Autism Becomes a Political Football
By Kent Heckenlively, Esq.
For many long years I've felt that those of us in the autism community resemble the African-Americans in the 1930s and 1940s who would go to movies filled with white faces and yearn for the moment when one of their own would appear on the screen for even just a fleeting moment. By and large these actors would do nothing more than utter a sarcastic quip or provide some important piece of information, or simply take somebody's coat. It would matter because for a brief moment the members of that community would feel they too were part of the American nation.
I couldn't help but feel a bit of solidarity with those audiences as I sat on the sidelines and heard President Obama says this on April 13, 2011 in regards to the Ryan plan.
It's a vision that says up to 50 million Americans have to lose their health insurance in order for us to reduce the deficit. Who are these 50 million Americans? Many are somebody's grandparents, maybe one of yours, who wouldn't be able to afford nursing home care without Medicaid. Many are poor children. Some are middle-class families who have children with autism or Down's syndrome. Some are kids with disabilities . . . so severe they require 24-hour care. These are the Americans we'd be telling to fend for themselves.
And yet it all sounds so hollow.
Does anybody believe this means President Obama is going to do a single helpful thing for this disease which is striking more than 1 in 100 children and is now twenty times more prevalent than polio ever was in the population?
Now I'm not writing this to tell you who to vote for, but to simply point out how useless politicians seem to be about anything in regards to autism. Remember that kid with autism who scored so many basketball shots in a row and President Bush stopped by to see him? Nice gesture, but who the hell cares?
Maybe I'm just a little punchy because in the past month I've spent two nights in the hospital with my daughter who was having breakthrough seizures, then she got a yeast flare which caused her to be up for several nights in a row walking around the house, or that the new seizure medication seems to be giving her incredible rages.
What does it really cost to make a difference in autism? If the government spent ten million dollars they could answer the question of whether vaccinated kids have a higher rate of autism than unvaccinated kids. Is there some issue more pressing than discovering if we're destroying a generation of children?
Let's think of all the associated problems with autism. There's immune disregulation, increased oxidative stress, increased expression of pro-inflammatory cytokines and chemokines, mitochondrial dysfunction, retained heavy metals, gastro-intestinal issues, increased gut-blood-brain barrier permeability, and chronic active microbial infections suggesting an underlying immune deficiency.
What would all that research cost? Maybe fifty million? Supposedly a child with autism will eventually cost society about three million dollars. That's just a little more than the expected lifetime cost of seventeen of our children. And there are close to a million of them. Let's figure out how to cure our kids rather than paying for a lifetime of care. How's that for a sound fiscal plan?
All of these issues cry out for scientific investigation and yet nobody provides any funds for this research. Instead we get Presidents who stop by to say "Nice shot!" or use us as tools to bludgeon the opposition.
Personally, I'd love it if any politician really took an interest in autism. If I disagreed with every one of their positions, but they did the right thing regarding autism, they'd have my vote. I'm sorry, it's just that important to me.
But if you're just going to use our kids as photo-ops or talking points in some partisan fight all I can say is "Get your damned hands off them!"
Kent Heckenlively is Contributing Editor to Age of Autism
Medical science is interested in suppressing and altering symptoms. They are not interested in telling you NOT to buy their products, i.e. vaccines.
Any honest study of the huge epidemic of autism and the lack of health management for these people, would conclude that for THEM, the vaccine was not a good idea. This does not fit with the model that everyone should be vaccinated for the benefit of society.
I would support private funding to study unvaccinated people. You could chart their illnesses, including those we vaccinate against. You could see how many had autism, ADD, diabetes, etc. You could create a group of people that others would want to emulate. You could showcase a group of people that stand out, not because of something they DID, but because of something they did NOT do: vaccinate.
Posted by: Cynthia Cournoyer | April 28, 2011 at 07:31 PM
I have been in the political arena fighting the good fight for ten years now. I can personally tell you, THEY DON'T CARE!! The only time they look like they do is when election time rolls around. Autism is a hot topic and they can't afford to look bad on it. But in the whole, they don't give a damn. It is focus group after focus group, committee after committee, outlining the same problems everyone other group has, for the last decade, WITHOUT DOING ANYTHING TO SOLVE SAID PROBLEMS!!!
The last few weeks have been hard on me. I have been really sick, and have lost drastic ammounts of weight, for no apparent reason according to the doctors. Sounds familiar doesn't it? I have my cell phone right next to me turned all the way up in case I get that phone call that tells me the Aspie man that I love has gone back into his grand maul seizures. So I am angry, I'm pissed off, and at my wits end. It appears if we want ANYTHING done, we either have to stuff these issues down the politicans throats till they get it, or start working on getting the funds together to fund what is needed ourselves.
