Explaining autism to a child or adolescent

Explaining autism to a child or adolescent

The value of an explanation

Our clinical experience indicates that it is extremely important that autism is explained to a child or adolescent as soon as possible after a diagnostic assessment and preferably before inappropriate compensatory reactions such as low self-esteem are developed. The child is then more likely to achieve self-acceptance, without unfair comparisons with other children, and be less likely to develop signs of depression or choose self-isolation. The child can then be a knowledgeable participant in the design of programs, knowing his or her strengths and weaknesses, and why he or she needs to regularly see a particular specialist while siblings and peers do not. The child can also experience a huge sense of relief to know that they are not ‘weird’, just ‘wired’ differently.

When and how do you explain the diagnosis?

At what age do you explain the diagnosis? Children who are younger than about eight years may not consider themselves particularly different to their peers and have difficulty understanding a concept as complex as autism. The explanation for young children will need to be age-appropriate and provide information that is relevant from the child’s perspective. The main themes will be being different not defective and the benefits of programs to help the child make friends and enjoy playing with other children and to help achieve success with schoolwork. There can be a discussion and activities to explain the concept of individual differences and autism, for example, those children in the class who find it easy to learn to read, and others who find it more difficult. Parents can then explain that there is another form of reading, namely ‘reading’ people and social situations and that we have programs to help children who have this ‘reading’ difficulty.

There are now many resources and activities to help parents explain autism and it is up to parents to decide which ones to use to explain autism to their child.

The Attributes Activity

This family activity is for children over the age of about eight years to the early teenage years. We developed the Attributes Activity to explain the diagnosis to the child and family, including siblings and grandparents. We suggest arranging a gathering of family members, including the child or adolescent who has recently been confirmed as autistic. This activity requires temporarily attaching to the wall of the room, several large sheets of paper, or using a large whiteboard divided into several sections. Each sheet of paper or section is divided into two columns, one column headed ‘Qualities’ and the other ‘Difficulties’. We suggest the child’s mother or father as the first person to complete the first stage of the activity, which involves identifying and listing personal qualities and difficulties (these can include practical abilities, knowledge, personality, and passions). After the first focus person has made his or her suggestions, the family add their suggestions. It is important to ensure that this is a positive activity, commenting on the various attributes and ensuring that there are more qualities than difficulties. Another family member is then nominated or volunteers to suggest his or her qualities and difficulties. The autistic child or adolescent can observe and participate and understands what is expected when it is time for his or her turn.

Sometimes the autistic person is reluctant to suggest or may not consider him- or herself to have many qualities or attributes. The family are encouraged to make suggestions from their perspective. There will need to be some care when nominating difficulties so that the person does not feel victimized or despondent. The following is a representation of the Attributes Activity for an autistic child.

QualitiesDifficulties
HonestAccepting mistakes
DeterminedMaking friends
An expert on insects and the TitanicTaking advice
Aware of sounds that others cannot hearManaging my anger
KindHandwriting
ForthrightKnowing what someone is thinking
A loner (and happy to be so)Avoiding being teased
A perfectionistShowing as much affection as other family members expect
A reliable friendCoping with sudden noises
Good at drawingExplaining thoughts and feelings using speech
Observant of details that others do not see 

Exceptional at remembering things that other people have forgotten

Humorous in a unique way
Advanced in the knowledge of mathematics
Liked by adults

The Attributes activity was originally published in 2007 in Tony’s The Complete Guide to Asperger’s Syndrome and subsequently used as the basis of The Amazing Autistic Brain Cards: 150 Cards for Positive Autism Discussions by Gloria Dura-Vila published in 2021 by Jessica Kingsley Publishers. The child or parents can choose which card describes a quality or difficulty for an autistic child or adolescent.

Parents then make comments on each quality and difficulty and then explain that scientists are often looking for patterns; when they find a consistent pattern, they like to give it a name. The name to describe your pattern of abilities is autism.

