The Everyday Art of Autism Activism

By Tim Kasemodel

The best thing about the Age of Autism is how all the contributors get us thinking, creating an atmosphere of hope and possibility.  Instead of seeing only the injustice of it all and becoming overwhelmed by the magnitude of how vaccines have affected our lives, we have here a venue to help each other focus on the task at hand – waking others up to what is really going on regarding the meteoric rise autism.

Kent Heckenlively's recent post "Let Us Praise Good Doctors" got me thinking about how we in the "safer vaccines community" communicate and educate others in our daily lives.  Harry Hofherr's "A Savage Ignorance" reminded me why it is so damned important that we do.

I and some other people have been lobbying the Minnesota Legislature for too many years to simply "set a preference" for mercury free vaccines.  Through the years I found out that there are three different kinds of legislators.  Some say "no need to lobby me, mercury is toxic, I support you."  Others are simply uninformed and stunned that mercury is in vaccines, but hedge on support until they speak to the usual suspects who I will kindly refer to as the "mercury defenders."  Then there are the legislators who sit in their castle made of sand that politely deny support, or will not even meet with as at all; those who hold lots of political power and most often represent districts with big medical centers such as the Mayo Clinic.

Because of this political dynamic, I have come to realize is that it is much more effective and important to educate our family, friends, neighbors, and yes, total strangers.

I grew up shy, learning "manners" the old fashioned way – kids are to be seen and not heard.  Let's face it - Michael Savage would have loved my dad.  So for me to have stepped out of my shell and not only be comfortable, but confident and vocal in meetings with the Minnesota Department of Health is nothing short of a miracle.  Aside from the not so fun stuff, isn't it amazing what having a child with autism has taught us? (Kim S. and other parents of multiples must be "extra smart"!)  I use my newly found talent of extroverted behavior to talk about autism and vaccines anytime, anywhere, in any way I can to anyone I meet.

I know I am not alone, but I imagine most of you feel uncomfortable talking with "strangers."  I want to share a list of ideas that helps me facilitate conversation with others that leads to mini autism and vaccines "education classes."  To be honest, most of the time I have people approaching me!

Store checkout lanes.   People wear name tags for a reason – use them.  Strike up a conversation with the cashier about the food you are buying for your child with autism (or diapers, allergy meds, industrial type first aid kits, etc.) and either they or someone in the line may ask questions.  In fact in all of the stores I go to, most employees know me and ask about my son all the time. This in and of itself prompts comments from those in line behind me.

Tee shirts, buttons, and magnets   I can't say enough about the National Autism Association's Little Shop of Hope (HERE).  I go out sometimes with 2 or 3 "Giving mercury to children is stupid" buttons on my clothes and give them away when someone asks about them - buy at least a hundred.  The "I love Someone with Autism" is a real effective shirt as well – buy at least ten.

Bumper stickers   Get yourself a "cause car."  Anything about autism is useful.  Nancy Hokkanen made some great ones a while back that say "DEMAND VACCINES WITHOUT MERCURY" which I have on three sides of my minivan.  I come back to my car from errands all the time and see people staring at my van.  Best thing that happened last year was when I heard a flu shot clinic "helper" asked the nurse if it was HER car that had the bumper sticker on it!!!

Pregnant moms   This is a risky but very productive route to take, and I fully expect a wide range of responses to this.  Being a guy, I find it is easier to wait until they look like they are going into labor before I idiotically say "Are you pregnant?" and I only pick moms that look approachable.  Most moms are thankful I told them, but often I will hear them say they already got the flu shot, and I then am faced with a mom with the look of horror on their face.  I know what you are thinking – I made them feel awful or guilty or worse.  I do not see it that way.  When this happens I simply tell them to go back and ask their doctor for the package insert to see if it was thimerosal free, to ease their fear.  But I add that if it did contain thimerosal, to ask the doc to explain them why they thought it was OK for her to give her baby mercury.

