I have a dream!

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.

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We are all officially diagnosed as autistic.

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 wanted to be …. when I grew up.

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. 👊

Oh no! It has just occured to me I’m nondescript.

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!!

How I differentiate people.

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.

An ‘appropriate’ companion.

I have this idea, that I should have allocated an ‘appropriate’ companion. Like the blind have seeing eye dogs, I’d love a pal who can read life and people for me. And help me find an appropriate way to be.

I feel like I’m a wayward grouch lately. I am too tired to put on my public face and too tired to feign politeness/responses/etc in an appropriate manner. I’d find using an autism ID card a bit pretentious, so a companion can speak for me, explaining why I am a social gumby. It would be great!

I really fouled up this entire weekend with my behaviour and moods. It took me three whole days to decompress the wound up soul within.

Yeah, nah. Maybe not. Then I’d have to interact with my companion. Just no way.

The diagnosis story.

First, let me assure you I shall finish my employment tales one day soon. I really need to be in the mood. The emotions it raises….yikes.

Ahhh, yes; my diagnosis. My boys are quirky, but H is eccentric and intellectually gifted. D is more classic autism in his presentation and as equally, but differently, gifted as H. They are chalk and cheese who meld together so beautifully. It is through them being flagged by teachers that I came to see me.

Since I was 16, I’ve been professional hopping, trying to find someone who might explain my rainbow coloured fleece. Having no mirror, I could not understand why all the sheeple would exile me and hurl metaphoric sticks at me. I baa at the right times, I follow the herd and I eat grass. What is the issue?!

I didn’t know it isn’t sheeple to go off on one’s own for adventures, act as though rainbow fleece is desirable, shield other maligned sheeple from hurled objects, or baa in different accents.

My boys are not sheeple. D tries to be, and has recently realised he is never going to be alpha sheeple of the herd. H has never bothered. I am trying to get the boys to revel in their uniqueness and embrace it as the B-boys of the East Coast hip hop scene did in the late 70s. But I had to acknowledge that the rest of the world was experiencing problems encountering my boys. And me.

I had a weird flash of an idea while in Bali last year. Autism, Asperger’s. I looked it up on Google and was surprised I obviously knew NOTHING beyond the so-called classic autism in non-verbal children; yeah, ok….boys. *shame face* Everything I read explained my boys, and if mini me H is a spectrumite….weeeell, it meant I am too. I looked up women, Asperger’s and adult. Whoa be still my brain!! I opened up a whole new world.

One of the first resources was Samantha Craft, which then lead to Tania Marshall and to Rudy Simone. It wasn’t until I found Tony Attwood that I became certain I am an ASDer too.

In my desperation to have myself FINALLY legitimised, I looked up diagnosis for females and found a service in the city. It seemed to have good reviews. I emailed them and received an apointment soon after. I delayed it, because I was fearful I was wrong about myself. I learned about masking and the nervous breakdown/mask falling off link, which made me feel better about progressing with a formal diagnosis.

I was asked to fill in some questionnaires and email them back. At the appointment (which was 2 hrs long), I was asked to elaborate on a stack of never ending questions. I took tangents, I free flowed….all in sheer relief I had someone in front of me who knew what planet I live on. It was exhausting, but I did it. I felt ill afterwards. What if I presented as a normal, faking woman??!

I suspect the questions were relevant; if not ering on the side of male presentation of autism, yet  HOW I responded gave three times as many clues. I was just myself, albeit nervous, nauseous and on edge a bit, and answered without trying to impress or cover over the ugly truth of who I am.

I came back the week after to be informed that I do have level 1 autism, as defined by the DSM-V. She said it was a clear cut case and I didn’t need input from my mum or others. She did note, however, my parenting of my boys and my descriptions of them really provided a lot of valuable information!!

It never occurred to me I might present as different to the world, in the same way I pick up on young women being deep, introspective, sensitive souls who bravely try to airbrush (clumsily) their differences away. My unkempt hair, fastidiously tomboyish but neat clothing, my sitting stance, my vacant-away-with-the-fairies stare…all this probably speaks volumes. I just don’t hear the music. People are surprised I am 43 yo. My greying hair gives it away, but my voice sounds young, I act immature (don’t say a word…), I dress like an introspective tomboy and I move like a teen. All this says something to the trained eye. I really could not have fooled the psych. She is NT and would see through my fakeness.

A piece of paper arrived a week later. It said I present as intelligent, have autism level 1 and any further reports can be requested. I am still in shock that others have had to go through much more for a diagnosis. Paet of me is pissed that I didn’t do fake NTing to my perfectionist level! All that effort and I didn’t pass?! Still, I am also pleased I know why I am not the usual cup of tea. In a world of English Breakfasts, I am a jasmine-lavender-rose-labdanum-carnation-clove tea. Take me how you like. I’m not too fussed.

I paid around AUD 800 for my two sessions, with no report.

H’s diagnosis a month later was very different. He went to an ASD specialist clinic. I provided my own list of reasons why teachers and I felt he has autism, I filled out two questionnaires at the clinic and I had an hour session straight after H had his. The psych knew within two minutes that H is a high functioning autistic (his words). H has a very strong personality with free flowing quirks that make him seem like a 4yo boy. Yet his IQ is up there *pointing upwards*. He has had his IQ tested three times already and it is very clear he is bright. H was diagnosed on the spot and a detailed 20 pg report arrived a month later.

I went ahead with a formal diagnosis to ease my mind. H got his diagnosis to prove to his school he isn’t willfully being a pain to some of the teachers. It is not US who need a diagnosis. It has always been others having a problem with us. We’ve had to pay for self portraits to be done to explain why we are so metaphorically ugly to the world. Putting the portraits next to others for comparison, it is clear that we are rainbow sheeple. Except H has sparkles in his fleece too. Poor D is yet to be diagnosed, but he is desperate to know why he is not alpha male worthy. He senses he has a fine set of ram’s horns, but he doesn’t yet know those horns have clown’s noses on the end. It is going to hurt him to discover this.

D is seeing the same man H saw. Wish us luck.