Pathological Demand Avoidance is an autism spectrum profile and requires support strategies which minimise anxiety and facilitate the need for control through collaboration and negotiation and by being more flexible and less directive than other types of autism support strategies. In this A-Z series we share the tailored support strategies which help our child who has a PDA profile of autism. I’ve also included links to past posts which can offer more info.
A is for
Autonomy (and being flexible about how/when/how often things are done)
Providing our child with autonomy over how and when something is done is essential, otherwise her hard-wired demand avoidance response to everyday demands drives her to do all she can to avoid the demand and regain control. Giving her the freedom to choose when and how she does something helps her to feel safe and more in control of the demand.
She rarely eats at the dinner table for example, instead she eats wherever she is comfortable, and she eats when she feels she can rather than because it’s a mealtime or because the rest of the family/group are eating. Before we introduced this strategy the demand to eat was overwhelming her and she struggled to eat most days. Having autonomy over the demand now helps her to cope with it better and she is able to eat most days.
B is for
Balance demands with ability (tolerance)
Our child’s ability to deal with or tolerate demands fluctuates all the time and is usually linked to how anxious and overloaded she is. We therefore ensure we only approach a potential demand when she isn’t already processing something else, has low anxiety and isn’t overloaded by other demands or factors as this is when she has the best chance of being able to tolerate the demand and engage with any other strategies used to help her achieve it. Careful timing is always critical.
C is for
Connection is the overarching strategy of this whole A-Z. Connecting with our child and building a rapport with her to learn about and understand her individual needs, triggers, anxiety cues, strengths and interests, means strategies can be tailored and support can be planned and adapted to suit her personally.
With connection also comes trust and trust is an essential part of our child’s sense of safety. Without trust in the people in her life, uncertainty consumes her, and her anxiety and attempts to regain control escalate. Building a trusting relationship with her is key to supporting her.
D is for
Using distractions such as novelty, variety, humour, role-play, games, screens and special interests can help reduce the impact some demands have on our child as they can help distance her from the demands and make them a less anxious experience. We invite, encourage and agree to her doing things (demands) in ways that involve these types of distractions, for example:
- role-playing as characters while doing a demand
- making a demand into a game
- incorporating a special interest of hers into a demand
- offering her novel and unusual ways of doing demands
- bringing laughter to a demand or presenting it in a silly/funny way
Sometimes having a distraction is the only way she can move past demand avoidance – watching YouTube or a DVD for example, while doing a demand, is sometimes the only way it can happen.
Distractions which help in this way one time or even consistently for a day or week, might not work the next or might suddenly stop working, so having a variety of distraction options to use is essential. Sometimes a distraction will work again after a while of not using it, so we try and bring back old ones every so often too.
Being creative with distractions and quickly thinking of something which appeals to our child or makes her stop and laugh, can also help to de-escalate rising anxiety and shift her attention away from a demand or situation which is causing her distress to allow us to move on from it.
If her anxiety is very high though, we know that our distractions will be ineffective and only serve to increase her anxiety further. Distractions need to be implemented before the threat of danger, posed by the demand or situation, becomes too great or after the threat has reduced.
E is for
Empowerment with self-understanding and coping skills
Helping our child develop self-understanding and identify her own coping skills and strategies is hugely important.
Building a solid understanding of herself hasn’t come easily – self esteem issues have needed to be addressed as she has become more aware of her difficulties and differences to others, but knowing how her brain works and why she struggles with things has led to her finding ways to cope which empower her to feel more in control and to achieve more.
She is 9 now and we’ve been aware of PDA for nearly 3 years. Over that time she has gradually learnt more and more about herself and recognised coping strategies which can help her to feel calmer at times of distress. She’s keen to find more strategies to help too. It’s a very gradual process of learning by experience with some gentle guidance from us – we’ve introduced a couple of concepts along the way (problem solving hand and EFT for children) and we answer all her questions and make resources such as books and videos available to her when she’s ready for them but always follow her lead.
