PDA in Autistic Adults

PDA in Autistic Adults

The term PDA (pathological demand avoidance) was first used by Professor Elizabeth Newson in the 1980s. It is a behavioural profile associated with avoidance of complying with requests and extreme agitation if demands are escalated. PDA was first recognised in autistic children, and further research identified associated features such as high levels of anxiety, lability of mood and impulsivity, surface sociability but a lack of social identity and a greater level of interpersonal skills and social manipulation than usually associated with autism (Newson et al., 2003; O’Nions et al., 2014).

Terms

There is currently some debate about terminology, especially the word pathological with alternative terms such as EDA, or extreme demand avoidance (Gillberg, 2014), DAP or demand avoidance phenomena (Woods, 2019) and the term PDA being changed by autistic individuals and PDA support groups to ‘pervasive drive for autonomy.’ There is also academic and clinical debate regarding classification and whether PDA should be considered a separate subgroup within the autism spectrum or a learned coping mechanism for the combination of high anxiety, ADHD and impulsivity, procrastination and impaired executive functioning and the social and sensory characteristics of autism. For simplicity, we will use the term PDA for this blog.

Screening instruments for adults

Egan, Linenberg and O’Nions (2019) have created and evaluated the Extreme Demand Avoidance Questionnaire – Adult or EDA-QA. There are 25 items in the self-report questionnaire, and these are ten of those items.

  • I am good at getting around others and making them do as I want
  • I seek to quibble and change rules set by others
  • I have a very rapidly changing mood
  • I am driven by the need to be in charge
  • I blame or target a particular person/persons
  • I have difficulty complying with demands and requests from others unless they are carefully presented
  • I obsessively resist and avoid ordinary demands and requests
  • I ensure any social interaction is on my own terms
  • I know what to do or say to upset particular people
  • I am unaware or indifferent to the differences between myself and figures of authority

The instrument was found to be both reliable and valid, and that PDA traits were partially related to ASD traits. The authors encourage other researchers to utilise the questionnaire to conduct further research into adult PDA.

Characteristics of adult PDA

White et al. (2022) used two online surveys with adults in the general population to explore the importance of autistic traits and anxiety as predictors of demand avoidance. They found that autistic traits and anxiety were unique and equally important predictors of demand avoidance. The study confirmed that EDA is linked to autism, with avoidance behaviours being anxiety driven.
We know that autism is associated with high anxiety levels. However, during and after puberty, the levels of constant and episodic anxiety can be unbearable and not resolved with prescribed medication and cognitive behaviour therapy. An autistic adolescent or adult may then resort to extreme behaviours to manage extreme anxiety levels, which includes achieving, by whatever means is effective, control over their daily life to avoid experiencing anxiety. Simple requests can make an autistic person feel anxious, out of control and harassed. There is a phobia or fear of demands (postulophobia).

A coping mechanism is to delay responding until the level of anxiety has naturally reduced, or the person has achieved greater cognitive control of their anxiety. This can include delaying tactics such as procrastination, negotiation, excuses for non-compliance and compliments to the person making the request to distract them. This would be stage 1 of avoiding demands.

If stage 1 strategies are ineffective, the second stage is the flight response to anxiety which involves being obnoxious, rude, and disrespectful to the person making the request. This is designed to make the person making the request go away and ‘flee’ the situation. The third stage is ‘fight’, that is, having a verbal fight or argument and an emotional explosion or meltdown. The meltdown will discharge the build-up of anxious energy and be an emotional ‘reset’.

All these reactions to requests consolidate avoidance behavior’s using negative reinforcement (decreasing or removing a negative outcome, in this case, unbearable levels of anxiety). However, there is another aspect of the response to anxiety, and that is ‘freeze’. Sometimes it may not be a question of consciously choosing not to comply with the request but being physically unable to. It is not ‘won’t’ but ‘can’t.’ The person knows what to do, it may even be to do something they want to do or is in their best interests and for someone they love or admire, but they are experiencing autistic inertia and ‘freeze.’

We also recognise that extreme demand avoidance may have similar features to other maladaptive coping mechanisms for anxiety, such as eating disorders, situational mutism, and self-harm.

The development of PDA in the adult years

Avoiding demands can broaden through childhood to a wide range of everyday situations, and responses to simple requests that others may not perceive as a demand, such as ‘Can you please pass me the newspaper?’ The person with PDA perceives these requests, which require a simple and momentary response, as overwhelming, and anxiety-provoking. The lack of compliance and avoidance strategies will lead to considerable distress and conflict within the family. There is increasing recognition of the genetic aspects of PDA, with the characteristics being identified within and between generations which will add to the conflict at home.

Elizabeth Newson and her colleagues were able to follow up on 18 adults with PDA, and all remained demand avoidant, with eight to about the same degree as in childhood, three more than in childhood and seven less. Thus, there are a range of outcomes, but the characteristics of PDA have the potential to be life-long (Newson et al., 2003). It should be noted that the 18 participants in the study could not benefit from the degree of understanding and support for PDA that is currently available. Our clinical experience is that PDA traits can decrease as the child moves through adolescence into adulthood, with the time between demand and meltdown becoming longer and the degree of distress less and greater cognitive regulation of anxiety.

Over time, there can be increasing insight into the effects of PDA on relationships and employment and the acquisition of a range of strategies to manage extreme anxiety and attempts to modify reactions. There can be improvements in self-regulation, communication, and ability to self-advocate, and creating a lifestyle with minimum demands.

However, there can be concerns when alcohol and illegal and misuse of legal drugs are used to reduce extreme anxiety, and we have known clients with PDA who have also developed drug dependency to manage their anxiety.

Home life

There can be difficulty coping with self-imposed and societal demands, such as personal hygiene and maintaining friendships and relationships and a tendency to break the rules, which can lead to conflict with the law. Trying to manage extreme anxiety and suppress demand avoidance can be exhausting, effecting energy levels and potentially contributing to depression. There may be great reliance on parents or a partner for emotional support and practical support for impaired executive functioning. The PDA adult will also need regular downtime and solitude to restore energy, with benefits from having access to a demand-free space at home to retreat to.

Work-life

PDA characteristics can affect work life, with employers considering the person arrogant or undisciplined. There can be a disregard for authority and the work hierarchy, and it is often difficult for the person to work conventionally with their tendency to be ‘my way or no way’. There may be more success being self-employed or running their own business, so there are fewer issues with not feeling in control. There may be procrastination issues, difficulty completing projects and meeting deadlines, and responding appropriately to a line manager’s requests, such as being polite to customers. The PDA adult often feels trapped in a job and needs novelty. We have noted a history of many changes in employers and careers.

Strategies for PDA

Many strategies to cope with PDA in children will also apply to adults. This includes giving the person options and choices rather than directives. We also recommend using declarative rather than imperative language (Murphy, 2020), for example, instead of ‘You need to clean your mess in the bathroom’ (imperative) to ‘The bathroom needs to be clean and tidy’(declarative). Our experience is that declarative comments are more likely to achieve a positive response.

There can be consideration of distracting thoughts when initiating and completing a task, such as using role-play, for example, imagining being filmed doing the task for a documentary, or using mental games, or listening to a podcast to complete the activity on autopilot. These strategies may act as an effective thought blocker for anxiety.

We also recommend joining a PDA group on Facebook and online to seek support from those who share the same daily challenges.

References

Egan, Linenberg and O’Nions (2019). Journal of Autism and Developmental Disorders 49

Gillberg C. (2014). Commentary: PDA Journal of Child Psychology and Psychiatry, 55

Newson E, Le Maréchal K, & David C. (2003). Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders Archives of Disease in Childhood; 88

O’Nions E, Christie P, Gould J, Viding E, Happé F (2014). Journal of Child Psychology and Psychiatry 55

White et al. (2022). Journal of Autism and Developmental Disorders 51

Woods R. (2019). Good Autism Practice 20

Resources

www.pdasociety.org.uk

Books

Declarative Language Handbook (2020) Linda K. Murphy ISBN: 9781734516203

Being Julia: A Personal Account of Living with PDA (2021). By Ruth Fidler and Julia Daunt. Published by Jessica Kingsley Publishers.

PDA by PDAers: From Anxiety to Avoidance and Masking to Meltdowns (2019). Ed. Sally Cat. Published by Jessica Kingsley Publishers.

PDA Paradox; The Highs and Lows of My Life on a Little Known Part of the Autism Spectrum. (2019). By Harry Thompson. Published by Jessica Kingsley Publishers.

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

Hossain et al (2020) Psychiatry Research 287, 112922

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

Maisel et al (2016) Jr. Abnormal Psychology 125, 692-703

Mantzalas et al (2021) Autism in Adulthood

Moraine, P. (2015) Autism and Everyday Executive Function. Jessica Kingsley Publishers

Perihan et al (2020) Journal of Autism and Developmental Disorders 58, 1958-1972

Rodgers et al (2017) Journal of Autism and Developmental Disorders Vol. 47(12), pp 3959-3966

Selles et al (2015) Child Psychiatry and Human Development 46, 533-547

Sharma et al (2014) Autism 18, 244-254

Spain et al (2015) Research in ASD 9

Spain et al (2022) Journal of Rational-Emotive & Cognitive-Behavior Therapy Published online

Stack and Lucyshyn (2019) Journal of Autism and Developmental Disorders 49 1613-1625

Stark et al (2021) Trends in Cognitive Sciences

Suzman et al (2021) Molecular Autism 12:42

Tanksale et al (2021) Autism 25, 995-1008

Trevisan, Parker and McPartland (2021) Journal of Autism and Developmental 51, 3483-3491

Ung et al (2015) Child Psychiatry and Human Development 46, 533-547

Vasa et al (2014) Journal of Autism and Developmental Disorders 44

Weston, Hodgekins and Langdon (2016) Clinical Psychology Review 49, 41-54

Ageing and autism

Ageing and autism

Over the last decade, we have seen an increasing number of mature adults seeking confirmation of autism in their developmental history and profile of abilities. This has provided an opportunity to explore ageing and autism using a cross-sectional approach, that is the expression of autism within specific decades and a longitudinal approach by regularly seeing some autistic adults over several decades. Research has also recently been conducted on ageing and autism using semi-structured interviews. A study by Wake, Endlich and Lagos (2021) included 150 research participants with an age range from 50 to 80 years. Tony has been an associate advisor to a PhD study that used a detailed analysis of ten autistic adults aged from 53 to 74 years (Ommensen et al). In this blog, we examine autism and ageing based on both research and our extensive clinical experience.

