Families living through autism

How do families deal with a child with Autism? What are the challenges and how do families cope?

Introduction

Dear Mr. X,
Welcome to Group 1222! Thank you for choosing our group to conduct the empirical research for your article. We hope you can use our preliminary research and annotated biographies in the most useful ways. Your concerns regarding how families cope with autism have been addressed within the research that we have made easy for you to incorporate as you take your next step. We hope you find these references informative and resourceful as we have given you a complex variety of sources and additional integrated research. Because it can be challenging to live with an individual with autism, It is critical that all families of children, adolescents and adults living with autism receive support in many areas in order to cope. It has been proven that education surrounding the condition is an extremely effective strategy for reducing stresses with living with an autistic individual, but there are many challenges and coping styles that must be addressed. (Twoy, Connoly & Novak, 2007, pg 252)

What is Autism?

Autism Spectrum Disorder Autism Spectrum Disorder (ASD) is a term used to describe a group of developmental disorders that include:

  • Autism
  • Asperger Syndrome
  • Pervasive Developmental Disorders (PDD)
  • Rett's disorder
  • Childhood Disintegrative Disorder (CDD)

Most people with ASD have trouble with social interaction and communication. They may also have unusual interests, activities, and behaviors.
Researchers are working to find answers about the causes and most effective treatments for ASD, but there is still much that is unknown. ("Autism spectrum disorder," 2011)

Key Terms

  • Coping - constantly changing cognitive and behavioral efforts to manage specific external and/or internal demands that are appraised as taxing or exceeding the resources of the person (Cambridge, 2012)
  • Parenting - The rearing of a child or children, especially the care, love, and guidance given by a parent. (Cambridge, 2012)
  • Relationship - A connection, association, involvment (Cambridge, 2012)
  • Stress - Psychological and physical strain or tension generated by physical, emotional, social, economic, or occupational circumstances, events, or experiences that are difficult to manage or endure. (A. Colman (Ed.), 2009)
  • Strategies -Is a plan of action designed to achieve a vision. (Cambridge, 2012)
  • Style - a particular, distinctive, or characteristic mode of action or manner of acting (Cambridge, 2012)

There are many psychologists, both in the field of research and of practice who have worked and are working to define autism. It is a complex condition, with multiple theories and conceptions associated with it. Autism is currently known to be a behavioral syndrome, characterized by multiple neurological injuries that run a similar course to other developmental disorders. Characteristics of autism include social deficits and communication abnormalities. It is a complex disorder, and as such, people are generally diagnosed somewhere along the Autism Spectrum, as opposed to "with autism". The various kinds of characteristics of autism are defined in the DSM III R (Diagnostic Statistical Manual of Mental Disorders). (Christopher, 1990, pg 61)

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The onset of symptoms of Autism is known to be within the first months of life - between the ages of three and eighteen months. There is a small number of children with late onset autism - with symptoms appearing in the adolescent and even adult years. With the vast array of diagnostic criteria as well as conditions associated with the blanket term of autism, the precise definition is still being worked out.

Autism Spectrum Disorders

The notion that autistic disorders exist on a spectrum has been widely advocated by numerous experts on the subject. One in particular is English Psychologist Lorna Wing who states that there is a spectrum of severity with symptoms ranging from mild to extreme. In support of this conception that there is a qualitatively unique entity or one group of social impairment syndromes, she presents convincing evidence that there is a meaningful group of syndromes characterized by a triad of social, language and behavioral impairments - Autism Spectrum Disorder. (Phetrasuwan, Margret & Mesiboy, 2009, pg 206)

Autism Spectrum Disorder (ASD) is a group of five related neurobiological disorders that include:

  1. Autistic Disorder : Children with this disorder show more subtle impairments in language and no delay in early language development.
  2. Asperger’s Disorder
  3. Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS): This disorder is diagnosed when significant clinical symptoms of autism are present but there are not enough of them for a diagnosis to be confirmed.
  4. Childhood Disintegrative Disorder: This disorder is different from other forms of ASD. Children with CDD experience a developmental regression after the first two years of life, which are often characterized by normal development.. These children experience the disintegration of previously learned skills - language, social skills, bowel and bladder, play and motor skills.
  5. Rett’s Disorder: This disorder is seen after a normal early development where the affected child experience progressive regression in development between 7-18 months of age. This pattern includes decline in cognition, behavior, social, growth and poor coordination skills.

Individuals with ASD have an atypical pattern of development that affects multiple areas of functioning. As a result of these functional deficits, autistic individuals appear to have very little concern for the thoughts and feelings of other people because they lack the ability to understand the implicit behaviours of others. They have poor social skills, lack a social language and often present unpredictable behaviours. (Phetrasuwan, Margret & Mesiboy, 2009 pg 206-207)

This table provides a brief summary of the developmental and behavioral manifestations of each Autism Disorder

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Autism is on a spectrum of disorders that affects each individual differently, ranging from those who are very severely affected with many characteristics to those who show only mild effects with fewer characteristics. This concept of ASD has been useful in facilitating the diagnoses of younger children with autism. It has also been used for parental/family interventions with behavioral and developmental approaches towards the individual with autism. However, no one knows the causes of autism and the cure of the actual diagnosis.

