**Disclaimer – I am not an autism expert. I am only talking from my experience of autism, and also from what I have learned from conversations with other autistic people close to me. I am not attempting to make a general definition of autism; I think it’s really important that we listen to every autistic person’s experiences and thoughts.
Also, this is just as I understand things currently. As I learn and experience more, my understanding of autism may change.**
I have been thinking about how to word this for a while, and generally being really perfectionist about it. But I feel that in order to talk about my own autism, I really need to first explain what I understand as being meant by the word “autism” – through the lens of my own experience – so here goes nothing…!
So when I worked with autistic children, and also when I was diagnosed, I learnt about the “triad of impairments” that categorise somebody as being autistic. These are impairments in: social imagination, social communication, and social interaction.
The more I learn about my own experience, and the experiences of others, the more I think this is woefully inaccurate and lacking as a description. I have come to believe that autism has been defined by looking at a narrow field of behaviours that arise – particularly in some young boys – in response to an internal experience. And then those behaviours have been taken to form the basis for the understanding of what we now call autism.
I happen to believe that those classically recognised behaviours are only one way of pointing us towards what autism actually is. I believe, in line with this #actuallyautistic definition of autism, that what is meant by autism is a particular internal experience, which relates to the way we interpret and understand the world.
So I think from my own experience, that I see a lot of detail in the world, not just with my vision but also with my other senses. My senses can be very sensitive. I am always taking in and processing a lot of information. And this same way of being allows me to learn a lot very quickly, to see things in new ways, and to be creative – because I am taking in a great deal from my environment.
I was really pleased and encouraged to see this notion of autism as being about how a person processes information being put across in the recent programme “Am I Autistic?” If you’ve not seen the show, I really recommend it – I think in that particular segment they explain what I am trying to get across here really well.
This way of experiencing the world can lead to social differences, routinised behaviours, controlling behaviour and all the other things typically associated with autism. This makes total sense to me, and I know I have experienced all these things, as a result of my intense sensory experience of the world and attempts to process that.
What I have also found, through realising this about myself, is that I don’t believe I have a fundamental social difference. I have felt like I do for most of my life, but I’ve come to believe that that came about as a result of my interpretation of the world and my behaviours in response to that. And also as a result of being misunderstood by a world which does not accept or understand autistic behaviours.
My earliest, most powerful memories are sensory. Of things feeling chaotic. Of being terrified of loud noises. Of being terrified of a lot of foods. Of not being listened to in those experiences and then being deemed to be problematic for fighting for my right not to be traumatised. These are my earliest memories. Feelings of social difference didn’t arise until later. It is hard to learn functional social skills when you are having to fight all the time to be heard. Ditto, it is hard to learn empathy when you are not seeing it. And I feel that, in being labelled as having this triad of deficits, I am in a sense being re-traumatised in still not having my understanding of the world recognised.
I’m pretty outgoing. When I first told one of my best friends from university that I am autistic, shortly after realising, she said “but you’re so extroverted”. Yes, I am pretty extrovert, I don’t cope well with an isolated life, I love getting to know people and having strong relationships and a sense of community is really very important to me. (What I mean by “extrovert” is gaining energy through being around people as opposed to through solitude.) I have suffered a lot through my life through not having that and at the moment I do have that, more than ever before, and I realise it is fundamental to my human needs and how much not having it has been hurting me.
Again, I am only talking about my own particular experience, and I am not saying “autistic people are extrovert”. What I am saying is that we can be extrovert, and we can, I believe, have good social skills… Because I don’t believe that my autism is fundamentally about my social skills. I don’t think my ability to have social skills is either here or there in regards to the way my brain is wired.
In another segment, the show “Am I Autistic?” portrays four women talking about their autism, the focus was on how stressful and unnatural socialising feels for them and how it will lead to meltdowns. That’s not my experience, I love socialising, and find it comes very naturally to me at this point in my life – although in noisy, chaotic environments like bars or playgroups I find it harder to feel relaxed.
