Zilch. Nothing. Not a word. I just don’t want to interact. I need a holiday, simply to day dream, read, rest and eat. Sorry good folks.
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. 😂)
Weeeeell, sort of. It is the outline of what I’d like the rest of my life to be.
I have always said I’m not money oriented. Largely, that holds true, but I am aware that some degree of quiet wealth would afford me some opportunities I’d love to experience and I’d be able to address some financial wrongs others have caused those close to me.
I’d love to have my own humble abode. To be able to deck it out in autism heavenly sensory ways. I’d have a slide into a sunken lounge and beanbags and lovely Moroccan cushions scattered all over the floor. I’d have a Snoezelen set up in said sunken lounge, so I could trip on atmospheric sounds and acidic light projections. Each room would have a squeeze roller I’d have to roll through to enter and I’d have my bed in a foam castle. There would be a golden rope I’d have to climb down to get off my bed.
My bathroom would be a fernery with a giant bath and a duck living in a small bath next to me. My house would have natural lighting with sky lights everywhere. I’d have down lights with dimmer switches.
My kitchen would have a wood oven and easy to clean floor and benches. My fridge would be enormous and my freezer to be walk in. I would have a FULL Italian espresso machine just for my own use. It would be red.
The most important room would be my salon where I’d have my perfumes stored. It would be humidity proof and temperature controlled. There would be crystal bling, mirrors, powder puffs (though I loathe touching powder), a lovely sateen stool for me to sit and a book chair for me to contemplate. The scents would be arranged according to houses and notes. All would be boxed and all having whatever bath products available.
I’d need an extensive library too. No electronics allowed in the library. All furniture must be wood. No food, no drink. (Except my coffee.) I’d have a bay chair in the window to capture the sun on weekends and for my umpteen kitties to bask.
I’d have room to practice my handstands against a wall and I’d have paints and easels all over the place. There’d be a telescope on the roof, automotive tools in my shed and bubbles on every bench – in case I felt like blowing bubbles!
I need to travel, so twice a year visits to where ever I felt would be ideal. Just two weeks away would do; not including the travel time!
People have been cheated of money by my step father. I would love to be able to give them the money they gave him. It made me ill, as a child, to hear of what step father had done. I vowed that if I ever had enough (about $200K) to repay these folk, I would. A cheque from an anonymous donor. Not a word, but karma kissing back.
And I would love to be able to set up scholarshops for autistic women to go to uni or enter a trade. I am a passionate advocate for autistic women to have a meaningful working life, with a decent wage or income stream. Those with children, are single and from a background of abuse rarely thrive financially. It is wrong. I’d love to make life more satisfying for women like us. To wake up loving what they do, doing it with pride and knowing they and their children are safe and secure. I just don’t know how I can make this happen right now.
The idea of a house, a home, to call my own is a pipe dream. I will travel, but it will only be short beach breaks in Asia. I am realistic enough to realise making money isn’t my forté. I wish it were. Not for the greed, but for the opportunities I can share. It is the last part of my dream I want to see come to fruition. No one should be unemployed simply because they see the world with a different lens. We all have something to contribute and too few of us know what we bring that is positive.
So many of us are told daily how we are wrong, stupid, naive, unintelligent, a burden, missing something… but not told what we do right, what we do well and what could make a future for ourselves. It has to start with an autistic business mindset. Sadly, the very thing I lack.
It is free to dream. It is liberating. And it is better than me being in my self imposed quagmire of self pity. At least my mind is moving forward and my soul is demanding action.
Well, my two boys and I. Much to the chagrin of my mother, with whom we live. She is outnumbered as an allistic, but I do have my doubts she is all that (pun intended). I digress…
D’s diagnosis was quite simple. I chose the same man who diagnosed H because he knows us, advicates for an all inclusive world and I know him. D was diagnosed quite quickly, like H, except D presents in a more classic way to H’s Aspergery, HFA way. (H likes to use HFA. D and I prefer autism.) I gather the differentiation is speech. D was a very late speaker and is not too keen speaking unless it is to someone he really likes and wants to bond with or he is recalling songs or dialogues from Youtube. He also slurred his words til he was 6yo and spoke in an American accent til he went to kinder. There are very marked differences between how my boys present.
