Diagnosis Progress Update

It has been two weeks since my second diagnosis session. I am still processing it. I will get my diagnosis in another four weeks. Apparently it takes a while to go through everything and work out where somewhere fits on the spectrum.

I have been warned the diagnosis can be a negative experience. I will be told all the ways I can’t / don’t function like a ‘normal’ person. I think I am mostly okay with that. Unfortunately I don’t get told what my autistic super power is. That is something I would like, both having one and knowing what it is. If I had to guess I would say organisation would be in there, and finding stuff, objects and information.

So, between processing what has been, and what may be coming, I haven’t had a real lot of time to think about the rest of my world. I am enjoying the Covid lockdown. Not being allowed to go out and having to keep at least 1.5 metres from other people is very much one of my happy places. I am missing being able to go for drives. I love to be out and about seeing new things (so long as the people interactions are low). The good thing about new places is that you aren’t supposed to fit in and it doesn’t matter if people think you are strange because you don’t intend to stay.

So, I may be quiet for a while. I will update some time after my official diagnosis, depending on how long it takes me to process.

Religion

All my life I have felt that there is something that I just don’t get. I have always described it as feeling that I missed out on orientation day, which is why I always make sure I attend orientation days so that I do have that little bit of extra information they give. When I first started reading about high functioning autism I found a lot of people describe it as feeling they come from outer space. The first thought that jumped into my head when reading this? ‘I wonder if Ron L Hubbard was autistic’. A quick google didn’t give me any answers but I am still amused by the thought that many of the worlds powerful, famous and beautiful people may be following the beliefs of an autistic mind.

But this isn’t about Scientology, this is about me.

I have issues with most churches, those that don’t practice what they preach. The millionaire ministers asking for more. The pedophile priests preaching the sanctity of purity until united in holy wedlock. The Catholics buying forgiveness for sins they have every intention of repeating. I am not saying this applies to all churches but I have yet to find a religion without rot somewhere in the hierarchy.

My beliefs are somewhat more basic.

I believe in the universe, both in a scientific way and in that there are forces out there that we don’t understand that can influence our lives in ways we don’t know.

I believe in Karma. Sometimes I wish she would work a little faster but have to be satisfied that she will get there in the end and it isn’t my place to judge how hard someone else’s life is.

I believe in Mother Nature. Man as a race often thinks he can conquer and control her but every so often she sends a reminder that she is the one in charge.

I believe in the basic concepts of many religions. Treat others fairly, do good in thought and deed, do no harm, help others when you can (good old Karma comes in here too), treat the planet with respect (don’t shit where you eat is a pretty basic concept).

So, I may not believe in a god as such, but I will not say she/he/they does not exist. I believe there is something out there that influences us, both directly and indirectly. I don’t know if I believe in a heaven but I know it would be an awful pity if this was all there was and there were no second chances, no chance to look back with clarity to make sure you did okay, no chance to try again and learn some more.

The Questionnaires and a Bad Day

I have just done another three questionnaires as part of my path to diagnosis. I was told to answer the questions on how I am on a bad day. None of the questions covered what a bad day is for me. Can I tie my shoes – Yes, can I still do it on a bad day – yes. Same with holding a conversation, just on a bad day I may not want to talk to anyone or be interested in what they have to say or have the patience to be polite when these apply but I am still capable of doing it, the other party may not be pleased with me, but hey, they started it.

What is a bad day for me?

A bad day is when I can’t eat the foods I like, even though I may be hungry, because the taste or the texture of the food may be wrong even though they are no different.

A bad day is not being able to complete tasks because I can’t work out the logical sequence for the tasks to happen.

A bad day is not being able to complete even a simple task because of an issue or roadblock that I can’t get past.

I may not be able to get out of bed because I can’t work out a sequence for the subsequent tasks, ones as simple as cleaning my teeth and eating food. When push comes to shove I can get up to use the toilet but need to return to bed as soon as it is done because I can’t work out what to do if I don’t. Habit and routine will get me through the basics of toileting and washing my hands, but that’s about it.

A bad day can start good, I can wake up happy with a list of things I want to do. (I never wake up without some sort of list in my head) It can quickly go down hill. I may be able to sequence my events into a logical order. Something simple may disrupt things (no milk for breakfast) and the whole day day can become impossible. A good day I can have toast, a bad day I can’t get past the absence of milk, and even if I have everything I need for the subsequent task I can not move forward (you may be interested in my Ant posts here).

