#Somekidsbooks are life changing

This post is a repeat of a letter I wrote to author Nelly Thomas and illustrator Cat McInnes about the book I received in the mail on the 14th August 2019.  A book called “Some Brains” that it seems I really had been waiting 48 years for…

Dear Nelly and Cat,

The poor postman thought he was being mugged. I heard him open the gate (from some distance away I might add). My service dog Pepper, whose been super chill all morning, leapt to her feet and scooted with me to the door, sensing something big was happening.

Some+Brains+Cover_smallI chatted to the postman and opened it in front of him, and out popped the colourful cover of Some Brains. Pepper decided to comfort the postman, cause he seemed surprised at the excitement over a book. I was working from home today, so I went and sat in the quiet of my bedroom and poured over the pages.

Pepper knows that if I cry, she is to comfort me. But today she recognised the tears streaming down my face were tears not in need of comfort. They were tears of absolute relief.

Relief that FINALLY a depiction of neurodiverse kids is so clear and so positive.
My childhood was not filled with such messages. It was filled with trying to make me fit societal structures that didn’t fit me and the resulting psychological and physical pain and discomfort. I’ve struggled to be myself until my mid 40’s. But now my voice is louder than ever and the neurodiversity movement is responsible for helping me to find that voice.

This book will fundamentally change lives. It has just fundamentally changed mine for the better and it’s only been in my possession less than an hour.

Thank you!
With enormous respect and love,
Jacci

*folks – check out SOME KIDS BOOKS for how to get a copy of “Some Brains
#neurodiversity
#actuallyautistic

Gossip has different forms. Can you tell the difference?

I actually have a formula for measuring gossip.  Yep.  You read that right.

Despite what you might have heard, gossip is not always bad (ha! see what I did there?). Gossip has been a way to bond for humanity and it’s what we do to connect.  It’s might be good to know you both admire Nicole Kidman’s movies but dislike her choices in men (or underwear or whatever).  If you don’t gossip it can be socially isolating and trust me this I know because I went through a period where I refused to engage because I didn’t get it.  But just as there is positive gossip, or what I call bonding gossip, there is negative gossip, something I will call malicious gossip.  These are my labels that I use to help myself deal with gossip.

As an Autistic person (this is the language for myself I prefer) I am very prone to getting “sucked in” to peoples conversations and getting stuck there. It’s no secret that that spectrum folk may engage in a conversation armed with their handy bag of small talk scripts they’ve learned or been taught as part of the mask used to fit in. But masking is not healthy for us, can cause us physical and psychological harm. The effort spent trying to see an endgame of small talk can be damaging to our different communication style that is hard wired to our unique operating system. Gossip is an example of small talk spectrum folk may struggle with, but apparently so do a lot of the rest of the population.

We may end up stuck in repeat conversations that make us uncomfortable and take too long to see malicious gossip, desperately trying to take the conversation somewhere else.  What can happen is that the person with malicious intent then sees me as an ally and I can end up with a sort of communication Stockholm syndrome.  Now in my late 40’s, I’ve ended ten year friendships in my late thirties that I reflect upon with utter shock that I stayed that long.  I don’t get the need for small talk or gossip intended to deceive in conversation to impress or for status, those of us on the spectrum prefer honesty and our conversations are content or topic driven, not connection driven.  We take a long time to connect and can get trapped with people around us we don’t really need nor want in our lives.

This is part of the reason why we might find ourselves hurt by false friendships, particularly as young people (“the hate and mate syndrome” – manipulated and hurt by friends), which is perceived as “running with the wrong crowd” while we really are being abused and manipulated. I’m not going into the how’s and why’s of this right now. For the moment, you’ll have to trust me (or click the links and do that emotional labour and educate yourself). And if you have that myth about no empathy and autism on the tip of your tongue…here…that link just there explains it nicely! We have bucket-loads of affective and compassionate empathy and yep…see that above again…

The key thing is that while neurotypical (NT) people might brush it off, we will process it differently and it will impact us more (leading to issues like shut down and burn out).  I often take until the sixth uncomfortable conversation to realise this person is going to keep malicious gossip up…and that they are not just needing support to deal with a difficult situation.  I don’t actually see the point of gossip and don’t enjoy it all, but I now recognise people use it to bond or divide and conquer, and perhaps a little in between.

I personally prefer interesting world history discussions, but there you have it.

I frequently use counselling to gain new conversation scripts as I get older and recently found that my counsellor benefitted from how I had come to understand gossip and encouraged me to write this post.  So here goes!

But first some geometry (of sorts!)…

Gossip is a form of triangulation.  Which canKarpman-Drama-Triangle-How-to-STOP-the-Drama1 be either bad or good.  A goes to talk to C to discuss B about an issue.

