Best Practice Review: The Pragmatic Language Skills Inventory (PLSI)

Best Practice Review: The Pragmatic Language Skills Inventory (PLSI)

The assessment of communication skills is vital component of a comprehensive assessment for children with autism spectrum disorders (ASD). A best practice communication assessment should provide information about the child’s communicative abilities in both the verbal and nonverbal domains, and should not be limited to the formal, structural aspects of language (e.g., articulation and receptive/ expressive language functioning). Particular attention should be given to the pragmatic, social communicative functions of language (e.g., turn taking, understanding of inferences and figurative expressions) as well as to the nonverbal skills needed to communicate and regulate interaction (e.g., eye contact, gesture, facial expression, and body language).

Assessments to identify pragmatic language deficits are not as well developed as tests of language fundamentals. Few standard measures are available to assess these skills in higher functioning children with ASD. Valid norms for pragmatic development and objective criteria for pragmatic performance are also limited. Available standardized instruments that focus specifically on pragmatic language include the Test of Pragmatic Skills (TPS), the Comprehensive Assessment of Spoken Language (CASL), the Test of Pragmatic Language, 2nd Edition (TOPL-2), the Test of Language Competence (TACL), the Children's Communication Checklist-Second Edition (CCC-2) and the Pragmatic Language Skills Inventory (PLSI). 

Description

The Pragmatic Language Skills Inventory (PLSI) is a norm referenced rating scale designed to assess the pragmatic language skills of children between 5 and 12 years of age. It can also be used to specify therapy goals for these children, conduct follow-up evaluations, and document progress. The PLSI consists of 45 items that comprise three subscales (each with 15 items):

• Personal Interaction Skills (initiating conversation, asking for help, participating in verbal games, and using appropriate nonverbal gestures)
• Social Interaction Skills (when to talk and when to listen, understanding classroom rules, taking turns in conversations, and predicting consequences) 
• Classroom Interaction Skills (using figurative language, maintaining topic, explaining how things work, writing stories, and using slang)

The test takes 5 to 10 minutes to complete by an adult (e.g., parent, teacher, teacher assistant) who assigns each item a score from 1 to 9 based on his or her knowledge of the child and that of children of the same age and gender regarding a particular skill (e.g., writing a good story, taking turns in conversation, asking for help or favors). The authors specify that the rater should know the child well and be familiar with that child's language skills. Scoring and interpretation are made by a qualified examiner (e.g., speech-language pathologist, school psychologist).

Once the rater has assigned scores for all 45 items, the examiner derives percentile ranks and standard scores (mean = 10, SD = 3) for each of the subscales. Standard scores for the three subscales are summed to determine a child's Pragmatic Language Index (PLI) score (mean = 100, SD = 15) and overall percentile rank. The PLI is considered the best estimate of a student’s pragmatic language ability and the score that should be used by examiners to identify students who may have a pragmatic language deficit. Descriptive scores for the subscales and PLI range from “Very Poor” to “Very Superior.” Generally, scores in the Below Average, Poor, and Very Poor ranges suggest a pragmatic language disorder (PLI < 89).

Psychometric Characteristics

The PLSI was standardized on 1,175 students (610 boys, 565 girls) between 5 and 12 years of age. The sample represents the U.S. population of school-age children with respect to geographic region, gender, race, ethnicity, and disability status. Reliability data are reported in the manual and indicate high levels of internal consistency, excellent interrater agreement, and good test-retest reliability.

The test manual also reports information for content, criterion, and construct validity. Construct validity is reportedly high. Criterion-related validity (concurrent validity) was established by correlating scores of the PLSI with performance on the Test of Pragmatic Language (TOPL). There was a strong relationship between the two measures, indicating that the PLSI and TOPL measure very similar constructs (e.g., pragmatic language). The diagnostic validity of the test was assessed by comparing test scores for a group of 40 students with disabilities (autism, learning disability, attention-deficit/hyperactivity disorder, and intellectual disability), a group of 45 gifted and talented students, and the normative sample. As expected, the PLI scores for the students with disabilities were significantly lower than those in the other two groups. Students with autism and intellectual disability received the lowest scores among the various diagnostic groups.

