Effects Of Autism On Families - Financial and Psychological Impacts Assessment Answer

School of Education
University of New South Wales
EDST5888 Project
Z5135669
PROJECT TOPIC
EFFECTS OF AUTISM ON FAMILIES

Abstract
The review highlights the effects of Autism Spectrum Disorder (ASD) on families. In this regard, social, financial and psychological impacts have been observed in most of the research work. The researcher has selected peer-reviewed articles using keyword search strategies from Medline, PubMed and EMBASE. The researcher has also developed various inclusive and exclusive criteria to shortlist the most relevant journal articles.
In the research, the strategy that has been followed is Preferred Reporting Items for Systematic Reviews and Meta-Analyses checklist (PRISMA) in order to retrieve the most relevant evidence for the study. Moreover, the researcher has also used Cohens Kappa statistic tool to measure inter-rater reliability. Also, a systematic qualitative review has been conducted to analyse the effects of autism on the family. The findings of the research revealed that having children with ASD have a significant impact on the financial and psychological health on the families.

Contents
TOC o 1-3 h z u Background PAGEREF _Toc7088450 h 5Aim PAGEREF _Toc7088451 h 9Research questions PAGEREF _Toc7088452 h 9Methodology PAGEREF _Toc7088453 h 10-12
Keywords PAGEREF _Toc7088454 h 13Search strategy PAGEREF _Toc7088455 h 13-16
List of databases PAGEREF _Toc7088456 h 16PRISMA PAGEREF _Toc7088457 h 17Cohens Kappa Statistic PAGEREF _Toc7088462 h 18The Data Chart PAGEREF _Toc7088463 h 19-67
Discussion PAGEREF _Toc7088464 h 67-70
Limitations PAGEREF _Toc7088465 h 70-71
Conclusion PAGEREF _Toc7088466 h 71-72
References PAGEREF _Toc7088467 h 73-77

BackgroundAutism Spectrum Disorder (ASD) is a combination of neurodevelopment disorders that have been characterised by diminished social behaviour, impaired verbal and non-verbal interactions, poor eye contact, no facial expressions and reduced body postures in the early age of life of children with ASD (Park et al., 2016). It is a multi-factorial disorder caused by various genetic or non-genetic factors and the interaction of these factors with environmental triggers (Park et al., 2016). It has been recommended for young children to participate in various leisure activities like having a particular hobby, plays, social activities and sports. However, children with ASD like to spend their time in passive play and may become maladaptive (Memari et al., 2015). Many of these children do not like to participate in leisure activities and prefer to be socially isolated. The impaired behavioural and social abilities of children with ASD may restrict opportunities to participate in recreational programs and physical activities, which can ultimately lead to complete inactivity among these children (Memari et al., 2015). Due to reduced inactivity, these children become more vulnerable to obesity and being overweight (Memari et al., 2015). The prevalence rate of ASD has increased in recent years up to a significant number. Because of that, it has become a public concern. Now people are more engaged in research and surveillance of children with ASD. In 1943, the rate of diagnosis of Autism was 4.5 per 10,000 children and had seen a drastic increase up to 110 per 10,000 children till 2009 in all western countries (Adak amp Halder, 2017). According to the report of the Centre for Disease Control and Prevention (CDCP) in the United States, approximately 1 per 68 children (1 per 189 girls and 1 per 42 boys) have been diagnosed with ASD (Adak amp Halder, 2017). The rate of ASD has increased up to 1 in the world including the United States (Davidovitch, Hemo, Manning-Courtney amp Fombonne, 2013). Approximately 1 in every 70 individuals has autism in Australia (Autism Spectrum Australia, 2019). The studies of the prevalence rate of the ASD deficit among non-western countries in the last two decades indicated that the rates of ASD are increasing significantly in the past few years (Adak amp Halder, 2017). In India, nearly 10 million children have been diagnosed with having Autism. In Japan, the rate is 21.1 per 10,000 children in China, 10.3 per 10,000 children and in South Korea the rate is 264 per 10,000 children who are diagnosed with ASD (Adak amp Halder, 2017). The rate of prevalence is highly inconsistent in developing and developed countries and the prevalence of ASD is rising in developed countries significantly (Adak amp Halder, 2017). The prevalence of autism is varied according to the gender of children (Halladay et al., 2015). The disorder is more prevalent among males as compared to females. The ratio of ASD prevalence among male and female is approximately 41 (Halladay et al., 2015). The level of intelligence quotient may determine the differences in the prevalence of ASD among males and females (Halladay et al., 2015). On the contrary, in dizygotic twins, the prevalence of ASD in the second child is almost 0 (Ratajczak, 2011).
