Running Head: THE EXPERIENCE OF ANXIETY The Experience of Anxiety in Young Adults with Autism Spectrum Disorder

Anxiety is known to be common amongst young adults with Autism Spectrum Disorder (ASD), yet little is known about the nature of their experiences or the strategies they use to live and cope with their reported anxiety. This qualitative study aimed to begin to address this issue through two focus groups involving 11 young adults with ASD and 10 parents and professionals. Participants in each group were asked to discuss the triggers for anxiety, the consequences of anxiety, and strategies they have used or would like to use to manage their anxiety. The participants identified multiple personal and environmental sources of anxiety, noting the substantial impact it has on their everyday lives at home, work, university, and in the community. Their individual experiences and strategies for living and coping with anxiety are presented. The Experience of Anxiety 3 The Experience of Anxiety in Young Adults with Autism Spectrum Disorder Anxiety is common amongst people with Autism Spectrum Disorder (ASD; Bellini, 2004; Drahota, 2009; Kim, Szatmari, Bryson, Streiner, & Wilson, 2000). These individuals experience a variety of symptoms of anxiety including physiological arousal and panic (Bellini, 2004, 2006), which can greatly interfere with their daily lives (Bellini, 2006). Individuals with ASD are also reported to have poor stress management skills (White, Oswald, Ollendick, & Scahill, 2009). Understanding the phenomenology of anxiety in this population from their own perspective has immense clinical value, and is useful in devising suitable intervention strategies to minimize the adverse experience of symptoms (Gillott & Standen, 2007). Autism Spectrum Disorder is an umbrella term used to describe a group of lifelong pervasive developmental disorders which includes Autistic Disorder, Asperger’s Disorder, and Pervasive Developmental Disorder Not Otherwise Specified. Each are characterised by impairments in social interaction, communication, and restricted and repetitive behaviours and interests (American Psychological Association, 2000). As many people with ASD have an associated intellectual disability (ID), those individuals without a co-morbid ID are referred to as having ‘high-functioning’ autism (HFA), as they function within the average or above average range of intellectual ability. Although anxiety is commonly experienced by individuals with ASD, it appears to be more prevalent among individuals with HFA, especially during transition between childhood and adolescence (White et al., 2010). This paper will report on the outcomes from two focus groups conducted to gain a deeper understanding of the everyday experiences of anxiety in young adults with ASD. The aim was to examine first-person accounts to allow those affected to speak for themselves, using their own words, to explain the impact of anxiety on their lives at home, university, and in the community. To date, research into anxiety in ASD has focused on comparing the The Experience of Anxiety 4 prevalence of anxiety in individuals with ASD compared to typically developing controls, through the use of standardized measures and questionnaires. It is important to note that in this study, participants were asked to speak about anxiety in terms of what they understood the term to mean, with the view to generating information to inform future research and the development of practical strategies. Thus, our aim was not to examine the extent to which symptoms described by participants may fit within the clinical range, but rather to explore the impact of self-reported anxiety on everyday life. The Nature of Anxiety When examining the nature of anxiety, it is pertinent to explore the factors which lead or contribute to feelings of anxiety (i.e., the triggers sources of or situations which elicit anxiety), the emotional or behavioural responses that result from these feeling (i.e., the consequences what happens when anxiety has been triggered), and the potential approaches that alleviate the feelings of anxiety (i.e., the solutions what anxiety-reducing strategies work for individuals with ASD). An examination of the triggers and consequences of anxiety is of great practical value as proposed solutions can then aim to alleviate anxiety experienced by individuals with ASD in everyday life (Gillott, Furniss, & Walter, 2001). Triggers. It is well documented that a range of child factors (e.g., temperament, behavioural inhibition), family factors (e.g., parent-child attachment, marital conflict), and environmental factors (e.g., death in family, change in marital status) can lead to the development of anxiety in the general population (Grover, Ginsburg, & Ialongo, 2005). However, there is evidence that the inherent difficulties in social awareness and social understanding experienced by individuals with ASD may act as an additional trigger for anxiety (White et al., 2010). Bellini (2006), for example, examined