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Diary: A Meeting (yesterday)

As part of this journey of discovery I have met with a person with knowledge of and a diagnosis of high functioning autism.

Last Monday my husband tried to find the local support group. They had moved. He tried their phone number. They were not the sort of organisation we were looking for. He went to the local tip shop (it is run by Aware Industries who have autistic clients). They couldn’t help us per se but the lovely lady there knew a lady who might. We got her contact details and my husband rang her. She sounded very promising. I should call her. I couldn’t. I wanted to. I very much wanted to. But I couldn’t. I told my husband, I cried. He called her again and organised to met yesterday morning. He was coming too.

It was amazing. The conversation danced. We talked about four things at once and understood all. There were asides, and detours, and backtracking. There were a couple of squirrels. It felt so good and so right. We talked for three and a half hours and none of it was bad. It was so good.

Yesterday afternoon I was tired. Too tired to do much. It was a good tired. Like you had had a busy day doing very productive things.

Today I woke up and wanted to do it again. Unfortunately I have to spend today in the real world with the normal people.

Mt Stompy Two Year Old has a Sister

About six years ago I burnt out. Badly.

I was trying to manage my workload. I was trying to tell the boss I was overloaded. His response: ‘Everything is fine’, ‘No-one else thinks that’, ‘It isn’t in the budget’. He told me to delegate. But who to? My second wasn’t interested ‘That’s not my job’, ‘I don’t get paid for that’. I tired to defer as much as possible to times that weren’t as hectic.

One day I get an email from another manager asking me to do a task, it would take a few hours. I emailed back, CC’d my boss, saying I would do it next week when I was fully staffed again. It was something I thought could definitely wait, not something I couldn’t be bothered doing.

The email reply from my boss? ‘Nike – just do it’.

I quit the next day. In an aside, they hired two people to replace me and the wheels still fell off.

Anyway, since I left that job, I have had a stompy two year old. Whenever I want to do things that remind him at all of that situation, he stomps his foot and says ‘NO!’ I want to get another job because we could do with the money. NO! I want to find a course to study. Maybe. So I can get a job. NO!

For the last six years he has ruled my roost. Stopping me from moving on. Stopping me from starting again. He doesn’t want me to do things that may mean I end up back there again. No way.

Today I met his sister. After I decided to take the day off from me, and my husband and I ventured out into the world, I felt happy. And I saw her.

My stompy two year old is boy. He wears a dark grey suit with matching shorts. He has a scowl on his face, arms crossed on his chest and he stomps his right foot when he says ‘No!’

His sister is blond, she wears a blue dress. She dances in a meadow with wild flowers and laughs and sings.

I think I can see hope. I think I can see a way forward. I don’t think he rules my roost anymore. If his sister is like anyone else’s sister, she will make him mind his manners and be polite. I expect it might take a while.

I am looking forward to a future.

Diary – A Day Off

I need a day off from me, from overthinking, analysing, and watching everything I do. I need to get out of my head, away from the scripts and conversations that just keep running. I need to be distracted by the real world.

I realised this. No melt down. No drama. At home by myself, my husband is out doing the grocery shopping (me and supermarkets is a whole story of its own – not today, today I am having a day off).

I messaged my husband while he is at the shop: ‘I need a day off. Are you up to going out and doing something? I need to get out of my head’

His reply: ‘Okay’

It sounds so simple. I feel so proud of myself for asking for help. I love him so much for being so supportive and always being there for me, even when he doesn’t understand me. I can’t expect him to understand me. I don’t understand me.

He is home. I should help with the groceries, it is the right thing to do. Then we will get me out of my head.

Burrs and Swiss Cheese – a game of memory roulette

I am lousy at remembering people’s names. I try, but right at the point they are saying their name my mind has wandered off and isn’t paying attention. I want to remember names, I have tried all of those helpful hints. They don’t work if you miss the name in the first place, or if when really, really trying you try one of those hints and you think you have their name tucked away but you totally missed the rest of the conversation because you were trying to remember their name, and now you don’t know if you want to know them anyway. And which distant relative did they have a name like again?

And the days you remember everything. Every single thing. Nothing of interest happened, but you remember it. I can hardly remember my wedding but that day I had breakfast, read a book, and did nothing much, all there in glorious detail.

One day in year 11 or 12, the computer studies teacher gave a small, seemingly offhand talk on some obscure subject, didn’t seem worth taking notes. On the exam there was a question on this subject and I could remember his talk word for word. The other bits I had studied for, not so much.

I am so lucky my husband has a sense of humour about all my quirks and foibles. He will ask me to remind him about something. I will remember he asked me to remind him, but not what I was supposed to remind him about. I can remember I want to tell him something but not what I want to tell him. I am in the habit of telling him that I was going to tell him something so that if it was something important he knows I tried.

And the useless information I do retain. My mind is a steel trap for information that serves no purpose except trivial pursuit and quiz shows. For all the people whose names I can’t remember, I probably end up knowing their middle name and date of birth, not exactly useful except for saying happy birthday when everyone else forgets.

When I have errands to run I count the number of errands on my fingers, and concentrate on which finger I need to get to. I can feel that finger, like it is being touched. As I complete each task, I tick off a finger. When I get to the touched finger I know I am done. Except when I do a task I forgot about when I started counting fingers. Same number of tasks, maybe not the right ones. Pre-planning my route can help, provided I don’t get distracted by something shiny.

