So the summer holidays are upon us. For our family, there is a marked relaxation and easing of anxiety as L positively relishes not going to school. We say a definite goodbye to evening meltdowns for six weeks, and whilst it doesn’t stop L being a bit of a grumpy old man at times due to his sensory processing difficulties, it’s lovely to see him in his element, at home, playing. Over the summer he doesn’t have to be like everyone else. He is as free as a bird, and that bird is magnificent. He is the L he is meant to be. It’s a time to have fun together and strengthen our bonds before the school transition casts its inevitable clouds in September.
I could get lazy and complacent over this time. It’s so nice to have him back during the holiday that I could ease off too much on putting in the groundwork for the new school year. I also feel that I am reaching a good place in my own understanding of L’s autism which is making life easier. This is without a doubt because of my reading, and it is some of this knowledge that I need to crystallise and share with school.
A number of people have said I have been reading too much but these people have, without fail, been people with little direct autism experience who underestimate the complexity of the subject, and the needs of the individuals concerned. Imposing any cap on the extent of your knowledge is, I feel, doing a spectrum child a grave disservice because the more you learn, the more you realise how little you knew, and the more you are able to reach out and bridge the gap to your child. Knowledge gives you a much sturdier foundation from which to facilitate the mutual understanding which is necessary for acceptance in a neurodiverse world.
I feel so grateful that I have recently found a core group of authors who cover the range of topics I most need help with and who are between them giving me a sound foundation from which to proceed. The authors of whom I speak are Jennifer Cook O’Toole, Linda Woodcock, Andrea Page and Brenda Myles Smith. There are many other brilliant autism authors out there and I haven’t yet had time to read all the books I want to but these women have proved themselves invaluable.
I have already discussed Jennifer Cook O’Toole’s ‘Asperkids - An Insider’s Guide to Loving, Understanding and Teaching Children with Asperger Syndrome’ (Jessica Kingsley Publishers 2012) in a previous post and she has two new books due out soon (already on pre-order). Her books have shifted my perspective and given it such a positive and purposeful twist. I am proud to be able to call my son an ‘Asperkid’ and can’t wait to move forward with her ‘can do’, out, loud and proud focus.
I have also mentioned Brenda Smith Myles in another post. She wrote a chapter with Diane Adreon in the book ‘Children and Youth with Asperger Syndrome’ (Corwin Press 2005) which I found immensely helpful (the book was one from the library, and she has many more books, some of which are aimed more specifically at parents which I now want to read). The information I found there was crucial in validating and normalising my experience of meltdowns. It has helped me to take a step back and see meltdowns in an almost scientific way – to recognise the signs of one starting, take measures to ward them off; cope more effectively when one occurs; and proceed more gently during the ‘recovery stage’. I have incorporated so much of her wisdom into our evenings and she really helped me to turn a corner.
Both these two wonderful women are from the USA and I feel very blessed to be able to hold onto those hands held generously out from across the pond.
A few weeks ago I also discovered something closer to home which complimented what I found so useful in Brenda Smith Myles book. The approach of Linda Woodcock and Andrea Page in ‘Managing Family Meltdown – the Low Arousal Approach and Autism’ (published in 2010 by JKP) is so gentle and respectful and manageable (well – I do slip up a bit when tired) and so damned useful. I am hugely grateful to JKP and the regular emails I receive updating me on autism related books because I don’t just happen upon these gems by chance.
The book began, as many do, with an introduction to autism, which was chatty, informal and easy to read. It summarised our experience in an instantly recognisable way and clarified some common misconceptions. I found it useful that they catergorised three types of autistic child (based on a study by Wing and Gould in 1979) – ‘passive’, ‘aloof’ and ‘active but odd’. L definitely fits into the ‘active but odd’ category and although those labels are quite simplistic, and the word ‘odd’ doesn’t sound very nice (I prefer to think of him as loveably eccentric), it did help me to think of it like that. L is ‘active’ – he is a sociable young man; he does approach other children and play; and therefore he does differ from a common public stereotype of autism. Teachers see the ‘active’ L playing on the playground, and they assume that everything is okay. With almost 180 children running around them what they consistently fail to see (and what I get to see and adore at home) is the fabulous ‘odd’. It’s the ‘odd’ that can make interactions challenging for L and those he plays with.
