Recent figures suggest that approximately 1% of the population in the United Kingdom has an autism spectrum condition (Baird et al., 2006; Brugha et al., 2011). The co-occurrence of anxiety issues has been well established in individuals with autism (Chalfant et al., 2007; Gillot et al., 2001; de Bruin et al., 2007; Klin, Pauls, Schultz and Volkmar, 2005). Psychosocial interventions such as medication and Cognitive Behavioural Therapy (CBT) have often been considered as valuable evidence-based treatment options for anxiety disorders and other mental health issues. As CBT has a strong evidence base, and is efficacious in the remission and prevention of anxiety issues in young children and adults (Barrett and Turner, 2004), several researchers (Chalfant, Rapee and Carroll, 2007; Sofronoff, Attwood and Hinton, 2005; Sze and Wood, 2007; Reaven et al., 2009, 2012) have attempted to examine its efficacy by adapting it to meet the needs of individuals on the autism spectrum.
This article sheds light on the evidence for some modifications of CBT that have been implemented in dealing with anxiety issues in children and youth with high-functioning autism (HFA). Moreover, clinical implications of these research findings and potential barriers in clinical practice have also been addressed.
Anxiety disorders in ASD: Description and Prevalence
Autism Spectrum Disorders are a group of neurodevelopmental syndromes presenting with impairments in social interaction, social communication, and limited flexibility (American Psychiatric Association, 2004). With the introduction of DSM-5 in May 2013, Asperger’s syndrome and Pervasive Developmental Disorder, not otherwise specified (PDD-NOS) were subsumed under the term ASD (Woods, Mahdavi and Ryan, 2013). Clinical aspects are divided into persistent deficits in social communication and restricted, repetitive behaviours, interests and activities (Tanguay, 2011). High-functioning autism (HFA) is a term applied to people with autism who are considered to be cognitively “higher functioning” (IQ>70) than other people with autism (Sanders, 2009).
Anxiety is a mood state of mixed negative emotion and neural arousal that occurs when anticipating a future threat (Wood, 2009). Separation anxiety, social phobia and generalized anxiety are some of the common anxiety issues observed in individuals with autism (Wood, 2009). Anxiety disorder is unrealistic, disabling anxiety associated with personal distress causing substantial impairment in social and/or academic functioning (Reaven et al., 2009).
Prevalence rates of anxiety issues in children with high-functioning autism (HFA) suggest that anxiety is a core difficulty (Chalfant et al., 2007) and anxiety disorders affect 30-80% of children with autism (deBruin et al., 2007; Klin, Pauls, Schultz and Volkmar, 2005). On examination of 15 children with HFA (from self-reports), Gillot et al. (2001) found 47% presented with clinically significant levels of anxiety. Moreover, anxiety difficulties occur more frequently in children with ASD than in other paediatric populations such as children with a language disorder (Gillot et al., 2001). In a survey conducted by National Autistic Society, anxiety is the second most highly cited problem reported by parents (Mills and Wing, 2005). Individuals with Asperger’s syndrome are “clearly prone to considerable stress, anxiety, frustration and emotional exhaustion” (Attwood, 2007, p. 129).
Results of a meta-analysis by van Steensel and Bogels (2011) revealed an estimated 40% of children and adolescents with ASD as having clinically elevated levels of anxiety or at least one anxiety disorder. Rates of specific anxiety disorders in this client population was more than two times higher than in typically developing children (Costello et al., 2005). Considering these prevalence rates, addressing anxiety issues in autism becomes absolutely necessary. Researchers have proposed medication, parent and/or teacher training, and cognitive-behavioral therapy (CBT) as treatment options for this client population (Namerow et al., 2003; Sofronoff & Attwood, 2003).
