Thursday, September 14, 2017

Mothers of Children with Autism Experience High Levels of Stress and Fatigue

Mothers of Children with Autism Experience High Levels of Stress & Fatigue

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 affect family functioning and marital relationships compared with parents of children with other disabilities. Negative outcomes include: (a) increased risk of marital problems; (b) decrease in father’s involvement; (c) greater parenting and psychological distress; (d) higher levels of anxiety and depression; (f) added pressure on the family system; (g) more physical and health related issues; (h) decrease in adaptive coping skills; and (i) greater stress on mothers than fathers.

Mothers, in particular, may experience high levels of psychological distress, depressive symptoms, and social isolation. For example, research has found that nearly 40% of mothers reported clinically significant levels of parenting stress and between 33% and 59% experienced significant depressive symptoms following their child’s diagnosis of ASD. Challenges in obtaining a timely ASD diagnosis and lack of appropriate treatment services and education were contributors to parental stress and dissatisfaction. Likewise, research examining maternal stress, coping strategies, and support needs among mothers of children with ASD found that the most frequently reported important unmet needs were (1) financial support; (2) break from responsibilities; (3) rest/sleep; and (4) help remaining hopeful about the future. 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.

There is also evidence to suggest that compared with mothers of typically developing children, mothers of children with ASD reported significantly higher fatigue associated with poor maternal sleep quality, a high need for social support and poor quality of physical activity. Fatigue was significantly related to other aspects of well-being, including stress, anxiety and depression, and lower parenting efficacy and satisfaction. Symptoms of depression, anxiety, stress and worry (body tension, increased heart rate and rumination) can be mentally taxing and contribute to or exacerbate fatigue.

Implications

Research and anecdotal reports clearly indicate the need for interventions to specifically target parental stress and fatigue and its impact on families affected by ASD both in the present and longer term. Understanding parent perspectives and targeting parental stress is critical in enhancing well-being and the parent-child relationship. When families receive a diagnosis of autism, a period of anxiety, insecurity, and confusion often follow. Some autism specialists have suggested that parents go through stages of grief and mourning similar to the stages experienced with a loss of a loved one (e.g., fear, denial, anger, bargaining/guilt, depression and acceptance). Sensitivity to this process can help professionals provide support to families during the critical period following the child’s autism diagnosis when parents are learning to cope with feelings and navigate the complex system of autism services.
In addition to interventions targeting child-related problems, parents are likely to benefit from psycho-education about fatigue and its potential effects on well-being, 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. 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 also an important practice consideration. Future work 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 well-being. The longer-term benefits for parents in terms of strengthening their general health, welfare and parenting should also be a focus of research. Lastly, research is needed to develop an understanding of the experience of fathers in parenting a child on the autism spectrum.
                                                       Key References & Further Reading
Abidin, R. R. (2012). Parenting Stress Index (4th ed.). Lutz, FL: PAR.
Barnhill, G. P. (2014). Collaboration between families and schools. In L. A. Wilkinson (Ed.), Autism spectrum disorder in children and adolescents:  Evidence-based assessment and intervention in schools (pp. 219-241). Washington, DC: American Psychological Association.

Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X., & Abbott, R. (2009). Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism, 13, 375-387.

Feinberg, E., Augustyn, M., Fitzgerald, E., Sandler, J., Ferreira-Cesar Suarez, Z., Chen, N…Silverstein, M. (2014). Improving maternal mental health after a child’s diagnosis of autism spectrum disorder: Results from a randomized clinical trial. JAMA Pediatrics, 168(1), 40-46. doi:10.1001/jamapediatrics.2013.3445.

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

Kiami, S. R., Goodgold, S. (2017). Support Needs and Coping Strategies as
Predictors of Stress Level among Mothers of Children with Autism Spectrum Disorder. Autism Research and Treatment Volume 2017, Article ID 8685950, https://doi.org/10.1155/2017/8685950

Lee, G. K. (2009). Parents of children with high functioning autism: How well do they cope and adjust? Journal of Developmental and Physical Disabilities, 21, 93-114. doi:
10.1007/s10882-008-9128-2

National Autism Center. (2015). Evidence-based practice and autism in the schools: An educator’s guide to providing appropriate interventions to students with autism spectrum disorder (2nd ed.). Randolph, MA: Author

Pottie, C. G., & Ingram, K. M. (2008). Daily stress, coping, and well-being in parents of children
with autism: A multilevel modeling approach. Journal of Family Psychology, 22, 855-
864. doi: 10.1037/a0013604

Wagner, S. (2014). Continuum of services and individualized education plan process. In L. A.
Wilkinson (Ed.). Autism spectrum disorder in children and adolescents:  Evidence-based assessment and intervention in schools (pp. 173-193). Washington, DC: American Psychological Association.

