Sunday, May 14, 2017

Mothers of Children on the Autism Spectrum Experience High Levels of Fatigue and Mental Distress

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 affects family functioning and marital relationships compared with parents of children with other intellectual, developmental, or physical disabilities. Mothers of children with ASD, in particular, appear to face unique challenges that potentially have an impact on their health and wellbeing.

Parents of children with an autism spectrum disorder (ASD) are increasingly involved in the provision of early intervention and learning activities to promote positive outcomes for their children. However, several studies have documented that parental stress as well as a lack of time and energy are barriers to providing early intervention activities. Because autism impairs social relatedness and adaptive functioning, parent stress can decrease helpful psychological processes and directly influence the parent or caregiver’s ability to support the child with disabilities. Consequently, understanding factors, such as lack of energy or fatigue that may limit the capacity of the parent to assist in promoting their child’s development is critical.

A study published in the journal Autism examined the extent to which parents experience fatigue and its relationship to other aspects of wellbeing and parenting. Fifty mothers of children ages 2-5 years with ASD participated in the study and completed questionnaires assessing level of fatigue, parenting self-efficacy (belief about the ability to parent successfully), children’s behavioral and emotional problems, sleep quality, parent support needs, and overall physical activity. The study found that compared with mothers of typically developing children, mothers of children with ASD reported significantly higher fatigue, with overall scores in the moderate range. Factors associated with high levels of fatigue were poor maternal sleep quality, a high need for social support and poor quality of physical activity. Fatigue was also significantly related to other aspects of wellbeing, including stress, anxiety and depression, and lower parenting efficacy and satisfaction.

These findings were somewhat expected given the additional caregiving demands, parenting challenges and pressures of managing family life when raising a child with an ASD. Likewise, It is also probable that symptoms of depression, anxiety, stress and worry (body tension, increased heart rate and rumination) can be mentally taxing and contribute to, or exacerbate fatigue. The researchers also note that it was not surprising that poor sleep quality was associated with higher levels of fatigue given the large amount of research indicating that inadequate sleep and poor sleep quality is associated with a range of physical health and wellbeing difficulties. 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. Parents reported that their child waking was the primary reason for sleep disruption. For other parents in the study, stress, anxiety and not being able to wind down were stated reasons for sleep disruption.


What are the implications of this study? The findings clearly indicate the need for interventions to specifically target parental fatigue and its impact on families affected by ASD both in the present and longer term. In addition to interventions targeting child sleep problems, parents are likely to benefit from psycho-education about fatigue and its potential effects on wellbeing, 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. It is well established that social support is protective of optimal parent wellbeing and, therefore, is an important component of any intervention to address fatigue and wellbeing of parents of children with an ASD. Parents with limited assistance to share the daily demands of caregiving and family life are likely to be at greater risk of fatigue than parents with more support. For parents with limited support, there might also be fewer opportunities to engage in self-care behaviors that are likely to alleviate or protect them from fatigue.

From a clinical perspective, professionals working with families of children with an ASD should be aware of negative effects of fatigue in addition to other wellbeing difficulties, such as stress and anxiety. 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 important. Lastly, future work in this area 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 wellbeing. The longer-term benefits for parents in terms of strengthening their overall health, wellbeing and parenting should also be a focus of research.

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

Lee A. Wilkinson, PhD, CCBT, NCSP is author of the award-winning book, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools, published by Jessica Kingsley Publishers. He is also editor of a best-selling text in the APA School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools and author of the book, Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBT. His latest book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition).

Wednesday, May 3, 2017

Teaching Social Skills to Learners on the Autism Spectrum

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.  Unfortunately, many children with ASD do not receive consistent and intensive social skills programming in school. This is problematic, especially considering social impairments may result in negative outcomes, such as poor academic achievement, social failure, isolation, and peer rejection, which often leads to co-occurring (comorbid) anxiety and depression. 
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.  

