Thursday, October 4, 2018

Autism and Family-Centered Practice in Schools


 Parent Perspectives and Need for Support
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 which adversely affects family functioning and marital relationships compared with parents of children with other disabilities. It is well established that social support is protective of optimal parent well-being and, therefore, a key element of intervention and treatment. Supporting and ensuring the family system’s emotional and physical health is a critical component of best practice.
 School professionals working with families of children with an ASD should be aware of the negative effects of stress and anxiety and assist in offering services that directly address parental needs and support mental health. 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. Parents often experience stress as they decide how to allocate their attention and energy across family members. For example, they may feel guilty about the limited time they spend with their spouse and other children, when so much of their attention is focused on the child with ASD.
Understanding parent perspectives and targeting parental stress is critical in enhancing well-being and the parent-child relationship. School professionals who have knowledge and understanding of the stressors parents face are able to provide more effective assistance and support to the family. 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 school professionals provide support to families during the critical period following the child’s autism diagnosis when parents are learning to navigate the complex system of autism services.
Mothers, in particular, may experience high levels of psychological distress, depressive symptoms, and social isolation. 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. Frequently reported important unmet needs include (1) financial support; (2) break from responsibilities; (3) rest/sleep; and (4) help remaining hopeful about the future.
Family-Centered Practice: Support, Educate, Advocate

School professionals can support parents by educating them about ASD; provide guidance and training; assist them in obtaining access to resources; offer emotional support by listening and talking through problems; and help advocate for their child’s needs. It is especially important to acknowledge the value of parents’ unique and important perspective, validate their observations and concerns, and reinforce their roles as important contributors to the educational process. Professionals should also help the family understand what the identification or diagnosis of ASD means and what the next steps are in addressing the issues of support and educational planning. This includes helping parents achieve a better understanding of how their child thinks and learns differently and become familiar with strategies that might help both at home and school. For example, parents can be taught evidence-based strategies that successfully support their children with ASD. Parent-implemented interventions have the potential to improve the child’s communication skills and reduce aggression and disruptive behaviors, as well as increase the functioning of the family system. Parents can learn to implement story-based interventions, visual supports/schedules, and Pivotal Response Treatment (PRT) strategies in their home and/or community through individual or group training formats. Professionals can also assist families by offering parent training in behavior management, which has been shown to increase parents’ self-efficacy and decrease their child’s problematic behaviors. Establishing a school-based parent support group may also be consideration.
Another major strategy for helping families with children with ASD is providing information on the access to ongoing supports and services. This includes publicly funded, state-administrated programs such as early intervention, special education, vocational and residential/living services, and respite services. Professionals and family advocates need to be aware of the various programs and their respective eligibility requirements and help parents to access these services. Parents will also need timely and appropriate information regarding their children’s programs and services and may have questions about long-term educational planning. It is important to openly communicate the student’s strengths and weaknesses and encourage parents to play an active role in developing and implementing intervention plans and IEPs. Professionals should also remember that parents have a life-long role in their child’s development and realize that the family’s needs will change over time, and that they have other family responsibilities in addition to their child with autism. When schools use a family-centered approach and work to increase parental involvement and support, not only do the parents and children benefit, but school personnel do as well.

Adapted from 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. 

Key References & Further Reading
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.

Hardan, A. Y., Gengoux, G. W., Berquist, K. L., Libove, R. A., Ardel, C. M., Phillips, J…Minjarez, M. B. (2015), A randomized controlled trial of Pivotal Response Treatment Group for parents of children with autism. Journal of Child Psychology and Psychiatry, 56, 884-892. doi: 10.1111/jcpp.12354

Hoffman, C. D., Sweeney, D. P., Hodge, D., Lopez-Wagner, M. C., & Looney, L. (2009)
Parenting stress and closeness: Mothers of typically developing children and mothers of children with autism. Focus on Autism and Other Developmental Disabilities, 24, 178-187.

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

Myers, S. M., & Johnson, C. P. (2007). Management of children with autism spectrum disorders. Pediatrics, 120, 1162-1182. doi: 10.1542/peds.2007-2362

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

Rogers, S. J., & Vismara, L. A. (2008). Evidence-based comprehensive treatments for early autism. Journal of Clinical Child & Adolescent Psychology, 37, 8-38.

