Wednesday, December 20, 2017

Autism: Parent Acceptance and Empowerment


Parents are often overwhelmed by the challenges presented by a child with autism. Research has shown that parents of children on the spectrum exhibit a characteristic stress profile which includes anxiety related to the child's uneven intellectual profiles, deficits in social relatedness, disruptive and maladaptive behaviors (internalizing and externalizing problems) and long-term care concerns. Among these stressors, the child’s maladaptive behavior profile is most reliably linked to parent stress. 

Studies indicate that raising children with autism is associated with higher levels of parenting stress and psychological distress than parenting typically developing children, children with a physical disability, or children with developmental delays without autism. Mothers, in particular, appear to face unique challenges related to the characteristics of autism. 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.
Increased attention is now being given to the psychological well-being of parents of children and youth with autism. A number of studies have examined the factors that can influence the impact of children’s problem behavior on parent mental health. A study in the Journal Autism examined the relationships between child problem behavior, parent mental health problems, psychological acceptance (e.g., accepting and not being adversely influenced by negative emotions and thoughts that a parent may have about their child), and parent empowerment (e.g., actively attempting to change or eliminate potentially stressful events through the application of knowledge and skills).
The researchers found that the more positive parents’ psychological acceptance and empowerment, the less they reported severe mental health problems. Although greater parent empowerment was associated with fewer parent mental health problems, psychological acceptance had the greatest impact on parent mental health problems, after controlling for ASD symptomatology, negative life events, parent and child gender, and child age. 
This study has several important implications. The relatively chronic nature of behavior problems in children with autism may explain why acceptance is a more significant psychological construct for explaining parent mental health than is empowerment. If difficulties are manageable and support readily available, then an active, problem-focused coping style would be related to improved parent adjustment. However, for children with autism who exhibit more persistent behavior problems, or for highly stressed and frustrated parents, a problem-focused process may not be enough to ensure positive parent adjustment. If problems are less controllable and/or support less accessible, it may be impossible for parents to focus exclusively on trying to change or avoid their current experience. The authors comment, “In these situations, parents need a different coping strategy, one that allows them to acknowledge their current experience without trying to change it or avoid it.”  Therefore, it may be critically important to understand and evaluate the situation of the family, and offer parents both types of coping skills (acceptance and empowerment) for use across different situations.
Importantly, this study supports the exploration of acceptance and mindfulness-based interventions as effective approaches for parents of children with autism and underscores the importance of considering the parent psychological experience when developing treatments for child problem behavior. The authors conclude, “Child-focused therapy should not focus exclusively on the child. At the same time that we provide parents with skills and supports to improve their children’s experience, we must also invest in helping parents to deal with their own emotions and coping strategies. 
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).

Friday, December 1, 2017

Holiday Tips for Parents of Kids on the Autism Spectrum


The holiday season can be a stressful time of year for everyone, especially for parents of children on the autism spectrum. The sights and sounds of the holidays can be stressful and over-stimulating. There are many changes in routine, family events, parties, and vacations that need to be planned. Sometimes the stress of these changes can become overwhelming and the joy and happiness of the holidays might be lost. Here are some helpful tips to lessen your child’s anxiety and increase your family’s enjoyment of the holiday season: 

