You only ever know half of what you see.
Part of my inspiration for starting this blog was seeing posts by other autistic people who quite eloquently describe the experience. I try not to repeat what they have written because they do an excellent job of explaining through all the nonsense that is flying around about autism.
One particular post caught my attention for articulating the difficulties we endure. “I’m at war with myself – Parts of my Autism people can’t see” by Anonymously Autistic, describes issues with anxiety, sensory overload and issues with social skills that are not apparent from an outside perspective. This demonstrates the importance of autistic people taking back control of the narrative from those who, quite frankly, do not have a clue.
As I was reading this post, I was reminded of the day I was diagnosed. I remember sitting in the meeting room opposite the psychiatrist and psychologist, answering questions that I had never been asked or thought to ask myself. The answers I provided astounded me because I had not really thought about it before. I was not even aware of these problems until I was in my mid-twenties and even with four years to think about it; I still struggled to understand my entire experience.
Reading about the experience of other autistic people allowed me to understand that I am not as alone as I thought. But it also made me question what else did I not yet know about my experience with autism? How do I even know when I do know about autism?
It has been almost a year since I started linguistically using the term autistic to describe my experiences. Prior to 2012, I had no awareness of the condition at all despite always falling into the category. How did I know about autism without prior knowledge? My experience.
The two most comprehensive diaries I completed detailed my socio-emotional difficulties without any reference or awareness of autism. Black and Red (2008-9) was an outlet for the struggles I had when first became unemployed. This was when I thought bipolar disorder was my problem because I was not depressed all the time. When the mental health team who assessed me informed me that I was not mentally ill, they did not offer any alternative explanations for my misery.
It was always about more than simply being a situational problem because I could trace the problems back to childhood. I was already enrolled at university at that time, therefore, still had something positive to look forward to – I was painfully aware of this. I could not verbalise that my problems were social; I thought everyone perceived their environment like I did, and I did not even know that part of what I experienced were panic attacks – I never saw anyone have one. I thought I was going mad! Apparently, the experts disagreed.
Midnight (2010) goes into a lot more detail relating to specific social encounters during the time of writing. I became obsessed with documenting my daily life and trying to understand the world I lived in. It took on a wistful aspect that mixed Black and Red’s depression with a new hope that was born from my experiences at university. My writings still considered the nature of reality but lost the spiritual and religious references that often characterised my earlier writings.
The painful truth is that the Dark Side of Autism is the reason the condition is considered a disability as opposed to a social category such as gender or race. Behavioural issues are common amongst autistic children and can result in devastating consequences. There is a very real risk of harm and like most aspects of the condition, this risk can be well hidden, easily triggered and difficult to manage. The Dark Side is the reason people search for a cure.
It can never be emphasised enough that autistic people suffer regardless of how well they appear to be managing. The biggest misconception about autism is that if you are not having an immediate and obvious meltdown, people assume you do not have them. I have lost count how many times people have doubted my autism because they recall that I was good in school. My mother can attest – I saved it all up for home time.
When I was a child, I threw legendary tantrums and once I threw such a violent one that I pulled my own wrist out of its socket. When social services investigated, they were only interested in whether my mother was abusing me or not. They did not think to question why the quiet little girl is the violent one. Helping a white single parent of a mixed-race child was not a priority in the late 1980’s.
I grew up in a city where various areas had different gangs and sometimes those groups did not get along. The people I socialised with were quite laid back but I was no stranger to fights. My unspoken rule was that I would never provoke (expect that one time…), but I would stand my ground fearlessly if someone provoked me. I got a lot wrong when I was growing up, but I learned to navigate the social labyrinth eventually. Kinda.
It amuses me when people think that I am so meek when I know that I am only calm because I have almost perfected self-control. I must admit, I get quite confused myself when my body is telling me that I am anxious; yet I am silently roaring internally with courage and determination despite having a calm, pleasant expression.
There is a part of me that just accepts that I am a walking contradiction: appearing normal while being autistically confused 99.9% of the time. I have come to value the quirks that make me who I am. When I was writing Mixed Face; An Answer to the Question: Am I Autistic? I began to pull in all the threads that connected me to the world of autism and started to understand the depth and complexity of my experience; one that is shared with millions across the globe.
My experience is not validated through recourse to normality but by the similarities that I share with others who are suffering in similar ways to me. I may not consider myself an anxious person but my body certainly disagrees. I find solace in melancholy because I have emerged stronger and have achieved more than I could imagine – but I am not a representative of everyone.
For whom is autism worse for? Those who suffer from it or those who support those who suffer? Parents of autistic children are usually the ones who advocate for a cure because they want their child to not suffer. That is understandable, however, we need to consider that it could perhaps be the world that needs to change not the autistic person.
The narrative of autism needs to balance the dark side with the light and give voice to the happiness and joy we can bring. We need society to understand the darkness so they can prepare for us when we choose to step out of the shadows. We need them to understand that they need to leave us in the darkness when we need rest and comprehend that it is a cycle that is crucial for our well being.
I have never feared the darkness because without it we would never see the stars. I am still learning to accept that it is okay when I feel ludicrously happy because I have the latest Rick Riordan book, or that I still cry when watching Guardians of the Galaxy for the hundredth time.
It is difficult to see – believe me I know – that autism really is social category not just a disability. We ought to be able to choose whether we want to be social or not but we cannot, just like we cannot choose whether we are born male or female. The difference is what we do with that choice. Some people do not want to be the gender assigned at birth thus take control of their destiny.
Would I choose to be autistic? Well, that answer depends on the day I am having – and that is what concerns me about the search for a cure.
Could we change our minds about it later if we wanted to?