H likes to flsp his arms and use quick movements to stim. He has a loud voice and does not mind making annoying sounds. He has problems coordinating his strength and position of his body in space, so he has broken do many dining sets and glasses. He is very tactile sensitive and hates surprising, loud noises. His IQ is quite something and it means he can mask his autism well, using his observations of people.
D, on the other hand, holds his body in awkward ways, runs with a 3yo gait, withdraws from people, has dead pan expressions, uses a lot of echolalia in his ordinary speech (mimics what others say), hates certain clothing and bed sheets, sensitive to smells, very particular about routines and order (ok, he is anal) and has a very strong sense of social justice.
The boys are chalk and cheese. But they are best mates. They bounce off each other’s strengths and weaknesses, share similar humour and like very similar things. I am so blessed to have two beautiful souls as sons.
So, I had to fill in two questionnaires, as I had already compiled a 6 page report and sent it last week. I sent school reports and examples of things others had made for D whilst he was last in hospital. D’s general IQ was assessed and a pattern apparently emerges that is particular to ASD folk. D’s cognitive wraknesses are the same as H’s, but an octave lower. So, while H’s vocabulary was IQ equivalent of 142, D’s was 132, for nstance. And all the others were the same overall graph pattern, yet pushed down the chart a tad.
I had an hour interview with the psychologist to clear up some issues and answwr questions, but D was clear to the psychologist within half an hour. There are tell tale signs. D smiles at things he thinks of at random times, he rocks visably when nervous, mininal eye contact, he lacks any expression until he REALLY knows you, he answers all questions as if all questions are closed (requiring single word answers), he wears clothing I’m not overly fond of and makes him seem like Comic Book Guy from The Simpsons, and he can quickly correct mistakes in factual information.
Now I wait for a report. A copy will be sent to the school. This assessment was essentially done to provide the school with his diagnosis in print. An expensive exercise in appeasing the authority. But it is done and D seems happy to have a reason to why he feels so different.
I was never a cool girl. I always hung around the fringes of the ‘germy’ kids; rural Aussie 80s slang for the social misfits at school. I never really fit in with them either because I yearned so much to have my potential as a cool girl seen. I hung out for the day some person recognised me as a deep-down cool girl.
Looking back at all my school photos, and all photos, really, of me from a baby onwàrds, I seem to have hunched shoulders, a sad look in my eyes, never right hair, the wrong expression for the moment in which the photo was taken. I look at the girls I wanted so much to be like and everything about them was SO different. Their shoulders were thrown back and strong, they looked into the camera with fully engaged and lively eyes, on point hair styles and big smiles.
I had always held a hope that I would grow into what comes naturally for cool girls, or the ice queen elegant sort. I demolished books about teen girls who were plain, spent a summer abroad and returned a total babe. I am now 43 (I think…) and I am now fully reconciled to the fact I am what I am. A slow learner, alright…!
It isn’t simply a matter of looks or sex appeal or vibe. It was about me fitting in. Take, for instance, Amal Clooney nee Alamuddin. She has her shit fully together. She oozes intelligence, street smarts, confidence, self acceptance and more grace than Ms Kelly ever had. She is my ultimate IT woman. She is the sort I hoped to be like. It seems ludicris now, but it was my heart felt desire to be recognised as one. It would mean I am no longer the space cadet I am.
I always had tears upon listening to The Ugly Duckling story. I knew what it felt like to be that duckling. But it is all ok because the duckling becomes Ms Alamuddin. Doesn’t she??! No. Alas, I am no swan. I am no duckling. I’m not sure what I am, but I often feel like the rarely seen lizard that hides under the awnings, seeking the cool of the night to be alone to hunt for bugs no one cares about.
The good news is, I have ceased caring. And it is actually liberating. For the first time since I was about 12yo, I feel like I’m perfectly ok being me. As long as I don’t look into a mirror, I’ll travel through the rest of my life grateful I have more freedom than Mrs Clooney.