F is for
The right amount of free-time/downtime between everyday demands and especially between high impact demands, events and social interactions is essential for our child to be able to recover from overload and to limit burnout.
Before implementing this strategy our child didn’t have enough downtime between social situations and everyday demands for her anxiety to ever reduce to a low enough level to be able to recover from overload. This left her in a heightened state of anxiety all the time and prone to frequent meltdowns and periods of burnout.
Having free-time and downtime every day and directly before and after demands is hugely beneficial to our child. It helps her anxiety to reduce and regulate and allows her to prepare for and recover from demands.
G is for
Gentle, non-confrontational, no punishment approach
Before we knew better, we tried to stop certain behaviour in our child through punishments and rewards. This was not only ineffective but made matters worse.
Punishments and rewards exert control over a person and for a child who needs to feel in control and who cannot help being demand avoidant or the ways in which it manifests, this confrontational approach was totally inappropriate and the worst thing we could have done. It became a power struggle fraught with anxiety and it disconnected us from each other.
Now we understand what’s behind her behaviour, we don’t punish our child or use rewards for ‘good behaviour’. We’re gentle and calm and help her to understand and deal with any natural consequences in life. Our relationship with her is much stronger because of this and she’s much more receptive to us and our gentle guidance.
H is for
Help do things or do things for her when necessary
As children grow up, they are expected to do things for themselves but quite often demand avoidance won’t allow our child to do certain things for herself. It will allow us to do it for her or allow her to do it with our help though. Getting dressed for example or brushing teeth or sometimes fetching all the things she needs for an activity she wants to do.
When she can do things for herself, she does but when she can’t and is open to us helping her or asking us to do it for her, we do.
Helping her when necessary, no matter how old she is, or doing things for her, result in positive outcomes – she is able to manage the demand with as little anxiety possible or achieve something she wants to do. If, however, we didn’t help/do these things for her, they wouldn’t happen because she just wouldn’t be able to do them and if we insisted she do them, her anxiety and behaviour would escalate, resulting in poor outcomes.
I is for
Directly suggesting/saying some things to our child can make them big demands and very difficult for her to hear or do but communicating indirectly and ‘planting seeds’ and waiting for them to ‘grow’ into actions she is comfortable with can make some demands more achievable and some things easier to hear. We’ll mention something out loud or to someone else in her ear-shot so she hears it indirectly or we’ll leave something out for her to see or talk about how we/others do/feel things.
Using indirect signals that it’s time for things can help too – a timer on her tablet signals that it’s time to go up to bed for example. It’s indirect because it’s not actually saying to her “it’s bedtime” and coming from her tablet seems to depersonalise the demand and reduce the impact it has on her as well. It’s important to involve her in deciding on any signals so she feels more in control of them when they happen.
She can also respond well to language like “can you hear me?” instead of “can you pause/turn down the video?” when we need to ask her something while she’s watching YouTube and “which shoes would you like to wear?” instead of “can you put your shoes on?” when we’re leaving the house, because it’s a way of indirectly asking something (a demand) of her rather than saying it outright.
J is for
Joined-up approach to support
It is vital that everyone who supports and spends time with our child has a joined-up approach. She needs everyone in her life to understand her, use the most appropriate strategies to support her and for everyone to work together and with her to help her thrive.
K is for
Know the signs of anxiety and aim to de-escalate
Our child’s anxiety can manifest in many ways and it’s vital we know them all. Spotting signs of anxiety is our cue that she needs support to cope and feel more in control of things. The earlier we can spot these anxiety cues, the sooner we can support her with appropriate strategies and aim to de-escalate rising anxiety by being flexible and adapting to her needs in that moment.
As well as the more obvious signs such as worrying, crying and feeling nervous, some of the other anxiety cues we’ve come to recognise are becoming hyperactive; withdrawing and becoming quiet; seeking attention; talking lots and asking lots of questions; withdrawing into fantasy; masking and complete compliance; becoming angry; controlling the situation and others; picking nails; licking lips; feeling extremely bored/can’t decide on what to do; difficulty with speech and communication and more.
