In this podcast series ‘Autism, a parents guide’ Dr. Ann Ozsivadjian discusses autism with freelance journalist Jo Carlowe.
Ann discusses when challenging behaviour can be deemed as Pathological Demand Avoidance (PDA), and how to recognise it in a child with an autism diagnosis.
Although PDA is not currently formally recognised as part of an autism diagnosis, there is growing evidence showing it can be included in an autism profile. Ann suggests strategies to try at home to help manage the behaviour, getting to the core of the behaviour and how to have conversations with teachers, schools and other institutions to support children.
We are delighted that this podcast series for parents is supported by the Autism Diagnostic Practice at Clinical Partners. Working nationwide with only the most experienced consultants, Clinical Partners ensures you get the best ASD diagnosis and help tailored specifically to your child, as fast as possible. Discover more.
Other Episodes in The Series
Principal Clinical Psychologist at Evelina London Children’s Hospital, Guy’s and Thomas’ NHS Foundation Trust
Ann trained in clinical psychology at Oxford and is now an honorary principal clinical psychologist at the Evelina London Children’s Hospital, honorary researcher at King’s College London and is also an independent practitioner. Ann worked in the Complex Paediatric Neurodevelopmental Disability Service at the Children’s Neurosciences Centre, Evelina London Children’s Hospital (Guy’s and St Thomas’ NHS Foundation Trust) for 16 years. Her clinical and research interests include the assessment and treatment of mental health difficulties in ASD, cognitive pathways to anxiety in ASD, and also working with girls and women on the autism spectrum.
Interviewer: Hello, and welcome to the latest instalment of this special in conversation podcast series for the Association for Child and Adolescent Mental Health, ACAMH focusing on autism spectrum disorder. I’m Jo Carlowe a freelance journalist with a specialism in psychology. Today I’m interviewing Doctor Ann Ozsivadjian, Independent Clinical Psychologist Researcher at King’s College London and Honorary Principal Clinical Psychologist at the Evelina London Children’s Hospital. This podcast is supported by Clinical Partners. Today we’re focusing on challenging behaviour and demand avoidance. Ann, thanks for joining me. Can you start with a brief introduction?
Ann Ozsivadjian: Yes. I’m a Clinical Psychologist with a particular interest in neurodevelopmental disorders and also mental health problems and behavioural, emotional problems associated with neurodevelopmental conditions.
Interviewer: We’re talking about challenging behaviour and what is often referred to as pathological demand avoidance, PDA. What is demand avoidance?
Ann Ozsivadjian: Well challenging behaviour refers to any behaviour that challenges carers, teachers or indeed any aspect of the system around a child and it usually occurs in response to something in the environment or system or within child factors, such as pain or emotion dysregulation or communicative difficulties. It can include aggressive behaviour, self-injurious behaviour, destructive behaviour that can put an individual or those around them at risk.
In fact any behaviour which is really challenging to manage. Within that a subset of behaviours are referred to as demand avoidant. This refers to an obsessive resistance to everyday demands and requests which can result in challenging behaviour. So pathological demand avoidance or PDA is a term that was coined in the early 1980s and has been used to describe demand avoidance as an actual condition, but it isn’t yet a recognised diagnosis in any of the current classification systems.
That said though the clinical description resonates with many people. So key features include resisting and avoiding the ordinary demands of life. Use social strategies as part of avoidance. For example, distracting or giving excuses or basically using any tactic to get out of complying with really quite simple requests. So like dawdling or seeming to be completely unaware of time pressures, hiding, stubborn refusal. Maybe answering I don’t know. I don’t know to everything and these are all different forms of demand avoidance.
Sometimes children can become very aggressive with parents who are trying to see through, resulting in parents feeling disempowered and at a loss. I’ve worked with many families who have just simply given up placing any demand on a child because of the impact on the whole family and they may also demonstrate highly controlling behaviour, with parents sometimes describing their child with PDA even very young children as having complete control of the household.
So throughout the podcast I’ll use the terms demand avoidance. Extreme demand avoidance and PDA interchangeably. PDA has definitely reached clinical parlance, but we do need to remember that it is not a formal classification. Just some other features of demand avoidance that can include appearing superficially sociable. So people may exclude an autism diagnosis on the basis of, say good eye contact, social curiosity, etc. but on closer scrutiny the social interactions may lack real understanding or depth.
