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Explaining autism to a child or adolescent

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Explaining autism to a child or adolescent

The value of an explanation

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

When and how do you explain the diagnosis?

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

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

The Attributes Activity

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

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

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

Exceptional at remembering things that other people have forgotten

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

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

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

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

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

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

Who else needs to know?

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

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

References

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

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

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

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

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

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

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

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

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

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

Books and resources

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

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

Books for primary school children

Bulhak-Paterson (2015) I am an Aspie Girl

Hoopmann (2021) All Cats are on the Autism Spectrum

Hoopmann (2013) Inside Asperger’s Looking Out

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

 Books for high school children

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

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

Fiction

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

Books for parents

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

What is PDA?

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What is PDA?

Introduction

The term PDA stands for Pathological Demand Syndrome and was first coined by Elizabeth Newson, a developmental psychologist, in the 1980s in the UK. She described PDA as being extremely high anxiety driven by the need to control and avoid other people’s demands and expectations. The National Autistic Society England describes PDA as being an atypical type of autism. The term does not appear in the international textbooks that guide diagnosis. Nevertheless, there has been growing research and clinical interest in PDA as many people in the Western world recognise the profile in their children and clients.

The behavioural features of PDA have recently been described in a research study by O’Nions and colleagues (2016) to include:

non-compliance to even the most innocuous requests and insistence that others comply with their requests
strategic avoidance of demands
behaviours that suggest awareness of what might cause a diversion
obsessive need for control, including domineering behaviour
a tendency to perceive themselves as having adult status
seeming lack of responsibility or sensitivity to other people’s distress
poor social awareness
sudden mood changes
engagement and enjoyment in fantasy role-play
extreme behaviour, for e.g., intense reactions to losing games, meltdowns

Children and teens with PDA often show positive personality qualities including having charisma, a good sense of humour and are often considered likeable, chatty and fun to be with when not asked to comply with a request.

Superficially PDA appears as defiance and obstinance. A recent study conducted by Stewart and colleagues in 2020 found that anxiety and intolerance of uncertainty was at the base of the child’s attempt to increase predictability and agency in so many situations.

Is PDA a part of Autism?

PDA is considered to be an atypical subtype of autism. It differs from typical autism in that the person shows a superficial sociability and capacity to read situations to the extent that they can manipulate them to avoid complying with demands. These children usually highly value friendship, but lack self-awareness and awareness of others, so often fail to achieve deep connections with peers. They typically have very high levels of sensory sensitivity, a different perception of time and space, and a relative lack of anchoring themselves in social experience.

How do Children with PDA Cope at School?

A survey conducted by the PDA society in the United Kingdom in 2018 found that 70% of children with PDA did not thrive in the school environment or were home-schooled. O’Nions and colleagues found in 2014 that 88% refused to attend school at some point. Children and teenagers with PDA are at great risk for losing their educational placement through exclusion due to schools being unable to create an environment that the child can tolerate to be able to cope with the learning process.

Apparent strengths in their language and communication profile means it is easy for teachers to miss making the necessary accommodations for them and to forget to look at what is driving the behaviour. The child or teenager is often caught in a maladaptive coping strategy of avoidance or arguments, and the school environment often responds with punishment, and each bring out the worst in each other.

Unfortunately, clinical experience and research suggests that the strategies frequently used for autism are often ineffective and counter-productive for a child with a PDA profile.

Where to from here?

During our over 80 years of combined experience in autism we have often worked with children and teens with the PDA profile and their families. We have developed a three-hour presentation to assist families, teachers and professionals to recognise and understand PDA, and to give guidance on the best approaches we know so far. Here is the link:

https://attwoodandgarnettevents.com/product/live-webcast-pda-and-autism/

There are also a number of great resources available, and we highly recommend these:

Both the websites of the UK and Australia/NZ Chapters of the PDA Society:

http://www.pdaanz.com/
https://www.pdasociety.org.uk/

Dr Ross Greene, American Psychologist has developed a model of care called Collaborative & Proactive Solutions (CPS) which is based on research and practice and based on collaboration and compassion. He does not use the term PDA, but instead talks about kids for whom challenging behaviour occurs when the demands and expectations being placed on them exceed their capacity to respond adaptively. His website has some great resources:

https://livesinthebalance.org/

References

O’Nions, E, · Gould, J, · Christie, P, · Gillberg, C. Viding E, & · Happé, F. (2016) Identifying features of ‘pathological demand avoidance’ using the Diagnostic Interview for Social and Communication Disorders (DISCO), Eur Child Adolesc Psychiatry 25:407–419 DOI 10.1007/s00787-015-0740-2

