The Political Alienation of the Autism Parent

By Kent Heckenlively, Esq.
 
There was a time when I thought politics mattered.

I saw our country as a place where differing ideologies battled in the marketplace of ideas with the best one winning.  I could imagine good people on either side of the political divide, but at the end of the day there were clear differences.  My father set a good example of always having an opinion on current issues, but never failing to engage respectfully with people of differing opinions.

But as the debate over health care continues to roil our country I find myself disinterested in the controversy.  What will happen if the government gets into the health care business?  Probably some bad things and a few good ones.  What happens if our health care system stays the way it is with some tinkering around the edges?  Probably some bad things and a few good ones.  The challenge of solving autism doesn’t enter into either side’s political calculation.

I used to believe that any halfway decent cause would get picked up by at least one political party, if for nothing else than to have a club to hit the other one over the head.  I’ve always understood self-interest.  So as President Obama took the stage I thought, “Well, maybe this will be something he can fling at the feet of the evil Republicans and some good will come of it.” 

Then I remembered I thought something similar when George W. Bush took over.  Maybe this will be a way to get back for those tawdry Clinton years.  And before that I wasn't even thinking about these issues.  But I’m sure there were those who were dealing with these problems, thinking that maybe the “Man from Hope” could undo the terrible vaccine decisions made during the first Bush presidency. 

And so it goes.

As Obama seems to be making deals left and right with the pharmaceutical companies to get their support for his health care bill I have little faith that our issues will get addressed.  Will anybody in either party have the courage to tackle an affliction which is striking 1 in 100 children?  Can any of us parents recall our elementary, middle, or high school years with numbers at this rate?  Did we ever even hear about autism?

I understand the need for Age of Autism to stay away from either political side, but this is something of an entirely different nature.  This is alienation from the political system in its entirety and I don’t think I’m the only one feeling it.

I can turn the television dial from Fox News to MSNBC or pick up papers from The New York Times to The Wall Street Journal and not see any urgency to address this problem which is striking our children in record numbers.  I keep thinking I’m in one of those science fiction movies with pod people in which everybody around says “Everything’s fine.  Just go to sleep and everything will be fine.”

But I can’t sleep because I worry about my child.  I worry about the damage which has been done to her brain, and as so many recover, I wonder if she can.  Will she ever have friends?  Drive a car?  Go to college?

Maybe one of the negative things which has happened as our political discussions have become so sharp is that we’ve substituted ideology as our litmus test for people instead of character.  I’m sure all of us know people who say things like “I could never be friends with somebody who thought . . .”, or “I’d never date somebody who . . .” and yet that sounds like such a bland world to me.

I don’t know what to tell you about our political prospects, except I don’t think they’re going to let us into the party.  We’re going to have to crash it.  And I hope to someday crash it in the company of all of you. 

Because at the end of the day I don’t think it’s about politics.  I think it’s about character.  The character of people who are trying to solve a problem arrayed against the character of those who turn away.

I believe in all of you more than I believe in any political party.

Kent Heckenlively is Contributing Editor of Age of Autism

Comments

[sarahsam]

Hey Chris-do you think I can ABA away my sons food allergies and gastrointestinal disease? His malabsorptio problems and his mitochondrial disorder? Maybe it will open up his detox pathways and rid him of the excess mercury and lead in his body?

[PhillyLisa]

Tom, Terri is on here talking about your your denial of the vaccine injury basically leaves her isolated in helping your son. How effective can she be if she's doing it all alone? It's really not about you or your feelings.

And Chris, what evidence do you have that chelation and HBOT are torture? Many kids feel great after both and even look forward to them. I would say, for my own daughter, ABA is torture, not to mention anxiety-inducing and completely ineffective because it doesn't address the medical issues which resulted in her autism. You can't train away immune damage. Trust me, we've worked with the best people in this area and got nowhere, until we addressed her medical issues.

[Chris]

To Tom Lewis,

Stay the path, sir. You're right and your wife is wrong.
I'm a parent of a child with autism. He was diagnosed at two. He's mainstreamed now in Kindergarten and according to his developmental pediatrician he will probably lose his diagnosis by the time he is eight.
How did we do this?
Hours and hours of ABA (advanced behavorial analysis), speech therapy and OT. At our peak, we were spending 40 hours a week on his therapy. It seemed like it would never get better. But it did.
I know how scary this is for a parent.
BUT VACCINES DO NOT CAUSE AUTISM. And all of these chelation therapies and the oxygen chambers, etc. is just quackery designed to take your hard earned money.
I know that most of you wil think I'm a sub human monster but I love my son and I did what's right for him. He's doing well and he's going to do better because we are using the one scientifically proven method of treating autism: ABA. And if one parent out there hears me and stops torturing their kids with this quackery, this letter will be worth it.