Weiss, J. A., Cappadocia, M. C., MacMullin, J. A., Viecili, M., & Lunsky, Y. (2012). The impact of child problem behaviors of children with ASD on parent mental health: The mediating role of acceptance and empowerment. Autism, 16, 261-274. doi: 10.1177/1362361311422708

Pottie, C. G., & Ingram, K. M. (2008). Daily stress, coping, and well-being in parents of children
with autism: A multilevel modeling approach. Journal of Family Psychology, 22, 855-
864. doi: 10.1037/a0013604

Wilkinson, L.A. (2016). A best practice guide to assessment and intervention for autism spectrum disorder in schools (2nd edition). London and Philadelphia: Jessica Kingsley Publishers. 

Lee A. Wilkinson, PhD, NCSP is a licensed and nationally certified school psychologist, registered 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 CBT. 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, His latest book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition).


Wednesday, September 13, 2017

Catatonia in Autism Spectrum Disorder

What is autistic catatonia?
Catatonia is a complex neuro-psychological disorder which refers to a cluster of abnormalities in movement, volition, speech and behavior. In its extreme form, it is manifested as absence of speech (mutism), absence of movement (akinesia) and maintenance of imposed postures (catalepsy). Lesser degrees of these impairments, and various other abnormalities of posture, movement, speech and behavior, are also considered to be catatonic phenomena.  
Historically, the term catatonia has been associated with schizophrenia and psychoses, but it is now recognized that it can occur with a range of conditions, including autism spectrum disorder (ASD). For example, studies suggest that between 12-18% of individuals on the spectrum may present with varying levels of catatonia-like deterioration. Although overlapping or shared symptoms (e.g., mutism, echolalia, stereotypic speech and repetitive behavior) can present a diagnostic challenge, differences in age-of-onset between catatonia and ASD can help to discriminate between the two similar symptom profiles. Specifically, the age-of-onset of catatonic regression is typically observed at a later age than symptoms of ASD and occurs most often during adolescence and young adulthood. Stressful life events, loss of routine, interpersonal conflicts, anxiety and depression, and side effects of psychiatric medication may precipitate catatonia in adolescents and teens on the spectrum. Researchers have posited that some individuals may have an inherent vulnerability to developing catatonia, which becomes overt in response to stress.
Although the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) does not recognize catatonia as a separate disorder, it is included as a specifier for ASD to indicate the presence of comorbid (co-occurring) catatonia. The DSM-5 recognizes that it is possible for individuals with ASD to experience a marked deterioration in motor symptoms and display a catatonic episode with symptoms such as mutism, posturing, grimacing, and motoric immobility.
Symptoms of catatonia in autism
Early identification and diagnosis is critically important as autism-related catatonia can result in marked stress to families and can have a deleterious effect on the quality of life of the individual. Symptoms can progress to acute catatonia which is extremely difficult to treat and lead to total immobility, dependence on all aspects of daily living, and become life-threatening. Unfortunately, autistic catatonia is infrequently identified at an early stage, and often misdiagnosed and mistreated. Clinicians may not recognize the onset and gradual presentation of catatonic-like deterioration rather than the full-scale catatonic stupor state which is more easily identified and familiar to most mental health practitioners. Co-morbid catatonia should be considered as a possible diagnosis for an individual on the autism spectrum who who shows a change in pre-existing symptoms and a marked and obvious deterioration in: (a) movement; (b) volition; (c) level of activity; (d) speech; and (e) a regression in self-care, practical skills and independence compared to previous levels.
Specific indicators of an onset of autism-related catatonia may include any of the following:
  • increased slowness and freezing during actions
  • increase in repetitive movements and hesitations
  • difficulty in crossing thresholds and completing movements
  • marked reduction in speech or complete mutism
  • aggression, extreme negativity, and difficulty initiating actions
  • increased reliance on physical or verbal prompts for functioning
  • increase in repetitive and ritualistic behaviors
  • grimacing, odd gait, and stiff, locked postures
  • impulsivity, bizarre behavior, excitement, and purposeless agitation
Treatment
There is little research evidence to guide medical treatment of autism-related catatonia. The current medical treatment algorithm for catatonia-like deterioration in ASD recommends the use of benzodiazepines, commonly lorazepam, and electroconvulsive therapy (ECT) for cases with acute catatonic stupor or cases where other approaches have been ineffective. Unfortunately, there is a lack of controlled studies examining the medical treatment of catatonic symptoms in ASD. The existing literature is limited to single-case designs and reflects serious methodological limitations. Likewise, studies have not examined the side-effects of these treatments and infrequently report long term follow-up of effects. As a result, there is little robust evidence to support any specific treatment.
There is some evidence that when catatonic symptoms in ASD become chronic a psychological treatment approach, co-occurring with medical treatments, is useful to support the management of the individual, particularly for parents and caregivers. This non-medical treatment paradigm is based on a comprehensive psychological assessment which focuses on identifying stressful life event(s), locating and eliminating any potential causes such as psychiatric medications, and restructuring the environment to effectively reduce the source(s) of the stressors. This approach is also designed to help parents and caregivers understand and conceptualize the catatonic syndrome and to work with caregivers and multi-disciplinary teams to implement a treatment/intervention plan. In addition, the use of prompts as external stimuli and physical activities, especially routine and structure are emphasized. This psychological approach can be helpful whether used together with or independently of medical treatments.
Conclusion
Given the paucity of information in the literature, it is important to recognize and diagnose autism-related catatonia as early as possible so that treatment and symptom management can be implemented. Thus, it is critically important for clinicians, autism professionals, educators, parents and caregivers to be aware of the symptoms of catatonia-like deterioration in teens and adults on the autistic spectrum. Catatonia should be assessed in any individual with ASD when there is a change in pre-existing symptoms and an obvious and marked deterioration in movement, pattern of activities, self-care, and practical skills, compared with previous levels, through a comprehensive diagnostic evaluation of medical and psychiatric symptoms. Possible physical or psychological causes should be investigated, and treated. There is some indication that screening for catatonic features and providing early support might reduce later incidence of catatonic deterioration in people with ASD. Lastly, there is an urgent need for controlled, high-quality studies examining the potential causes and treatment protocols for this underidentified and misunderstood autism-related condition. 

