Tuesday, May 30, 2017

Best Practice Review: The Gilliam Autism Rating Scale: Second Edition (GARS-2)

Best Practice Review: The Gilliam Autism Rating Scale: Second Edition (GARS-2)

The GARS-2 is a revision of the widely used Gilliam Autism Rating Scale (GARS). It was designed to assist psychologists, teachers, parents, and clinicians in identifying and diagnosing autism in individuals aged 3 through 22 and in estimating the severity of the disorder. The GARS-2 can be individually administered in 5 to 10 minutes and consists of 42 items describing the characteristic behaviors of persons with autism. The items are grouped into three subscales based on two definitions of autism, one from the Autism Society of America and the other from the diagnostic criteria for autistic disorder published in the DSM-IV-TR: (1) Stereotyped Behaviors, (2) Communication, and (3) Social Interaction. The subscale standard scores are summed to produce an Autism Index (mean = 100, SD = 15). Higher standard scores and Autism Indices are indicative of more problematic behavior. Scoring also includes a Probability of Autism classification (Very Likely, Possibly, Unlikely). 

According to the test manual, the second edition reflects several positive changes such as: (a) updated, more clearly described norms; (b) rewriting of some items and the scoring guidelines to improve clarity; and (c) a section that provides specific item definitions and examples for applied behavior analysis and research projects. New to the second edition is a structured interview form for gathering diagnostically important information from the child's parents that replaces the Early Development subscale found in the original version. The GARS-2 was normed on a representative sample of 1,107 persons with autism from 48 states within the United States. Demographic characteristics of the normative sample are keyed to the 2000 U.S. Census data. Few changes were made to GARS test items in developing the GARS-2. The difference between versions exists mostly on the fourth subscale, labeled ‘Developmental Disturbance’ on the GARS and ‘Parent Interview’ on the GARS-2.

Past reports of the GARS and GARS-2 have generally found low sensitivity and specificity, and thus indicate limited clinical utility. Independent studies on the first version of the instrument have indicated less than optimal psychometric properties, with sensitivity values ranging from .38 to .53. Sensitivity is the percentage of true cases correctly identified by a screen; a sensitivity value of .80 is the accepted standard. Although there may be some psychometric support for the use of the GARS-2 as a screening tool, sensitivity estimates suggest that the instrument results in a high percentage of false negative results for ASD. For example, a recent empirical study of the GARS-2 screening sensitivity found that when it was completed by special education teaching staff, the Autism Index Score would likely miss one-third of cases with ASD. 

Despite the support reported in the GARS-2 manual, concerns have been noted regarding its test structure, standardization sample characteristics, online recruitment, and lack of diagnostic confirmation. A study of the validity of the GARS-2 three subscales did not support the subscale structure and suggests that the clinical utility of the scales is limited by factors related to item content and test development procedures, and that the Autism Index be interpreted with caution. The Probability of Autism classification also lacks a sound empirical basis and may be subject to misinterpretation. There are also questions regarding the normative sample. Group membership was determined via caregiver report of diagnosis and/or school classification. A number of participants (27%) were recruited from the Asperger Syndrome Information and Support website, suggesting that a portion of the sample may have included individuals with other pervasive developmental disorders. Moreover, diagnosis of participants was not confirmed by the ADI-R, ADOS, or a clinical evaluation. Although the norms are not based upon age, the underrepresentation of older children and young adults also suggests that practitioners need to use caution when using the instrument with individuals from these age groups. From a more positive perspective, the content of the GARS-2 reflects a number of behavioral characteristics associated with ASD which may help guide the user in understanding the core features of autism. 

According to the manual, the GARS-2 should be administered by professionals who have training and experience in working with individuals with autism such as school psychologists, educational diagnosticians, and autism specialists. Practitioners who are currently using or considering using the GARS/GARS-2 for making an autism diagnosis or assessing symptom severity should exercise caution due to significant weaknesses, including low sensitivity and questions concerning standardization and norming procedures. Although the GARS-2 may have utility as a general screening or supplementary tool for ASD, it should only be used with caution and clearly not in isolation. It is not recommended for inclusion as a core autism-specific instrument in a comprehensive developmental assessment battery for ASD or for making special education eligibility decisions. 
GARS-3

