Wednesday 15 January 2020

Extreme Anxiety Overload or Meltdown

For lots of people living with extreme anxiety, and those with the Pathological Demand Avoidance profile of autism, it can often be a build up of just a few little things which go on to cause an overload. Sometimes these little things are almost impossible to see or understand, even when you know the person concerned quite well.

Today was just one day which didn't exactly run smoothly for us. I've decided to write about it in a bit of detail here because I thought it might help others spot the signs. Whilst I'm fairly sure no-one else will have had the exact same experience as we did today, I still think that many will relate to it. That's because I know that we have had many other days over the past ten years which didn't quite go to plan.
Sasha smiling in front of ice rink
Sasha, happy when skating at a very quiet rink before Christmas
I'd done the planning in advance; we were going to go ice skating, at a rink which we'd never been to before. Sasha has enjoyed ice skating in the run up to Christmas on a proper (but temporary) ice rink at a garden centre for the last few years and has recently expressed a wish to go more often, maybe have lessons, ideally end up figure skating in 'one of those lovely outfits'. You know, standard tween dream really.

Because Sasha is currently not able to attend school, I guessed that the 'fixed' ice rink might not be so busy during the daytime. I looked at the website and found it was open from 10-12, then I called them to check if there was anything on. I was told that only 4-5 people had been on the ice each morning for the first couple of days this week, and they didn't expect loads more than that. That sounded perfect; one time when we'd visited the other ice rink in the weeks before Christmas there had been a group booking of around 50 young adults and that amount of people made Sasha too anxious to even try the ice. We'd had to wait for a later, quieter session - and waiting is not something Sasha copes with particularly well.

So all seemed to be working out and this morning we headed over to the ice rink. I say that lightly, but in fact getting out of the house is always a big effort these days as our girl does it so infrequently. She was already anxious because we were going somewhere new, somewhere she'd never been before. It's in the next town over, so around 20 minutes away by car and I'd given her a rough time that we should leave, in order to arrive at the rink for around 10 am. I had to explain, when I realised she was stressed about the time pressure, that it wasn't a fixed time, just an 'about, whenever we are ready'. 

And then, she wasn't sure what to wear.... because most days now, she doesn't change out of her pyjamas. When she does wear clothes, it has been the same leggings and lightweight extra thin jumper for the past four months. She does have other clothes which she chose herself, but she's stuck on this one outfit. So why could she not decide what to wear? It's because she knows, or feels, that she should be wearing something different each day. But everything else just doesn't feel right. Because she never wears it. It's a vicious circle.

At the point we were about to leave the house, I mentioned tooth brushing but very quickly realised this wasn't going to be a good idea. We've discovered recently that the taste of toothpaste is one of the things which can bring on the feeling of car sickness for our girl, who doesn't like to travel (or brush her teeth) anyway. So we skipped that (shock, horror. I'd better not tell you that might be well over a week since her teeth were last brushed...) and finally headed off, semi-happy.

Until we got to the ice rink. Where we found, on approaching the counter to buy a ticket, that the rink was not actually open until the public until 11 am because some pros were practicing their twirls (I checked the website, it still showed opening time as 10am but had been updated by the time we left!). It was about twenty past ten at this point (I thanked my lucky stars we hadn't rushed to get there) and I began to panic internally, knowing that Sasha is not great with waiting for anything. Luckily, she came up with a solution herself - the rink is set on a small retail park which also happens to have a McDonalds, and we'd planned to visit afterwards as a small treat for Sasha attempting something new. Instead, she suggested, we could have the fries first!

Fries is all that Sasha eats from McDonalds. Three medium fries is her standard order. We knew (ha) that McDonalds didn't serve fries until 10:30 am, because we once faced that extreme upset of not being able to get them in a morning of need (we'd had to leave a hotel super early one morning after being woken up by the fire alarm at 6 am. Sasha still refuses to stay in hotels now for that reason). We wandered across the road and even had a quick look in the centre with the big climbing wall on the way, to pass a bit of time. We arrived at McDonalds at 10:31 and started to order on the fancy screens... except there was no 'fries' option. Gah. Public service announcement coming up for others who have a need for fries - McDonalds now serves breakfast, which doesn't include fries, until 11 am.

