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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

Autism and sleep

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Autism and sleep

Introduction

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

Sleep profile associated with autism

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

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

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

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

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

Effects of sleep deprivation

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

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

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

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

Causes of sleep issues associated with autism

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

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

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

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

Assessment of sleep quality and duration

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

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

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

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

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

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

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

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

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

Journal references

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

Bishop-Fitzpatrick and Rubenstein 2019 Research in ASD 63

Buckley et al 2010 Archives in Pediatric Adolescent Medicine 164

Gray 2010 The New Social Story Book Future Horizons, Arlington

Humphreys et al 2013 Archives of Diseases in Childhood 99

Hunter et al 2020 Research in ASD 79

Johnson and Malow 2008 Current Treatment Options in Neurology 10

Jovevska et al 2020 Autism in Adulthood 2

Lalanne et al 2021 International Journal of Molecular Sciences 22 1490

Lambert et al 2016 Research in ASD 23

MacDonald et al 2021 Research in ASD 81

Mazurek and Sohl 2016 Journal of Autism and Developmental Disorders 46

Marlow et al 2014 Journal of Autism and developmental Disorders 44

McLay et al 2021 Journal of Autism and Developmental Disorders 51

Ming et al 2009 Clinical Medicine Insights: Pediatrics 3

Moss et al 2014 Journal of Autism and Developmental Disorders 44

Pavlopoulou 2020 Frontiers in Psychology 11 Article 583868

Stewart et al 2020 Research in ASD 77

Vermeulen et al 2021 Journal of Child Psychology and Psychiatry 62

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

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

Autism and bullying

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Autism and bullying

Are the rates of bullying higher for autistic children?

Many of the autistic children and adolescents we see as clinicians have experienced frequent bullying by peers at school, and we are very concerned about the psychological consequences. Research has been conducted on the prevalence rates of bullying for autistic children and 40% experience daily bullying and a further 33% experience bullying two to three times a week (Schroeder et al 2014). This contrasts with the prevalence of being a target for bullying for typical children of only 10% (Olweus 1993).

Why are autistic children more likely to experience bullying?

In typical children, we recognise two types of targets, passive and proactive. A passive target is usually a child who is anxious, has low self-esteem, shy, engages in solitary pursuits and does not have an extensive network of friends. This could be a description of an autistic child who is an introvert. A proactive target wants to engage with peers but has poor social skills and is perceived as irritating by peers. This could be a description of an extrovert autistic child.

Other factors that may contribute to autistic children being bullied more than their peers is having low social status, such as, having few if any friends to come to their defence and not being good at character and intention judgements to identify and avoid children who engage in bullying.

Types of bullying

There are many expressions of bullying, and these include:

Verbal such as obscenities and sarcasm

Physical with actions that cause pain and discomfort

Emotional and psychological such as gossip, rumours, and derogatory comments, for example, “you’re so ugly/stupid or a loser” The term autistic can also be used as a derogatory comment

Practical jokes and humiliation

Sexual with inappropriate touching, gestures, and actions

Being set up and unaware of the implications of complying with the instructions

Cyberbullying

An example of cyberbullying and its consequences are illustrated in the following quotation.

My cyberbullies were relentless and would never leave me alone. I wanted to kill myself because I felt there was no way to get away from them, but I was scared I’d fail because I was such a pathetic loser. I never felt safe anywhere. So, I would cut myself in places that no one could see. The physical pain never matched the emotional pain I felt with what the bullies would say to me. (McKibbin 2016, page 61)

Where does bullying occur?

Those who engage in bullying do not want to be caught and reprimanded by a teacher, so most acts of bullying occur at locations where the incident is less likely to be detected. Bullying is most likely when there is no adult supervision such as hallways and on school transport and can also occur close to or in the home by children of neighbours, family friends and relatives. However, bullying attempts occur most frequently at school. Most bullying actions are covert with only 15% observed in the classroom by a teacher, and only 5% in the playground (Olweus 1993; Rigby 1996).

The autistic child’s signs of being bullied

There may be physical evidence such as lost or damaged possessions, torn clothing, and medical evidence such as bruising, injuries, stomach and head aches and difficulty getting to sleep. Psychological evidence and include increased anxiety, especially before school, depression and responding violently to bullying leading to school suspension. There can also be signs of lack of trust of peers and even paranoia, and a change in the special interest to weapons and violent films with drawings of retribution and retaliation.

