How much of a disability is autism then?
Greetings from the M1! Currently on my way back from Leicester after a lovely weekend with a dear friend of mine. The coach has wifi and I had the idea for a blog post (and I also had it on my to do list for the week so quite useful actually!). I saw an interesting post on Facebook a couple of days ago which I found to be very thought provoking. I have just tried to check where it is on my previous likes to refresh my memory but no luck as I can't seem to remember when I actually saw this. It was interesting food for thought and certainly enquired the title. I'll reflect on what I read and reflect on my perspective of how much of a disability autism is.
This post I saw was concerning autism as a disability and the language we use to describe this. There has been for a while many in the autism community who speak up against pathological language but this post was almost reminding us of the depth and breadth of the autistic spectrum and how it is so very difficult to speak using such blanket terms in regards to being autistic. Many individuals who speak up may, in binary terms, be classed as 'high functioning' or not seen to be that disabled, or may not even consider themselves as disabled in some cases. This what could be seen as 'bias' in representation if there is not what could be perceived as 'equal representation of all cases'.
But this is autism, and autism is in no way binary. Autism is not a straight line that we or all of us are plonked on and ranked. Autism is naturally more complicated than that. For me, I find part of challenges can be due to the environment that I am in or the people who I am with. Some environments I do find 'more disabling' than others and there are times when I do feel 'disabled'. This could be due to social interaction, complex rules and social anxiety; this could be caused by sensory and information perception of that environment; this could additionally be brought on by what happened leading up to that environment and how much proverbial 'energy' (or [social] spoons) I have left and what had drained me prior. This is an intrinsically complicated scenario with many variables coming into play. This also prides the 'social model of disability' (cue TZ863 - Service Issues reading for my fellow universities colleagues - we all can do this in our sleep!). Yet how exactly can this be extrapolated further. How does this answer the questions above in general?
I think here we need to consider the word perception again and how unique it is. This post I read was talking of how we must not undermine those who do struggle immensely with the world, those who do feel disabled or who may fall under the label of 'severe'. We all have a unique perception of the world, and it is our perception that governs our experience of the world. A perception is neither right nor wrong, but a perception can be at heads with what is presented to us. Perceptions can be painful, insurmountable and unbearable. I kind of things of it like a mixing desk. We may not always be able to make sense of what we perceive and see. We might not always understand where it came from or be confused by it. We don't always know everything that will impact someone else's perception, for after all humans are not mind readers. I have to remind myself of the latter very often as I do often get frustrated that others don't just innately know what I'm on about while knowing that each other are going on about.
This leads onto an important point. Our perceptions are right and valid and the way the world is laid out can be disabling. Some will find many or all scenarios and situations disabling to them. Some may not be aware of this but will also fall into this boat.
When I talk of 'environments', it's a more general term referring to many things. This could be day to day life, adhoc scenarios, how a space is set up, the way others behave and our sensory perception as some examples. The environment is what surrounds us and how it interacts with us. Our world might have lots of objects that have no life to scientists and not respire, however this environment I speak of can jump out at us, it can hurt us and it can lift us up.
So back to the main question - how much of a disability is autism then? It is a complex interaction between our perception, our bodies, the environment and what our body does, consciously and unconsciously. For some it will be permanently disabling. For others they might find it challenging and others might find some aspects difficult but not cast it through the lens of disability. As autistic individuals, we need to not sound like we are undermining when we use the word 'difference'. In my own view, I use the word 'difference' to show how acceptable each person's perception is and to emphasise how unique we all are. Humans are not homogenous, we are heterogeneous beings and the sooner we realise that, the better.