We recommend saying to the child, ‘Congratulations, we have discovered that you are autistic’, and explain that this means he or she is not mad, bad, or defective, but has a different way of perceiving, thinking, learning, and relating. The discussion continues with an explanation of how some of the child’s talents or qualities are due to autism, such as his or her extensive knowledge about lawnmowers or horses, ability to draw with photographic realism, attention to detail and being naturally talented in mathematics. This is to introduce the benefits of having autism.

The next stage is to discuss the difficulties and the strategies needed to improve specific abilities at home and school. This can include the advantages of programs to improve the ability to ‘read’ people, Cognitive Behaviour Therapy (CBT) and/or medication that can help with emotion regulation, and ideas and encouragement to improve making and keeping friendships. Parents may mention successful people in the areas of science, information technology, the arts and caring professions who benefited from being autistic (Elder 2006; Fitzgerald 2005; James 2006; Ledgin 2002; Ortiz 2008; Paradiz 2002; Santomauro 2012). As Temple Grandin, an autistic woman who has become a successful engineer, author and academic, said, ‘If the world was left to you socialites, we would still be in caves talking to each other.’ (Personal communication)

When explaining the development of autistic abilities associated with an adolescent, we sometimes use the metaphor of a clearing in a forest. The ‘clearing’ represents the development of the brain, and the emergence of plants and saplings in the clearing represents the development of different brain functions. In the clearing, one sapling grows very rapidly and creates a canopy above the other plants and a root structure that restrict access to sunshine and nutrients, thus inhibiting the growth of competing plants. The dominant sapling, which soon becomes a tree, represents the parts of the brain dedicated to social reasoning. If that ‘social reasoning’ sapling does not develop quickly and become dominant, then other trees, or abilities, may become stronger. These plants represent abilities in mechanical reasoning, music, art, mathematics and science, and the perception of sensory experiences. An autistic person often prioritises the pursuit of knowledge, perfection, truth, and the understanding of the physical world above feelings and interpersonal experiences. This can lead to valued talents but also vulnerabilities in the social world and will affect self-esteem. The child or adolescent may then see autism as an explanation of his or her talents as well as difficulties.

Who else needs to know?

After explaining autism to the child or adolescent, it is important to discuss who else needs to know. Children and adolescents may be concerned about how their peers will respond to the news and any potential negative reaction. Parents need to examine and discuss the issues surrounding disclosure, based on the advantages and disadvantages of certain people knowing, and how much information to disclose. We have found that autistic adolescents can be very sensitive to the anticipated reaction of their peers and are more reluctant to share the disclosure of autism. The child or adolescent’s opinion is respected regarding the question of whether peers should be told.

If the child does want the other children to know, there needs to be an agreement as to how widely the information will be disseminated, how it will be done, and whether the autistic child or adolescent should be present. Carol Gray has developed a program, The Sixth Sense, to explain autism to a class of children in an elementary or primary school (Gray 2002). She has designed a range of classroom activities based on learning about the five senses that are extended to include a ‘sixth sense’, the social sense, which is the perception of social cues. Peers can then discover what it would be like to have difficulty perceiving the social cues and thoughts and feelings of others, and what they can do to help someone develop the sixth sense. We now have other published resources to help explain autism to peers and siblings (see resources section below).

References

Attwood, T. (2007) The Complete Guide to Asperger’s Syndrome. Jessica Kingsley Publishers

Elder, J (2006) Different Like Me: My book of autism heroes Jessica Kingsley Publishers

Fitzgerald, M. (2005) The Genesis of Autistic Creativity: Asperger’s syndrome and the arts. London: Jessica Kingsley Publishers.

Gloria Dura-Vila (2021) The Amazing Autistic Brain Cards: 150 Cards for Positive Autism Discussions Jessica Kingsley Publishers

Gray, C. (2002) The Sixth Sense II. Arlington, TX: Future Horizons.

James, I. (2006) Asperger’s syndrome and High Achievement: Some very remarkable people. London: Jessica Kingsley Publishers.

Ledgin, N. (2002) Asperger’s and Self-esteem: Insight and hope through famous role models. Arlington, TX: Future Horizons.