[Benedetta Stilwell]

Tom,
I am sorry
Terri
I am sorry
You both need to either talk it out or get counseling.You have to fix this between yourselves.
I do not know what the circumstances of the vaccine injury was for you
For me - I watched my son have a stroke a few hours after his DPT sht and that night I rushed him to the hospital. They sent us back home before my poor husband even got home from 16 hours shift. Can you believe they would work some one that hard!
He did not get it when I told him. He went straight to bed. It was my fault for not following up, and life's fault too!
He did not get it 1 year later when I told him the doctors were saying it was not the vaccine.
I was going to let it go, but the injustice, my heart, my brain screamed and would not let me do it.
Two years went by and it built up! I have never before not been able to let something go when I made up my mind to do so. This would not let me go.
Four years went by and it broke like some great river over a dam!
And I sat my husband down and replayed the whole sorry mess.
And being the good man he was he said he believed me.
It was a small thing, it did not change anything, but some how I felt better.
At the end of that fourth year my husband stepped on a nail, he had already reacted to a previous tetanus shot (at least he thought that was the cause)of him seizing all night long (he was alone that night)!
I told him not to go in for the tetanus shot.
I told him that his foot had been operated on it and they had opened it wide open and surely they had cleaned it enough.
So he went in and told them. The nurse told him that he could get the shot and sit around and see what would happen.
Nothing happened and he came home to a very disturbed wife!
Three weeks later ever muscle in his body ached. He could not breath. The little- bitty writing that comes with the tetanus drug says reaction in three weeks (by the way)
That is how it has been for the last 26 years.
He has worked sick, then goes to the emergency room because of low oxygen!
I have done it all when it comes to the house, the children, the farm, plus my job.
We have hung on.
He is a good man, a deeply religous man, a kind man, what would I do with out him?.
He may not have gotten my son when he was little. I do not think he understands my son even now, because my husband is very highly intelligent and he does not understand the thoguht processes of an autisitc man that behaves like a 12 year old. He does not understand my son staying in his room and not helping on the farm more than he does. But he is kind to me, my son, my daughter, my parents.
I hope that you both will be kind to one another, you are breaking my heart to hear this.

[Tom Lewis]

OK, if my wife is allowed to comment on me here personally, I hope at least I can reply.

Because I see the vaccine evidence differently from her, Terri has referred to me as a Nazi. She tells me that I am the moral equivalent of a slaveowner. She has told me many times that she hates me and “recoils” from me.

Did you see that? She hates me. Hate. Her husband. Hate.

All of this, because I disagree with her about vaccines.

In front of my children, she has repeatedly called me an unfit father. In front of them, she has said that if something were to happen to her she wants someone else to raise the kids. Almost daily, she suggests to my children – sometimes explicitly, sometimes implicitly -- that I don’t care about them or their health.

She’s told me that she fears for my childrens’ lives – because I don’t agree with her about vaccines.

Sorry, this is not normal. Because even if Terri is 100% right about everything, the level of rage and anger she’s directing at me is unnecessary. I’ve met plenty of people who hate vaccines and hold them responsible for their children’s autism, and yet don’t direct that hate toward their families.

I know Terri has learned at AoA to vilify everyone who doesn’t agree with the vaccine-autism connection – it’s not uncommon to find “denialists” referred to as subhuman monsters here – but unfortunately my kids and I are experiencing the consequences. I guess it makes you guys feel good to toss around incendiary rhetoric. It doesn’t feel good to me. And I fail to see how it advances your cause.

[Benedetta Stilwell]

Terri!
Your husband, your friend, the father of your children are like all men (okay most men) (okay just my husband). IT is not that he don't believe you it is just that he is so busy with his job, and he has kind of given the job with this autism deal over to you. Men don't usually get it untill the child gets some what older, then they start getting it. Husbands are hoping it will be out grown and they have a lot of faith in their wife's ability to handle it. About the time my son started getting big, hard to handle and my husband began to get it he changed his job position that kept him on the road all the time! So I picked myself up and cherished that I was not really alone because my husband kept us finacially stable giving me the luxury of working with my son full time. My husband did what he could. So be patient with your husband, you are in it together.

Every body else tell them --- well being a lady I won't say it!

[Amanda Blinn]

I see a post about what Autism Speaks does to amend a bill. They don't speak for my autistic son because they won't spend their resesarch money on heavy metal/mercury poisoning. Being involved is a good thing if you have energy left over after advocating for your child and it's better to organize and band together--just not under the banner of Autism Speaks, which has wasted precious time and YEARS.

[Steph M]

Terri,

Your not alone sister...

[Terri Lewis]

I probably speak for a lot of people when I say: the political alienation is the least of it for me.

Yes, I feel alienated politically.

I am also alienated from:

a friend who told me, "They did a study linking autism with too much TV!"

another friend who thinks I'm nuts--and won't even discuss it--because I say my son is vaccine injured

doctors

nurses

teachers (most of them)

a friend who sends me a link about "accepting" my son's autism

the friend who's "helping out" at the swine flu clinic at school

the aunt of the autistic boy who didn't believe her sister and vaccinated fully because "what else can you do?"

and last but not least:

a husband who saw and understood the link between toxins/mercury/vaccines and his son's autism, but has since decided to put his head back in the sand regarding all of the above.

And you know what all of these people have in common?

None of them loves my son, or my other kids, the way I do.

None of them has witnessed firsthand or saw the lights go out in his eyes--day by day by day.

None of them had to figure out what was wrong and become a therapist, nutritionist, doctor, nurse, "nut case" who carries on in spite of it all, and a woman who loves her son in spite of his fits, mood swings, inflexibility, and other lingering "issues." Which I am supposed to "accept."

Nobody, but nobody, did it 24/7 when it needed doing 24/7--not his dad, not my so-called friends, not the doctors, not the teachers--no one.

And not a one of them cares a bit about listening to me or to my understanding of what's happening--not just to my son--but to hundreds of thousands (soon to be millions) of children and young adults.

And get this--

I do it without Prozac! I do it without a therapist! I do it without new clothes, or a funky new hairstyle!

My husband has since seen fit to waste our family's money at $100 a pop to see a therapist "for him"--but I'm the one who's "messed up"!!