Sorry for the rant! It's been hard.
Posted by: Theodora Trudorn | April 28, 2011 at 10:13 AM
Sorry, perhaps you can clarify this for me leaving in the UK- I was not aware than any administration ever did anything useful for autism?
Trump presents with the most appalling range of political arguments and I would not trust the guy to do anything supportive towards any minorities and disability. His actions in the UK have seriously compromised a range of valid environmental issues, opposing the opinion of communities. All for the sake of greed and money making. Sorry, not a guy who cares.
Posted by: Lorene Amet | April 27, 2011 at 03:53 PM
To Teresa O - I am intrigued by your phrase about screenings for autism being covered by insurance. Am I wrong or is this another import from Denmark- Offer something for autistic kids and then when more of them come out of the woodwork, say "Hey, look! The rate of autism is still rising even after we took out the mercury !"
Nevertheless, I would be happy to see early diagnosis for autism if it means the doctor would then say "Your child has some very early indications of autistic symptoms- Now just stop the vaccines and stop the fish and move away from that power plant and you will probably see your child improve. Wow ! What a concept ! Prevention of Autism !
It isnt really so difficult after all !
Hey, I must be dreaming here. Wake up and get back to reality with a public health visit . Take home five free pamphlets that tell you to get good health by washing your hands from morn to night.
Posted by: Cherry Sperlin Misra | April 27, 2011 at 12:56 PM
Perhaps, Ron Paul would hold health authorities to some degree of accountability, or at least appoint some who would act with sanity?
http://www.youtube.com/watch?v=f74xvtRijMc
Posted by: JenB | April 26, 2011 at 11:59 PM
I agree that Obama administration has been worse than useless to us. But I fear that an endorsement coming from Donald Trump may do us more harm than good. He's right about autism, but on every other issue he's an ignorant buffoon. If he makes an issue of vaccines, the media will seize upon it as further evidence that only kooks are concerned with vaccine safety.
Posted by: Jonathan Rose | April 26, 2011 at 10:53 PM
Wow, the Sebelius thing really blew me away. She really does make something out of nothing.
Let's see: "Now, new insurance plans are required to cover autism screening and developmental assessments for children at no cost to parents. Insurers will also no longer be allowed to deny children coverage for a pre-existing condition such as ASD or to set arbitrary lifetime or annual limits on benefits."
So, screenings for autism are covered by insurance. Does this mean that everyone gets to see a pediatric neurologist, or just that pediatricians have to do insurance-covered autism screenings? I'll bet a million dollars that GI workups are not *guaranteed* to be covered by insurance!
...and insurance companies can't deny coverage to people whose autism is a pre-existing condition--but what treatments do they actually cover? Again, I'm willing to bet that the actual insurance-covered services are not much different from what was covered before...
Until we have a president who has a child with autism (as imagined in Kim's amazing piece about Inauguration Day), autism will mean as much to the president (no matter the political party) as any other problem that befalls someone else. In other words, hardly anything.
Posted by: Theresa O | April 26, 2011 at 09:39 PM
Thinking along the lines that autism should be our sole issue...
Donald Trump is not beholden to pharma. He's got his own money and doesn't need theirs. He just beat Obama and all GOP candidates in a recent poll. http://www.newsmax.com/Headline/donald-trump-newsmax-poll/2011/04/26/id/394189?s=al&promo_code=C29D-1
Here's what he said about the vaccine/autism controversy in an interview:
At a news conference Thursday in a gold-trimmed Mar-A-Lago ballroom, Trump’s wife, Melania, noted her 22-month-old son, Baron, and said: “I cannot imagine what the mothers [with autistic children] and mothers all around the world go through. … Let’s get rid of autism.”
In an interview, Donald Trump said he thinks the rising prevalence of autism is related to vaccinations of babies and toddlers.
One in 150 children is now diagnosed with autism, with the prevalence higher among boys.
“When I was growing up, autism wasn’t really a factor,” he said. “And now all of a sudden, it’s an epidemic. Everybody has their theory, and my theory is the shots. They’re getting these massive injections at one time. I think it’s the vaccinations.”
Even though I do not agree with Trump on every issue, I think he is our best shot at ending the rising tide of developmental disorders.
If he takes on big pharma, then I can live with his comb-over.
