DISSERTATION DEVELOPMENT 1
DISSERTATION DEVELOPMENT 3
College of Doctoral Studies, Grand Canyon University
RES820A: The Literature Landscape: Organizational Leadership
March 23, 2022,
How Autism Effect the Family and the Parents in Denial
Dietz, P. M., Rose, C. E., McArthur, D., & Maenner, M. (2020). National and state estimates of adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 50(12), 4258-4266.DOI: 10.1007/s10803-020-04494-4
The article aimed at assessing the number if adults 18-84 years who are living with autism spectrum disorder since there is lack of a surveillance system for monitoring the number of adults living with the condition. The study studied prevalence rates at both the state and federal levels. This is helpful in the development if surveillance systems that would help to determine the need for diagnosing and offering services to unidentified members of the population. The findings of this article are important for this study because it would help establish prevalence rates of ASD, which are not well-known. This would help inform what measures should be adopted in evaluating how people can be affected by autism. Such information would be important for the research topic because it aims at evaluating how autism affects families and parents in denial. Knowing prevalence of autism would be important when evaluating how families and parents in denial by the condition.
The review aimed to subjectively layout how the local area, family, and medical services frameworks go about as hindrances to the early finding of mental imbalance range jumble in kids. A phenomenological subjective methodology was taken while assessing moms’ encounters for getting ASD treatment for their Children.The main barriers to receiving ASD treatment resulted in the lack of knowledge and perception among parents, unidentified pathways to healthcare in healthcare systems, and structural and process barriers. Family denial and stigma surrounding mental health and financial constraints were also identified. The article concludes that institutional policies can be addressed through promotion of education among families about ASD, addressing procedural barriers, and offering support for parents with children at risk of ASD. This article is important to the dissertation topic because unmasks some factors are liked with increased denial of ASD condition. The article provides important insights that would be crucial in the development of the study.
Magalhães, J. M., Rodrigues, T. A., Neta, M. M. R., Damasceno, C. K. C. S., Sousa, K. H. J. F., & Arisawa, E. Â. L. S. (2021). Experiences of family members of children diagnosed with autism spectrum disorder. Revista Gaúcha de Enfermagem, 42. DOI:
The purpose of the study was to evaluate mother’s perceptions, and experience that have lived by families when caring for children with autism spectrum disorder. The study interviewed 20 mothers with children who was diagnosed with autism spectrum disorder in Teresina-Piaui, in Brazil. The findings indicated that families have mixed reactions ranging from denial to acceptance. Families are also exposed to sadness realizing that the condition cannot be cured, and more families are faced with denial when learning on adaptation requirements needed to support their children. Therefore, families should not only learn about structural factors, but also emotional support aspects of the program. These findings are very important when addressing the topic under consideration since it gives an overview of the state of affairs among families with children who have autism spectrum disorder. The findings would be instrumental in trying to create an interface between needed support and perceived denial.
Lamba, N., Van Tonder, A., Shrivastava, A., & Raghavan, A. (2022). Exploring challenges and support structures of mothers with children with Autism Spectrum Disorder in the United Arab Emirates. Research in developmental disabilities, 120, 104138. DOI:
The review pointed toward assessing the difficulties and backing structures for moms of kids with ASD. Mothers are the primary caregivers, but at the same time experience high stress levels, although their experience is not well-known. Mothers aged 33-58 years were consulted with respect to finding, restorative intercessions, encouraging group of people, and pandemic. Findings indicates lack of necessary information to help them seek the correct diagnosis. Moreover, most mothers are forced to take care of their children without a support system from their families, and experience many challenges during pandemic. This contributes to their feeling rejected from their families. However, exposure to support groups that informed them on how they can help their children improved their satisfaction. These findings are important for the study topic because they help propose strategies that can be adopted to reduce denial and promote embracing these children to improve their well-being. Acceptance of children with ASD is dependent on existence of the necessary support networks, which would address stresses faced by parents and potential denial.
