Autism Spectrum Disorders - Essay Example

The Impact of Autism Spectrum Disorders (ASD) On Parents ABSTRACT The aim of this research paper is to determine the kind of impact that ASD diagnosis can have on parents and what can be done to reduce the amount of stress in the parent’s experience. The research focuses on the impact that Autism Spectrum Disorder has on parents, mostly, emotions that parents experience and the factors that influence the stress to the families impacted by the diagnosis. The research involved interviews that revealed that most families were affected by ASD. It is the ultimate decision of the parents on what they prefer as a comfortable way to cope the situation. The interviews also revealed that there was a need for coping strategies. There was a consensus that parents may like to talk to others about the experience they have in ASD; whether it is personally or professionally. TABLE OF CONTENT INTRODUCTION ………………………………………………………………………..4 Problem Statement………………………………………………………………...5 Purpose of the Study………………………………………………………………6 Research Questions………………………………………………………………..6 LITERATURE REVIEW…………………………………………………………….……6 Autism Spectrum Disorder (ASD)……………………………………..…………..6 Emotional Effects ASD diagnosis has on parents……………….…………………8 Stress Experiences by Parents of Children with ASD……….……………………..9 METHODOLOGY………………………………………………………………………...10 Selection and Description of the Sample……………………………………...……10 Instrumentation and Data Collection………………………………………………..11 Data Analysis ……………………………………………………………………….11 Limitations …………………………………………………………………………..12 RESULTS……………………………………………………………………………………12 DISCUSSION ………………………………………………………………………..……..14 CONCLUSION………………………………………………………………….…………..14 RECOMMENDATIONS…………………………………………………………………….15 REFERENCES……………………………………………………………………………….16 APPENDIXES………………………………………………………………………………..18 INTRODUCTION In an ideal world, most families will have no stress no matter what situation gets in their way. However, most families with children with autism spectrum disorders become more stressed compared with families with typically developing children. Baron-Cohen and his collegues (2009) article supports that both parents of the children with ASD report significantly elevated stress levels compared to those with typically developing children. For one to understand the research content, it is significant to define the autism spectrum disorder. Autism spectrum disorder refers to a term that describes autism and four other disabilities affecting individual’s ability to communicate, socialize, and respond to individual’s environment. The spectrum usually gets diagnosed before age three. Autism is a spectrum disorder since children can have diverse characteristics or symptoms that affect them from mild to severe range. Some of the characteristics include delay in social interaction and communication, repetitive body movements, obsessions over certain objects and having specific rituals and routines. ASD tends to affect mostly the males compared to females. Currently, it is reported in Autismspeaks.org (2010) that in every 110 children, one is diagnosed with ASD and every 70 boys there is one with ASD. Additionally, there are no known ASD cures. However, there are several treatments that lessen the severity of the autism. Usually, people tend to think about the children diagnosed with ASD, and no one tends to think about the impact that the diagnosis has on parents. Often, parents with children diagnosed with ASD go through an emotional experience. The parents go through the thoughts of thinking that their child is perfect to thinking that their child has an incurable disorder that may affect every aspect of the child’s life. Hence, parents should learn how to cope with the situation after the initial diagnosis. It is because parents tend to struggle to get through their routines and may require having personal sacrifices while they balance their spousal relationships, job and family life. Hence, all these sacrifices may be stressful for one person. The term, ‘Stress proliferation’ describes the ASD impact on a family, specifically the stress that is felt by the child’s parents. Researchers state that stress proliferation refers to a process that happens in the initial stressor or stressor set in one life’s engenders domain additional stressor in other domains of life. Minimizing the amount of stress that parents experience once their child gets diagnosed with ASD is significant to ensure a good family environment. Before doing any additional research on the subject, existing research should first get acknowledged. Following the existing learned knowledge, ASD children parents can be questioned to determine how their child’s diagnosis of ASD affects their lives. The research will have an interview process that will have the parents sharing information about their emotions on their child’s diagnosis and what cause stress to them and how they cope with the stress. Following this data, I will be able to examine and recommend ways that can help the parents to cope and reduce the amount of stress they experience. Problem Statement Parents with children diagnosed with ASD often have stress because many issues get associated with the disorder. Parents should have healthier, better ways to cope and reduce the added stress