Tag Archives: social

Signs of Autism when first meeting a client

Posted on by

Signs of Autism When First Meeting a Client

This blog is for clinicians, therapists, and counsellors to help identify the characteristics of autism in a client who has not previously been considered as autistic. We describe the signature characteristics of autism that may be apparent when first meeting a client or over several appointments when exploring their developmental history and profile of abilities. The blog is based on our extensive clinical experience and the formal diagnostic criteria for autism spectrum disorder (APA 2022).

Prevalence and pathways

According to the Centers for Disease Control and Prevention (CDC), the prevalence of autism in 2022 was estimated as one in 44 eight-year-old children. However, this is a conservative estimate, as many autistic adults camouflage and supress their autistic characteristics in social situations or choose a career that minimises the effects of autism, a form of compensation. Camouflaging and compensation may delay professional recognition of autism until the adult years.

There are many pathways for an autistic person to seek psychological, psychiatric, or mental health team support or counselling for career and relationship issues. We recognise that 79 per cent of autistic adults meet criteria for a psychiatric disorder at least once in their lives (Lever and Geurts 2016). The most common concerns are for high levels of anxiety and episodic depression. Other pathways are needing assessment and therapy for trauma, an eating disorder, borderline personality disorder, attention deficit disorder, gender dysphoria, addiction, and schizophrenia. There may also be issues regarding achieving and maintaining friendships, employment, or a long-term relationship. 

As the conversation with the client develops, the characteristics of autism may slowly emerge in their conversational abilities, social development, emotion communication, cognitive profile, ability to cope with change, interests, and sensory sensitivity.

Conversation abilities

The client’s conversation ability, while often demonstrating sophisticated vocabulary and depth of knowledge, may also include subtle difficulties with the pragmatic aspects of language, an unusual prosody, a tendency to make a literal interpretation, and difficulty with the comprehension and expression of nonverbal communication. The pragmatic aspects include the degree of reciprocity or ‘balance’ in the conversation: the person may talk too little or too much. When too little, there will need to be encouragement to say more than a few words in reply to a question and to provide some degree of elaboration and personal examples that illustrate a specific topic. When talking too much, the client’s conversation may be perceived as a one-sided monologue. There can be a difficulty in determining when the person has completed what they want to say, for example, failing to give eye-contact to indicate your turn to speak. In contrast, the client may frequently interrupt their conversation partner to make a comment or correct an error, oblivious of the signals not to interrupt, or that the person may be offended by the correction. 

There may also be difficulties knowing how to maintain and repair a conversation by seeking clarification and more information, as well as modifying language according to the social context. The client may also engage in too much or too little disclosure of personal or confidential information. 

Prosody may be unusual in terms of the speed, volume, rate, rhythm, and ‘melody’ of speech. There may be a lack of vocal tone and volume to indicate emotion and key words, and an unusual placement of stress and precise intonation. There can be a tendency to take a literal interpretation, which may become apparent when the other person uses idioms, sarcasm or ‘figures of speech’. 

One of the central characteristics of autism is a difficulty focusing on and reading nonverbal communication, which can become conspicuous during a conversation. There may be unusual aspects of eye-contact in terms of eye-contact frequency, duration, and ability to read another person’s facial expressions in order to modify the conversation. The person may be listening but not looking at the face of their conversation partner at key points in the interaction when eye-contact would not really be anticipated. One adaptation to autism is to appear to be looking at the person’s face, but instead focusing on their ears or forehead rather than their eyes, thus failing to determine what their conversation partner is thinking or feeling. And sometimes, even though there may be a focus specifically on someone’s eyes, there may still be difficulty reading facial expressions. As one autistic adult said, “People give messages with their eyes, and I don’t understand them.”

The difficulty reading nonverbal communication can occur for both conversation partners; the client’s facial expressions may be perceived as ‘still’ or ‘wooden’, and thus difficult to read. Their gestures may be limited or ‘stylised’, sometimes mimicking the gestures and posture of the conversation partner. There may be less use of nodding agreement, reciprocal smiles or complimentary sounds of compassion and interest. 

Social abilities

An exploration of social abilities and experiences may reveal difficulty making and keeping friends, delayed Theory of Mind abilities, a history of being bullied at school and work, and evidence of relatively effective but superficial social abilities. 

During childhood, there is likely to have been a time when the client first recognised that their social and friendship skills were not as advanced and complex as those of their peers. There may have been, and continue to be, a preference for solitary rather than social activities. During childhood and adolescence, there would have been a desire to establish and maintain friendships without a complete or realistic idea of what friendship entails. It is through extensive friendship experiences that we not only learn relationship skills, such as the art of compromise and conflict resolution, but also recognise the need for emotional as well as practical support. 

Theory of Mind is a psychological term to describe the capacity to understand and successfully relate to other people by determining what they may be thinking or feeling, and their mental state, knowledge, and intentions. This includes recognising that another person’s mental state may be different from one’s own. To develop Theory of Mind abilities, it is essential to be able to accurately read nonverbal communication and social context to infer someone’s thoughts and feelings and modify social behaviour accordingly. 

Many autistic adults have experienced rejection, humiliation and bullying from peers, especially in the high school years. Some of the incidents have been extremely distressing and traumatic. There is also an association between autism and all forms of abuse, which may lead to post traumatic shock disorder.

Social expressions of autism

A common perception of an autistic person is someone who considers social interactions as indecipherably complex, overwhelming and stressful, and chooses to be alone but does not necessarily feel lonely. However, there are autistic children and adults who are highly motivated to socially engage but may not be able to read the subtle social signals and social conventions of what to say and do. A metaphor to describe this expression of autism is that of a driver who does not see the traffic signals (nonverbal communication), or abide by the traffic code (social conventions). Their social behaviour may be perceived as intrusive or intense, such that the autistic person becomes bitterly disappointed that conversations, friendships and relationships are short lived. 

An adaptation to autism that creates the impression of social competence is for the person to acquire social abilities by supressing their autistic characteristics and instead observe, analyse, and imitate social behaviour, thus creating a social ‘mask’ and false persona. This adaptation may start in early childhood by avidly watching socially popular children, searching for patterns of social behaviour, and copying gestures, speech, interests, and topics of conversation. This adaptation is described as social ‘camouflaging’. 

Camouflaging requires the ability to suppress typically autistic behaviours, such as gently rocking to self-soothe, or talking excessively about a special interest, and instead appear interested in other people, making appropriate empathic gestures and comments: the creation of a social mask. While social success and acceptance may be achieved this way, the psychological cost is mental exhaustion in terms of being drained of mental energy by the effort of socialising. There is also the potential for the development of depression from energy depletion and the inability to express the authentic self.

During the initial conversation with the client, there may be the expected level of reciprocity and mutual reading of nonverbal communication. However, this may be due to their being very proficient and experienced in camouflaging their autistic characteristics. These abilities may have been achieved by intellectual analysis and practice rather than intuition. If the client has the autistic characteristics of difficulty coping with change, interests that are unusual in intensity or focus, and sensory sensitivity, it would be appropriate to compliment the client on their conversation and social skills, but also to ask how such social proficiency was achieved. An autistic client would describe using a range of sources of social information including observing, analysing and copying peers, watching television programmes (especially soap operas) to memorise scripts and responses, and seeking information on reading nonverbal communication and the art of conversation from literature, apps and YouTube. They may also rehearse their social and conversation scripts, or have a family member who provides social guidance.

Another social adaptation or compensation for autism during childhood is for autistic girls to prefer the company of boys, since their social dynamics are relatively simpler. They may feel safer and less likely to be bullied by boys, who often enjoy playing with a ‘tomboy’. An autistic adult may compensate by choosing a career that does not require much social engagement, such as a wildlife ranger; or they may develop an interest and talent in the arts, becoming an author, artist, musician, singer, or multi-linguist. Social eccentricities may be accepted and accommodated due to being valued by peers who recognise and admire a particular talent.

Emotion communication

Autism is associated with alexithymia, that is, the inability to focus attention on, recognise and accurately appraise, describe and moderate subjective emotions and body sensations, and then communicate those thoughts, sensations and emotions in words. Alexithymia is not exclusive to autism or a characteristic of all autistic adults but has been identified in at least 50 per cent of autistic adults, and in only 5 per cent of the general population (Kinnaird, Stewart & Tchanturia, 2019). Having alexithymia leads to a difficulty recognising internal emotional states, such that when asked ‘What are you feeling now?’, after some conscious thought, the reply may be, ‘I don’t know’. This is not being obtuse or evasive. There can be a genuine difficulty perceiving and converting internal states and emotions into speech. The full answer to the question would be, ‘I don’t know… how to mentally grasp the intangible emotions swirling in my mind, identify and label them accurately and communicate those feelings in speech so that you will understand’.

Another characteristic of alexithymia is to talk about experiences without reference to the emotional states of themselves and others. There is less spontaneous mention of emotions in conversation. This will affect autobiographical memory, such that an important event may be described primarily by the sequence of actions, rather than by the thoughts, feelings and intentions of others or themselves.

However, an autistic person is not oblivious to the emotional state of others, and may in fact be overly sensitive to another person’s negative mood. There appears to be a ‘sixth sense’ perception of someone’s anxiety, sadness or anger, which can lead to avoidance of some social situations or specific people due to the risk of being ‘infected’ by their distress, and being unsure how to help them. 