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.

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.

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

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 disorders. 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 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).

Tuesday, September 25, 2018

Restricted & Repetitive Behavior (RRB) in Autism: Assessment & Future Directions

Restricted and Repetitive Behavior (RRB) in Autism

The DSM-5 criteria for autism spectrum disorder (ASD) include restricted and repetitive behavior (RRB) as a core diagnostic feature, together with the domain of social communication and social interaction deficits. RRBs include: (a) stereotyped or repetitive speech, motor movements, or use of objects; (b) excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (c) highly restricted, fixated interests that are abnormal in intensity or focus; and (d) hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment (American Psychiatric Association, 2013). Studies of RRBs have identified two sub-groups; one comprising repetitive sensory and motor behaviors (RSMB), such as repetitive hand or finger movements and rocking, and the other consisting of behaviors such as narrow interests, rigid routines, and rituals routines, which are collectively referred to as insistence on sameness (IS) (Bishop et al., 2013; Bishop, Richler, & Lord, 2006; Richler, Huerta, Bishop, & Lord, 2010).
Research indicates that repetitive behaviors may be among the earliest-emerging signs of autism (Wolff et al., 2014). There is also evidence to suggest that different types of RRB may be predictive of co-occurring mental health problems. For example, children with ASD who demonstrate high levels of ritualistic and sameness behavior have been found to show more severe symptoms of anxiety and depression (Stratis & Lecavalier, 2013). Parents of children and teens also report that RRBs are one of the most challenging features of ASD due to their significant interference with daily life. They can significantly impede learning and socialization by decreasing the likelihood of positive interactions with peers and adults. Given the importance of RRBs as a core feature of ASD, professionals should give increased attention to the assessment and presence of these behaviors, and their impact on the adaptability and psychological well-being of children and youth with ASD (Stratis & Lecavalier, 2013).
                                                                           Assessment
Rating scales and questionnaires are the most frequently used methods of measuring RRBs. For example, measures such as the Autism Spectrum Rating Scales (ASRS; Goldstein & Naglieri, 2010) and Social Responsiveness Scale (SRS-2; Constantino & Gruber, 2012) incorporate scales and treatment clusters assessing stereotypical behaviors, sensory sensitivity, and highly restricted interests characteristic of ASD. There are also specialized parent/caregiver questionnaires available that focus solely on restricted and repetitive behaviors and provide a more complete understanding of the impact of RRB factors on adaptive functioning. Of these questionnaires, the most commonly used are the Repetitive Behavior Scale-Revised (RBS-R; Bodfish, Symons, Parker, & Lewis, 2000) and the Repetitive Behavior Questionnaire-2 (RBQ-2; Leekam et al., 2007). Both cover a wide range of repetitive behaviors and were designed as a quantitative index of RRB, rather than relying exclusively on the above referenced broad-based ASD measures to assess RRBs. 
The RBS-R is a parent report of repetitive behaviors in children, adolescents, and adults with ASD. It consists of 43 items and includes the following subscales: Stereotyped Behavior, Self-Injurious Behavior, Compulsive Behavior, Ritualistic Behavior, Sameness Behavior, and Restricted Behavior. For each subscale, the number of items endorsed is computed as well as the severity score for the subscale. On the last question, respondents are asked to consider all of the behaviors described in the questionnaire, and provide a global severity rating.  The RBS-R has been reported to have adequate psychometric properties, and acceptable reliability and validity for each subscale (Bodfish et al., 2000; Boyd et al., 2010; Esbensen, Seltzer, Lam, & Bodfish, 2009; Gabriels, Cuccaro, Hill, Ivers, & Goldson, 2005; Lam & Aman, 2007).
The RBQ-2 is also a parent-completed 20-item questionnaire suitable for children (with or without autism) of all ages. Item responses fall into four groups which correspond to four specific areas: Repetitive Motor Movements, Rigidity/Adherence to Routine, Preoccupation with Restricted Interests, and Unusual Sensory Interests. Questionnaire scores can be added to provide a Total Repetitive Behaviors Score. As with previous research on RRBs, two clusters can be identified: RSMB, which corresponds to repetitive motor movements and unusual sensory interests, and IS, which corresponds to adherence to routine and restricted interests. The reliability and validity of the RBQ-2 has been supported with children and adolescents (Lidstone et al., 2014).
Future Directions

