Anxiety in Children and Adolescents with Autism Spectrum Disorder: Evidence-Based Assessment and Treatment

States

Chapter 1

Introduction

Connor M. Kerns¹, Patricia Renno², Eric A. Storch³, Philip C. Kendall⁴ and Jeffrey J. Wood²,    ¹Drexel University, Philadelphia, PA, United States,    ²University of California, Los Angeles, CA, United States,    ³University of South Florida, Tampa, FL, United States,    ⁴Temple University, Philadelphia, PA, United States

Abstract

This book covers broad ground and targets the scientist, the clinician, and those who combine these disciplines in their daily work. It provides reviews of literature, covering topics such as the prevalence, etiology, presentation, and assessment of anxiety in ASD with chapters submitted from leaders in the field. This compilation combines scientific richness and evidence with clinical how to’s and practical illustrations and suggestions. The chapters cover newly developing areas and areas of important future research and clinical practice. There should be something in this book for all those who support individuals with ASD in their lives and careers and who wonder about the essential nature of social development and cognition and its connectedness with mental health, quality of life, and well-being. Further, we see this book as a medium to deliver the scientific literature to those outside academia who nonetheless want to know as much as they can know, know what has been tested, and offer treatments and approaches that can be expected to have an impact on the lives of individuals with ASD.

Keywords

Anxiety; functional impairment; autism; etiology; autism spectrum disorder; Diagnostic and Statistical Manual

Anxiety has been discussed within the context of autism spectrum disorder (ASD) since Kanner and Asperger’s initial accounts of autism, in the descriptions of ASD in the Diagnostic and Statistical Manual (DSM), and in the burgeoning research on the prevalence, presentation, and treatment of ASD that has emerged over the last decade. Kanner (1943) noted high levels of anxiety in several of his case studies. For example, he described one child as being very timid, fearful of various and changing things, wind, large animals, etc. (p. 228). Another child displayed …a good deal of ‘worrying.’ He frets when the bread is put in the oven to be made into toast, and is afraid it will get burned and be hurt… (p. 233). Criteria for ASD in the DSM over the last several editions have included symptoms that often overlap with anxiety (e.g., adherence to rituals, difficulties with minor changes in routine). Recent research provides evidence that anxiety disorders affect approximately 40–50% of children with ASD (van Steensel et al., 2011) and cause substantial distress and impairment over and above that caused by ASD alone (Bellini, 2004; Chang et al., 2012; Sukhodolsky et al., 2008).

Although anxiety has been consistently noted in ASD, efforts to understand and explain the role and significance of this cooccurrence are more recent. Cooccurrence of psychological disorders is common and yet there is something particular about the relationship of anxiety in ASD. Anxiety is more prevalent in ASD than other developmental and learning disorders. Further, anxiety is both independent and distinguishable from core ASD deficits and also influenced by and influential to them (Kerns and Kendall, 2012). The relationship of ASD and anxiety may thus teach us much about the underlying etiology and maintenance of these psychological conditions and the increased functional impairments related to their cooccurence. The study of anxiety in ASD may demonstrate neurobiological and behavioral patterns associated with comorbidity generally but also elucidate patterns specific to the cooccurrence of these particular symptoms. Further, recent research has indicated that anxiety is a valid treatment target among children with ASD based on emerging genetic, psychophysiological, and psychometric evidence. As a result of the increased awareness of the prevalence and impact of anxiety on individuals with ASD, several interventions have been developed and tested and found to be efficacious in treating anxiety in ASD.

This book begins with chapters focusing on the nature of ASD and anxiety cooccurrence. Authors delve into the current literature on the prevalence, presentation, and underlying mechanisms of anxiety in ASD. These chapters highlight classical presentations of anxiety in youth with ASD, as well as, more ambiguous presentations, the correct diagnostic classification of which is unclear. Additional chapters discuss recent research findings on neurobiological mechanisms underlying anxiety in ASD.

Chapters are then devoted to discussion of assessment and treatment of anxiety in ASD, with several chapters on evidence-based practices. Basic cognitive behavioral therapy principles are introduced as well as how this treatment approach can be applied to children and youth with ASD. Authors review the existing literature on the efficacy of individual and group CBT therapies for anxiety in ASD. Further, authors describe individual and group CBT approaches that have been employed in successful treatment programs and provide case studies to exemplify how these types of interventions can be implemented by clinicians to treat anxiety in youth with ASD. Chapters detailing psychosocial treatment have a pragmatic flavor to them allowing the reader to apply skills and techniques immediately. Particular attention is also given to treatment considerations for symptoms related to anxiety in ASD that can complicate case conceptualization, treatment planning, and implementation.

