Function

c

I don’t work like other people work. I have energy rushes that see me fast tracking through tasks at a speed that leaves others behind. It makes me want to click my fingers at them and tell them to keep up.

I have energy dips that find me staring into the distance for days or weeks at a time. Watching the trees. Listening to birds and podcasts. Going for long walks. Missing deadlines.

This is fine. This is how it is for me.

I haven’t always felt that this is fine.

It wasn’t fine when I had to turn up in an office from Monday to Friday and work 8 hours at a desk. It worked brilliantly when I was in hyper focus, but I had to quit jobs when the staring in the distance started.

It wasn’t fine with friends, when I made a rush of plans in my energetic phase only to cancel them all the next week when my internal brakes were applied and seeing people was the last thing I wanted.

It wasn’t fine when I made myself conform to the expectations of society, which pushed me to be consistently productive and shamed me into feeling useless when I wasn’t.

It was a disaster when I tried to force myself to keep the energy rushes going, to extend the hyper focus longer and longer so that I could mirror the patterns of non-autistic people. It ended in dark days and silence and burn out.

It wasn’t helpful in the slow phases when the panic hit and I worried that I wouldn’t be able to keep up with my job, with my friends, with my internal expectations. It made me hate myself and wish that I were someone else.

This is fine. This is how it was for me.

I am letting go of the need to mirror the patterns of people whose neurology is not like mine. I can’t keep up with them. They can’t keep up with me.

I am high functioning.

I am low functioning.

I am high/low/in between functioning.

I function as I am.

I am trusting that honouring my own rhythms is the way forward.

Human

Human..jpg

Deficit thinking creeps up on you. It infiltrates the armour.

Chinks fall off from…..

Stories from ‘autism moms’ who publicly share their kids’ worst moments and amplify their fears of what their child will surely become.

‘Autism experts’ fouling up your facebook feed with urgent prescriptions for social skills training NOW or ELSE.

Acid seeps through and eats at you when….

Family ask you if you wished your child was other than he is.

Paperwork makes you write the word ‘disorder’ over and over or else there’ll be no funding for your child.

After a time your breathing gets shallower and all you see are problems everywhere.

Milestones that aren’t reached

Skills that aren’t yet learnt

Fears of what will be

Enough!

Spin. It’s all spin.

Spin for profit – do this course! Buy this thing!
Spin for hoop jumping – s q u e e z e your child into this tiny tick box and sign on the dotted line!
Spin to spread the horror story – aren’t you glad your child isn’t a monster like those ones?

I’m turning away. It had me spinning. I have truer things to focus on.

Not deficits. Nor disorders.

You won’t convince me that there’s anything wrong with him.

Human. In all its chaotic complexity.

Bitten

What starts with star charts ends with cages for our children.

I blink and in the nanosecond that my eyelids close, I see a small boy that could have been mine with bruises down the length of his body. By the time my eyes open again, the image has faded but the sadness has not.

I change gears at the stoplight and as the engine revs I hear the screams of the child who is locked in a dark room and not allowed to come out. My car moves on but my stomach is like a cauldron with acid anger bubbling and hissing.

I sleep next to my son and as we drift off my body tenses momentarily when I see a small girl cowering as she is told she is naughty and broken and useless. I dream of a twisted dystopian future where our children are locked back in institutions and left for so long that their terror and grief are silenced.

I wake and it isn’t the future I dreamt of. It’s the present and none of these horrors occurred in some family somewhere hidden from public view. They happen right in front of our eyes, everyday. In school.

In ‘posh’ private schools and ‘disadvantaged’ public schools. In ‘special’ schools and private child care centres. In the school around the corner from you. I know this because I have read the cases and heard from parents whose children enter a gauntlet every day they get dropped off at the school gate.

Autistic children are not safe in Australian schools.

They are not safe because they are not respected or understood.

They are not safe because they are seen as wicked problems too hard to solve.

They are not safe because the education system views autism as a twisted, terrible trauma that has a stink about it that can’t be cleaned up.

The stories I’ve heard and the pictures I’ve seen have bitten at me and just as soon as I have bandaged up a raw piece, another wound is opened.

There is a horror story on slow repeat in our schools that has always been there and is not looking like stopping any time soon.

The media prints the horror stories and voices are heard calling for change and reports are produced and schools are sued and nothing much has changed yet.

If parents had been found keeping their children in cages, they would most likely be facing losing their children for a time and possibly criminal charges. If schools are found doing the same, there is outrage, for a time, and then it dies down and people move on mumbling about the ‘poor teachers’.

Some of our children survive in school by bunkering down and learning how to avoid any real contact with anyone, collecting suffering that will haunt them for the rest of their lives.

