Author: Vanessa Fong Publisher: ISBN: Category : Languages : en Pages : 0
Book Description
Few studies to date have explored the experiences of racialized and ethno-cultural families raising autistic children in multicultural contexts such as Canada. Research conducted in the US and Canada have identified strengths and difficulties related to family functioning and coping strategies used by immigrant parents. Additionally, this research has also identified barriers and facilitators to accessing diagnostic and other autism services across the lifespan. However, the majority of these studies have broadly categorized immigrant populations, potentially masking important differences within pan-ethnic populations. In Canada, and British Columbia (BC) specifically, one of the largest and fastest growing visible minority groups are Koreans (Statistics Canada, 2017). Yet despite this, no studies to date have examined the experiences and perceptions of Korean immigrant parents of autistic children living in BC. This gap in the research has become increasingly urgent given the growing prevalence rates of autism and the highly complex service system in Canada, which varies considerably across provinces. This research utilized a community engaged approach and qualitative methodology to explore quality of life, service navigation, and coping strategies among 25 Korean parents of autistic children (5-33 years) living in BC. This study addressed three aims. First, parents' conceptualizations and descriptions of family quality of life (FQOL) were explored. Analyses revealed three themes that were central to their definitions of FQOL: family cohesiveness, value orientation, and acceptance from society. Second, parents' perceptions of barriers and facilitators to accessing autism services were examined. Barriers at the system (e.g., ineffective school policies), provider (e.g., negative attitudes, lack of service navigation support), and family level (e.g., stigma) were identified. Facilitators included family-centered care (system level), culturally competent and bilingual professionals (provider level), and connections to cultural community organizations (family level). Third, a subset of caregivers (n=12) representing both high and low levels of FQOL shared their coping strategies on how they came to terms with their child's diagnosis and manage stress. The results are discussed linking previous research to current findings and considered in terms of practice and policy implications with future areas of research identified.
Author: Gardiner Publisher: ISBN: 9781473997080 Category : Autism spectrum disorders Languages : en Pages :
Book Description
This research methods case describes my dissertation research, which utilized a mixed-methods design to examine quality of life among families of children with autism spectrum disorder. A large group or participants completed surveys over the phone and online, and a smaller subset participated in follow-up interviews. The case presents an overview of the methodological challenges we confronted, including consideration of how best to engage diverse participants and choosing appropriate survey tools, given the unique needs of our population. We describe the strategies we employed to address these challenges and reflect on their effectiveness. In particular, we highlight a unique approach in which we hosted Knowledge Translation events that brought together individuals with autism spectrum disorder and their families with researchers, service providers, clinicians, and government representatives. These events proved critical across the research process, as they informed the original study design, served as a venue for participant recruitment, and inspired the inclusion of key questions within the interview guide. We also discuss methods of engaging hard-to-reach populations. The methodological implications of the study design and methodology are reviewed, and recommendations to future researchers are presented.
Author: Colleen M. Harker Publisher: ISBN: Category : Languages : en Pages : 76
Book Description
Given the unique demands of raising a child with autism spectrum disorder (ASD), it is necessary to understand the impact on the quality of life (QoL) of their caregivers. Though QoL is considered an important outcome in health services research (Moons et al., 2006; Oliveira, Carvalho, & Esteves 2016), there is a lack of knowledge about QoL in caregivers of children with ASD or caregivers of children for whom there are ASD concerns, but no formal diagnosis. The objectives of the current study were to (1) Examine how having a young child with ASD or ASD concerns affects caregiver QoL, relative to children with other developmental concerns and typical development; (2) Examine profiles across QoL domains within each caregiver group to determine which QoL domains were most impacted relative to other domains; (3) Examine to what extent three levels of determinants contribute to caregiver QoL: family demographic (child age, family income, caregiver employment status, number of children in the home), psychological (parenting stress), and health care (family-centered care); and 4) (Exploratory) Examine the extent to which family centered care moderates the relation between parenting stress and QoL. The sample was drawn from a larger NIH study examining screening and referral practices for children with ASD in primary care provider (PCP) practices and early intervention (EI) agencies in Washington State. The sample was comprised of three groups: caregivers of children with ASD or ASD concerns (ASD/ASD Concerns; n = 42), caregivers of children with other developmental concerns (Other Concerns; n = 34), and caregivers of children with typical development (No Concerns; n = 112). Caregivers completed a measure of family demographics, parenting stress, family-centered care, and QoL at their time of entry in the study. Results indicated that caregivers in the ASD/ASD Concerns group reported significantly lower Psychological and Social QoL than caregivers in the Other Concerns group and the No Concerns group, and significantly lower Environmental QoL and Physical QoL than caregivers in the No Concerns group (Objective 1). For caregivers in the ASD/ASD Concerns group, Social QoL was significantly lower than Environmental and Physical QoL and Psychological QoL was significantly lower than Environmental QoL (Objective 2). Income, parenting stress, and family-centered care were significant predictors for all four QoL domains, while the number of children residing in the home was a significant predictor for Physical QoL only. There was also a significant group by stress interaction for Environmental QoL, such that there was a stronger negative relationship between parenting stress and Environmental QoL for caregivers in the ASD/ASD Concerns group compared to caregivers in the No Concerns group (Objective 3). Family-centered care did not moderate the relationship between parenting stress and QoL as predicted (Objective 4). Overall, these findings suggest that future research is needed to determine how to provide additional support to all caregivers, particularly low-income families and caregivers who are experiencing high levels of parenting stress and low levels of family-centered care.