Posted by: No More Opharma | April 26, 2011 at 08:47 PM
I like your final comment regarding autism being our sole issue. I think with a million kids effected, multiplied by the amount of parents and grandparents, we have a significant voting block. In fact I calculate it at about 10% of the total from the last Presidential election. 10%, that decides most elections at all levels. The autism community needs to unite around its sole issue and vote as a block. The first Governor or Senator we knock out will finally get us the attention deserved.
Posted by: Ken Siri | April 26, 2011 at 08:20 PM
Rob Smith, Kristine
I think what the President may have been referring to is the Medicaid waivers (MR, DD, EDCD). He is probably trying to imply that if there are cuts to Medicaid, that it will have an extremely detrimental effect on most (if not all) families with children who have autism. Schools can also get reimbursed to a certain extent from Medicaid for services that they provide to special ed students (speech and OT).
Unfortunately for his argument, the Medicaid waivers tend to have very long waiting lists (from what I have heard, YEARS long) - therefore, many families with autistic children are not benefitting from this program. In addition, some families may not apply to begin with for various reasons. I know some families benefit from the waiver(s), but like you, I suspect that it is not a major help - except possibly in some isolated instances.
The President is just using autism to further his own agenda. He did this during the Presidential campaign as well; the one time he mentioned autism on national television (that I am aware of) was to use it as a weapon against his opponent. His proclamation (Autism awareness) reads like very poor quality modification of a template. I do not believe that he knows very much about autism, nor that he cares to know.
Posted by: Carolyn M | April 26, 2011 at 05:04 PM
No More Opharma
Now look here -President Obama has helped "A" person with autism.
He put Ari Ne'eman on the National Disability Council, that's enough don't you think?
Anne Dachel
you brought up the fact that Sebelius brought up better insurance coverage---- did I miss anything important???
Michael on the IACC brought it up briefly and I didn't see anything that would help there either?
Just trying to make sure I ain't missed nothing.
Posted by: Benedetta | April 26, 2011 at 03:54 PM
The Democrats had the Senate,House and Presidency and screwed the autism families in the VICP. When I hear Barak Husein Obama attempting to use the autism cause to get reelected it makes my blood boil.
Posted by: Rich | April 26, 2011 at 03:01 PM
How to play autism football:
1. Let wealthy owners call the plays.
2. Pump fake often.
3. Punt frequently.
4. Never pass the ball to someone who can score.
5. Intentional grounding with loss of yardage.
6. Illegal shifting.
7. Holding.
8. Clipping.
9. Unnecessary roughness.
10. Accuse other team of moving goalposts.
10. Refuse access to media who interview opponents.
11. Lots of pep rallies and parades.
12. Promise next season will be a winning one.
13. Repeat, taking a knee as necessary to avoid getting sacked by the truth.
Posted by: Garbo | April 26, 2011 at 01:09 PM
Exactly what Rob Smith said. We are already fending for ourselves.
I don't appreciate being used as a political pawn and both sides are guilty of their inaction and stupid stupid words. The statement from secy HHS made me want to jump out the window.
Posted by: Kristine | April 26, 2011 at 01:08 PM
Kent, first of all, I'm so sorry to hear about what's been happening to your daughter. I hope are getting better for her.
Second, I completely agree with you about the lip service autism receives from government officials. Their aim is to sound concerned but not alarmed, to recognize the disorder but not to commit to anything specific.
I have to congratulate HHS Secretary, Kathleen Sebelius, for her official April 25, 2011 announcement about autism published on classy White House stationary entitled, Meeting the Needs of People with Autism.
http://www.whitehouse.gov/blog/2011/04/25/meeting-needs-people-autism
You'd never think autism was an epidemic affecting one percent of children from the tone of this piece. In fact, Sebelius never mentioned the rate or the fact that autism predominantly affects children. She noted that there is no cure, but she failed to tell us that officials don't know the cause either, so there's no way to prevent your next child from also ending up on the spectrum. And she left out anything about the exponential increase. It was a nice, feel-good, see-we-care-about-autism announcement from someone who doesn’t really do anything to stop this nightmare.
Sebelius made two vague statements about helping people with autism reaching their full potential, one at the beginning and one at the end:
"Helping every American with autism achieve their full potential is one of this administration's top priorities" and "Together, we can help reduce disparities and allow everyone to actualize their greatest potential."
How that will happen is of course, never talked about.
Sebelius brought up better insurance coverage, as if that does anything to address this disaster. She also told us that "there is more support for Americans with autism than ever before" and made the totally unsubstantiated claim that there is "more promise of new breakthroughs."