Etiological Factors & Treatment of Autism

Factors
Researchers are continuously investigating the causes of autism, including the link between heredity, genetics and medical problems. Autism represents a syndrome of neurological dysfunctions which leads to autistic symptoms that can be associated with a number of medical conditions such as tuberous sclerosis, neurofibromatosis, rubella embryopathy and lactic acidosis (to mention a few). There is an inclusive indication that brain injuries are more than 90% autism cases that has been screened by the population. The indications are associated with medical conditions known to produce brain dysfunctions, chromosomal abnormalities, major CAT scan abnormalities, ECG abnormalities, auditory brain stem response and epilepsy. Whether all cases of autism are caused by underlying brain problems, is still a matter of debate. (Christopher, 1990, pg 64))
Treatment
There is no known cure for autism. In some cases, preventative measures such as dietary control of lactic acidosis have proven effective. It is unlikely that there will ever be one specific treatment that will lead to improvement of cases of autism. Special education and behavior modification programs have been shown to be effective in reducing behavioral problems, promoting communication and improving social skills (Christopher, 1990, pg 65). These methods are most likely to be effective in the context of family and community programs.

Challenges and Coping for Siblings

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Challenges

The impact of autism on siblings

Ferraioli, S. J., & Harris, S. L. (2009). The impact of autism on siblings . Social Work in Mental Health, (8.1), 41-53

This article does an effective job in describing Piaget’s stages of development and corresponds them to how a sibling of a child with ASD may understand the disorder based on their stage of development. Page 43 outlines the impact genetics may play on siblings of children with ASD. It describes studies of how some siblings may carry genes that classify them as a "Broader Autism Phenotype" that may render some siblings vulnerable to more psychological challenges. Page 44 of the article gives some examples of positive relationships siblings experience, as well as examples of some less positive experiences these siblings may have when interacting with their sibling with ASD. Some of these experiences include: internalizing behavior like anxiety or depression more often than children with other mental disorders, or no disorders at all. This information may be interesting to look into when composing your article as it depicts indicators of the different kinds of influence’s living with a child with ASD may have on a sibling. Page 45 of the article outlines the misunderstandings children aged two and a half to six may have on mental disabilities. On the bottom of the page, it describes the importance of coping strategies for these children and how providing these siblings with adequate and appropriate developmental information on ASD may be beneficial. The article continues to describe conflicts that siblings of children with ASD may experience when the siblings are 7-11 years, teenagers, as well as psychological issues that may arise in siblings as far as adulthood. This article is extremely effective in providing information about the experiences and challenges associated with siblings of children with ASD at each life stage. It outlines clear behaviors and feelings siblings may experience, with reasoning behind it which is useful information to help understand why coping strategies are beneficial to siblings of children with ASD.

Coping

Siblings of Individuals with an Autism Spectrum Disorder: Sibling Relationships and Wellbeing in Adolescence and Adulthood

Orsmond, G. I., Kuo, H., & 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.

Sibling relationships are very important to examine when looking at how families cope with Autism. Most studies are focused around mother coping and stressors, but sibling relationships are deeply affected by their sibling with ASD as well. The altered family dynamic while each member is coping with the stress associated to having a child with a disability may cause a big impact on siblings' psychological development. Siblings play a big role in each others lives, and after parents are deceased, adult siblings may be responsible for caring for their sibling with ASD. Therefore, helping siblings cope and understand Autism is an important factor to examine. This article is effective in looking at emotion-centered coping strategies and problem-focused coping strategies. It is a detailed study that included mailed questionnaires, as well as phone interviews with siblings of children with ASD. Details about the participants and methods are found on page 63, 64 and 65. Page 67 and 68 outline which coping strategies were classified under emotional-focused, and which were classified under problem-focused, as well as which styles were used most by the participants in the research conducted. Table 2 on page 69, as well as information on page 75, outline the comparison of adolescent and adult siblings in regard to their coping style and their effectiveness. Information throughout this article depicts research on the important roles parents play in the quality of relationship, as well as the behavioral development of siblings of children with ASD. These coping styles used by different age groups of siblings may be beneficial to include in an entry on "Families Living Through Autism" as it shows main trends of types of coping used by siblings, which types are effective in regard to which age group, and why. I feel as though the point of parent involvement in these sibling relationships is a key point to highlight in your entry because throughout the research I have done, it is a underlying trend. The fact that the amount of information about coping styles for siblings is scarce is an important thing to consider.

