Tag Archives: work

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

PDA in Autistic Adults

Posted on by

PDA in Autistic Adults

The term PDA (pathological demand avoidance) was first used by Professor Elizabeth Newson in the 1980s. It is a behavioural profile associated with avoidance of complying with requests and extreme agitation if demands are escalated. PDA was first recognised in autistic children, and further research identified associated features such as high levels of anxiety, lability of mood and impulsivity, surface sociability but a lack of social identity and a greater level of interpersonal skills and social manipulation than usually associated with autism (Newson et al., 2003; O’Nions et al., 2014).

Terms

There is currently some debate about terminology, especially the word pathological with alternative terms such as EDA, or extreme demand avoidance (Gillberg, 2014), DAP or demand avoidance phenomena (Woods, 2019) and the term PDA being changed by autistic individuals and PDA support groups to ‘pervasive drive for autonomy.’ There is also academic and clinical debate regarding classification and whether PDA should be considered a separate subgroup within the autism spectrum or a learned coping mechanism for the combination of high anxiety, ADHD and impulsivity, procrastination and impaired executive functioning and the social and sensory characteristics of autism. For simplicity, we will use the term PDA for this blog.

Screening instruments for adults

Egan, Linenberg and O’Nions (2019) have created and evaluated the Extreme Demand Avoidance Questionnaire – Adult or EDA-QA. There are 25 items in the self-report questionnaire, and these are ten of those items.

  • I am good at getting around others and making them do as I want
  • I seek to quibble and change rules set by others
  • I have a very rapidly changing mood
  • I am driven by the need to be in charge
  • I blame or target a particular person/persons
  • I have difficulty complying with demands and requests from others unless they are carefully presented
  • I obsessively resist and avoid ordinary demands and requests
  • I ensure any social interaction is on my own terms
  • I know what to do or say to upset particular people
  • I am unaware or indifferent to the differences between myself and figures of authority

The instrument was found to be both reliable and valid, and that PDA traits were partially related to ASD traits. The authors encourage other researchers to utilise the questionnaire to conduct further research into adult PDA.

Characteristics of adult PDA

White et al. (2022) used two online surveys with adults in the general population to explore the importance of autistic traits and anxiety as predictors of demand avoidance. They found that autistic traits and anxiety were unique and equally important predictors of demand avoidance. The study confirmed that EDA is linked to autism, with avoidance behaviours being anxiety driven.
We know that autism is associated with high anxiety levels. However, during and after puberty, the levels of constant and episodic anxiety can be unbearable and not resolved with prescribed medication and cognitive behaviour therapy. An autistic adolescent or adult may then resort to extreme behaviours to manage extreme anxiety levels, which includes achieving, by whatever means is effective, control over their daily life to avoid experiencing anxiety. Simple requests can make an autistic person feel anxious, out of control and harassed. There is a phobia or fear of demands (postulophobia).

A coping mechanism is to delay responding until the level of anxiety has naturally reduced, or the person has achieved greater cognitive control of their anxiety. This can include delaying tactics such as procrastination, negotiation, excuses for non-compliance and compliments to the person making the request to distract them. This would be stage 1 of avoiding demands.

If stage 1 strategies are ineffective, the second stage is the flight response to anxiety which involves being obnoxious, rude, and disrespectful to the person making the request. This is designed to make the person making the request go away and ‘flee’ the situation. The third stage is ‘fight’, that is, having a verbal fight or argument and an emotional explosion or meltdown. The meltdown will discharge the build-up of anxious energy and be an emotional ‘reset’.

All these reactions to requests consolidate avoidance behavior’s using negative reinforcement (decreasing or removing a negative outcome, in this case, unbearable levels of anxiety). However, there is another aspect of the response to anxiety, and that is ‘freeze’. Sometimes it may not be a question of consciously choosing not to comply with the request but being physically unable to. It is not ‘won’t’ but ‘can’t.’ The person knows what to do, it may even be to do something they want to do or is in their best interests and for someone they love or admire, but they are experiencing autistic inertia and ‘freeze.’

We also recognise that extreme demand avoidance may have similar features to other maladaptive coping mechanisms for anxiety, such as eating disorders, situational mutism, and self-harm.

