A critical-insider perspective on PDA and parenting
This post is based on a presentation I gave at the PARC event ‘Critical Perspectives on Pathological Demand Avoidance’ on Tuesday 15 May 2018. This is very much a walkthrough of the presentation, using a combination of material from the slides, in text and image form, and supplementary narrative where needed.
Please note that this is a long post, but there is a lot to say! A summary will shortly be available on the PARC website.
Both me and my son believe we would meet the criteria for PDA, yet we do not identify as PDAers. I recognise us both in accounts by and about PDAers, in programmes like ‘Born Naughty’, or as described on social media by parents and PDAers themselves, but we would both describe ourselves as ‘just’ autistic. I hope to write about my own ‘demand avoidance’ in a future post. I will not be describing in any detail how my son is PDAish because that is his story to tell, but there are times when I cannot tell my story without reference to him, and he has consented to this. I understand why parents need to talk about their children, because I know how isolating our situations can be, and how we need to learn from each other to be the best parents we can be. I would just urge caution, use anonymous accounts, delete your posting histories, use pseudonyms wherever possible.
Why am I talking about PDA parenting?
I have spent around 10 years hanging out and sharing ideas and support in online forums, with a particular interest in children and young people who exhibit demand avoidant, aggressive and violent behaviours, and I have around 10 years’ experience using PDA strategies and techniques as a parent.
I have over 20 years’ experience supporting often vulnerable adults, including 18 years’ probation work with adults in the criminal justice system, many of whom were almost certainly undiagnosed autistics, including those with a PDA-type profile. Very few had formal diagnoses. As a result, I have considerable experience supporting a wide variety of people who exhibit what is often called ‘challenging behaviour’.
I also have a personal and academic interest in the discourse of ‘mother-blame’ and I have noticed how mothers of PDA-type children often experience considerable judgement and intrusion due to poor understanding of autism by professionals.
I recognise PDA as a ‘profile of autism’ (I will come back to ‘profiles’ later) and I am concerned that critique of PDA could harm PDAers and parents of PDAers, by supporting discourses centred on behavioural problems, bad parenting and mother-blame.
My aim for the presentation was to explore and ponder the tensions between my experience and observations, including the usefulness of PDA for me as a parent, and the clinical and academic construct of PDA. In essence, I am seeking to balance my pragmatic use of PDA as a signpost and shorthand for me as a parent, with my ideological and theoretical concerns about PDA for me as a fledgling academic.
- My son was diagnosed age 6 under ICD-10 with Asperger’s Syndrome.
- I was diagnosed age 46 under DSM5 with Autism Spectrum Disorder, having received a ‘non-clinical diagnosis’ the year before to evidence my need for workplace adjustments.
- I had suspected for both of us since he was 2, when, at his 2 year check the health visitor recommended I read Simon Baron-Cohen’s ‘The Essential Difference’ (lol).
- He was initially referred for an SEN assessment at 3, for an Educational Psychologist assessment at 4 and then for autism assessment at 5, largely as a result of escalating behaviour that ‘looked like’ bad parenting.
We both have a similar ‘profile’:
- Sensory problems
- Demand avoidance…
My cognitive dissonance
PDA was not well known when my son was younger and Newson’s original PDA criteria included ‘passive early history’ and ’language delay’ which did not appear to ‘fit’ my son.
Despite my son exhibiting all other PDA characteristics, this stopped me describing him as having PDA, yet:
- He presented with extreme demand avoidance and a PDA-type ‘behaviour profile’.
- PDA techniques were highly effective.
- My main support network was other parents of PDA-type children.
PDA is often confusingly described as both different to autism and as an ASD. As I consider autism and ASD to be synonymous, this does not make sense to me.
In 2016 Phil Christie (at the National Autistic Society’s Professionals Conference) said that the above 2 criteria (passive early history and language delay) were no longer considered essential criteria, and this got me thinking…
Can someone meet both a PDA and an AS profile of autism?
If I was to describe my son, or even myself using clinical, diagnostic terms, it might look something like this:
But, now look at the next 2 tables:
That is the same child (or the same adult) showing a perfect combination of 2 supposedly discrete autism profiles.
My experience and observations indicate that a more obviously- (stereotypically-) presenting Asperger-profile autistic child is likely to be diagnosed easier and quicker than a less obviously- (stereotypically-) presenting PDA-profile autistic child. My son was referred before his more PDA-profile type observable behaviours became more pronounced than his Asperger-profile type observable behaviours. This meant that identifying my son’s autism was fairly straightforward as he appeared to present with a textbook Asperger-profile of autism. We were lucky, and had we delayed, diagnosis might not have been so easy…
What is a typical path to a PDA diagnosis?