Adjustment, Sibling Problems and Coping Strategies of Brothers and Sisters of Children with Autism Spectrum Disorder

Ross, P., & Cuskelly, M. (2006). Adjustment, sibling problems and coping strategies of brothers and sisters of children with autistic spectrum disorder. Journal of Intellectual and Developmental Disability, 31(2), 77-86.

This article examines three basic research questions: What stressors are commonly experienced with siblings of children with ASD? Secondly, what coping strategies do children use to deal with these situations? Lastly, what associations exist between sibling adjustment, the coping strategies they use, and their knowledge about their sibling's disorder? This research involved 25 typically developing children or adolescents with a sibling with ASD from two parent families. It includes a 21-question questionnaire designed to gain information about the children's knowledge of the disorder. It also assesses 10 common coping strategies; distraction, social withdrawal, wishful thinking, self-criticism, blaming others, problem solving, emotional regulation, cognitive reconstructing, social support and resignation. Children were asked to recall a recent problem, what feelings it produced, to identify whether they used any of the coping strategies listed above, and their beliefs on the effectiveness of those strategies.This Research however, was unable to find a correlation between the children’s coping reports and adjustment. The article suggests a comprehensive interview may be more effective in clearly identifying which coping strategies are apparent in well-adjusted children. Although this article is unable to associate coping strategies and adjustment in these siblings, I still believe it is an excellent resource for your article for on families living through Autism because it gives a clear understanding of what coping strategies are used under what scenarios the children are in. It also provides information from the children’s perspective on the effectiveness of the ways they choose to deal with these problems. Since ASD has such a wide variation of behaviors and the way siblings adjust to them, it is very difficult to find specific information on the coping methods of siblings. Most research is more focused on the primary caregiver, the mother . It may be valuable in identifying the importance of sibling relationships and coping strategies in your article as there are many challenges siblings may face in a family with a child with ASD. More research on how to positively cope with those issues may make a big difference.

Parents' Challenges Affect Siblings' Coping

Sibling Relationships when a Child has Autism: Marital Stress and Support Coping

Rivers, J.W., Stoneman, Z. ( 2003, August). Sibling Relationships when a Child has Autism: Marital Stress and Support Coping. Journal of Autism and Developmental Disorders, 33 (4), 383-394
This study is relevant to the question at hand because it looks at the effects on and the coping styles employed in sibling relationships between typically-developing children and siblings with autism. It takes a family theory approach, and in doing so it recognizes that within the complex relationships in a family with a child who is autistic, the condition of the marital relationships has an effect on the sibling relationships. An important coping style is also measured, that of external support coping. This study observes the correlations between marital stress, exterior support coping and the quality and nature of sibling relationships between typically developing children and their autistic sibling. The method is interesting to note in the sense that they asked both the typically developing siblings and parents of autistic children to fill out questionnaires independently of each other. They did so in order to gain a subjective reading from the children, as opposed to solely what the mother or primary caregivers observed. It employs a review of former studies, as well as the research and findings of this particular study. The results show that external social support coping is effective in surmounting the challenges families with autistic children face. It is important to note that the population studied was almost entirely made up of families who were middle-class, moderately educated and of Euro-American descent with only three families being African American, and only one being Hispanic. This article is relevant, and will be helpful in the writing of your article because it elucidates the complexity of the relationships and the challenges faced by families living with autism. It also clarifies that external informal social support coping is a positive coping style, while also highlighting that in the particular case of sibling relationships, formal social support coping did not have a positive effect.

Challenges and Coping for Parents

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Challenges

Parental Challenges and Strategies

Olivier, M.A.,& Hing, A.D.(2009). Autistic spectrum disorders (ASD): Parental challenges and strategies.Vol.4,(1),58-66.

This article may be very helpful for your concerns regarding how parents cope with a child with ASD and what challenges parents may need to overcome as well as the copying strategies they may use. This article emphasizes the significance and importance of an accurate diagnosis and the successive support for parents of a child with autistic spectrum disorder (ASD). It outlines that parents must ensure that their child’s specific needs are met. The authors of this article have conducted a research analysis in South Africa to highlight effective strategies for parents with an ASD diagnosed child. (Olivier & Hing, 2009, pg 59) A qualitative research approach was used in terms of interviewing parents from all socioeconomic locations, languages, races and gender. Each interview lasted 40-50 minutes and was verbally transcribed. Patterns emerged that depicted many parents agreed and had similar challenges, strategies and coping styles towards their child with ASD. Within the article you will find that additional research has concluded theories of parental coping strategies focusing on: effective life management, cognitive behavioral techniques, problem solving, cognitive restructuring, monitoring thought/feelings, parental positive perceptions relating to coping with their child's disability, and positive psychological states in helping parents to cope. The data of the research displayed a variety of results that show that parents find difficulties through/of: comprehension of the diagnosis (acknowledgment that their child has ASD), personal problems such as depression, marital strife, financial constraints, social withdrawal and physical illness that related to the ASD within the family, as well as developmental challenges of the ASD child, communication challenges of the ASD child, aggravating behaviors of the child with ASD, which increased stress towards the families. (Olivier & Hing, 2009, p. 59-64). There are additional recommendations that can be reviewed on page 65 that outline additional coping strategies and ways parents could strengthen their skills with the deficits of their child of autism.This article outlines many ways parents cope, as well as areas parents may need more support which are essential to highlight when writing about families coping with Autism (Olivier & Hing, 2009, pg 65)

Coping

Coping Strategies Used by Parents of Children with Autism

Twoy, Richard.,& Connoly, P.M.,& Novak, J.M.(2007). Coping strategies used by parents of children with autism. Journal of the American Academy of Nurse Practitioners 19.5, 251-206.