Further chapters include preliminary findings and future research directions related to the treatment of anxiety in individuals with ASD. These sections are devoted to the assessment and treatment of anxiety in adults and minimally verbal children. There is also a chapter on school-related issues that are relevant for youth with anxiety and ASD. Topics include how anxiety can manifest and interfere in the school setting and discussion of accommodations and supports that can be employed in the school for anxious children on the spectrum. Lastly, there is a chapter on the use of evidence-based psychosocial treatments for anxiety in youth with ASD in the community. It discusses current efforts to disseminate psychosocial approaches and future directions for implementing psychosocial treatments to treat anxiety and related conditions in children and youth with ASD in the community.

This edited book covers broad ground and targets the scientist, the clinician, and those who combine these disciplines in their daily work. It provides reviews of literature, covering topics such as the prevalence, etiology, presentation, and assessment of anxiety in ASD with chapters submitted from leaders in the field. This compilation combines scientific richness and evidence with clinical how to’s and practical illustrations and suggestions. The chapters cover newly developing areas and areas of important future research and clinical practice. There should be something in this book for all those who support individuals with ASD in their lives and careers and who wonder about the essential nature of social development and cognition and its connectedness with mental health, quality of life and well-being. Further, we see this book as a medium to deliver the scientific literature to those outside of academia who nonetheless want to know as much as they can know, know what has been tested, and offer treatments and approaches that can be expected to have an impact on the lives of individuals with ASD.

This edited book provides the current state of knowledge of the presentation, assessment, and treatment of anxiety in ASD, but there are future research directions that the authors note in their chapters. Of considerable importance is the need for further research in the assessment and treatment of anxiety in under-represented subpopulations on the autism spectrum, including individuals who are minimally verbal, individuals with intellectual disability and adults. The majority of the current assessment and treatment research has been conducted in school-age children with average intellectual abilities. Additionally, with research demonstrating the efficacy of individual and group treatment approaches for anxiety in ASD, further research on how these treatments can be successfully disseminated and implemented in the community is needed.

Anxiety disorders in children and adolescents with ASD have been rigorously studied over the last decade and continue to receive considerable attention. Explicit studies of anxiety in ASD have increased our knowledge of the prevalence, presentation, assessment and treatment of these constructs and their connectedness. Further, this research suggests that regardless of how it is conceptualized or what it is called, anxiety plays a role in the long-term development, functioning and well-being of individuals with ASD and their families. Moreover, it may provide a gateway to global improvements for individuals and their families.

References

1. Bellini S. Social skill deficits and anxiety in high-functioning adolescents with autism spectrum disorders. Focus Autism Other Dev Disabil. 2004;19:78–86 http://dx.doi.org/10.1177/10883576040190020201.

2. Chang Y, Quan J, Wood JJ. Effects of anxiety disorder severity on social functioning in children with autism spectrum disorders. J Dev Phys Disabil. 2012;24:235–245 http://dx.doi.org/10.1007/s10882-012-9268-2.

3. Kanner L. Autistic disturbances of affective contact. Pathology 1943;217–250.

4. Kerns CM, Kendall PC. The presentation and classification of anxiety in autism spectrum disorder. Clin Psychol. 2012;19(4):323–347 http://dx.doi.org/10.1111/cpsp.12009.

5. Sukhodolsky DG, Scahill L, Gadow KD, et al. Parent-rated anxiety symptoms in children with pervasive developmental disorders: frequency and association with core autism symptoms and cognitive functioning. J Abnorm Child Psychol. 2008;36:117 117. doi:10.1007/s10802-007-9165-9.

6. van Steensel FJ, Bögels SM, Perrin S. Anxiety disorders in children and adolescents with autistic spectrum disorders: a meta-analysis. Clin Child Fam Psychol Rev. 2011;14:302–317 http://dx.doi.org/10.1007/s10567-011-0097-0.

Chapter 2

Prevalence of Anxiety in Autism Spectrum Disorders

Rachel Kent and Emily Simonoff,    Institute of Psychiatry, Psychology & Neuroscience, London, United Kingdom

Abstract

This chapter reviews the current knowledge about the prevalence of and risk factors associated with anxiety disorders in individuals with autism spectrum disorder (ASD). Prevalence rates for a diagnosis of an anxiety disorder are considered only from studies that use clinical diagnostic interviews. We report that anxiety disorders are common in individuals with ASD and overall prevalence rates for anxiety disorders as an aggregate group range between 42% and 79%. The prevalence rates for individual anxiety disorders are variable. Specific phobia, obsessive compulsive disorder, and social anxiety disorder are the most common but the rate and type of anxiety disorders may vary across age and ability level. Challenges in measuring anxiety in ASD and factors that may contribute to variation in overall rates and those for specific disorders are discussed. The objective of summarizing the research literature on anxiety in ASD to date is to set out clear guidelines for the future direction of research and also interpret the findings to highlight the key clinical implications.