Some of our children will not be tamed or toned down no matter how much you force your behaviour plans on them, use martial arts pressure points to pin them down or humiliate them until they carry a lifetime of PTSD before they even know what is stands for.

Autistic adults have open wounds that do not heal while autistic children are suffering at the hands of the education system. We are bitten. We will fight to protect our children, and your children, from the harms that are happening to them everyday in school.

What starts with star charts ends with cages for our children.

If your child with a disability has experienced neglect, bullying, mistreatment, assault, restraint or detainment in an Australian school in the last 5 years, please visit http://autisticfamilycollective.org.au/schoolrights/ and fill in the online survey. Autistic Family Collective are partnering with several other organisations in the Disability sector to gather cases of human rights abuses of children with a disability in schools to raise with the United Nations. Survey closes 20 June, 2016.

Tripping

It’s now clear to me.

I’m starting to wonder if I might be involved in the unintended process of writing a series of posts about my move from the city to the country. Which is never something that I ever imagined I’d be doing. It’s just that it’s been such a surprising experience in ways that I hadn’t anticipated.

I just went for a walk late on an autumn afternoon. I fell into thinking about the idea that in moving location, I’d fallen smack bang in the middle of my demographic. And I really hadn’t expected that to happen. I didn’t think I fit neatly in any demographic. I’m not arrogant enough to think that I’m so special that I am uniquely an outsider. I know we’re all separate from each other to some extent. It’s a human thing. I’m stating a fact that people who knew me would agree with.

I’m an outsider. There is no group I’ve ever fit well with. It’s not like it hasn’t been said by others before.

It’s not a demographic I’ve ever seen before. It’s not ‘hippy’ or ‘nerd’ or ‘posh’. Ok, some people do seem to sit on the posh end and I’ve been asked more than once if I’m ‘on acreage’, which I think is code for something but I’m not sure what yet. The demographic I’m noticing has elements of sub-groups I recognise as being loosely associated with myself, but they’ve all had some glaring difference that is too toxic for me to want to be near.

It feels as though this demographic may have travelled along a similar enough trajectory as me for long enough to have landed at some of the sub stations I’ve been to before. I don’t know what we are. But there is recognition.

It could be this loosened my usual protections because I found that my brain devoted more attention to what I was feeling and noticing and told me ‘Focus now. This is interesting’.

My peripheral vision began to recognise similarities between others and myself. The lady with the nose stud. The woman with natural hair. The mother with the barefoot children. The somewhat obscure brand of soy milk in the small supermarket. The slightly rugged look of the menfolk.

In the last week, I’ve started wearing different footwear. Some women get haircuts when they make a big change, but haircuts de-rail me, so I’m not doing that. It’s always in the footwear with me. Instead of wearing my Supra high tops (Google them, they make me feel fierce), I dug out my dusty Teva sandals. Not the ugly ones with chunky woven fabric that looks like it should be on a hammock, but the sleek black ones that are both functional and simplistic. I like them. But I never wore them in the inner city. I don’t think I care too much what people think about my appearance these days, so I didn’t avoid them because I thought people wouldn’t approve of them. Something else was going on.

They would have been just as appropriate for inner city walking as my high tops. So maybe it was some internal felt thing about who I was in that urban environment. I’m not sure yet. It’s too spirally, that thought right now, so I’m just going to keep paying attention to these pings and see where they lead.

The women in my new locale have Teva sandals too. Not the ugly ones either.

Today, I paid for my gluten free vegan pie (yeah, now you think you have me typed, don’t you?) in the organic health shop (you really haven’t though), and I took in the features of the sales person. I don’t do this often as I’m face blind and there’s no point because my brain doesn’t register the details anyway. But this time it did. She had hair like I’d like mine to be when my son detaches from my hair and is ready for it to be mine again. She had a look about her that was familiar to me in a way that felt nice. My mind said ‘she’s a bit like you might be in 5 years time’. And it still felt nice.

The moment was a bit shattered when the two women next to me started talking about both being busy with assignment marking. They were clearly in the same industry as me, and by the look of them, assuming they were also in the human services wasn’t a big stretch. I told my brain ‘I get it. And this last clue is a little obvious’.

It’s now clear to me. I fit here. I was meant to be here. A serious of very particular events nudged me here. Meeting our soul family (I have no fucking idea what that means and I don’t think I even believe in souls, but I’m using the term to try and convey the gravity that should go with that expression). My son being diagnosed as autistic. Myself being diagnosed as autistic. My husband’s pining for more rocks to climb and less humans per square metre.

