Tag Archives: asd

Exploring autism 1971-2021

Posted on by

Exploring autism 1971-2021

The historical context

Tony Graduating from The University of Hull in July 1973

Tony Graduating from The University of Hull in July 1973

In 1971, I had completed my first year studying psychology in England. During the summer vacation I became a volunteer at a special school in my hometown of Birmingham. It was at this special school that I first encountered autism as expressed by two young children. Russel was 7 years old and Sarah five years old. They were both agile and alert, but mute and preferred to engage in solitary play. Neither used gestural communication to replace their lack of speech and both were extremely sensitive to specific noises. They were frequently distressed by changes to their daily routine and the social, sensory, cognitive and communication experiences in the classroom and playground. They seemed in a world of their own, and other children were not invited into that world. However, I was determined to make a connection and to see the world from their perspective. Gradually and carefully, I became accepted, as a temporary but welcome visitor to their world.

The experience was profound emotionally and intellectually, and I decided that my career as a psychologist would be to explore and understand autism. In the autumn of 1971, I returned to University determined to read all I could on autism. There were only around a hundred published journal articles on autism, and perhaps two or three academic books and biographies written by parents of autistic children. Within a few weeks I had read all the relevant literature published in the English language. There are now over 7,000 journal articles on autism published each year and a corpus of research papers of over 70,000 studies of autism. Today I cannot keep up with the explosion of scientific knowledge on autism and tend to read the papers on the aspects of autism that intrigue me, and the papers of my colleagues and leading authorities on autism.

Changing concept of autism

In the early 1970s autism was conceptualized as an expression of schizophrenia that was caused by defective parenting and treatment was psychoanalysis of the child and their mother. However, during the late 1970s research studies and clinicians began to change this conceptualization to be replaced by autism being perceived as a neurodevelopmental disorder with a distinct profile of social, cognitive, linguistic, and sensory abilities that can be apparent in early infancy. This is the autism ‘signature’ that we seek in a diagnostic assessment and the core structure of our formal diagnostic instruments such as the Autism Diagnostic Observation Schedule or ADOS. My extensive experience as a diagnostician has led to supplementing the formal diagnostic instruments with activities to examine aspects of autism such as Theory of Mind abilities, the concept of self, alexithymia and interoception, and adaptations to autism that affect the clinical presentation and prognosis.

In the early 1970s our conceptualization of autism was that it was a rare but conspicuous and severe disability. The trajectory was for the child to attend a special school and eventually to be admitted to an institution due to high support needs in daily living skills and challenging behaviour.

During the 1980s we started to explore the range of expressions of autism and prognosis that included children and adults who were severely and conspicuously autistic in early childhood, but who acquired the ability to talk and converse fluently, had intellectual abilities in the average and above average range, and attended a typical school. They appeared destined to become independent of their parents and achieve full time employment and perhaps a long-term relationship. They had progressed to an expression of autism that was more subtle with a quite different prognosis. Lorna Wing in London recognized the progression in abilities to a profile consistent with the descriptions of autism by Hans Asperger in Austria rather than Leo Kanner in the United States. She first used the eponymous term Asperger’s syndrome in 1981 and her colleague and my PhD supervisor, Uta Frith, translated into English his original description of autism, based on the children he saw at his clinic in Vienna. I became a member of a small group of psychologists and psychiatrists in London exploring a new dimension of autism, Asperger’s syndrome. We discovered that there were children with the profile of abilities described by Hans Asperger that had never shown signs of severe autism in early childhood. There were two pathways to Asperger’s syndrome.

The original prevalence of autism was based on the conceptualization of a severe disability and was estimated at around one in 2,500 children. When we included Asperger’s syndrome in the autism spectrum and recognized the wide range of expressions of autism, the current prevalence according to the Centers for Disease Control in the USA is estimated to be around one in 54 children. Autism is becoming increasingly recognized by clinicians, schools, employers, and the public. A recent development is to have an autistic character in television programmes and films and there are many popular autobiographies written by autistic adults such as Temple Grandin.
There have been changes in terminology and diagnostic criteria over the last 50 years, as we increase our understanding of autism. The term Asperger’s syndrome has been replaced in the 2013 Diagnostic and Statistical Manual of Mental Disorders with the term Autism Spectrum Disorder Level 1. There are three levels of autism based on support needs. It is my opinion that we may change the terminology and diagnostic criteria, but the individuals remain the same in their daily challenges and abilities.