that associates with ASD to their family. The society is supposed to be more accepting towards ASD. It is because the negative perception that some individual have on ASD can affect their families directly when their child is diagnosed with autism spectrum. Purpose of the Study The aim of this study is to determine the kind of impact that a child’s ASD can have on parents and what can be done to minimize the amount of stress on the parents. The research will focus on the ASD impact on parents, precisely, the emotions that parents experience along with what causes stress to the families directly affected by ASD. I will examine the current available research and interview western Wisconsin, who have a child with ASD. From the collected data, I will determine how parents get impacted by ASD and thus determining what parents need to reduce stress. Research Questions The study will focus on several research questions. What causes stress to parents with children diagnosed with autism spectrum? How does ASD diagnosis stress affect the parents? What do these parents think the community can do to support them effectively? LITERATURE REVIEW This chapter is a research and literature review that relates to impacts and stresses that autism spectrum disorder diagnosis has on parents. The topics in the literature review will include: information on ASD and how prevalent it is becoming among children, the parent’s emotional effects and data on how stress affect the parents. Autism Spectrum Disorder (ASD) This term can get defined as a complex developmental disorder that impacts an individual’s ability to communicate, socialize and respond to her or his environment and gets diagnosed at the age of three. Benson (2006) says that autism is among the most severe disabilities that affect young children. He says that the disorder adversely affect nearly every child’s development aspect. Leo Kanner first used the term autism while describing the children he was observing. Autism means alone, and the children group that he observed had a preference to be alone. The spectrum disorder word is added to the autism term because children can have diverse symptoms or characteristics affecting them from mild to severe range. A parent to a child with ASD and an author stated that no two children that have autism would be completely similar or alike. Thus, every child is in a different spectrum point. Various characteristics describe how the disorder affects children. Some of the characteristics comprise; a social and communication interaction delay, repetitive body movements, obsessions over certain objects, and having certain rituals and routines to follow throughout the day. Researchers added that the individual should meet at least six of the behavioral and developmental characteristics from the list before they are three years. During the diagnosis of the child showing the complex disorder’s characteristics, one is supposed to decide on the extent that the specific characteristics affect the child to determine if they fall on the spectrum. The various characteristics of the disorder can have profound impacts on the children’s parents. Moore (2007) argued that clinicians and parents agreed that uneven cognitive abilities, communication impairment and social relation problems were among the autism-related symptoms that stressed the parents of school-aged children. Similarly, Botts et al (2008) add that the behavioral symptoms associated with a child’s autism links to the parents’ stress. Currently, Autismspeaks.org (2010) states that ASD has no cure. However, there are various treatment options that children can have to lessen the severity of the symptoms. Additionally, they argue that an early intervention by treatment services can effectively improve the development of the child. The intervention helps the child from birth to three years of age to learn essential skills that they cannot learn on their own. Autism Disorder is increasingly becoming prevalent across the The United Kingdom. In 2009, Autismspeaks.org stated that a child’s probability to be with ASD was one in a group of 150 children. The most recent statistics states that today in every 110 children one gets diagnosed with autism. The disorder is also common in boys, and the autism website states that one in every 70 boys gets diagnosed with the disorder. The information is backed by the Department for Education and Skills (DES). CDC stated that if the United States has 4 million, 36, 500 children will be with ASD type (DES, 2006). Emotional Effects ASD diagnosis has on parents After ASD initial diagnosis, parents should learn how to cope with every change that occurs within the family. Cumming (2008 discovered that parenting children that have developmental disabilities is associated with high-stress levels, impaired mental health, impaired physical functioning and devaluation sense and blame. Experts of autism treatment said that they have talked with parents and mentioning how the news is terrifying, horrifying, depressing and stressful. Once parents hear that their child will not develop like a typical developing child, the parent is likely to experience a great emotional moment. Researchers argue that parents often undergo five grief stages; shock/denial, anger, guilt/bargaining, depression, and