Abstract
Autism is among the very many developmental disorders that affect young children. This neurological disorder causes the child to exhibit abnormalities in social behavior and difficulties in communication due to its adverse effect on the information processing part of the brain. It specifically causes a disconnection as well as disorganizing the nerve cells and their synapses. The research will mainly focus on the effects of autism on a functional family. This is due to the fact that studies conducted indicate that autism prevalence is on the increase. In addition, the condition affects a family socially, financially and even psychologically. The hypothesis of the study is; Children with autism are the main cause of problems in a family set up. The research questions will also be used to help gather the necessary information. Although secondary data will be used, primary data will be extensively used. A literature review will be conducted on fifteen sources which will include books, journals government publications and other credible website materials. A study will be conducted and purposive sampling method will be used to select a sample of sixty families. Data will be mainly collected through observation and through the use of semi structured questionnaires. Data will be analyzed through the use of a frame work approach although the researcher may prefer to analyze the data using computer packages depending with the type and the nature of the data collected.
Introduction
Autism is among many disorders that children suffer from and it interferes with their normal development. This neurological disorder causes the child to exhibit abnormalities in social behavior and difficulties in communication due to its adverse effect on the information processing part of the brain. It specifically causes a disconnection as well as disorganizing the nerve cells and their synapses. However, studies have not been conducted to illustrate how the process takes place (Brown 2005 & Morgan, 1988). The condition can affect children from either birth or generally during infancy and is characterized by inability to form normal relationships as well as normal communication. Consequently, the child becomes isolated and mainly focuses on repetitive and obsessive activities and interests (Autism , 2010).
Children suffering from autism are very different from normal children and therefore they require more specialized care and support because the disorder may present itself in different ways in different children. A child with such a condition affects the family set up greatly and in various ways. To begin with, it is a major shock for any parent to learn that her child has been diagnosed with the problem. Secondly, coping with such a child socially is a big problem especially to parents with no much information concerning the disorder. The disorder may also be treated as a social stigma. The family is also affected financially since there is usually a need to look for specialized treatment. Looking at autism at whichever angle illustrates that the problem affects the family in various ways. Bent on that, this proposal focuses on the effects of a child with autism on a functional family.
Background Information
A child with autism is just like a normal child and has the same feelings displayed by the normal children save the problems caused by the disorder. Nevertheless, the child exists in a world of her/his own and they display abnormal behaviors like hyperactivity, lack of fear of any type of danger, resistance to learning, problems in communication and speech, as well as lack of eye contact ( National Institute of Neurological Disorders and Stroke, 2010). Other medical conditions prevalent in children with autism that further fuel the disorder causing complications include biochemical insufficiency, certain dietary intolerance, gastrointestinal complications, and hypersensitivity associated with certain food consumption. Although some of the autistic children do not speak at all, others speak in a peculiar and flat tone contributing to more problems in communication. All the same, there are some children with autism who are talented in music and in other skills and that explains why early intervention is very helpful and important (Brown, 2005).
Recent developments in the medical field have contributed greatly to improving the outcome of autistic individuals. However, studies indicate that many still end up being dependent on their families and other people in the society. Studies indicate that approximately seventy percent of autistic individuals are unable to live independently. Further studies illustrate that 49% live with their families, 32% live in care facilities, and it is only 3% who are able to live independently. In addition, study conducted illustrated that it is only 6% of autistic individuals who hold fulltime employment. Most of them confess suffering from mental related illnesses and even though they undergo autistic intervention, the problem of social interaction continues to persist among the majority through out their whole life (Brown, 2005).
As much as the real cause of autism is not known, studies indicate that the symptoms of the disorders are usually influenced by genetics or environmental factors. Initially, the prevalence of the disorder was one out of every one hundred and fifty. However, the recent studies from CDC illustrate that out of every ninety one children, one suffers from autism and one in fifty eight boys. Further analysis of the statistics illustrate that one percent of children in United States suffer from Autism. Statistics indicate that an estimated fifty cases of children with autism are reported daily while the number total individuals reported to have autism go up to ten million. Although the problem of autism is found virtually every where in United States, some variance has been reported among different races and states. Centers for Disease Control and Prevention (2009), reported the state of New Jersey, to have the highest number of autism cases than other states. There is also a slight difference among different races since studies illustrate that the prevalence rate is higher among the African Americans (Brown, 2005).
