~ an Experi(ence)ment that steps through the looking glass of an Autistic adult

Autistic Me, Daily

A post a day for the entire year. Welcome to my Experi(ence)ment.
Oct
4

Day 278 – Autistic Shutdown. A look inside one of mine and how to help.

Just over 2 weeks ago I was sitting in a board room at the ALT Hotel  in Toronto at the 2nd face-to-face meeting for the Autistic self-advocates who are part of the Canadian Autism Partnership Project. With the amazing support of a small army of women who I’ve come to love and open up to, I did something I said was 100 million percent impossible ever.

I got on a plane and flew to get to this important meeting.  And the Universe said, okay kid, here’s something that let’s you know you’ve got this and you’re in the right place and it’s going to be okay.

I learned a lot on my trip and had quite a harrowing experience the one night, but I arrived home safely and everything seemed to be okay.

So 2 weeks later I thought I was past having some kind of meltdown or shutdown or even seizure, from the extraordinary amount of physical, emotional, mental, processing involved with such an event.

reliefvalve_mb_aug19_16_gs5

I guess I should have checked to see if the light was on so the valve was open! (c) Patricia George All Rights Reserved

I was wrong. This is so noted so I don’t repeat it. What goes up in a plane and comes down in a plane may not truly land till weeks later.

I just wasn’t ‘with it’ all day this past Sunday. My written communication wasn’t working out very well nor was my comprehension of others written words. I was only successful in one email and then it took me forever to write it. My (I just typed Wy – you are SO funny dyslexia…not :/ ) words both written and spoken felt heavy and laboured.

I had a plan for Sunday but it wasn’t working out. I wanted to get a pair of sneakers and stores close early here on Sundays. And I needed to get groceries. I was going alone so it was me time.

But I felt like I was walking uphill while going backwards. As the day went on things just seemed to get harder and harder.

When I finally got to my one destination it was later than I wanted to be. From the minute I walked in I was confused. I couldn’t seem to get things ordered in my mind. Even the drive was difficult. I had to get off the 100 series Highway and take the ‘old way‘ so I could drive slower and not upset anyone.

The longer I was in the store the worse the confusion and heaviness got. There were so many flashing lights, so many strobing fluorescent lights. The beeps and ringing and clicking and sounds of carts touching each other – the music blaring, the smells. Was I at a rave or Walmart?

Took this in August while sitting on a bench in Walmart. I was teetering on overload so I sat down for a few minutes and immediately noticed the reflection of the lights, which cause me such overload, in my glasses

Took this in august while sitting on a bench in Walmart. I was teetering on overload so I sat down for a few minutes and immediately noticed the reflection of the lights, which cause me such overload, in my glasses. (c) Patricia George All Rights Reserved

I got lost in the store for a while. Went around several times. Could recognize some things but the information wasn’t staying at all. Information was too heavy and was just falling away from me. I couldn’t seem to keep a hold of it for long.

I paid but barely spoke. I was speaking in my head but the words, heavy too, weren’t making their way out.

The drive to the next location was apparently the ‘too much‘ for my brain. As I pulled in an entrance I never come through I felt complicated thought process come to a stop in my brain.

Light.

That’s all I could think as the car mostly drove itself into the parking spot under one of the giant lights that illuminate large areas.

Light. I opened my mouth to say the word and nothing came out but the dust of the intention. Where did my words go?

Then I stopped thinking. My brain just ground to a complete halt.

Early morning sun makes for a striking image through my bathroom blinds, making my rose bush seem like it's glowing. (c) Patricia George All Rights Reserved

Early morning sun makes for a striking image through my bathroom blinds, making my rose bush seem like it’s glowing. (c) Patricia George All Rights Reserved

For the next 1/2 hour I first just sat, starring, and things in focus bled away into geometric shapes and patterns. As my senses each suspended their usual activity I stopped feeling temperature, I stopped understanding the sounds around me. Voices became muffled then they became music notes that I couldn’t read and they floated away. The banging of cars doors read to me as hitting a buoy in a stormy ocean.

I’d open my eyes for a moment and I’d see human shaped figures pass by. Were they looking at me?

My eyes would close again. It was what I imagine quicksand might be like.

