My pet, Autism. 

I’ve decided to rename my dog. 

I’m going to call him Autism. That way, I can say I’m “living with Autism”. And when he barks too much, I can say I’m ” struggling with Autism” and “Autism has so many challenging behaviours”. When my son takes him for a walk, I can say “there goes my child, with Autism”. And when he chews my shoes, I can say “I hate Autism”. And when he licks my face, I can say I’m “touched by Autism”. 
Yeah, I think I’ll do that. Because that’s the only way that language like that makes any sense!

[image of a Jack Russell terrier, sitting on a picnic table, looking adorable. ]

  

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April Colours. 

As it stands, April makes me blue. I am lit up. I am cold. I am depressing. I am like a deep blue pond, impenetrable, unknowable. Austere. Severe. I cast a long blue shadow. 

I could be Gold. Bright. Shiny. Rare. Precious. Gold doesn’t tarnish. Gold lasts forever. But gold on its own is weak. It bends easily. It’s shiny, happy, but doesn’t have enough of a hard edge. Gold swords in Minecraft only offer limited protection. I may mix in some gold, to emphasise my joy and my shine. But gold on its own is not enough for me. 

Taupe? What colour is that, even? That’s the colour chosen to parody the other colours. Tone it Down Taupe amuses me no end. But the point of it is that we should wear it to help those unfortunate victims of Neurotypicality Spectrum Disorder. Those poor fools who can’t stop chatting and making eye contact. And I don’t feel like supporting them. They scare me. And so I won’t be wearing taupe. 

And so finally I land on red. Roses are red. My favourite flower. Red is the colour of love, of hearts. My red heart is beating for those I love. All those struggling beside me to counter the blue. Red is also the colour of anger. Anger that we are so misrepresented, called a plague, an epidemic. Anger that we are locked up, chained, abused and murdered. Anger that everyone is aware of us, but so few accept us. 

And so, this April, and every April, I will be wearing #RedInstead.
 
[image is of of my feet, in grey socks, wearing my red shoes, which have silver flowers on them. They are a bit battered and dirty as they are the only shoes I wear and I’ve never been good at cleaning them.]
  

Friendship, in the context of undiagnosed autism

I have had three good friends in my life. At least, they were good friends to me but I’m not sure I was a good friend to them. I thought I was, but I now realise that’s because my perception of friendship was skewed by my autism. For the purposes of this post, I will call my friends A, B & C. And describe our friendship, starting with the one that lasted the least amount of time. 

I met A on my first day of university. We were both looking at the map (me because I love studying maps, I actually knew the campus quite well),  and I thought she might be from out-of-town and maybe lost, so asked what department she was looking for. Turned out we were both going to the same place. She was indeed from the country, and didn’t know a soul. I spotted some people I knew from school and we tagged along with them. Soon, it was me tagging along, while A flitted from one set of friends to another, seemingly at ease everywhere. We both joined the karate club and bonded over that. Not much chat needed while punching each other! We went clubbing together, we hung out, I even stayed over at her parents house once or twice. But we never really chatted too much. I never really knew what was going on in her life. I never really asked. We drifted apart after we graduated. I bumped into her years later. I was married and pregnant. She was on day release from the locked psychiatric ward of the local hospital. I didn’t know what to say. I regret not at least getting her number. I think of her often. 

B was a new student at my secondary school. Before she came along, I had hung out with two other oddballs, one a Jehovah’s Witness, and the other a chronically ill girl (turns out she has EDS. What are the odds of that?). We were the three ‘rejects’. The kids nobody else really spoke to. So we sat together at breaks and bitched about life. B was different though. She was inclusive. She invited me to her birthday party (my first in ten years, after a few disastrous invites when I was 6), set me on a date with her brother (my first boyfriend! Lasted all of two awkward weeks) and let me tag along with her. I quickly absorbed her likes and dislikes, read the books she read, obsessed on the same bands and tv shows. We used to go to concerts together, of an Irish choral group who performed in old churches and sang ancient songs. Not much chat needed there either. When I lived in Boston for a year, we became old-fashioned ‘pen-pals’ and wrote each other long letters. How I used to wait for the mailman! For years I would have considered her my ‘best friend’. We each got pregnant around the same time, her first child being five months older than mine. And when I lived nearer her, we would often meet for coffee and our kids would play in parallel. After a few years though, I moved away.  I talked about her constantly, even to my mother-in-law. But I didn’t actually talk to her all that much. And then she finally emigrated. I didn’t realise there was a need for talk. That I should have asked how she was, how she was getting on. I never occurred to me to. I thought thinking about her was enough! And so, I never knew that herself and her family were homeless for a while. I’ve now learnt that I am way down on her friends list. Yup, she made it clear that I’m not a good friend at all. 