The psychological effects of being bullied

Being bullied increases signs of anxiety, suicidal ideation, self-harm and depression (Ung et al 2016), as illustrated in this quotation:

Bullying for me was at its worst in secondary school. My bullies were merciless- they would make fun of me and tease me in the classroom- even in front of the teachers. And when I would look to the ‘trusted adult’ in the room for help, begging them to make it stop, I found them laughing with my bullies- making it worse and making my days even more intolerable. I tried to kill myself when I was 14 years old and ended up in hospital. It was only then that my parents finally agreed to let me do home-school. To this day, I swear it saved my life. (McKibbin 2016 page 67.)

The derogatory comments of those who engage in bullying create within an autistic child, a deepening negative self-belief due to being relentless and not contradicted by friends. The self-belief is that I am stupid, or psycho, or that no one will ever be my friend. Rates of anxiety and depression are lower in autistic children who are not the target of bullying (Schroeder et al 2014) and experiences of being bullied may need to be addressed in psychological treatment of anxiety and depression.

The autistic child may not understand why they are the target of bullying and why someone would intentionally cause distress. They subsequently ruminate on the acts of bullying, replaying the events in their mind, and especially when falling asleep, to try to determine the motivations of the person who engages in bullying and cannot forgive or forget until they have closure by understanding why and they are not at fault.

School can become a ‘war zone’ and incidents of bullying can lead to signs of Post-Traumatic Stress Disorder (PTSD). Bullying can also contribute to camouflaging autistic traits (Cage and Troxell-Whitman 2019) as in the following quotation from the research study with a participant explaining why she camouflaged her autism: To stop bullying and mocking as I’ve experienced when not masking.

Being bullied is also a contributory factor for developing an eating disorder (Brede et al 2020). The research found that autistic and typical adolescents that developed an eating disorder often talked about difficulties in friendship and experiencing loneliness, bullying and abuse which affected their eating.

Autistic children’s response to bullying

They may have a limited repertoire of responses to acts of bullying, with a propensity to respond with aggression and violence earlier than typical peers. If their experiences are not taken seriously, they make ‘take the law into their own hands’ which could lead to tragic consequences.

Strategies to decrease the frequency and type of bullying

There needs to be a whole school approach that includes the target, school administration, teachers, professionals, parents, other children, and the child who engages in bullying. This strategy will require an agreed code of conduct, staff education and consistency and the concept of justice and appropriate consequences based on the degree of responsibility. The following are brief explanations of ten strategies for autistic children.

The changes here are more about everyone changing, rather than the autistic child having to do all the work:

1: Create a map of safe and accessible places where the likelihood of being bullied is reduced and highlight vulnerable places, such as locations away from adult supervision.

2: Educate and inform students on the life-long consequences of someone who is the victim of bullying, but also who engages in bullying,  to ‘rescue’ both parties. Bystanders need to be assertive and intervene when acts of bullying occur.

3: Avoid vulnerable situations such as trying to hide in the toilets

4: Security is in numbers. That is being near other children or adults.

5: Prepare the child with an appropriate response which has been created together with adults and peers which has been rehearsed.

6: The autistic child will need an explanation why they were the target, but also the psychology of those who engage in acts of bullying.

7: Ensure that ALL students understand the consequences according to the relevant school rules and based on equitable social justice.

8: Support and provide guidance for all students in determining the difference between friendly and not friendly teasing.

9: Understanding the value of disclosure and who to disclose to and how.

10: Access literature and resources on bullying and autism such as No Fishing Allowed: Reel in Bullying by Carol Gray and Judy Williams and the books on bullying such as those published by Jessica Kingsley publishers www.jkp.com

Parents may consider how to communicate their concern with the school, recording incidents of bullying and the informing the school and psychologists of the child’s ability to cope with bullying and effect on mental health. They may also consider enrolling the child in a martial arts class, could you add something here about why you this could be beneficial, such as, increase self-confidence, rather than others implying that violence is the solution.  and changing school which may or may not contribute to reducing the frequency of bullying. Another option considered by parents and the child is home schooling.

References

Cage and Troxell-Whitman (2019) Journal of Autism and developmental Disorders 49, 1899-1911.

