Thank You Molly Hightower, Haiti Earthquake Victim
Autism, Empathy and Martin Luther King, Jr.

It's a Viral World: Making Autism Contagious.

Vote Autism Managing Editor's Note: If you are on Facebook, please  vote for the National Autism Association in the Chase Million Dollar Giveaway HERE. NAA's Helping Hand fund puts dollars into the wallet of needy families, they are fighting against restraint and seclusion, working to prevent death and injury from wandering and much more. Visit NAA to learn more. 

By Kristi Hammer

A friend once sent me a nice text message, following a wonderful event for Make a Wish Foundation, telling me “what amazing work this organization does”, and how he definitely wanted to “get himself involved in a meaningful way with his time and resources.”  This man, a prominent business leader, with influence over major donations, had listened to endless stories of my plight with autism, always commenting on what an amazing story it is, and what a joy my “recovered” son is.  I quipped back via text, “Yes….it is so much more smile inducing to send sick kids to Disneyland vs. helping children who are screaming in pain and beating their heads against the floor, while their parents watch in despair, learn how to communicate.”  Ouch!  I was angry!  Not at him, but about the elusive question we all ask, “Why don’t people, who are unaffected by autism personally, feel the passion to help our cause?”|

Everyone I know has heard of my son Jeremy’s miraculous story of recovery from autism. 

They are amazed, and even more so moved because of what a magnetic, inspirational kid he is today.  People love him, and it is hard to believe where he once was, screaming and writhing for hours, or days on end.  They sometimes shed tears at the story of his recovery, especially how the doctor once told me “he may never have a friend, he will need special schools, he may never live independently, and he may never be able to say he loves you”.  All of which are a relatively distant memory.   I tell them, “thanks to the organizations and other parents who gave their time to hold my hand, and guide me along the path to recovery”.  They are moved, clearly, but they are somewhat subdued about their compassion, as they say something along the lines of, “I didn’t know that was possible”, as if it were a fluke happening, or a misdiagnosis.  It isn’t the “contagious”, how do I get involved sort of compassion one usually sees with such a truly remarkable story. 

People like to give their time and resources to things that make them “feel” good.  They like “inspirational stories”, that give them hope.  They like to hear about “what a difference” they were able to make.  It is understandable.   We are a society sick from constant exposure to suffering, and we need this positive input to keep our minds healthy.  In today’s world of “viral” communication, word may travel fast about suffering through news outlets, blogs, etc., but what individuals are sharing, spreading, responding to, and soaking up like sunshine, are the clips and words that make us feel better.   Could the answer to our lack of support be found in how we are “marketing” ourselves as a community? 

Don’t think for a moment I agree with this mentality, but maybe people can’t bear to hear about our struggles, heartache, and the desperation of it all.  It took Jenny McCarthy on the scene, before anyone would even speak to me about my ordeal while making direct eye contact.  Once her passionate message (thank GOD for her) became mainstream, I heard even some of my best friends say things with a snarled lip like, “she is just too emotional about it all” as if that is some kind of “turn off”.  I want to beat them over the head with their stilettos and say “HOW WOULD YOU FEEL IF THIS WERE YOUR CHILD?”!   We are in survival mode, this is a national emergency, the sense of urgency is overwhelming, and so is the desperation!  These are all the unfortunate truths, and maybe our society, out there searching for feel good fixes, can’t handle the truth. 


Yesterday, I posted the NAA’s Chase Community Giving link on my Facebook page.  It is the opportunity for the National Autism Association to win $1million simply by having the most votes on Facebook.  The video is awesome, and paints a picture of both the desperation AND of the hope.  I cried my eyes out watching it, most notably the part stating “we have seen children recover”…cut to clips of parents saying “Mine did”.    Expecting a rush of my “Friends” to jump on board by taking the 15 seconds needed to click the “Vote” button, I personalized it by reminding them that Jeremy is recovered; “MINE DID,  thanks to the help of this organization”.  I got 3 responses…from other autism parents!  Where are my other “Friends”?   Perhaps this wasn’t the feel good fix they were looking for when they logged onto Facebook.

