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





*where to from here…

Paul’s Boutique – brain candy

Anyone who knows me relatively well knows I have a deep love for hip hop. One of my favourite bands is The Beastie Boys. I think their stand out album that pushed boundaries and opened up hip hop to more than slow moving rhymes is Paul’s Boutique.

The album cover gives no indication of the joy contained inside. It is bland, late 80s picture of a street corner in Brooklyn. A bit of investigation would enlighten me as to the significance of the boutique, but I don’t give a rat’s arse really. I’m not here for the minutae of trivial detail. I’m here for the Snoezelen bliss the album brings. So, don’t judge musical genius by it’s cover.

In short, Paul’s Boutique (PB) is a beautifully timed blend of the usual wise crack lyrical lad bondage the Boys bring to all their songs and some of the smoothest funk tunes ever produced. Whereas Ill Communication has wicked bass beats running throughout, PB has an almost late 70s porn vibe. The bass lines are heavy and quick, and the guitar riffs belong squarely in the mid 80s soaring of the pop metal bands ruling the US music scene. I am constantly wondering what Jimi Hendrix would make of the album.

It is squeaky clean with its editing. Not a note is out of place and the rumbling style is brushed up with such precision, adding a razor edge style to the loungey hash scene evoked. I think it is the coming together of so many styles that makes this album the ultimate auditory heaven for me.

There are times during my years when I tried a number of experiences that are purported to give artifical highs. Alcohol, sex, drugs, food etc. I have since discovered I can have natural highs from certain things. Listening to Paul’s Boutique is one such way. It brings me to a place no drug has ever taken me. Even listening to PB’s ON drugs brought me no higher. I enter the music, especially from track 10 onwards, and flow with it effortlessly. The only other song to have the same effect is Heroin by Velvet Underground. In that, Lou Reed masterfully brings us along, musically, on a heroin rush. Which also equals an orgasm to him too. I suppose Heroin is a symbolist stand in for both. But in PB, I am brought along to a drug fest, yet I am not asked to imbibe anything. There’s no need to.

If these Boys were straight as during the production of this album, then they must be lauded as geniuses. I probably need to investigate their production team, for the whole album is sheer perfection. It is of the times, transcends the time of its production and is the penultimate album for a group of Jewish boys who dared to take on the might of East Coast and Chicago hip hop.

Seriously, who else can make a song like Eggman and have it turned into musical perfection?! They take the piss out of themselves and rarely take themselves too serious. Just look at any video clip for the songs on Hello Nasty.

They did, however, propel themselves from PB into an experimental instrumental period, but with little acclaim in terms of record sales. Then came the flippant and fun Hello Nasty. Even that sort of signalled the end of The Beastie Boys as a force. This time was shifting to Eminem and harsher forms of rap.

So, Paul’s Boutique is a high point for The Beastie Boys and will always be their most musically perfect and highly acclaimed album. Best fucking high ever.

The Gulag Archipelago

I am rereading The Gulag Archipelago by Solzhenitsyn (AS from now on). I first read it about 25 years ago. I have an old copy from the early 70s that I cherish. I have both volumes. I can’t remember where I purchased them, but they were $2 each. I had already read Cancer Ward and A Day in the Life of Ivan Denisovich, so was familiar with AS’s work. Even in translation, his voice is uniquely speech like, in that I can imagine him speaking, naturally, the way he writes.

The topic is quite sombre and it is a macabre read. The opening is about the normalcy of arrest. During the Gulag years, arrest became such an ordinary occurance. People rarely objected to the arrest and some even came to welcome the eventuation of it. That alone is enough to warn the reader of what is to come.

On page two, there are three very disturbing photographs. One of AS in the early army days, one during his detention and the last of his release from camp. He becomes a shell; literally. The passion for submitting his experiences to paper for all to read is evident in the photo of him on the cover, many years later. A man who clearly has lived through hell on earth. It is hard to see the photo of the man on the cover was the young man in the army.

It is through reading things like this I remember to be grateful. Life gets hard, but I am not condemned to an arrest, judgement without trial and an unknown amount of time spent in a Gulag. It boggles my mind that for a good 40 plus years, Russia had a string of these camps and prisons everywhere. Train stations had GPU offices and prison cells! AS lived through this!

This, alongside Viktor Frankl’s Man’s Search For Meaning, are books that help ground me. I understand we live through some incredibly surreal events; things that are designed to kill us, or suppress our will to live, at the very least. Yet we can, and do, go on to live beyond all this.

What makes me feel ill is that there are probably modern tragedies going on all around us, and I am none the wiser. Am I part of a national shame that I will learn the extent of in the distant future? A whole nation, already ravaged by eons of serfdom, years of being dragged into Tsarist war projects and severe winters during the Revolution era, then had to face the daily fear of an unpredictable Stalin. So much that Russia had to face in the 20th century, and here they are, now free(ish) to learn about the likes of AS, and most probably family members.

Yet, the Russians carry on.

Learning styles

We each learn differently. I guess that is obvious. But even within disciplines, our learning styles can drastically change and our learning needs do a 180.