Kang-Yi, C. D., Grinker, R. R., Beidas, R., Agha, A., Russell, R., Shah, S. B., … & Mandell, D. S. (2018). Influence of community-level cultural beliefs about autism on families’ and professionals’ care for children. Transcultural psychiatry, 55(5), 623-647. Doi:
The objective of the study was to find out how community-level cultural beliefs affect families and ASD care for children with developmental delays among immigrant communities as a step towards identification and timely access to services. The study was conducted in New York City and targeted Korean American communities using an inductive approach to identify concepts and categories associated with autism. The study established that the factors that influence ability to access the correct care for children with autism included stigma, discomfort and discrimination. These factors influence the ability of this community to access the right autism care. The findings of this community are important for the research topic because cultural and community perceptions are some factors that influence the ability of families and children accessing the appropriate care for children with autism. The study informs the research topic in availing evidence why most of the parents and families live in denial about children with autism.
Gentles, S. J., Nicholas, D. B., Jack, S. M., McKibbon, K. A., & Szatmari, P. (2020). Coming to understand the child has autism: A process illustrating parents’ evolving readiness for engaging in care. Autism, 24(2), 470-483.
The purpose of this study was to assess how parents came to understand their children had autism and conforming the appropriate care. The study also presents findings on how parents are engaged and get prepared to offer help to their children at this early stage. Information was gathered from 45 meetings with 32 moms and 9 specialists’ experts from metropolitan and rustic areas of Ontario in Canada. The findings indicate that parent’s motivation and readiness for engagement is dependent on an individual rate. Most parents explained that they were hesitant to access the right care, and had to time to confirm the difference and whether the disease was autism before they could access care. These findings are instrumental for the research topic since it offers varied perspective on how parent take the autism and how it influences their acceptance of the disease on the first account. It helps establish how parents engage and get used to the fact that their child has autism.
Pearson, J. N., Meadan, H., Malone, K. M., & Martin, B. M. (2020). Parent and professional experiences supporting African-American children with autism. Journal of Racial and Ethnic Health Disparities, 7(2), 305-315. DOI: 10.1007/s40615-019-00659-9
The examination was led with the target of assessing the experience of guardians and experts supporting African American children with autism. The care for children with autism has stabilized in the US and children are able to access autism care as early as two years, but African American children have not been able to access the desired level of care. Findings indicates that both parents and professionals face similar factors a most being a few facilitators to accessing services and also faced similar barriers about timely access to quality autism care services. Due to such barriers, parents find it difficult to seek autism care services and are likely to live in denial of the reality their child has autism. This research is important to the study topic since it highlights some the factors that may influence parents to live in denial and fail to access the right care for their children.
Gordillo, M. L., Chu, A., & Long, K. (2020). Mothers’ adjustment to autism: exploring the roles of autism knowledge and culture. Journal of Pediatric Psychology, 45(8), 877-886.
The study explored the relationship between culture and service-use barriers among culturally diverse mothers of children with ASD. The study involved in the semi-structure qualitative interview about their experience with ASD, and thematic analysis used to analyze the data collected. The results indicated that mothers had similar gains if knowledge was available and their children had access to care, and they felt empowered by availability of knowledge, but still there were difficulties about utilizing the knowledge to identify children specific needs. The study further established that cultural-based stigma against ASD such as rejection from the community were among the factors that stimulated denial and lack of belief that mothers had about the conditions of their child being treatable. The findings are instrumental to building the effect of autism on parents with denial, but educational programs addressing informational and cultural needs may help in addressing the existing cultural disparities about diagnosis of ASD.
Rabba, A. S., Dissanayake, C., & Barbaro, J. (2019). Parents’ experiences of an early autism diagnosis: Insights into their needs. Research in Autism Spectrum Disorders, 66, 101415.
