Toolbox of strategies: a personalised PDA-friendly visual aid

Little Miss M would like me to tell you about her toolbox which is full of strategies to help her when things get hard…

She recently told me that life is hard with Pathological Demand Avoidance (PDA), especially the worries and stress which keep interrupting things. There are lots of strategies which I know could help her to relax and reduce her stress and worries but simply suggesting them to her is most often perceived as a demand to do them and demand avoidance prevents her from benefitting from them. As a result her worries and stress are becoming overwhelming for her.

I thought about what could be done to help her access these strategies in a PDA-friendly way so she feels more in control and like she has options to hopefully reduce how overwhelmed she feels by stress and worries.  

I remembered what Ruth Fidler said at the NAS PDA conference last year about visual clarification – “it can be helpful for some children with PDA but will need adapting so it is indirect and has elements of choice” so I thought that having a visual toolbox full of strategies to choose from when she’s finding life hard might indirectly remind her of how to help herself in these moments.

I decided to make the toolbox to have ready to present to Little Miss M as, although she loves art and crafting, she rarely crafts things with a defined design and I was worried that demand avoidance around doing it would hold up having this aid ready to try. It’s just folded A4 card with a card handle attached to the back and a big label which actually has her first name on it [Name’s Toolbox] so it’s clear it belongs to her (this may be too direct for some PDAers and may need a more generic label to de-personalise it but for Little Miss M this type of ‘personalisation’ isn’t a demand (yet) and owning things appeals to her).

I made a list, which I printed and individually cut out, of all of the calming strategies which she has inadvertently used and enjoyed at various times in the past and ones which are known to be calming or stress reducing which I thought might appeal to her. I didn’t stick them in until after I presented the idea to her so she had choice and control over which ‘tools’ to include in her toolbox. [As it was she chose them all.]

Toolbox collage

I presented the idea to her very carefully so not to make it a demand and hoped the novelty of it would be appealing enough to help too. I chose a time when her anxiety was low and I put loads of emphasis on the choice aspect of the toolbox and that it was her toolbox to use as and when she wanted to.

It’s early days but so far she’s chosen to use it at least once every day, at a time when she has felt stressed or worried about something. One time or another she’s chosen all of the strategies and they have all helped her to relax and forget about her worries at the time. She’s thought of some new strategies to add in too and although worries and stress still interrupt things, she does seem less overwhelmed and it seems to have given her a sense of empowerment, to know she can help herself to feel better.

She told me we should share this on Notes on PDA for others who have PDA to know about, so here it is. Please share with anyone else who may benefit from creating a similar visual toolbox – it can be easily adapted (I chose a toolbox as toolboxes and tools happen to appeal to Little Miss M right now but it could easily be something else – a book, a bag, a pond, a Pokémon pokeball, any concept which appeals to the person it’s intended for) and filled with personalised strategies. You could also add images to the strategies for more visual clarification if appropriate. For info, here are the strategies currently in Little Miss M’s toolbox:

Toolbox strategies

* I wrote about introducing Tapping/EFT to children in the following post if you’d like more information: The Wizard’s Wish or How He Made The Yuckies Go Away – A book for children about Emotional Freedom Techniques (this is a link to another post on the blog which will open in another window).

Thanks for reading.

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A note on Pathological Demand Avoidance and the price of a day out

Recently Little Miss M overcame demand avoidance and we managed a rare day out. We went to a science museum which we’ve been to a handful of times over the last 3 years. She’d heard they were planning some changes there and wanted to go again before this happened. It was also an opportunity to use their animation equipment to create some stop motion films which she loves. She thoroughly enjoyed herself and the exhibitions and gadgets there but it came at a price.

Getting ready to leave in the morning was difficult. Despite her wanting to leave the house early to get there as soon as possible, demand avoidance kept instinctively slowing things down. We skipped breakfast, teeth brushing and doing anything with her hair and just focused on dressing and going to the toilet. These two tasks, choosing which toys to take to animate with and leaving the house took 2 hours. During that time she was excited and keen to go but also anxious and demand avoidant. We took our time and didn’t rush her, though she still excused herself from the things which needed to be done, delayed doing them and distracted us with chat of her special interests. She managed to do them eventually though and we were on our way.

