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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.

Adolescent autistic friendships

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Adolescent autistic friendships

Typical adolescent friendships

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

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

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

Autistic friendships

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

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

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

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

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

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

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

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

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

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

Autistic friendships for girls

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

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

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

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

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

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

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

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

Resources and programmes on friendship

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

An autistic friend

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

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

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

Animals as friends

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

Internet friends

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

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

Activities for parents

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

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

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

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

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

Friendship curriculum for teachers and therapists

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

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

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

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

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

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

Sessions cover topics such as:

developing and maintaining friendships.

romantic relationships and dating etiquette.

managing peer conflict and rejection.

conversation skills.

electronic communication.

developing friendship networks.

finding sources of friends.

appropriate use of humour.

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

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

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

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

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

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

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

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

The Asperger Teen’s Tool Kit by Francis Musgrave

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

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

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

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

There are three resources not published by Jessica Kingsley Press.

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

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

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

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

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

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

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

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

Autism and addiction

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Autism and addiction

It used to be assumed that those who have an Autism Spectrum Disorder are not at greater risk of developing an addiction than those with any other developmental disorder. However, in my own clinical practice. I have seen an increasing number of adolescents and adults with ASD who have signs of addiction, primarily alcohol and drug dependency, and excessive time engaged in computer games. The question has then arisen as to why someone with an ASD is predisposed to develop such an addiction. The simple explanation is either to engage reality or to escape reality. To explain this seemingly contradictory statement, the specific characteristics of ASD need to be considered.

One fundamental characteristic of ASD is a difficulty socializing with, and being accepted by, peers. The machinery of social engagement creaks and squeaks, and alcohol and marijuana can act as social lubrication. The person with ASD may find socializing easier when mildly intoxicated; substances such as alcohol, marijuana and other drugs reduce social anxiety, and create a sense of relaxation and competence. Unfortunately, the person may then become dependent on these to facilitate any social engagement.

Another characteristic of ASD in adolescence is the tendency to be rejected by peers, engendering feelings of not belonging to any specific group or culture. The acquisition and consumption of alcohol and drugs – easily available and the ‘currency’ of popularity and status – can provide membership of a sub-culture composed of others who also do not fit into conventional society. However, they do accept those who are different and marginalized. This sub-culture has clear rules and expectations in how to dress, talk and behave, and has its own language and rituals, ‘friendships’ are formed, and the person is warmly welcomed, especially if he or she becomes a drug courier or supplier. Thus, for the wrong reasons, the person with an ASD belongs to a group and is accepted and valued by peers.

In the case of gaming, there can be an intense engagement, which provides a sense of achievement and identity, often through natural talent and considerable practice. The achievements in group player games on the Internet can lead to the person being popular with fellow gamers, who seek and admire his or her abilities, knowledge and guidance. When playing the game there is little, if any, social chit chat, and no requirement to process non-verbal communication or follow social conventions. The game provides excitement, respect and popularity, and becoming an avatar creates an enjoyable alternative reality.

Many of my clients describe trying to cope with racing thoughts, which are difficult to slow down, and ruminations that are extremely difficult to block. Alcohol and drugs can induce a deceleration of thoughts that are speeding out of control, and can stop ruminations.  Computer games can also be a very effective thought blocker to both ruminations over past events, and persistent negative thoughts that lead to low self-esteem and depression. These games can also act as an energizer when the person is socially and emotionally exhausted.

We recognize that around 85 per cent of those who have ASD also experience high levels of anxiety. Alcohol and drugs, both legal and illicit, can provide relief from constant feelings of anxiety. Some medications prescribed to reduce anxiety, such as the benzodiazepines, can themselves become addictive, with the person developing increased tolerance. There can also be a dangerous misuse of other prescription medications as the person self-medicates for anxiety, with the potential for a hazardous interaction of substances, and the very real risk of accidental overdose.