Similarly what may look like imaginative play or role play may actually be quite repetitive or scripted on closer scrutiny and another feature that is seen quite commonly alongside controlling and demand avoidant behaviour may be obsessive behaviour focused on an individual, often a parent. For example, in refusing to separate from that parent or allowing the person to do things independently. I’ve often heard parents describe not being allowed to have a conversation by their child. I don’t know why but this may be something to do with, for example, two adults having a conversation meaning that a child feels excluded or not in control.
Maybe there’s something threatening about the conversations that are being had and also mood swings and impulsivity are often also described and I’ve certainly come across this in many of the children with demand avoidant behaviours that I’ve worked with, but of course there’s a lot of overlap here with other conditions such as ADHD and conditions affecting mood.
Interviewer: Ann, as you mentioned while pathological demand avoidance is increasingly accepted as a profile that is seen in some autistic people. It’s not recognised in the diagnostic manuals. What’s the controversy here? Why is that?
Ann Ozsivadjian: This is correct. It’s not a recognised diagnosis under any classification system. Originally it was intended to be a subcategory of what was then the pervasive developmental disorders, but this umbrella term no longer exists either and has been replaced by a single autistic spectrum. So whether or not PDA is an entity in itself and if it is whether it is part of the autism spectrum or whether it’s not exclusively seen in people on the autism spectrum is hotly debated and that is where the controversy arises. So part of the controversy is also whether PDA is simply rehashing already existing terms, such as Oppositional Defiant Disorder or ODD.
So ODD criteria include angry and irritable mood. Argumentative or defiant behaviour, and it’s a recognised diagnosis in current classification systems and can look quite similar. However, there are some differences. For example, children with ODD may be more street-wise. More socially aware. Whereas children with PDA have been described as being quite unaware of social judgment. So the desire to resist the demand can override anything, including concern as to who’s around or whether their behaviour is causing embarrassment.
Covertly though some children may feel acute embarrassment of their behaviour, particularly after the event and then feel shame which can be intolerable and then cause yet more problems. So without exception all the young people that I’ve worked with, with extreme demand avoidant behaviour seemed to have low self-esteem, even if they’re rather brazen or completely defiant of rules or social hierarchy. So whether low self-esteem is a cause of controlling behaviour or resulting from the fallout from demand avoidant behaviour is yet a question to be answered, but many clinicians will give dual-diagnosis.
For example, ASD plus ODD which again tributes to some of the controversy. So does the PDA add any diagnosis, add anything but many parents do feel that the particular description of PDA fits their child’s presentation quite perfectly and feels less pejorative or blaming the ODD, but it may also be different drivers of the behaviour, for example, PDA is often associated with high levels of anxiety and intolerance of uncertainty, which we’ll discuss a bit later on.
Interviewer: Are extreme demand avoidance behaviours specific to autism or can a child present with demand avoidance, but not to be on the spectrum?
Ann Ozsivadjian: So this is one of the key controversies and also keeps changing. So really PDA was conceptualised by Elizabeth Newsom as being a separate syndrome actually because of some of the socially manipulative behaviours that were described and at the time it was felt that autistic children would not have the perspective taking skills. That is the ability to know what someone else is thinking which is needed in order to be manipulative, but then as I said, however, PDA began to be seen as being under the umbrella of pervasive developmental disorders, which then encompassed autism also, but now there’s a recognition that we just don’t know whether PDA is a subset of autistic behaviours or whether there is an overlap but also features that are not exclusive to being under the autism umbrella and extend to those without an autism diagnosis, but with sub-threshold features.
So for example features such as responding to humour and interest in role play and fantasy didn’t sit particularly well with what we thought we knew about autism, but equally now there’s a recognition that people with autism aren’t necessarily as impaired in those areas as we thought previously. I know many people with autism has wonderful imaginations, for example. So there’s a lot of uncertainty still around this question, and another difficulty is that while there’s no medical tests for autism as such there is at least a recognised genetic component.
It is a fairly close syndrome. It was established standardised diagnostic tools, even if there is some variability in diagnostic practices. However, we just don’t have that for demand avoidance yet. So there’s a lack of good quality research with well updated measures.
Interviewer: How prevalent are extreme demand avoidance behaviours?