This article may help you investigate the coping strategies used by families of children with ASD as it outlines a descriptive survey for children and parents dealing with mental disorder. Participants had to complete a 15-question demographic questionnaire and The Family Crisis Orientated Personal Evaluation Scales (F-COPES). The instrument lists 30 coping behaviours and focuses on 2 levels of interaction defined in the Resiliency Model of Family Stress, Adjustment and Adaptation. This article depicts how families employ a variety of coping mechanisms to deal with stress and reveals which coping strategies produce the most positive outcomes for parents. Within the research there are 3 questions that were conveyed and measured. First, what is the level of adaptation among persons with a child diagnosed with ASD aged 12 years and under? Second, Is there a difference in coping based on demographics of gender, marital status, ethnicity, english as a second language, income and education. Thirdly, what is the time lag between parent’s suspicion of ASD and the actual diagnosis? F-COPES further divided coping strategies into 5 subscales of coping styles; acquiring social support, reframing, seeking spiritual support, mobilizing family to acquire and accept help, and passive appraisal. (Twoy, Connoly & Novak, 2007, p. 252) This study reveals the resiliency and highly adaptive nature of these parents who are under severe strain and stress of caring for a child with ASD. The effective ways they coped as a family were in the areas of informal and formal social support networks. The study also supports the need for early recognition and diagnoses of ASD and referral for early intervention for better outcomes for the children and families affected by ASD. The findings of the study within the article suggest that many parents find active coping strategies to be more positive ways of dealing with stressful events. An avoidant coping strategy such as passive appraisal can be stress-reducing for a short time, however, avoiding the problem and not directly addressing the stressful events can be detrimental to the family. (Twoy et al., 2007, p. 257-258)

Pottie, C. G., Ingram, K. (2008) Daily stress, coping and well-being in parents of children with autism: A multilevel modeling approach. Journal of family psychology (22), p. 855-864

Potter & Ingram identify parental coping responses for parents who experience stress from caring for children who suffer from a mental disorder. The study proved to illustrate how parents adapt to the daily stress of rearing a child with ASD. These parents experience a significantly higher level of stress and psychological distress. A connection between the stressors and the evoked responses with coping mechanisms was outlined. Such stressors as an event, individual factors, personal or family resources, contextual or situational factors, or cognitive/behavioural responses. Coping has been postulated to affect a parents psychological well-being through 3 mechanisms. First, directly affecting the psychological well-being independent of the stressors effect or stressfulness. Second, allowing coping to act as a moderator between the stressor and the psychological well-being. Thirdly, the stressor precedes and influences the coping responses, where the coping responses influence psychological well-being. Increased use of problem-focused, support seeking, emotional regulation, compromise, and positive re-framing coping are specific indicators that improve positive moods in parents experiencing daily stress The following coping strategies were present in the study: escape, social support, problem-focused coping, distraction, positive re-framing, worrying, emotional regulation, withdrawal, compromise, and helplessness. Such coping responses have been proven to be more or less effective than others in the hopes of alleviating daily stress experienced by parents caring for children who have autism.

Challenges and Coping for Spouses

Parenting children with autism spectrum disorders: The Couples relationship

Brobst, J. , Clopton, J. , Hendrick, S. , (2009). Parenting children with autism’s spectrum disorders: the couple’s relationship. Focus on autism and other developmental disabilities (24), pg. 38-49