So you can see, little things building up already, beginning to cause a pretty big problem. The story didn't end there, but in order to avoid boring you all rigid, I'll speed the rest of it up. We headed to the supermarket to pass time instead, which was helpful for me because we did need a few things. I also needed the toilet, which irritated Sasha, because she didn't. As soon as we walked in the toilet room I suggested Sasha leave quickly, because it had these hand dryers from hell in there.
Xlerator hand dryer
Can anyone with a business please NEVER fit these super noisy hand dryers?!
Sasha doesn't like shopping so the next twenty minutes were quite painful, not helped by an item not scanning properly and us having to wait a long time for assistance (groan). Eventually we headed back to the rink, knowing it would at least be open now, and I was pleased to find I only needed to pay for Sasha's ticket as I could go in with a free Carer's ticket - something I've talked about before over in this post on my Facebook page as being an important offer for us. Here comes another good example of why.
picture of almost empty ice rink
Lovely, almost empty ice rink
We entered the rink area where there were around six people. So far so good. No sign of the staff member who would give us our hire skates though. So we waited, and eventually had to go back to reception where that staff member sent a request for the other one. One very loud buzz and tannoy announcement later and Sasha was feeling very anxious (bells, alarms, buzzes, anything like that sets her on edge and she instantly asks 'what did they say?' etc). We got our skates and with a fair amount of effort I helped Sasha put hers on. After trying them out and going round the rink once, we realised they were too small though, hurting all our toes. So I had to go back (cue more waiting) and get the next boot size up - but the boots were not in half sizes, so now they were too big. Sasha tried another circuit of the rink, but it was too late, the damage was done. She came off the rink and sat with her head in her hands then her fingers in her ears as I tried to find out if there was any point in us staying. There wasn't.

So that worked out at just over £10 for two laps of the rink, about five minutes of entertainment at most. Oh joy. Of course I didn't point this out to Sasha; more important than that were the losses of a recently found passion and a reason to leave the house. The knowledge both that Sasha was unlikely to be able to write this off as 'just' a bad/unlucky day, and that she wouldn't want to go again, made tears prick my eyes.
four medium fries
We headed out and over to McDonalds where even more fries than usual were determined necessary.

For our youngest girl and probably many other autistic people, the 'not going to plan' bit is a hurdle too far and what can ultimately lead to overload. Being able to accept and react positively to unexpected change is possibly a natural trait that some of us were born with. Or maybe it's one of those skills which comes by osmosis, when young children are faced with changes and they learn by example that there's a calm way to deal with them and find a solution. Certainly it's not something I've ever had to teach our older daughter who is not autistic. Sometimes a change of plan may not be welcome but for our eldest it's not the end of the world; it may make her feel glum or irritated, but she deals with that emotion and moves on to what needs to happen next.

In a previous post I discussed whether rewards and consequences work for children with PDA, and I shared that our autistic girl didn't seem to learn from these in the same way as neurotypical children did. This issue of not coping well with change is a similar one; it's very difficult to teach, especially when each circumstance is different and the learning is not easily transferable to a brain which is not wired in a way which makes that kind of connection. I wish these 'little things' didn't have such a big effect on our younger daughter but that's just life and it's how we react to them and the anxiety they cause which matters.

To find out more about our experiences, please check out our 'About Us' page. If you are looking for more information on Pathological Demand Avoidance, the posts below may help.

What is PDA (Pathological Demand Avoidance)?

Ten things you need to know about Pathological Demand Avoidance

Does my child have Pathological Demand Avoidance?

The difference between PDA and ODD

Strategies for PDA (Pathological Demand Avoidance)

Pathological Demand Avoidance: Strategies for Schools

Challenging Behaviour and PDA

Is Pathological Demand Avoidance real?

Autism with demand avoidance or Pathological Demand Avoidance?

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  1. I relate to so much of this. It's a brilliant description of how hard things are for kids with autism, or just with anxiety. It's the stupid little things that aren't as they should be, and the everyday annoyances that completely overwhelm our kids. I'm so sorry that Sacha's efforts weren't better rewarded today. And I am continually devastated by the failure of our government to even attempt to meet the needs of autistic kids. Every parents group I have been to is full of knowledgable but heart worn parents fighting for the most simple reasonable adjustments, let alone the provision that would let these kids thrive. This huge failure, faced by these uncounted thousands of children and adults, has got to amount to institutional discrimination, hasn't it? We're all so busy coping individually, at home, we have no space to fight as a group.

    1. Yes, a lot of fighting going on but as you say, so many of us get worn down by it :(

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  3. Thanks for the excellent article, we relate completely although ours is much younger we have the same issues. Thanks for raising awareness for others on your blog, it is inspiring. The Anonymous poster above must have had such a sad life.

    1. Thank you! Glad not everyone is as angered by our lives as that anonymous person above. Comment removed because there's no need for that anger here :)

  4. Such an eye-opening post. You put in a lot of effort to provide a positive experience for your daughter and so many things went wrong. It would be wonderful if ice rinks provided some sensory friendly times. P.S. You describe that brand of hand dryer perfectly. That brand hurts my ears and I find myself running out of the restroom after 2 second of drying, wiping my hands on my clothes.

  5. Ugh, sorry that so many things came up to derail the outing. I can definitely relate. Can also relate to the worn down feeling.


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