I'm the one who needs to change!

Holy cow, and little else that is. . .

God help us indeed, because no one else will.

[sarahsam]

I love reading your stuff Ken. I was so pathetically sure my ultra liberal views were the way to go when I was 18. At 35 I was just as sure of my conservative views and was embarrased how naive I was at 18.

Autism(vaccine injury)and the terrible realizations that one is treated to in our world has changed that and now both republican and democrat mean nothing to me.

I am a true independant.

Garbos words ring true to me.

"The people in charge are the corporations. We are living in a corporate oligarchy, not a democracy. Halliburton writes energy policy, Goldman Sachs writes the bank bailout bill and Wellpoint & Pharma are writing the health care legislation. This isn't Nazi Germany or even Vichy France, it's Rollerball."

I live in rollerball world.

Many here think when the costs incured due to the autism epidemic get high enough the powers that be will finally take action to treat and prevent autism. It's more likely they will cut services and vilify us-and sell it to the public as "needed to save the medicaid (or whatever they call the healthcare program at that time)system from bankruptcy".

I mean we do have 20 million undocumented people to cover and I'm sure that once that is done millions more will come for the "free" healthcare. The baby boomers have had no problem voting themselves benefits that will take generations to pay for happily borrowing all the way. They will give up nothing without a fight-and there are a LOT of them.
Sooner or later the 20 somethings are going to realize just how screwed they are and then it will be ON!
This will generate a HUGE fight. I fear our voices could easily be lost in the noise. I will vote for and support the candidates that show promise for the disabled. I'm a single issue voter and I do my homework-deeds speak louder than words and words from a politician mean just about nothing at all. A voting record however is hard to run from.

[Elizabeth]

Yesterday I was substituting as a playground supervisor at an elementary school and this little girl was at an outside chalkboard writing "mom" inside of a heart with an arrow through it. I told her it was cute and then I thought I would write something on the board too.

I thought of things from my childhood, ah yes "Proud to be an American" that was a good one...then I paused, I couldn't write it - what a weird feeling, for the first time in my life I believe I actually felt I was not proud to be an American. I want my country back, I feel like I am losing it so fast.

[Eric]

Thank you for writing about how I feel.

Eric

[Ken Siri]

Kent,

All too true and sad. Crashing the party is the only way. A little while back I wrote of such an idea, screening candidates for each office by three criteria (agreed upon by the autism community, i.e. safer vaccine schedule, insurance coverage, etc.). Whichever candidate would meet our needs would get the pledged (community votes in lockstep on this one issue) autism vote. If the community banded together and included grandparents, caregivers and the like, one could get to 5 to 10% of the vote in any given election, enough to swing a vote or two and make the parties take note.

Cheers,

Ken Siri

[Ted Van Oosbree]

Autism parents face a formidable triangle of political opponents: the Healthcare/Pharma complex (generally a Republican constituency), the government Healthcare bureaucracy (generally a Democratic constituency) and the increasingly concentrated Mainstream Media (traditionally a Democratic constituency but increasingly dependent on corporate goodwill and money). These gentry have little or no interest in probing the causes of or solutions for the autism epidemic unless they see a monetary angle to it (e.g., more money for genetic research). Many of them won't even acknowledge that there is an epidemic! If this problem sounds familiar it is because it is the general predicament of the country: entrenched interests perverting public policy and doing the country great harm in the process.

[dugmaze]

Steph,
I thought the same thing. All the events in the story led me to believe this child may have some type of ND. Especially when the kid who started the fight mistook the victim's words and their meaning. Sound familar!
I wonder if the autism community is becoming the new minority. I hope that's not a racist statement. I don't mean it as one. But we're seeing harassment, discrimination, and isolation more common in our society.
Being involved in autism community has changed my views of disabled people and minorities. I thought I used to have compassion, but now I see how little I had.

[bensmyson]

"...brought on my weakened immune system..."

"my" is a typo.

[bensmyson]

Autism, ADHD, Asthma, major motor seizure disorders, illness brought on my weakened immune system etc feed the economy.

16% to 18% of all children are considered to have significant special health care needs. The health care expenses for these children constitute as an economic stimulator, it is estimated that 80% of all health care expenses go to pay services for 16-18% of the child population.

In many States autism is not something the insurance companies recognize as a reimbursable health issue. This means the costs of services are passed on to the taxpayer. For every dollar spent on our children by various governmental programs, $.76 is allocated, on average, for administrating those services, our kids get less than 25% of that money.

I was told the other day while begging for help, "We understand, we are all parents here." to which I replied, "How many of you have children with autism? You don't understand, you can't unless you live it."

It is the news stories, the documentaries, the logos on race cars, the Jenny McCarthys, the parents, us, we have to be visible and write our local media outlets, stay on top of them, it is the public that needs to hear our story, to know our kids, and THEN we will see a change. Until then, they don't live it, they don't know.... unless we show them or it happens to them.

[Kristie Renee' Sepulveda-Burchit]

Maybe instead of focusing on feeling like an outsider get involved to make a difference in health care reform. It's happening with or without us. Make your voice heard! Take a look at www.autismspeaks.com they put a bill up through the House as an amendment specifically for autism treatment. Get organized and do something, don't stand around and gripe about it! Take action!

[NAK]

All I can think of one day people will be singing "Where have all the Flowers Gone" with new meaning. Wait until the rate of autism is 1-10 maybe they'll notice. An epidemic; We're breaking out with bad genes?? They'll even invent a vaccine for it and call it a pandemic. Just wait this isn't over yet. Keep your faith strong. Pray to God everyday.