Ortiz, J. (2008) The Myriad Gifts of Asperger’s Syndrome Jessica Kingsley Publishers

Paradiz, V. (2002) Elijah’s Cup: A Family’s Journey into the Community and Culture of High Functioning Autism and Asperger’s Syndrome. New York: The Free Press.

Santomauro, J. (2012) Autism All-Stars: How we use our autism traits to shine in life Jessica Kingsley Publishers

Books and resources

There are many books and resources that can help explain autism to a child or adolescent and we have provided below a list of recommended resources. Parents can supplement an explanation of autism by encouraging the child or adolescent to read fiction with a central character being autistic. Kathy Hoopmann has written several excellent adventure stories that autistic children and adolescents find fascinating, and they identify with the experiences and abilities of the autistic hero of the story.

Some of the books and resources refer to Asperger’s syndrome which before 2013 was the term used to describe autism spectrum disorder level 1. All the following books are published by Jessica Kingsley Publishers with more information at www.jkp.com

Books for primary school children

Bulhak-Paterson (2015) I am an Aspie Girl

Hoopmann (2021) All Cats are on the Autism Spectrum

Hoopmann (2013) Inside Asperger’s Looking Out

Klemenc (2013) What Is It Like to be Me?

 Books for high school children

Jackson L. (2002) Freaks, Geeks and Asperger Syndrome

Monahan F (2019) Know Your Spectrum: An Autism Creative Writing Workbook for Teens

Fiction

Kathy Hoopman’s trilogy: Blue Bottle Mystery, Of Mice and Aliens and Lisa and the Lace Maker and her science fiction novel for adolescents Elemental Island

Books for parents

Dundon R (2018) Talking with your Child about their Autism Diagnosis: A guide for parents

Can CBT be helpful for autistic adults?

Can CBT be helpful for autistic adults?

There is considerable research which confirms that a high level of psychiatric conditions co-occur with autism, for example, Lever & Guerts (2016) found a co-occurrence rate of up to 79% and the majority of autistic individuals experience at least one co-occurring mental health condition (Lai et al 2019). Rates of anxiety and affective disorders, eating disorders, psychosis and traumatic stress are higher in autistic individuals than in non-autistic individuals (Hossain et al 2020) 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, we firstly define CBT and examine 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 who experience mental health conditions. Our recommendations are based on our extensive clinical experience and current empirical research.

The origins of CBT

In the 1930s psychologists began to explore aspects of behaviour and learning and Behaviour Therapy (BT) subsequently emerged as a reaction to psychoanalysis by focussing on how external events shape observable behaviour. In the late 1960s, BT included operant conditioning based on identifying the consequences of behaviour such as reinforcement and punishment. Operant conditioning and the functional analysis of behaviour became the basis of Applied Behaviour Analysis, which has many adaptations, including as an early intervention for autistic children.

CBT evolved from BT in the 1970s with the addition of social learning theory and cognitive theory. The cognitive theory emphasises the importance of information processing, including the role of memory and attention, and cognitive or thinking distortions. Social learning theory extended behavioural principles to include that we learn vicariously, by watching and imitating others. CBT accommodates aspects of a person’s cognitive interpretation and processing of events, as well as their capacity to learn by watching others. A central principle of the “C” in CBT  is that cognition and social learning mediate the relationship between life stress and psychopathology. Rigid and distorted beliefs about oneself, the world, and/or the future are explored and modified with CBT. In addition, CBT embraces learning by watching others, role-playing and skill rehearsal. The following definition of CBT from the American Psychological Association (APA, 2022) is helpful:

CBT is based on several core principles, including:

  1. Psychological problems are based, in part, on faulty or unhelpful ways of thinking.
  2. Psychological problems are based, in part, on learned patterns of unhelpful behaviour.
  3. People suffering from psychological problems can learn better ways of coping with them, thereby relieving their symptoms and becoming more effective in their lives.

CBT treatment usually involves efforts to change thinking patterns. These strategies might include:

  • Learning to recognize one’s distortions in thinking that are creating problems, and then re-evaluate them in light of reality.
  • Gaining a better understanding of the behaviour and motivation of others.
  • Using problem-solving skills to cope with difficult situations.
  • Learning to develop a greater sense of confidence in one’s abilities.