Having difficulty identifying and communicating internal emotional states can result in emotions increasing in intensity without sufficient cognitive evaluation and regulation, eventually leading to these emotions being released explosively as a meltdown. The developmental history and current concerns may include emotional meltdowns that are explosions of anger and anxiety, or implosions of intense despair and suicidal ideation.

Cognitive abilities

Autism is a different way of perceiving and learning, and this can lead to a cognitive profile that includes an ability to perceive and develop systems and patterns, and also to identify errors and detail that may not be recognised by others. There can also be an ability to store and recall information, and to find solutions to problems that are elusive to colleagues or employers. This may lead to a successful career as a recognised expert in a particular career or profession.

Ability to cope with change

The diagnostic criteria refer to distress at small changes and coping with uncertainty, as well as a tendency to insist on sameness and a preference for routines and consistency. For an autistic adult, variety is not the ‘spice of life.’ 

Interests and talents

Throughout childhood and into the adult years there is a history of hobbies or interests that are unusual in intensity or focus. Each interest has a ‘use by date’ that may range from hours to decades. The interests are associated with intense enjoyment and may also function as a thought blocker for anxiety or sadness. They also provide a sense of identity and social connection with those who share the same interest. 

During conversation, the client may be somewhat subdued and quiet, appearing to be reluctant to engage. However, when the topic of conversation is the person’s interest, they suddenly become enlivened, engaged and eager to disclose their expertise: almost an alternative persona.

While alexithymia is a difficulty converting thoughts and feelings into speech, a successful adaption to alexithymia is to express thoughts and feelings through the arts. The autistic adult may have a recognised talent as an artist, musician, composer, or author. The inner world is vividly expressed through the arts.

There may be a talent in the caring professions, especially psychology and psychiatry. The propensity from childhood to observe and analyse others to facilitate social engagement may evolve into achieving formal qualifications and a successful career as a teacher, therapist, psychologist, paediatrician, or psychiatrist. Autism is often associated with the altruistic desire help alleviate suffering and increase knowledge and abilities. There may also be a talent understand and caring for animals.

Sensory sensitivity

There can be an extraordinary perception of sensory experiences from the outside world, or ‘exteroception’. Specific sounds, types of lighting, tactile experiences, aromas, and emotional states of others can be perceived at such an intensity that the experience is aversive. In contrast, there can be difficulty sensing the internal world, or ‘interoception’. There appears to be a mind and body disconnection. The autistic person may not experience hunger or thirst to the same degree as other people, and may not be aware of the increasing heart rate and breathing that indicate rising anxiety or anger.

Screening for autism and recommending a formal diagnostic assessment

At the end of the first consultation, or after several consultations, some, but not necessarily all of the signs of autism may gradually become apparent. The next stage is to consider asking the client to complete screening questionnaires specifically designed to identify the characteristics of autism in an adult. These include the Autism Social Quotient (Baron-Cohen et al 2001) for men and women, and the GQ-ASD for women (Brown et al 2020). If their scores on these instruments are above the designated cut off, then a referral or subsequent appointment for a formal diagnostic assessment is warranted. 

References

APA (2022) Diagnostic and Statistical Manual of Mental Disorders-5 Text Revision. American Psychiatric Association 

Baron-Cohen et al (2001) Journal of Autism and Developmental Disorders 31 5-17 Available on the Internet at www.autismresearchcentre.com/research

Brown et al (2020) Autism in Adulthood 2, 216-226 Available to download at www.tonyattwood.com.au forms and questionnaires

Kinnaird, Stewart & Tchanturia (2019) European Psychiatry 55, 80-89

Lever and Geurts (2016) Journal of Autism and Developmental Disorders 46: 1916-1930

Recognising and Understanding Autistic Girls* at School

Posted on by

Recognising and Understanding Autistic Girls* at School

Most children referred for a diagnostic assessment for autism are males, and autistic males with fluent speech will likely be diagnosed, on average, by the time they are 8 years old. Autistic girls, by contrast, ‘fly under the radar’ and tend to be diagnosed during their teenage or adult years . In a recent research study, the male-to-female ratio of autism was 1:4. in 4–10-year-olds, leaping to 1:2. in adult women (Posserud et al, 2021). Our own clinical records for diagnostic assessments show the same pattern, , Thus, young autistic girls and teenagers are not being identified , and so they are missing out on valuable, accurate and timely understanding and support. This article discusses how to recognise their profile at school.

Why do Autistic Girls often Fly Under the Radar?

Many autistic girls remain undiscovered because the signs of autism are less obvious than they are with boys. Why is this the case? In autism, understanding the social world does not happen innately or intuitively. Autistic children and adolescents cope with this difficulty in different ways. One strategy is to use ‘camouflaging’ to hide autistic characteristics. To successfully camouflage, the person will watch others closely to understand how to act and what to say in social situations. They will imitate others, develop scripts, practise at home, and adopt masks and personas to be able to manage social situations. Research suggests that autistic females camouflage more than males, and they camouflage to fit in socially at school and avoid being bullied (Cook et al, 2021).
Also, some autistic girls can be more motivated than autistic boys to conform and to fit in socially at school and are likely to be well -behaved, less disruptive, and so less likely to be noticed. They may have learned that if they are good, they will be left alone and if they are quiet, no one will see them, making it less likely they will come to the attention of their teachers.
Informed parents may consider that their daughter is autistic, but if the profile is not apparent either in the clinic during the diagnostic assessment, or at school, she is likely not to be diagnosed as being autistic. Additionally, teachers will not approach parents with concern that a girl may be autistic if they do not pick up the profile in the classroom. Research shows that autistic women often receive mental health diagnoses prior to a diagnosis of autism (Hamdani et al, 2023).

What to Know about Autistic Girls

Every autistic girl is unique, and her needs will be reflected differently. School staff should be cautious not to run the risk of overgeneralising since autistic students can be as different from each other as any other students. Despite this, there is a recognisable profile of autism in girls that we will describe here with the hope that increased recognition will lead to earlier support and understanding.

Unlike most autistic boys, girls are more likely to be able to accurately interpret and answer questions about social interactions, social situations, and friendship. However, their responses may not come naturally or as quickly, making it difficult for them to keep up in group settings or with the conversation of many non-autistic girls. They may discover that boys are more like-minded friends since their friendship dynamics may be perceived as being easier to understand. 

Rule Driven

Autistic girls are likely to strictly adhere to classroom rules and routines, these can be other’s rules and routines or their own. From an early age, autistic girls have applied their cognitive skills to analyse social interactions, and so they are much more likely than autistic boys to discuss the inconsistencies of social conventions and to be enforcers of social justice (e.g. fairness). If they are strongly motivated to abide by the classroom rules and also have a tendency to be shy, naïve and unassuming, they can easily be missed in a classroom of boisterous children. Autistic girls can also be very hesitant to ask for help for fear of drawing attention and strong perfectionism where she doesn’t want to get things wrong or be seen as ‘silly’ by teachers or peers. 

Strong Interests

Because autistic girls may focus much of their intellectual energy on learning about their social world, their interests often centre on social topics, such as animals, especially cats and horses, psychology, friends, a particular person, including celebrities, also literature and fantasy. It is not so much the topic that differs from non-autistic girls; rather, it is the intensity of their interest. Often, she will have a rich imaginary world where she may engage in elaborate doll play using a script to re-enact real events, which may help decode social situations. Their tendency to follow scripts and their difficulties with social reciprocity may put them at odds with peers who may not want to follow her script and find her too controlling. She will not easily read social cues to know what to do, or to know how to predict people’s behaviour. Thus, autistic girls may have trouble recognising and managing conflict, affecting their ability to repair and maintain friendships.

High Levels of Anxiety

Despite their frequently better coping mechanism and ability to camouflage their social difficulties, these social difficulties are very real and cause enormous stress and confusion. The social challenges and sensory difficulties experienced by autistic girls can have a significant impact on their wellbeing, leading to high levels of anxiety in the classroom and playground. Signs of high anxiety at school include:

  • school avoidance and refusal, choosing to visit the school health centre frequently.
  • becoming overwhelmed (going quiet) in social situations; appearing shy.
  • being reluctant to participate in class activities.
  • being unable to communicate verbally (situational mutism).
  • feeling they are consistently judged negatively by their peers.
  • withdrawal from social interaction and sitting in the library at lunchtime instead.
  • somatic complaints including low energy, headache, stomach-ache, chest pain and tiredness.

Dr Jekyl and Mr Hyde

Due to camouflaging, the autistic girl’s socialising appears normative to non-autistic girls and teachers, and she can successfully ‘keep it together’ at school. An autistic girl may be able to do such a great job at wearing the mask and fitting in that nobody apart from her parents would believe she is autistic. However, the toll that this effort takes on her energy levels and emotions is high. Girls will often come home feeling exhausted, irritable, and overly emotional. She can ‘meltdown’ or ‘shutdown’ the moment she is out of the school situation and parents are at a loss as to how to assist their daughter, where afternoons after school are characterised by tears, tantrums, “rude behaviour,” social avoidance, and arguments. It is not uncommon for parents to experience blame from professionals because the visible challenges occur only in the home situation.