Autistic adults over the age of 50, colloquially known as the Baby Boomers, were unable to benefit during their childhood and adolescence from our current range of support programmes at school and home that improve social understanding and friendships skills, as well as develop a positive sense of self.  They have also not had access in their early adult years to therapy specifically designed to reduce feelings of anxiety and depression in autistic adults and they missed out on the environmental and attitude adaptations that we now have to support autistic adults at work. It is interesting that despite a lack of understanding and support throughout their life, some mature autistic adults have achieved a successful and enjoyable quality of life and well-being that will be valuable information for those designing interventions and support for future generations.

Recognition of autism late in life

Our clinical experience is that recognition of autism later in life is a positive experience, with research confirming that nearly 80% of participants feel a sense of relief and being liberated, as illustrated in the following quotations from Wake, Endlich and Lagos (2021) study.

“I felt I didn’t have to blame myself any more for being me … at least not so much.”

“It was so nice to have a name for it!  And it allowed me to join a support group and start learning more about myself, as well as being clearer about which aspects of being on the spectrum I could work on and which I would just have to live with.”

Most research participants in the study felt relieved and better about themselves following confirmation of being autistic but upset that they had lived such a great part of their lives without knowing. The overwhelming majority recognized they were different to their peers during early childhood (95%) but without knowing why. They were often intellectually able students but had miserable experiences at school. It seems that the greatest distress came from not just being different, but from not having words or concepts to express their autism or someone to confirm the pattern of autistic characteristics. All research participants regretted not having their autism confirmed earlier in life.

After the recognition of autism in their mature years, there were changes in terms of feeling better about themselves (67%) and making sense of who they are. There was a reduction in self-blame, restructuring their lives based on strengths and abilities and finding support communities. There was also less inclined to engage in camouflaging autism (Bradley et al 2021).  There were also beneficial effects on mental health as expressed by one research participant who said:

My depression lifted without medication”.

Coping reactions over time

Attwood (2007) described two internalizing and two externalizing reactions to autism that can be recognised in childhood that can extend into the adult years. The two internalizing reactions can be depression and escape into imagination or academics. The two externalizing reactions are denial of being different and suppressing autistic characteristics and creating a social mask (camouflaging). Wake, Endlich and Lagos (2021) found that these coping strategies were more common in adolescence and early adulthood, but gradually reduced in midlife. This was probably due to using other coping strategies such as self-acceptance and a positive perception of autism. There were also improvements in understanding social situations, less need for rigid routines and time alone and being bullied and teased less often. Our clinical experience confirms the change in coping reactions over time.

Social abilities

Our clients have described having a gradual improvement in social abilities and number of friendships, which included having autistic friends after confirmation of their autism. There is a desire to connect with others intellectually and in the later years, a desire to help other autistic adults. However, socializing remains effortful and energy draining and a lifelong problem.

Ommensen and colleagues found that four out of five autistic adults described experiencing an improvement in social abilities in their mature years, but for one in five, these abilities declined. We speculate that improvement of social abilities may have been due to autistic adults using cognitive rather than intuitive abilities to process social information. A characteristic of ageing in later life is a reduced functioning of the frontal lobes which may explain their reported experience of a deterioration in social abilities.

Employment and relationships

Nearly 60% of the research participants in the Wake, Endlich and Lagos study (2021) indicated that autism had made employment difficult but 26% indicated that autism had helped them in their chosen careers. Our recent self-guided workbook Autism Working provides advice, strategies and activities to manage the difficulties that can arise at work for autistic adults (Garnett and Attwood 2022). We wrote the book with the knowledge that many autistic adults struggle to find and maintain work, despite having many qualities and abilities that are advantageous in the workplace.

A source of stress in the mature years was relationship difficulties, especially a perceived failure to meet the emotional needs of their partners. The Wake, Endlich and Lagos (2021) study found that 26% of participants described how they have never really been close to anyone. The study also found more diversity in sexual orientation for both genders than in the general population. This is consistent with our clinical experience.

Quality of life

There have been several research studies on the quality of life for autistic adults. McConachie et al (2009) confirmed that quality of life was associated with a positive autistic identity and other people’s understanding and acceptance of autism. Other factors affecting the quality of life included mental health issues, the nature of friendships and external support and services. Mason et al (2018) found that the quality of life was lower for autistic adults compared to the general population and that the positive predictors for quality of life were being employed, in a relationship, and receiving support. Negative predictors were mental health conditions and the severity of autistic characteristics.

Maja Toudal is a clinical psychologist and autistic colleague in Denmark. She conducted an internet survey asking autistic adults to describe their concept of quality of life and wellbeing. Their responses included:

To not be disturbed

Not having to act a certain way just because it is supposedly normal or appropriate

Having my own place to hide

Being able to express and be understood

Being able to excel in what you love to do

Space to pursue interests/hobbies

Daily engagement with special interests

Freedom from excess sensory pain/disturbance

Having a purpose in life

Accepting my autism and working with it to create harmony in my life instead of difficulties

It is interesting to note that a sense of wellbeing and quality of life was associated with reduced aversive sensory experiences and being able to engage in a special interest. This is important information when supporting an autistic adult.

The study of Wake, Endlich and Lagos (2021) found that there was an overall improvement in the quality of life for autistic adults after age 50, both in terms of effective coping strategies and improved mental health.

Mental health

Many research participants experienced mental health problems in their teenage years, but not understanding what they were going through at the time and not being able to effectively explain their thoughts and feelings to family and professionals. In the above study, over the age of 50, high levels of anxiety were reported by 74% of research participants and depression by 72%. In the same age range, suicidal thoughts were reported for 38% of participants. One in three of the research participants reported having post-traumatic stress disorder with a history of experiencing abuse in childhood and adolescence.

According to both the Ommensen et al study and that of Wake, Endlich and Lagos (2021) there was distrust and disdain for most forms of conventional treatment and health professionals, especially medical doctors. They felt they were not listened to or understood and unfairly judged and misrepresented, as illustrated in the following quotation.

They were not interested in me. They’re interested in the drugs they can sell”.

An aversion to drugs was a common theme. Some participants had been prescribed medication for anxiety or depression but found them either unhelpful or the side effects off-putting.  There was also the issue of compliance in taking the medication as illustrated in the following quotation:

She sent me off to see a psychiatrist and he told me … give me anti-depressants and I … said well, a. I don’t think I’m depressed, b. I’m still breastfeeding and c. you know, can we not talk about this? And he said if I wouldn’t take the antidepressants there was no point me seeing him. So that was the end of our visits. I didn’t take the antidepressants”.

Recovery from depression was slow and lengthy but the majority of participants reported that as they had grown older, they had experienced an improvement in their mental health. This was often due to discovering strategies themselves through identifying patterns in their experiences and emotional reactions and reading and experimentation rather than advice or therapy from health professionals. Several participants in the Ommensen et al study were of the view that psychological treatment was not worthwhile unless it was tailored to an autistic individual’s unique needs and circumstances. Since for most research participants professional help was not seen as a therapeutic option, alternative self-regulatory strategies were actively discovered and employed to regulate emotions. Some of these were maladaptive practices such as the use of alcohol, but most were positive.

Mindfulness, meditation, and spiritual and physical activities, such as gardening, were consistently mentioned as successful techniques for emotional self-regulation. These activities, and sometimes a combination of them, were typically enjoyed as calming solitary pursuits that had developed over the life span and were cited by several participants as important to helping them to achieve a sense of peace and emotional stability without the negative side-effects of medication.

Some conventional cognitive techniques were successful, such as positive self-talk

“I used to try and sort of gee myself up and say, “oh come on for goodness sake” you know you can manage this” and all that sort of thing.”

According to Ommensen et al, with time and life experience, participants had developed greater self-awareness and, ultimately, self-acceptance and self-forgiveness. Their positive appraisal of life left less room for negative emotions such as regret and guilt. The sub-theme of resilience was prevalent throughout the two studies. The participants conveyed stoicism and a lack of self-pity as they each described how they managed, with persistence and determination, a lifetime of mental health issues, relationship and employment difficulties, and feelings of difference and failure. This suggests that acceptance-based therapies would be particularly beneficial for autistic adults.

Medical issues

Research and clinical experience indicate that menopause can be a difficult time for autistic women with an increase in autistic characteristics and more meltdowns as illustrated in this quote: “During menopause I was on 3 meltdowns per week” (Mosely, Druce and Turner-Cobb 2020). Throughout life, there were concerns regarding insomnia or other sleep disorders, allergies and obesity.

There is ongoing research exploring whether there is an association between autism and early onset dementia (Vivanti et al 2021) and Parkinson’s disease (Croen et al 2015). Preliminary research indicates that there may be significantly increased rates of these two medical conditions in autistic adults.

Factors contributing to a positive outcome

Our clinical experience and research suggest that factors contributing to a positive outcome tend to be personal and interpersonal. Personal factors are self-acceptance and a lack of self-pity, such as the comment “I can look back now and cut myself a bit of slack” celebrating the qualities associated with autism and a positive outlook. This includes having a sense of humour, positive reframing, and less self-blame such as the comment:

“I used to think I could make people like me if I tried hard enough. Therefore if they didn’t like me, it was my fault”.

Another factor was discovering new enjoyable activities such as volunteer work and community groups and feeling there was less pressure to conform to society’s standards and focus on activities that brought pleasure and a sense of fulfilment. For many, life experience engendered resilience and, in later life, increased self-awareness and acceptance. Interpersonal factors include connecting with other autistic adults and development of autistic friendships and a sense of belonging.

