By Professor Tony Attwood and Dr Michelle Garnett
There is considerable research which confirms a high level of psychiatric conditions co-occurring with autism, for example, Lever & Guerts (2016) found a co-occurrence rate of up to 79%. The therapy with the greatest empirical evidence for success in the treatment of psychiatric conditions, including anxiety disorders, depression, addiction and eating disorders to name a few, is cognitive behaviour therapy (CBT), but what is CBT and is CBT helpful for autistic adults who are experiencing mental health conditions? In this two-part blog last week we defined CBT and examined its effectiveness as a therapy for autistic adults. In part two we describe important modifications to CBT which can be helpful when treating autistic adults with mental health conditions. Our recommendations are based on our extensive clinical experience and current empirical research.
Barriers to the acceptability and effectiveness of CBT for autistic adults
A recent study by Spain et al (2022) examined the perspectives of 50 CBT practitioners regarding potential barriers to CBT for autistic adults. Analysis of the data indicated six main factors, which are ranked from the most to least frequently reported barriers in the following list.
- Factors related to service providers such as long waiting times, lack of resources and autistic adults potentially being deemed ineligible or too complex for the service provider.
- Practitioner-related factors such as a lack of understanding and training in autism, diagnostic overshadowing, lack of knowledge of how to adapt CBT for autistic adults and appropriate metrics to measure change.
- Client-related factors such as multimorbidity, difficulties articulating thoughts and feelings, theory of mind impairments, sensory sensitivities, cognitive rigidity, difficulties tolerating change, generalising skills and adverse past experiences of therapy and services.
- CBT-related factors such as whether standard treatment protocols apply to autistic adults, and difficulties developing a therapeutic alliance.
- Factors relating to national guidelines such as the National Institute for Health and Care Excellence (NICE) in the United Kingdom.
- Considerations of the degree and nature of family support and engagement and poor links between service providers.
The study also made recommendations to enhance CBT services including increased practitioner knowledge of autism and having time to read relevant research and publications. Training is needed to include information on the core characteristics of autism and adapting standard treatment protocols for autistic clients and suggestions to enhance therapeutic communication and engagement.
Adaptations to CBT to accommodate the characteristics of autism
Throughout a CBT program, the autistic client will be required to learn about emotions within themselves and others and acquire new skills to regulate and express emotions and manage challenging life circumstances. The distinctive learning profile associated with autism will need to be recognized by the clinician, through all aspects of the therapy including affective education, cognitive restructuring, learning new skills and the exposure therapy components of CBT.
Autism is associated with a different and distinctive way of perceiving, thinking, and learning and many autistic individuals function at the extremes of cognitive ability (Attwood 2007). Despite having a Full-Scale IQ in the normal range, they usually have a very uneven cognitive profile on an IQ test. For the clinician designing a CBT program, information from an IQ assessment can be invaluable in determining learning strengths and weaknesses. For example, if the autistic client has relatively advanced verbal reasoning skills, then understanding of the concepts and strategies used in CBT may be improved by the inclusion of relevant literature in the program. When reading a text, there are no interpersonal or conversational skills required, and the autistic client can give full cognitive attention to the text. If the autistic client has relatively advanced visual reasoning abilities, learning may be facilitated by computer programs, demonstration, role play, metaphor and visual imagery with less emphasis on conversation. The phrase ‘a picture is worth a thousand words’ is particularly relevant.
Attention and executive functioning
Psychologists divide attention into four components: the ability to sustain attention, to pay attention to relevant information, to shift attention when needed, and to encode attention – that is, to remember what was attended to. Autism is associated with problems with all four aspects of attention. These characteristics need to be recognised and accommodated during therapy, for example, more frequent breaks between and within activities, highlighting important text and ensuring full attention when explaining an important aspect of therapy. Some therapy activities require the ability to shift attention during the activity and focus on new information. Unfortunately, autistic clients can have difficulty ‘changing track’ while engaged in a ‘train of thought’. There will need to be accommodation of a potential delay in processing time and cognitive closure before engaging in a new activity.
Autistic clients often have problems with executive function, especially focussing on details rather than the ‘big picture’, conceptualizing and considering the potential outcomes of various decisions, and being able to plan and prioritize. There can also be difficulties modifying decisions based on results, that is flexible thinking. A metaphor for inflexible thinking is that of a train on a singular track, representing a ‘one track mind’. Unfortunately, our clinical experience has indicated that autistic clients tend to continue using incorrect strategies, not learning from mistakes – that is, failing to ‘switch tracks’ to get to the destination (i.e., find a solution). This cognitive rigidity tends to become greater with increased anxiety. The inability to conceptualize an alternative response influences the progress of a CBT program. It is therefore important that the clinician encourages flexible thinking, asking, ‘What else could you do?’ and providing multiple choice options rather than anticipating the generation of spontaneous alternatives. Strategies to improve relaxation can also be used to facilitate flexible thinking within the CBT session and in real-life practice situations.