The Profile of the Autistic Girl in the Classroom

Below is an outline of some of the common difficulties autistic girls face at school to assist teachers to recognise the profile:

  • May appear shy, rude, lazy or ‘odd.’ 
  • May have slower information processing for social and emotional information, resulting in a time delay in their responses.
  • Shows difficulty putting their thoughts and feelings into words and difficulty expressing their wants and needs.
  • Has executive function challenges, for e.g. difficulties with planning and organising their time, belongings and behaviour.
  • Has sensory issues, e.g. for bright lights, certain noises, odours such as perfume. These may not be overtly apparent due to masking.
  • Social difficulties are apparent in subtle ways, for e.g. dislikes group projects, will not ask for help, goes to the library at lunchtime, does not have a best friend or only has one friend and is lost if that friend is not at school or moves between groups of friends but does not seem to belong to one group, prefers boys as friends.
  • Seems more stressed during transitions between classes and at the start and end of the day. 
  • Is overly reactive for seemingly small things, for e.g. change in familiar classroom routines.
  • Is very good at art, singing, languages and/or reading.
  • Has a strong sense of social justice.
  • Maybe perfectionistic but disorganised for some tasks.
  • Tends toward black and white thinking.
  • May be gender fluid or dysphoric.
  • May be a tomboy.
  • Can have a literal interpretation of language.
  • Is extremely empathic and sensitive.

*NB: Wherever gender is referred to, we are referring to the gender assigned at birth.

References

Cook J, Hull L, Crane L, Mandy W. Camouflaging in autism: A systematic review. Clin Psychol Rev. 2021 Nov;89:102080. doi: 10.1016/j.cpr.2021.102080. Epub 2021 Sep 6. PMID: 34563942.

Hamdani Y, Kassee C, Walker M, Lunsky Y, Gladstone B, Sawyer A, Ameis SH, Desarkar P, Szatmari P, Lai MC. Roadblocks and detours on pathways to a clinical diagnosis of autism for girls and women: A qualitative secondary analysis. Womens Health (Lond). 2023 Jan-Dec;19:17455057231163761. doi: 10.1177/17455057231163761. PMID: 36999318; PMCID: PMC10071154.

Posserud, M-B, Skretting Solberg, B, Engeland, A, Haavik, J, Klungsøyr, K. Male to female ratios in autism spectrum disorders by age, intellectual disability and attention-deficit/hyperactivity disorder. Acta Psychiatr Scand. 2021; 144: 635– 646. https://doi.org/10.1111/acps.13368

Autism in Couple Relationships

Posted on by

Autism in Couple Relationships

Part of the early appeal of dating an autistic person for a person who is not autistic can be a sense that they are different that they have a mind that can grasp astonishing complexity, they are wonderfully attentive, have deep compassion, are fair-minded, are very talented in their field, extremely loyal or different in ways that are intriguing but not yet fully apparent. Indeed the early stages of dating may not indicate the long-term relationship issues that can occur. On both sides, there can be expectations of how a long-term relationship “should” be, each informed by their own culture or way of thinking. We have learned through our vast clinical experience that approaching relationships between autistic and non-autistic individuals can be likened to a cultural exchange programme, where there needs to be understanding and acceptance of each person’s culture for the relationship to succeed. Certainly, this is true in all relationships but it plays out more significantly when one partner in the relationship is autistic.

The early stages of dating may not indicate the long-term relationship issues associated with autism. The autistic partner may have initially camouflaged and suppressed their autistic characteristics to be more attractive to a non-autistic partner. They may have acquired a dating ‘script’ from watching romantic movies and created a ‘mask’ or artificial persona. However, gradually the mask is removed, and it becomes apparent that the autistic partner does not intuitively know long-term relationship skills.

Theory of Mind

Some of the issues in the relationship can be due to aspects of ‘Theory of Mind’, a psychological term that describes the ability to read facial expressions, body language, tone of voice and social context to determine what someone is thinking or feeling. Both partners experience this. We have known for some decades that autism is associated with Theory of Mind difficulties, and these are part of the diagnostic criteria. However, the non-autistic partner can also have difficulty ‘reading’ the inner thoughts and feelings of their autistic partner. This is described as the Double Empathy issue (Milton, 2012). The autistic partner may not express subtle emotions in facial expressions, tone of voice and body language.

In a conversation, the autistic partner can struggle to find the words to express thoughts and feelings due to aspects of interoception and alexithymia. That is the sensory perception of the body signals that indicate emotional states such as heart rate and breathing (interoception) and being able to translate the emotions that you feel or remember into speech (alexithymia). This will affect the ability of the autistic person to disclose their inner world and communicate their feelings. As the relationship progresses, the non-autistic partner will anticipate increasing self-disclosure as a sign of the depth of the relationship and trust. The non-autistic partner must recognise that their autistic partner has genuine difficulty perceiving and communicating their inner world.

Social engagement

Autistic adults can achieve successful social engagement, but this may be by intellect rather than intuition and often with social guidance from the non-autistic partner. Social occasions are mentally exhausting and energy-draining. In contrast, the non-autistic partner may find that social experiences require little mental energy and may create energy. The non-autistic partner may reluctantly agree to reduce the frequency and duration of social contact with family, friends, and colleagues for the sake of the relationship but feel deprived of experiences they enjoy.

The non-autistic partner may also recognise that their autistic partner can engage socially at work but, on returning home, is exhausted and actively seeks solitude or engagement in a hobby or interest as a means of energy recovery. Although the couple lives together, the autistic partner has a diminishing need for social, conversational and leisure time together. An issue for the non-autistic partner is feeling lonely within the relationship.

Communication

One of the consequences of difficulties with Theory of Mind abilities is misinterpreting intentions, such as determining whether a comment or action was deliberately malicious, humorous or benign. This can lead to conflict within the relationship, with either partner being quick to take offence.

Another communication issue is a tendency for the autistic partner to be perceived as overly critical and correcting and rarely providing compliments. They intend to improve their partner’s proficiency and anticipate gratitude for their advice, being unaware of the effect on their partner’s self-esteem. There may also be a reluctance to provide compliments due to not intuitively knowing that in a relationship, the non-autistic partner need for regular approval and admiration and reluctance to give a compliment when their partner is already aware of their achievement.

As the non-autistic partner describes their daily experiences, their autistic partner may not engage in the anticipated degree of eye contact and words, sounds, and gestures of compassion and interest. The autistic partner absorbs the story but does not appear attentive and is eager to provide practical advice rather than non-judgemental listening and empathy. The non-autistic partner can feel they lack emotional support but experience considerable practical advice.

Expressions of love and affection

In a conventional relationship, regular expressions of love and affection are expected. A metaphor for the need and capacity for expressions of love and affection can be that a non-autistic partner has a ‘bucket’ capacity for love and affection that needs to be regularly filled and replenished. In contrast, an autistic partner has an affection ‘cup’ capacity that is quickly filled. The autistic partner may be perceived as not expressing sufficient affection to meet the needs of his or her partner, who feels affection deprived and unloved, which can contribute to low self-esteem and depression.

When the autistic partner recognises the value of expressions of love and affection in the relationship, there can be the issue of the frequency, type, intensity and duration of expressions of love and affection. As an autistic partner said: ‘We feel and show affection but not enough and at the wrong intensity’ and “I know I am not meeting her needs, but I don’t see them, will I ever be able to make my partner happy”. A non-autistic partner gradually realised that “…he can’t give me my needs because he doesn’t see them, he doesn’t perceive them and doesn’t ask about them… I often feel alone in our relationship because he’s not quite with me” (Smith et al., 2021)

Emotion repair

During personal distress, when expressions of empathy and words and gestures of affection would be expected as an emotional restorative, the autistic partner may not read the signals to elicit emotion repair (Theory of Mind) or know and have confidence in what to do. Their emotional repair mechanisms may be solitude and engaging in their interests and hobbies as a thought blocker. Affection may not be perceived as an emotion repair mechanism, with a hug perceived as an uncomfortable squeeze which does not automatically make them feel better. A typical comment of the non-autistic partner is that hugging their autistic partner is like ‘hugging a piece of wood’. The person does not relax and enjoy such close physical proximity and touch.

Being alone is often the primary emotional repair mechanism for an autistic partner, and they may assume that is also the case for their non-autistic partner, with the thought that if I leave her alone, she will get over it quicker. They may also not know how to respond or fear making the situation worse, as in the relationship counselling session where an autistic partner sat next to his wife, who was in tears. He remained still and offered no words or gestures of affection for emotional repair. When asked if he knew his wife was crying, he replied, “Yes, but I didn’t want to do the wrong thing.”

The autistic partner can be accused of being callous, emotionally cold and lacking empathy due to a genuine difficulty reading interpersonal signals and knowing how to respond. The non-autistic partner gradually realises that they need to be very clear and direct in expressing their feelings and suggesting to their partner what they need to do for emotion repair.

Intimacy

There may be issues associated with verbal, emotional and physical intimacy. The effects of alexithymia will inhibit verbal and emotional intimacy, that is, converting thoughts and feelings into speech. However, an autistic partner may be able to express their thoughts and feelings indirectly using music, poetry, a scene from a movie, a passage in a book or typing rather than speaking their thoughts and feelings.