Seriously? Give me example of anything the government has done so far that has put us any closer to stopping the epidemic. Sebelius came up with 5 paragraphs that said nothing. There was no mention of the approaching tsunami of dependent adults with autism about to bankrupt this nation, nor was there any use of terms like, "crisis," "epidemic," or "emergency."
Good job, Sec. Sebelius! When you're out of office and adults with autism are literally out in the streets with nowhere to go, no one will be able to say that you weren't concerned when you were HHS Sec. Of course, no one will be able to say you did anything either.
Anne Dachel
Media
Posted by: Anne McElroy Dachel | April 26, 2011 at 12:51 PM
Kent, your Obama quote is typical of how this president gives Americans the false impression that good things are happening or will happen for people with autism, under his administration.
Here's another example, from his recent proclamation on Autism Awareness Day.
"With each breakthrough in research and each innovative treatment, we open endless possibilities for the many American families who have been touched by autism."
Innovative treatments? Endless possibilities? Where?
This is the president who put Ari Ne'eman on the National Disability Council and made autism-debate-censor Kathleen Sebelius our HHS Secretary.
He is actively, not passively, but actively prolonging the harm caused by the one-size-fits-all vaccine schedule, and he uses our children's condition to promote himself without coming through for them. Money that could be spent on "innovative treatments" is instead spent on more useless genetic studies.
Posted by: No More Opharma | April 26, 2011 at 12:03 PM
Sadly with Autism you can locate the cause of the problem by observing the research that the "CDC refuses to do" / such as a simple vax/ unvax study. They already know what the damn answer is from their own vaccine data, which they have now lost / given away or refuse to let someone analyze.
They have no interest in trying to find out why Somalia children in Minnesota have "world record Autism and ADHD rates. They seal all the vaccine data from the Hanna Poling case so it will never be seen by the public. They refuse to explain their conduct at Simpsonwood.
They cannot even seem to even get a grip on Autism rates in other countries who provide only 10 or 12 shots by age five. They create "committees to study" the "vaccine study ideas" of other "committees."
If each member of Congress was given a web site, a van and a million dollars to run for office, and that's ALL, many problems might have a chance of being solved.
In 2008, about 6 trillion dollars vanished in the US, basically from the conduct of about 10 or 12 people who were able to change a few finance laws from about 100 years ago...
The Autism epidemic will cost nearly the same, if anything is left except investors who want the nation to borrow money so they can sell insurance & hedge funds to each other. Our only profitable world export may be "liability free vaccines" if they can continue that endless scam...
They are of course, still in control.
Posted by: cmo | April 26, 2011 at 11:07 AM
Kent, The most recent Presidents have all been kept uninformed, if not actually misled, by our Pharma-allied U.S. Health Leaders on medical issues such as vaccination-dangers and the extensive list of medically-injured infants and children.
Thus, we (the public) get to hear our great (actually, terrible) is our health system that can provide (toxic) treatment drugs to help kids - while prevention is ignored.
Ironically, one of Obama's daughters is so allergic to dog hair the First Family could only get a special breed of puppy; it's a good bet her allergy was caused by vaccination(s).
I cannot recall a single example of kids growing up way back in the 1950's and being allergic to animal hair. Not to mention being allergic to peanuts and all the other foods now deemed life-threatening.
Posted by: david burd | April 26, 2011 at 10:32 AM
The only way to know the things that are spoken by govenment leaders are true is to know what is going on for yourself and those around you.
Since Jan 20th of this year my husband's health insurance ran out since he had to go on disablity.
I can't buy any private health insurance for my son.
He is still 24 years old, but I have been waiting for a month now for an answer from a health insurance company. There has been absolute silence one way or the other!
My son's seizures are very well controlled, he has not had one for five years, even absentees which I worry about more, no myclonic jerks even. I am so very lucky and Kent I am so sorry about the health problems your duaghter is experiencing right now. It is frustrating that there is nothing I can do for you (if you think of anything let me know though) meanwhile - I will offer my prayers.
Posted by: Benedetta | April 26, 2011 at 08:35 AM
The President's comment struck me as strange too. Aren't most autism parents largely fending for themselves now? I guess there's some indirect federal money through the school system for these kids, but it's not very much, and it certainly doesn't put kids on the path to recovery. Let's say the "Ryan budget" became law and autism parents and kids were left "to fend for themselves", how would that be any different than the current status quo?
Posted by: Rob Smith | April 26, 2011 at 07:25 AM