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.

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A-Z of Demands is complete

The A-Z of Demands is now complete. You can view the entire series via this link: A-Z of Demands. There’s also a downloadable PDF version and the option to purchase a printed set at cost price plus postage.

I’m working on another A-Z series (A-Z of PDA) which covers the features and characteristics of PDA as well as recommended support strategies. I’ll share one letter of the alphabet each day again and it will begin soon… x