I don’t believe in fate. I don’t believe in some unidentified power driving the scene. But I do believe in runs of luck. In good fortune and good timing. I’ve probably had more of these than I’m aware of, but my brain’s never driven me hard to take note of these. It’s always preferred to let them pass and to pay attention to the things that go wrong.

This time, it’s got my attention. I wonder where this trip will lead?

Shafted

We are rental scum. Our rights are trampled. We are a generation of people being SHAFTED. And I am sick of it.

I have a 27 year rental career. In that time, I’ve lived in 14 rental houses or units in two States of Australia, in cities and rural locations.

I’ve dressed up to make a good impression and joined with large groups of other prospective tenants to view a property. I’ve competed hard to ensure that I get the property over others, because that’s how it works. I’ve also lost out in bidding wars when an agent accepts offers of higher rent, even though this is illegal.

I’ve photocopied endless numbers of identification documents, imposed on friends and colleagues to be referees and waited with a sick stomach to hear if I’ve been successful in securing a house. I’ve been at risk of homelessness if the timing between leaving one property and securing another doesn’t come off right.

I’ve spent thousands in double rent and borrowed the same to come up with Bond because agents won’t transfer bonds even though there is a system set up to do this.

I’ve schmoozed, crawled and on a few occasions, begged a real estate agent to have my basic rights as a tenant upheld.

I’ve had the back yards of two houses I’ve rented bulldozed while I’ve lived there. I’ve had owners who turn up again and again without giving the proper notice and I’ve given them entry to the premises to keep them on side. I’ve had windows that won’t open or close, doors that don’t function and lived without a stove for weeks waiting for repairs.

I’ve lived through chronic mould, holes and leaks in roofs, dead animals trapped in walls, showers that don’t work, and scores of other problems that don’t get resolved. I’ve been told I must live through roof replacements, wall replacements and had countless other infringements on my rights to exclusive use of the property. I’ve spent many nights after moving day on my hands and knees scrubbing walls and floors to make sure I get my bond back.

In 27 years, I’ve never breeched an owner or real estate and I’ve always gotten my Bond back in full. I’ve worked hard to be a good tenant. Despite an excellent income, solid professional and personal references and no history of any rental mishaps, my family and I are still shafted. Despite legislation and support lines and dispute processes, here I am waiting again, in another mould riddled house with a section of back fence missing and a gutter with sharp rusted bits falling off randomly.

And here I am again waiting for agents to respond to emails, to return calls, to follow up on offers made by an owner and later rescinded and all the while I am paying a huge chunk of my income for the privilege.

I have grounds to breach this real estate and owner. But they hold all the power. If I breach, they can shaft me when I finally leave. They can make it hard to get another rental property by bad mouthing me to future agents or putting my name on the dreaded Rental baddies database, meaning I’ll never get another lease again.

Where has being a model tenant for nearly three decades got me? Nowhere good.

In that time, I’ve had just one real estate agent that I would count as someone who advocated for tenants. I felt like crying the day she left to work somewhere else because I knew the odds were that the next one would likely be mean. The overwhelming majority of agents represent the needs of the owner and think little about the people paying that owner’s mortgage.

Legislation hasn’t helped the growing number of people who spend their lifetimes renting. It doesn’t make us feel safe or confident. It doesn’t protect us from the many ways that agents and owners can shaft us.

Here I am after 27 years of renting, spending days feeling sick, waiting to hear from another agent so that I can determine whether $500 rent a week will buy me decent living conditions and some respect. I suspect that my email pleas for a speedy response and attempts to explain the discomfort of not knowing where my family will live in the near future are met with annoyance and contempt. I suspect they move about their day oblivious to the stomach cramps that are beginning to bite as stress takes a firm hold of my life.

I don’t want to be nice anymore. Nice hasn’t gotten me anywhere. Nice got me shafted.

As our country’s percentage of people who will spent their lives renting grows, something needs to be done about the huge power imbalance between those who own (often as a result of having family help them with a first deposit) and those that can’t.

We are rental scum. Our rights are trampled. We are a generation of people being shafted. And I am sick of taking it.

 

 

 

 

Ambulatory

1

I finally got myself a hamster wheel. I’ve always envied the critters that get to use these. It seems genius that they managed to get their humans to figure out they like to move constantly but don’t have enough space.

I constantly need to move. I have multiple systems involved in this urge. My limbs start getting tickly and then buzzy and then twitchy if I keep them still for more than I should. My brain blasts me with strong messages of its discomfort. Like if I don’t move NOW I’ll have to hit my head against the wall hard.

Insects start wriggling around inside my organs. Gentle at first but if I don’t move they’ll clump together and make a cement weight in my belly and I’ll have to go to bed.