Gray, C. and Williams J. (2006) No Fishing Allowed: Reel in Bullying Arlington, Future Horizons

McKibben K. (2016) Life on the Autism Spectrum: A Guide for Girls and Women. Jessica Kingsley Publishers

Olweus, D. (1993) Bullying at school, Cambridge: Blackwell

Rigby, K. (1996) Bullying in schools. London, Jessica Kingsley Publishers

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

Ung et al (2016) Research in ASD 32, 70-79

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

Computer gaming and COVID

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Computer gaming and COVID

The following article is Tony’s chapter from the new book:
Life After Lockdown: Resetting Perceptions of Autism Strategies and Reflections

Edited by Rebecca Silva, Ruth Prystash, Rene DeLoss, and Carol Burmeister (Foreword by Peter Vermeulen)

Available to purchase here

The past year has marked us as one of the only generations to experience a global pandemic. The pandemic kept people at home, something that suited many autistic individuals. But it also limited the opportunities for social and emotional growth for autistic teens and young adults, and one of the obvious outlets became computer games. These games were already intensely important to many autistic youth, but now they became more so, as there was little else to occupy their minds and their time. Computer games can be beneficial, but they can also be addictive. This is a story that needs to be told, because nobody else is talking about it.

COVID’s impact on the autistic teen or young adult

Many individuals have begun displaying an increase in routines and rituals, heightened sensory sensitivity, and more engagement with special interests. These are all ways of coping with anxiety. People have been cooped up together for the past year, which can be difficult for a person with autism who craves solitude. There may even be anxiety about what will happen when we begin to have more face-to-face contact and are forced to endure crowds again.

There is a misconception that people with autism lack empathy. The opposite is actually true: Autistic individuals are often acutely aware of other people’s mental states. The news speaks of a killer virus and the rising numbers of dead; children worry about their family members’ health. There has been more free time at home this year for the anxiety to percolate and one way to alleviate that anxiety is the computer game.

Computer gaming—a perfect fit for autism

There are a number of factors that make computer games extremely popular with people on the spectrum. Gaming provides a sense of achievement and identity. It allows you to show your capabilities independent of autism. The main issues of autism are social-conversational, but in gaming you have no real socialization and you have no conversation, so you have basically bypassed autism. Gaming is a natural talent because it suits the autistic cognition. However, it also involves considerable practice. A person can become a master of a skill that requires great ability but also practice. It is the same for a child with computer games. They are talented at computer games, and are motivated to practice. If you want to measure the intelligence of an autistic child, watch them play computer games. The game bypasses their autism, they are highly motivated, and you can see how quickly and effectively their brain works.

If you are not good socially and you are not good at sports, your intellect is very important to you, and you want to prove how smart you are. You want to demonstrate your intelligence and you want other people to appreciate that intelligence. With gaming you have a sense of achievement that is truly gratifying, especially as it is valuable to your peer group.

Autistic teens are searching for identity. Who am I? Why am I here? What is the meaning of life? Where do I fit in? I know I’m supposed to be like everyone else, but I’m not. I want a sense of identity and self-worth that is defined by something that is valued by my peers. The computer game does that. It gives a sense of identity to someone who is searching. The computer game becomes a way of fitting in. It becomes your identity when you have few ways to define that identity. And autism can make a person very lonely. Without social skills, it is sometimes hard to fit in to most same-age groups. Bullying and being excluded can leave autistic teens feeling isolated, while gaming provides a connection with fellow gamers who actually seek you out, rather than shun you.

Computer games give you immediate feedback. As many as 75% of those with ASD also display characteristics of ADD and ADHD. Computer gaming suits those characteristics, as it is based on immediate feedback on one’s performance without any waiting, which autistic people often dislike. Unlike school, where you may be waiting on feedback from a teacher, the game provides immediate feedback.

People are excited to see you online and that kind of genuine, deep welcome is intoxicating to someone with autism. Someone in your peer group actually wants to know you, and is pleased that you are there. Rather than the students who sometimes bully and tease and reject and humiliate, these gamers want to know you and are proud to be your friend. They give you compliments and admiration. But more than that, with your gaming skills, you also become a teacher to some, a mentor to others. You advise them. You are wise. You are talented. You are someone special.

In e-sports, a subgroup of gaming, there are leagues with teams and supporters; logos and colors; managers and favorite players. Players are bought and sold. There are e-sport competitions held in convention centers with thousands of people watching gamers. And in this world, you, the autistic individual, are the person the team wants to recruit. You are a hero in that world. Finally, you have a social network where you shine.  

