Helpful approaches with PDA

From The PDA Society, probably one of the best resources on PDA.

Autism and the PDA profile are dimensional – this means that approaches need to be tailored for each individual child, applied flexibly and reviewed regularly. There is no wrong or right way to do things, it’s about learning as much as you can about PDA, finding out what works best for you and your child and building a framework of approaches.

This page covers:

• understanding behaviours
• adjusting your mindset
• optimising the environment
• reducing the perception of demands
• being cautious with rewards/praise/sanctions
• supporting sensory needs
• supporting social interaction & communication
• approaching behaviour that challenges – also see understanding behaviours
• supporting emotional well-being

This two page PDF is a helpful summary of the approaches outlined on this page.

Our PDA Panda ambassador symbolises helpful approaches for PDA and the P A N D A mnemonic on our infographic below provides a useful summary:

There are many resources, including webinars and books, which cover helpful approaches for children with PDA and our adult life section may be useful for older children. Our Keys to Care one-pager was written primarily with in-patient settings in mind but is also a useful summary of helpful approaches.

Many more generic autism resources – such as social stories, books, games, activities, computer games and apps – may also be helpful, but may require some creative adaption, or a more indirect form of implementation, to be effective with PDA children. Likewise therapists may need to adopt a tailored approach when working with PDA.

Similarly, these approaches can be helpful with other presentations/conditions as well as with a PDA profile of autism – they may be beneficial for autistic and non-autistic people at times of heightened emotional states or extreme anxiety, or for times of extreme demand avoidance regardless of the underlying cause.

Understanding behaviours

• 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, laughing, not talking, restlessness, boredom, fidgeting, rocking, tics, repetitive actions, obsessing, skin picking, swearing, hiding, running off, withdrawing, masking, 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. 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 (statements, comments or observations), 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 …” and including words that suggest an element of choice, such as “maybe we could …” or “a possible idea could be ….” or “I’m not sure if …” all 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 possible 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?”). Please see Declarative Language by Peer Projects for more information and ideas, and also the very practical Declarative Language Handbook.
• 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:

• Auditory
• Visual
• Oral (gustatory)
• Smell (olfactory)
• Tactile
• 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:

Communication

• 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”.

Social Interaction

• 
• 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/gaming 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 distressed behaviours usually subside. However, distressed behaviours (best seen as panic attacks) are still likely to occur – please see our detailed page on Distressed behaviours 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.”

Further information

In addition, we’d like to draw your attention to these additional sources of information, topics or fields of study which we feel are helpful in furthering understanding about PDA.

Moving forward

It can feel like a very steep learning curve to learn all about demand avoidance and develop a tailored, flexible framework of approaches. Eventually it’s likely to become second nature as you become more in tune with your child’s strengths and needs. Over time, as your child’s self confidence, emotional maturity and trust in the world develops, and as they gain more control over their lives as they get older, they may be able to cope more flexibly with demands. Their demand avoidance won’t go away, but they may develop more self-help tools and coping strategies.

This two page PDF is a helpful summary of the approaches outlined on this page.