There are high levels of unemployment associated with ASD, leading to boredom, frustration and a sense of uselessness and under-achievement. Being part of the drug or gaming culture can provide purpose and structure for the day. There is a sense of achievement in seeking and finding drugs, and an opportunity to leave one’s accommodation and to meet people. Completing the various levels of the computer game can also provide structure and achievement, and the development of expertise that is recognized and valued by fellow gamers.

The use of substances or engagement in computer games can provide a sense of protection, ‘anaesthetizing’ the person from the effects of past trauma, such as being bullied, or being the victim of emotional, physical, financial or sexual abuse.  The addiction may alleviate any feelings of depression about the past, the current situation and future prospects.

Thus, there are many reasons why someone who has an ASD is vulnerable to developing an addiction. The next question is what to do when there are signs of addiction.

The first stage is to recognize the addiction, which may be affecting mental and physical health, and sometimes, as in the case of substance abuse, leading to criminal activities to pay for the substances. The person who has the addiction may lack insight into the depth of the addiction, failing to recognize their inability to cope without mind-altering substances or access to gaming. If there is recognition of the addiction, there nevertheless may be resistance to reducing the level of substances or engagement, as the person may not be able to conceptualize life without their ‘prop’.

The second stage is to address the dysfunctional use of substances and games. In the case of drugs, this may mean providing prescribed and carefully administered and supervised alternative medication. In the case of computer games, the amount of time gaming can be gradually reduced, and a wider range of activities encouraged, providing a sense of achievement and social engagement. Throughout this process, access to a clinical psychologist is beneficial, to provide advice, treatment and support for anxiety management, and to encourage the development of social skills and new social networks.

While the diagnosis of ASD may provide a rationalization for the addiction, it must also be considered when accessing support and therapy services. There will be those who enter the treatment services for addiction who have undiagnosed ASD; it is important that there is routine screening for ASD of all new participants in rehabilitation therapy and services for addiction, not only to determine the possible reasons for the addiction, but also, importantly, to modify the therapy according to the characteristics of ASD.

Rehabilitation services often rely on social living and group therapy and activities, and provide limited opportunities for personal space and solitude. The person with an ASD will benefit from a single room wherever possible. They will also need guidance and support in the social and disclosure requirements in group therapy. For example, there can be difficulties recognizing social and personal boundaries, converting thoughts and feelings into speech, knowing when to talk in a group, understanding how to resonate with the experiences and emotions of fellow addicts, and acknowledging the relevance of self-disclosure in a group setting. Staff need to know of these characteristics of ASD and must make appropriate accommodations.

The stress of group treatment and of staff not understanding ASD can lead to premature discharge from residential rehabilitation services. The person with an ASD may well become convinced that such services can never be effective. I would very much like to see rehabilitation services becoming more ASD friendly, and the development of an addiction treatment model specifically designed for those who have an ASD.

I have found that sometimes the person with an ASD can decide to end an addiction without therapeutic support. This takes great determination, and relies on one of the characteristics of ASD, namely that, once a decision has been made, the person is unwavering in seeking resolution and the desired outcome. However, the recommended treatment is conventional rehabilitation services and continuity of support.

Once the addiction is seemingly at an end, there is still the risk of relapse. It is important for the person with an ASD and their family members to accept lapses before there is complete and enduring freedom from addiction. It will be important that the person does not interact with previous drug or gaming associates, the associated culture and potential triggers. There will need to be support for stress and emotion management, encouragement to increase the network of social contacts and enjoyable social experiences, and the introduction of a new life style and schedule of daily activities. There will also need to be consideration of harm reduction and controlled usage versus total abstinence. Recovering from addiction is a long road, but the journey and destination may be life saving.

Latest research on camouflaging

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Latest research on camouflaging

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

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

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

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

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

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

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

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

References

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

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

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

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

Hull et al (2020) Autism 24, 352-363

Lai et al. (2017) Autism 21, 690-702.

Mandy (2019) Autism 23 1879-1881

“I’m bored”: a translation

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“I’m bored” – a translation

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

I do not have the energy to do this

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

This activity is pointless and irrelevant

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

This activity is too easy for me

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

The teacher is uninspiring

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

I am being treated as an idiot

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

It makes me sound ‘cool’

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

My imagination is more exciting

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

I cannot understand what the teacher is saying

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

I am feeling depressed

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

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

Managing an autistic meltdown

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Managing an autistic meltdown

Why do meltdowns occur?