As explained by Ommensen et al, relative to earlier life stages, later life in the typically developing population generally brings emotional stability and improved emotional wellbeing, reductions in mental health problems, contentment, and a positive outlook. It seems that this pattern is also reflected in the developmental trajectory of autistic adults. There is the potential for positive change in the mature years.

Where to from here?

On September 7 and 8 later this year, we will be conducting a live two-day Masterclass in Sydney: Diagnosis and Therapy for Autistic Adults. Day one will focus on assessing and confirming autism using a range of instruments based on research studies and our extensive clinical experience. The Masterclass will assist clinicians to recognise autism in a variety of presentations, assessing co-morbidity and differential diagnoses and will review the range of screening instruments and standardised assessments or scales. The second day will take the themes of this blog further, increasing the clinician’s knowledge of autism and how to modify therapy for a range of autistic clients.

Professionals can choose to attend live in Sydney, Australia, or via live webcast. The recorded training will be available for participants to view for 60 days after the event. The webcast will also eventually be posted in our library of webcasts that can be accessed for several months after the original date of webcasting.

References

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

Bradley et al (2021) Autism in Adulthood 3 320-329

Croen et al (2015) autism 19 814-823

Garnett and Attwood (2022) Autism Working: A Seven-Stage Plan to Thriving at Work London, Jessica Kingsley Publishers

Mason et al 2018 Autism Research 11, 1138-1147

McConachie et al 2020 Autism in Adulthood 2  4-12

Mosely, Druce and Turner-Cobb (2020) Autism 24 1423-1437

Ommensen, B. University of Queensland PhD thesis to be submitted

Vivanti et al (2021) Autism Research 1-11

Wake, Endlich and Lagos (2021) Older Autistic Adults in Their Own Words: The Lost Generation AAPC Publishing, Shawnee, KS.

Autism and sleep

Autism and sleep

Introduction

There is an association between autism and difficulties falling asleep, staying asleep and the quality of sleep for autistic individuals of all ages (Bishop-Fitzpatrick and Rubenstein 2019; Stewart et al 2020). A review of research on autism and sleep confirms that between 44% and 86% of autistic children and adults have sleep issues that includes a delay in falling asleep, waking multiple times and difficulty returning to sleep and less duration of sleep when compared to age peers. (Johnson and Malow 2008; Wintler et al 2020). Insomnia is considered as a comorbidity to autism but may be an integral part of autism.

Sleep profile associated with autism

The anticipated time to fall asleep (sleep onset latency) for typical adolescents and adults is less than 30 minutes but around 12 minutes longer (over 40 minutes) for autistic teenagers and adults (Jovevska et al 2020).

During childhood there can be resistance to going to bed and the development of elaborate bedtime routines to relax and facilitate sleep that can become more complex and take longer to complete (Stewart et al 2020).

Our clinical experience is that racing thoughts and ruminating can inhibit falling asleep for autistic adolescents and adults. A coping strategy is engaging in computer games and electronic media as a thought blocker for anxious or depressive thoughts. This strategy will affect sleep onset in terms of the thoughts and emotions returning when the computer game is switched off and there is the thought ‘void’ when the light is switched off.

We recognise five stages of sleep, namely Stages 1-4 and Rapid Eye Movement (REM) sleep. Research has indicated that autism is associated with less slow wave sleep, that is Stages 3 and 4 (Lambert et al 2016) and a disturbance of REM sleep. REM sleep is more prevalent at the end of the night or early morning and is a time when there are random eye movements, a propensity to dream vividly and the brain is more active than at any time during the day. During REM sleep the brain processes the cognitive and emotional experiences of the day and stores thoughts and memories. An equivalent to a computer engaging in a ‘de-frag’ process. REM sleep in a typical child comprises around 23% of sleep time but only 15% in autistic children (Buckley et al 2010). Autistic children are likely to be chronically REM deprived.

The total duration of sleep of autistic children is likely to be less than their peers by between 17 and 43 minutes each day, shortened by later bedtimes and earlier waking, and characterised by waking 3 or more times in the night (Humphreys et al 2013). The shorter duration of sleep can also reduce the amount of REM sleep (Vermeulen et al 2021). Thus, the sleep profile associated with autism includes chronic sleep deprivation.

Effects of sleep deprivation

Sleep deprivation is not always expressed as feeling lethargic or sleepy during the day. Sleep deprivation can lead to hyperactivity rather than hypoactivity (Ming et al 2009). The sleep problems of autistic children and adolescents are associated with increased physical aggression, irritability and inattention (Mazurek and Sohl 2016). When sleep improves, there is an improvement in behaviour, attention span and mood.

Mature autistic adults who have sleep issues are more likely to have fragmented sleep, and longer daytime napping and report signs of depression (Stewart et al 2020).

Insomnia may increase stress levels and the risk for suicidal thoughts and relapse of a major depressive disorder. (APA 2022).

Parents of autistic children who have sleep problems are themselves more likely to have higher levels of stress, anxiety, depression, and fatigue (Hunter et al 2020).

Causes of sleep issues associated with autism

There are many causes of sleep issues for autistic children and adults. One of the major causes is one of the diagnostic criteria for autism, a hyper-reactivity to sensory experiences. Specific sensory experiences can create a startle response and considerable discomfort or pain which inhibits falling asleep. These can be sudden ‘sharp’ noises such as the sound of a distant dog barking or a high-pitched continuous noise such as the sound of a refrigerator in the kitchen. There can be tactile sensitivity to certain bed clothes and bed linen and light sensitivity in terms of the nature and degree of illumination. There can also be a sensitivity to the bedroom temperature and internal sensory experiences such as the sounds of digestion. Unfortunately, repeated exposure strategies, such as ‘just get used to it’ are not effective in reducing an autistic person’s sensory sensitivity.

Another significant cause of sleep issues is anxiety. There is an association between autism and high levels of chronic anxiety. Our clinical experience is that autistic individuals have great difficulty acquiring the ability to relax and self-sooth, which is needed to facilitate falling asleep. The coping strategies can include creating bedtime rituals to alleviate anxiety, blocking anxious thoughts by engaging in computer games and requiring a parent to be present to sooth and encourage relaxation when falling asleep and when waking in the night.

There are also medical and psychological causes of sleep issues. Recent research has suggested that there are gene mutations associated with autism that affect the production and levels of melatonin, a natural hormone that controls sleep onset (Yan and Goldman 2020).

Insomnia is associated with prescribed medication such as stimulants to treat ADHD and SSRI medication to treat anxiety and depression can create vivid dreams which will disrupt sleep. Insomnia is also a sign of depression and there is a high association between autism and depression. Psychological causes can include nightmares and hyperarousal due to trauma.

Assessment of sleep quality and duration

The recent designs of sports watches often include the measurement of sleep quality and duration. This can provide valuable information for parents and autistic adults affirming sleep issues and provides a baseline to measure any progress in resolving sleep issues.

Greater information on sleep characteristics can be obtained from actigraphy using specialised wristwatch like devices. These are not overly expensive, and the sleep data can be valuable for sleep specialists. There are also sleep questionnaires such as the Sleep Assessment and Treatment Tool (SATT) developed and evaluated by Gregory Hanley which is freely available on the Internet.

A personal sleep assessment may be conducted at a sleep clinic with most major hospitals having a sleep clinic with a team of specialists in various aspects of sleep and mental and physical health.

Strategies to improve the depth, quality, and duration of sleep

There are a range of strategies to help autistic children and adults reduce or resolve sleep issues. These include specific medication, addressing sensory sensitivity and anxiety and sleep education programmes.

Prescribed melatonin (immediate and prolonged release) can significantly improve sleep latency and sleep quality for autistic children and adolescents (Lalanne et al 2021). A general practitioner or psychiatrist would be able to review potential medical and prescription factors that could affect sleep.

An assessment of the autistic child or adult’s sensory profile and advice from an Occupational Therapist or Clinical Psychologist may address sensory issues that affect sleep.

A Clinical Psychologist specializing in autism and anxiety will be able to provide guidance with regard to reducing overall anxiety levels and developing more appropriate and effective means of reducing anxiety before falling asleep and when waking in the night. This can provide great relief for parents.

Sleep education programmes for an autistic child can include the creation of relevant Social Stories on sleep routines and dreams (Gray 2010) and parents may benefit from parent-based sleep education programmes (Marlow et al 2014; MacDonald et al 2021; McLay et al 2021; Moss et al 2014). We now also have wise advice from autistic adolescents themselves on encouraging greater quality and duration of sleep (Pavlopoulou 2020).

Journal references

APA 2022 Diagnostic and Statistical Manual of Mental Disorders – Text Revision

Bishop-Fitzpatrick and Rubenstein 2019 Research in ASD 63

Buckley et al 2010 Archives in Pediatric Adolescent Medicine 164

Gray 2010 The New Social Story Book Future Horizons, Arlington

Humphreys et al 2013 Archives of Diseases in Childhood 99

Hunter et al 2020 Research in ASD 79

Johnson and Malow 2008 Current Treatment Options in Neurology 10

Jovevska et al 2020 Autism in Adulthood 2

Lalanne et al 2021 International Journal of Molecular Sciences 22 1490

Lambert et al 2016 Research in ASD 23

MacDonald et al 2021 Research in ASD 81

Mazurek and Sohl 2016 Journal of Autism and Developmental Disorders 46

Marlow et al 2014 Journal of Autism and developmental Disorders 44

McLay et al 2021 Journal of Autism and Developmental Disorders 51

Ming et al 2009 Clinical Medicine Insights: Pediatrics 3

Moss et al 2014 Journal of Autism and Developmental Disorders 44

Pavlopoulou 2020 Frontiers in Psychology 11 Article 583868

Stewart et al 2020 Research in ASD 77

Vermeulen et al 2021 Journal of Child Psychology and Psychiatry 62

Wintler et al 2020 Journal of Neuroscience Research. 98 1137-1149

Yan and Goldman 2020 Canadian Family Physician, 66(3), 183-185

Do I have autism and ADHD?

Do I have autism and ADHD?

During a diagnostic assessment for autism with an adult it is quite common for the adult to also query whether they have attention deficit hyperactivity disorder (ADHD). So, what does a diagnostic assessment for ADHD entail? And can it be subsumed within a diagnostic assessment for autism?