When it comes to social sciences and humanities, reading hard copy books is my thing. I prefer to pick up a book and read to get the most effective learning. I can go back over sections, take my time and the words hit my brain in the shortest route.

With mechanical work, I need the theory spoken out and then visuals, preferably in 3D, to show the theory in real life. Then I like to watch a person do something, which I will then copy. Over time and much practice, I then adapt it to my own way. It is only then I can find ways to explain what I am doing, and why. With academic subjects, I readily translate and transmit what I learn after a reading.

With history, I respond best to TV shows. I can sit and listen to just the words sans visuals and get more out of it. It is like each discipline has one sense I learn best via.

I’ve learned a lot about the various liquids and solids at work using smell. Some need to taste the oil or touch the metal to gauge its properties. I can tell a lot simply by smelling an oil.

I wish I knew how best to explain my learning style to my boss. It seems to irk him, and my co-workers, that I learn differently. In the mean time, I’ll eek my way through. Somehow.

Corporatisation of socio-cultural identity.

That is, a fancy way of saying we are pushed into a mould of acceptability.

Lately, I’ve been thinking about times when I was pushed into being acceptable. Instances of what I mean:

* My year 12 talent show. I was to sing a Roxette song solo as a task to myself to prove I can hold a tune and face my fears of singing aloud. 15 min before I go on stage, I was told Kylie would be joining me as back up vocals. No. She was there to sing over me. I was that bad. I knew nothing of this.

* I wrote a report for a UWA magazine after I won a travel grant of a few $K. My report was rewritten to look much more professional. My initial report was deemed immature and naive by my department.

* I went to a blingified Italian-Greek wedding with my Italian ex. My outfit was appraised by potential mother-in-law who promptly screwed up her nose and gave me new clothes and jewellery I found hideous. I got changed into my original things when we arrived. Ha!

* My report to the Royal Inquiry into Family Violence in Aboriginal Communities was rewritten by the lead researcher. I had not skewered it the ‘right’ way. Years later, I understand the political ramifications of presenting things in a particular manner, but still…let me learn! It was my first work as a consultant freelancer.

* I worked on an ad for Office Works in late 2014. I did a 2 second cameo, for which I got paid more, but it has never surfaced. I seemed like the office worker next door, but lacked presence in the final cut. That was the feedback. Ok…

* I applied for an ASIO intelligence agent job. Got so far, only to fail the interview because I looked wrong. My clothes were not professional enough. I didn’t make eye contact. For fuck’s sake. Like I wanted to be around such homogenous suit wearers?! I was curious to see how I’d go.

* I’ve never been asked to do any more token female media stunts for work since the first one. Guess I am not photogenic enough. I don’t play the game. I tried in a promo video for VACC and was caught out pretending to be the model employee. I don’t give what they want. They have plenty of 20 yo blondes in light vehicle to do that now.

It is happening to D too. His work was not on display at a recent High Achiever’s presentation night. His projects are all hand drawn and don’t use advanced graphic design programs some of the more worldly kids use in his class. D scores points for ingenuity and effort, but he’ll never have his work paraded as an example of how the HA program excels. It killed me to see him at that night. He felt completely defunct and down. I understood why he was left out. I understood his feelings so well. This won’t be the end of it.

Unless an autistic person has a savant skill, no one really wants anything to do with us. We bring no glory, no accolades. And the ones we get are considered undeserved.

I have received a National Emergency Medal for my efforts on Black Saturday with the local fire brigade. Plenty were upset I was included. Apparently I did nothing.

My travel grant should have gone to a more useful topic than mine. I agree, but my application WAS rock solid. So, there.

My article for a fitness magazine was included simply as payment for a fucking shit load of editing work I did for free. Over many months. It wasn’t merit based and it was token placed at page 118 of 130. I learned a big lesson from that.

So, D may not ever be part of the corporate image. It isn’t that bad. Better than token attempts of inclusion and reward.

Poor H won a second prize for a marvellous poem he wrote in 30 min on black holes. Sadly, his entry was the only one checked for plagarism and sent off to check the details were correct. It was verified by a Monash professor as factually correct. The teacher explained all this in front of the junior school and parents. It was mortifying. Then she said she will send it to Hawking. She hasn’t. H spotted her crap and screwed the award in the bin. He did it out of love for astro physics.

I will no longer play the game. It stops here. I do what I do out of moral correctness, my ethical standard and duty. Nothing else. I recognise I am not bound for glory on anyone else’s terms.

Strangely, I am nominated for Apprentice of the Year by my Tafe teachers. Their rationale is that I keep going when the tough times come. It has not been an easy transition to apprenticeship. I could easily have walked away. It is a daily struggle to stay at it. I see no future where it will pay off, but I made a promise to myself to stay. Whatever comes of it, I know I did it to prove to the world that the woman least likely can … and did.

The only one to know it is me. That is perfectly ok. That is the best lesson I can teach my boys.

The difference between your autistic child and me and my boys.