Purpose of the Study
There is a lot of literature describing the symptoms of autism and the prevalence rates of the same. In addition a lot has been done to illustrate how various intervention measures can be used to deal with autistic individuals and children. However, very few studies have been conducted to illustrate how exactly the family is affected by having an autistic child. Bent on that, this study shall seek to study the effects of autistic children on a functional family. For the purpose of this study a family shall be taken to be people living in the same household which may be inclusive of parents or guardians, caretakers other siblings as well as another person who may belong to the household. More specifically, the main aim of the study will be to study the plight of families having autistic children in the psychological financial and the social arena.
Theoretical Background
The study will be guided by the fact that many studies that have been conducted illustrate that there are various effects on the family caused by the presence of autistic children. According to (Evans 2010), families with autistic children suffer a lot psychologically and under go a lot of stress due to various factors associated with the disorder. The stress begins even before the diagnosis has been made because as highlighted earlier, the initially symptoms are also quite disturbing. Stress level increases upon diagnoses especially due to the social stigma associated with the disorder in some communities. In addition, parents get stressed especially due to lack of clarity on the type of care required, treatment options, and generally due to the knowledge of the responsibility a head of taking care of such children. Financial constraints are also a main cause of worry since the intervention strategies call for more finances.
Although there is so much information about autism, there are still in some societies where autism may cause social stigma. In such instances, a mother carries the entire blame especially in less civilized societies. Other siblings may feel embarrassed especially while socializing with other children and since they may not have an alternative, some may end up avoiding social situations that may result to embarrassment. Parents may also feel that they do not want to expose their child to the members of the society and as a result, they may also end up avoiding social events and encouraging people in their homesteads.
Autism causes financial constraints not only due to medical procedures but also due to several other factors. For instance, since the autistic child calls for more attention, at times the mother may end up quitting the job to take care of the child resulting to a reduction in the family’s total income. Additionally, the child may end up contributing to the increase of family expenditure especially when there is need to take the child to care settings. Financial problems affect families a great deal and no one can negate the fact that most divorces occur due to financial problems in the families or due to problems related to the same.
Currently people have very busy and tight schedules and any additional responsibility creates pleasure that does not only result to stress but also conflicts in the family. It is clear that an autistic child requires the support of each and every member of the family. As a result, members of the families stand a chance of being stressed and even depressed. At times due to lack of sensory capabilities, autistic children may end up destroying various important things in a home set up. If not looked at keenly, they can even cause fire which may not only destroy property but also cause great harm to human beings. They therefore end up creating tension and fear in the family set up.
Results from just a few studies reviewed clearly indicate that the effect of autism is multifaceted. It will therefore be important to study the outcome of these effects on different members of the family. For instance it will be important to find out how family members with an autistic child relate with each other. A survey will be most appropriate because it will allow extensive interview to be conducted on specific families that will be sampled.
Definition of Terms
- CDC Centers for Disease Control and Prevention
- ASD Autism Spectrum Disorder
- NIM H The National Institute of Mental Health
- AUTISM A brain devekopment disorder that affects the communication skills of a child.
Review of Relevant Literature
According to the Studies of Autism Society, about 1.5 million Americans live with the effects of the autism spectrum disorder (ASD). The studies indicate that the prevalence of the disorder has increased compared to the prevalence of the past years indicating an increased need for the government to take care of the autistic children. The disorder causes an increased financial strain especially due to the fact that the cost of caring for a single child ranges from 3.5 to 5 million US dollars. The total annual cost for caring for autistic children in United States amounts to almost 90 billion US dollars. That basically illustrates the effect of the disease but various studies have been conducted to illustrate its effects on the family (The National Institute of Mental Health, 2010).