The most recent edition of the GARS (GARS-3) has undergone significant changes when compared with earlier versions of the instrument. The GARS-3 retained only 16 items from the previous version while adding 42 new items to the rating scale. It was also updated to reflect changes in the DSM-5 criteria. New normative data were collected in 2010-2011 that were consistent with demographic characteristics reported in the 2010 U.S. Census. A recent review of the test’s development and standardization advises examiners to use caution when using the GARS-3 to assess individuals between 20 and 22 as well as individuals from minority groups. A major validity concern is the test’s ability to differentiate between ASD and intellectual disability (ID). Preliminary research also suggests weak relationships between the GARS-3 Autism Index Score and the ADOS-2, and the GARS-3 Autism Index Score and CARS-2 T Score. Other concerns regarding the GARS-3 include the fact that most of the normed sample was taken as a web-based measure, rather than paper-and-pencil. Reviewers have also commented on inconsistencies between guidelines for response values in the manual and the summary/response form, which can lead to misinterpretations. Although the GARS-3 appears to represent some improvements over its predecessor, there is a need for independent empirical evaluation of the new edition’s diagnostic validity with population-based and clinically-referred samples to fully document the utility of the GARS-3 in a comprehensive developmental assessment for ASD. 

References

Garro, A. (2006). Review of the Gilliam Autism Rating Scale-Second Edition. Seventeenth mental measurements yearbook with Tests in Print, Buros Institute of Mental Measurement. Lincoln: University of Nebraska Press.

Gilliam, J. (2006). GARS-2: Gilliam Autism Rating Scale-Second Edition. Austin, TX: PRO-ED.

Gilliam, J. E. (2014). Gilliam Autism Rating Scale–Third Edition (GARS-3). Austin, TX: Pro-Ed.

Hampton, J., & Strand, P. (2015). A review of level 2 parent-report instruments used to screen children aged 1.5-5 for autism: A meta-analytic update. Journal of Autism and Developmental Disorders, 45(3). Advance online publication. doi: 10.1007/s10803-015-2419-4.

Hastings, K., & Campbell, J. M. (May 2016). An Initial Evaluation of the Validity of the Gilliam Autism Rating Scale-Third Edition (GARS-3) in a Clinical Sample. 2016 International Meeting for Autism Research. Baltimore, MD.

Hutchins, T. (2017). Test review of the Gilliam autism rating scale- third edition. J. F. Carlson, K.F. Geisinger, & J. L. Jonson (Eds.), The twentieth mental measurements yearbook [electronic version].
Karren, B. C. (2017). Test Review. Gilliam, J. E. (2014). Gilliam Autism Rating Scale–Third Edition (GARS-3). Austin, TX: Pro-Ed. Journal of Psychoeducational Assessment, Vol. 35(3) 342–346.

Lecavalier L. (2005). An evaluation of the Gilliam Autism Rating Scale. Journal of Autism and Developmental Disorders, 35, 795-805.

Mazefsky, C., & Oswald, D. (2006). The discriminative ability and diagnostic utility of the ADOS-G, ADI-R, and GARS for children in a clinical setting. Autism, 10(6), 533–549.

Norris, M., & Lecavalier, L. (2010). Screening accuracy of level 2 autism spectrum disorder rating scales: A review of selected instruments. Autism, 14, 263-284.
Pandolfi V., Magyar C. I., & Dill C. A. (2010). Constructs assessed by the GARS-2: factor analysis of data from the standardization sample. Journal of Autism & Developmental Disorders, 40, 1118-30. 
Volker, M. A., Dua, E. H., Lopata, C., et al., (2016). Factor structure, internal consistency, and screening sensitivity of the GARS-2 in a developmental disabilities sample, Autism Research and Treatment, vol. 2016, Article ID 8243079, 12 pages, 2016. doi:10.1155/2016/8243079
Wilkinson, L. A. (2017). A best practice guide to assessment and intervention for autism spectrum disorder in schools. Philadelphia & London: Jessica Kingsley Publishers.

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).

Behavior Support Plans for Learners with Autism


Positive Behavior Support Plans for Students with Autism

The problem behaviors of children on the autism spectrum are among the most challenging and stressful issues faced by schools and parents. The current best practice in treating and preventing unwanted or challenging behaviors utilizes the principles and practices of positive behavior support (PBS). PBS has been demonstrated to be effective with individuals across a wide range of problem behaviors and settings. 