Why can’t I move? I asked myself. This is foolish I can move, I can talk…and I’d shift slightly in my seat and the words were so loud in my head I convinced myself I said them out loud. Just get out of the car Patricia, just go over there and go into the store and…..

Who knew a steering wheel would be comfortable enough to sleep on? I kept finding out it is totally is as I’d nod in and out. Being both Epileptic and Autistic I am also seeing that there’s a fair amount in common between seizures and shutdowns for me – particularly the postictal phase. After I have a seizure I just shut right down. I go into a deep sleep instantly, snoring and everything.

I shutdown in that parking lot and just like after a seizure, it isn’t something that you can just overcome if you push hard enough. Quite the opposite, in fact.

My eyes open again and the word light reappears. Light. Oh, I see, there is a flashing stop light in the distance. But it’s dripping down the windshield, how can that be!?

It’s raining and I notice the beautiful patterns the drops are making as they fracture the many lights surrounding me in an ever moving world. The flashing stop light turns to green and my head turns to watch the new colour as it runs down my windshield. With so much of my processing system off-line it allows for what still is to experience the world in a very unique way.

Taken in the Spring but very much like what I was seeing as I sat in the car and waited for my brain to boot back up :) I love light and shadows and patterns.

Taken in the Spring but very much like what I was seeing as I sat in the car and waited for my brain to boot back up 🙂 I love light and shadows and patterns. (c) Patricia George All Rights Reserved

More and more words come back to me but they are still in my head only. I start to be able to make sense of the things I am seeing around me. The cars, a white truck, the entrance to the store I should have been in, how long ago? A glance at the clock tells me nothing. There is no concept of time in a shutdown.

When I finally get out of the car I notice it is parked completely crooked. Sill in my space, but crooked. I laugh to myself about how symbolic I think that is.

I sneak into the store like an addict on a week-long binge. At least that’s what I feel like. First person I come across is a security guard. Act normal Patricia, act normal…WTF is normal?

I hide from people, I peek around corners to see if there’s anyone in the isle. I wait till they leave before I try to make sense of the 1,416 mustard’s. Why can’t there just be you know, mustard? I daydream of a store that carries only one choice of everything.

The cashier doesn’t want to talk which works for me because it seems only a squeak wants to come out. I watch as she has to manually ring in most of my purchase because the scanner doesn’t work. I’d normally make a joke about something like that but I just stand there like a giant blob.

I get the groceries finally loaded into the car and stand there and try very hard to work out if I want to walk the cart back to the store or to the cart corral. I stand there way too long trying to make that decision. I just want to teleport to home.

As I am walking the cart to the corral a man appears out of nowhere and says words to me but I can’t understand them. Panic starts to rise. I can’t talk to even ask what he said but thankfully he motioned to the cart and then to the corral. I guess he is offering to take the cart and I squeak out, “thank you” At least I hope that’s what I said and I also hope that’s what he was offering.

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(c) Patricia George All Rights Reserved

The ride home is difficult. I get off the fast highway again and opt for the curvier, slower road.

When I got to the driveway I was exhausted. It took me 15 minutes to get out of the car.

I didn’t even finish unpacking the groceries. I sat on the couch and except to go to the bathroom 2 times I stayed there for almost 9 hours.

I could talk more yesterday but I just didn’t seem to want to. And I’m spending a lot of time in silence, well, silence meaning no TV/radio etc on. Days like these I wish I could go underground a few hundred feet and just sit in silence and be wrapped in the tightest blanket and just…be.

I wrote all this out for a few reasons. I want to remember it all being the biggest followed by hoping it can be of some use to someone else. And lastly, I think by sharing this I can help show why functioning labels are so harmful and not useful for actually Autistic people.

It wouldn’t have mattered who might have knocked on my car window Sunday night, I would not have been able to answer them. All the things that people want to label me high functioning for were failing me. I was not able to function in a way expected of me but how I’ve trained myself to fit in means most people aren’t truly understanding the scope of this for me.

Part of what held me back from flying is the mindset that if I did something once I must be able to do it again. I held back so that I could reserve the right to my no.

This is how I’ve come to understand that the Autism Spectrum is more of a continuum and not linear. That an Autistic person can present where others want to use the functioning label terms – low functioning and high functioning – in the same hour and across an entire lifetime.