Monday, April 24, 2017

Schools Need Improved Definitions & Evlauation Procedures for Autism

The dramatic increase in the number of students qualifying for special education under autism in our schools may be due, in part, to vague definitions together with ambiguous, variable, and irrelevant evaluation procedures, according to a study published in the journal, Autism Research and Treatment. The study examined the definition of autism published by each state education agency (SEA) and the District of Columbia, as well as SEA evaluation procedures for determining student eligibility for autism. The researchers compared components of each SEA definition from two authoritative sources: DSM-IV-TR and IDEA-2004.
The results indicated that many more SEA definitions incorporate IDEA-2004 features than DSM-IV-TR features. However, despite similar foundations, SEA definitions of autism displayed considerable variability. Many of the definitions were too vague to be of much use. Evaluation procedures were found to vary even more across SEAs. There often was little concordance between the definition (what autism is) and evaluation procedures (how autism is identified). Definition components often were not addressed by evaluation features, even in a cursory way. One of the least recommended evaluation features was the requirement to administer an autism-specific evaluation as part of the eligibility process. Of the SEAs that included an autism assessment in the evaluation process, none specified the use of a recognized instrument such as the Autism Diagnostic Observation Schedule (ADOS) or the Childhood Autism Rating Scales (CARS). Although several of these SEAs did indicate the required use of a state-created autism checklist, none gave any reference to a source or psychometric characteristics of those checklists
Recommendations for state and federal policy changes are discussed. For example, the researchers suggest that the publication of DSM-5 provides SEAs with the opportunity to expand and update their current definition of autism. They note that the DSM-5 criteria for autism spectrum disorder (ASD) encompass all of the elements stated by the current IDEA definition. The DSM-5 also recognizes the salience of sensory processing problems and co-occurring (comorbid) disorders (e.g., ADHD). The study recommends that SEAs consider the DSM-5 criteria for ASD as they consider revisions to their state definition of autism and corresponding procedures by which assessors will provide data for eligibility determination. Likewise, IDEA-2004 is overdue for Congressional reconsideration and possible amendment, so there is an opportunity to also update and clarify the federal educational definition of autism. Improved, more specific definitions and evaluation procedures will enable SEAs and school districts to better serve students with autism and more efficiently allocate resources.
Malinda L. Pennington, Douglas Cullinan, and Louise B. Southern, “Defining Autism: Variability in State Education Agency Definitions of and Evaluations for Autism Spectrum Disorders,” Autism Research and Treatment, vol. 2014, Article ID 327271, 8 pages, 2014.

Lee A. Wilkinson, PhD, NCSP is author of the award-winning book, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools, published by Jessica Kingsley Publishers. He is also editor of a best-selling text in the APA School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools and author of Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBT. His most recent book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition).

Monday, April 3, 2017

Parental Stress and Autism Respite Care

 “Just one additional hour of respite care per week was related to an increase in marital quality” 

Parents of children with developmental disabilities face challenges that place them at high risk for distress and negative psychological outcomes. 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 affects family functioning and marital relationships compared with parents of children with other intellectual, developmental, or physical disabilities. Research suggests that respite care can be an appropriate and effective intervention to potentially decrease stress and should be used as an appropriate coping strategy for parents of children with disabilities.
For example, Harper et al. obtained survey data regarding daily responsibilities, marital quality, and the amount of respite care received from 101 mother and fathers who were together raising at least one child with an autism spectrum disorder (ASD). Parents indicated that approximately 64 percent of their children spent time with a respite care providers, including grandparents, babysitters, community agencies, and extended family members. The researchers found that the number of hours of respite care was positively related to improved marital quality for both husbands and wives and that a 1 hour increase in weekly respite care was associated with an improvement in marital quality. This relationship was significantly mediated by perceived daily stresses and uplifts (qualities that led to better relationships) in both husbands and wives. More respite care was associated with increased uplifts and reduced stress; increased uplifts were associated with improved marital quality; and more stress was associated with reduced marital quality. The number of children in the family was associated with greater stress, and reduced relational quality and daily uplifts.
The study’s findings offer hope to couples parenting a child with ASD and have important implications for professionals who work with families caring for a special needs child. Respite care should be a critical component in a comprehensive family support plan because even a small increase in the number of hours of respite care has the potential to significantly improve marital quality. Counselors, therapists, psychologists, physicians, school administrators, special education teachers, social workers, and family advocates need to be aware of the respite care options available and be unified in their approach to informing and helping parents access these services.  As the researchers conclude, “A coordinated approach to helping parents obtain and navigate ongoing respite care is long overdue.” 
Harper, A., Dyches, T. T., Harper, J., Roper, S. O., & South, M. (2013). Respite care, marital quality, and stress in parents of children with autism spectrum disorders. Journal of Autism and Developmental Disorders. doi: 10.1007/s10803-013-1812-0
Lee A. Wilkinson, PhD, CCBT, NCSP is author of the award-winning book, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools, published by Jessica Kingsley Publishers. Dr. Wilkinson 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 and author of the book, Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBT.  His latest book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition).