Although used successfully both in the classroom and school-wide, PBS is not a specific intervention per se, but rather an approach that has evolved from traditional behavioral management methods. PBS refers to a set of research-based strategies that are intended to decrease problem behaviors by designing effective environments and teaching students appropriate social and communication skills. PBS utilizes primary (universal, school-wide), secondary (targeted group), and tertiary (individual support) levels or tiers of intervention, each level providing an increasing level of intensity and support. 
Functional Behavior Assessment (FBA)

An essential component of PBS is a functional behavior assessment (FBA) to help determine the events that influence and maintain an individual student’s persistent and challenging behavior. FBA methods are considered best practice in identifying and designing behavioral intervention plans for students who demonstrate serious problem behaviors that require more intensive and individualized supports. An important goal of a functional assessment is to identify antecedents or environmental situations that will predict the occurrence and nonoccurrence of the student’s challenging behavior. Another goal is to obtain and expand information that will improve the effectiveness and efficiency of intervention strategies. FBA identifies the function(s) that the behavior appears to serve for the student. For example, a student might exhibit challenging behaviors with the goal of escape or the goal of seeking attention. When the curriculum is difficult or demanding, he or she may attempt to avoid or escape work through challenging behavior (e.g., refusal, passive aggression, disruption, etc.). Similarly, they may use challenging behavior to get focused attention from adults and peers, or to gain access to a preferred object or participate in an enjoyable activity. Problematic behavior may also occur because of sensory aversions. Because students with ASD also have significant social and pragmatic skills deficits, they may experience difficulty effectively communicating their needs or influencing the environment. Thus, challenging classroom behavior may serve a purpose for communicating or a communicative function. Once we understand the function or goal of student behavior, we can begin to teach alternative replacement behavior and new interactional skills. 
The process of conducting an FBA is best described as (a) an strategy to discover the purposes, goals, or functions of a student’s behavior; (b) an attempt to identify the conditions under which the behavior is most likely and least likely to occur; (c) a process for developing a useful understanding of how a student’s behavior is influenced by or relates to the environment; and (d) an attempt to identify clear, predictive relationships between events in the student’s environments and occurrences of challenging behavior and the contingent events that maintain the problem behavior.   
An FBA can be conducted in a variety of ways. There are two general assessment tools to assist in the collection of information about the variables and events that surround the occurrence (or nonoccurrence) of the student’s challenging behavior. The first are interviews and rating scales that provide information from the individuals (parents, teachers) who know the student best, along with the student themselves. The second method is direct observation of the student in his or her natural daily environments. One observation strategy for collecting observational information is the A-B-C format. The observer records the Antecedent to the behavior (what happened immediately before the behavior), describes the Behavior, and the Consequence of the behavior (what happened immediately after). 
Behavior Intervention Plan

A behavior intervention plan or BIP is a written, individualized support plan based on a functional assessment of the child’s challenging behavior that utilizes behavioral interventions and supports to reduce behaviors that interfere with the learning progress and/or increase adaptive, socially appropriate behaviors that lead to successful learning for the student. A BIP is considered a legal document that incorporates a comprehensive set of procedures and support strategies that are selected based on the individual student’s needs, characteristics, and preferences and supports the goals and objectives of the IEP. Positive behavioral intervention plans include (a) modifications to the environment; (b) teaching skills to replace problem behaviors; (c) effective management of consequences; and (d) promotion of positive life-style changes. It is essential that behavior support plans have a replacement skill included in them to create long-term changes to behavior that generalizes across settings. If the child needs a BIP to improve learning and socialization, the BIP can be included as part of the IEP and aligned with the goals in the IEP. The following steps are a general guide to developing a comprehensive student behavior intervention or support plan. 
  • The behavior support plan should be developed collaboratively and begin with a functional behavior functional behavior assessment (FBA) of the problem behavior to understand the student and the nature of the challenging behavior in the context of the environment.
  • Next, the professional team examines the results of the functional assessment and develops hypothesis statements as to why the student engages in the challenging behavior. The hypothesis statement is an informed, assessment-based explanation of the challenging behavior that indicates the possible function or functions served for the student. This includes a description of the behavior, triggers or antecedents for the behavior, maintaining consequences, and purpose of the problem behavior.
  • Once developed, the hypothesis provides the foundation for the development of intervention strategies. The focus of intervention plan is not only on behavior reduction, but for also teaching appropriate, functional (generally communicative) skills that serve as alternative/replacement behaviors for the undesirable behavior. Changes should be identified that will be made in the classroom or other setting to reduce or eliminate problem behaviors. Prevention strategies may include environmental arrangements, personal support, changes in activities, new ways to prompt the student, and changes in expectations. These strategies should be integrated into the student's overall program and daily routines, rather than being separate from the curriculum.  
  • A positive behavior intervention plan must be implemented as planned (with integrity). Following implementation of the plan, the team regularly reviews and evaluates its effectiveness and makes modifications as needed.  The design and implementation of a behavior support plan should be considered a dynamic process rather than one with a specific beginning and end. Overtime, the plan will need to be adjusted as the student's needs and circumstances change.  
Research indicates that PBS can be effective for reducing and preventing problem behaviors of children with ASD. For example, a review of published research studies found that in cases where PBS strategies were used, there was as much as an 80% reduction in challenging behavior for approximately two-thirds of the cases studied. The Individuals with Disabilities Education Act (IDEA) has endorsed PBS as a preferred form of intervention for managing the problematic behavior of students with disabilities and requires that "positive behavioral interventions, strategies, and supports" be used when addressing the needs of students who demonstrate persistent challenging behavior that impedes their learning or the learning of others. 

