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…

It might be time to advocate and create awareness. Maybe.

I think I need to go public. At work at least. I simply cannot allow co-workers to assume I am incompetent and/or stupid, and a waste of company money.

The problem is, the mentality of many is that I’ll be seeking ‘special treatment’. Yeah, I know… I’ve had that said. In the heat of the moment, I cannot think clearly and articulate a response. So I have to allow myself a calm time to address this preconception of me in a way that respectfully educates my co-workers, yet allows me space to be me. The only way I know how is to create awareness.

I have no idea how to approach the ‘special treatment’ issue. I know I am sick of being lectured like a three year old, being yelled at ‘like the boys’ (seriously, yelling at staff, regardless of gender or neurology, for a mistake works, does it??) and being treated with kid gloves. None of these tactics work to address my very real disabilities. Having disabilities and alerting others to them for context is asking for ‘special treatment’.

I make mistakes. B makes mistakes. M, our manager, makes mistakes. General Managers make mistakes. It is a real aspect of being human. But my mistakes are basic ones that others feel should not be made. Only stupid first years make those mistakes. And yelling at me will stop those mistakes.

How will this trade attract a diverse skill set and loyal employees with this old school, Alpha male mentality? I love the raw openness of the culture, and the mateship that comes with it. But I do not like the very narrow expectation of what a mechanic should be. It is killing my desire to be at work. I am surviving, not thriving.

I do not have solutions. I am going to have to trial solutions, to see what works. To begin with, I have to out on a ledge to voice who it is I am and what I am about. It isn’t all about me. I know that we have at least 4 other autistic workers in our department. They have no inkling they are, but the signs are writ large. They are the loyal workers who trudge on quietly. The unseen, the troubled ones who don’t fit in. I want them to begin to breathe and enjoy being at work.

The seed is planted. I have to let it grow a little. When the time is right and I am sure I can cope with the possibility of fall out (losing my job), I’ll calmly present some context.

Kudos to those pioneers who forge forward for us to walk in greater safety. I cannot imagine the courage and faith they have.

Struggles at work and in life. Am I THAT bad?!

I sincerely don’t understand some things. Namely, psychologists and friends (the few I have) tell me to be proud of who I am; to be myself and be ok with that. But the world constantly reminds me of how stupid I am, how grateful I should be with scraps, that I am not worth being around, that I am weird yet nice, I am boring, I am … yeah ok.

Then there are the ‘challenges’ life sends me; in the form of events and people. But don’t only horrible, nasty people get punished for being bad? How come I am punished?

That means I am a bad person. Yet a few tell me I am an ok person. I don’t get it…just what am I? Who am I?

I struggle to coordinate my eyes and hands. I have slow reflexes. I am non verbal for as much time as I can get. I hate small talk. I hate boring topics. I hate belittling others. I love the underdogs of the world. I have lazy muscles and naturally poor muscle tone. I connect dots where others see nothing. I live in my head. I don’t make eye contact. I am not feminine. I am not pretty. I am clumsy and klutzy. I don’t understand social conventions. I don’t seek out friends unless I actually want to see them. I make weird faces in between my resting bitch face. I never know where my limbs are in relation to space. I sense I am not wanted by humans. I feel I have nothing to give. I care too much.

I remember the scene in Ben Hur when Ben Hur was chained to a Roman boat; a slave oarsman. He looked half dead, spiritually gone. Doing the same movement over and over, to the beat of the drummer. Ben Hur was eventually set free and showed mercy to his captor. This is how I feel daily. Required to be what others deem ok, attractive, sensible, smart, acceptable. I’m not. I’m treated like I’m dirt because my difference is evident to some. Yet largely invisible at the same time. I’m the weak one to beat and take frustration and anger out at. I still don’t know why. The ONLY reason is that I’m bad, wrong, not right.

I work, not for fame or fortune, but to be of use. I love feeling like I’ve helped. And to feel safe in my work place. I don’t sense that at work. I feel growing hostility.

The same goes for life. My glow for living is gone. Now my boys are older, I see no point to living. I have no fight left. No goals ahead of me. Each day is dragging my feet forward…I have no idea why.

