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>Out and In: Bitterness bleeds Through, Robbing us of Breath and Joy

December 14, 2009

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Move through transformation, out and in.
What is the deepest loss that you have ever suffered?
If drinking is bitter, change yourself to wine.
–Ranier Maria Rilke
This week will see a series of posts on people in the online autism community, an attempt to see through to their humanity, to look at what they bring to the table regarding autism, respect, acceptance, and assistance, or the lack thereof.
Countering will explore with compassion the very real challenges that many, parents and autistic individuals alike, face, and hopefully help readers come to some conclusions about why some folks rise, survive, thrive, and others remain mired in the bitterness, bitterness that seeps like open wounds, festering all that they come into contact with.
A friend, Shannon des Roches Rosa,  and I, messaging back and forth discussed, and I shamelessly co-opt it here, the “role of community in molding attitude.”  It’s an important and extremely relevant issue in the autism-related community.
The idea of there even being a community, a collective of individuals who have some relationship with autism, is itself divisive, and it becomes ever more apparent that there are huge and growing divides between parents and the medical/educational establishments, depending on the particular “theory” of autism, as well as divisions amongst certain parents and autistic adults. There are divisions between autistic adults, as well.
And all of these divisions are seen by some as bad things. Tim Welsh, Tannersdad, called in October 2009, on Age of Autism for a unification of the autism community, as if all differences must be set aside for the good of the community. I would argue that, especially based on some of his writings and his conceptions of what this unity would entail, that this unity is not only not possible, it is undesirable at best.
He writes on Huffington Post to Autism Speaks:
“It is time to choose sides. It is time to choose our children. The Government has more than enough resource to defend their never ending policy of mandating more and more vaccines. Do you speak for Autism or do you speak for the pharmaceutical companies?

Are you for our children or against them?”

And yet manages to have the insensitivity to tell an adult autistic who questions him on his stance of Offit:

“I do not want to Change anybodies personality I just want to find one. My sons. I have sacrificed my son to a society that has poisoned him through environmental toxins vaccines.

Do not make me pay a greater price by dividing the voice of unity of the Autism community and removing the urgency to recover individuals that once could talk, feed themselves, use the restroom, and cross the road. My son’s last words after vaccines “My name is Tanner My name is Tanner July 4th 7 1/2 years ago.

All I ask is that honest real studies be done and answers found. Do not deny Tanner the rights of human dignity…”

December 1 at 9:44pm

Contrast this to his comment on Huff:

“It is simple to me. My son spoke. My son got shots. My son stopped speaking.

His Doctor committed suicide. The new Doctor is a Defeat Autism Now Doctor and started him on a new diet and supplements. Now he said his first words in six years… “Hi Daddy” the week before Father’s day.”

A nearly identical post appears 11/6/08 on the Washington Independent:

If the next 20 years are like the last…. Next stop extinction. There is no such thing as a Genetic Epidemic. My son spoke. My son got shots. My son stopped Speaking. M sons doctor committed suicide. The new defeat Autism now doctor gave him a new diet and supplements and he began to speak. “Hi Daddy” the week before Father’s Day. I will not rest until every mother hears the words “I love you Mama.” and gets a hug.”

And again on The Washington Post on August 30, 2008:

“My son spoke. My son got shots. My son stopped speaking. My son’s Doctor committed suicide. My son’s new Doctor is a Defeat Autism Now Doctor. New GFCF diet and supplements and he spoke again. His first words in six years…”Hi Daddy” the week before Father’s Day 2008. I will not rest until every mother of an Autistic child hears “I Love you Mamma”.

Wake up people these children are the canaries in the coal mine. If the bird dies you run. You do not debate the cause or potential cause. First do no harm.

You will know someone with autism soon. I pray that it will not be your son.”

The number of times he repeats this refrain boggles the mind: here, here (where Jen’s response to his post is excellent), here, where he also writes:

“There is a promise to the world… That we will not let the holocaust happen again. Well wake up people. A group gets segregated. A group gets ridiculed. A group gets poisoned. A group gets all sorts of stupid tests done to them. People die. People die. Children die. Children are guinea pigs. The world suffers and should be embarrassed by lack of alarm.

I thought this post would be about our freedoms. The more I read the comments I was to hurt to go that direction. The holocaust reference is not to be taken lightly. We are witnessing the death/loss of a generation. 1 in 6 of our children now have cognitive delays. Something is rotten in Denmark, Boise, Muscatine, Chicago, and Wasilla. In tears for our kids….”

And yet, Welsh calls for unity a year after these posts, a unity to be found, he thinks, through Twitter where, he believes:

“It gives us the opportunity to open a dialog in a non-combative way. With only 140 letters to say what you have to say, editorial comment and exaggeration must be left on the cutting room floor. All factions are represented. It is time we stop preaching to the choir and move out into the real world.”

