The Vaccine Myth Hurts Autistic Acceptance

I will be involved only if your voice is a part of the program.” said my new friend Allison Garber after a series of quick emails back and forth.  I’ve come to really rely on her opinion and perspective on many things.

I’m going to need you to do something before you go any further please!

Click on the picture just below this paragraph (will open a new window) and listen to the documentary first. It’s going to be the  topic of the rest of this entry and one of the most important things I have ever done. It’s audio, under a half hour and features myself and Allison and our perspectives/experiences with how involving Autism in any type of vaccine debate is harmful to those of us living on the Autism Spectrum and our families.↓

On February 6th, 2015 I got a very interesting message through twitter from a CBC (Canadian Broadcasting Cooperation) reporter named Melissa Mancini. I’ve been getting more requests from reporters in the last 6 months because of my ever increasing advocacy for the Autism Spectrum, mostly done on Twitter.

This felt different. It felt like something I wanted to do, but I needed to ask my new friend who seems to understand this stuff better than I do.

Allison’s willingness to be inclusive and her need to elevate the voices of those of us on the Autism Spectrum and not drown us out has been a constant theme since we met.  Her son was diagnosed in 2013 – here, let her tell her own story. Allison gave her 1st ever TEDxMSVU talk just 6 days later (video below) ⇓

I wrote the reporter back and said yes.

On March 8th, just 3 days before my 46th Birthday I walked into the new CBC studios and did something which I could have never guessed I would be doing, but that felt like the absolute right thing to do.  With the microphone finally in an acceptable place I began the interview. Time flew – When Melissa turned her recorder off, we had been there 2 hours!!  I was also given a very personal tour. My past experiences in Playback and Community Television meant I had Scripts to go on and really had a wonderful experience from start to finish. I felt accommodated and safe.

This morning the documentary aired on Atlantic Voice.  As I was writing this I heard the promo for it come on another CBC program and my voice lead the sound clip. A warm rush went over my body.

I listened to it last night though. It aired online on Friday and it took me till the witching hour to listen. I was so nervous. All the nerves that I did not have on interview day, were sure here now!!!

I invited a dear friend to listen with me.  She’s in California, USA and I’m in Nova Scotia, Canada. We were on our computers at the same time.  This is not unusual for us, it’s how it’s always been. We met online about 15 years ago and sharing this experience with her was intensely special and will just further strengthen a bond that is as deep and true as any I experience face to face.

I was shaking as I hit play. No amount of stimming was going to help me sit still any sooner so I rocked, wiggled my fingers, whatever I needed to do to soothe myself as the words passed through my ears.

It’s the idea that we’re damaged, that we were normal, quote/unquote-normal, until something came along that damaged us.

YOU!” typed my friend and it took me aback. I didn’t recognize my own voice at first. Wow. It is a moment I will never forget. It overtook me, I will admit.

It’s been an incredible process leading here. From my brain finally hitting the tipping point and seizures beginning right at the end of 2011, to coming to this place where I am listening to myself advocate and not holding back for countless people to hear. I’ve stepped from the shadows of a 25 year incorrect Manic Depression (BiPolar) diagnoses received as a teenager and fully embraced my proper Neurology of Autism.  The transformation became 100% complete when I heard myself say in the documentary –

Because when you see the vitriol. When you see that people are more scared of Autism then they are of diseases…it makes you step back”

That’s what really confuses so many of us…That you would really rather risk your child getting this disease then being Autistic? What is it that you think autism is that’s so much worse than this?  Like, we’re just people

Another admission – I hit pause and laid my head down on my desk and sobbed. That guttural cry that holds nothing back and leaves it all exposed. It’s a point from which you can then start again.

In my determination to make the path for kids like Allison’s perfect Hugh, I am finding healing for myself through self acceptance. And true to how I live a life of full circle moments, Allison and I first became acquainted on twitter through a seemingly unrelated issue. One that brought me great pain for a long time. I’ve let that all go now with the closing tones of the documentary. That experience brought my website name, the revitalizing of a lost art form for me, and Allison and her family. It’s opened up countless opportunities.

Deviation from the norm

I’ve covered the vaccine controversy in regards to Autism already (click here to open in new window) – so I don’t need to do that in this entry. What I need to emphasize here, as I did in the documentary, is the urgent need to move past the lie of an Autism/Vaccine link as well as past Autism Awareness and onto Acceptance.  A message especially amplified in April as events and organizations as varied as us all on the Spectrum, look for ways to raise anything from money to acceptance to awareness.

All of this can happen, but it doesn’t need to happen at the expense of the neurology of those of us with differently wired brains any longer. We are not tragedies to be looked down upon nor ethereal beings to stand in starstruck awe of.

We are people. We hear and understand more than you seem capable of accepting or understanding. The sooner that happens, the sooner the lives of all of us improve. It’s not us who are limited in our abilities to comprehend – from where I sit it’s a large portion of Neurotypical society who is limited in their ability to accept normal is nothing more than a setting on a washing machine any more.

I hope the documentary (here’s the link again!) will be a step forward towards a better understanding and acceptance.

Clicking this picture will take you to the web write up to go with the documentary.  I was humbled and really excited to see my artwork and photography included. Wow!

googlenews screencapMany thanks to:

Atlantic Voice on CBC Radio Maritimes (those links are near bottom) and all the reporters and people dedicated to sharing our stories and the issues facing the various members of society. And to the reporter, Melissa Mancini who has shown great care, patience, and consideration and has really captured the heart of everything I was trying to say. This will stand as an important part of the growing dialogue towards Autism acceptance not just here, but around the world.

And most importantly my family and friends for all their support, guidance, laugher, tears, abiding of my special brand of stubbornness, and not abiding it too. I love you all so much I’ve done this huge thing so I can be me and stay with you all as long as we can.

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.