I really dislike the labels of low and high functioning autism. It assumes one form is worse than another, or that high functioning is better off. I know mothers with low functioning boys look at me with total disbelief when I tell them I am autistic. Yeah, I know, I seem so … normal, right??

And I guess my boys and I are. BUT I have worked my fucking arse off to be upper working class folk. Things could have gone much worse for us all. I was fortunate enough to have been born to a middle class mother who grew up in a very respectable family and learned how to emulate the last vestiges of White Australian, Victorian English ways. Had I been born in this era to a neurotypical mother, I’d be sent off to speech therapists, psychologists, occupation therapists and the like. Lucky me.

I was always terrified of being shipped off to a place for the mentally ill or handicapped. I knew it really was where I belonged. I learned above and beyond all that I had to learn to be like others to survive.

My grandmother (maternal) had electro shock therapy and was a heavy drinker. She was constantly in and out of Kew Cottages when my mum was a teen. But she always put on a the fake mask to the public. Only grandma’s family knew she was a problem.

But grandma wasn’t a problem. She was very most likely autistic. All signs point to it. And the fact I remind my mother of grandma tends to lend credence to my theory. So, grandma taught her autistic daughter how to function. Sort of.

See, just because I have taught myself to speak and pushed myself to defy the odds placed on people JUST LIKE ME, doesn’t mean that another autistic child with hefty deficits cannot find ways to adapt. But here’s the issue: do you really want your child to fake their way and become exhausted, open to abuse and ridicule, and constantly feel the need to perform to be half way acceptable? Some do. And it breaks my heart. I did it with my boys and I see the fire in their eyes dull with each passing day.

Ok, so I can fake my way each day, mostly, does that mean you can stand there with disbelief that I am so far different from your son, who is running around erratically and talking to strangers? You never knew me at 4yo. You never met H at 3yo. And you sure as heck never knew D at 3yo!!!

I still have days when I am not sure H will ever develop the skills to live alone. I am not sure I can live alone, as much as I want to. I can see D working himself to exhaustion to do well at school AND fit in enough so you don’t think he is autistic.

Sorry, but I am autistic. So is your son, and my sons. I can assure you that because we are labelled high functioning doesn’t mean we get off scott free. It generally means we have undue pressure to become like Norm and his mates. Our autistic traits raise eye brows, get us into trouble for anti social behaviour, because we ought to know better.

No autism is a walk in the park. I spent many years of my youth and an episode just 4 years ago where I attempted suicide. Swallowed 200 white pills and drank litres of alcohol. Each time, I was found and either induced to stop (usually held down by a heavier male or hit so badly I was incapable of lifting my arms to my head) or rushed to hospital and had charcoal forced down my throat. I had to be subdued many times with mild tranquilisers.

Simply because being me was too painful. Being high functioning, in some eyes, is easier. I envy little boys who spend a lot of their time retreating into their inner worlds. No one expects much of them, except to snap out of it and become like me. Because being able to say “I love you, mum” is what so many mothers hope for. It ISN’T authentic.

If I confide in you that I am autistic, know that I have faced as many struggles as your little boy will come to face. They may not be the same struggles per se, but autism has many aspects to it. Your son might be gregarious, but unable to speak. I can speak but social situations are the most painful thing to me. Your son might not sit well in a traditional class room. Neither could H. He either fell asleep or acted out animals to everyone’s amusement and annoyance. Your son might not ever look at you – in a proper deep look into your eyes. Neither has D. And probably never will.

I’m ok with it. You may not be. Therein lies the BIGGEST difference between high and low functioning. It isn’t the degree of severity, but how WE handle and view it. And the outcomes we seek. I took my boys’ autistic wonderland away from them to help them mask their difficulties. I wasted all my years and energy on trying to be one of them. So I can stand in front of you and see you shake your head that I could be just like your low functioning son.

How do I get you to understand?

You tell me to not feel that way; to not react that way. You get annoyed at me for doing the wrong thing; for saying the wrong thing. You find me boring; you feel I have nothing to give. I no longer know what do say, do or be to get you to understand.

I wear the mask, but it slips. I laugh at the right times, but some days I remain poker faced. I find the energy to be like you, but then I tire and become child like. I forego things of interest to me to keep the conversation where you like it, but then I forget and ask if you’ve seen the Warhol exhibition. Hoping you might know who he is.

You don’t.

You don’t live inside my brain. You don’t see the empty shell at the end of the day. You don’t know what I have to go through to start tomorrow off like you. I’m feeling comatose, I can’t talk and I crawl inside myself.

Maybe tomorrow you will understand.


I hadn’t realised how anxious I can be. It took quite a few years and some kind/not so kind folk tell me that I was behaving in weird ways to understand anxiety has been with me all my life. I thought it happened to other people… so, me too??

I keep my symptoms under wraps as much as I can. Occassionally, it gets the bettet of me and I become worried, angry, short of temper, heart beat gets rapid, overwhelmed and begin to crash. I suppose it is hard to know whether I’m angry and anxious, from your perspective.

I do not choose to be like this. I’d give anything to be rid of it.