CBT treatment also usually involves efforts to change behavioural patterns. These strategies might include:

  • Facing one’s fears instead of avoiding them.
  • Using role-playing to prepare for potentially problematic interactions with others.
  • Learning to calm one’s mind and relax one’s body.

Rational for CBT and autism

CBT has direct applicability to autistic children, adolescents and adults who are recognised as having delayed abilities in understanding, expressing, and managing emotions (Attwood 2007), and who, due to impaired Theory of Mind abilities, can make false assumptions as to the intentions and emotions of others (Baron-Cohen 2001). The therapeutic approach of CBT is to encourage the autistic person to be more consciously aware of their internal emotional state, their thinking and behavioural patterns and their bodily sensations or interoception. Recent research has confirmed that autism is associated with impaired interoception abilities (Suzman et al 2021).

CBT includes learning about and improving one’s ability to respond effectively to life situations, including social situations, transitions, highly stressful learning environments etc.  These life circumstances and others commonly cause anxiety and stress for autistic adults, leading to problems coping with strong emotions such as fear, worry, anger and depression. CBT includes improving self-reflection and reflecting on the thoughts and feelings of self and others. Both of these skills are necessary for emotion management but particularly difficult for autistic individuals who, due to their different neurology, tend to have a limited repertoire of responses to emotional arousal (Attwood 2007). Within CBT there is an opportunity to learn new skills to relax the autonomic nervous system and cope with social situations and other stressful life circumstances. Thus, CBT provides an opportunity to learn self-awareness and new strategies to manage, and in some cases overcome, mental health conditions.

Confirmation of the efficacy of CBT with autistic clients

Several studies have reviewed CBT as a treatment for autistic children (Perihan et al 2020; Selles et al 2015; Vasa et al 2014) and adults (Spain et al 2015) and found that over 70% of study participants responded positively to treatment, consistent with the expected response for the non-autistic population. A meta-analysis of 48 studies of CBT with autistic participants confirmed that CBT is effective using informant and clinician report measures (Weston, Hodgekins and Langdon 2016).

Our clinical experience has suggested that the effectiveness of CBT can be improved by recognising that a client may take some time to understand the concept of cognitive restructuring with more practice sessions required. There will probably be a need to increase the number of sessions from the conventional ten-session therapy to at least 20 sessions (Spain et al 2015).  The efficacy of CBT will be enhanced by encouraging belief in the client’s ability to regulate their emotions (Sharma et al 2014) and more experiential activities and increasing compliance with homework tasks.

CBT has been successfully applied to treat adult autistic clients who are anxious (Ung et al 2015) depressed (Attwood and Garnett 2016) and autistic children who have experienced trauma (Stack and Lucyshyn 2019).

New developments in CBT

CBT is constantly evolving and adapting to research and clinical experience and discovering new applications. The new developments include Mindfulness-Based Cognitive Therapy (MBCT) as well as Acceptance and Commitment Therapy (ACT) Dialectical Behaviour Therapy (DBT) and Cognitive Remediation Therapy (CRT). CRT has been suggested as a modality to increase cognitive flexibility (Stark et al 2021) in autistic clients. Modern technology is being used in incorporating CBT principles in popular computer games such as Minecraft in the new interactive CBT game Legend Land (2022).

A note on autistic burnout

We are increasingly recognising the potential for autistic burnout when demands exceed coping abilities or burnout as a response to stressful life events and long-term camouflaging (Higgins et al 2021; Mantzalas et al 2021).  Recovery is protracted and may last months or years.  Burnout affects mental health, energy levels and cognitive abilities. According to Higgins et al (2021), the degree of cognitive confusion and overload associated with autistic burnout could limit the effectiveness of conventional CBT. For example, many clinicians may treat depression using the traditional CBT methods of behavioural activation and increasing social contact. Both these methods are likely to increase burnout leading to a worsening of symptoms. Utilising cognitive restructuring may increase rumination and “analysis paralysis.” 