And yet, he comes up short of his ideal for unity and the leaving behind of exaggeration: “@AutismScienceFd Perpetuates the lie… Sleep well Alison… Thief of the @AutismSpeaks Seat for IACC Another layer of Overhead about 2 hours ago from web in reply to AutismScienceFd.” (tweeted 12/13/09) or this charmer on his facebook page: “Alison Why would U start another #autism non profit in middle of a depression? Oh I forgot YOU stole @AutismSpeaks IACC Seat ASF PHARMA Best.”

Unity that comes at the expense of the actual individuals impacted directly by autism is unbelievably rude. Unity that suggests only your opinion is the valid one, the one that should be heard, is not unity. It is not a unity worth having, and it belies the idea that unity in the autism community should exist for the promotion of better resources, better respect, better treatment for autistic individuals. These posts collectively put aside the possibility of taking Welsh’s call n for unity in the community, for a twitter dialogue, seriously.  
It does, however, raise some interesting questions. How do we measure influence? Do we measure it by Twitter followers? Then Welsh’s 3130 followers would seem to suggest a fair amount of influence. Do we measure it by Tweets? 12,150 tweets as of today suggests that Welsh works hard to get out his message. Age of Autism, by contrast, only has 1362 followers and 850 tweets. Of course, Dr. Jay Gordon dwarfs them all: 4,508 followers. Does twitter command any respect, reflect the reality of the influence of people associated with the autism community? I honestly don’t know, but I do think that Tim Welsh’s influence in the autism community is isolated to those who believe that autism is caused by vaccines. I believe that his own rhetoric condemns him to isolation, and while I have tremendous empathy for the difficulties his wife and he, and Tanner, especially Tanner, face, Welsh is not someone the broader community, in the end, should pay much attention to, and it his own words which demonstrate why for most of us, the best thing to do is to avoid entirely dealing with a person whose professed interest is in “Having Age of Autism up on my computer at all times.”

The first exposure I had to Tannersdad was in Jim Carrey’s Huff piece, The Judgment on Vaccines Is In???.  It was a surreal posting, and it’s one, where like many of his others, he copied it out and about the web.

Welsh commented Apr 22, 2009:

“Thank you Jim. We need to be out front. I know we have stirred the pot of a giant. The pharmaceutical companies just signed Jennifer Lopez to a PSA deal to promote vaccines for all ages. I just hope my vision does not come true but everyday there is news stories that say we are headed down that path

The year is 2030 Autism is cured. We were poisoning our children through generational mistreatment. The research confirmed that a sub population had a genetic tendency towards non elimination of toxic materials. In 2020 the vaccine Safety law & Human responsibility act was put in place. Human Dignity was restored after vaccines had topped more than 100 and forced boosters shots were put in place in 2014. The rebellion of 2015 was horrific. People kind of snapped when the rate of Autism ADHD allergies & other cognitive delays had reached 1 out of every two. Thank God for the group known as the Big Ten Autism advocacy groups coming together in 2011 and building a coordinated strategy to deal with this. Their foresight helped to minimize the blood shed and force the real court system to demand that the Government separate itself from the pharmaceutical companies. The tragic component still was the 8392 lives that were lost to Sids, mistreatment, the ineffective vaccines of the 2009 era forced on young girls & boys and the explosion of Autism to 1 in 25.

http://www.causecast.org/member/tanners-dad”

Although it doesn’t show it on the thread itself, if you look at his profile page and thumb through the comments, you can see that I replied (or at least attempted): kwombles replied on Apr 24, 2009 at 00:18:30:

“What? Is this your Glen Beck worst-case scenario? Just what kind of rebellion are you envisioning? What bloodshed and how does this not come across as incredibly wonky, if not threatening? And what kind of censors are there that you can get this up more than once?”

Now, some of this stuff used to be on his causecast page, but for whatever reason, I can’t find that rhetoric easily and have to rely on a google search of the 2015 rebellion sentence. It is still on this page, though (and worth the in-depth quotation):
 

“This is the first of many progress reports on my path towards curing autism. Here again is the vision that I had. I know the implant Idea is far fetched but just this week I saw a piece on being able to control robots with the mind. My job and yours is to find small ways to move us towards this mission.

Our next task is to get all of the stakeholders on board willing to take on this task. I have listed twelve that I would like to invite. If you have any connection to these organizations please tell them this is what we are going to do. Find a cause & Cure Autism before 2030.

 So far I have in no particular order:

1.Generation Rescue

2. TACA

3. ARI

4 National Autism Association

5. Safe Minds

6. Autismone.org

7. ASA

8. Autism Speaks

9. Autism Trust

10. treating Autism

11. unlocking Autism

12. causecast.org

We do not have a lot of time. The first of many miracles we need is to have the pharmaceutical companies come together to sponsor and pay for the vaccinated vs non vaccinated study that has been requested for more than 20 years now. As parents we must demand things that governments will not provide. Now is the time. We are what our familes have been waiting for.