Autistic people often have a different way of:

sensing internal and external stimuli

problem-solving

learning and organizing information

understanding and relating to

The daily challenges inherent in these differences can lead to the buildup of stress which can eventually be released as a meltdown.

To avoid and manage a meltdown, we need to determine:

the causes and triggers for stress and mental and/or physical tension

accommodations and modifications to the causes and triggers where possible

the signs of an imminent meltdown at the early and middle stages

best ways to support a person through a meltdown

activities for the person to safely release tension and stress

ways to facilitate emotional recovery for all those involved

The causes of a meltdown

The primary causes of a meltdown are stress from sensory sensitivity, cognitive overload, and aspects of social engagement.

Sensory sensitivity

One of the diagnostic characteristics of autism is hyper- or hypo-reactivity to sensory input. Clinical experience, autobiographies and research has confirmed that autism is associated with a different profile of exteroception and interoception. Exteroception is the perception of the external sensory world and interoception is the perception of the internal sensory world. We know that autistic individuals often have extreme sensitivity to external sensory experiences within the auditory, tactile, visual, and olfactory sensory systems.  The sensitivity is much greater than with typical individuals, and sensory experiences that are often not noticed and easily accommodated by non-autistic people, are extremely intense and distressing, if not actually painful, for an autistic person. We are also recognizing that autistic people may have an extraordinary sensitivity to negative emotions in other people. This can be someone’s agitation, disappointment, and anxiety. Negative emotions can be acutely and accurately perceived and ‘infect’ the autistic person, becoming a contributary factor for increased stress and a potential trigger for a meltdown.

While an autistic person may have a sensory system that is overly sensitive to external sensory and emotional experiences, there can also be a lack of perception of their internal sensory world, that is, a difficulty with interoception. This can include not being aware of the internal signals of hunger or needing to go to the toilet, body temperature, injury or imminent vomiting. Difficulties with interoception in autism can include difficulty perceiving and being consciously aware of increasing stress, especially emotional distress. There can be a mind and body detachment, and the internal signals of impending meltdown may not be recognized. Non-autistic individuals can perceive low level indicators of physiological and psychological stress and can also easily communicate and moderate their internal emotional state. An autistic person, on the other hand, may have alexithymia, that is, a difficulty explaining thoughts and feelings in words to communicate to someone that they are reaching breaking point. Eventually the level of distress is so intense that it is recognized, but at an intensity that is too great to be effectively controlled by the autistic person, or by those trying to moderate the degree of distress.

Cognitive overload

Autism is associated with a distinct profile of cognitive abilities that can contribute to increasing stress and frustration, leading to agitation and a meltdown. The cognitive profile includes less mental flexibility, or a ‘one track mind’. This means not knowing what else to do to solve a problem, quickly becoming frustrated and ‘hitting the panic button’. There can also be a difficulty mentally adjusting to change and transitions especially to a novel situation without a ‘script’ of what will happen, how to behave or what to do and say. Another cognitive cause of overload is having to cope with unclear instructions or expectations, and a need for prolonged processing time for information. This leads to a difficulty working at speed and coping with time pressure. Another cognitive characteristic of autism is stress from having to choose from multiple options, with a fear of making a mistake and being judged. There is also the potential of increasing stress due to ruminations over past slights, injustice, social rejection and bullying.

Social engagement

A core aspect of autism is a difficulty understanding people. Stress can be due to simply being with too many people, especially in crowded situations such as a shopping centre, station, or playground. There can be stress due to being in the presence of people who are not perceived as ‘autism friendly’. There is also stress from people making broken promises, such as saying, “I’ll be back in two minutes” and then not returning for four minutes and thirty seconds.

