for example, hardiness are vital for parents of autistic children, the continuous demands of taking care of a child with special needs also require other support systems. Weiss et al. (2013) identifies accessibility of constant social support as a determining factor of the mood exhibited by parents caring for children with special needs. In essence, social support has been shown in the related literature to decrease psychological distress, feelings of depression and parenting stress. Weiss et al. (2013) also reiterate that family support increases levels of optimism. On the contrary, a recurring parenting stress that is evident among parents of children suffering from ASD emanates from a negative view of support structures. Consequently, parents of autistic children may be reluctant to exploit the resources at their disposal. As noted by Bernstein (2011), most single parents do not have access to social support systems because of the divorce rate evident in ASD families. Further, social support is also affected by self-withdrawal of parents’ of autistic children. This counterproductive strategy might have a negative effect on parents and their autistic children. However, cited literature also recognizes that the challenges of parents of children suffering from ASD are unique compared to those faced by parents of healthy children. Consequently, it is difficult for parents of children suffering from ASD to obtain emotional support and understanding from parents with healthy children. In essence, the support group should specifically involve parents of autistic children (Huang et al., 2005). 1.1.8 The perspective of parents on community mental or psychological health care for autistic kids ASD kids can receive care services within the community mental health system, which are developed to deal with mental challenges through various interventions. There are several intervention methods cited in the literature that are aimed at addressing behavioural and mental problems affecting autistic children. For instance, training the child on skill development and an intervention that involves the parent are being used in clinical settings for children with ASD. However, there is still limited knowledge regarding how the aforementioned interventions are applied in such a clinical setting. In this regard, there is a need for subsequent research that focuses on how to provide care and treatment for childhood disorders particularly in community clinics. This would help to seal the loopholes existing between research-oriented and community-focused practices (Huang et al., 2005). On the other hand, while most of the clinics do not concentrate in treating children suffering from ASD, previous studies indicate that most of the healthcare providers and in particular, therapists have served children suffering from ASD in the community mental health clinics. In addition, previous studies also show that children suffering from ASD can receive outpatient treatment given to other children without ASD within the same clinical setting. However, the care available in community mental health clinics may not be as appropriate compared to the treatment available in a research-oriented environment. Most of the community clinics are not developed to accommodate children experiencing developmental problems and as such, most of the therapists may lack training related to the treatment of ASD. Consequently, most of the therapists in CMH clinics are frustrated due to the lack of expertise necessary to deal with ASD cases. In this regard, there is a need for improvement of the care that is provided for children with ASD in CMH clinics. Such an improvement as suggested by Carbone et al. (2010) requires the establishment of comprehensive approaches by gathering information related to the community context and needs. On the other hand, knowledge of parent perspectives regarding their children and the services in the community is important in improving care of children suffering from ASD. This is because; parents take an active role in the treatment interventions for their autistic children and can help to improve ASD research, funding to enhance treatment, and policy implementation. In addition, parents are also key stakeholders in children’s in health services that caters for their children. Despite the existence of data regarding parent perspectives of community care, no study has explored parent perspectives associated with community mental health system. As such, more information is necessary for the development of a program that can enhance services delivery and the development of evidence-based approach in community mental health settings. Further, parents can also be a link in providing a clinical history of autistic children, who are served in CMH clinics (Huang et al., 2005). 1.1.9 The future of research on ASD While there is extensive research regarding ASD in the area of treatment and the effect on autistic individuals and family members, subsequent study on ASD should focus on the psychotherapy needs of parents or caregivers of autistic individuals. 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