#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.

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.

Consent-ability, we all have it

The recent Carly Fleischmann speaking up story demonstrates how some people still are still struggling to understand consent. CW: discussions of sexual assault.

In this patriarchal world where we use psychology to blame women, rather than face the fact our culture condones violence and we can be active agents of culture with language; some people have more issue with the word consent, than the other C words.

The other C words I mean are “colluding” with an abuser, or “condoning” the violence of an abuser.

Colluding and condoning are acts of violence by proxy.

If you haven’t been watching the news in this consent confused world; an Autistic woman and YouTuber Carly Fleischmann has spoken up about an sexual assault by her father’s male partner in a Facebook post. She’s been so frustrated with being gossiped about and accused of lying, so she’s gone public.

Her father weighs in and blames her, in one of the world’s most patronising replies ever.

Add to the usual debate about sexual misconduct the notion of disability and…
As an autistic woman, I’m super angry. I’m furiously angry.

“That’s not unusual”, I hear you say, and you’d be right, it’s common for people to blame the victim.  This is yet another demonstration of why women don’t speak up.

Her own father’s reply is effectively blaming the fact she is non-verbal.  He insinuates she isn’t clear enough.

Note the link to this text takes you to Carly’s interview YouTube series, not the articles about her speaking out, because I want the focus to shift back to her place in the world as a proficient communicator.  The issue is with her families lack of communication ability.

We all have consent-ability.  We all have the right to expect to be consenting to any sexual or sexualised behaviour.  Anyone who says differently is, no question about it, an abuser or the enabler of an abuser.

It’s the way her father weighs in. The tone of it (yes, written words have tone). The condescending tone, the not-listening tone. Even in a written reply it’s obvious.

The physical act of speaking isn’t the only way we communicate.  It isn’t primary either.   That’s why we say someone is “speaking up” when they write.

Stop measuring other people upon the bizarre measure of speech.  If that’s your only measure of any importance then music, painting, dance and any other form of communication is not valid either.  The over-emphasis on a person’s speech in discussions of disability is to ableism, what “speak English” is to racism.

I would have thought, that it would be painfully obvious that pelvis grinding any woman without consent has NOTHING to do with the fact she is non-verbal, yet that is the focus of every thing I have read today.

Her father’s response is a living demonstration of the kind of cultural “saving face” the world leaps to, when sexual misconduct occurs.  He leaps to his partner’s defence and blames Carly for not discussing the matter.  Seriously? When she has already and wasn’t heard? But even in his reply you get the picture that he’s really saying is because she is non-verbal (a picture, from a word, who’d have thought?).

So if you are going to blame anyone for being “non-verbal”, it’s this man buying into the myth making that “she lies” or that it’s a “misunderstanding”.  What’s worse he’s doing it to protect his own reputation primarily.

Which brings me to my point.  The disbelieving paternalism and tone are present in a non-verbal medium like Facebook.  And in every communication medium we should call it out.

I’m damn certain, that sexual assaulters, do not care if you are silent or otherwise, because it’s about power and control.  It’s about asserting power and control and manipulating the culture of blame the victim.

STOP.  Listen to her, however she chooses to communicate it.  Because by the time she’s gone to Facebook, she is in real danger of it happening again because she is not being heard.

As Sue Salthouse discusses, this is reality for women with disabilities, we are not heard, 40% more likely to be victims of domestic violence, with a twenty percent rate of unwanted sexual activity.

If people think Facebook is not the place for this…social media is important to the disability community.

Social media is often (but not always) our way of speaking up in a world that doesn’t want to acknowledge our humanity.

If you think calling for support on Facebook is a problem, you’re part of the silencing culture than condones violence and shames people for speaking out.

Social media and technology gets our messages out there, autonomously, without needing an able-bodied person to validate our existence by ‘approving’ our voice. Don’t you fucking dare tell us otherwise.

I’m autistic but I can be hyper-verbal. Being able to speak up hasn’t stopped me being sexually assaulted.  I can be really articulate and I can be really waffly.  Speech is a stim, I chatter when I’m anxious and that is most of the time. I appear extroverted because it’s survival technique, I am very introverted the moment I go home – and that feels natural, not a mask.

People then say I can’t be autistic because I speak and perform.  But the key word is performance.  I’ve learned this.  I had to and I could channel anxiety into speech, so I did.  But I really communicate best in writing.

You know what else 48 years of discrimination for being different has taught me?

Non-autistic people often say one thing and do another.  Their facial expressions don’t match the words and after years of noticing this, we know when you are lying.

Many of us have had to learn what these expressions mean.  I catalogued them for years, studying anthropology and looking at language.  But I have a logical understanding and the illogic of non-Autistic “saving face” baffles me still.  Stop trying to save face, it’s shit behaviour.