The journey there was actually really chilled. She was in the mood to play some games on her tablet and listen to some of her favourite music and this time gave her the chance to de-stress a bit from the anxiety around getting ready and leaving the house. We even had a hold up on the way due to a car on fire on the motorway but she was so in the zone of what she was doing, she didn’t even realise. We’d packed a breakfast of her favourite foods to eat on the way but the demand was still too difficult to overcome and she continued to avoid it.

We arrive at the place and she spotted a unicorn Beanie Boo in the open plan gift shop/reception area which she absolutely had to buy. It was the kind of deep-rooted need which if un-met would have become an obsession or fixation which causes major distress. We bought the toy and instantly she went into role-play mode, being ‘Uni’s’ tour guide around the museum. She was overwhelmed with what to do first and with all of the people around and her lack of control over what they were doing. This role-play helped to give her a sense of control over the environment as she could control the outcomes. We wandered around for a bit in this role-play, not really settling on any of the interactive exhibitions there while she tried to get her bearings. We suggested going to the animation area as we thought she’d feel more comfortable and settle there but accepting the suggestion was too much of a demand so we carried on walking around at her pace while she tried to overcome demand avoidance which was preventing her from being able to do any of the fun activities around her.

After a while she suggested we go to the animation area so we headed up in the lift but by the time we got there, even her suggestion of doing the animation became a demand as she then found lots of reasons not to do it straight away. We went with her flow and just walked around upstairs for a while, not really stopping on anything and could see she was becoming more and more anxious about doing what we had gone there to do. As we walked towards the animation area she noticed all of the equipment was being used by other people. The fact she would have to wait to do the animation seemed to help her overcome the demand avoidance around doing it, however the demand to wait took its place and the uncertainty around how long the wait would be made it almost unbearable. She did very well though all things considered. It helped to talk about what her animation story would be about and keep distracting her from the wait with talk of her ideas and general silliness.

Eventually her chosen machine was free. Anxiety was high by this point though and it took her a little while to be able to compose herself and start (she spent a long time talking about the equipment and how it worked and arranging her toys and props). She then asked for her ear defenders as she was struggling with the noise of the people around her on top of the anxiety overload and they seemed to really help as she was able to make a start. She meticulously filmed and edited 4 stop motion animations all together.

After the animation we mentioned leaving soon, so she could get used to the idea. This too was a demand and demand avoidance meant she found lots of reasons to delay the transition including wanting to eat for the first time that day as well as wanting to do some of the other activities on offer there which she had been unable to do earlier. She withdrew into role-play again but as an avoidance strategy this time and became a baby, a tour guide again, a Goddess and a farmer who needed to take us on tours of various other parts of the museum and it took over an hour-and-a-half of flexibility from us and gentle negotiations to be able to overcome the demand avoidance and leave.

She wasn’t able to take any instructions from us on the way back to the car however as her anxiety was incredibly high at this point and distractions and humour weren’t effective. This posed a couple of safety issues in the car park, around moving cars but we managed to get to our car in one piece, albeit stressed but grateful she had been able to walk there (something she has not been able to do due to demand avoidance numerous times before).

The journey home wasn’t as chilled as the journey there. Anxiety was high and even the slightest thing not going to plan or not being exactly how she needed it to be caused a lot of distress and upset including some explosive behaviour. Unfortunately her headphones started buzzing so she wasn’t able to zone out with her DVD player as planned. A cold bottle of water helped to ease things though and she watched her DVD without the headphones on in the end.

Back home with chips and she had de-stressed somewhat, though needed to feel a sense of control over her environment again which displayed through her being controlling and demanding of us for the rest of the evening (and the for a few days afterwards too). We placed zero demands on her until the demand for sleep came around but this was much later than usual with lots of extra requests for things at bedtime. She eventually fell asleep and stayed there until late the following day.

The exhaustion and anxiety from the day out took a great deal of sleep and downtime to recover from and the majority of everyday demands couldn’t be tolerated for the days that followed. It also left her wanting to do more but unable to manage it because in spite of all the difficulties and anxiety, she had an awesome time and so wants to do awesome things every day, however, the realisation that she can’t manage it frustrates her and this affected her mood for a short time. Communicating and processing language was also affected and she found it hard at times to be clearly understood.