acceptance. They often go through the grief stages when they hear that their child has ASD and also because it is an unexpected change in their daily life. Parents with the disabled children present great levels of intense anger, dysphonia, depression, anxiety and guilt (Cumming, 2008). Individuals experience the grief stages because there is no sequence on how each stage should occur as some people tend not to experience some stages. Stress Experiences by Parents of Children with ASD Most of the parents with children diagnosed with ASD experience stress in several ways. Benson article (2006) states that autism’s effect on families appears to be very severe with autism children’s parents frequently reporting high-stress levels. The stress levels get associated with their children’s communicative and social deficits, dependency level, and problem behaviors. Fathers and mothers of children with the disorders tend to stress about diverse things. Mothers tend to have stress on giving appropriate care to their child, and fathers stress on the financial toll that ASD puts on the family income. In Hevey, Honan and Tehee’s (2009) study, there are several top stress sources reported by parents with ASD children. The sources comprise unpredictable and inappropriate behavior, the future, learning and education, personal constraints, social aspects, child’s interactions and friendships and finances. The term, stress proliferation is used in describing the effect of ASD on a family, precisely, the stress that parents feel. It is a process that occurs when a beginning stressor or stressor set in one life domain engenders additional stressors in other life domains (Benson, 2006). For instance, the initial stressor can be the diagnosis, followed by the stressors set like monetary issues as the parent(s) quit a job to take care of the child. Parents with ASD children may struggle in their daily routines and may require making personal sacrifices to balance their family life, job obligations, and spousal relationships. As a result, it is a great stress deal for an individual to handle. Parsons and his collegaues (2009) argued that most parents with children diagnosed with autism have great trouble in coping with their personal needs, leave along their child’s needs. Benson (2006) sums up the findings by stating that parent’s well-being may be directly or indirectly affected by their child’s disorder, with the stressor crossing and expanding into the parents’ life areas. METHODOLOGY This research’s aim is to determine the kind of effects that a child’s ASD diagnosis can have to parents and what can be done to reduce the amount of stress on the parents and the support that can be offered to them. In this chapter, I will discuss the methods and procedures used to complete the research. Additionally, the chapter focuses on the descriptions of the selection of the sample and instruments, the usage of the instrument process and the data collected as well as the study limitations. Selection and Description of the Sample The study’s focus is on the parents to children with ASD, in Slaithwaite, West Yorkshire and how they respond to their child’s ASD diagnosis. As a result, the sample used in this research comprised three parents who all have a child diagnosed with ASD and two other children. Distinctively, three mothers and two fathers were present in the interviews though the fathers contributed minimally than the mothers. The parents aged between 28 and 40 with at least two children. I also considered the age of the children and the time passed since they got diagnosed with ASD. The participants of the interview were contacted using various methods. I emailed out parents who were Wilberlee Autism Society members. Two parents responded and only one parent got interviewed. I verbally contacted two of the parents by interviewers’ family and friend’s network. Additionally, during the interview, the interviewer will make observations on the parents emotions. Instrumentation and Data Collection The interview questions formed the instruments of the study. The interview questions included items like; child’s general information, initial ASD diagnosis, parents’ reaction, how/if ASD has affected parent’s lives, the stress amount experienced after initial diagnosis and the experienced stress. Following the verbal interview, the interview questions copy was electronically emailed to the participants. In every interview, the interviewer met every parent at a location and time convenient to the parent. During the interview, the interviewer asked the questions and transcribed what the parent said. No validity or reliability measures have been documented because the interview was designed specifically for the study. Data Analysis The information collected from the parents’ responses to the interview questions got coded and analyzed to find differences and similarities. The differences and similarities discovered amongst the most pertinent questions of the interview got recorded in the tables. The obtained information assisted in determining the major cause of stress to the parent with a child diagnosed with ASD, to what extent does the stress affect them and how to cope with the stress. Limitations Limitations that can affect the sample selection process can comprise finding an ample