Avalanches, Beyond Blue and Laughter Yoga

Laugh. I love making people laugh.

Yet I have not laughed much myself for near on two years.  The decision to move to Melbourne after living remote for a long time has been hard.

It has taken a monumental mental health crash to realise this. My social anxiety has been debilitating since a workplace injury.  But I am working really hard to recover.  But I need to sleep a lot, and I have had to ask for help and get help like I haven’t had to since my 20’s (when I was recovering from a temporary brain injury).

Part of that is doing the things I love that are light years away from Community Services. In fact, it looks like I can no longer work in community services and I have had to grieve that.  One burn out too many.

I do have two comedy performances coming up (a creativity workshop and a small run of four shows in March) – but I was hoping that this year I would be performing more, not less. This mental health crash means I still need to perform, I just don’t have the spoons to do it much and I have to get lots of support to be able to. Self-care has been a struggle, but friends have rallied around and I am immensely grateful to them.

Yesterday I did the washing six times, the same washing. Because I would forget and go to sleep and…yep…rinse cycle.

Some might think that the definition of irony for someone who loves writing, producing and performing comedy is to experience the mental health challenges as I do.

Or is it? Oh dear, there is that dreaded stereotype about comedians and mental health.  But it isn’t just comedians.  It’s everyone that is at risk.

I repeat. EVERYONE.

I started this blog a long time ago when I was about to trek the Annapurna circuit in the Himalayas and this blog was to raise funds for Beyond Blue. And to talk about happiness, of all things. Since then it morphed into my comedy website.

The fact is that trip to Nepal was life changing, the evolution of this blog reflects that fact.  I was trekking with a partner and during the trek we just missed being caught in the October 2014 avalanche and freak storm that killed 39.  Our next two days of trekking were very scary indeed.

Things unravelled. My partner and I split two days later and when I returned to Australia I moved out two days after we landed.  The stress of these things brings truth to the fore.

For me that truth was, bisexual me was forcing a relationship that was making me miserable.  Playing house.  Those who know me well know that this is plainly ridiculous.  Even more ridiculous is that since then I have realised I am also grey asexual, meaning real attractions for me are rarer than for most. I was bullying myself to conform.

Today I felt like, for the first time since an awful period of suicidality in November/December 2019 – like I could be aware enough to count my blessings.  Whilst I practice gratitude, when you are facing intense mental health challenges you can be practicing but not really practicing.

Some things I have shed from my 45th year (the beginning of this blog) to my 50th year:

  • Gender binary conformity
  • Giving a shit about what other people think about me
  • Denial of my neurodiversity – being okay with both the strengths and impairment of being autistic and having chronic illness
  • The desire to conform to ideas of monetary success (money stress still sucks though)
  •  Throwing in the bin any remaining concerns about the expectations of my family to be CISHET, regular job, non-artistic or any of there discrimination of the basis of neurodivergence.

Some things I am embracing:

  • Family isn’t biological.  My friends are my family.
  • Love is love and everyone deserves it.
  • It’s okay to need help.
  • I like me for the first time ever.
  • The status quo is not for me, so an arts career is probably where I should be!
  • I don’t have to be all things to all people.
  • Don’t read the comments.
  • Fuck shame.  It can piss off.
  • ENBY BI GREY-A intersectionality.
  • Block trolls.
  • Stay political.

So now, at the beginning of my 50th year I think it’s time to laugh more.  Very soon I will be a laughter yoga leader and delivering this will make sure I am laughing with others, regularly.

I am going to laughter yoga, comedy write and rest myself back to better health.  I am very limited in the time I can spend on any task at the moment and I am aware this is long path yet.  But I will persist. To quote Joe Cocker, “I’ll get by with a little help from my friends”.

Picture of me laughing for attention.

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Accessible Workplace Attitudes

This is a continuation of a previous posts about autism, accessibility and employability.

Accessibility in a workplace isn’t just the physical infrastructure.

It’s an attitude.

For Autistic people we will push on trying to fit with your inaccessible attitudes. Often to our breaking points.

