A lot of our children with additional needs struggles with everyday ‘demands’- requests, expectations, questions, commitments. But for some, even the most routine of expectations cause great anxiety; that’s when we see Pathological Demand Avoidance (PDA) or extreme demand avoidance.
What is PDA?
Pathological Demand Avoidance (PDA) is a condition which is part of the autism spectrum, and is characterised by an overwhelming need to avoid or resist demands.
This information sheet provides some behavioural strategies to support a person with PDA.
Key characteristics of PDA
Along with other characteristics seen on the autism spectrum, a person with PDA may show the following features:
• An obsessive resistance to ordinary demands and requests
• Use of socially manipulative or outrageous behaviour to avoid demands
• Sudden changes in mood apparently associated with a need to control
• ‘Surface’ sociability, reflected in social peculiarity, difficulties with peers and lack of social constraint
• Comfortable in role play and pretending.
Like many other people on the autism spectrum, people with PDA experience high anxiety levels and can feel that they are not in control. This leads people with PDA to avoid and refuse any requests that are made too assertively. Sometimes this is due to how the person with PDA interprets the question or instruction. This can lead them to avoid tasks and activities that they would otherwise enjoy, which can be upsetting for the person with 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%)
Which strategies may help?
The PDA society provides many helpful suggestions, along with its useful PANDA mnemonic
The website goes on to explain further:
- Anxiety – the most important starting point is to understand and accept that a PDA child’s behaviours are underpinned by anxiety and a need to feel in control. Anxiety can be expressed in many different ways including avoidance, anger, shouting, crying, restlessness, boredom, fidgeting, rocking, ticks, repetitive actions, obsessing, skin picking, swearing, hiding, running off, withdrawing, throwing things and lashing out at others. The anxiety curve model is a really helpful way to understand anxiety and echoes the hierarchy of demand avoidance approaches seen in a PDA profile of autism. All the helpful approaches explained below are designed to help our children remain on the ‘lower slopes’ of the anxiety curve and avoid escalation where possible.
In addition, any or all of the following may be underlying …
- Difficulties in processing language – our children may have good expressive language but may not be able to process verbal communication quickly enough to keep up during a conversation and may be confused by non-specific questions or instructions (please listen to our webinar about PDA and speech & language for more detail).
- Difficulties with social interaction – our children may not always understand the ‘unwritten rules’ of social interaction or non-verbal communication including body language and tone of voice.
- Confusion about emotions – our children may not be able to understand or accurately ‘label’ emotions in themselves or other people, or may feel overwhelmed by their own and others’ emotions.
- Intolerance of uncertainty – our children may struggle with all the ‘what ifs’ of life, not knowing how things might ‘pan out’, what might be expected of them, where a situation might lead, when a situation might end and whether they will be able to cope with whatever may come along.
- Sensory overload – our children’s heightened sensory perception can also contribute to anxiety, overload and avoidance (please listen to our webinar about PDA & sensory processing for more detail).
Adjusting your mindset
A repeated theme in our case studies is that PDA turns “parenting norms” upside down, so our own mindset and mood are key factors in developing a toolkit of helpful approaches. Please listen to our webinar for more detail on this, but some key pointers are:
- Look beyond surface behaviours – outward behaviours are just the tip of the iceberg with many contributory factors lying below the surface as explained above.
- Re-balance your relationship – a more equal relationship between child and adult, based on collaboration and respect, builds trust. Try to aim for win:win solutions.
- Keep calm and carry on – try not to take things personally; model desired behaviours; pick your battles; treat every day as a fresh start.
- Focus on the long term objective of building a child’s ability to cope rather than short term compliance.
- Be flexible – helpful approaches require creativity and adaptability.
- See the positives – whilst supporting our children’s challenges, try not to lose sight of their many positive qualities.
- Support and self-care for you – being in touch with others who are having similar experiences can be enormously helpful and local families may have invaluable tips relevant to your area (please search our resources directory for support groups near you). It’s also important to ensure you are caring for yourself as well as possible.
