Wednesday, April 15, 2015

Parents of Children on the Autism Spectrum Experience High Levels of Fatigue and Mental Distress

Parents are often overwhelmed by the challenges presented by a child with an autism spectrum disorder (ASD). Studies indicate that the demands placed on parents caring for a child with autism contribute to a higher overall incidence of parental stress, depression, and anxiety and adversely affects family functioning and marital relationships compared with parents of children with other intellectual, developmental, or physical disabilities. Mothers of children with ASD, in particular, appear to face unique challenges that potentially have an impact on their health and wellbeing.
Parents of children with ASD are increasingly involved in the provision of early intervention and learning activities to promote positive outcomes for their children. However, several studies have documented that parental stress as well as a lack of time and energy are barriers to providing early intervention activities. Because autism impairs social relatedness and adaptive functioning, parent stress can decrease helpful psychological processes and directly influence the parent or caregiver’s ability to support the child with disabilities. Consequently, understanding factors, such as lack of energy or fatigue that may limit the capacity of the parent to assist in promoting their child’s development is critical for this group.
                                                                                Research
A study published in the journal Autism examined the extent to which parents experience fatigue and its relationship to other aspects of wellbeing and parenting. Fifty mothers of children ages 2-5 years with ASD participated in the study and completed questionnaires assessing level of fatigue, parenting self-efficacy (belief about the ability to parent successfully), children’s behavioral and emotional problems, sleep quality, parent support needs, and overall physical activity. The study found that compared with mothers of typically developing children, mothers of children with ASD reported significantly higher fatigue, with overall scores in the moderate range. Factors associated with high levels of fatigue were poor maternal sleep quality, a high need for social support and poor quality of physical activity. Fatigue was also significantly related to other aspects of wellbeing, including stress, anxiety and depression, and lower parenting efficacy and satisfaction.
These findings were somewhat expected given the additional caregiving demands, parenting challenges and pressures of managing family life when raising a child with an ASD. Likewise, It is also probable that symptoms of depression, anxiety, stress and worry (body tension, increased heart rate and rumination) can be mentally taxing and contribute to, or exacerbate fatigue. The researchers also note that it was not surprising that poor sleep quality was associated with higher levels of fatigue given the large amount of research indicating that inadequate sleep and poor sleep quality is associated with a range of physical health and wellbeing difficulties. Parents of children with ASD are at particular risk of sleep disruption and poor sleep quality owing to the high rate of sleep problems in their children. Parents reported that their child waking was the primary reason for sleep disruption. For other parents in the study, stress, anxiety and not being able to wind down were stated reasons for sleep disruption.
                                                                              Implications
What are the implications of this study? The findings clearly indicate the need for interventions to specifically target parental fatigue and its impact on families affected by ASD both in the present and longer term. In addition to interventions targeting child sleep problems, parents are likely to benefit from psycho-education about fatigue and its potential effects on wellbeing, parenting and caregiving. This includes information about strategies to minimize and/or cope with the effects of sleep disruption, increase health and self-care behaviors, and strengthen opportunities for social support. It is well established that social support is protective of optimal parent wellbeing and, therefore, is an important component of any intervention to address fatigue and wellbeing of parents of children with an ASD. Parents with limited assistance to share the daily demands of caregiving and family life are likely to be at greater risk of fatigue than parents with more support. For parents with limited support, there might also be fewer opportunities to engage in self-care behaviors that are likely to alleviate or protect them from fatigue.
From a clinical perspective, professionals working with families of children with an ASD should be aware of negative effects of fatigue in addition to other wellbeing difficulties, such as stress and anxiety. An assessment of the presence and severity of the physical, cognitive and emotional symptoms of fatigue, as well as the perceived impact on daily functioning, mood, relationships, parenting and other aspects of caregiving is important. Lastly, future work in this area should involve the development and evaluation of information resources and intervention approaches to assist parents of children with an ASD to manage fatigue and promote their overall wellbeing. The longer-term benefits for parents in terms of strengthening their overall health, wellbeing and parenting should also be a focus of research. 
Giallo, R., Wood, C. E., Jellett, R., & Porter, R. (2013). Fatigue, wellbeing and parental self-efficacy in mothers of children with an Autism Spectrum Disorder. Autism, 17, 465-480.
DOI: 10.1177/1362361311416830