In recent years I’ve learned to walk away from inaccessible workplaces, but it’s always a difficult and physically and emotionally expensive exercise. And honestly, this is 2019, not 1919 and ableist attitudes belong in the past.

In my case I will ask lots of questions and require conversations about your priorities. I am not asking for much – just for you to be clear about your expectations.

It’s strange that workplaces often complain about people not asking questions. But when Autistic people ask questions for clarity – suddenly it’s our disability.

In every job I’ve had where people have invested a morning 15 minute conversation with me for the first two to three weeks (it’s not more than that usually), has seen me produce quality (and quantity) work beyond expectations.

In fact, my last few jobs have harnessed my ability to spot where systems need to be clearer as a skill. I’m proud to say I’ve been part of some pretty cool process improvement initiatives – where my ability to help find clarity within a team is appreciated. Other workplaces have got offended by me saying “there’s no workflow clarity” and behaved like spoiled toddlers (and these are the ones I run from now).

Neurotypical communication is all about hints and perceived politeness. Asking questions is our way of understanding these unspoken cues.

So don’t punish anyone (Autistic or not) for asking questions because you can’t be bothered doing something that everyone (Autistic or not) needs – providing job role clarity and clear work protocols and processes.

When we spectrum folk ask you to be direct, don’t be cruel. We can tell the difference despite whatever myth you have bought into about our “emotions”.

Another thing I’ve experienced with inaccessible attitudes: the false equivalence defensiveness.

This is where you say “but I’m the parent/partner/friend of a disabled/autistic person”.

We are not all the same – you are not an expert in each and every one of us, because you know or care for one of us. You are not more of an expert in our condition than we are.

If we need a variation to distribution of tasks, it’s not because we are difficult. It’s because we know enough about ourselves to know what works.

Some of us have been “able” to work in fields that are difficult just like anyone else. Some won’t be in that category and that doesn’t mean they are less either. The reason high/functioning labels have been tossed in the bin is simply because expectations are either too high or too low – and ability and impairment are not binaries.

Asking for a desk near a window or away from flickering lights or fluro tube lighting is no big deal.

And if I hear the “we can’t change everything for one person” crap one more time – I’ll vomit. The fact is the most productive workplaces are flexible ones where people are treated as individuals and not drones. You want slaves? Go back in time and become a Roman overlord!

In the case of the inaccessible workplace – we are not an accessibility problem, you’re attitude to us is.

I have had a career where people appreciate my skills and just accomodate my “inoffensive quirkiness”. Cause honestly, in workplaces not dominated by adults behaving like toddlers, that is accessibility.

I think I’ll end with following three thoughts:

  • The need for accessibility is not a choice – we don’t get up in the morning just to frustrated and annoy you by being different to you. But being an asshole about accessibility is a choice.
  • Discrimination is the choice to be an asshole about accessibility.

Don’t be an accessibility asshole.

revelatory comedy

On the 18th July 2018 I drove into Melbourne from Alice Springs to do a season of Melbourne Fringe (via Sydney Fringe) and to settle here after an assault in my day job left me depressed and unhappy.  This decision came after being in remote or overseas locations since 2005.  That’s not unusual for my profession.  I am an anthropologist by day.  In my 40’s I pursued what I had been afraid to all my life – being a comedian/writer/performer at every opportunity I can find.

I’m a variety type of human.  Some would say that’s because I am Autistic.  I think that’s accurate, I need novel ideas (and also more structure to pursue them than other humans, which a common contradiction in the Autistic experience).  But also, I am just easily bored.  But living back in Melbourne (last time I was four years old) has been more than transformative – opening up opportunities to be fully authentic on stage that is allowing me to be the same in life.

Art just doesn’t imitate life, it is life.  It makes you feel and do and change.  I am one of those people who still thinks comedy can be an artform.  I do skits, character and musical comedy with storytelling/narrative observation comedy woven in amongst it all.

I don’t perform as often as I would like.  I have some big sensory and social challenges to work around to get on stage, but once up there I love it.  Venue and performance accessibility is and always will be an issue for me, but I have carving my way regardless.