Cognitive behavioural approaches have been used for anxiety and depression in individuals with HFA based on strong supportive evidence in the general population (Department of Health, 2008). Significant improvements in social interaction skills, emotional understanding and social problem solving were demonstrated in a group-based CBT intervention for children (aged 8-17 years) with autism (Bauminger, 2002). In a study by Chalfant et al. (2004), anxious children were able to identify thoughts that reflected their emotional state (a requirement for suitability for CBT). Considering more recent evidence regarding the Theory of Mind and Central Coherence Theory in children with ASD, CBT has become a potential intervention option for anxious children with HFA (Chalfant et al., 2007). From one of the early RCT studies examining the effectiveness of CBT for anxiety issues in children with ASD (age range: 8-13 years), Chalfant et al. (2007) demonstrated that 71.4% of treated participants (significant difference in comparison with the control group) did not fulfill the diagnostic criteria for an anxiety disorder for various post treatment measures that included clinical interviews and child/parent/teacher reports. In their study, Lyneham, Abbott, Wignall, & Rapee (2003) adapted the “Cool Kids” programme (materials were made more visual and concrete, relaxation sessions were included, families were involved and cognitive activities were simplified) to suit the needs of children with HFA. Although there are some limitations (sample size was small, data may not be a true representation of the population of HFA with anxiety disorders; and the assessors were not blind to the intervention), this study provides some corroborative evidence for CBT as a treatment option for anxious children with HFA. Sze and Wood (2009) observed positive treatment responses in a case study of a 10-year-old boy with Asperger’s syndrome. They demonstrated that a CBT programme (Building Confidence CBT manual by Wood and McLeod, 2008) when modified and enhanced might become an effective treatment approach for anxious children with ASD. Assessment measures following treatment (diagnostic interview, Clinical Global Improvement Scale, questionnaire data etc.) suggested a significant clinical improvement. Moreover, qualitative data showed an improvement in the child’s overall functioning, indicating that the treatment was largely successful. Including ASD-focused enhancements (use of visual aides and special interests to focus on friendship skills, self-awareness, suppressing stereotypes and self-help skills) enabled in overcoming ASD-related barriers to anxiety reduction and functional improvement. Since this is a single-case study, there is no control for comparison and hence judgments regarding effectiveness of this CBT enhancement may be questionable. In a randomised control trial examining the efficacy of a CBT manual for anxious children with HFA (age range: 7-11 years), Wood et al. (2009) demonstrated that remission of anxiety difficulties is clearly attainable. An individually focused CBT intervention was developed and empirically evaluated in the ASD population. CBT was expanded to address poor social skills and perspective taking; poor adaptive skills; and circumscribed interests and stereotypies that may cause or compound anxiety symptoms. Following a treatment algorithm (Sze and Wood, 2007), therapy modules were chosen on a weekly basis (16 sessions) using a child-centered approach. Trained students who were blind to the intervention evaluated a range of anxiety measures (diagnostic interview, parent and child reports). Eight of the ten children (intervention group) i.e. 80% were diagnosis-free at follow-up, three months post-intervention. Remission of all anxiety disorders for over half the children in the treatment group post intervention and follow-up, and a high rate of positive treatment response on the Clinical Global Impression-Improvement Scale (78.5% from intent-to-treat analyses) were attained. However, child-reported scores did not yield a significant effect for the treatment group and the sample size was very small. Although this study seems promising for anxiety disorders in children on the spectrum, further research is required to replicate these findings. Sofronoff et al. (2005) evaluated a brief CBT intervention (6 weekly 2-hour sessions) for anxiety in children (71 children aged 10-12) with Asperger’s syndrome in a RCT with three conditions (child only, child and parent and a waitlist control). Parents in both intervention groups reported significant reductions in anxiety, and parent involvement was found to be beneficial. These findings may need to be replicated with larger samples. Parents were not blind to intervention and hence these results should be considered with caution. Reaven et al. (2009) examined their manualised CBT programme (12 weekly 1.5 hour sessions, which included group, individual, child-parent time) for anxiety in children (33 children aged 7-14) with HFA. Results were promising despite the small sample size and other methodological limitations. More recently, Reaven et al. (2012) developed Facing Your Fears- Adolescent Version of a group CBT programme and demonstrated its effectiveness in a group of twenty-four children (with HFA aged 13-18 years) post intervention as well as at three-month follow-up. However, small sample size and absence of control group pose as limitations in this study. A pilot study by Scarpa and Reyes (2011) was conducted to determine the efficacy of a modified and structured group CBT approach (shorter sessions, greater use of stories and play activities and parent-training) to teach emotional states and emotional regulation strategies to young children (aged 5-7) with HFA. Findings suggest an improvement in emotional regulation as well as parent confidence in being able to manage their children’s emotions. Small sample size and initial group differences may be considered as limitations in this study. Another pilot randomised control trial by Keehn et al. (2013) evaluated the effectiveness of a modified version of the Coping Cat programme (16 weekly sessions of individually-based CBT) in reducing anxiety in children with ASD (aged 8-14). Children in the CBT condition (58% did not meet the criteria for anxiety) had significantly larger reductions in anxiety than the waitlist group and these treatment gains were maintained at two-month follow-up. Small sample size and parent reports (parents were not blind to treatment) may raise questions regarding generalisability of these research findings. More recently, Storch et al. (2013) examined the effectiveness of a modular CBT intervention as compared with treatment as usual in a RCT with 45 children (7-11 years) with high-functioning autism. Large treatment effects were observed in the