C is the friend I’ve known the longest. Our moms are best friends. (In fact, her mom is my moms only friend. Familiar?!) We grew up down the road from each other. We went to primary school together. I used to call round to her quite often. We played this game I liked, where we’d write out questions and quizzes for each other (what’s your favourite colour, what actor do you fancy, what job do you want when you grow up) and then swap to read each other’s answers. No talking needed! Or we’d bring her dog for long walks and chat side-by-side (no eye contact needed!). Or her family would take me to their place in the mountains and we’d go exploring the streams and bogs. And again, her likes influenced mine. The fist tape I ever bought was ‘Kylie’, because that’s what she listened to. And I developed an interest in baking Devil’s Food Cake with her, though I never really ate it.  We kind of kept in touch, via dog walking, through secondary school and university, though we went to different ones, and had occasional nights out together. Eventually she got a job in London and that was that. Again, I never really initiated contact, nor really asked how she was doing. She got married, moved countries a few more times, had kids, and has now returned to London. Our mothers are still best friends. And it’s through the ‘mommy grapevine’ ( we coined it that when my mom told her mom who told her, that I was pregnant, before I could tell her.) that I learnt that she is going through her second bout of breast cancer. And, this time, I’m really trying to ask her how she is. I still don’t know what to say. But I’m going to try to learn. 

Through thinking of these three friendships, and the themes that run through them, I am learning so much, and seeing how so much can be explained once explored through an autistic lens. How I used imitation and being a chameleon to try to form bonds. How I developed ways to connect without having to chat too much (and never on the phone!) or make eye contact too often. How I genuinely care, but don’t know how to express that in words or deeds. How I’m not too clued in on the give-and-take of friendships ( I feel guilty I take too often). How those friends meant the world to me, I had so few, but I was only one of their many many friends. And how much maintaining friendships takes so much out of me. But I’m going to keep trying, and maybe I’ll still have one when I’m old and grey. Because everybody needs at least one friend. 

  

Happy St. Patrick’s Day (and never ever St. Patty’s Day)

St. Patrick’s Day is here. While the Galway City Parade came and went, a five minute walk from our front door, our family stayed indoors, variously playing Minecraft, reading books, or working. Not for us, the crowds and drunk teenagers stinking of vodka and vomit. Usually we can’t see the parade (we’re too short plus don’t like pushing through the crowd), it’s too cold (though today was warmish), and standing for long periods doesn’t suit us. I did pop over while walking the dog, which he enjoyed, he’s the most sociable member of the family. But, for the rest of the family, it’s just another normal day. Though without school. Very chilled out and relaxed! 

Anyway, here’s a nice little article on why it’s St. Paddy and never St. Patty. There’s a whole hashtag for it on Twitter. #paddynotpatty 

[ image is of a drawing of a shamrock, on a green background, below which are the following words in white: Happy St. Paddy’s Day. Never ever St. Patty’s Day. ]
  

 Executive dysfunction; oh what a mess!

I recently came across the concept of executive dysfunction, and how it relates to autistic people in this series of articles by Cynthia Kim. The theory is that problems with executive function may explain a lot of the difficulties autistics have with activities of daily living. Like everything, though, it’s a lot more complicated than it appears. This  lengthy meta-analysis of research into executive dysfunction in autistics shows many flaws in how studies were set up, with the results often not teasing out what was caused by autism and what was caused by having an Intellectual Disability. Also, when more nuanced tests were performed, it showed that autistics did OK until a certain level of complexity was reached. And, as always, not enough of the tests were conducted on adults of average IQ. It is likely that problems with executive function effect some autistics more than others, and that some may do ok in some aspects of executive function but not other parts. It’s a very broad area and very complicated. 