Caring for children with special needs, autism to be specific, has increased the amount of stress and strain experienced by couples. A common dilemma experienced by couples is the challenge with preserving adequate time for both the children and their partners. Alarmingly, Brobst, Clopton & Hendrick (2009) highlighted the positive correlation between caring for children with disabilities and divorce. Results show that parenting a child with a developmental disorder can create a challenging environment for both the husband and the wife in the marriage. It is evident that some of the negative consequences that result from parenting a child with special needs is a decreased involvement of the father, creating further a hostile environment. Surprisingly, Brobst,Clopton & Hendrick (2009) outlined the positive outcomes to rearing a child with a disability. For example, they found that 70% of parents reported that having a child born with an illness or disability has no effect on the relationship at all. In congruence to the above statistic, Brobst, Clopton & Hendrick (2009) postulated that the challenges often experienced by couples raising a child with autism will actually strengthen and enrich their relationship. Aware of the risk that couples may neglect their marriage due to raising a child with a disability, many are conscious of this challenge and work harder to keep their marriages strong. Brobst, Clopton & Hendrick (2009) further identify the resiliency displayed by couples when faced with daily challenges related to rearing children with disabilities, and their determination in accommodating their child/children's specific needs. In this study, the participants included 25 couples whose children have ASD, and 20 couples whose children do not have developmental disorders. The parents ranged in age from 2-12 years of age. The couples were Caucasian, and most had a college degree (64%). On an interesting note, efforts were made to find more diverse participants seeing that not all couples raising children with autism are of Caucasian background. Sadly, parents of children with ASD reported less relationship satisfaction than comparison parents with children who have no disability. This article is relevant to the question because it examines the family dynamics tied with raising a child with autism. Often times, very little research is devoted to observing marital relationships and support such as counseling. Interestingly, this article further highlights the positive outcomes of rearing children with disabilities. This article illustrates the contributing factors, such as stress, which directly influence couples' relationships. In addition, Brobst, Clopton & Hendrick (2009) carefully address the various challenges experienced by couples raising children with autism and were able to deviate from examining the negative consequences and pay close attention to what keeps marriages together.

Religion as a Coping Mechanism

Religiosity, Spirituality and Socioemotional Functioning in Mothers of Children with Autism Spectrum Disorder

Ekas, N. V., and Whitman, T. L., & Shivers, C. (2009). Religiosity, spirituality and socioemotional functioning in mothers of children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 39, 706-719.

This article deals with three elements - religious beliefs, religious activities and spirituality - and a multitude of dependent variables in order to define the role of religion in maternal socioemotional health. It defines religion as a form of social coping and points out that the efficacy of this type of coping depends on the person’s specific beliefs and the extent to which these beliefs play a role in everyday life. The role of religion is complex because it operates on many different levels in many different ways. According to the article, the three elements can either be positive or negative styles, depending on the approach of the individual. For example, if someone’s religious beliefs lead them to think that their child is a punishment from God, this leads to negative outcomes, whereas someone who sees their child as a gift from God, often has a more positive outlook on their situation, and thus this style of coping leads to positive outcomes. The study measures the three elements and their effects on: general life-stress, parenting stress, negative affect, depression, self-esteem, life satisfaction, positive affect, psychological well-being, optimism and locus of control. It became clear that generally speaking religious belief and spirituality led to positive outcomes, but religious activities tended to lead to negative outcomes. Some issues with this study involve the sample population and the meaning of the data outside of the context of non-existent longitudinal data (is the effect of religion short term? long term?). The results cannot be generalized to all cultures because of the 119 mothers involved, 95% were Caucasian and middle-class. Overall, this article is relevant to the question of how families can cope with the stresses of a child autism because it further clarifies the complexity but also the layers of meaning and coping that religion engenders. It makes an important clarification between religiosity, religious activity and spirituality. Its conclusion, that religious belief and spirituality has a positive effect on mother’s socioemotional health, is an important one.

Religious Coping in Families of Children with Autism

Tarakeshwar, Nalini., Pargament, Kenneth I. (2001). Religious coping in families of children with autism. Focus on Autism and Other Developmental Disabilities, 16, 246-260.
This article assesses the role of religion in the coping of families of children with autism. Sixty-five parents' names were obtained from organizations that offer parent support services in the area of Northwest Ohio. Of those sixty-five parents, fifty-eight were contacted. Forty-five of those parents then participated in a survey and of those parents, twenty-one also participated in a semi-structured interview. The survey and interview were designed to measure demographic variables, religious involvement, stressors, religious coping, religious outcome, psychological adjustment, and stress-related growth (Pargament & Tarakeshwar, 2001, p. 249-251). The results indicate that positive religious coping (such as seeing the illness as the will of God or a chance for spiritual growth) is associated with better religious outcome and stress-related growth (such as higher self-esteem and better psychological adjustment). Negative religious coping (such as showing religious discontent with congregation and God) are associated with greater depressive affect and lower religious outcome, such as poorer mental health and poor resolution (Pargament & Tarakeshwar, 2001, p. 253). Tarakeshwar and Pargament warn that the study has some limitations. The relatively small sample size limits the power of quantitative analyses. Secondly, the present sample consisted mainly of parents with a Caucasian background, so the results may not reflect the experiences of parents from other cultures. Fourth, the study is limited by its cross-sectional design. It is not clear whether the negative correlates of the use of negative religious coping are long lasting. Fifth, the results of the study could be biased because it relies on self report measures (Pargament & Tarakeshwar, 2001, p. 257). Nevertheless, the results of the study have important implications for professionals who work with families of children with autism (such as suggesting effective coping methods), especially when these families look to religion for support.