The inheritance of genes is considered as predominate causative factor behind the progression of ASD. The autosomal recessive inheritance of HOXAI is one of the various genes that are involved in Autism Disorder Spectrum (ASD). The other genes which can lead to the progression of the deficit include NLGN4, NLGN3, NRXN1, and MeCP2 (Yangngam et al., 2014). Also, the Fragile X gene is associated with the spectrum of autism (Devitt, Gallagher amp Reilly, 2015). Other factors which can lead to the progression of the disorder include the age of parents, mitochondrial diseases, pregnancy conditions and exposure to environmental factors (Ratajczak, 2011).
Repetition of certain behaviours and unusual behaviours are some of the characteristics of ASD (National Institute of Mental Health, 2015). Children with ASD have overlain focused interests. For example, these children are often engaged in moving objects or moving parts of an object (National Institute of Mental Health, 2015). These children often have lasting interests in some specific domains like details, numbers, or some facts (National Institute of Mental Health, 2015). Feelingsof anxiety and upset are more prevalent among children withASD (Keen, Adams, Simpson, den Houting amp Roberts, 2017). A slight change in the daily routine or change in the stimulating conditions could lead to behavioural changes among these children (Sevin, Rieske amp Matson, 2015). Children with ASD from the onset exhibit negligible or inconsistent eye contact (Madipakkam, Rothkirch, Dziobek amp Sterzer, 2017). They are less attentive and hardly make eye contact with other people (Madipakkam et al., 2017). They respond minimally to their environment.
Children with ASD do not have the habit of sharing their objects or activities with other children. These children show unusual responses towards the distress, anger or affection by others. Children with ASD do not respond to verbal communication or telling other people their names (Madipakkam et al., 2017). These children exhibit inconsistent back and forth conversations. The repetition of words and phrases is widespread among children with ASD, and they also show symptoms of echolalia (Madipakkam et al., 2017). The frequent usage of words and phrases that are odd or have special meaning or out of context is common among children with ASD. Children with ASD have some unobvious facial expressions, gestures and movements that do not match to what they mean. The unusual tone of voice, flat or robot-like sound and sing-song like voices are commoncharacteristics of children with ASD (Madipakkam et al., 2017). Children with ASD encounter problems with understanding the view of others (National Institute of Mental Health, 2015).
Apart from the various impairments in their cognitive functioning, there are particular strengths amongchildren with ASD (Charman et al., 2011). Some children with ASD have above average intelligence (Charman et al., 2011). These children can learn complicated things in detail and have the ability to remember the information for an extended period (Charman et al., 2011). Children with ASD sometimes are stronger auditory and visual learners. These children show excellent performances in the field of music, math, arts and science (National Institute of Mental Health, 2015).
Children with ASD have impaired quality of reciprocal interactions and impaired communication development (Zhen-Huan, Qiao-Ling amp Zhang-Yong, 2016). Some children with autism are severely restricted from doing various activities, stereotyped and have repetitive patterns of behaviours and interests. The life-long social and language impairment decreases their quality of life (Zhen-Huan et al., 2016). Only a few percentages of children with ASD can develop the skills for working independently and live a quality life (Zhen-Huan et al., 2016). These children live their lives as unemployed or underemployed people which lead to an isolated lifestyle (van Heijst amp Geurts, 2015). Children with ASD remain dependent on parents and sometimes on siblings (van Heijst amp Geurts, 2015).
The diagnosis of ASD of a child in the family impacts emotionally the parents, in particular (Girli, 2018). The diagnosis of ASD in children also affects parents psychologically and may sometimes lead to anxiety, fear, stress, mourning and depression (Girli, 2018). Also, it affects the marital status and family relationships of the parents (Girli, 2018). There are positive and negative outcomes on sibling relationships when a child in the family is diagnosed with ASD (Diener, Anderson, Wright amp Dunn, 2015). The negative aspects are intense conflicts between the siblings, teasing, and feeling of isolation by the child with ASD (Diener et al., 2015). This can even result in an adverse impact on the quality of life of the child with ASD (Diener et al., 2015). The positive aspect could be developed by enjoyment shared between the siblings, fun, intimacy, shared activities and the assistance given in learning new things. These can enhance the quality of life of a child with ASD (Diener et al., 2015).