Ann Ozsivadjian: There’s very little research in this area at all. It’s thought to be uncommon, but we thought that about autism once which is now recognised to be much more common than we thought. A study by Christopher Gillberg in 2015 suggested that demand avoidant behaviours may present in up to one in five children with autism, but it was a tiny, tiny sample and again without well validated measures it’s hard to produce high-quality research, and note that the caveat was that one in five presented with a possible diagnosis of PDA and not a diagnosis.
So one interesting thing though that did come out of this study was an indication that children who have demand avoidant features may not always do so as they continue to develop. The study was conducted over two time points and they discovered that of the nine individuals who potentially met PDA criteria at the first time point only one still met criteria at the second time point and the methodology of this research for sound in that it was a population sample, but as I said the numbers were very, very small.
So needed to be interpreted with caution but nevertheless it would be really interesting to follow up a cohort of young people with demand avoidant behaviours and see how they integrate into society as they develop.
Interviewer: There had been some research on PDA. You explored some in a recent editorial in the Journal Child and Adolescent Mental Health, CAMH. What did these studies reveal regarding the underlying factors that contribute to this anxious need for control.
Ann Ozsivadjian: So this leads onto what in my view is a much more interesting question, which is why do these behaviours occur or as I heard Francesca Happe ask in one of her talks on PDA the question might not be why some children obsessively resist demands, but why do most children comply? I thought a really interesting take on it and it helps us think about what is the benefit of compliance, i.e. what’s in it for a child to comply as well as what is the disadvantage of non-compliance which helps us to think about how to intervene when we truly understand what is driving the behaviour because after all it doesn’t matter one iota what adults think.
We can set a child until we’re blue in the face this is why you need to comply but if they don’t see it that way it won’t work. The research I reviewed looked at the concept of intolerance of uncertainty or IU as a possible underlying factor in PDA. So I use exactly what it says it is. It’s an intolerance of uncertain situations or outcomes. So for example, if you forget your phone at home one day can you tolerate the uncertainty of not knowing whether someone has called you?
Looking at a group of children who scored highly for the presence of demand avoidant behaviours they found that intolerance of uncertainty was also a feature for many of them. So by way of an association only it’s possible that this is a pathway to demand avoidant behaviours and by association only I mean that we can’t say yet whether this is the cause or not, but there seems to be maybe an association there and it’s interesting idea.
So, for example, if you can’t tolerate the idea of say trying something new you might completely reject the demand and then this behaviour may generalise other behaviours where a demand is perceived.
It’s unlikely to be the whole explanation though. So, for example, it wouldn’t explain a child who refuses to brush their teeth and every day has a battle over it. There’s very little uncertainty over the outcome of this daily routine behaviour. Still it was interesting to see how robust the relationship between IU and PDA was and another interesting thing actually that came out of this research was that IU was associated with different aspects of demand avoidant behaviour, including controlling behaviours and drawl into fantasy type behaviours and meltdown.
So they grouped demand avoidant behaviours into those three groups and anxiety was only related to meltdowns strongly and partly withdrawal behaviours, and anxiety has been long considered to be a central driver of PDA, but I’ve never been quite convinced by this as a complete explanation. So high levels of anxiety do exist in PDA absolutely. That much is certain. I’m just not sure it explains everything. So what this research suggested and what I feel is entirely plausible is that anxiety ensues when attempts to refuse control are denied so leading to anxiety.
Therefore not just about uncertainty but about not being in control which can lead to severe meltdowns over seemingly minor triggers, like being asked to brush your teeth for example. There may of course be other factors which lead to anxiety, for example sensory issues. Some children simply don’t like brushing their teeth because it doesn’t feel nice in which case we need to validate this aversion. Demonstrate efforts to accommodate a child’s right to certain preferences, but always being mindful of not being manipulated or controlled.
So ultimately it is a child’s interest to learn to tolerate certain discomforts because the end product is worth it or it’s essential. Some discomfort they just simply may not be worth tolerating.
Interviewer: Ann, what signs might alert a parent to the fact that their child is exhibiting extreme demand avoidance?