When describing the ‘triad of impairment’ in Autism, the book clarifies what many publications get wrong – the ‘lack of imagination’ issue. So many over-simplified accounts state that individuals on the Spectrum lack imagination and yet I observe little L as having a highly active imagination in his fields of interest. It is ‘social imagination’ that he has trouble with because he can’t yet grasp that other people aren’t thinking just like him and don’t know what is in his head. Playing with him can, depending on the game, be a minefield and anyone doing so will risk getting constantly chastised for inadvertently veering from his ideas.
In fact, L’s imagination is SO powerful that he has usually mentally mapped a colossal script for his play and then can’t bear to see that script damaged and not come to fruition. Often when playing with his beloved Playmobil and I tell him it is bedtime, he will look at me frantically and tell me that he needs more time because the police are just about to perform an arrest or some other important element is about to occur. It would be cruel not to let his story play out and yet that’s what happens when he plays with other people. The poor love is desperate to share his ideas and excitement but other people just get in the way and mess it up, and he gets cross, and it all goes a bit pear shaped, and I see that play out over and over again. Games quite often break down and other children may play with him in shorter bursts to preserve their sanity. His self-esteem plummets then as he feels that he isn’t liked.
Look a little closer school.
What made most sense was the book’s focus on arousal. I had asked L’s psychologist if meltdowns could be due to overly high levels of internal arousal because I remembered something from my first Psychology degree (I graduated from that one nearly twenty years ago – how time flies) about autism and arousal. Unfortunately, we got distracted and never followed up that discussion. Instead I was pushed down the only route available in Worcestershire – the classic and all invasive Triple P parenting model. It didn’t help because it takes no account of autism. Pre-meltdown it is obvious to me that L is in a state of high internal arousal. Sometimes this may be caused by increased anxiety from a day at school; sometimes he is exhausted from the sheer effort of getting through a school day and is at saturation point; sometimes he is very excited; sometimes his sensory processing problems mean that his level of arousal from sensory stimuli such as hearing or smell is heightened; sometimes his theory of mind triggers a strong sense of moral outrage that someone has inflicted a ‘great wrong’ on him (intensely arousing for L); other times it almost feels like he needs a fix, like a junky ( because his internal levels of arousal have dropped too low).
Meltdowns happen for so many reasons but it is clear that L is on a daily rollercoaster when it comes to arousal. This book makes sense in that it promotes the maintenance, at home, of a low level of arousal to avoid the start, and escalation of ‘distressed’ behaviour.
I loved the early part of the book which invites us readers to think about our own expectations of behaviour and parenting and how these are influenced by our particular experience of being parented. It makes you stand back and look at what you are reacting to and why, and think whether your reaction is really necessary or is just a conditioned response based on upbringing, societal conventions and the expectations of others. I can think of many times when we have reacted differently to L in public or in front of our parents because of a sense of being judged or being expected to give a certain response. We have gone against our tried and tested approach because we have bowed to the pressure of the ‘done’ thing’ instead of respecting L and his different needs. Autism parenting requires a good digging out, airing and discarding of many of the values that we hold dear. It is actually rather enlightening and liberating.
The book gives good, practical home advice such as moving possessions you really care about to safety so that you can chill a bit about things being damaged if your child has a destructive moment. It made sense. It gets to me when L destroys things, especially if they are big sister M’s things. I react and get cross and it adds to the overall arousal level in the situation. It encourages you to lower your own levels of arousal by just not minding so much about things. The theory is that when you mind less, you react less and the overall arousal levels stay lower so your child’s distressed behaviour is less likely to escalate. At first you may have to pretend like mad that you don’t mind but I found that when I got into it, I started to quite enjoy not minding and got much better at it – and blow me down, it started to work.
Recently L has been throwing water at me a lot when heading towards meltdown. I admit I largely have myself to blame. The first time he did this to me when everyone’s arousal levels were high, I threw some back, unfortunately modelling that this was somehow acceptable. I find it quite humiliating to be stopped in my tracks as I try to manage a meltdown, by having a cup full of water thrown into my face, soaking my clothes and temporarily blinding me. I usually react by saying, ‘Oh L, don’t do that to Mummy, that’s really mean. I’m all wet now’. At that point things might escalate. If he does it again I might react more crossly as I simultaneously try to wrestle the water vessel from his hands. At that point L’s behaviour is likely to become more physical and he gets over-stimulated and can quickly begin the slide down the path to full-blown meltdown.