Sensory sensitivity may affect physical intimacy, leading to confusion, distress, and frustration with sexual experiences for an autistic partner (Gray et al., 2021). Autism is associated with a low or high threshold for sensory experiences, especially tactile experiences. A low threshold can lead to experiencing discomfort or pain when lightly touched during moments of intimacy. A high threshold can lead to requiring greater physical stimulation, as in the comment from the Gray et al. research paper, “I am not particularly sensitive, so I need more friction to achieve orgasm”. There may also be the issue of the use of drugs and alcohol, as in another comment from the same research study. Only when I am drunk do I feel comfortable being touched or touching others.

There can be issues with the frequency and quality of physical intimacy, which influences sexual satisfaction (Boling, 2016). Sex can become an intellectual interest for an autistic partner in acquiring information on sexual diversity and activities, often from pornography, and sex may function as a means of self-calming and emotion regulation. This was described by one of the participants in the Gray et al. (2021) study “I went through this highly sexualised phase because I just loved the way orgasms made me feel and connected me to myself and centred me. It was like the best self-regulation strategy I had found” The desire for and frequency of sexual activities and experiences may not be reciprocated by the non-autistic partner.

However, from our extensive clinical experience, the non-autistic partner is more likely to be concerned about the lack of sexual desire rather than an excess. The autistic partner may become asexual once he or she has children. In a relationship counselling session, the partner of an autistic man was visibly distressed when announcing that she and her husband had not had sex for over a year. Her autistic husband appeared confused and asked, “Why would you want sex when we have enough children?”

Partnership

In modern Western society, we have replaced the word husband or wife with the word partner. This reflects changing attitudes towards long-term relationships. There is an expectation of sharing the workload at home, for domestic chores and caring for the children, and being each other’s best friend regarding the disclosure of thoughts and feelings, reciprocal conversation, sharing experiences and emotional support. Taking on the role of a best friend is not easy for an autistic partner to achieve due to having lifelong difficulties making and maintaining friendships.

For those autistic adults who have problems with executive function, that is, organisational and time management abilities, distractibility and prioritisation, procrastination and completing tasks, the non-autistic partner often takes responsibility for the family finances, ensuring jobs are completed and resolving the organisational and interpersonal problems that have developed in their partner’s work situation. The non-autistic partner takes on the executive secretary/ mother role, frequently prompting their partner on what to do (Wilson et al., 2014). This aspect of the relationship adds to the stress and responsibility of the non-autistic partner and can be a source of conflict in the relationship.

Conflict management

In any relationship, there will inevitably be areas of disagreement and conflict, such as having different parenting styles. Unfortunately, autism is associated with a developmental history of limited ability to manage conflict successfully. The autistic partner may not be skilled in negotiation, accepting alternative perspectives, agreeing to compromise, and the art of apology and may tend to hold and ruminate over grudges. This can be due to difficulty with understanding the thoughts, feelings and perspectives of others, a central characteristic of autism and limited experiences of childhood and adolescent friendships where these abilities are practised. Effectiveness in resolving conflict is a factor in relationship satisfaction for both the autistic and non-autistic partner (Bolling, 2016).

Emotion management

Autism is associated with experiencing strong emotions, especially anxiety, anger and despair and difficulty coping with stress at work and home. (Attwood 2006). There may be issues in the relationship regarding anxiety because the autistic partner can be very controlling, and life for the whole family is based on rigid routines and predictable events. There may be concerns regarding anger management and the risk of physical and psychological abuse (Arad et al., 2022), and both partners may be vulnerable to being depressed (Arad et al., 2022; Gotham et al., 2015). The relationship may benefit from assessing specific mood disorders and appropriate treatment and professional support.

Mental and physical health

Surveys of the mental and physical health of couples where one partner is autistic indicate that the relationship has very different health effects for each partner (Arad et al., 2022; Aston, 2003). Most autistic male partners considered that their mental and physical health had significantly improved due to the relationship. They stated they felt less stressed and would prefer to be in the relationship than alone.

In contrast, most non-autistic partners stated that their mental health had significantly deteriorated due to the relationship. They felt emotionally exhausted and neglected, and many reported signs of clinical depression (Lewis, 2017). A sense of grief may be associated with losing the hoped-for relationship, as illustrated by the comment, “It’s not only what I’ve lost, it’s what I’ve never had… (Millar-Powell & Warburton, 2020). Most non-autistic survey respondents also stated that the stress associated with the relationship had contributed to a deterioration in physical health.

Thus, we increasingly recognise the potential benefits of couples engaging in relationship support and counselling, which focuses on assisting their clients in identifying each other’s needs and how best to meet them (Yew et al., 2023).

References

Arad, Schectman and Attwood (2022). Journal of Psychology and Psychotherapy 12

Aston (2003) Asperger’s in Love: Couple Relationships and Family Affairs London, Jessica Kingsley Publishers.

Attwood, T. (2006). The Complete Guide to Asperger’s Syndrome London, Jessica Kingsley Publishers.

Bolling (2026) Asperger’s Syndrome/Autism Spectrum Disorder and marital satisfaction: a quantitative study Antioch University, New England.

Gotham, Unruh and Lord (2015). Autism 19

Gray, Kirby & Holmes (2021). Autism in Adulthood 3

Lewis (2017) Journal of Marital and Family Therapy 43

Millar-Powell and Warburton (2020). Journal of Relationship Research 11

Milton, D. (2012.) Disability and Society 27

Smith et al., (2021) Journal of Autism and Developmental Disorders 51

Wilson, Beamish, Hay & Attwood (2014). Journal of Relationship Research 5

Yew, Hooley & Stokes (2023). Autism in press.

Autism and Substance Addiction

Posted on by

Autism and Substance Abuse

We have seen an increasing number of autistic adolescents and adults with signs of substance addiction, usually alcohol but also illegal substances such as marijuana, amphetamines and opiates and the misuse of prescription medication such as benzodiazepines. Why are autistic individuals at risk of developing substance addiction? The simple explanation is to engage or escape reality and moderate intense emotions.

Engage reality

A fundamental characteristic of autism is difficulty socialising and subsequent social anxiety. Alcohol and marijuana can be used as a relaxant in social situations. The autistic person may find socialising easier when mildly intoxicated, with a sense of calmness and competence. An autistic adult explained Alcohol makes verbal communication easier (Brosnan & Adams, 2020). Unfortunately, the autistic person may depend on these substances to facilitate social engagement. An autistic adult explained: Alcohol is relaxing and provides happiness, and another autistic adult said that alcohol is A central solvent that my body chemistry has been missing. Alcohol is my cure for anxiety. Marijuana can have similar effects I smoke pot to make my anxiety and autism go away. It’s the only time I feel on the same wavelength as everyone else (Weir et al., 2021).

At the end of the working day, when a non-autistic person is exhausted and stressed, they may seek energy replenishment and relieve their tension via compassion, gestures of affection and conversation from a supportive person in their life. These interpersonal energy and emotion repair mechanisms may be less effective for an autistic person. Alcohol may be their preferred means of relaxation, and a daily routine of alcohol consumption becomes established.

Another characteristic of autism in adolescence is the tendency to be rejected by peers, engendering feelings of a lack of connection and 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 in a sub-culture composed of others who also do not fit into conventional society. This group accepts those who are not popular. This sub-culture has clear rules and expectations regarding 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 colludes with group members to acquire mood-altering substances, and the autistic group member avidly acquires knowledge on drugs from the Internet and becomes the respected expert for members of the group to consult on drug effects, dosage and interactions.

Many autistic adolescents and adults have extreme anxiety levels and describe trying to cope with racing thoughts, which are difficult to slow down, and ruminations, which are extremely difficult to block. Alcohol and drugs especially opiates and marijuana, can decelerate thoughts that are speeding out of control and block ruminations. 

Some medications prescribed to reduce anxiety, such as benzodiazepines, can themselves become addictive after several months, with the person developing increased tolerance, impaired cognitive abilities, memory problems and mood swings. There can also be a dangerous misuse of other prescription medications and substances as the person self-medicates for anxiety, with the potential for hazardous drug interactions and the very real danger of accidental overdose. There is also the risk of conflict with the law and entry into the Criminal Justice System (Attwood, 2019).

Another contributory factor for an autistic person to maintain substance addiction is ADHD. We know that most autistic individuals also have signs of ADHD which can lead the autistic addict to be impulsive and not consider the long-term consequences of drugs on themselves and their family, and want almost instantaneous relief from intense and unbearable emotions, especially anxiety. Psychological emotion regulation strategies such as cognitive behaviour therapy, mindfulness and Yoga take time and effort.

There are high levels of unemployment associated with autism, leading to boredom, frustration and a sense of uselessness and under-achievement. Being part of the drug 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 meet people within the drug culture.

Escape reality

The use of mind-altering substances can provide a sense of protection, ‘anaesthetising’ the person from the effects of past trauma, such as being bullied or being the victim of emotional, physical, financial, or sexual abuse.  Being in an emotionally safe ‘bubble’ creates a sense of emotional detachment. An autistic addict described self-medication as an escape from pain and genuine relief.