My recent research has included the design and development of screening instruments to identify the characteristics of autism in girls and women. The original gender ratio was 4 boys to each girl, but recent research indicates that the true ratio is 2:1. Girls and women can adapt to autism in ways that delay a diagnostic assessment.

Adaptations to autism

One of the central characteristics of autism, according to the DSM 5 diagnostic criteria, is a deficit in social communication and social interaction. The social and interpersonal aspects of life are a challenge to an autistic child or adult. So how does an autistic person adapt to these challenges? My extensive clinical experience suggests there are four potential adaptations based on personality and acquiring coping mechanisms: the introvert, the extrovert, the “camouflager”, and compensation.

The Introvert

The more easily recognized adaptation is that of the child who could be described as an introvert. The child, and subsequent the adult, actively minimizes or avoids social engagement, recognizing that social interactions are indecipherably complex, overwhelming, and stressful. This conspicuous adaptation, therefore, is to choose, where possible, to be alone to accomplish what you want to do without interruption, and not necessarily feeling lonely. The person’s energy is recharged in solitude, as being with people is at times bewildering and exhausting.

However, we are increasingly recognizing autistic children whose personality type is extrovert, being highly motivated to socialize. For these individuals, there are two potential adaptations that facilitate social engagement.

The Extrovert

The autistic extrovert actively seeks social engagement. Unfortunately, due to impaired ‘theory of mind,’ autistic children and adults have difficulties reading the subtle nonverbal communication used in a social interaction that regulate and moderate the fluency, reciprocity and intensity of social engagement. Unfortunately their social behavior may then be perceived as being intrusive, intense, or even irritating. A metaphor to describe this adaptation to autism is that of a driver who does not see the traffic signals (nonverbal communication) or abide by the traffic code (social conventions and context). They are unable to accurately read social situations and therefore criticized for behaving inappropriately.

While there is considerable motivation for social interaction and making friends, these experiences may nevertheless be ended prematurely by their peers. The consequence is that the autistic person feels bitterly disappointed that conversations, friendships, and relationships are short-lived, and social popularity remains elusive. When friendship is achieved, the autistic person can become possessive, idealizing their new friend with an intensity that is overwhelming. When the friendship or relationship ends, there can be intense despair and feelings of abandonment, betrayal, and of being misunderstood.

The Camouflager

The autistic “camouflager” is very aware of their difficulties in reading nonverbal communication and in making and keeping friends. With this insight, they are initially detached from their peers, but keenly observe their social interactions and the social behaviour of people in general. They seek to learn social ‘systems or rules and determine, interpret, and abide by those social rules. Their social abilities are achieved by intellectual analysis rather than intuition. Thus, effectively camouflaging their social difficulties. There is the creation of a social “mask.” We know that 70 per cent of ASD level 1 adults consistently use camouflaging in social situations. Research shows that autistic females tend to be better at camouflaging than males, and more likely to use this adaptation strategy in a wider range of social situations. However, some autistic males can use this adaptation.

The teenage autistic girl may have effectively camouflaged her autism, to “fly under the autism radar” and not have been considered for a diagnostic assessment with comments such as, “You’re too social to have autism.”. Every day at school (but probably not at home) she has acted the role of a typical schoolgirl, so much so that she should be awarded an Oscar for her social performance with her peers. She has a superficial sociability that is effective, but superficial and exhausting. She also has a lack of social identity, other than being the person that others expect her to be. Camouflaging can delay a diagnostic assessment for autism until the late teens or adult years which will also delay access to appropriate support and therapy.

There can be performance anxiety in social situations, as though she has been continually “on stage.” Like Cinderella at the ball, she can maintain the pretense for a while, but then becomes totally drained of mental energy and must return home to recover in solitude. She is likely to ruminate on her social performance in her bedroom and the high level of stress may evolve into an anxiety disorder or depression and self-harm.

The consequences of camouflaging autism can be a lack of knowledge of the inner and true self, with some adult women saying, “I don’t know who I am.” This may lead to a lack of self-identity, low self-esteem, and prolonged self-analysis. She recognizes that her friendships and relationships are based on deceit, where she has presented a “false” identity. This increases her feelings of deep inner loneliness. She yearns to find, and be able to be, her authentic self, but is aware that when her true self is revealed, she may be rejected and despised.

Psychotherapy needs to focus on the negative long-term consequences of camouflaging, encourage self-acceptance, and facilitate ways to explain the characteristics of autism to friends and colleagues so that others can accommodate and appreciate those characteristics to facilitate social acceptance and inclusion

Compensation

A fourth adaptation to autism is to create a lifestyle that minimizes the characteristics of autism. The autistic girl may prefer the company of boys, whose social dynamics are relatively simpler to decipher than girls. Boys may be more accommodating of someone who is socially clumsy, but who clearly enjoys and is relaxed in their company.