Diagnosis of autism

Best practice guidelines for diagnostic assessment of autism include spending time with the person seeking the diagnostic assessment, at least one hour, but sometimes up to 3 hours. It is important to also gain psychometric data, usually from questionnaires, but sometimes from assessments of particular skills, for example the ability to read non-verbal communication, or to read emotion in the eyes. Collection of collateral information, that is information from people other than the person being diagnosed, for example a partner, a family member or a friend, is necessary. This information can be gathered either during the diagnostic interview, through self-report questionnaires, or a telephone or Internet appointment later.

Assessing for ADHD

It is entirely possible to assess for ADHD at the same time as assessing for autism and is indeed advisable. For both conditions it is very important to gain information about the developmental history of the person, from their earliest memories through to the end of high school. When interviewing for an assessment of autism there is a great emphasis on the social aspects of the person’s childhood and adolescence, when assessing for ADHD there also needs to be a strong emphasis on the academic aspects of their schooling experience. Particular questions about the person’s capacity for focus, attention, organising their belongings and time, how well the person could plan and prioritise academic learning, and reference to these concerns by teachers in school reports are very helpful.

Being autistic and having ADHD

Research has shown over several decades now that having a comorbid diagnosis of ADHD with autism is very common and occurs in the majority (60%) of autistic children and adolescents (Stevens, Peng and Barnard-Brak 2016). A more recent meta-analysis showed the range across 63 studies to be between 40 and 70% (Rong et al, 2021). Even if the person does not meet full diagnostic criteria for ADHD, they often show fragments of the condition. We also find that it is common for an autistic adult with ADHD to navigate high school and university successfully, but once their life becomes more complicated, for example with a partner, a mortgage and a family, they start having significant difficulties managing and completing the varied and multiple demands on their time and attention. Without understanding that they have ADHD, the person can begin to question their own self efficacy, and even their own self-worth, as they feel that they are failing life tasks that “everyone else” seems to be navigating. We have seen many adults present to our clinic for depression, only to discover that the driving force of the depression is untreated ADHD.

Our recommendations for diagnosticians

As a diagnostician commencing a diagnostic assessment for autism, it is our recommendation that you both screen for ADHD and be prepared to fully assess ADHD during the diagnostic assessment, or to refer for more testing if that is deemed to be needed.

They are a number of excellent screeners for adult ADHD. We use the Adult ADHD Self-Report Scale (ASRS) from Novopsych. The scale has good internal consistency, and concurrent validity. It has high sensitivity and moderate positive predictive power, suggesting it would rarely miss ADHD in an adult who had ADHD. It has only moderate specificity indicating it that it is quite successful at not identifying someone with ADHD when they do not have the disorder. The norms are based on a large population. Based on percentiles, it is easy to determine whether the individual is likely to have ADHD.

As in any diagnostic assessment, it is important to assess not only for inclusiveness and exclusiveness to the diagnostic assessment criteria, but also determine intervention and a plan for support. Sometimes it can become apparent that there is an underlying learning disability, and more intensive psychometric assessment is warranted.

Typically, an ADHD diagnosis requires understanding and observation of the person’s functioning across multiple settings, for example home, leisure, school and or work. Multiple informants make the diagnostic assessment more accurate and reliable.

Whether to include neuropsychological assessment for a diagnostic assessment for ADHD is reliant on clinical judgement. Our general consideration is, if more detailed information is required to ascertain funding for support, or detailed supports for university and/or work, it is more likely that we will refer for neuropsychological assessment. This assessment typically involves assessment of auditory short-term memory, working memory, attention, concentration, and planning tasks.

Once a diagnosis is made, it is important to speak with the client about their options for treatment. There is considerable research suggesting that a combination of medication, dietary and lifestyle changes, and use of particular strategies to minimise the effects of ADHD on daily life, can be very helpful. If a positive diagnosis of ADHD is made, refer to a psychiatrist who is skilled in this area for consideration of the use of medication.

Where to next?

If you are interested in finding out more about diagnostic assessment for an individual who may have autism and/or any other comorbid conditions including ADHD we will be presenting our Masterclass for health professionals involved in diagnosis for autism in Sydney in September 2022. The event is open to medical and allied health professionals and will be web cast for those who are unable to attend live. Here is the link:

If you are a professional involved in providing therapy and support for autistic adults, you will find Day 2 of our Masterclass particularly helpful:

References

Stevens, Peng and Barnard-Brak (2016) Research in Autism Spectrum Disorders 31, 11-18.

Rong, Y., Chang-Yiang, Y., Yang, Y., Jin, Y., & Wang Y. (2021). Prevalence of attention-deficit/hyperactivity disorder in individuals with autism spectrum disorder: A meta-analysis. Research in Autism Spectrum Disorders, 83. https://doi.org/10.1016/j.rasd.2021.101759

The learning profile associated with autism

The learning profile associated with autism

Autistic children have an unusual profile of learning abilities that can often be recognised in very early childhood. Some pre-school autistic children have reading and numeracy abilities above the level of their peers. Such advanced literacy and numeracy abilities may have been self-taught through watching educational television programs, computer games and YouTube videos. There are autistic children who appear to easily ‘crack the code’ of reading, spelling, or numeracy; indeed, these subjects may become their special interest at school. In contrast, some autistic children have considerable delay in academic skills and an early assessment of learning abilities suggests the characteristics of dyslexia and dyscalculia. There seem to be more autistic children than one might expect at the extremes of cognitive ability.

Teachers soon recognize that the autistic child in their class has a distinctive learning profile, often being talented in understanding the logical world, noticing details and patterns and remembering facts, and the artistic world with a talent for drawing or music. However, the child can be easily distracted or distressed by sensory and social experiences, and when problem solving, appears to have a ‘one-track mind’ and a fear of failure.  As the child progresses through the school grades, teachers identify problems with organizational abilities, flexible thinking, and group projects. End of year school reports often describe a conspicuously uneven profile of academic achievement with areas of excellence and areas that require remedial assistance.

It is extremely important that teachers and parents know the learning profile of an autistic child to improve his or her academic achievement. This is especially important as children usually have two reasons to attend school – to learn and to socialize. If the autistic child is not successful socially at school, then academic success becomes more important as the primary motivation to attend school and for the development of self-esteem and self-identity. 

Verbalizing and visualizing

Valuable information on an autistic child’s learning profile can be obtained from formal testing using a standardized test of intelligence and tests of academic achievement. Standardized tests of intelligence have at least ten sub-tests that measure a range of intellectual abilities. Some sub-tests measure specific components of verbal reasoning, while others measure components of visual reasoning.

Some autistic children have relatively advanced verbal reasoning skills and may be colloquially described as ‘verbalisers.’ If such a child has difficulty acquiring a particular academic ability in the social and sensory interactive ‘theatre’ of the classroom, then his or her knowledge and understanding may be improved by solitary and quiet reading about the concept. If the autistic child has relatively advanced visual reasoning skills, a ‘visualizer’ then learning may be facilitated by observation of the teacher’s actions rather than listening to their instructions and learning from a computer screen. Learning from a computer screen significantly reduces any difficulties with social and conversational abilities. The ‘verbalisers’ may eventually be successful in careers where verbal abilities are an advantage, for example the legal professions or being an author, and ‘visualizers’ may be successful in careers such as engineering or the visual arts.

Attention

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. Autistic children appear to have problems with all four aspects of attention. The duration of attention to schoolwork can be an obvious problem but the degree of attention can vary according to the level of motivation. If the child is attending to an activity associated with his or her special interest, the level of attention can be excessive. The child appears to be oblivious of external cues that it is time to move on to another activity or to pay attention to the comments, requests and instructions of a teacher or parent. The amount of sustained attention can also depend on whether the child wants to give the attention to what an adult wants them to do. The autistic child may have his or her own agenda for what to attend to.

Even when the autistic child appears to be attentive to the task set by the teacher, he or she may not be attending to what is relevant in the material in front of them. Typical children can more easily identify and selectively attend to what is relevant to the context or problem. Autistic children are often distracted and confused by irrelevant detail, and they don’t automatically know what the teacher wants them to look at.  They may need specific instruction at to exactly what to look at on the page.

Some academic activities require the ability to shift attention during the activity and focus on new information. Unfortunately, autistic children can have difficulty ‘changing track’ while engaged in a ‘train of thought’. There can also be problems with memory processes such that the recently learned information is not stored or encoded as well as one would expect. Autistic children may not remember what to attend to when they encounter the same problem again. This characteristic can affect social situations. Autistic children process social information using intellect rather than intuition and can have problems remembering what the relevant social cues are and changing their conversation ‘track’ when interacting with more than one person.

The autistic child often has considerable problems switching thoughts to a new activity until there has been closure, i.e., the activity has been successfully completed. Other children appear to have the capacity to pause a thought or activity and to easily move to the next activity. In the classroom, autistic children can resist changing activities until they have completed the previous activity, knowing that their thinking cannot as easily cope with transitions without closure. A teacher or parent may need to provide multiple verbal indications when an activity is going to change, perhaps counting down and if possible, allowing the autistic child extra time to finish the task.

Executive functioning

Autistic children and adolescents often have problems with executive function. Perhaps the best way to understand the concept of executive function is to think of a chief executive of a large company, who can perceive the ‘big picture’, consider the potential outcomes of various decisions, is able to organize resources and knowledge, plan and prioritize within the required time frame, and modify decisions based on results. Such executive function skills may be significantly delayed in autistic children and adolescents.

In the early school years, the main signs of impaired executive function are difficulties with inhibiting a response (i.e., being impulsive), working memory and using new strategies. The autistic child can be notorious for being impulsive in schoolwork and in social situations, appearing to respond without thinking of the context, consequences, and previous experience. By the age of eight years, a typical child can ‘switch on’ and use his or her frontal lobe to inhibit a response and think before deciding what to do or say. The autistic child can 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 child to relax and consider other options before responding and to recognize that being impulsive can be a sign of confusion and stress.