Gaming as a coping mechanism

During COVID, anxiety and depression increased for many people, including people on the spectrum. A computer game is a thought blocker for anxiety and depression. When you are engaged in the game, you don’t feel anxious and you don’t feel depressed. Instead, you suppress and compress your thoughts and feelings. Computer games are more powerful than medications or cognitive behavioral therapy because they encourage the classic autistic characteristics of avoidance and suppression. When you are playing the game, you are in a bubble. Your problems disappear and you don’t care about anything else, but when you switch off the game, those feelings come back. Parents become frightened to see how angry their child becomes when asked to turn off the computer. What is actually happening isn’t really anger: It is the fact that their powerful feelings have not been dissolved or resolved. Once the game is gone—boom! The feelings are back, and they flood you with fear and despair.

A substitute for social interaction

In autism social emotional reciprocity is a core issue. In a computer game, you don’t have a real conversation going on. You don’t have to worry about reciprocity, you don’t have to read body language, and you don’t have to be involved in social chit-chat. One of the interesting things is that there are often chat lines in computer games, and they provide a means to communicate through typing, rather than talking. Clinically, that can be very valuable. When a client sends me an email, I may receive far more information and insight into the individual’s world than I do in person, because it involves typing, not talking. There is a greater fluency and disclosure of thoughts, feelings, and revelations of the self through typing, rather than talking.

The games have very clear and simple rules that aren’t like social rules. Social rules are inconsistent and complex, and there are always exceptions. Neurotypical kids do things that that are against the rules and get away with it, even though you’re not supposed to get away with it! But in gaming, there are simple rules that are always enforced. There is no inconsistency and no uncertainty, so you are secure in the rules of the game.

A sense of pleasure and enjoyment

If you ask a neurotypical about the greatest moments of excitement and joy in their life, it usually involves another person–giving birth, getting married, falling in love. But with autism, other people can be a source of confusion, so pleasurable memories rarely involve them. Computer gaming, on the other hand, gives you experiences of pleasure and enjoyment when there are very few in your life. This is incredibly intoxicating. Gaming is addictive because it feeds into pleasure-seeking and enjoyment. For someone who may have few pleasures in life, experiencing such a high level of excitement—perhaps the greatest enjoyment you have ever received—is euphoric.

Creating an alternative world

In the real world of daily life, the teen with autism is often not respected or included. But here in the computer game, you are in a world where you are both respected and included. The special interests of people on the spectrum are often an attempt to find a world in which to belong. Anime, Pokemon, Manga–another culture, another country, another time in history where you fit in. Science fiction–you go to another planet where you are recognized and valued. The game creates an alternative world where you have a sense of belonging. The real world may not value you or respect you, but in this world you are remarkable, and that’s why you want to stay.

Avatars are virtual selves that you can create in a computer game. An avatar allows you to experiment with personality, analyzing the interests and people who are important in your life. This is what most teenagers do in the real world. I’m going to be an adult, so what kind of adult am I going to be?  Who do I value, who are my heroes, and can I borrow some of their characteristics? In a computer game you can experiment with that even further. If you’re concerned about your weight, your avatar is slim; if you’re concerned that you’re not smart enough, then your avatar is a genius. It is very powerful.

The dangers of computer gaming

Immersion into computer gaming can mean that individuals are not learning to cope with emotions. Instead, they’re learning to avoid them. They are compressing and suppressing, and are not processing their feelings appropriately. This means that when they start playing the games in earnest, their emotional maturity freezes and levels off. Emotional regulation is stunted. Individuals learn to rely on the game rather than the actual social skills which will serve them in the real world.

When we look at the long term effects of gaming, we see medical issues. Individuals become overweight, with poor eating habits. Junk food is quick and easy while you are on the computer. Some individuals will spend enormous amounts of time online—from 10- 16 hours per day. There is a lack of exercise and exposure to sunlight, so health effects arise.

It is also very disruptive to sleep patterns. One of the effects of extended screen time is that a person’s thoughts increasingly spiral once the game is turned off. Thoughts become incoherent and chaotic, and sleep becomes more and more elusive. That’s why there should be no screen time for one to two hours before bed. In autism, sleep is always been a problem, from infancy on through senior adulthood. Sleep is important for processing intellectual information and processing emotions. When you have a good night’s sleep, inappropriate behaviors diminish. With too little sleep, the opposite is true.