O’Nions E, Christie P, Gould J, Viding E, Happé F (2014) Development of the ‘Extreme Demand Avoidance Questionnaire’ (EDAQ): preliminary observations on a trait measure for pathological demand avoidance. J Child Psychol Psychiatry 55:758–768

Stewart, L, Grahame E, Honey V, & Freeston, M. (2000). Intolerance of uncertainty and anxiety as explanatory frameworks for extreme demand avoidance in children and adolescents, Child and Adolescent Mental Health 25 (2), 59-67. https://doi.org/10.1111/camh.12336

The learning profile associated with autism

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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

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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​

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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

The emotion repair toolbox

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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

Adolescent autistic friendships

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Adolescent autistic friendships

Typical adolescent friendships

Typical children go through four stages of friendship from pre-school to adolescence, with the fourth stage becoming apparent from around the age of 13. During the previous stage of friendship (9 to 13 years) there is usually a small core of close, same gender friends, but in stage four the number of friends, gender, and quality of friendship changes. There can be different friends for different needs, such as emotional comfort, humour and entertainment, or practical advice for schoolwork. A friend is defined in stage four as someone who ‘accepts me for who I am’ or ‘we think the same way about things.’ A friend provides a sense of personal identity, self-esteem, connectedness, and resonance with one’s own personality. There are less concrete and more abstract definitions of friendship, with what may be described as ‘autonomous inter-dependence’. The friendships are less possessive and exclusive, and conflict is resolved with self-reflection, compromise, and negotiation.

During the teenage years, friendships are often based on shared interests, such as academic achievements, mutual participation in sports and recreational activities, and passion for causes, such as climate change. There is a greater depth and breadth of self-disclosure, empathy, and sharing feelings and secrets. The teenager increasingly spends more time with friends than parents, and allegiance can be to friends and their value systems rather than to family. Peer group acceptance may be perceived as more important than the approval of parents.

When conflicts occur, friends will now use more effective repair mechanisms. Arguments can be less ‘heated’, with reduced confrontation and more disengagement, admission of mistakes and recognition that it is not simply a matter of winner and loser. A satisfactory resolution of interpersonal conflict between friends can strengthen the relationship. The friend is forgiven, and the conflict is put in perspective. These relationship qualities played out in typical adolescent friendships are the foundation of interpersonal skills for adult relationships.

Autistic friendships

In typical adolescents, the acquisition of friendship skills is based on an innate and evolving ability to make and keep friends that develops throughout childhood, in association with progressive changes in social reasoning and abilities modified through positive friendship experiences. Unfortunately, autistic children and adolescents are not as able to rely on intuitive abilities in social settings and must rely more on their general cognitive abilities to process social information. They often have had peer interactions which have been confusing, if not aversive. Due to relying on cognitive rather than intuitive abilities, autistic adolescents often have difficulty in friendship situations that have not been rehearsed or prepared for. They also have difficulty reading and following covert social rules and conventions. They may be criticized by peers for making social errors, often being labelled a ‘social retard’. Autistic adolescents have probably not had many opportunities for a friendship mentor – peer or adult – to provide guidance and constructive, positive feedback.

Thus, autistic adolescents work twice as hard intellectually at school than their peers, as they are learning both the academic and the social curriculum. As explained by an autistic teenager, ‘It takes all my brain power to be a friend.’ At the end of the school day, the autistic teenager has usually had more than enough social interaction, and desperately needs to relax in solitude to intellectually process the day’s social experiences. As far as the autistic teenager is concerned, friendships end at the school gate. They may resist parents’ suggestions to contact friends or engage in extra-curricular activities, local sports, and artistic activities such as drama. Parents may need to accept that their teenage son or daughter does not have the energy or motivation to socialize any more. If parents arrange social experiences, it is imperative that the experiences are brief, structured, supervised, successful, and, most importantly, voluntary.