A bad day is not about tying shoes or constructing coherent sentences in context. If someone tells me to put my shoes on or to talk I could do it. A bad day is not being able to work out WHEN I should put my shoes on (which shoes is not an issue, I wear the same shoes every day, choosing the socks I want to wear can be a different story) or not being able to work out what I should say or who I should say it to or even if I want to say it in the first place.

Update: Diagnosis Progress

Yesterday was a two hour psychologist appointment to go through the questionnaires I had answered and to give further information as required. Today I am very fragile, it was expected. It usually happens after a session of analysing, especially of myself.

I have some more homework, another three questionnaires to complete by my next appointment in a weeks time.

This process is hard. I expected it to be but still wanted to proceed. I really hope the end result it worth it. I am beyond the stage where I could put myself back together and pretend it didn’t happen. I feel the layers of protection of many years trying to cope in the real world falling away in great big chunks. They can not be repaired, they would need to be replaced one layer at a time. I don’t have the time or the energy to do that again because I know those layers of protection also confine me.

Today I am exhausted. I wanted to write though, to log how I feel now, not how I thought I felt in a couple of days time, or how I think I should have felt. Today is one of the days when I could not survive out there. Today is one of the days I am scared of. I am scared that this will be my future without those layers of protection. At the moment I only have hope. I remember times when I felt happy, when I could embrace more of my weird and did not live in paralysis of what consequences may be.

Today I curl up with my small ball of hope, to rest, to let the vulnerable where my shell has fallen off grow used to being exposed.

This morning I told my husband I love him, I will always love him, but I don’t know what our future holds. That, if at any time, the way I become is too much to deal with that he is free to go. I will not hold it against him if I become too much and he needs to do what is right by himself. I hope to a god I don’t really believe in that it doesn’t come to that.

As more of the shell falls away, more of the learnt polite behaviours fall away, I become more of what I was born to be. My husband already notices that some of my social skills are failing. I do not always acknowledge or give the polite greetings or farewells. My mind has skipped and I am somewhere else, not with him at that time. I truly hope that when this is all done that some of those skills do come back, that I am not so much in self preservation that I don’t acknowledge those I truly care about in a way that is important to them.

The selfish thing is, as more of the social behaviours fall way, I feel my brain starting to work again. My thoughts are feeling freer, my memories sharper, my perception of facts clearer.

I find Autism to be such a paradox. To be one extreme or the other. I always blamed that on my star sign. I am a libran, the sign of balance, I always joked that I was the sign of seeking balance and never finding it. I was balanced, I was cocooned in inertia, lacquered in the behaviours of social expectations, unable to move and certainly not me, but I was balanced. If you don’t move there is no movement.

Now my layers of lacquer are falling off in chunks, my inertia was suffocating like a shark unable to swim so I move. The world sways and there is no balance. I know the road is rough.

Life is not about the destination, it is about the journey. I move again now, there will be more journey.

Wish me luck, I fear I will need it.

Rules

I like rules, they define the borders and give me safe spaces. The rules tell me what I can or can’t or should and shouldn’t do.

I don’t like rules when they are manifestly unfair, when they are not evenly applied or when people get to flaunt them with no consequences.

I can break rules. When I am happy to deal with the consequences. I know it is impossible to make simple rules that are fair to all, and complicated rules are still open to challenge and loopholes.

I hate having to bear the consequences of other people breaking the rules. I hate universal punishment for one offender. I will be responsible for my actions, I should not be responsible for theirs if they and the people who should be responsible will not take responsibility.

Not a Hypochondriac

Spending your whole life thinking something isn’t quite right with the way you function leads you to trying to work out what is wrong. Without chasing down doctors for a diagnosis when ever a possible solution has presented itself I have investigated it as an option. These have included:

Leukemia

The first time you hear about leukemia you hear that one of the most common signs is unexplained bruising. I have always had bruises that I haven’t known where they came from. It has gotten to the stage when I do bump myself I will tell the nearest person ‘If I get a bruise there and can’t remember where it came from, remind me about this’. I don’t always get a bruise from that and I still get unexplained ones. I ruled out leukemia quite quickly because when I first heard about it was years after I knew I had been having unexplained bruises and I figured if I did really have it I should be dead by now.