L is for
Listen, acknowledge & validate
When our child encounters a problem or situation which causes her anxiety to soar towards panic or ‘worst-case scenario thinking’, our instinct is to help her to solve the problem or say supportive things to help her feel better. Often though, suggesting ways to solve a problem or make something better can in fact be perceived as demands and add to her increasing feelings of overload.
On the other hand, listening to her express herself and acknowledging and validating her natural feelings can help her to eventually be free from the negative effects of those feelings and regain enough control over herself to feel calm again.
There are times when she does need help in finding a solution but we’re mindful about when that is helpful and when it becomes a demand.
Validating her feelings also shows her that we love and accept her for who she is which is vital for her self-esteem and self-worth.
M is for
Uncertainty is a major cause of worry, anxiety and panic for our child who so needs to feel in control and certain of things, so finding ways to minimise how much uncertainty she experiences is an important support strategy.
We can’t remove all of life’s uncertainties but where we can, we involve her in decisions and plans so she feels in control of what will happen and knows what to expect from them. We also prepare her for what to expect from unfamiliar places and situations, familiarising her with them beforehand with photos, videos and available info. We try and find out info before she asks so we’re ready to answer any questions she may have or involve her in finding out the answers.
When uncertainties do crop up, we support her calmly and with understanding through these difficult times and empower her with the knowledge that she can overcome them, using past experiences as examples. Not all children with PDA can take this kind of praise so an indirect approach (telling another person) may suit them better. We also gently encourage her to focus on what she is certain of to try and help her feel more in control of the situation.
Structured routines are known to reduce uncertainty for autistic people but for our child, who has a PDA profile of autism, structured routines introduced by others are demands which she has no control of, making them unhelpful and harmful. Following routines which she establishes though (and going with the flow if she alters something) can help in minimising uncertainty for her. She knows what to expect from her routines and being able to change them whenever she decides to, keeps them within her control so we encourage this.
N is for
We try to ensure our child doesn’t feel any pressure from us to do things because pressure increases the difficulty level of a demand. The more pressure attached to a demand, the more she will need to avoid it and the harder it will be for her to do.
We casually invite her to do things or think about doing things, in a relaxed manner while giving her an element of control. Instead of phrases like:
- you need to…
- you must…
- it’s time to…
- I really want you to…
- when would you like to…?
- how would you like to…?
- is it time to…?
- would you like to do x with me?
We can’t remove all pressures surrounding demands, the very nature of demands means our child feels pressure to do them but removing this layer of pressure can help.
O is for
One to one support
Our child needs one to one support and attention from us or another trusted adult who knows her well, especially while in a social setting and while engaging in structured learning and activities.
It’s important to look out for any signs that her anxiety is increasing so adjustments can be made when necessary. These may include giving her some additional control over an activity, using humour to diffuse stress or taking a break. The adjustments require quick thinking and creativity, individualised to her, in order to manage her growing anxiety quickly and restore her sense of control.
The person providing one to one support must also be patient and willing and able to adapt to our child’s changing needs.
P is for
Understanding our child’s pathological demand avoidance and anxiety has made us re-evaluate what things really are necessary and how important it is they are done in particular ways. Things we would have thought essential before are no longer as vital in our thinking, not when we realised how much anxiety and distress they can cause if pushed at the wrong time.
Prioritising which demands are necessary and which aren’t and dropping the unnecessary ones each day, so she’s not bombarded with demands all the time, is essential for her mental health and to ensure she has the ability and tolerance to manage the essential demands and things which are most valuable to her.
For demands which are priorities we use the strategies in this A-Z to reduce their impact and help make them easier for her to achieve but remain flexible and if, for some reason, she’s too anxious to manage a priority demand, we’re calm and patient and do whatever we can to help her anxiety reduce so it can be achieved when anxiety and tolerance allows (even if that means another day).
