Child: Care, Health and Development, 42(6), 2016, pp.784-797.
Publisher:
Wiley
Parenting a child with autism spectrum disorder (ASD) can be stressful, and accessing services can add to this stress. Self-efficacy, agency and advocacy are important for parents when accessing and using services. To develop insight into parental advocacy, a meta-synthesis was undertaken to consolidate the literature focussing on parents' experiences of advocating for their child with ASD. benefits of advocacy; and the barriers to advocacy. The experience of advocacy for parents with a child with ASD is complex and intensive, presenting both personal and societal benefits, as well as challenges for parents. In supporting individuals with ASD and family well-being, service providers need to have an understanding of the advocating role of parents and ensure that opportunities exist
(Publisher abstract)
Parenting a child with autism spectrum disorder (ASD) can be stressful, and accessing services can add to this stress. Self-efficacy, agency and advocacy are important for parents when accessing and using services. To develop insight into parental advocacy, a meta-synthesis was undertaken to consolidate the literature focussing on parents' experiences of advocating for their child with ASD. A qualitative meta-synthesis was conducted. Fifteen databases were systematically searched by using key terms related to ASD, children, parents/carers, advocacy and qualitative studies. Twenty-four studies were identified and appraised using an adapted version of the Critical Appraisal Skills Programme tool. Data were synthesized into themes through the steps of review, meta-aggregation, integration and interpretation. Two overarching concepts emerged, illustrating both the challenging nature of advocacy and the associated personal and societal benefits. These two concepts are supported by eight themes: a life-long, all-encompassing challenge; advocacy as a parental coping strategy; advocacy involving working to create a future; balancing roles and needs; isolation versus support; personal impacts of advocacy; benefits of advocacy; and the barriers to advocacy. The experience of advocacy for parents with a child with ASD is complex and intensive, presenting both personal and societal benefits, as well as challenges for parents. In supporting individuals with ASD and family well-being, service providers need to have an understanding of the advocating role of parents and ensure that opportunities exist for their voices to be heard during service delivery.
(Publisher abstract)
This video champions the rights and interests of all people with autism and relates the stories by parents of autistic children. The aim is to provide individuals with autism and their families the help, support and services that they can access, trust and rely upon and which can make a positive difference to their lives.
This video champions the rights and interests of all people with autism and relates the stories by parents of autistic children. The aim is to provide individuals with autism and their families the help, support and services that they can access, trust and rely upon and which can make a positive difference to their lives.
... to support removed. The research showed the stark reality they often face: 63% of adults with autism do not have enough support to meet their needs 92% of parents are worried about their son or daughter’s future when they are no longer able to care for them 61% of adults with autism rely on their family financially and 40% live with their parents.
This report is based on the largest ever UK survey of the experiences of adults with autism and their families and reveals that nearly two thirds of adults with autism in England do not have enough support to meet their needs. Many adults with autism find themselves isolated and ignored. ‘I Exist’ is the clear message from adults with autism who want their needs understood and the barriers to support removed. The research showed the stark reality they often face: 63% of adults with autism do not have enough support to meet their needs 92% of parents are worried about their son or daughter’s future when they are no longer able to care for them 61% of adults with autism rely on their family financially and 40% live with their parents.
By the time he was three, Walker's parents were concerned enough about his delayed development to consult a paediatric neurologist. Doctors diagnosed autism and issued a grim prognosis: 'I hold out no hope for this child'. But they hadn't accounted for Walker's intelligence, affection, and sense of humour - or for the remarkable bonds that grew within his family. Walker's father, Robert Hughes,
By the time he was three, Walker's parents were concerned enough about his delayed development to consult a paediatric neurologist. Doctors diagnosed autism and issued a grim prognosis: 'I hold out no hope for this child'. But they hadn't accounted for Walker's intelligence, affection, and sense of humour - or for the remarkable bonds that grew within his family. Walker's father, Robert Hughes, tells a touching and inspiring story of discovering that their 'perfect little boy had a problem'. With disarming honesty and humour, the book tells how a family copes and keeps hope alive despite the staggering difficulties autism presents.
... Matthew has high functioning autism his obvious abilities helped to disguise his more fundamental autistic spectrum disorder. As a consequence, the author found that his efforts were not always appreciated. Like many parents, who ought to be a valuable source of information and help to busy professionals, he was sometimes made to feel as though it was him and not his son's autism that was the problem.
When his son, Matthew, was finally diagnosed with autism at 12 years old, the author thought the diagnosis marked the end of their troubles. In fact, despite the increase in reported levels of autism, appropriate support and clear information were hard to find. The author had to teach himself and then attempt to pass on his knowledge and understanding to those who worked with his son. But because Matthew has high functioning autism his obvious abilities helped to disguise his more fundamental autistic spectrum disorder. As a consequence, the author found that his efforts were not always appreciated. Like many parents, who ought to be a valuable source of information and help to busy professionals, he was sometimes made to feel as though it was him and not his son's autism that was the problem. So he wrote this book which provides a clear explanation of the autistic spectrum and dissects and dispels some of the myths about autistic behaviour and the various types of autism.
Child and Youth Care Forum, 43(3), 2014, pp.315-337.
Publisher:
Springer
Background: Over a decade ago, the National Research Council (NRC) published the influential book, Educating Children with Autism.
Objective: To survey parents and state-level special education administrators to evaluate how NRC’s recommendations, as published in Educating Children with Autism, have impacted educational practices for children with autism in the US.
Methods: 149 parents of children with autism and 35 state-level special education administrators from 35 states were surveyed on the degree to which they agreed with NRC’s recommendations and the degree to which they believed NRC’s recommendations have been implemented.