Natural food stores (see bumper stickers and t-shirts, pregnant moms).  You will all likely agree that customers of these fine establishments are among the most approachable and happy people on the planet.  There is also a high likelihood of meeting another family affected by autism.

Playgrounds ( or anywhere you take your kids).  Another risk I take is when I notice, to use Dr. Gerberding's favorite term, "autistic like behavior."  One time a mom strolled up to a playground I was at with my son.  Her son giggled with delight and a quick three second flap of his hands as he ran through a group of kids without glancing at them.  I asked her if her son had autism to which she replied with a big smile "How did you know?  He was diagnosed just yesterday with Asperger's!" and we had a great conversation about vaccines.  Again, there is an aspect of approachability to assess – if the parent is dealing with a tantrum you can ask if you can help sometimes, but it is not the time to discuss medical politics.

Political functions   No matter what your political affiliation is you can attend picnics, parades, town hall meetings and even set up meetings in your home with local candidates of any party. Stand up and speak out with gusto wearing your tee shirts and buttons (see Little Shop of hope mentioned above).

This is just a short list meant simply to give you some ideas and encouragement to go speak to others about vaccines and autism.  Please comment on your own successes if you have connected with someone in some way.  Not everyone is going to agree with you and that is OK, but it sure beats sitting at home complaining and cursing the CDC.  We have spent five years banging on the doors of our elected officials to protect Minnesotans from thimerosal and so far have protected no one.  I spend five minutes with a pregnant mom and I protect two.  Remember, it only takes one person to change the world.

That person is you.
--
Tim Kasemodel is husband of Laura, a stay at home dad of two boys affected by mercury from vaccines, and a member of the Minnesota Natural Health Legal Reform Project, a group dedicated to the pursuit of health freedom for all.
 

Comments

[Angie]

I just posted this on a message board of mine and I was directed to comment here, forgive me, but I am just going to copy and paste since its a long post and I havent even had a chance to eat dinner yet..LOL! So, here it is:

Hi All!

I just wanted to see if anyone else does anything similar...
Since attending the Autism One Conference this past May in Illinois
(for anyone who is thinking whether or not to go next year, GO, it
was FANTASTIC! It was our first 'conference' and it was just GREAT! I
wish we were all in our own little 'city' of people..it was so great
to be with 'others' just like us, and with professionals that didnt
have egos, but had BRAINS and HEARTS! Its sad to us at least that we
felt more comfortable at the week long conference than with our own
families..so THANKS everyone!)

Anyway, since the conference, where we purchased shirts from the NAA
and from TACA (Green our Vaccines shirt), I wear the t-shirts and the
have one of my kids wear the one child's t-shirt we
purchased..literall y at everychance I can, ESPECIALLY if I am going
somewhere there is going to be a lot of people...(state fair, day out
with Thomas, shopping, etc)...My favorite NAA shirt only lasted 2
washing before it got a hole in the armpit...however I am going to
try to sew it..it says on the front 'We are used to poop' and on the
back 'its the crap we cant handle' and then some vaccine
information. ..lol! Its great!

So far, I have reached a LOT more people than before..I mean, I am a
pretty outgoing person and usually spark up conversations with
strangers if we are at a park/etc.... and usually bring up
Autism/Vaccines/ Special Needs/etc... but with the shirts, it makes
things much easier..most people approach me and ask questions... .even
people who claim to start off being 'pro vaccine' end up really
listening and taking the time to ask 'smart' questions...

I have spent countless hours really added up from grocery store trips
where the cashiers or customers ask questions, really helping to
spread information, rather than false info that our 'news' has been
focusing on...

Someone from this list (THANK YOU, I can remember off hand right now)
sent me a bunch of business cards with info all typed out because I
thought it would be nice, if I was in a hurry to be able to hand it
out if someone else was in a hurry or I was too much of a hurry, even
though I have really never 'not' talked to anyone even in a
hurry....but also for someone to take away a little list of info to
lookup after...instead of me digging for a piece of paper in my bag
to write things down..LOL! The cards are really handy, and almost
gone! LOL! And I havent just approached strangers with it, I only
give/talk if someone approaches me really..>I try not to be IN YOUR
FACE, I think its a turn off..

