Connecticut Works on Autism & Disability Employment Legislation
Joanna Weiss on "Autism's Unblessed Scientists"

Autism One: Just Like the Series Finale of Lost but with a Better Ending

Lost-google-text By Kent Heckenlively, Esq.

I don’t think it’s a secret that most of us live in relative isolation.

I know I feel that way.  I write my articles, send them off, and wait to read the comments.  I realize I’m part of an amazing community but what I’d prefer is that all of you lived close by and might drop by for a beer after work.  Or maybe with a couple guys I’d go out to see the latest action movie.  Or on an early Sunday morning a group of us might squeeze in a round of golf before it got too late and the wives needed us to tackle the latest honey-do list.

But that’s not our lives.  We have children with autism.  Even those who have “recovered” their children still face significant challenges that they work on every day.

And so in place of friends who stop by we might have the shows we watch to give us a sense of community and comfort.  For the past seven years I’ve been addicted to Lost.  Even if you’re not a fan you know it’s about a bunch of people who survive the crash of their plane on a mysterious island. 

The series was rich with characters and the mystery of the island seemed to constantly switch from science fiction to a spiritual saga.  (SPOILER ALERT) In the series finale you found out that most of your favorite characters are dead and the past years had essentially been purgatory as they worked out their various problems.  On paper it doesn’t sound that bad, but for me it sucked.  I’m all in favor of spiritual victories, but as somebody once said, “Dying is easy. It’s living that’s hard.”  I know my daughter has a beautiful soul.  I’m just hoping that at eighteen she’s not still wearing diapers.

But as the series finale of Lost brought back all the characters people loved, I was finally able to meet so many of you that I’ve known only through the internet.

For the first time I actually shared a meal with some of my fellow leaders in the Rebel Alliance, the editors of Age of Autism.  And they even picked up the tab for lunch!  Let’s see, I think I’ve probably written about a hundred and fifty articles, I had the Chicken Caesar and lemonade which totaled around fifteen dollars, which means my rate of pay is roughly a dime an article.  They say anything you get paid for means you’re a professional so it looks like I’ve now crossed that threshold!

And with a nod to vanity it was wonderful to meet so many of you who have read my articles and realize I have a reputation as a straight-shooter.  I can’t claim to have been much of a rebel in my life, although I’ve always been known for honesty, so I guess in dark times that turns people like me into rebels.

But what was most encouraging to me was to get the latest updates from the many fronts of the autism war.  I enjoyed listening to Dr. Andrew Wakefield’s presentation and being able to spend time in his presence and get a feeling for him as an exceptional scientist and human being.  I think what was most humbling was to hear him say, in light of all his troubles, that the difficulties we may encounter individually pale in significance to the greater drama of healing our children.  The decision in the GMC frees him to speak publicly and he will win many converts.

I was excited to hear Jenny McCarthy’s keynote address and learn that funding had finally been secured to do a thorough vaccinated/unvaccinated study.  It’s nothing less than criminal that decades into this problem the government has not funded even basic science into this question.

It was great to meet some of my fellow lawyers and hear about the great work they’re doing.  I’m thrilled that I will in all likelihood see them again later this year when the Supreme Court takes up the issue of the Vaccine Court in the case of Bruesewitz v. Wyeth.  This single case has the possibility of reversing a quarter-century of the vaccine industry escaping the legal scrutiny which is given to every other industry.

I confess that many times in the past year I’ve felt disheartened over whether we’re going to make real progress against autism, especially given the forces arrayed against us.  I do not feel that way now.  There is so much ferment going on that I believe the next year holds great opportunities.  The chance to push the public debate forward in the next year is amazing, as is our evolving understanding of how to help those children for whom recovery has not yet come.

For all of you who are in this fight, we have won the spiritual battle.  Now we will win it in the physical world for our children and generations yet unborn. 

All in all, I think it’s going to be a much better ending than Lost.


Kent Heckenlively is Contributing Editor to Age of Autism

Comments

Cathy Jameson

What a treat it was to meet you, Kent! I have always looked forward to reading your articles. Having the chance to sit with you and the other writers at the lunch and at the AoA presentation with Dr. Wakefield was a dream come true. I wish we never had to be a part of this alliance, but I'm glad our forces are strong--strong enough to continue to work for our children while educating the masses about this thing called autism.

