Whats In It For Me? - Vicky Mills

This book was written with simplicity and humour as this can be an effective approach with demand avoidance. It was designed with age 5-9 years in mind and may be helpful with all types of neuro-typical and neuro-diverse presentations - as well as good ole plain refusal!

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Vicky Mills

Vicky has a son with ADHD and Autism including Pathological Demand Avoidant traits (PDA). Vicky is also a Therapist with over 25 years experience of working creatively with children and helping them to participate in their own lives. Vicky has discovered that children benefit from the realisation that doing everyday stuff they don't want to do usually works out better for them.

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Pathological Demand Avoidance (PDA)

What is PDA?

Pathological Demand Avoidance (PDA) is a developmental disorder which is distinct from autism but falls under the spectrum. It is a pervasive developmental disorder (meaning it affects all areas of development) and was first identified by Elizabeth Newson in 2003, although it is still not currently recognised in many tools used for diagnosing autism. It is a complex, challenging and misunderstood condition that is often ignored or not even recognised by many professionals. It is worth noting that strategies which are helpful for learners with autistic spectrum disorder may not be useful in cases of PDA.

Core features of PDA are:

• A need to resist normal, everyday demands made by others
• This resistance appears to be a way of managing acute anxiety
• Unlike those with autism, learners with PDA may use social skills to manipulate; these skills are, however, at a functional and logical level rather than at a deeper emotional level.

What are the differences between learners with PDA and autistic spectrum disorder (ASD)?

• Passive early history in the first year

Young people with PDA tend to sit on the side lines just watching what is going on. They can be described as 'actively passive', letting things drop to the floor from their hands. They develop strong objections to normal requests. This is unlike young people with ASD who tend to lack social response and empathy, and tend to have poor body language and stereotypical behaviour.

• Continues to resist and avoid ordinary demands of life

Young people with PDA devote themselves to resisting ordinary demands, and as their language develops this can become worse. They may well acknowledge the demand but then can come up with a myriad of excuses as to why they cannot comply such as, "my legs won't work", "the teddy told me not to do that," etc. They may crawl underneath furniture and say that they cannot do something because they are 'stuck' and often use fantasy to withdraw, pretending to be a cat or a super hero. This is unlike young people with ASD who may be reluctant to follow a demand, but this tends to be by ignoring or shutting out pressure in a non-social way with few direct strategies for avoidance. Their approach is more direct than devious.

• Surface sociability, but apparent lack of sense of social identity, pride or shame

Young people with PDA look more sociable but this is without depth. They have few boundaries and can display uninhibited behaviour that can be shocking. Praise, reward and punishment are likely to be ineffective. Young people with ASD are not inclined to use manipulation because of a lack of social empathy and often there is no impression of sociability.

• Lability of mood, impulsive, led by need to control

Young people with PDA can switch from passive to aggressive very quickly. They may apologise yet do the same thing again straight away, whereas young people with ASD are seldom impulsive, tending more to work to their own rules and not put an act on for anyone.

• Comfortable in role play and pretending

Young people with PDA can behave to other learners like the teacher. Some lose touch with reality, adopting a 'video' character. Young people with ASD tend to be inflexible with a lack of symbolic or imaginative play due to a lack of social empathy.

• Language delay, seems result of passivity

Young people with PDA tend to have an early language delay and often a sudden catch up. Their social use of language can appear normal although content may be odd. Social mimicry is more common than video mimicry. Young people with ASD have language which is both delayed and deviant. Their social language skills are poor.

• Obsessive behaviour

Young people with PDA have obsessions which tend to be social in nature. They can be over-powering in their liking for certain others. Most behaviour is obsessive, especially the demand avoidance, and can lead to low levels of achievement. Young people with ASD have obsessions which are rarely social and not focused on demand avoidance. Their obsessions are not used for manipulative purposes.

Young people with PDA are less likely to:

• have caused anxiety to their parents before 18 months of age
• show stereotypical motor mannerisms
• show echolalia or pronoun reversal
• show speech abnormalities in terms of pragmatics
• show tiptoe walking
• show compulsive adherence to routines

Young people with PDA are more likely to:

• resist demands obsessively (100%)
• be socially manipulative (100% by age of 5)
• show normal eye contact
• show excessive lability of mood and impulsivity
• show social mimicry (including gesture)
• show role play (more extended and complete than mimicry)
• show other types of symbolic play
• be female (50%)

Helpful approaches for practitioners and parents

The quality of the relationship is fundamental and it will be important to let all relationships develop without demand. The approach needs to be highly individualised; less direct and more intuitive. Use calm and level emotions, although it can be really successful to use complex language to lead into a demand. Novelty and variety can work well used alongside flexibility and adaptability. Many parents have found that drama and role play are useful ways of disguising demands and expectations as well as constantly changing approach. Visual structures can be really helpful, including ground rules which are displayed on the wall so that you can refer to them.

Useful ways of concealing demands

• Would you do...
• Could you...
• If you're happy to...
• When you have finished with...could you...
• Do you mind going/doing...
• Is it ok with you...
• How do you feel about...
• I wish I knew someone who could help with...
• Look at that, now it's time to...
• You choose, what job shall we do next...
• I bet you can't do...in five minutes
• Don't you clear that up...
• This task or this one...
• Do you want lunch at 12 or 1...
• How long will it take in the morning to eat breakfast...