There will be some kind of mini atrophy going down. My muscles will ache, my hips will fuse, my body will send strong messages that say fuck off, you were built for movement, and you’re not moving.

At the end of a day without enough movement, I’m ugly. I’m solid and set on simmer and I hate this body and I’ll have to take my mind elsewhere because it’s flush with unused energy and needs to fly.

My desk job and my autistic self hate each other.

My brain saw it all unfolding and sent me a strong urge to make a standing desk.

Thank you brain.

I rock while I work. But it’s still not enough. I need a hamster wheel.

My body and my brain sent me a strong urge to solve this problem and pay respect to the human form and all it’s capable of. So I got a treadmill.

Like the lab rats, I move all day.

My autistic self is learning. It is ambulatory.

De-networking

1

Today, I let go of Facebook and Twitter. It was a long time coming. I’d been trying to convince myself that the benefits (access to friends) were worth the costs (brain fry), but it just isn’t so.

Here’s why.

My autistic brain reads EVERYTHING. Walking down the street, I read all the words in my peripheral vision and store them in my brain space. I read the copyright warnings on DVD’s in a panic to reach the end before they disappear. I read signs, t-shirt slogans, car number plates. I absorb it all and it stacks in layers of my mind and jumps out at me while I meditate, while I fall asleep, while I’m working. It’s all in there.

I read your posts on Facebook. All of them. I read the titles of the links you post. I read about your dog, refugees, your cake recipe and the trauma in my autistic community. I don’t differentiate between any of them. Instead, my brain tells me that they are all of the same value and I must keep going until I read them all. Your picture of your dog visits me while I run. A refugee child appears in my dreams. The news of another autistic child hurt is my companion as I walk to work.

My brain matter has seemingly endless twists and curves where your stories lodge within it and lurk.

I experimented with options. I left groups, unfriended acquintances, tailored my news feed. None of it worked. Just knowing Facebook is there and I can access it meant I did.

My autistic brain on Twitter is a little like injecting speed. It’s fun. It’s a rush. It makes my jaw clench and my spine tingle. It gets FAST, convinced it has to make sense of all your hashtags and visit all your links and get to the end of the feed at which time there are more tweets so it starts all over again. I can see the data stream if I close my eyes. It glows iridescent green with different colours for hashtags. It doesn’t go to sleep. It never powers down.

It makes me anxious and cautious and a little afraid. It makes me wonder why I can’t stop checking even when I know it hurts. I love/hate it. It feels like a cigarette addiction where my brain needs a hit to make it through the day.

Your notifications trigger my dopamine and I lose control.

I know you struggle with it too. You tell me that you do. That you need to de-activate from time to time to take back your brain, to have a break from the anxiety you feel from absorbing all that information. From not having control over your choices.

I won’t miss your dog pictures. I’ll find my news elsewhere. I’m exploring other ways of keeping in touch with friends I care for. I’m subscribing to your blogs, old school style.

I’m taking back my brain and re-asserting my ability to overcome habits that hurt it. That turn its gifts into deficits.

De-activate.

Submit.

De-network.

 

Love letter to my autistic friends

1

There’s a golf ball lodged at the base of my throat and a straight jacket constricting my in breath. I can just about avoid freaking out as long as no new information infiltrates. As long as no one asks anything of me at all.

All day, I’m fed on a steady stream of nourishment via the Internet from my autistic friends. They remind me that I am not alone. At times like this, they take virtual hold of my hand and stay present with my fear and worry.

They read my long posts asking for advice in secret groups and I read theirs and we walk together down the twisty spiral staircase to the basement where it’s dark and murky and we don’t see so well.

They provide the counter weight to the constant stream of confusion that comes with being on social media.

To the pain of more news of autistic people being abused.

To the anxiousness when we worry that someone’s vague reference to something is really about us.

To the brain fog that makes it hard to make sense of everything that everyone is shouting about.

To the trauma when another picture of a refugee child invades our chest cavities and pounds our heart muscles until we sense them raw and over exposed.

It is not safe when the world assaults our boundaries. It is not safe when the virtual world that helps to remind us that we are not alone is the same one that throws stones at us.

My intestines have had enough twisting and I want a log cabin far away with a force field that repels bad news and comments that I don’t understand, and fights that I want no part of. A cabin with no seams to dig into me and no whispers in the walls. All smooth and dark and still.

We need a safer virtual space, autistic friends. One that is sectioned off from the neurotypical world so that we can go there together when the noise gets too loud.

So we can remove the bells and whistles of the world and catch our breath for a time and share out our spoons with love and hide out together until the tsunami has past.

