Sensory Matters…It really does.

Sensory issues are possibly one of the most well known issues around autism and autistic people. I think in a sense it is a case of a being armed with a little information is a dangerous thing. What I mean by this is that assumptions abound about all autistic people on the basis, at times, of a person knowledge or relationship of one particular autistic person they happen to know. This is not a helpful or supportive situation for most autistic people.

The way the sensory world impacts us autistics is as wide and varied are there are autistic people in the world. Some autistic people have comorbid condition of Sensory Processing Disorder, some non-autistic people also have this issue too. Some autistic people are sensory seeking, some are sensory averse, some are neither, or a combination. For some of us it really depends on our stress levels, anxiety levels, sense of safety and so forth.

The take-away is that as with all things autistic we are all different, and that things are not static and simple.

As with all things, I can’t talk about or for all autistics. I can speak of my own experience, and in some respects what I know if my kids experiences and something of experiences autistic friends have related. I can’t speak of any kind of universality because there simply isn’t one.

I have seen autistic friends of mine have massive struggle with different sensory inputs, to the point that it is quite debilitating, similarly I have seen my daughter struggle greatly due to seeking sensory input, in particular tactile input and not being able to obtain it.

I have also seen my daughter struggle greatly with the impost of some sensory input impacting greatly on her ability to function, most notably her executive functioning capacity. Some of that input is what is often put up in almost stereotypical ways like the buzzing of florescent lighting for example.

Throughout her 23 years I have been amazed again and again at the intensity of her hearing. Keeping a secret with her in the house always provided an extra challenge. Whilst in primary school she was regularly in trouble with teachers for placing her head on the table or the floor. After investigation her reasoning for these actions were entirely logical. She was seeking the sensory input of experiencing the vibrations that went with writing with her grey lead pencil on the paper or with her head on the classroom floor she would be listening to the conversations and discussions occurring in the classroom next door.

It is as with many things a mixed bag, I also recall how she would be in pain when arriving home and the electro sonic pest control device had been turned on and we had neglected to turn it off. It took us some time to work out what it was that was the distressing sensory input, until with frustration and pain she yelled at us to turn that horrible noise off. And pointed clearly at the device, which was plugged into the wall.

It was as if instant relief had occurred and her demeanour, her anxiety, everything about the way she interacted and carried herself in that moment changed.

Sensory input matters, but it matters so differently and so widely for each autistic person and in different situations that it can be quite a journey in working out the best way forward for yourself and those you care for.

Personally, I find my sensory issues don’t have a huge impact on my daily life. There are some issues, and I do have to be aware of them and take appropriate action to ensure life is as best as it can be as I go about my day. I feel somewhat fortunate in that respect.

The only major sensory issue that is consitently difficult for me is the smell and present of mint flavour. It causes me intense discomfort and can easily bring on a case of vomiting. It is really quite uncomfortable. Coupled with this an issue I have with the process of brushing my teeth. I find that action, for some reason I am unable to work out to be a very unpleasant experience, the feel of it, the look of it, the everything of it. It is even quite uncomfortable to see others doing this simple hygiene task. When you combine these two things, finding a way for this to occur is quite a process. Finding a toothpaste for example that is not minty in flavour is a first step that seems at times almost impossible. There are alternatives but they are not common.

Apart from this generally I don’t have issues with sensory input. Mostly I seek it out, I seek out the touch and feel of things mostly and they bring me great joy and great comfort. At times extremely calming.

The issue I think I struggle most with, and it is unpredictable and hard to plan for and account for. I describe it as multiplicity of sound. I experience it as an inability to filter out extraneous sound sources and filter in the ones that I actually want to tune in to. A good example is in being in a crowded coffee shop and not being able to focus on the conversations I am involved in and becoming quite overwhelmed by the many other conversations and noises. I seem to catch snippets of sound sources all around but not enough to make sense of any of them. It is a situation that is quite difficult to manage at times and is extremely frustrating and annoying. It’s one of those things, I suppose, that I have a level of internalised ableism about, in that, I consider that I should be able to just deal with it.

But that’s the thing, I can’t just deal with it, it is the way my brain is wired and the way I experience the world. I can take precautions, I can make plans, I can have contingencies but I can’t control it, I can’t change it, I can’t stop it from happening. It just is a feature of me that I live with. No amount of anything will actually change it. All I can do is work on the best ways to react and respond when I find myself in the situation.

One thing that the world at large seem to be getting better at is considering sensory input for autistic people. Of course, in autism world things, the effort far surpasses other areas of the world. We see things like the removal of noisy hand dryers, or at least the turning off of them. We see changing the way teachers use displays in their classrooms. We see the removal of fluorescent lighting. All of these are good things and make a massive difference for those people that have issues with those things.

But, and it is a big but, well I think it is a big one, it is almost entirely focussed on making the environment better for the sensory averse autistic people and has minimal consideration for those that are sensory seeking.

The big question, I think, is in how to improve things, for all autistic people, not just the stereotypical sensory averse.

It’s not an easy question, and the only reasonable answer I can fathom, is wide and detailed consultation with the adult autistic community. It is in my view, fertile ground for some very valuable co-produced research. Research that could enable evidence based practice in establishing autistic safe place, autistic friendly environments, inclusive spaces.

It is most likely a massive undertaking, but we autistics, we do have a voice, we do have an understanding of ourselves, we can articulate through a varied and wide range of communication modes and methods our needs.

And of course the key is, that most likely an environment that is better for autistic people is quite likely to be a better environment for all people.

Sensory matters, not just sensory averse, but in all it’s guises and forms. It’s time to listen, learn and act, to make inclusive spaces inclusive of all not just those that fit a stereotype.