idk

we-are-not-behind-or-ahead

There’s a lot that I don’t know and some that I can’t work out no matter how much I try. That’s the case for everyone I’m sure. But some of this is assumed to be stuff that I should know or be able to figure out given that I’m an adult and a ‘professional’. This can sometimes make my life and work pretty stressful and leave me feeling like a fraud.

It’s often said that autistic people have some areas that they excel in and are ahead of their peers in and other areas that they are ‘behind’ in. This experience was true of me as a child and has remained true for me as an adult. As a child, I was considered by most of my teachers to be clever, except in maths where I was accused of not trying and shamed for struggling. As an adult, I have learnt that like some other autistic people, I have dyscalculia, meaning that my brain cannot make any sense out of numbers and maths concepts and trying to feels physically uncomfortable – even painful. I must have found a way to communicate this to my teachers because I was eventually ‘excused’ from maths class at 14 years old. I have a vague memory of tears and fleeing the classroom – which I now understand as a very public meltdown.

In adulthood, it’s considered more common to hold specialised knowledge in some areas and not in others. This is a function of our jobs and a result of our life experience. For example, I don’t know how to operate a bulldozer but I do know how to conduct research. I think for this reason, we sometimes don’t understand how these differences in autistic neurology show up in adulthood.

For me, it’s like this – within my job I have some things that I don’t understand and have trouble making sense of that others expect that I can understand and make sense of. I’ll call this ‘assumed knowledge’. We may be fire fighters or garment workers or babysitters or stay at home parents or doctors and each comes with some specialised knowledge areas. All share assumed knowledge though and lacking in this will make the job sometimes impossible. For example, a fire fighter needs to understand how to operate their equipment and it will be assumed they can also follow a set of safety instructions as well. A stay at home parent can prepare food for their young children and it will be assumed that they are able to arrange a doctor appointment for their child if required. An academic (like me) will have skills in conducting research projects and teaching students and it will be assumed they are able to make sense of emails and fill in the many forms that come with the job.

Just like in math class all those years ago, not being able to demonstrate assumed knowledge feels embarrassing. Asking for help to do something that others imagine you can do – believe that you should be able to do given the skills and knowledge you demonstrate in other areas of your life – is risky. Memories of being shamed in childhood are not easily erased and it remains a fact that autistic adults experience higher rates of unemployment and are not promoted on par with non-autistics.

Like many of the things that I used to think were my own failings, I’m beginning to reassess this situation in light of what I now know about my autistic neurology. This process has me questioning the whole idea that autistics are ‘behind’ in some areas and ‘ahead’ in others. It implies we may have the ability to ‘catch up’ in those areas we find challenging and I’m just not sure this is always the case and nor should it be.

For example, no matter how hard I try to understand math, I can’t. No matter how many times I re-read a particular email from a colleague, I may never be able to make sense of it. No matter how many times I follow instructions on how to complete a particular form at work, it may remain un-doable for me. I put much more effort in trying to do the work of making sense of the stuff that doesn’t make sense to me than I do in going about the rest of my job. And yet, these things never get clearer or easier for me like many of the other tasks on the job do as you get more experience with them.

Rather than comparing our abilities to our peers and coming up ahead or behind, either in the schoolyard or the workplace, I think we should instead frame this as our unique autistic neurological signatures. For too long these comparisons with our peers have hurt autistic people. They’ve seen us ending up in special ed or enrolled in therapies as small children and held us back in the workplace as adults.

Instead, I want us to be accepted and celebrated for our beautiful autistic neurologies. Neurologies that see us travelling down a different path in a completely different way towards an entirely different place. We don’t learn in a linear, stackable, predictable pattern arriving at some destination called ‘functioning adult’. We may not share your ‘assumed knowledge’ or demonstrate your ‘adult skills’. We are disabled by trying to make ourselves function in ways that we are not best able to function in and need schools and families and workplaces to stop being so rigid and bend a little to make room for us.