Cat

Molly

Thanks Kent for a great post! I too loved looking around at everyone's names on their nametag and putting faces to those I see posting all over the internet, especially at A of A. Going to the panel discussion A of A hosted was like going to see my favorite celebrities. You know, Brad Pitt, David Duchovny, and let's not forget my favorite, Robert Pattinson. It's very cool to see you all in person. And your thought on Dr. Wakefield are dead on. I could not have said it better. When he sympathized with us parents, it brought tears to my eyes.

Thanks!

AutismComic

Crap Kent, I've been plotting out the LOST analogy to autism for months in my head now, just never had the time to write it! Just like the castaways, we all found ourselves in a survival situation regarding our injured children and it became very clear to many of us we needed to "live together or die alone" in order to get this important work done. Thanks for all of your hard work! Namaste!

Holly M.

Both my kids are recovered from autism yet suffer from brain damage. Both have central auditory processing disorder and my son has dsylexia. Along with HBOT, diet, etc. we did 144 rounds of low dose DMSA/ALA over 3 and 4 years with my kids and we chelate during the summer. So we are not out of the woods. This year we are shelling out $35,000 for a special school and hour away for my son and trying to help my daughter with severe CAPD.

Adriana

It was great meeting you Kent and I love the analogy, though I missed the series (there's always Hulu). Count me as another who reads everything you write.

We can all relate. The conference was such a radical change from autism/allergy prison camp-- there were so many extraordinary people and powerful ideas circulating in such a short time that most people were propped up on sheer adreneline. Many slept little, picked at food because it got in the way of conversation, barely needed caffeine to keep going.

Those who are used to it don't show the effects but it was easy to spot the conference novices like me. I saw the full range of reactions among the attendees, from elation over finding consensus, to quiet nervous breakdowns as it finally dawned on some what had happened to their children. And always there was someone right there who understood what it was like. It wasn't the place to go through anything alone.

In a good way, it was too much wattage for me-- I was pretty strung out after five days and dumped a venti coffee under Dan Olmsted's feet on the airport shuttle. A nice slapstick finish for the conference and a great punchline--I apologized, told Dan I was operating on no sleep and he said, "You can sleep when you're dead".

We're not dead yet, we're not in purgatory and we're not going away, that's for sure. And after what I saw at that conference, I think you're right about how this ends.

Hasta luego companero.

Philosophy of Religion Fan

Agree with Leila on the Lost ending.

Conversations with God theory of existence seemed to be well understood by the show writers - imo. Especially with all the "I remember" and "thank you...[for that experience]" dialogue. CWG ideology is that basically souls get together and decide what they want to experience good and bad and all agree beforehand to come into each other's lives and give one another the experience we desire.

If CWG is right, we'll all be thanking Offit in the afterlife for giving us the experience we all sought - a chance to spar, use our creative brains and fight a war against a terrible injustice to children. Oh, and the myriad public health officials who've turned a blind eye and let the epidemic happen, we'll be thanking them too - because we pre-decided we wanted to feel complete devestation, helplessness and hopelessness at this tragic and preventable childhood epidemic.

Even Jesus said, bless them all, each and everyone belongs....

Please don't shoot the messenger here - just passing along CWG theory as it applies to Lost and giving an example of how it would apply to the age of autism.

Personally I'll be saying my thank you's to the AoA staff and heros in the informed consent camp - can't imagine thanking the darkside...

4Bobby

I always enjoy reading what you write...thank you and please keep up the great work...

Rebecca

You said "even "recovered" these children still face challenges they deal with everyday.

I'm glad to say for many, this is just not true. Mine is recovered; sits in a typical public school working above grade level, makes the honor roll every time, NO food restrictions, allergies, mood problems, OCD, health issues or learning disabilities. She has the same best friends she made in Kindergarten.

We did no therapy of any kind. No ABA, OT, RDI or PT.

We did not follow the Dan! protocol, which, forgive me, is flawed.

We did chelate; small doses of Dmsa/Ala evey 3 hours brought our formerly pdd-nos girl completely back. And we are not alone.

It was not easy, 188 rounds of getting up each night to give the chelators but it's no harder than anything ive heard a lot of people do. And there are no everyday struggles here. They're gone.

And we are not alone, there are lots of completely recovered kids whose parents did their own research and found a way to get them completely back.