Conclusion

Speech-language evaluations for any child with communication concerns should include a screening of the child's social-communication skills. Norm-referenced parent and teacher report measures such Pragmatic Language Skills Inventory (PLSI) provides a time-efficient option for screening children's social-communication skills. If such screening reveals concerns about a child's skills, a more comprehensive evaluation should be completed.

As with all tests, the PLSI has strengths and weaknesses. A strength is its standardization with a representative sample of the U.S. population. The PSLI also demonstrates high levels of internal consistency, excellent interrater agreement, good test-retest reliability, and correlates highly with Test of Pragmatic Language (TOPL). The record forms are clear and easy to follow for the many individuals who are likely to administer, score, and interpret the test. The PLSI has an especially important advantage of sampling pragmatic skills in the child’s natural environment.

A relative weakness involves the selection of an individual who knows a child well enough to accurately rate his or her pragmatic skills. Although no special training is required to make PSLI ratings, the rater is expected to have some basic knowledge and experience with behavior rating scales. According to the manual, the rater should also “have a good grasp of what is typical or average behavior for the child's age and gender.” Consequently, it may be problematic to assume that a parent, teacher's assistant, or classroom teacher would know when a child was advanced, average, or behind on the type of pragmatic abilities assessed on the PLSI. It should be noted, however, that the examiner can complete the PLSI with teachers in a structured interview format. Although the authors conclude that “The work we have done so far should be sufficient to establish the PSLI as a promising alternative way of identifying students who have a pragmatic language disorder,” further research is needed to examine the instrument’s accuracy (sensitivity) in predicting group membership (normative sample and clinical groups).

In conclusion, the PSLI is a brief, quantitative measure based on naturalistic observations of parents and teachers that can be used as an effective screener in clinical or educational settings, an aid to clinical diagnosis, or a measure of response to intervention.  Of course, the PSLI should not be used in isolation to make decisions regarding classification and intervention planning. Results from other instruments, direct observations, and parent interviews provide valuable information for identifying social communication deficits in children on the autism spectrum (see Wilkinson for a description of assessment domains and recommended measures).

References

Gilliam, J. E., & Miller, L. (2006). Pragmatic Language Skills Inventory. Austin, TX: Pro-Ed.

Review of the Pragmatic Language Skills Inventory. Guyette, T. & Kelly, D. (2007). Buros Institute of Mental Measurements, 461-466.

Twachtman-Cullen, D., & Twachtman-Bassett, J. (2014). Language and social communication. In L. A. Wilkinson (Ed.), Autism spectrum disorder in children and adolescents:  Evidence-based assessment and intervention in schools (pp. 101-124). Washington, DC: American Psychological Association.

Wilkinson, L. A. (2017). Best practice in assessment. In L. A. Wilkinson, A best practice guide to assessment and intervention for autismspectrum disorder in schools (pp. 46 -95). London: Jessica Kingsley Publishers.

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

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, is a licensed and nationally certified school 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. 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 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).

Designing Positive Behavior Support Plans for Students with Autism

Positive Behavior Support Plans for Students with Autism

The challenging behaviors of children on the autism spectrum are among the most difficult and stressful issues faced by many 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 non-occurrence) 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 (BIP)

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.

 👉 Click here to read a free preview of “A Best Practice Guide…”

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

Social Isolation in Young Autistic Adults

The increase in the prevalence of autism spectrum disorder (ASD) among children indicates that a correspondingly large number of youth will be transitioning into adulthood in the coming years. Investigating the social interaction of young adults with ASD is important given that social participation is an indicator of life quality and overall adaptive functioning. A study using data from the National Longitudinal Transition Study 2 examined rates of participation in social activities among young adults who received special education services for ASD, compared to young adults who received special education for intellectual disability, emotional/behavioral disability, or a learning disability.

According to the study, young autistic adults were significantly more likely to never see friends, never get called by friends, never be invited to activities, and be socially isolated. Nearly 40 percent of young adults with ASD never saw friends and half were not receiving any phone calls or being invited to activities. Researchers found that 28 percent had no social contact at all. The social struggles of young people with ASD were also significantly more pronounced than those of other groups. For example, while almost one-third of those with ASD qualified as socially isolated because they never received telephone calls or went out with friends, fewer than 10 percent of individuals with intellectual disability and only 2 to 3 percent of people with emotional disturbance or learning disabilities fell into this category.