The current study aims to analyse the effects of autism on families and seeks to answer the following four research questions
What is the emotional impact of autism on families
What is the impact of autism on marital status
What is the impact of autism on other siblings
What impact does autism has on the family financial status
MethodologyThe research methodology is an essential element of a study. It is a collection of specific techniques that facilitate collection and analysis of research data effectively. For this given research analysis, the data has been collected from the literature using a systematic review. A systematic review aims to retrieve, appraise and synthesise existing knowledge on a particular topic or subject (Mller amp Myles, 2016). Systematic reviews facilitate useful analysis and summarization of current knowledge for Evidence-Based Practice (EBP) (Yuan amp Hunt, 2009). It provides an essay pathway for the production of the manuscript (Edward, 2014). The systematic reviews have adequate strengths that have been used by the authors to answer a specific in-depth and narrow question with the help of a comprehensive source of information (Yuan amp Hunt, 2009). In healthcare, systematic reviews have been used for research purposes because they address all the aspects of a disease or healthcare complications which include adverse effects, prevalence, etiology, cost-effectiveness, diagnostic, testing, treatment efficacy, prevention, prognosis, impact on families and the patient itself (Yuan amp Hunt, 2009). A systematic qualitative review has been chosen for conducting this study. The strategy that has been followed in the research is Preferred Reporting Items for Systematic Reviews and Meta-Analyses checklist (PRISMA), and it has been ensured that all the evidence collected for the research study adhere to this checklist. PRISMA facilitates complete and transparent reporting of meta-analysis and systematic reviews (Liberati et al., 2009). There are 27 items in the checklist of PRISMA which helps in assessing the authenticity and relevance of the research articles. There are four phases flow diagram of PRISMA that helps in retrieving most of the relevant evidence for the research studies based on systematic reviews and meta-analysis (Liberati et al., 2009).
The first phase is identification in which the total number of records that have been
identified from the database search has been included. In the current study, the total number of articles that were identified from the databases was (200). The second element of the identification phase is additional records that have been identified from other sources. Here, in this study, the sources that have been identified from other sources like google scholar are (20). Screening is the second phase in which the records that have been left after removing the duplicated are indicated (Liberati et al., 2009). In the current study, 90 records remained after the removal of duplicates. Eligibility is the third phase in which full-text articles assessed are indicated. It also contains the number of articles that have been excluded from the study with reason. Here (60) articles have been assessed out of 90 because the context of the rest of 30 articles was different from the context of the given research analysis and (48) articles have been excluded because these articles have not complied with the inclusion criteria.In the fourth phase, the total number of studies that have been included in the research analysis are mentioned. In the current study, the total number of studies that have been included in the research analysis is 12. Different studies from the authentic databasehavebeen collected by the screening of the title and abstract of the articles which fulfilled the inclusion criteria of the research. The inclusion criteria that has been set for the research study is as follows
Only studies that are published in the English language have been included in the study
The studies that are published from 2009 to 2019 are included in the research
The journal articles that are published in PubMed, Medline and EMBASE, have been included in the study.
Both qualitative and quantitative types of studies have been considered. The studies in which the effect of autism on family and siblings has been described in some context are included in the research analysis.