In social situations, there is an expectation that people are able to read facial expressions, tone of voice, gestures and social cues, while an autistic person may be able to intellectually process and ‘read’ this social information, it is exhausting for them. There is the potential to be confused by mixed messages, as in sarcasm, and determining the more subtle thoughts and intentions of others. There will be limited capacity for the duration of social engagement, and once that capacity has been reached, there is a risk of further social experiences being intolerable, which could contribute to a meltdown.

Social situations can also be associated with many aversive sensory experiences, such as being accidentally touched, the noise of shouting or applause, and the smell of perfumes and deodorants.

Signs of an imminent meltdown

Each autistic person will have a signature pattern of thoughts, behaviors and actions that indicate an imminent meltdown. The early warning signs may include knowledge that the person has probably come to the end of their ability to tolerate aspects of their sensory, cognitive, and social experiences. Signs of a more imminent meltdown can be a determination to escape the situation, engage in certain routines and rituals that serve to reduce anxiety and agitation, and avidly seeking access to a special interest as a thought blocker and energy restorative. Other signs can be increasing the volume of speech, and the use of obscenities, agitated gestures, refusing help or needing excessive reassurance. Talking about a specific topic or past injustice, or fragmented and incoherent thoughts and speech can also be signs of the level of agitation that precedes a meltdown.

Due to problems with interoception and alexithymia there may be few, if any warning signs perceived by the autistic person themselves or observed by others. A series of events may increase stress levels, lowering the threshold for a meltdown, and it may be one superficially trivial event that becomes the breaking point for the release of a build-up of stress over many hours or days.

A meltdown will be heralded by an increasing heart rate; a sports watch can be used to measure a person’s heart rate to indicate a meltdown is imminent. Another early warning system can be an Autism Assistance Dog or even the family dog. Animals may be able to perceive that a meltdown is about to happen sometime before the autistic person and their family members. The dog may seek the autistic person’s attention and become a distraction or engage in behaviour known to sooth the autistic person, thus reducing the likelihood of a meltdown.

How to manage a meltdown

There are two types of meltdown: one is outwardly directed, an explosion of emotional energy that is destructive, with feelings of rage and actions of destruction; the other is an implosion, with energy that is inwardly directed and expressed as intense despair, self-harm and suicidal thoughts. There is a potential third meltdown, or ‘shut down’. This is behaviour that acts as a means of self-protection. The person is physically immobilized, or ‘frozen’, and may even fall asleep as a means of ‘switching off.’

A meltdown is a psychological crisis, and there are recommendations regarding what to do and what not to do when a meltdown occurs. The following suggestions can help to minimize the depth and duration of a meltdown. The following suggestions are strategies to use in an outwardly directed explosion, or rage attack.

What to do in a meltdown

One person should take control of the situation.

The support person must remain calm, reassuring, and confident.

Affirm and validate the depth of emotion and explain that the feeling will eventually go.

Use calm, slow body language.

Use minimal speech.

Try to minimize eye contact for both of you.

If possible, be alongside the person rather than facing each other.

Keep other people away or encourage the person to take a position where other people are not visible to them.

Suggest a calming or distracting activity, such as an iPad, looking at information related to a special interest; or a mesmerizing activity, such as spinning and twiddling toys.

Accept restless behaviour, as this is a constructive means of discharging the energy inherent in a meltdown.

Praise compliance and calmness.

Suggest something to look forward to, or an enjoyable memory.

Suggest going to a quiet retreat area or separate room, or perhaps go outside in nature if possible.

An alternative option is to engage in a physical activity that constructively releases emotional energy, such as star jumps or press ups, or crushing items from the recycling bin.

Remember the meltdown can have a constructive function in releasing compressed stress and re-setting the emotion regulation system.

Wait patiently until the emotional storm has passed.

What not to do in a meltdown

Try not to:

Talk about punishment, consequences, damage, and cost.

Use reason when the person is too emotional to be reasonable.

Interrogate, that is ask for an explanation as to why the person is so agitated or distressed.

Encroach on personal space.

Turn the situation into a lesson.

Make sudden movements.

Correct agitated behaviours.

Match the person’s mood with your speech.

Criticise the person for being overly dramatic or selfish.