Psychological Effects of Autism on the Family
A study which was conducted by Konstantareas & Springer (1987) demonstrated that families with autistic children are characterized by psychological stress. More specifically, the main purpose of the study was to find out the effect of various symptoms of autism on mothers and fathers of the autistic children. The results of the studies indicated that cognitive impairment and language problem generated a lot of stress and both parents were in agreement that it was the most stressing symptom. The stress was more severe while dealing with younger children but the results of fathers indicated persistent levels of stress even with older children. Nevertheless, even though the parents reported that they were stressed by the symptoms of the autistic children, professionals judged families to be more stressed that they thought.
It is true that all parents with young children experience some level of stress due to increased responsibilities. However, a study conducted by Morgan, Rodrigue, & Geffken (1990) illustrated that parents with children suffering from autism are usually more stressed than parents with normal children and parents with children suffering from down syndrome. Such parents reported problems such as less martial satisfaction, lack of parenting competence, disrupted planning family and care taker burden to mention just a few. Such factors are just but a clear indication of the psychological problems that may emanate from the disorder.
Studies of Brown (2005) records clearly stages which a family with an autistic child undergoes. After diagnoses, the parents go in to a state of shock as they cannot imagine their beloved child living with the impairments associated with autism. The phase is closely followed by negation phase as it becomes difficult for parents to accept the reality. They may then end up becoming desperate after learning the truth that their child is actually suffering from a problem that can not be reversed. Such a situation more often than not leads to depression especially where proper care is not sought and given. Once the parents seek professional advice and start benefiting from it they recover from the depression and end up in a reality phase (Cuxart & Fina). Further studies illustrate that the level and the severity of the stress depends on the psychopathology of the disease. Most parents with autistic children who have been interviewed confess that they initially suffered from worry and confusion but once they sought intervention, their situation improved drastically (Schopler & Mesibov, 1984).
Effects of an Autistic Child on Other Siblings
Studies which have been conducted indicate that an autistic child affects other children in the same family. A study which was conducted by Howlin (1988) to investigate the effects of an autistic child on other siblings in the family indicated that 30% of the children felt neglected while 18% had worries and anxieties and 15% had problems related to toileting and eating. However, similar problems were present in the control experiment and therefore it remained unclear if the problems really resulted from autism. The same studies indicate that in other studies which have been conducted, learning and language problems have been evident in siblings of an autistic child. However, it is also not possible to clearly understand whether the problems were genetically caused. Psychological stress is also a resultant factor as children feel an increased need to be successful so as to cover up for the autistic child and also the need to comfort their parents.
Social Effects of Autism on the Family
An autistic child greatly affects the relationship of the family with neighbors and friends. A study which was conducted indicated that 43% of all the parents interviewed reported that an autistic child greatly affected their social relation because of reduced contacts. This is due to the fact that an autistic child is marked by destructive and interruptive behaviors which make it difficult for parents to attend to social events. In addition, families also complained a lot due to criticism and sentiments from their neighbors and friends and the same injured the social relations. Parents interviewed also complained a lot on the perceived negative attitude the neighbors and friends held towards their children (Schopler & Mesibov, 1984).
Martial Relations
The presence of an autistic child in the family strains the martial relationship especially during the early childhood. Some of the problems that affect martial relationships are inclusive but not limited to tension, quarrels and lack of sexual interests especially on mothers. Results of the twenty three parents who were interviewed indicated that failure to seek help early enough can easily result to divorce. This is due to the fact that among the twenty three parents interviewed, there were six cases of divorce and five of them reported that autism was a major cause of strain. Nevertheless, the author states that it was difficult to make valid conclusion on the fact that divorce was easily caused by autism because the sample was not representative enough and due to the fact that divorce rate was lower compared to the divorce rate in the general population. There is a possibility that having an autistic child may end up strengthening the bond between the two families especially due to the increased need of financial and emotional support (Schopler & Mesibov 1984).