Author: Roy Richard Grinker Publisher: Basic Books ISBN: 0786721928 Category : Family & Relationships Languages : en Pages : 354
Book Description
A father's inspiring portrait of his daughter informs this classic reassessment of the "epidemic" of autism. When Isabel Grinker was diagnosed with autism in 1994, it occurred in only about 3 of every 10,000 children. Within ten years, rates had skyrocketed. Some scientists reported rates as high as 1 in 150. The media had declared autism an epidemic. Unstrange Minds documents the global quest of Isabel's father, renowned anthropologist Roy Richard Grinker, to discover the surprising truth about why autism is so much more common today. In fact, there is no autism epidemic. Rather, we are experiencing an increase in autism diagnoses, and Grinker shows that the identification and treatment of autism depends on culture just as much as it does on science. Filled with moving stories and informed by the latest science, Unstrange Minds is a powerful testament to a father's search for the truth.
Author: Fred R. Volkmar Publisher: Springer Science & Business ISBN: 1493905066 Category : Psychology Languages : en Pages : 346
Book Description
The research on children with autism spectrum disorders (ASD) is extensive and growing. Although these conditions are recognized as affecting the entire lifespan, the literature on ASD after childhood is limited and has not been brought together in a single volume in over a decade. Adolescents and Adults with Autism Spectrum Disorders fills this knowledge gap by focusing on needs and difficulties unique to these stages of development. Expert contributors offer cogent reviews of complex issues, from education to employment, leisure activities to illegal behaviors, mental health issues to medical health concerns. The latest findings in key areas, such as psychosocial and residential treatments, social skills programs, epidemiology, the impact of ASD on families, are examined in detail. Throughout the volume, coverage focuses on areas requiring improved models of assessment, updated data, new interventions and increased support services. Featured topics include: Transition from high school to adulthood for adolescents and young adults with ASD. Innovative programming to support college students with ASD. Romantic relationships, sexuality and ASD. Treatment of mental health comorbidities. Assessment and treatment planning in adults with ASD. The range of outcomes and challenges in middle and later life. Adolescents and Adults with Autism Spectrum Disorders is a must-have reference for a wide range of clinicians and practitioners – as well as researchers and graduate students – in clinical child, school and developmental psychology; child and adolescent psychiatry; social work; rehabilitation medicine/therapy; education and general practice/family medicine. It will also serve as an important resource for parents and caregivers with its focus on translating the current state of knowledge relevant to understanding adolescents and adults with ASD into practical and relevant recommendations on how best to support them.
Author: National Academies of Sciences, Engineering, and Medicine Publisher: National Academies Press ISBN: 030944070X Category : Law Languages : en Pages : 362
Book Description
Bullying has long been tolerated as a rite of passage among children and adolescents. There is an implication that individuals who are bullied must have "asked for" this type of treatment, or deserved it. Sometimes, even the child who is bullied begins to internalize this idea. For many years, there has been a general acceptance and collective shrug when it comes to a child or adolescent with greater social capital or power pushing around a child perceived as subordinate. But bullying is not developmentally appropriate; it should not be considered a normal part of the typical social grouping that occurs throughout a child's life. Although bullying behavior endures through generations, the milieu is changing. Historically, bulling has occurred at school, the physical setting in which most of childhood is centered and the primary source for peer group formation. In recent years, however, the physical setting is not the only place bullying is occurring. Technology allows for an entirely new type of digital electronic aggression, cyberbullying, which takes place through chat rooms, instant messaging, social media, and other forms of digital electronic communication. Composition of peer groups, shifting demographics, changing societal norms, and modern technology are contextual factors that must be considered to understand and effectively react to bullying in the United States. Youth are embedded in multiple contexts and each of these contexts interacts with individual characteristics of youth in ways that either exacerbate or attenuate the association between these individual characteristics and bullying perpetration or victimization. Recognizing that bullying behavior is a major public health problem that demands the concerted and coordinated time and attention of parents, educators and school administrators, health care providers, policy makers, families, and others concerned with the care of children, this report evaluates the state of the science on biological and psychosocial consequences of peer victimization and the risk and protective factors that either increase or decrease peer victimization behavior and consequences.