One of the inherent dangers in gaming is a potential tie-in to gambling. In computer games there are commodities called loot boxes. These loot boxes pop up during a game, offering the opportunity to purchase something that may or may not contain useful items. Most boxes have ordinary items, but the gamer will continue to buy them, lured by the possibility of scoring something big. The odds of it having what it advertises are very rare, but the possibility keeps gamers buying more, and so gambling becomes embedded in games. Parents should be aware of this connection, as it is one more avenue to addiction.

When gaming becomes an addiction

The computer gaming industry has the potential to rob us of some very bright minds, who may get caught up in the addictive side of gaming. When teens begin to avoid things that were recently part of their routine, there may be a problem. If you tell your teen to get off the computer for lunch and they become incredibly agitated, avoiding lunch in order to play the game—that’s a worry. If they become upset when a legitimate request interferes with access to the game, then the depth of engagement is now of considerable clinical concern. Their world revolves around the number of hours they spend on the game, and they become agitated when other activities interfere. For example, you used to have evening meals as a family, spending time together. Now the teen arrives at the table at the last moment, bolts down food, and then, boom. Gone. No conversation. No engagement. The individual withdraws from a variety of activities that used to be important for the family and enjoyable for themselves. The game is taking control. This is common in addiction: instead of the person controlling the game, the game is controlling the person.

One of the first casualties of any addiction is truth. The individual will hide their actual time online, like an alcoholic hides their alcohol. They will also have access to games on their phones. Gaming should absolutely be included in the same category as alcohol and drugs for individuals with autism. These individuals struggle, not with autism, but with emotional regulation. Because the game is so good at moderating intense emotions, they are reluctant to switch to anything else.

Dealing with the addiction

One thing that parents should not do is take away the game as punishment. The games provide the teen or young adult with an identity, coping strategies, a social network—what they live for. If adults remove this without providing the child with other coping mechanisms or alternative activities, this ends up being, not punishment but revenge. Parents will end up escalating the punishment from a day to a week to the threat of totally removing the computer, and the teen will respond with defiance and anger. It can quickly escalate into a civil war which no one wins.

If we want to address the behavior constructively, it is important to carefully identify the issues of behavior management or encouragement of chores or other commitments. There must absolutely be consequences, but they must be appropriate. For example, if a teen does something that upsets his sister, an appropriate response might be to have him take responsibility for one of her chores for a week. The time that is spent on that chore would have been spent on the computer, so it is a means of restricting access through teaching an appropriate replacement. It is possible to use the computer as a reward. For example, if the child does their homework, they can have an extra half hour on the computer. This uses the computer as a reward or an encouragement, rather than as punishment. It also teaches a part of growing up. You want more time on the game, but you’ve got to do your chores. That’s life.

When a parent suspects addiction, they can use logic to deal with it. Get a big piece of paper and list the positives and negatives of computer games with the individual. The positives are that it helps manage emotions and it makes the child popular. So how can we help the individual achieve these things outside the game? We can find more conventional and diverse ways of achieving those things, initially in addition to the computer game and eventually as alternatives. Next list the negatives: being overweight, spending huge amounts of time on the game and nothing else, the lack of honesty, and the lack of constructive ways in their lives to learn to deal with emotions. Help the individual compare these lists and set goals.

In terms of strategy, first get an accurate accounting of the amount of time spent gaming. Instead of aiming for an unrealistic goal, like an entire game-free day, try for something more reasonable. For example, start with reducing time by 15 minutes every day for three weeks. If successful, then decrease by 15 more minutes for three more weeks. Use small steps. Parents must provide alternatives that bring pleasure to the child, like being outdoors or spending time with pets. Families must also try to help the individual increase their social network through constructive means so the individual is actually learning to relate and manage conflict.

There are currently few treatment options for addiction in autistic individuals. Therapy for addiction needs to develop expertise, theoretical models, and a whole range of strategies for gaming addiction, especially for autistic individuals. We need psychiatrists and psychologists who are aware of this and work to modify therapy to accommodate the autistic way of thinking.

Final thoughts

As we continue to deal with the effects of the current pandemic, it’s important to realize that many of our brightest autistic individuals are going into the medical and research fields. These individuals, with their logical brains and skill at analyzing systems, have the ability to understand the behavior of a virus and can use their intellect to help develop cures. The intense focus of which they are capable allows them to tolerate 18-hour days in a lab. Instead of looking at a computer screen, they are looking into a microscope. Let’s hope that we can guide them to those labs, and show them that their brilliance is not only appreciated, but desperately needed, and that they are indeed invaluable members of society.