Ann Ozsivadjian: Many parents have described coming across an article, book or perhaps TV programme about PDA and thinking yes, there’s something quite different about my child and this describes it perfectly. So there was a programme on Channel 4 called Born Naughty which particularly brought PDA into the public arena a few years ago. One of the obvious signs is when a child simply won’t comply with anything and parents feel that they’re in a constant battle to get even the most simple things done, like putting shoes on to go out or brushing teeth, for example.
Sorry to keep going on about brushing teeth, but it does seem to come up rather a lot. Might be saying things like my legs won’t work or other excuses which tend to throw people. I mean, what do you say to that and lead to rather arguments or refusing to speak in anything other than a cat voice when requests are made of the child. The key thing is that behaviour occurs in response to a demand. So it’s not just an anxious withdrawal, for example in an overwhelming situation which is, you know, from sensory perspective.
There is also something very particular about the controlling behaviour and demand avoidance. So it’s not simply controlling because of a very rigid need to adhere to a routine, for example, or controlling because of a rigid belief that everyone should behave a certain way. For example one young person that I worked with had read that crossing your legs is bad for your back. So insisted that they won’t cross their legs and this is quite different to the control seen in PDA which appear to be more to do with not wanting other people to be in control. So really the anxiety about not being in control seems to me to be the central driver of PDA. So, for example, as I mentioned I’ve worked with many parents who say that their child prevents them from speaking with one another.
So here we have a situation which is potentially threatening to a child because they’re not in control of what might be said, and going back to the concept of IU there might be some uncertainty about what might be said. For example, there may be a discussion about a potential demand like homework or a return to school, etc. So parents feeling completely out of control or a bit of a loss might also be a key indicator of PDA.
Interviewer: How can a parent get their child assessed for PDA and what does the process entail?
Ann Ozsivadjian: Well the difficulty here again is that it isn’t a recognised diagnosis. So there’s a variability as to what professionals will do in terms of assessment and diagnosis. So speaking to many colleagues in both the NHS and independent practice it’s not considered helpful to dismiss parents by simply saying PDA doesn’t exist. Also it’s not just parents who find PDA a useful conceptualisation. Many professionals do too and increasingly there’s move towards having services that assess comprehensively for whatever neurodevelopmental difficulty a child presents with, rather than having different assessment processes or pathways for different diagnosis and this includes demand avoidance as.
As professionals I think it’s incumbent upon us to be aware of the latest research and diagnostic developments and be honest about what we know and what we don’t know. Most of the parents I work with have already done their own research and they’re well aware that PDA is not yet a recognised diagnosis, but even if not it’s important to clarify this. Therefore demand avoidance can and does form a useful part of an overall diagnostic formulation. In particular. it can lead to more tailored recommendations.
Rather than simply this child has autism and these are the set of strategies. So the key is an assessment by professionals who are aware of the profile and the classification and research limitations and are able to perform an assessment skilfully and in a nuanced way creating the demand avoidant profile into the diagnostic formulation.
Interviewer: What support can they access really despite not getting that formal diagnosis?
Ann Ozsivadjian: Sure. I mean, this is a difficulty. So it is important to clarify at the assessment stage and that are PDA diagnosis and some people do make a diagnosis is unlikely to unlock access to a range of interventions. We’re still far off a set of guidelines or specialist services with regards to managing PDA. So any support will be contingent on the expertise of the professionals they’re able to access. Essentially any support will involve working with parents on communication strategies. Thinking through what works, what doesn’t work and why not and more than likely changing their entire belief system about what they expected parenting a child to be like.
Interviewer: Ann, what interventions work best for children and young people with ASD who have challenging behaviour or pathological demand avoidance?
Ann Ozsivadjian: So with regards to challenging behaviour given that any challenging behaviour is essentially a communication in response to something environmental or something within the child. Any intervention needs to start with a decent functional assessment, that is identifying what’s driving the behaviour.
So, for example, does it happen more at certain times of day in which case is it tied in with boredom or stress. Does it happen when a demand is placed upon a child in which case is the function of the behaviour to escape or control. Interventions can be developed that are contingent on this understanding. So, for example, developing a child’s ability to communicate that they are in distress or communicating to a child that there will be an end point and certain outcome.
