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 conditions. 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.
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.
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, NCSP is a licensed and nationally certified school psychologist, chartered psychologist, and certified cognitive-behavioral therapist. He is author of the award-winning books, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools and Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBTHe 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. His latest book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition).


Connie Hammer said...

As a professional who coaches parents I always address the importance of self-care with them, especially those of children with autism. I appreciate your article which helps support the fact that parents of children on the autism spectrum do suffer from more fatigue. Therefore, it is imperative that all professionals address this when working with this population. Educating parents about the impact their well-being has on their children and assessing the severity of their fatigue and the level of their self-care is crucial for helping these families thrive. Taking the next step of creating a plan to address each issue that is draining energy from the family system and finding ways to add additional layers of support is imperative as well. The autism journey is a long and arduous one that will only be successful if we provide adequate supports to the parents as well as the child. We have to make sure the parents have their oxygen masks on before they can help their child with theirs.

Psychologist's blog said...

Not only as a Researcher ,professional and also as a mother of an autistic child,its very true whats there in the above article..because of psychological stress and anxiety even the parents are also experiencing the physical ailments and harmonal ups n downs such as Thyroidism,hypertension ,diabetes etc., etc.,That's the reason i usually advice parents of children with PDDS to cultivate or engage with some fine-art..especially music..which relaxes the parent aswellas the autistic child..and also making them aware of making use of the leisuretime activities of their "autistic children in an artistic way"!

Unknown said...

The sad reality of this is that most mothers are completely aware of the importance of their personal well being and the impact of fatigue. The support is just not there. Many marriages fail due to the fact that not only is the couple under an extraordinary amount of stress raising a child with special needs, but there often is a disconnect between the couple and lack of understanding of what the primary caregiver needs to maintain optimum mental and physical health. . Factor in that extended families usually high tail it too. This is most certainly a topic that needs to be talked about often.

Douglas Baker said...

Not to mention the financial burden that it places on probably 9 out of 10 families... There is this tremendous.., resistance to accept and communicate the needs and challenges we as parents face. We have to face to real world to work, live, play and grow. We also are pulled by our special needs world, where, whatever the condition, we are part of that special needs world that is just as blessed, but is often made to feel shameful in a sense and isolated.
This was never part of the plan - I can't tell you how many hundreds of times I have heard this from other families (yet alone from myself). The unknown future of our adult special needs member(s), as well as our own is scary to face and come to grips with. You thought facing the unknowns in the school years was the hard part ??
Great info Lee... Thank you sir.

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