This is going to feature as a sort of ‘taking stock’ of where things are now, for me. I have recently finished a solitary retreat where this kept coming up for me.
Some people might wonder why I feel the need to air my dirty laundry on the internet. I suppose there are two reasons, which are highly inter-related. Firstly, it doesn’t feel like dirty laundry – it just is what it is. Secondly, I’m on this quest to be as honest, authentic and as real as I possibly can. I want to reach as many people who are involved in my life with the stage that I’m at, as possible. It might put them in better stead to understand who I am, and where I’ve come from. It also saves me having to repeat myself. There are parts of this story that I have revealed before, to individuals and on social media. I feel as if, over the past few months I’m becoming more integrated – in the sense where these things are coming up, I’m trying to compartmentalise them, so I can begin to accept them and/or let them go.
Part of the reason I’ve been interested in talking about this was following a difficult conversation with a family member, one that I’ve been wanting to have for a long time regarding the various diagnoses that I’ve received in my relatively short life. Labels are just labels and really, they don’t mean very much unless you believe that parts of the human brain can be abnormal. Can they? I don’t know.
Labels become problematic, when with them they carry a sense of shame, a lack of understanding and you become stuck in a way of thinking and being, because of a label. Sometimes I worry that I’m becoming far too obsessed with autism and all its implications, but I feel like I have years of integrating to do that I wasn’t *allowed* to do in my formative years, before I can let this aspect of my identity go. Who am I? Which parts are me? Which parts are anxiety? Which parts are autism? Which parts benefit me? Does it all even matter? It’s part of a death of the self.
NB – I’m aware that I say the statement about labels with a certain amount of privilege. I do believe that labels are necessary and important insofar as they provide people with identity that they may need at that time and therefore access to a community and they provide people (sometimes) with relevant services and products to allow them to live a better life. I am also privileged in the sense that I do not suffer from a physical or intellectual disability, although I was developmentally delayed, it wasn’t to a huge degree. I did hit all of the important, and socially acceptable milestones, just a bit later. I think, in the autistic community, this is called “Aspie privilege” – I have the ability to write about my experience as an autistic person, and maybe if you’re neurotypical, this will give you a glance into my world, and the world of many girls with autism. However, I can’t speak for all of us. Autism is a spectrum. I don’t like using functioning labels because I believe that they are misleading. I am described by ‘professionals’ as being high functioning. I’m not always high functioning, it dismisses my low days, high anxiety, overstimulation, when I’m unable to communicate, and other experiences I talk about later in this entry. Similarly, I feel it’s really horrible to label some autistics as “low functioning” – perhaps because they are non-verbal, violent (although scary, not often meant), unable to use the bathroom etc. This does not make these people any less intelligent or capable.
My “disability” does impact my life in various ways and for a long time I was hugely ashamed because my diagnosis was denied to me, it was constantly invalidated because I could “make eye contact” and was “very intelligent.” So, really it didn’t matter because it didn’t impact the academic aspects of my schooling and it was largely unseen. That is also my privilege. I can function, relatively well in society, at least on the outside. Most of the time. The issue is some people seem to think that it is all the time and that I don’t ever require any support. When I’ve asked for support, I’ve been told I don’t need it and will eventually figure it out on my own or told I’m so lucky to be on the other side of the spectrum. Or I’ve been given well-meaning but useless support – access to an aide at University (she was quite rude actually) and access to a laptop when I already had one.
Around two years ago now, I was in discussion with my mental health nurse about autism and the implications. I have been so very lucky with the access to psychiatric services that I’ve been able to maintain. I’ve gone from having a diagnosis of unipolar depression, bipolar type two and suspected borderline personality disorder. I’ve been on medication and/or in therapy for most of my adult life. I was being treated for all of these things, but treatment wasn’t working, or was working for a short period of time. I had been misdiagnosed, more than once. Turns out I don’t have any of those things. I’m just autistic. It has its own comorbidities which can present like aspects of depression and believe it or not, borderline, but it’s not those things. Many professionals can’t diagnose autism in girls because all the literature was written about autistic boys. There are huge differences and girls are absolute experts in masking autism. You can research that if you’re interested, I’ll just be talking about my own experience.
I’m going to be looking at different aspects of autism and how they pertain to me. I think I’ll publish in parts so that it doesn’t become disjointed and/or too boring.
In the least manipulative way possible, I hope you care enough about me to want to be a part of my journey. It feels important to me.
Lots of love.