To Be Me – Autism Acceptance, Autistic Pride.

tobeme_poem_pic_finalI told my muse I wanted to create something special for International Autism Acceptance Day. At almost the last minute, she delivered with this piece called, “To Be Me”

This is a combination of my poetry and my (self) photography. I’m so visual that even though I write in such a way to create images in the readers head I still like the added layer of my photography to help that along.  So it’s a multi-media piece that I am very proud of – #AutisticPride (<— lots of us are proud, click and see!)

If you stick around any amount of time you’ll see how fond of circles and full circle moments I am.  I prefer to go on hikes that can be circular in nature as well as drives that don’t bring me back the same way I came, but back to the same point I started. ⊕

You’ll also see that I’m very fond of the number three!

So it made me chuckle then, to see my most recent EEG (Electroencephalographs) was literally on the 3rd Anniversary of the MRI I had after the seizures/coma/hospital stay. An EEG looks at what is happening in the brain – the activity of the brain cells. The MRI (Magnetic Resonance Imaging) uses a powerful magnetic field and radio frequency pulses. It was a deeper peek into my differently wired brain. A way to see what X-rays and CT Scans couldn’t.

I take anti-seizure medication (dilantin) and the levels have been getting lower for months and recently fallen below baseline – so I’m being sent to a new Neurologist. I’m excited about this. I intend to learn from and also teach this brain specialist.

This EEG was different in so many ways.  I’m sure I’ll keep uncovering more as I process it all and full circle moments collide into each other.

I has 29 electrodes glued to my head in various places, 2 more on my cheeks and 2 on my chest. The entire process which involved things like eyes open, eyes closed, deep breathing and strobing lights took about 2 hours.

eegwires_mar31_15_gs5

First of all, my memory loss from the seizures and coma meant I barely have any memory of the last time I did this test. I think that’s where a great deal of my fear came from — not having a script to go by.

The biggest change though besides the diagnoses of Status Epilepsy just over 3 years ago?

The confirmation that I am also Autistic, correcting something I always knew wasn’t quite right — a 25 year old incorrect manic depression diagnosis.

I didn’t come into the words Autism or Autistic with the same fear that parents of young children seem to.  Even still, the early days of research after the Doctor in the Hospital first questioned the possibility made me walk away for 3 more months. I couldn’t deal with Epilepsy + Autism and my physical recovery from the Hospital stay as well as personal events all at the same time.

There’s no way to come online and research Autism and not run into Autism Speaks. It’s now 10 years old (see how we took over their #AutismSpeaks10 tag on twitter!)  Having a strong sense of justice is a hallmark of many an Autistic brain and fortunately I saw the ugly side of this organization that collects millions under our neurology using fear and dehumanizing language.

They use language like “crisis” and “missing” to describe us. Autism Speaks, who most parents come to when their child is first diagnosed, tell them things like their Autistic child will destroy their marriage, drain their life savings, bankrupt them. They read that they’ll never have a real family vacation, that their other children suffer as a result.

Suffer. Damaged. Broken. Missing. Crisis.

That is how the organization that represents the neurology of millions of us, describes  us. Sometimes on giant billboards for millions to see on their daily commute. Just stop for a moment – truly stop and let that sink in.

This hurts more than you can ever imagine.  You think we can’t hear you? You think we don’t know?  You think non-verbal means “low functioning” or “severe” (more dehumanising language) and therefore not able to understand?

No, it doesn’t. You are wrong. We do understand.  It’s heartbreaking.

But I am a champion of the underdog – one of the MANY gifts of being Autistic – we have a sense of fairness and justice and humanity that those with typically wired brains seem to lack. We have so much empathy that it could flood the earth when it’s turned on. Part of why we shut down sometimes, that much empathy is overwhelming. So I’m using the gifts of my differently wired brain to speak here today about moving past the Autism Awareness model and damage of Autism Speak$ and onto Autism Acceptance. The awareness model keeps us stuck – under this banner all that happens is begging for money which Autism Speaks barely uses to help us.  It’s shameful and should be criminal really. They take money to help find ways to eradicate us, from scared people, or people who think they’re helping in the “fight against Autism.”

Fighting Autism? Why would you do that? This isn’t a disease, it’s a difference in brain wiring. Stop fighting me!

The journey of the last 3 years that has taken me into the world of Epilepsy and move past the manic depression dx and into embracing my Autistic brain has been one of acceptance.  Yes, of course awareness plays a part but awareness is step one and step 2 doesn’t occur until acceptance happens, for ourselves and for others.

Here’s what else #AccpetanceIs

When I am able to fully embrace and work within the boundaries of my neurology, and that’s accepted, I am free, powerful, the very best Patricia I can be. I am a force of nature, a tireless advocate, a wellspring of love. You’d want me on your side, you really would.

But when I am stopped from that? I am weak, confused, angry, sad – the very least that Patricia can be – I don’t care about your side, my side – full of doubt and self loathing. I question my existence. I contemplate killing myself.