For PDA though the approach may not be as straightforward. So what works one day may not work another day. Despite the association of PDA with autism current debates notwithstanding many strategies for autism do not seem to work actually because they’re seen by the child as being patronising or an attempt to control. For example, while many parents report seeing the benefits of a predictable routine for their child in terms of their stress levels perhaps because of the reduction of uncertainty attempts to draw up a visual timetable may also be responded to with a fairly robust communication of, no thanks.
So screwing up the timetable. Just not following it, for example. So there’s something about not just the strategy then but the way it’s applied so it does not appear to the child that they are being controlled. Having a routine but presenting it as a choice or as a team effort fosters in a child a sense of feeling in control while in fact their parents are quietly in control. That’s a bit ideal world by the way, but it’s the principle that I’m trying to communicate.
Interviewer: Ann, what strategies can parents try at home with their children to support them?
Ann Ozsivadjian: I’m going to start by quoting the National Autistic Society’s website which says when supporting a person with a PDA profile it’s important to understand that they’re not deliberately choosing to oppose you. They’re having difficulty adapting or overcoming their need to be in control of their environment. So having the right support may therefore mean that their trust and self confidence grows and with it their ability to cope more flexibly with the everyday demands of life.
I think this is spot on really and while there are strategies which I’ll go into in a sec. There’s a central premise here which underpins all the strategies which is that this child has a drive to be in control. Whether this is driven by anxiety or inflexibility or intolerance of uncertainty. So adjusting your mind-set is how this is first conceptualised into a recommendation. Professionals and parents need to help children learn that not being in control all of the time is not a bad thing.
In fact one of the ironies of demand avoidant behaviour can be that the net result is that adults can appear to be out of control which is in fact not at all containing for a child and can lead to more, not less emotional dysregulation. Issues of trust and self-confidence referred to in the NAS quote are huge and the battles which can arise undermine those issues hugely. The PDA Society also has a really useful website summarising approaches and recommendations for supporting the PDA, for supporting PDA and the link will be at the bottom of this transcript.
So some examples of common strategies include talking to the child as you would an adult so they don’t feel patronised. I often ask parents, for example, if they have a job, what would you do at work if someone you were managing or working with was being difficult? So, for example, do you confront them and simply order them to comply or do you ask them what’s wrong and then decide how to proceed? So assuming those strategies work at work maybe apply the same strategies here.
Another strategy might be reducing the perception of a demand. So this is about the language used. Tone of voice. Body language, etc. So, for example, stating facts like we’d better get ready to go now because the park closes at 3:00, rather than stop playing now because we have to go at three if that’s possible of course. You might explain why you’re asking something with a credible explanation but not getting into a convoluted discussion. So, for example, rather than put that in the bin please you could ask could you put that in the bin for me? It’s just slightly closer to you than me, and I’m just busy doing this thing over here. That would be so helpful.
Using humour or distraction can remove attention from the demand aspect. For example, Oh my gosh. I am just such a mean mummy for asking you to brush your teeth. So humour can only work if it comes naturally and it’s already part of the family script. Otherwise, there’s a risk it will come across as sarcastic and a threat to self-esteem, but when it does work it can really, really works. So by lightening a situation. Again by helping a child feel that they’re, kind of, on a par with the adult in some way.
Another strategy is being cautious with praise and reinforcement. Many children with demand avoidance can see this is a control mechanism and see it as an expectation also placed upon them to behave the same way again if their praise for doing something. Hence they may rebel against any behaviour that is praised, even if they like the praise and reinforcement. It may be better to slightly distance the reward from the action. For example, giving indirect praise like oh that’s really cool. I wish I could do that. Rather than well done for doing X Y or said which is effectively saying well done for doing what I asked.
Though similarly with sanctions, natural sanctions may be a much more effective learning experience and very concrete sanctions. So for example not wanting to play after a controlling episode, rather than losing iPad time. So if an adult, for example, just doesn’t want to play anymore. This will help a child to learn that there are some things they simply cannot control, such as another person’s feelings. If people are too accommodating in this regard, for example, by hiding their true feelings the child will not learn that there are some things that they can control and some things they cannot and that’s okay.
Interviewer: Hugely helpful. I think when a child has PDA or other challenging behaviours this impacts the whole household and I’m wondering what’s the impact on siblings and what advice do you have for parents in relation to this?
Ann Ozsivadjian: Yes, the impact on siblings can be absolutely huge and one particular challenge is that siblings may ask why is the sibling getting away with certain behaviours. Getting away in inverted commas. Why are expectations different for them? Why sanctions are applied differently, etc.?
