Writer and Author

Tag: Autism

It’s been a while…

A little Lego Valkyrie symbolises the difficulties of life.

It’s been a long year. Photo by Michael Stamp. All rights reserved.

It feels like so much has changed since I last posted here. The last year has been a difficult one and so far there’s no relief from that. When I last wrote a post I had just been diagnosed with autism and was waiting to see if I also had ADHD. Well that diagnosis came through so I am now getting my head around being AuDHD, as it tends to be known online. It’s a strange piece of information to arrive at at almost 50 and I still can’t help but wonder what my life would have been like if I had had the support and understanding that seems a lot more available to today’s children. It’s been rather a year of reinvention and looking back on the intervening months it feels like I’ve reassessed almost every bit of my life – not all because I’m looking at the world through newly-recognised neuro spicy lenses.

But that wasn’t all. In the depths of the first pandemic winter it seemed as if the quiet darkness of lockdown would bring a reassessment, an interlude for a collective taking stock. Even by the second pandemic winter it was becoming clear that a great readjustment wasn’t really going to be forthcoming.  Brexit had left a stain so deep that it clouded the perceptions of those who heralded it as a new dawn. It left a space that could be filled by nonsense, by conspiracy theories and even more fake news. With the pandemic those lies blossomed into something even darker and they haven’t gone away. Even as the threat of sickness recedes I still find myself using sanitiser whenever I touch something outside. I wear a mask less often but always have one on me. I guess this is normal behaviour after a major public health risk but it has meant that life has been held at arms’ length for a very long time now.

But it wasn’t just the state of the country, the state of the world, of the planet that kept me away. My default view of humanity is that it’s on the road to nowhere and I’ve always been fascinated by dystopias so the current hell scape I can deal with. In the southeast of England we are on the nursery slopes of a dystopia anyway. If you can tune out the Brexity lunacy it’s dealable with. No the reason why I haven’t written ANYTHING in a long time is because I’ve been trying to work out where my voice has gone.

Last year I turned 50. It wasn’t a great year – our beautiful cat reached the end of her life, I became a victim of academic cost cutting and my teaching has dwindled to a tiny amount. The kind of knocks that leave you somewhat hollowed out and diminished. For my birthday I finally took the plunge to look into my DNA. I’ve worked in genealogy and it was always something I was interested in trying. I wanted to find out if my research was correct – I had found evidence in my genealogical research that my dad’s family had been Anglo Indian rather than colonial as my mum had always lead me to believe. I wrote about that discovery at the time but was always conscious that all the evidence I had was circumstantial. So I took the test. Going in I thought I had a pretty good idea of the outcome. I thought that on my mum’s side was Welsh and Russian (actually Georgian) as that was what I had been told all my life. I grew up with Russian fairy stories and dolls because my mum was proud of her Slavic heritage. There was a history there, with details, names, dates. That side seemed unremarkable and predictable. I was interested in my dad’s side. The results took a while, as these things do, but when they came they once again made me question my own identity.

You see they revealed that firstly, my research was good. I kind of knew that. I trust what I now know as my hyperfocus super skills. If a fact is there for a subject I’ve got my teeth into then I will find it. There is Indian blood in there but a very long way back, about the same percentage as the Irish bit of my DNA. I’d worked out a very long time ago that I didn’t qualify for Irish citizenship under the grandparent rule. When I started researching my dad’s family it became clear that the direct line couldn’t have come from Ireland for a very long time – in fact both the Irish and the Indian probably got into the mix at roughly the same time, when Patrick Rieley married Sophia in Chennai in 1815. Since Sophia was a pupil teacher at the Freeschool attached to the Female Orphan Asylum it was probable that she was a child of a European father and an Indian mother, a quick assumption that speaks to the sad truth about such families. So going back as far as Patrick and probably Sophia’s mother a generation before, that’s not going to leave a very large percentage of either nationality in the DNA.

The surprise was the far greater percentage that was missing. I had always been told that my maternal grandfather was Georgian and his meeting my grandmother during the war resulted in my mother. That should have meant a biggish chunk of around 25% Georgian…which wasn’t there. In fact there was nowhere in that direction anywhere. My grandmother was rather known within the family as a bit of a spoofer but this news gave me a new respect for the sheer breadth of her spoofing. She had created a  phantom lover with a phantom family. His mother, my phantom great grandmother had supposedly turned up for my mother when she was about 6. My mum told me the story as gospel. But those results couldn’t be that wrong. Despite the fact that I have it on good authority that my golden eyes, pale skin and dark colouring are typically Georgian it turns out they are just a mix of Welsh, Irish, Scottish and Indian. I’m happy with that but what unsettles me is the sheer depth of the fantasy that grew up around my mother’s parentage. It shaped her, it affected her relationship with her real dad (and judging by the amount of Welsh in me he was definitely her dad) and both she and, I think, my gran believed the story. I have an inkling why the phantom was more attractive than the truth but it will take a lot more unpacking before I can put all my thoughts on that into words.

It was putting thoughts into words that has been the difficulty these past months. Turning 50 was a much bigger deal than I had expected. It’s a time of reckoning, a time for re-evaluation and it really didn’t help to have so much other stuff whirling around in my head and coming to the realisation that the forgetfulness and constant aches and pains were actually part of a fundamental shift. I’ve been used to a particular hormonal pattern for most of my life, to suddenly realise that that was coming to an end is both liberating and terrifying – if I could remember the words for either of those feelings.