“Difficulty navigating the terrain of friendships and social interaction is a hallmark feature of autism,” said Paul Shattuck of Washington University who coauthored the study. “Nonetheless, many people with autism do indeed have a social appetite. They yearn for connection with others. We need better ways of supporting positive social connection and of preventing social isolation.”

This study indicates that there are growing numbers of adolescents and young adults with ASD in need of substantial support. In fact, the lack of services available to help young autistic adults transition to greater independence has been noted by researchers for a number of years and has become an increasingly important issue as the prevalence of ASD continues to grow and as children identified with autism reach adolescence and adulthood. The focus of intervention/treatment must shift from remediating the core deficits in childhood to promoting adaptive behaviors that can facilitate and enhance ultimate functional independence and quality of life in adulthood. This includes new developmental challenges such as independent living, vocational engagement, postsecondary education, and family support.

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. DOI 10.1007/s10803-013-1833-8

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

Parents of Autistic Children Experience High Levels of Stress and Fatigue

Parents of Autistic Children with 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 neurodevelopmental conditions. 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 autism. Challenges in obtaining a timely 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 autistic children 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 autism report 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 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 autistic children 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. (2017). A best practice guide to assessment and intervention for autism spectrum disorder in schools (2^nd edition). London and Philadelphia: Jessica Kingsley Publishers. 

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

Early Identification of Repetitive Behavior in Autism

Early Identification of Repetitive Behavior

The DSM-5 criteria for autism spectrum disorder (ASD) include restricted and repetitive patterns of behavior (RRB) as a core diagnostic feature, together with the domain of social communication and social interaction deficits. Recent evidence suggests that restricted and repetitive behaviors may differentiate children who develop autism spectrum disorder (ASD) by late infancy. A study published in the Journal of Child Psychiatry and Psychology found that children who show several repetitive behaviors at their first birthday have nearly four times the risk of autism of children who don’t show repetitive behaviors.

Researchers collected parent-report data (Repetitive Behavior Scales-Revised) for 190 high-risk toddlers and 60 low-risk controls from 12 to 24 months of age. Forty-one high-risk children were classified with ASD at age 2. Profiles of repetitive behavior were compared between groups. The study found that the profiles for children diagnosed with ASD differed significantly from high- and low-risk children without the disorder on all measures of repetitive behavior. Toddlers with ASD showed significantly higher rates of repetitive behavior across at the 12-month time point. Repetitive behaviors were significantly associated with adaptive behavior and socialization scores among children with ASD at 24 months of age, but were largely unrelated to measures of general cognitive ability.

These findings suggest that as early as 12 months of age, a broad range of repetitive behaviors are highly elevated in children who go on to develop ASD. While some degree of repetitive behavior is essential to typical early development, the extent of these behaviors among children who develop ASD appears highly atypical. The study supports earlier findings that repetitive behaviors may be among the earliest-emerging signs of autism. It also points to new avenues of inquiry. While the search for early social deficits has received substantial attention from researchers, ritualistic, repetitive behaviors have largely been neglected. This is unfortunate because repetitive behaviors are often easier for a parent to notice than the absence of a social behavior. Parents of individuals with ASD also report that restricted and repetitive behaviors are one of the most challenging features of ASD due to their significant interference with daily life. Likewise, they can impede learning and socialization by decreasing the likelihood of positive interactions with peers and adults. 

Implications

Given the importance of restricted and repetitive (RRB) behavior, clinicians and practitioners should give increased attention to the assessment and presence of this behavior in screening and assessment as an early indicator and consider their impact on the psychological well-being of individuals with ASD. Restricted and Repetitive behavior (RRB) should be included as a core domain in a comprehensive developmental assessment. Although broad-based measures such as the Autism Spectrum Rating Scales (ASRS; Goldstein & Naglieri, 2010) and the Social Responsiveness Scale (SRS-2; Constantino & Gruber, 2012) incorporate scales and treatment clusters assessing stereotypical behaviors, sensory sensitivity, and highly restricted interests, there are parent/caregiver questionnaires that focus solely on restricted and repetitive behaviors and provide a more complete understanding of the impact of RRB on adaptive functioning. 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. Individuals who have marked deficits in social communication, but whose symptoms do not meet the RRB criteria for ASD, may be evaluated for social (pragmatic) communication disorder (SCD).

