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.
— Steve Silberman (@stevesilberman) September 18, 2016
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.
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?
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.
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.
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.
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.
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.
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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