Monday, March 6, 2017

Triggers for Anxiety 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. Moreover, rates of anxiety are reportedly higher than those in children with language disorders, conduct disorder, or in clinically anxious typically developing children. 

Despite promising advances in the research and practice literature, our understanding of the prevalence, phenomenology and treatment of anxiety in ASD remains somewhat limited. Importantly, there is a paucity of information on the difference between ASD and non-ASD populations in regards to the manifestation of anxiety symptoms. Understanding more about the factors triggering and maintaining anxiety in ASD, and how children with ASD and their families experience, think and speak about anxiety, could inform the development and implementation of autism-specific interventions for anxiety in this population.
An exploratory study published in the journal Autism reported on a series of 5 focus groups with parents of children and adolescents with ASD and anxiety as a first step in identifying the triggers, behavioral signs and cognitive processes associated with anxiety. Seventeen mothers of 19 children with a diagnosis of ASD participated in the focus groups. All children (12 boys and 7 girls) had received ASD diagnoses from local clinical services and were reported to experience significant levels of anxiety that had an impact on their functioning.
The following is a summary of key themes identified by parents in relation to triggers, symptoms and impact of anxiety in their children with ASD.
Anxiety triggers/Stressors:
1. Change or disruption to routine.
2. Confusion and worries about social and communication situations.
3. Specific fears and phobias.
4. Sensory oversensitivity and overstimulation.
5. Being prevented from preferred repetitive behaviors and interests.
6. Too many demands or expectations.
Presentation of anxiety:
1. Increase in challenging behavior.
2. Avoidance/withdrawal/escape.
3. Increase in levels of arousal.
4. Increase in sensory, repetitive, and ritualistic behavior.
5. Physical sensations associated with anxiety.
6. Cognitive distortions and errors in thinking.
Impact of anxiety:
1. Personal distress in children, parents, and siblings.
2. Increase in challenging behavior and stereotyped behaviors.
3. Restriction of activities/opportunities.
4. Negative impact on quality of life for child and family.
Across groups, parents gave markedly similar descriptions of the triggers and behavioral signs associated with anxiety. Parents’ perspectives on the anxieties of their children indicate that there are many overlaps with anxiety as experienced in the general population. Shared triggers included social worries, specific phobic stimuli, and expectations that are, or are perceived to be, too demanding. Common features of the presentation of anxiety include an increase in arousal and avoidance/escape behaviors.
There were, however, a number of autism-specific triggers and symptoms of anxiety identified in children with ASD. Key features were the intensity, pervasiveness and persistence of the anxiety. Changes and disruptions to routines, sensory sensitivities and social difficulties associated with difficulties in perspective-taking and social expectations appeared to be ASD-specific triggers. Situations that were reported to trigger anxiety often reflected autism-related difficulties in processing style or sensory sensitivity. The majority of comments about the presentation of anxiety fell into the categories of challenging behavior and avoidance/withdrawal, indicating that behavioral manifestations are the major expressions of anxiety in children with ASD. When asked about their anxious thoughts, the most prominent theme that emerged was the difficulty that children with ASD have in expressing their anxiety verbally, particularly at times of severe distress. Although this is also occurs with many typically developing children, it may be a particular difficulty for children with ASD given the challenges they face in understanding and expressing emotions and pragmatic language difficulties. In addition to similar descriptions of the triggers and behavioral signs associated with anxiety, the impact of anxiety was reported to be often times more substantial than the impact of ASD itself.
Although this study did not specifically address assessment and intervention/treatment issues, several implications in these areas emerged. For example, when parents and children with ASD are asked to describe their experiences in a semi-structured, non-directed manner, they largely focus on features more specific to the ASD population that are not typically measured on most standard anxiety measures. Although there are broad-based measures that evaluate emotional/behavioral difficulties in children with neurodevelopmental disabilities, a significant gap remains in the resources available to clinicians and researchers for measuring ASD-specific aspects of anxiety. This argues for the inclusion of observational methods in the assessment of anxiety: using multiple informants, multimodal assessment techniques, and methods.
Identification of specific triggers/stressors and presentation of anxiety in children with ASD can help educators and interventionists improve programs and services for this group of students. These findings may also be useful for clinicians working with children and youth with ASD, particularly those utilizing CBT as a treatment approach. Although recent randomized controlled trials suggest that enhanced and adapted CBT can successfully treat anxiety disorders in high functioning children with ASD, it is unclear which adaptations are critical or which modifications are required for which anxiety disorder.  Nevertheless, the authors note that their findings support the view that adaptations to CBT, such as adding ASD-specific components to the treatment protocol, are important, relevant and acceptable to parents of children with ASD.  They also caution that even though CBT can be an effective means of treating anxiety in youth with ASD, clinicians may need to consider whether CBT is the most appropriate intervention or whether other approaches such as behavioral strategies or environmental modifications may be more suitable, as accessing or modifying cognitions may prove too challenging for some youth with ASD. Yet, CBT is clearly an effective intervention for many children with ASD, and the involvement of parents can further improve outcomes.
Recommendations for future research include focusing on larger groups and control samples, and systematically investigating the link between ASD cognitive processing styles and anxiety. The authors propose that further exploration of the similarities and differences between shared and ASD-specific triggers, manifestations, and effects of anxiety using a variety of methodologies will contribute to the development of more appropriate assessment measures and ASD-specific models of anxiety which can then guide treatment for more effectively.
Ozsivadjian, A., Knott, F., & Magiati, I. (2012). Parent and child perspectives on the nature of anxiety in children and young people with autism spectrum disorders: a focus group study. Autism, 16, 107-121. DOI: 10.1177/1362361311431703

