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.
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..
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,
“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,
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
About 4 years ago I went into the largest bookstore in the city and took my very first tentative steps into looking for books about Autism but more specifically by Autistic authors and hopefully some by Autistic women.
I left disappointed and empty handed.
The only Autistic who seemed “allowed” to write books to sell was Temple Grandin. I thought, “there has to be so many more of out there? where are we?
I found us online.
2 years ago I went back to the bookstore and it was marginally better but it was also worse. For the scant few books that were at least Autistic friendly were 5 more about diets and cures and strategies.
This time I pulled an employee and said, “this store needs to do better than these” and we had a great talk. Guess what? She told me she has always felt different.
We just seem to find each other when we turn our own lights on 🙂
Yesterday I got a message from a friend who is also Autistic. It was an inquiry for my mailing address. I wondered what he was sending me.
Booksbooksbooksbooksbooks! There’s books in there! I love books! Happiness and flappiness!!
And I love that I was instructed to handle with care. Oh yes, I won’t even dog-ear a book.
Want to see what I got? I can hardly believe how fortunate I am to have these.
I saw this one first. Being orange it caught my eye but the name also jumped out at me too.
In the early days of my self acceptance and advocacy journey Sparrow told me some things that I’ve never forgotten and hold dear to my heart. I have such respect and affection for Sparrow. I am grateful to have the opportunity to get to see her through her own words and learn more about the fabric of her life.
I’ve been following along on Landon’s Facebook page : The Autcast, for a few years now. I was so excited to see this book amongst such treasures. And I needed it because last night I had an entry mostly written and this a huge wave of self-doubt came over me and I shelved it.
Just reading the title of the book, I love being my own Autistic self…it’s a powerful mantra.
Here’s part of what I didn’t publish last night:
I know I am Autistic. I know it deep down in my bones. I recall the moment it washed over me. (I just got chills as I typed that) It was everything all at once and all at once it was everything.
In rapid fire — thing after memory after experience after every question I ever had – was answered.
Thank you so much Alex. I am grateful for your generosity but always more importantly, for your friendship.
I am so excited to read our stories. I hope one day that my book arrives as a gift to someone’s home and makes them this happy.
Please consider supporting all of these writers. All these books are for sale and I’ve linked to where you can get them. Thanks!
Day 121. This entry is a Through the Looking Glass kind of entry. It’s about the day my “how people really see us” Autistic bubble burst.
(picture of words in cursive writing in blue pen that say) It’s a burden to have autistic child!
It’s taken me over a week to write about that little quote up there, and how I came to be sitting in an audience and hearing it and then madly scribbling it on a piece of paper. But I am more ready now and I feel it’s very important that people know about situations like these so we can do better.
I’ve been attending more and more events outside of my home related to Autism, both for advocacy and to increase my knowledge. A few months ago I went to a fantastic talk about Autism and anxiety. The speaker did a wonderful job. I only felt like I needed to bring up 2 things with them at the end.
When I looked at the event description, I was a bit nervous but I proudly exclaimed on facebook that I’d be introducing the speaker to some other words, like ableism and co-occurring.
Here’s some of the speakers bio:
I want to address something before I continue.
What I am going to describe is MY experience and how I handle it is MY business and mine alone. While it’s important to talk about this event I am working very closely with the organizers and I want an opportunity to meet with the Doctor. I won’t get that if others decide to do my bidding for me.
I have zero interest in bringing any undue stress or harm to the event planners or the speaker. I don’t work that way. This is a matter of growing pains. Even 5 years ago Autistics didn’t show up at talks like I went to. There was no one there to stand up and say, hey, this is not right.
I did that. But it came at a heavy price, to me.
I have no idea which condition to tag it with exactly. But it took me a long time to get my drivers license and I am severely restricted in what I can do. My sense of direction is non-existent, my ability to process driving in anything other than a small town, is limited. I have dyslexia and dyspraxia and I know they are part of the reason why.
But I wanted to drive myself to the event. So I searched maps, talked to people, searched more maps, wrote down directions and programmed it into my GPS. I’ve gone to this part of the Provinces 1000’s of times, but that makes no difference to my brain. Every time is the 1st as far as it’s concerned.
I arrived a couple of minutes late but got myself settled into listening to what was going on.
It went downhill, fast.
15 minutes in and hearing how, “Autistic kids don’t get jokes” several times and then this gem.
(picture of words in cursive writing in blue pen that say) Obsessive non-productive interests.
my hand flew up in the air. The speaker looked to me and I turned and looked to the crowd – which was students and parents and me. I think I saw 1 other Autistic person there.
“we get jokes. I’m an Autistic adult and I want you to know that we get jokes and even tell them. And just because our interests make no sense to you, doesn’t make them non-productive. They are certainly productive and have value to us”
I went on and spoke about how through accommodation and support we can and do live very fulfilling lives. I addressed the crowd. Not the speaker.
Then I turned around, smiled and told him I was done. (spoiler alert, done, for now)
He was a man of many slides. He went through them so fast that I could barely get time to write anything down or take pictures to remember by.
“Autistic Rigidity” ohh, fancy. “disruptive behaviours” Well what a big bag of fun he makes us sound like. (this was a theme for the talk.)