Author: Tom Nichols Publisher: Oxford University Press ISBN: 0197763839 Category : Computers Languages : en Pages : 337
Book Description
"In the early 1990s, a small group of "AIDS denialists," including a University of California professor named Peter Duesberg, argued against virtually the entire medical establishment's consensus that the human immunodeficiency virus (HIV) was the cause of Acquired Immune Deficiency Syndrome. Science thrives on such counterintuitive challenges, but there was no evidence for Duesberg's beliefs, which turned out to be baseless. Once researchers found HIV, doctors and public health officials were able to save countless lives through measures aimed at preventing its transmission"--
Author: Mary Lynch Barbera, Ph.D. Publisher: Hay House, Inc ISBN: 1401965539 Category : Psychology Languages : en Pages : 266
Book Description
Help remediate—and in some cases eliminate—autism and other developmental delays in young children, even in as little as 15 minutes a day with this toolkit of behavioral practices that can be taught at home. Developmental delays and signs of autism usually show up before 18 months of age, yet children are often not diagnosed until they are 4 or 5 years old. In Turn Autism Around, Dr. Mary Barbera explains why parents can't afford to worry and wait in long lines for evaluations and treatment while not knowing how to help their children. She empowers parents, caregivers, and early intervention professionals to regain hope and take back control with simple strategies to dramatically improve outcomes for their children. Dr. Barbera has created a new approach to teaching kids with developmental delays that uses the science of Applied Behavior Analysis (ABA) married with a positive, child-friendly methodology that any parent can use—whether or not their child has delays—to learn to teach communication skills, socialization strategies, as well as tackle sleep, eating, potty training, and behavior challenges in a positive, effective, and lasting way. Turn Autism Around is the first book of its kind that calls attention to an important fact: parents can make a tremendous impact on their child's development through behavioral practices taught at home, even in as little as 15 minutes a day. Her program shows these autism and developmental delays can be remediated, and in some cases, delays can be caught up altogether, if parents intervene while the child is young. This book is for parents of young children aged one-to-five years who are passionate about helping their child as well as learning how they can change the trajectory of their child's and family's life.
Author: Amy M. Wetherby Publisher: Record Forms ISBN: 9781557666680 Category : Medical Languages : en Pages : 0
Book Description
The CSBS™ Record Forms and Caregiver Questionnaires, sold in packages for easy re-ordering, are assessment forms for the Communication and Symbolic Behavior Scales (CSBS™), one of the best measures of early communication in children 8–24 months (or up to 72 months if developmental delays are present). The norm-referenced, standardized CSBS™ uses parent interviews and naturalistic sampling procedures to collect crucial information — not just on language skills but also on often-overlooked communicative behaviors like communicative functions, gestures, rate of communicating, positive affect, and gaze shifts. CSBS™ takes just 50–75 minutes for child assessment and 60–75 minutes for in-depth scoring. Backed by technical data, CSBS™ is compatible with most developmental curricula in use today. A package of CSBS™ Record Forms and Caregiver Quesionnaires includes: 25 Caregiver Questionnaires: Caregivers complete this 15-minute qualitative questionnaire to provide background information. Their responses provide a baseline that helps professionals evaluate a child's performance. 25 Behavior Sample Record Forms: Data from the CSBS™ behavior sample is tallied on this form and converted to scores on 22 five-point scales. 2 Outline Cards: These reference cards outline sampling procedures step by step and give directions for scoring. Available separately or as part of the CSBS™ Complete Kit are the other materials required to conduct a CSBS™ assessment. These forms are part of CSBS™, a norm-referenced, standardized tool that uses parent interview and direct observation to assess infants, toddlers, and preschoolers at risk for communication delays and impairments. With 22 rating scales that accurately survey children's language skills and symbolic development, CSBS is backed by technical data and compatible with most developmental curricula in use today. This product is sold in a package of 25. Learn more about the whole CSBS system.
Author: Vanessa Fong
Author: Gardiner
Author: Colleen M. Harker
Author: 莊宜靜
Author: Roy Richard Grinker
Author: Fred R. Volkmar
Author: National Academies of Sciences, Engineering, and Medicine
Author: Tom Nichols
Author: Mary Lynch Barbera, Ph.D.
Author: Amy M. Wetherby