Sense of difference about the child:
- Often an early suspicion of developmental delays but nothing significant.
- Often skirting along fringes of typical development.
Escalating ‘behaviour problems’:
- Which can look like ‘bad parenting’.
- Which are often not consistent across home, school and other settings.
Usual parenting strategies don’t work:
- Parents have often worked through a series of parenting guides and often attended parenting classes.
- Parents might have got stuck in a vicious cycle of escalating ‘behaviour’ and sanctions/consequences.
Ask for help:
- First line help often means more parenting classes and advice to strictly follow reward/punishment methods.
- When the suggested strategies and approach does not work, parents are blamed for not being consistent, or not doing it properly.
- Parent blaming is almost always targeted at mums (for a range of often contradictory reasons see my previous blog post on the irony of parent-blaming).
- Attachment theory is often used incorrectly to further lay blame on mums, often resulting in ‘family therapy’ (often run by underqualified and inexperienced staff using poorly evidenced and inappropriate techniques).
- Along the way it seems not uncommon for the family to encounter a ‘renegade’ professional who sees something in the child that looks like autism even though nobody else can see it, and this results in a referral for assessment.
- Initial autism assessment often indicates a failure to meet threshold and a conclusion of ‘autistic traits’ or ‘social and behavioural difficulties’ or non-specified ‘anxiety’.
Stumble on PDA:
- By this stage parents (usually mums) have started researching and come across descriptions of PDA.
- Parents (usually mums) voraciously read about PDA and start to engage with other PDA parents.
Find support in PDA community:
- Parents (usually mums) find others like them and start to learn new, better, and considerably less stressful and anxiety-provoking ways to support their children.
- Parents start to feel heard and validated, realising that they might have been right all along, and that they are probably not bad parents.
Find sympathetic clinician who can recognise ‘subtleties’:
- Through recommendations, children are often taken for private assessments with clinical diagnostic providers who are known to be able to see beyond stereotypes and to see the often more subtle PDA presentation of autism.
- This does mean parents are ‘diagnosis shopping’, it is inevitable that clinical expertise will vary and many clinicians across all disciplines have specialist areas of interest, for example, the highly reputable Lorna Wing Centre is often recommended for assessment of girls and women.
What are ‘PDA strategies/interventions?
PDA adjustments are built around reducing demands and reducing the stress and anxiety which results in ‘demand avoidance’, and includes things like:
- Framing demands carefully
- Using indirect demands
- Explaining reasoning
- Using humour and novelty
- Supporting sensory needs
- Choosing ‘battles’ carefully
- Allowing initiative
- Offering choices
But PDA-style parenting and support is about more than ‘behaviour management’…
What does good PDA-style parenting and support look like?
- Ending the vicious cycle of increasing demands and increasing anxiety.
Adjusting expectations and environment:
- Ensuring sensory and other needs are met.
Teach and model problem-solving skills:
- Equipping and supporting children with thinking and communicating skills.
Focus on flexible and adaptable skills that will last a lifetime:
- Reducing or removing time spent on learning transient skills.
Support autonomy and self-advocacy:
- Encouraging children to be assertive and empowered.
It is my view that this set of aims should be the foundation for any autistic child, or indeed for all children.
How did PDA suddenly get so popular?
Online resources and forums:
- Including specialist (PDA Contact Group and The PDA Resource) and non-specialist (Facebook groups, Netmums and Mumsnet).
- Around 2010ish PDA became much more widely talked about and this had a snowball effect.
Backlash against dominant interventions:
- Around 10 years ago the main interventions being discussed among parents of younger autistic/possibly autistic children were ABA, TEACHH (including via the NAS Early Bird training) and Bio-medical (eg Tinsley House and Sunderland Protocol).
- Many parents of PDA-type children tried these, to varying degrees, and found them ineffective, and often found they made things worse, so parents started to look for other ways for their seemingly ‘non-compliant’ autistic/possibly autistic children.
- Many parents, me included, resisted the normalisation and cure narratives which dominated much of the autism parenting world, and wanted to find ways to support our children with more flexibility.
Increased autism ‘awareness’:
- The rise of compulsory autism training across the teaching, clinical and broader public sector contributed to many professionals thinking they understood autism.
- This training was (and indeed often still is) based on the idea of autistic people as ‘other’ (such courses are rife with ‘they do this’ and ‘they do that’), and is almost always based on a medical, deficit model of autism, often, in my view, resulting in more rigid stereotypes and less flexible thinking about autism among those who attend…
- Such training often provides a narrow, limited and limiting toolkit of strategies and interventions, and this can hinder the flexibility and creativity of approach needed by many PDA-type children (and other autistic children too).