the relationship between social skills, physiological arousal, and social anxiety in a group of 41 young people, aged 12-18 years, with Autistic Disorder (n = 19), Asperger’s Disorder (n = 16) and PDD-NOS (n The Experience of Anxiety 5 = 6). Based on self-report measures, including the Social Skills Rating System (SSRS; Gresham & Elliot, 1990), the Social Anxiety Scale for Adolescents (SAS-A; La Greca, 1999), and the Multidimensional Anxiety Scale for Children (MASC; March, 1999), Bellini reported that both heightened physiological arousal and social skills deficits may contribute to social anxiety in ASD. Evans, Canvera, Kleinpeter, Maccubbin, and Taga (2005) administered a parent-report fear survey comprising 69 items rated along a 5-point-Likert type scale for 23 children with ASD (mean age = 9.20 years). Compared to comparison groups of typically developing children and children with Down Syndrome who were matched on mental age, the children with ASD exhibited more social anxiety and had fears of specific environments and situations, such as confined spaces and medical situations. Gillott et al. (2001) also identified environmental triggers for anxiety in young people with ASD in their study of anxiety and social worry in 15 children with HFA (aged 8-12 years) and two ageand gender-matched comparisons groups (15 typically developing children and 15 children with a specific language impairment). Based on the results of the Spence Children’s Anxiety Scale (SCAS; Spence, 1997) and the Spence Social Worries Questionnaire (SWQ; Spence, 1995), the authors identified that children with HFA were more anxious than children in the two comparison groups, experiencing social worries that included difficulties predicting others’ behaviour and readily determining what will happen next. These worries were exacerbated by unanticipated changes in the environment or in the sequence of events (Gillott et al., 2001). This finding is consistent with previous reports that even minor changes in the environment may elicit stress, confusion, and anxiety in individuals with ASD. Indeed the fear of possible change can be overwhelming due to the need to preserve sameness (Gillott et al., 2001). Consequences. Gillott and colleagues (2001) highlighted not only triggers for anxiety in young people with ASD, but also many consequences. The 15 participants with The Experience of Anxiety 6 HFA (aged 8-12 years) reportedly ruminated over their worries and actively avoided social interaction with others. The authors also noted that anxiety-provoking situations may result in both adaptive and maladaptive behaviours which are used by individuals as self-calming strategies. Bellini (2004) also identified a range of consequences associated with anxiety for 41 adolescents aged 12-18 years (mean age = 14.22 years) with ASD. These included physiological manifestations such as arousal, sensory sensitivities, panic attacks, agitation, and low frustration tolerance. These findings are consistent with the notion that anxiety may impede the ability to tolerate everyday stresses, results in decreased coping (Gillott & Standen, 2007) and impedes the capacity of people with ASD to be resourceful and find solutions (Reaven & Hepburn, 2006). Solutions. The social interaction, communication, and cognitive impairments characteristic of ASD hinder the ability of individuals with ASD to generate effective intervention strategies during anxiety-provoking situations (Reaven & Hepburn, 2006). Therefore, it is pertinent that individuals with ASD are provided with strategies that are designed to promote adaptive behaviours involving techniques for self-calming, selfmanagement, and self-awareness, thus, preventing or decreasing the severity of maladaptive behavioural manifestations of anxious symptomology (Myles, 2003). However, in order to provide effective solutions, it is necessary to first obtain a deeper understanding of the experience of anxiety in affected individuals and the consequences of these feelings. Accurate identification of possible anxiety-provoking situations, signs, and symptoms, as well as potential predisposing and preventive factors, will be pertinent to the development and implementation of effective coping strategies for this population (Bellini, 2006; Reaven et al., 2009). Currently, there is a lack of empirically-based intervention strategies designed specifically for individuals with ASD who experience anxiety (White et al., 2010). To The Experience of Anxiety 7 illustrate, although Cognitive Behavioural Therapy (CBT) has been identified as a possible treatment for children with ASD, the results of such attempts have been mixed (Moree & Davis, 2010), and the implications for adults with ASD are unknown. One limitation of this approach is the ability of individuals with ASD to institute the necessary cognitive strategies (e.g., identifying and challenging unhelpful thinking) while experiencing anxiety. Thus, researchers need to explore other possibilities, in particular, ways of preventing the o