Decompression time

Hi, I'd appreciate some advice from others.... I'm new to this site, so apologies if this has been covered or similar in a thread elsewhere.

My 12 year old daughter is going through the diagnosis process, slowly, and in the meantime school are putting some great support in place for her. She had a major mental health breakdown period after joining secondary school last year (red RAG rated by CAMHS, suicidal feelings, extreme anxiety and stress), but is now settled and happy in herself, and has really welcomed information about autism to help her make sense of her own experiences and what works for her on a day to day basis. We're a lot more tuned in now and it's made a huge difference to me to learn about what triggers stress build up and be able to change how we live to make life better all round for everyone, and to get wider family and close friends on board, reduce the low level disapproval on non-NT behaviours she was on the receiving end of etc.

My daughter has had a couple of (very positive) days back at school this week - all went really well across the board, good friendships, lovely teachers, enjoying learning and a feeling of belonging etc - but yesterday evening for the first time in weeks she was showing her stress experience again, switching into being very edgy and aggressive, saying she wanted to explode the world (shorthand code for stress expression), letting herself be express the stress verbally in an angry way (we both know this is a stress relief expression and as/when it gets too much for me and it's aimed in my direction if I ask her to she will stop and switch back into normal chat mode, when the stress levels haven't rocketed too much).

She's made herself a safe space in the house, and finds gaming and an audio book very soothing and comforting. However when she stops doing this she seems more agitated than ever. Also spending time with me (which she wants, asks for cuddles etc) seems to be agitating too, bringing with it the angry/controlling speaking thing, which gets a bit surreal as she can and will switch in and out of it fluidly, one minute barking orders and the next chatting calmly and aimiably about something 'on topic' such as characters in a story she's interested in. Stories are big for her.

I'm not at all sure whether it's helpful for her to get lost in minecraft/audiobook world for hours on end, or whether the screen thing, done for too long, is making it harder to function when she comes off it (we do the staged exit, have agreed time periods til it's time to come off, agree an exit time together etc to give her control and ability to predict what's going to happen). I wonder if a different quiet activity, maybe just the audiobook and something tactile like craft, which she also enjoys, would be better than loads of screen time.

The other thing is that she's keen to spend the weekend with her friend here - they play very imaginatively together, put on shows etc, and have a great time - but by bedtime on Saturday after time at school in the week this can lead to more melt downs which is hard for the friend as well as my daughter. She does well with friendships generally (certainly compared to her older autistic sister when she was the same age) and this one is very secure and has been very established over years, they spend plenty of time together, so there's no risk that by pulling back at points she's going to lose something important. She is very compelled to have the sleepover and longer contact, until suddenly it's too much and she isn't coping and wants time alone.

This all feels like fine tuning rather than anything else compared to how things were before, but both the computer use thing and the friendship contact when she's already built up a head of steam by being at school are real questions for me - with a non-autistic kid I'd definitely be restricting screen time, encouraging social time outdoors etc, but...

One final question - when she's in stress-release mode, is it helpful to go with the aggressive conversations? They feel like a stress expression and nothing else, the stuff she's saying is kind of nonsense stuff, lots of sequential orders and demands, what me/the world/the cats etc are and aren't allowed to do, an expression of frustration and overwhelm really and a need to feel in control from that place. It can be tiring to be on the receiving end of, and I don't really know if it's winding her up to further stress or a way of getting it out of her system. It's a very different kind of decompression to the going to her safe space and getting on a screen one.

Wishing the summer holidays were just a bit longer, although I'm really pleased things are going so well for her at school, it's just the global environment I think is completely exhausting for her....

Thanks in advance for any advice.

NAS38858 over 7 years ago in reply to Emma

Hi Emma, yes I now look back at some particularly intense distress episodes she had and feel bad that I didn't know at the time what was going on and why - too much suffering - anyway, thanks for your kind words, and for sharing so generously all the process you've been through over the years to get the levels of insight you have today. I will def. PM you if I need more advice in future, cheers.
Emma over 7 years ago in reply to NAS38858

That's really brilliant it's wonderful that you're working so well together to manage it and that she is developing that level of insight already (I agree that it is a bit sad that she can't be as carefree a child as one would expect, but that's kind of the reality of being autistic in my experience and having self-awareness will so help her in the long run). Sounds like you have a really strong relationship and that will really help her.