I see this is a big factor for the block to seeing Autism as Autistic people and that’s it’s our Neurology not just a condition. And that believing that it goes from and to extremes but those worlds don’t cross.  They do and I am like your child in ways that I think could be really helpful I those blocks could come down.

So what could have someone done had they come across me in the parking lot and needing to communicate with me while I’m shutdown?

  • Don’t call the Police. Even with the privilege of my white skin, don’t do that. Police are not properly trained to deal with Autistic people or disabled people. It doesn’t end well for us a lot of the time. Anything that puts me in danger of being tazed literally puts my life at danger. Epilepsy and tazers aren’t friends.
  • See if you can find a place that is less overwhelming to help me begin to recover from the overload I am experiencing.
  • Try asking if I’d like to text if this is an available option. Even when verbal, texting and emailing are preferred ways for many Autistic people to communicate.
  • Ask if you can call/text a friend or family member for me.
  • Ask if I’d like you to stay with me and let me know you don’t mind doing it quietly. Any pressure to be verbal during a shutdown isn’t going to go well.

Remember how vulnerable we are in these situations to people who can’t, don’t or won’t understand. Your goal is to create to the best of your ability a safe and quiet environment for the person. And make sure no one is filming us if this is happening in public or we both might end up inspiration porn!

I’ve only got a few weeks till I travel to Montreal for another CAPP meeting. I’ve learned SO much from my first ever flying experience and that will help this next one go more smoothly. I need to do more to decompress and process. I think writing this all out will help with that.

I had to wait for this shot and it would only last a few seconds till you had to wait for the next chance. Can you tell what's happening in this shot? (c) Patricia George - All Rights Reserved

I had to wait for this shot and it would only last a few seconds till you had to wait for the next chance. Can you tell what’s happening in this shot? (c) Patricia George – All Rights Reserved

With acceptance, patience and willingness to be open to listening to those who have the lived experience I know it can make a huge difference in the lives of Autistic people and our family and friends. All of those things helped get me to Toronto where I got to spend time with my Neuro-Siblings.

I don’t use the word siblings lightly. Autistic people need to be around each other. We help give each other the strength we need to get through like no one else can give us. My life has never changed in such positive ways until I started being around other Autistic people. We give each other the language needed to communicate in ways that others might hear us. We validate each other and we really need that to have a chance in this world.

Even with things like shutdowns I would not ever choose to not be Autistic. There’s a level of cruelty in the fact that what has freed and empowered me is what also puts me in danger of discrimination and poor treatment. I don’t think I should be made to give up who I am to fit into others ideals of normalcy. I tried that, it doesn’t work.

Let me be, Autistic Me!

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Jul
7

Day 189 – Worlds Collide – Advocacy, my Member of Parliament and Me.

Where did that seagull come from?” asked my Member of Parliament as it stopped her in her tracks on her way to greet me.

Sitting on a shelf was a beautifully carved piece of folk art. A seagull in flight. It was quite large, pretty well gull life sized and we all admired the craftsmanship.

It apparently was new to the office.

So was I.

I was 6 years old when I saw Prime Minister Pierre Elliot Trudeau rushing through the halls of the Parliament Building in Ottawa. My Grandfather took me to see them. He thought it was important that I understood the political process even from such an early age. And I, being so unlike most other kids my age embraced the opportunity with gusto.

I only caught a glimpse of him- but it was enough to totally enchant me. To me he was a King and I was in his castle. I felt like I was now more special for even just being near all of this.

trudeau

41 years later I am standing in my Liberal MP’s office after requesting a sit down meeting. I’ve got my paperwork in a nice folder. I’m not entirely sure how to begin and I am hoping I know how to end!

A Seagull, huh? Okay Universe, we start with a carved seagull.

Autism Nova Scotia helped me out so much by giving me some material to take in a wonderful CASDA folder. So I started with a bit about me and how I came to be sitting her office as an Autistic advocate.

Then I got out the papers from the folder. I felt a bit scattered for a few moments. Thank goodness for all the preparation. I didn’t panic, I knew my scripts would mostly find me.

