CHAPTER 1
Background to Exploring Feelings
Anxiety in Autism Spectrum Disorders
There have been many estimates of the rate of anxiety experienced by young people with ASD. In clinical settings, referrals for anxiety-based problems are among the most common for young people with ASD (de Bruin et al. 2007; Ghaziuddin 2002). A recent meta-analysis found that an average of 40% of children with ASD would meet criteria for an anxiety disorder (van Steensel, Bogels, and Perrin 2011). These rates significantly exceed the prevalence of anxiety among "typically developing" young people, and many young people with ASD present with more than one type of anxiety.
Many of the difficulties faced by young people with ASD are exacerbated, if not caused, by anxiety. It may be that behaviors interpreted as non-compliance or anger are a manifestation of anxiety (e.g., a young person's refusal to leave a classroom and go to the playground). For some children the school setting can be especially anxiety-provoking. Indeed, teacher reports of anxiety frequently reflect greater severity than parent reports (Guttman-Steinmetz et al. 2010). The relationship between anxiety and repetitive behaviors is a subject of ongoing research (Gadow et al. 2010; Wood and Gadow 2010). Some findings suggest that anxiety is likely to exacerbate repetitive and stereotypic behaviors (Joosten, Bundy, and Einfeld 2009). Severe anxiety symptoms and behaviors significantly contribute to the impaired social interaction demonstrated by these young people (Beaumont and Sofronoff 2008), potentially increasing their vulnerability to bullying and teasing from peers among other risks (Sofronoff, Dark, and Stone 2011).
So, young people with ASD are more likely to experience anxiety. The difficulties that they present with in terms of their ASD are likely to be exacerbated by anxiety. An intervention addressing anxiety in this group must accommodate the underlying presentation of ASD.
Introduction to Cognitive Behavioral Therapy
In order to successfully run the Exploring Feelings group, it is helpful to have a basic understanding of the principles of Cognitive Behavioral Therapy (CBT). CBT looks at how you think (cognitions), feel, and behave. It is based on the assumption that feelings (physical and emotional) and behavior are primarily a product of thoughts, and therefore, changing the way you think and behave can lead to changes in how you feel (Kendall 1991). An example of this can be seen in Figure 1 below.
CBT uses cognitive and behavioral interventions to challenge a person's thoughts and behavior and bring about a change in their feelings. Although CBT is used to refer to a wide range of interventions, there are a number of underlying core features which are central to CBT:
• Collaborative process: The individual, along with the therapist, takes an active role in the therapeutic process, learning to recognize their unhelpful thoughts, feelings, and behaviors, and actively challenging these using a range of techniques.
• Time-limited: The focus is on promoting independence and empowering the individual to understand their difficulties and "help themselves".
• Structured: The sessions are structured using an agenda which sets out what the session aims to achieve with the goals of the intervention clearly stated.
• Focus on the here and now: The focus is on the present difficulties the individual is experiencing.
• Focus on skill-building: The focus of the intervention is to help the individual learn to recognize and challenge their thinking patterns and behavior, and to practice these skills outside of the therapeutic sessions during homework tasks.
• Program Flexibility: Some young people, particularly those with ASD, may not be able to access cognitions as readily as others. When this is the case, it is important to adapt the program to the individual's level of understanding. For this reason, it may well be the case that the program will need to place more emphasis on behavioral change than on cognitive change, and in such circumstances this would be entirely appropriate.
For further information about Cognitive Behavior Therapy and its use with young people please refer to Beck (2011) and Stallard (2005).
Exploring Feelings Training Manual
Adapting CBT for Children with an Autism Spectrum Disorder
Moree and Davis (2010) have provided a good review of the trends in modifying CBT programs that address anxiety for young people with ASD. The predominant trends include
• developing ASD-specific hierarchies;
• using more concrete and visual strategies to explain concepts;
• including the young person's specific interest where possible; and
• engaging actively with parents.