The objective of the research was to investigate parental needs when their children have early ASD diagnosis. The study focused on 13 mothers and fathers who had a child less than 36 months diagnosed with autism based on semi-structured interviews and focus groups. Based on thematic analysis, four themes were identified; emotional response to diagnosis, ability for managing uncertainties after diagnosis, availability of resources, and ability to share diagnosis. If a child has an early diagnosis, various emotions are stimulated and eventually influence their coping. The findings have important implications on the study topic, since they open to new facts that can be used to determine how autism affects parents living with denial. Moreover, it forms basis for formulation of strategies that can be used to address factors that may lead to delayed access to care, which may cause long-term health consequences on the child. Getting information about early diagnosis is important to timely diagnosis.
Papoudi, D., Jørgensen, C. R., Guldberg, K., & Meadan, H. (2021). Perceptions, experiences, and needs of parents of culturally and linguistically diverse children with autism: a scoping review. Review Journal of Autism and Developmental Disorders, 8(2), 195-212.
The study provided a review of research articles from the United Kingdom and the United States. The objective was to establish the perceptions, experiences, and culturally diverse families of children with autism. 32 articles were selected out of which 25 were from the United States and 7 from the United Kingdom. The review recognized four subjects about information and conviction about chemical imbalance, chemical imbalance and everyday life, family encounters with getting to administrations and backing, and multi-language. The findings indicated that family perception about the lack of knowledge and experiences like social stigma and service unavailability. Recommendations such as provision of culturally sensitive strategies, availing information in diverse languages and promotion of parent-professional collaboration would go a long way in promotion of service access among parents. Findings indicate that autism does not necessarily influence one’s perception, but to a large extent it’s a lack of information and support services which would help understand the context of the study topic.
The article highlights the experiences of families of children with autism spectrum disorder. There has been increased awareness of the need to offer services for children with autism. While access to service for children with this condition is important, it is equally important to recognize the family functioning of the children receiving this care and the outcome. The article indicates the importance of understanding the range of stressing factors that families are exposed to including family systems, family values, cultural beliefs and priorities. The primary objective of this article was to evaluate these factors in order to understand how they affect family systems so that it can be easier to use family perspectives to address the complex needs facing the families and children with autism. The article provides important insights that would be significant in understanding some motivations towards family denial of children living with autism spectrum disorder.
Zuckerman, K. E., Sinche, B., Cobian, M., Cervantes, M., Mejia, A., Becker, T., & Nicolaidis, C. (2014). Conceptualization of autism in the Latino community and its relationship with early diagnosis. Journal of developmental and behavioral pediatrics: JDBP, 35(8), 522. Doi:
The article focused on subjectively understanding the conceptualization of ASD inside the Latino people group to get existing obstructions to early findings. Five center gatherings and four subjective meetings were with 30 guardians occupied with Oregon. Most of the families had no knowledge about autism. Many believed that some symptoms of ASD were associated with family dysfunctions. Some concerns that were raised by parents included communication of the providers and access to language services. Parents with children with developmental delays were likely to face rejection, embarrassment, and children were perceived as a burden to the family. As a result, parents were less likely to seek medical services with providers. The findings of this research study are important to understanding what factors influence parents’ failure to seek medical services for their children if they have autism spectrum disorder. The findings that parental denial is usually associated with cultural beliefs is critical to the development of this research study.
Altiere, M. J., & von Kluge, S. (2009). Searching for acceptance: Challenges encountered while raising a child with autism. Journal of intellectual and developmental disability, 34(2), 142-152.
The study was conducted with the aim of establishing the challenges that families goes through when raising children with autism. The review drew in 52 guardians of youngsters with autism spectrum disorder, who were consulted to figure out their battles and triumphs. The discoveries showed five obvious difficulties among these families including improvement, addressing, obliteration, arrangements, and development. The findings further indicated that parents experienced confusion as a result of behavioral presentation of children when they realized their children had autism. However, the findings also indicate the willingness of parents to support their children in whatever possible way. Although there are challenges experienced when raising a child with autism, there were positive experiences that were notable. The article gives important insights that are applicable by families and professionals in order to ensure services are availed to the children that need them. This would help avoid perceived denial by families of children with autism.