My take home from the day was a reminder of just how incredibly hard life is for her and how incredibly proud of her I am for achieving what she manages to achieve. Accessing ‘typical’ experiences comes at what feels like an unfairly high price and I wrote this to acknowledge just how much effort it takes her and others with PDA to overcome demand avoidance and to take part in experiences which so many of us take for granted.

A-Z of Demands

Over on my Facebook page I’m starting a series called A-Z of Demands. Each day I’ll post a different letter of the alphabet, highlighting an everyday demand which, in my experience with my daughter, can trigger extreme demand avoidance and a brief description of my understanding of why. I’ll use the hashtag #AtoZofDemands and put them in this album so they can all easily be seen and shared.

For those of you who don’t use Facebook, I’ll also upload each day’s demand to a dedicated page on the blog called A-Z of Demands (there won’t be notifications sent to you when I do, so remember to visit the page regularly if you want to follow along).

I’m also working on an A-Z of PDA series and have a few other ideas around this theme which I’m planning to do in the future too.

Here’s the first one to get things started – A is for Agreements

A-Z of Demands - A

More information about PDA and advice on how to best support an individual with PDA is available on The PDA Society website:
> Families: https://www.pdasociety.org.uk/families/strategies
> Teachers: https://www.pdasociety.org.uk/education/teachers-guide
> Practitioners: https://www.pdasociety.org.uk/pro…/awareness-matters-booklet

 

A note on the fear (or intolerance) of uncertainty

My beautiful girl is so stressed by the fear of uncertainty at the moment. Demand avoidance is one thing, one very difficult and challenging thing, but this is something else all together. I cannot reduce life’s uncertainties like I can reduce demands and no amount of distractions will take her mind off the uncertainty she is feeling.

She ordered a toy with some Christmas money from the internet. It’s a very special toy which she felt a strong attachment to from the moment she saw it on YouTube. We found one and ordered it but then the uncertainty began – when would it arrive? It didn’t help that this particular toy had a longer than usual wait time (7-10 days). This in itself caused a great deal of anxiety but it was the only option we had for buying this particular toy. It actually took 6 days to arrive in the end but for the whole of that time she wondered and worried about when it would arrive. Would it definitely come of the 7th day? What time of day would it arrive? Would it be there when she woke up in the morning or could it come in the evening? Would it arrive at all or get lost? What if we were out when the postman delivered it? So much uncertainty.

She didn’t sleep well for the 6 days either. She’d struggle even more than usual to fall asleep from the anticipation of whether tomorrow would be THE day (despite me reminding her it hadn’t been 7 days yet). Then she’d wake up early, hoping it was the day it would come. She even woke up one night having dreamed it had been delivered. She talked about what I should do with it if it arrived while she was asleep and then reminded me over and over. Every knock at the door had her jumping up, thinking it would be the toy and the disappointment was difficult for her to cope with when it wasn’t.

All of the uncertainty increased her anxiety through the roof and as a consequence all of her other difficulties were heightened for the 6 days. Demand avoidance, emotional dysregulation, mood swings, communication were all negatively affected.

The toy arrived yesterday and she was thrilled. Unfortunately that wasn’t enough to reduce her anxiety though and it was the most explosive day so far. I had hoped today would be different and she’d be able to start recovering from the effects of the uncertainty but it now seems she is constantly worried about this toy getting lost or stolen. I have of course reassured her that neither will happen because our house is secure and we’ll take good care not to lose it when we go out but she’s uncertain about this and keeps asking if it will be safe.

I just have to keep reassuring her and wait for her to come to the conclusion herself because in the past that is the only way she has settled over such uncertainties (becoming certain about something in her own mind) and be patient and loving with whatever comes while she gets there.

There has been interesting research by Newcastle University which concluded that intolerance of uncertainty could be the root cause of PDA anxiety and I think this could well be the case. Little Miss M needs to feel absolute certainty as well as control. I wrote A note on the need for control and certainty last year and it was helpful to read it back again this week x

The Wizard’s Wish or How He Made The Yuckies Go Away – A book for children about Emotional Freedom Techniques

I’ve been sitting on this book recommendation for a while now, waiting for the right time to introduce it to Little Miss M. The wrong time would only trigger demand avoidance and potentially close the door to introducing it forever (or at least a very long time because of the fear associated with it). After our conversation this week about anger and masking, she’s open to ideas about how she can safely express her feelings so now felt the right time.