I am tired of experiencing the violence of “say and not do” or “not do and say”.  Sure, you might change your mind, but just say so…and surprise, surprise, mean it when you do.

Carly’s father’s reply is either classic gaslighting or dismissing her experience at the very least.  Either way it’s not good.

My Autistic sisters who are non-verbal are enormously valuable communicators.  The able-bodied world is just not listening, just not paying attention.  Please stop this monstrous measuring of their worth by a deficit model.

I was sexually assaulted at work, in a way that gets described as “low level”.  While I was locking up a building and other staff and volunteers left me alone and didn’t wait for me – a man tried to force his way in, groping at my breasts and making sexual comments.

As if that wasn’t bad enough, what happened next was abhorrent.  I experienced some mocking by disbelieving colleagues who thought…wait for it…thought I wasn’t reacting enough! I was too calm.

It took everyone ounce of my courage to talk about it.  I ended up having to take 12 weeks off, was suicidal for a period of that and self-harming at one point. Because speaking up and being dismissed caused a new level of harm to me.

My attempts to have an email sent out with new security measures were ignored, I was expected to do that myself, because I “shouldn’t have been there alone”.  It wasn’t a message for everyone…just for me.  I was made fun of by people when I insisted the new system be put into place.

A complaint to a government Minister about support for workers near licensed premises and public drunkedness and the experience took nine weeks to be replied to.  I couldn’t read it by then because I was just starting to feel like counselling was scratching the surface.  I replied telling them I couldn’t read it because it would re-traumatise me.

Prior to that I’ve been raped by a partner.  On more than one occasion.  I’ve been subjected to all sorts of bullshit from family, friends and colleagues who only began to believe me when I was so affected a medical professional had to get involved.

Apparently it had to come from a medical professional, not from me.  There are so many layers of bullshit here, I just cannot express.

And people wonder why we leave our families.  This is why.  And people wonder why we are angry and lashing out at our families.  This is why.   These microaggression’s weigh heavily in accumulative value, every day.  It’s worse when it’s people who are supposed to love you.

It’s exhausting.  Watching people try and deceive us because we are Autistic and they think they can lie without consequence, that’s exhausting.  It exhausting, it’s dangerous, it’s dehumanising…need I go on?

And that doesn’t mean, when you practice honesty, that it has to be cruel in delivery, which is often what people resort to. And then some people, busy telling us to be more like them, have the nerve to call us communication impaired.

Saving face “disables” everyone. Just stop.

In Defence of Joy

There are dozens of self help gurus, books and videos telling the world to do what we love.

Maybe this is my autistic thing, but I’m puzzled why someone might need someone to tell them that.

However, the irony is that for AS youth the messaging is somewhat contradictory.

Their joy for something is reduced to an “obsession” or “special interest”.

It’s societal gaslighting.

I remember my interest in fascist regimes (prompted by watching The Sound of Music over and over again) – was looked upon as a very strange obsession. Yet knowing everything I could gave my life meaning – and JOY!

My love of language (and music) that counters hate eventually led to work in project management and political social justice fields as an anthropologist.

Is it because we are classed as different that we don’t “deserve” to have that joy fostered into skills? Is this just reserved for neurotypical adults – in the books consumed in million dollar self help industries encourage the rest of the world to do?

I was lucky to have a parent who encouraged me to follow my interests instead of what everyone else wanted for me.

Yet, because AS young people often show signs of knowing what we love so early, this seems to be detracted from by some (not all) educators and parents. Sometimes it’s because they think we don’t have room for the rest of the curriculum. Maybe the child is more important than rigid adherence to curriculum?

And yes, I do understand the importance of curriculums.

Are we meant to just go down the path of lots of general knowledge and unhappiness and not knowing our joy because then we’ll be “normal”? I reject this type of normal.

Then there is footage of youth being restrained and dragged down hallways for not conforming. This madness is not the fault of the young person with AS, but of a system trying to turn people into consumers of self help products.

If “normal” means I am meant to be searching for meaning in books written by people who’ve done what I’ve always done (found joy in focussed interests) – then isn’t that a wait of my resources and energy?

Why is there then an apparent double standard when it comes to AS young people? To anyone really?

Because I’ve looked at the books, videos and talks and they all say the same thing:

Find what gives you joy and do it. Make a career out of that joy or something related to it.

Not exactly rocket science. Often AS young people are blessed with what the self help books are selling at an early age.

Whilst I doubt that this is possible for everyone, I’m sure that aspiring to it, is not a terrible thing.

Maybe, just maybe, if we seriously created industries of joyful meaning from birth onwards – not only for marginalised AS children and people – but for everyone, the world would be a much happier, more peaceful world.

 

*I have used identity first language in the majority as is my right as an Aspie woman. I understand that some carers, experts and parents prefer to use person first language and that is their choice. However take away my autistic identity and I am not me – and I’m proud of who I am. So thus I prefer identity first language.