Although everyone in the family is usually affected by the presence of an autistic child mothers are the most concerned since they are usually more attached to their children. In addition, they have more responsibilities than the rest members of the family. On that case, balancing their attention becomes a big problem since autistic children usually demand a lot of attention. As a result, a conflict may arise between them and other members of the family and in some instances such conflicts have led to family breakdown.
Financial Effects of Autistic Child on the Family
According to Endreszl (2008), an autistic child places considerable financial burden to the family especially due to the fact that it becomes impossible for mothers to work due to lack of a substitute care taker. In addition, mothers who preferred to work and look for private residential care for their autistic child ended up spending not only their entire income on the care but also a portion of their husband’s income. Although there are state sponsored programs, interviews conducted illustrated that they were also costly for most families expect for the very rich. However, even parents in the high income brackets had great fears as they were afraid of their financial security especially after retirement due to reduced income. In some instances, parents had to work in shifts since with an autistic child, one adult has to remain at home and take care of the child. For parents in business, the case is no different because they cannot afford to offer total commitment to the business as they are required to spend some extra time with the child (Endreszl, 2008). Further studies illustrate that since most of the autistic children continue to depend on their parents, the same adds to the financial burden since unlike normal children, they cannot be able to work and supplement the family’s income.
Research Question/ Hypothesis
Hypothesis
A child with autism is the main cause of problems in a family set up.
The hypothesis is most appropriate because it will guide the researcher to investigate on different types of problems present in families having a child suffering from autism. In addition, it will also be very helpful since by the end of the research, the researcher would have gathered enough information to help in making conclusions of the overall effects of autism in a family set up.
Research Questions
- Are families having children with autism characterized by divorce or separation?
- What is the main cause of stress in families having children suffering from autism?
- How are effects of having a child with autism manifested in families?
- Does the effect of other children due to having a child with autism affect the functioning of the family?
- What characterizes social relations of a family having a child suffering from autism?
- Do families having children suffering from autism blame their financial strain on the disorder?
- What is the relationship between the child suffering from autism with other family members and other siblings?
- What are the major needs of families having children suffering from autism?
The research questions are meant to guide the researcher throughout the whole process of research. They are also supposed to help the research narrow down to the main focus of the study and prevent him from collecting irrelevant information. Lastly, the questions will be used to help the researcher know whether all the relevant information has been collected. In case need be, some of the questions will be added or eliminated in the process of the research.
Methodology
This study intends investigate on the effect of autism on functional families and more specifically the effect of psychological stress on different members of the family. Although the research will use primary data, secondary data will be used extensively. A lot of publications will be used ranging from books, journals, reports, and credible website articles. Statistics will be derived from CDC reports and the reports from the Autism Society. More emphasis will be laid on results of various studies that have been conducted to investigate the effects of autism on the family. Books have very important information regarding various facts concerning autism. The total number of materials used will equal to fifteen although others may be added if it becomes necessary. The researcher will focus more on the results of similar studies conducted to investigate whether there is any discrepancy in the results. A survey will be conducted to enable the research collect primary data which is equally important as secondary data.
Sampling Techniques
Since the researcher requires specific information, purposive sampling will be used to select the appropriate sample. The sample will include families having autistic children aged eighteen years and below. To make the research as representative as possible the sample will include families from low, middle and high socio economic class. Though most of the families will be American whites, other racial minorities like African Americans, American Indians and Hispanics will be included in the survey. Families that will be chosen will have other siblings other than the autistic child in order to allow the researcher get the relevant information on all the other members of the family.
Sample Size and Sample Composition
The sample size will comprise sixty families which would have been larger were it not for the constraints of time and resources. Twenty families will be chosen from the lower class, twenty from the middle and the rest twenty will be families who are classified as rich according to the United States classification. Since race will not be considered during data analysis, the racial minorities will be included where possible but to a maximum of three from each racial minority group.