I’ve learnt about Emotional Freedom Techniques (EFT) or tapping as it’s also known from the wonderful Lindsay in her Facebook group Peace With PDA and have seen first-hand how effective tapping can be since using it on myself. If an emotion is bothering me or holding me back, I tap on certain energy points, acknowledging how I feel, accepting that that feeling is perfectly natural and use positive words or affirmation to free myself from the negative effect of the emotion and always feel much better. I also find it really effective in bringing clarity to a situation.

Peace With PDA is predominantly a group for helping parents to use EFT to manage their own emotions and difficulties but Lindsay has kindly touched on using EFT with children as well and recommended this book as a way of introducing them to the concept of tapping.

I downloaded the e-book from Amazon onto Little Miss M’s tablet today, a bargain at £2.21. You can also buy it in print and although she loves books, I thought having it on her tablet would make it even more appealing to her as her tablet is one of her favourite things and it’s easily assessable for her to look at wherever we are (her tablet comes everywhere with us). She was curious as to what I was doing so I told her I was downloading an e-book for her to learn about how she can magically let go of her anger and fears. She was intrigued but not yet ready to look at it (she was keen to play with Daddy though). I left it at that and contemplated whether to raise the subject again today or wait until she decided to look at it of her own accord. I gauged her mood and decided to raise it again this evening and asked her if she wanted to read it with me tonight and she said she’d like to do it there and then.

We read the story (she did the voices of the villagers and told me how I should do the wizard’s voice) and it being on her tablet worked really well as it’s somewhat of a novelty for her to read e-books. She enjoyed the story which imaginatively explained how tapping on parts of your body makes yucky feelings go away and she was really engaged with the idea of her finger being her magic wand and using the magic spell words to make the ‘Yuckies’ go away. We very briefly talked about how we could both use the magic spells the wizard taught the villagers, to help with our anger and stress and we’re going to make a map of the points to tap on tomorrow as a reminder for us both.

I’m really hoping the book has planted a seed for Little Miss M to access this simple but effective self-help tool and I’d highly recommend it to anyone looking to do similar. I’m conscious of it becoming a demand if I don’t carefully word how I encourage it’s use but am hopeful that with gentle indirect reminders of the story and how the wizard used it and lots of modelling doing it myself, she’ll start tapping away the yucky feelings she has.

A note on overload and burnout

Life is such a rollercoaster with PDA. Little Miss M can tolerate and cope with life in one moment but cannot in another, going from one extreme to another (and sometimes back again) in the same day. Sometimes we go for days with relative stability, finding a balance that works, before something happens which overloads her and stops her from coping, while other times she remains intolerant to life’s demands for an extended period of time, living on edge and finding everything difficult. There are also times when she just seems to burnout and isn’t able to tolerate what she usually can and life becomes incredibly difficult for her.

Our PDA-friendly lifestyle allows Little Miss M to have a lot of downtime, drastically reduced demands and autonomy where possible and we use lots of distraction strategies to help her cope with necessary demands and the things she want to do. This has a positive impact on her quality of life and wellbeing but it does not eliminate all of her difficulties and anxiety. There are still times when she doesn’t feel in control, moments of uncertainty, difficulties with social interactions and her emotions and other difficulties and confusions associated with ASD which all overload her brain and cause anxiety.

Her anxiety levels fluctuate all the time, depending on how many of these scenarios she encounters and how often (which affect her tolerance of demands and behaviour day-to-day) and over time the overload and anxiety accumulate and take their toll on her. Every so often this results in her experiencing periods of burnout where her brain is exhausted and unable to function as it usually does and all of her ASD and PDA difficulties are heightened and become even more difficult than usual as her ability to cope with life drastically reduces.

It will look different for everyone but here are some key features for Little Miss M during burnout:

Demand perception and avoidance are heightened as is anxiety and she’s more likely to explode with anger and frustration very quickly when she feels a loss of control.

She worries about everything and is nervous and on edge for a prolonged amount of time which really plagues her, making each day stressful and scary for her. She needs a lot of reassurance and comfort but it doesn’t really do much to settle her in the moment.

