Obama and Autism: All the Presidents’ Men
By Cathy Jameson
1,856 days
That’s how long our current president has been in office. A lot has happened in that time. Some people like the changes that have come under this administration while others do not. I guess taking the good with the bad is part of politics. But I’m getting tired of the bad. Something that I don’t like, is that in the last 1,856 days, autism hasn’t decreased. In fact, since inauguration day 2009, the autism rate has jumped from 1 in 166 to 1 in 50.
What does that mean? It means more families are affected by autism today than ever before. It means that more children are facing a life-long disorder that negatively impacts their future. Every day is a day to overcome or to learn to live without. Every day our children fight to overcome struggles while living without necessary skills that can make those struggles go away.
Autism. I naïvely thought I may get a break from it. I thought I might get some down time with the holiday on Monday. But on Monday, when others took time to celebrate, we simply carried on where we left off Sunday night. Presidents’ Day was a regular day. Ronan had school. He later had therapy. As the day continued, we stuck to his routine. As much as we’d like a day off from autism, I appreciate his routine. Ronan does too. The routine, as well as other strategies we’ve put in place, secure Ronan’s safety. They also keep our lives and his health needs balanced. It takes a great amount of work, but when I focus my energy on those strategies for Ronan, things do get done.
I haven’t yet figured out a personal strategy to reach those in Washington, D.C. I’d love to sit down with someone who has the authority to finally do something pro-active about the rising rate of autism. I’d love to share our story with them and have them witness what a regular day looks like for Ronan—it would include an ugly side of autism, the side that national television commercials dare not broadcast. What he lives, and what we must balance for him, is no picnic. It takes no days off, and it often leaves us working both day and night.
So, when today was scheduled as a day to honor the chief executives who’ve served our nation, I found it hard to muster energy to honor those in power who’ve look the other way. When clearly our children need our nation’s leaders the most, it’s hard to appreciate their position when little has been done to address autism. It’s also hard to be hopeful when nothing’s been done to truly combat it either.
Imagine the legacy our government officials could leave if autism become a priority. The future wouldn’t look as bleak and dreary as it does now if that were the case. But for some, it is bleak. And it most certainly is dreary.
When the autism that Ronan and scores of others face is finally recognized as the debilitating disorder that it is, and when those in executive positions finally look our community in the eye intending to help us, I promise you that I will take time to celebrate.
Our current chief has 701 days left in his term until the next president is sworn in. It isn’t a lot of time, but surely by then something will have been done about reducing the autism rates and about extinguishing the epidemic it is now. Change is possible, right?
Cathy Jameson is a Contributing Editor for Age of Autism.
according to a classic autistic person i know, "onli tru voice fr autism is us tht liv wt it"
Posted by: Nate Watkins | February 25, 2014 at 10:48 AM
I have to view the autism epidemic as a complex and serious subgroup of a much broader spectrum of disrupted immune system disorders (DISD spectrum?--I hope that's not making too light, but I really struggle with how to simply connect and convey how connected all this likely is). There are so many "diverse" diagnoses, DISDs, in my family involving known or suspected immune dysfunction, suspected now by me to be foremost pollution induced disorders (now I'm going to have to drop the acronym thing), that I struggle not to live clouded by a view that we are very likely (consciously or unconsciously) diminishing the diversity of the human race--and much productivity as well--through the diminishing of life quality and expectancy in those I love most and in all with similar susceptibilities (or perhaps similar exposure histories). We do our best to make lemonade out of lemons, at least most of my family does--it was the ultimate toll when my daughter got too much and I've been finding myself unable to pretend that it's lemonade (mercury-laced koolaid) we're often drinking (how to urge people to just dump it while not sounding crazy about how crazy our "healthcare" and such has become???).
IMO the potential for major overall health advancement is part of what is being denied a significant number U.S. (and world) citizens by the deny, delay, and divide tactics of those we expect to help. Can we get more individuals, not just those who are touched by autism (though I think most actually in a way are), to agree to look for cause(s) of these various disorders in our current experimental practices (vaccination among the foremost) and to come to see that the established "health" agencies are not fulfilling this function? Can we get more to see that they are likely dealing with related concerns? Even when we find WE are the cause, or perhaps especially when we can find that is the case, then I think we could find prevention of health-harm much easier and simultaneously reversal much more possible and less costly than we currently tend to imagine.
Posted by: Jeannette Bishop | February 22, 2014 at 02:25 AM
Donna,
In theory you are right, but I doubt that the criminals who are killing and maiming children by millions with vaccines for profits will stop doing this in face of avalanche of young people lining up for welfare. It looks they are getting ready now to euthanize the sick children.