Working memory is the ability to maintain or hold information ‘online’ when solving a problem. The autistic child may have an exceptional long-term memory and is perhaps able to recite the credits or dialogue of his or her favourite film but has difficulty with the mental recall and manipulation of information relevant to an academic task. The child’s working memory capacity may be less than that of his or her peers. Other children have a ‘bucket’ capacity for remembering and using relevant information, but the autistic child has a working memory ‘cup’ which affects the amount of information he or she can retrieve from the memory ‘well’.

Another problem with working memory is a tendency to quickly forget a thought. One of the reasons autistic children are notorious for interrupting others was explained by an autistic child who said he had to say what was on his mind to his teacher because if he waited, he would forget what he was going to say.

Impaired executive function can include difficulties with flexible thinking.  Typical children can quickly react to feedback and are prepared to change strategies or direction with new information. Autistic children tend to continue using incorrect strategies, even when they know their strategy isn’t working, as they have difficulty conceptualizing different thoughts and reactions.

In the high school years, problems with executive function can become more apparent as the school curriculum changes to become more complex and self-directed, and teachers and parents have age-appropriate expectations based on the maturing cognitive abilities of age peers. In the primary school years, success in subjects such as History can be measured by the ability to recall facts such as dates. By the high school years, assessment in history has changed, and requires that the child shows ability in writing essays that have a clear organizational structure, and that he or she can recognize, compare, and evaluate different perspectives and interpretations. Autistic adolescents with impaired executive function have problems with the organizing and planning aspects of class work, assignments, essays, and homework.

There can also be problems with self-reflection and self-monitoring. By the high school years, typical children have developed the capacity to have a mental ‘conversation’ to solve a problem. The internal thinking process can include a dialogue, discussing the merits of various options and solutions. This process may not be as efficient in the thinking of an autistic adolescent as it is in typical peers. Many autistic adolescents ‘think in pictures’ and are less likely to use an inner voice or conversation to facilitate problem solving. The autistic adolescent may need the teacher or parent’s voice to guide his or her thoughts.

One strategy to reduce the problems associated with impaired executive functioning is to have someone act as an ‘executive secretary’. The child’s mother may have realized that she has already become an executive secretary, providing guidance with organizing and planning, especially with regards to completing homework assignments. The executive secretary (a parent or teacher) may also need to create a time schedule, proofread draft reports and essays, colour code subject books, encourage alternative strategies and create ‘to do’ checklists, with a clear schedule of activities and the duration of each activity.

Such close monitoring and guidance may initially appear to be excessive for an adolescent or young adult with recognized intellectual ability. A parent who provides the support as an executive secretary may be labelled as overprotective by school agencies and family members, but that parent has learned that without such support, the autistic child would not achieve the grades that reflect his or her actual abilities. We encourage a parent or teacher to take on this very important role of executive secretary. We hope that this will be a temporary appointment as the autistic adolescent and young adult eventually achieves greater independence with organizational skills.

Coping with mistakes

The learning profile of autistic children can include a tendency to focus on errors, a need to fix an irregularity and a desire to be a perfectionist. This can lead to a fear of making a mistake and the child’s refusal to commence an activity unless he or she can complete it perfectly. The avoidance of errors can mean that autistic children prefer accuracy rather than speed, which can affect performance in timed tests and lead to their thinking being described as pedantic. An autistic girl complained that her teacher frequently asked her to hurry up but said that if she did hurry up, she might make a mistake.

It is important to change the autistic child’s perception of errors and mistakes. Autistic children often value intellectual abilities in themselves and others, and young children can be encouraged to recognize that the development of cognitive ‘strength’ is like that of physical strength, in that the brain needs exercise on difficult or strenuous mental activity, that includes making mistakes, to improve intellectual ability. If all mental tasks were easy, we would not improve our intellect. Intellectual effort makes the brain smarter.

Adults will need to model how to respond to a mistake and have a constructive response to the child’s errors, with comments such as, ‘This is a difficult problem designed to make you think and learn, and together we can find a solution.’ It must also be remembered that while there can be a fear of making a mistake, there can be an enormous delight in getting something right, and success and perfection may be a more important motivator than pleasing an adult or impressing peers.

Cognitive talents

There are autistic children and adults who have cognitive abilities that are significantly above average and are sometimes described as gifted and talented. This can provide both advantages and disadvantages to the child. The advantages include a greater capacity to intellectually process and learn social cues and conventions. Advanced intellectual maturity may be admired by a teacher and winning academic competitions can lead to greater status for the child and school. Academic and artistic success can raise self-esteem and contribute to social inclusion; their social naivety and eccentricity can be accepted as part of the ‘absent minded professor’ or artistic genius image. However, there are disadvantages.

Autistic children are more socially and emotionally immature than their peers, which contributes towards their being socially isolated, ridiculed, and tormented. Having considerably advanced intellectual maturity in comparison to one’s peers could further increase social isolation and alienation. The child may have no peer group socially or intellectually in his or her classroom.  Having an impressive vocabulary and knowledge can lead adults to expect an equivalent maturity in social reasoning, emotion management and behaviour; they may be unjustly critical of the child who is unable to express these abilities as maturely as his or her age peers.

We have recently recognised that the learning profile associated with autism can also include alexithymia, which can affect the expression of academic talents. Alexithymia is a difficulty converting thoughts into words. The autistic child’s conceptualization or solution perhaps to a mathematics problem may be extraordinary. However, while the autistic child knows their solution is perfect, they may have genuine difficulty explaining how they achieved that solution.

Summary

Autistic children and adolescents have a different way of thinking and learning. This can lead to academic talents and difficulties. Teachers and parents need to be aware of the autistic students personal learning profile and to modify the classroom curriculum to accommodate their distinct learning profile. This can include identifying learning talents and to recognise that autistic people can produce a new perspective on the problems of tomorrow.

Nonspeaking autism and body language

Nonspeaking autism and body language

Autistic children and adults who do not develop speech can express their thoughts and feelings by body language. There can be conventional body language but also the development of unusual or autistic mannerisms whose communicative intent is interpreted by a parent or teacher. These ‘signature’ mannerisms can express emotions such as happiness by literally jumping with joy and a happy ‘dance’, anxiety by rocking and pacing and agitation by biting their hand or arm. The mannerisms have a message that can include:

I’m happy

I don’t know what to do

Leave me alone

Please help me

I feel anxious and stressed

We recommend that parents and teachers record on their mobile or cell phone the mannerisms that express different dimensions and levels of emotion and specific thoughts. These could be the body language that express different levels of happiness such as finger movements that resemble playing a piano at a low level of happiness to jumping up and down with intense excitement. It will be important to record the mannerisms that indicate increasing levels of agitation that precede a meltdown. The strategy is to create a ‘foreign phrase’ dictionary of mannerisms that ‘translates’ the action so that parents and teachers can respond appropriately.

Some autistic mannerisms have been conceptualised as examples of ‘stimming’ and that they must be inhibited. However, the mannerisms often have a constructive purpose to reduce stress and nervous energy. A speaking autistic person described how his mannerisms can “release the pressure that’s built up inside me, as though a weight has been lifted from my chest” Intervention can encourage a range of appropriate alternative stress reduction actions.

There are mannerisms that are mesmerising and created to reduce sensory sensitivity. Temple Grandin described how:

“Intensely preoccupied with the movement of the spinning coin or lid, I saw nothing or heard nothing. People around me were transparent and no sound intruded on my fixation. It was as if I was deaf. Even a sudden loud noise didn’t startle me from my world. But when I was in the world of people, I was extremely sensitive to noise” Grandin and Scariano 1986.

We recognise that there can be a mind-body division associated with autism and some mannerisms can be a way of achieving a mind-body connection. Some mannerisms serve the function of ‘starting the engine’ or ‘changing gear’, a behavioural prosthesis for a movement disorder. An autistic child may also engage in spinning and twirling as a form of choreography or ‘dance’ that is an enjoyment of freedom of movement and being able to control your body.

In summary, the mannerism have both a message and a purpose and it is important that we ‘read’ the autistic child or adults body language to enhance their ability to communicate their thoughts, feelings and experiences.

References

Grandin, T. and Scariano, M. (1986). Emergence: Labelled Autistic. Novato, California: Arena Press.

The movement profile associated with autism​

The movement profile associated with autism

As much as autistic children have a different way of learning, they can also have a different way of moving. When walking or running, the child’s coordination can be immature with a gait that lacks fluency and efficiency. On careful observation, there can be a lack of synchrony in the movement of the arms and legs, especially when the person is running. Parents often report that their autistic child needed considerable guidance in learning activities that required manual dexterity such as tying shoelaces, dressing, and using eating utensils. Teachers may notice problems with fine motor skills, such as the ability to write and use scissors. Activities that require coordination and balance can also be affected, such as learning to ride a bicycle, skate or use a scooter. The overall appearance can be of someone who is clumsy.

The movement difficulties associated with autism have been explored by recent research studies with one in three autistic children having significant movement difficulties (Licari et al 2020). A study of 9–12-year-old autistic children found that their performance on motor tasks was at a similar level to children half their age, with difficulty coordinating movements that involve both sides of the body or both arms and legs, as though each body segment acted independently (Staples and Reid 2010). Gait can be affected in terms of a stiffer gate, unusual fluidity of walking, trunk and postural abnormalities and marked loss of smoothness (Nobile et al 2011) There can be an association with bradykinetic motor behaviour (slowness of movement), rigid motor behaviour and hypokinetic behaviour (Mostert-Kerckhoffs et al 2020). A recent systematic review of research on the movement profile associated with autism confirmed an impairment in Fundamental Movement Skills, especially balance, object control and locomotor skills that emerge early in life and persist to the adult years (Gandotra et al 2020)

The movement and coordination problems can be obvious to the physical education teacher and other children during PE classes and sports, and in playground games that require ball skills. An autistic child can be immature in the development of the ability to catch, throw and kick a ball. When catching a ball with two hands, the arm movements are often poorly coordinated and affected by problems with timing, i.e., the hands close in the correct position, but a fraction of a second too late. The child has taken too long to think and plan what to do.