But was PDA really a new profile?
Back to the 1940s
I was somewhat surprised when I finally read Uta Frith’s 1991 translation of Hans Asperger’s 1944 paper, and that 3 out of 4 of the case studies he presents in some detail, described behaviours that now might be seen as evidence of PDA-type autism.
These are the extracts I used in the presentation, and there is more in a similar vein, but I urge you to read the case studies for yourself and see what you think:
“… the conduct disorders were particularly gross when demands were made on him … when one tried to give him something to do or to teach something … it required great skill to make him join some PE or work even for a short while … it was particularly in these situations that he would start jumping, hitting, climbing … or some stereotyped sing-song.” (Fritz V.)
“… he was repeating the second year because he had failed in all the subjects. The teachers believed that he ‘could if only he wanted to’ … he made surprisingly clever remarks of a maturity way beyond his age … he often refused to co-operate, sometimes using bad language … ‘this is far too stupid for me’ … little things drove him to senseless fury … extremely sensitive to teasing … an inveterate liar … told long fantastic stories* …” (Harro L.)
“… reported to have been a very difficult toddler … unable to cope with the ordinary demands of everyday life … he could be very naughty and would not do as he was told … it was impossible to go to a park with him, as he would instantly get embroiled in fighting … he liked to tell fantastic stories … he had a strong tendency to argue with everybody and to reprimand them … he made life hard for himself by his awkwardness and endless hesitations.” (Ernst K.)
Fast forward to the 1980s
In Lorna Wing’s 1981 paper she describes ‘Asperger’s Syndrome’ which was very much based on then contemporary understanding of autism and Asperger’s case studies, but she removed 2 interesting elements from Asperger’s analysis:
- The possibility for imaginative play.
- The ability to be original and creative.
In Uta Frith’s 1991 footnotes to Asperger’s paper she too seemed to struggle with some of Asperger’s observations:
- Sceptical of ‘fantastic stories’ and imaginative thinking.
- ‘… the claim that autistic children have a special gift for art appreciation is very surprising’.
- ‘… little evidence that autistic children have the same sort of fantasy life as normally developing children’.
Elizabeth Newson, building on her 1970s/80s clinical work, and referred to in her 2003 paper, defined PDA as distinct from ‘classic autism’ and ‘Asperger Syndrome’ noting:
- An equal sex ratio.
- Demand avoidance using social manipulation as a key criteria.
What PDA did
- PDA provided an easy shorthand to help us help our children.
- Especially when the standard interventions did not work.
- It gave us ‘permission’ to go off-piste with strategies and interventions.
- It legitimised what we often already knew worked for our children.
- It enabled the breaking of cycles of escalating behavioural interventions
- Improving the lives of many children and families.
- It helped us find peer support.
- The nature of our children’s ‘behaviour’ can leave us extremely isolated.
- It enabled autistic children who did not fit stereotypes to get an autism diagnosis.
Do we need a PDA profile of autism?
- Autism profiles do not stand up to empirical testing.
- Profiles can perpetuate stereotypes.
- Profiles can be divisive.
- Profiles can cause confusion.
- But, profiles can also be useful:
- To highlight under-represented groups eg girls and women.
- To reach under-represented groups.
- To challenge narrow views of autism.
- They can support and affirm identity.
Why PDA matters to PDAers/PDA parents
- PDA recognition often follows years of failing to secure an autism diagnosis.
- PDAers report feeling different to other autistic people.
- PDA experience under-represented/marginalised in autism literature/resources.
- PDAers/PDA parents can feel alienated from autism/autistic community.
- PDAers/PDA parents have an emotional (and financial?) investment in PDA.
So, what’s my problem with PDA then?
The name is awful:
- Pathological can mean disease-state, extreme or compulsive/obsessive and, as well as the negative connotations and potential for stigma, I am just not sure how such a narrowly-defined term reflects the complexity and nuance of PDA-type autistic people.
It cannot be simultaneously an autism and a not-autism:
- Over and over and over again I keep seeing PDA being presented as an autism spectrum disorder but ‘not like normal autism’ and I want to shout, ‘THERE IS NO SUCH THING AS NORMAL AUTISM’.
- PDA is presented as distinct from ‘Classic Autism and Asperger’s Syndrome’ when we already have research that says these are not distinct conditions.
- On a theoretical level the reliance on Newson’s ASD tryptic (CA – PDA – AS) presents a false dichotomy for PDA, ie that it is different to CA/AS, and we now know that the ASD sub-types are not stable categories.