Only a revolution and dismantling this corrupt fascist system will do. And most important all drug companies must be nationalized and turned to public control, then they will produce meds which ill people need and not poisons to kill and cripple the healthy.
http://www.latimes.com/opinion/commentary/la-oe-0220-daum-belgium-euthanasia-children-20140220,0,6107150.column#axzz2tsQk1POA
Posted by: no-vac | February 21, 2014 at 06:46 PM
Change is only possible when a more powerful influence supercedes the currently controlling influence(s). We are up against the influence of 1) pharma paying to maintain and increase profits and 2) government servants (oxymoron) propagandizing to maintain power and 3) medical profession complicity to maintain reputations and income.
One of the most important initiatives we must support is getting the influence of money out of our elections. Work to get Citizens United overturned as well as enact a uniform campaign finance reform that addresses finance inequality by implementing public financing for elections - local, state, and federal.
At the very least, we need to go back to the days when direct-to-consumer advertising for drugs was not allowed thereby removing the $carrot$ on the stick that guides editorial control and make honest reporters out of our news journalists again.
Scientific corruption is a given these days. I don't know anybody who isn't skeptical about much of what passes as science these days. Just today I checked out twitter conversation at GingerTaylor and found an example of a pediatrician named Dr Nathan Boonstra explaining how fever and rash following MMR will result in a regression by chance. How inane. Just another small example of how doctors are losing not only the trust of the people and but their reputations as well. Gone are the days when people believed whatever their doctor said.
For a long time, I thought this was about fighting a battle between right and wrong for the truth. We're still fighting for the truth and that truth being that more children are suffering today from chronic disease and disability due to an increasingly toxic environmental exposure that includes vaccines than suffered chronic disease and disability from infectious disease and toxins in the past century. People have been influenced by the propaganda that vaccines have saved them from infectious disease and disability. When vaccines were few and far between the risk/benefit ratio appeared believable. But pharma got greedy and knew that people were willing to believe in anything that held the promise of a life free from pain and suffering. Well, now people are experiencing vaccine damage to such an extent that they are starting to see the forest for the trees. And they are scared. Like Offit likes to point out, you can't unscare people.
Still, I've come to conclude that if somehow unable to change the nature of the influences that currently control the dialogue on this issue, I still anticipate that in the near future when the children born in the late 1990's starts lining up at the social security offices across the nation, the magnitude of the effort and expense of caring for such a large disabled population will instigate action and force change.
Posted by: Donna K | February 21, 2014 at 04:20 PM
I think a lot of the issue is many people with high functioning autism have no idea that there is another type of autism out there. They assume every one with autism is like them , is verbal or at least can communicate fluently, and has some "special talent" or savant ability.
The reality is Alissa that people with autism and special talents are in the minority.
You can google the percentage of people with autism and savant abilities. A quick check shows about 10% of people with autism have savant abilities, 1% of people without autism also have savant abilities. And for some of those people with savant abilities how it manifests might include things like being able to memorize train timetables; a fun party trick, no doubt.
However, 90% of people with autism DO NOT have any special talent. For these brave people their life is about struggling to learn, and maybe never learning the things that you take for granted. Like being able to speak. Or being able to type a sentence. Being able to take a shower independently. Learning to use the bathroom ( many teenagers with autism are still in diapers.)They are not out there solving the theory of relativity. They are trying to learn how to say "I want to eat soup"
And guess what. Just because they aren't "special" they are still deeply valued and loved by their families.
please just try and meet someone with low functioning autism. Someone who can't speak or type.
I really believe the problem is not lack of empathy, but a lack of awareness.I think many people with high functioning autism go on neurodiverse website where people spend a lot of time telling each other how brilliant they are,and they really don't realize that for many people with low functioning autism life is so very different.
(Many people with autism also have a profound or mild intellectual disability. You can google the percentages.)
Alissa, just like Cia Parker ( who has mentioned she has an autism spectrum diagnosis) you could also be an exceptional advocate for non verbal people with autism; but you will need to learn a little about their lives and needs first.
Posted by: Hera | February 21, 2014 at 12:11 PM
How do you know that they are high functioning? Or lack empathy? Your own ignorance is frustrating. Do you not know anything about autism beyond what you experience as a spectator? Whose ego and lack of empathy are you really shining a light on with statements like those?
Posted by: Alyson | February 21, 2014 at 11:31 AM
Diane,
Just to let her know that her smug egoism is not welcome here.
