Comparisons to Other Profiles of ASD

 

Overviewautism

The Autism Spectrum is a complex and overlapping pattern of strengths and difficulties that affect individuals to varying levels and different degrees, therefore it can sometimes be very difficult to differentiate between the different profiles.

However, making the distinction between a PDA profile and other profiles of ASD, and identifying individuals for whom this profile is the most appropriate descriptor is particularly important because of the signpost that this distinction provides to the most appropriate interventions.

While PDA is relatively uncommon it is important to recognise and understand the distinct profile because it has implications for the way children are best supported and managed. The PDA Development Group - What Makes A Good Diagnostic Assessment for a Child with a PDA Profile.

However, due to long waiting times for appointments and assessments (and the difficulty with securing an assessment in the first place, for those with a less typical ASD presentation such as females on the spectrum and those with a PDA profile) it is often necessary for families, individuals and clinicians to explore different ASD profiles as part of the decision making process regarding appropriate interventions and support.

We hope that the following information will help in determining whether the PDA profile of ASD appears to be the most accurate descriptor of an individual's presentation. However please note that this can only be properly identified during an ASD assessment undertaken by an experienced multi-disciplinary diagnostic team.


Brief guide

As we have already discussed in About PDA

  • Individuals with the PDA profile will share similar difficulties to other individuals on the autism spectrum.
  • Individuals with the PDA profile will present with many of the key features of PDA rather than just one or two.
  • Many of their difficulties in the areas of social understanding & communication, plus repetitive and restricted patterns of behaviour, activities and interests may be less obvious at first; and may present as an atypical profile of ASD.
  • Demand avoidance can be seen in the development of all children, including those on the autism spectrum. But it is the extent and extreme nature of this avoidance that differentiates the PDA profile from other profiles of ASD.
  • Individuals with the PDA profile tend to use strategies that are 'social in nature' (rather than just ignoring or withdrawing) in order to avoid demands.
  • Strategies that tend to be successful for other individuals on the spectrum do not tend to be beneficial for those with the PDA Profile. 

Detailed discussion

 

Overlaps and differences between the PDA profile and other profiles of ASD

Individuals with the PDA profile of ASD are particularly vulnerable to falling through the ASD diagnostic net, due to what is often termed as an atypical ASD presentation. It is often this atypical profile of ASD that can confuse professionals regarding an assessment for, or a diagnosis of, ASD.

It is important to remember that we are still at a very early stage in our understanding of PDA. There is continuing debate and research over the exact nature of the profile and how it is described alongside other diagnostic terms. When profiles, or conditions, are defined by a number of behavioural features there will obviously be connections and overlaps between them. Similar behaviours can be seen within other conditions and for other reasons. For a clinician teasing out the underlying causes can be very difficult. This underlines the importance of detailed assessments including the taking of a developmental history, direct observation and information from all those concerned. The PDA Development Group - What Makes A Good Diagnostic Assessment for a Child with a PDA Profile.

Social interaction and communication

  • People with PDA can appear to have better social understanding and communication skills than others on the spectrum, described by Newson et al as ‘surface sociability but lacking in depth’.
  • Individuals with the PDA profile appear to have learned (at an intellectual level rather than an emotional level) many social niceties. They may seem well tuned to what might prove effective as a strategy with a particular person, and appear social or ‘people-orientated’ at first. However, they might not really have as good an understanding of social matters as it seems.

Newson et al identified many areas of difficulty that these individuals displayed in relation to social interaction and communication. Recent research by O’Nions et al has noted that these difficulties appear to be quite common across the autism spectrum, but those with the PDA profile also display additional features that appear to be exclusive to the PDA group.

A number of traditionally identified ‘PDA features’ are in fact quite common across the autism spectrum. These include lack of co-operation, changed in mood, anxiety, blaming others and making embarrassing remarks in public.  Whilst these characteristics are present in Newson’s descriptions, they may reflect a much broader pattern of behaviours that are very typical of ASD and reflect poor social awareness egocentricity, rigidity and social anxiety. In contrast, other features characteristic of PDA clearly differentiated PDA-like individuals within the ASD group. These included (amongst others) apparently manipulative behaviour, difficulties with other people, harassment of others, fantasising, lying, cheating, stealing and socially shocking behaviour. 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’). European Child and Adolescent Psychiatry, 25, 407-419.