In tailoring an intervention for young people with ASD, it is essential that the program accounts for the cognitive profiles associated with the disorder. This develops capacity to treat target symptoms within a relevant individual context. For example, a revised program may promote social and communication skills alongside strategies that circumvent difficulties with perspective-taking and Theory of Mind. It is also important to adopt a strengths-based approach that celebrates the positive attributes of participants, and allows them to work to their own strengths. In particular, the talents or special interests often identified in individuals with ASD may be used to improve their understanding or, within reason, encourage their motivation.
Specific Features to Be Taken into Account
"Typically developing" young people have an intuitive ability to accurately recognize, name, and describe felt emotions. They also have a similar intuitive ability to interpret or anticipate emotions experienced by others. Ideally, young people develop a wide range of strategies to cope with emotion. Young people with ASD have difficulties with all these abilities (Attwood 2007). Clinical experience and research has demonstrated that many young people with ASD can show deficits in understanding, processing, or describing emotions. With a limited emotional vocabulary, especially for more subtle or complex emotions (Hill, Berthoz, and Frith 2004), young people with ASD can be very "black and white" when talking about their feelings, and it is important to try to extend the range of words available to them. The psychological term "Theory of Mind" refers to the ability to recognize and understand the thoughts and emotions of other people–this is sometimes called "mind reading". There is extensive literature demonstrating that young people with ASD can have difficulties with Theory of Mind. Thus, it is important to be aware that some young people with ASD may struggle to recognize and describe their own inner thoughts and feelings, and so may not be able to tell a parent or teacher when something is distressing. Furthermore, problems with Theory of Mind can cause dysfunctional beliefs and cognitive distortions about the intentions of others. For example, a person with ASD may interpret a benevolent action to have malicious intent, leading to a fear of harm. From a neurotypical perspective, this fear may seem irrational. Though many young people with ASD have good cognitive capacity, they may show cognitive inflexibilities such as a limited range of problem solving strategies, resulting in solutions limited in range, suitability, or efficacy. In turn, this limits their ability to recover from emotional distress. Thus, the affective education and cognitive restructuring components of CBT are particularly important for this population.
Young people with ASD can often show a hyper- or hypo-reactivity to sensory input and sensory experiences. For example, they may experience the noise of a vacuum cleaner, the whirring of a ceiling fan, or the smell of your favorite perfume as aversive and distressing. Specific sensory stimuli may provoke profound anxiety, while the mere prospect of these stimuli in unfamiliar environments may evoke intense negative anticipation. Clinical experience has also identified that young people with ASD are prone to developing perfectionistic tendencies with an almost pathological fear of failure or mistakes. This leads to a tendency to "catastrophize" or "hit the panic button" in situations that others would demonstrate only a relatively mild level of anxiety (Attwood 2007).
While "typically developing" young people are likely to use strategies such as affection, disclosing feelings in a conversation, relaxation, and reflection to spontaneously access to these strategies. They also have a greater tendency to rely on destruction, solitude, and using a special interest as a means of "thought blocking" to manage anxiety (Attwood and Sofronoff, 2013). Thus, group leaders will need to be aware of young people's relative Theory of Mind abilities, sensory sensitivities, and intense emotional overreactions in the context of a limited repertoire of emotion repair mechanisms.
An individual's unique learning profile must also be recognized and accommodated. Young people with ASD are more responsive to programs that are highly structured and appeal to the logical or scientific thinking associated with ASD. Their cognitive profile can include remarkable visual reasoning abilities, so activities may be enhanced with the use of pictures and drawing and placing less emphasis on conversation (Attwood and Sofronoff 2013). Furthermore, it may take time for the participants to put their strategies into operation as they will, initially, need to be reminded of the link between thought and action.
The Exploring Feelings program is a preventive intervention. It aims to assist young people and parents to develop a ready "toolbox" of techniques they can return to when new situations or challenges arise. The effect of the therapy may not be immediately evident, as both the unique cognitive style and the remitting/ relapsing course of anxiety in young people with ASD may obscure early indications of behavioral change.