Saturday, February 4, 2017

Evidence-Based Practices for Children and Youth on the Autism Spectrum

Supporting children and youth with autism spectrum disorder (ASD) requires individualized and effective intervention strategies. It is very important for teachers, administrators, and other school personnel to be knowledgeable about evidence-based approaches to adequately address the needs of students with autism and to help minimize the gap between research and practice. Although the resources for determining best practices in autism are more extensive and accessible than in previous years, school professionals face the challenge of being able to accurately identify these evidence-based strategies and then duplicate them in the classroom and other educational settings
The rapid growth of the scientific literature on ASD has also made it difficult for practitioners to stay up-to-date with research findings. Unfortunately, many proponents of ASD treatments make claims of cure or recovery, but provide little scientific evidence of effectiveness. These interventions appear in books and on websites that describe them as “cutting-edge therapies” for autism. Consequently, school-based personnel and families need to have a reliable source for identifying practices that have been shown, through scientific research, to be effective with children and youth with ASD. Evidence-based research provides a starting point for determining what interventions are most likely to be effective in achieving the desired outcomes for an individual.
Developing and implementing effective interventions and treatment for students with autism requires that they be evidence-based and supported by science. All interventions and treatments should be based on sound theoretical constructs, robust methodologies, and empirical studies of effectiveness. An evidence-based practice can be defined as a strategy, intervention, treatment, or teaching program that has met rigorous peer review and other standards and has a history of producing consistent positive results when experimentally tested and published in peer-reviewed professional journals. It excludes evidence that is supported by anecdotal reports, case studies, and publication in non-refereed journals, magazines, internet, and other media outlets.
Systematic Research Reviews
Systematic research reviews play an important role in summarizing and synthesizing the knowledge base for determining what interventions are most likely to be effective in achieving the desired outcomes for children and youth with ASD. There are two major resources available to school professionals that provide a listing, along with systematic reviews, of evidence-based interventions and practices for students with ASD: the National Autism Center’s (NAC; 2015) second phase of the National Standards Project (NSP-2), which reviewed research studies to identify established interventions for individuals with ASD, and the National Professional Development Center on Autism Spectrum Disorders (NPDC on ASD, 2015; Wong et al., 2014), which also analyzed numerous research studies and identified evidence-based practices for students with autism. Although both reviews were conducted independently, their findings are very similar and reflect a convergence across these two data sources. According to the NAC and NPDC, the following are evidence-based interventions/practices for ASD:
Behavioral Interventions: These interventions are based on behavioral principles and are designed to reduce problem behavior and teach functional alternative behaviors.
Cognitive Behavioral Intervention: Cognitive behavioral interventions are designed to change negative or unrealistic thought patterns and behaviors with the goal of positively influencing emotions and life functioning.
Modeling: This intervention relies on an adult or peer providing a demonstration (live and video) of a target behavior to the person learning a new skill, so that person can then imitate the model.