She really struggles to speak and put some sentences together and stammers and repeats words. I think this is the reason she reduces the number of full sentences she uses when asking for things and will instead use one or two word commands. She also has a hard time processing what people say and often doesn’t answer or respond or takes extra long to do so.

Her sleep is rather restless during this time and she becomes even more demanding of us and needs our full attention all the time.

When burnout happens, she needs time to recover and extra support. We’re sympathetic to her worries and fears, no matter how often she repeats them and do as much as possible on her terms in order to give her brain as much rest from additional overload as possible. Her mood can be low as she reflects on her difficulties so we do lots of things to boost her mood and increase her confidence and self-esteem by making her feel valued and loved just as she is. Once her brain is well rested it begins functioning as usual again and her ability to cope returns and her tolerance levels increase.

It’s no wonder burnout occurs from time to time, her brain is frequently overloaded due to perceiving so many everyday things as a threat of danger and her constant need for absolute control and certainty of her environment and those in it is mentally exhausting. Also, while she’s still young and figuring stuff out, emotional dysregulation frequently overloads her too. We hope in time that emotional maturity and understanding will make a big difference but in the meantime, we want to do all we can to help reduce burnout now by reducing overload and the effects of overload and hopefully encourage good habits which will continue to help her in the future as well.

So how are we doing this?

We reassessed our lifestyle and looked at all the things which contribute to overload.  

Her lifestyle is already geared towards supporting her autonomy and individual needs which we’ve talked about in A note on education, A note on demand avoidance and A note on the need for control and certainty but after some reflection a couple of months ago, we identified some areas where we could make some more adjustments in that respect as well as to reduce the amount her brain has to process at any one time so overload won’t accumulate as quickly.

For us this includes:

Re-looking at the demands which are still present in her daily life and reassessing if any more can be cut out or approached differently and thinking about how to make necessary demands even easier so they have less of an impact on her. This also includes thinking even more carefully about the things we say and trying to cut out language which can put pressure on her.

One demand which has always caused a great deal of anxiety is going to sleep. She has always been her most demand avoidant at bedtime and we’ve been very flexible around this while still trying to steer her towards going to sleep at a ‘reasonable time’. After much deliberation we decided to relax even further on this and let her decide when she goes to bed which could be as late as midnight and falling asleep at 1am. This has removed A LOT of anxiety and overload for her and made bedtime a happier time. Consequently she sleeps later in the morning to get enough sleep and unless we have to be somewhere at a particular time, we leave her to wake up naturally. This one adjustment has had such a positive impact and we’ve since discovered Delayed Sleep Phase Syndrome which we suspect may be a factor as well as demand avoidance.

Addressing how we can help social interactions to become less anxiety inducing for her (see A note on social difficulties).

Having an assessment of her sensory profile to find out if anything sensory is leading to overload and so a sensory diet can be introduced to help. This is something we’re still looking into arranging.

Being more mindful about how much information we give her so her brain isn’t overloaded with unnecessary info which she can’t process. This includes choosing the right time (when she’s not already processing something else or stressed) to talk to her about something or ask her a question so she has a clear mind to process the information, keeping it simple and giving her time to process what we say without pressure to respond straight away.

She’s said that she becomes most stressed when we’re in a hurry so we’re making sure we take our time with everything and don’t hurry her (unless absolutely necessary). We thought we were already doing this but on reflection we found there were still times when we needed to rush or we’d ask her to hurry so we’re much more mindful of this when we plan (allowing even more time to leave the house for example) and when she takes a long time to do something (not asking her to do something faster and allowing it to run it’s natural course and take as long as it takes). There are of course times when she does have to go a bit faster for safety or when time has run out for example but we’re very careful with the language we use in these instances to minimise the pressure she feels.

We’re encouraging lots of things which relax her brain and give it the respite it needs as often as possible. [This can be difficult due to demand avoidance of things we suggest but we plant seeds and place things within sight and do them ourselves and then she can choose to do them if she wants to].

For us this includes:

Encouraging repetition which is incredibly calming for the brain because it knows exactly what to expect next so can relax. She naturally loves repetition of things which she likes so this is an easy one but we value how good it is for her and encourage it when we see she needs some respite and downtime. Examples include re-watching a favourite episode of a TV show or YouTube video, re-reading a favourite book, role-playing the same familiar scenario again and again, listening to a favourite song over and over – anything familiar which remains constant so her brain doesn’t have to wonder what is coming next and can relax.

