An Incredible Lightness in Being

So, yesterday I got my official results. It gave me a great sense of peace. The report was factual. I could not disagree with anything it stated. This morning I woke up happy. It is corny, but today is the first day of the rest of my life. And it is MY life again. I am autistic, and if people have a problem with that then it is their problem, not mine.

So, to telling the family

My sister was just an update. She did my family questionnaire, so she knew what was going on. Older brother was cool, he had suspected he might be for a while but hadn’t done anything about finding more information. Guess what he has been up to today? Younger brother seemed indifferent, as in ‘Why are you telling me this?’. Dad was fine, but as he is somewhat deaf and I had to tell him by phone I had the joy of the info being relayed through my step-mother – “When did you get autism? I thought that was only something kids got”. She is nothing like my mother was, but Mum was autistic too, we just didn’t know it. My daughter was fine. She got her diagnosis earlier this year after I told her I was going for one.

My husband has read my report. There have been questions to aid understanding. How could I tell someone I barely knew so many details that he barely knew about me? (Not an accusation, just a request for information) If I could not lay myself bare before this person I would never know the truth. I had to trust my psychologist, if I could not, I could not be diagnosed properly. I have never lied to my husband, there are just some truths that are too big or too personal to share out of context, and if context never arose they were not secrets, just not yet shared. He is still processing everything and now understands why I needed to shut down after my diagnosis sessions.

My daughter’s actual response when I messaged her my results was ‘Woo?’. She gets it. She was diagnosed as level 1, venturing into level 2 when stressed or tired. My diagnosis, Asperger’s in the old terminology, level 2 with high levels of masking in the new terminology.

So yes, I am autistic and I am happy about it. And now, the true journey begins.

A Little Bit Manic

So, tomorrow is D day. I get my official diagnosis. Just to add a little fun to the mix, my job provider also decided tomorrow is the perfect day for my JobSeeker appointment. Luckily (I think) my Jobseeker appointment is in the morning and the diagnosis one in the afternoon. I wont be able to wave a piece of paper at my job provider and say ‘See, I really am autistic’ but I will be able to process my diagnosis at my own pace and wont have to pretend to be able to function while I do this.

So, to cope with this double stress day tomorrow, my brain has decided that today is the perfect day to do EVERYTHING. I have warned my husband and he has wisely decided to vacate the house for several hours. I figure I am best off just riding it out and crashing later today. Hopefully I will be physically exhausted and sleep well tonight.

So why am I writing today? Well, my brain has decided that this is some of the everything that needs to be done, and the grass is still too damp to do the edges and mow. I have already done the washing and the vacuuming and am trying to pace myself just a little bit to get as much bang for my manic buck as I can.

My brain is absolutely fizzing today. I needed to double check the spelling of manic. I didn’t think it had two n’s but needed to be sure. Google search threw up suggestions based on my typing and right under manic was manicure. My brain immediately started to wonder if indeed, would getting my nails done calm my mood today. Given I had to bounce while hugging my husband goodbye this morning, I sincerely doubt it.

I think I have said all I need to say today. My brain says I have and I must move on to the next task IMMEDIATELY.

Wish me luck for tomorrow. Actually, I may need it to survive today.

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.

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