Even when autistic adolescents are included in the activities and conversations of their peers at school, there may be an awareness that they are not popular. This is illustrated by two comments from autistic adults describing their teenage years: ‘I wasn’t rejected, but I did not feel completely included’, and, ‘I was supported and tolerated, but not liked.’ A common lament is feeling that others do not want to be around them – that they are perceived as a nuisance. Autistic adolescents often blame themselves, or the fact that they are autistic, for their peer rejection, and become anxious to avoid inadvertently violating their peer social hierarchy and expectations. A lack of genuine social acceptance by peers will obviously adversely affect the development of self-esteem, self-identity, and perception of autism.

Autistic adolescents can be increasingly aware of being socially naïve and making social faux pas. The worry about social incompetence and conspicuous errors can lead to the development of a social phobia and increased social withdrawal. An autistic teenager said that ‘I live in a constant state of performance anxiety over day-to-day social encounters.’ Aversive social experiences with peers can lead to the assumption that everyone is against them, and to misperceiving, or not recognising, friendly intentions when they do occur. This may be a contributary factor to becoming a recluse at home, and not wanting to leave the safe sanctuary of their bedroom.

The social performance anxiety can be especially acute at the end of the day, and before falling asleep, when the autistic teenager reviews the social experiences of school. He or she may now be very aware of what other people may think, and this can be a significant cause of anxiety: ‘I probably made a fool of myself’; or depression: ‘I always make mistakes and always will.’ There can be a conscious retreat into solitude: as an autistic adolescent said, ‘I’d rather just be alone, but I can’t handle the loneliness.’

The autistic teenager typically has fewer friends, and meets with friends less often at school and for a shorter duration, compared to peers. They can express feelings of deep loneliness and melancholy. Being isolated and not having friends also makes the adolescent vulnerable to being teased and bullied. The ‘predators’ at high school target someone who is alone, vulnerable and less likely to be protected by peers. Having more friends can mean having fewer enemies, being protected, and having someone to repair or refute derogatory comments and restore a sense of trust.

Peer acceptance and friendships can also benefit the autistic teenager in terms of providing a second opinion regarding the motives and intentions of others, thus preventing that sense of paranoia. Friends can provide an effective emotional monitoring and repair mechanism, especially for emotions such as anxiety, anger, and depression. If a typical teenager is sad, close friends will cheer them up, or if angry, calm them down and prevent them from getting into trouble. Friends can also offer guidance on what is appropriate social behaviour, helping develop a positive self-image and greater self-confidence.

Typical adolescents can easily identify their friendship ‘family’, and achieve a sense of connection and belonging to a friendship group with shared interests and values. Autistic adolescents, on the other hand, often yearn for a sense of connection, but usually experience rejection from popular friendship groups. However, they may be accepted by marginalised teenage groups that engage in activities and interests that tend to cause concern for parents – exploration of alcohol and drug use, sexuality and eating disorders, for example. The friendship family ‘adopts’ the autistic teenager, who acquires a new intense interest and may accumulate knowledge from the Internet that is valued by the group.

When a friendship does occur, one of the difficulties for autistic adolescents is knowing how to maintain that friendship. They may struggle with the unspoken rules, such as how often to make contact using social media; what are appropriate topics of reciprocal conversations on mutual interests; what might be suitable empathic comments and gestures; and how should they be generous or tolerant about disagreements. Autistic teenagers can tend to be ‘black or white’ in their concept of friendship, such that when a friend makes a transgression of a friendship expectation or ‘rule’, the autistic teenager may coldly end the friendship rather than seek reconciliation. Sometimes, when the neurotypical friend ends the relationship, the autistic adolescent can experience considerable emotional distress, especially when not knowing exactly why the friendship ended; they may experience a deep sense of betrayal.

One of the characteristics of autism is alexithymia, that is, a difficulty communicating inner thoughts and feelings in a conversation. This reciprocal disclosure is one of the core components of adolescent friendships, especially for girls, but extremely difficult for autistic teenagers who can be perceived as ‘shallow. This combines with another difficulty associated with autism, that is knowing how to respond empathically to a friend’s disclosure, and thus they may be perceived by peers as emotionally ‘cold’.

Autistic friendships for girls

The challenges in developing friendships for autistic adolescents described in the previous section can be applicable to both autistic boys and girls. However, we are increasingly recognising how autistic girls may have a different way of adapting to their autism when they make friends. At some stage during the primary or elementary school years, an autistic girl will start to recognise she is different to her peers in terms of social abilities, interests, and sensory sensitivity. She may then develop compensatory and camouflaging strategies to make and keep friends.