One of the consequences of not being successful or popular at ball games is the exclusion of the child from some of the social games in the playground. Such children may choose to actively avoid these activities, knowing they are not as able as their peers. However, when they bravely attempt to join in the activity, they can be deliberately excluded by other children due to being perceived as a liability, not an asset, to the team. Thus, autistic children are less able to improve ball skills by practising with their peers.

From an early age, parents need to provide tuition and practice in ball skills, not in order that their child becomes an exceptional sportsperson, but to ensure that he or she has the basic competence to be included in the popular ball games of peers. However, it is interesting that some autistic children have a greater coordination and fluency of movement when swimming, develop remarkable agility when using the trampoline, acquire coordination through practice in solitary sports that can become a special interest, such as golf, and enjoy recreational activities such as horse riding, rowing and cycling. This can be to a level in advance of peers.

The mental planning and coordination of movement

A person is described as having apraxia when there are problems with the conceptualization and planning of movement, so that the action is less proficient and coordinated than one would expect. Autistic children have problems with the mental preparation and planning of movement with relatively intact motor pathways. Poorly planned movement and a slow mental preparation time may be a more precise description than simply being clumsy.

Ben describes the experience of having a delay or feeling of disengagement between thought and action:

I have always felt a disconnection between my body and my brain. Sometimes it’s as if I don’t have a body. My body has failed me. I fall down when I try to turn. I have problems seeing. I can’t focus. I can’t make my hands move the way I want them to. (La Salle 2003 p.47)

There may also be problems with proprioception, that is the integration of information about the position and movement of the body in space and the ability to maintain posture and balance. These are skills that are often used in the climbing and adventure games of children. There can be a tendency to fall off climbing apparatus and a risk of falling and injury when climbing a tree.

When examining general movement abilities of autistic children, there can be signs of ataxia; that is, less orderly muscular coordination and an abnormal pattern of movement. This can include movements being performed with abnormal force, rhythm and accuracy, and an unsteady gait. Observations of walking and running, climbing stairs, jumping, and touching a target (the finger to nose test) of autistic children indicate signs of ataxia.

One of the movement disturbances associated with autism is lax joints, such as Ehlers-Danlos syndromes. We do not know if this is a structural abnormality or due to low muscle tone, but the autobiography of David Miedzianik describes how:

At infant school I can seem to remember playing a lot of games and them learning us to write. They used to tell me off a lot for holding my pen wrong at infant and primary school.  I still don’t hold my pen very good to this day, so my handwriting has never been good. I think a lot of the reason why I hold my pen badly is that the joints of my fingertips are double jointed, and I can bend my fingers right back. (Miedzianik 1986, p.4)

Should problems occur from lax joints or immature or unusual grasp, then the child may be referred to an occupational therapist or physiotherapist for assessment and remedial activities. This should be a priority with a young child, since so much schoolwork requires the use of a pencil or pen.

Handwriting

Teachers and parents can become quite concerned about difficulties an autistic child may have with handwriting. The individual letters can be poorly formed and larger than would be expected for a child of that age. The technical term is macrographia. The child can take too long to complete each letter, causing delay in completing written tasks. While the rest of the class have written several sentences, the autistic child is still deliberating over the first sentence, trying to write legibly, and becoming increasingly frustrated or embarrassed about his or her inability to write neatly and consistently.

Sometimes the word, written in pencil, has been frequently rubbed out as the child considers the letters are not perfect, an exact copy of the printed text in the book. An activity in class may be refused because of an aversion to the requirement to write, not necessarily an aversion to the topic. Teachers may become frustrated by the illegibility of the handwriting but need to remember that this is an expression of a movement disorder, not necessarily a lack of commitment to the work.

Some autistic children can become fascinated by handwriting and develop a special interest in calligraphy. The problem here is that the child takes too long to complete a written assignment in class. Each letter may be perfect, but the child has become more absorbed in the formation of the letters than the content of the sentence.

When an autistic child has a problem with handwriting, there are several options. Remedial exercises to improve motor coordination – basically, lots of practice – can improve the fine motor skills needed to write legibly, but such activities can be extremely boring and resisted. An occupational therapist can suggest modifications to improve handwriting skills, such as a slightly slanted writing surface and a pen that is easier to grasp. A scribe can be used in class to write for the child. However, we suggest to teachers and parents that handwriting is becoming an obsolete skill in the twenty first century: modern technology can come to the rescue in terms of typing, not handwriting.

The young autistic child should be encouraged to learn to type and use a keyboard, computer and printer in the classroom. While basic writing skills are still needed, as the current generation of children become adults, they will be able to talk to a word processing device which will record and print speech. Few people today write someone a handwritten letter; communication is predominantly by typed e-mail. High school and university exams can be completed by typing answers to questions, which is a more efficient means of expressing knowledge and more easily read by examiners. Thus, teachers and parents should not be overly concerned about poor handwriting skills; rather, ensure that the child learns to type. When this option is not available, some children may need to be allowed extra time to complete tasks and exams.

Excellence in movement abilities

While we know that autism can be associated with impaired movement abilities, we have known many autistic children who have achieved abilities in movement skills that have been exceptional and contributed towards winning national and international championships. The movement disturbance does not appear to affect some sporting activities such as surfing, using the trampoline, playing golf and horse riding. These are activities that can be practised in solitude. Because of relative success in these activities, the autistic child can develop a special interest in the activity and with extensive practice and single-minded determination, achieve a level of proficiency that reaches a very high standard.

There can be ability with endurance sports such as marathon running. Once the running movement has become efficient, the autistic adolescent or adult can be remarkably tolerant of discomfort and able to just keep running. Some sports such as fencing can be enjoyed as the participants wear a mask (no problems with eye contact with the opponent) and there are set movements and responses to learn. Martial arts can also be appealing, especially if there is a slow-motion approach to initially learning defensive and offensive actions. The history and culture of martial arts can also be an intellectual interest for the autistic child. The indoor game of snooker is not a sport associated with motor agility, but autistic adolescents can have a natural understanding of the geometry of the moving balls and the pockets on a snooker table.

In summary, autism is associated with a range of movement disorders that will affect the expression of academic abilities in the classroom and social play in the playground. However, some autistic children have the potential to participate and enjoy a variety of solitary sports.

References

 Gandotra et al (2020) Research in ASD 78, 101632

 LaSalle, B. (2003) Finding Ben: A mother’s journey through the maze of Asperger’s. New York: Contemporary Books.

Licari et al (2020) Autism Research 13, 298-306

Miedzianik, D. (1986) My Autobiography. Child Development Research Unit, University of Nottingham, Nottingham, United Kingdom.

Mostert-Kerckhoffs et al (2020) Journal of Autism and Developmental Disorders 50, 415-428

Nobile et al (2011) Autism 15, 263-283

Staples and Reid (2010) Journal of Autism and Developmental Disorders 40, 209-217

Why do autistic adults become depressed? Part 1

Why do autistic adults become depressed? Part 1

Autistic adults appear especially vulnerable to feeling depressed, with about one in three adolescents and two out of three autistic adults having experienced at least one episode of severe depression in their life. More adults than adolescents may experience clinical depression because the reasons for depression in autistic adults may intensify during the adult years. The following descriptions about why autistic adults can become depressed are also relevant for adolescents. This is the first in a two-part series on why autistic adolescents and adults become depressed.

The reasons autistic adults become depressed

Feelings of social isolation and loneliness

Autistic adults have the desire for friendship, connection, and social approval, but often struggle to easily achieve these outcomes. The reasons for this are twofold. Firstly, autistic people are not easily read or understood by neurotypicals (nonautistic people) which can cause a sense of disconnection and wish to avoid interaction for both parties. Secondly, because the neurology of an autistic person is not wired innately to assist them to easily understand people and how to navigate social interactions. This double bind has been called the “double-empathy problem” of autism (c.f. Mitchell, Sheppard & Cassidy, 2021). The result can be extreme feelings of social isolation and loneliness: as described by Debbie, an autistic woman, ‘the heartache of having unmet needs.’ The compensatory strategy of analysing social situations and social performance can be exhausting and significantly contribute to feeling depressed.

The long-term consequences on self-esteem of feeling rejected and not respected or valued by peers

Autistic adults may see other people as being ‘toxic’ to his or her mental health because of past experiences of bullying and rejection. These experiences have been described as giving intense physical and emotional pain. It is little wonder that many autistic adults choose solitude rather than company. However, as one of our clients with autism said, ‘I would rather be alone, but I cannot stand the loneliness.’ Most autistic adults have experienced bullying, rejection and humiliation, and without a well-defined and robust self-identity, cannot mentally counter what the bully says or cope with the social rejection and humiliation.

Many typical teenagers value specific qualities in their peers, such as the ability to make people laugh through quick wit, risk taking, being socially skilled, sporting ability and being perceived as ‘cool’. Being popular is equated to self-worth. The qualities that an autistic adult bring to a friendship usually include loyalty, compassion, knowledge and open-mindedness, which may not be valued by typical teenagers. It is easy for the autistic adult to believe that their friendship qualities are inferior to their peers, and that perhaps, therefore, they are not as valuable as other people. This may result in feelings of low self-esteem which contributes to feeling depressed.

The mental exhaustion from trying to succeed socially

Despite the lack of the innate hardwiring for easily socializing, many autistic adults utilize their intellect to achieve social inclusion. Unfortunately, the psychological cost is high. The mental effort of intellectually analyzing every interaction to know what to do and say is exhausting. As a Buddhist monk with Autistic adults said, ‘For every hour I spend socializing, I need an hour of solitude to recharge my energy levels.’ Energy depletion is a major cause of depression.

Internalizing and believing the peer criticisms and torments

Frequent bullying and humiliation by peers can lead an autistic adult to believe that they really are defective in the ways described by the predators of the school and workplace. As Faye, an autistic woman and public speaker said, ‘If you are told each and every day by your peers, your teachers and your family that you are stupid, you learn pretty quickly that you are stupid.’ This can lead to beliefs about the self that are judgmental and critical, such as ‘I must be stupid,’ ‘I am defective,’ ‘There is something undeniably wrong with me,’ which can both make the person depressed, and keep them depressed. In contrast, typical adolescents, when criticized by peers, will have several close friends who can quickly and easily repair their emotions and provide reassurance and evidence that the negative suggestions are not true.