intervention group, which were maintained at 3-month follow-up. From their review of current research findings, Binnie and Blainey (2013) concluded that CBT may be an effective intervention for comorbid mental health difficulties such as anxiety and depression (in adults with HFA), but is unlikely to alter core cognitive and social deficits associated with ASD. The first author’s personal bias and the limited scope of this search may have affected the conclusions drawn from this review. Laugeson and Park (2014) presented an overview of one of the only empirically supported social skills programmes, the PEERS method (includes group treatment, didactic lessons, Socratic questioning, role-play, behavioural rehearsal exercises, performance feedback, homework assignments and parent involvement), which utilised the principles of CBT to improve social functioning in adolescents with ASD. Results from four RCTs revealed significant improvements in social skills in the intervention groups, suggesting the effectiveness of these CBT methods. However, a potential conflict of interest may be present as the first author receives royalties for the sales of the manuals used in this programme. In a school-based CBT programme implemented for 26 children with HFA over seven months by Bauminger (2007), positive improvements in social cognition of group intervention were observed. However, these improvements did not generalise to playground setting. Rotheram-Fuller and MacMullen (2011) recommended that school-based providers should receive training in both CBT methods and common characteristics in ASD in order to carry out assessments prior to initiating appropriate CBT interventions. The need of the hour is for clinicians to become more research-involved (thereby bridging gaps between research and clinical practice) by improving their knowledge base on current clinical developments/research, and using evidenced interventions. Several CBT modifications and enhancements have been recommended for dealing with anxiety issues in individuals with HFA, which may be left to the discretion of clinicians, and their prior knowledge and clinical experience. The impact of this psychosocial intervention needs to be further determined by examining its long-term effects on improving the quality of life of the individuals in question. Limited access to research evidence, or lack of knowledge/skills could pose as potential barriers for some professionals (e.g. Speech Language Therapists) involved in intervention programmes for autism, which may have damaging effects because anxiety issues, if not addressed, may cause serious ramifications in this client population. Speech and Language Therapists may be required to make appropriate referrals and consult other professionals (multidisciplinary team approach) while planning targeted interventions for client-specific needs. Hence, individuals with anxiety would receive timely help and support. Most importantly, recent UK practice initiatives (NICE guidelines) on the recognition, diagnosis and management of children and adults with autism (NICE, 2011, 2012, 2013) and NICE Quality Standards for the delivery of health and social care services could ensure an improvement in the training received by concerned professionals and in turn, enhance the care and support offered to individuals with this condition (Pellicano et al., 2014). On thorough examination of current literature, there seems to be a general consensus that with certain specific modifications (development of disorder specific hierarchies; use of concrete and visual tactics; including child-specific interests; and parent participation), CBT can be used to treat anxiety disorders in HFA (Moree and Davis, 2010). The creative use of CBT with Asperger’s syndrome seems promising but further research is required to evaluate its effectiveness (Anderson and Morris, 2006). In their book on CBT for children and adolescents with HFA, Scarpa, White and Attwood (2013) provide a vast evidence base that clearly indicates the benefits of modified CBT methods in this population (Jassi, 2014). Treatments using modified CBT have been largely successful in remitting anxiety issues in ASD (White et al., 2009). In view of recent empirical findings, Cognitive Behavioural Therapy appears to be a promising treatment option in dealing with anxiety issues in children and young adults with autism (Chalfant, Rapee and Carroll, 2007; Sofronoff, Attwood and Hinton, 2005; Sze and Wood, 2007; Reaven et al., 2009, 2012; Keehn et al., 2013; Laugeson and Park, 2014). However, on account of methodological variations, a wide range of adaptations and modifications, small sample size, varied age ranges, absence of control group in some studies (Sze and Wood, 2009; Reaven et al., 2012), and limited follow-up outcome measures, these results should be considered with some caution. Since these RCT studies were conducted in specific settings, generalisation of treatment responses in other settings (school, playground, home, social settings etc.) may raise issues regarding efficacy. Although many studies have demonstrated a statistical significance in outcome measures post intervention (which only indicates that this was not a random occurrence), there is insufficient information about the effect size (which is the true indication of treatment efficacy). Moreover, most studies were conducted in the US and hence, if replicated in the UK, it would be possible to further validate the use of CBT modifications in treating anxiety in individuals with autism. Family reports, self-reports and interviews provide valuable outcome measures from service users. However, in some studies (Sofronoff et al., 2005), the assessors (family members) were not blind to intervention and hence this may pose as a methodological limitation. Service user perspectives could be considered by using mixed research designs (qualitative and quantitative) in order to understand their lived experiences (phenomenological study). Quality of life ratings can also be used to determine long-term effects. Consequently, service user perspectives can be acknowledged by ensuring that research funding is used optimally as being beneficial to the client population in question (Pellicano et al., 2014). In conclusion, regular sessions in structured settings, consistent therapists, social exposure and the use of autism-friendly strategies are significant aspects of an effective CBT framework in the treatment of anxiety issues in children and adolescents with autism (Sung et al., 2011). Further rigorous research is warranted to determine the impact of CBT (longitudinal studies) on the lives of individuals with HFA and anxiety issues (Reaven et al., 2012). 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CBT in ASD: Modifications and Adaptations
Clinical Implications:
Conclusion:
References:
