PDA is a particular autism spectrum disorder sub-type which has many similarities to other ASDs (in fact anecdotal evidence shows an individual can have more than one ASD sub-type, so there may be overlap of traits of more than one sub-type, such as Asperger's or high-functioning classic autism with PDA, or someone may have the full traits of the two sub-types) but also some very distinct differences.  Ordinary autism behaviour management and support techniques usually do not work with PDA.  Some of the main features of PDA are extreme anxiety leading to resistance of even the most basic everyday demands or expectations, often immerses self in role play and mimicking characters and very oppositional and controlling behaviour.  In fact PDA behaviour can be very shocking and extreme.  Read more on the PDA Society or the National Autistic Society web pages.  Please do your reading on those websites and others, this website is not to fully inform about PDA but to set up a Brighton & Hove PDA parent forum for local issues.

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There is evidence that the ADOS-2 which is ordinarily used to assess ASD, is not the best clinical tool to use for PDA, in fact the DISCO is  more likely to accurately pick up the PDA presentation profile.  The ADOS-2 is already researched to be only 77% clinically effective in identifying high-functioning autistic individuals as it was developed based on prototypical autism cases, who were also all males.  This means for females, or those with PDA, it will be even less accurate still.  Potentially then, if your child has PDA and probably even more so in the case of PDA females who have a tendency to mask their difficulties in school, they are at high risk of not being diagnosed without adequate clinical expertise and understanding of how PDA presents.  PDA children are perfectly capable (and indeed highly likely through sheer anxiety) of masking in school and the true extent of their PDA be visible at home or other settings.  PDA is also, like other ASDs, a spectrum and it is important for clinicians to analyse how the condition presents in individuals, rather than how they match PDA tick-boxes.  Not all PDA individuals present with frequent obviously challenging behaviours, it can be more avoidance through excuses.

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"Many parents of children with PDA feel that they have been wrongly accused of poor parenting through lack of understanding about the condition. These parents will need a lot of support themselves, as their children can often present severe behavioural challenges."

 

"Sometimes, obsessions with particular people can become problematic and overbearing for those who are on the receiving end."

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"Sometimes a child with PDA can appear very anxious at home but remain relatively passive at school (a learnt coping strategy). In situations like this, parents are likely to feel very isolated and inadequate. In other cases, outbursts are far worse at school, where demands may be much greater, and this can lead to multiple exclusions at an early age. For some children, this anxiety can develop to such an extent that they become school refusers." (PDA Society)

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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.

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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

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PDA Society

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The Extreme Demand Avoidance Questionnaire is used to indicate whether a child's demand avoidance meets clinical range for PDA and is a good indicator of whether they should be assessed.  The background to the EDA-Q describes how it was developed: https://sites.google.com/site/lizonions/EDAQ

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Brighton & Hove CAMHS does not adequately recognise PDA, it may be possible to obtain assessment from elsewhere within Sussex Partnership NHS Foundation Trust, but this author has evidence that there is inadequate clinical expertise or current knowledge to accurately diagnose PDA nonetheless. Therefore parents may find it necessary to approach their GP to request the Clinical Commissioning Group considers an Individual Funding Request for an out-of-area referral to a centre with the correct expertise.  It would be wise to read up on PDA and prepare written information (including the above EDAQ form) as to why your child needs a PDA assessment.  Any video evidence of behaviours may assist, along with diarised examples of the behaviours and which techniques worked, especially if they are PDA ones.  As you can see above from the PDA Society quoted information, a PDA child will not always display their behaviours in school and this can cause difficulties for the family in seeking assessment, because clinicians often place too much emphasis on whether the school notices or indeed recognises PDA behaviours.  In that event, explain that your child masks in school and quote the relevant information and source above.

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Conditions which can be misdiagnosed instead of the PDA the child in fact has, are ADHD (although this can also be present alongside PDA as up to 80% of those with an ASD also have ADHD), attachment disorder, oppositional defiance disorder (ODD)* or another ASD sub-type including PDD Other or PDD NOS.  PDA is not attachment disorder, it is not 'bad parenting' and it is not trauma, or an ordinary child's reaction to negative life events.  Parents have to be respected and trusted when they seek support or assessment for their child, not be fobbed-off or blamed.  It is a failure in duty of care to a child to send people on parenting courses and ignore a child's potential neurodevelopmental condition for which they need the earliest possible intervention to ensure best outcomes.

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*I have wondered whether PDA is a manifestation of ODD in an autistic child. ODD would present differently in an ASD child than it would in a neurotypical child.  Of course an autistic child with ODD would have their autistic traits in addition to the oppositional and avoidant behaviour.  But even if PDA is ASD+ODD, it still is a profile in an autistic child and giving it it's own name as a compound of two conditions that makes up a distinct syndrome, is still warranted and clinically justified.

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Here are the PDA educational guidance techniques: http://www.aettraininghubs.org.uk/wp-content/uploads/2012/05/5.2-strategies-for-teaching-pupils-with-PDA.pdf

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Here is the PDA Society's "PDA Awareness Matters" booklet (a reference booklet for health, education and social care practitioners): PDA Awareness Matters

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