Naturalistic Interventions: These interventions primarily involve child-directed interactions to teach real-life skills (communication, interpersonal, and play skills) in natural environments. Examples include incidental teaching, milieu teaching, and embedded teaching.
Parent-Implemented Intervention: Parents provide individualized intervention to their child to improve/increase a wide variety of skills such as communication, play, or self-help, and/or to reduce challenging behavior. Parent training can take many forms, including individual training, group training, support groups, and training manuals.
Pivotal Response Training (PRT): PRT is a naturalistic intervention model that targets pivotal areas of a child's development, such as motivation, responsivity to multiple cues, self-management, and social initiations.
Peer-Mediated Instruction: Teachers/service providers systematically teach typically developing peers to interact with and/or help children and youth with ASD to acquire new behavior, communication, and social skills. Common names include peer networks, circle of friends, and peer-initiation training.
Scripting: This intervention involves developing a verbal and/or written script about a specific skill or situation which serves as a model for the child with ASD.
Self-Management: Self-management strategies involve teaching individuals with ASD to evaluate and record the occurrence/nonoccurrence of a target behavior and secure reinforcement. The objective is to be aware of and regulate their own behavior so they will require little or no assistance from adults.
Social Narratives: These interventions identify a target behavior and involve a written description of the situation under which specific behaviors are expected to occur. The most well-known story-based intervention is Social Stories™.
Social Skills Training: Social skills training involves group or individual instruction designed to teach learners with ASD ways to appropriately interact with peers, adults, and other individuals.
Visual Support: Any visual display that supports the learner engaging in a desired behavior or skills independent of prompts. Examples of visual supports include pictures, written words, schedules, maps, labels, organization systems, scripts, and timelines.
Systematic reviews synthesize the results of multiple studies and provide school professionals with summaries of the best available research evidence to help guide decision-making and support intervention practice. It must be stated, however, that these ratings are not intended as an endorsement or a recommendation as to whether or not a specific intervention is suitable for a particular child with ASD. Because no two individuals are alike, no one program exists that will meet the needs of every person with autism. Additionally, children with autism learn differently than typical peers or children with other types of developmental disabilities. The success of the intervention depends on the interaction between the age of the child, his or her developmental level and individual characteristics, strength of the intervention, and competency of the professional. Each child is different and what works for one may not work for another. Research findings are only one component of evidence-based practice to consider when selecting interventions. The selection of a specific intervention should be based on goals developed from a comprehensive developmental assessment as well as professional judgment and the values and preferences of parents, caregivers, and the individual with ASD.
National Autism Center (2015). Findings and conclusions: National standards project, phase 2. Randolph, MA: Author.
National Professional Development Center on Autism Spectrum Disorders. (2015). Evidence-Based Practices.
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.
Adapted from Wilkinson, L. A. (2017). A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd edition). London: Jessica Kingsley Publishers. 