Perpetuates stereotyped/outdated notion of non-PDA autism:
- PDA literature often describes ‘normal autistics’ as having less empathy, being less creative, less imaginative and more rigid, more restrictive and more serious and literal than PDAers.
- The problem is that our understanding of autism has moved on considerably since Newson first theorised PDA, and we now recognise how empathic, creative, imaginative and social autistics across the spectrum can be.
No empirical evidence that PDA ‘demand avoidance’ is different from autistic ‘demand avoidance’ or non-autistic ‘demand avoidance’:
- Every single feature, trait, sign, symptom, whatever we call it, of autism, is present across the entire human population.
- Autism ‘traits’ and PDA ‘traits’ are fundamentally human traits. Just as no feature of autism is unique to autistic people, I do not believe that demand avoidance is unique to PDAers.
PDA strategies/interventions are not only useful to PDAers:
- It is often suggested that PDAers are a distinct group because ‘normal autism strategies and interventions’ don’t work, and again I want to shout, ‘BUT THEY DON’T WORK FOR MOST OTHER AUTISTIC PEOPLE EITHER’.
- PDA strategies are not unique to PDA, they are built on therapeutic methods which are well established and have broad application. We need to move away from this exclusive and silo thinking.
Inadequate recognition of fluctuating ‘demand avoidance’:
- I have heard some PDA supporters suggest that if a child (adult) is not demand avoidant all of the time it cannot be PDA.
- I would suggest that if a child is so anxious that they are demand avoidant all of the time, something seriously needs to change as that child is not being properly supported to reduce their anxiety.
The acceptance of ‘demand avoidance’ (and therefore high levels of anxiety) as a permanent state:
- Gillberg’s 2015 Faroe Islands study indicates that demand avoidance reduces as children mature.
- Based on my experience I would suggest that as children develop better communication skills, more self-awareness and improved self-regulation, that they find alternative (more socially acceptable?) ways to express their non-compliance. It is not that the instinctive fear response to perceived and actual demands is fully removed, more that we become more able to self-advocate as we develop more skills.
If PDA is a distinct profile because of the “extreme” nature of response to anxiety, what about other “extreme” anxiety responses?
- Selective mutism
- Eating disorders
- Substance misuse
Would we want:
- Pathological Selective Mutism Autism Spectrum Disorder?
- Pathological Eating Disorder Autism Spectrum Disorder?
- Pathological Self-harming Autism Spectrum Disorder?
- Pathological Substance-misusing Autism Spectrum Disorder?
What about compliance?
- Is “extreme” compliance perhaps more pathological and more harmful to autistic children and adults than “extreme” demand avoidance?
I would argue that compliance is one of the greatest risks to autistic children and adults. The ability to say, express or indicate discomfort, displeasure or distress, or even just not wanting to do something for any or no reason at all, is a vital skill.
The dismissal of some of Asperger’s observations perpetuated a narrow view of autism:
- Excluding more PDAish, social and creative autistics.
Effect of egos and competition on diagnostic categorisation:
- If Newson had been part of the in-crowd of autism researchers could the PDA-type characteristics of autism have been incorporated into the autism spectrum sooner?
- Was Newson ahead of her time in recognising, like Asperger before her, that autistic people could be creative and imaginative and that not all autistics crave routine and sameness?
Impact of increased ‘awareness’, stereotypes and prescriptive interventions on non-compliant autistics:
- It has been suggested that autistics did better before the rise of early interventions (see Michelle Dawson for example), perhaps when parents and teaching staff weren’t restrained by prescriptive autistic training models and packages (from intense ABA to social stories and emotional literacy teaching) and had to be child-focused, creative and experimental.
Dimensional nature of demand avoidance is akin to other ‘extreme’ anxiety responses:
- Should we actually be talking about ‘extreme’ anxiety?
- Is demand avoidance just one of many anxiety responses?
The PDA profile of autism, like other profiles and attempts to highlight under-represented groups (eg BAME/women and girls), has some use in the short-term to raise awareness and inform clinicians:
- Asperger’s Syndrome served a purpose in increasing understanding of the breadth of the autism spectrum, and enabled previously unrecognized autistics to be recognised as autistic, but proved to be an unstable categorisation, resulting in it being absorbed in the broader autism/ASD category.
- It is my hope that in time the PDA-profile and its criteria will be similarly absorbed and that we will develop better ways of describing the nuance of the different and varying (across people, time and culture) presentations of autism.
PDA techniques and interventions should be more widely used across the autism population to support autonomy and self-advocacy:
- Done well, the PDA approach supports children to become excellent negotiators, collaborators and activists. That has to be a good thing!
I finished my presentation by asking how do we build bridges across the spectrum?