Developmental challenges

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Autism Developmental Abnormalities and Their Impact on Families

Autism developmental abnormalities can cause additional challenges in the family and even society in which a kid is born. Families usually expect that their children will be born and develop normally, without displaying any unusual qualities that would be cause for concern. However, when this hope and expectation of normal developmental advancement is disappointed and a kid demonstrates developmental delays and deficiencies, it ripples into family difficulties that have been explored and documented pretty well. It is consequently critical to comprehend the secondary and tertiary ramifications of having a kid or children with developmental problems in a family. This is in order to comprehend the challenges that families, caregivers, and society at large grapple with attending to the needs of such children. Defining ASD entails the wide range of developmental delays that symptomize growth advancement in a child that is not normal. These may be in terms of impairments in ability, personality formation, socialization, behavior consistency, and even communication. Given the needs that such symptoms in a child call for to enable a child to overcome and live a near-normal life, families, caregivers, and society as a whole are left to bear a heavy burden. It is therefore important to define the nature of this burden and its effects as redacted from various literature resources that have taken an interest in the issue.

The Stress of Parenting a Child with ASD

Pisula (2011) discusses the stress that mothers and fathers of children with ASD have to undergo in parenting. He shows how ASD can be a real source of parental stress for the mother and father and this helps to depict one facet of the burden that ASD is to families. In the text, aspects about ASD are described in terms of how they precipitate stress to parents. First is what is referred to as child characteristics that are epitomized by the problems and challenges that a child portrays as a result of Autism. Second, parents often times do not have timely access to professional support, especially in the early stages following the discovery of the condition. Thirdly, the social attitudes that persons or children with autism are shown due to a lack of societal understanding of the problems that they and their families deal with. From the resource, it comes out clear that most of the mothers and fathers of children with ASD experience stress as they try to either come to terms with the diagnosis and the reality of the extra mile they have to go to attend to the needs of the child. The symptoms that a child expresses are usually strange and parents are usually the first to be caught by surprise as to how they will have to cope. Most of them feel that after the diagnosis, their lives change and how to deal with the change sometimes needs support for them to understand which support, according to this author, is not always readily available.

Caregiver Burden and its Impact on the Family

Roper et al. (2014) describe caregiver burden in explaining the ripple effect of ASD among other disabilities and abnormalities. They define caregiver burden as the perception of those in charge of persons with developmental challenges as the way they have adversely been affected due to the overbearing obligations emanating from provision of care to ASD persons or children. By extension, the study by the authors sought to describe the types of family relationships that happen in families with persons or children with special needs. The findings suggest that most of the parents in the study sample relate experiences of hardship in coping with parenting responsibilities. The parents that described enormous parenting burden also showed that the sibling relationships in their families were negative. This study helps to depict how parents view parenting responsibilities either as a stressor or something enjoyable depending on whether the family has the presence of any special-needs or ASD person or child. By inference, the study suggests that the presence of an ASD child or person in the family may lead to negative perceptions about parenting as well as lead to non-filial sibling relations. The resource indicates that with increased caregiver burden, time for cultivation of filial sibling subsystem is reduced which breeds negativity and division.

The Impact of ASD on Family Dynamics

Hartmann (2012) shows how a family can in its wider sense always respond to the news of ASD as a shocker. The author describes the news of a child being an ASD case to be perceived as a sheer loss for the family. If such news is broken at the birth of a baby, the author says that the parents have a period of grief as the child they expected has to in their imaginations and anticipations die simultaneously with the process of trying to accept the reality staring at them of the birth of an "imperfect" baby that they did not expect. The text relates the feeling of embarrassment among siblings for having a sister or brother who exhibits abnormal behaviors. This makes them hate the idea of attending to them, being uncomfortable having them in their company while going out and sometimes, jealous sets in as to the amount of attention and time spent on the ASD child. Besides, siblings may also be depressed as they agonize over the stress of their parents in caring for their sibling. Trying to ensure a normal upbringing, education, and teaching the kid some essential skills in order to reduce their dependence all send ripple effects on the functioning of the family unit. Family trips now need extra planning, household budgets expand and this overstretches the emotional fabric in the family and without assistance, it has a negative net effect. The study extends to cover the treatment of the situation by adult versus adolescent scenarios and their involvement with the ASD person. It even encompasses grandparents and the entire extended family circle to show perceptions towards the kid and this demonstrates what a concern and a source of worry an ASD case is when it happens to a family.