Alcohol, marijuana and illegal drugs seem to suppress or ‘switch off’ the frontal lobes, the thinking part of the brain. Autistic individuals need their frontal lobes to efficiently process social information and cognitively moderate emotions. When intoxicated, an autistic person may increase their autistic characteristics and have impaired decision-making, affecting their quality of life.

Research on autism and substance addiction

Rengit et al. (2016) confirmed our clinical experience that substance use for autistic individuals often alleviates anxiety and inclusion in a subculture. The association with autism, ADHD and substance abuse was confirmed by Butwicka et al. (2017). The same study found that substance use-related problems have been observed among 19%-30% of adult autistic clients in general clinical settings. A study of consecutive intake assessments at a substance use disorder clinic for young adults using a screening instrument for autism found that 20% had autistic characteristics (McKowen et al., 2021). 

A systematic review of relevant research by Ressel et al. (2020) suggested that up to 36% of autistic individuals have co-occurring issues with substance abuse. An online survey of over 500 autistic adults found that the rate of heavy episodic drinking was 54%, with the rate in the non-autistic population being 17%. (Brosnan and Adams 2020). The strongest motivations were for social reasons and to enhance positive feelings, and 45% indicated they would not seek support for their substance use, with barriers to support including that it would occur in an unfamiliar chaotic environment and anticipating being misunderstood and judged by rehabilitation staff.

What to do when there are signs of addiction

The first stage is to recognise the addiction, which may affect mental and physical health and family dynamics and potentially lead 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 recognise their inability to cope without mind-altering substances. If there is recognition of the addiction, there nevertheless may be resistance to reducing the level of substances or engagement in the drug culture, as the person may not be able to conceptualise life without their support in regulating emotions and disengaging from the drug culture. The idea of ‘kicking the habit’ can be frightening because it involves the unknown and trusting the effectiveness of alternative emotion management and social engagement strategies.

The second stage is to address the dysfunctional use of substances. This may mean providing alternative prescribed and carefully administered, and supervised medication. Throughout this process, access to a clinical psychologist is beneficial to provide advice, treatment and support for anxiety management and fear of being able to cope without illegal or misuse of legal substances, to encourage the development of social skills, new social networks and a resilient sense of self.

While the diagnosis of autism may provide a rationalisation 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 autism; it is important that there is routine screening for autism in 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 autism.

Rehabilitation services often rely on social living and group therapy and provide limited personal space and solitude opportunities. An autistic client will benefit from a single room wherever possible. They will also need guidance and support in group therapy’s social and disclosure requirements due to the characteristics of alexithymia, that is, converting thoughts and feelings into conversational speech. In a rehabilitation service, reading social and interpersonal dynamics can be difficult for an autistic person as well as recognising social and personal boundaries, knowing when to talk and not 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 autistic characteristics and must make appropriate accommodations.

A study by Helverschou et al. (2019) found that typical interventions for treating addiction are often unsuitable for autistic adults. They recommended regular staff education on autism and accommodating the characteristics of autism in group sessions. The study also affirmed the perception of autistic participants in therapy as being drug experts and providing advice to staff and fellow residents on drug doses and combinations of drugs. The research also identified a tendency for autistic individuals to end their drug use their own way and not follow a recommended reduction plan.

Our clinical experience confirms that sometimes the autistic person can decide to end an addiction without a therapeutic plan and support. This takes great determination and relies on one of the characteristics of autism: once a decision has been made, the person is unwavering in seeking a resolution and the desired outcome.

A recent survey of over 100 drug and alcohol therapists’ perceptions of current service provision for autistic clients found that most therapists had received no autism-specific training, with alcohol misuse as the most common presenting issue, and most therapists reported that treatment outcomes were less favourable for autistic clients (Brosnan & Adams, 2022). They found an eclectic approach to be the most helpful and psychodynamic least helpful. Autistic clients tended to lack insight into the therapeutic process, were resistant to therapy suggestions, considered therapists as not understanding them or had inferior intellect. The authors recommend a range of therapeutic adaptations, such as using plain language, a more structured and concrete approach, shorter sessions and using hobbies and interests as part of therapy and more written and visual information.

The stress of group engagement, accepting treatment models, and staff not understanding autism can lead to premature voluntary discharge from residential rehabilitation services. The autistic person may become convinced that such services can never be effective. Rehabilitation services need to become more autism-friendly, and psychologists and psychiatrists need to develop an addiction treatment model specifically designed for the characteristics of autism and reasons for substance addiction in collaboration with autistic adults who are or were addicted to substances.

Once the addiction seemingly ends, there is still the risk of relapse. It is important for the autistic person 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 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 lifestyle and schedule of daily activities. Recovering from addiction is a long road, but the journey and destination may be lifesaving.

Resources

Jackson (2016). Sex, drugs and Asperger’s syndrome London, Jessica Kingsley Publishers

Kunreuther & Palmer (2018). Drinking, drug use and addiction in the autism community London, Jessica Kingsley Publishers

Regan (2015) Shorts: Stories about alcohol, Asperger syndrome and God  London, Jessica Kingsley Publishers

Tinsley & Hendrickx (2008). Asperger syndrome and alcohol: drinking to cope? London, Jessica Kingsley publishers

References

Attwood W.  (2019). Asperger’s Syndrome and Jail: A survival guide London, Jessica Kingsley Publishers

Brosnan & Adams (2020). Autism in Adulthood

Brosnan & Adams, (2022) Autism in Adulthood

Butwicka et al. (2017). Journal of Autism and Developmental Disorders

Helverschou et al. (2019) Substance Abuse: Research and Treatment

McKowen et al (2021) The American Journal of Addictions

Rengit et al. (2016) Journal of Autism and Developmental Disorders

Ressel et al. (2020) Autism

Weir et al. 2021 Lancet Psychiatry

How to create an autism-friendly home

Posted on by

How to create and autism-friendly home

Introduction

As parents get to know the profile of abilities and daily challenges of their autistic child, they make accommodations at home to create an autism-friendly environment. The central characteristics of autism include sensory sensitivity, need for times of solitude, social communication difficulties, engagement in a special interest and difficulty coping with change. Parents know that situations that are enjoyable for typical children can be stressful for an autistic child, such as having visitors to the home and making spontaneous decisions about activities for the day. There is also the likelihood of an autistic child having high levels of anxiety and being sensitive to the ‘emotional atmosphere at home. We will explore each of these characteristics of autism to affirm why the home of an autistic child may at times be different to the home of a non-autistic child.

Sensory sensitivity

Some sensory experiences are perceived as excruciatingly painful by autistic children. This can include sudden or ‘sharp’ noises such as a dog barking, the sound of electrical appliances, the type and intensity of natural and artificial lighting, tactile experiences such as seems and labels in clothing, the taste of some foods and the smell of cleaning products. Parents soon know which sensory experiences are aversive and recognise that for example, if their autistic child cannot tolerate the sound of a vacuum cleaner, to do the vacuuming when the child is at school or out of the house. They may also become aware of how auditory experiences during the night can cause an autistic child to wake up and adjust the child’s meals to accommodate sensory sensitivity associated with food. An occupational therapist may be able to provide advice on sensory sensitivity and adjustments that are needed at home.

Social experiences

Autistic children can enjoy social experiences, but social engagement is achieved through intellectual rather than intuitive abilities. Consequently, socialising with family members and visitors to the home can be mentally and emotionally exhausting. Parents may recognise when their autistic child needs to recover in solitude emotionally and cognitively, perhaps spending time alone in their bedroom or the garden. An autistic child may need guidance in reading social cues and knowing social conventions such as the different types of greetings according to the position of the visitor within the family and cultural expectations. For many autistic children, ‘two are company, three a crowd’ so there may need to be adjustments regarding the number of people in the room or home. Large family gatherings and sibling parties may need careful preparation and monitoring according to the ability and stress level of an autistic child. Parents will need to explain their autistic child’s challenges in social situations to those visiting the home.

Special interest

One of the characteristics of autism is an interest that is unusual in intensity or focus. The interest has many functions including a sense of emotional and intellectual enjoyment, a thought blocker for anxious or sad thoughts, an energiser when energy is depleted, such as when returning home from school and a means of making friends with those who share the same interest. The difficulty for parents is determining what is a reasonable amount of time to engage in the interest. There will need to be a compromise and an autistic child knowing and accepting when and for how long they can engage in their special interest.

Coping with change

Autistic children feel calmer when they experience routines and predictability in the daily schedule of experiences and expectations at home. There can be extreme distress when there are even small changes to their expectations. They have a ‘plan for the day’ and can have difficulty conceptualizing an alternative plan. It is inevitable that there will be unexpected changes in daily routines at home and parents will need to provide advanced information on what will change and why and help the child create a ‘plan B’.  Having too many changes in the day will increase stress levels which could result in an emotional meltdown. Parents tend to manage by planning fewer activities, using visual schedules, and giving advance notice of upcoming changes.