The autistic girl may not understand or feel comfortable engaging in the complex friendship dynamics of other girls, which often include gossip, relational bullying, judgements and ‘white lies. In contrast, typical boys’ social interactions are much simpler, and the autistic girl may share the boys’ interests in sports, science, computer games, construction toys, logic and adventure. The autistic girl thus becomes a tomboy, a compensatory mechanism for autism which can continue into the adolescent years, as she does not share her gender peers’ interest in fashion, or romantic feelings towards popular male heroes.

Another strategy is to acquire social inclusion with female peers by observing peer social interactions, analysing their behaviour, seeking social rules and conventions, and imitating the gestures, speech, persona, and interests of socially successful girls. She creates a social ‘mask’ and becomes an expert mimic. As a teenage girl said, ‘Why go to all the effort of figuring out what normal is when you can just copy it?’

When acting with friends she is briefly ‘cured’ of autism, but there is only a surface sociability; her lack of real social identity, and constant acting of socialising with peers can be a source of performance anxiety, cognitive and emotional exhaustion, and ultimately depression. The characteristics of autism are supressed at high school, so her social difficulties are not noticed by teachers; however, the supressed stress is often released at home. She becomes a chameleon, or ‘Jekyll and Hyde’ character.

Camouflaging autism by being an accomplished actor who has ‘learned the script’ enables the girl to acquire social acceptance and inclusion by her peers. She mimics appropriate social gestures, facial expressions and female prosody. However, this in turn may delay the identification of two of the central characteristics of autism, namely deficits in both social and emotional reciprocity, and the appropriate use of non-verbal communication. As one teenage autistic girl said, ‘I have done such a great job at pretending to be normal that nobody really believes I have autism.’

An autistic teenage girl can be overly sensitive to conflict between her female friends and take on the role of peacemaker. In a friendship group there can be several contradictory opinions and egos, and an autistic adolescent will have difficulty processing several conversations and feel uncomfortable being watched by several peers. An autistic teenage girl may prefer single close friendships, but have difficulty determining who would be an appropriate choice for a friend.

When a one-on-one friendship does occur, there can be concerns about the degree of intensity of the girl’s engagement with just one person. She can be overly controlling and possessive, and the one female friend becomes the sole focus of her social life. This interpersonal dynamic may shorten the duration of the friendship, which is ultimately broken by the neurotypical friend. The friendship may also be broken by the autistic teenager, who has a rigid conceptualization of what a friend should do and say. There is a limited ability to understand an alternative perspective, and to manage disagreements and conflict with re-appraisal, compromise, and forgiveness. Thus, there may be a total rejection of the relationship without having considered any relationship repair mechanisms.

During earlier childhood, young autistic girls may observe, analyse and consequently adopt the conversations and interests of their peers – fashion such as pink, frilly clothes, toys such as Barbie dolls, and the current popular films and tv shows. As these interests and preferences of their peers evolve, during adolescence, there is a continued determination by girls to stay abreast of this ‘currency’ of female friendship. However, as adolescence progresses, there may be a recognition by young autistic females that they do not feel as though they are a genuine member of the friendship group. They are exhausted after socializing with their peers, and spend considerable time engaged in a social ‘autopsy’, analysing their social abilities and fearing that they will be discovered as a fake. Social invitations may diminish, and there is a growing realization that this strategy of acting and camouflaging may never really work; there is an increasing feeling of alienation from peers, and a sense of not being true to the real self. The ‘pendulum’ can then swing the other way, such that the girl begins to despise femininity and defy social and gender conventions. She may become determined to join marginalised peers who are less judgemental and more accepting of someone who is ‘eccentric’.

Resources and programmes on friendship

We would not anticipate that an autistic adolescent could quickly and easily acquire the friendship abilities of their peers. However, there are strategies and programmes that can be used by parents, teachers, and therapists to improve friendship experiences, abilities, and confidence.

An autistic friend

Friendship is often based on two people sharing the same interests, beliefs, and values. We have observed that sometimes the most enjoyable and long-lasting friendships for an autistic adolescent is with another autistic adolescent. They have found each other. This may have been by chance, both being conspicuously on the periphery of friendship groups, or by design or circumstances.