I do however very much struggle with the executive function required to maintain relationships – I often forget people exist for large chunks of time, unless I naturally see them all the time. My executive functioning issues cause me problems with my day to day running of life and a home – for example, I find cooking really difficult; breaking down the steps required to make a dish, finding all the required utensils, cutting the vegetables up, and so on. Tasks like that with lots of tiny steps can be very stressful for me. And that stress can build up to eventually cause a meltdown if I don’t keep it in check. I do a lot of frozen food which is a Godsend for us. (I also find cleaning really hard for the same reason – too many tiny steps to break down. And those many tiny fiddly steps of cleaning and cooking are hard for my dyspraxic hands, too.)
These experiences aren’t “autism”, and I’m not speaking for “autism”. This is just me, and these are my particular challenges related to being on the spectrum. Other autistic people will likely have different challenges and might find cooking and/or cleaning very enjoyable.
Although I don’t think I am fundamentally socially disabled, I have been disabled in my ability to learn social skills by the way society-as-we-experience-it-in-turn-of-the-century-England is set up. I have been disabled by being assaulted constantly by noisy, cluttered, chaotic, stress-inducing experiences – experiences which are more common in our late capitalist culture than at any time before; in the form of shopping malls, large supermarkets, ginormous cities, artificial lights, colours, and fabrics, ever expanding school sizes, increased testing of young people, increasingly sedentary lifestyles, constant artificial background noise from TVs and radios, and so on and so on. We also teach young pupils in a way that imposes knowledge upon them, instead of allowing them to naturally uncover it – the latter being the way I naturally learn.
We often count large and stressful life changes as being part of a very “normal” childhood experience these days – moves to new areas, with no extended support to the nuclear family; moves between schools; break-up of the nuclear family. None of this is meant as a criticism to my fellow parents, who are experiencing very high pressures and stress without any additional from me! But at the same time, it is a fact that I experienced all of these three things close together in childhood and my ability to function greatly decreased immediately afterwards. And nothing in my childhood was counted as having been abnormally stressful or traumatic at the time – but actually, as a person who is filtering a lot of information all the time, it was very hard to adjust to changes in my home life, changes in my support network, the loss of my friendship group, and having to get to know a new town, all in a very short space of time. It was very stressful.
(And, from my own experience, these societal changes are the crux of why I personally believe we have this very visible rise in autistic people struggling to fit into and make sense of the world.)
So, at the heart of it, I personally believe that autism is a way of processing the world that is more sensitive and detailed than culturally we expect and typically allow for. I do not believe this way of processing is currently being respected by the lifestyles we are pressured into, and I see that wreaking havoc on increasing numbers of young people in particular, as the amount we ask of them from a stress-and-sensory point of view becomes more and more.
I’m absolutely not saying that if we simplify life, autism will go away. It won’t, because it’s about the brains we are born with, I believe. But it’s possible we would find many autistic people functioning better. I know I have functioned better as I have simplified my life – but I am able to do that because I don’t rely on my own full time work, and am not trapped into a lifestyle which is damaging and traumatic (as I was before I met Pete). I am also able to simplify my life because I don’t have to go to school five full days a week, as our education system requires of our children.
So, this post is my explanation of what I think my autism actually is. And I believe that it very much overlaps with what has been defined as the Highly Sensitive Personality – a definition which looks first and foremost at the experience of the world, rather than the behaviours which can arise as a result. (I related to the idea of HSP a long time before the idea of autism, simply because it spoke to my inner experience instead of some prescribed outer behaviours I often don’t relate to.)
I also contradictorily feel that autism doesn’t really exist. There is so much arguing about the boundaries of autism and what constitutes “proper” autism, when it’s a notion we as human beings invented, and we can put the boundaries wherever we want – where they are helpful to us.
This doesn’t mean I think that diagnosing autism is unhelpful or unnecessary – far from it!! I have found my diagnosis so liberating. I feel that the notion of autism is here to serve us, rather than the other way around, and it’s important we don’t use it to trap others and/or ourselves. We can use the idea of autism in whichever way it serves us best as a society.
**Again, I am not an autism expert, and I am not an expert on anybody’s experience except my own.**