But, I really really really would LOVE LOVE LOVE A big car-magnet
type thing where I could put one on each side of our van on the doors
to 'advertise' even more...does anyone know, or is anyone on this
list, a printer that can make something like that? I would need it to
be really really cheap, or heck, even donated to help the cause
because of our financial situation (I am sure everyone here can
relate)....I would send the measurements of the door, and would like
them as big as it can be made without being too over the top...and
then have simple sayings like something like 'educate before you
vaccinate' and listing ingredients and also website info....

Please email me if you know of where I could go to get this done...

Also, I would LOVE to hear others stories if they do this as well, or
how you 'advocate' for our causes?

I also would love to have a link to more t-shirts and clothing that
is similar, because I 'live' in tshirts and casual wear, and would
have NO problem having every piece of my clothing be an advocacy
shirt for vaccines/autism/ special needs/DAN!/etc. ..so please post
your links to places that have them.....well, I would LOVE to also
know by the link if they are a for-profit company or non-profit, I
would love to support companies that help support families like us!

thanks for reading, sorry about spelling/grammar, our computer power
is so weird lately it just shuts off with no warning and I want to
type as fast as I can so I post before it 'cuts' off..lol!

Angie
Mom to Ethan, Alex, and Megan

[curt linderman sr]

Almost every town has a weekly newspaper, (whether it's a liberal rag like my hometown or a "what's happening locally" type rag). I have wrote a letter to the editor EVERY WEEK for two years now, exclusively on the toxin/autism issue. Not only have the sales of the paper gone up, but Knox County Illinois has the lowest vaccination rate in the state and the Knox Co. Health Department blames me!Keep up the good fight! I've gotten so popular now, that the editor allowed me to write a full page and a half article entitled Autism and our toxic world 101. that just happened this week, I have yet to get feedback from the KCHD!

[Alison Davis]

I have found that the twenty-somethings and grandparents tend to understand this issue more quickly than those of my generation.

We are very excited about how well our three boys diagnosed with autism are doing with biomedical treatment. People are noticing. Their lives speak better than most of my words.

[Tim Kasemodel]

What a great bunch of comments and ideas!! (Alison - Love the bumper stickers!)

Thanks everyone for sharing. If there is one thing I hope is picked up on by readers it is the mom's who said either they wish someone had talked to them or were thankful that someone had.

I want to reiterate the words I used:

"..how we in the 'safer vaccines community' communicate and educate others.." and "...ideas that helps me facilitate conversation with others...."

I never have the agenda of convincing anyone of anything, I just offer information and it sounds like we all agree on that. For instance with pregnant women I simply let them know I am working on legislation for mercury free vaccines and ask them to do me a favor by making sure they request 100% mercury free flu shots if they are offered and accept one, and then request 100% mercury free shots for their child when offered. No push, just educating them that there are mercury free options that they will have to ask for because their doctor is not required to make them aware there is still mercury in the vaccines. Their stunned silence is often my only reward.....

This works well with the elderly as well - I simply mention that Boyd Haley discovered the same structures in the brains of rats exposed to thimerosal as is found in alzhiemers patients and it seems to get their attention.

Lisa Jo Rudy, thanks for asking your questions (BTW, you gave me the highest form of compliment by confusing me with Kent Heckenlively!). You ask how I approach parents if I suspect autism - as if it is taboo. I do not see it that way. In many cases the parents already know something is up but do not know what to call it, or are thrilled someone else agrees with them. In fact, we tried for over a year to get our Ped to do something for our son. Then an 18 yr old daycare worker, after taking a night course to get teacher certified and got a 1/2 hr of info on autism built up the courage to suggest she supected autism - I said "Thanks, now tell our Ped" - who only then promptly suggested avenues of assistance. I am very grateful that she saw past her fear, that I might get "upset", and very courageously did what she knew in her heart was right.