[Steph]

I think that you can include the media in with the politicians too alienating autism parents. After watching this video only one time, I suspected that the child that I was watching being beat was autistic. According to other posters in Belleville, he is. This makes me so mad and so very very sad. I suspect the media wont report this and let it go as a "racial" story.

http://www.stltoday.com/stltoday/news/stories.nsf/illinoisnews/story/1586F1C3B8DACF3786257635006BC3A8?OpenDocument#tp_newCommentAnchor

[michael framson]

"...and in the eyes of the hungry there is a growing wrath. In the souls of the people the grapes of wrath are filling and growing heavy, growing heavy for the vintage."

We are oppressed
We are lied to
We are stonewalled
We are circumvented
We are dismissed
We are disrespected
We are denied justice
We are discriminated against
We are demeaned

But we are smart....much smarter than we were before

We are strong and getting stronger

We are many and becoming many more

We are honest

We speak the truth

And we possess a greater wisdom than we did before

Our eyes have been opened and it has been horrendous

Our children have suffered a profound injustice that has tested our ability to remain civil.

The government has failed us
The media has failed us
The medical community has failed us and are now trying to bury us by burying our children.

But we are powerful.....and we are the many.
....the forgotten, the sick, the hungry, the foreclosed, the disposesed, the unemployed, the uninsured....the people

We are not corporations, but we are the people

We are not paid lobbyist, We have paid with our heart.

And we and our children and OUR future will win

[Lin]

Thanks Kent! All I can muster to say through tears is I resemble that remark. It has become so very painful and our political system is just salt in my wounds at this point. Thanks for speaking the raw, bitter truth for my family and so many like mine!

I believe in you too. My love for our community and the families is the only thing that keeps me going some days.

[mlinn]

Our family is politically neutral (one republican, one democratic spouse) and I’d have to agree our politics have merged over the years due to autism. I agree with Kent that the true problem facing our nation is the lack of character and the overwhelming influence of individual greed and self-interest. This is compounded by the lack of a free press and the impending collapse of our educational system. We can blame Government and Wall Street until the cows come home, but when it comes right down to it, the people making the decisions are all individual citizens. They all have choices day in and day out, and our collective culture promotes greed, accepts ignorance, and avoids accountability. I think the autism experience has taught us all that we cannot afford to stand for this. It has certainly affected my behavior, awareness, and professional ethics in my "day job." Though the task seems overwhelming, I still believe in Margaret Meade and the power of a small group of dedicated individuals. We’ll crash the party one day, and it will be grand.

[julie]

Christian Scientists have the right idea-- for the wrong reasons maybe-- but you're better off staying away from doctors and hospitals in general. I work in healthcare and have had two coworkers-- also healthcare professionals-- die recently from botched surgery/interventions. If I were a third-world woman living in the Amazon jungle would my son have autism? No. Our so called "healthcare system" is set up to create as much disease and expense as possible. To talk of reform is pointless unless we are willing to take a hard look at the basic principals of modern medicine.

[Lisa]

Here's the problem: we want what is best for our kids, what is right and fair. We are discussing things like character, healing, coming together for the sake of the children.

As far as I can see, there is very little in either party, that is about anything other than money and power.

Who cares if some kids with "bad genetics" get sick anyway? I think that is another reason they so love the "genetic" studies. There are shareholders to report to, money to be made, corporate buyouts to build an empire of power and wealth. The companies lie and lie and their lobbyists own the politicians.

I used to proudly and staunchly defend "my" party. Either way, we get screwed - it's just a matter of which way we to take it.

http://www.sing365.com/music/lyric.nsf/Head-Like-A-Hole-lyrics-Nine-Inch-Nails/09A138569C3B157748256CC60024051E

[Kim]

Did Obahma designate someone to be the Autism Cazar? If he did I think I missed that. 1 in every 100 children, 1 in every 50 parents are affected by this, it is just to many people to ignore. When will it stop? Just think what this will do to healthcare cost in America 20 years from now?

[AL]

So when do we crash the party? You let me know the day and the time and I'll be there with 4 other parents in my truck.

[Sara]

Oh, Anna… my sentiments exactly. Like the age old adage "The love of money is the root of all evil". And it is greed that will drive the human race into extinction.

[chrissie]

Tracy, my family has been going through the exact same thing since we first put our son on the gf/cf diet 18 months ago. He was in a special-ed preschool at the time, and his teacher threatened to call CPS on us because she "felt the diet was detrimental to his health and well-being". We got the lectures on what charlatans the DAN practitioners are, and the speeches on accepting our son for "who he is". Never mind who he WAS before regression - forget that kid. We pulled him out of school (along with another family who had started the protocol at the same time) and began a home program. Things were much better, but they never really change. Jack is now in a mainstream preschool with an aide. Clearly, before she started working with us, she was told I was one of those "anti-vaccine crazies". Yesterday she aske me "Does your son have all his shots? In case he bites me?" I very sarcastically explained that autism is not rabies, it's not contagious, and as a matter of fact, he's fully vaccinated, which is why we are in this boat to begin with. Today, his new speech therapist (how I hate September) introduced herself to me, said she saw on our son's IEP that he is gf/cf, and felt the need to tell me that her nephew is unvaccinated and has autism. Every day is character building when you are the "local nut job".