Wednesday, February 1, 2017

Autism and Special Education: What Parents and School Professionals Should Know

More children than ever before are being diagnosed with autism spectrum disorders (ASD). The number of children identified with autism has more than doubled over the last decade. This dramatic increase in the prevalence of children with ASD over the past decade, together with the clear benefits of early intervention, have created a need for schools to identify children who may have an autism spectrum condition. Understanding the differences between a medical or clinical diagnosis and an educational determination of eligibility for special education services can help parents and school professionals become better advocates.
The Individuals with Disabilities Education Improvement Act of 2004 (IDEA) and the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) are the two major systems used to diagnose and classify children with ASD. The DSM-5 is considered the primary authority in the fields of psychiatric and psychological (clinical) diagnoses, while IDEA is the authority with regard to eligibility decisions for special education. The DSM was developed by clinicians as a diagnostic and classification system for both childhood and adult psychiatric disorders. The IDEA is not a diagnostic system per se, but rather federal legislation designed to ensure the appropriate education of children with special educational needs in our public schools. Unlike the DSM-5, IDEA specifies categories of ‘‘disabilities’’ to determine eligibility for special educational services. The definitions of these categories (there are 13), including autism, are the most widely used classification system in our schools. According to IDEA regulations, the definition of autism is as follows:
(c)(1)(i) Autism means a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age 3, that adversely affects a child’s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences. The term does not apply if a child’s educational performance is adversely affected primarily because the child has an emotional disturbance, as defined in this section.
(ii) A child who manifests the characteristics of ‘‘autism’’ after age 3 could be diagnosed as having ‘‘autism’’ if the criteria in paragraph (c)(1)(i) of this section are satisfied.
This educational definition is considered sufficiently broad and operationally acceptable to accommodate both the clinical and educational descriptions of autism and related disorders. While the DSM-5 diagnostic criteria are professionally helpful, they are neither legally required nor sufficient for determining educational placement. A medical diagnosis from a doctor or mental health professional alone is not enough to qualify a child for special education services. It is state and federal education codes and regulations (not DSM-5) that drive classification and eligibility decisions. In fact, the National Research Council (2001) recommends that all children identified with ASD, regardless of severity, be made eligible for special educational services under the IDEA category of autism. Thus, school professionals must ensure that children meet the criteria for autism as outlined by IDEA or state education agency (SEA) and may use the DSM-5 to the extent that the diagnostic criteria include the same core behaviors. All professionals, whether clinical or school, should have the appropriate training and background related to the diagnosis and treatment of neurodevelopmental disorders. The identification of autism should be made by a professional team using multiple sources of information, including, but not limited to an interdisciplinary assessment of social behavior, language and communication, adaptive behavior, motor skills, sensory issues, and cognitive functioning to help with intervention planning and determining eligibility for special educational services.

