Communication

I can write. I can speak. Apparently that qualifies me as not being disabled by nearly all who now know I have autism. It is not the end of the story.

I can write much more effectively than I can verbally communicate. I will agree that, on appearances, I am fluent in written form. Sort of. It has taken years of practice, thousands of books having been read, a nearly completed PhD to be where I am. No one has witnessed the redrafting I’ve had to do, the raised eye brows of teachers asking what my work even means, the learning of basic grammar and punctuation at an older age because I mived schools so often.

I had a brilliant vocabulary at a very early age, and I read Charlie and the Chocolate Factory at 4yo. BUT I have lacked the social and emotional skills to understand what I am reading. Teachers assumed I was gifted, or very stupid based on this reading ability alone.

As for speaking, yes, I am verbal. I can use big words. I can construct a complete sentence with nouns, verbs and adjectives. But it does not mean I can transmit what is in my mind to anything remotely intelligible to you. You will hear my words, but it takes a while to get the right meaning set. Even then, I need to be fully rested, nutritionally right, clear of mind and emotionally flat. Otherwise, I tend to slur words, use only those pre-mixed sentences I know will work and have tried before, or I become mute.

My muteness is only an issue for my mother. She hates it. She still does not accept, let alone understand, why this would be my default setting. I often resent having to speak. It is a pale, inefficient way for me to deal with others. I can’t wait for mind reading humans to evolve. That will open up the most phenomenal worlds to me.

In my mind, I can speak any language I choose. I conduct the most exquisite orchestral pieces. Andy Warhol and I are best buddies. I am light years beyond Kurt Cobain’s angsty lyrics. Kirkegaard’s masterpiece is being added to by my mind. I. Just. Cannot. Get. It. Out. And it kills me. You hear and see only a minute amount of what swirls inside me. You cannot sense the universe that exists within. And I come across as a multitude of things to different people. Mostly derogatory or slightly demeaning.

I am not trying to big note myself. I am letting you know that while I appear very able, I am in fact crippled with communication issues. After reading this, I don’t blame you for judging me as a liar. I can be free here. I cannot be free when I respond to others’ blog posts, write essays, write notes to teachers, compose emails etc. I set my own agenda here and I can enter my zone, my way. This is the only time I can get any nuggets of written gold out. My only constraint is politeness. And that social expectation is a blog post on its own.

There are other forms of communicating. Creativity. I have no ability but to mimic. I have so many ideas for painting and drawing but it gets overwhelming. It is like a billion souls trying to exit a rotating door at a bank all at once. Mental danger ensues. Mimicing is safe. I can focus on what I am doing with no fear of drowning in my ideas. Sounds weird to write this, but it how it feels.

Music. Requires skill. I have an eye-hand/body part coordination difficulty. If I concentrate with all my might, I can persist at playing an instrument, or typing, mechanical work, or body building. Just not hand writing. So music speaks from my soul, but my body wants no part of it.

I have learned that I learn new skills by mimicing others. This is for the art of communication too. I used to speak like others when I was younger. I never knew why I did it; obvious now. I learned Indonesian by spending a year copying others’ words, intonation and speed. All Indonedians I meet know I’ve lived on Lombok; my accent gives it away. I copied the writing style of May Gibbs, Charles Dickens, others. Nothing original. Even now, most of my verbal communication with my sons is echolia based.

If I have to explain things when I am tired, on a new topic, compose something original or be a ‘friend’, I fall apart. I become mentally anguished and confused. I either repeat well rehearsed responses, copy what others have said or shut down. Oh, and anything emotional is a no-go, verbally and written.

No one lives inside my head with me. I sense when others have an immensely rich soul, but insufficient means to communicate that richness, the complex divinity within. I intuitively understand their angst they hold in their bodies and souls. I sense what is in their heads. And it is then I know I’ve met a kindred, communication challenged soul.

 

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How did I not know I am autistic?

I’m not sure one knows one is anything until another either tells one that s/he is something, or reflects back a mirror image of one’s self. Still, in any case, there need be a reference point or criteria that set the parameters by which one is judged.

When I was young, autism was basically another, less common, word for retarded or spastic. Growing up in rural Australia, I rarely met people with these labels. On the very rare occassion I did, it was always in hospital settings, and I really had no understanding these people were less-than. To me, they were just another person. Usually loads more interesting.

I learned to hide ANY sort of behaviour that raised any eyebrows, attracted comments of my being anything but the perfect girl, or brought another’s anger or displeasure. I am not sure when that began, but I strongly suspect it was the time my step father joined my mother. All my bossy, adamant behaviours suddenly left. Along with my voice and desire to be near people. That makes me 2.5 years old. I was on the good girl path by kindergarten.