[ShelleyTzorfas]

CDC acknowledges 1 in 6 kids now has some form of neurological impairment. In my area it is more. Change the TV commercial. 1 in six are ill. The reason the public is kept uninformed is because they rename it with so many different labels so that the people are left in the dark. 2 generations of lost kids, the first generation is aging out, turning around 21 years old.Who do you think will pay the price for their care? You, the taxpayer. Either pay for their care and recovery when they are very young..or pay a lot when it is too little too late.

[Garbo]

It doesn't matter who is in office, Rs or Ds or Ron Paul or kangaroos on pogo sticks. The people in charge are the corporations. We are living in a corporate oligarchy, not a democracy. Halliburton writes energy policy, Goldman Sachs writes the bank bailout bill and Wellpoint & Pharma are writing the health care legislation. This isn't Nazi Germany or even Vichy France, it's Rollerball. (The first one, not that awful remake.) Barring some unforeseen event, Autism will not be addressed under this system until it's monetary costs to the government are greater than the profits generated by the things that are causing it.

I sincerely hope my cynicism is misplaced.

[Dana]

By my own quick math estimates, there must be at least 2 million parents that have children with autism. We're not a huge force but we CAN BE. There are no easy answers for anything but to ignore the innocent children and young adults is just delaying the inevitable. Something has to change and it's up to us to continue pushing for it.

[Anna]

I was thinking about this the other day... It is not about our kids, it is not about us... it is all about money. Washington is completely corrupted because only money moves things. We've become the country whose true religion is money... The money of the lobbyists, the money of big pharma, the money of the mercury industry, the money of the AMA, AAP, and others... the money the CDC wants and the FDA too...
Where do the regular people fall in this picture? Nowhere... and so, our children are lost to all but us (the parents who see them suffer)... And there is no interest in their suffering because it doesn't bring money to the table.
But we are destroying ourselves as a country.

[Renee H]

I was just thinking today that the government will never acknowledge how serious the autism epidemic is. Admitting there is a problem would mean they also would have to answer questions about where the issue lies (immunizations, etc). This makes me really sad. I was brought up to trust in our country and trust in our health care system. Boy was I wrong! When I became a mother, I had NO idea I was also going to become an autism specialist, a speech therapist, an occupational therapist, an advocate, a medical professional (making decisions about vaccines, treatment, etc), the list goes on and on... But I will do whatever it takes for my child.

When it comes time to crash the party, I'M IN!!!

[Gatogorra]

Tracy McDermott-- makes you wonder who the "boundary autists" are in the schools. We've learned to beware of any education or medical professional who tells us they "care" about our children. If they say "really care", we run.

[Benedetta Stilwell]

Kathy your kids are older. Do you have problems getting your son to move?
Does your son still get sick and claim he can't move, or his stomach hurts or his chest hurts.
Problems here?
Just wondered.
Benedetta

[Kathy Blanco]

CM, we all should have voted for Ron Paul, he would not allow this shit that is taking place with this scare mongering, and looking away from good science. He wouldn't allow our rights as citizens to go bye bye like this...it's happenign folks...watch what our world will be like in a few years...we won't recognize we are in American anymore, more like Nazi Germany.

[CM]

I'm not sticking up for republicans, but democrats also have a history of bad vaccine policies too.

The Clinton administration pushed to increase hep B vaccinations:

"The Childhood Immunization Initiative (CII) is one of many Federal, State, and local programs mounted to raise vaccination levels among young children. Initiated by President Clinton, the CII established a 1996 goal of increasing vaccination levels for 2-year-old children to at least 90% for measles-mumps-rubella, diphtheria and tetanus toxoids and pertussis vaccine, oral poliovirus vaccine, and Haemophilus influenzae type b vaccine. In addition, the CII established a goal for 1996 to increase vaccination levels for 2-year-old children to at least 70% for three or more doses of hepatitis B (Hep B) vaccine."
http://www.cdc.gov/nis/about_nis.htm

I think we should all vote 3rd party next round of elections if our current elected officials don't start making an honest effort to fix this mess. I know I'm planning to vote for the Constitution Party.

[Tracy McDermott]

I had a character building autism day from hell yesterday! A simple request actually of the school nurse, just give me the medical authorization form for my son's prescription enzyme, Creon (FDA approved medicine!) You would have thought I asked for approval to distribute crack in the halls of the elementary school! Seven phone calls later, it was "approved" (huh? the law states that if it is non narcotic/habit forming rx there is just a simple form you fill out and be sure to keep the medication in the original container!) Nope. Not for my kid. I had to jump through hoops for 4 hrs. and listen to this woman overstep her boundaries on so many levels it was maddening. Apparently she had an opinion about which Drs. we see, expiremental treatments, medical diagnostics being performed, but reassured me it was only because she was so damn concerned for my son! I told myself I wasn't going to "go there", that the integrity of my character would remain in tact from start to finish - and I did okay. Just a few snide remarks like "we're not practicing witchcraft here, just treating medical issues!" But after that experience I spent most of last night reflecting on how very wrong it all was. How it is easier to get authorization for Ritalin dispensed at lunch, than digestive enzymes. How no matter how many school staff smile at me as I walk in the door, they are talking about me behind my back.
I won't stop, heck I have already been labeled as the third eyed crazy woman, so why have reconstructive surgery now! I don't need to be right, I don't need to be stroked. What I need is one ounce of acknowledgement from the mainstream establishments that the two 4 inch binders of screwed up biochemical testing in my cabinet represent 1 in 100.