The Influence of Culture on the Perception of ASD

The necessity for a comparative analysis of contexts is filled by the study by Zeleke et al. (2017). ASD is a worldwide problem and the way it is handled is also based on the various cultural factors in different contexts. The Ethiopian case studied in this source draws a picture of the vast African continent. The authors in their findings say that cultural influences predispose families and society at large to view children born with abnormalities with stigma. They have associations of such conditions with bad omen and as such, families have a harder time adjusting to the reality and gathering the confidence to set out and to seek professional assistance. The source is essential in contrasting the western context with the more culturally bound African one. In the west, decisions with regard to reproductive health and family are squarely in the control of parents. This is not the case in Africa or most other traditional contexts where a family is solidly a sub-unity of the larger community life. The community therefore plays a major role in the perception towards ASD children or those born with other abnormalities. It is only families that have parents that are educated that have information with regard to the assistance that can be availed to help in the handling of children with autism. However, even with them, it is still hard to face the situation and confront society with a child of their condition. It is a bigger stressor given the negative explanations of causes of abnormalities and families have to have enough courage in order to rise above the stigma and seek assistance to enable the child to survive.

Parental Involvement in Education and Care for ASD Children

Garbacz et al. (2016) describe the involvement of parents in the enhancement of parent-teacher relationships. It reflects on the extent of the burden on the family or parents as an essential predictor of involvement of a parent in the educational milestones of an ASD child. For instance, when a family having been shocked by the birth of an ASD kid does not get assistance in caring for the kid then the initial perception of the parents is that there is not much hope for the child. Some think that the survival of the kid is left to luck and that therefore it is pointless to struggle to help a failing course. Conversely, when a family gets assistance and is enlightened on the services available or options to help their ASD child, it helps them adjust their perceptions to avoid concluding that they cannot help it. The authors of the text content therefore that when services are available from early on in the life of an ASD child, it may trigger parents to be more involved in other efforts to help their child. This includes taking the initiative to support the educational advancement of the child. When the negative perceptions about the burden of caregiving to an ASD child have been overcome, the parent is able to take up their role as the major coordinator of the various services that their child has to receive and this includes being actively involved in enabling a parent-teacher relationship for the benefit of the child.

The Impact of ASD on Marital Satisfaction

Hartley et al. (2012) discuss a different facet of the burden that ASD is on family life. They consider the way that behavioral symptoms of an ASD child impact on marital satisfaction. This is due to the fact that children with ASD depict different behavioral and physical manifestations that vary and exert pressure on the family and on matrimony. In this study, the physiological toll that the needs of an ASD child takes on the mother has implications on her concentration in marriage. Upon getting such a child, life changes and whenever the mother is burdened in attending to the child, they become preoccupied such as to ignore other matrimonial obligations. In some instances, when the child needs certain care and is not provided, it becomes a cause of blame among a couple which also reduces marital satisfaction. In the study, it is noted with concern that when there are fluctuations in the behavioral characteristics of an ASD child, it creates anxiety and this increases the level of stress in the family rippling to adverse effects on marital satisfaction. However, stress is reduced when behavioral manifestations are not fluctuating as parents become accustomed to ASD characteristics. The study hence establishes the health and well-being of children as having a bearing on marital satisfaction either directly or indirectly.

Delayed Development and Child-Parent Conflicts

Marquis et al. (2010) explore how conditions that lead to delayed development such as ASD may be predictors of future child-parent conflicts. Essentially, the authors look at the longitudinal consequences of conditions that have comprehensive effects on the growth and development of a child on their compliance as children, adolescents, and even adults. It has to be highlighted that children with delayed development if not well cared for may start life on a negative perception that the world around them is unfair to them. They look at themselves and in the course of processing their difference with other normal students may be bitter towards parents who themselves also continue to adjust to the developmental crises in their child. This occasions a sort of two forces that depending on how the situation is handled may be at war with each other. Imagining a child with delayed development due to ASD looking back and seeing the opportunities he missed or the inabilities as compared to others, they may be inclined to blame the parents for their predicaments. In the spirit of the authors, the study proposes the hypothesis that conditions that lead to delayed development in themselves have the power to precipitate parent-child conflict if various factors are not put under control.

The Longitudinal Challenges of ASD on Families

Gray (2002) presents yet another longitudinal study of families with autism children in terms of how they adjust. In this case, the author shows cognizance of the negative perceptions and stigmatization that children with autism initially receive both by immediate family and non-family members. In studying the condition longitudinally, the author observes the trend among families to continually advance on a pattern of adaptation on the one hand and the debilitating tenacity of ASD to mete distress and agony as a child meets new developmental challenges across their phases of growth in life. A review of this literature arouses the question of whether a family is really able to completely overcome the challenges of autism given their metamorphosing nature across the stages of life. In the results, the author observes that besides distress that often translates to health problems among parents and caregivers, such other issues are associated with caring for an ASD child such as career adjustment. In some instances, caring for the child makes it impossible for mothers to at all keep certain careers and they have to quit. However, the study does offer relieving findings that suggest that the condition of a family years later can be found to be better than when autism is first diagnosed. Families resort to various coping strategies and tend to get less worried as the years go by. However, this does not portray the situation for all families as for some, children grow and display violent behavior and hence causing more distress than when they were young and less energetic and hence easier to manage.