In high school, there may be the opportunity to join interest groups at lunchtime or after school, shared interest topics such as science-fiction films, Japanese anime and manga, science or mathematics projects, and robotics and computer programming may be just some of the more popular topics. Friendships may then develop that are relatively safe from criticism and based on mutual interests. Another source of friendship can be two autistic students who are talented in similar areas, such as art and drawing, or music, who can then share ideas and techniques with each other.

Friendships with autistic adolescents may be achieved out of school hours by attending events such as Comic Book, Cosplay, and fan conventions, meeting like-minded peers. We have run many autistic adolescent groups on themes such as emotion regulation, building resilience to bullying, being the authentic self, and the dating game. We have found that many participants developed friendships during and beyond the group sessions.

Animals as friends

Animals provide unconditional acceptance. The family or personal dog is always delighted to see you, despite the day’s disappointments and exhaustion. The horse seems to understand you and wants to be your companion. The cat jumps on your lap, and purrs with delight in your company. Pets, and animals in general, can be effective and successful substitutes for human friends, and a menagerie becomes a substitute ‘family’. Animals identify with, and feel relaxed in the company of, a non-predator (the autistic adolescent), and pets can be a source of comfort and reassurance. A special interest in, and natural understanding of, animals can become the basis of a successful career. We have also found that autistic adolescents are often more able to perceive, and have compassion for, the perspective of animals than they are that of humans, with a greater sense of trust and mutual understanding.

Internet friends

An autistic adolescent may have achieved an advanced level of expertise on multi-player games and is genuinely admired by fellow gamers, who actively seek the autistic adolescent as a member of their team. They are accepted and valued because of their knowledge rather than their social persona and appearance.  This status and appreciation can be a rare and intoxicating experience. One of the advantages of this form of entertainment and friendship is that autistic adolescents have a greater eloquence in disclosing and expressing thoughts and feelings through typing rather than face-to-face conversation.  In social gatherings at school, the adolescent is expected to be able to listen to and process the other person’s speech, often against a background of other conversations, to immediately reply, and simultaneously analyse non-verbal cues such as gestures, facial expression, and tone of voice. However, when using the computer screen, the person can concentrate on social exchange without being overwhelmed by so many sensory experiences and social signals.

The Internet provides an opportunity to meet like-minded individuals who can get to know each other using game chat lines, web pages and message boards dedicated to autism. However, as in any social situation, the autistic adolescent may be vulnerable to others taking advantage of his or her social naivety and desire to have a friend. The autistic adolescent needs to be taught caution and not urged to provide any personal information until they have discussed the Internet friendship with someone who can be trusted.

Activities for parents

The end of the school day, when the autistic adolescent has recovered from the educational, social, and sensory challenges of their day at high school, may be a time to discuss any aspects of friendship that have been successful or confusing. The conversation may start with sharing positive friendship experiences, such as an enjoyable time with a group of peers in an academic or recreational activity, helping a peer, or sharing interests and knowledge. However, there may have been times when the autistic adolescent had difficulty accurately reading non-verbal communication and a peer’s intentions.

A game of ‘Puzzling Peers’ can be played: the adolescent is asked to describe the situation, and replay the dialogue, gestures, and facial expressions. The parent and adolescent are then detectives or scientists trying to decipher the message or intention. This can include anything from confusing facial expressions such as eye rolling, to inexplicable demands from the peer (why did they assume I would be interested in this topic?) Other puzzling situations can be not understanding why they would be shunned and criticized for telling the truth (she is obese and needs to go on a diet) or not saying a ‘white lie’.

A parent may explain how to elicit more information, with questions for the young person to ask, such as ‘are you saying that to be friendly or mean?’ or ‘I’m confused, are you being sarcastic?’ They can also help rehearse what to say and do in other situations, such as accepting or declining an invitation to meet and learning the cues and means of ending a conversation or interaction. It is important that friends are not offended by an abrupt ending to a conversation or social gathering, as offence was not intended.

We all of us have a limited capacity for the duration of social contact, and it may be helpful to apply the metaphor of filling a ‘social bucket’. Some typical teenagers have a large social bucket that can take some time to fill, while the autistic teenager has a small bucket – a cup – that reaches capacity relatively quickly. Conventional social occasions with a friend can last too long for the autistic adolescent, especially as social success is achieved by intellectual effort rather than natural intuition. Socializing is exhausting, and the teenager may need to emotionally recover in solitude at home.