People’s anger and violence in response to me being me  is what has really made me question myself continuously. If I have always strived to do the right thing, be the perfect good girl, then why would people respond to me with angry words, expressions and fists? I never knew why I’d bring such horridness to people I liked.

I lacked a mirror or a trusted, honest and caring soul to explain how I am different. I knew I was from another planet, but why be so violent to me? I sought a reason for all my differences from the age of 16. That is over 25 yrs of searching. Psychiatrists, psychologists, social workers, doctors, counsellors, nurses, friends, traching staff…no one could give me any reason I could understand or feel was me.

Depressed, multiple personality disorder, anorexic, altruistic, suicidal, anti social, neurotic, drug user, addict (of what??), gifted, overly analytical, perfectionist. All these labels are SYMPTOMS, not diagnoses. I acted on cue is what my first psychiatrist said of me, but he had no idea why.

I knew I did weird things. I still do. But nothing to ever harm anyone else. I lost nearly every single friend, but two. I burn every single bridge I cross.

Autism was something that is what I now know as classic; meaning I didn’t have it. I had NO idea it was a spectrum. And that the core of my being put me firmly on it. My attempts at  being a generic good girl fixed me, right?? The fact I kept stumbling through life, having periodic nervous breakdowns meant I was broken, but what on earth did they have to do with autism for this righteous woman?!

My final mirror came when I had to admit my eldest was facing issues at school. If he was having similar social/emotional issues as me, DESPITE him never being abused and growing up in a stable, well loved home, that meant there was a common denominator. Autism was explored with an open mind. Erm. Yes. Well. If my eldest is autistic…then so am I.

I still pinch myself to see if I am real. And that I really am autistic. It is a difficult term, and self concept, to accept. I can either see myself as normal/neurotypical, and accept people were/are angry and displeased with me, OR cope with being autistic and accept people were/are angry and displeased with me because they naively expect me to be a normal woman. We both know which allows us all some breathing space! I can stand with pride with all those people I took as normal, yet maligned by others, as I, too, am flawed by no fault of my own.

I guess that makes me more interesting too.

Autism really does suck some days

Today was meltdown day. Then shut down. All in the space of a few hours, actually, so rightly it should be meltdown arvo. Nevertheless, today has been hard, and work mates knew it.

I am an apprentice truck mechanic. Yeah, I know. I’m middle aged, single mum, completely inexperienced, mild haemophiliac, female and autistic. The holy number of ‘things against me’, I guess. Let’s not go into why I decided to do this; that is another post. I did silently ask myself repeatedly why I am doing this many times after lunch.

My energy is at a low. The hot days, new poly-cotton work shirts, overalls and rush pace has left me at 5% of energy. I went into the red after lunch. Then I got asked to return to a job to finish off small things I hadn’t noticed during the service. One of those was to grease a rose joint under the cabin of a Kenworth. For you lay persons, that means contorting myself into a small space with a grease gun to give a tine squirt of grease to an area the size of a 20c piece. Not fun. It requires coordination. Which I donot have unless I am at 50% energy. I began to cry in frustration.

I don’t let the 25 odd men see me cry. I spill out on days like today, and they just assume I’m a cranky menopausal woman. That suits me. But I nearly let it destroy me today. It overwhelmed me. A supervisor helped me out and the job got done. A happy customer and a frazzled, fragile me, lying on the floor of the ladies’ loo crying my heart out.

I never cry. Ok…rarely. It takes a lot to reduce me to tears. I can count on two hands the number of times tears have fallen. Just never in front of people. I’d rather eat worms than let anyone see me with tears. I don’t know why.

I truly tried to contain it all within, but it got too much. The job got out of my control due to my lack of experience. I don’t like that. And time constraints on jobs forces me to work at a pace that I cannot maintain without cutting corners, which I will not do.

My job is central to who I am. I fix things that have no emotions, are governed by logic and keep people providing for their own families. I love what I do. I just don’t love my lack of coordination (propriocentrism issues affecting eye-hand coordination), my need to understand a job before I can just do as I am told, and my inability to control my energy and emotions.

Back to the cranky woman identity. I can no longer hide my quirks/disabilities. I have told a manager and a supervisor about my diagnosis. They are curious, but accepting. They cut me no slack, which I approve of, yet I know they are quietly supportive of me, as I am keen to do my job well. They just don’t quite get how my autism affects me. I think they kind of forget I have it. I can no longer hide behind the cranky woman. I drop tools, have mood changes and do not respond well to people pointing out my ample imperfections. I also HATE it when people assume I am not trying hard enough.