The exclusion criterion that has been followed in the study is based on the comparison of the abstract and title of the articles against inclusion criteria. This has ensured that only the latest data in the context of the effect of ASD on families has been collected. The PRISMA checklist was used to select the most relevant articles so that the research objectives can be achieved.The three databases that were selected for the search of relevant literature included Medline, PubMed, and EMBASE. Boolean operators for finding the most relevant papers were used for the literature search. The various search terms and combinations that have been used in the study are as detailed in Table 1.Table 1
Search terms and Boolean operators
Boolean Operator Combination
AND Autism spectrum disorder and financial impacts
Autism AND Marital status
Parents AND Autism AND financial stress
Autism AND family relation
Autism AND Siblings
Autism AND Emotional impact of family
Autism AND Family relations
Autism AND Siblings AND Inclusion
Siblings Relation AND impact of Autism
Spouse stress AND Autism
Financial impact AND Emotional impact AND Autism
Autism AND Stress
Autism spectrum disorder AND Anxiety
Autism AND Fear
Autism spectrum disorder AND financial Support
Autism AND Social support
Autism spectrum disorder AND divorce
Autism AND dependency
Autism AND Intelligence quotient
Autism spectrum disorder AND stereotyped
OR The financial impact of autism OR emotional impact of autism
Effects of autisms on siblings OR effect of autism on parents
Marital status OR Autism
Autism spectrum disorder OR dependency
Autism OR Support OR Discrimination
NOT Emotional burden NOT Financial burden
Stress among patients NOT Among siblings
Impaired cognitive skills NOT intelligence
Also, OR, NOT Autism AND Emotion impact OR Conflicts among siblings
Autism spectrum disorder OR Autism AND Financial burden
Autism AND Isolation OR Inclusion
Autism AND financial support OR financial burden
Autism spectrum disorder AND Dependency OR Intelligence quotient
Impact of Autism AND Family OR Siblings
Autism impact AND spouse OR Parents OR family
Impact of autism AND Support OR Discrimination
Autism spectrum disorder AND Conflicts AND Stereotyping OR Support
Autism spectrum disorder AND Emotional impacts NOT financial impact
Autism AND Martial status NOT stable
Autism AND Impaired NOT intelligence
Figure 1PRISMA ProcessRecords identified through PubMed, EMBASE and Medline(n 200)
Additional records identified through other sources
(n 20)

Identification
Records after duplicates removed (n 90)

Screening

Records screened
(n 90)
Records excluded (n 30)


Eligibility

Full-text articles assessed for eligibility (n 60)
Full-text articles excluded (n 48)

Included
Studies included
(n 12)

Cohens Kappa StatisticCohens Kappa statistic is used to measure the inter-rater reliability and precision which is given in terms of score to the data items (McHugh, 2012). For the current study, the author and a PhD student independently searched and analyzed the articles. Cohens Kappa statistics were calculated to be 0.68, which substantial agreement among the raters of the study (McHugh, 2012).
The studies that were selected for the research analysis were organised in the form of a table with the following headings source, description, key findings and relevance of the articles. The articles were analysed using the Critical Appraisal Skill Programme (CASP) tool.This has been utilised to ensure that only high-quality papers will be used in the research analysis (Singh, 2013). The CASP tool enables the researcher to assess the articles systematically for their trustworthiness and relevance. This tool facilitates the practical assessment of the reliability of scientific studies and unbiasedness of these studies (Singh, 2013). This helps in analysing the importance of results and application of the results to the general population in the healthcare systems (Singh, 2013). This has been utilised to ensure that only high-quality papers will be used in the research analysis (Singh, 2013). Table 2 depicts each article and its alignment with the research questions. The overall results are explained below and are organised by the research questions.
Table 2
Impacts of autism
Study Emotional Marital Siblings Finances
Vernhet, C., Dellapiazza, F., Blanc, N., Cousson-Glie, F., Miot, S., Roeyers, H., amp Baghdadli, A. (2018). Coping strategies of parents of children with autism spectrum disorder a systematic review.European Child amp Adolescent Psychiatry, 1-12. x Weiss, J. A., amp Lunsky, Y. (2011). The brief family distress scale A measure of the crisis in caregivers of individuals with autism spectrum disorders. Journal of Child and Family Studies,20(4), 521-528. x x The emotional impact of autism on families
The impact of autism on marital status
The impact of autism on other siblings
The impact of autism on the family financial status
Table 3 Summary of results
Article Key findings
Vernhet, C., Dellapiazza, F., Blanc, N., Cousson-Glie, F., Miot, S., Roeyers, H., amp Baghdadli, A. (2018). Coping strategies of parents of children with autism spectrum disorder a systematic review.European Child ampAdolescent Psychiatry, 1-12. In the study, it has been found that the parents with the child having autism encountered more problems of stress and depression as compared to the typical other parents. Behavioural problems of children with ASD and impaired social and communication skills impart stress to parents. The stress among the parents with the child with ASD depends upon the gender, age and personality traits of the parents. It has been found that along with the emotional variables, social activities, daily life activities, family activities, jobs, professional relationships, the relationship between child and parent, financial and physical variables affect the quality of life of parents have of a child with autism. Strategies of more avoidance, seeking less social support, problem-focused interventions help the parents in combating the stress due to the child with ASD.