I talked about the work I, and my fellow Autistic advocates are doing on the CAPP Project.  How that came to be and why it is so important. I made sure she heard, at least a dozen times how the involvement and inclusion of Autistic adults is really just mandatory at the point in the game. I let her know that we are often bullied to the point of breaking when we try and add our experiences to the conversation.

Not carved seagulls - I took this on a cold Feb day in 2007

Not carved seagulls – I took this on a cold Feb day in 2007

I decided as I was writing this that I would create a separate page for the part of my talk that I typed out last night to help keep me on track and to leave with her. So if you want to read that before you continue (certainly do not have to though. No pressure or expectation about that)

It’s:

[ MP Presentation ]

Because I knew I was leaving the paperwork with her I calmed myself about how I was not reading from my paper like I thought I would. Here’s where my Grandfather’s influence shone through again. Long story short — I did a lot of public speaking for a few years in my teens/later teens through being involved In the LEO Club.

I talked about as many things as I could from my typed words. I relied a lot on me, because isn’t that the pinnacle for what I am doing? Being authentically me?

I glanced down one time and saw where I had typed out, “there is no severe Autism” and quickly found a way to bring the conversation there. It caused a reaction so I found myself spending a bit of time on that because I knew sitting there and being mostly physically abled looking and able to express myself, it is  ingrained to think “high functioning“.  I explained that I could be “severe” in 5 minutes in other circumstances. I opened up about periods of being non-verbal.  I got to explain functioning labels and their effects.

And that led me to be able to talk about ABA Therapy. I was able to relay information that while not my direct experience, it was information about it’s PTSD inducing history.  My Therapist has said in some ways I am lucky I didn’t know till later so I avoided such fates.

Flowers Inside the Rain (c) Patricia D. George-Zwicker All Rights Reserved

Flowers Inside the Rain (c) Patricia D George

She asked me what I wanted from her. It threw me, of course, it’s HUGE, it’s like, How are you? See, I had originally called because I was quite concerned about language on a proposed resolution I had read. I came into it too late though, so fair. It was not logistically possible to meet with my MP. The resolution had passed. There was a language change.

I wanted her to know Autistic adults would like to be included in the conversations and decisions that can effect us. We are such an un-tapped resource. And that the language used to describe us often forgets to include how hearing/reading would make us feel.  So I asked her to help make that change.

She gave good advice about other political routes I could take, Provincially especially. I was very grateful to be taken seriously. There is progress happening. And I am also very grateful for the experience as it is helping me grow and learn as an advocate, and a person. I thanked her for that too.

I know I wasn’t able to be as cohesive as I would have liked about the CAPP part of it. I decided to rely on the paperwork I was leaving to help with that. Allergies hit me hard the night before. I did struggle with finding words at times. But that’s who I am. Hiding myself kept me from getting involved till later in my life. The work I do on the project very much is part of each step it takes. So I should be confident in the information I left. My work can stand for itself.

I also asked 2 more things from her. I asked if a letter Autism Nova Scotia helped prepare could be delivered to Health Minister Philpott. I hoped there was an in house system to deliver such things, and there is so yes, that is going to happen! Very happy about that. I’ll add the letter to the MP Presentation page.

And this is the thing I was the most excited about being able to ask for help with. Featuring some beautiful artwork provided by Autism Nova Scotia’s Arts Program I left her some posters that have the URL for a very important survey that I am a bit late sharing. From the website…

This survey is important because CASDA and the National ASD Working Group will use the information to determine the direction of the Canadian Autism Partnership Model and to inform the business plan that will be submitted to the federal Minister of Health in November 2016.

Here’s a link to the Projects Objectives — [ Project Objectives ] to learn more.

And to the — [ SURVEY ]

I’d be ever so grateful if you’d share the link to the survey. It’s an effective way to be part of the collective voice going forward in Canada in regards to how Autistic people are treated and the services needed and where we need to focus our time and money effectively.  I truly believe in this process I am part of. It’s given me a sense of direction and purpose in my life.

Feathers Fall Around You

Feathers Fall Around You – (c) Patricia George. All Rights Reserved.

My Mom drove me to the meeting. I’ll be unpacking the layers of how important that is to me for a long time to come. As we drove and she asked me where I get this from. “You don’t get it from me” she said.