It is important for parents to be aware of the friendship challenges faced by their autistic teenager, including a difficulty initiating social contact with peers, and finding someone that they want to talk to and spend time with. As an autistic teenager said, ‘It’s not that I’m antisocial, it’s that I don’t meet many people that I like.’ The parent may need to become a social secretary, arranging and rehearsing social events to encourage the development of friendships, and de-briefing after the event, focussing on what was socially successful and providing clarification and guidance where specific social skills need to be achieved.

Friendship curriculum for teachers and therapists

We now have resources and programmes for parents, teachers and therapists that are specifically designed to enhance friendship abilities in autistic adolescents.

We recommend the publications and programmes developed by Michelle Garcia Winner and Pamela Crooke, with more information available from socialthinking.com. They have developed resources and guide books such as: Socially Curious and Curiously Social: A Social Thinking Guidebook for Bright Teens and Young Adults Social Thinking graphic novels.

Carol Grey originally developed Social Stories to explain the social world to autistic children and adolescents. More information on Social Stories can be obtained from carolgraysocialstories.com. Carol has adapted Social Stories for adolescents; for example, Carol and Tony worked on a compliment guide and workbook for autistic teenagers and adults

https://carolgraysocialstories.com/wp-content/uploads/2015/10/Spring-1999-ISSUE-AND-INSERT-.pdf

Carol’s work has been extended by Siobhan Timmins who has written Successful Social Stories for School and College Students with Autism and Successful Social Articles into Adulthood. Both books are published by jkp.com

University College of Los Angeles’ Program for the Education and Enrichment of Relational Skills (PEERS) is an evidence-based social skills intervention that began with autistic adolescents, and has expanded to offer services for young adults. https://www.uclahealth.org/vitalsigns/peers-aims-to-improve-social-skills-for-young-people-with-autism-spectrum-disorder

Sessions cover topics such as:

developing and maintaining friendships.

romantic relationships and dating etiquette.

managing peer conflict and rejection.

conversation skills.

electronic communication.

developing friendship networks.

finding sources of friends.

appropriate use of humour.

The PEERS programme has been the foundation of a range of social and friendship programmes in many countries and in Australia by www.codeblueforautism.com.au

Minecraft is a popular pastime with autistic adolescents, and the computer game has been adapted to teach social skills by Raelene Dundon. Her book is titled Teaching Social Skills to Children with Autism Using Minecraft published by www.jkp.com

Drama activities can be used to teach social skills and there are two books that describe drama activities to improve the social skills of autistic adolescents. They are:

Acting Antics: A Theatrical Approach to Teaching Social Understanding to Kids and Teenagers with Asperger Syndrome by Cindy B. Schneider, published by www.jkp.com

Act it Out: One Year of Social Skills Lessons for Students Grades 7-12 Social Skills for Teens with Autism Spectrum Disorder by Jeannie Stefonek, published by www.aapcpublishing.net

There are a range of relevant books published by www.jkp.com, such as:

The Asperkid’s Secret Book of Social Rules: The Handbook of Not-So-Obvious Social Guidelines for Tweens and Teens with Asperger Syndrome by Jennifer Cook O’Toole

60 Social Situations and Discussion Starter to Help Teens on the Autism Spectrum Deal with Friendship, Feelings, Conflict and More by Lisa A. Timms

The Asperger Teen’s Tool Kit by Francis Musgrave

How to Start, Carry On and End Conversations: Scripts for Social Situations for People on the Autism Spectrum by Paul Jordan

Asperger’s Rules: How to Make Sense of School and Friends by Blythe Grossberg.

Social Skills Groups for Children and Adolescents with Asperger’s Syndrome: A Step-By-Step Program by Kim Kiker Painter.

Freaks, Geeks and Asperger Syndrome: A User Guide to Adolescence by Luke Jackson.

There are three resources not published by Jessica Kingsley Press.

Asperger’s Teens: Understanding High School for Students on the Autism Spectrum by Blythe Grossberg, published by Magination Press.

Communication Skills for Teens: How to Listen, Express and Connect for Success by Michelle Skeen, Matthew McKay, Patrick Fanning and Kelly Skeen published by Instant Help Books.