Weiss, J. A., amp Lunsky, Y. (2011). The brief family distress scale A measure of the crisis in caregivers of individuals with autism spectrum disorders. Journal of Child and Family Studies,20(4), 521-528. The caregiving to children with autism leads to distress and crisis among parents because of impaired communication, poor socialisation and poor behaviour of children with ASD. These factors may lead to a full-blown crisis among parents. It has been found that death, serious illness, the problem with close friends, injuries, changing of residence, lay off from work and break up in steady relationships are certain adverse life events that have been encountered by the parents.
Sibeoni, J., Chambon, L., Pommepuy, N., Rappaport, C., amp Revah-Levy, A. (2017). Psychiatric care of children with autism spectrum disorderWhat do their siblings think about it A qualitative study.Autism, 23(2), 326-337. The siblings of children with autism may encounter emotional, behavioural and relational problems.Communication and relational issues were experienced by the siblings when their brother/sister has impaired social and communication skills. Siblings with autism experienced fear, guilt, shame, social isolation, low parental attention, physical violence and worries about the brothers or sisters. There are various positive aspects of being the elder sibling of a child with autism responsibility, love, empathy and realisation of experiences. Siblings experience distress when their brother/ sister get extra care for autism and lead to lack communication and stigmatisation.
Kamaralzaman, S., Toran, H., Mohamed, S., amp Abdullah, N. B. (2018). The Economic Burden of Families with Autism Spectrum Disorders (ASD) Children in Malaysia.Journal of ICSAR,2(1), 71-77. The rise in the prevalence of autism has increased the burden of the cost of the condition. Non-medical costs occupy the most significant portion of the expenses for families of children with autism. Direct medical cost includes outpatient care, pharmacy and home care. Non-medical costs include special education programs, intervention services, day care, care of adult and residential placement. Both direct and indirect costs lead to financial burden among the patents. It has been revealed that the time and effort that have been required by the families for the treatment plan and care coordination leads to reduced capacities of the family members to earn a living. The poor economic conditions of the families due to the cost of care of children with autism put an emotional burden on the families as well. It has been found that the economic burden is largest between the ages of 13-18years.
Orsmond, G. I., Kuo, H. Y., amp Seltzer, M. M. (2009). Siblings of individuals with an autism spectrum disorder Sibling relationships and wellbeing in adolescence and adulthood.Autism,13(1), 59-80. Developmental differences have occurred in relationships among siblings when the parents are not able to provide care to children with autism. The siblings may encounter closeness and low interactions and consider the brother/sister with autism as a burden. The siblings feel isolated, lonely and experience limited family interactions because of their brother/sister with ASD. The behavioural and communication impairments of the children with autism affect the relationship with siblings throughout adulthood and adolescence. Positively, more shared activities have been observed among the siblings whose younger brother/sister autism. When parental support is given to the siblings, the adult siblings help their brother/sister in coping up with behavioural complications and the children with autism encounter fewer behavioural problems. With parental support, more significant positive effects have been seen in sibling relationships.
Bashir, A., Bashir, U., Lone, A., amp Ahmad, Z. (2014). Challenges faced by families of Autistic Children.International journal of interdisciplinary research and innovations,2(1), 64-68. Parents who have children with autism encounter extreme difficulties in teaching communication and life skills, challenging behaviours, and difficulty protecting their children from danger and in preparing them for future life. Parents with children with autism felt they were denied some of the rewards of parenting and considered their children to be a burden to them. The various stressors that have been identified in the study are scattered intellectual capacities, impaired communication, pervasive behaviours and isolated skills. The parents experienced the feeling of loss, lack of personal control, lack of spousal support and poor professional support. The various stressors act as high-risk factors for the parents and can lead to chronic trauma and stress among the parents. Parents perceive the needs of siblings as secondary and give more time and attention to children with autism. The siblings feel unfair in the family which impacts their family relations negatively. Children with autism impart a financial strain on the parents. The high expenditure on treatment and therapies for children with autism leads to insufficient money for living. Parents of children with autism experience difficulties and dysfunctional relationships which may ultimately lead to the divorce.
Sibeoni, J., Chambon, L., Pommepuy, N., Rappaport, C., amp Revah-Levy, A. (2017). Psychiatric care of children with autism spectrum disorderWhat do their siblings think about it A qualitative study.Autism, 23(2), 326-337. Characteristics of autism, such as impaired social communication along with the behavioural complications like anxiety, aggression and screaming can lead to stress among parents especially in the cases when it is difficult for the parents to manage these symptoms. Parenting stress leads to poor health and wellbeing of the parents, difficulty in the implementation of behavioural interventions and maladaptive practices of parenting. The various stressors that lead to parenting stress include severe symptoms of ASD, impaired cognitive skills, restricted behaviours and repetitive behaviours, externalizing behaviours, problems of internalizing behaviours and adaptive behaviour of children. High levels of social support and active engagement in coping strategies by the mother result in low parenting stress levels. Increased externalizing behaviours, disengagement of mothers in coping strategies, and family dysfunction lead to increased parenting stress among mothers.