Reducing anxiety

The main issue in young people with PDA is anxiety and if you are able to reduce this, behaviours may reduce in severity. Avoid activities which are known to cause anxiety and make sure that young people are properly prepared for change. The use of anxiety scales can be useful for the young person to start to take control of this.

It can be very helpful to let the young person become part of the solution by saying 'We have a problem which needs to be fixed. An approach in which the anxiety is confirmed and reflected back can be very powerful. Think also about implied demands such as knocking on the child's bedroom door as the child will assume that the next thing will be a demand.

Other approaches which may be useful are speaking in the third person, requesting rather than demanding and offering a choice of two.

Finally, depersonalising a demand may help, such as the whole family are going to...

How to get a diagnosis

If you suspect that your child may have PDA, complete this checklist:

https://www.pdasociety.org.uk/resources-menu/extreme-demand-avoidance-questionnaire/

This is not a diagnostic tool but will give an indication of PDA.

To begin the diagnosis process, ask your GP for a referral to a local paediatrician or team who specialise in autism spectrum disorder. The recognition of PDA and ability to make a differential diagnosis may vary regionally, but it should still be possible for whoever you see to give you a detailed profile of your child's strengths and needs.

Source: https://www.priorychildrensservices.co.uk/news-blogs/understanding-pathological-demand-avoidance-pda/

PDA - by Rebecca McElroy as she considers pathological demand avoidance.

Only a short while ago, PDA (pathological demand avoidance) was a term little known to the public; however, due to an increased presence in social media, PDA is becoming a household term. It is not surprising, therefore, that services are under increasing pressure to consider PDA as a diagnosis. Whilst PDA currently falls under the umbrella diagnosis of autism spectrum disorders (ASD) (DSM-5), individual services/clinicians can choose to use PDA as a descriptive diagnosis alongside a clinical diagnosis of ASD. It was for this reason that I was asked to review the existing research literature on PDA to help the service decide whether to use PDA as a descriptive diagnosis, a regular request from families in the wake of a TV series on childhood behavioural difficulties aired earlier this year.

Professor Elizabeth Newson (founder of the term PDA) and her colleagues suggest that PDA accurately describes a group of children who, similarly to children on the autistic spectrum, present with difficulties in social communication, relationships and use of language, as well as displaying rigidity and obsessive behaviour. However, they highlight a few key, but important differences between PDA and ASD. Autistic children display rigidity through rules, routine and predictability; in PDA their rigidity is in their need to avoid demands and control situations, which can often lead to the child appearing extremely impulsive in their emotions and behaviour, as they react to demands as they perceive them. Whilst autistic children often show little or no impression of sociability, children with PDA display surface sociability; however, they often fail to recognise boundaries and struggle to comprehend the contextual factors and social norms of relationships. Autistic children invariably have marked difficulties in social communication with disordered pragmatics, eye contact and facial expression; on the contrary, whilst children with PDA often experience early language delay there is often a good degree of catch up; their language is not as disordered and their expressions and eye contact can be fair; however, speech content can seem odd or bizarre and, importantly, communication can be significantly effected by demand avoidance. The predominant characteristic of children with PDA is their continued resistance and avoidance of the ordinary demands of life. Whilst autistic children can be reluctant to comply, this is often in a non-social way; they lack the empathy to make excuses or develop strategies for avoidance. In contrast, children with PDA develop multiple strategies of avoidance, which they are able to adapt to the adult involved and can appear socially manipulative. (Newson, 2000).

As I began to review the small, but growing, research literature on PDA I was struck by the similarities between the proposed characteristics of PDA and those shown by children with attachment difficulties. PDA describes a child who is primarily led by a need to avoid demands and control situations, struggles with social communication and relationships. However, these exact same characteristics could equally be used to describe a child with disordered attachment (NICE, 2015). Furthermore, research has shown that children with a diagnosed attachment disorder may be as impaired as autistic children in their social relatedness and language skills (Sadiq, et al., 2012), and one study found that the symptoms of ASD and attachment disorder can be comorbid (Giltaij, et al., 2015). Therefore, given that PDA is currently considered a form of ASD, it is fair to assume that a similar overlap in symptoms may exist between PDA and attachment disorders.

Whilst PDA certainly does describe a group of children who do not fit the traditional ASD diagnosis, I believe there is a need for further research into the overlap between the symptoms of PDA and attachment disorders, to ensure that PDA, as a descriptive diagnosis, is used effectively and accurately. In the meantime, clinicians under pressure to diagnose PDA may be wise to exercise caution; look at all of the facts, keep an open mind and ask yourself: ‘Is there another explanation?’

Rebecca McElroy
Assistant Psychologist
Newcastle upon Tyne

References
Giltaij, H.P., Sterkenburg, P.S. & Schuengel, C. (2015). Psychiatric diagnostic screening of social maladaptive behaviour in children with mild intellectual disability: differentiating disordered attachment and pervasive developmental disorder. Journal of Intellectual Disability Research, 59(2), 138–149.
Newson, E. (2000). Defining criteria for diagnosis of pathological demand avoidance syndrome (2nd revision). Nottingham: The Elizabeth Newson Centre.
NICE (2015). Children’s attachment: Attachment in children and young people who are adopted from care, in care or at high risk of going into care. Clinical guideline, first draft.
Sadiq, F.A., Slator, L., Skuse, D. et al. (2012). Social use of language in children with reactive attachment disorder and autism spectrum disorders. European Child and Adolescent Psychiatry, 21, 267–276.