Methods of Data Collection
Semi structured questionnaires will be used in data collection and the researcher will fill the questionnaire during the process of interviews. Semi structured interview questions are best suited especially while collecting data on sensitive issues. The study will involve some questions related to sensitive issues such as martial relation and income and expenditure. The questionnaire will have three parts; one part for the parents or the guardians, the other part for the siblings of an autistic child and the last part will be for the researcher to make own observations. Data will be captured in a home set up since it will be necessary for the researcher to make necessary observations. Observation method will be used especially while investigating on the effect of autistic children and other siblings. Studies of Denzin & Lincoln (2000) affirm that observation method is very essential while collecting information on people’s behaviors and for this study, the method will be very helpful since the researcher will collect information on relationship between the child suffering from autism and the rest members of the family
Methods of Data Analysis
Although there are many methods that can be used in analyzing qualitative data, this research will use a frame work approach though the researcher may change later depending with the nature of the data that will be collected. The first step will involve familiarization of the data. The researcher will go through all the data collected in order to note key issues present in the data. The researcher will then identify a thematic framework which includes key issues, themes, and concepts necessary to examine and reference data. Thematic framework will be mainly developed from the issues that will be present in the objectives and the research questions though the issues raised by the respondents will also be considered. Indexing will be the next step which will involve assigning numerical codes to the textual data in the thematic framework. Indexing is closely followed by charting which involves putting data in the appropriate place in the thematic frame work. Researcher will then create charts which may enable him to put different issues from different respondents together. Finally, the last step involves mapping and interpretation a process that is meant to enable the researcher identify association between themes in order to provide explanations for findings. However, in case need be, the researcher may also consider using computer packages used for analyzing qualitative data (Pope, Ziebland, & Mays, 2000).
Significance and Conclusion
This study will be very significant because it will illustrate the conditions of families with an autistic child. Many studies that have been conducted only investigate on the major problems experienced by families having a child suffering from autism. This study will go a step further since it will analyze the effect of those problems in a family set up. The results will indicate some common issues and problems experienced by sixty families and the prognosis of those problems. For instance, the study will find out whether divorce and separation is common among the families with children suffering from autism. Although other families may still experience same problems, the main focus of the study will be to analyze whether those cases are more common in such families than in the normal families. In addition, the study will investigate whether the presence of a child suffering from autism affects the relationship between the members of the family. The research may add nothing new but it will shed some light on the nature of families having autistic children socially, financially and psychologically.
References
Autism . (2010). Web.
Beko, J. M., Konstantareas, M., & Springer, J. (1987). Parent and professional evaluations of family stress associated with characteristics of autism. J Autism Dev Disord , 17 (4), 565-76.
Brown, W. (2005). A Child With Autism. Web.
Centers for Disease Control and Prevention. (2009). Prevalence of the Autism Spectrum Disorders in Multiple Areas of the United States, Surveillance Years 2000 and 2002. Web.
Cuxart, F. & Fina, L. (n.d.). How a child with autism affects a functional family. Web.
Denzin, N. & Lincoln, Y. ( 2000). Handbook of Qualitative Research. London: Sage Publications.
Endreszl, L. (2008). Autism: Effects on Children and Their Parents. Web.
Evans, R. (2010). The Impacts of Autism on the Family. Web.
Howlin, P. (1988). Living with impairment: the effects on children of having an autistic sibling. Child: care, health and development (14), 395-408.
Morgan, S. B. (1988). The autistic child and family functioning: A developmental-family systems perspective. Journal of Autism and Developmental Disorders , 18 (2), 263-280.
Morgan, S. B., Rodrigue, J. R., & Geffken, G. (1990). Families of Autistic Children: Psychological Functioning of Mothers. Journal of Clinical Child & Adolescent Psychology , 19 (4), 371 – 379.
National Institute of Neurological Disorders and Stroke. (2010). Autism Fact Sheet. Web.
Pope, C., Ziebland, S., & Mays, N. (2000). Analysing qualitative data. BMJ , 320 ( 7227), 114-116.
Schopler, E., & Mesibov, G. B. (1984). The Effects of autism on the family. New York: Springer.
The National Institute of Mental Health. (2010). Web.