Optimising the environment
Just like giant pandas, our children can thrive in the right environment – in place of firm boundaries and the use of rewards, consequences and praise, an approach based on negotiation, collaboration and flexibility tends to work better in PDA households. Top tips include:
- Balancing tolerance and demands – a child’s ability to cope with demands will vary from day to day and from hour to hour, so try to control the ‘input’ of demands accordingly (remembering that demands are many and varied) and build in plenty of ‘downtime’ to give space for anxiety to lessen and tolerance levels to replenish.
- Agreeing non-negotiable boundaries – these will vary from household to household and from child to child. For some, the barest minimum of non-negotiable boundaries (such as basic health and safety requirements or those relating to their siblings) may be needed when anxiety is very high, but they may be increased over time. Sharing clear reasons for these boundaries, and agreeing on them together as a family, can help our children to adhere to them. Enforcing these boundaries without exacerbating things may require the use of other helpful approaches (please see next section on reducing the perception of demands).
- Allowing plenty of time – time is an additional demand, so it’s helpful to build in plenty of time (for instance, setting alarms earlier on a school morning). Always try to plan ahead, anticipate potential challenges and allow some flexibility to accommodate fluctuating anxiety levels.
- Having an exit strategy – knowing how to extract yourself from a situation can help with reducing anxiety (for instance, you might agree a quiet zone where a child can retreat to or provide reassurance that if something can’t be done today it can be tried again tomorrow).
Reducing the perception of demands
Re-framing demands to make them feel less ‘demandy’ is a key technique. There are lots of ways to do this – you will probably find that a ‘mix and match’ approach works best:
- Phraseology and tone: subtle adaptations to our language and tone can benefit our children greatly. Using declarative language (like a ‘commentary’) or rephrasing things to talk about an object rather than a person and even simple things like starting rather than ending requests with the word ‘please’ can all make a big difference. For instance, when getting ready for school you might say “The clothes are on the bed. I’m happy to help.” and then walk away, rather than “You need to get dressed now” or if your child hasn’t had a drink all day you might just place the drink alongside them and say “Here’s a drink”. Similarly phrases such as “I wonder whether …” and “Let’s see if …” reduce the perception of demands. Likewise it’s helpful to avoid trigger words like “no”, “don’t” or “can’t” – you can convey the same message using different terminology (e.g. “I’m afraid it’s not possible right now”) and if you can also explain the reason and offer alternatives whilst delivering the message (e.g. “I’m afraid it’s not possible to go to the park right now because there’s a storm, but we can try this afternoon when the forecast is better and in the meantime would you like to bake a cake or watch a film?”) this can help avoid escalation.
- Indirect communication: indirect communication includes physical prompts (e.g. tapping shoes instead of saying “please put your shoes on”); visual prompts (pictures or checklists (ensuring our children have an element of choice and control, for instance in the order that things are done rather than a more formal ‘first this … then that …’ approach), post-it notes or communicating via instant messenger apps can work well); telling someone else to do something whilst in our child’s earshot (e.g. telling another child or adult “Please remember the rules about not running at the side of the pool” when you know that they know the rules already); leaving leaflets/books ‘lying around’ for our children to pick up out of natural curiosity; communicating using role play or via a third party (e.g. communicate through a favourite toy or by adopting the persona of a favourite character).
- De-personalising: explain that the requirement is made by some other, higher authority than you – for instance that “the pool manager is shutting the pool at 3pm” or that a certain law dictates certain rules.
- Distracting/turning things into a game: the idea here is to focus on something else other than the demand, so you might say “let’s see who can pull the silliest face between each item of clothing” when getting dressed or “let’s list the top 10 dinosaurs” whilst getting into the bath for instance.
- Using humour/novelty: humour is a great way to make everyone feel more relaxed and to help reduce the perception of demands; and novelty (provided the change in direction feels like a bonus/benefit for the child) can also work well.