The last 12 months have been personally transformative, or rather, revelatory. I hold comedy 80% responsible for that.

I knew I would have to deal with culture shock.  The shock of coming from the remote Northern Territory to a city was one aspect.  But I had lived in a large Chinese city too, so that wasn’t the most of it.

What I found was that I wasn’t prepared for the changes it would prompt in me – that would allow me to be me.  You may recall a post where I had been diagnosed with depression just before I arrived in Melbourne.

I am happy to say I was not depressed, I was oppressing my true self.  That caused sporadic depression as not being authentic invariably does.  That’s not actually any rocket science really – but something so many people struggle with.

A kind of period of chaotic and complicated personal change took place in the last 12 months. This wasn’t a learning curve.  This was a learning mountain epic filmography, complete with crevices and dodgy theme music.

I knew I had to leave an mask behind when I came here, that Melbourne would have a much more accepting culture.   I had already started to drop the mask when I started doing comedy in 2016.  I fully accepted that the diagnosis of autism I had been grappling with (first mentioned to me in 2006, partial diagnosis for years until recently) and started to get my head around the fact it made me who I am – it didn’t make me less.

In my first ever comedy writing workshop, before my very first performance in Darwin I had a lightbulb moment. I was confronted with an exercise often done in comedy classes.  Two truths and a lie.  I did it well, but mainly because all of my stories about my life are weird.

My answers were:

  • I nearly married a Tunisian olive farmer during the second wave of the Arab spring revolution in 2011
  • I have just come back from living and working in China
  • I’ve been married three times

No one picked that I have only been married once. The other two are true.  My life and it’s funny stories made other people laugh and I love making people laugh.

I refuse to lie on stage.   I choose to embellish stories to get bigger laughs, but not lie.  In the process of finding material it has all come from my experience and research and knowledge combined.  Experiences such as being a late diagnosed autistic person, a late coming out queer (I actually outed myself on Channel 31 BentTV) as an ENBY-femme and gray asexual (I can hear some of you opening a Google tab…).

It’s not catharsis either, as some cynics have said to me.  It’s about me OWNING who I am and poking fun at world that dictates to us who we should be.  Plus I think the performance world is changing.  We are challenging non-disabled actors playing disabled parts.  We want real. That’s a good thing, not something to be cynically given a clinical label to.

There is part education though.  A fellow comedian once said “your comedy is like a TED talk, only funnier”.  I will take that.  That’s fine with me.

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Performing out and proud for “Wear it Purple” event at Hares and Hyenas – Produced by Teddy Darling. Photo by Margot Fink. Image description: Jacci standing on stage, arms raised, mid parody song, dressed in black with pride striped rainbow socks.

But putting my foot on stage for the first time prompted a wave of personal change for the better, but often through tumultuous times, like I never expected.

The mask has broken.  I am me on stage and increasingly more so than ever – off stage.

The comedy journey has been harsh and hilarious and helpful.  Sorry about the alliterations, it’s one of my autie quirks.

I refuse to do the low hanging fruit of comedy.  I aim to “punch up not punch down”, critiquing systems and the language of bigotry and prejudice.  If some think attacking bigotry and prejudice is punching down – then Google “false equivalence”.

So through four years or so of dabbling in comedy and several large-ish productions that I have written, produced and performed in (including the recent Melbourne Fringe opening night variety showcase “Tickets on Myself“).

A couple of thoughts why performance has set me free:

  1. Somewhat paradoxically, the opportunity to lie on stage (which I chose not to take) freed me of expectations to be other than myself.  Yep, you read that right.  Whilst I have never been described as fake, suddenly I was presented with something that I realised I had been doing all my life – and no longer wanted to do.  To stop lying to myself about who I was (we call this masking as a survival technique for Autistic people, but it’s nearly always harmful to us) and be myself.
  2. The influence of some amazing performers I have met along with way who are completely comfortable with who they are.  Some of these people are big names, some are not.  But none of them subscribe to “fake it until you make it”.  They ascribe to developing confidence, self-belief and bravery, which is something quite different, in my humble opinion.