School Psychologist's Guide to Assessment and Intervention for Autism Spectrum Disorder (ASD)

A best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in schools provides school psychologists with a practical and accessible step-by-step guide to screening, assessing, and educating children at-risk for autism spectrum disorders (ASD). Written by Lee A. Wilkinson, PhD, NCSP, a practicing school psychologist, this award winning text is grounded in the latest research and includes illustrative case examples, FAQs, quick reference boxes, glossary, and an index to 50 evidence-based best practice recommendations. It is an essential guide and valuable resource for practitioners in school and clinical psychology, general and special education, counseling, social work, and for graduate and pre-service students. Parents, advocates, administrators, and attorneys will also find the content informative and helpful. This text is a welcome addition to the reference libraries of all who want to further their understanding of the identification and treatment of school-age children with ASD. Highly readable and comprehensive, this book sets the standard for those working with students with ASD. This book makes also an ideal text or guide for graduate-level training courses in psychology and special education, and has become a widely used resource.
A Best Practice Guide… consists of seven chapters. Chapter 1 begins with two case vignettes and a discussion of the challenges facing school psychologists and educators. The reader is then provided with an overview of Asperger syndrome and the autism spectrum disorders (ASD). Chapter 2 focuses on the screening and identification of children in need of further assessment. Instruments are reviewed and a multi-step screening process described. Chapter 3 addresses evidence-based assessment practices, including individual instruments and a developmentally-based procedure. In Chapter 4, the case examples are presented to illustrate best practice in the assessment of ASD. Chapter 5 focuses on intervention practices and describes current scientifically-based interventions and treatments for ASD. Chapter 6 provides information on the identification of special educational needs and specialized services. Chapter 7 concludes with a discussion of the current status of the field and future directions for research.
Praise and Reviews
Autism Spectrum Quarterly calls the book “a landmark contribution destined to become a classic in the field of autism spectrum disorders” and comments, “Dr. Wilkinson has made an enormous contribution to the field by comprehensively and systematically illuminating not only what needs to be done, but also how to go about doing it. The book is exquisitely and meticulously organized, making it an easy-to-access reference guide as well as a comprehensive text book and training manual."
The Canadian Journal of School Psychology remarks, "Overall, this book presents readers with an excellent overview of autism and Asperger syndrome. The author has expertly formatted the book and each chapter so that the reader is provided with an excellent resource of recent and relevant information pertaining to screening, formal assessment, and interventions with individuals in this population. The use of two case studies helps to highlight some of the information presented throughout the book. …many school-based professionals will be able to make use of this excellent resource".
According to the Journal of Autism andDevelopmental Disorders "This book provides a complete source for parents, educators, researchers and clinicians seeking information related to assessment and interventions available for individuals (mostly children) diagnosed with Autism Spectrum Disorders (ASD). The main reason the book stands out is the application of all the discussed concepts in the two case examples of Jeremy and Sally. Dr. Wilkinson presents a detail and person-centered approach to the stages and issues that needs to be addressed while conducting an assessment and planning interventions for individuals diagnosed with ASD. Educators and clinicians can make use of the detailed case examples as those may be applicable to their work environment."
Ally4autism comments, “Dr. Wilkinson has created an outstanding blend of academic research and practical application in a text that is so clearly written it is a pleasure to read for professionals and parents alike. His book concisely illustrates best practices in screening, assessment, treatment and special education services. Through case examples of two children, he demonstrates how these best practices can be put into action. This book fills an important need that has existed for years. Dr. Wilkinson has created an indispensable resource that should definitely be in each school’s professional library.”
A Best Practice Guide... was named the Winner in the Education/Academic category of the 2011 Next Generation Indie Book Awards and honored as an Award-Winning Finalist in the Education/Academic category of the "Best Books 2010 Awards” sponsored by USA Book News.
A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools is available from Jessica Kingsley Publishers, ISBN: 978-1-84905-811-7 and can be ordered directly from the publisher at http://www.jkp.com/ and all major booksellers, including www.amazon.com. The book is available in both print and eBook formats. Dr. Wilkinson is also editor of a recent volume in the APA School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools and author of the new book, Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBT.

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