Autistic Sensory Processing is not disordered

When someone has many sensitive reactions to sensory inputs we often see the word disorder used to describe or explain their reactions. If someone, like me, gets headaches from bright lights or sunlight on grey days then saying I have disordered senses or that I can’t process inputs properly seems to be the go-to explanation. If, like me, someone doesn’t eat green things, or stringy foods, or mashed or moist foods without gagging then we say she has sensory processing disorder, that her brain can’t process sensory input correctly.

So let’s look at an experience that doesn’t happen on the same scale: 

My husband will eat most anything. A favourite sandwich of his is ham and banana, yes you read that correctly, ham with banana and butter and bread! 

However he can’t eat beetroot. The sight of them, the smell of them, the texture or whatever it is about them elicit an emotional response that just says no to them. Does he have Beetroot Processing Disorder then, or is it that as humans we have preferences, things that we enjoy and are pleasurable to eat and things that make us want to be sick? Things that make us feel good and things that make us feel bad?

I mean, if the go-to explanation if someone has a negative response to something is “their brain can’t process it” then, by that same definition my husband has been inflicted with Beetroot Processing Disorder. As yet, it is a little studied, but seemingly rare condition with no explanation for its cause.

As humans, we are sensitive to our surroundings, we are constantly picking up on what’s going on around us. Our senses not only process inputs but also elicit an emotional response. This emotional response seems to be categorised as “disordered” if it doesn’t match how most people feel about it. 

Our reactions are not just shaped by what we are picking up on. They depend on past experiences and how those experiences made us feel. They also depend on how we feel already. If we are tired and hungry then we may find it difficult to focus or to take in inputs around us. If we are anxious about an upcoming exam and trying to study for it then a slight interruption, even one that is someone who cares about us checking if we are getting on ok can irritate us. But on a day when we are not so anxious this enquiry is welcomed and actually makes us feel good. Our reactions also depend on how busy are minds are processing other inputs and making decisions about them but I will leave that bit for now so as not to complicate this piece. 

Our feelings and sensory reactions are not separate events. 

So, somethings can make us feel good and other things can make us feel bad.

But why do we assume that something that causes pain or discomfort is naturally bad? I mean it hurts to love and lose people, is loving people a disorder then, if it hurts us?

Beetroot Processing Disorder looks a bit silly doesn’t it? I mean, what’s wrong with his senses or his processing that means he can’t embrace the beetroot like my neighbour can, or his friends can or every beetroot loving consumer can? Maybe, just maybe his emotional response to eating one is even so strong that it over rides his sense of hunger and would never turn to beetroot on the days when ham and bananas are not on offer.

Do people who don’t like Channel No. 5 have a deficit in processing it or do they have an emotional response to it that is negative? 

Do people who don’t like the smell of burning food have a difficulty processing it or does that smell elicit a negative emotional response?

Most of us will not enjoy the smell of burning hair, should we therefore ship ourselves to therapy in order to process it correctly? Or do we realise that as humans we can have negative responses to stimuli and because we all experience the world differently that our responses will be varied? 

Simply put, some inputs elicit positive responses and some inputs elicit negative responses. And naturally those responses can change over time, over experience and can depend on how many negative and positive responses we have already had that day, in that month or in our lifetime. 

One thing I have noticed, just like other humans I can handle the ones that elicit a negative emotional response when I feel good. When I’m tired or stressed then they impact me more. But show me a human who doesn’t say the same thing? Your baby crying when you’re well rested is a different emotional experience than it is when you’re exhausted, hungry and over-stretched. 

Very often parents of Autistic kids say things like “my five year old Autistic son has started kicking his wall” or “my two year old, just diagnosed child is tearing up the house” or “ my seven year old Autistic daughter lost it in school and turned all the chairs upside down” and very often I will see other people explain that what their kids are doing in these situations is “sensory”. 

Then they’ll advise things like buying play dough or a swing to give them that “sensory” input they must be craving because someone else said that Autistics are constantly running around looking for sensory input so everything an Autistic does has become this magical concept of “sensory”.

All humans are sensory beings.

But let’s look at this kid like we do other little humans and let’s change “sensory” to “emotional”, now we can see more and understand more. Why do humans kick? Why do humans destroy things?” What makes someone feel so much negative emotion that it is expressed outwardly as destruction? If this is the emotional expression on the outside then wow, how is that kid feeling on the inside?

Imagine you have a tank, it’s your sensory-emotional tank that can fill from 1 to 10. Imagine you are sensitive to light so you start at 3 whereas someone less sensitive starts at 1. Imagine you are also sensitive to colours, so you move up to 4. Then imagine you are sensitive to other people’s feelings, jump up to 5. Now, think about how you feel when you’re treated differently, or when people laugh at you or when someone scolds you for being cheeky because you took something literally. What number are you at now? 