Knapp, M., Romeo, R., amp Beecham, J. (2009). The economic cost of autism in the UK.Autism,13(3), 317-336. Autism impacts the ability of social integration, wellbeing, health and quality of life of the individuals.
Children with autism have high needs for institutional facilities, support, and shelter accommodation. Social care, housing, health, education, and other services share a large portion of the cost of caring for children with autism. The high cost is associated with the provision of care and support to the adults. Early intervention in childhood can reduce the cost of support of adults with autism. Raising and providing care to children with autism cause an economic burden to the parents and family of children with autism.
Hartley, S. L., Papp, L. M., Mihaila, I., Bussanich, P. M., Goetz, G., amp Hickey, E. J. (2017). Couple conflict in parents of children with versus without autism Self-reported and observed findings.Journal of child and family studies,26(8), 2152-2165. Autism is a lifelong neurodevelopment disorder in which child-related challenges leads to increased stress among the parents. These stressors affect the dynamic of the family and affect the marital relationship of the parents.
It has been examined that the parents of children with autism have encountered several severe, frequent and unresolved conflicts. It has been reported that these couples are less balanced, engaged and cooperative when compared to the parents who have children without any disability. Conflicts among couples led resulted in poor marital satisfaction. This can consequently lead to divorce and separation among parents who have children with autism. The externalizing behaviours of the children with autism led to increased conflicts among the parents about childcare and parenting, which ultimately led to intense, frequent and unresolved issues. Parents of children with autism have more frequent conflicts compared to parents of children without any disability. It was also observed that some couples who have children with autism showed real affection, cooperation and sensitivity.
Green, L. (2013). The well-being of siblings of individuals with autism.ISRN Neurology,2013, 1-7. A sibling bond is an important long-lasting relationship which is very important in the life of an individual. Autism contributed towards the development of a unique environmental stressor in the life of a growing sibling. An individual who has an elder brother/sister with autism is more vulnerable to developmental problems compared to the general population. The various characteristics of children with autism like self- injurious behaviour, social reciprocity, lack of emotional reciprocity developmental disorders and inflexible adherence can be challenging to handle for the siblings and other family members. It has been found that the siblings who have brother/sister with autism may experience the problem of internalising and externalizing behaviours, impaired social and behavioural skills, guilt, stigma, distress and hassles.
Kinnear, S. H., Link, B. G., Ballan, M. S., amp Fischbach, R. L. (2016). Understanding the experience of stigma for parents of children with autism spectrum disorder and the role stigma plays in families lives.Journal of Autism and Developmental Disorders,46(3), 942-953. Parents of children with autism experience social exclusion and shame because of ASD of their children. It has been examined that the behaviour of others such as stereotyping and feeling of rejection leads to exclusion and isolation of the parents from social groups and friends. The belief of people that parenting style can cause autism among children is again a contributing factor for stigma among parents. Some people believe that children with autism cannot hold a job, cannot get married and cannot live independently, also lead to stigma among parents. Because of feelings of the stigma, the parents isolate themselves from their family and friends. The autistic behaviour of children also creates difficulties in raising these children and providing care to them. Also, due to isolation from family and friends, exclusion, rejection and increased needs of the children with autism, the parents need to cut down their work hours as well.
Lavelle, T. A., Weinstein, M. C., Newhouse, J. P., Munir, K., Kuhlthau, K. A., amp Prosser, L. A. (2014). Economic burden of childhood autism spectrum disorders.Pediatrics,133(3), e520-e529. Children with autism have higher care needs compared to children without any disability. Visits to healthcare institutes and prescribed drugs constitute a significant part of the healthcare needs of the children with autism. They also may require specialised schools, which also impacts the economic burden on the parents. Parents require more time for caregiving and need to spend more money on children with autism when compared to the control groups of parents having children without any disability.