Up until six months ago I was scared.  Recently I have found that holding the stage made me brave. So I went all out and revealed my true self. And it feels fucking marvellous.  

I need to give the incredible Nelly Thomas a huge shout out.  You may remember my post about her new book about neurodiversity, Some Brains. I was very privileged to have her as my Melbourne Fringe Navigate Program mentor.

The weekend before Tickets on Myself, she reminded and encouraged that me I only had one job – to bring joy.

And I did.  I hope I made you proud Nelly.  Thank you – you believing in me still makes me tear up (in a good way).

Finally, I remember being in this massive t-shirt market in Guiyang in China in 2014.  There was a wall covered in hundreds of the one t-shirt slogan, “Be Yourself”.  I remember it made me laugh heartily out loud.

The irony was here were mass produced t-shirt proclamations were telling us something the world least expects of us.

Because if the world did give us permission to fully be ourselves, the t-shirt industry would go broke.

After the world stripped me of the safety to be me, the comedy stage gave me myself back.  There is no going back now and that’s a beautiful thing.

I hope everyone puts down the t-shirt slogan and finds their own personal comedy stage, figuratively and literally, to be who they are, not what the world expects them to be.

#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

The Politics of the Convoluted Path to ASD Diagnosis for Adults.

I haven’t blogged for a while; I have been honouring the expression “learn to rest, not quit”.

I’m in the (costly and time consuming) process of getting the most detailed adult Autism diagnosis I have ever had.   It also involves understanding my history and how an old (largely recovered from) brain injury intersects with what I have come to know in the last decade (and accepted in the last three years) with my Autism. *Please note I use both person first (person with Autism) and identity first (Autistic person) descriptors to reflect the various positions in the community. I need to make note that Autism is not a mental health condition, but a neurobiological difference.  The experience of Autism discrimination and ableism results in mental health conditions for many people on the Autism spectrum. Regardless, we need to act to remove all stigma, for both Autism and mental health conditions and fully support and fund a better mental health system. 

There are both positives and negatives in this.  A part that has been hard to deal with is the fact that so much of the trauma of my life could have been prevented with early diagnosis.  However, early diagnosis in my family of origin and in the 1970’s to 1990’s could have been worse as well.  I may have been forever seen as a broken doll (more than I already was which was bad enough) and subjected to more medicalised abuse.  By this I mean family violence that weaponised medical grounds as an excuse.

A big positive is now I have new strategies to prevent the burn out and chronic health implications that have dotted the scenery that has been my life.  I may even be able to find a way out of the cycle of poverty and homelessness that I experience every couple of years.  Yes, me, I experience this, as educated and capable as I might seem, I’m Autistic and good at hiding the struggle as a matter of surviving the daily microaggressions life presents me.

But I want to talk more about the path to adult Autism diagnosis and why it’s so difficult to get one (particularly for women).  I have been down the path of years of misdiagnosis and I myself did not realise just how life changing the right diagnosis could be.

In fact, I was pretty anti-diagnosis before starting this process, mainly because I was misdiagnosed over and over again. This is not uncommon for women on the spectrum as this piece by Apoorva Mandavilli discusses in depth.

One of the things that stood out through the journey of the last three years of embracing Autism – can be summed up as follows:

Autism doesn’t end at 18 and there are Autistic adults.

In online forums the focus is often “my eight-year-old just got diagnosed and…” and in the majority parents are looking for advice from experts or other parents, but rarely Autistic adults.  It’s a reflection of societal stigma’s about Autism, that we cannot be adult or expert in anything, like we are permanently locked in and viewed as inept children.  You only have to read a dozen or so threads, to assess discussions biased towards “cures” (often subtly) and see language of half-hearted acceptance at best.  We have a long way to go.

In fact, we are often shouted down when critical of therapeutic approaches that did us harm or weren’t helpful particularly if that therapy is the current flavour of the month.  Advocating for a space for Autistic adulthood and it’s expertise is something many adult Autistic advocates are regularly presented with.  Autistic author Yenn Purkis does it particularly well and has discussed this in their blog and articles.