In this you-tube video, viral age, the proof is in the “views”.  The only autism related item I’ve seen forwarded by my friends outside the community is the Jason McElwain Autistic Basketball player video, with a record of MILLIONS of views, as compared to any other autism video with views only in the thousands.   Maybe we should consider “marketing” ourselves to the masses, as an “inspirational” story, with “feel-good” opportunities to get involved.   We can’t soften on the battlefront, obviously, or nothing will ever change, but we need to get significant funds into the hands of the organizations waging the war, and educating us as parents, so we can help our children today.

You can’t “catch” autism, but how can we make the desire to help the cause become “contagious”? How can we “spoon-feed” our message to a “viral world” whose feel better fix is “Chicken Soup for the Soul”—perhaps a spoonful of sugar helps the medicine go down. 

Kristi Hammer is an Entrepreneur and Consultant in the consumer products and brand development industry.  She is an autism activist, and the Mother to a 7 year old boy recovered from Autism, thanks to organizations like the National Autism Association, Generation Rescue, and the generosity of other parents in our community. 

Comments

Marc Dixon

Hi Kristi, Marc here in the S.F. Bay Area. I work for Behavior Counseling Research Center as a 1:1 Aide for Autistc Youth. I'd like to talk with you about a couple ideas that connect well with your journey.
1. My Artwork Puzzles (Life Lines)
http://www.djchrisraver.110mb.com/marc/index.html
2. My Sandtoy Patent (O.T. & Promotions)
http://numberonecycle.com/soundweb/sandspools/
3. "World Wide Rave" (Book by David Meerman Scott).

I look forward to meaningful dialogue.

Marc Dixon
Sandspools-Playtools
Life Lines Art
funsand@hotmail.com
707.712.7553

Darian (nickname)

I don't know about that. Call it an Aspie tendency, but I prefer the blunt truth. And the truth is, as much as the doctors may want it to be so, and as well as I can fake being like everyone else, I am not.

I can get along in the world. I have a job, two loving kitties, a boyfriend. But I am still not a part of the world. I still am not allowed to be myself. Because being myself involves not having emotion appear on my face, and this inability to connect to the real world.

There is a seperation there between me and the rest of the world. I can move around in it. I can fake normal and get by. But it is exahusting! And it is not the real me. I feel like an actor who never gets to leave the stage.

I don't want to fake mormal anymore. I don't want to have to try so very hard, but still only move around in a world that is not mine, how could it be, when I don't understand it? I WANT TO BE NORMAL!! To just be, and not have to try so hard to have what everyone else has with much less effort.

So though I may look recovered, I am not. I am not saying it is impossible. And I believe the author did exactly that. I guess my question is, could you help those like me?

Dan E. Burns

Talk about inspirational stories, folks, we are living them! As I was raising Ben and writing my book, I asked myself, "Can anything good come out of this disaster?" The answer, surprisingly, is yes.

Look around you. Raising a child with autism is an opportunity for self discovery, empowerment and personal growth. These are Oprah themes!

Take my story. I didn’t want to be Superman. I just wanted to be Clark Kent, reporter, teacher. And a good father.
But the tigers come at night, and if you’re a reading this comment you've faced them. Chances are you turned to the tigers and stretched your claws and said, “Not my kid"

And the blinders fall away, and you find yourself in a battle against ignorance, prejudice, clueless doctors,a zombied education system, helping professionals who don’t help, caregivers who don’t care, and a medical establishment too often more concerned with protecting egos and incomes than relieving the suffering of child. So you go to the bathroom weeping in frustration and anger, you take off your Clark Kent glasses and you put on your Superman cape. Retching in fear, you step onto the ledge and throw yourself into the maelstrom.

Surprise: You can fly.