We’ve learnt how relaxing proprioceptive input is for the brain through this video. Little Miss M loves to move, even when she is sitting so we are encouraging this more. We bought her a rocking chair so she can be soothed by the rocking motion whenever she likes and she enjoys going to our local park to swing and bounce on the bouncy sea-saw for more physical movement (this is often in her pyjamas because the demand to get dressed to go out is too much and doing so would defeat the object of going there).

Anticipation anxiety and worries about uncertainties cause a lot of stress and overload so we’ve introduced this concept from GoZen where she can imagine her own still and quiet place whenever she is worried or thinking a lot about things outside of her control. She really engages with videos on YouTube and this one captured her attention because she loves to draw and use her imagination. This has been particularly good to use at bedtime when many worries can come out, even just wishing it was morning already.
[She has made the concept her own by the way and creates a new ‘place’ each time we use this.]

Drawing and colouring really calms her so we have a variety of colouring pages and drawing paper in easy reach along with an endless supply of her favourite pens and encourage it when we can see she needs some respite.
[It’s taken trial and error to get to this stage – colouring books initially caused a great deal of stress when the colours showed through to the page behind so we photocopy the pages for her to colour now and she feared the pens running out so we have multiple packs stored away to replace them when this happens. We also keep all of her work in folders as throwing it away would upset her too much. Once we figured these factors out, colouring and drawing became a great source of relaxation for her.] 

How’s it going?

It’s been a couple of months now since we started addressing this and Little Miss M has fully recovered from the burnout which prompted us to and we’ve seen a definite reduction in how frequently she is overloaded. Life still throws scenarios at her which cause overload but by eliminating the ones we can with these lifestyle changes and helping her recover from the times she is overloaded, she’s literally in a better state of mind and is gradually becoming able to ‘do’ more in terms of days out and activities with her friends.

Burnout may be something she’ll continue to experience throughout her life due to the complex way her brain works but we hope these adjustments will help reduce the frequency with which it happens (if not prevent it at all) and we’ll continue to monitor and adjust our lifestyle and her support as needed so she has the very best opportunity to thrive.

A note on social difficulties

Little Miss M can be intensely controlling of people in social interactions (including us and extended family members). The more people she’s with, the more in charge she becomes and the more attention she needs. This makes social interactions really difficult. She’ll direct what should happen and what people can do, giving a constant narration of what is allowed, what isn’t allowed, what she’ll do and what others must do, often repeating herself again and again to ensure things happen in a particular way. We find that accommodating her need for control and doing things according to her particular ideas prevents her anxiety from escalating out of control. Whereas if you don’t and things don’t happen the way she needs them to she becomes overwhelmed and overloaded with anxiety and emotional dysregulation.

This controlling behaviour is a sign of anxiety. The anxiety is caused by several factors which include:

  • fear of uncertainty
  • alertness to demands from others
  • a need for things to be perfect (according to her specific ideas).

It’s also important to take into account that her difficulties with social communication are a contributing factor to her difficulties with social interactions too. These include:

  • not understanding or being aware that the other people have different likes, skills and needs to her
  • finding it very hard to predict what people will say or do
  • not always understanding social language
  • requiring more time to process language and information
  • requiring more time to express herself fully

add to this her need for certainty and these factors which can be confusing and somewhat unpredictable become extra sources of stress and anxiety for her. The more anxious she is, the more controlling of the interaction she’ll be.

Given the fact that her brain perceives there to be a threat of danger when she’s not in control and when faced with uncertainty, this controlling behaviour is easy to understand. Attempting to take charge and control the interaction is her way of trying to feel safe when she has such little control of what other people do and the demands they place upon her (bearing in mind that saying no is a demand). It’s also her way of trying to ensure things happen in the way she imagines they will in order for them to meet her expectations and be perfect.

It’s not easy for her to maintain friendships due to this and the interactions she has with others, including our extended family as well as a lot of her interactions with us at home are affected in this way, making them incredibly difficult for everyone involved, especially her. The anxiety she experiences also has a knock-on effect on her wellbeing. We aim to address this by ensuring social interactions become less anxiety inducing for her.