Coping with anxiety

Autism is associated with high levels of anxiety. Unfortunately, due to difficulties with interoception (perceiving internal body signals such as breathing and heart rate) and alexithymia (describing thoughts and feelings in words) an increase in anxiety levels may not be recognised and communicated by an autistic child. However, parents may gradually determine the signs and situations associated with anxiety. In the home environment, they will need to be aware of situations likely to increase anxiety such as specific sensory experiences, change and the unexpected, social expectations and fear of making a mistake. They recognise the child’s fight, flight or freeze reactions to high levels of anxiety and the tendency to refuse to comply with requests when anxious or needing reassurance and the completion of routines and rituals to alleviate their anxiety.

Parents will become aware of strategies to reduce their autistic child’s anxiety by providing reassurance, and information and being calm themselves. They may need advice from a psychologist and paediatrician on the range of activities and treatments available for anxious autistic children. This can include Cognitive Behaviour Therapy which may include meditation, mindfulness, and yoga that can be conducted at home. A paediatrician may consider medication to treat high levels of anxiety.

Managing a meltdown

Sensory, social, and emotional experiences can increase to a level where there is an emotional meltdown. Parents may have experienced an autistic child’s propensity for meltdowns since they were toddlers. There are two types of meltdowns that can occur at home, an explosion of emotional energy that is fuelled by frustration and anger or an implosion of emotional energy that is an expression of intense despair and the potential for self-harm. Parents will learn that during a meltdown they need to inhibit their own distress and be calm and reassuring, affirming, and validating the child’s intensity of emotions and explaining that the intense feelings will eventually go away.

It is also important not to ‘interrogate’ their autistic child as to why they are so angry or distressed.  In such an emotional state they will have difficulty giving a coherent and sequential explanation of why they are agitated. As an autistic child said: When I’m upset, the last thing I want to do is talk to someone. Parents will also learn that a focus on punishment and consequences during a meltdown will not be effective as explained by an autistic child who said: I can hear but my brain can’t process what people say.  After the meltdown parents can explore with the child what happened to create such intense distress and create with the child, a plan to manage similar situations in the future.

Experiencing and expressing affection

An emotion repair mechanism that is very effective for typical children is affection, but affection may not be as effective for autistic children. As an autistic adolescent said: Human comfort has always been a mystery. Parents soon learn to adjust their level of affection as an expression of love and reassurance to a level that is comforting and enjoyable for an autistic child. The level would probably be perceived as insufficient for a typical child but just right for an autistic child. Parents also come to accept that the autistic child’s own expression of love for them may not be at the level of expression they would like to experience. This is due to being autistic not an absence of feelings of love for a parent.

Emotional empathy and sensitivity

A characteristic of autism that we are increasingly recognising is an ability to perceive, absorb and amplify within themselves, negative emotions in others and a difficulty resonating with euphoria being experienced by other family members. A parent may be feeling anxious, agitated, or distressed (perhaps for reasons that have nothing to do with their autistic child) and try to suppress and inhibit their feelings. However, an autistic child can have a ‘sixth sense’ ability to recognise such feelings in others and be distressed themselves and not know either how to separate their own feelings from their parent’s feelings or what to do to repair their parent’s feelings. When parents are aware that this is happening, it is important to suggest to their autistic child what to do practically or emotionally (such as a quick hug) to make a parent feel better.

When there is a joyful family celebration, an autistic child may not be able to resonate with the euphoria of others and seek solitude or everyone return to a subdued emotional state. While parents may be aware of this characteristic of autism, it may need to be explained to visiting family members or family friends.

Social debriefing

Making and keeping friends can be difficult for autistic children and they are vulnerable to bullying, teasing and rejection by their peers. One of the roles of the parent of an autistic child is to provide an opportunity for a social and emotional debrief after school and to explain the intentions of peers and the development of a friendship network.

Coordinating support services

Parents of autistic children often benefit from a multi-disciplinary support team that provides advice on improving abilities and emotion and behaviour management at home and at school. Parents will need to coordinate information and strategies between their support team, teachers, and extended family. This will require the allocation of time for this role.

Daily living skills

Due to difficulties with motor coordination, attention, and planning, the parent of an autistic child will need to allocate more time than for a typical child to encourage daily living skills from learning to tie shoelaces to domestic chores. An autistic child is typically very dependent on external prompts as reminders to complete certain tasks. They also struggle to see “the point” of why they should engage in certain activities, such as household chores or tasks to attend to personal hygiene, because they personally do not care if their room is dirty, or they smell. Reasons for why we engage in these tasks need to be presented with calm and logic.

Summary

Creating an autism-friendly home will require adjustments to family routines and expectations and for parents to spend more time on a range of activities than would be expected with a typical child.  Making changes to both our expectations and the home environment, such as those changes described above, will ultimately decrease the background stress for your autistic child, and thus for the whole family.

Ageing and autism

Posted on by

Ageing and autism

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

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

Recognition of autism late in life

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

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

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

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

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

“My depression lifted without medication”.

Coping reactions over time

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

Social abilities

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

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

Employment and relationships

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

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

Quality of life

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

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

To not be disturbed

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

Having my own place to hide

Being able to express and be understood

Being able to excel in what you love to do

Space to pursue interests/hobbies

Daily engagement with special interests

Freedom from excess sensory pain/disturbance

Having a purpose in life

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

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

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

Mental health

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

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

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

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

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

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

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

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

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

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

Medical issues

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

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

Factors contributing to a positive outcome

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

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

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

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

Where to from here?

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

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

References

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

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

Croen et al (2015) autism 19 814-823

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

Mason et al 2018 Autism Research 11, 1138-1147

McConachie et al 2020 Autism in Adulthood 2  4-12

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

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

Vivanti et al (2021) Autism Research 1-11

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

The emotion repair toolbox

Posted on by

The emotion repair toolbox

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

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

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

Physical tools

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

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

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

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

Relaxation tools

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

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

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

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

Meditation tools

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

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

Social tools

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

Helping others

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

Internet activities

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

Thinking tools

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

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

Academic or intellectual achievement

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

Additional tools: Sensory sensitivity, nutrition and sleep

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

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

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

Summary for the emotional toolbox

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

References

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

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

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

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

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

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

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

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

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

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

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

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

How to address social challenges at work as an autistic adult

Posted on by

How to address social challenges at work as an autistic adult

Introduction

The characteristics of autism include difficulty achieving social reciprocity, reading non-verbal communication and teamwork skills. This can lead to problems at work with social communication. Further difficulties can arise because autistic people tend to be primarily motivated to achieve work goals, for example, getting the job done to a high standard and finalizing the details, whereas typical people often focus to a greater extent on social goals, for example, relating to someone, being liked, receiving compliments, pleasing others etc. Both sets of goals are important and valid in a work setting, but these goals need to be balanced and appropriate for the work environment.

Problems can arise when an autistic person in the workplace does not realize their own role and contribution to social communication breakdowns, and when the work culture does not understand or embrace the characteristics and motivations of the autistic person. It is important at work to recognize that it takes two to make a social interaction successful and that successful social communication requires all participants in a social interaction to understand each other’s perspective, motivation, and social abilities. If you are autistic, or that person’s colleague or line manager, take a moment to consider any social communication difficulties at work. These are some potential social challenges.

What are the social challenges at work that autistic employees face

It is important for an autistic employee to identify their social difficulties at work. They can do this from both their own perspective and from feedback from work performance interviews and comments from colleagues. Social challenges commonly experienced by autistic adults include:

being able to ask for help when needed.

being able to offer strategies for repair of the interaction when communication breaks down.

being able to assertively manage workplace bullying.

understanding another person’s point of view or objectives.

taking a literal interpretation when this was not intended.

responding with conventional empathy.

recognising personal space.

knowing when to initiate and end a conversation.

understanding office politics, interpersonal dynamics, and social hierarchy.

recognising a ‘hidden agenda’ and someone intending to take credit for the autistic person’s work.

Autistic employees may also find other people at work socially challenging when:

they expect socialising beyond the capacity or endurance of the autistic person, e.g., more eye contact, social chit chat, talking about popular topics, self-disclosure etc.

they do not seem to appreciate an honest answer and being corrected.

they interrupt the autistic person’s concentration.

they do not seek to understand the autistic person’s point of view.

How to manage social challenges at work

Once the challenges are identified, the next stage is to create a social support network that may include a trusted colleague, appointed work mentor, line or HR manager, or family member to help see the social communication problem from another perspective and to suggest strategies to acquire specific social abilities.

It is important to decide what to tell each person in the support circle about any social communication difficulties depending on the person’s role in the circle, remembering that a person in the support circle can be invaluable in facilitating seeing the problem from another point of view, which then has good potential to lead to a solution.

Seeking support, advice and knowledge

The first strategy is to seek support. It can be stressful and challenging to experience social challenges at work, and the support and understanding of others can relieve the stress of having to cope alone.

Members of the social support circle may also be able to provide guidance, advice and knowledge. For example, it may help to acquire knowledge on social communication abilities such as learning how to improve the ability to read body language and being a member of a team.

Someone from the support circle may help identify the relevant social cues and context for a situation associated with social confusion or criticism. They may be able to see different perspectives and potential social communication breakdowns that can be repaired or avoided using their social advice. They are social mentors, and it is wise to seek their advice.

Another strategy is to acquire knowledge on social communication skills using the literature and Apps on reading body language. There is also literature on how to be a successful team member. It is not only autistic employees that benefit from improving social communication.