- Asking for help: saying that you don’t know or can’t remember how to do something can be a great way of making a demand more indirect.
- Offering choices: the idea here is to give a child some control without losing all control as the adult, by offering limited choices (and being willing to accept a different choice of their own that still achieves the aim) or by offering free choice within certain parameters. For instance, you might ask “would you prefer to have a bath at 6 or 7 this evening” (and accept their negotiated answer of “6.30”) or you might stock a cupboard or shelf in the fridge with a range of healthy options and allow your child free choice of any items from there.
- Model behaviours or apply demands to yourself (with no expectation that your child will follow suit) – for instance, you might say “I’m feeling really stressed right now so I’m going to lie down in a quiet room and listen to some whale songs to help me to calm down”.
Being cautious with rewards/praise/sanctions
It can be helpful to understand why more traditional parenting approaches – such as rewards/praise/sanctions – don’t tend to be effective in PDA households.
Rewards create an additional demand on top of the demand itself; they magnify the problem if something isn’t achieved because not only is the ‘thing’ not achieved the reward isn’t earned either; and they don’t address the underlying difficulties or lacking skills which may have prevented achievement in the first place. What can work well are surprise rewards, rewards that are bestowed immediately (rather than waiting until the end of the day/week) and rewards that are tangible (rather than stickers or tokens) or matter to the child (they may be things that are linked to their special interests or involve free time to pursue an activity of their choice).
Praise may be perceived as a demand to repeat or improve on previous performance, and encouragement can feel like a demand as it increases the sense of expectation. It can be helpful to praise indirectly – for example praising the results rather than the person (e.g. “what a wonderfully tidy room” rather than “well done for tidying your room”) or praising your child to a third party in your child’s earshot. When offering encouragement, providing choices and exit strategies can be effective (e.g. “It would be great for you to go to the cinema with your friends, but don’t worry if it feels too much once you’re there, you can call me and I’ll come and pick you up”).
Sanctions or consequences may feel unjust when behaviours are a question of “can’t” not “won’t”, and may appear controlling and arbitrary when not directly related to the behaviours in question (e.g. what connection is there between not being allowed on electronics and being mean to a friend?) – they tend to lead to confrontation and escalation. Natural consequences which flow from behaviours (e.g. a friend not wanting to play or not being able to watch TV if it got broken during a meltdown) enable lessons to be learned in a more realistic way. When everyone is calm, discussing ways to avoid difficult situations from arising in future is another way for natural consequences to unfold.
Supporting sensory needs
Our children may be hyper-sensitive (seeking to avoid the sense) or hypo-sensitive (seeking out more of the sense) to any of the senses listed below:
- Vestibular (the sense of movement and balance)
- Proprioceptive (the sense of ‘position’ of your body in space and the input from muscles and joints to the brain)
- Interoception (internal senses from your body, such as hunger, thirst, pain and needing to use the toilet)
It’s possible to be both hyper and hypo sensitive to the same sense (for instance, someone may enjoy their own noise (e.g. their voice or choice of music) but find others’ or background noises intolerable) and it’s important to remember that sensory perception and sensitivity can also vary depending on levels of anxiety, illness, the type of surroundings and so on.
Falkirk Council’s helpful guide “Making sense of sensory behaviour“, the Sensory Processing Checklist and resources on Sensational Brain are useful places to start, along with our helpful webinar on this topic. The Greater Glasgow & Clyde NHS website also has useful sensory resources and the South Australia Department for Education has resources about Ineroception. An Occupational Therapist trained in sensory integration can assess a child’s sensory needs in full and may suggest a ‘sensory diet’. There are a few suggestions to try below:
- Chewy toys for those who seek oral sensory input
- Headphones playing a child’s favourite music or audio book for those who become easily overstimulated by noise and crowded places
- Carrying an object with a favoured scent (eg. candle, soap, pillow or spraying a sleeve or handkerchief) for those who become distressed by unfamiliar or unpleasant smells
- Seamless socks, wide fitting shoes and cutting labels out of clothes for those who are hyper sensitive to touch
- Asking before touching/hugging your child as some children are sensitive to touch – or equally some children may like the comfort of deep pressure and may feel well regulated using weighted blankets or similar.