I like how this picture of one of his slides is blurry. Because that’s what was happening to me with each ableist, stigmatizing, wrong, outdated thing he said. I could feel myself slipping into either shutdown or meltdown.
I shifted in my seat, a lot. I let myself stim and be seen. I was already out, I told them I was Autistic. I wasn’t going to hide.
For the next 45 minutes I tried my very best to somehow see past the language and find something to take from this talk that would have been helpful to an actual autistic person. I sat and thought about the information these students were taking in, and the parents. It was a “through the looking glass” experience. Like when you overhear your parents talking about you when they think you can’t hear them or can’t find out.
(Here’s where awareness meets acceptance. These words, even insisted as true, have actual consequences for real people)
I’ve never experienced anything quite like it before and I hope to never again. That’s the most shocking part of this for me. That despite all my advocating I still didn’t have the full realization of just how backwards and downright dangerous the language around Autistic people and Autism, are.
It leaves us vulnerable in public and private situations and open to any number of abuses.
My remoteness (meaning how little I go out or interact with others) and my skin being white are the biggest reasons for this. My white skin gives me privilege and so I am not exposed to the same serious situations that people of colour, are.
So, I sat there a room full of people were being handed Auti$m $peaks as a source of data. 600% increase!! screamed out the graphic. I scribbled it down on my paper. I could barely write. I was struggling.
(picture of words in cursive writing in blue pen that say) Autism Speaks propaganda 600% rise – graphic
And if dragging them out wasn’t enough, then out came the “RainMan” slide. That was as part of his talk about siblings. By now you’re not going to find too many Autistic people happy with the constant measurement of who we are, and aren’t, against that damn movie. Let it go.
It’s a movie, right?
When he got to talking about his patients, all examples were male, obese, and had to mention poop.
He talked about how Autistic people were obese because of meds and not being able to control ourselves. He waxed on about one young lad who cried to him about not being able to control why he needed to eat all the time. How the patient was upset and couldn’t understand why.
I cried about the way he talked about him. It brought back memories of my childhood.
I remembered hiding my food in walls (yes, in the walls through holes I found. I shoved the food in there starting when I was 5) because I couldn’t communicate why I couldn’t eat it. And I remembered hiding me drinking vinegar. Eating Vicks. Eating entire containers of mayonnaise. I couldn’t understand why I was doing it then. I do now.
“I know why” I said loud enough for those around me to hear. “I know”
Talk to Autistic adults and they can tell you too. We’re roadmaps to parents of Autistic children. At least we should be.
So halfway into a 2 hour talk it hit a crescendo for me when the, “There are medications to treat co-morbid conditions but unfortunately there is no cure for ASD”
and I couldn’t tell you anything he said after that. I lost feeling in my hands. I stood up but dropped everything, (see: no feeling in hands) And as I headed toward the door I got very vocal about how that made me feel.
It came out in fragments. It came out in the scripts I had prepared myself with. It came out….
I, came out.
I gave the entire room my full name when I told the speaker if he wanted to contact an actual autistic person so he could learn something.
I asked him how he thought it might feel to be spoken about in such ways?
To be viewed as burdens. To be the reasons our mothers are depressed. To be constantly reduced to what we do with out toilet habits. To be a sum total of perceived deficits?
I asked if it mattered that we wouldn’t want to be cured. The room did indeed hear the word ableist. But not how I envisioned it happening.
Then I got angry. By then I was by the door and knew it was time to get on the other side of it. So I did.
I was walking so fast that when I stopped, I was lost.
This was taken 2 days after the event. I almost always shut down within 72 hours of something big like that happening. My 6 day old baby Chinchilla died the day before the talk. So it’s been, a lot.
When I started Autistic Me 2016 I talked abut being open and raw at times. That’s why I’ve taken pictures, like these. It’s time to end the stigma.
So I was lost. But I was in a place where it was safe to be lost. I found a seat and worked on slowing my breathing. I was in a full panic attack now.
I was right about being in a safe place because very quickly some of the people associated with the talk came to check on me. I feel so very supported. There’s been constant contact since. There are changes being made.
Even 5 years ago Autistics weren’t at events like this. So there’s a learning curve. There’s a total willingness all around to take that curve on. As I said at the beginning of this — this is my issue to deal with.
I’ve talked about it here for several reasons.
This is a place where I’ve committed to the best of my ability to share quite personal looks into my life. I have been writing on line for almost 20 years and keeping a diary offline in one way or another since I was a kid. I’m a writer. I work stuff out this way.
It’s the last day of April which is a month of hell for so many Autistic people and their allies. (I feel like this might not be the correct word. I am in a lot of pain at the moment. I’m waiting for a Nurse to call me back) I want people to know about these experiences. It’s time to move forward past outdated information and stop looking to organizations that aren’t doing the right thing by the people they claim to represent.
I don’t know about you, but I sure am happy to see May 1st.
Oh, that thing about Autistic people not getting jokes.
YOU might want to think again.
I welcome you to the first nonverbal talk show hosted by me, Carly Fleischmann and my first interview with…wait for it…. Channing Tatum