So this is where a diagnosis can be very useful. A diagnosis or recognition at least in particular within a well-recognised diagnosis such as autism. However, it’s also very important that parents do not expect too much of their siblings. So it may not be reasonable to expect them to let everything go or to change their mind-set in the same way that a mature adult would be able to do. So it will be really important for parents to make sure that all their children get air time for frustrations and also of course if possible parent time for themselves as well.
Interviewer: Having a child who opposes your advice for control is understandably frustrating and difficult for parents. Do you have any tips for parents and carers in terms of their own self-care and wellbeing?
Ann Ozsivadjian: Absolutely, I could talk about simple aspects of self-care like making time to do yoga or having a gin and tonic at night time but self-care is really much more than that. Most of the parents I’ve worked with have described feeling quite worn down and really rather deskilled and demoralised as well. So a lot of the work I do with parents is to help them get a sense of self-efficacy and control back into their lives. Some parents may have other children who are perfectly compliant and yet feel that their parenting skills are lacking.
Others may hold down quite high powered jobs by day and yet feel that their entire home lives are controlled by one quite small or perhaps not quite so small person. So I work with parents to try to remember who they were as a person before this challenge became part of their lives or who they are at work and apply some of those qualities that make them successful at work, at home as well. Unfortunately traditional parenting models are unlikely to be successful.
So parents may need to adjust their expectations which may be at odds to their own experiences of being parented and there’s something about recognising the very particular demands of parenting a demand avoidant child, you know, when strategies that work one day may not the next. This can really take its toll and parents really need to try not to give themselves a very hard time.
Interviewer: How do educators deal with demand avoidance and other challenging behaviours associated with ASD and what conversations can parents have with schools about the best approach to take with their children?
Ann Ozsivadjian: So this can be very challenging as well and not least in terms of finding placements for children who have been unable to manage in a mainstream setting or less entrenched difficulties the approach of a teacher changing their mind-set as described above can really make all the difference. So again phrasing demands in a certain way.
Calmly but confidently and respectfully but this can be really difficult particularly if a child is constantly demand avoidant and defiant. So undermining the teacher’s authority which might affect others in the classroom as well. So if a child is out of education finding a placement can be really difficult as traditional autism approaches to education may not work. So, for example, having very firm routines. Visual time-tables, etc. Peer group might not be suitable either.
Similarly in schools for children with social, emotional or behavioural difficulties again peer group might not be right. So, you know particular as I was saying many children with PDA have fragile self-esteem. May not be particularly street-wise. Rendering them really quite vulnerable. These placements may be considered for children whose behaviour has been challenging but this may be because they were being managed incorrectly. So with the appropriate management challenging behaviours may diminish considerably. Educational settings that I visited that have been particularly helpful are those which have a flexible approach with boundaries and expectations but which are applied in a way which makes the child feels respected, heard and contained. You know somewhere where they feel safe to express their emotions.
Interviewer: For those who are listening to this podcast, Ann, where can they go for more information or to find helpful resources on the issues we’ve talked about today?
Ann Ozsivadjian: The National Autistic Society regularly updates their PDA page based on the current evidence and good practice. The PDA Society also has some very useful information particularly on supporting people with PDA.
Although this Podcast we’re recording now is primarily for parents. There are also increasingly resources recognising the difficulty of living with PDA for individuals themselves, including books written by individuals as PDA. So one book that was recommended to me, I haven’t read it myself yet, but it was highly recommended is one called the PDA Paradox, the highs and lows of my life on a little-known part of the autism spectrum. So again, I think there’s increasing amounts of resources out there for people to access.
Interviewer: Finally, Ann, what is your takeaway message for those listening to our conversation?
Ann Ozsivadjian: My single takeaway message is not to give yourself a hard time if you feel that you’re not managing or losing control because this really is a very, very difficult profile of behaviours to manage. Think about your parenting skills with other children. Think about yourself as a person who you are and seek support where possible.
Interviewer: Okay brilliant. Thank you so much Ann. For more information on ASD and the issues covered in today’s podcast please visit www.acamh.org or Twitter at ACAMH. For more information on Clinical Partners visit www.clinical-partners.co.uk.