Thursday, October 10, 2013

Fatigue and Wellbeing in Mothers of Children with Autism Spectrum Disorder (ASD)

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
Lee A. Wilkinson, PhD, CCBT, NCSP is author of the award-winning book, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools, published by Jessica Kingsley Publishers. 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.


Tuesday, October 1, 2013

Independent Living and Young Adults with ASD

There has been a dramatic worldwide increase in reported cases of autism over the past decade. The prevalence rates in the US have risen steadily, from one in 150, to one in 110, and now to one in every 68 American children. This represents a 78 percent increase in the number of children identified with an autism spectrum disorder (ASD) over the past decade. The increase in the prevalence of ASD among children indicates that a correspondingly large number of youth will be transitioning into adulthood in the coming years. It is estimated that approximately 50,000 adolescents with autism will turn 18 years old this year in the U.S. As these numbers continue to rise, there is a pressing need to understand the transition experience of young adults with ASD in today’s world.
According to a study published in the journal Autism, young adults with ASD are more likely to live with their parents and least likely to live independently after leaving high school as compared to those with other types of disabilities. For the study, researchers examined the prevalence and correlates of three living arrangements (with a parent or guardian, independently or with a roommate, or in a supervised setting) among a nationally representative sample of 620 postsecondary young adults with ASD since leaving high school. They were compared with 450 individuals with intellectual disability (InD), 410 with learning disabilities (LD) and 380 with emotional disturbance (ED) who were all part of the National Longitudinal Transition Study-2, a long-term federally-funded survey of students in special education and their parents.
Compared with young adults with other disability types, young adults with an ASD were significantly more likely to have ever lived with a parent or guardian (87.1%) and less likely to have ever lived independently (16.6%) since leaving high school. In follow-up analyses, the researchers found no independent living among young adults with ASD who had been out of high school for 2 years or less at the time of the survey. In contrast, the comparable rate was 22.2% for youth in InD group.
Overall, the study’s findings show that young adults with an ASD have a different residential transition experience than their peers with LD, ED, or InD. Young adults with an ASD resided with a parent or guardian at higher rates and for longer periods of time after leaving high school than young adults with other disabilities. Moreover, young adults with an ASD had the highest rate of supervised living arrangements and the lowest rate of independent living since leaving high school. These results suggest that young adults with an ASD are particularly vulnerable during the initial years in the transition to adulthood where they experience a shift in service provision after leaving high school. Consequently, many young adults with an ASD are not experiencing opportunities to explore various residential options as young adults.
The evidence presented in this study suggests that the vast majority of young adults with ASD will be residing in the parental or guardian home during the period of emerging adulthood. The lack of services available to help young adults with ASD transition to greater independence has been noted by researchers for a number of years and has become an increasingly important issue as children identified with ASD reach adolescence and adulthood. More research is needed to identify ways to effectively implement residential transition plans that best meet the needs and pref­erences of young adults with ASD and their families. Research suggests that prolonged caregiving of an adult child with autism can adverse effects on maternal well-being. Thus, investigating a variety of in-home interventions that might improve the qual­ity of life for families and adults with ASD may be helpful in that the vast majority of young adults are residing in the parental home. Lastly, the focus of intervention/treatment must shift from remediating the core deficits in childhood to promoting adaptive behaviors in secondary education that can facilitate and enhance ultimate functional independence and quality of life in adulthood. This includes addressing new developmental challenges such as independent living, vocational engagement, postsecondary education, and family support.
Prevalence and correlates of postsecondary residential status among young adults with an autism spectrum disorder. Kristy A Anderson, Paul T Shattuck, Benjamin P Cooper, Anne M Roux and Mary Wagner. Autism published online 30 August 2013. DOI: 10.1177/1362361313481860
The online version of this article can be found at: http://aut.sagepub.com/content/early/2013/08/27/1362361313481860

Lee A. Wilkinson, PhD, CCBT, NCSP is author of the award-winning book, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools, published by Jessica Kingsley Publishers. 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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