A member of the support team may be able to translate the perspective of the autistic employee to other team members. Autism is a case of double-theory of mind difficulty. Autistic employees may struggle to understand another person’s perspective, and equally the other person struggles to read and understand the autistic person. A translator who understands both perspectives can help.

Social scripts explaining autism

With an insight into problems with social communication and motivation to repair any problems, we have found that it is possible to use social scripts to manage a breakdown in social communication. Social scripts can be useful for most of the social communication difficulties associated with autism.

Consider the following questions based on potential difficulties in social situations, and with a social mentor, creating a script for each situation. It is important to consider how to communicate specific social communication difficulties to different people at work, for example, line manager or work colleagues. A social mentor may be able to provide some insight and advice.

Question 1: How could you communicate to your line manage that you prefer to be alone during lunch breaks and do not want to talk to your colleagues?

Potential script: To improve my work performance, I need to be refreshed by solitude during the lunch break. Socialising is not refreshing for me.

Question2: How could you communicate to your colleagues that you sometimes interrupt others during their conversation, but you do not mean to be rude or disrespectful?

Potential script: Sometimes I annoy people by interrupting them. It is because I have difficulty recognising the ‘not now’ signals. Please give me a hand signal to wait until you are ready to listen to what I have to say.

It will be worthwhile creating and rehearsing the social script for a specific social situation. This can clarify the intention of the communication so that it is clear and succinct and to consider appropriate facial expressions, tone of voice and body posture. It is also important after using a social script to debrief with a social mentor.

Sometimes using a script does not have the desired effect, and the social communication problem continues, we highly recommend using someone in the social support circle to determine further strategies. Sometimes someone outside the problem may be able to help develop further self-insight or insight into the problem, as well as develop a new idea about what to do. In other cases, a mediation process at work may be helpful.

In summary

A core characteristic of autism is difficulties with social communication which can affect aspects of successful employment. It is important to identify the specific social challenges at work and to create a social support network. The social support network can provide support, knowledge and advice. One member of the team may assist by serving as a translator between autistic and neurotypical cultures at work. With clarification of points of misunderstanding, scripts can be developed and rehearsed to avoid future misunderstandings.

Employment resources for autism

We have applied our extensive experience of autistic adults to create a seven stage plan to facilitate successful employment in our new book:

Garnett, M.S. & Attwood, T. (2021). Autism Working: A Seven-Stage Plan to Thriving at Work. Jessica Kingsley Publishers. www.jkp.com

With our colleague Barb Cook, we have created a presentation on autism and employment to be webcast on the 4th of March with more information at www.attwoodandgarnettevents.com This webcast will include aspects of social communication and be of great interest to:

Employers

HR Managers

Line Managers

Team Members

Mentors and employment agency staff

Autistic employees, and

Autistic adults looking for and maintaining employment.

Partner, parents and carers of an autistic adult

Autism and camouflaging

Posted on by

Autism and camouflaging

Why camouflage autism?

Gradually a young autistic child will come to realise that they are different to their peers. They notice that their peers are able to easily and accurately ‘read’ social situations and people’s thoughts, feelings and intentions, an ability that an autistic child finds elusive. There are also differences in interests, learning style and sensory perception. An autistic child can have a personality characteristic of being an extrovert, that is wanting to connect and engage with their peers. Unfortunately, their social approaches to play and talk may be rejected, and they experience teasing, humiliation, and bullying from their peers for being different.

A characteristic of autism is to seek patterns and systems, and this can be applied to social situations. An autistic child can be very sensitive and reactive to making a social ‘error’ and quietly observe the play and social interactions of their peers from a discrete distance. Their intention is to imitate their peers. They become a ‘child psychologist’ exploring and analysing the dynamics, personalities, and social conventions of their peers. Once they have a ‘script’ they may be brave and launch themselves into social play in the hope that they will be accepted and liked. This process has been described as camouflaging autism or creating a ‘mask’ or alternative persona.

There have been at least 25 research studies exploring autism and camouflaging from early childhood to the mature years, with a recent review by Julia Cook, a friend and colleague of Michelle and Tony (Cook et at 2021). This article autism and camouflaging is based on our extensive clinical experience of the art of camouflaging by our autistic clients and friends and the research literature.

Camouflaging is an autism adaptive mechanism that can be acquired by autistic males and females to achieve social acceptance and connection as well as to be valued by others and to avoid being bullied or abused. We recognise gender differences in camouflaging in that those who identify as being a female, camouflage more than those identifying as male, across more situations, and more frequently and for a longer duration. They are more likely to perfect the art of camouflaging autism. However, autistic males may also use camouflaging in everyday life and also when dating to achieve a long-term relationship. Their neurotypical partner may only become aware of their autistic characteristics after the relationship has been formalised.

Camouflaging can commence in early childhood but not be conspicuous to parents and teachers. The young autistic child can be very aware of their social errors or ‘clumsiness’ and sometimes the ‘mask’ will slip. Their autism will be revealed. However, extensive practice, especially in the teenage years, leads to an increasing proficiency in ‘acting’ neurotypical in social situations, such that the authentic self is rarely seen by peers, but may still be recognised by parents at home.

Psychologists and parents recognise the consumption of considerable mental energy, to intellectually rather than intuitively, process social cues and responses. This requires good

executive functioning skills. We know that autistic females often have greater executive functioning skills compared to autistic males which may contribute to camouflaging success.

There is also the requirement to cognitively supress aspects of autism such as reacting to aversive sensory experiences and the inclination to reduce stress by mannerisms such as rocking. These autistic characteristics can be supressed and compressed but subsequently released in solitude or at home. While camouflaging may be a temporary ‘cure’ for autism, it can lead to a greater expression of autism at home.

Camouflaging behaviours

Julia Cook has identified several categories of camouflaging behaviours. These can eventually become automatic, with the autistic person not consciously aware of what they are doing. However, these behaviours still require the consumption of considerable mental energy.

Masking

These behaviours are designed to limit or avoid self-disclosure in a conversation.

There are also conscious modifications to gestures to ensure synchrony and equivalence to the conversation partner.

Consideration is also given to physical appearance to ‘wear the same uniform’.

Innocuous socializing

Maintaining eye contact or at least the appearance of eye contact, such as looking at the other person’s forehead or the bridge of their glasses.

Mirroring the other person’s accent, phrases, and facial expressions.

Smiling frequently when speaking or listening.

Using verbal and gestural encouragers such as nodding and saying “Oh really” at key points in the interaction.

Giving compliments to the other person.

Guiding or maintaining the topic of conversation or activity to an interest of the other person.

Apologises or provides explanations for perceived social errors.

Learns the ‘small talk’ and topics of interest of their peers.

Avoids appearing overly knowledgeable or making jokes.

Active self-preservation

Find points of commonality.

Asking questions.

Reciprocity when listening and talking during the interaction.

Consequences of camouflaging autism

As clinicians we are increasingly recognising that camouflaging autism is associated with increased levels of fatigue and stress, anxiety (general and social) and depression and suicidal ideation. Thus, camouflaging can contribute to secondary physical and mental health diagnoses.

Camouflaging is potentially emotionally and cognitively exhausting and often requires prolonged periods of solitude to recover. There can also be a tendency, even after successful social engagement, to conduct a social ‘autopsy’ and to ruminate for some time on social performance and the interpretation of ambiguous or subtle social cues.

Being successful at camouflaging autism can lead to greater social expectations from friends and employers. This can lead to wanting to ‘stop this train’ and that nobody recognises the degree of stress and self-doubt.

Psychologically, camouflaging creates a feeling of being disconnected from the authentic self. There can be thoughts that the real self must never be revealed as that would destroy all the work undertaken to achieve social connections and acceptance. Being unable to express the authentic self can also contribute to feelings of low self-worth and depression.

Camouflaging can also delay consideration of a diagnostic assessment for autism, often until a secondary psychological condition is identified such as an eating disorder, gender dysphoria and self-harm.

Resolution of camouflaging autism

Our clinical experience, recently confirmed by research studies, is that confirmation of a diagnosis of autism and maturity can resolve many of the issues associated with camouflaging. The diagnostic process and discovering the characteristics of autism is often central in the development of self-awareness and self-acceptance. The autistic person no longer feels ashamed and reluctant to reveal the real self. Authentic socializing becomes an alternative to camouflaging.

We have created an eight-session programme for autistic teenagers called ‘Being Me’ which focuses on discovering the real self and communicating who you are to adolescent peers. The programme includes group activities for the participants to explore and express themselves,

improve self-esteem and self-acceptance and enhance social skills as well as coping with potential social rejection.

We have also noted that mature autistic adults have decreased desire to camouflage their autism as it is too exhausting, not seeing the point anymore and not being ashamed of who they are. Better late than never.

As clinicians we recognise there needs to be guidance on how to authentically socialize and recognition of safe situations to learn how to express the authentic self. There is also the issue of whether and how to disclose having autism to friends and colleagues. Many of our autistic adult clients have been surprised how accepting friends have been and how employers have made appropriate adjustments. The autistic person is also probably aware that being the authentic and not so mentally exhausted will help reduce feeling depressed and exhausted. There is no need to camouflage when people understand and accept autism and fortunately society is becoming more aware of autism and associated qualities and difficulties, and we have noticed a greater acceptance of autism at school and work.