Use physical restraint.

Make critical, demeaning, or patronizing comments.

Facilitating emotional recovery

Eventually, the despair and agitation will subside. The autistic person may subsequently experience remorse or embarrassment and engage in self-criticism. In extreme cases, the person may have no memory of what happened, being confused and in a state of denial when a ‘post-mortem’ is conducted on their behaviour.

It will help to suggest a practical way of restitution and repairing feelings, for example, by asking the autistic person to clear up any mess or complete a household chore as a means of recompense.

When calm, the person may be able to give a coherent and logical description of why the meltdown occurred, preferably without fear of incrimination or increased consequences, which would inhibit an objective evaluation. There may need to be penalties that are mutually agreeable, and a focus on appropriate rewards for self-control in future situations when a meltdown may occur. It will also be important for everyone to learn from the experience, and to draw up a plan for preventing and managing a future meltdown. The plan will include more effective ways of perceiving, communicating, and expressing stress in the future.

The support person will also need to emotionally ‘debrief’ and express their thoughts and feelings in a non-judgemental conversation with someone who can express compassion. The conversation needs to focus on how well they managed the situation, and any new information that has been discovered that may reduce the frequency and intensity of meltdowns.

Recommended reading: From Anxiety to Meltdown (2011) by Deborah Lipsky, London, Jessica Kingsley Publishers.

Understanding challenging behaviour in classic autism

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Understanding challenging behaviour in classic autism

Classic autism is a term we use to describe our original conception of autism. A child or adult who has significant and conspicuous social, language, learning and behavioural impairments. We now use the term Autism Spectrum Disorder Level 2 or 3 to describe this expression of autism. Challenging behaviour can occur due to difficulties with communication, a distinct profile of cognitive and social abilities, sensory sensitivity and difficulty regulating emotions. There can also be movement disorders and medical factors that affect the behaviour of those who have classic autism.

Communication

One of the primary causes of challenging behaviour is frustration from not being able to effectively communicate thoughts and feelings. There is usually extremely limited speech which has not been replaced with a complex gestural communication system as occurs with deaf children. We are exploring the origins of the lack of speech which may be an expression of apraxia, that is a difficulty getting the brain into gear with the mouth and body. New therapies such as PROMT are designed to encourage speech by the specially trained speech pathologist using their hand to encourage jaw, lips, and tongue movement. There are also Apps to encourage vocalization and speech as well as advances in communication from Music Therapy and alternative and augmentative communication systems. It is important to remember that lack of speech does not automatically imply a lack of intelligence, and that for some classically autistic children, they learn to read before learning to speak.

When there is extremely limited speech, the signature mannerisms of autism are an effective means of communication. Parents and teachers often ‘translate’ the behaviour as thoughts such as “I can’t cope” or “I need help” or feelings such as jumping for joy or ‘in a flap’. These mannerisms can also be used as an early warning system of signs of distress and agitation.

Cognitive abilities

The cognitive profile associated with classic autism includes a range of characteristics that can affect behaviour. There can be a fear of making a mistake and a lack of cognitive flexibility such as not knowing what else to do. The overriding priority is to solve a problem rather than satisfy the social or emotional needs of others, with self-esteem from intellectual achievements. The learning style can be a ‘visualizer’ with a preference for a silent demonstration of what to do, and learning cognitive abilities and language from a computer or television screen. There can also be a talent and interest in identifying patterns and sequences and enjoying symmetry. However, there can be a very limited tolerance of frustration, with a tendency to quickly ‘hit the panic button’, having an intense aversive emotional reaction and giving up quickly to end the ‘pain’.

Social abilities

One of the central diagnostic criteria for autism is a deficit in social-emotional reciprocity, reading non-verbal communication and making and maintaining friendships. The social context can cause confusion, stress and feeling overwhelmed for autistic children and adults, leading to avoidance and escape behaviour. There are several relevant social dimensions such as the number of people in a room, intrusive peers and adults, and the duration of socializing. For an autistic person, socializing is emotionally and energy draining, rather than refreshing and enjoyable. There is a need for regular ‘oases’ of solitude, with a preference for solitude as an emotional restorative and for learning.

