I was born worrying, so my mum said. I don’t really know what it is like not to have a million worries running through my head all at once. Every conceivable disaster is imagined once my brain focusses on a particular thought – There’s a downside to having a wild imagination.
But over the years I have learned a lot about anxiety and have many strategies that work for me in coping with it. I can manage it. I can recognise when it comes, what it is and fight it off. Sometimes it goes quietly, sometimes I’m exhausted after the battle. But I usually win these days. Anxiety doesn’t control me like it used to.
There’s an upside to having a wild imagination too. I can write stories and get really involved in a fantasy world in books and films. I love craft and sewing. And I can empathise when others tell me they are anxious all the time too. Anxiety’s energy can be harnessed for good.
When I work with children and young people who are autistic, they often seem anxious and many will tell me that they are…
I do a lot of 1:1 and small group work with children and teenagers and whenever I bring up the topic of emotions, anxiety is what they all feel, often all the time.
When anxiety is there all the time, your brain is connected to the stress hormones and adrenalin that it creates. It is easy to develop an ‘I’m either high or low’ persona and crave the extremes of emotion because you don’t know how to ‘be’ without it.
Tony Attwood said that people with Asperger’s don’t know what ‘calm’ is (at a conference I was attending). This is what the children I work with tell me. It makes us telling them to ‘calm down’ useless. How can they do something they don’t recognise?
This is some of the support we use and I hope by sharing them, you might find something to help your anxious autistic child.
Make sure first and foremost that it isn’t something that you are doing or others are that is causing the anxiety. This includes poor support, poor communication and not recognising their autism needs. It includes looking out for bullying and social isolation. Anxiety is not always the child’s issue but can be the result of other’s poor understanding and support. It can be hard to accept that we are talking too much, nagging, dismissing the anxiety (“Don’t worry about that” etc) or causing sensory anxiety. But it really is okay. Son’t be hard on yourself but examine what you and others do, the autistic child, young person or adult’s responses and work to reduce the demands that cause anxiety from yourself, others and the environment.
Check out their sensory sensitivities.This is the first port of call for me as sensory issues can be the source of most of an autistic person’s anxiety. Then you can help them find ways to manage the sensory overload or under-responsiveness, change the environmental factors that are contributing and introduce sensory activities. Remember it can take time for an autistic child, young person or adult to recognise their own sensory differences and process the sensory information coming into their brains. Some may be highly sensitive and anxious about going anywhere in case their senses may be assaulted, or not knowing what the sensory demands are causes anxiety. Others may take days or weeks to register the sensory demands and have a delayed reaction. And some may need extra sensory input to be able to process their environment and the demands that are put on them. It is so important to understand, support and work with the sensory needs of autistic people.
I always explain and teach the child about their sensory systems and about self-regulation. A really good book I use as a reference is “Max and Me”. It is written with primary examples but I have used the story theme to talk to secondary pupils really successfully. Mostly they will learn from experience and supportive people who understand and explain things to them. It takes a long time to learn to recognise and self-regulate. We mustn’t expect the child to be in control of their emotions, but teach them how emotions affect us and explore what they are like inside, the physical responses as well as the thoughts and feelings. “The incredible 5 point Scale” is a good visual resource for some autistic children and young people. There is something else that they should be taught too, that we can seek out trusted others to help us regulate (feel better).
I have been using Emotion Works (see my blog about this here) to get the pupils identifying and noticing that they are anxious and where or what triggers it. The visuals and components of emotions in the cogs are brilliant and I have used these with primary and secondary children, just adjust the communication accordingly. We use symbols that come with the pack, pictures and talk, depending on the child’s communication strengths. It has been good to look at other emotion words that go with anxiety so that we can explore a greater range of situations and give words to the feelings they have. But the essence is this – we often only look at the behaviour and try to figure out what the trigger was. We can work out the child is anxious, but it is really helpful to connect these elements trigger = body sensations = intensity = behaviour. From this we can look at what could make them feel better by addressing the body sensations and intensity rather than just the trigger.
Naming an emotion helps. Recognising that this feeling is anxiety, worry, frustration and what the difference is does take time. Some autistic people have a difficult time recognising emotions. We just take it at the child’s pace. We might work with just 2-3 words or (in one particular child) 20-30 words. Start to build your own word list of emotions and we find it useful to work with the 5 point scale. We also use visuals from www.do2learn.com and group emotion words into sad, happy, angry and worried columns. We make sure that at the start of the scale is one of the words – calm, okay or fine as our baseline. Because, let’s be honest, we are not usually just happy or sad. You can help by making talking about emotions part of your everyday like and have a commentary on your emotions. Simply say things like “I’m tired and it’s making me a bit grumpy. I’m going to have a rest to make me feel better.” See below for a way we have put a word list together with some of our pupils. This took a long time, we didn’t rush it and let the pupils contribute at every point. We did work about what each work meant and felt like to each person. With younger children it can take years to get to that point.
Introduce positive emotion words. Living with anxiety 24/7 often means that the person doesn’t really focus on positive emotions and times that they might be happy or content are rare. Anxiety can be in the background all the time and so to bring positive emotions to the fore needs some training. Mindfulness techniques are really useful but make sure they make sense to the person and aren’t too abstract.
Teach the science of anxiety. My pupils love this booklet from GoZen. http://www.gozen.com/understand-your-childs-anxiety-infographic/ I use it with mainstream pupils, sometimes upper KS2 but mainly in secondary. It’s there to help the children understand what worry/anxiety is and how it affects us physically and our responses.
The last part is generally the longest and hardest. Finding ways that help us manage anxiety and change it into ‘calm’ or just ‘okay’ is okay. There are lots of things to try on the GoZen site but I know this is an individual pursuit. Coming alongside the child and trying things out, maybe recording what experiences help them feel better does take time. Often autistic children will use escapism to hide away from the anxious feelings. This is often in video games, books or You Tube videos. (which can be really helpful too.) I try to help them find things that don’t just stop the anxiety being at the front of their mind for a while (because if that is your only strategy then there is a higher risk of turning to drugs, alcohol and other substances to mask the feelings later in their lives). Tony Attwood again, recommends ‘fixing the feeling’ by putting together a toolkit of strategies that work for them. I put together a booklet with the following headings and together we explore what tools the pupil has.
- Physical Activity tools (Quick release of emotional energy)
- Relaxation tools (Slow release of emotional energy)
- Social tools (People and social activities that make me feel better.)
- Thinking Tools (Thoughts, problem solving ideas, my favourite things, gratitude)
- Special Interest Tools (Being an expert in my interest)
- Sensory Tools (slowing down the messages to my brain)
These are not failsafe strategies and not all these things will help all autistic children. They are just some ideas and strategies I have developed with and for the children I support. It is important that the child ‘owns’ what they are learning and knows it’s about their own self-regulation. Anxiety is a huge part of life and for some, it is the environment that is the issue, not their self-awareness. We work with children individually and in small groups to work out how it is for them and then work with them to help them navigate and manage the anxiety they feel. It has to be with them, for them and at their pace.
Please do share your tips and ideas too. Thank you.
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