Then in February this year we became another statistic. One of the households chucked out of rented accommodation because of financial pressures on landlords. We found somewhere new and it is lovely but it’s been a huge upheaval. At least I know now why I don’t react to change very well.

So yeah, it’s been a bit of a year or so. I’ve come out of it with a lot more knowledge about myself and after a very long time, I feel I have something to say again.

I’ll try to blog a couple of times a week to get back into the routine of it. After such a long time feeling silenced the thoughts are bubbling up again. It’s been a while but I’m back. Have you missed me?

 

A Different Operating System

Autism is having a bit of a moment. You must have noticed – you can hardly turn on the television or look on a news site without hearing someone famous has been diagnosed or some new understanding has been reached. It wouldn’t be the first time the media have seized on a subject and run with it but I have a sneaking suspicion there’s a perfectly sensible reason for the sudden approved awareness of autism. There’s certainly a reason why I’m noticing it more, which I’ll get to in just a second.

The last two years have been hard ones. Waves have lead to lockdowns, separation from the normal hustle and bustle of life. In the midst of all this death and uncertainty, a lot of people have had a chance to reassess, to look inward. For those with mental health illnesses it has been particularly hard as the constant change and the sense of unreality that comes with living through a global event. There is no way of avoiding the news. I started lockdown, way back in March 2020 with the intention to ride the waves and keep safe. I read up everything I could on masks and pandemics, then baking and dyeing techniques, then sofas – did you know how many webbing patterns there are for Ercol Windsor sofas? That is always how I have approached life, I research, I become an expert on tiny sections of things which stay lodged in my brain for years to come. The pandemic made me go into overdrive.

But as the months dragged on I started to think more. I started to realise that my reaction to staying at home all the time, to having control over the people I saw, the places I went, being able to cocoon myself in comfort when I felt anxious, to be childishly indulgent if the mood arose. It was only earlier this year I realised that all these little things, My geekiness, and antisocial tendencies, my weird tastes (when I like a food I will quite happily live on it for a prolonged period), the almost fetishisation of  certain combinations of colours and textures and the tendency to almost instantly want to make friends might actually all be part of the same thing. For the first time in my life the collection of quirks and twitches, strengths and weaknesses that go to make up me looked like they actually had a shape together and a name. A few weeks ago, I was given that shape, named that name. I am autistic.

A few short months ago if you had asked me about autism I would have pictured a little boy lost in a world of his own. I had assumed that autism, like ADHD was a childhood condition. When I was a kid autism was quite simply not something little girls could have…a bit like Scalextric and Meccano. Even if I had been tested for it back in the days when Jimmy Saville and Rolf Harris did children’s programmes and Liberace was the housewife’s favourite, I wouldn’t have been diagnosed as I don’t fit the diagnosis – I’m chatty and have been known to run into the centre of crowds. People often mistake me for an extrovert. I would never have fitted the diagnostic parameters. But science evolves and learns new things and is currently very interested in learning about women who were missed when they were children. It’s very common for women to be diagnosed as adults because, not only did we not fit the profile, we are also a lot better at “masking”.

All my life I’ve treated fashion as a costume. I dress as the person I need to be at any given moment. I have outfits that are my journalist outfits, other ones for when I’m teaching and if I’m doing something as a writer then it’s a different costume again. All this, I learn now, is masking. It’s why I feel all peopled out if I’d had a particularly social whirl (or met more than three people at once, to be honest). I’m happiest at home with time to think. My brain sometimes gets jammed with everything and just needs to be quiet to filter everything out. When I’m calm and have space I can think the world, but when the noise gets to much and chaos crowds in, it feels like a limiter has been placed on my brain and I simply can’t function.

I’ve heard autism diagnosis being described as “finding your tribe”, “finding out what planet you are from”. For me it has been a Kaiser Soze moment where everything fell into place and it keeps falling into place to this day. It’s not something that changes who I am but it sure as hell explains a lot. My brain isn’t weird or wrong in anyway, it’s just wired differently. It means that some of my senses are up to 11. It means that some things I just don’t get – I’m utterly rubbish at reading certain social cues. It means that when I get tired and overwhelmed I just need to stop. Most of this is just stuff that is intrinsically me so it’s been odd realising that actually it’s part of a state of being. I hadn’t actually realised that most people don’t experience the world the way I do (although, really I should have taken the hints a very long time ago).

I’m currently waiting to find out if I also have ADHD, a combination that isn’t that unusual but that would explain a great deal about how I work, and why I’ve struggled with certain things. All of this also goes some way to explain why I’m writing this this evening. I have always found it easier to write about emotions than to demonstrate them. This is a big enough thing about myself that I want to tell everyone – not just those who’ve supported me and been my friends but also those who didn’t give me a break for things I know now I had no control over. I feel like shouting it from the rooftops. I am explained!

Of course, it’s not as simple as that. This knowledge is simply good to have. It allows me to understand myself better but it is not the whole story. For the first time in a very long time I feel like a whole person. I no longer feel fractured but a complex, complete entity. It was a strange thing to find out as a result of lockdown but there you go. And perhaps that’s also why autism is having a moment right now.

© 2024 Abigail Rieley

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