A thinking style that focuses on errors and what could go wrong

Autistic adults are very good at recognizing patterns and spotting errors, which is ideal when designing a bridge or analysing an MRI scan but not so great when thinking about oneself or the future. Being able to focus on errors or anomalies is a very important employment skill; however, when the person always uses this style of thinking when contemplating themselves or their future, depression may be the outcome. An example of this style of thinking is: ‘I never get things right, I am hopeless, and I always will be.’ There can be a relative lack of optimism; as the autistic adult achieves greater intellectual maturity, there may be increased insight into being different, with the resulting self-perception of being irreparably defective and socially stupid.

There can also be high expectations of social competence and an aversion for social errors and self-criticism. As Caroline stated, ‘The worst thing about disappointing yourself is that you never forgive yourself fully,’ or Ruth’s comment that, ‘When something happens, such as not having your homework done, your inner voice blames and shames you for failing.’

Belief that change is aversive and unattainable

Autistic adults often have great difficulty adjusting to change or the unanticipated, and usually actively seek and enjoy and feel relaxed when there is consistency and predictability in their daily lives. This can lead to a mindset that change is unpleasant and to be avoided. Another characteristic of autistic adults is cognitive inflexibility, which is not being able to conceptualize an alternative: in other words, a ‘one track mind’. Thus, as described by Joshua, ‘I may not want to change, know how to change, or believe that change is even possible.’ This can lead to the belief that feeling depressed will continue and be consistent throughout my life.

Not being able to cope with specific sensory experiences

An extremely difficult part of autism for many people can be the way they experience their sensory world, for example smells, sounds, textures and light intensity. Specific sensory experiences that are perceived by others as not particularly intense or aversive can be perceived by autistic adult as being unbearably intense and painful. If the person does not have coping or escape strategies for avoiding or tolerating these intense sensory experiences, he or she may begin to feel very hopeless and depressed about how they are ever going to cope with this aspect of their life. The anxiety they feel while both anticipating and being overwhelmed by aversive sensory experiences can be paralysing, and paradoxically, can increase their sensory sensitivity.

Being diagnosed with autism

Autism has historically been perceived in our society as being a disability, which it can be, or a mental illness, which it is not. However, when we confirm the diagnosis of autism in our diagnostic clinic the most common reaction from an adult who has sought the diagnosis is tears of relief. Finally, there is an explanation for the differences that the person has been observing and analysing for a lifetime. Now the explanation can be that ‘My brain is wired differently’ instead of, ‘I have a defective personality,’

Unfortunately, for some adolescents and young adults there is a rejection of the diagnosis due to genuine concern as to how it might be interpreted by society and especially by peers. There is understandably a sensitivity to the potential for being labelled in a pejorative way, which could then be perceived as official confirmation of being defective. Adolescents can also be acutely aware that peer ignorance of the nature of autism may lead to subsequent rejection. The diagnosis and diagnostic label can become ammunition for verbal and physical abuse.

Family history of depression

We have known for some time that there is a higher-than-expected incidence of mood disorders, including depression, in the family members of an autistic person. Recent research has suggested that 44 per cent of mothers and 28 per cent of fathers of an autistic child have reported having had a clinically diagnosed depression. In more than 50 per cent of cases, the diagnosis occurred before the birth of the child. If a parent has episodic depression, then their son or daughter may have a higher genetic risk of experiencing depression themselves.

A ‘sixth sense’ emotional sensitivity

One of the diagnostic characteristics of autistic adults is a difficulty with nonverbal communication: that is, the ability to read facial expressions, body language and tone of voice. However, clinical experience and autobiographies describe a ‘sixth sense’ ability to perceive and absorb negative emotions in others; the person is over-sensitive to another person’s distress, despair, anxiety or anger, and this can occur without their actually seeing or hearing the other person. An example is a teenager in bed one morning, facing the bedroom wall with eyes closed. His mother tapped the door and silently walked into the room to open the curtains. He immediately said, “What’s wrong Mum?” which was an accurate appraisal of her emotional state of high anxiety, but without engaging conventional nonverbal cues to provide that information.

The following quotes describe the experience:

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. 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.

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 sensitivity to ‘negative vibes’ can feel like being an emotional ‘sponge’. There is a difficulty creating a sense of detachment from the negative feelings of others which seem to be contageous. Another person’s feelings of sadness can become ‘infectious’ to the autistic person, who is not able to determine ownership of the original depressive thoughts. It is interesting that one of the reasons for self-imposed social isolation for an autistic adult can be to provide protection against negative feelings in others that are detrimental to one’s own mental health.

How do I find out more?

We have written a self-help book for depressed autistic adolescents and adults with the intention of saving lives. The above information is taken directly from one of the book chapters. Subsequent chapters outline a 10-Step Programme for recovery from depression. The programme is best undertaken with a Mentor who could be a health professional such as a counsellor or clinical psychologist, or a parent, partner or family friend.

Exploring Depression, and Beating the Blues: A CBT Self-Help Guide to Understanding and Coping with Depression in Asperger’s Syndrome [ASD-Level 1] by Tony Attwood and Michelle Garnett, published by Jessica Kingsley Publishers, Web: www.jkp.com

If you are a Professional who works with adults, we highly recommend attending our upcoming event which may be attended live in Sydney or via webcast:

If you are an autistic adult or supporting an autistic adult, we can highly recommend our one-day course:

References

Mitchell, P., Sheppard, E. & Cassidy, S. (2021). Autism and the double-empathy problem: Implications for development and mental health. British Journal of Developmental Psychology, 39, 1-18. DOI: 10.1111/bjdp.12350

The emotion repair toolbox

The emotion repair toolbox

Autistic children and adults usually have a limited range of emotion repair mechanisms and are less likely to use the more effective strategies used by typical children and adults, such as putting the event in perspective, reappraising the situation, considering alternative responses, acceptance, or being able to disclose feelings to another person, thus seeking, and benefiting from compassion, validation and affection from a family member or friend. However, autistic children and adults can learn new emotion repair strategies, and these can be conceptualised as acquiring more emotion repair tools.

From a very early age, children will know a toolbox contains a variety of different tools to repair a machine or fix a household problem. The strategy is to identify different types of ‘tools’ to fix the problems associated with negative emotions, especially anxiety. The emotion repair for autistic children and adults can be conceptualised as a problem with ‘energy management’, namely, an excessive amount of emotional energy and difficulty controlling and releasing the energy constructively. Autistic individuals appear less able to slowly release emotional energy by relaxation and reflection, and usually prefer to fix or release the feeling by an energetic, potentially destructive action or thought and emotion blocking action.

The range of tools can be divided into those that quickly and constructively release, or slowly reduce, emotional energy, and those that improve thinking or reduce sensory responsiveness, as well as taking out of the toolbox those tools that can make the emotions or consequences worse such as self-harm.

Physical tools

A hammer can represent tools or actions that physically release emotional energy through a constructive and acceptable activity. For young autistic children, this can include bouncing on the trampoline, going on a swing or using playground equipment. Although these facilities may be available at a school, they may not be used by an autistic child due to the number of children using the same equipment, and the autistic child’s need to achieve solitude and avoid social interactions during break times. They may have special dispensation to use such equipment when the other children are in class. At home, it is easier to encourage such physical activities as an emotional repair mechanism.

For older children and adolescents, going for a run, or dancing alone in a bedroom may be used to ‘let off steam’ or release supressed or increasing emotional energy. An autistic adult described how, ‘running keeps anxiety away.’ Other activities may include cycling, swimming or playing the drums, tennis practice or horse riding, and going to a fitness centre.

Unfortunately, autistic children and adults often feel, and indeed may be, clumsy and poorly coordinated, and have often been teased in the past by peers for not being good at team sports and ball games. While research has confirmed that physical exercise decreases repetitive behaviour, aggression, inattentiveness and escape behaviours in autistic children (Lang et al., 2010), there may be limited motivation and low self-confidence with physical activities. A personal trainer may be able to assess the child or adult’s body type and personality and design a specific programme of realistic and achievable physical activities that can be completed in solitude, and do not involve activities in a social context where there is a risk of ridicule. We recognize that regular exercise is excellent for mental and physical health, but also to improve clarity of thought and problem-solving abilities. ‘Exercise will make you smarter’ is a concept we explain to autistic children and adults who often value and seek to demonstrate their intellectual ability.

Some autistic children and adults have identified that destruction is a physical tool that can be a very effective ‘quick fix’ to end unpleasant feelings of suppressed or increasing anxiety, depression and anger. At home, there are some household activities that provide a satisfying and constructive release of potentially destructive energy, without causing damage that may require expensive repairs.  For example, empty cans, water bottles or packaging can be crushed for recycling, or old clothes torn up to make rags. This ‘creative destruction’ might be the repair mechanism of first choice at home, and especially when returning home from school or work.

Relaxation tools

Typical children and adults usually know intuitively how to relax, and it is a state of mind that they will have often experienced. This may not be the case with an autistic person. Our extensive clinical experience has indicated that there is often a difficulty in achieving a state of relaxation, and confusion as to what to do when someone says, ‘Just relax.’

Relaxation tools help the person lower their heart rate and gradually release and reduce emotional energy. Perhaps a picture of a paintbrush or spirit level could be used to illustrate this category of tools for emotional repair. Relaxation tools or activities could include drawing, reading and especially listening to calming music to slowly unwind negative thoughts and fears. Routine chores or activities can result in a sense of accomplishment, satisfaction and relaxation when complete.

A characteristic of autism is find that solitude, in the sense of being alone rather than lonely, is a very effective means of relaxing. Being away from people, and from certain sensory experiences – perhaps retreating to a quiet, secluded sanctuary – is an effective way of reducing anxiety and stress, and achieving relaxation and emotional repair. The autistic person will need islands of tranquillity and solitude both at school or work and at home.  It may be possible for the autistic child or their parent to talk to a teacher about accessing somewhere secluded at school during break times or recess, for example, the library. Such solitude can be emotionally refreshing and a means of true and deep relaxation. A further source of relaxation can come from being in nature, walking or camping in a natural environment, with few social encounters and only natural sensory experiences and engaging with the wildlife.