One of the most concerning things is the lack of asking the person with Autism in a way we can fully engage with the questions – and this impacts on our ability to manage the diagnostic pathway.  So many questions in online forums that should be answered with “have you asked your child first?”  *People will jump up and down and say “but non-verbal”.  Non-verbal does not mean non-communication or non-capable.  We need to stop equating the two and learn to work with Autistic children and adults find ways to communicate, not just assume they can’t. This goes for all children generally! 

Getting towards diagnosis as an adult is tough.  Here’s some thoughts on the last couple of decades from a structural perspective on why that is:

Gender Bias, GP’s and Anti-D’s

General Practitioners (GP’s) are overloaded today with health concerns that once would have been the domain of specialists as successive governments have stripped back Medicare.  Specialist appointments are more expensive than ever with more than one million Australians unable to afford out of pocket expenses and people tending to rely on GP’s more than ever, rather than go to a specialist.

If you live in a rural or remote area you’ll struggle to access a specialist and there is an oversupply of doctors in city areas.  For me, I had lived in rural and remote areas for fifteen years and often had psychologists managing me without a detailed diagnosis on the basis that they knew I wouldn’t be able to access one or that it would be too expensive.  So you could say I was “informally diagnosed” for a while. It could be argued that the freezing of increases to Medicare since 2013, combined with gender bias and lack of specialist services have driven much of this disparity.

I have become very disheartened in the last year and have grappled with accepting who I am and fell into what I call the “GP’s and the Anti-D” trend of the last thirty years (particularly for women). But often we are not neurotic females, we are not given a good hearing to be understood; the way Autism manifests in women is different because we women are trained from birth to do what we can to fit in rather than stand out.

For a while I tried anti-depressants when on the move to Melbourne at the suggestion of my GP in Alice Springs (and I have used them sporadically over the years with limited effect).  I knew it was going to be near impossible to get a detailed diagnosis in Alice Springs and seeking more expertise would take years (waiting lists for visiting specialists) and cost thousands.  So I took the wee chemical beasties for a few weeks and after settling into Melbourne and now haven’t been on them since January.  They don’t work well for me, but for others they might.  I’ve since found other strategies for managing social anxiety (which is not depression).

Put simply, clients come to GP’s with undiagnosed Autism and what gets noticed in 15 minutes are the complex mental health issues that often go with the social exclusion experienced and stigma of being Autistic.  We end up rapidly on anti-depressants for a variety of reasons because 15 minutes with a GP (even with a relationship of several years) is not the best path to a diagnosis.

Plus we already know that gendered medical bias is a thing – so there’s that and the evidence base for this is growing.  So if you identify as a woman that compounds the issues.  You are more likely to be misdiagnosed with a mental health condition than you are to be referred to assessment for Autism.

I attribute some of this to the fact that mental health services are so stripped back by successive governments that full diagnosis comes only with extreme expense or admission to psychiatric hospital. A great deal of people who may be undiagnosed ASD are struggling on because neither of those options are practical, safe or even possible.

In the last couple of decades General Practitioners are being placed in unenviable position of managing the end game of this punishing and stigmatising austerity.  They cannot be expected to diagnose complex issues and yet are managing these by proxy and suffering more burn out, stress and mental health issues themselves.

I decided to go off Anti-D’s after a few weeks and set about changing my life, instead of going around in circles. I’ve just about gone broke trying to manage this, until a fortunate windfall of $4000 via a complaints process came my way, paying for speech therapy, psychology and part of my service dog’s training and accreditation.  Already half way through the detailed diagnosis and already it has fundamentally changed my life.

There’s also a big difference between depression and Autistic anxiety/trauma and anti-depressants are just one part of this and may or may not be the right course of action. The levels of trauma Autistic people experience in a world designed for neurotypical people needs a much closer look than a visit to the GP will get us.

