An Overdue Update

So, it has been a while. It’s not that nothing has been happening, it’s deciding what to write about and not being able to make a decision.

So for an update on where I am at.

Short version:

I am at what I will call stage two of getting a diagnosis. My daughter has been diagnosed as high functioning level one. She has issues with auditory processing as well as the usual social stuff.

Slightly longer version:

After waiting four months for my initial appointment with specialist psychologist who is the only one in the area qualified to do the diagnosis I have had my initial appointment and I show enough signs signs to proceed with an official diagnosis. I have done several online questionnaires, have a couple of ones I have to print and and do yet to complete but my next appointment is in another three weeks so i have time to process. There is no rushing this process.

But, my daughter who lives in Queensland was diagnosed the week after my initial appointment and she only started pursuing a diagnosis after I told her I was.

That isn’t quite like it sounds.

My daughter is doing psychology at Uni. In one of their first classes they are told not to self diagnose and also told if they can’t diagnose themselves with at least one condition that they aren’t really trying. When doing the class that covered autism my daughter resonated strongly with a lot of the indicators. She discussed this with her fiance (also studying psychology) and they decided that they shouldn’t self diagnose and she moved on. Then two years later I come along and say I think I might be autistic and she decides to pursue a diagnosis for herself. She has lecturers and all sorts of other contacts she can use can navigate what needs to be done much easier than your usual person on the street who is a square one. She knew where to go and who to ask when you don’t have a pediatrician. There is also a lot shorter waiting list where she lives to get an appointment with those qualified to give an official diagnosis.

Back to me.

One of the questionnaires they ask you to do is for a family member or other person who knew you as a child. Well, I am over 50 years old and my Mum passed away over 10 years ago. My Dad is pretty much blind and was a hard working sole bread winner when I was younger. He wouldn’t be able to read the questions and I’m not sure he would know the day to day issues his children had when they were young. I therefore asked my older sister if she could give it her best shot. There was a bit of discussion as she was the first person I had come out to apart from my husband and daughter. Turns out my sister has had work colleagues ask her is she might be autistic. Personally I think a lot (just about all) of my family is probably autistic but given they live interstate I am waiting to tell most of them that I am until I get that little bit of paper that tells me so. There are a couple of added on family members that I don’t want to deal with until I have it in writing because they will know better than I do and I don’t want to deal with that shit without a written ‘fuck off, you don’t know what you’re talking about’. Probably harsh but there have been too many instances in my life with other people telling me they know me better than I know myself. I want to have the proof that I know me before they start trying to tell me I don’t.

So, summing it up, I am on my way to an autism diagnosis. My daughter has an autism diagnosis. The rest of my family probably is autistic but we aren’t telling them that we are until it is official.

I don’t think it will make much difference to my siblings but if there are signs in my younger nieces and nephews or in my older nephews kids then I would like to do what I can to give them a chance at a life less difficult than mine.

Boxes, Lists and Ants

I have always been a box thinker. The boxes that hold my thoughts are neatly stacked, clearly labelled and cross referenced to within an inch of their lives. The labels may fade over time but I still have a pretty good idea where everything is. Occasionally something may happen in life where a box gets moved, or shaken or the contents taken out. It will take me a few days to resort, refile, and get the cross referencing back up to date. Once in my life I had all of my boxes shaken, moved and emptied. I discovered that some of my behaviours weren’t as justified as I thought, my Autism had been lying to me. Just because someone didn’t do what I thought they would or should did not mean they were wrong. That one shook me quite badly and it took me a while to sort all of my boxes and redo all of the cross referencing. I not longer trusted myself. I have managed to put myself back together but this post isn’t about that.

I also have lists. I always have lists. I have lists of lists. Some are written just so that I can get them out of my head, but most are in my head. I wake in the morning and my head immediately starts listing what I need or want to do that day. On a bad day I list everything involved in actually getting out of bed. But this post isn’t about that either.

This is about ants.

The other day my husband came home from doing the shopping. (I love him so much for saving me from supermarkets). I thought I would be helpful and meet him at the back door to take the groceries from him because I knew he had other things in the car to get out and other tasks to do outside. While I meant well it was not a good thing for him at the time. We are both adjusting to this whole Autism thing but he explained it brilliantly. I had put a rock in front of his ants.

If you have ever watched ants they follow each other on the same trail, running backwards and forwards to get their tasks done. They know where they are because the other ants are there to tell them. If you put an obstacle in their way they group up until a scout ant finds a new trail to get around the obstacle and rejoin the old trail if possible.