[Gatogorra]

Funny, I was just thinking about that today-- and how it's been such an education and a character-building experience. My husband and I both come from generations of liberals...but I've come to know and respect many people across the political spectrum through the vaccine-injury world. As long as someone puts children first, there's going to be crucial common ground and we're going to find a way to communicate. Each will find a way to forgive the other personally for differing views on certain issues, even if we don't come to vote the same way on everything. But if someone stubbornly drinks the mainstream medical Koolade, we usually find this is not merely a minor issue but does boil down to basic character and ultimately their humanistic outlook (and, let's face it-- sanity), no matter what their surface political views are.

Crashing the party is a good idea. You can sign us up.

[Lisa in Texas]

Kent,

I will join you as a political alien. Thanks for putting into words what I have been feeling the past five years.

I found it very interesting that the political strategists recognized our potential influence in a very close election last fall, coaching each presidential candidate on how to address the autism epidemic in their public debates. If I recall, it was the first time in history that the word "autism" was mentioned 4 times during the presidential election debate. While we may not yet have the numbers of the 'soccer moms' who helped Clinton to swing the vote, we will keep becoming a larger voice, and they will realize we don't vote Republican or Democrat anymore. We vote for results.

We're waiting........How much Longer?????

[James' mom in MN]

I too, feel abandoned by a system that is so self-interested and self-absorbed that it fails to recognize what is important to any of its constituents and even more abandoned by other parents who look at me with sympathy, not understanding how easily it could have been them. I have written letter upon letter, feeling lucky when I get a form reply, and then realize how little that really means in the battle. I have tried to raise awareness, talking about my son and our experiences, trying to tread lightly so as not to alienate others completely. I often think of the editorial written by a parent (Kim S., I think- sorry if not) about what inauguration day would have been like for our President and First Lady had one of their children had autism- the bag of toys to try to occupy them, the noise blocking headphones, and the nervous feeling in the pit of the stomach that never goes away when placed into a public situation so prominently, hoping that your child can hold it together. I would not wish autism on any parent, but sadly I think it will take a politician with a child on the spectrum themselves to really make a difference. Those who are not directly affected may feel sympathy at our daily lives, horror at the amount of money we spend trying to help our children, and even wonder (if briefly)if we are "onto something" in treating our children biomedically, but ultimately they don't understand it. What's the old adage about walking in another man's shoes?

[Angie]

We Believe in you too Kent!
Without all of the GREAT parents, professionals, and other posters here we are starting to see recovery in our two sons and have stopped vaccinating our youngest when she was about 8-9 months old, saving her from her own 'perfect storm' and sliding into Autism.
Thanks to this site I have been able to accept Autism its causes and treatments and in turn give our whole family a better way of life, which is FAR healthier than what we were doing 'before'...because we were doing what 'mainstream' considered 'healthy' between diet/prescriptions/vaccines/etc...boy, were we wrong! And I am not afraid to admit it either just like all of us here, were were WRONG at some point by believing in our ped's...
Because of this site our family doc, in 'mainstream' medicine, has been able to read here, and even CHANGE some of her 'practices' about vaccines and diet/etc...even though yesterday while I was at my yearly checkup I heard a baby next door getting shots (althought I would have to say it was an almost 2 year old, not newborn...I dont know WHAT shots were given but my oldest, my 6 year old said 'oh mom ,I hope those shots dont make that baby's brain crazy"...
AT least our family doc no longer gives the HEp B shot at birth, she waits until at least 6 months, at least the clinic (a BIG clinic system with 2 large hospitals and numerous clinics) have now changed to NOT accept ANY gifts/lunches/paper/etc from any PHARMA rep...they still take the pens thought >>>>but its a start!

I think we are getting heard, one by one...and unfortuneatly, its now 1 in 100 kids (I believe its still much higher than that)..but just by stats alone...the more people affected the more people will 'care'...and that is about any political subject you can think of...because especially when money is involved (all of politics really) if the PERSON is not PERSONALLY affected, they dont care...
Unfortuneatly, by the Government's own fault, there will be more and more kids and families deeply affected by Autism, and then it will become a 'major issue'...at least ,I pray it happens before that...but history suggests it will take that to happen...

I think we have the Internet to thank so that we can even INVESTIGATE our 'issues' and important sites like this where EDUCATED and DETERMINED parents/families/professionals can all come together and share...if I had not found Age of Autism, I do not know where I would be right now, or how much sicker our kids would be. I know for a fact we would have 3 kids with Autism, not 2 because our daughter surely would have followed in her brothers footsteps had we continued with her vax's, because she had the same 'health issues' as her bro's did ,ear infections/continuous colds/etc..until we stopped her vax and started bio med living..

I have gone off topic a bit...sorry, I rarely have time to post (ha, you all can feel my pain) and my hubby has the kids in the other room all involved in something so they are actually 'allowing' me to finally post...lol!)

I fear, at least in my family (the unfortuneate, UNSUPPORTIVE and naive and "oh, I asked my doc and they said that the shots are needed now and all together, I mean she knows whats going on" type of family who cant seem to understand when/if we come to a family event with our 'own' kind of 'funny food' or cant come to an event for reason of a 'bad day' kind of family so many of us happen to have)...they are the kind that are starting to say "well , Autism is the 'diagnosis' of the day like ADD/ADHD was a few years back..these kids just need better parenting/a spanking/more discipline...that its WAY over diagnosed and that ANYONE could 'qualify' for Autism if we really 'looked at it'...or think 'HA, there goes ANOTHER kid with Autism'..."what a joke" type of thinking...

I believe that is the new mainstream ploy to try to get away from the possibilities of toxins/viruses running around creating this whole mess...