Adapted from Wilkinson, L. A. (2017). A best practice guide to assessment and intervention for autism spectrum disorder in schools. London and Philadelphia: Jessica Kingsley Publishers.


Lee A. Wilkinson, PhD, NCSP is a licensed and nationally certified school psychologist, registered psychologist, and 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).

Monday, May 22, 2017

Fears and Phobias on the Autism Spectrum


Fears and Phobias in Children on the Autism Spectrum
Anxiety Disorders are a frequent co-occurring (comorbid) problem for children and youth with autism spectrum disorder (ASD). Although prevalence rates vary from 11% to 84%, most studies indicate that approximately one-half of children with ASD meet criteria for at least one anxiety disorder. Of all types of anxiety disorders, specific phobia is the most common, with prevalence estimates ranging from 31% to 64%. In contrast, estimates of phobias in children in the general population range from 5% to 18%.
Unusual fears have long been recognized as a feature of autism. In fact, 70 years ago, Leo Kanner wrote in his initial account of autism that “loud noises and moving objects” are “reacted to with horror” and things like “tricycles, swings, elevators, vacuum cleaners, running water, gas burners, mechanical toys, egg beaters, even the wind could on occasions bring about a major panic.” We now know that children with autism perceive, experience, and respond to the world very differently than children without autism. Experiences that may be tolerable for most typical children might be frightening, disturbing, or irritating for a child with ASD. Children with autism may also be unresponsive to other experiences (e.g., insensitive to pain), may not show stranger or separation anxiety, and may be seemingly unaware of obvious dangers (e.g., running into traffic).
Research
Previous research examining the types and frequencies of fears in children with autism have found odd and intense fears in approximately 40% of children with autism, whereas unusual fears were present in only 0–5% of children without autism, including children with a learning disability, language disorder, ADHD, intellectual disability, and typical development. Studies also indicate that while some of the most common fears for children with autism and typical development overlap, children with autism have frequent fears that were not amongst the most frequently reported for typical children. These include fear of thunderstorms, large crowds, and closed spaces.
A large scale study reported in Research in Autism Spectrum Disorders investigated unusual fears in a sample of 1033 children ages 1-16 with autism. The purpose of the study was to categorize and determine specific types of unusual fears in children with autism as well as identify variables related to the presence or absence of these fears. Unusual fears were reported in 421 (40.8%) of the 1033 children with autism. A total of 487 unusual fears were reported, representing 92 different fears. The most common unusual fears in three or more children with were toilets, elevators, vacuum cleaners, thunderstorms, heights, and visual media (characters in or segments of movies, television shows, commercials, or computer games). Many children also had common childhood fears and phobias (including fear of dogs, bugs, spiders, snakes, the dark, doctors, barbers, monsters, people in costumes, mechanical toys, sleeping alone, fire, and swimming), which increased the overall proportion of children with autism who had intense fears and phobias to more than 50%.
Categories and Frequency of Unusual Fears
The most frequently reported categories of unusual fears were:
§        Mechanical things (Blenders, can openers, cassette players, ceiling fans, clothes, dryers, drills, electric toothbrushes, exhaust fans, hair dryers, hand dryers, leaf blowers, toilets, vacuum cleaners, washing machines, water fountains, wheelchairs, windshield wipers) 
§        Heights (Elevators, escalators, heights, steps) 
§        Weather (Cloudy weather, natural disasters such as floods, droughts, hurricanes, tornadoes, rain, thunderstorms, wind) 
§        Non-mechanical things (Balloons, black television screen, buttons, clam shells, crayons, dolls, drains, electrical outlets, eyes on toys garden hose, glass tabletops, glow in dark stars, gum under table, hair in bathtub, lights, mole on person’s face, moon, shadows, strings, stuffed animals, swinging or rocking things, tall things, things on ceiling, vent on house)
§        Places (Bathroom, bedroom, certain house or restaurant, closed or small spaces, garage, large or open space, room with doors unlocked or open)