Let’s do it the other way around now. Imagine you start your day at 6 because no one bothers to communicate with you in your language, you are constantly failing and not reaching expectations set for you by therapists and teachers. Imagine your teacher talks to you very slowly and you’re the only one in the class who has a teaching assistant. Imagine you are always confused because you stopped asking people to rephrase things because they told you that you were being annoying or wasting their time. Imagine what it’s like to feel unaccepted, weird and “other”. Imagine what it feels like to be mocked at work or never given a promotion. Imagine what it’s like having people talk down to you or to constantly pick up on those glances made between others who think you cannot see them. Imagine what it’s like to speak directly but constantly be told your natural way of using language is abrupt. Imagine what it’s like to never be actively involved in decisions made about you and living your life as a passive participant. 

Now what number are you at and where it the space for your “sensory” inputs? How will a fluorescent light make you feel right now? 

What happens when you reach 10 and there is no more room? Then your emotions overspill and you meltdown or shutdown in a desperate attempt to create room in that tank. 

So, our senses and our emotions are not separate things. Ever have that moment where a certain scent brought you right back to a moment and you felt as happy in that moment as you did when you experienced it for the first time? Ever feel disgusted by the sight of something? Or the smell of something? Ever just look around you but then something in particular catches your attention because it’s pretty and it makes you feel good to glance at it a bit longer? 

As humans, we all have different preferences and different experiences which can shape those preferences. Our sensory environment makes us feel different feelings whether it’s relaxed or stressed or on high alert. If a certain environment made you feel stressed would you think you had a disorder in processing it or would you investigate to see what it is exactly in your environment that is causing the distress? Would you send yourself to therapy to learn to cope with that stressful environment or would you get out of that environment? 

What if you were not in a position to control your environment or to move out of it? How would that effect your sensory-emotional tank? 

There is an entire industry based on humans benefiting from changes in our environment. We call it the Travel Industry and yet when it comes to Autistic people like me, who have heightened senses or who are more sensitive when compared to those humans who are less sensitive, we are told we have sensory processing issues or difficulties and the solution is often not to change our environment but to send us of to therapy to fix the processing problem.

There is another industry that focuses on creating good environments, we call it Design. Wouldn’t it be wonderful if design took everyone’s needs into account? 

Our environment is not just the physical world, it is also the social world. Other people are a big part of our human environment. Autistics are highly sensitive and emotional people. We are constantly picking up on social judgement, on ridicule and on how the world responds to us. The world tells Autistic people that we are wrong, that we move wrong, we think wrong, we feel wrong and we communicate wrong. The world says we can’t empathise, or understand others or play right or share things or take turns. There are numerous therapies all based on these ideas. All trying desperately to make us different to who we actually are. Remember that scale? Imagine where you would start each day if these were the “inputs” you receive all the time.

Speaking of turn taking, I feel that non-autistics have taken enough turns in this conversation about us and it’s only socially appropriate for us to now stand proud and tall and correct all these nonsense ideas made up about us over ten decades and to undo much damage. 

What would the world be like for us if Autistics were not seen as disordered? If everything we did wasn’t seen as wrong? What if people didn’t ridicule us and laugh at us and treat us as other? Then how would our processing be if we didn’t have to process all that negative emotion towards us? 

We do not know. We do not know because we have yet to experience it. 

I accept my husband’s Beetroot Processing Disorder. I do not try to hide beetroot in his soup, or cover it in chocolate or in yogurt. I have never tried to dress it in sunglasses and a wig in the hope I can fool him into eating something that offends his senses and hurts him to think about. I have never sent him off to Beetroot Boot Camp where they try to trick him into eating something he does not like, offering him small bits at a time, inviting him to first kiss the beetroot (yes this happens in food therapy) and lick it with his eyes closed. 

I have not designed a special plate with all his favourite foods and then ruined it with a slice of beetroot on the side. I have not offered him a week away in Vegas if he successfully eats something that hurts him. I haven’t even offered him a dessert on the condition that he eats that slice without complaining. I have not tried to cajole him into visiting a Beetroot farm so that he can understand that beetroot grow just like the other foods he eats. I haven’t drawn him any picture books either about how Johnny feels happy when he eats a beetroot sandwich or written him a story explaining that Jenny is a world champion people pleaser , I mean Beetroot eater, because she cleans her plate when she is asked. 

I haven’t done any of these things, and luckily he hasn’t tried to train me to eat anything green or stringy or take my sunglasses off on grey days.

Acceptance is a wonderful thing.

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