In case you missed it here is the original post with the vision. We must keep this front and center as we work towards the goal of finding the cause and curing Autism in the next 20 years. As I said I have nothing left to give. I am truly on empty but I have faith that will carry me through. This faith I believe is strong enough to move mountains and bold enough to point out that we have done something bad to our children. The time is now. Please help.

The year is 2030 Autism is cured. We have united as parents to find the cause. We have realized we were poisoning our children through continued generational mistreatment of our bodies. We were able to get the pharmaceutical companies to partner with us in 2012 to research the spectrum of disorders. The research confirmed that a sub population of the world had a genetic tendency towards non elimination of certain toxic materials in our environment.

Through the use of new technology invented years before, cochlear implants we were able to micro size and implant systems that allowed us to communicate and retrieve the knowledge of our family members dealing with Autism. They soon became the leaders of our society. In 2025 the first President of the United States with Autism was sworn in.

In 2020 the vaccine Safety law and Human responsibility act was put in place. Human Dignity was restored after vaccines had topped more than 100 and forced boosters shots were put in place in 2014. The rebellion of 2015 was horrific. People kind of snapped when the rate of Autism ADHD allergies and other cognitive delays had reached 1 out of every two. We had every social system of care break. Thank God for the group known as the Big Ten Autism advocacy groups coming together in 2011 and building a coordinated strategy to deal with this. Their foresight helped to minimize the blood shed and force the real court system to demand that the Government separate itself from the pharmaceutical companies. The tragic component still was the 8392 lives that were lost to Sids, mistreatment, the ineffective vaccines of the 2009 era forced on young girls and boys and the explosion of Autism to 1 in 25.

The inventions and amazing abilities uncovered by the technology and responsibility of these future generations was credited with saving the human race.”

My friend Louise recently wrote a post that I think has direct bearing on this:

“I guess the point I’m trying to make is that sometimes folks say and do ignorant and hateful things. These things aint never acceptable-and these folks need to be responsible for their words and such. Sometimes though, we all need ta step aside and think about what might be causin these folks ta say and do these things. Some dumbasses aint dumbasses at all. Sometimes they got issues an whatnot. I think that helping them ta recognize their behavior, with understandin and kindness is part a what neurodiversity is all about. I aint sayin don’t put folks in there place. Don’t give em a little whup ass…Hell No! I’m sayin try ta understand where they comin from afore you do. Cause mental illness aint always recognizable. Me and my gal Thelma learned that for true a few weeks ago. Not all dumbasses are created equal, some a them need a gentle push, and a whole lot of them need a whup in the ass.”

No one can know, looking from the outside in, the strains that a marriage, a family, an individual bears. We can know what the actions show, what the words say, but we cannot know the interior reality for each of the people involved.  While many, if not all, of those attached to the vaccines/autism side would argue things like those of us who acknowledge the current state of science don’t love our children or think that autism is a joy, a gift, etc.,  the truth is that those of us parents who have decided to focus on the positive while working hard to help our children master skills, improve, learn, grow do not whitewash autism, nor the demands that having a special needs child can make on a parent. We just don’t think this is about us. It’s about the individual with the disability. It’s about respect, about acceptance, and about support.

If you’re throwing out pseudoscience and contempt for autistic individuals, if you’re insistent on your view of reality, then you aren’t going to accomplish your goal of unity because a great many of us parents and autistic individuals will stand up and call you on it.

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4 Comments
  1. December 15, 2009 12:32 am

    >Oh well done Kim-wonderful quote in the beginning. I found much of what he wrote to be truly frightening-I just wonder how the children of parents like this are going to, or already see themselves as. Yes change yourself to wine…unfortunately we have bitterness turning to whine..

  2. December 15, 2009 2:32 am

    >I hope I'm not one of them.

  3. December 15, 2009 2:37 am

    >I figure I need to do a balance on the posts, and Stephanie, you've come so far, shown grace as you've grown. I was thinking of showcasing your blog, Corina's, Nightstorm's, Lindsey's, and SBWG's as young women on the spectrum who are honest in their voices and who shine. Would that be okay?

  4. December 15, 2009 5:29 pm

    >Kim, well done. Honestly, the only take-home I have in re: Tanner's dad is that he sure does perseverate, exhibit repetitive behaviors, etc. I have noted, and I'm not trying to be snarky here at all, that many autism parents show a few (or many) signs of autism themselves. It might be worth keeping in mind that there are many undiagnosed folks out there and to try to interact with that caveat in mind.

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