Living with children diagnosed with Autism Spectrum Disorder: Parental and professional views (original) (raw)
Related papers
Living with children diagnosed with autistic spectrum disorder: parental and professional views
British Journal of Special Education, 2010
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...
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.
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.
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.
Practice, 1995
Within the context of social work practice this paper-examines the extreme difficulties parents can experience with their children with autis~. k~resents case examples of the p common and devastating ways in which parents become aware that their child has a developmental disorder and describes the difficulties many experience in accessing professional diagnoses and support. Khe papQ also describes the common forms of challenging behaviour presented by children with autism about which parents may turn to social workers and concludes with a discussion of the value to social work development this particular client population provides. Howlin and Rutter (1987) describe the families of children ^with autism face considerable difficulties. Such children often present problems in respect of their unresponsiveness, challenging behaviour and long term special needs which confront their parents with daily problems that last for years (Liwag, 1989, Konstantareas, 1991). A successful intervention for the child with autism, therefore, generally requires successful work with the family (Powers, 199 1). This paper explores some of the particular difficulties that autism presents parents and describes these in relation to the experience of families referred to a specialist unit at the University of Hull (The Family Assessment and Support Unit). The Unit is designed to provide high quality personal and psychological services to individuals and families referred, and to ensure high quality practice placement experiences for social work students. The specific issues arising where autism is a factor provide rich ground for training in social work in terms of assessment, being involved in complex family work, and experience of multidisciplinary working. Research carried out at the Child Development Research Unit at the University of Nottingham by Newson, Dawson and Everard (1982) involved interviews with the parents of nearly one hundred "able autistic" children. The study reported that twothirds of the parents recalled difficulties in communicating with their child at the pre-verbal stage, 14 of whom stated that these difficulties resulted in great concern at the time. The baby's mother often feels that she is remote and self-contained, that she doesn't gaze or smile at her or that she doesn't snuggle against her when held. These experiences are portrayed vividly by Jane's mother who was quoted above: "Jane would allow herself to be cuddled but only if I didn't look at her She always resisted sitting on my lap unless she wasfacing away. And I could go to her with my arms out, just as I had a million times with my boys, but she would never reach out to me in return. I would stand grinning at her like some big Cheshire cat, just praying she would smile back at me. She never did. One day I found my husband doing the samehe was smiling at her the tears rolling down his face, begging her to smile back". Even at this stage, many parents rarely voice their fears, not even to each other. If raised at all, such observations are often discounted by relatives and family doctors who believe that they are over anxious and tell them that "All babies are different". It is our experience that the parents themselves are often glad to get this advice, which can, for a while, delay the tragic confrontation with the reality of their fears. The first of these areas concerns challenging behaviour where training on the STAR strategy (Zarkowska and Clements, 1989) has led to re-assertion of control for many parents. The second is in the area of communication where training on the use of a behavioural approach to simple communication and other skills (Gibb and Randall, 1989) has been greeted with relief by parents who previously had felt disempowered by their inability to encourage two-way conversation with their autistic child. This experience is particularly marked when the child has used them to serve basic needs (e.g. fetching drinks or snacks, playing in ritualistic ways) rather as though they were objects rather than people. Under these circumstances the communication of need has been one-way and parents feel used and rejected. Even the simplest communication in response to the parents can be greeted with joy as this mother describes: 'After two years of being pulled and pulled around we both felt used like robots. We certainly had no sense of being loved by Robbie who seemed not to notice us when were weren't useful to him. It feels great now that we have simple but reliable communication with him, such as him turning to his name or getting his shoes when we ask. We feel that we are members of his family again". The earlier cooperative work with parents starts the better. There is more likely to be quicker developmental progress and there is less time for the parents to suffer the negative effects of struggling to cope without professional advice. Working within the home on a multidisciplinary basis is particularly associated with positive outcomes with very young children (Prizant and Wetherby, 1989) and, in our experience has a greater change of success than clinic or classroom based work.
Families of children on the autism spectrum: experience of daily life and impact of parent education
Support for Learning, 2020
Information and support for families of children on the autism spectrum is limited in southeast Europe. A three-year project, Equity and Social Inclusion Through Positive Parenting (ESIPP), was established to develop and provide parent education (PE) in autism for families in Croatia, Cyprus and North Macedonia. This paper presents findings from Croatia regarding family life and the impact of PE. Data were collected via pre-and post-PE questionnaires and semi-structured interviews. Participants discussed the impact of autism on family life, the difficulty of obtaining a diagnosis, the importance of family support (and varying experience of formal support), common experiences of stigma and social exclusion and concerns for the future. The value and benefit of PE is identified, and recognition of its impact within Croatia has ensured its ongoing provision.