Another sign of impaired executive function is difficulty inhibiting a response (i.e., being impulsive) and using new strategies. The autistic client can be notorious for being impulsive in social situations, appearing to respond without thinking of the context, consequences, and previous experience. They can gradually become capable of thoughtful deliberation before responding, but under conditions of stress, or if feeling overwhelmed or confused, can be impulsive. It is important to encourage the client to relax and consider other options before responding and to recognize that being impulsive can be a sign of confusion and stress.
If the impaired executive function is formally confirmed, then the effectiveness of CBT could be enhanced by consideration of appropriate medication and implementing strategies designed to improve attention, memory, organization abilities and cognitive flexibility for autistic individuals (Moraine 2015). Another
strategy to reduce the problems associated with impaired executive functioning is to have someone act as an ‘executive secretary’. A family member may have already become an executive secretary, providing guidance with organizing and planning, promoting, and encouraging flexible thinking, especially with regards to completing the homework assignments of CBT and applying the new strategies in real-life situations. It is important during therapy to have regular communication with the client’s support network.
Fear of making a mistake
A learning characteristic of autism is a tendency to have a fear of making a mistake (Attwood 2007). When unsure what to do or say, the situation becomes a trigger for a flight, fight or freeze response. Research on the cognitive abilities of autistic children and adults has identified a conspicuous tendency to notice detail and errors more than typical individuals (Frith and Happe 1994). When combined with a fear of appearing stupid and having been ridiculed by peers at school or work, this can have a significant effect on the ability to learn. There can be a refusal to attempt a new activity that could fail, with the attitude of, ‘If you don’t try, you don’t make a mistake’.
It is important that the clinician encourages any suggestion without criticism and adopts a positive approach, implying that making a mistake is not a tragedy or a sign of intellectual disability. Making a mistake provides useful information to discover the elusive solution. In other words, ‘we learn more from our mistakes than our successes’. Autistic clients can be very sensitive to any indication of being stupid. A valuable motivation in a learning situation can be to appeal to intellectual abilities with a comment such as, ‘that suggestion demonstrates your amazing intellectual ability and creativity which can be a more powerful motivator than pleasing others such as, ‘I am so delighted with that suggestion’.
Autistic clients often have difficulties with the pragmatic aspects of language. Pragmatics refers to the use of language in social contexts and how people produce and comprehend meanings through language. Problems with pragmatics can occur in multiple areas of communication, such as talking in a monologue, lack of coherence (e.g., difficulty describing a sequence of events or providing a clear account of an event from a listener’s perspective), over-precise and technical information and turning the conversation to a favourite theme. The clinician may need to address and accommodate these characteristics, providing guidance in the ‘art of conversation’.
Autistic clients often make a literal interpretation of a comment, and this would affect the clinician’s use of idioms, figures of speech and sarcasm. It is important that the clinician provides very concrete examples of constructs and double-check that the autistic client has understood the information correctly. However, we have found that metaphors can be used as this provides a visualization of the theme or construct.
A central characteristic of autism is difficulty developing rapport and conversational reciprocity. An autistic client may not engage in social chit-chat or the give and take of conversation, making it harder for the clinician to sustain the interaction. Shorter sessions or encouragement of conversational skills may be helpful. The clinician also needs to appreciate how direct or ‘blunt’ and honest the autistic client can be, due to difficulties with Theory of Mind and understanding the social conventions of conversation. It is important not to be offended by being frequently corrected or criticized.
The clinician will also need to be aware of their client’s preference to be addressed as an autistic person or person with autism. There is the potential to offend by not using the client’s preferred form of address.
Special interests and talents
One of the central diagnostic characteristics of autism is the development of special interests. This can include information on topics such as the life cycle of a butterfly or an encyclopaedic knowledge of presidents of the USA or television programs such as Star Trek or Dr Who. The special interest has many functions, including feelings of enjoyment or euphoria in acquiring new items or knowledge on a specific theme and the intense mental focus acting as a thought blocker for feelings of anxiety, sadness, or anger. The interest can be constructively incorporated into a CBT program, for example, as an antidote to feeling sad, a thought blocker for anxiety and the ‘off switch’ for an emotional meltdown. A special interest in a character such as Harry Potter or Dr Who can be used to illustrate how a perceived hero copes with adversity, becoming a model of how they can cope with feelings such as anxiety and anger.
