Living with children diagnosed with autistic spectrum disorder: parental and professional views (original) (raw)
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Living with children diagnosed with Autism Spectrum Disorder: Parental and professional views
The number of children diagnosed with an autistic spectrum disorder (ASD) is rising and is now thought to be as high as 1:100. While the debate about best treatment continues, the effects of having a child diagnosed with ASD on family life remain relatively unexplored. This article, by Karola Dillenburger of Queens University Belfast, Mickey Keenan of the University of Ulster, Alvin Doherty from the Health Service Executive Western Region, Tony Byrne of Parents' Education as Autism Therapists (PEAT) and Stephen Gallagher of the University of Ulster, sets out to adjust that balance. Drawing upon data from a comprehensive study of parental needs, these authors argue that parental and professional views do not always concur; that families make extraordinary sacrifices; that siblings are affected; and that parents are under tremendous stress. Parents argue that educational and social service supports are not efficient and that they are forced to rely largely on support from within the family or from friends. In particular, some important differences between parental and professional perceptions became apparent in relation to interventions based on Applied Behaviour Analysis (ABA). The authors of this article propose that these differences need to be taken seriously by teachers and other professionals as well as by policy-makers.
Applied behaviour analysis (ABA)-based programmes are endorsed as the gold standard for treatment of children with autistic spectrum disorder (ASD) in most of North America. This is not the case in most of Europe, where instead a non-specified 'eclectic' approach is adopted. We explored the social validity of ABA-based interventions with 15 European families who had experience with home-based, mainly self-managed, ABA-based programmes for their own child/ren with ASD. The results of the study highlighted the overwhelmingly positive impact that ABA-based interventions had on their children in areas such as social skills, challenging behaviour, communication, gross and fine motor skills, concentration, interaction, independence, overall quality of life and, most importantly, a feeling of hope for the future. Implications for European policy on ASD are discussed.
Challenges Faced by families of Autistic Children
2014
Autism Spectrum Disorders (ASD) is a complex neurological disorder that affects brain function which causes impairments in multiple areas of development including social interaction, communication, and behavior and typically appears within the first three years of life. Families having children with ASD face many challenges as the disorder is associated with disruptive antisocial behavior. Parents with ASD children face extreme difficulties in dealing with challenging behaviors, teaching their child to communicate, teaching basic life skills, guarding their child from danger, and preparing their child for adult life. Besides, such families also experience high levels of stress, high recurrence risks, misconceptions and assumptions, feelings of guilt and blame regarding child’s diagnosis. The social stigma attached to the disorder causes lot of discrimination not only of the autistic child but also of the family as a whole because the family is seen to be a part of the illness. The p...
The accurate diagnosis and subsequent advice and support for the parents of a child diagnosed with Autistic Spectrum Disorder (ASD) are crucial in ensuring that the child's specific needs are appropriately met, both before and after the child enters formal schooling. This article addresses three issues – difficulties experienced by such parents; their comprehension of autism and what is needed in order to cope effectively; and how professional intervention pertinent to School-Based Family Counseling (SBFC) can be of help. The first two issues are addressed through a qualitative research investigation, with data collected by means of personal interviews with parents. The results indicate that parents often do not initially understand the lifelong nature of autism; they do not know how to adjust their family lives to meet the needs of the autistic child and other children in the family; and they are often overwhelmed by how to manage their ASD child. Therefore they are in need of professional intervention. In addressing such need for professional help, this article considers how it can be provided through SBFC.
Support for Learning, 2012
The focus of the study was to explore parental experiences of raising a child with autistic spectrum disorder (ASD). A mixed-method approach consisting of questionnaires and semi-structured interviews was used in order to elicit parental perspectives of raising a child with ASD. Two semi-structured interviews were conducted with parents of children with ASD. Questionnaires were sent to parents of children with ASD in two special schools. The findings indicate that although each of the parents had a child with ASD, their experiences were all different. Many interesting accounts were documented and a wealth of information regarding the characteristic traits that children with ASD portray was recorded. The findings suggested that the majority of the parents experienced a low level of support from agencies and professionals. The general verdict was that of poor communication and a lack of understanding of parents' needs following formal diagnosis. Finally, a series of coping strategies were discovered ranging from family support to paid help.s ufl_1505 37..45
THE IMPACT OF AUTISM ON FAMILY WITH AUTISTIC CHILD
Dr Zeeshan Aslam, Dr Faisal Rasheed
Autism spectrum disorders (ASD) refers to a group of neurological disorders associated with a severe developmental disability and cause difficulties with communicating, thinking, and interacting with others. As a result, this condition results in difficulties meeting social, educational, occupational, and other important demands throughout one's entire life. Males are disproportionately affected by autism spectrum disorder (ASD), which is becoming more prevalent today. Estimates of ASD prevalence in the US ranged from 5.7 to 21.9 per 1,000 children aged eight years, according to the source. Autism is a very complicated disorder. A wide range of studies indicate that families with children face various challenges. It is one of these problems. Stress that parents endure because of an autistic child influences the family's well-being as a whole. The findings from this study showed that family involvement in the lives of children with ASD cannot be overemphasised. An easy way to help everyone in the family is to improve familial support, marriages, and social involvement. Parents of children with autism spectrum disorder may discover that they benefit from receiving supportive and positive social support. Increasing the adaptability of family members who are related to autistic children may benefit both parents, particularly the mother.