So if you are undiagnosed and struggling…off you go to get a Mental Health Care plan and see a psychologist – but it won’t cover your assessment which is worth anywhere between $2000 and $4000.  So you put off assessment and seek cognitive behaviour therapy (CBT), which never quite cuts it because you know – you don’t have the road map that a decent ASD assessment gives you.

But even the bare minimum of CBT on a mental health care plan, on average over and above rebates, is worth around $120+ an hour.  The reality is to stay well most people really need once a fortnight a one hour + session, that’s 26 a year and Medicare gets them 6 x 30-50 minutes.  If you have private health you’d be lucky to get another 6.  If you can afford private health insurance, which for many people the costs outweigh the benefits.  So another 12+ at around $280 an hour.  So let’s say, even with some partially funded visits (Medicare and private health), you’re still looking at around $5000 per annum – which is not a small amount, particularly if, like many on the spectrum, you have other co-occurring conditions.

Not so long along ago it was ten visits on a mental health care plan and fully covered, which reduced costs to about half that.  Psychology practices are high risk and complex services to provide, the issue is not with their rates, but with the lack of government support for mental health services compared to other health conditions.

So now, you can expect to spend thousands of dollars for mental health services that don’t fully support you as an undiagnosed ASD adult and the health problems pile up.

What I find fascinating about the constant watering down of Medicare by successive governments is that these governments are also anti-welfare, which is a contradiction in and of itself.  Poverty is not a disease, but it is often caused by disease or ill health.

I’m Autistic and when a bureaucrat says this is good economic logic, this punishing of people for things they cannot control – I think that’s the most bizarre human logic ever.

Can we stop calling it “economic logic” and call it what it is – late stage capitalist gaslighting?

So here are some of the hurdles to getting a proper diagnosis for Adults on the spectrum:

  • Gender bias in medicine that puts us on the mentally ill bandwagon as the primary condition, instead of it being secondary to Autism
  • Stresses placed on the medical profession (particularly GP’s) to be all things to all people are unfair and potentially dangerous, particularly when their patients can’t access specialist help
  • Availability/cost of specialist diagnosis in rural and remote areas
  • General cost and availability of specialist diagnosis
  • Rising out-of-pocket expenses and freezing of Medicare rebates (check out the extensive 2018 report here)
  • The combined impact of the above increases the chances of regular periods of trying to cope with poverty and increased the ill heath impacts…and we are trapped in a cycle.

So when you can’t work because you can’t afford the right diagnosis to access the right health care and even then it’s too expensive where do you end up? On welfare for short or prolonged periods and below the accepted poverty line (check out the latest poverty line figures for December 2018).

For women, as we age, these periods of incapacity get longer and because of this we are now one of the most at risk groups for homelessness in Australia. I wonder how many on the streets are undiagnosed women with Autism that have had to follow a similar convoluted path of misdiagnosis?

*Note, I haven’t comment on childhood diagnosis cost and complications.  I am sure they are as equally problematic.  This blog post is about the fact that adults with Autism are treated almost like the unicorns in the medical world – we are to be debunked first and witnessed verified later. It’s time we were heard, not dismissed. I also need to acknowledge and ensure I indicate this includes trans women and that this medical bias and discrimination is just as present and often worse for trans people.  I myself am non-binary and in the process of coming out as such.

 

Unlearning with Pepper

So after three years of thinking about this I’ve decided to take advice about a service dog.  This past two years has been an exercise in unlearning.  Unlearning ableism.

I looked at various options and decided to follow the MindDog process; whereby you can select your own dog and work with the trainer to train that dog to be accredited.

I sort out the services of Laura Mundy who is an accredited MindDog trainer and psychologist.  We discussed what personality dog I would need to seek based on what I wanted to get from the relationship with the dog.

During my teen years I had a horse who I credit with saving my life.  Another myth about Autistic people is that we don’t have empathy.  I have trouble reading other people’s hints, sarcasm and passive aggression as I have low cognitive empathy, but I have enormous amounts of effective empathy.  I am affected by high emotion settings but struggle to process why.

My response as a child was to freeze, as an adult it is a meltdown (which was often confused with a panic attack). My horse used to calmly help me get rid of that excess emotion when we went riding alone. I loved just being with her, away from people, sitting in a quiet spot in the bush.