So Lisa Jo, I do not see discussing autism or vaccines as a "touchy subject" or scaring people - I perosnally have never met anyone who became upset and I have never wound up in a feud. I have met those who refused the information and I politely walked away - feeling good about having tried.

As far as the discussion on your About.com site, that most people seem to feel that the direct approach I use is rarely as effective as I describe - I suppose that can only be described as an interpetation of the people who visit your site.

The commentors here seem overwhelmingly in agreement, and only want to inform those who want the information.

Thanks again everyone for the great response.

Tim Kasemodel

[alison macneil]

I made some bumper stickers, happy to give them away, send me your address....

"Another family heartbroken by vaccine injury"

"Hell hath no fury like the mother of a vaccine injured child"

"Odds your child will have autism after vaccine:1 out of 150."

davalinee@comcast.net

[John Stone]

The trouble is that we are dealing with belief systems, so it is as hazardous as trying to change someone's religion. It was a comic irony that Richard Dawkins attacked people showing caution over MMR vaccine as an example of irrationality, rather than examining the basis of his own faith:

http://en.wikipedia.org/wiki/The_Enemies_of_Reason

In fact the Cochrane meta-analysis, underneath the bureaucratic pieties and doubletalk, had concluded that safety studies - both pre and post marketing - were "largely inadequate":

http://mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD004407/pdf_fs.html

Indeed, there was not really even, as it turned out, a proper evidence base for saying MMR was effective. Contrary to Dawkins there was no purely rational basis on which you could vaccinate your child with MMR at all.

We are, of course, often posed the intellectual proposition - as an alternative to vaccination being utterly safe - that it is at least much safer than not doing it at all. There are two problems with this. One is that there is insufficient evidence base in many/most cases, and the other is that if you lose gamble then no one will be on your side - so it is not worth taking the risk for that reason alone.

I think these are things that you can say to people, if you find the right context, but of course you are attacking their irrational belief systems, and it is delicate.

[sdtech]

I reread my post and realized that I missed something. Just to reinforce the importance all your individual efforts, I continue to give “Evidence of Harm" by David Kirby to friends and colleagues and I write letters to the editor. I agree that our individual actions to educate are vital. Also this site as a media of communication is awesome. Thank you.

[Avery's mom]

I began speaking up about the health issues surrounding ASDs (including vaccines, but also food etc) with close friends. That was a way to get my feet wet and to feel more comfortable. Suddenly it became apparent that my friends had talked to their family and friends, who had talked to theirs, etc. It amazed me how much information had spread like wildfire and how many people had been affected. Speaking up is powerful, and never underestimate it's power, even if you do it just once!

[sdtech74]

Can we get a site to monitor Congressional votes so we can alert each state's citizens where their representatives in the House and Senate stand? Maybe this is already being done.

[non vx'ers]

i was pregnant with my first baby and shopping for cloth diapers on ebay, and the seller in her email mentioned that she didn't vx. she was a nurse too, and that really surprised me. so i looked it up just out of curiosity...that was the beginning of the journey that has taken me to 2 completely unvaccinated children (ages 4 and 1.5)
what was really effective about how that girl introduced the topic, she never tried to tell me what to do. she just shared that she herself decided not to.

[Teresa]

Great ideas, Tim, and thanks for all the activism you and Laura do for ALL our kids!

[Amber]

Good article and thanks for your hard work in Minn.
Our family stories are compelling. And they are also exactly what ECBT, AAP, CDC, etc, etc, DONT HAVE! They can never overpower us with all their rhetoric, denial, status quo, "everything is fine" trash.
I've found that most parents can't help but listen to what I have to say on this subject. What is more scary that your child descending into autism? Not alot. So when I casually say how painful it is (I could never actually put it into words), I have to follow up with-IT IS WORTH IT to take steps to PREVENT it from happening! Slow down on the vaccines! Dr's don't know what causes autism, so just in case vaccines DO happen to trigger autism, protect your baby!