§        Worries - Events (car accident, heart attack, natural disaster, germs or contamination, running out of certain foods, running out of gas, something falling over, toilet overflowing, tree falling on house)
§        Visual media (Characters in or segments of movies, television shows, commercials, computer games)
Types and Frequency of Unusual Fears
Unusual fears reported by parents fell into two categories: (1) uncommon fears not typically reported in children in the general population or in children with specific phobias and (2) fears that have been reported in studies of children without autism but which were considered unusual by parents because of their intensity, obsessiveness, irrationality, or interference with functioning. Of the total number reported, the most common unusual fears in three or more children with autism were:
§         Toilets
§         Elevators
§         Vacuum cleaners
§         Thunderstorms
§         Tornadoes
§         Heights
§         Visual media 
Associated variables
Children with and without unusual fears did not differ in age, IQ level, mental age, autism severity, race or parent occupation. Of all the demographic variables, only female gender was associated with the presence or absence of unusual fears. More girls had unusual fears (48.8%) than did boys (39.1%). This is consistent with the earlier studies indicating that girls with autism had more fears than boys and with general population studies showing that girls had more fears and higher fear survey scores than boys. The finding that children with and without unusual fears did not differ in age suggests that unlike most typical children, those with autism may not outgrow unusual fears. Likewise, the findings regarding autism severity and parent occupation suggest that the presence of unusual and intense fears may be present across SES and the entire autism spectrum. The authors note that the lack of demographic differences in the study may suggest a neurobiological basis for fears overriding developmental and environmental influences.
Implications
Research suggests that it is critical to assess for unusual and intense fears in children with ASD because they are common and can interfere significantly with functioning. Specific fears and phobias have been cited as frequent anxiety triggers/stressors for children with ASD. The impact of anxiety includes personal distress in children, parents, and siblings, increase in challenging behavior and stereotyped behaviors, restriction of activities/opportunities and negative impact on quality of life for child and family. For example, children with autism may avoid necessary life situations (e.g., refusing to go to school because there may be a fire drill) or be in a constant state of anxiety and unable to function optimally because of their fears.
Identification of specific fears and phobias can help educators and interventionists improve programs and services for children on the autism spectrum. This information may be especially useful for clinicians, particularly those utilizing CBT as a treatment approach for children and youth with ASD. There is evidence to suggest that the interventions used to treat intense fears and phobias in children without autism (exposure, desensitization, modeling, shaping, and reinforcement) might also be effective for children who have autism. Lastly, further research is needed to investigate why some specific unusual fears are common to autism but not the general population. As more individuals with ASD communicate about their fears and reasons for their idiosyncrasies, we may come to a better understanding of autism and its symptoms.
Mayes, S. D., Calhoun, S. L., Aggarwal, R., Baker, C., Mathapati, S., Molitoris, S., & Mayes, R. D. (2013). Unusual fears in children with autism. Research in Autism Spectrum Disorders, 7, 151–158.
Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217–250.
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).


Sunday, May 14, 2017

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

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

Studies indicate that the demands placed on parents caring for a child with autism contribute to a higher overall incidence of parental stress, depression, and anxiety and adversely affect family functioning and marital relationships compared with parents of children with other disabilities. Negative outcomes include: (a) increased risk of marital problems; (b) decrease in father’s involvement; (c) greater parenting and psychological distress; (d) higher levels of anxiety and depression; (f) added pressure on the family system; (g) more physical and health related issues; (h) decrease in adaptive coping skills; and (i) greater stress on mothers than fathers.

