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)
Research in Autism Spectrum Disorders, 23, 2016, pp.36-49.
Background: Previous research has raised concerns about the quality of life (QoL) of parents of children with autism spectrum disorder (ASD). A better understanding of parental QoL can inform clinicians and policymakers and lead to improved outcomes for both parents and children.
Aims: This review aimed to systematically examine studies measuring the QoL among parents of children with ASD (<18 years) and to investigate its parental, child-related and contextual associated factors.
Methodology: An electronic database search was conducted using Medline, Psycinfo, Embase, CINAHL, Biosis, ASSIA, Social Services Abstracts, Sociological Abstracts and Open grey.
Results: This review indicated poorer QoL among parents of children with ASD compared to parents of typically developing children or to population norms. Variables associated with lower parental QoL within this group included child behavioural difficulties, unemployment, being a mother and lack of social support.
Conclusion: This review verified previous reports on lower QoL among parents of children with ASD and highlighted potential areas of support. Implications for future research, policy and practice are discussed.
(Publisher abstract)
Background: Previous research has raised concerns about the quality of life (QoL) of parents of children with autism spectrum disorder (ASD). A better understanding of parental QoL can inform clinicians and policymakers and lead to improved outcomes for both parents and children.
Aims: This review aimed to systematically examine studies measuring the QoL among parents of children with ASD (<18 years) and to investigate its parental, child-related and contextual associated factors.
Methodology: An electronic database search was conducted using Medline, Psycinfo, Embase, CINAHL, Biosis, ASSIA, Social Services Abstracts, Sociological Abstracts and Open grey.
Results: This review indicated poorer QoL among parents of children with ASD compared to parents of typically developing children or to population norms. Variables associated with lower parental QoL within this group included child behavioural difficulties, unemployment, being a mother and lack of social support.
Conclusion: This review verified previous reports on lower QoL among parents of children with ASD and highlighted potential areas of support. Implications for future research, policy and practice are discussed.
(Publisher abstract)
Subject terms:
quality of life, autistic spectrum conditions, parents, systematic reviews;
WATSON Shelley L., COONS Kelly D., HAYES Stephanie A.
Journal article citation:
Journal of Intellectual and Developmental Disability, 38(2), 2013, pp.95-104.
Publisher:
Taylor and Francis
To compare the stress of parents of children with fetal alcohol spectrum disorder (FASD) to parents of children with autism spectrum disorder (ASD) 25 parents of children with ASD and 25 parents of children with FASD completed the Parenting Stress Index – Short Form (PSI-SF) and the Questionnaire on Resources and Stress – Friedrich's Version (QRS-F). Although both parent groups reported elevated stress, PSI-SF results indicated that parents of children with FASD were experiencing significantly more stress compared to parents of children with ASD. No significant differences were found between groups on the total QRS-F, but parents of children with FASD had higher scores on the Pessimism subscale. The authors call for measures grounded in theory as well as mixed methods research that includes
(Edited publisher abstract)
To compare the stress of parents of children with fetal alcohol spectrum disorder (FASD) to parents of children with autism spectrum disorder (ASD) 25 parents of children with ASD and 25 parents of children with FASD completed the Parenting Stress Index – Short Form (PSI-SF) and the Questionnaire on Resources and Stress – Friedrich's Version (QRS-F). Although both parent groups reported elevated stress, PSI-SF results indicated that parents of children with FASD were experiencing significantly more stress compared to parents of children with ASD. No significant differences were found between groups on the total QRS-F, but parents of children with FASD had higher scores on the Pessimism subscale. The authors call for measures grounded in theory as well as mixed methods research that includes the subjective experience of parents’ stress.
(Edited publisher abstract)
Social Work in Mental Health, 10(4), November 2012, pp.311-330.
Publisher:
Taylor and Francis
Place of publication:
Philadelphia, USA
To date, little is known about how a diagnosis of Autism Spectrum Disorder (ASD) is delivered and experienced by families. This study examined the experiences of 10 parents receiving a diagnosis of ASD for their child. Findings revealed a lengthy, complex, and discouraging assessment and diagnostic process that resulted in parents feeling confused, disempowered, and overwhelmed. Identified themes associated with diagnosis comprised: initial recognition that “something is different”; waiting, worry, and uncertainty; preference for diagnostic information in a hopeful tenor; feeling overwhelmed with information and emotion at diagnosis; processes of grief, relief, and making sense of ASD; and becoming an advocate, expert, and case manager. The importance of empowering parents by providing support,
To date, little is known about how a diagnosis of Autism Spectrum Disorder (ASD) is delivered and experienced by families. This study examined the experiences of 10 parents receiving a diagnosis of ASD for their child. Findings revealed a lengthy, complex, and discouraging assessment and diagnostic process that resulted in parents feeling confused, disempowered, and overwhelmed. Identified themes associated with diagnosis comprised: initial recognition that “something is different”; waiting, worry, and uncertainty; preference for diagnostic information in a hopeful tenor; feeling overwhelmed with information and emotion at diagnosis; processes of grief, relief, and making sense of ASD; and becoming an advocate, expert, and case manager. The importance of empowering parents by providing support, information, resources, and tools for navigating the complexity of service/treatments at the time of diagnosis was emphasized within a parent–professional partnership. A protocol for practice, focused on enhanced parental empowerment, is offered including specific clinical guidelines (what to share, how to share, and when to share) for sharing a diagnosis of ASD.