 Decorating and Shopping  
  • If your child has difficulty with change, you may want to gradually decorate the house. Decorate in stages, rather than all at once. It may also be helpful to develop a visual  schedule or calendar that shows what will be done on each day.
  • Allow your child to interact with the decorations and help put them in place.
  • Flashing lights or musical decorations can disturb some children. To see how your child will respond, provide an opportunity experience these items in a store or at elsewhere first. 
  • Last minute holiday shopping can be stressful for children who rely on routines. If you do take your child shopping, allow enough time to gradually adapt to the intense holiday stimuli that stores exhibit this time of year.
 Family Routines and Travel
  • Meet as a family to discuss how to minimize disruptions to established routines and how to  support positive behavior when disruptions are inevitable. 
  • Continue using behavior support strategies during the holidays. For example, use social stories to help your child cope with changes in routine and visual supports to help prepare for more complicated days.
  •  Use a visual schedule if you are celebrating the holidays on more than one day to show when there will be parties/gifts and when there will not. 
  • Use rehearsal and role play to give children practice ahead of time in dealing with new social situations, or work together to prepare a social story that incorporates all the elements of an upcoming event or visit to better prepare them for that situation 
  • If you are traveling for the holidays, make sure you have child’s favorite foods, books or toys available. Having familiar items readily available can help to calm stressful situations. 
  • If you are going to visit family or friends, make sure there is a quiet, calm place to go to if needed. Teach your child to leave a situation and/or how to access support when a situation becomes overwhelming. For example, if you are having visitors, have a space set aside for the child as his/her safe/calm space. He or she should be taught ahead of time that they should go to their space when feeling overwhelmed. This self- management strategy will also be helpful in future situations.
 Gifts and Play Time
  • If you put gifts under the Christmas tree, prepare well ahead of time by teaching that gifts are not to be opened without the family there. Give your child a wrapped and a reward for keeping it intact. 
  • Practice unwrapping gifts, taking turns and waiting for others, and giving gifts. Role play scenarios with your child in preparation for him/her getting a gift they may not want 
  • Take toys and other gifts out of the box before wrapping them. It can be more fun and less frustrating if your child can open the gift and play with it immediately. 
  • When opening gifts as a family, try passing around an ornament to signal whose turn it is to open the next gift. This helps alleviate disorganization and the frustration of waiting. 
  • Prepare siblings and young relatives to share their new gifts with others. 
  • If necessary, consider giving your child a quiet space to play with his/her own gifts, away from the temptation of grabbing at other children’s toys 
  • Prepare family members for strategies to use to minimize anxiety or behavioral incidents, and to enhance participation. Provide suggestions ahead of time that will make for a less stressful holiday season. 
  • Keep an eye out for signs of anxiety or distress, including an increase in behavior such as humming or rocking - this may indicate it's time to take a break from the activity.
  •  Understand how much noise and other sensory input your child can manage. Know their level of anxiety and the amount of preparation it may require. 
  • Try to relax and have a good time. Do everything possible to help reduce the stress level for your child and family during the holidays. If you are tense your child may sense that something is wrong. Don’t forget to prepare yourself! A calm and collected parent is better able to help their family enjoy this wonderful time of year.

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).

Friday, November 17, 2017

Best Book Awards - A Best Practice Guide to Assessment & Intervention for Autism Spectrum Disorder in Schools


A Best Practice Guide to Assessment & Intervention for Autism Spectrum Disorder in Schools (2nd Edition) has been selected as an Award-Winning Finalist in the "Education/Academic" category of the 2017 Best Book AwardsFully updated to reflect current assessment tools, procedures and research, this award-winning book provides a practical and scientifically-based approach to identifying, assessing, and treating children and adolescents with an Autism Spectrum Disorder (ASD) in school settings. Integrating current research evidence with theory and best practice, each chapter features a consolidated and integrative description of best practice assessment and intervention approaches for children and youth with ASD. It brings the topics of assessment and intervention together in a single authoritative resource guide consistent with recent advances in evidence-based practice.  Illustrative case examples, glossary of terms, and helpful checklists and forms make this the definitive resource for identifying and implementing interventions for school-age children and youth with ASD.

This Guide is intended to meet the needs of school-based professionals such as school psychologists, counselors, speech/language pathologists, occupational therapists, counselors, social workers, administrators, and both general and special education teachers. Parents, advocates, and community-based professionals will also find this guide a valuable and informative resource.

                                          
Editorial Reviews  

“It is rare that one book can pack so many resources and easy to digest information into a single volume!  Families, school personnel, and professionals all need the extensive, and up-to-date tips, guides, and ‘must-knows’ provided here. It’s obvious the author is both a seasoned researcher and practitioner – a winning combination.” — Dr. Debra Moore, psychologist and co-author with Dr. Temple Grandin, of The Loving Push: How Parents & Professionals Can Help Spectrum Kids Become Successful Adult 