It was such a powerful moment when I started to stim during my EEG. The index finger of my left hand started it, then the right index finger, then a chorus of wiggling fingers and flexing wrists and I was home, I was safe. As the lights strobed faster and faster a few inches from my face, my fingers danced me through it. I wasn’t ashamed like in the past, or confused by it and ready to explain if needed – but it wasn’t.

I walked into the appointment and proudly said, “I’m Autistic and I need….

That’s Autism Acceptance — it brings its own awareness and on this day, one that means different things to those of us on the Autism Spectrum my deepest hope is you’ll join me in moving forward too. Humanity is not complete without us, not the other way around.

We aren’t missing, we’re right here, right beside you and always will be.

So let’s walk forward, together – #AutismAcceptance

I'm fascinated and deeply moved by the intrinsic timing of the universe. If I could paint it out, or draw it in a pattern it would be like the waterways of the planet - all connected,  one moment leading into the next moment. It's a giant set of cogs that I can hear when it clicks together. The earth has its own heartbeat, you just have to listen in a way that isn't just all about the ears. Along this journey  I've had many extraordinary moments that others don't get to see, or maybe they can't, or won't.  It's the intrinsic timing, a spiral dance of good and bad.  It's rounding a corner to go camping one weekend just in time to see an eagle fishing and standing in awe of the dance I was privileged to see so far back in the woods while standing in a lake.    I can see, taste, hear and feel things that many others can't.  This leaves me blind to many of the ways people interact. It's only a deficit when exploited.  I'm simply a different way of looking at things and I'm so grateful to finally understand and have a name for the special way I see and experience this world.                                       My name is Patricia and I'm Autistic.

I’m fascinated and deeply moved by the intrinsic timing of the universe.
If I could paint it out, or draw it in a pattern it would be like the waterways of the planet – all connected,
one moment leading into the next moment. It’s a giant set of cogs that I can hear when it clicks together.
The earth has its own heartbeat, you just have to listen in a way that isn’t just all about the ears.
Along this journey I’ve had many extraordinary moments that others don’t get to see, or maybe they can’t, or won’t.
It’s the intrinsic timing, a spiral dance of good and bad.
It’s rounding a corner to go camping one weekend just in time to see an eagle fishing and standing in awe
of the dance I was privileged to see so far back in the woods while standing in a lake.
I can see, taste, hear and feel things that many others can’t.
This leaves me blind to many of the ways people interact.
It’s only a deficit when exploited.
I’m simply a different way of looking at things and I’m so
grateful to finally understand and have a name for the
special way I see and experience this world.
My name is Patricia and I’m Autistic.

Autism Speaks Silenced on Twitter – 10 years in the making

When Autism Speaks reached out through their various social networks with their shiny new tag #AutismSpeaks10 they, like others who think they are unreachable somehow didn’t foresee what was to come.

(Edited to add: They changed tags it seems, so please now see < #AutismChampions >

I guess if they had any Autistic people working for them they would have had a better idea how things might go. We have wonderful big picture thinking 🙂

We can use that big picture thinking and see throughout history what happens when people are continuously silenced and oppressed. We can see what happens when they don’t even feel part of the human race, but know they are and want to be.

We rise up.

So Autism Speaks is celebrating their 10th year on Wednesday February 25th and they asked for anyone who’d like to share how Autism Speaks has helped them to use the hashtag #AutismSpeaks10.

In that hashtag a spark was waiting to grow like a wildfire.

We’re rising up.

So not only have we been sharing, but we’ve been taking the whole damn tag over and we added some tags of our own, you know, to fine point the issue 🙂

> #ActuallyAutistic (opens live stream on twitter in new page)
> #IAmTheEndUser (opens live stream on twitter in new page)

So in I went:

I was polite and thanked them next:

Things went along okay but then I wasn’t careful enough with my repeating of words. It’s important to stay open to learning and be open to correction. Gentle correction is great, if it can happen that way. It mostly doesn’t, I’m guessing.

Since I was live and active on this I was right there when Steve Silberman tweeted this and then retweeted my response.

Lifted up from the various exchanges I was feeling really victorious.

But what goes up must come down and there was some bullying. With the amount of noise I was making it was in the back of my mind as something that could happen, Even still, I did struggle for a while. But not that long, I’ve got such great support online now and this gem from a friend.

And back on track I went, first with some love…

then back to making hard points, which a lot agreed with:

and also decided to make a phone call, up the signal:

After the call I saw a tweet that reminded me of one of the many reasons Autistic persons and our families/friends/supports are so upset with Autism Speaks. They have a horrible history of dehumanising and exploiting us in their documentaries. The ableist language and the fear mongering is too much sometimes. I found a way to work with that:

Almost immediately ideas for a graphic started to come to mind.

Pesky creative Autism 😉

I’m really grateful for this amazing and yes pesky Autistic brain though. Would not trade it for another, would not want it cured or changed it any way.

Feel free to use and share this graphic. Would love a link back, or a comment letting me know where it may travel, but if not the link is on it so that’s good too.

What a wonderfully empowering experience this has been. Can’t wait to see where all the hard work takes us!! Well done everyone!

Great write-up on BuzzFeed:
[ Autistic People Spark Twitter Fight Against Autism Speaks ]

Sounding the alarm on #AutismSpeaks10