The interest can also be used to improve conceptualization. For example, if the special interest is weather systems, then emotions could be expressed as a weather report. The special interest can also be used in the affective education component of CBT. A project or field study for an autistic client whose special interest in aviation can be to visit an airport to observe the emotions of passengers saying farewell, greeting friends and relatives, and waiting for a boarding pass.
Consistency, certainty, and change
A characteristic of autism is a powerful desire to seek consistency and certainty in daily life, being able to relax when there is a clear routine or schedule of activities. Autism is also associated with having an intolerance of uncertainty (Maisel et al 2016; Stark et al 2021). There is also a positive correlation between intolerance of uncertainty, anxiety, repetitive behaviours, and sensory sensitivities (Hwang et al 2020).
The clinician must create a schedule of activities for the session, with clear information on the objectives and the probable duration of each activity. We now have CBT programs specifically for autistic clients who have an intolerance of uncertainty in their daily lives (Keefer and Vasa 2021; Rodgers et al 2017).
The DSM-5-TR diagnostic criteria for autism include in section B, insistence on sameness and extreme distress at small changes and rigid thinking patterns. CBT is based on the premise that the client can change their perceptions, thoughts, and reactions. However, there may be some resistance from an autistic client that change is warranted and feasible. They may require some convincing and positive feedback on the value of cognitive change.
CBT addresses maladaptive and adaptive thinking styles that can affect emotion perception and regulation. We have recognised a tendency for autistic clients to catastrophize, potentially leading to an emotional meltdown and to personalize, that is blame themselves rather than consider how other people may have contributed to the situation. There is also a tendency to avoid emotional situations rather than cope with the situation and to suppress emotions by using a thought blocker such as playing computer games. CBT will need to encourage adaptive thinking styles such as self-soothing and motivating inner speech such as ‘I can cope with this’ and considering alternative perspectives and responses (Albein-Urios et al 2021). There can be a pessimistic thinking style which will affect cognitive restructuring and the clinician can encourage reality testing to reduce the propensity for a negative perception of outcomes. There can also be a concern with the disclosure of thoughts and feelings which can be affected by difficulties with alexithymia and interoception.
Alexithymia and Interoception
Alexithymia is a difficulty recognising and accurately labelling different emotions and body sensations. A person with alexithymia can tell if they are feeling a “good” emotion or a “bad” emotion but could not necessarily tell you what they are feeling more accurately. A recent meta-analysis of studies on alexithymia and autism (Kinnaird, Stewart & Tchanturia, 2019) found that overall, the prevalence of alexithymia was much higher in autism at 50% than the 5% in the general population.
The affective education component of CBT can improve the vocabulary of an autistic client to describe their emotions, thereby diminishing the effects of alexithymia. One approach is to quantify the degree of expression such that if the precise word to describe a feeling is elusive, the client can calibrate and express their degree of emotion using a thermometer or numerical rating, thus indicating the intensity of the emotional experience.
Although the autistic client may have acquired, through the affective education component of CBT, a reasonable and precise vocabulary to describe a particular depth of emotion, there can still be considerable difficulty answering the questions, ‘What were you thinking and feeling?’ or providing a coherent and cogent answer to the question, ‘Why did you do that?’ However, there can be greater communication of inner thoughts and feelings using communication systems other than having a face-to-face conversation.
If the explanation is incoherent or elusive, there can often be greater clarity and insight using typing rather than talking. The clinician can request the explanation be included in an email or text message or working together on a computer. There can also be a greater insight into inner thoughts and feelings using music; for example, to choose a track on a CD or create a playlist that, through the music or lyrics, explains their inner thoughts and emotions. Sometimes, creating a drawing, cartoon or collage may help to express the inner workings of the mind of an autistic client. The efficacy of CBT may be enhanced by incorporating aspects of music and art therapy.
Interoception is defined as the cognitive sense of the internal state of the body. Several recent research studies have explored an association between autism and interoception (Suzman et al 2021; Trevisan, Parker and McPartland 2021). These studies have confirmed a difficulty making sense of body signals unless they are very strong and limited cognitive awareness of heart rate, breathing and muscle tension. These are physiological indicators of increasing levels of anxiety or anger. As one of the autistic participants in the Trevisan et al study said: The best way I can describe this to health professionals is that I receive a signal from somewhere I’m not exactly sure, and I have difficulties interpreting what they might mean. There can also be a misinterpretation of internal signals as described by another research participant in the same study: When I’m really sad, it physically hurts. The best way I can describe it as it’s like my whole-body stings very very badly or is on fire.