Adapted from A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition).

👉 Click here to read a free preview of “A Best Practice Guide…”

Wolff JJ, Botteron KN, Dager SR, Elison JT, Estes AM, Gu H, Hazlett HC, Pandey J, Paterson SJ, Schultz RT, Zwaigenbaum L, Piven J. Longitudinal patterns of repetitive behavior in toddlers with autism. J Child Psychol Psychiatry. 2014 Feb 19. doi: 10.1111/jcpp.12207. [Epub ahead of print]

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

Teaching Social Skills to Learners with Autism

Teaching Social Skills

Impairment in social communication and interaction is a core feature of autism spectrum disorder (ASD). Social skills deficits include difficulties with initiating interactions, maintaining reciprocity, taking another person’s perspective, and inferring the interests of others. Because social skills are critical to successful social, emotional, and cognitive development and long-term outcomes, best practice indicates that social skills instruction should be an integral component of educational programming for all children with ASD. Research evidence suggests that when appropriately planned and systematically delivered, social skills instruction has the potential to produce positive effects in the social interactions of children with ASD.  

Both the National Professional Development Center on Autism (NPDC) and the National Autism Center (NAC) have identified social skills training/instruction as an evidence-based intervention and practice. Social skills training is typically offered as small-group instruction with a shared goal or outcome of learned social skills in which participants can learn, practice, and receive feedback. These interventions seek to build social interaction skills in children and adolescents with ASD by targeting basic responses (e.g., eye contact, name response) to complex social skills (e.g., how to initiate or maintain a conversation). 

Most often, schools are expected to assume the responsibility of delivering social skills training programs to children with social skills deficits, because these impairments significantly interfere with social relationships and have an adverse effect on academic performance. Although equipped to teach social skills, implementing social skills programming can be challenging for school personnel (teachers, counselors, psychologists, social workers), who often have limited time and resources. Recent meta-analysis research suggests that the effectiveness of social skills training can be enhanced by increasing the quantity (or intensity) of social skills interventions, providing instruction in the child’s natural setting, matching the intervention strategy with the type of skill deficit, and ensuring treatment integrity (fidelity). In order for students to learn, practice, and maintain expected social behavior, educators must teach social skills within the context of the various school settings that students encounter each day (i.e., classroom, special subject areas such as art and music, cafeteria, and playground). 

The following are recommended when developing a social skills intervention strategy:

• Avoid a "one size fits all" approach and adapt the intervention to meet the needs of the individual or particular group. 
• Employ primarily positive strategies and focus on facilitating the desirable social behavior as well as eliminating the undesirable behavior. 
• Emphasize the learning, performance, generalization, and maintenance of appropriate social behaviors through modeling, coaching, and role-playing. 
• Provide social skills training and practice opportunities in a number of settings with different individuals in order to encourage students to generalize new skills to multiple, real life situations. 
• Use assessment strategies, including functional assessments of behavior, to identify children in need of more intensive interventions as well as target skills for instruction. 
• Enhance social skills by increasing the frequency of an appropriate behavior in "normal" or typical environments to address the naturally occurring causes and consequences. 
• Include parents and caregivers as significant participants in developing and selecting interventions (they can help reinforce the skills taught at school to further promote generalization across settings).

The type of skill deficit (performance deficit versus skill deficit) should also be considered when developing a social skills intervention plan. A performance deficit refers to a skill or behavior that is present but not demonstrated or performed, whereas a skill acquisition deficit refers to the absence of a particular skill or behavior. School professionals should make an intensive effort to systematically match the intervention strategy to the type of skill deficit exhibited by the child. For instance, if the child lacks the skills necessary to join in an interaction with peers, an intervention strategy should be selected that promotes skill acquisition. In contrast, if the child has the skills to join in an activity but regularly fails to do so; a strategy should be selected that enhances the performance of the existing skill.

Social relationship skills are critical to successful social, emotional, and cognitive development and to long-term outcomes for students. Thus, systematic social skills instruction should be considered a critical component of treatment for children with autism. Teaching social skills can have both preventive and remedial effects that can help reduce the risk for negative outcomes not only for children on the autism spectrum, but for all children.  

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.

👉 Click here to read a free preview of “A Best Practice Guide…”

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