[Andrea]

I thought this complemented Tim's article very nicely.

http://www.huffingtonpost.com/robyn-o/when-courage-and-conscien_b_117787.html

When Courage and Conscience Collide
Posted August 11, 2008 | 07:29 AM (EST)

I was raised on capitalism and the Wall Street Journal. In my family, the Reagans had an almost royal status -- to watch them dance, with Nancy in her red dress, gave me the feeling, as a child, that I was watching some magnificent combination of Frank Sinatra and a foreign prince with his graceful companion on his arm.

And I trusted that the political values that my family had instilled in me would serve me well.

And then one of my children got sick. With a blood condition that no one could pronounce and a pediatric mandate requiring immediate enrollment at a Children's Hospital. And I awoke.

Suddenly, everywhere I turned, there were sick children. Children with diabetes, cancer, obesity, asthma and allergies. What had happened?

As headlines in the paper warned me of environmental dangers, I began to pay attention. What was in the food? Wasn't organics a left-leaning thing? And what about the plastics and the baby bottles and the vaccines? Should I worry? Doesn't our system protect us from these dangers?

And without realizing it, an internal battle began.

I lay awake at night after conversations with my father who dismissed my concerns and growing awareness of our system's shortcomings.

I had been raised to support the system, to believe in it, and certainly to never speak out. Activism was something that "radicals" did, certainly not conservative, soccer moms.

But I couldn't shake the internal dialogue. So armed with an MBA in finance and my four children, I began to investigate the expanding role that corporations had taken in our system. And I was stunned.

There were new insecticidal toxins in crops to increase profitability for the world's largest agrichemical corporation, chemicals engineered into our children's milk to enhance the profitability of the dairy industry, colors allowed in their snack packs that had been banned by government agencies around the world. How had we ignored the health risks associated with capitalism's profits?

As I struggled with the responsibility in learning this information, I couldn't unlearn it, and I realized that it was now my responsibility to act.

And I reluctantly stepped forward.

With the words of another crusader in hand, I found my voice: "Each time a man stands up for an ideal, or acts to improve the lot of others, or strikes out against injustice, he sends forth a tiny ripple of hope, and crossing each other from a million different centers of energy and daring, those ripples build a current that can sweep down the mightiest walls." (Robert F. Kennedy).

I launched AllergyKids to give parents the tools to protect the 1 in 3 American children that now has allergies, autism, ADHD or asthma, I volunteered to serve on the advisory panel for the Show of Hands Campaign and other organizations, and I learned that one mom can make a difference.

We must not be daunted by the enormity of the task at hand, but dare to dream that it is possible to affect this change. In doing so, we will be inspired by hope and find the courage and capacity to act. Together.

Robyn O'Brien is the founder of www.allergykids.com, an organization designed to protect the 1 in 3 American children with allergies, asthma, ADHD or autism. Robyn has appeared on CNN, Good Morning American and in the New York Times as "food's Erin Brockovich". She lives in Boulder, CO with her husband and four children.

[nhokkanen]

Tim, thanks for this important primer on consumer education. More people need to be telling others how the CDC, AAP, AMA and pharma front groups are withholding information on vaccine injuries.

For most people, at first the concept that vaccines can cause harm is pretty radical. I recommend they read books and articles by doctors such as Dr. Stephanie Cave, Dr. Donald W. Miller and Dr. Bob Sears. I think that's especially important when approaching pregnant women.

The listener may be skeptical initially, but most find the topic important enough to follow up on. I wish that someone had introduced me to the possibility of vaccine injuries and the genetic predispositions eleven years ago....

[Harry Hofherr]

Tim, gotta say I love it. Thanks for the tips. I'll be sure to use some of them in the future.

I'm a true believer in getting the word out about the damage done by vaccines on a one to one basis. It's particularly effective when I have Eric with me. I always tell people he used to be a regular little kid, just like his big sisters. That always draws people out and makes them ask more questions.

Great post. Keep it up.