Here’s what we are doing to try and help with this

1. Helping her develop her social skills and understanding around the areas she has social communication difficulties with. Given the additional confusion and anxiety they cause her, this may help but the level of demand avoidance shown under these circumstances and the intensity of her anxiety around them makes this incredibly difficult to tackle. Interactions with others only seems to be getting harder which causes a cycle of feeling less in control and more vulnerable and anxious.

We contacted the PDA society for their advice with this because we were at a loss as to how best to help her and thanks to their advice we have a plan in place to work on developing her skills and understanding in this area as well as developing alternative ways to manage her anxiety (other than controlling people) so interactions can become more mutually enjoyable.

  • We’ll work on this with her at home when her anxiety is low.
  • It needs to be done indirectly so it’s not seen as a demand so we’ll subtly and creatively incorporate more opportunities to discuss and practice social skills and accommodating people’s different interests and needs as well as understanding language and behaviour into daily life and the activities she enjoys. We’ll use things like stories, films, TV programmes, games, role-play and anything else which appeals to her which covers these areas and we’ll carefully and gradually use some of our own interactions with her to demonstrate how everything relates to us so she eventually feels better equipped to be in social interactions.
  • We’re realistic that it will take some time and a certain amount of maturity will probably be required before the social skills can take effect but our hope is that with time this plan will help Little Miss M feel safer and less anxious in social interactions.
  • We’ll also indirectly help her learn other ways to manage her anxiety around other people. She’s currently not aware of how her behaviour is a reflection of her emotions so we’ll start with helping her make those connections by talking indirectly about this in relation to other people and characters in films and stories. Once she can identify her behaviour as a sign of anxiety, we can encourage her to find other ways to reduce and manage it (taking a break, doing a calming activity, talking about how she feels etc.).

 

2. Ensuring social opportunities are suitable for her particular abilities and needs at any given time so they are manageable for her. Hopefully this will also make them much more positive experiences and help break the cycle of feeling anxious about them all. It’s important we remember that her abilities and needs will change as she develops skills and will vary from day-to-day (or moment-by-moment) as she goes through varying phases of anxiety. We hope that being aware of this and adapting as necessary will have a positive effect on her view of social interactions and set an example for her to be able to do this herself in the future.

Areas to consider include:

  • Being realistic about who/what/where/when is best for her social interactions at the present time.
  • Keeping the number of people she directly interacts with at any one time to a manageable amount. This is quite low at present because the more people she is around, the more stressed and anxious she becomes.
  • Keeping the length of each interaction to a manageable time. This is quite a short amount of time at present before she needs downtime.
  • Providing the right level of support throughout interactions and being on hand to help with any difficulties or rising anxiety before they become overwhelming.
  • Incorporating enough downtime between interactions where she can do her own activities to relax and de-stress.

People can help by:

  • Giving her extra time to process information so she isn’t under pressure to respond or act quickly.
  • Giving her extra time to express herself effectively.
  • Communicating clearly.
  • Reducing the demands placed on her and being thoughtful with wording in this respect.
  • Recognising when she may be confused or having difficulty – usually when her behaviour changes and help her however necessary.

If she starts attention seeking or becoming more controlling, people can help by:

  • Collaborating with her, being flexible and understanding her need for certainty and the ways in which her anxiety around this displays.
  • Accommodating her need for things to happen in a particular way if possible.

 

3. Reducing as much uncertainty as possible by discussing the specifics. We’ve found that if we discuss what will happen at the start of something and involve her in deciding elements of what that will be, she is generally less controlling of the actual interaction which is a sign that she is comfortable because she knows what to expect. We need to remember to do this all the time, even with familiar scenarios and hope that by eliminating as much uncertainty as possible, she’ll feel more assured and less anxious. This is also an opportunity to gain insight into any specific ideas she may have already formed in her mind about the interaction and address how/whether or not they can be achieved beforehand which is usually less overwhelming for her than discovering things aren’t as she thought they would be in the moment.

 


It’s really important to remember that when she behaves in this controlling way, it’s because she is confused and anxious and because demands and uncertainty are scary. She needs to have certainty about her interactions with people and have limited demands placed on her in order to function at her best. It’s so important that this is always at the forefront of people’s minds so the necessary adjustments can be made to help make a difference to how much anxiety she feels.