Restricted and repetitive behavior (RRB) is a core diagnostic feature of ASD. Although these behaviors present a major barrier to learning and social adaptation, most of the research on ASD has focused on social and communication deficits, with less attention given to the RRB symptom domain (Boyd, McDonough, & Bodfish, 2012; Leekam, Prior, & Uljarevic, 2011). Further research and is needed to better understand their development, expression, assessment, and related clinical features (e.g., cognitive ability, adaptive functioning, comorbid disorders) (Stratis & Lecavalier, 2013). For example, it is important to understand how RRBs in typical development vary across time in order to compare atypical trajectories in children with ASD across intellectual and adaptive levels. Future research should also be directed to understanding the RRB subtypes and their relationship to comorbid symptoms such as anxiety and depression. 
Compared to the relatively large number of evidence-based, behavioral interventions for the social communication and interaction symptoms of ASD, RRBs are less likely to be included in intervention planning. There is a need to develop evidence-based interventions that are effective in treating the continuum of repetitive behaviors in order to provide support in this domain and improve RRBs before these behaviors become well-established (Leekam et al., 2011). In terms of assessment, measures such as the RBS-R and RBQ-2 should be included in a comprehensive developmental assessment to provide a more complete understanding of specific RRBs and their impact on adaptive functioning, as well as inform intervention selection (see Wilkinson for a description of assessment domains and recommended measures). Lastly, it is important to provide parents with education and training on how to effectively address these inflexible and repetitive patterns of behaviors that affect their everyday lives.
Adapted from Wilkinson, L. A. (2016). A best practice guide to assessment and intervention for autism spectrum disorder in schools. London and Philadelphia: Jessica Kingsley Publishers.


Key References

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.) Washington, DC: Author.
Bishop, S.L., Hus, V., Duncan, A., Huerta, M., Gotham, K., Pickles, A., Kreiger, A., Buja, A., Lund, S., Lord, C. (2013). Subcategories of restricted and repetitive behaviors in children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43, 1287-97. doi:  10.1007/s10803-012-1671-0
Bodfish, J.W., Symons, F.J., Parker, D.E., & Lewis, M.H. (2000). Varieties of repetitive behavior in autism: Comparisons to mental retardation. Journal of Autism and Developmental Disorders, 30, 237–243.

Boyd, B. A., McDonough, S. G., & and Bodfish, J. W. (2012). Evidence-based behavioral interventions for repetitive behaviors in autism. Journal of Autism and Developmental Disorders, 42(6), 1236-1248. doi:10.1007/s10803-011-1284-z
Esbensen, A. J., Seltzer, M., Lam, K., & Bodfish, J. W. (2009). Age-related differences in restricted repetitive behaviors in autism spectrum disorders. Journal of Autism and Developmental Disorders, 39, 57–66. doi:10.1007/s10803-008-0599-x
Lam, K. S. L. & M. G. Aman (2007). The Repetitive Behavior Scale-Revised: Independent validation in individuals with autism spectrum disorders. Journal of Autism and Developmental Disorders, 37(5): 855-866.
Leekam, S, Tandos, J., McConachie, H., Meins, E., Parkinson, K., Wright, C…Le Couteur, A. (2007). Repetitive behaviours in typically developing 2-year-olds. Journal of Child Psychology and Psychiatry, 48, 11, 1131-1138.
Leekam, S. R., Prior, M. R., & Uljarevic, M. (2011). Restricted and repetitive behaviors in autism spectrum disorders: A review of research in the last decade. Psychological Bulletin, 137, 562–593. doi: 10.1037/a0023341
Stratis, E. A., & Lecavalier, L. (2013). Restricted and repetitive behaviors and psychiatric symptoms in youth with autism spectrum disorders. Research in Autism Spectrum Disorders, 7, 757–766.
Wolff, J.J., Botteron, K. N., Dager, S.R., Elison, J. T., Estes, A. M., Gu, H…Piven, J. (2014). Longitudinal patterns of repetitive behavior in toddlers with autism. Journal of Child Psychology and Psychiatry, 55, 945-53. doi: 10.1111/jcpp.12207
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 disorders. 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 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).

© 2018 Lee A. Wilkinson, PhD

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