I mean, WHAT WILL IT TAKE?

I dont know the exact answer..but I DO know that we all have been put togehter here at AoA for a reason and I BELIEVE we WILL be heard soon!!! Otherwise, WHO will be able to be our workforce in 10-20 years? Surely, being 'non-verbal' will be 'normal' and the diaper makers will just continue to make bigger and bigger sizes to accomidate (I just realized how big they make kids diapers IN THE STORE these days, even when my oldest, now 6 yrs old, was born, the larger sizes had to be specially ordered ...as well as I couldnt find any preemie 'anything' when he was 6 weeks early in the store...now I see tons of 'preemie' things and super huge diapers..I think the biggest diaper available when he was born was a size 4, and slowly added was a size 5...now ...well, you all know..)...anyway...my point....
long story short...
THANKS to Kent and EVERYONE here at AoA! You HAVE made the world a better place, and I know we will continue to do it together!

Sorry for the totally lack of clear-one subject message here..LOL!

Angie
Mom to Ethan, Alex, and Megan

[Kathy Blanco]

I agree with Veronica, we are a throw away my society, and our kids are one of them. It starts with the idea that human beings are not viable in utero, and are finished by our kids being acceptible losses. It's ok if my child doesn't get autism by vaccination, but it's perfectly ok yours does. It's ok to use aborted fetal tissue in vaccines, they were just going to be thrown away anyways? Truly sick. And then it's ok to put in our babies tummies, MSG and GMO foods..the fluoride will dumb down your child, but who cares right? As long as it doesn't affect me....

[Sarah]

I was watching the tribute to Mary Travers on the news last night and started thinking about what a different place our country was in back in the 60's... back then people cared about children overseas they didn't even know. That generation had such passion and made a huge impact. If we could just bring back that spirit.

Today people act like it's politically incorrect to mention vaccines and autism in the same sentence which just makes me want to scream "What more proof do you want than the number of ASD kids!" and "Wake the F up!"

When I see the flag waving on peoples lawns, and I mean no offense to anyone, I feel nothing. I feel alienated from a gov't whose behavior lately actually scares me. Homeland Security feels more like big brother..it makes me paranoid and distrustful. We live in such strange times.

[Benedetta Stilwell]

Richard Clark III???? What do you all think? Is he one of ours????
Poor man if he is, Poor society if he is. Things have a way of coming around and making political parties interested in things when society finally gets affected.
But you are very right Kent!

[Leslie Phillips]

All I can say is Amen. Thanks, Kent.

[Becky]

I agree 100% with you, Kent. It used to make me angry. Now reading your post, I realize it makes me sad. If no one is listening and no one cares, how do you make them?

Before we had children, my husband and I used to argue about politics, as we held completely different views on most of the issues. I actually used to enjoy the spirited debates we would have.

But now, the issues for us aren't what they were before, and we agree more than we disagree, because we look at each issue as "How will this affect our children?" And not just our own children, but my brother's children, our neighbor's children, your children, the children of people I have never met.

I have heard my husband tell people, who are surprised by his change in ideology, "I'm not a Republican. I'm not a Democrat. I'm an ASD parent."

[Bob Moffitt]

It is not only "Autism Parents" who have been politically alienated over the years.

Far more important has been the "political allienation" of our public health bureaucracies...by those appointed by presidential administrations...of BOTH political parties...who were confirmed by Senate majorities...of BOTH political parties.

Since 1953, of 21 appointees to lead our nation's highest Health agencies..beginning as Sec of Health, Welfare and Education to today's Sec of Health and Human Services...exactly ONE was a physician who had medical training.

Of the 20 other appointees...1 was a historian..1 a social scientist...1 a businessman...3 were lawyers...and...13 were appointed after serving in political office.

Apparently, BOTH political parties appoint a Sec of HHS based upon their political affiliations...not their scientific credentials to lead the agency.

Therefore, given the choice to choose between what is best for the political party that nominated and appointed the Sec of HHS...and...what is best for the "public health" of our nation.....the Secretary of HHS would likely opt for protecting their political party first.

The absolutely last thing we need in this country is to have a "political hack" serving as Sec of HHS...responsible for overseeing and regulating the same corporations that contribute so much MONEY ...to the party of his/her affiliation.

[ct teacher]

I don't believe that this problem will be solved in the political arena. It has to be solved by the people who are suffering, who will have to get louder and stronger. The problem is that vaccination is a cornerstone of the modern medical establishment and people have been brainwashed into thinking that vaccines are good for us and save lives. Changing all of that is a huge task....because the medical establishnent and Big Pharma will fight tooth and nail to prevent exposure and they have the resources to do it. Changing the public mindset? An almost insurmountable task! However there is hope. Maybe we need to find a way to fund the study of vaxed vs unvaxed kids, because the govt agencies will never do it. It's the only way to change the public mindset. We need to stop arguing with these people about the inadequacies of the studies that have already been done. They have dug in their heels to protect their backs here and we will not be able to shout them down. However , if we could find a way to have the aforementioned study done in a scientifically legitimate way we could break thruogh the smokescreen of lies that surround this issue. The HRT studies of postmenopausal women comes to mind. Doctors pushed women to take hormone replacement for decades, insisting that it would protect them from cancer and heart disease. When the studies were finally done, however it showed just the opposite. It increased the risk of these diseases many times over. So, after thousands upon thousands of women either died or were maimed and damaged, the medical establishment has backed away from this treatment. Vaccination is next on the horizon and then cancer treatment, until modern medicine is no longer relevant. Major changes will ensue. So let's not give up or give in, let's give 'em hell! Let's find a way to have the study done!