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

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

Implications

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

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

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

Giallo, R., Wood, C. E., Jellett, R., & Porter, R. (2013). Fatigue, wellbeing and parental self-efficacy in mothers of children with an Autism Spectrum Disorder. Autism, 17, 465-480. DOI: 10.1177/1362361311416830

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

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

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

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

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

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

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

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

Lee A. Wilkinson, PhD, NCSP is a licensed and nationally certified school psychologist, registered psychologist, and certified cognitive-behavioral therapist. He is author of the award-winning books, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools and Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBT. He is also editor of a best-selling text in the APA School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in SchoolsHis latest book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition).



Thursday, May 11, 2017

Cognitive-Behavioral Therapy (CBT) for Children on the Autism Spectrum



  Introduction
Children with autism spectrum disorders (ASD) frequently have co-occurring (comorbid) psychiatric conditions, with estimates as high as 70 to 84 percent. A Comorbid disorder is defined as a disorder that co-exists or co-occurs with another diagnosis so that both share a primary focus of clinical and educational attention. Although anxiety is not a defining characteristic of ASD, prevalence rates are significantly higher in children with ASD than in typically developing children, children with language disorders, chronic medical conditions, disruptive behavior disorders, and intellectual disability or epilepsy. In fact, research suggests that approximately one-half of children with ASD would meet the criteria for at least one anxiety disorder. Several studies have also reported a bidirectional association between internalizing disorders and autistic symptoms. For example, both a higher prevalence of anxiety disorders has been found in ASD and a higher rate of autistic traits has been reported in youths with mood and anxiety disorders. Individuals with ASD also appear to display more social anxiety symptoms compared to typical control individuals, even when these symptoms are clinically overlapping with the characteristic social problems typical of ASD. With comorbidity rates so elevated in the ASD population, treatment options for anxiety have become increasingly important.
Cognitive-Behavioral Therapy
There is a strong evidence base for the use of cognitive-behavioral therapy (CBT) interventions for depression and anxiety in non-ASD populations. There are a variety of CBT approaches, but most share some common elements. The primary goals of traditional CBT are to identify and challenge dysfunctional beliefs, catastrophic cognitions, and automatic thoughts as well as change problematic behavior. With a therapist’s help, the individual is encouraged to challenge his or her beliefs and automatic thoughts through a variety of techniques. Through CBT, the individual learns skills to modify thoughts and beliefs, as well as problem-solving strategies to improve interaction with others in effective and appropriate ways, thereby promoting self-regulation.
CBT models for the treatment of anxiety attempt to create a new coping pattern by using behavioral techniques such as modeling, exposure, and relaxation as well as cognitive techniques addressing cognitive distortions and deficiencies. These treatment models generally emphasize four critical components of therapy: assessment, psychoeducation, cognitive restructuring, and exposure. Using these four components, CBT has been shown to be an empirically supported treatment for typically developing children with anxiety issues. The most commonly used techniques to treat anxiety in children are exposure, relaxation, cognitive restructuring, and modeling in that order.
Cognitive-Behavioral Therapy for ASD
Although CBT has been shown to be an effective empirically supported treatment for typical children, there is a question as to whether or not it can be used with other populations. In recent years, there have been a number of attempts to adapt CBT for children and teens on the autism spectrum. Although there is no agreed upon set of modifications, there appears to be a general consensus that with certain specific modifications, CBT can be used to effectively lessen anxiety symptoms in higher functioning children with ASD. Evidence from the current literature supports a specific blend of techniques and strategies as the most effective approach to modify CBT for use with children who have an ASD. The primary modifications to CBT that have been shown to make them more viable for anxious children with ASD are the development of disorder specific hierarchies, the use of more concrete, visual tactics, the incorporation of child specific interests, and parent participation.
A study published in the Journal of Child Psychology and Psychiatry illustrates how a standard CBT program can be adapted to include multiple treatment components designed to accommodate or remediate the social and adaptive skill deficits of children with ASD that serve as barriers to anxiety reduction. The study tested a modular CBT program incorporating separate modules focusing specifically on deficits associated with ASD such as poor social skills, self-help skills, and stereotypies as well as a modified version of a traditional CBT protocol utilizing primarily cognitive restructuring and exposure techniques. 