Coping strategies of Orthodox Jewish Mothers of Children With Autism Spectrum Disorders

Kopolovich, Rikki. (2008). Coping strategies of Orthodox Jewish mothers of children with autism spectrum disorders. ProQuest Dissertations & Theses, 48(03). (UMI No. 1478448)

Mothers in Orthodox Jewish homes are the main caregivers and keep their household in order. During holidays and the Sabbath these responsibilities increase drastically, and having a child with autism causes even more strain (Kopolovich, 2008, p. 5). According to this dissertation, the Jewish community needs to be questioned with how they deal with people with disabilities because it is extremely rare to find a person with a disability at a synagogue. Being exposed to their culture is very important for young people, but it is difficult for children with autism in Jewish cultures because of the barriers they face. (Kopolovich, 2008, p.5) Very few Jewish schools and synagogues have the resources to deal with people with disabilities, and according to this dissertation only fifty percent of Orthodox Jewish families found to have a child with a disability were found to be coping and adjusting. (Kopolovich, 2008, p. 3) This dissertation was a project done to help understand the coping mechanisms of Orthodox Jewish mothers raising children with autism. Three Orthodox Jewish mothers codenamed Chavie, Leah, and Sarah each participated three in-depth interviews over a three month period. An audiotape was used to collect data, and the author compared similarities and differences among participants. The mothers generally viewed their religious life as a burden. They discussed stressors such as keeping the child kosher at school and the child's lack of understanding the importance of religious rituals. Despite this, they viewed having a child with autism in a positive way. They generally believed that God does not give a person anything they can't handle, and that everything happens for a reason. As a result of their faith, they all felt lucky to have been blessed with their child, stating that God only gives special children to special parents. (Kopolovich, 2008, p. 33-34) All three mothers somewhat used prayer as a coping strategy. They didn't have much time to pray, however they found it helpful to recite short excerpts from the Tehillim when they had the chance. They felt they could communicate with God in their own language, and this strong connection helped them to continue caring for their child (Kopolovich, 2008, p. 36). The dissertation goes in depth and discusses how the mothers deal with six distinct challenges: coping with the diagnosis, coping with thinking about their child's future, coping with all their duties (including their other children), coping with guilt caused by not spending time with their child, coping with their child's inappropriate behaviour in public, and coping with the stares and glares that come as a result of inappropriate behaviour. The dissertation also shows how these mothers use social support as a means of coping, as well as support from family members including husbands, siblings, and grandmothers. With the results, the author reveals three themes: making sense of the situation through religion, living with the disability, and social support as a means of coping. The study has a couple of limitations. Despite the interviews being in-depth and varied over a three month period, the sample size is very small. Secondly, the subjective experiences of these Orthodox Jewish mothers may not hold true for other Orthodox Jewish mothers. Nevertheless, this article can be of great help in understanding the coping mechanisms at work within mothers in Orthodox Jewish culture, and clinicians dealing with Orthodox Jewish parents can use this as an aid for increasing cultural sensitivity when attending to their clients (Kopolovich, 2008, p. 67).

Cultural/Alternative Multicultural Styles

Latina Mothers Raising Children With Autism

Cruz, Roxana. (2011). Challenges and coping strategies of Latina mothers raising children with autism. Masters Abstracts International, 49(01). (UMI No. 862780918)

Currently there are very few studies concerning Latino beliefs about disabilities (Cruz, 2011, p. 53). The purpose of this dissertation was to discover the challenges Latina mothers face while raising children with autism and the coping strategies they use. Twenty Latina mothers participated in in-depth interviews with questions from a researcher-developed interview guide. With the results, the author concluded that the main challenges of these Latina mothers were: cultural challenges, familial impact, financial impact, fear for their child's future, disclosure of their child's disability, and service seeking (Cruz, 2011, p. 35-40). Coping strategies included: utilizing their support system, intellectualization, and self-care (Cruz, 2011, p. 42-43). Surprisingly, less than half of these Latina mothers felt that religion was a coping strategy (Cruz, 2011, p. 51). The study is mainly limited by the sample size and the fact that only one agency that serves the Latino population was used for the recruitment of participants. Results cannot be generalized as the sample was recruited through Fiesta Educativa Inc. and through snowball sampling. Despite these limitations, the study is still valuable because it helps to understand the challenges faced by some Latina mothers in particular while raising a child with autism, as well as how they cope with the diagnosis and behavioural problems (Cruz, 2011, p. 52). It is important to note that most participants stated that the Latino culture doesn't understand intellectual disabilities, and almost half of the participants stated that their families were judgmental and not understanding of the situation (Cruz, 2011, p. 37). If these parents can't even turn to their family for support, then social workers need to understand the challenges of parents in all cultures and their beliefs, values and goals.

Taiwanese Parents Raising an Autistic Child

Lin, Ching-Rong., Tsai, Yun-Fang., Chang, Hsueh-Ling. (2008) Coping mechanisms of parents of children recently diagnosed with autism in Taiwan: a qualitative study. Journal of Clinical Nursing, 17(20), 2733-2740.

