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

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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 anger and masking by Little Miss M

Little Miss M and I had a really insightful conversation this week about a characteristic of her personality which she has been exploring a lot lately as well as anger, PDA and masking. It came from this note which she wrote for me which says “Dear Mummy, Let me tell you a secret: I am… evil! (Don’t tell anyone that I am evil – Mkay?)” and the picture is of me looking shocked. She later said I could share this by the way to help everyone understand.

Savage in me

It transpired that she didn’t really understand the true meaning of the word evil but likened it to her becoming ‘a savage’ when she is angry. She recognised that her behaviour at times is what society could class a ‘bad’ or ‘wrong’ and came to the conclusion that this meant she was evil, just like the ‘evil villains’ in films and comics. The term savage isn’t meant literally either but rather as a dramatic description of her behaviour (one of her favourite YouTubers describes his cat as a savage and I think this is where she picked it up from). For quite a while now she has loved The Joker from Batman and his side-kick Harley Quinn and has enjoyed playing the villain type character just as much as she has enjoyed playing the hero type character in games and shows she acts out. She can clearly identify with and see aspects of herself in both.

She appeared very comfortable with this misplaced evil label she had given herself despite saying she wanted to keep it a secret in her note and I felt that was because she felt really strongly that this ‘feisty’ side of her was recognised and understood. She celebrates that she is ‘different’ to the norm and we encourage her to love herself as she is, so this was obviously a side of her that she wanted to address and embrace with my help and doing so opened the door to much more insight than I would have dreamed possible at the tender age of 7.

Here’s an edited version of what she said in our conversation after we talked about that characteristic and I explained the meaning of the word evil. It’s clear to me that she is talking about masking when she says she hides inside, something she used to do up until about a year ago with regards to demand avoidance (she would mask her demand avoidance in public so she could join in with her friends at home education groups and trips). I realise now that she has clearly started to implement masking again in order to cope in public but it would seem to relate to masking her anger since recognising society’s expectations in that respect and masking her fears so they don’t prevent her from doing the things she wants to do…

“I’m not evil but I am a savage when I get angry. I get angry when things go wrong and when I can’t do things. I’m not in control of my anger, my brain controls that but I am in control of what I do when I am angry and when I’m at home it’s shouting, screaming, kicking, hitting, pushing and throwing things. When I’m in public I feel I need to hide my anger inside because I don’t want people to know how I feel because they will think that it is wrong and if I scream in public it makes me more angry. It’s like the anger and the scream collide and make the anger stronger. It’s my PDA which causes this – if you took out my brain and cut it open you would see all the different areas controlling the different things and PDA would be in the middle. It’s not just anger I hide in public, at my cousin’s party (which was back in August) my brain was really nervous because I didn’t know everyone there and I didn’t know if there would be any surprises but I hid it inside. Do you know why I smiled nicely in all the photos? It’s because I couldn’t be myself and pull funny faces or pose like I usually do because I was hiding inside. I really wanted to go to the party and would have been really sad if I couldn’t – hiding my feelings meant I could.”

I reassured her that it is not wrong to feel anger or any emotion, they are all natural reactions and I promised her I would help her find ways to safely express her anger (and all of her feelings) when they first appear rather than hiding them until they build up so much they explode, which is what inevitably happens and she said “just like Queen Elsa! I AM QUEEN ELSA – I’ve been hiding my anger from people, like she hid her magic and now I can let it go!”

 

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.

 

 

 

A note on stress

When Little Miss M’s anxiety levels are particularly high she becomes very demanding and intense. She’ll want my constant attention whether it be by playing her games or watching her do something, she’ll need to be in constant contact with me, either holding hands, sat extremely close, her leg across my lap etc. or calling out to me constantly to do something or to come when I move to another room. She’ll need everything done for her and will constantly ask for things in a particularly demanding way.

She does some of these things in moderation most days as anxiety fluctuates but when they are particularly obvious and intense, I know it’s a sign that her anxiety and stress levels are very high and she’s in survival mode and only has enough executive function and energy to express her needs in this way.

During these times my stress levels increase too, my patience is stretched and it’s exhausting. The lack of personal space is difficult as well. It’s hard to stay calm when all this builds up inside so I try and express how I feel wherever possible. Saying it out loud or writing it down is good, sharing it with others is even better and respecting my natural feelings to the intense pressure I’m under is so important. It’s only natural to feel stressed under intense pressure after all and acknowledging that and giving myself a break for feeling it helps me to more easily express it, which allows my stress to reduce so I am in a better state of mind and can continue to support Little Miss M to deal with her own natural feelings to her own intense pressure so she too can reach a better state of mind.

You see, she’s only doing what comes naturally to her very specific make-up, just like I am. Her feelings might display differently to mine and not in conventional ways and may be triggered more often than mine and by less obvious pressures but they are no less real and deserve the same respect and compassion mine or anyone else’s do.

I value my moments of stress because they give me a glimpse into how Little Miss M feels and help me appreciate how difficult things can be for her when conditions aren’t just right for her needs.

The stress caused by the pressure to be constantly available for her during this time and the lack of personal freedom I feel, must come close to the pressure she feels from everyday things which are out of her control.

I see life through her eyes for a moment and this inside knowledge serves us both well. She’s better understood which leads to more compassionate support for her and I apply the compassion I have for her to myself, ensuring my own feelings are honoured and respected, making everything easier to deal with.

There’s lots of other ways to combat stress but, for me, this mind-set is the most beneficial. Living with PDA can be challenging and stressful for both parent and child but acknowledging and respecting these natural feelings and being able to express and share them with compassionate support enables us to push past the resistance stress can cause in the moment and using my own experiences of stress to see my child’s perspective keeps the compassion flowing for her and for myself.