How, you may ask, does this effect me?  It seems executive dysfunction may go a long way to explaining some things that I used to think were just me being ‘lazy, messy and forgetful.’  I find it very hard to start tasks, to remain on task, and to complete tasks. For example, as a child I’d decide my room needed tidying. It was my refuge and safe haven, and boy was it messy! It’s not that I like living in a mess. I detest it. But have always had difficulty with tidying up. Once a week, the cleaner would tidy it (during that period where we could afford a cleaner) and I used to feel so happy. But when I tried to do it myself, I quickly ran into problems. 

Where to start? What should I do first? Start from the door and work my way in? Clothes first? What’s dirty and what’s clean? What was I doing again? Oh, look, a book I never finished reading…. And I’d end up lying in bed, reading a book. And all due to trouble with executive function. 

These days, I still have trouble in this area. My short term memory is atrocious. So much so, the kids call me ForgettyFace. I rely a lot on schedules and lists and timers. And then forget to use them. Compounding the issue is chronic pain and fatigue. And the result is… well, a house a lot less tidy and clean than I would like. 

I came across a few resources to help me. First of all were the books of Marie Kondo. They have helped me make a start on decluttering. Except I keep forgetting to then bring what I don’t want to the charity shop. Then there’s 30 Days to a Clean and Organised House. Hmm. Can’t hurt, right? And finally this nifty little app Unfuck Your Habitat

Obviously, executive dysfunction causes me a lot more trouble than just having a messy home. But right now, the mess is the most distressing thing for me. Hopefully these resources will help me make a dent in the mess, and lead to less stress all round. Wish me luck!!!

[imagr shows the front page of the Unfuck Your Habitat app. Included in the list of clickable items are:

Random Unfucking Challenge 

My To-Unfuck List

Challenge by Room

Random Unfucking Motivation 

20/10 Timer

My Unfucking Achievements. ]
  

Bombs on my brain. 

CN: deaths, injuries

Istanbul 28/06/2016 45 dead

Istanbul 19/03/2016 4 dead

Ankara 13/03/2016 37 dead

Ankara 17/02/2016 27 dead

Istanbul 12/01/2016 10 dead

Istanbul 23/12/2015 1 dead

Ankara 10/10/2015 105 dead
Many more, in many cities in Turkey. Countless injured.

And across the Middle East, Africa, Europe, the globe.

Ankara, Beirut, Brussels, Cairo, Damascus, Erzincan, Paris… And on and on through the alphabet of my mind.

And each bomb explodes in my head, shatters my heart.

And so, yet again, I am in mourning.
[ image of a Turkish flag, made of a tile mosaic, overlaid with a faint Canva watermark]

A Warning to Passive Aggressive People

I’m writing this after reading a passive aggressive text message from my sister in-law. Though my husband says there’s not anything passive about it. At the same time, I can hear the radio blaring opera very loudly from next door. My neighbour’s passive aggressive response to our dog barking at the cat who teases him from high up on the fence. And so, I’ve been thinking a lot about passive aggression and my reaction to it. 

My father was quite passive aggressive. He learnt from the best. By that I mean his mother, the Queen of Passive Aggression and Guilt Trips. For that reason, my Passive Aggression Radar is quite fine tuned. I pick up on it quite easily, even if it’s very subtle. So, it’s not that I don’t understand it, it’s that I just can’t stand it. 

Say it to my face and I’ll have more time for you. Tell me I’m arrogant, that I’m a bitch. I might even apologise and try to change. 

But talk about me behind my back, play mind games, play the martyr, make me cry with poison letters, and you will bring out the worst in me. I will do the things that annoy you just to spite you. That, I take after my mother. Even if it takes me years, I will go after you. Like my mother used to say about herself : ‘I’m like an elephant, I never forget’. 

[ image of a large grey elephant on a white background. Above the elephant are words written in black: Like an elephant, I never forget… The image contains a watermark of the word ‘Canva’.]