When a child begins to speak later than other children in Taiwan, the parents often quote a Chinese proverb that says "great minds mature slowly." They often refuse to get their child diagnosed until they start showing more serious behavioural problems. Even when do they get their diagnosis, parents often deny their child's autism until it is confirmed by several doctors, and even then some parents still refuse to accept it. On the other hand, some parents quickly accept the diagnosis and turn to the medical staff for support, believing that learning about autism as soon as possible will benefit their child (Chang, Tsai and Lin, 2008, p. 2734). The purpose of this journal article was to describe the coping mechanisms of Taiwanese parents of children who had been diagnosed with autism, especially during the early period after learning their child's diagnosis. Seventeen parents of children with autism were interviewed at a medical centre in Northern Taiwan while they were still waiting for free national day care arrangements. Results show that there are nine main coping mechanisms in three categories. The first category; adjusting by self-change, includes adjusting parental cognition, adjusting daily routines and life plans and participating in autistic parents' groups or relevant courses. The second category; developing treatments for the child and looking for support, includes arranging for professional treatment, changing interactions in parental guidance of the autistic child, and planning for the child's future. The third category; seeking support, includes seeking support from relatives outside the nuclear family, adjusting demands on and expectations of the autistic child's siblings, and seeking support in social networks. (Chang et al., 2008, p. 2736-2737). This study is useful for helping parents identify whether or not they are using healthy coping strategies, and for suggesting healthy coping strategies to parents especially during the early period after learning their child's diagnosis.

Southeast Asian Parents Raising a Child with Autism

Luong, June., Yoder, Marian K., Canham, Daryl. (2009). Southeast Asian Parents Raising a Child with Autism: A Qualitative Investigation of Coping Styles. Journal of School Nursing, 25, 222-229.

This purpose of this article is to describe the coping styles of Southeast Asian parents, as previous studies about coping with autism have neglected to study the Southeast Asian population (Canham, Luong and Yoder, 2009, p. 224). A total of nine parents were identified, recruited, and then interviewed and given open-ended questions. These participants had children with autism aged 3-10 and displaying a moderate to severe level of disability. The researchers allowed participants to "open up" and tell stories rather than asking them to answer specific inquiries. They believed that this allowed a deeper exploration of the participants' thoughts and helped to uncover unknown phenomena (Canham et al., p. 224). The data analyzing process involved identifying common words, expressions, or actions, and then creating groups of patterns and themes. Nine coping styles were identified and organized into phases which sometimes overlapped. The phases were as follows: denial/passive coping, empowerment, redirecting energy, shifting of focus, rearranging life and relationships, changed expectations, social withdrawal, spiritual coping, acceptance. (Canham et al., 2009, p. 226-227). The research is limited by the sample size, and results cannot be generalized to all Southeast Asian American parents who are raising a child with autism. Nevertheless, the study is valuable as it provides insights into some of the coping styles, experiences and beliefs of Southeast Asian parents.

Family Perspectives

Family Perspectives On Raising A Child With Autism

Schall, Carol.(Dec 2000). Family perspectives on raising a child with autism: Journal of Child and Family Studies (9.4),409-423.

Within the comparison of families coping with autism and the various research that has been collected quantifying measurable data on the experiences of families of children with autism, there has not been much opportunity for families to tell their actual story and personal experiences. There are many families that have reported how difficult and unique raising an autistic child may be. In this article the author investigates the reasons and answers behind families involvement in raising a child of autism. The author provides the stories of 3 families with children suffering form ASD. (Schall, 2000, pg 409-410). The families are combined in this article and are similar in most ways to any middle class American family in which they have dreamed of having children, happy to find themselves expecting and made plans to welcome their new babies. Eventually the story begins to take a different toll when the families begin to notice that their child may be different. They described two different yet related processes. The experiences within the family (internal) are those that were shared by the family members and relate to how the family learns to cope with the disorder that their child has as well as the external experiences; which are those that the family shares when they interact with the outside world and immediate family. While these two sets of experiences are different and a part from each other, they actually intertwine as the family moves from confusion to hope (Schall, 2000, pg 410). For the help of your understanding and use of this article we ask you to pay close attention to the internal experiences of these families. These internal experiences feature many stressors, and coping strategies families have used in attempt to deal with the situation at hand.It also provides feedback on how the parents felt about the situations and the strong emotions they had been experiencing, in addition, information regarding whether or not they found themselves struggling or dealing positively with the internal challenges faced. Despite all of the troubles the families had dealt with, these families managed to cope with the intensity and all found ways to hold themselves together and remained dedicated to finding out whatever they could to benefit their child. (Schall, 2000, pg 411-414). The article also emphasizes the importance of families working together in creating strategies to support each other by “taking breaks, so that one person was on and one person was off”. This effective strategy gave the person who was off time to rejuvenate, reconstruct and have time for themselves in taking a break. (Schall, 2000, pg 419). The last internal experience that was examined focused on the "hope" that grew, and uplifted families over time. Overall they had stated they had grew different in their lives, it gave them meaning, passion and it changed their perspective on life, that they would not have had without their child with autism. (Schall, 2000, pg 420) This aspect, I find extremely interesting as this scene of hope seems to be the main trend that helps these parents strive under the difficult situation of having a child with Autism spectrum Disorder. Highlighting the aspect of hope, along with other coping strategies outlined in this article may benefit you when writing you entry as it shines some light on the difficulty associated with having a child with ASD.