It has been a while…

Hello out there. If anyone is still around. I’ve been AWOL because I need down time and I needed a serious amount of comprehension time. I’m not sure I know any more than what I knew last post.

But I am facing a difficult time. My eldest son, H, is being slowly pushed out of the schooling system. The school wants him gone, basically. He is in year 9 and I’ve been told he’s been given ‘chances’, ‘opportunities’ and they have ‘done all they can for him’. The sooner he can leave that place, the better.

To what, though? No one will employ him. I face an uphill battle getting him into uni at only 15. He cannot sit at home on his computer.

All the school is telling him through their actions is that he is to be punished for being who he is. He is to be out cast from the norm. Oh hooray.

All because he won’t do some work and he won’t do homework. He is now on a path where he feels extremely alienated from society. He knows life is unfair, unjust and cruel. The school is kicking him in the guts.

Whilst I am deeply disappointed in the school, this could be a great time for H to open himself up to the world. It might be good for him in the long run.

I am clearly too emotional to have all this make sense.

Yet another Ugly Ducking is desperately seeking his home, his tribe. It breaks my heart.

This is the reality.

I often get asked what I’m doing/have done in the weekend. Usually it is nothing. Or I answer listing the chores I have done. This is my life as it currently stands.

Let’s take this long Easter weekend, for instance. It is a 4 day long weekend. While others are camping, eating out or enjoying water sports, I was at a Marxist Convention in the city – an hour train ride away.

It was held over 3 days and was a series of 1.5hr long talks and commentary sessions, from 9.30am til 8.30pm. It was hard going for my brain, which has been away from Marxist terminology for 15 yrs. I went, simply to chaperone H, who has no street wiseness. I did it because I love my son and his current interest is Communism and Socialism. Why would I not take him?!

I had to answer his questions, remind him to eat and drink, keep him grounded and assure myself he still had his belongings. I was on high mental alert the three days and I came home so taxed that I was asleep by 8pm. H is sometimes so anti social that he just ignores those who speak to him. I had to keep him civil enough to ensure a polite interaction went by as quickly as possible.

Then yesterday was D’s normal prophylactic injection day. I inject a product called Factor into his vein twice-three times a week. D is supposed to be testosterone tidden so his veins will pop up. This isn’t happening because D uses food to self soothe. And during school holidays, he eats more. I work full time, so I cannot monitor his eating. So, D is putting on weight and the two veins D will let us use are scarred and hard to find. I dug at his arms 6 times yesterday…and no blood.

I tried today and still no vein access. I will try tonight. If I miss, his veins will need a rest for a week. So, the risk of D having a bleed sky rockets. That means time off work, going to the children’s hospital and consoling an autistic boy who hates haemophilia.

Bleeds do not happen by schedule. They happen whenever. Day, night, at home or out. I am now on mental alert for the first sign of a bleed. It means an hour drivd into the city. Not fun when I have to fix heavy trucks tomorrow.

Don’t get me wrong. I am not complaining. D is alive and I am grateful. I am explaining why I do not do things others my age do. I cannot get drunk; I cannot go out with mates. Both my boys are increasingly anti social and are not wanting to leave the house. They do not want to go camping, go out and watch football or go waterskiing. There are sensory issues and haemophilia to consider.

Teaching the boys to do chores is time consuming. I have to supervise the whole lot. H wonders if he has done the job right and D slacks off. So, I do most chores myself.

I am tired. I wanted a few days to recover from life. Instead, I’m now nervous about finding a vein a few mm wide.

All of a sudden…

I’ve noticed I am petfectly ok with being autistic. I have been seeking this inner peace for so long. I finally have it. It does not mean life is by any means perfect, but I am quite at ease with  being me. It has happened of its own accord quite suddenly.

Who’d have imagined I’d have one word instill me with a restfulness that I have been dreaming of? And it feels liberating. I am what I am. The horrid self talk has died down a lot. I don’t expect myself to fit in – at all even. I can breathe, listen to the birds, enjoy my coffee and feel there is a tomorrow worth staying here for.