Emotional Responsiveness and Autism Risk

Lambert-Brown et al. (2015) discusses the correlational aspect of emotional responsiveness in the family with autism risk. In essence, the behavior or nature of a child after birth, especially their well-being and health, have a bearing on the preparedness of the mother to show affection towards them. The affection in this regard is indicated by the smiling frequency and reciprocity between mothers and their children. Typically, in the early stages of life, reciprocity in smiles is high until other factors swing into play. In this regard, when a parent has concerns about a child's developmental progress, she becomes distressed and this impacts on her reciprocity towards a child's emotional messages. Reduced or lack of reciprocity, according to the study and the literature referred to by the authors, enhances the risk for autism. It also aggravates the adverse effects of autism to the child, mother, caregivers, and the family as a whole.

Sibling Sleep and the Impact of ASD

Schwichtenberg et al. (2016) looks at sleep as one of the family aspects that autism impacts on. Understanding the net negative impact of autism on families requires wholesome consideration of every little aspect. This study focused on sibling sleep, essentially to understand how variations in sleep time, nighttime awakenings, and rise-ups in the morning explain family stress due to the presence of an autism person or child. While the study does not make clear inferences that show the burden on the family, it deduces facts regarding the clinical implications in studying family recordings and reporting by parents regarding sleep by siblings. This being the case, the study can be used to infer that sibling sleep has been a key area in the family that can change once an autism child comes. General alertness, wariness, and general concern explain the reason for recordings or early morning rise or time to time nighttime awakenings. Daytime weariness due to attending to the needs of the autism child are also explanations of early retirement to bed as well as an indication of withdrawal by siblings as a way of dealing with stress. However, the study recognizes weaknesses in the sample studied which limits its generalization. This is since in some families, no meaningful sleep pattern fluctuations could be recorded. This is the reason why various studies and literatures have to be together focusing on different family-life indicators in the light of ASD.

Conclusion

On the whole, this literature shows how families grapple with the problem of ASD. The presence of ASD in the family causes lifestyle change that impacts every aspect of interrelationship. The process of adjustment to ASD is marred with episodes of distress even as families grapple with accepting the condition as part of their life. The literature review has shown that marital satisfaction, family routines, and rituals are all impacted negatively upon getting a child with ASD. An autism problem, however, seems to have a self-perpetuating trend since it is a condition that a person has to live with their entire life. This means that every stage of life comes with new challenges and families never fully recover from it. Career life, especially for mothers, is rendered tedious and this necessitates provision of community assistance to these families. Plans have to be made to assist the families early enough before the way of life of families is completely overhauled due to this condition and turned upside down.

Reference

Garbacz, S. A., McIntyre, L. L., & Santiago, R. T. (2016). Family involvement and parent- teacher relationships for students with autism spectrum disorders. School Psychology Quarterly, 31(4), 478.

Gray, D. E. (2002). Ten years on: A longitudinal study of families of children with autism. Journal of Intellectual and Developmental Disability, 27(3), 215-222.

Hartley, S. L., Barker, E. T., Baker, J. K., Seltzer, M. M., & Greenberg, J. S. (2012). Marital satisfaction and life circumstances of grown children with autism across 7 years. Journal of Family Psychology, 26(5), 688.

Hartmann, A. (2012). Autism and its impact on families.

Lambert-Brown, B. L., McDonald, N. M., Mattson, W. I., Martin, K. B., Ibañez, L. V., Stone, W. L., & Messinger, D. S. (2015). Positive emotional engagement and autism risk. Developmental psychology, 51(6), 848.

Marquis, W. A., Noroña, A. N., & Baker, B. L. (2017). Developmental delay and emotion dysregulation: Predicting parent-child conflict across early to middle childhood. Journal of Family Psychology, 31(3), 327.

Pisula, E. (2011). Parenting stress in mothers and fathers of children with autism spectrum disorders. In A comprehensive book on autism spectrum disorders. InTech.

Roper, S. O., Allred, D. W., Mandleco, B., Freeborn, D., & Dyches, T. (2014). Caregiver burden and sibling relationships in families raising children with disabilities and typically developing children. Families, Systems, & Health, 32(2), 241.

Schwichtenberg, A. J., Hensle, T., Honaker, S., Miller, M., Ozonoff, S., & Anders, T. (2016). Sibling sleep-What can it tell us about parental sleep reports in the context of autism?. Clinical practice in pediatric psychology, 4(2), 137.

Zeleke, W. A., Hughes, T., & Chitiyo, M. (2017). The Path to an Autism Spectrum Disorders Diagnosis in Ethiopia: Parent Perspective. The American journal of orthopsychiatry.

April 19, 2023
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Health Sociology

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Illness Hero

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Autism Challenges Society

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