Compensation can also be achieved by developing an interest and talent in science, the arts and computer games, becoming an author, artist, musician, singer, multi-linguist, scientist and games designer. Social eccentricities are accepted and accommodated due to being valued by peers who recognize and admire a particular talent.

Another compensation strategy is to develop an interest in fictional heroes and superheroes and to have friendships based on shared interests, such as cosplay and Comic-Con, providing defined and recognized roles and achieving an alternative persona. The autistic girl may seek social assimilation by studying psychology and avidly reading books on body language and friendship or a career that does not involve much social engagement, such as becoming a wildlife ranger.

Other compensation strategies can include engaging in part-time schooling and employment to reduce the effects of exhaustion and having a social network of friends and colleagues who have autism—that is, people who accept and encourage the person’s autism. There is a much-valued sense of connection and authenticity.

Co-occurring conditions

We now recognise that there is an association between autism and anxiety, with approximately 80% of autistic children and adults feeling mildly anxious for much of their day, and for most of their life. They often experience intense anxiety in specific situations, such as when there are changes in routine or expectations, uncertainty in what to do or what is going to happen, fear of imperfection and making a mistake and specific sensory experiences. There can also be anxiety in crowded places such as a shopping mall on a Saturday. Research has confirmed that an anxiety disorder is the most common mental health problem for autistic adults. Sometimes, the level of anxiety experienced may be perceived as actually more disabling than the diagnostic characteristics of autism.

Research and clinical experience indicate that approximately one third of autistic adults experience cyclical feelings of sadness and pessimism that can evolve into a clinical depression. There are many reasons why an autistic person may become sad and depressed. These include feelings of social isolation, loneliness, and not being valued and understood by family members and colleagues. Another reason for depression is the exhaustion experienced due to socializing, trying to manage and often suppress emotions, especially anxiety, and coping with sensory sensitivity. The person is constantly alert, trying to endure perpetual anxiety whilst suffering a deficit in emotional resilience and confidence. The mental effort of intellectually analysing everyday interactions and experiences is draining, and mental energy depletion leads to thoughts and feelings of despair.

Recent research has explored the association between autism and alexithymia, that is the ability to recognize or describe one’s own thoughts and emotions. An autistic person will have genuine difficulty converting their thoughts and feelings into speech. When asked why they may have done something, or to describe their feelings regarding an event, they may simply reply, ‘I don’t know’. This is not their being obtuse or evasive, but an expression of a recognized difficulty with self-reflection and self-disclosure of inner thoughts and feelings through speech. Psychological therapy for mental health issues will need to accommodate the profile of abilities and experiences associated with autism, such as alexithymia, the lifetime experience of extensive bullying and teasing, and sensory sensitivity. We now have psychological therapy manuals specifically designed for adults who have autism and I have been able to contribute with my colleague Dr Michelle Garnett to many of the manuals and therapy programmes. We have designed and evaluated individual and group programmes for anxiety and depression, to build resilience to bullying and teasing, and acquire abilities in the areas from love and romance to employment.

There is increasing evidence that autism is associated with specific learning disorders such as dyslexia and hyperlexia, attention deficit hyperactivity disorder, intellectual disability, and specific language disorders. Thus, the diagnostic journey does not end with confirmation of autism. Conversely, the diagnostic journey for autism may start with the accurate diagnosis of another mental or personality disorder and a detailed developmental history indicates the presence of autism. Research and my own clinical experience suggest that around one in four patients with an eating disorder, substance abuse, gender dysphoria and borderline personality disorder have a dual diagnosis. There is also an association between autism and Tourette’s disorder, sleep disorders and bipolar disorders. Clinicians in all areas of psychology and psychiatry need to be aware of the characteristics of autism in a patient’s developmental history and profile of abilities. When the diagnosis is confirmed, adapt their psychotherapy to accommodate the autistic patient who has a different way of perceiving, thinking, learning, and relating compared to other patients.

While we acknowledge the concept of autism plus, we also acknowledge the concept of autism pure. Around 15 per cent of autistic adults have no additional diagnoses and they often have a different prognosis.