willing participants number who meet the specific criteria to participate around Slaithwaite. The other limitations that affect the interview method comprise the varied ways that the parent chose to answer the interview questions along with the information they are willing to share. Hence, the participants may give less information compared to what is expected. RESULTS This chapter displays the data collected during the interviews. Tables will be used in displaying the parent responses to some of the questions. For clarifications, a different letter was designated for each family in assisting in differentiating between the three families. Pseudonyms were used to protect the families’ identities. Table 1. Basic Interview questions and responses from the parents Question Parent Response #2 What age did your child get diagnosed with ASD and how old is your child #3: what are your other children ages? A: Yash got diagnosed at 2years and 4 months and he is currently 5 years. B: Josh got diagnosed at 3years and he is currently 7 years C: Luke got diagnosed at 2 years and 9 months and he is currently 8 years. A: Kelvin-10, Shirley- 2, Riri- 13 B: Tina- 9 C: Czar- 12 The diagnosis question targeted on knowing when the parents realize their child may develop untypically, their reaction to the diagnosis, and the stages they went through. They also aimed to determine what they did prior to the diagnosis and their thoughts and emotions towards the news. Most of the parents knew their child’s situation before three years of age, and they were shocked to hear the news. The parents underwent the stress stages and could not do anything since they knew nothing about the disorder. See Table 2 in the Appendix. The life after diagnosis questions, see Table 3 in the Appendix, aimed at determining how the family changed the diagnosis and how other siblings feel about their other sibling with ASD. The questions were also to determine the kind of treatment the child received. From the responses, it was discovered that most of the family changed how they interacted and communicated with them, and most of their siblings are young to understand. Some of the treatments they used included Early Childhood program and Birth to Three programs. Lastly, the questions about the parents’ current living conditions, see Table 4 in the Appendix, inquired on how ASD affected the families’ financial status, if the parent still works, and how the disorder affected their spouse relationship. The financial costs are also presented in figure three and one in the appendix. The questions also targeted in knowing how they would like to get supported in coping up with the stress. The results clearly illustrate how ASD affects the parents’ lives. Each interview part adds to a great picture of the impact of ASD on parents. Additionally, the parents expressed different emotions during their interviews as presented in figure 2 in the appendix. Some seem to be very stressed while others had a lot to think on how to improve their children wellbeing. The other observation is that, mostly the female parents were more stressed compared to the male ones. Hence, this proves that the parents are also affected emotionally. DISCUSSION There are differences and similarities between the families collected from the study. First, in the basic questions, the three male children got diagnosed with ASD between the age of two and three. The literature review argued that ASD is common in males and is usually diagnosed by three years of age. Secondly, in the diagnosis part of the interview, parents noticed the different developments of their child in different times and ways. All parents were inevitably depressed once they heard the news. Experts on autism treatment said that most parents get stressed, terrified, depressed and horrified once they got the news. The parents underwent different grief stages, and all of them were in shock and anger. Thirdly, in the ‘life after diagnosis’ research, two out of three parents claimed to experience changes in their lives due to the diagnosis. It is also evident that the ages of the other sibling has a great effect on their feelings towards the sibling with ASD. Following the diagnosis programs, all parents found intervention programs for their child. Lastly, the parents expressed how frustrating and confusing the whole process was in their current living situation. As stated earlier in the review, parents may struggle with getting through their daily routines and may require personal sacrifices to balance their life due to the obligations prior to their child being affected by ASD. Therefore, according to the observations in the appendix, there is several data that I observed. CONCLUSION The research information from the literature review and the interview proved that parents cope with stress in various ways. In the end, it is the ultimate decision of the parents on what to consider as an effective as means of coping. From the parent interviews, it is evident that there was a need for some coping strategies. RECOMMENDATION Within this established information, parents with ASD children need better access to professional help and support groups. The next logical step is establishing contacts that will be accessible to the families in need. Thus, parents will be able to get