McHale, S. M., Updegraff, K. A., amp Feinberg, M. E. (2016). Siblings of youth with autism spectrum disorders Theoretical perspectives on sibling relationships and individual adjustment.Journal of autism and developmental disorders,46(2), 589-602. Sibling relationships are significant for the adjustment and individual development. Sibling relationships have a positive impact on helping, caregiving, teaching, support, warmth, advising, playing and sharing on children with autism. Siblings can affect the development of each other by reinforcing risk behaviours and rule breaking. A feeling of rivalry can be developed among the siblings because of the care and preference given to children with autism in the family. However, the inborn drive can motivate the youth for treating their brother/sister as an emotional security source
DiscussionAutism Spectrum Disorder (ASD) is a neuro-developmental disorder which is characterised by impaired communication, social engagement and behavioural problems among children with ASD (Memari et al., 2015). Children who are diagnosed with ASD face problems in maintaining peer relationships and daily activities like play, hobbies and sports (Memari et al., 2015). The care given to children with ASD is a challenging task for the parents (Memari et al., 2015). Families with children with ASD may encounter several challenges in their life because of disruptive anti-social behaviour of the children (Bashir, Bashir, Lone amp Ahmad, 2014). The challenging task parents of children with ASD have to do to help them include, teaching communication, preparation of the children for adult life, development of essential life skills, and protecting children from various dangers. Predominantly, these are the significant challenges that are encountered by the parents during caregiving children with ASD (Bashir et al., 2014). There are various impacts of ASD on families. The families of children with ASD may encounter problems with the financial burden, stigma, family conflicts, marital conflicts, emotional impacts and others (Vernhet et al., 2018). The problems of stress and depression are widespread among parents who have children with ASD. The level of stress among the parents varies according to the personality traits, parenting style, gender and age of the parents. The variables that get hampered in the life of parents of children with autism include social activities, emotional variables, job, the relationship between families and professional relationships. Because of the compromise of these variables, the quality of life of parents of children with ASD decreases (Vernhet et al., 2018). The parents in the studies analyzed here used various coping strategies in order to deal with the challenges that they encountered in caring for their children with ASD (Vernhet et al., 2018). Various emotional impacts of autism on the parents may hamper their quality of life. The various stressors which are associated with autism includes a feeling of loss, depression, reduction in opportunities for family vacations, lack of social support, exclusion, isolation, sacrifice in personal and professionals life, conflicts and challenges in the caregiving process (Nealy, OHare, Powers, amp Swick, 2012). All these stressors lead to decreased quality of life of the parents having children with ASD (Nealy et al., 2012). The diagnosis of ASD in a child could cause confusion, denial, sadness stigma and guilt among parents due to the lifelong depressive condition of their children (Nealy et al., 2012). Parents of children with ASD have experienced various adverse events. These events include acute illness, death, change of residence and breakups in steady relations, lay off from work and injuries (Weiss amp Lunsky, 2011). These events lead to threat and mental health complications among those parents who are engaged in providing care to their children with ASD (Weiss ampLunsky, 2011). Parents of children with ASD may encounter couple conflicts which can hamper the marital status of the parents (Gosztya, 2015).
The diagnosis of ASD among children can decrease marriage satisfaction among parents which could lead to loss of control and poor management of marital relationship (Gosztya, 2015). The parents whose child has been diagnosed with ASD experience less support from spouse and may encounter conflicts while addressing the specific needs of the child (Gosztya, 2015). The stress encountered by the parents of children with ASD can affect the family dynamics and the marital relationship of the parents (Hartley et al., 2017). The frequent unresolved conflicts can be experienced by the couple which results in a less committed and cooperative relationship and decreased balance in the marital status. The poor martial satisfaction among the parents leads to lack of marital adjustments which consequently results in divorce or separation of the parents (Hartley et al., 2017). The sibling relationships are considered as lifelong relations that play a significant role in the development of an individual (Beyer, 2009). It helps in the development of feelings, thoughts and emotions among the people. Positive sibling relationships are significant for the development of social skills and self-worth among individuals (Beyer, 2009).
