Making the world an easier place for our children
This series of linked posts are largely based on my experience with my son, who is verbal and has no intellectual disability. After I abandoned using rewards and sanctions I started to explore different ways of reducing anxiety, increasing emotional regulation and improving problem-solving skills as a way to address explosive and reactive violent behaviours. I started off with a general idea of what I was doing, sometimes drawing on my professional and academic experiences, but mostly going with what felt right. It was often later that I found books and advice from ‘experts’ which supported (and legitimised) my seemingly eclectic approach.
I looked to ways we could change the world around him and I looked for ways to help him develop the skills he would need to navigate the world. It was not about changing my son, it was more about making space in the world for him and equipping him for the journey.
These posts on ‘managing violence’ started as an outline for one post and now, as I write this piece, I realise it will be a three parter. The feedback I have received about part one demonstrates how important this topic is. This post will focus on getting the foundations right. We cannot begin to support our children to develop skills unless they are in a fit state to learn.
If we accept that anxiety is at the root of our children’s more extreme behaviours, we have to address that anxiety. I see little purpose in addressing behaviour without the right foundation. None of us learn well when stressed.
Changing the world
Changing the world for our autistic children happens at both a macro and a micro level. I think we all as humans have a responsibility to do what is within our abilities to try to make the world a better place for our children (for all children) to grow into. We might do this by raising awareness, educating people, upholding values of acceptance and justice, whilst encouraging and embracing diversity. Every little bit helps.
In our day to day lives we might have to make changes to our homes, our lifestyles and our plans to meet the needs of our children. We must find ways to make the world our children inhabit easier and less overwhelming. For my son this means predictability, structure, routines and meeting his sensory needs.
Controlling the world
Most standard parenting courses for parents of autistic children recommend routines and structure. These are supported by visual schedules, timetables and lots of planning and preparing. We get shown examples of complex schedules, beautiful symbols, pictures and artwork, laminated and velcroed. We are shown different ways to make them and where to buy the constituent parts or even ready made schedules.
I love making visuals with my son, we discuss them in context. We talk about what we want to achieve and why. We carefully select images, cut them to size, watch the laminator work its magic, apply velcro… and then they usually get abandoned. I’ve learned that, for us, the thinking and talking is the useful part of the process!
Without a doubt, having some routine has helped my son, but I’ve also learned that routines can restrict and limit. What is often missed is how to build flexibility and surprise into these rigid structures. Life cannot be entirely predictable, so finding ways to help our children cope with the unexpected is vital. I get very anxious when my own routines and plans are disrupted so I’m very conscious of the effect on my son.
In our family we have found that having set routines can be beneficial at specific points of the day. They are useful when we are working to someone else’s schedule, like getting ready for work and school in the mornings. We have also found that having a bedtime ritual, which has changed and adapted as my son has got older, makes for an easier and happier end to the day. These are not imposed, they are discussed, trialled and talked about. Flexibility is key. I will be discussing the importance of collaboration and negotiation in my next post.
This day to day scaffolding provides a safe structure for my son who seems more able to cope with surprise and disaster within it. Finding the right balance is important. I have found that as my son has got older and developed his own strategies (and simply matured and developed in a myriad of ways) he is able to abandon some of the routines and rituals. I can tell when his anxiety is rising because he relies on them more and is less flexible, more explosive and more aggressive. I need to be able to respond to these needs, providing routine when he needs it and gently encouraging diversion when possible.
As parents I think we have to pick our moments and create opportunities for our children to encounter inconsistency and spontaneity. Using special interests is often effective, but should be used carefully. Too much and we risk our children losing their interests, but a little diversion can present new areas to explore. We need to respect our child’s right to say or indicate ‘no’ they don’t want to do that. Very few things are compulsory so giving choice and an escape route is important.
I cannot stress enough how anxiety-ridden change and changes can be, and the more anxious we are the less flexible and more controlling we become. The security and predictability of routine can make it easier for us and our children to try new things and cope better with the unexpected.
If we can make the world more familiar, more predictable and more comfortable it becomes more accessible for our children and their anxiety reduces. When our children are less anxious they are more able to both cope with challenge and use the skills they’ve developed. If our children are prone to explosive and violent behaviours when their anxiety is high we have to work on reducing the anxiety first. There is absolutely no point working on learning and skills development when a child is in a state of distress.