Unwritten Rules of Social relationships: Decoding Social Mysteries Through the Unique Perspectives of Autism by Temple Grandin and Sean Barron published by Future Horizons.

The autistic teenager may not know of their diagnosis, or reject books that include the terms autism or Asperger’s syndrome in their title or text. The following are publications that provide guidance in making friends without using the ‘A’ word.

Making Friends: A Guide to Getting Along with People by Andrew Matthews published by Media Masters.

A Good Friend: How to Make One, How to be One by Ron Herron and Val J. Peter published by Boys Town Press.

Awkward: The Social Dos and Don’ts of being a Young Adult by Katie Saint and Carlos Torres published by Future Horizons

The Science of Making Friends: Helping Socially Challenged Teens and Young Adults published by John Wiley and Sons

Latest research on camouflaging

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Latest research on camouflaging

Children who have autism will know at quite a young age that they are different to their peers with regard to the ability to read facial expressions, body language and social cues, and are different to their peers in the ability to make and keep friends. How does the child with autism cope with this knowledge?

One way of coping is to avidly observe other children and adults and to analyze their social behavior, looking for patterns or social ‘systems’ and copying or imitating what you see and hear. This coping mechanism of acquiring social skills by observation and imitation is an intellectual rather than intuitive activity. The child or adolescent subsequently creates a social ‘mask’ and artificial persona, gradually acquiring social scripts in terms of dialogue, facial expressions, and gestures that they have observed, analyzed, and imitated. This coping mechanism is known by clinicians and academics as camouflaging and was first recognized as a consistent theme in the autobiographies of women who have autism, such as in Liane Holiday Willey’s seminal autobiography Pretending to be Normal. (Holliday Willey 1999). Clinicians specializing in autism also became more aware of camouflaging when observing girls and women in social situations at school and work and during a diagnostic assessment or therapy session. Recent research has confirmed that camouflaging is not an exclusively female phenomenon and occurs with males who have autism (Cage and Troxell-Whitman 2019; Hull et al 2020; Lai et al. 2017). We now know that 70% of adults who have autism consistently use camouflaging in social situations (Cage and Troxell-Whitman 2019).

The motivations for camouflaging are varied and include a means of protection from ostracism, humiliation, and bullying and facilitating being accepted and included by peers at school and colleagues at work. Camouflaging can also contribute to gaining and maintaining friendships and relationships. A husband who has autism explained one of his reasons for camouflaging was that “…it makes my wife less embarrassed to be seen with me” (Cage and Troxell-Whitman 2019). Camouflaging becomes a social survival mechanism, being an obligation rather than a choice (Mandy 2019).

We now have a questionnaire to explore whether a person engages in camouflaging in social situations and the degree of camouflaging (Hull et al. 2019). The Camouflaging Autistic Traits Questionnaire (CAT-Q) was developed from discussing aspects of camouflaging with adults who have autism describing their social experiences and abilities. A recent study using the CAT-Q found that females who have autism had higher total camouflaging scores on the questionnaire than males who have autism. While camouflaging is not an exclusively female phenomenon, in general females are better at camouflaging and more likely to use camouflaging in a wider range of social situations (Hull et al 2020).

Camouflaging can also delay the diagnosis of autism, eliciting comments such as, ‘You’re too social to have autism’. This will delay and inhibit self-understanding and self-acceptance (Bargiela, Steward and Mandy 2016). A delay in confirming the diagnosis will also delay access to appropriate support networks and services, and understanding by family and friends.

We recognise that social acceptance and success through camouflaging will have been achieved at some psychological cost. There can be performance anxiety in social situations, as though the person is continually ‘on stage’ and at the end of the day, ruminating on their social ‘performance’ and the perceived judgement of friends and colleagues. As social inclusion is achieved intellectually rather than intuitively, camouflaging is mentally exhausting. Like Cinderella at the ball, the person can maintain the social pretence for a while, but then becomes totally drained of mental energy and must return home to recover in solitude. The unrelenting mental exhaustion of camouflaging can lead to prolonged stress, anxiety, and depression, and may be one of the reasons for self-harm and suicidal ideation. Thus, camouflaging can contribute to the development of a deep and prolonged depression.

