Autistic: Part 2 - A *very* brief explanation of sensory processing and autism.

To explain why this has come about; I work with a mental health care professional in a personal capacity. I conveyed to this person that as an autistic person I often feel misunderstood by healthcare professionals. This person has asked me to teach them about what it's like being autistic. I’ve been trying to think of a way of giving the important information without writing a novel. Autism and being autistic is a complex thing, its not easy to narrow it down. So, what I have decided to do is write a short piece on one part of being autistic for each appointment. I'm sharing these short pieces on one topic relating to being autistic with you to.

As humans, we have 7 different types of sensory information being relayed to our brains from different areas in our body. The first five are well known; hearing (auditory), smell (olfactory), taste (gustatory), touch (somatosensory) and sight (visual). The other two may not be so well known; Proprioception, which is the sensation of knowing where you and your body parts are in a space, and balance, which is also referred to as ‘vestibular’ which allows us to stay upright and have spatial orientation (1). In order for us to understand where we are, who we are, and what is going on around us, the brain collects all of this information, regulates it, analyses it and coordinates an appropriate response. This process can be termed ‘sensory modulation’ (2).

When problems arise in sensory processing it can affect learning, attention, emotional regulation and social functioning (3). If sensory processing and modulation is not coordinated and if the information being passed around in the brain is not accurate, the way in which a person experiences the world around them will be different. This then can disrupt other functions coordinated by the brain, like learning.

Sensory processing difficulties experienced by a person are commonly split into two groups, hyposensitivity, when someone is under-sensitive to sensory stimulus, or hypersensitivity, when someone is over-sensitive to sensory stimulus. It is, however, possible to be both at the same time for different senses. For example, in my case, I am hypersensitive to auditory and visual stimuli, but I am hyposensitive to vestibular stimuli.

My brain can’t tell the difference between what is useful information and what is not; this is related to the autistic brain’s difficulties in sensory modulation. So, I see, smell, hear, taste, perceive everything – and I mean everything. Take a Neurotypical (NT) brain, it has a natural filter for information to sift out the rubbish and pay attention to the important. An autistic brain does not have this. Using a coffee shop scenario as an example, an NT can naturally filter out the noises which are not relevant, and their brains can focus on what is important, say, the voice of the person they’re talking to. In this same scenario an autistic brain can’t filter out the ‘background noise’ to focus on the voice of the person they’re talking to. So, they hear all of the other people conversing on other tables, the sounds of glasses and mugs clinking, the sound of cutlery, the coffee machine, the door opening and closing, music playing through speakers, the clock, the traffic outside, etc. When all of this information is being fed into your brain without being filtered out it becomes completely overwhelming and difficult to pay attention to the person talking to you. And this example is just for sound; add in smell, sight, touch, and taste, and you can start to see why public spaces are completely inaccessible to autistic people.

The majority of workplaces, public amusement places such as parks, theatres and cinemas, education centres, healthcare settings, public transport, cities and populated areas, restaurants and cafes, shops, and basically anywhere else humans mass together are overwhelming and often painful for autistic people. We also get singled out and sometimes bullied when we try and protect ourselves by wearing sunglasses everywhere, wearing ear defenders, having scarfs around our faces, stimming, etc. Workplaces won’t make adjustments often because they do not understand. Education centres are probably the best for making reasonable adjustments, but even then, many autistic children and young people can’t access education. The worst for not understanding and gas lighting autistic people when it comes to sensory processing difficulties is healthcare.

I give you one example, during my last hospital admission I kept ‘absconding’. Most ward staff assumed I was ‘attention seeking’, just being difficult and purposefully antagonising. They treated me like I was wasting their time or like I was a naughty child. I couldn’t communicate why I kept running away to staff. In hindsight it was because I was trapped in an environment that is a sensory nightmare. I was overwhelmed, in pain and distress, my brain was hijacked by sensory inputs which stopped me from being able to communicate, and there was no way for me to leave except for over the fence. This was fundamentally autism related, that if any of the staff had autism training would have realised. But instead I was treated like I was wasting everyone’s time, like I didn’t deserve any of their ‘help’ and like I had brought all the distress on myself. Imagine what damage that attitude did to me and my progress.

Autistic shutdown and meltdown are often caused by sensory overload. Shutdown is very similar to dissociation, whereby the brain cannot perform any functionalities because of a state of extreme distress. It can look like I’ve ‘switched off’ or it can look like anger and irritability when people try to talk to me. It’s not something I have control over, it happens a lot in healthcare settings which often gets misunderstood as ‘disengaging’. But it’s actually because healthcare settings are unfathomably unpleasant for me because of the sensory intensity. Meltdowns are far more obvious because I’m very clearly in distress, i.e. crying, screaming, hitting myself or hitting out, writhing, etc. These happen less often because I’m more likely to internalise distress which then manifests as ‘shutdown’. Shutdown and meltdown are more than feeling panicky, or not coping, it’s feels like the emotional and mental equivalent of catastrophic organ failure. I’m powerless, completed subsumed in by information I cannot process filling my head to bursting point.

Shutdown interrupts my ability to communicate, process emotions, all executive functioning, memory, and learning. There is no ‘therapy’ or medication to cure it or prevent it. It happens because public spaces are a sensory nightmare. The only way to avoid it is to not go into any public spaces. But that would mean I wouldn’t be able to go to work, I wouldn’t be able to get food, I wouldn’t be able to travel anywhere, I wouldn’t be able to access any education centres, I wouldn’t be able to partake in some of my hobbies, I wouldn’t be able to eat out in a restaurant, I wouldn’t be able to see a doctor or access any healthcare, or the majority of things I need and want to do. I have to basically put myself through the sheer pain and distress of inaccessible sensory environments to access basic freedoms and then I pay the price in shutdown or meltdown.

This is what all autistic people have to go through all day, every day. We live in a world that is too much but have no choice but to subject ourselves to such overwhelm. NTs don’t understand and so systems and environments don’t change to accommodate us. Many of us are unemployed, can’t access education, can’t leave our homes and can’t do the thing we want and need to do. But we have worth, and skills, and things to give society, we can contribute, if only we could be a part of a society that didn’t force us to pay the price of distress and sensory overload.

(1) Hywel Dda Health Board (2015) Parent/carer information: Sensory Processing Difficulties [Leaflet]

(2) Nspt4kids.com (2014) What is sensory modulation? Available at: http://nspt4kids.com/healthtopics-and-conditions-database/sensory-modulation/ (Accessed: 13/01/2017)

(3) Chang Y-S, Owen JP, Desai SS, Hill SS, Arnett AB, et al (2014) Autism and sensory processing disorders: Shared white matter disruption in sensory pathways but divergent connectivity in social-emotional pathways. PLoS ONE 9(7): e103038. doi:10.1371/journal.pone.0103038