Note for schools: our children work really hard to get through a school day. Don’t underestimate how much effort it takes just to be in school. Keeping to the timetable, preparing for changes to the timetable and allowing some choice can make a difference. Just because a child seems ‘fine’ with change, doesn’t mean they are. Many of our children are master maskers. Do listen to the parents if they spot a pattern which indicates home problems are rooted in school day problems. One of the most effective supports for my son was a copy of each week’s timetable. It helped me prepare him for each day and helped me spot problems by identifying patterns in his behaviour.
Sensing the world
Our senses are central to the way we experience the world around us. Autistic people often experience sensory input differently to neurotypical people, but all people respond to sensory input and use sensory strategies in their daily lives. All of us, autistic or not, see, hear, touch, smell and feel. The position of our bodies and how we move is the result of sensory processes. We both avoid sensory input and seek it. I am not here to explain the science of sensory processing, as that’s beyond my expertise, but I do want to explain a little about how it affects us and what might help on a practical level.
For many autistic children sensory problems cause immense anxiety and can be directly linked to violent and aggressive behaviours. Our senses keep us alert to danger, triggering our instincts when we feel under threat. If those sensory perceptions are a bit wonky it follows that our reactions might be unusual too.
My son experiences a seemingly conflicted mix of hyper- and hypo- sensitivities. A simple example is his touch response. He is hypo-sensitive to heavy touch, he loves to be squeezed and squashed and physically restricted. He will ask for more and more and ‘please more’, as if he wants to be compressed like a car in a crusher, his body simultaneously folding in submission and resisting pressure. This is deeply calming and pleasurable for him. Since he was a baby he has been pacified by firm patting and vigorous rubbing of his head and back. If you bump heads with him he won’t even notice.
However, his hyper- sensitivity to light touch, a fleeting brush of his skin or clothing as you walk past, a gentle stroke of his arm to soothe him, means he feels it like a full-on assault. And when we feel under attack, what do we do? We fight, we take flight or we freeze. We are barely in control of this instinctive stress response, even less so when we are already in a heightened state of anxiety. My son’s instinct is almost always the fight one. To an outsider it looks like a massive over-reaction, but in response to what he feels and perceives, it is quite proportionate.
This fight response to uncomfortable sensory input is called ‘sensory or tactile defensiveness’ and it is very real. It does not just apply to touch. Often, we can cope better with perceived sensory assault when we are calmer, or have some control. The noise of another person eating can make me mildly irritated on a good day or holding back an urge to rage in fury on a bad day. I have learned to flee rather than fight, but the instinct is there. I am fortunate that I can articulate this. Many of our children cannot.
Having to constantly process uncomfortable sensory input and meet our sensory needs is exhausting and can leave us with limited capacity for rational thought or learning. I could list all the various ways people manage their sensory problems, but there are whole books about this. I urge you, if you have an autistic child who is presenting with violent and explosive behaviour, to look at sensory processing difficulties. Small changes can make a huge difference.
Atypical sensory processing can cause significant problems, but it can also lead to creativity and new ways of experiencing the world. Autistic artists like Jon Adams create beauty from their synaesthesia, providing new ways of experiencing the world. Our autistic children often offer interesting and original insights into the world around us.
Note for schools: school classrooms and corridors are often a sensory nightmare. Poor acoustics, residual food and cleaning smells, fluorescent lighting, and visual clutter everywhere, all combine to add to our children’s stress load. The noise and chaos of a primary school playground or dining hall can be hellish. It makes our children feel under attack. If you can provide calm spaces for our children to retreat and recharge you might help reduce stress and overload, reducing violent and explosive behaviours.
Allowing an autistic child physical space and room to fidget and move can help them maintain their own balance. Try to understand that children fidgeting or becoming entranced by the view from the window sometimes learn better than when forced to sit still and face forward. Our brains can get so cluttered that to concentrate we sometimes need to hyperfocus on something unrelated. My son’s teachers have finally learned that when he’s looking out of the window, fiddling with his ruler, possibly even humming, that he hears every word you say. Make him look at you while you speak, and he will be so focused on sitting right, looking the right way, and staying still, that he won’t hear a word you say.
In my next post I will discuss some practical ways to support emotional regulation and develop problem solving skills in our children as a way to reduce violent behaviours and meltdowns.