  • People with the PDA profile often have a more socially accepted used of eye contact (other than when avoiding demands) and conversational timing than others on the spectrum. However, although expressive language can be fluent and articulate, their receptive language may not be so robust.

Emerging Themes from Clinics

  • Despite fluent expressive language, understanding is often not so robust
  • The individual can have difficulties with the time  it takes to process information
  • Fluency can mislead those communicating with them and contribute to behavioural issues

P Christie 2015.

Masking

  • Difficulties reported by parents or others involved with the individual, such as challenging behaviour, signs of anxiety and the person’s refusal to do anything that is asked of them, may not always be evident across different settings and with different people.
  • Individuals with PDA, as with others on the spectrum, are often able to hold in their anxiety, difficulties and challenging behaviour with certain people and in certain situations, which is known as ‘masking’. Masking is not a feature that is limited to those with the PDA profile of ASD, but it does appear to be more of a prevalent feature for those with the PDA profile.

On the one hand there are some children who seem to have learnt that keeping a low profile can reduce pressure and they are relatively compliant at school (usually, though, at the expense of behaving much worse at home).’ Phil Christie, Good Autism Practice Journal published by BILD, 2007

Children with PDA can also be very variable themselves in how they appear at different times, with different people and in various settings.’ Christie, Duncan, Fidler & Healy Understanding PDA in Children, p.g.18

Further information about ‘masking’ can be found at:

Imaginative play

  • Another feature that can often be confusing for professionals is the presence of a vivid imagination typified by being comfortable in role play and pretend, which was noted in Newson’s early studies. This is often to such an extent that the person actually takes on the role and style of other people or animals.
  • But, on closer inspection, recent research has reported that the presence of good imaginative play may often be steeped in repetition and/or copied from books, TV or other people.  This play can also be rigid and inflexible, especially when children are playing with peers, where they may need to control and dominate the play. 

In contrast with the emphasis Newson placed on strong imaginative abilities in PDA

  • 6 out of 24 in the PDA groups for whom ratings were available were rated as not showing pretend play
  • 2 had some learnt play
  • 3 engaged in pretend play that was copied
  • 5 engaged in creative but repetitive pretend play
  • 7 engaged in shared/pretend role play, but dominated/insisted on it being done in a particular way.
  • Only one exhibited flexible/age appropriate play.

These pro-portions do not differ significantly from those within the Non-PDA group. These results could be due to clinicians using the DISCO having greater sensitivity to difficulties or abnormalities in pretend play.

Alternatively, it could reflect differences in gender ratio in our PDA groups and Newson’s work.  Indeed, reports have suggested a link between better imaginative abilities in females versus males on the spectrum.

Impairments in pretend play in PDA reported here provide further evidence for the over-lap between PDA and ASD.

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’). European Child and Adolescent Psychiatry, 25, 407-419.

Obsessions, rigidity and repetitive activities

  • Strong fascinations and special interests are very characteristic of people with all autism profiles. Newson noted that for individuals with PDA, obsessions tended to be more social in nature, and tended to focus on other people, either fictional or real, and from a love or hate perspective. The demand avoidance also had an obsessive feel as did their love of role play.

The “pathological” nature of the demand avoidance means that it always has obsessional force; but role play is the second major obsession, which gives the impression of more socially oriented obsessions in PDA than in autism/Asperger’s syndrome. E Newson, K Le Maréchal, C David, Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders, 2003

More recent research by O’Nions et al has supported the findings by Newson, suggesting that individuals with the PDA profile do have similar difficulties with others on the spectrum in terms of obsessions, rigidity and repetitive activities, and that these may be displayed in an atypical way when compared to their non-PDA ASD counterparts.

The apparent usefulness of novelty, humour and flexibility as strategies to encourage compliance, as described by Newson et al, is very different from the routine and predictability at the heart of ASD strategy. These differences could suggest that individuals described as having PDA are less rigid than their non-PDA ASD counterparts. 

However, data suggests substantial levels of rigidity in the PDA groups. In terms of ratings of past behaviour.