Things changed after reading the book. One evening, bedtime was going according to plan when L went to the bathroom for his pre-bed wee and came back brandishing the new Tesco water squirter ( that I perhaps foolishly got him to encourage him to have more baths). He squirted the contents into my face as I lay snuggled in his bed waiting for our goodnight cuddle. I gritted my teeth and tried very hard not to seem the slightest bit bothered. I acted fairly disinterested, not ignoring it completely but not acting like it was anything important. I thanked him calmly for cooling my face. He did it again and carried out another four more face squirting sessions. Each time I just took it. In conventional parenting he would probably have been on the naughty step by then (and any attempt at doing that kind of parenting would involve progressing straight to meltdown without passing ‘go’).
Oddly, as the soakings continued, I began to relax. Getting wet doesn’t actually matter in the grand scheme of things does it? I didn’t allow my own levels of arousal and anxiety to grow and impact on L and so a strange thing happened … L suddenly lost interest! He hadn’t got any particular reaction, good or bad so his arousal levels hadn’t changed. Any unconscious motivation there may have been wasn’t satisfied either (the book also gets you to think about what reward there might be to a behaviour but stresses how carefully this will have to be worked out for each child and each situation as these can be incredibly subtle). Most importantly, there was no meltdown.
Afterwards, I carried on as if nothing had happened and we resumed our bedtime routine except that the cheeky monkey held me off at arms’ length during our cuddle so that I didn’t get him or his bed wet. In the month or so since that night, he has only used water once and that was half-heartedly.
Woodcock and Page give very similar advice to Smith Myles, on what to do when a child moves into what she usefully calls the ‘rumbling stage’. They suggest reducing the number of demands or requests. This is also something I have found works brilliantly. Teeth cleaning was always a flash point but instead of asking L to clean his teeth and keeping on asking until eventually I have to hold him down and force the issue, I began to hold the brush absentmindedly in my hand whilst reading to him. He started to just automatically take it after a few minutes and begin brushing. I was quite astonished the first time it happened. I also introduced baby soft toothbrushes and one with a flashing light which he trusts to time an accurate minute. Apart from two times where he went to bed without doing it because he was just too tired and grumpy, we haven’t looked back and the lack of obvious requesting has been a rip-roaring success.
I progressed onto other things with the same success. If he’s a bit edgy I now verbally request very little. My lack of verbal demands stops him feeling pressured as I am not fighting for his attention when he has reached saturation point in the day. Instead I might just lay his pyjamas down next to him while he does whatever he is doing to relax. I sometimes give him a card with a picture of a bed on. Ever since reading Brenda Smith Myles’ book I will stop talking as soon as he shows signs of agitation. I have relaxed much more myself now and whether its 7pm or 8.30 pm when he goes to bed, it is generally happening with less drama.
The ‘low arousal’ approach seems so much more respectful of the child and their inner state. Instead of trying to impose routine to satisfy my own needs as a parent (as essentially advocated by the conventional parenting approach), I am allowing L to maintain some control over his own needs (something which must be impossible at school). Some nights he needs longer to relax from school than others. At school he faces demands all day. At home he just needs just to ‘be’.
L finds it hard to step into my shoes and see things from my perspective. He can sometimes be prompted to do it as an academic exercise but it doesn’t come naturally. His theory of mind is pure Borg – we all have one consciousness. He runs his life based on his needs – not in a selfish way but in an entirely logical way. He goes to bed when he is tired. He eats when hungry. He snaps when irritated, loves and hates visibly. He doesn’t always care about how the needs of others intersect with his own but he is not being naughty, just a little self-focussed.
And I should just mention that the ‘low-arousal’ approach really is for the whole family and doesn’t just work with autism. As M leaves behind the young child she has so recently been and reaches out towards the wonderful and no doubt feisty teenager she will become, I can see that low arousal will be invaluable. It helps the whole family to take a chill pill and lower the ante and that can only be good for us in warding off future family clashes.
So thank you Brenda, Linda, Andrea and Jennifer, from the bottom of my heart. Between you, you have restored calm, hope and understanding to our house; brought us all closer to each other again; given me a fresh perspective and a more humble heart. There is a huge amount of love in our house and I truly believe everyone feels it. As L would say ‘Ommmmm, diddi dommmmm’.