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Where do I begin?

I started writing this blog in 2010. When I look back at the first post which is here , I feel exactly like I did in that moment but at the same time, like an entirely different person. A blog is only a snapshot of carefully curated thoughts however, I remember and relive them with such clarity, it's no longer a surprise that I can't remember the dull, mundane and boring aspects of life.  I stopped writing for a really long time because I couldn't articulate the tidal wave of emotions I was feeling after my BOGF diagnosis in 2017. I did in fact get two free labels (ASD and PTSD) even though I only ever signed up for an ADHD diagnosis. I couldn't talk about certain aspects of the process or the consequences because it is not just a story about me. My body did, entirely keep the score as I painfully discovered.  A lot of the things I wanted to say, where things that people didn't want to hear. Society is very selective about what subjects are appropriate for discussio
Recent posts

Is it insomnia or is it just roadworks?

I’ve stopped defining myself as suffering from insomnia because otherwise it would make my whole life a tragedy. It’s not even correct to describe myself as a “bad sleeper” because that implies that there is the potential of a better me existing: a superior Susie whose worth is more significant because she sleeps. Right from day 1, this has been a complaint and judgment made against me. All of the worst diagnosis of disordered existence measure your ability or inability to sleep. I regularly fail to achieve the recommended hours. I once spent a night in the Royal Free Hospital, to see if “someone could get to the bottom of this.” It’s ironic to note that I wasn’t quite sure what the point of this sleep deprivation trial was at the time and google wasn’t available at the time (early 1990s). I’ve just googled it and still haven’t got a clue, but it seems I could pay a lot of money if I wanted to investigate further at any point. I doubt I am the only late diagnosed adult to have been

Esther Whitney

What I would like more than anything else as a result of my PhD, is for research about autistic people to be directed by, include and be accessible to autistic people and so I have started to look for people that might be interested in contributing their creative stories. The first person I spoke to was Esther Whitney following the Play a Part : Beyond Stereotypes conference in September 2012. Esther is currently completely a Masters in Research  in Education exploring the lived experiences of autistic adolescent girls in mainstream education. As part of her plan for her thesis, she created the following art work to express her own lived experiences of being an undiagnosed autistic student in a mainstream school. Esther Whitney 2021 They say a picture says 1000 words. I often feel that art explains my experiences as a autistic person far better than words ever could and for me 'the artist' I find it a relief to be able to communicate on such a deeper level my experience than b

A pig dressed in cowboy boots

Who does actually have the power in society?  Day 11 of the Brooklyn Art Library 28 Day Challenge A pig dressed in cowboy boots Some people give nothing away with their facial expressions. This is often referred to as masking and it is not just autistic people who mask, everyone does it at some point in their lives in order to survive. I watched the BBC documentary 911: Inside the President's War Room  recently where  George Bush, the president of the USA at the time of the 911 terrorists attacks, was being filmed live as he was informed of the unfolding events. This photos shows the moment US President George W. Bush had a school reading event interrupted with the news that the first plane had crashed into one of the twin towers in New York, 11 September 2001 (Paul J. Richards - Affiliated Free Press via Getty Images). As the day progressed and the horror continued, it becomes very much a question of power and his ability to control and contain his anger . This wasn't someth

The sound of silence

This morning I have woken up early after making the decision not to go for a run. I feel so overwhelmed after reconnecting with my  autistic self that my head feels funny. I feel like Josie did when she was younger and wanted to know how black holes are made so we went to the planetarium to find out. I feel like my diagnosis was the big bang and I’m still dusting off the debris and rebuilding the authentic Susie. I can hear the omnipresent low level white noise after shock the sonic boom. My autistic ears are the most significant aspect of my diagnosis, the most noticeable change. It’s very much like now they have been given recognition, I can’t turn them off. They are continuously screaming at me, “you feel sound” . It’s noises that wake me up at night. The hearing part of my brain can’t step away from the hyper vigilance caused by the avalanche of trauma I’ve had to revisit in the last 4 years. The are the main character. I used to think there was something wrong with my hearing b

A nice cup of tea

In non- Coronavirus times, you can often tell a lot about someone by the way they present themselves on social media, but now more than ever you can see their underlying values. Some people post motivational memes, others are political, there are people swept up in fear perpetuated by the media, the virtuous, the community builders, those embracing the chance to appreciate what they have, the commenters on behaviours, the manipulators and the exploiters. I tend to fall into many of those categories, however I view capitalisation of self-interest to be abhorrent when society is relying so heavy on lower paid workers risking their lives to support others. It’s not a time to take advantage of the misfortunes of others, to attribute financial value to your self importance and to hide your actions from people who might challenge the ethics of such behaviour. This is a time to share and care. A time for compassion and understanding. There will be plenty of opportunities after lockdown to reb

How do you feel about fireworks?

Happy 2019!  Fireworks over Alexandra Palace - this is what fireworks meant to me for years I appear to have taken a break from blogging, not because I wanted to but because I couldn’t find the words. I wonder if writers’ block is just a fancy way of saying, “I lost all of my words.” That’s what happened to me, I lost nearly every single one of them for quite a lot of the time for over a year. There were of course a million thoughts in my head, going at a million miles an hour but they were all caught in a massive tangle of scribble. There was no way of logically stringing them out into sentences.  Scribble it Away  That’s how I feel about fireworks. However it might be more accurate to describe the millions of trapped unspoken thoughts as a blaze in a firework factory. The easiest response to explain is the sensory overload. They are pretty, there’s no doubt about that, but they are so noisy and triggering for my hypersensitive sense of smell. I can feel the crackle of fireworks radia