Legal and special education experts recommend the following guidelines to help school districts meet the requirements for providing legally and educationally appropriate programs and services to students who meet special education eligibility for autism.
1. School districts should ensure that the IEP process follows the procedural requirements of IDEA. This includes actively involving parents in the IEP process and adhering to the time frame requirements for assessment and developing and implementing the student’s IEP. Moreover, parents must be notified of their due process rights. It’s important to recognize that parent-professional communication and collaboration are key components for making educational and program decisions.
2. School districts should make certain that comprehensive, individualized evaluations are completed by school professionals who have knowledge, experience, and expertise in ASD. If qualified personnel are not available, school districts should provide the appropriate training or retain the services of a consultant.
3. School districts should develop IEPs based on the child’s unique pattern of strengths and weaknesses. Goals for a child with ASD commonly include the areas of communication, social behavior, adaptive skills, challenging behavior, and academic and functional skills. The IEP must address appropriate instructional and curricular modifications, together with related services such as counseling, occupational therapy, speech/language therapy, physical therapy and transportation needs. Evidence-based instructional strategies should also be adopted to ensure that the IEP is implemented appropriately.
4. School districts should assure that progress monitoring of students with ASD is completed at specified intervals by an interdisciplinary team of professionals who have a knowledge base and experience in autism. This includes collecting evidence-based data to document progress towards achieving IEP goals and to assess program effectiveness.
5. School districts should make every effort to place students in integrated settings to maximize interaction with non-disabled peers. Inclusion with typically developing students is important for a child with ASD as peers provide the best models for language and social skills. However, inclusive education alone is insufficient, evidence-based intervention and training is also necessary to address specific skill deficits. Although the least restrictive environment (LRE) provision of IDEA requires that efforts be made to educate students with special needs in less restrictive settings, IDEA also recognizes that some students may require a more comprehensive program to provide FAPE.
6. School districts should provide on-going training and education in ASD for both parents and professionals. Professionals who are trained in specific methodology and techniques will be most effective in providing the appropriate services and in modifying curriculum based upon the unique needs of the individual child.
References and further reading
Individuals with Disabilities Education Improvement Act of 2004. Pub. L. No. 108-446, 108th Congress, 2nd Session. (2004).
National Research Council (2001). Educating children with autism. Committee on Educational Interventions for Children with Autism. C. Lord & J. P. McGee (Eds). Division of Behavioral and Social Sciences and Education. WashingtonDCNational Academy Press.
Twachtman-Cullen, D., & Twachtman-Bassett, J. (2011). The IEP from A to Z: How to create meaningful and measurable goals and objectives. San FranciscoCA: Jossey-Bass.
Wilkinson, L. A. (2016). Best practice in special education. In L. A. Wilkinson, A best practice guide to assessment and intervention for autism spectrum disorder in schools (pp. 157-200). London: Jessica Kingsley Publishers.
Yell, M. L., Katsiyannis, A, Drasgow, E, & Herbst, M. (2003). Developing legally correct and educationally appropriate programs for students with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 18, 182-191.
Zirkel, P. A. (2014). Legal issues under IDEA. In L. A. Wilkinson (Ed.). Autism spectrum disorder in children and adolescents: Evidence-based assessment and intervention in schools (pp 243-257).WashingtonDC: American Psychological Association.
Lee A. Wilkinson, PhD, NCSP, is a licensed and nationally certified school psychologist, chartered psychologist, registered psychologist, and certified cognitive-behavioral therapist. He is also a university educator and trainer, and has published widely on the topic of autism spectrum disorders both in the US and internationally. 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, both published by Jessica Kingsley Publishers. He is also editor of a best-selling text in the American Psychological Association (APA) School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and InterventionHis latest book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition).

© Lee A. Wilkinson, PhD

Friday, January 20, 2017

Restricted, Repetitive Patterns of Behavior (RRBs) and Comorbid Symptoms in Children on the Autism Spectrum

Children with autism spectrum disorder (ASD) frequently have co-occurring (comorbid) psychiatric symptoms, with rates significantly higher than would be expected from the general population. Research indicates that the most common co-occurring diagnoses are anxiety and depression, attention problems, and disruptive behavior disorders. Previous studies also suggest that restricted, repetitive patterns of behavior, interests, or activities (RRBs) are associated with the symptoms of co-occurring psychiatric conditions in individuals with ASD. 

