A note on the need for control and certainty

Demand avoidance isn’t the only difficulty arising from the anxiety-driven need to be in control which encompasses PDA. Any uncertainty or loss of control is perceived as a threat of danger that causes just as much anxiety. As a result, Little Miss M cannot handle uncertainty or things not happening how she wants them to; she needs to feel absolute control and certainty of herself, her environment and of situations otherwise anxiety and emptions overwhelm her. The level at which they overwhelm her fluctuates as her overall anxiety levels fluctuate.

Things not happening according to her very fixed ideas and uncertainties around a situation cause her anxiety to escalate quickly to a point where she becomes overwhelmed with emotions the instant she realises it has happened.

I imagine a situation where I’m the most worried I’ve ever been about an outcome, or a situation where all my hopes and expectations are pinned on a particular outcome, something I dreamed of or wished for and it doesn’t work out and I feel the most disappointed and let down imaginable  – that helps me begin to understand how every single uncertainty or thing which doesn’t happen according to her fixed ideas feels for Little Miss M but add to that the fear of not being in control and not understanding her emotions and it’s easy to see how easily overwhelmed she can become.

This can display as anger, frustration, fear, panic or intense sadness and can be directed at other people, objects, herself or the world in general. Things like a game not working on her tablet, the Wi-Fi dropping out, other people not doing what she wanted them to do or doing things she didn’t expect (including using a different cup than she expected for a drink or not choosing the pair of socks she had in mind) or not being understood or able to say or do what she needs to say or do, not knowing how long something will take to arrive in the post or where a missing item could be as well as numerous other hiccups and uncertainties in everyday life.

These situations can only be solved by putting things right according to her fixed ideas of how they should be and the uncertainty during the time it takes to put it right is unbearable for her, her anxiety soars; she can’t concentrate on anything else and cannot rest until she is satisfied with an answer or solution. It’s during these times we really see the sudden changes of mood referred to as Jekyll and Hyde moments. She can suddenly explode with intense anxiety and emotions when something goes wrong and can become calm or switch to happy and go back to what she was doing almost as quickly when they are put right, though she is left noticeably fragile for a short while after particularly upsetting situations and needs more attention from one of us to feel safe again. This is displayed in her being more demanding for a short time while she regains a sense of control. Some things though just can’t happen how she wants or imagined them to and they can easily turn into sheer panic as she realises they are out of her control.

This sheer panic caused by the uncontrollable and uncertainties is the biggest difficulty for us all. So many situations are out of our control and they really rock her world. She has no natural instincts to protect herself from the threat which her brain perceives at these times, unlike the threat of a demand which triggers demand avoidance or the threat of the unfamiliar which triggers her escape into fantasy, the threat of the uncontrollable and uncertainty has no natural coping strategy and she’s left in her anxiety as it increases beyond what she can handle so panic sets in. As parents we want to protect our child from this state of mind and reassure her to make it go away but unless it’s something we can fix with exactly what she needs, our words and comfort aren’t enough to stop the panic. Her need for control turns any solutions which aren’t exactly what she needs into demands which she’ll resist or we don’t have any solutions anyway because we can’t possible predict the future so don’t have the answers she needs. We feel powerless to help because she avoids the demand to do the things we know will help calm a panic attack and no distractions will deter her from her course of thinking so we just have to ride it out with her until she regains enough control over herself to be calm again. She is gradually becoming able to talk herself round. It takes a while but eventually she will tell herself something which calms the panic, it might be a fantastical idea which she believes will solve it or she might tell herself not to worry about it. Whatever it is, she has to come to that conclusion herself and that’s not easy.

Situations and events can trigger this panic but they can also come out of nowhere when she’s feeling particularly anxious. She’ll start panicking about all the random things which are out of her control in life. Things like a toy she lost years ago, whether or not we’ll live in our current home forever, who will die first in our family and getting older and all the changes around this because they are all so out of her control. It could be anything which she becomes aware of having little or no control over or cannot be certain about but time passing seems to be one of her biggest worries when anxiety is high.

So how do we help her with this?

We try to pre-empt potential causes of overwhelm and prepare her for situations which might be out of her control, explaining we don’t always know what the outcome will be but it might be this or that, leaving things as flexible as we can when we know they can’t be controlled otherwise she’ll expect things to happen exactly as you say. If we sense that she is expecting something to happen in a fixed way or we know something might not be as she’d expect, we explain why things might not be able to happen in that way so she is prepared and deals with any anxiety about it beforehand (which is usually less overwhelming than discovering things aren’t as she thought in the moment). We also look out for situations which could trigger her and decide whether her anxiety is up to how out of her control they will be and may or may not take part or go.

We always try to remember her reactions are a sign of her panic and anxiety, and support her calmly and with understanding through these difficult times. And on occasions when one of us is on the receiving end of her anger, we try not to take it personally and support each other with remembering that she does not naturally know what other children know about how to behave and is very confused by her emotions. Autism affects how she understands and interacts with others and it will take time and creative thinking to help her with this.

As far as demand avoidance will allow we are doing what we can to try and make the emotional overwhelm and panic she naturally feels from uncertainties and the uncontrollable less distressing for her and helping her understand her emotions better and how she can express them more calmly.

We talk indirectly about how we can express our emotions safely and calmly by using role-play and talking about other people’s behaviour (often characters in books, films and TV programmes) when they feel similar emotions or draw comic strip conversations with her to help her understand how others feel and have learnt a lot about how she feels in certain situations while doing these also. We adapt how these are done to allow Little Miss M as much control as possible over doing them while still getting our message across. She might 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.

We acknowledge and validate her feelings around moments of high anxiety and panic and show her that we love her and encouraging her to love herself at these times. This plays a big part in preserving her self esteem so she doesn’t get into a cycle of feeling more anxious about being anxious

We hope that she’ll start to feel more in control of some of the unavoidable hiccups she encounters by building up her knowledge of how to resolve things and this will reduce the anxiety she feels when they crop up.

We plant seeds by saying out loud what solutions there are to problems (ours and hers) so she indirectly hears them and can gradually pick them up and learn them for herself.

We ask her if she can help with ideas to solve ‘our problems’ (things we really know how to solve but pretend we don’t). Sometimes she chooses to help, sometimes she doesn’t but we never insist. Often we’ll just ask the question out loud and see if she offers advice.

We empower her with the knowledge that she has great ideas and can overcome anything. Little Miss M likes to hear that she had a great idea but I know not all children with PDA can take this kind of praise so an indirect approach (telling another person) may suit them better.

While writing this note we came across this idea to help with problem solving and are giving it a go. You trace your child’s hand on a napkin or piece of paper. Have them think of five of their greatest strengths and write (or draw) one on each finger and when they are faced with an adversity, they can pick a finger and use that strength to begin resolving the problem. I’m hoping this will be a good distraction from the anxiety and help her to feel more in control of solving problems. The strengths Little Miss M came up with were using her imagination, having good ideas, being active, being creative with her drawings and being kind.

PDA is a lifelong condition and the need for control and certainty won’t disappear but our hope is that with this support and guidance and all the work we’re doing around reducing her overall anxiety by keeping demands to only necessary ones, she’ll be more able to cope with uncertainties and uncontrollable situations over time and with age so they are easier for her to deal with.