Results: Parents and administrators agreed with most NRC recommendations; however, disagreements between parents and administrators were evident regarding labeling of students with autism, intensity of services, and training of staff. Conversely, parents and administrators concurred that the recommendations had been poorly to modestly implemented, overall. Lowest levels of implementation were found for training of qualified staff, research-based curricula, and mental health supports for families. Qualitative analysis of parents’ comments highlighted
(Publisher abstract)
Background: Over a decade ago, the National Research Council (NRC) published the influential book, Educating Children with Autism.
Objective: To survey parents and state-level special education administrators to evaluate how NRC’s recommendations, as published in Educating Children with Autism, have impacted educational practices for children with autism in the US.
Methods: 149 parents of children with autism and 35 state-level special education administrators from 35 states were surveyed on the degree to which they agreed with NRC’s recommendations and the degree to which they believed NRC’s recommendations have been implemented.
Results: Parents and administrators agreed with most NRC recommendations; however, disagreements between parents and administrators were evident regarding labeling of students with autism, intensity of services, and training of staff. Conversely, parents and administrators concurred that the recommendations had been poorly to modestly implemented, overall. Lowest levels of implementation were found for training of qualified staff, research-based curricula, and mental health supports for families. Qualitative analysis of parents’ comments highlighted that vigorous advocacy was necessary for their children to receive appropriate services consistent with NRC’s recommendations.
Conclusions: Over a decade following publication of Educating Children with Autism, most of NRC’s recommendations have not been fully implemented. Policy makers should focus particular attention on improving professional training, disseminating research-based practices, and providing mental health supports for families.
(Publisher abstract)
Subject terms:
autistic spectrum conditions, autism, school children, special education, parents;
Reports on a large scale study which explored the nature of the marital relationship for 475 mothers of children with autism and 62 mothers of typically developing children. The authors recommendation that professionals should take more account of autism on the whole family and consider the extent to which the services they offer add to the stresses within the family or reduce them.
(Edited publisher abstract)
Reports on a large scale study which explored the nature of the marital relationship for 475 mothers of children with autism and 62 mothers of typically developing children. The authors recommendation that professionals should take more account of autism on the whole family and consider the extent to which the services they offer add to the stresses within the family or reduce them.
(Edited publisher abstract)
Subject terms:
autism, marriage breakdown, comparative studies, parents, relationships;
A practical book written for parents who have a child with autism. It covers the key aspects of life with a child, divided into ten steps. The steps include: sleeping, eating, toileting; using visual supports; adapting your home; using music; speech and language therapy; educational services; biomedical interventions; and building a support team. Strategies are clearly outlined and includes
A practical book written for parents who have a child with autism. It covers the key aspects of life with a child, divided into ten steps. The steps include: sleeping, eating, toileting; using visual supports; adapting your home; using music; speech and language therapy; educational services; biomedical interventions; and building a support team. Strategies are clearly outlined and includes practical examples, hints and tips.
Disability and Society, 26(2), March 2011, pp.193-205.
Publisher:
Taylor and Francis
... of the phases. The author concludes that a less confrontational and more collaborative relationship between parents and professionals has emerged.
Informed by a survey of the literature of parental accounts, and by the author's own experiences as the mother of a son diagnosed with an autistic spectrum disorder and severe learning difficulties, this article focuses on the contribution of parental voices to the discourse about autism. It identifies and examines 3 phases of parental contributions: from the 1960s to the 1980s when autism was considered a rare and obscure condition, the 1990s with an increase in public awareness and a parental movement which challenged mainstream scientific and medical views about autism, and from the early 2000s with parental activism and a shift away from the disease model of autism towards acceptance of autistic diversity and collaboration with scientists. The article discusses parental contributions in each of the phases. The author concludes that a less confrontational and more collaborative relationship between parents and professionals has emerged.
Child: Care, Health and Development, 32(3), May 2006, pp.371-385.
Publisher:
Wiley
... and in services and special schools. The sample consisted of 244 parents of children with ASD (age range: 2.69–17.81 years, male/female sex ratio 4 : 1). The data were collected using a questionnaire on experiences with education and support, which was compiled for the purpose of this study. The data resulting from the questionnaire were supplemented with information obtained from semi-structured in-depth interviews with a stratified The study revealed that parents experienced difficulties with the diagnostic process, with support and education provided by mainstream settings and with the accessibility of autism-specific service provisions. Conversely, parents reported to be satisfied with the quality of autism-specific support and education. Predictors of overall satisfaction were parental involvement
The aim of the present study was to identify and describe factors associated with variations in the level of parental satisfaction with formal support and education for children with autism spectrum disorder (ASD) in Flanders. Participants were recruited by a mailing from a diagnostic centre for pre-schoolers and by advertisements dispersed in the Flemish parent organization for ASD and in services and special schools. The sample consisted of 244 parents of children with ASD (age range: 2.69–17.81 years, male/female sex ratio 4 : 1). The data were collected using a questionnaire on experiences with education and support, which was compiled for the purpose of this study. The data resulting from the questionnaire were supplemented with information obtained from semi-structured in-depth interviews with a stratified The study revealed that parents experienced difficulties with the diagnostic process, with support and education provided by mainstream settings and with the accessibility of autism-specific service provisions. Conversely, parents reported to be satisfied with the quality of autism-specific support and education. Predictors of overall satisfaction were parental involvement in formal support, knowledge of available service provisions and time between first consultation and final diagnosis. Practical implications of the results are discussed.
Subject terms:
parents, special education, autism, autistic spectrum conditions, children;