A lot has to do with a change in management at work. It makes a huge difference to have a calm manager who sees the big picture and to assure me all is ok.

I’ve noticed I am more autistic than ever. I slur my words more than usual, I bump into things a few meters away, I don’t force eye contact (yuck!😨), I flit from topic to topic, I laugh alone about things I remember, I am silent most days, I tend to avoid Facebook, I am more besotted than ever with perfume, I listen to physics podcasts every night, I eat the same foods for weeks on end, my hair is an absolute mess, I enter my brain and look absent more often, I rock and squeeze my muscles, I clench my jaw and grind my teeth in repetitive patterns, I collect Darth Vader items (pragmatic things like cups, keyrings, notebooks etc), I daydream about being Darth Vader (semi kidding), I still dream of owning my own COMPLETE Pantone card collection and I go slack jaw over the new Ford Mustangs as I see one.

If you were to meet me, you’d see a very immature child-woman. I have a reasonably muscled, but lean body, an increasingly grey mop of hair, dark bags under my eyes and a half asleep look that I didn’t know I had til just a few years ago. I seem quite teen like, in that I am still very mobile and I dress in tomboyish clothes. But I can also be a cranky, bland middle aged lady. I rarely come across as someone like Julianne Moore or Monica Belucci – women around my age. I am the weird one making faces in the corner of a group photo. And this is now ok. I am ok.



Finding my amazing!

Alas, this is not an upbeat sort of post. More a wistful, contemplative type post.

As I’ve mentioned briefly, my autism involves an inability to know of my presence in the world. I literally have to ask and be told about myself. I know facts about what I am, such as my height, weight, eye colour and the like, but I know nothing about how I am received by others, what I look like in relation to others, or what I do well at.

I’ve always done what I enjoy, though my academic career happened because I thought I was good at understanding theory, had a razor sharp mind and I could write a decent thesis. I was told by others that what I did so naturally was fantastic. I am not so sure.

My marks by the end of my BA and Hons years were indicative of my talent for socio cultural anthropology, but I suspect I simply cracked the code for writing what supervisors wanted to hear. I know I had an uncanny ability to read Foucault half asleep and paraphrase what I read. But I STILL cannot understand anything Homi Bhabha writes.  *shame face*

I don’t actually have any of the things some have said I have. I appear to have them. Truth be known, I don’t do anything other than because I enjoy it, or it is duty for my children and mother. I don’t do things because I am good at them. I tried, as a teen and into my 20s, to do things to find out what I was good at, but I ended up hating what I did. I discovered in my late 20s/early 30s to follow my heart and not my brain. I now know why I do not trust my brain; it simply has no idea.

Anyway, all this is to set the scene. I would like to be known as being amazing for something. Something I find meaningful. Something that aligns with my ethics, morals, values, interests and my need to leave a noted mark of my presence here. It does not require I amass a fortune or fame. Just to have others say “Aren’t you amazing?!” about something I do.

I don’t want it for an ego boost, to flaunt my abilities over others, but to know what it is like to feel I am giving something of value to another. And have it appreciated. And to let me know what it is I can do right.

I have to gauge myself in not being told off. If I am not causing upset, offense or creating mistakes, then I must be ok at things. But that isnt’t enough. I’d LOVE to know what I great at; to find my amazing. I am just not told. I’ve only been told during my PhD years that I was known for my razor sharp mind. It sure didn’t feel to me I did anything remotely worth mentioning, yet about 5 people said it.

Right now, my brain is mush. I haven’t fully recovered from pregnancy, breast feeding, moving overseas and back, doing body building comps, working at a physically demanding job, haemophilia, family break ups and our diagnoses. It has been an ongoing drain of energy since 2001. I am not sure I’ll ever have the energy to be razor sharp ever again. So, how else can I find my amazing?

This autistic black duck is a jack of all trades. I am most certainly a master of none. Am I that bland a person? That invisible?

What is your amazing? (And Ms Wave, we all know yours, so you require no comment. 😂)