[walter Constantine]

I post on the Buffalo forum of Topix,
Anytime I see an article on here or another site I believe other people should read I post some of the major points of the article and ask people to come here and read it for themselfs.
I think just maybe if enough people start reading these articles we can do something.

Thank you,
Walter C

[Renee]

Thank you for putting into words what I have been feeling for a long time. I have family members of both parties who keep urging me to get involved politically. I have never been able to explain how abandoned I have felt by the whole system. Your eloquent words ring so true.

[Veronica Rawnsley]

I believe people are so indifferent and apathetic to our children and our suffering because we are a nation jaded by the law of abortion. It is a great paradox that we call abortion "health care." Health care for who? I believe this is the primary issue never talked about but has disassembled and hijacked many of the intentions set forth by our government in the name of public health. It was after my son’s death from his vaccines that I understood there lies a connection between the destruction of our son’s life and the countless babies destroyed by abortion. If our nation continues to kill the most vulnerable and call it “choice” we will more and more easily accept the destruction of a few lives and be comforted that it is in the name of public health.

[julie]

I identify with Ken 100 per cent. Call me when you're going to pay for HBOT and chelation. Otherwise, I have no interest. This health care circus is like watching a pack of loonies fighting over something that's going to kill them anyway. Americans are addicted to surgery and medication.

[Angela]

Republicans love Big Business; Dems love the fantasy of "Public Health" (although dems apparently froth over Big Pharma money too).

No matter who wins, our children lose.

[david burd]

Kent, I am wholly in your corner of the ring, yet I think both character and politics are inextricably combined, such as most parents, school boards, local politicians all think they know what is best for everybody, and thus mandate the horrendous vaccination schedule necessary to attend public school.

As to Presidents, former and past, they are unwittingly kept in the dark by their medical advisors who are all products (or believers) of Agencies like CDC and NIH/NIAID. I'm afraid to say none of Obama's present staff or Obama himself has ever heard of Age of Autism, or taken a few quality minutes to bring it up on their personal pcs.

In the character-sense, these Health Chiefs seem to relish their individual power in controlling and herding the public, and in a political sense they constantly reestablish their Agencies'"importance" in the public health arena - even though they are arguably the creators of disaster (but won't reevaluate). Being the cause of the national autism disaster (and individual grief beyond measure) is something human nature truly does sublimate, so in that sense, yes, it is character!

The present orchestrated cry by CDC leaders for massive H1N1 vaccinations, despite this flu's demonstrated lack of genuine serious illness echoes virtually all the vaccines on the U.S. Child Vaccination Schedule, and Obama several times has explicitly backed up CDC on this, of course relying on his advisors.

[Tanners Dad]

The halls echo in the clanging of silence from emails, hunger strikes, rallys, celebrity screams, request for meetings and more. I feel the same way. But I will not stop until every person dealing with Autism can communicate... "I love you Mama"

Join me on my Birthday asking for meeting Oct. 2nd Blog tweet & Call http://bit.ly/3tnFHa and http://tinyurl.com/m9r8ws Thanks

[deb in il]

Religions have failed us. Politicians have failed us. The Health Industry has failed us (except for the rogue health care providers willing to step away from their master to see the truth).

We'll keep yelling and getting it out by word-of-mouth. We'll keep telling our friends and nieces and coworkers to think twice about the Hep B, maybe delay getting vaccinations until they're baby is bigger, don't do it if they have a cold, don't play catch up, and maybe some will just not get them at all.

We shall overcome.

[Theresa]

Oh, Kent, I wish I could disagree with you, but I can't. Getting elected to any political office seems to require so much money that no one from either party is immune (ugh) to lobbyists and other large campaign contributors. No one in high office, it seems, can afford to have character or principles, so we end up with two parties that look remarkably similar when it comes to what they actually *do* when in office (the current healthcare debate notwithstanding).

Then we have this little factor: it's a popularity contest. The guy who wins is the most popular guy, which means that he appeals to the middle the best. Some of the characteristics that go along with that are factors like height. Although the taller candidate of the two parties wins just over half of the time (http://en.wikipedia.org/wiki/Heights_of_United_States_Presidents_and_presidential_candidates), the fact remains that presidents in general are in the tail of height for American men: only 15 percent of American men are over 6 feet tall, but 42 percent of American presidents have been (http://www.laborlawyers.com/showarticle.aspx?Ref=list&Type=1119&Cat=3387&Show=9642&PrintPage=True).

What does this show? That if the vast middle of the country, which appears to pick its leaders based at least in part on physical characteristics, doesn't care about your cause, the political power structure won't care... which makes it all the more important to win the hearts and minds of the vast middle to the cause of autism prevention and treatment. This is why AoA, Jenny McCarthy, and you, Kent, are so important. Every average guy out there who reads your articles is one more guy who might influence our political leadership, no matter which party ends up in office.

[Nicole]

People in politics are so concerned with special interest groups, getting re-elected, and poll numbers, that people like us become unimportant in the mix. I believe that whatever happens with healthcare; whether it goes public, stays private, or there is a combo of both, they will continue to ignore the autism community. Mostly I worry what it will do do keep the numbers from rising because the government has their own agenda regarding vaccines. I fear forced vaccination in most states will not be out of the realm.

[Theresa Cedillo]

"I believe in all of you more than I believe in any political party."

And we believe in you Kent!

Hope to be at that big party crash too.