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.

Autism, Vaccines and Opening Closed Minds, Including my Own

I was 18 in 1988 when I got my first and last flu vaccination.

But it was way back in 1938 when Jonas Salk and Thomas Francis developed the first vaccine against flu viruses. It was used to protect the U.S. military forces against the flu during World War II. Dr. Salk later used his experience with influenza vaccine to develop an effective polio vaccine in 1952. Extraordinary and life changing for so many people.

Emergency polio ward at Haynes Memorial Hospital in Boston, Ma. Aug. 16, 1955

Emergency polio ward at Haynes Memorial Hospital in Boston, Ma. Aug. 16, 1955

The sickness that hit me just days after the shot was unlike any I had ever experienced. When my fever wouldn’t break after 3 days and hit 104ºC my Grandparents called the Family Doctor and he came to the house to see me. There was talk that I may have had a convulsion (seizure) as a result but no one was totally sure. Incoherent, eyes rolling around in my head, weak, he decided that after trying a few more things I would be hospitalized if the fever didn’t break.

But it broke and so did a piece of me for a long time.

I became far more afraid of what might have been in that needle than I was of the serious flu that I had just experienced. Fear had taken a hold and once fear gets a hold of you it is nearly impossible to shake.

I get it – I really, really do. I get it more than most.  I’ve been vocally anti-vaccination in the past. As you read on you’ll see why. But you’ll also see that life has handed me some contrasting and difficult experiences to force me to look deeper into all of this.

In the early 1990‘s there was a mass education and vaccination program for Hepatitis here in Nova Scotia. I went back and forth about it in my head and heart for a long time but in the end I decided to do it. No bad results and my trust had buoyed back up from being so low about my experiences and misunderstandings about the flu shot.

That trust took me and my first puppy to the vet to get all of her shots a few years later. Up until she was 6 years old I did as I was instructed by my Vet. Then she got very sick. She developed vaccinosis from her distemper vaccine. She spent the 2nd half of her life with a lot of issues.

And just like that, I was done. The trust regained from the Hepatitis vaccine gone, and it was replaced with deep anger and fear. I don’t have children but I had handed my heart over to my dog in a way that I hadn’t with any other human and I was angry.

So a toxic stew of anger and fear set me on a journey to validate my anger and fear.

I came online and found others who felt like I did. Others who felt betrayed somehow by science, even though we haven’t been at all. Others who questioned the ingredients, the frequency, the science of it like we had all gotten microbiology degrees to give us the guts to do that! We had, we shouted! We spent countless hours reading, talking to others. We read everything we could find.

Except we didn’t, did we?

We succumbed to many fears. One huge, not seeming-to-go-away-yet fear was grown in our hearts by a woman who can’t decide if her son is even Autistic or not. She was given a platform by a woman who should have known better. Neither will get a link here, nor their names mentioned.

Let’s come forward to today for a moment – A radio interview I listened to that years ago would have made me angry and I would have shut it off highlights this lie that we surrounded ourselves in. The one that lets enough science in to shut down the science of another. The one that dismisses scientific fact over anecdotal evidence. You know why? Because it’s head versus heart. Logic versus emotion.

The link to the interview which really is a must listen to, will be at the end of the entry.

Armed with so many emotional facts I started to feel confident in my arguments. They started to sound real to me. The “buts” and “what ifs” which are good tools for critical thinking, had somehow suspended my ability to do so!

Fear.

I rejected allopathic (conventional western) medicine for a decade after that. I had no family physician. Anything that a MD wanted people to take was suspicious to me.

Any time I waded into good science based websites the confusing terminology made me frustrated and I’d leave before being properly educated. Or what I was reading was challenging my stubborn, fear based beliefs and I’d close the page and find comfort in something that supported them. Once emotion becomes part of the equation for our health, we start feeling like Doctors are cold and don’t really care. Science won’t hold your hand but people need and want that sometimes.

Science needs to step its game up that way if we are going to fix this rift. It has to allow for the feelings and the gut instincts of those it serves.

In late 2011/ early 2012 these worlds all collided for me and have led me to here. I had a seizure in 2011 but my deep mistrust coupled with severely needed mental health care kept me from getting help and those in my life didn’t get it for me either. So I had another in 2012 and back into the world of Western medicine I went with a bang. Many fears had to be faced then.

What resulted was being diagnosed with Epilepsy and having an incorrect diagnoses of Manic Depression (Bipolar) in the 1980‘s corrected to Autism.