Keywords

Autism spectrum disorder; social anxiety; obsessive compulsive disorder; DSM-5; specific phobia

Autism Spectrum Disorder

Autism spectrum disorder (ASD) is a developmental disorder characterized by qualitative impairments in social interaction and social communication such as difficulties in engaging in normal reciprocal conversation and difficulties understanding relationships in addition to a pattern of restricted interests and repetitive or stereotyped behavior such as an insistence on sameness. Recent estimates of the prevalence of ASD from the Centers for Disease Control and Prevention indicate that ASD occurs in as many as one in 68 people and is about 4.5 times more common among boys than girls (Christensen et al., 2016).

The most recent revision of the classification of psychiatric disorders, the Diagnostic and Statistical Manual, Fifth Edition (DSM-5; American Psychological Association, 2013) collapsed under the single term autism spectrum disorder a number of diagnostic entities that had been differentiated in the previous classifications (the Diagnostic and Statistical Manual, Fourth Edition (DSM-IV) and the International Classification of Disease, 10th Edition (ICD-10)). These included: autistic disorder, Asperger’s disorder (also known as Asperger syndrome), pervasive developmental disorder not otherwise specified (PDD-NOS), and atypical autism. Research involving any of these categorical disorders will be covered in this chapter and referred to as ASD unless results specifically address differences between previous diagnostic subgroups.

Individuals with ASD vary widely in their presentation of autistic symptoms, cognitive and language abilities, and the additional co-occurring disorders they experience. Other neurodevelopmental disorders including intellectual disability (e.g., Dykens and Lense, 2011), dyspraxia (e.g., Dziuk et al., 2007), and language impairment (e.g., Loucas et al., 2008) are increased in ASD, as is epilepsy. People with ASD also have elevated rates of a range of psychiatric disorders compared to the general population (de Bruin et al., 2007; Mukaddes and Fateh, 2010; Simonoff et al., 2008). One of these frequently co-occurring psychiatric disorders with ASD is anxiety.

Anxiety

Anxiety disorders embrace a constellation of conditions marked by subjective experiences of worry or fear. Such symptoms are part of normal experience and should only be considered indicative of an anxiety disorder when they are sufficiently frequent or severe to cause sustained and high levels of distress and/or impairment in everyday functioning. Classification systems subsume under anxiety a number of different disorders and, in general, the same criteria are used to classify anxiety disorders among people with ASD as in the general population. In this chapter, we will largely refer to disorders as described under DSM-IV, as much of the relevant research uses this system. This review summarizes the prevalence of anxiety disorders in aggregate and provides an overview of the prevalence rates for individual disorders.

The main changes between DSM-IV and DSM-5 are that obsessive compulsive disorder (OCD) and posttraumatic stress disorder (PTSD) are now included in domains other than anxiety. In addition, for agoraphobia, specific phobia, and social anxiety disorder (used interchangeably with social phobia) it is no longer necessary for the individual to recognize their anxiety as being excessive or unreasonable. Agoraphobia can also now be diagnosed as a distinct disorder without panic disorder. Finally, the diagnostic criteria for separation anxiety disorder no longer require an onset before 18 years of age.

Prevalence of Anxiety Disorders in the General Population

Children and adolescents. A review of general population prevalence studies found rates in children and adolescents to vary widely depending on methodological differences, including the assessment period; prevalence rates for any anxiety disorder ranged from 2.2–8.6% in studies measuring the prevalence over three month periods, to 5.5–7.7% over a six-month period, 8.6–20.9% over a 12-month period, and 8.3–27% for lifetime prevalence (Costello et al., 2005). A systematic review (1980–2004) also found lifetime prevalence (16.6%) of any anxiety disorder to be higher than the 12-month prevalence (10.6%); in this review social anxiety disorder (4.5%), specific phobia (3%), and generalized anxiety disorder (GAD; 2.6%) were the most common anxiety disorders and OCD (0.54%), panic disorder (0.99%), and agoraphobia (1.6%) were less common (Somers et al., 2006).

Adults. In a U.S. population-representative study of adults the 12-month prevalence rate of DSM-IV anxiety disorders was 18.1% and the lifetime prevalence was 28.8% (Kessler et al., 2005; Kessler et al., 2005). In contrast, a population study in Europe found a 12-month prevalence of 6.4% and lifetime prevalence of 13.6% (Alonso et al., 2004). For the 12-month prevalence, across both samples of adults, specific phobia (8.7%; 3.5%) was the most prevalent, followed by social anxiety disorder (6.8%; 1.2%). GAD (3.1%; 1.0%) and panic disorder (2.7%) were also common whereas separation anxiety (0.9%), OCD (1.0%), and agoraphobia (0.8%; 0.4%) were the least frequent (Alonso et al., 2004; Kessler et al., 2005). A general finding, for both youth and adult populations, is the higher rate of anxiety disorders in females with a ratio of around 1.5:1 (Alonso et al., 2004; Costello et al., 2005).