  • 7 out of 26 with PDA features for whom ratings were available were described as engaging in only repetitive activities
  • 18 having some varied interests, but with prominent repetitive activities. Groups did not differ significantly from the non PDA ASD section of the cohort for past and current behaviour.

One interpretation of these observations is that in PDA, rigidity could centre on having control over one’s activities in the context of social interactions, as opposed to the temporal order of tasks or location of objects. Avoidance itself could be a manifestation of rigidity (e.g. an aversive response to the change in status from being in control to submitting to someone else’s will)

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’). European Child and Adolescent Psychiatry, 25, 407-419


The quality and nature of the demand avoidance

The extreme nature of the demand avoidance and the strategies that an individual uses to avoid demands is also a key aspect in differentiating between those individuals with a more typical profile of ASD who display some degree of demand avoidance and those with a PDA profile.

Demand avoidance in a typical presentation of ASD

  • Triggers for demand avoidance
    Individuals with a more typical presentation of ASD will often avoid some demands or situations that are likely to include triggers which will increase their anxiety, such as busy social occasions, changes in routine or sensory overload. It can also often be difficult to engage people with ASD in activities or events that they don’t see the point of, or have a specific interest in.
  • How an Individual with a typical presentation is likely to avoid the demand
    The individual may initially avoid the request, demand or an anxiety provoking situation by saying no, running off or withdrawing.
  • Strategies to reduce the demand avoidance
    Often, this avoidance can be helped and reduced with the use of traditional ASD strategies which would focus on addressing any sensory issues, helping the person adjust to new situations, keeping to a predictable routine, giving the individual plenty of warning if a routine is going to change and providing them with suitable support during these stressful periods.

‘Extreme’ demand avoidance in the PDA profile

  • Triggers for extreme demand avoidance
    The demand avoidance, typified by individuals with PDA, is more pervasive when compared to those with a more traditional presentation of ASD. For individuals with PDA the avoidance will also stem from situations such as those described above, but extends to all everyday demands, expectations and suggestions, including activities that the individual would usually enjoy or want to do. 
  • How a person with a PDA profile is likely to avoid the demand
    As with other individuals with ASD the person with a profile of PDA may avoid demands by refusing, saying no, running off or withdrawing. But, unlike many individuals with a more typical presentation of ASD, the strategies that a person with PDA often first employs tend to be social in nature, such as giving excuses, using distraction, incapacitating themselves, drowning out the request with constant interruptions or adopting the persona of another person or character. If these initial strategies are unsuccessful some individuals, but not all, may begin to use more extreme avoidance strategies such as shouting, swearing, socially shocking behaviour (such as removing their clothes), hitting and damaging property.
  • Strategies to support those with PDA
    The recommended strategies for individuals with the PDA profile would be a flexible and adaptable approach that is constantly in sync with the individual's current level of anxiety and ability to tolerate demands. This would involve offering limited choices, being flexible, phrasing demands in a non-direct manner and using negotiation to allow the person a sense of control and autonomy.  It is also important to address other areas of difficulty which could be contributing to a person’s demand avoidance, such as sensory overload, emotional overload, communication difficulties, fear of uncertainty and so on. But the strategies used, while often stemming from traditional ASD strategies, would need to be considerably adapted so that they are delivered in a non direct and PDA manner.

Useful resources


Extreme demand avoidance questionnaire - this questionnaire was designed by Liz O'nions to identify individuals with possible PDA for research purposes. It is not a validated tool for diagnostic purposes.  It should therefore be used as a guide to identify possible PDA traits and point to the need for further evaluation which should be based on a multidisciplinary assessment.

Further reading and information about PDA

If you are concerned that your child may have PDA: Please view our 'Does My Child Have PDA'? section of our website.

Adults with PDA: There is very little research that looks into the adult presentation of ASD with a profile of PDA. Therefore, much of the information below is based on our understanding and knowledge of children with PDA. For further information about how this presentation of ASD can manifest during the adult years please view adult life and our adult case studies.

Further information about PDA can be found in the following areas of our website.

The National Autistic Society also provide an increasing amount of information about PDA.


Please note that the PDA Society are not making any recommendations nor is responsible for the content of sites and links that are external to the PDA Society.

Please contact us if you discover any broken links.