In conflict resolution triangulation is seen as a major cause of conflict when the A, B, C become the roles of persecutor, victim and rescuer and a cycle of drama ensues.

Yet the cycle can be broken by changing the dynamic of the triangle.  The Karpman drama triangle models present ways to do that.

I need to point out that the person A may genuinely need help to advocate for themselves – but the important thing is to break the cycle with any advocacy.   The Karpman model is something I constantly refer to in regard to malicious gossip.

A formula for measuring gossip

So at some point in my life I realised listening to the drama of malicious gossip too long was hurting me and I took actions to change the circle of people around me.  I knew that I often don’t read the intent of lies and manipulation until further into an interaction and I need a non-emotional logical way of measuring “gossip” that people might present me with.  I can boldly say I don’t have people who use malicious gossip around me now and life has never been better.

I use a formula to measure malicious intent.

Proximity (P) + negative content (N) = Malicious Gossip Rating (MGR).

Each is measured out of a possible score of ten and the total out of twenty is the GR.  The higher the gossip rating the more I avoid it or invoke the Karpman Drama Triangle.

Generally a score of over ten out of twenty invokes the Karpman interventions!  Or I just stop associating with the gossiper.

High scores in proximity means the person the gossip targets is close at hand, like a colleague or friend that both of you know well and this may be the time you question why they haven’t raised what they are with you – with the person themselves.  Similarly the more negative the content the higher the scores.

Higher scores mean…use questions about why and maybe use the Karpman drama techniques.  Or run the hell away if you can.

The score decreases as the distance between people increases and as the content is more like fluffy bunnies or helpful conversations or general chit chat.  Because let’s face it, a conversation about Drew Barrymore’s shoe choices from someone in Australia is not going to hurt anyone.  Well I hope not. I suppose it could if you were committed to copying her shoe choices…but I digress…

And lower negative content scores with high proximity might have touches of issues and choices and ways to care for one another that can’t be had with the person in someone seeking support.

Here’s a handy chart as to what it looks like.  It probably best tells the story!  All of these is obvious for some people, but not me. And over the years this was my Dr Spock logic for it. It helps me stick around positive, kind people and stay away from nasty drama.

MGR formula

Being okay with not being okay

People who know me really well are fully aware I struggle with feelings of social isolation, even when surrounded by people who care. I’m currently trying really hard not to give into feelings I don’t belong anywhere and each day is a monumental exercise of survival. I’m trying not to give up because I still believe I have something to offer, now matter how minuscule.

With a Royal Commission into abuse and violence of disabled people (I’m exercising my right to use identity first language here) coming up – I have lots of stories to share. Mainly about trying to get help in the so-called health system and being told similar to the 17 year old in this story.

https://www.smh.com.au/healthcare/autistic-people-dying-at-twice-rate-of-general-population-new-study-20190225-p5105t.html

Some of the stories from my 20’s include violence, restraint and abuse from healthcare professionals and family members. All as I grappled to come to terms with what I now know to be AS meltdowns and an escalation of issues after a significant and life threatening injury.

Because of regular experiences like that I’ve got to the point where I don’t believe that I deserve a family or partner and for the last 7 years I’ve avoided new close relationships – because I can’t handle anymore violence. When it comes to close personal relationships I can’t tell when someone is trying to take advantage of me and people have done exactly that.

I’m also going to talk publicly about what happens to us when we go to emergency rooms, when we are told that we need to be sedated and go home and sleep (as a GP recently told me) because of other people’s violence against us. How we are dismissed and abused further when we start to crack because we’ve been trying to express things in our own way after months or years of trying to get help. When we are told we are mental or crazy for not wanting to be assaulted or verbally abused.

Fuck “Are you okay?” campaigns. Cause when we are okay with not being okay we are dismissed, ignored or told we are burdens.

Not sure why we need to spend millions on campaigns to justify asking for help when you ask for help to be told to suck it and see. Makes not much sense.

Most of my wage is now spent on just trying to keep well in the hope things will get better. I’m resigned to the fact I have a short shelf life and I’m determined to do what I can so that others don’t go through what I have. It’s not about me. I don’t care enough about myself for it to be about me.

In the 80’s and 90’s I could access services without it costing $180+ an hour (yes, after the Medicare rebate and no, private insurance is not helpful), now I’m pushed from pillar to post trying to get a therapy that has worked for over the last 25 years.

I can’t turn off what I experience. I can manage it, but there are times when I need more help and I’m asking for help only to not be able to get the right help because it’s $250 an hour. I get 10 visits a year at $180 and I need 30. Plus I need OT I can’t afford.