Prevalence in individuals with intellectual disability (ID). In considering the rates of anxiety disorders in people with ASD, it is helpful to contrast these with rates reported for those with ID. About half the ASD population also have ID (Charman et al., 2011). ID may both constitute a risk factor for anxiety disorders and also a barrier to its detection as people with ID may have more difficulty communicating the subjective experiences and cognitions that underpin diagnosis.

Children and adolescents. In a UK national sample, Emerson and Hatton (2007) defined ID by parent- and teacher-reported significant learning problems and found a point prevalence of any impairing anxiety disorder was 11.4% compared to 3.2% in those without ID. Consistent with this, Dekker and Koot (2003) assessed Dutch children attending schools for individuals with ID and reported that for 12-month prevalence rates 21.9% of the children met the criteria for an anxiety disorder with 10.5% having a significant level of impairment. Across studies, specific phobia (2.0%; 6.8%), separation anxiety (2.7%; 1.9%), GAD (1.6%), and social anxiety disorder (1.9%) were the most common (Dekker and Koot, 2003; Emerson and Hatton, 2007).

Adults. In a population sample of adults with ID, the point prevalence of any DSM-IV anxiety disorder was 2.4% (Reid et al., 2011); GAD was the most common (1.3%), and other disorders had very low rates (agoraphobia, 0.2%; panic disorder, 0.2%; social anxiety disorder, 0.1%). In a randomly selected sample of adults with moderate to profound ID the DSM-IV prevalence of any anxiety disorder was similar at 3.3%; 2.5% met criteria for specific phobia, and 0.8% for agoraphobia without panic (Bailey, 2007).

Anxiety in ASD

The co-occurrence of anxiety symptoms in ASD has been noted since the first descriptions of the condition by Leo Kanner (1943) and Hans Asperger (see Frith, 1991), both of whom observed that the children they described were fearful of both common and unusual or novel situations and objects as well as presenting with high levels of generalized worry, fear of social encounters, and obsessionality. Despite these early observations, there still remain a number of challenges, both conceptual and methodological, to the accurate diagnosis of anxiety disorders in people with ASD.

Conceptual considerations. First, there is a lack of consensus on what constitutes gold standard measures of anxiety in ASD and whether these measures should take account possible differences in the manifestation of symptoms in the ASD population. While there is general agreement that assessments need to distinguish the superficial similarities of core ASD symptoms where they overlap, e.g., social avoidance versus social anxiety, repetitive, stereotyped language versus reassurance-seeking, there is presently no agreement whether anxiety symptom definitions and/or criteria should be modified in ASD. Second, many people with ASD experience difficulties with emotional literacy and may find it difficult to express emotions. In assessing internal experiences, this leads to using informants, rather than self-reports, who are often inferring internal states based on contextual cues and other suppositions. Third, among those with more significant levels of ID, it is uncertain how to conceptualize the cognitive components of anxiety, including worry and anticipatory fear. Currently, as there are no reliable and valid biomarkers for anxiety, these issues remain unresolved.

Methodological considerations. A number of methodological considerations may influence the findings, and the most important ones are considered below.

Implementing diagnostic criteria and clinical thresholds. Diagnostic classification systems are designed primarily to assist clinicians in determining which condition(s) apply to patients presenting with psychiatric disorder. While these systems indicate which symptoms are subsumed under different disorders, they give much less guidance with respect to the operationalization into research criteria and how these should be applied in epidemiological studies. Diagnostic assessments ordinarily require the use of a psychiatric interview but these vary in mode administration (structured/semi-structured), the definitions of individual symptoms, and the application of diagnostic algorithms. Diagnostic assessments vary in whether they include a measure of functional impairment, and whether this is applied implicitly or later, more explicitly, in the diagnostic process. These methodological problems are pervasive in psychiatry research and not limited to studies in people with ASD but are likely an important contributor to variability across studies.

Sample ascertainment. The most accurate prevalence estimates will be obtained from studies that use epidemiological methods to derive samples that either include the entire population of interest (target population) or are randomly selected from this population. These methods of complete ascertainment require that the target population can be accurately identified and, for selected groups, this can be a time-consuming aspect of research. Many studies in ASD use other methods to identify the population of interest, leading to incomplete ascertainment. These may involve health registers, clinic or special school populations, and volunteer samples. All have the potential to deliver biased findings and it is often difficult to judge the degree of inaccuracy. As a general principle, ascertainment from more selected samples, particularly where the selection is associated with the area of interest, is more likely to be