I can twist my face into any expression I like, I can wrestle kids on a bowling green, I can eat any cream cake I choose, I can walk out the house make up free and hair awry, I can say stuid things with not a soul to hear me. I may not be a cool girl, but I sure have some aspects of life firmly in my favour!
If I could, I’d go back to when I was ten and tell that desperate little girl to not watch Fame, but to continue watching Dr Who and Inspector Gadget. I’d tell her to not stop loving motorbikes and cars because it wasn’t seemly for a bookish girl to be interested in such things. I’d tell her to not give up her day dreaming abd imaginary worlds she spent all weekend living in. I’d speak of all the role models who did incredible things with their mind and not their street cred. Oh…the things that poor little girl needed to know.
But you and I know something rather significant, don’t we?! Sssh. She DOES become her own form of cool. And she will totally own it. 👊
I have a fear of dying and not leaving a legacy. Not fame or riches, but something I have contributed to making the world a better place. So far, I have contributed zilch. Other than my boys, zilch. Not a thing.
At high school, I was considered the one to go far career wise. At uni, I was the one expected to become a pseudo-French feminist, taking on the most complex minds in academia. Sorry, everyone. I failed.
I look around and marvel that I made it to middle age. I had not bet on that happening. I also am amazed I have two fabulous young men. My boys are my world. But then, I have equal parts of me absolutely devastated I have NO signifier of success. At all. An incomplete PhD, an incomplete MEd, no published works, no creativity, no friendships, no anything. It is almost like my life is barely registered as having taken place. Behind me are burned bridges and my funeral will be devoid of mourners.
Everytime I read about gifted autistics, brilliant Aspies conquering the world, I feel my soul sink a little more. Each year that passes, I am consciously aware of each wasted moment I’ve had.
The truth is, I am boring and completely average. I was told I was smart as a child. I was told I was intellectually sharp at uni. But I was also told many more things less savoury about myself. The crux of it is, I have no talent, skill, passion or ability that will leave a mark, my mark.
I am learning I am not particularly smart. I am not intellectually sharp. I may have been, but I dropped my identity being contingent upon these two aspects of myself. While I’be been freed from having to be master of obscure cultural theory, I’ve been exploring what life has on offer. Not much for a woman like me.
Oh, to have a talent! Oh, to make a mark!!
Laina of The Silent Wave wrote a great piece on feelings of fondness of people. She explored how she positions people according to her feelings for them, and how her way differs from NT understandings of friendship and closeness.
I want to bounce off this and work through how I differentiate people in my mind. It is pretty simple. A person is either safe for me and my children to be around, or not. That is it. I don’t care if you have purple skin, follow a Mormon’s lifestyle, like to dress in pink frills, have not a cent to your name or cut your toe nails at the kitchen table (though that’s pushing me…!). As long as you do not hurt or take advantage of humans or animals, you are welcome.
I have always had a diverse friend base. I have only two friends now, both of whom live far away. But even so, I have no qualms speaking with anyone or inviting people into my life. As a result of my wide acceptance of folk, I’ve known some unique characters. I think that has enriched my life in many ways. The problem has always been having everyone in one room for celebrations. They just don’t seem to mix.
Other than my two oldest friends, I am not particularly close to anyone. It really does not bother me, generally, to never catch up with anyone. No one has bothered to want to be friends, and though I do feel pangs of existential loneliness, I am not perterbed by a lack of company.
I am not sure if that comes of getting older and more care worn, burned by past episodes or the effort of making new friends seems to be too great. I have my boys and they are all the company I need…for now. At any rate, I think part of it is accepting no one wants to befriend me.
I don’t see people as like/dislike. You are all somewhat the same. As long as you do not harm me or my boys, I am a friend. I cannot fathom how others can not accept people due to quite unnecessary differentiators. I have probably had a very large one sided friend list all my life! All these people I consider a friend because I have met them and they seem safe, yet they may not even know my name, let alone consider me an aquaintance!!
One warning, though. Lie to me to elicit a desired response from me, or hurt us deliberately – you are gone. Support me and see the beauty in everyone, and you have me for life. I am fiercely loyal as a friend.