Tuesday, October 17, 2017

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). 

Questionnaires are the most frequently used methods of measuring RRBs. For example, the broad-based 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 Repetitive Behavior Questionnaire-2 (RBQ-2; Leekam et al., 2007) 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).

© 2017 Lee A. Wilkinson, PhD

Monday, October 16, 2017


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Sunday, October 1, 2017

The Crisis in Mental Health Services for Young Adults on the Autism Spectrum

The Crisis in Mental Health Services

The dramatic increase in the prevalence of autism spectrum conditions among children over the past decade indicates that a correspondingly large number of youth will be transitioning to adulthood in the coming years. It is estimated that more than 50,000 adolescents with autism will turn 18 years old this year in the U.S. As these numbers continue to rise, there is an urgent need to address the mental health issues faced by many adults on the autism spectrum.
Although we know that children with autism grow up to be adults with autism, there are fewer mental health services available for adults on the spectrum, particularly for individuals who are not intellectually challenged. A review in the open access journal, Autism Research and Treatment, highlights the service needs and the corresponding gaps in care for this population. The authors posit that the mental health system is in crisis and that although the rates of mental health issues for adults on the spectrum is high, accessing services to address these symptoms remains difficult. Poor recognition tends to occur for a number of different reasons, including restrictive intake criteria, misdiagnosis, limited knowledge or awareness of autism spectrum conditions, clinicians who lack confidence or experience in caring for this group of adults, and the belief that other service providers will provide this care. Consequently, many adolescents and adults on the autism spectrum, because of their diagnosis, are excluded from community mental health services, leaving them grossly underserved.
Mental Health Issues
Comorbid (co-occurring) psychiatric disorders are well documented in individuals with autism across the lifespan. Research suggests that a very high proportion of adults and teens on the spectrum present with co-occurring (comorbid) psychiatric conditions, particularly depression and anxiety. For example, recent studies examining psychiatric comorbidity in young adults with autism spectrum conditions found that 70% had experienced at least one episode of major depression, 50% had suffered from recurrent depressive episodes, and 50% met criteria for an anxiety disorder. Unfortunately, it appears that co-occurring psychiatric disorders and even the diagnosis of an autism spectrum condition itself often go unrecognized among more capable adolescents and adults on the spectrum seeking psychological or psychiatric care. Many youth and young adults report significant difficulties accessing healthcare services, particularly comprehensive health services. Part of the reason for this difficulty may stem from service providers feeling ill equipped to work with individuals with autism, particularly individuals with co-occurring mental health issues. As a result, adolescents and adults with autism spectrum conditions have access to significantly fewer programs than adolescents and adults with other types of developmental disabilities. Not surprisingly then, a consistent theme for parents of individuals with autism is the fear that their child will fall through the cracks when transitioning from child to adult services. Similar concerns have been voiced by the individuals on the spectrum themselves, who describe how their needs are infrequently recognized and the programs and services available are not designed for people with autism spectrum conditions in mind.
Adolescents and adults on the autism spectrum represent a complex and underserved population. Of the studies completed to date, findings suggest that this group of adolescents and adults faces a multitude of psychiatric and psychosocial issues, alongside significant challenges in accessing services. Social skills deficits for individuals on the spectrum persist into adulthood, and adults appear to be at an increased risk for developing depression and anxiety. Despite this, very few studies have examined treatment approaches and interventions (pharmacological and psychosocial) for adolescents and adults with autism spectrum conditions. While evidence is beginning to emerge for interventions targeting this population, including cognitive-behavioral therapy (CBT), mindfulness-based therapy (MBT), and social skills training (SST), further large-scale studies which compare the effectiveness of, for example, CBT or MBT versus other treatment options (e.g., medication, counseling, etc.) are required. Likewise, there is an immediate need for mental health clinicians who are trained to apply these techniques. In developing interventions, programs must also consider what adolescents and adults want. For example, adolescents and adults on the spectrum may be more interested in interventions which focus on vocational opportunities than interventions targeting social skills. Moreover, both individuals and their family must be viewed as valuable contributors and fully involved in this process. Lastly, researchers must look at issues of service cost and efficiency when evaluating the impact of interventions.
1. According to the U.S. Surgeon General, over the course of a year, approximately 20% of children and adolescents in the U.S. experience signs and symptoms of a mental health problem. Unfortunately, most children and youth who are in need of mental health services do not actually receive them. Psychological services should be expanded in schools to include a major focus on the delivery of mental health services to all students. 
2. Developmental disability agencies or agencies supporting individuals with autism spectrum conditions must partner with community mental health agencies to help train, mentor, and build capacity to care for this group across the lifespan. It is important to note that many clinicians working within community mental health agencies already have the skills to effectively deliver this care, but programs either preclude their ability to do so or they lack the confidence to work with this population.
2. There is a critical need for community mental health agencies to review their exclusion criteria to include persons with autism spectrum conditions. For example, agencies providing care for persons with mood or anxiety disorders should not exclude individuals on the basis of a diagnosis of autism. Community mental health agencies have the resources and expertise in mental health, along with the programs to deliver services for individuals with mental health issues (e.g., vocational programs, counseling, and therapies), but will need guidance from developmental disability agencies to successfully adapt these programs for adults on the autism spectrum.
3. Developmental disability agencies must reevaluate their inclusion criteria to include persons with autism spectrum conditions, regardless of IQ, and across the lifespan. Organizations must work together, combining expertise in autism from developmental disability agencies with knowledge and resources from community mental health agencies.
4. There is a need to study and identify programs and supports that are most effective in both school and community settings. This will require a full continuum of mental health services including counseling, vocational training, supported employment, inpatient services, and outpatient services. It will also require a network of experienced clinicians and community partners. Many of these efforts are already underway in pediatric settings; however, these same efforts are required in adolescent and adult mental health services.
5. Finally, there is a need to prepare and equip older youth with autism spectrum conditions for the transition to adult services.
Johanna K. Lake, J. K., Perry, A., & Lunsky, Y. (2014). Mental Health Services for Individuals with High Functioning Autism Spectrum Disorder. Autism Research and Treatment, Volume 2014, Article ID 502420. http://dx.doi.org/10.1155/2014/502420
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 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 SchoolsHis latest book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition).

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