Social Work with Groups, 33(1), January 2010, pp.69-83.
Publisher:
Taylor and Francis
Place of publication:
Philadelphia, USA
Receiving a diagnosis of an autism spectrum disorder often elicits strong emotional reactions from parents of the diagnosed child. Follow-up services and continued support for these families is a necessary component to help families adapt and meet their and their children's needs. This pilot study was conducted to determine if support groups could meet the express needs of parents after their child had received a diagnosis of an autism spectrum disorder. A psychoeducational approach was used in the implementation of two 6-session, co-facilitated support groups. Pre- and post-support group surveys, using the Family Empowerment Scale, were administered to the parents attending both support groups to measure advocacy skills and self-efficacy. The results found statistically significant
Receiving a diagnosis of an autism spectrum disorder often elicits strong emotional reactions from parents of the diagnosed child. Follow-up services and continued support for these families is a necessary component to help families adapt and meet their and their children's needs. This pilot study was conducted to determine if support groups could meet the express needs of parents after their child had received a diagnosis of an autism spectrum disorder. A psychoeducational approach was used in the implementation of two 6-session, co-facilitated support groups. Pre- and post-support group surveys, using the Family Empowerment Scale, were administered to the parents attending both support groups to measure advocacy skills and self-efficacy. The results found statistically significant increases in the average mean scores for the 3 subscales of the Family Empowerment Scale. The article concludes that, in the immediate aftermath of receiving this diagnosis, the encouragement and assistance gained through the mutual aid process of a support group can be invaluable. Implications for practice and research are discussed.
Subject terms:
parents, support groups, autistic spectrum conditions, diagnosis;
This small-scale study obtained the views from 25 parents of children newly diagnosed with ASD on what they had accessed and how, before and after diagnosis. It suggests that professionals give serious consideration to knowing what has been provided to a family so that they receive useful and timely information and repetition and confusion are avoided.
This small-scale study obtained the views from 25 parents of children newly diagnosed with ASD on what they had accessed and how, before and after diagnosis. It suggests that professionals give serious consideration to knowing what has been provided to a family so that they receive useful and timely information and repetition and confusion are avoided.
Subject terms:
parents, user views, access to information, autistic spectrum conditions;
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.
Parents of young children newly diagnosed as on the autism spectrum are often at a loss for ideas about how best to help their child. They feel dismayed and 'shut out' by their child and are often also having to grapple with language and behaviour problems. This book is not just a collection of play ideas; it shows how to break down activities into manageable stages, and looks at ways to gain
Parents of young children newly diagnosed as on the autism spectrum are often at a loss for ideas about how best to help their child. They feel dismayed and 'shut out' by their child and are often also having to grapple with language and behaviour problems. This book is not just a collection of play ideas; it shows how to break down activities into manageable stages, and looks at ways to gain a child's attention and motivation and to build on small achievements. The use of case studies illustrates how problems of ritual and obsession can be used and redirected positively and shows how to structure play activities and overcome communication barriers by using picture cards. Each chapter covers a collection of ideas around a theme, including music, art, physical activities, playing outdoors, puzzles, turn-taking and using existing toys to create play sequences. There are also chapters on introducing reading and making the most of television. The ideas are useful both for toddlers and primary age children who are still struggling with play.
Subject terms:
parents, autistic spectrum conditions, carers, case studies;
... 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.
Journal of Family Social Work, 24(2), 2021, pp.98-117.
Publisher:
Taylor and Francis
Place of publication:
Philadelphia, USA
... to unearthing the experiences of adults with ASD and their parents pertaining to social communication supports and services. This qualitative study gathered perceptions from 17 parents through focus groups aimed at determining barriers to and gaps in the system of social communication supports and services for adults with ASD. Using a phenomenological approach, conceptual content analysis was used to examine
(Edited publisher abstract)
Adults with autism spectrum disorder (ASD) experience significant social communication challenges that impact key areas of life, including relationship and employment success. Evidence points to great potential for social communication growth in adults with ASD; however, families’ access to supports and services is limited by lack of funding and accessibility. Scant research has been dedicated to unearthing the experiences of adults with ASD and their parents pertaining to social communication supports and services. This qualitative study gathered perceptions from 17 parents through focus groups aimed at determining barriers to and gaps in the system of social communication supports and services for adults with ASD. Using a phenomenological approach, conceptual content analysis was used to examine the parents’ perceptions and determine coding categories. Analyses revealed a number of barriers to effective use of such services and supports, and wishes for changes to facilitate services and supports in this area. Implications for professionals and policymakers are presented.
(Edited publisher abstract)
Subject terms:
autistic spectrum conditions, access to services, communication, parents, adults;