In our clinical experience, we recall an autistic client who said I only know what I am feeling by seeing what I am doing. CBT for autistic clients will need to include a detailed assessment of behavioural, verbal and thinking indicators of increasing emotional intensity. Biofeedback technology can also be used such as smart and sports watches which indicate increasing heart
CBT can be very effective when regulating relatively low levels of emotions and thereby prevent the emotions from escalating to an intensity that is difficult to regulate cognitively. Unfortunately, with impaired interoception abilities, an autistic client is often not cognitively aware of low levels of emotional intensity to consider using CBT strategies. The client, and those who support them, may only be aware of rapidly escalating emotions just a few seconds before they reach a critical level of intensity. A level when cognitive restructuring may not have sufficient ‘power’ to regulate the intensity of the emotion. At this point, the issue is not necessarily emotion management but energy management and the development of a plan to effectively discharge the energy constructively using a range of physical activities such as going for a run or slowly achieving emotional stability in solitude.
CBT for autistic clients will benefit from including strategies to improve mind-body connection such as Mindfulness-based cognitive therapy (MBCT) meditation and yoga (Tanksale et al 2021) and specific activities to improve interoception (Mahler 2019).
The sensory profile associated with Autism
We have explained the difficulties an autistic client may have with interoception, that is being less sensitive to internal sensory information. We have found that autistic clients can have an extraordinary sensory perception for exteroception, that is perceiving sensory information from the external world. Specific sounds, types of lighting, tactile experiences, and aromas can be perceived at an extreme level of sensitivity that can be extremely painful. The frequency of these experiences in daily life can lead to hypervigilance and heightened levels of anxiety.
The assessment and evaluation of the nature and degree of problems associated with a specific emotion must include aspects of sensory sensitivity. Our clinical experience indicates that for many autistic clients, repeated exposure to the painful sensory experience does not lead to habituation. Any graduated exposure programme needs to accommodate the autistic person’s sensory profile, otherwise, there is a significant risk of increasing the person’s anxiety and facilitating dropout from therapy.
There is considerable research on the sensory profile associated with autism for children and recently for adults (Tavassoli et al 2014). It is important that the clinician is familiar with the latest conceptualization of sensory sensitivity (Bogdashina 2016) and consults an Occupational Therapist who specialises in autism and sensory sensitivity.
A component of exteroception that we have identified from our clinical experience and reading autobiographies is that for an autistic client the emotional states of others can be perceived by an almost ‘sixth sense’ and the emotional states of others may ‘infect’ an autistic client, as illustrated in the following quotations: There’s a kind of instant subconscious reaction to the emotional states of other people that I have understood better in myself over the years and If someone approaches me for a conversation and they are full of worry, fear or anger, I find myself suddenly in the same state of emotion. Another relevant quotation is I am able to distinguish very subtle cues that others would not see, or it might be a feeling I pick up from them
This may lead to the avoidance of some social situations and individuals due to being sensitive to ‘negative vibes’. Should this issue be identified in the assessment stage of CBT, the clinician needs to consider how another person’s emotional state can be contagious and to develop ‘protection mechanisms’ such as the metaphor of an umbrella in a storm or a shield.
Another aspect of sensory sensitivity is that the clinician needs to arrange the therapy environment in such a way as to be tolerated by the client and to promote their comfort and relaxation. For example, the lighting may need to be dimmed or changed to non-fluorescent. Smells, such as perfumes or deodorants, may need to be minimized. Therapists may need to ask their client about tactile sensitivity before engaging in any physical gestures, such as handshakes or tapping their arm to gain attention. Calming music could be played for clients that are over-sensitive to auditory experiences such as being able to hear conversations in another room or the noise of the refrigerator in the kitchen of the clinic rooms. In contrast, autistic clients may be under-responsive to some sensations (e.g., pain), and the clinician may need to find ways to identify if the client is experiencing sensations of discomfort that need to be addressed.
Our extensive clinical experience as CBT practitioners have confirmed the value of modifying CBT in the ways described above to maximise the effectiveness of achieving the our client’s therapeutic goals. Research as described has confirmed that CBT, particularly when modified for the autistic client, can be an effective treatment modality. We would like to end this blog with a quotation from one of the clients who completed our Exploring Depression CBT programme (Attwood and Garnett 2016). A year after completing the CBT programme, we asked her whether she had experienced a return to depression. She replied “I’ve had quite a number of challenges that could have become depression, but I now have different coping mechanisms that have helped. I’ve had lowered mood at times, but I am getting better at bringing in the coping mechanisms and they have only lasted a couple of days not a couple of months.”
Where to from here?
In September 2022 we hosted a live two-day masterclass, now available as an online course, Diagnosis and Therapy for Autistic Adults. Day 1 focused on assessing and confirming autism using a range of instruments based on research studies and our extensive clinical experience. Day 2 focused on the reasons for problems with emotion perception, expression, and regulation for autistic adults, how to adapt therapy to maximise therapeutic effectiveness for autistic adults and learn strategies to develop a positive self-identity.
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