Laura recommended a greyhound because of this history and gave me a list of traits to look for in a rescue greyhound.  An important part of this process is the right bond between dog and human.  The next step is to start the MindDog accreditation process along with training and assessment from Laura.

The idea was to find a dog that will encourage me to find the least crowded ways of walking by pausing and making me slow down, slowing my responses to my anxiety. A chilled out dog, but a dog that can also understand that my anxiety comes from sensory overload and how to help me deal with that. Slow down Jacci, walk another way. When I am anxious generally, the dog will take my focus away from the anxiety inside of me.

img_2880.jpgI was approved at two services and then went to look at Pepper on Sunday the 24th February 2019 (I won’t forget this date) at the Baxter office of Gap Greyhound Adoption Program Victoria.

I was super anxious as she approached me, but was holding back tears and pretending to be okay.  She just knew.

She walked up to me and pushed her head into my legs and leaned against me really affectionately.

I wanted to cry, but the urge to cry fell away and I felt safer.

It was amazing and so reminded me of my horse that used to put her forehead on my chest and gently press.  Note: yes, she is thin.  There are efforts underway to improve her weight, she was a racing breeder and she has gained a bit in the last two weeks already. 

I picked her up and brought her home early Saturday the 2nd of March and in just 24 hours I already feel different and we are getting along amazingly well.  Like I can do this.  Like I am not less for being who I am.

She seems to know when to leave me alone and when to intervene.  I often feel dreadful anxiety in the mornings just getting out of bed.  This morning she refused to budge until I had processed that with doggo cuddles.  Only when I felt better did she go “come on let’s go”. img_2916

With Pepper I am about to shed years of learned shame.  But this shame doesn’t come from nowhere.  It comes from my early life and how the world (and the people around me) spoke of anyone with a disability.

So many times I’ve resisted so many therapies and simple steps I could take to make my life better. I hid and suppressed things that I now know are part of me and not things to be ashamed of. Because deep down, despite my protestations otherwise, I thought I was “broken” and was trying to make myself like everyone else.

I didn’t want to be pitied and cooed over like my Dad was.  I couldn’t imagine anything worse, but that was happened to my father with his chronic illness.

Then there was the martyrdom and burden stories associated with his care and the narratives about how stoic and brave he was.  To me he was just Dad and I knew he felt like a burden enough without these dramatic stories circulating around him.  He would hide symptoms of his illness to prevent the drama it would create around him, something that didn’t help with the chronic heart condition he had.

To other members of the family telling these stories appeared to give them hero status in a 1970’s and 80’s world were carers “had to put up with a lot”.  The culture of ableism was high during this period, without any real discussion about what the person on the other end of that caring felt or thought or needed.

I know I did not want to be the centre of attention for being broken.  That was the family story.  So I pushed on through and at times, and sometimes did break myself.

I am no longer ashamed of my synaesthesia and the anxiety it can cause me.  I have a clearer picture of how I internalised that ableism in the past and how I can change it now.

Conversations with optometrists are coming back to me with new relevance.  They would do extra periphery vision testing because I would describe what I experience.  How artificial lights exhaust me, or how I experience the world like I am under a spotlight. How nighttime street lighting makes me feel as though I am in a tunnel.

Early on in my life wearing glasses I stopped telling the truth about the swirling but almost translucent colours (it varies in intensity) that permeate my vision moving in time to the sounds around me.

When a psychologist suggested wearing sunglasses to me and that I wear them anytime I am not at a computer, I balked.  Now I do, and the improvement in my quality of life is rapidly improving, because I am not so exhausted mentally.

I now know that when I talk about the tastes in my mouth when I touch things, I don’t need another test for diabetes.  I know understand how I stim (see this great video on this) and what it means for me, but that’s another whole blog entry.  Check out Agony Auties great video on stimming and quiet hands and shutdown.  My experience is very similar to hers.

Must be time for a walk to the beach with Pepper.  Yeah, that sounds like a plan.