The participants were forty children (7–11 years of age) who met the criteria for ASD and one of the following anxiety disorders: separation anxiety disorder (SAD), social phobia, or obsessive-compulsive disorder (OCD). They were randomly assigned to 16 sessions of CBT or a 3-month waitlist (36 children completed treatment or waitlist). The CBT model emphasized coping skills training (e.g., affect recognition, cognitive restructuring, and the principle of exposure) followed by in vivo exposure. The parent training components focused on supporting in vivo exposures, positive reinforcement, and communication skills. Independent evaluators blind to treatment condition conducted structured diagnostic interviews and parents and children completed anxiety symptom checklists at baseline and posttreatment/postwaitlist. The researchers found that 92.9% of children in the active treatment group met criteria for positive treatment response post-treatment compared to only 9.1% of children in the waitlist condition. In addition, 80% of children in the active treatment group were diagnosis free at follow up. From these results, it is reasonable to draw the conclusion that with specific modifications, CBT can be an effective treatment for children with ASD and concurrent anxiety disorders.
Conclusion
The above referenced study, together with case studies and other clinical trials, provides evidence that incorporating disorder specific hierarchies, use of more concrete, visual tactics, incorporation of child specific interests, and parental involvement can facilitate successful results when conducting CBT for anxiety in children with ASD. Although there is support for the efficacy of an enhanced CBT program, there are some limitations to these modifications and adapted models. Specifically, the child’s level of functioning, variation in the use of each modification, and the utilization of different CBT programs across studies affect the generalization of the outcomes. Moreover, there is a need to examine to what extent CBT with these modifications could be used with more severe cases of ASD or in cases where there is more severe intellectual impairment. Children with higher functioning ASD may be able to better process the cognitive components of traditional and modified CBT than those who are lower functioning. Additionally, different CBT programs may emphasize different components of CBT making it difficult to determine which components are the most critical for treating anxiety in children with ASD. The next step for future research should be to focus on developing a standardized approach to treatment which incorporates specific modifications, randomized clinical trials to test the approach, and explorations of the boundaries within the ASD population for use and effectiveness of treatment. Given the elevated comorbidity rates, finding an effective, empirically supported treatment for anxiety in children with ASD is critical.

Key References and Further Reading
Moree, B. N., & Davis III, T. E. (2010). Cognitive-behavioral therapy for anxiety in children diagnosed with autism spectrum disorders: Modification trends. Research in Autism Spectrum Disorders, 4, 346–354.

National Autism Center (2015). Findings and conclusions: National standards project, phase 2. Randolph, MA: Author. http://www.nationalautismcenter.org/national-standards-project/

National Professional Development Center on Autism Spectrum Disorders. (2015). Evidence-Based Practices. http://autismpdc.fpg.unc.edu/evidence-based-practices

Wilkinson, L. A. (2015). Overcoming Anxiety on the Autism Spectrum: A Self-Help Guide Using CBTLondon and Philadelphia: Jessica Kingsley Publishers.

Wilkinson, L. A. (2017).  A best practice guide to assessment and intervention for autism spectrum disorder in schools. Philadelphia & London: Jessica Kingsley Publishers.

Wong, C., Odom, S. L., Hume, K. A., Cox, A. W., Fettig, A., Kucharczyk, S… Schultz, T. R. (2014). Evidence-based practices for children, youth, and young adults with Autism Spectrum Disorder. Chapel Hill: The University of North Carolina, Frank Porter Graham Child Development Institute, Autism Evidence-Based Practice Review Group. cidd.unc.edu/Registry/Research/Docs/31.pdf

Weitlauf AS, McPheeters ML, Peters B, Sathe N, Travis R, Aiello R, Williamson E, Veenstra-VanderWeele J, Krishnaswami S, Jerome R, Warren Z. Therapies for Children With Autism Spectrum Disorder: Behavioral Interventions Update. Comparative  Effectiveness Review No. 137. (Prepared by the Vanderbilt Evidence-based Practice Center under Contract No. 290-2012-00009-I.) AHRQ Publication No. 14-EHC036-EF. Rockville,  MD: Agency for Healthcare Research and Quality; August 2014. http://www.effectivehealthcare.ahrq.gov/reports/final.cfm

Wood, J. J., Drahota, A., Sze, K., Har, K., Chiu, A., & Langer, D. A. (2009). Cognitive behavioral therapy for anxiety in children with autism spectrum disorders: A randomized, controlled trial. Journal of Child Psychology and Psychiatry, 50, 224–234. http://doi.org/10.1111/j.1469-7610.2008.01948.x
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).

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