We are finding that modifying CBT to include skills training for the school and workplace to provide modifications including decreasing responsibilities and creating a more autism-friendly culture is more helpful than conventional CBT strategies. This may include consideration of part-time employment, and a review of career options and strategies to reduce stress and increase energy such as Energy Accounting (Attwood & Garnett 2016). There will also need to be consideration of attitude changes by educating work colleagues and line managers about the daily challenges faced by an autistic employee about coping with changes in work schedules and expectations, sensory experiences and social engagement (Garnett & Attwood 2022). Other recommended strategies for autistic burnout include connecting with others who have shared the same experiences and arranging more time to engage in their special interest.

Our clinical experience has indicated that emotion regulation and a positive sense of self have been achieved by greater self-compassion and self-acceptance, such as the comment “I can look back now and cut myself a bit of slack” CBT can include activities to celebrate the qualities associated with autism with a positive outlook encouraging greater resilience in coping with situations associated with distress and agitation.

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.

  1. 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.
  2. 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.
  3. 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.
  4. CBT-related factors such as whether standard treatment protocols apply to autistic adults, and difficulties developing a therapeutic alliance.
  5. Factors relating to national guidelines such as the National Institute for Health and Care Excellence (NICE) in the United Kingdom.
  6. 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

Learning profile

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., finding 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 regard 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’.

Language profile

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 a 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.

Thinking styles

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 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 a out 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.

In summary

Our extensive clinical experience as CBT practitioners and many research studies have confirmed the value of CBT in reducing autistic adults’ anxiety and depression and improving their quality of life.  We would like to end this blog with a quotation from one of our clients who completed our Exploring Depression CBT program (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.

Recommended resources

Gaus, V. (2019) Cognitive-Behavioral Therapy for Adults with Autism Spectrum Disorder, second edition The Guilford Press.

Scarpa, Williams White and Attwood (2013) CBT for Children and Adolescents with High-Functioning Autism Spectrum Disorders The Guilford Press

References

Albein-Urios et al (2021) Journal of Autism and Developmental Disorders 51, 3322-3330

Attwood, T. (2007) The Complete Guide to Asperger’s Syndrome London, Jessica Kingsley    Publishers

Attwood and Garnett (2016) Exploring Depression and Beating the Blues: A CBT Self-Help Guide to Understanding and Coping with Depression in Asperger’s Syndrome [ASD-Level 1] Jessica Kingsley Publishers

APA (2022). Clinical Practice Guideline for the Treatment of Posttraumatic Stress Disorder (PTSD) in Adults; https://www.apa.org/ptsd-guideline

Baron-Cohen S. (2001) Theory of Mind and autism: A review. In. L.M. Glidden (Ed.) International review of research in mental retardation: Autism (pp.169-184). San Diego, CA: Academic.

Bogdashina O. (2016) Sensory Perceptual Issues in Autism and Asperger Syndrome: Second Edition Jessica Kingsley Publishers

Frith, U. and Happe, F. (1994) ‘Autism: Beyond Theory of Mind.’ Cognition 50, 115-132

Garnett and Attwood (2022) Autism Working: A seven-stage plan for thriving at work Jessica Kingsley Publishers

Higgins et al (2021) Autism 25, 2356-2369

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Hwang et al (2020) Autism 24 411-422

Keefer and Vasa (2021) Journal of Neurodevelopmental Disorders 13:46

Kinnaird ,Stewart, and Tchanturia.(2019). Investigating alexithymia in autism: A systematic review and meta-analysis; European Psychiatry, 55: 80–89.

Lai et al (2019) The Lancet Psychiatry 6 (10), 819-829

Lever, A.G., Geurts, H.M. Psychiatric Co-occurring Symptoms and Disorders in Young, Middle-Aged, and Older Adults with Autism Spectrum Disorder. J Autism Dev Disord 46, 1916–1930 (2016).

Legend Land (2022), www.fullpotentialpsychology.com.au

Mahler, K. (2019) The Interoception Curriculum

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