the advantage of speaking with other people on their experiences with ASD. REFERENCE LIST Autism speaks, 2010. Facts about autism. Available at: [Accessed 19th May 19, 2015] Baron-Cohen, S., Scott, F., Allison, C., Williams, J., Bolton P., Matthews, F., & Brayne., C., 2009. Prevalence of autism-spectrum conditions: UK school-based population study. British Journal of Psychiatry, Vol 194, 500-9. Benson, P., 2006. The impact of child symptoms severity on depressed mood among parents of children with ASD: The mediating role of issues proliferation. Journal of Autism and Development Disorders, Vol 36 (5), 685-695. Botts, B., Hodge, D, Hoffman, C., Lopez-Wagner, M., & Nam, C., 2008. Children with autism: Sleep problems and mother’s stress. Focus on Autism and Other Developmental Disabilities, Vol 23 (3), 155-165. Moore, C. (2007). Speaking as a parent: thoughts about educational inclusion for autistic children. In Cigman, R. (Ed) Included or Ecluded? The Challenge of Mainstrean for Some SEN Children. London: Routledge. Department for Education and Skills (2006). First Annual Report. Autism Research Coordination Group. Available at: [Accessed on 13th May 2015] Cumming, J., 2008. Legal and educational perspective of equity in assessment. Assessment in Education, Vol. 15 (2), 123-35. Hevey, D., Honan, R., & Tehee, E., 2009. Factors contributing to stress in parents of individuals with autistic spectrum disorders. Journal of Applied Research Intellectual Disabilities, Vol 22(1), 34-42. Parsons, S., Lewis, A., Davison, L., Ellins, J. & Robertson, c., 2009. Satisfaction with educational provision for children with SEN or disabilities: a national postal survet of views of parents in Great Britain. Educational Review Vol. 61. No. 1, 10-47. APPENDICES Table 2 Diagnosis Questions and responses from parent interview Question Parent Response #1: When did you discover your child may not be typically developing? #4: What was your reaction upon hearing your child’s diagnosis? #5 Did you go through the grief stages? #6. Did you know anything about ASD prior to your child’s diagnosis? #7: Do you feel anything positive came out of hearing your child’s diagnosis? A: 1 year and 4 months. Yash’s doctor discovered that he was not reaching the expected development benchmarks B: 1 year and 3 months. Josh’s doctor realized that something is wrong, but did not know what. C: 1 and half years. Luke began to flap hands and was not talking and did things repetitively. A: Shocked B: Thankful its was not fatal C: Gave validation, though it was sad to hear the news. A: Yes- guilt, shock, acceptance & depression B: Yes- denial?shock, guilt, anger & depression C: Anger, shock/denial & acceptance A: Knew nothing B: Knew nothing, but had about it C: Knew it had something to do with communication and socialization. A: No B: Yes C: Yes, felt relief. Table 3. Life after Diagnosis Questions and Responses Question Response #1: Did your parenting ways change after your child’s diagnosis? #2b: How do your other children currently feel about their sibling with ASD? #5: What is the first kind of treatment your child received? A: Yes, they changed the way they communicated with Yash. B: Yes, they changed how they interacted with Josh C: Not really, just looked at ways to manage his self-esteem. A: They are being protective but the younger one is too young to understand B: The other sibling is too young to understand. C: The other sibling is too young to understand. A: Early Childhood program B:Birth to Three program C: Birth to Three program Table 4. Parents current living situation questions and responses Question Answer #1: How has ASD affected your family financially? #2: Do you and your spouse work? How often? #5: In what ways has ASD affected you? #7: If you experienced any stress how did you cope up with it? A: Waiver paid for the most B: Waiver paid for everything C: Waiver paid for the most A: Mom stays at home and dad works long hours B: mom took low paying job for flexible hours and dad works long hours C: Dad works long hours and mom stays at home. A: Mentally, physically and emotionally B: Mentally, physically and emotionally C: Mentally, physically and emotionally A: Did not do much to cope B: Met with a counselor and took medications C: Bottle up stress and emotions. Interview notes The interview targeted to have the parents with children who have ASD to express their experiences and the different challenges they face. All interviewers were parents as the research aims at determining the impact to parents as a result of having infected children. First the interview questions determine whether the parents changed their ways of parenting once they released their child is a suffering from ASD. Additionally, the question aims to determine the other sibling’s reactions. Secondly, the interview questions determine their reaction and any grief stages they experiences. Thirdly, the question identifies any prior knowledge on the spectrum and the treatment the children undertake to improve their condition. Lastly, the question objective is to identify the diverse stress that the parents undergo as they take care of the affected siblings. Therefore, the main objective of the research is to identify the different impact to parents as a result of ASD. Figure 1. Figure 2. Figure 3 Read More