Cue-controlled relaxation is also a useful emotion repair tool. The strategy is for the person to have an object, perhaps hidden in his or her pocket, that, through association, symbolizes and engenders feelings of being calm and relaxed. For example, an autistic child may feel relaxed when on holiday and going fishing: thus, a fishing float in a pocket can be retrieved and looked at to recreate the feelings, images and sensations of relaxation and enjoyment when fishing.

Meditation tools

In Western cultures, there is a growing awareness and appreciation of the value of activities such as yoga in encouraging a general sense of well-being and providing an antidote to anxiety. We now have yoga activities specifically developed for autistic children to use at school and home (Betts & Betts, 2006; Bolls & Sewell, 2013; Mitchell 2014; Hardy, 2015), and some teachers are now using classroom and individual meditation activities to encourage relaxation and enhanced attention for the whole class. Mindfulness is also being used to regulate attention toward the present moment, to let an emotion pass and encouraging an attitude of openness and acceptance using imagery, meditation and yoga (De Bruin et al., 2015).

A meta-analysis of 123 studies of the effects of meditation of the brain found that eight regions of the brain were consistently enhanced in meditators (Fox et al. 2014). All eight brain areas are associated with autism. Thus, meditation can be perceived as a form of therapy for autism.

Social tools

This tool is to be with someone, or an animal, that can help repair the mood. These tools could be represented by a sponge to soak up the emotional distress. The social experience will need to be enjoyable and without the stress that can sometimes be associated with socialising, especially when the interaction involves more than one other person. For an autistic person, two are company, three a crowd. There are social experiences that reduce anxiety, for example, being with someone who has the ability to be like an emotional ‘sponge’, soaking up worries and anxious thoughts; a particular family member, teacher or colleague who accurately ‘reads’ the autistic person’s emotional state and intuitively knows what to say or do to be reassuring and calming. Another social tool, in the broadest sense, is spending time with pets that are non-judgemental listeners and more forgiving and accepting than humans. Sometimes, even just looking at photographs of favourite people and pets on a mobile phone or iPad can significantly decrease anxiety, despair, and agitation.  Someone emotionally close to an autistic child or adolescent could make an audio recording of soothing comments on their mobile phone to help them cope with extremely anxious or distressing moments.

Helping others

Another tool is the act of helping someone and being needed – an altruistic act. Autistic individuals can change their mood from self-criticism and pessimism to a feeling of self-worth and resilience when they experience opportunities to help and be of value to others. This can include activities such as helping someone who has difficulties in an area of the autistic person’s talents or expertise: for example, helping a teacher or sibling fix a problem with a computer. Being needed and appreciated is a significant emotional repair mechanism for all of us, including autistic individuals.

Internet activities

Internet support groups and conversations between subscribers or multi-player games participants can be an effective emotional repair mechanism. Autistic individuals often have greater eloquence and insight disclosing their inner thoughts and feelings by typing rather than talking; they don’t need skills with eye contact, or to be able to read a face or understand changes in vocal tone or body language when engaged in a ‘conversation’ on the Internet. The chat line or Internet conversation can include other autistic people who have genuine empathy and may offer constructive suggestions to repair a mood or situation.

Thinking tools

Another type of implement, such as a screwdriver or wrench, or a repair manual, can be used to represent a category of tools that can be used to change thinking or provide knowledge. The autistic person is encouraged to use his or her intellectual abilities to control feelings such as anxiety by using a variety of techniques such as self-talk or an internal dialogue such as, ‘I can control my feelings’, ‘I can stay calm’, or, ‘be a mirror, not a magnifying glass’. By using words and thoughts that are reassuring and encourage self-confidence and emotional resilience, the autistic person is encouraged to create a ‘force field,’ ‘suit of armour’ or ‘umbrella’ for emotional protection.

A thinking strategy is the creation of ‘antidotes to poisonous thoughts. The procedure is to think of a comment that neutralizes or is an antidote to negative (poisonous) thoughts. For example, the negative thought, ‘I can’t do it’ (poisonous thought) can be neutralized by the antidote, ‘If I stay calm, I will be quicker at finding the solution’; or ‘I’m a loser’ can be neutralized by the antidote, ‘but I’m a winner at Minecraft.’ A list is created of the person’s negative or poisonous thoughts, and the parent or teacher helps create a personalized antidote to each thought. Cognitive Behaviour Therapy (CBT) focuses on discouraging maladaptive thinking and encouraging adaptive thinking and CBT has been adapted to accommodate the characteristics of autism (Scarpa, Williams White and Attwood 2013). The maladaptive thinking associated with autism is a tendency to catastrophise (meltdown) or supress (engage in a special interest) and CBT encourages adaptive thinking such as self-soothing, perceiving alternative perspectives and the disclosure of feelings to others.

Academic or intellectual achievement

A tool that can be used with autistic children and adults to reduce anxiety and improve mood and resilience, is the achievement of academic success or acquiring knowledge on the Internet. When an autistic child is anxious or agitated in class, the teacher may instruct the child to complete an academic activity that he or she enjoys, and for which the child has a natural talent, such as solving mathematic problems, spelling, playing an instrument or drawing. This is in contrast to typical children, who would probably try to avoid academic tasks when stressed. Adults may reduce stress and improve their mood and self-esteem by seeking knowledge via the Internet or reading.

Additional tools: Sensory sensitivity, nutrition and sleep

The exploration and analysis of the causes of anxiety may include sensory sensitivity (Green & Ben-Sasson 2010). Experience has indicated that repeated exposure to the sensory experience does not easily lead to habituation and a reduction in sensitivity. Sensory sensitivity appears to be a life-long characteristic of autism, with adults creating life circumstances to avoid some sensory experiences or, with maturity, learning to consciously endure and tolerate such experiences, even though they may be just as aversive as they were during childhood. An occupational therapist may be able to provide advice on strategies to reduce or tolerate sensory sensitivity. For example, auditory sensitivity can be for both sounds of a particular pitch or volume, or general noise levels, and can include difficulty filtering out background sounds to focus on a teacher’s or line manager’s voice. Anxiety can occur due to the possibility of not being able to hear important instructions. Specific sounds can be avoided, or encountered less frequently, such as someone shouting; or being prepared and supported for particular events, such as fire alarm testing. A Sensory Integration Programme created and conducted by an occupational therapist may reduce sensory sensitivity.

Clinical experience and advice from mature autistic adults suggest that physical and emotional well-being can be improved by reducing the amount of junk food consumed and having a good diet with nutritious food (Attwood, et al., 2014). While junk food is popular, well-advertised and easy to acquire, and can provide some comfort in the short term, the problems, which range from unstable mood to weight gain, outweigh the perceived benefits. Healthy food does contribute to a healthy mind.

We recognize that autism is associated with a range of sleep disorders (Chen et al 2021; Kotagal, & Broomall, 2012;). Sleep has many functions, one of which is to refresh mind and body. The sleep cycle associated with autism can be unusual, for example, taking some time to actually fall asleep (especially if worried about events of the day, or fearfully anticipating the next day), with a tendency for there to be a disturbance of the depth and quality of sleep subsequently. While attention to, and modification of, sleep routines, and medications such as Melatonin, can all help establish a reasonable sleep cycle, if problems persist, a referral to a sleep clinic may be needed. Having restful and deep, uninterrupted sleep can lead to an improvement in the ability to manage emotions such as anxiety.

Summary for the emotional toolbox

We recognise that autistic children and adults will have difficulties managing and expressing feelings which become increasingly significant throughout childhood, and especially in the adult years. Autistic adults often rate problems with anxiety and depression as having a far greater effect on their daily lives than making and keeping friends and getting and keeping a job (Attwood, et al., 2014). Thus, we need to recognize the importance of emotion repair at home, school and at work.

References

Attwood, T. Evans C. & Lesko A. (2014). Been There. Done That. Try This!: An Aspie’s Guide to Life on Earth. London: Jessica Kingsley Publishers.

Betts, D. E., & Betts, S. W. (2006). Yoga for children with autism spectrum disorders: a step-by-step guide for parents and caregivers. London, Jessica Kingsley Publishers.

Bolls, U. D., & Sewell, R. (2013). Meditation for Aspies: Everyday Techniques to Help People with Asperger Syndrome Take Control and Improve Their Lives. London: Jessica Kingsley Publishers.

Chen et al (2021) Sleep problems in children with Autism Spectrum Disorder: A multicenter survey. BMC Psychiatry 21:406

De Bruin, E. I., Blom, R., Smit, F. M., Van Steensel, F. J., & Bögels, S. M. (2015). MYmind: Mindfulness training for Youngsters with autism spectrum disorders and their parents. Autism, 19(8), 906-914.

Fox et al 2014, Neuroscience & Biobehavioural Review, (Apr), 20140409.

Green, S. A., & Ben-Sasson, A. (2010). Anxiety disorders and sensory over-responsivity in children with autism spectrum disorders: is there a causal relationship?. Journal of Autism & Developmental Disorders, 40(12), 1495-1504.

Hardy, S. T. (2014). Asanas for Autism and Special Needs: Yoga to Help Children with their Emotions, Self-Regulation and Body Awareness. London.  Jessica Kingsley Publishers.

Kotagal, S., & Broomall, E. (2012). Sleep in children with autism spectrum disorder. Pediatric Neurology, 47(4), 242-251.

Lang, R., Regester, A., Lauderdale, S., Ashbaugh, K., & Haring, A. (2010). Treatment of anxiety in autism spectrum disorders using cognitive behaviour therapy: A systematic review. Developmental Neurorehabilitation, 13(1), 53-63.

Mitchell, C. (2013). Mindful Living with Asperger’s Syndrome: Everyday Mindfulness Practices to Help You Tune in to the Present Moment. London. Jessica Kingsley Publishers.

Scarpa, A., Williams White, S. and Attwood T. (Eds) (2013) CBT for Children and Adolescents with High Functioning Autism Spectrum Disorders. New York, The Guilford Press