A characteristic of autism is to be extraordinarily sensitive to another person’s negative mood such as disappointment, anxiety, or agitation. There can be an avoidance of some social situations and specific people due to a perception of ‘negative vibes’ and quickly determining if someone is ‘autism friendly’. Some parents, teachers and therapists have an intuitive understanding of autism and facilitate social engagement rather than withdrawal.

We now have a range of programmes to encourage social abilities and confidence such as Social Stories developed by Carol Gray and ensuring social engagement, especially in a learning situation, that can be fun together.

Sensory sensitivity

Another diagnostic criterion for autism is sensory sensitivity. Specific sensory experiences are aversive and often painful. Repeated exposure does not automatically reduce the degree of sensitivity, but we can encourage endurance and develop avoidance and barrier strategies, such as vacuum cleaning the house when the child is at school, or using ear plugs or noise reducing headphones in the classroom or playground. The sensory profile associated with autism is complex including being overly sensitive to external sensory experiences such as sounds, lighting, touch, and smell, but lacking sensitivity to internal sensory experiences such as needing to use the toilet, hunger, and body temperature. Occupational Therapists have developed sensory assessment questionnaires for parents and teachers and strategies to moderate sensory sensitivity such as Sensory Integration and Processing Therapy.

An autistic child or adult lives in a world of terrifying sensory experiences and may have discovered a coping mechanism of being mesmerised by a repetitive action or sensation that ‘blocks’ the aversive sensory experience. 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.”

The sensory profile associated with autism can also include craving specific sensory experiences, often avidly mouthing, touching, sniffing, or spinning objects.  The experience is perceived as enjoyable but can be distracting and disruptive in a school or community setting. Sensory Integration and Processing Therapy may also help with this type of challenging behaviour.

Regulating emotions

From early infancy, an autistic child or adult may be notorious for having intense anxiety, anger, or sadness, that seems to be an ‘on/off light switch of brilliant light rather than a gradually increasing dimmer switch. When extremely distressed the autistic child or adult is not responsive to reason, distraction, or compassion. There can be a meltdown that is outwardly directed and an energy explosion, or inwardly directed implosion. We are developing strategies for a meltdown that include a parent, teacher or caregiver not interrogating the autistic person as to why they are distressed, nor becoming emotional -especially expressing anger or affection and focusing on punishment and consequences to end the meltdown. It is important to affirm and validate the emotion, confirm the feeling will eventually go, to keep other people away, and perhaps using a special interest as an ‘off switch’.

Nearly all autistic individuals have high levels of anxiety throughout their day and intense anxiety associated with specific situations. This includes anxiety created by change, transitions and the unexpected, as well as the anticipation of aversive sensory experiences and abandonment (separation anxiety). To cope with anxiety an autistic child or adult may become very controlling of others and events in their daily lives, being oppositional and not complying with simple requests. Another coping mechanism is developing routines and rituals as a calming mechanism or engaging in a favourite activity as a thought blocker. An alternative effective coping mechanism is an explosion or melt down to discharge the emotional energy and to reset emotion regulation. There are strategies for each type of coping mechanism that becomes a challenging behaviour due to anxiety that includes the concept of an ‘Emotional Toolbox’ with a range of tools to regulate emotions and emotional energy. This can include regular physical activities, encouraging relaxation and self-awareness using mindfulness, mediation, and Yoga. There are additional tools in terms of medication for anxiety and depression.

Movement disorders and medical factors

Autism is associated with dyspraxia, a range of involuntary tics and akathisia or motor restlessness. These movement disorders will affect daily living skills and motor coordination and potentially cause frustration, stress, and distress. Advice may be sought from an Occupational Therapist or Physiotherapist. There are also medical factors that may affect behaviour and abilities, such as epilepsy, auto-immune disorders and poor quality and duration of sleep. Thus, the management of challenging behaviour in classic autism requires a multi-disciplinary approach, an understanding of autism and the function of specific behaviours.