I get it from Granddad…and Nanny” I said

Granddad told me from the time I was very little that he went to war so his future children and grandchildren could be free to speak their minds, to not feel separate from the process but instead a part of it

You know Nanny never shied from speaking her mind?” both a question and a statement.

She agreed. My Grandmother didn’t suffer fools.

This is more like the life my Grandparents wanted for me. To be of service. To be kind but firm in my resolve and convictions. To be heard and to listen. To be myself and embrace that I walk the beat of my own drum. To never stop beating that drum.

I told my MP that for me, I’ve been born twice. That Tuesday in March of 1969 and the day I fully embraced being Autistic.  Diagnosis is a privilege, I told her. Self diagnosis is (for the most part) accepted within the Autistic communities. So it doesn’t have to be in a Doctors office that you have “that moment

But make no mistake, it’s indescribable except to each (Autistic) other. And then we barely have words to share with each other. It is more a knowing, a reason for the fire that burns within. It’s now the answer to that question I’ve been asked so many times…

How can you be so brave Patricia, how can you get through the things you do?

Because I am Autistic. It has taught me how. Having to go through over 4 decades trying to figure out where I  fit in gave me a depth of strength and resilience that got me this far. I’m home now. Not my planet, mind you 🙂

But at least I know I am truly not alone here anymore.

And that means everything.

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May
12

Day 132 – Spin, Spin, Spin

I hadn’t written a poem in a while and I’ve been really struggling with some things that I thought maybe I could help myself by trying this way to communicate it.

This is the longest and most personal poem I’ve ever written. And yet, unlike me, I want to share it! I even made a video to go along with it. That’s at the end of the poem.

So presenting:

Spin, Spin, Spin

When I was a child I would
spin, spin, spin
until my stomach became a hurricane.

Then without warning I’d stop,
and watch in dizzying fascination
as a distorted world skipped by.

“Hold on Patricia, hold on” I whispered

as I waited those few exhilarating,
terrifying, electrifying seconds
until the storm I created turned direction,
and my insides sloshed
like a drunken sailor on leave
with his few rations and a desperate need
to rid himself of what he’s seen.

My Grandmother would break the spell..

“Patricia!”

Where…is…she.

Head spinning.
Eyes, tracking wildly.
No, that’s a chair.

“How many times have I…”

The question lingers as I
duck and dive the answer.

It’s for naught.
Without fail I’d hear the story of
someone she knew who
lost an eye doing that.

But she knew
deep down inside
why I craved that storm.
I needed it to put out the fire.
To buy some breathing room.

I drank vinegar,
too.

“Your blood will thin out” Nanny said.

So it must.be.true.

Finally I spun my storm
a bit too far out to sea.
Down I tumbled and
landed in a crumpled heap.

Stopped by the edge of the coffee table.
Eye missed by…barely.
Yet another fable to add to the pile.
A scar shone from there for a very long time.
I have many of them, scars,
both out, and inside.

In desperation and in vain
I found more dangerous ways
to spin my storms.

Until one day –
An electrical storm,
unlike anything I’d ever seen.
For 50 minutes it ravaged my brain
and made my body shake.
I was barely a match for this one.
I accepted my certain fate.

But I came out the other side.
I heard music that no one else could hear
And it led me back.

It wasn’t a smooth landing.
I didn’t hear the announcement.
I was too busy chasing shadows
down the runway.

I’ve outrun myself now.
Looking back through a
set of eyes,
denied,
till I rode out the biggest storm.

But now I see
what I couldn’t make heads nor tails of
in my Grandmother’s living room.
Why the world buzzed and hummed
and made me press on my eyes
to block out the sun.

I spun till I made sense of it all.

But that didn’t make sense, to others
so I was told to hide.
And I went to depths a young mermaid
should never be
on her own.

and I saw things,
I shouldn’t see.

I’m not sure what this ocean is now,
that I am being tossed around in, is called.
Storm after storm —
I want out of this place.

But I can’t seem to figure out how, exactly.
Some attempts send me into stormier seas,
Some into calm places,
but those don’t last long anymore, it seems.

It shouldn’t be so hard
to let my freak flag fly
to just be me
to have my place to be free
and feel the wind on my wanting face
as I spin, spin, spin

©  Patricia George
All Rights Reserved
May 12, 2016

Day 132 of 366 Autistic Me 2016

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