Manic Depressive

Some days I wake up and I accomplish amazing things. I am like the Energiser bunny and can just go and go. Other days I don’t want to wake up or I may not get out of bed. I can wake up in the middle of the night and the solutions to all of the problems in the world are so obvious to me. Or I can stare at a simple sentence for ages and not be able to make sense of it. I discounted manic depressive mostly because it was a label I didn’t want, and rightly or wrongly, I associate it with being self destructive. But sometime in moments of doubt, or on the hard days I would get a niggle that maybe I should look into it further, just so I could get a solution and be able to cope with more of my life.

PTSD

Apparently this one is quite common for autistic persons. My problem with it as a solution was that I could never work out what the T was. Then you hear that the T doesn’t have to be a single event but can be a series of events or a lived situation. Given I have been the way I am for as long as I remember that makes you start to doubt your childhood. I wont say my childhood was perfect. Given what I am learning about autism I believe my mother was undiagnosed. Given how hard I have found my life I can easily understand her issues on coping with hers. I don’t think I could cope with being the stay at home mum to four kids in a society that doesn’t believe women should have equal opportunities to men. Given all of the givens, I think my parents did an amazing job. To quote the poem my husband wrote me after my mum’s death when I was having trouble coming to terms:
Not everything she did was right
But not everything was wrong
But she always did her best
And your best is never wrong

I am sure that have been other passing worries of things that may have been wrong with me but autism is the one that truly fits. I am sure I have said it before, once I googled it and found information on autistic females, it was like someone had been following me around my whole life making notes. Only a few more weeks to the next step of my official diagnosis.

More on Ant Theory

A few months ago I mentioned Ants. How a train of thought can be like an ant trail, and if that train of thought gets interrupted it can cause the ants to run around and panic until they are back on track.

Since my husband and I started using Ant Theory we use ants a lot to describe how our thought processes are. If either of us has plans for what we want to do that day we may ask the other how their ants are, to see if what we want to do conflicts with what they want to do and then we can reorganise our ants before we start.

We have also discovered we have different ants on different days. Some days they may be marching – single minded and heading in one direction. Some days they may be seething – running all over the place, biting anything they can get their teeth into. The good days they are strolling, or free range – no specific purpose, just moving gently. There are many moods to ants.

While the ants represent my thought processes, my thought processes are not me, and I am not my thought processes. I can wake up in a good mood but still have marching ants. If I let my ants march to where they need to be I can still have a good day. If my marching ants are blocked they can very easily turn into seething ants and then it is not a good day. Even the gentle strolling or free range ants can end up seething if the ant hill gets kicked enough. The trick is to work out what your ants need to do to be happy, and where possible let them do that.

I am not sure if I am an ant farmer or a CEO of an ant organisation. Whichever one I am I don’t get to pick how my ants are, I only get to pick how I deal with them. It is easiest if I can let them do what they need to do, and if they are seething, I need to take them away from potential negative inputs (mostly other people) until they can calm down and become productive little beasties again.

Having a Cat Day

Do you ever feel that you are a cat, and the rest of the world is charged with static electricity. Just a constant feeling of discomfort like when your hair is standing on end, and every time you you have to interact with reality it makes you want to hiss and spit. No matter what side of the door you are on, you want to be on the other side.

Welcome to my Sunday.

My positive visualisation which can help a little is walking on path by a stream edge, listening to the water, the birds, and the sounds of the bush. Only very distance noises of humanity if there are any at all. I would love to make the visualisation a reality to truly calm my soul, but with the current restrictions I don’t think a quiet walk in the bush counts as essential travel.

I wonder if those nature sound tracks might help, but when ever I have heard them in shops they sound so fake and out of context. I need the other sensory input too, the smell of fresh air, the feel of the breeze and the sun. The feel of the shade under the trees, the damp earth. Things rustling in the undergrowth.

I imagine a cabin I can return to after my walk. There is a wood fire, I could smell the smoke as I returned. The people who aren’t there have made a meal for me and restocked the wood box. I can relax for the rest of the day, enjoy the sounds and the feel of the surroundings. Maybe read a book. Spend the night snuggled deep in the bed, the magic of the fire means it doesn’t go out even if I don’t get up through the night to add wood. In the morning I can pack up my things and return to the real world but today I think I need to pretend it isn’t there.

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.

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