CarolynKylesMom

So many awesome posts here! Lisa, I loved your post about disease not God's intent. I remember when my dear, wonderfully kind father died of pancreatic cancer and I later read about caffeine and high carbs contributing to that disease. . . and I thought too, it's the ignorance of us all not eating as God intended us to or living as God intended us to that caused my father to suffer so from the innocent sin of drinking coffee all day! Put the selfishness of those who profit knowingly poisoning others, on top of all that we do unaware and you have the answers. . That if we can learn to treat our earth and our bodies and each other with love and respect, and make that our highest goal (the message of every true prophet religious leader since the beginning of time) --we would still be in the Garden of Eden . . .there would be no disease or injury . . . imagine!

Lisa Jamm-Booth

You said:

"recovered” their children still face significant challenges that they work on every day.

Have to say I disagree here. My son is not yet recovered, but we don't endure "significant challenges" everyday--not by a long shot.

I expect that the diet and endless supplementation will be a thing of the past, as therapies and autism symptoms are.

It might be more helpful for our community to truly define RECOVERY. Propping kids up with band-aids for mercury poisoning is not recovery.

Mercury removal is the answer for MOST of us! I sure wish I'd known before I too spent our savings on ABA, OT, ST, and the standard DAN package.

Now just a little ALA and DMSA every 3 hours brings us closer to true recovery every day.

whysomanysickkids?

“recovered” their children still face significant challenges that they work on every day.
Ken, I am so glad you said this. It is so true.
Tho' we have language now and behaviors nixed the massive assault to our finances to the tune of 150K, retirements and home equity vanquished is still an everyday crisis.
Then the fact that re-injury, diet and the constant learning support might be a forever challenge.
It is hard to express this when so many are in a worse place but you feel robbed.
Had we been given the choice and information on the massive amount Mercury in my child's vaccines I would have opted out for safety reasons, never imagining how bad it had been these last 7 years.
But we didn't get that option did we?
Grateful for recovery, working two jobs to cover it.

olerist

Darn it, I wanted to meet you and talk but got wrapped up in working.

Cynthia Cournoyer

Maybe living with autism is just a "side-ways reality."

Joanna

Thank for explaining the ending of Lost. It wasn't a spoiler - I was still lost! And I'll be right over for that beer!

michael framson

Kent, Your writing and everyone's writing at AoA, comments included, have been the "chicken soup" for our survival, made of the best ingredients: Honesty, integrity, and doses of essential humor.

The sequel to Lost.....on vaccination island, will be a purgatory of lost souls (a very, very special cast of denialists) playing themselves. All of their evil words will be played back over and over and over. I can just see Amy Wallace beating the crap out of Paul Offit for getting her stuck on the island. A kind of Fantasy Island with a twist.

lisa

Kent,

I certainly know how you feel being a lonely activist. I have worked as an activist in another field for a long time. The loneliness has at times been unbearable. But I heard a preacher once say that God does not surround us with family and friends and cheering crowds when he decides to save us. He sends us away to a big empty field where, in our abject loneliness and isolation, we are at last made privy to the mysteries of God and the universe. In my lonely journey the one mystery that has already revealed itself to me, at least in part, is the mystery of suffering, and the realization that much of what we suffer here on Earth is not what God intended for us. Rather, it is caused by the selfishness and ignorance of man. This has been a very important epiphany for me because I used to think that all these diseases were just part of the human condition and that there was no cure, nothing we could do about them -- kind of like what our modern-day pediatricians think about autism. I don't believe that at all anymore. I don't believe this is what God intended for us, and I feel certain he wants the truth to come out, and the heeling to begin, much, much more than we do. This gives me great hope.

I know you said you didn't like the ending of Lost, which it seems a lot of people didn't like particularly because of its religious overtones. I hope this post doesn't sound too preachy. Sometimes it helps me to substitute "Mother Nature" for the word "God." I tend to think of them as one in the same, but somehow "Mother Nature" is more accessible to my small mind.

On the subject of hope, I, too, am very eager to hear more about the newly found funding for vax vs. unvax study. Please tell us everything you know. Who is funding it? Who is going to do the study? How difficult will it be for the CDC/big pharma to bury the results? Is it being done my a reputable research team? Who is going to publish the results?