Will you come with me to search for that place?

Burn the rulebook

1

One of the key identifiers of autistic people is that we have ‘social communication challenges’. Actually the medical language likes to call them ‘deficits’, but I maintain that my social communication style is natural to my neurology and therefore there’s nothing deficient about it.

But it does make moving through my day challenging. I need to plan out the phrases I will use in daily exchanges. Coffee orders. Trips to the post office. Stopping at the fruit shop.

There’s one place though that I have recently discovered I am mostly comfortable with communicating with others.

I am a boulderer. This means I go to a local rock climbing gym and attempt to clamber up 4.5 meter walls of fake rock unroped and on my own. And I do this beside other people who are attempting to do the same.

For the first 3 months, I spoke to no one. That’s how I roll. I watch. I listen. I turn away to avoid eye contact in case someone has that whiff of wanting to start a conversation with me.

Then something happened. It was a quiet morning with only one other person on the wall. After I made it all the way to the top on a harder climb than I’d ever done before, they said ‘well done’ when I came down.

I didn’t feel panic. I appreciated it. I wasn’t lost for words even though it was uninvited conversation. I said thanks and we got talking. I liked it. Since then, I’ve been experimenting and I’ve exchanged a few words with several people. I’ve even asked for help on a route that I couldn’t figure out. Yes, I INITIATED contact.

Why?

Because WE ONLY TALK ABOUT CLIMBING.

We don’t talk about the weather, or what work we do, or how our families are, or which friend is a bitch this week, or whatever else it is that people talk about in the name of ‘small talk’.

There are clear parameters to our conversation. There is little to no eye contact because we mostly talk while looking at the climbing wall. No one cares or comments on how people are dressed (and this happens ALL the time when neurotypical women meet up – ALL the time).

Where did my ‘social communication challenges’ go?

I didn’t go to therapy and get trained to overcome them.

I didn’t practice and practice to make eye contact so I could conceal my ‘weirdness’ and others could feel more comfortable with me.

I didn’t grow out of autism or get cleansed of heavy metals or pray to the lord or get ‘cured’.

I did none of the things we regularly do to children in the name of ‘autism treatment’.

Instead, I found somewhere full of people keen to support each other to climb better. It’s minimal contact based exclusively on shared interests in a setting that is now familiar and comfortable to me.

Here’s an idea. Instead of funnelling our autistic children into 20-40 hours of expensive intensive Early Intervention therapies designed to extinguish ‘the autism’, we should help them find their tribe, their place where they fit in as they are and can be who their brains are wired to be.

A place where their natural and preferred methods of communicating can be accepted and valued. Where they do not have to feel deficient because they are not trying to play the game with social communication rules that make no sense to them.

Burn the rulebook on communication. It doesn’t serve diversity well.

Solar Plexus

IMG_6021

I’m expanding my splines in relation to language use at the moment. I embrace the idea that people should get to call themselves what they want. I believe that people should refrain from using language that other groups commonly say are offensive to them. I’m a latecomer to the gender neutral pronoun but I’m already onboard. It took me about a week of typing ‘they’ in place of ‘her’ to do so without having to think about it anymore.

Ableist terms have been harder. I got really stuck on the whole ‘well, when I use that word, I don’t intend it that way’. And also, ‘yeah, but the word doesn’t mean that anymore’. And ok, a while back, in my head I thought ‘words are just words really, what’s all the fuss?’.

I’ve been ruminating on it though. I’ve been seeing how these words are flung about in the media. I’ve noticed how these words are being used negatively about autistic people – about autistic children. And I’ve been watching what happens in online spaces when someone drops one of these words, gets told please don’t do that, and defends their use. Others rally to their side and before you know it, we are back at ‘words are just words’.

And as the time goes by from my own realization that I am autistic, I’ve watched and asked and read and something has shifted.

When I hear those words they don’t sound the same to me now as they did 6 months ago. They don’t seem so harmless when I’ve read so many first person accounts of what is done to neurodivergent people, to disabled people. When I’ve seen how these words are used against my friends and I to invalidate our opinions. When I’ve seen how they’ve served as excuses for those that abuse us.

Now when I hear ableist words, there’s an aversion that I feel. It’s accompanied by a tiny shudder that originates from my solar plexus. You wouldn’t see it from the outside but it pings and it’s unpleasant and it makes images appear in my brain that are frightening and abhorrent. Images that take a while to go away.

So please, don’t use those words. It doesn’t matter if you didn’t mean them that way. It doesn’t matter if you think it’s all a bit too much and words are just words.

Just don’t use those words that hurt us.