We are not behind or ahead. We are autistic.

Autistic Speaking

searching-for-somewhere-safe-and-soft-to-landa-hidey-hole-to-embrace-the-numb

I’ve been pulsing with energy for 3 weeks
I had to be
I organized a fast and hard house move
I held on for the ride, whipping the power spurts to magnify them and get me through
My autistic brain whirred at high speed and here I am in my new house
Job done

I’m sucked of life
Searching for somewhere safe and soft to land
A hidey-hole to embrace the numb
I am spent of all emotion and pill hungry to slumber
My autistic brain is on screen saver and I must wait while it regenerates
Job in progress

This is how it is
This is how it works
This is why I achieve space travel at light speed
This is why even typing is too much

* This post is for Autistic Speaking Day 2016

Re-entry

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I’m recovering from a trip away, our first in over 6 years. I feel wobbly, like I’m standing on a moving dock and my internal organs are floating up and down inside me as the water shifts the ground under my feet. I’ve been sleeping long and gently holding my skull in my hands to take some of the weight off it. Re-entry has been rocky.

I know some autistic people who love travel. I like the idea of travel. I like the notion of seeing new things and learning more about a place. It turns out though that travel involves people and people involve talking and smells and sounds that cover me like cling wrap and prove difficult to untangle from.

I knew this about myself. But my son wanted to fly on a plane to see a big museum and so for his fifth birthday, we made his wish come true. He’s autistic and anxious and loves his own home, so we knew this trip would be a big bold experience for him. One that was likely to involve anxiety before, during and after. One that would be worth it when he looked back on it in years to come.

For this to be doable, careful planning was needed. This is my forte. This is how I roll. I spent hours researching every element of the trip. I started with how to get to the airport in the easiest way possible. I factored in the challenge of transitioning from the car to the terminal and paid extra for a valet service so we could literally drop the car and run. I picked a time to fly that meant we didn’t have to rush to get there in the morning and I paid for full insurance in case my boy just couldn’t get on the plane.

I packed our headphones and iPads for the plane and my husband packed all our snacks so we didn’t have to eat unfamiliar food. I chose a hotel based on being central to our two planned activities (the museum and the zoo) so we didn’t have to trek to where we needed to go. I planned one activity a day, returning to the hotel for a full afternoon of recovery each day. I pre-purchased tickets online for the zoo and researched how we would get there, making a note of the wharf the ferry left from and where we would buy our ferry ticket from.

I pre-chose all the food we would eat online and created a map with where each of the food places was and how long it would take us to walk there from the hotel. I planned every detail so that the trip away could unfold with no surprises and I was successful. Nothing unexpected happened and my son got his birthday wish.

Along the way though, the world out there has seeped inside us and we are all fragile because of it. There were smells –

Roasting flesh food stalls

Sticky perfume odors

Hotel disinfectant

 

There were sounds –

Hacking man coughs

Honking ship horns

Dinging elevators

 

There was unexpected eye contact that jarred and electrified and forced conversation with hotel staff that left us dizzy.

All of it remains on us and in us and we are holding tight while it slowly leaks away. Like air from a balloon that is too full and hard. I want to pop it and have it done with but that would mean taking to my bed while the after shock knocks me flat.

There is no external evidence that we ever left home. The suitcases were hidden away and the dirty washing cleaned within 24 hours of re-entry. Internally though, none of us are back to our normal. My son is raging and needing to take hold of his world and pound it back into its familiar shape. I am hiding and holding, knowing that time and stillness will stop the spinning and return me to my brand of equalibrium.

The trip away was a success. It was. I’m glad we did it. Our son stacked memories that may last forever. But like everything autistic people do in a non-autistic world, it was also a heavy challenge that requires a slow recovery.

Today, I will hold my skull gently for a little longer.

 

 

 

Function

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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

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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.

Ambulatory

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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

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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

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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

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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.