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Personal Perspective on Children with Disabilities

Parenting A Child With Disabilities

Crown, N.J.(Jan-Mar2009). Parenting a child with disabilities: Personal reflections: Journal of Infant, Child & Adolescent Psychotherapy.(8.1), 70-82.

Within the integrated research of autism and families, the majority of studies have shown supplementary information on the emphasis of mothers raising a child with disabilities rather than fathers, siblings, and other care givers. In addition to your inquiry question you might want to consider looking at the article presented, regarding the numerous experiences a mother of a child with disabilities may have to endure. A mother in the article describes her 23 year old daughter as having several developmental disabilities along the Autism Spectrum, and how these behaviours can be overwhelming. It also describes the difficulty of absorbing the sense of “blow” that may be experienced when realizing that your child has a disability (Crown, 2009, pg 73). This includes experiencing feelings of grief and loss, along with anger pertaining to the sheer weight of work, care and support associated with being the primary caregiver of a child with disabilities (Crown, 2009, pg 71). The author articulates the idea of parents going through “phases” as their child with special needs develops. This article presents some common phases parents may experience; Dread and Uncertainty, Diagnosis, Adaptation and Recovery and finally Transformation. Under each phase, the article describes in detail the feelings parents have reported experiencing when going through the phase and how it helped them cope, or produce more negative feelings. The author states that once parents find their inner balance, most become devoted to helping their child and can pursue any goal. The energy, creativity, persistence and effort parents put forth under these circumstances of dealing with their children with disabilities are astonishing. You may want to consider the four phases that parents and mothers have gone through with overcoming their children’s disabilities, in helping you get a better understanding of the specific challenges and feelings parents may experience as their child with autism grows.

Supplementary Material

Web Site - Health Canada

As outlined in many of the research materials, understanding a child with Autism is an important aspect in helping families cope with the stressors associated with it. The Health Canada website linked above has a very clear definition of Autism, along with signs, and symptoms if a parent suspects a child may have ASD, information regarding the diagnostic and treatment, as well as information on the Canadian government’s role when looking at Autism and links where parents could find more information on the disorder, get help, and locate Autism organizations.

Video - Helping Hands Autism Support Group

This video incorporates one of the many support groups for parents who are seeking help and in need of additional support from working with other families that have autistic children. This video represents an external coping plan that parents can use to indulge in their differences and experiences by opening up to the community and recieving support.

Video - Grandparents and Autism

This video highlights a different view of families coping with autism. Beyond the parental, maternal and sibling aspects, grandparents are shown to aid within the experience of autism in families. Autism Researchers states relatives close to the families of autistic children have an extreme influential impact on the child of autism. Grandparents more importantly were surveyed to having significant care giving roles to financing that were helpful and beneficial to the families of autistic children. Beyond statics they had more profound love for their grandchildren of autism.

Newspaper - The "Swamp" of Autism: A Challenged Marriage and a Child Without a Voice

This article is about parents of an autistic daughter Carly, who is 17 years old has no production of voice creates challenges and life altering breakthroughs in which her parents are surprised in leading her father Arthur Fleischmann to writing a memoir called. Carly’s Voice: Break Through Autism. The parents of Carly have not only gone through difficult tasks in overcoming the developmental skills of Carly but there was also strain towards their marriage that lead to extreme challenges. One parent had the notion of undergoing suicidal interventions and also gone through depression and was also facing serious health conditions of cancer. The couple presented a straightforward truth about the challenges in their relationship, they are also a remarkable testament to the commitment and love some parents have for their autistic daughter. The book of which Arthur Fleischman decided to write upon of his daughter Carly, was to help others understand the challenges of autism and the importance of understanding and having hope.

Conclusion

As you can see, within the family of a child with autism there are several perspectives, each perspective associated with different challenges and coping strategies. We feel that we have covered the vast majority of known challenges and coping strategies in great detail with the variety of books, journal articles, dissertations, videos, newspapers and images provided. We've also provided information about the effects of religion (including positive & negative religious coping), and the challenges and coping strategies that exist within an assortment of cultures. We're confident that the accuracy and variety of sources provided will aid you in writing an exceptional article, an article that we know will help therapists and clinicians as they treat families who are raising a child with autism. Thanks for the opportunity and good luck.
K, Ni, S, J, & Na


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