I am also wondering what is happening with the primate study. Have Wakefield et. al found another publisher? When will we see the final results of the full study?

Thanks in advance for any information you can provide.

bensmyson

It seems every other week I have a "Lost" moment where my world is surreal. I know Im alive but sometimes the coincidences, the event itself, the living/breathing metaphors with strings and ties that reach into another world make me believe I may be asleep... or lost.

I watched a piece of a movie this weekend where Dennis Quaid is a firefighter that died the day after the Mets won the World Series in 1969, his son 30 years later connects with him on a HAM radio, the connection alters time and events. Everything it seems ties me to my little island where I live lost. I am on that radio everyday, SETI, hollering out into space waiting for contact, longing to hear my son, my father, God, anyone that can change the future, to bring me back, to heal my son, to connect to the lost. I fully expect one day to have my life stop for a commercial break.

We'll be right back after this message.

Trace

Thank you for this encouraging post. I am thrilled to hear about what is going on with Autism One. Very exciting and it shows that the autism community just gets stronger and more organized with time. We will prevail! Thank you for all of your hard work and for keeping us informed Kent!

Carolina Eberstadt

Dear Kent,
Lost? No, I never saw the show on T.V., but yes I have felt lost, tired, depressed and extremely sad with the autism my son has, now 15.
Please, go to sleep everynight with a smile, knowing you are doing wonderful things not only for your beautiful child, but for so many others around the world. We live in Mexico City and through web pages like yours, we can learn the latest on autism and help our children. Feel blessed since in the U.S. you have so many government resouces you can use for the wellbeing of your family.
Best regards,
Carolina Eberstadt

Jeff Ransom

Kent, I have enjoyed reading your articles for a long time now & your comment about being paid a dime per article & now you are a professional, made me laugh out loud, that was so funny, because I have done things in my life & got paid and it was so little so I would sometimes tell myself at least I did get paid and that makes me a professional. In my opinion your are definitely a professional!

But you wrote "funding had finally been secured to do a thorough vaccinated/unvaccinated study" I do not know how I missed this, I read AOA almost every day, when you say "SECURED" how "SECURED" can I jump in the air and click my heels "SECURED"? Could you or someone point me to more info on this. Would like more info on the Supreme Court takes up the issue of the Vaccine Court in the case of Bruesewitz v. Wyeth.

Thanks

KKauffman

Kent - while I was not a Lost fan, I do liken this epic battle of good vs. evil to Star Wars. I feel as though I am part of the Rebellion up against the Evil Empire, big pharma. I'm stationed way out in the Hoth System, it's cold and lonely here too. I so wished I could have been a part of Autism One last week, to meet and be inspired by the leaders of our Rebellion, however, funding and lack of vacation time kept me at my post. We did celebrate a victory two weeks ago against the Empire. My nephew, Alexander, was not given the Hep B vaccine at birth and will not be vaccinated any time in the near future. Three cheers for saving a child from autism! I will continue to fight from my Hoth post, which is becoming easier each day with my son's recovery. May for the force be with you and all of us as we continue down this path less traveled.

Kim Davis

I'm with you Kent, the ending of Lost sucked. What makes it better is knowing that the ending of the autism saga might not suck as much. Thank you for letting me know there will finally be a vaccinated vs unvaccinated study. Thank you for letting me know that our group is energized and ready for the fight ahead. Most importantly, thank you, thank you for letting me know that I'm not the only one who feels alone.

Leila

Kent, they weren't all dead. Jack died, and when he meets his father on his way to "eternity" or whatever, the other souls from people he met on the island are there too. Some of them, like Kate, Claire, Desmond, and Sawyer, will die AFTER Jack, but hey, that's eternity and as Christian explained, "there's no 'now' here".

I wish the best to your daughter.

Verify your Comment

Previewing your Comment

This is only a preview. Your comment has not yet been posted.

Working...
Your comment could not be posted. Error type:
Your comment has been saved. Comments are moderated and will not appear until approved by the author. Post another comment

The letters and numbers you entered did not match the image. Please try again.

As a final step before posting your comment, enter the letters and numbers you see in the image below. This prevents automated programs from posting comments.

Having trouble reading this image? View an alternate.

Working...

Post a comment

Comments are moderated, and will not appear until the author has approved them.

Your Information

(Name and email address are required. Email address will not be displayed with the comment.)