Frontiers in Education, 2023
Introduction: In 2014, changes to special educational needs and disability (SEND) legislation were introduced in England and Wales. These reforms aimed for young people and their families to receive the help and support they need, have a say regarding their support needs, and achieve better outcomes. Methods: We examine the views of parents of autistic young people (16-25 years) regarding the impact of the reforms, several years after their introduction. In total, 115 parents of autistic young people (16-25 years) in England and Wales took part in our research: 84 completed an online survey, one took part in an interview, and 30 participated in both the survey and interview. Quantitative data, collected via the online survey, were analyzed descriptively. Qualitative data, collected via the survey and interview, were analyzed using inductive thematic analysis. Results: Parents overwhelmingly reported that their experiences had not improved since the introduction of the SEND reforms. This experience impacted their own, and their children's, wellbeing. Parents felt that the reforms were simply delaying the inevitable, and there was still limited support for them or their children as they transitioned to adulthood. Discussion: Despite promises of a radically different system, and the potential of these reforms, parents reported that little had changed for them or their children since the introduction of the Children and Families Act. KEYWORDS autism, parents, policy, reform, post-16 education 1 We use identity-first (i.e., autistic) rather than person-first (i.e., with autism) language, as this is preferred by most autistic people in the United Kingdom (Kenny et al., 2016) and is less associated with stigma (Gernsbacher, 2017) and ableism (Bottema-Beutel et al., 2020).
Challenges and Coping Strategies for Parents with Autistic Children
Journal of Mental Disorders and Treatment, 2018
Studies so far look at the causes and cure for autism, however, little work has been done on the challenges parents of these children face in their upbringing. This study brought out the challenges that parents with autistic children face as well as the coping mechanisms these parents adopt in their quest to cater for their children. Semi structured interviews were used as a form of data collection. Prominent themes the study highlights is the challenges of parents, which was associated with the inability of the parents to have meaningful conversations with their children, the financial burden of taking care of them, stigmatization of their autistic children as well as themselves, and the demandingness of the autistic children. With these problems, parents in the study adapted to their situation by accepting the situation of their wards, depending on God for strength, receiving support and encouragement from some family members and friends, joining support groups, as well as taking leave from work to help their children seek proper medical care. Knowing the challenges parents with children with autism face would constitute grounds for support to be given to them by professionals. If the challenges the parents are going through are clearly spelt out, therapists who deal with the families of children with this disorder will know the type of treatments to provide, even if it has not been asked for. Aside helping therapeutic professionals, the findings will also inform the teachers at special schools as to how to draw their curriculum to meet the needs of the autistic children. This goes to show that the findings of this work will make meaningful contributions to policy making, research and practice. The aim of this study is therefore to find out the challenges and coping strategies adopted by parents with autistic children. Methods The current study is designed to have a qualitative background, using the phenomenological approach. This research design was selected to assist the researcher get a better understanding of the experiences faced by parents of children with ASD and also help in gaining the opportunity to observe the nonverbal cues, aside the spoken word from the interviews that were conducted. The study was conducted in the Greater Accra region of Ghana. Majority of the research work was done at PACID, an institution for parents who have children with disabilities and certain parts of Accra. A total number of ten parents were interviewed for the purpose of this research. To ensure gender representation, the researcher interviewed two male parents and seven female parents. One of the participants was a sister who was taking care of her brother who had autism. There were variations in occupation, which included both the formal and informal sectors of the Ghanaian economy. Most of the
Living with autistic spectrum disorder: parental experiences of raising a child with ASD
2012
The focus of the study was to explore parental experiences of raising a child with autistic spectrum disorder (ASD). A mixed-method approach consisting of questionnaires and semi-structured interviews was used in order to elicit parental perspectives of raising a child with ASD. Two semi-structured interviews were conducted with parents of children with ASD. Questionnaires were sent to parents of children with ASD in two special schools. The findings indicate that although each of the parents had a child with ASD, their experiences were all different. Many interesting accounts were documented and a wealth of information regarding the characteristic traits that children with ASD portray was recorded. The findings suggested that the majority of the parents experienced a low level of support from agencies and professionals. The general verdict was that of poor communication and a lack of understanding of parents' needs following formal diagnosis. Finally, a series of coping strategies were discovered ranging from family support to paid help.s ufl_1505 37..45
0 RIA parents and professional views
2013
The number of children diagnosed with an autistic spectrum disorder (ASD) is rising and is now thought to be as high as 1:100. While the debate about best treatment continues, the effects of having a child diagnosed with ASD on family life remain relatively unexplored. This article, by Karola Dillenburger of Queens University Belfast, Mickey Keenan of the University of Ulster, Alvin Doherty from the Health Service Executive Western Region, Tony Byrne of Parents' Education as Autism Therapists (PEAT) and Stephen Gallagher of the University of Ulster, sets out to adjust that balance. Drawing upon data from a comprehensive study of parental needs, these authors argue that parental and professional views do not always concur; that families make extraordinary sacrifices; that siblings are affected; and that parents are under tremendous stress. Parents argue that educational and social service supports are not efficient and that they are forced to rely largely on support from within the family or from friends. In particular, some important differences between parental and professional perceptions became apparent in relation to interventions based on Applied Behaviour Analysis (ABA). The authors of this article propose that these differences need to be taken seriously by teachers and other professionals as well as by policy-makers.