Tag Archives: behavior

What is PDA?

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What is PDA?

Introduction

The term PDA stands for Pathological Demand Syndrome and was first coined by Elizabeth Newson, a developmental psychologist, in the 1980s in the UK. She described PDA as being extremely high anxiety driven by the need to control and avoid other people’s demands and expectations. The National Autistic Society England describes PDA as being an atypical type of autism. The term does not appear in the international textbooks that guide diagnosis. Nevertheless, there has been growing research and clinical interest in PDA as many people in the Western world recognise the profile in their children and clients.

The behavioural features of PDA have recently been described in a research study by O’Nions and colleagues (2016) to include:

non-compliance to even the most innocuous requests and insistence that others comply with their requests
strategic avoidance of demands
behaviours that suggest awareness of what might cause a diversion
obsessive need for control, including domineering behaviour
a tendency to perceive themselves as having adult status
seeming lack of responsibility or sensitivity to other people’s distress
poor social awareness
sudden mood changes
engagement and enjoyment in fantasy role-play
extreme behaviour, for e.g., intense reactions to losing games, meltdowns

Children and teens with PDA often show positive personality qualities including having charisma, a good sense of humour and are often considered likeable, chatty and fun to be with when not asked to comply with a request.

Superficially PDA appears as defiance and obstinance. A recent study conducted by Stewart and colleagues in 2020 found that anxiety and intolerance of uncertainty was at the base of the child’s attempt to increase predictability and agency in so many situations.

Is PDA a part of Autism?

PDA is considered to be an atypical subtype of autism. It differs from typical autism in that the person shows a superficial sociability and capacity to read situations to the extent that they can manipulate them to avoid complying with demands. These children usually highly value friendship, but lack self-awareness and awareness of others, so often fail to achieve deep connections with peers. They typically have very high levels of sensory sensitivity, a different perception of time and space, and a relative lack of anchoring themselves in social experience.

How do Children with PDA Cope at School?

A survey conducted by the PDA society in the United Kingdom in 2018 found that 70% of children with PDA did not thrive in the school environment or were home-schooled. O’Nions and colleagues found in 2014 that 88% refused to attend school at some point. Children and teenagers with PDA are at great risk for losing their educational placement through exclusion due to schools being unable to create an environment that the child can tolerate to be able to cope with the learning process.

Apparent strengths in their language and communication profile means it is easy for teachers to miss making the necessary accommodations for them and to forget to look at what is driving the behaviour. The child or teenager is often caught in a maladaptive coping strategy of avoidance or arguments, and the school environment often responds with punishment, and each bring out the worst in each other.

Unfortunately, clinical experience and research suggests that the strategies frequently used for autism are often ineffective and counter-productive for a child with a PDA profile.

Where to from here?

During our over 80 years of combined experience in autism we have often worked with children and teens with the PDA profile and their families. We have developed a three-hour presentation to assist families, teachers and professionals to recognise and understand PDA, and to give guidance on the best approaches we know so far. Here is the link:

https://attwoodandgarnettevents.com/product/live-webcast-pda-and-autism/

There are also a number of great resources available, and we highly recommend these:

Both the websites of the UK and Australia/NZ Chapters of the PDA Society:

http://www.pdaanz.com/
https://www.pdasociety.org.uk/

Dr Ross Greene, American Psychologist has developed a model of care called Collaborative & Proactive Solutions (CPS) which is based on research and practice and based on collaboration and compassion. He does not use the term PDA, but instead talks about kids for whom challenging behaviour occurs when the demands and expectations being placed on them exceed their capacity to respond adaptively. His website has some great resources:

https://livesinthebalance.org/

References

O’Nions, E, · Gould, J, · Christie, P, · Gillberg, C. Viding E, & · Happé, F. (2016) Identifying features of ‘pathological demand avoidance’ using the Diagnostic Interview for Social and Communication Disorders (DISCO), Eur Child Adolesc Psychiatry 25:407–419 DOI 10.1007/s00787-015-0740-2

O’Nions E, Christie P, Gould J, Viding E, Happé F (2014) Development of the ‘Extreme Demand Avoidance Questionnaire’ (EDAQ): preliminary observations on a trait measure for pathological demand avoidance. J Child Psychol Psychiatry 55:758–768

Stewart, L, Grahame E, Honey V, & Freeston, M. (2000). Intolerance of uncertainty and anxiety as explanatory frameworks for extreme demand avoidance in children and adolescents, Child and Adolescent Mental Health 25 (2), 59-67. https://doi.org/10.1111/camh.12336

Autism and camouflaging

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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 and addiction

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Autism and addiction

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Latest research on camouflaging

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Latest research on camouflaging

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

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

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

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

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

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

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

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

References

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

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

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

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

Hull et al (2020) Autism 24, 352-363

Lai et al. (2017) Autism 21, 690-702.

Mandy (2019) Autism 23 1879-1881