I use a lot of association to help remember things I need to. I remember things as groups, or tag them on to something else. Remembering can be a bit of word association or giving out random facts until my husband guesses what I mean. He can be very good at making sense of random things. You know, that person that did so and so with such and such. Yeah them, well their wife was with the woman that is married to that man that did that thing. He knows, he gets me.

Disclaimers and Explanations

I over explain things. I over explain everything. I want to be sure that it is understood EXACTLY what I am trying to say. I am very pedantic with my words. Each and every word has its own distinct meaning. The subtle differences are important. But that doesn’t stop me using words like thingamy and whatsit when my brain will not supply me with the correct word. I am also known to say ‘the word that means….’ when I can’t think of the word I want but the ones I can think of aren’t right. But people still don’t understand what I mean, and it frustrates me.

Everyone in my family over explains things. When we have been in the car with my family members there have been times when my husband has just wanted to jump from the moving vehicle to get away from us. Sometimes it seems like a competition to see who can be more right. There have been instances of arguments when both parties have been saying the same thing, just differently, and telling each other that they are wrong.

My readings have shown me that many on the Autism Spectrum feel as though they are from outer space. I feel more as though I missed orientation day. That first day when everyone introduces themselves, you get shown round, told the rules and everything you need to know. I never felt I got that. I don’t understand the rules. The way I think things should work, the way that makes sense, is not the way things are. Everyone else seems to get it, I need it explained to me.

Contrary to needing life explained to me, and me being an over explainer, I HATE it when people over explain to me and can’t fathom that I get what they are trying to teach me first go. Yep, I know what you want me to do, you just told me, now please go away and let me do it. I love simple instructions. Step A, step B etc until it is done, that’s all I need. If the instructions are correct, I’m good to go. I love a well written procedure. I love to write a procedure. The steps are how I cope. They are my life. My problem, my death spirals, is when the first step can not be done as stated. I can not skip a step. I want the end result but can not start, I can not reconcile the two. Death spiral, melt down, no more will be done that day.

The beginning

Ok, I’m new to blogging, and new to the idea that I might have Autism. I will be working both out as I go. At the moment my brain is a little prefried. I have so much background processing going on as my brain is putting sticky notes on all my index cards that will need to be changed if I end up with a diagnosis.

Last Thursday, only 4 days ago, I finally googled to see if there was an online test for Autism. There are quite a few of them, I did 6 different ones, they all came back that I may be on the spectrum. I googled Autism a bit. Someone has been following me around my whole life, taking notes, listing the things I do, think and am, and put them on the websites under the heading ‘Autism’.

A bit of background

I am a 51 year old female. Even though I only did it four days ago, I can not remember the reason I wanted to find the Autism tests for myself. I don’t present as I thought Autism was. I don’t think I am like Sheldon on Big Bang Theory. I don’t have, and can not recollect having, an intense interest in any one subject, especially to the exclusion of others.

For quite a while I have felt that I am broken, something of a midlife crisis, I have lost myself and have no idea of who I am, who I am supposed to be or even who I want to be. I have felt so stuck and unable to move. There are a whole heap of events that I can blame for getting me there, but I could not find a way to move again.

I have been medically diagnosed with depression / anxiety. I have been medically diagnosed with hypoglycemia. I don’t know if that is relevant. I have self diagnosed as an introvert, I feel that one doesn’t require a medical degree.

I have previously come across articles on PTSD, and while I felt I matched a lot of the symptoms and behaviours, I could never work out the T that would be the cause of the SD, even for the new research that the T can be a series of events or something ongoing.

The behaviours

So, a lot of my behaviours can be written off as other things if you ask Dr Google, so why do I think I have Autism apart from those quizzes? Its a lot of the other things that I would never have thought had anything to do with anything, and certainly not to do with each other, that has me convinced that I need to chase this diagnosis when I have ignored other paths.

  • Smell sensitive – I am like a canary in the coal mine, I can smell the milk going off days before the rest of my family. I can’t stand most perfumes, and don’t get me started on the gag reflex when it comes to the garbage bin. From about a year old I could not change my daughters nappies, I would be dry retching so loud I would wake up my night shift working husband and he would have to come and change her just so he could get back to sleep.
  • Noise sensitive – please turn that down, it is just yelling at me
  • Touch sensitive – while there are a lot of materials and clothes I don’t wear because I don’t like the feel of them, the real kicker for me is cotton wool balls. I can not touch them. I can not have them touch me. It is like fingers down a chalk board. This is very amusing to my husband, who has, on occasion, chased me around the house holding a cotton wool ball. Strange side note that may be TMI, I wear my underpants inside out so the seams don’t annoy me.
  • Side effects to medication – this one surprised me as part of a diagnosis. I have always been more likely to have the side effects from medications than the cure. I do not take meds for that reason. I was on the pill for 3 years, I tried 12 different types, all had side effects that were just not livable. I didn’t get pregnant on the pill, but given some of the side effects it wasn’t surprising.
  • Sitting on your hands – seriously, how is this a symptom of a medical condition, but it is something I do.

So, yes, while I may be able to write some of the behaviours off to other things, my childhood environment, learnt behaviours, stress, anxiety, introversion etc. I could not deny the above, so, tomorrow I am going to go and see a local support group and find out where I from here.