Q is for
Quiet doesn’t always equal peace
Our daughter needs to hear background noise all the time because she doesn’t feel safe when it’s quiet. She feels very uncomfortable with silence and it can make her anxiety escalate, especially at bedtime.
We listen to relaxing music at bedtime until she is asleep and have something playing in the background throughout the day too (if we are out, she might listen to something through headphones if it’s too quiet).
Establishing this need and putting things in place to help, have contributed towards reducing her anxiety overall.
R is for
Respite from anxiety
Anxiety needs an outlet and as our child experiences a lot of it we gently encourage lots of things which are calming and relax her brain and give her the respite she needs from anxiety and overload. We provide daily opportunities for her to draw, colour, re-watch familiar films and videos on YouTube, listen to favourite music and songs, rock in her rocking chair, swing/bounce, create patterns, colour sort, and anything else she enjoys doing which has a calming effect.
Having time to do these activities throughout the day is extremely important in helping reduce the frequency of overload and burnout and hopefully encourages good habits which will continue to help her in the future as well.
S is for
Addressing our child’s sensory needs has helped to reduce overload, made her life more comfortable and enabled her to cope better with some demands.
Demand Avoidance is instinctive to her survival and is pervasive across everything she does but in addition to this, sensory factors can make demands even harder for her. Addressing her sensory sensitivities around teeth brushing with unflavoured, non-foaming toothpaste and using a small headed, soft toothbrush has helped make the demand more approachable for example and wearing ear defenders has helped her feel safer in busy/loud places and more likely to attempt to go.
Other sensory needs we’ve addressed include buying bamboo socks and other comfortable clothing which match her sensory preferences, cutting out labels, respecting her sensory preferences when it comes to food, removing smells from the house which she’s sensitive to and providing opportunities to get the sensory input she needs to feel regulated and calm.
T is for
Time to go at own pace and time to process
Feeling rushed causes our child a great deal of anxiety and increases the likelihood of her exhibiting more extreme demand avoidance behaviour. She needs time to go at her own pace so we try to follow her natural rhythm and when necessary allow lots of time to get things done and don’t hurry her.
The normal demands of everyday life which cause her so much anxiety like dressing, washing, eating and sleeping are tackled calmly without pressure to do them quickly and at particular times and, where possible, we keep our arrival time somewhere ‘open’ so we aren’t pressured by needing to be out by a set time.
Sometimes our child just needs extra time to process certain demands without pressure to do them straight away. It can appear as though she is ignoring the demand but if we repeat it too soon during this essential processing time or say too much to her, it can overload her and escalate demand avoidance whereas waiting for her to respond in her own time, allowing her to process the demand and how to tackle it can sometimes help her to manage some demands.
U is for
We always try to understand our child’s perspective; what she’s experiencing and what’s behind her behaviour so we can support her underlying needs with empathy & compassion.
We understand that demand avoidance is hard-wired, not a choice and that any escalating behaviour is a sign of her growing anxiety and distress and that a meltdown is a panic attack, outside of her control. It’s important we support her calmly and with understanding through these difficult times and, as hard as it may be, don’t take anything that happens personally.
This isn’t always easy but connecting with others and learning all we can about PDA and the fight, flight and freeze response and how they presents in our child has made this easier. Here are the links which have helped our understanding to develop.
Understanding our child has enabled us and others to see her true colours and how amazing she truly is. There’s so much more to her than the PDA features which define her autism spectrum profile but being a PDAer is a big part of who she is and the features which have brought her such difficulties have also brought her strengths and qualities which we greatly admire.
V is for
Carefully designed visual aids which have an element of choice and control can help our child. If they don’t have these elements, they can become demands which she feels an expectation to follow. A visual timetable with fixed times or order for activities for example would trigger demand avoidance in her but a visual list of activities which she can choose from would help remind her what her options are (see her toolbox as an example).