Then people try and offer essential fucking oils like people say “the only disability is a bad attitude”. To cite Stella Young no amount of smiling at the system is going to change it.

I want to work. I don’t want months off and homelessness and long periods of financial difficulty. I’ve done that three times now. Next time I won’t come back from it, I know this.

I get that for some, I fit a “burden of disease argument” and for many “tax payers” I don’t deserve help, that’s the message loud and clear. But for the moment, I’m still here and still trying.

Pirates and Poems

My special interest as an Aspie is language.

At uni it was the language of power and propaganda. That gets me jobs.

At home it’s poetry and prose. That gives me joy.

On stage it’s comedic poetry, wordplay, political statements through satire and parody. That gives me satisfaction.

Yesterday I performed in a Melbourne poetry event – my first since I moved here.

Got to include another love (costumes) with poetry and comedy and got to dress up as a zombie pirate in a dead pirates themed event.

I’ve poetry slammed twice in Alice Springs and was wanting to continue when I moved. Last Dirty Word I did in Alice I did a serious poem about DV. It was very personal and very hard to do. But I’m glad I did.

Here’s one of my more serious poems…

Me as Zombie Pirate.

The Strange Girl’s Dad

Deep in my mind’s eye

I see you, Dad, again

Framed by blue sky

And I’m a little girl again

You look down at me

And take my hand

I look up and all I see

Is that smiling man

No one understood me

I was “that” kid

You were the only family

That didn’t want me hid

They’d talk around me

As though I wasn’t here

You’d try to make them see

That I was standing there

You saw creative clever me

And it always made you mad

That they were too cruel to see

Beyond the strange girl’s Dad

I’ll miss you always

When I struggle too

They’re the longest days

Endless memories of you

I wish you were here

To take my hand

Tell them not to sneer

To help them understand

Those days together

The best days I had

I’ll always remember

My strange girl’s Dad.

Are we brainwashed to believe we can’t be experts in our own lives?

In various teaching and employment workforce roles I have had I am often led to work with people’s ability to “think around corners”, “think for themselves” or “develop critical thinking”. 

I have been dealing with various levels of human “dysfunction” related to negative patterns of behaviour for many years, often because of my own levels of dysfunction.

I have smashed some of my own “dysfunctions” (namely recovering from a brain injury and several other injurious events and addictions).  Sometimes people call me “amazing” or “remarkable” as a way to deflect from the fact that if I can do it – so can they.  I am always telling people they are the experts in their own lives and that I am no more amazing than the average gnat.

So I have ended up a facilitator of thoughts and ideas and often get emails and a throng of my ex students who credit me with changing their thinking.  I remind them that they changed their own thinking – I did relatively little, they did the work.

They laugh at this and then agree.  Hooray!!!!

Are we so brainwashed as a culture that we have to believe our experts have all the answers all the time?

Are we not losing site of our own capabilities and depending on experts for answers we already have?

How do we know that the expert is right?

Do we want to be right or do we want to be happy?

I’ve been where most people seem to want to go.  Mortgage, cars, income over 100k (just one income too) and I returned from that place and rejected it.  Now, by many peoples standards, that makes me a “loser”.   Ironically, most of it has been a choice and a lot of it has been because of illness and burn out.  But even then – I know I chose to burn out.  But I also got here (and I am 100% liking where I am going now – which is not to another mortgage) because I spent most of my time trusting the words of experts.  Sometimes negatively, sometimes positively.

I gave medical experts the “proverbial middle finger” 22 years ago to overcome an injury caused by four days in a hyperbaric chamber after getting neurological decompression injury.  I went to a neuropsychologist who told me I could rewire my brain (neuroplasticity) – something that was not accepted science then.  I was told by many I was wasting my time, but it turns out that now neuroplasticity is now considered cutting edge.  I chose to go with my gut and try something new, but if I had listened to mainstream experts I wouldn’t have even tried.

Now I check the experts status against my own understandings of what works for me and what doesn’t.

My own checklist for testing if they are patronising poops or got a clue.  I keep abreast of research on brain function.

I’m working with an OT at the moment cause I’ve had some major dramas with old injuries and my cognition again.

My new OT has introduced me to the joys of neuro-diversity.  This posits that we all think differently and this fits with the neuro-plastic scientific view that we are all wired differently.

Check this out –

https://antispeciesistwomen.wordpress.com/2015/06/16/new-aiws-project-the-girl-who-didnt-know-how-to-be/

I know why it’s happening and it’s a tricky situation.  It’s putting off any adventures for the moment and I’m a bit cranky with myself for letting it happen.

Never mind, next challenge.  Oh and I am no longer prepared to accept the term “brain injured”.  I am replacing it with neuro-divergent.