Involving Parents
There is a mounting wealth of evidence to suggest that involving parents in CBT may produce additional benefits in "typically developing" young people receiving intervention for anxiety symptoms (Dadds, Heard, and Rapee 1992; Barrett, Dadds, and Rapee 1996; and Wood et al. 2006). Programs generally focus on engaging parents to assist their child in acquiring coping skills, and to support the practice of these skills outside of sessions and in anxiety-provoking situations (Wood et al. 2006). This is thought to maximize the impact of the intervention. Studies have shown that a high percentage of parents of "typically developing" young people with anxiety also experience high levels of anxiety themselves (Barrett et al. 1996). Through active participation in the intervention, parents may derive direct, personal benefit by improving their insight and management of their own anxiety.
There is a long, successful tradition of involving parents of children with autism as "co-therapists" (Schopler and Reichler 1971). This pragmatic approach enhances children's social and communication skills, manages difficult behaviors, and addresses parents' requirements in terms of practical information, education, and advice (McConachie and Diggle 2007). The involvement of parents as co-therapists for these children in middle childhood is much less well-studied. A number of factors may affect the ability of parents to be closely involved. Parents of children with autism are even more stressed than parents of children with other disabilities, and the evidence of higher levels of depression in parents of children with autism is not fully explained by care-giving stress. Some parents feel uncomfortable "playing therapist" and feel it is important to focus on being a parent (McConachie 2003). Nevertheless, the opportunity to learn how to help their child, and to do so in a group setting with other parents to enable mutual support, is one that many parents will welcome.
The Exploring Feelings workbook describes a randomized, controlled trial in which the group was run involving parents in one of two ways: giving the parents the information as written materials, and teaching the parents all the information in the same manner as the young people (Sofronoff, Attwood, and Hinton 2005). The analysis showed that parents generally regarded the condition in which they were actively trained more positively. In addition, young people in the intervention group combined with parent-trainings showed the greatest improvement in regard to their anxiety symptoms. Involving parents is, therefore, likely to maximize the impact of the intervention, although there are a number of ways in which this can be achieved. These options are discussed further within Section Four.
Exploring Feelings Training Manual
Offering parents an opportunity to learn the material in a similar manner to the young people is likely to facilitate effective transfer of new skills to the home environment. In addition to learning program content, parents learn and discuss effective techniques to implement new strategies. Within the groups run as part of a UK feasibility pilot evaluation (McConachie et al. 2014), parents described feeling empowered to have a box of tools that they could use with their child in managing anxiety-provoking situations. Some parents also reported experiencing difficulties with anxiety themselves, and described feeling that they could use the same techniques to help to manage their own anxiety.
It may also be helpful to broaden participation within the parents' group by including a grandparent or other relative where both parents are unable to attend. They can provide additional encouragement and support to the young person at home, while supporting the parent attending the group. It is helpful if one of those attending the parents' group attends every session consistently to ensure continuity in relation to the concepts and strategies discussed.
CHAPTER 2
Setting Up a Group
Selection of Group Leaders
Exploring Feelings was written in such a way that people without extensive training in CBT would be able to deliver it. However, the program depends on some experience working with young people, running groups, and an understanding of ASD — including its potential impact on group processes. Where group leaders already have some knowledge of CBT, they are likely to be able to adapt to situations flexibly and be creative about how to deliver a particular exercise. It can be a good idea to have a mix of group leaders so that those with complementary skills can be paired.
Training of Group Leaders
Training for group leaders ought to address their needs and skill deficits. In order to tailor training sessions appropriately, it may be helpful to conduct a needs assessment with the individuals selected. It is a good idea to ask the group leaders to read through the Exploring Feelings program and the first section of this manual before they attend training. Helpful components of a group leader training package include
• the characteristics of young people with ASD and the difficulties that may arise when trying to engage them in a group setting;
• the presentation of anxiety in young people with ASD and why levels of anxiety might be so high within this population;
• an overview of the aims of the intervention with detailed focus on the goals, content, and activities for each session;
• the group leaders' expectations and feelings about running the group, highlighting that the young people may find it difficult to grasp some concepts immediately and that it may take longer than anticipated for them to accomplish some aspects of the program;
• thinking through different scenarios, such as how they might handle personal disclosures in the parent or young people's group or challenging behavior; and
• the need to be creative in engaging the young people and parents with the group tasks.