I was thrust into a world I was not prepared enough for but one that was and is schooling me. Don’t be afraid to be schooled, please. Especially when it involves the health of those you love, and the greater population too. We can’t afford to micro focus these issues. Our actions do effect those around us and that fans out in ways we can’t control.

The greater population. Humanity. We are more than what is in front of us. The internet gives us an idea of that but most still have only the small view of their immediate world. Many parts of this planet still live in abject poverty, with diseases that we have no clue about. Billions of us live in parts of this world that are underdeveloped according to the standards we know here in Canada. A friend talked to me about how women will carry their children hundreds of miles in conditions we can’t fathom, all for the chance to get a vaccine that we have rejected to the point of it becoming a problem that was once under control. They face being attacked by both animals and men alike. They do it for a chance to give their children a life that we have, well had – it’s eroding.

A vaccine like MMR (Measles Mumps Rubella) that people with actual working brains in their heads are so afraid of their children turning into someone like me, an Autistic person, that they would rather them face the 2 in a 1000 odds of dying from measles (link)

Some facts from above link:

As many as one out of every 20 children with measles gets pneumonia, the most common cause of death from measles in young children.

  • About one child out of every 1,000 who get measles will develop encephalitis (swelling of the brain) that can lead to convulsions and can leave the child deaf or mentally retarded.

  • For every 1,000 children who get measles, one or two will die from it.

    Then there’s this:

    Subacute sclerosing panencephalitis (SSPE) is a very rare, but fatal disease of the central nervous system that results from a measles virus infection acquired earlier in life. SSPE generally develops 7 to 10 years after a person has measles, even though the person seems to have fully recovered from the illness.”

If you are going to turn anecdotal evidence into fact, then you also have to take the facts into consideration. Healthy people making illogical choices for themselves and their children affects the most vulnerable of society. It effects immune compromised persons and the single biggest scapegoats of this anti-vaxx movement are the Autism community.

I finally had to face my ignorance head on when I found myself being described in ways that just were not true. Autism education and acceptance lead me to a complete understanding that being Autistic has nothing to do with vaccines. When I stopped being afraid to look at the science, to not let the big words deter me it all started to make sense. When I saw that the findings were just not true and that Dr. Andrew Wakefield’s licence had been taken, I knew I had let fear control me for too long.

No matter what though we can’t seem to shake the lie that vaccines cause Autism. Even though we have existed long before vaccines. Even though I’m telling you so. Even as my peers, myself, and those who love and support us express how much this us hurting us? Countless others have had no vaccines at all and were still revealed to be Autistic.

Still not enough?  How about No Thimerosal was ever in the MMR (Measles Mumps Rubella) vaccine in Canada. Bet you didn’t realise that.  Don’t parrot others fears. Fact check.

So now I’m trying to help undo the damage I may have caused in the past to myself and to my larger Autism Community. I owe you the biggest apology of all. I’m sorry. Now I lend my space here online, my voice where I can, my time, to correcting this.

It is not okay to use my neurology to scare people any more. If you are afraid it’s okay to say so but it’s not okay continuing to hurt others when you are shown facts and reason. Those afraid of their children somehow becoming autistic due to things they don’t understand are themselves acting in ways that they fear about Autism, ironically. The lie that we are unreachable, that we don’t care about society, that we have no empathy – anti-vaxxers are the ones displaying these traits in their actions while hiding behind the neurology of others.

It’s ugly, okay? We need you to stop now because it is hurting us and creating fear where there should be acceptance and understanding. Vaccines do not cause Autism. Vaccines overwhelmingly protect us and those they can’t protect, the strong in society protect by being responsible.

Whatever choices you feel are necessary to make regarding vaccinating your children, please make them without the fear of Autism. Let that big fear go and you’ll feel a lot better, and so will we.

2 VERY important links:

1. (LINKAnna Maria Tremonti, host of CBC’s “Canada’s Most Listened-to Radio ProgramThe Current pulls NO punches in this must listen to Interview called, “Vaccinations: Pro and Anti-Vaxxer parents make their cases”  Here’s another LINK to the show if there’s any problems with the other one.

2. (LINKShannon Des Roches Rosa is the senior editor of thinkingautismguide.com and she has been a source of great support for myself and the Autism community.  When I had to turn down a TV Interview about this subject because I didn’t have transportation and then I read Shannon’s heartfelt, honest article I felt like I had to get this all down to be part of the growing voice and offer my support and experience.

Thank you Shannon! Your words and dedication are making a difference.

I’ll leave the last words to Chief Seattle. A quote I’ve carried from computer to computer for about 16 years.