Drawing Comic Strip Conversations with her has been a helpful way to explain things and we’ve learnt a lot about how she feels in certain situations while doing these also. We adapt how these are done to allow her as much control as possible over doing them while still getting our message across. She will draw with us and choose the colours we use and add background details to the drawings and story, and we go with the flow to keep her engaged while carefully keeping the main focus on the subject we are trying to explain.
Having the option to see pictures or a video of a new place before visiting can also help to alleviate uncertainty about somewhere unfamiliar, helping her to feel safer about going.
W is for
Work together (collaborate)
Our child needs to feel like our equal in order to feel safe and be able to make progress in life. We’ve learnt that working together with our child, rather than being authority figures who are in control of her, is essential. We aim to collaborate with her as partners and respect her views and perspective.
Negotiations are often needed to find a way forward and sometimes require us (the people supporting her) to adapt our thinking and make compromises to accommodate her needs – abilities we’ve come to see as valuable skills. It’s all about finding creative solutions together to reach successful outcomes.
X is for
eXit option and safe space
Providing our child with an exit option – saying “if you want to stop or leave at any time, we can” and following through with this when necessary – and a safe space to retreat to if things become too difficult, are really important and can help to minimise her anxiety around doing something by helping her to feel more in control.
Her safe space when we are out in public is often her wheelchair and sometimes the car. Being able to zone out with her headphones on, watching a film on her tablet is a safe option for her as well. At home her safe space is on the sofa in the living room, doing something relaxing.
Y is for
“You can’t pour from an empty cup. Take care of yourself”
However hard this may be in reality, we’ve learnt that it’s important to take care of ourselves in order to effectively support our child. Balancing time for us with her needs and everything else that needs to be done at home and work isn’t easy but by adjusting our priorities and expectations and being creative with how we fill up our cups, we’ve been able to give this more of the attention it deserves.
I aim for achievable things which fill up my cup each day, like EFT (aka tapping), having a quick chat (online or messaging if not in person) and laughing and, when necessary, I prioritise my need for a rest over household jobs, without feeling guilty.
Z is for
Sometimes, when our child is extremely overloaded and anxious, a zero demands policy is necessary. This means we place zero demands on her and keep communication to an absolute minimum and on her terms.
Demands will always be present (as even bodily needs and the things she wants to do can be demands) but removing all other demands and giving her space and time to decompress, helps her emotions, anxiety and tolerance to regulate.
In our experience, a period of zero demands could last anything from an hour to several weeks, depending on the circumstances. Re-introducing everyday demands slowly and at her pace, afterwards, is important too so she isn’t overwhelmed.
Review and adjust
We try and stay mindful of ensuring our lifestyle always matches our child’s current needs and abilities and we review and adjust the ways we support her as needed.
We don’t always get it right
We don’t get things right all the time and can sometimes forget to do what helps, especially when things have been going well. A lot of these strategies / ways of living and parenting have evolved over time, as our understanding has developed and through trial and error and we’re still learning.
The way we parent and support our child may seem radical for some or it may not seem radical enough for others. It is right for our child and family though and we’re seeing real benefits. The key has been understanding PDA and what the individual needs of our child are and working out how we can best support those needs with tailor-made PDA-friendly strategies.
Creating a PDA friendly lifestyle and using these strategies hasn’t changed our child’s underlying needs and that was never the goal. Her needs are still the same, she needs control and certainty and experiences demand avoidance as well as anxiety and social and communication difficulties associated with autism, but, our lifestyle and the strategies we use to support her have improved her wellbeing and quality of life, reduced her anxiety and are enabling her to hone in on and develop her skills and talents and learn how to manage aspects of her PDA.
Thanks for reading
This is by no means an exhaustive list of support strategies which can be effective for a child with a PDA profile. The A-Z is simply a way of presenting a representation of some of things we’ve found effective for our PDA child. I hope you’ve found it helpful and do let me know of any other strategies you’d add to the list. Thank you x