Rebeiro, M. J., Azad, S. A. K., & Mahmud, A. Y. (2019). Psychological service needs of parents in the management of ASD. Bioresearch Communications-(BRC), 5(2), 744-749.
The research study was aimed at establishing psychological services that are needed by parents of children with ASD between the age of 4-12 years. Twenty-seven parents of children with Austin were the caregivers who participated in the study, and were selected in a special children school. Information assortment was through interviews, while the seriousness of the downturn and uneasiness were gathered utilizing psychometric instruments. The outcomes demonstrated that guardians with ASD experienced shifting levels of nervousness that went from gentle to serious. The results additionally show that the vast majority of the guardians likewise experienced gentle to extreme degrees of depression. Parents also demonstrated communication, behavioral and cognitive disturbances as notable among children with ASD. These problems indicated the need for psychological services among these parents for them to seek appropriate services and support for their children. These findings are instrumental to understanding reasons why parents are unable to seek the needed services and support when they realize their children have autism. Moreover, children also need psychological services for them to learn appropriate skills such as behavior, communication and cognitive developments.
Brewer, A. (2018). “We were on our own”: Mothers’ experiences navigating the fragmented system of professional care for autism. Social Science & Medicine, 215, 61-68.
The article explains the sacrifices that mothers have to take in order to take care of their children with autism. Information from 620 guardians of medically introverted youngsters was locked in to investigate their encounters with the divided arrangement of expert consideration. The discoveries propose that drawing in with treatment for youngsters sent such families into the disarray of conclusion and treatment. Since the assistance framework is divided into clinical and school systems guardians were battling to track down complete proficient consideration as suggested by research associations. Due to the demanding state of children care systems, parents gave up their work commitments in order to offer the necessary support for their children. However, such moves had implications on their families, which is why families may tend to overlook their children with autism to maintain their incomes. These factors coupled with low socioeconomic status had a negative implication on the ability of parents to offer support for their autistic children, which could explain perceived denial.
Pozo, P., Sarriá, E., & Brioso, A. (2014). Family quality of life and psychological well‐being in parents of children with autism spectrum disorders: a double ABCX model. Journal of Intellectual Disability Research, 58(5), 442-458.
The article examined the family quality of life and psychological well-being based on multidimensional perspectives based on ABCX model, with severity of disorder, behavioral problems, social support, sense of coherence, and strategies for coping. A sample of 118 parents who had children with autism were involved and quality of life analyzed between mothers and fathers. The result of the study indicates that having behavioral problems will have negative effects on adaptation of parents. The existence of support for both mothers and fathers had significant impact on family quality of life. There was a connection between survival techniques and variation, dynamic aversion adapting for fathers, and positive and issue-centered adaptation to moms’ mental well-being. The article is relevant in the research topic because it highlights family quality of life and coping strategies and coping strategies as critical in understanding how families with autistic children are affected, which is linked to other psychological and behavioral consequences.
Moorcroft, A., Scarinci, N., & Meyer, C. (2020). ‘We were just kind of handed it and then it was smoke bombed by everyone’: How do external stakeholders contribute to parent rejection and the abandonment of AAC systems?. International Journal of Language & Communication Disorders, 55(1), 59-69.
The study was based on evaluation of parents’ perception about the contribution of stakeholders towards rejection in the augmentative and alternative communication (AAC) system. Semi-structured interviews were conducted with 12 parents who had rejected or abandoned the AAC system that has been recommended for their children, then data relating to the role of external stakeholders extracted from the transcriptions, and a thematic analysis conducted. The findings indicated four themes relating to the role of stakeholders in parents’ rejection and abandonment of the AAC system. The findings indicated that parents were influenced by attitudes and experiences of professionals, they felt unsupported by SLP, communication with stakeholders was ineffective, and difficulties using AAC without support of the external stakeholders. The study is important for the research topic because it highlights the importance of offering family-centered support programs to avoid family failing to seek needed support for their children which would promote their well-being and awareness.
The study was based on literally review of studies evaluating experiences of stigma among parents of children with autism. Systematic literature search was conducted to find the right research articles, and two independent reviewers mandated with the screening of the articles, and then identified articles classified based on sociocultural setting. Evaluation of the articles selected indicated that parents were exposed to courtesy stigma, which eventually developed into affiliate stigma. The findings also indicated lack of adequate attention on subject of stigma associated with parents of children with stigma. Parents of children with autism were affected by stigma, which was associated with severity of behavior. Some factors associated with failure of seeking the necessary help for children with autism is linked to lack of systems that could evaluate parent’s exposure to stigma. This could explain some factors that affect parents of children with autism disorder, and consequential denial related to the condition.
Bozkurt, G., Uysal, G., & Düzkaya, D. S. (2019). Examination of care burden and stress coping styles of parents of children with Autism Spectrum Disorder. Journal of pediatric nursing, 47, 142-147.
The point of the review was to inspect the guardian burden and stress survival techniques for guardians of youngsters with chemical imbalance range jumble (ASD). 131 children with ASD from a private education center in Istanbul were involved and data was collected using questionnaires prepared by the researcher. The examination discoveries shows that guardians of kids with ASD had higher weight of care; nonetheless, the weight of care was higher for guardians with a solitary kid contrasted with guardians with more youngsters, and contrasts was likewise prominent for guardians with little girls contrasted with children Mothers were more likely to seek social support compared to fathers. These findings have an implication in the study topic because it highlights the important role-played by the caregiver or the parent. Whether to seek social support or any other form of intervention is dependent on the parent’s willingness to mitigate the burden of care for children with autism.
Salimi, M., Mahdavi, A., Yeghaneh, S. S., Abedin, M., & Hajhosseini, M. (2019). The effectiveness of group-based acceptance and commitment therapy (ACT) on emotion cognitive regulation strategies in mothers of children with autism spectrum. Maedica, 14(3), 240. Doi:
The article investigates the importance of group-based acceptance and commitment therapy on cognitive emotion regulation strategies in mothers of children with autism. The study was quasi-experiment with a pretest and post-test control group. Mothers of children with autism spectrum disorder participated in the study, and a random sample of 30 mothers was selected and assigned experimental and control groups. The participants responded to the cognitive emotion questionnaire, and data analyzed using co variance analysis. Results indicated that group-based acceptance and commitment had significant effect on planning strategy. The study indicates that planning therapy centers can adopt group-based and acceptance therapy as a way of improving cognitive emotions regulatory strategy for mothers of children with autism. The study findings are significant to the study because autism affects people different, and engaging them as a group can achieve results they could not achieve when such measures are adopted as a group.
My degree program is Doctor of Education in Organizational Leadership specializing in special education.
The topic aligns with the study area in that organizational leadership is important for leading a learning institution, while understanding special education is important to offering quality education to learners with autism.
Feasibility of Research Problem
Most studies have focused on psychological implications that parents suffered when they realized their children had autism, but no study has described how autism affects families and parents living in denial.
Based on what is known in literature, autism has serious psychological effects on parents when they realize their children has autism, what needs to be understood how autism affects families and parents living in denial.
Need for Study
The effects of autism in families have been identified to be diverse. Many studies have focused on evaluating the consequences of parents realizing their children had autism. Moreover, psychological consequences of autism have been identified among parents of children with autism. Despite many researches providing evidence that autism causes stress and anxiety among families, there are still many knowledge gaps that are yet to be filled. The objective of this study is to establish the effects of autism on families and parents living in denial. Many care professionals have tried their best in addressing the psychol