The "why am I so violent" really hit a nerve with me, I was exactly the same. Meltdowns are scary and exhausting; like your body is on a really aggressive autopilot which then runs off and leaves you to deal with the consequences. Hopefully she will have less of these as she learns to decompress more effectively, she's definitely on the way there.

I'm glad my reply was helpful and that you've made so much progress this morning! Good luck to you both, and feel free to post/PM if you have any questions, etc.
NAS38858 over 7 years ago in reply to Emma

Hi Emma, your reply is so helpful, and your direct personal experience is invaluable - thanks so much for taking the time to write in detail... The pressure cooker metaphor is a really helpful one, and something I'll share with my daughter as we are tackling this collaboratively and learning and experimenting together.

Emma said:
Stress doesn't really leave my brain; it just gets pushed to the back and builds up and up.

That's exactly what she said to me yesterday... I asked if she was still stressed when using the decompression activities and she looked really surprised and said, 'oh yes, it doesn't just go away...'

Emma said:
these things don't really mean anything, there's no real desire or expectation to blow up the world or for the cats to do whatever she is telling them to

I completely agree, however, she has found herself very frightened in the past to the extent that once she locked the cat in the spare room, in case she actually followed urges to throw it out of the window...the meltdown phase was giving her very violent feelings before we got on top of things, when secondary school was relatively new and we didn't understand what was happening or why. She asked me once, 'Why am I so violent?' I had to explain to her that she was not at all an aggressive or violent person, as she consistently showed care for others, but was experiencing these kind of feelings and urges because of the stress build up and consequent melt downs. I think this is so hard really for anyone to live with/comprehend, let alone a child hitting puberty.

The quick-release thing is great information for me, and makes complete sense. What can be a bit bewildering is the rapid switch from that mode to a very calm, chatty mode, almost instantly, if I steer us on-topic to one of her engaging preoccupations, usually about the plot or characters of a story or film. Then back again when we've finished. Although I guess the switching makes it clearer that it is a pressure release activity that can be started and stopped? She also uses audible hyper ventilation breathing which when it's happening seems to ramp up her stress and anxiety levels - but I assume then that this has the same function and is actually helpful, even when it seems that she's winding herself up further?

Emma said:
As a child, your daughter won't have learned to balance the desire to spend time with her friend (and possibly a feeling that she needs to entertain her friend at all times if her friend is a guest) with the fact that she physically needs to take breaks

Actually I think she is starting to get the idea.... which makes me both a bit sad, that she needs to develop this level of self-awareness and self-regulation when she's really young and I'd love it if she could be care-free, and also quite proud that she's able to and has the skills to learn to manage her own states, or start to.

It's interesting that just as you have suggested a weekend routine which builds in the necessary decompression time, I was pondering the same thing this morning - noticing that now she's older she's confident and happy to be left home alone, and in fact over the summer discovered that she loved being in a house alone when she popped next door to look after the neighbours' cats when they were on holiday. She said the peace and stillness were wonderful. With this in mind I think I'll try to make a habit of going out for shopping etc on a Saturday morning so she can have that experience in her own home, and some recovery time from school. It does make me sad that school takes so much of her capacity, and we have relatively little time together because most of the rest of the time she's in recovery mode and needs to be alone a fair bit. i guess that's just the way it goes though.

Re the self awareness and self management - today, after a happy morning of quiet defrag in the loft, she'd then had a couple of hours with her friend and was getting more and more manic and hyper, a sure sign I've learned of the first stages of stress (it moves from there to grumpy, then on into the quick release stuff you discussed). In the past I've just suggested she 'drop down a couple of levels' with a hand gesture to re-enforce the message - today instead I suggested that letting the manic thing run now uninterrupted would probably mean stress meltdown later and prevent the wanted sleepover happening.

Her friend responded like a kid - bit of a moan/face, as if I was making a threat or issuing a consequence, but my daughter thought for a moment, then said much more calmly, 'No, mum's right, what do you think I should do then mum?' I suggested a half an hour of screentime together (although earlier I'd agreed no screentime as she'd done that in the morning). I explained to the friend once she'd gone upstairs what was happening and why, and checked if she was OK with the new plan, which she was. They then had their half an hour and have carried on afterwards with their messing about, making puppets, cooking pizza etc. That feels like very real progress, not just for her but also for me.

So that's it for now....Thank you again so much for your reply and insight, I feel I've learned a lot today with some trial and error combined with the experiences and knowledge you've shared here. Brilliant! How lucky we are to have the tech to support this kind of communication....
Emma over 7 years ago

Sounds exactly like me at a similar age!