Like Dr. Martha Herbert says, our kids are canaries in the coal mine. Let's tell our stories this coming April, Autism Awareness Month, not as victims but as prophets and heroes, champions of hope, truth and justice. The tide will turn. Perhaps it already has.

CindyPDX

Thank you for posting about this Kristi! After reading your article, I jumped on over to the link, logged in on Facebook, and became a fan of NAA. THEN I was able to vote. After that, I was able to see the powerful video you speak of that brought me to tears. (wow, very powerful!)

I then tweeted about it over on Twitter, then sent an email to family and friends about this. I wish I could have shown them the video clip first as it would surely motivate them to vote on Facebook, but I also explained that in the email.

4Bobby

I voted for NAA

nhokkanen

I'll gladly give up a bit of my "privacy" if it means that I'm helping NAA get $1,000,000 to help other families.

Tanners Dad

Thank you Kristi. My head is spinning. I voted for the NAA and asked others to do so also. It would be a great thing.

I have tried many different ways of marketing our cause. I currently find real conversations have the most impact. Going viral is a mystery the marketers would love to have the key to. I wish my son were recovered, financial situation, insurance situation, and a few years of therapy. I am Angry. It is hard to market and not let that show through. I would love to see a follow up piece. I have some friends on the web that have told me to go in that direction. They especially get up set when I compare Autism to an Earthquake, Hurricane, Tsunami, Tornado, or other natural catastrophe. Happy news does not seem to go viral unless you are doing something never seen before or really stupid ( I guess most of the world has never seen recovery from Autism ... Tell me more) Sorry for blabbering on... Tim

lj goes

Thank you Kristi. So well said. It is hard to sell autism recovery because of the multifacet approach, the "unconventional" treatment and most off-putting--the long, bumpy and exhausting road one has to travel to get there. It's hard to "feel" good consistently over the course of several years or to brag to one's friends, "Hey, I paid for one OT session for an upper middle class kid with pdd-nos!" It will happen though. Through pioneering efforts like your own!

Robin Nemeth

I read The Hidden Persuaders a while ago. I remember reading about how one of the most powerful ways to persuade is to make people feel good about themselves.

Well, how about we learn from history? When the Jewish people were being fed into the ovens by the tens of thousands in Nazi Germany, how were the German people made to feel better about themselves?

Denise

I do not have a facebook account but made one just to vote. I suppose you could make another one temp for the vote. Then I deactivated it. I wonder if that would invalidate your vote?

John M. Hemenway (Bedford, Virginia)

You gave up your privacy long ago when you joined facebook and started inputting data.

ANY information you have posted to facebook is ALREADY public, and don't think that you can erase any of it, because it has all already been archived at multiple locations as a matter of routine network administration practice. So don't let the privacy issue keep you from voting for a good cause.

Besides, the insurance companies already know we have autistic children and they already have all the data they need to black-list each of us, and our children, for life.

How is Chase going to abuse your data to harm you any worse than that?


Coralie

Certainly this problem with privacy of materials is why I couldn't vote, and couldn't ask my friends to either.

Kristine

It would be terrific if NAA could win this $1mil!! Think of all the good they could do! I encourage anyone who has facebook to vote and post on your wall to convince your friends to vote. I know it's such a pain to add things to your facebook, but this time it is really worth it.

Jenny

Sometime over the past few days I saw the number of people with ASD put somewhere around 680,000 or so. I, myself, was not even on Facebook until I decided to vote. One is not even allowed to vote unless one joins Facebook. Even if there are so many out there not on Facebook, how many relatives of people with ASD are out there that have email addresses? How about sending an old fashioned email alert out to those folks begging them to join Facebook and register a vote? With a base resource of 680,000 people, winning this event should be a no-brainer!

Anne

I think part of the problem with people not voting on NAA’s Chase Community Giving link is that when you try to vote, you have to give them access to all your personal facebook info (ie friends, photos, etc). I like to keep my facebook info private. Anyone figure a way around that?

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