The development of PDA in the adult years

Avoiding demands can broaden through childhood to a wide range of everyday situations, and responses to simple requests that others may not perceive as a demand, such as ‘Can you please pass me the newspaper?’ The person with PDA perceives these requests, which require a simple and momentary response, as overwhelming, and anxiety-provoking. The lack of compliance and avoidance strategies will lead to considerable distress and conflict within the family. There is increasing recognition of the genetic aspects of PDA, with the characteristics being identified within and between generations which will add to the conflict at home.

Elizabeth Newson and her colleagues were able to follow up on 18 adults with PDA, and all remained demand avoidant, with eight to about the same degree as in childhood, three more than in childhood and seven less. Thus, there are a range of outcomes, but the characteristics of PDA have the potential to be life-long (Newson et al., 2003). It should be noted that the 18 participants in the study could not benefit from the degree of understanding and support for PDA that is currently available. Our clinical experience is that PDA traits can decrease as the child moves through adolescence into adulthood, with the time between demand and meltdown becoming longer and the degree of distress less and greater cognitive regulation of anxiety.

Over time, there can be increasing insight into the effects of PDA on relationships and employment and the acquisition of a range of strategies to manage extreme anxiety and attempts to modify reactions. There can be improvements in self-regulation, communication, and ability to self-advocate, and creating a lifestyle with minimum demands.

However, there can be concerns when alcohol and illegal and misuse of legal drugs are used to reduce extreme anxiety, and we have known clients with PDA who have also developed drug dependency to manage their anxiety.

Home life

There can be difficulty coping with self-imposed and societal demands, such as personal hygiene and maintaining friendships and relationships and a tendency to break the rules, which can lead to conflict with the law. Trying to manage extreme anxiety and suppress demand avoidance can be exhausting, effecting energy levels and potentially contributing to depression. There may be great reliance on parents or a partner for emotional support and practical support for impaired executive functioning. The PDA adult will also need regular downtime and solitude to restore energy, with benefits from having access to a demand-free space at home to retreat to.

Work-life

PDA characteristics can affect work life, with employers considering the person arrogant or undisciplined. There can be a disregard for authority and the work hierarchy, and it is often difficult for the person to work conventionally with their tendency to be ‘my way or no way’. There may be more success being self-employed or running their own business, so there are fewer issues with not feeling in control. There may be procrastination issues, difficulty completing projects and meeting deadlines, and responding appropriately to a line manager’s requests, such as being polite to customers. The PDA adult often feels trapped in a job and needs novelty. We have noted a history of many changes in employers and careers.

Strategies for PDA

Many strategies to cope with PDA in children will also apply to adults. This includes giving the person options and choices rather than directives. We also recommend using declarative rather than imperative language (Murphy, 2020), for example, instead of ‘You need to clean your mess in the bathroom’ (imperative) to ‘The bathroom needs to be clean and tidy’(declarative). Our experience is that declarative comments are more likely to achieve a positive response.

There can be consideration of distracting thoughts when initiating and completing a task, such as using role-play, for example, imagining being filmed doing the task for a documentary, or using mental games, or listening to a podcast to complete the activity on autopilot. These strategies may act as an effective thought blocker for anxiety.

We also recommend joining a PDA group on Facebook and online to seek support from those who share the same daily challenges.

References

Egan, Linenberg and O’Nions (2019). Journal of Autism and Developmental Disorders 49

Gillberg C. (2014). Commentary: PDA Journal of Child Psychology and Psychiatry, 55

Newson E, Le Maréchal K, & David C. (2003). Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders Archives of Disease in Childhood; 88

O’Nions E, Christie P, Gould J, Viding E, Happé F (2014). Journal of Child Psychology and Psychiatry 55

White et al. (2022). Journal of Autism and Developmental Disorders 51

Woods R. (2019). Good Autism Practice 20

Resources

www.pdasociety.org.uk

Books

Declarative Language Handbook (2020) Linda K. Murphy ISBN: 9781734516203

Being Julia: A Personal Account of Living with PDA (2021). By Ruth Fidler and Julia Daunt. Published by Jessica Kingsley Publishers.

PDA by PDAers: From Anxiety to Avoidance and Masking to Meltdowns (2019). Ed. Sally Cat. Published by Jessica Kingsley Publishers.

PDA Paradox; The Highs and Lows of My Life on a Little Known Part of the Autism Spectrum. (2019). By Harry Thompson. Published by Jessica Kingsley Publishers.

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.

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 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.