Key References & Further Reading
http://network.autism.org.uk/good-practice/evidence-base/catatonia-and-catatonia-type-breakdown-autism
https://www.autismspeaks.org/blog/2014/01/03/does-our-teen-have-autism-related-catatonia
DeJong, H., Bunton, P., & Hare, D. (2014).  A Systematic Review of Interventions Used to Treat Catatonic Symptoms in People with Autistic Spectrum Disorders. Journal of Autism & Developmental Disorders. Vol 44: 2127-2136.
Dhossche, D., Shah, A., & Wing, L. (2006). Blueprints for the Assessment, Treatment, and Future Study of Catatonia in Autism Spectrum Disorders. Catatonia in Autism Spectrum Disorders. International Review of Neurobiology Vol 72 P.268-283. Elsevier Inc. USA.
Ghaziuddin, N., Dhossche, D., & Marcotte, K. (2012). Retrospective Chart Review of Catatonia in Child and Adolescent Psychiatric Patients. Acta Psychiatrica Scandinavic, a, 125(1), 33-38.
Shah, A. & Wing, L. (2006). Psychological Approaches to Chronic Catatonia-Like Deterioration in Autism Spectrum Disorders. Catatonia in Autism Spectrum Disorders. International Review of Neurobiology Vol 72 P.245-260. Elsevier Inc. 

Wing, L. & Shah, A. (2000) Catatonia in autistic spectrum disorders. British Journal of Psychiatry. Vol. 176, 357-362.

Lee A. Wilkinson, PhD, NCSP is a licensed and nationally certified school psychologist, registered psychologist, and certified cognitive-behavioral therapist. He provides consultation services and best practice guidance to school systems, agencies, advocacy groups, and professionals on a wide variety of topics related to children and youth with autism spectrum disorder. Dr. Wilkinson 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 CBT. 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. His latest book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition).

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