I’ve been thinking about meltdowns for a few reasons in the last week or so.
- A PhD student, @lizith, tweeted me asking if I knew of other words for meltdowns. Her supervisor thought it was a colloquial expression and she should use a different word in her thesis.
- A colleague asked if I thought the Louis Theroux ‘Extreme Love‘ documentary was a reasonable portrayal of the more extreme end of the autism spectrum (in particular, the part where the mother flips the son onto the floor and restrains him using her body).
- LB is about to go on school trip again that involves a day trip to France.
I replied to @lizith saying that I thought ‘meltdown’ was a very widely used and understood term by parents of autistic kids. I don’t think I used it myself before I interviewed parents for a project, but their consistent use of it made perfect sense to me. I asked one mother to describe what she meant by it. She replied;
Sometimes you can see the gradual build up, you can see if he has had a particularly bad day because he will sulk and he will be moody and you know that sort of come seven eight o’clock at night you can really be in for it. So then it is trying to distract him and sometimes that works and sometimes it doesn’t. And then he can go up to his bedroom and refuse to go to bed, start throwing things, jumping on his bed, sort of banging on the ceiling. Its – it is like a monster exploding. And it is very unpleasant and twelve months ago he did get very physically violent where sometimes we did have to physically to restrain him and use time out and we did at our previous house sometimes have to lock him in his room and that was on recommendations from one of the specialists at the [hospital]. We didn’t like doing it but there were times when we had to do it for everybody’s safety, but fingers crossed we haven’t had to do that for a while now.
So this extract answers 2. Yes. Parents do have to restrain their children sometimes. And it’s something that isn’t really discussed much or widely known about, which is one of the reasons I liked the Louis Theroux documentary. There is such a complex layering of guilt, despair, isolation and sadness involved in having to physically restrain your child. It seems counter-intuitive to parenting. While the rationale for doing it is largely to protect your child from harm, it’s also very upsetting to be attacked by your child. Intentionally or otherwise.
We had years of meltdowns with LB. I’ve discussed some of them before on this blog. In supermarkets, reversing the car, at home. It was never pretty and occasionally physically painful. It’s also hugely distressing and unsettling for siblings to experience. The extract above captures the unpredictability and helplessness that parents can experience once their child/children tip over into such distress. I can remember psychologists and other professionals suggesting I video a meltdown so they could actually get an idea of what I was describing. (They never offered a scrap of useful support). The thought of videoing his distress was as upsetting as experiencing it firsthand. Professionals should really have a better understanding of meltdowns, and how children, and their parents, experience them.
So to 3. LB has learnt to manage his distress so much more effectively over the years. He can cope with a lot of the things that caused meltdowns when he was younger. He’s done a lot of the learning and groundwork himself really, bless him. Finding his way and negotiating a lot of the stuff that’s thrown at him. His school environment has helped him enormously, and the teachers/TAs’ consistent, affectionate engagement with him. Occasionally though, something unpredictable happens and ‘meltdown’ doesn’t quite capture the horror of what happens in the, for him, adult-like version of it. Like when he was told to take off his shoes by customs officers on his day trip to France last year and he thought they were going to steal them.
I’m glad I wasn’t there on that occasion.
I’d still welcome any sensible advice or suggestions by professionals but I won’t hold my breath.
I missed this at the time, but coming back to it now a couple of thoughts.
My thesis (still awaiting examination) focuses on what I describe as ‘struggle/fight metaphor’ in special needs. Discussion often focuses on the adversarial nature of the SEN formal systems, but omits the level of everyday struggle including dealing with ‘inappropriate behaviour in public places’ and meltdowns in public. Was so glad to find your discussion of meltdowns and public surveillance 🙂 – you get several mentions in thesis.
Thinking about meltdowns – and a different question perhaps. My son is now a young adult. Whereas we had our fair share of meltdowns when he was younger, when he was seventeen he began to have what appeared to be fits. Epilepsy was ruled out and possibility of panic attacks suggested, but never confirmed and the promised CBT never materialised. These episodes have continued and we have identified some triggers that seem stress related – either situational or physiological (e.g. attending a social event and meeting a large number of girlfriend’s family or simply not drinking enough fluids). These are situations which would have resulted in a meltdown when younger and I just wonder whether rather than acting out his stress, he is now expressing it differently – and in an equally disturbing way. The result of these episodes is limiting activities my son can participate in – he cannot learn to drive, he needs to wear an advisory bracelet when travelling, he risks accident climbing high ladders on his theatre production course.
Not sure if there is any forum where this is discussed. My son does not want to discuss it – he wants to get on with life rather than being labelled with his deficits!
That must be very hard for him, his girlfriend and you. Have you had a look at the ASD Friendly forum? There is a lot of discussion there about meltdowns and there maybe some talk about alternative forms in young adults. From what I remember from my study, the older kids could sometimes learn to manage the sensory stuff in time. Total rubbish about the CBT not materialising. Does he like animals? I’m beginning to think ‘support’ dogs are a great idea for young people though obviously raise their own issues.
Saw your link to this post. V interesting, plus Liz’s comments about changes at 17. We are thinking about what’s going on with our 16yo daughter, how she’s coping, also challenging neurologists to view her outside standard autism definition.
She has never had much of a standard melt-down patternWe think, have suggested to neurology, she has changed recently. Reactions more like Tourettes :lots of control, normality, ten a single question flips her in a split second. On a good day, despite pain from an attack (often on me, mum) she will immediately say sorry, like she had no control.
Still pondering, thanks for contributing to this issue. I was reading as my husband was dealing with consequences of her shoving me, which some would say stemmed from a normal teenage mood plus her not feeling well today. H