The criteria for the new DSM-5 category of Autism Spectrum Disorder (ASD) continue to include RRBs as a core diagnostic feature, together with the domain of social communication and social interaction deficits. According to the DSM-5, restricted, repetitive patterns of behavior, interests, or activities are defined by the presence of at least two of the following:
  • Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).
  • Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).
  • Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
  • Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects.
RRBs have been shown to cause significant challenges for both the individual with ASD and his or her family. Likewise, they can impede learning and socialization by decreasing the likelihood of positive interactions with peers and adults. Parents of individuals with ASD also report that RRBs are one of the most challenging features of ASD due to their significant interference with daily life. In contrast with the core domain of social/communication deficits, RRBs have only recently been the focus of systematic research efforts.
Stratis and Lecavalier (2013) investigated the relationship between RRBs and co-occurring depressive, anxiety, attention-deficit hyperactivity disorder (ADHD) and oppositional defiant disorder (ODD) symptoms, while considering level of functioning. Participants in the study were 72 parents of children and youth diagnosed with ASD (ages 5–17). Children’s co-occurring diagnoses included: Attention-Deficit/Hyperactivity Disorder (ADHD), Anxiety Disorders, Mood Disorders, Behavioral Disorders, and Intellectual Disability. Frequency and severity of RRBs were assessed across five domains: Stereotypic Behavior, Self-Injurious Behavior (SIB), Compulsive Behavior, Ritualistic/Sameness Behavior, and Restricted Interests. Ratings by parents were used to quantify co-occurring symptom severity for each of the following four domains: ADHD, ODD, anxiety disorders and depressive disorders. Data analyses were completed to determine which RRBs were most predictive of co-occurring symptom severity.
Children with high levels of ritualistic and sameness behavior tended to show more severe symptoms of anxiety and depression. This appears consistent with the high co-occurrence of depressive and anxiety symptoms in the general population. This finding also suggests that ritualistic and sameness behaviors may be implicated in the development and maintenance of anxiety in individuals with ASD. Interestingly, high levels of restricted interests were associated with less severe symptoms of depression, suggesting that restricted interests may be a protective factor against the development of depression. Although restricted interests frequently have a negative impact on interpersonal relationships, they might also have a positive effect by providing a feeling of self-validation and a means of occupying one’s time, while also serving as an incentive to increase knowledge. 
Inconsistent with previous research, all psychiatric symptom domains appeared unrelated to children’s level of functioning. However, level of functioning moderated the relationship of SIB and depressive and anxiety symptoms. For higher functioning children and youth, elevated levels of SIB were predictive of more severe depressive and anxiety symptoms whereas higher levels of SIB were predictive of less severe depressive and anxiety symptoms for lower functioning individuals. For lower functioning individuals, high levels of ritualistic and sameness behaviors predicted more severe depressive symptoms while there was no significant relationship for higher functioning individuals.
The results of this study may help clarify the presentation of ASD phenotypes, suggesting that different types of RRBs may be predictive of co-occurring psychiatric disorders. This has implications for genetic and neurobiological research. For example, differences underlying genetic and neurobiological factors may be identified based on symptom presentation, including RRBs and co-occurring psychiatric symptoms. Moreover, if RRBs and psychiatric symptoms do share common etiologies, interventions for psychiatric symptoms may help ameliorate RRBs in individuals with ASD. The possibility that RRBs such ritualistic and sameness behaviors may be involved in development and maintenance of anxiety or that restricted interests protect against the development of depressive symptoms has significant implications for treatment and should be explored in future research. Given that RRBs continue to be a core feature of ASD in DSM-5, clinicians and practitioners should give increased attention to the assessment and presence of RRBs and their impact on common co-occurring disorders and psychological well-being of individuals with ASD.
Stratis, E. A., & Lecavalier, L. (2013).  Restricted and repetitive behaviors and psychiatric symptoms in youth with autism spectrum disorders. Research in Autism Spectrum Disorders, 7, 757–766.

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