“Dr Wilkinson has done it again. This updated and scholarly Second Edition reflects important recent changes regarding diagnosis and services for students with Autism Spectrum Disorder. With its numerous best-practice suggestions, it is a must-read for school psychologists, school social workers, and those who teach in general and special education.” — Dr Steven Landau, Professor of School Psychology in the Department of Psychology, Illinois State University 

“This book is an essential resource for every educator that works with students with ASD! The easy-to-read format is complete with up to date research on evidence-based practices for this population, sample observation and assessment worksheets and case studies that allow the reader to apply the information presented.” — Gena P. Barnhill, PhD, NCSP, BCBA-D, LBA, Director of Special Education Programs at Lynchburg College, Lynchburg, VA  

Availability

A Best practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition) is available from Jessica Kingsley PublishersAmazon.comBarnes & NobleBooks-A-MillionBook DepositoryTarget.com,Walmart.comand other booksellers. The book is available in both print and eBook formats.
Author
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. He is also a university educator and school psychology trainer. His research and professional writing has focused primarily on behavioral consultation and therapy, and evidence-based practice in assessment and intervention for autism spectrum disorder. He has published numerous journal articles on these subjects both in the US and internationally. Dr. Wilkinson is author of the award-winning book,  A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools and 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 previous book, Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBT, was honored as an “Award-Winning Finalist in the “Psychology/Mental Health” category of the 2016 Best Book Awards.”

Monday, November 6, 2017

Transition Planning for Students with Autism

Transition Planning for Students on the Autism Spectrum
Once the young person with autism leaves the school system, the educational entitlements of the Individuals with Disabilities Education Improvement Act of 2004 (IDEA 2004) are no longer available. The need for supports and services to help adolescents transition to greater independence has become a critical issue as a growing number of youth face significant challenges, with many on the spectrum unemployed, isolated, and lacking services (Orsmond, Shattuck, Cooper, Sterzing, & Anderson, 2013). Research indicates that outcomes are almost universally lower for youth on the autism spectrum compared to their peers. According to the National Autism Indicators Report: Transition into Young Adulthood (Roux, Shattuck, Rast, Rava, & Anderson, 2015): (a) only about one in five lived independently (without parental supervision) in the period between high school and their early 20s; (b) approximately 26 percent of young adults and 28 percent of those unemployed and not in school received no services which could help them with employment, continue their education, or live more independently; (c) Over one-third (37 percent) of young adults were disconnected during their early 20s, meaning they never got a job or continued education after high school; and (d) transition planning, a key process for helping youth build skills and access services as they enter adulthood, was frequently delayed. Just 58 percent of youth had a transition plan by the federally required age.
The Transition Plan
The transition from school to adulthood is a process that begins when students and their parents begin planning for their post high school life. A transition plan is critical for young people with autism to be successful and participate to the fullest extent possible in society. The focus of intervention planning must shift from addressing the core deficits in childhood to promoting adaptive behaviors that can facilitate and enhance functional independence and quality of life in adulthood. This includes new developmental challenges such as independent living, self-advocacy, vocational engagement, postsecondary education, and family support.
IDEA requires that transition plan activities for students with disabilities begin no later than the first IEP to be in effect when the child turns 16, or younger if determined appropriate by the IEP team or state education agency. Transition services are a coordinated set of activities that focus on improving the academic and functional achievement of the student with a disability to facilitate the movement from school to post-school activities, including postsecondary education, vocational education, integrated employment (as well as supported employment); continuing and adult education, adult services, independent living, or community participation. Responsibilities of the IEP team include coordinating communication and services between school and community-based service providers; addressing environmental, sensory, behavioral and/or mental health concerns; identifying potential careers and employers; and teaching work behaviors, job skills, and community living skills (Virginia Department of Education, 2010). Just as with other educational services in a student’s IEP, schools must provide the services necessary for the student to achieve the transition goals stated in the IEP. The IEP must include: (a) appropriate measurable postsecondary goals based upon age-appropriate transition assessments related to training, education, employment and, where appropriate, independent living skills; (b) the transition services (including courses of study) needed to assist the child in reaching those goals; and (c) beginning not later than one year before the child reaches the age of majority under state law, a statement that the child has been informed of the child’s rights under Part B, if any, that will transfer to the child on reaching the age of majority. The school must also invite the student to his or her IEP meeting if a purpose of the meeting will be the consideration of the postsecondary goals for the child and the transition services needed to assist the child in reaching these goals (IDEA, 2004).
Conclusion
Students with autism face significant challenges as they transition to adulthood. Postsecondary outcome studies reveal poor long-term outcomes in living arrangements, employment, and community integration when compared to their peers with other types of disabilities. Research indicates that many are socially isolated and that the vast majority of young adults with ASD will be residing in the parental or guardian home during the period of emerging adulthood (Anderson, Shattuck, Cooper, Roux, & Wagner, 2014; Orsmond, Shattuck, Cooper, Sterzing, & Anderson, 2013). A consistent theme for parents of adolescents with autism is the fear that their child will “fall through the cracks” when transitioning from child to adult services. Unfortunately, access to needed supports and services drops off dramatically after high school - with many receiving little or no assistance.
As we know, no two people on the autism spectrum are alike. The characteristics, strengths and challenges, and severity of impairments vary widely across individuals. Support and service needs also differ and continually change as individuals with autism age. Comprehensive transition planning and support for students leaving high school and exiting special educational programming, each with unique strengths, interests, and challenges, is an urgent task confronting our communities and schools (Roux, Shattuck, Rast, Rava, & Anderson, 2015). Greater emphasis must be placed on transition planning as a key process for helping youth build skills and access services as they leave school and enter adulthood. This includes a focus on independent living skills, self-advocacy, vocational engagement, postsecondary education, family support, and a continuum of mental health services for those experiencing comorbid (co-occurring) mental health problems (Lake, Perry, & Lunsky, 2014). 