The psychological consequences of camouflaging can also include a lack of knowledge and expression of the inner and true self, with many adults who are successful at camouflaging saying, ‘I don’t know who I am’, and ‘I never reveal the real me’. This creates a lack of self-identity, low self-esteem, and prolonged self-analysis. The person recognizes that friendships and relationships are based on deceit, with the presentation of a ‘false’ identity leading to feelings of deep inner loneliness. The person yearns to find, and be able to be, an authentic self, but is aware that when the true self is revealed, they may be rejected and despised.

In psychotherapy we recognise that there are times when camouflaging or ‘acting’ is necessary, as in the phrase ‘when in Rome, do as Romans do’. However, we also encourage the person to restrict the duration of camouflaging during their day to a level that is not detrimental to mental health. In other words, be true to the real self and to learn ways of explaining social difficulties and seeking sympathy and support rather than playing the exhausting and false role of a neurotypical.

References

Bargiela, Steward and Mandy (2016) Journal of Autism and Developmental Disorders 46, 3281-3294

Cage and Troxell-Whitman (2019) Jr. Autism and Developmental Disorders 49 1899-1911

Holliday Willey (1999) Pretending to be Normal: Living with Asperger’s syndrome. Jessica Kingsley Publishers

Hull et al (2019) Jr. Autism and Developmental Disorders 49 819-833

Hull et al (2020) Autism 24, 352-363

Lai et al. (2017) Autism 21, 690-702.

Mandy (2019) Autism 23 1879-1881

“I’m bored”: a translation

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“I’m bored” – a translation

The comment “I’m bored” is often said by teenagers at high school, but those students who have autism may use this phrase to express a range of thoughts and feelings. A translation of “I’m bored” for those who have autism can be:

I do not have the energy to do this

At high school Students who have autism consume mental energy to process not only the academic curriculum but also the social curriculum as well as manage anxiety and sensory sensitivity. A typical day at high school is mentally exhausting, hence the comment “I’m bored” means “I have no mental energy to process this activity”.

This activity is pointless and irrelevant

Components of the high school curriculum may not have relevance to modern life or the future of the student who has autism. Typical students recognize that the activity is futile but will persevere to comply with the school’s expectations, maintain peer engagement and to pass exams. The student who has autism may not follow such conventions and if the activity is perceived as irrelevant, it may well be boring, and the student with autism may repeatedly express their opinion to the teacher.

This activity is too easy for me

The cognitive profile associated with autism can include abilities in advance of same age peers. The teacher usually presents the activity based on the average abilities of the students in the class. Thus, the student with autism may have completed the activity in advance of his or her peers and now has nothing to do and is bored.

The teacher is uninspiring

The style of teaching or personality of the teacher may be uninspiring, or the teacher may be depressed. The lesson is then boring for all students.

I am being treated as an idiot

Adolescents who have autism may not be successful socially or in school sports. Academic success then becomes important to achieve respect and for self-esteem. Thus, the student with autism often wants to demonstrate intellectual abilities. To say, “I’m bored” may translate to “I cannot demonstrate how smart I am”.

It makes me sound ‘cool’

One way of achieving social acceptance and inclusion is to imitate peers, especially the ‘cool’ students, who may often say “I’m bored”.

My imagination is more exciting

In the early grades of school, the child who has autism may recognize that he or she is different to their peers, and often excluded socially. One of the adjustment strategies is to escape into imagination, perhaps as a super hero who has special and valued powers or an alternative world such as Hogwarts or being with animals. The imaginary world is exciting and with achievements that are elusive in reality. There is a huge contrast between the social and academic classroom and an imaginary world, hence the lesson is boring in comparison to enjoying a vivid imagination.

I cannot understand what the teacher is saying

Autism can be associated with specific language and learning difficulties, such that the teacher may be talking too fast or using complex language structures for the adolescent to cognitively and linguistically process the information. There may also be difficulty discriminating the teacher’s voice from the voices of nearby children quietly talking to each other, or the teacher may be using idioms and sarcasm that are confusing.

I am feeling depressed

There is a high level of depression in teenagers who have autism. One of the characteristics of depression is anhedonia, an inability to experience pleasure or interest in a formerly pleasurable activity. Favourite subjects such as mathematics, information technology, art or drama are no longer enjoyable due to feeling depressed.

Thus, parents and teachers may need to translate the phrase “I’m bored” as an expression that has many meanings.