Let me tell you – I AM trying super hard. I have to eat well, assure myself a decent 8 hrs sleep, be coordinated, upbeat and physically fit to do the job to the same capacity as the testosterone filled mid 20yo men with no children. It may sound like excuses, but I am literally selling my soul to the gods to do my job to the very, continual, best of MY ability; which translates to a normal day for these guys. It is hard work; physically and mentally. So much has to be remembered and skills transfered. Being a truck mechanic is not for the hyper energetic dumb boys of yr 10, like the stereotype has lead us to believe!

I come home mute most nights. My eldest looks at me and wonders why working for a wage is worth what I appear to be giving. He sees it as a very unfair exchange and he is not very keen to work in such a system. I get it. Alas, this job fulfils a lot within me. The challenges, the ever expanding repertoire of skills I am gaining and I get to work on very cool vehicles.

My disabilities cause silent and invisible problems to me. I hide them at work to not let them affect my work. I carry the frustration, anger and clumsiness home with me. Unleashed away from my boys. I tried to justify my issues in so many ways prior to diagnosis. I am just klutzy, I am more a brain than a labourer, mechanical work is so sub par, I cannot learn to write neatly, men are just a**holes to work with…it has all been me. That is a hard pill to swallow. All…me. That sucks. And all I can do is admit it and stay working at my deficits in the hope they will slowly improve. And try not to melt down at work.

I sincerely wish I had a go-to person; a friend, I think they are called. To hash out the emotion, to make sense of it all. To help calm me quickly, so I can stay at my job in a constantly calm manner. I know I can be a pretty darn good mechanic, but a few tweaks to how I am handled would help.

How on earth do I explain autism to a bunch of young men who don’t even know who they are yet? Without me being pugeon holed as incompetent or asking for slack? It is obvious I cannot continue as I have because it has not served me well in the past. I do not want to lose my job. Other than my boys, it is my soul. Yes, ok…part of me. A huge part.

Autusm just sucks on days like today. I wish I wasn’t me. Messy, slow, unco and an emotional ship in a stormy sea. No amount of crying, logic or kindness will change a thing. But working towards listening to me will.

Greetings and the gist of why I’m here

Hello there. Very nice of you to pop by. May this be the first of many visits you make to my new blog.

August last year I was diagnosed with autism (ASD level one, to be precise). It came as a shock, I must admit. To be a somewhat self assured 42 year old woman, and finding out one is not what one thinks one is…or who one is. The hardest part is fianally laying down the hope I’ll ever be ‘normal’. Yes, I know you are keen to delve immediately into the semantics of normal. I’ll get to all that later. Right now, I am setting the scene as to why you might bother to read my blog.

There is a lot I have to get off my chest, confess, complain about and express. Most of my posts will be autism related, but I may need to discuss haemophilia, perfumes and the occassional deep topic. I will try to be as coherent as possible, but I warn you that I do have some communication difficulties. I may wander off, or I may just allow emotion to drive my words.

I am a mothe

Hello and an introduction

This is the post excerpt.

Thank you for coming by. I am a middle aged woman and I was diagnosed with ASD level 1 about 6 months ago. I have two children I shall refer to as H and D, both boys. H is on the spectrum and D is about to be assessed. I hail from The Land Down Under and I consider myself a jack of too many trades, and a master of absolutely none.

This blog is about me making sense of autism and untangling my messy life to get to a point where I can move forward more confidently. I sure don’t want another 40 something years like the ones I’ve had. Something has to give, and sadly, it is my beliefs, understandings and notions I’ve had of myself. When I turn to face my past, all I see is a lifelong series of faux pas, burning of bridges and serious social gaffes.

There is another medical/genetic issue my small family contends with – haemophilia. I am a mild symptomatic carrier and D is a severe haemophiliac. It is important I mention this because a lot of our antithesis approach to it is certainly coloured by our autism. You’ll see what I mean as I post more.

I’ve called this “kaption this” because I’d like you to make up your mind and bring your own ideas to my posts, and it is a play on names. An inside joke, sorry.

At times, my words may be out of synch and ideas all over the place. I am not very patient with editing, but I will endeavour to proof my posts for ease of flow, coherence, typos and to gauge my emotions to it. I may write, but delete it all. I’ll see. I’ll try to be more forthcoming than my emotions allow. Communication is one of my biggest issues when it pertains to my engaging with others.

Snapshot of issues I intend to discuss:

*face blindness

*difficulties in understanding emotions

*communication – written and my regular non verbal state

*physical clumsiness

*depression

*friendships/relationships

*childhood

*diagnosis

*where to from here…