In summary

Camouflaging autism is a tempting means of achieving social acceptance. However, in the long-term, camouflaging will affect mental health and inhibit the expression of the authentic self. Be true to who you really are.

Further information and resources

We have created a presentation on autistic girls and women that will include a major section on autistic camouflaging. The presentation will be webcast on the 25th of March with more information at www.attwoodandgarnettevents.com.

This webcast will be of interest to:

Autistic teenagers and adults

Their parents and family members

Psychologists

Social workers

Psychiatrists

Teachers

Allied Health

References

For those seeking to read the relevant research literature we recommend:

Bernardin et al (2021) autism 25 1580- 1591

Bernardin et al (2021) JADD 51 4422-4435

Bradley et al (2021) Autism in Adulthood 3 in press.

Cage and Troxell-Whitman (2020) Autism in Adulthood 2 334-338

Cook et al (2021) autism 25 in press

Cook et al (2021) Clinical Psychology Review 89 in press.

Halsall et al (2021) autism 25 2074-2086

Hull et al (2021) Molecular autism 12:13

Miller, Rees and Pearson (2021) Autism in Adulthood 3 in press.

Scheerer et al (2020) Autism in Adulthood 2 298-306

Tubio-Fungueirino et al (2021) JADD 51 2190-2199

For autistic adolescents and adults and their families, we recommend the books on autism and camouflaging published by Jessica Kingsley Publishers with more information at www.jkp.com

Autism working

Posted on by

Autism working

Introduction

Achieving and maintaining employment can be difficult and stressful for autistic adults. Parents and partners also have their concerns, as they often provide employment support and employers, line managers and co-workers need guidance in how to work successfully with an autistic employee.

Unfortunately, many autistic adults who have a job are under-employed, that is, their job does not match their abilities, qualifications, and aspirations or their duration of employment is less than anticipated. This is despite autism being associated with qualities that are sought by employers such as:

ReliabilityAccuracy and precision
PersistenceAttention to detail and a perfectionist
Liking routines and proceduresCreativity and innovative thinking
Problem solvingFactual and technical knowledge
Sense of social justice and compassionNot letting socializing be a distraction
Talent in identifying patterns and systemsIdentifying and correcting errors
Enjoy cataloguing and recalling informationHonest and loyal
Working logically and systematicallyPassion for their chosen career

Having a successful career will significantly improve self-worth and self-identity, provide structure and purpose to the day, an opportunity to make friends, increase income and greater financial independence, and be an effective antidote to low self-esteem and depression.

Career choice

From our extensive clinical experience, we consider that no job or career would automatically be viewed as impossible due to autism. This can include the expected careers in engineering, information technology, science and accountancy but also a career in the arts in terms of being a fine artist, musician, actor or author. We have also known autistic adults who have been successful in the caring professions, from nursing to psychology and caring for animals such as being a vet or zookeeper. There is no automatic restriction on choice of career.

How to choose that career? The first option may be to see if there are employment prospects related to a special interest or talent that is associated with the person’s profile of autism and personality. A childhood talent with LEGO® that develops during adolescence into an intense interest in the design of machines could become the basis of a successful career in mechanical engineering. A determination to understand people may develop into a career in psychology and the caring profession, and a difficulty expressing inner thoughts and feelings using speech may lead to a talent in self-expression and perception in the arts.

We highly recommend that autistic adolescents have a detailed assessment of vocational abilities during the high school years to identify whether a talent or interest could be the foundation of a potential career. There will also need to be an assessment of vocational abilities that need improvement, such as teamwork abilities and coping with changes in job expectations. This information is then included in the high school curriculum. Autistic adults will need similar assessments, careers guidance and improvement of employment skills which could be provided by an employment agency.

When there is a history of failed employment experiences, this can provide valuable information on what skills or employment accommodations are needed and which jobs or workplaces to avoid. It may take several employment experiences before finding the right job with the right employer.

When searching for a job that matches abilities, interests, qualifications, and personality, it is important to find as much information as possible about the social and sensory aspects of the job. This can include personal space such as an open plan or single person office space, working independently or in a team, and sensory aspects such as sounds, lighting, clothing, and scents. It is also important to consider the understanding of autism of the line manager and colleagues and their willingness to learn about autism. Autistic people can sometimes have a ‘sixth sense’ to quickly appraise the social atmosphere of a new situation, and a positive or negative attitude can become apparent on meeting the staff prior to or during the interview. We recommend trusting that intuition.

Job interview

There will probably be a need for guidance in completing the job application form and, deciding whether to disclose the diagnosis. There are no clear rules on disclosure when applying for a job, and it is sometimes a personal decision based on whether disclosure would facilitate or inhibit achieving an interview or being employed. It is also important to decide what to wear for the interview and to rehearse how to answer the anticipated questions during the interview. If autism has been disclosed in the application, it may be an advantage to prepare a brief brochure on autism and associated qualities in relation to the position. The brochure can be attached to the application or given to those conducting the interview.

A job interview is a complex social ordeal. There is an expectation of accurately reading the body language of those conducting the interview, and succinctly and honestly answering their questions. An autistic candidate may have difficulty knowing the non-verbal signals and social conventions in an interview. We highly recommend practice and rehearsal in interviewing techniques and having an informative portfolio of relevant work experience that can be the focus of the interview. If those conducting the interview know that the person has autism, it will help to describe some of the difficulties associated with autism, but that these are significantly less than the qualities required for the position, and that there are strategies to facilitate successful employment.

Starting the job

There are potential employment issues associated with autism that will probably become apparent when starting a new job. These include the social aspects of the work, executive functioning abilities, sensory sensitivity, changes to job expectations and stress management. We have described these issues in some detail and provide strategies to overcome them in our recent publication Autism Working (Garnett and Attwood 2021) These are some of the issues and strategies.

Social aspects

The characteristics of autism include difficulty achieving social and conversational reciprocity, reading non-verbal communication, understanding different perspectives, developing teamwork skills, and following conversational rules. Workplace social communication challenges can also include discussing confidential and personal topics at work and respecting co-worker/employee boundaries. There can be difficulties knowing the social expectations and engagement in social events such as a celebration party and a vulnerability to being bullied and teased.

Strategies to reduce social communication difficulties include having a work mentor to explain the workplace social dynamics and protocols and developing social scripts to explain autism and seek support. Examples include how to communicate a preference for solitude during breaks, end a social conversation and return to work and reading the signals when a colleague or line manager does not want to be interrupted.

Executive functioning

This can include a propensity to be distracted by detail, organizational and planning difficulties, time management, prioritizing, and self-monitoring. We have also noted difficulties regarding unorthodox work routines and coping with errors, both personal and colleague’s errors. The autistic employee may need more supervision and guidance regarding executive functioning abilities than other employees. It is important that the line manager discuss strategies to minimize such difficulties and to have regularly schedules meetings to provide feedback on performance, workplace accommodations and areas for personal improvement.

Sensory sensitivity

The most common sensory sensitivity associated with autism is to specific sounds, but there can also be sensitivity to tactile experiences, light intensity, and aromas. Autistic adults often describe some sensory experiences as painful; the anticipation of such experiences creates anxiety and becoming hypervigilant. There is also the potential for sensory overload which is extremely distressing.

Coping mechanisms include explaining the sensory sensitivity to colleagues and line manager and requesting accommodations such as working some distance from the sound of the hand dryer or fridge and if possible, having natural rather than fluorescent lighting.

Changes to job expectations

A characteristic of autism is a difficulty coping with change and the unexpected. It is inevitable that there will be changes in the work environment, but it is important that the autistic person is given as much warning as possible and provided with an explanation of why there is a change of plan and expectations. This will enable the autistic person to create a new mind set.

It is also important to be aware that while promotion is considered a reward for the quality of work, there can be difficulties if the new role requires greater social and teamwork skills. It is important to consider social communication challenges in career and promotion planning.

Stress management

When work demands exceed an autistic individual’s resources and abilities, stress is the inevitable result. It is important that the autistic employee knows their personal signs of work-related stress, which work situations create significant stress, and that stress levels are communicated to the line manager.

High levels of stress will affect work performance and could lead the autistic person to resign. There may be strategies to reduce stress at work such as having a quiet retreat area to reduce stress and restore energy, using relaxation strategies and an opportunity to de-brief at work or home.

In summary

Autistic adults often have difficulties getting and keeping a job, despite having many qualities that employers seek. We need to assess an autistic person’s employment attributes and challenges, enhance their employment qualities, and address their employment issues. We also need to educate the workforce in how to accommodate and benefit from an autistic employee or colleague.

Employment resources for autism

We have applied our extensive experience of autistic adults to create a seven stage plan to facilitate successful employment in our new book Autism Working and with our colleague Barb Cook, created a presentation on autism and employment to be webcast on the 4th of March with more information at www.attwoodandgarnettevents.com This webcast will be of great interest to:

Employers

HR Managers

Line Managers

Team Members

Mentors and employment agency staff

Autistic employees, and

Autistic adults looking for and maintaining employment.

Parents and carers of autistic adults

Reference

Garnett M. and Attwood T. (2021) Autism Working: A Seven-Stage plan to Thriving at Work Jessica Kingsley Publishers, London.