Long-term outcomes

Over 50 years I have been able to maintain contact with autistic children through to their mature years and see retired individuals for a diagnostic assessment. Those who have achieved a diagnosis of autism late in life are often greatly relieved to know why they are different and can now perceive their life through the lens of autism. The diagnosis can help explain why they were bullied and teased at school, their difficulties in making friends and maintaining a long-term relationship and sensory sensitivity.

The majority have described an improvement in their mental health after the age of 50, not necessarily by treatment from health professionals and medication, but discovering strategies themselves through reading, the Internet and experimentation. We are also now exploring the concept of well-being and autism and surveys and clinical experience suggest that wellbeing can be achieved by having time in the day when they are not disturbed within their own private sanctuary, being able to excel in what they enjoy doing, and freedom from sensory pain. These are all achievable.

In my extensive clinical experience, I have known autistic children who have what we describe as autism pure, with no signs of a mood, medical or psychological disorder. By their early twenties they have gradually acquired social abilities to make and keep friends and relationships and achieve successful employment and financial independence. The social puzzle is finally solved. They still have the characteristics of autism, but at a sub-clinical level according to the diagnostic criteria. I estimate that this occurs in about ten per cent of patients on my clinic list. I am prepared to remove the diagnosis of autism, but only with the patient’s agreement and for their benefit. Our new conceptualization of autism is that for a few autistic adults there may be a delay in acquiring specific abilities, not an eternal absence.

Finally, over 50 years I have contributed to the growing literature on autism for professionals, parents, and autistic adults. My original book Asperger’s Syndrome: A Guide for Parents and Professionals was published in 1998 and has sold over half a million copies and been translated into 30 languages. I continue to write guidebooks on autism and books on therapy for anxiety, depression and emotion expression and regulation. There are now hundreds of books published by Jessica Kingsley Publishers in London on many aspects of autism such as catatonia, having an autistic partner and coping with being in prison and aging and autism.

Recently I have been able to provide professional and parent training through live and recorded webinars. These webinars are available at www.attwoodandgarnettevents.com and are a way of passing on my evolving exploration and understanding of autism.

Adolescent autistic friendships

Posted on by

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

Posted on by

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

Posted on by

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

Posted on by

“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.

Autism in couples

Posted on by

Autism in couples

There are many qualities associated with autism that are appealing to a prospective partner. The person can be attentive, knowledgeable, creative, kind, endearingly immature, physically attractive, quiet, and inexperienced in romantic relationships. There can be compassion for their naive social abilities and having been teased and bullied at school. The prospective autistic partner is often appreciated for being predictable, honest, and confident in their opinions, perhaps with shared interests and an admired career. They may have similar characteristics to one of the parents of the neurotypical partner, such that they are easily fluent in the language and culture of autism. In the early stages of the relationship, the characteristics of autism may be suppressed such that the neurotypical partner is not be aware of their partner’s autism, anticipating a conventional and fulfilling relationship. If autism is recognised or disclosed, there may be the assumption that love will provide the mutual understanding and accommodations within the relationship.

Clinical experience and research have identified that both autistic males and females may develop a compensatory mechanism of camouflaging social and interpersonal difficulties in the early, romantic stage of the relationship.  They may have acquired what appears to be expertise in being an ideal partner from watching romantic films which have provided a script and a role that can be acted, and successful in captivating their partner. This ability to act neurotypical, to camouflage autism and use a variety of scripts and roles can also be used successfully at work and social settings with friends, becoming a ‘chameleon’, but in the privacy of home, their partner gradually experiences living with the real person behind the mask.

The autistic person may be attracted to someone who has exceptional social expertise and empathy for their social difficulties, understanding their confusion and sometimes being overwhelmed in social situations and the subsequent exhaustion and need for solitude.  The autistic partner may recognise that they need and actively seek a relationship partner who can be a social mentor and ‘translator’ of the autistic perspective to friends and family and does not criticise their partner for being social naïve or ‘clumsy’. They continue many of the social and emotional support functions previously provided by a parent.

After several years of living together, the couple may find that the relationship may not be developing as they originally expected. There may be a sense of grieving for the elusive conventional reciprocal relationship they once hoped for. For the neurotypical partner, autistic characteristics that were endearing at the start of the relationship, such as an being an avid collector of model trains, subsequently becomes a source of conflict regarding the amount of time and money devoted to the interest. The initial optimism that their partner will gradually change and become more emotionally supportive and socially skilled can dissolve into despair; social skills appear to be static due to limited motivation to be more sociable, or require constant prompting from their partner.

The autistic partner needs periods of social isolation at home to recover from the social aspects of work, and joint social contact with friends and family can slowly diminish. Gradually, the neurotypical partner reluctantly agrees to reduce the frequency and duration of social contact for the sake of their partner, and slowly absorbs the characteristics of autism into their own personality and lifestyle.

A significant problem for the neurotypical partner is a sense of loneliness within the relationship. In contrast, the autistic partner can be content with their own company for long periods of time – alone, but not lonely. Conversations from the perspective of the neurotypical partner can be infrequent and superficial, but from the perspective of the autistic partner, are satisfying, and primarily an exchange of information, rather than an enjoyment of each other’s company and sharing experiences.

There is an expectation in a relationship of regular expressions of love, affection, and emotional support. What may be missing in the autistic/neurotypical relationship are those daily words and gestures of affection and compassion and emotional support and compliments. The absence of these aspects of a relationship can be a contributory factor to low self-esteem and clinical depression for the neurotypical partner who feels caged within the relationship. Due to having autism, the autistic partner may not be able to recognise and know intuitively how to respond to the subtle non-verbal communication of emotional and practical needs, and can feel that whatever they say or do is never enough to make their partner feel happy. They unintentionally keep getting it wrong and feel excessively and unjustifiably criticized and rejected.

The ability to read subtle, non-verbal communication and contextual cues to determine what someone is thinking and feeling, Theory of Mind, is impaired for autistic children and adults. However, the neurotypical partner can have an impaired Theory of an Autistic Mind. That is,  they have difficulty perceiving or determining what the autistic person is thinking and feeling by reading their facial expression and body language; this is because autistic adults often have a limited ‘vocabulary’ of facial expressions, gestures, and prosody. Another characteristic of autism is alexithymia, that is, having considerable difficulty converting thoughts and emotions into conversational speech, which inhibits the disclosure of thoughts and feelings in a conversation. Thus, there is a breakdown in communicating and understanding each other’s thoughts and feelings for both partners.

The dynamics and stress within the relationship will inevitably change with the arrival of children, presenting new responsibilities and sources of conflict, such as different parenting styles. The relationship may reach breaking point. The autistic partner will have less access to their stress management strategies, such as solitude or their special interest, which is a source of pleasure, relaxation, and an effective thought blocker.  The relationship could be deteriorating, with expressions of despair and anger for both partners who are unaware of what to do to support and repair the relationship.

Over several decades Michelle Garnett and Tony Attwood have provided therapy for couples where one or both partners have the characteristics of autism. On the 20th of February 2021 we presented a whole day web cast on strategies to strengthen the relationship with modules on the:

Qualities of the relationship in the early stages

Signs that the relationship is not as anticipated for both partners

Expressions of love within the relationship

The communication of thoughts and emotions

Managing stress, anxiety, and anger

Verbal, emotional, and physical intimacy

Working as a team and family responsibilities

The future together

The webcast will also include a description of ‘The Relationship Minefield’ programme designed and used by Michelle, Tony and colleagues. For further information to download the web cast, please go to www.attwoodandgarnettevents.com

Managing an autistic meltdown

Posted on by

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.

Autism and catatonia

Posted on by

Autism and catatonia

Autism is often associated with hyper-activity, but a very small proportion of autistic adolescents and adults can develop signs of catatonia, that is having considerable difficulty initiating and completing movements. The DSM5 diagnostic criteria include reference to the association between autism and catatonia and we have only recently started to explore this unusual characteristic of autism.

The essential features of catatonia are:

Increased slowness of movement and verbal responses

Difficulty in initiating and completing actions

Increased reliance on physical or verbal prompting by others

Increased passivity and apparent lack of motivation

Other characteristics include:

Fixed facial expression

Freezing in unusual postures in the course of an activity

Walking without arm swinging

Moments of excited over-activity

The symptoms of catatonia usually start between 10 and 19 years and catatonia is usually episodic with relapses and remissions.

There is a deterioration of movement abilities with the person wanting to move his or her body, but the body does not respond. The severity can change within the day and spoken instructions have little effect. The person may need physical prompts, using gentle touch to guide them towards the desired action.

Catatonia in autism was originally described by Lorna Wing and Amitta Shah over 20 years ago and Amitta has a new book Catatonia, Shutdown and Breakdown in Autism: A Psycho-Ecological Approach published in London by Jessica Kingsley Publishers. It is the first comprehensive book to describe how to evaluate the many expressions of catatonia in autism and outlines an approach to alleviate the debilitating characteristics. Clinicians, families and autistic adolescents and adults will now have a much clearer idea of what to do.