So it looks like you are doing an awful lot correctly :) I'm glad you are able to get the school and family on board because that can be a bit of a hurdle.

I did (still do) very much the same things as your daughter when I get too stressed/overstimulated. Stress doesn't really leave my brain; it just gets pushed to the back and builds up and up. There is a literal feeling of internal pressure as this happens, so let's go with the analogy of a pressure-cooker for this one.

I use very similar isolation strategies to your daughter (the screentime, the audiobooks) regularly as a slow-release, recharging process, which we can imagine as turning off the heat to the cooker. It is a long process of cooling down and thus reducing the pressure inside until we are ready to turn the heat on and start again (i.e. re-enter the outside/social world). This requires, for me, that I am able to completely shut off my brain from external stimulation and just get absorbed into a calm, imaginary world. Many things that you would imagine to work for this don't, and some things that work sometimes don't in other situations. I sometimes have to try a few things until I find the right activity, and I may have to do it for a long time to be completely ready to go back into the fray.

I suppose what I am saying is that if she has found the strategies that work for her, I would be very averse to interfering, even if you would want to restrict screentime more in a NT child. It definitely has a different purpose for her and that probably tips the balance towards a net positive effect.

Now the "aggressive conversations", I would say are the "emergency valve", carrying on with our pressure cooker analogy. There are times when you've left the cooker on the heat for too long and you need to release a lot of pressure NOW or you are going to end up with a bomb (an autistic meltdown, in my analogy). I still do/say very similar things sometimes and I did this much more as a child, before I sufficiently fine tuned my slow-decompression coping strategies.
If it's anything like mine, these things don't really mean anything, there's no real desire or expectation to blow up the world or for the cats to do whatever she is telling them to. It's just a way to quickly release the pressure and avoid an explosion. I would advise you not to attempt to stop her doing this, as that might end up being like duct-taping over all the valves in your cooker, i.e. very bad idea) just run with it, draining as it is, and when the emotional pressure is sufficiently low she can get rid of the rest in the normal way.

This way will be less pleasant for her than the slow-release- it's a sign that she's not taken the heat away soon enough and her head is full to bursting- so she will keep learning and fine-tuning her other strategies. You aren't risking her relying on turning randomly aggressive by letting it happen.

Re. the sleepovers, first off it's brilliant that your daughter has that friendship! That relationship sounds very much like me and my best friend (we have been so since we were ten, we're now approaching 30). But even with friends of that level of closeness, I still find that very prolonged social interaction applies a lot of heat to the proverbial pressure-cooker and that I need to de-pressurise in the usual way, which unfortunately does take time.
As a child, your daughter won't have learned to balance the desire to spend time with her friend (and possibly a feeling that she needs to entertain her friend at all times if her friend is a guest) with the fact that she physically needs to take breaks.

Do they have a trusted mutual friend who could sleep over too? Your daughter could then back down a bit or take off elsewhere and listen to some of her audiobook/play a bit of Minecraft/etc. when she feels the 'pressure' feeling (or whatever she has that indicates to her she is reaching her limits, she may need help discovering what this is as emotional self-awareness is not generally an autistic strength) without feeling bad that she is leaving her friend alone.

This is something I do myself and it works well when we have our regular social gatherings at my or my friends' homes. I take breaks in the spare room when I recognise that feeling of pressure, everyone is fine with this and just knows to leave me to it and I return an hour or so later, refreshed, as if nothing odd has happened. You really need it to be a more than one-on-one situation to work that way though, unless the friend is happy to entertain herself for prolonged periods and your daughter is happy to let her do so (unlikely).

The other alternative is to strongly encourage your daughter to reserve Saturday mornings and Sunday afternoons/evenings for dedicated relaxation/alone time if she wants to have her friend there for Saturday afternoon/evening and sleepover. That would be a compromise between time with her friend and her need to have depressurising time at the weekend too. Also try to encourage her to make it alternate weeks, so you get some time with her too.

It's a hard lesson to learn, when you're an autistic extrovert, that you must leave some time to spend by yourself or risk serious burnout. It took me a very long time to get the balance right in that regard (I still sometimes mess it up, and then I have a meltdown and have to remind myself to take it a little bit easier next week)!

Your daughter is definitely on the way though and finding strategies and you seem to be asking the right questions and doing the right things overall. :)