- Wearing tinted or sunglasses for those who are over sensitive to light
- Taking packed lunches with preferred food/drinks for those who are avoidant of certain foods/textures.
- Access to messy play or a fidget toy for those who seek tactile input
- Plenty of opportunity for movement e.g. scooter, trampoline, running and bike rides for those who seek plenty of movement
- Rough and tumble play, playing in ball pits and sensory toys (such as a body sock) can be helpful for those with proprioception needs.
Supporting social communication & interaction
Our children often need support in relation to processing language and social interaction. A speech and language therapist can assess a child’s communication and interaction skills and make detailed recommendations. Our helpful webinar on this topic is useful place to start – a few top tips are shared below:
- Allow extra processing time so that your child can make sense of what you have said and have time to think about how to respond – it can be helpful to count to 5 in your head following a statement or request.
- Chunk questions or requests (space them out one at a time) rather than saying or asking many things in one go. Allow time for your child to answer your first question or respond to your first request before adding any follow-ups.
- Be clear and precise whilst being indirect – for example “I wonder if you could help me. I need four blue cups, from that cupboard, to be put on the table in the kitchen”.
- Role play can help our children understand other people’s perspectives, how someone’s actions can make another person feel and how this can affect relationships.
- TV/books can be a good way to learn about emotions, relationships and social dynamics, and enable our children to develop understanding and skills, in a more indirect way.
- Be inventive by linking activities to your child’s special interests or by using role play (e.g. your child could be the teacher for the day and teach her/his toys a social story or how to act in certain social situations) or by making a poster together that will tell other children how to behave.
Approaching behaviour that challenges
The helpful approaches outlined above are often very effective, and the frequency or intensity of meltdowns usually subside. However, meltdowns (best seen as panic attacks) are still likely to occur – please see our detailed page on meltdowns for more on this. It’s really useful to understand the triggers and/or possible purpose behind any behaviour that challenges – please see understanding behaviours for a structured approach to building up a picture of what can lead to these episodes that also points us towards the approaches that may be helpful.
Following a situation that has been tricky to handle, it can be helpful to reflect back and think about how a re-occurrence might be avoided in future. Try to approach this with a detective’s hat on, take the learning points on board but try not to dwell too much on things.
Working together with our children collaboratively and proactively to find solutions can also be really beneficial – many families find Dr Ross Greene’s approach in this area extremely helpful, it is explained in detail on his website and in his books ‘The Explosive Child’ and ‘Lost at School’. Ross Greene’s approach is also particularly useful when there may be doubt or disagreement about diagnosis as his approach is diagnosis ‘agnostic’.
Recognising and regulating emotions is something most of our children find very difficult. Whilst our children are young, the adults around them will need to be very vigilant in spotting the signs that anxiety is escalating. As our children grow older and their emotional intelligence develops, they may be able to recognise their emotions and deploy their own coping skills more effectively. Books can be a good way to learn about emotions, and enable our children to develop understanding and skills, in a more indirect way. There are some general book ideas that may be helpful with this in the resources section.
Supporting emotional well-being
It is important to remember to try and support our children’s emotional well-being by
- focusing on their many positive qualities as well as trying to support them with areas that they find difficult
- regularly reminding them that they’re valued for who they are and that it’s ok to be different
- regularly reminding them that they’re loved through whichever medium works best for them
- supporting them with the things that they’re interested in rather than trying to impose on them what you feel they should be doing
- speaking about them in positive terms to other people e.g. “Millie has an amazing imagination, she always thinks of really good games to play” or “Luke really makes me laugh, he’s such good fun to be with.”
For more information and support, please have a look at these useful resources and websites: