Sunday, May 14, 2017

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

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 an autism spectrum disorder (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.

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. He is also editor of a best-selling text 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 book, Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBT. His latest book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition).

Wednesday, May 3, 2017

Teaching Social Skills to Learners on the Autism Spectrum

Impairment in social communication and interaction is a core feature of autism spectrum disorder (ASD). Social skills deficits include difficulties with initiating interactions, maintaining reciprocity, taking another person’s perspective, and inferring the interests of others.  Unfortunately, many children with ASD do not receive consistent and intensive social skills programming in school. This is problematic, especially considering social impairments may result in negative outcomes, such as poor academic achievement, social failure, isolation, and peer rejection, which often leads to co-occurring (comorbid) anxiety and depression. 
Because social skills are critical to successful social, emotional, and cognitive development and long-term outcomes, best practice indicates that social skills instruction should be an integral component of educational programming for all children with ASD. Research evidence suggests that when appropriately planned and systematically delivered, social skills instruction has the potential to produce positive effects in the social interactions of children with ASD. Both the National Professional Development Center on Autism (NPDC) and the National Autism Center (NAC) have identified social skills training/instruction as an evidence-based intervention and practice. Social skills training is typically offered as small-group instruction with a shared goal or outcome of learned social skills in which participants can learn, practice, and receive feedback. These interventions seek to build social interaction skills in children and adolescents with ASD by targeting basic responses (e.g., eye contact, name response) to complex social skills (e.g., how to initiate or maintain a conversation). 

Most often, schools are expected to assume the responsibility of delivering social skills training programs to children with social skills deficits, because these impairments significantly interfere with social relationships and have an adverse effect on academic performance. Although equipped to teach social skills, implementing social skills programming can be challenging for school personnel (teachers, counselors, psychologists, social workers), who often have limited time and resources. Recent meta-analysis research suggests that the effectiveness of social skills training can be enhanced by increasing the quantity (or intensity) of social skills interventions, providing instruction in the child’s natural setting, matching the intervention strategy with the type of skill deficit, and ensuring treatment integrity (fidelity). In order for students to learn, practice, and maintain expected social behavior, educators must teach social skills within the context of the various school settings that students encounter each day (i.e., classroom, special subject areas such as art and music, cafeteria, and playground). 
The following are recommended when developing a social skills intervention strategy:
  • Avoid a "one size fits all" approach and adapt the intervention to meet the needs of the individual or particular group. 
  • Employ primarily positive strategies and focus on facilitating the desirable social behavior as well as eliminating the undesirable behavior. 
  • Emphasize the learning, performance, generalization, and maintenance of appropriate social behaviors through modeling, coaching, and role-playing
  • Provide social skills training and practice opportunities in a number of settings with different individuals in order to encourage students to generalize new skills to multiple, real life situations. 
  • Use assessment strategies, including functional assessments of behavior, to identify children in need of more intensive interventions as well as target skills for instruction. 
  • Enhance social skills by increasing the frequency of an appropriate behavior in "normal" or typical environments to address the naturally occurring causes and consequences. 
  • Include parents and caregivers as significant participants in developing and selecting interventions (they can help reinforce the skills taught at school to further promote generalization across settings).
The type of skill deficit (performance deficit versus skill deficit) should also be considered when developing a social skills intervention plan. A performance deficit refers to a skill or behavior that is present but not demonstrated or performed, whereas a skill acquisition deficit refers to the absence of a particular skill or behavior. School professionals should make an intensive effort to systematically match the intervention strategy to the type of skill deficit exhibited by the child. For instance, if the child lacks the skills necessary to join in an interaction with peers, an intervention strategy should be selected that promotes skill acquisition. In contrast, if the child has the skills to join in an activity but regularly fails to do so; a strategy should be selected that enhances the performance of the existing skill.
Social relationship skills are critical to successful social, emotional, and cognitive development and to long-term outcomes for students. Thus, systematic social skills instruction should be considered a critical component of treatment for children with autism. Teaching social skills can have both preventive and remedial effects that can help reduce the risk for negative outcomes not only for children on the autism spectrum, but for all children.  

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