Ants are a gentler form of lists. The brain has taken the tasks that need to be done and organised them in a logical order. By taking the groceries from him, I had disturbed the trail his ants were taking. He needed to take a few moments to rejoin where his ants currently were (standing at the back door) to the next logical step now that entering the house was no longer required.

Ants are a great way to explain things. ‘Will your ants mind if I do this now instead of later’. ‘I can’t deal with that now I’m dealing with my ants.’ They take the personal out of it. Its not about me, its not about him. Its about the ants. We both know that the ants are autism but the ants make it not about that either. Its also become a bit of a code when we are out and about in public. We can let each other know where we are mentally at without having to bring attention to it. At some time family or friends will ask what we are talking about and by then we may be ready to let them know.

If you wish to extend the analogy, never step on someones ant nest, the ants will swarm up your legs and bite the living shit out of you.

The Problem With Christmas

I am not against Christmas as such. For years I have had issues with December. Could never work out why. I knew I didn’t like the crowds at the shopping centres but didn’t know why.

The problem with Christmas is the amount and types of input which are not there for the rest of the year. Everywhere you go there are Christmas decorations and carols. So much more noise for the eyes and the ears. A whole month of everything shouting at you.

The social gatherings. I love to catch up with friends. Catching up with people I am supposed to like (relatives I don’t relate to) is a whole extra challenge. Being in extra social situations with people you don’t know that well, trying to work out the different social rules that apply only to this time of year and not the social activities that you normally attend, not easy. To do this while the background is already screaming at your eyes and your ears, that is an extra challenge.

At all these social gatherings there is Christmas food. The stuff that is only brought out for special occasions. An assault on nose, an attack on your taste buds and the textures? We wont go there.

So yes, this wonderful time of year, of catching up with friends and family. Of social gatherings and sharing the love. It overloads my eyes, it attacks my ears, I don’t understand the food and I have to be polite in ways I don’t know how to people I don’t know about things I don’t want.

I love the true, simple meaning of Christmas. I love to watch people I care for open a couple of gifts that mean something to them, that they wanted and will use, and are truly happy to receive. My ideal Christmas lunch is a simple meal, with everyone doing a little bit to help. Not masses of food with leftovers to feed an army for a week. We dig / pick / gather the veggies from my Dad’s garden. We pod / cut / prepare said veggies. There may be one or two meats. Favourite dishes for all of those in attendance. A nice but simple dessert, probably involving more of my Dad’s produce or things from my siblings gardens. Things we have all loved since childhood. There will conversation, all will feel comfortable to participate. Random subjects, random comments, laughs and reminiscing. Stories of lives shared or the bits we weren’t there for.

There is no huge production. No loud relatives that dominate the occasion. When we leave, we want to return, we feel happy, charged, complete. I have no problem with that.

Why Haven’t I Written?

When I started this blog it was with the best of intentions. I planned to pace myself, not overdo it and not give up on it but keep it going as a record of my journey. I was going to write one post a day. Either a diary entry or my thoughts on something.

Every morning I have woken up with the blog in mind, working out what to write that day. Most days I have had more that one idea, often two or three. And therein lies the problem. I could not chose. And because the rules I had set myself were to write one post per day, and ONLY one post per day, I could not write.

And now, because it is so long since I have written, the rules have definitely been broken. Therefore the rules do not work for writing this blog post. Therefore I can change the rules. I will write when I have post subject in mind. I may write one post a day. I may write ten posts per day. I may write nothing.

The next hard bit will be deciding what order they get written if there are more than one a day. Wish me luck.

Diary: working things out

So, last Wednesday was amazing. Last Thursday was pretty good. Got up, did some errands in the morning, went to volunteering in the afternoon, went shopping after that and then out for dinner with friends. Pretty full day by most standards.

Friday I couldn’t get out of bed. When I did I had one of my sick headaches. Best treated with minimal input and bed rest. It was a bad one. After I finally threw up around two in the afternoon, I knew I was on the mend. Saturday was a quiet day. Grazing to catch up on missed meals and making sure I kept my fluids up. Sunday was an improvement, starting to function again. Today is going well.

There is a good chance my husband is on the spectrum too. We are working out how to not be masking when we are at home. We have gottten into bad habits of trying to be normal. It doesn’t work for us, never has, at least now we have some idea of why. The rules are changing and we are working out where we stand.

The prognosis: so far so good. Both learning to let go of a whole heap of stuff that doesn’t matter. Starting to get my mental energy back.

I wouldn’t have said so last Friday morning, but the future is looking brighter.

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.

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