Image courtesy of http://advocacyinaction.net/autism-preparing-your-child-for/
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.
Anderson, K. A., Shattuck, P. T., Cooper, B. P., Roux, A. M., & Wagner, M. (2014). Prevalence and correlates of postsecondary residential status among young adults with an autism spectrum disorder. Autism, 18, 562-570.  doi: 10.1177/1362361313481860
Individuals with Disabilities Education Improvement Act of 2004. Pub. L. No. 108-446, 108th Congress, 2nd Session. (2004).
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. doi:10.1155/2014/502420
Orsmond, G. I., Shattuck, P. T., Cooper, B. P., Sterzing, P. R., & Anderson, K. A. (2013). Social participation among young adults with an autism spectrum disorder. Journal of Autism and Developmental Disorders, 43, 270-2719. doi 10.1007/s10803-013-1833-8
Roux, A. M., Shattuck, P. T., Rast, J. E., Rava, J. A., & Anderson, K. A. (2015). National Autism Indicators Report: Transition into Young Adulthood. Philadelphia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University. Available from http://drexe.lu/autismindicators
Ohio Center for Autism and Low Incidence (OCALI). Transition to Adulthood Guidelines.
http://www.ocali.org/project/transition_to_adulthood_guidelines
Virginia Department of Education, Office of Special Education and Student Services (October, 2010). Autism Spectrum Disorders and the Transition to Adulthood.
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. Philadelphia & London: Jessica Kingsley Publishers.
Wrightslaw. Transition Planning. http://www.wrightslaw.com/info/trans.index.htm
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, 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). 
Assessment

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

FOUR "MUST HAVE" AUTISM SPECTRUM BOOKS



         http://amzn.to/2jcegH0  -  A Best Practice Guide to Assessment and
          Intervention for Autism Spectrum Disorder in Schools (2nd Edition)

         http://amzn.to/2gt7U7g  -  A Best Practice Guide to Assessment and 
          Intervention for Autism and Asperger Syndrome in Schools (1st Edition)

          http://amzn.to/2x4sXRr  -  Autism Spectrum Disorder in Children and   
          Adolescents: Evidence-Based Assessment and Intervention

          http://amzn.to/1Eeh85i  -  Overcoming Anxiety and Depression on the  
          Autism Spectrum: A Self-Help Guide Using CBT

                      Please visit: http://amazon.com/author/lee_a_wilkinson

         

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.
Conclusions
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.
Recommendations
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).

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 & Resources
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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