The diagnosis of ASD also hurts the siblings who have a brother/sister diagnosed with
ASD (Beyer, 2009). It is a daunting task for the siblings to form a sibling relationship with the brother/sister having ASD (Beyer, 2009). The various characteristics of a child with ASD such as impaired communication skills, cognitive limitations and lack of social and behavioural skills can create challenges in the development of a positive sibling relationship (Beyer, 2009). The troubling behaviours of children with ASD like aggression, anxiety, lack of reciprocity leads to negative sibling relationships (Beyer, 2009). The diagnosis of ASD can lead to developmental differences among siblings relationships when the parents fail to provide relevant education to the siblings without ASD and adequate care and protection to a child with ASD (Orsmond, Kuoamp Seltzer, 2009). The siblings can encounter the feeling of less closeness and weak interaction, and they can consider their brother/sister with ASD as a burden (Orsmond et al., 2009). The feeling of isolation, limited family interactions and loneliness can be encountered by the siblings when parents are given preferences to their children with ASD (Orsmond et al., 2009). However, there are several positive impacts of having siblings when a child has ASD (Orsmond et al., 2009). Parental support could result in addressing a child with ASD communication deficits and behavioural problems (Orsmond et al., 2009). There are various economic impacts of the diagnosis of ASD in a family as well. The medical and non-medical cost required for caregiving to a child with ASD occupies a large proportion of the income of the family (Kamaralzaman, Toran, Mohamed amp Abdullah, 2018). The outpatient care, home care and pharmacy expenses are the major sections of the medical cost that is required to provide care to children with ASD (Kamaralzaman et al., 2018). The non-medical cost includes specific education programs, care of adult, functional needs and residential placements (Kamaralzaman et al., 2018). The medical and non-medical cost of care of children with autism imparts the financial burden on the parents and family members of children with ASD (Kamaralzamanet al., 2018).
LimitationsThere are certain limitations of the study that has been conducted for analyzing the effects of autism on the family. The study is not found to be strong evidence for the positive impacts of autism on sibling relations which requires further research. The time constraints for the research analysis have made this challenging to research details. This has limited the researcher to have a piece of stronger evidence for analysing the effect of autism on the families in a broader perspective. A more rigorous study is required to be done in order to make it an extreme level of evidence for further research.
ConclusionIt has been concluded that ASD is characterized by diminished social behavior, verbal and non-verbal interactions. The children with autism show unusual responses towards the distress, anger or affection by others. It has been examined that children with ASD sometimes are strong auditory and visual learners. These children may show excellent performances in the field of music, math, arts and science. However, the children with autism encounter problems in learning basic life skills, social interactions, education and further development. It has been found that the diagnosis of ASD of a child in the family imparts emotional stress among parents. It becomes challenging for parents to raise their child with autism. The poor cognitive, communication and social skills resulted in less competence among children with autism. The parents may encounter the complication of severe stress and depression during parenting of children with autism. Various stressors which lead to distress and depression among parents include severe symptoms of ASD, restricted behaviours, impaired cognitive skills, externalizing behaviours, repetitive behaviours, problems of internalizing behaviours and adaptive behaviour of children. It has been found that the level of distress depends on the characteristics of parents such as their gender, age, personality and attitude towards the complication of their child. The parents encounter problems in teaching their children with autism the necessary social activities, daily life activities, and communication skills. In addition to the emotional stress, the parents of children with autism may encounter financial problems. It has been found that cost of raising the children with autism may be higher when compared to the cost of raising normal children. The parents of children with autism are required to do comparatively more expenditure on medical and non-medical costs. The children with autism require specialized institutional facilities, support services, education, medical facilities and shelter accommodation. It has been examined that social care, education, housing, health, a large portion of the cost of caring for children with autism. Also, the cost has been increased during the adulthood of children with autism.
Apart from the emotional and financial stresses, autism can impact the marital status of the parents. It has been examined that autism negatively impacts the dynamic of the family and affect the marital relationship of the parents. The caregiving to children with autism may raise some unresolved conflicts which leads to less cooperation, balance and engagement among couples and consequently can lead to separation or divorce of couples having children with autism. Also, it has been observed that autism impacts sibling relationships significantly. The siblings of children with autism may encounter relational, emotional and behavioral problems. Having brother or sister with autism can result in guilt, fear, violence or stigma among siblings which can lead to social isolation among them. If the appropriate coping strategies and support services would be adopted by the parents, the caregiving to the children with autism can become easy for the parents. The support services for children with autism can help the parents of children with autism to provide adequate care. The parents are required to have a positive attitude towards their child with autism which in turn can alleviate the stress and depression among parents. The marital complications can be offset by mutual understanding and supporting each other. The feeling of love, warmth, empathy and realization of responsibility can result in positive sibling relationship which in turn can lead to better outcomes of learning skills and cognitive function among children with autism. This can also address the issue of rivalry and conflicts among children with autism and their siblings.
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