Processing everyday sensory information can be difficult for autistic people. Any of their senses may be over- or under-sensitive, or both, at different times. 

These sensory differences can affect how they feel and act, and can have a profound effect on a person’s life. National Autistic Society.

In a recent interview I did with a long term client, he said to me “I used to be worried about blacking out in the shower. Showering felt very dangerous for me”.

Now this was hugely significant. It was a big statement. I had to stop him talking to go back to what he was saying – which was no small thing as previously it had been so challenging for him to speak – but I really needed to understand why he found showering dangerous.

This client had spent years in a highly immobilsed body where speaking, moving, initiating executive functions required enormous effort. Every little thing, even thinking and processing information took time. I knew this, but what I had never understood was that his sensory overload was so high, that the sensation of being in the shower – with the water spraying, the sound, the heat, the confined space – whatever it was – all impacted his already overloaded system to a point where he felt he would black out.

I was stunned. I thought of all the behaviour reports I had read and the protocol we always have for people on the autism spectrum where we teach them steps so that they can ‘self-care’. As professionals we decide that these people are avoiding certain behaviours; that they have PDA (Pathological Demand Avoidance, my great bugbear); that they have no interest in showering and taking care of themselves; that we need to teach these behaviours; skill them up – all the while potentially missing the point that they may be in a valid and extreme state of anxiety over their personal safety.

Think about it. If you couldn’t control your body blacking out in the shower, would you want to take a shower? The answer is no, you would avoid it.

What always irks me about behavioural profiles is the lack of appreciation of the challenges of the sensory system. The ‘pathology’ is seen as a psychological deficit, one that must be managed and directed. How much literal, physical pain do we put people through by ‘knowing’ what they need? How much time is wasted by not accepting there must be a valid reason for the person’s behaviour – even if we can’t know it, or they can’t speak it?

The point is that these people do know precisely what is going on and often, for whatever reason, they can’t make their body operate the way they want it to. They generally know exactly HOW to take a shower and self-care – they just can’t. It’s not pathological in a psychological sense – in fact it’s not a pathology at all if you assume that pathology means disease! It is more like an involuntary inertia of the body, an imbalance of the autonomic nervous system that plays havoc with your body’s operational software and ability to effectively engage with the world.

This young chap, less than a year into the program, started to take showers; he has initiated a self-care routine. He has begun to cut his hair and to be most considered about his appearance. He is doing so because he can. He is doing so because his body is not shutting down so much and he is getting better sleep. Now that he does not have to fight his body and mind at every turn, he has choice and control over his day.

He has choice and control over his day because he has worked very hard in the last three years with me and his dad, to invite his body to move out of its fixed state. We have progressed with very gentle physical exercises and understanding, to motivate the internal system to move out of a hypo-alert state. We have at no time engaged in a behavioural protocol or investigated his psychology. Over time, his body has begun to learn how to stay in a more regulated place and this has allowed his whole operating system to re-engage. He is talking with ease, he is smiling with ease, he is cracking jokes with his dad.

This young man, now, can share what he knows. He can share his wisdom and his trials of living in a highly shut-down state that even his parents, who are devoted to him, could not know. They didn’t know he was scared of blacking out in the shower, because he couldn’t tell them. He can tell them now!

We used to think that the brain was fixed and not capable of change, but it’s not true. The brain is capable of changing – at any age – and when we work with the body as well as the mind, we have an even greater capacity to make positive changes.

People on the autism spectrum, whether they can speak; whether they are hypo or hyper reactive; whether they are five, fifteen or fifty are all intelligent and all have highly sophisticated nervous systems that are capable of learning.

When we work directly with the nervous system and avoid overly complicated social and cognitive tactics; when we work with transparency, clarity and have an inclusive and empowered approach -we can make magic happen. However, it’s not magic, it’s the brilliance of a brain/body system that wants to be free and when it is shown how, with kindness and grace, it has an amazing, adaptive capacity to grow and develop and let people be more of who they want to be.

It’s not much use teaching people stuck in an immobilised state to cognitively try and work out what’s happening in their body – because they can’t! They can’t because the body and nervous system are not in the right physical state. We literally can’t feel things or ‘know’ things about our internal state when we are in shut-down. If we’ve always been in shut-down, we’ve probably never learnt to do this.

When we teach the body how to be in a more relaxed and composed state, this function can come online. Body cognition is about learning how to listen to your body, how to respond to it with kindness and to build a relationship with it, so you can feel you have mastery over your system and get to live the life you want to live.

Traditional therapies like Cognitive Behaviour Therapy (CBT) focus on changing unhelpful thoughts and behaviours that contribute to, and feed, anxiety. However, these require people to use their brain and will to overcome a highly limbic – body dominant – state and often they fail. This inability to control the mind can sometimes cause further anxiety and feelings of inadequacy.

It turns out that the body informs the mind much more than we have previously thought and this changes our focus on working with anxiety. Recent advances in neuroscience indicate just how beholden we are to our body for our mental wellbeing and just how much the body informs and influences the mind.

While the brain is very much a part of the problem in anxiety – the amygdalae, the flight/fight centre in the brain, when active, literally dominate and inhibit access to the brain’s prefrontal cortex (our executive functioning, strategic planning, will to live, higher cognition and language) – what we do not really appreciate, is just how responsive the brain is to information being sent from the body.

Our body goes into flight/fight long before we consciously know about it. At least 80% of our sensory information is first assessed in the gut. Signals of danger are sent from the gut, via the vagus nerve and spinal cord, to the brain and it is only then that the amygdala go into full flight. Once activated they send repeat memories of danger so that we keep vigilant to stay safe. Unless something changes, we can get stuck in this heightened state.

The body and mind work as a whole and the body very much informs the mind. For example: the amygdalae are part of the body’s limbic system and are informed by the gut and nervous system. The vestibular system (balance, posture, sense of self) and social engagement system (cranial nerves -eyes, ears, face, voice, swallowing, connection to heart, lungs and digestion) are deeply connected to the prefrontal cortex; and all these things are heightened or limited depending on the detection of safety or danger.

When the body is in a calm state, we have good access to eyes, ears, face, voice, heart, feelings, we can move well, think and communicate easily. When we are in a flight/fight state our cortisol and heart rate go up, our digestion turns off ; our ears attune to danger ; our eyes shift focus, they go rigid; the optic nerve – contrast and brightness gets depressed; and when we are immobilized, the body literally takes over and switches us off from access to our social, emotional and physical functions.

In these heightened, non-restorative states our digestive system is seized and we cannot properly absorb vitamin B12, make serotonin, dopamine, myelin, and our immune system is compromised – because all these things are made in the gut and our gut goes offline in an anxiety state. The longer we are in an anxiety state the less resilient we become because we need all these physical things to keep us mentally strong. The longer this lasts the less resilient we become and the more prone we are to anxiety.

At this time breathing techniques and mindfulness are really difficult for a lot of people. Showing anxious people how to work directly to calm the body can sometimes be much more efficient. When you learn how to be in a calm state and how your eyes, ears, face, voice and thinking can come back ‘on line’, you feel like yourself again. When you consistently teach your body to be in this state, you improve your vagal tone – your ability to deal with stress.

Working directly with the body with gentle body focused exercises can be much faster than trying to work first with the mind. The more you can train the physical nervous system know how to be calm and respond well to stress, the more you can begin to strengthen and keep yourself in a restorative state. You begin an upward spiral of health, vitality and strength. And you are much less susceptible to anxiety and much less likely to rely on medication for your wellbeing.