Harry

[Kathy]

Andrea,

Your comment: I don't do it to scare people. I do it to spare people.

What can I say, pefect. I do the same thing. I mean, all I needed to hear was if a kid craved dairy, they could be allergic. So of course, I removed it and saw positive change, made me delve in further. There are many parents who aren't like me though ... they accept and move on and I always wonder .. what could be?

I agree with you, I tell my story and let people make their own choices. I knew about the vaccine autism talk back in 1999 and discussed with my ped and he so assured me and I so trusted. Never again. Never. I mean he should have seen the signs before 2 ... my son wasn't diagnosed until 5 and that was probably because he was verbal.

All we can do is spread the word ... I had an aide my son had in kindergarten 3 years ago come to me in tears just before school got out "What happened to him? He just had a conversation with me, looked right at me, told me a couple of jokes he made up, even his tone of voice is changed! OMG!"

The proof is in the recovery.

[Andrea]

Great post Tim.

I write my letters to the Editor faithfully. I've had more than a few people when they meet me for the first time say "Are you the lady who writes the letters about autism-vaccines in the paper?"

I've had strangers call me and want to talk about this issue. I just want people to think. Think for themselves. We are not perpetrating internet rumors. We are relaying what happened to our children. We are sharing information with those who need it the most. Knowledge is power, right?

I also talk to pregnant women and moms of little ones. My neighbor has a little boy that is about 18 months old. I talked to her when she was pregnant and I have talked to her since he has been born. I don't push. It's the parents choice what they want to do about vaccines. About a week ago she stopped over with him and he seems to be fine. I never asked what she did about vaccinating. She did tell me lately he is walking very close to walls and looking out of the corner of his eyes. She's scared now to get anymore vaccines. I didn't say much- what can I say? She is seeing her son do some odd things. She's worried.

I have always felt "I wish someone had alerted me". I wish someone would have said somethng so at least I would have researched it myself. I'm intelligent enough to draw my own conclusions - I assume most people are. I don't do it to scare people. I do it to spare people. I have always thought "I wish someone would have said something to me". I blindly did what I was told and watched my child slip away. I'm telling the truth about what happened to my son- I'm not lying or embellishing.

Last night I bumped into an old friend from High School. I see her ocassionally and I knew her neice was getting married this month. The wedding was last weekend. She comes from a large family- 10 kids- no autism in the family. I asked her if her neice wanted to have children. She said "Yes", but the young man she married is worried because all of his nephews have been diagnosed on the autism spectrum. All of his sibling's boys have autism. They all attribute the autism to vaccines.

How can we pretend this is normal?

How can we not say something?

[Tanners Dad]

I am in sales and at least 20 to 30 people hear from me in person a day. Then I am kind of crazy on the web. I know that there are many more like us out there Tim. It is only a matter of time. It felt good to have a discussion with a co-worker that had her baby this summer and worked with her docotor to use an alternate schedule. What bothers me now is how the mainstream is trying to convince people that those that recover do not really have autism and the whole "Autism Like" thing. I would love to see a site or page dedicated to being the Everyday Autism Activist

[Holly M.]

I carry around a stack of Educate Before you Vaccinate business cards. When I see an infant seat in a parked car, I put one on the windshield. When I see an idle stroller, I drop one on the seat. My best was pinning Green Our Vaccine Rally buttons to a choral of strollers at the amusement park.

[Lisa Rudy]

Kent, I have to ask - how do you decide which moms to approach on the playground, and how to approach them?

The "should I mention it?" issue has been discussed more than once on my site, and most people seem to feel that the direct approach you used is rarely as effective as you describe. In fact, some parents have wound up in feuds with their own sisters and brothers when they brought up the possibility that "something" might be amiss in a niece or nephew's behavior - and that, just maybe, an evaluation might be in order.

Other peoples' kids are such a touchy topic - and the word "autism" can upset parents tremendously if it hasn't already been brought up...

Best,

Lisa Rudy
www.autism.about.com