Posted by: cia parker | February 20, 2014 at 07:51 PM
Mary W Maxwell, thank you for pointing out your review of Ido Kedar’s book. I heard Portia Iversen talk about her son at the IACC meeting last July, and I read her book. The rapid prompting method (RPM) appears to be a workaround for people with a specific incapacity to produce speech, something like Broca’s aphasia. RPM should be investigated as a means to enable people with this distinctive impairment to engage in communication, and even more important to maximize their education.
The language disorder for most people with autism is different. My son had the kind of language difficulty that Kanner described. He began speaking with phrase fragments, which he applied badly out of context. He had what Isabelle Rapin refers to as verbal auditory agnosia (VAA). He did not hear syllable and word boundaries in the speech around him. He did learn to read at age 2, from his Dr. Seuss and Curious George books. This goes beyond what most children with autism are capable of doing, and he learned to speak normally just before age six, which is also beyond the capability of most autistic children.
I cannot generalize from my son’s development to what other people should be able to expect. I feel lucky that he has been able to co-author two books with me. On amazon.com search for Anders Cody Simon. A few people have tried to criticize me, and say that I wrote his chapters in our books, but I have the notebooks with his original writing, in big “mega-graphic” handwriting, which is typical in autism.
My son at age 51 still has an auditory processing disorder. This is more similar to Wernicke’s aphasia, which results from impairment in the auditory receptive area of the temporal lobes, as opposed to impairment in Broca’s speech assembly region of the frontal lobes. In autism, these deficits are from maturational failure. In adults receptive or motor aphasia are caused by strokes or other injury to these brain regions.
Posted by: Eileen Nicole Simon | February 20, 2014 at 04:42 PM
Why challenge a high functioning autistic person who lacks the ability to empathize? It's pointless.
Posted by: Diane W Farr | February 20, 2014 at 02:55 PM
Alissa,
Your comment was completely irrelevant to the topic of the article. Can you do nothing but stand on the side and demand attention? Who is trying to eliminate you? NO ONE! If I am able to recover my daughter to the point where she can speak and interact with people in a somewhat relevant way, she will be happier and able to make friends, and her ability to function in the world will NOT HAVE ANY IMPACT ON YOU AT ALL! You have no clue as to how our children suffer, and no interest in anyone but yourself.
Posted by: cia parker | February 20, 2014 at 01:20 PM
You're right, John. I just imagine him being briefed continuously on how vaccines are crucial for public health, in step with what we see in the press, but much more intensive. And I think he gets it not only from within our borders, but from international entities, an international cartel. You know. I think they do everything that they can do to make his stepping out of line impossible and I think they would do that with any elected official, with the most intense effort directed at the top. I'm not making excuses for him, but I think that's what's going on. He's been cornered and controlled in a lot of areas. This is how the game (that the people lose) is played. Look what happened with the VICP hearings. One minute they were scheduled and backed by Congressman Issa and the next minute, poof, gone.
I wish that he could/would stand up and say enough and push aside the negative forces and forge ahead no matter what it takes onto the right path. But as smart as President Obama is, he is no Andrew Wakefield. Few people have the moral fiber and courage to stand strong against such threats and opposition.
Posted by: Linda | February 20, 2014 at 12:19 PM
Linda
Obama would surely be credible if he turned round and said that he thought that terms of the debate were no longer aceptable. He's not going to do that because not only has he been for ever deficient on moral substance having now been elected for two terms he will have his eye's set on how much money he can make when he leaves office. Bachmann was always very vulnerable for her fringe views and her poor grasp of detail.
Posted by: John Stone | February 20, 2014 at 10:43 AM
CMO,
I was wondering the same thing. I think the answer is he would get the Bachmann treatment, so swift it would bury him politically like an avalanche. No one, not even the President, and maybe, I'm thinking, especially the President, is out of reach of the thugs.
Posted by: Linda | February 20, 2014 at 10:05 AM
Politicians feign concern. Autism self-advocates, at least those posting here in the past several weeks, demonstrate that they don't have the insight, judgement or compassion to advocate for anyone. They don't make believe that they care like the politicians do, not that that would be an improvement. Is it any wonder that these two groups working together in leadership roles are a disaster?
Posted by: Linda | February 20, 2014 at 09:04 AM
One would think the President would invite Dr. Nancy to the White House to give the family flu shot.
Could you imagine what would happen if the President demanded the simple vaxed/ unvaxed Autism study approved by Congress in 1999 ???
Posted by: cmo | February 20, 2014 at 08:53 AM
David
Fundamental problem with John Gray (whatever his qualifications) is a basic lack of understanding of the science. The only "science" disproving a link between vaccines and autism are a host of dodgy conflicted statistical studies. Such studies would be incapable of discounting the possibility of a causal link in some cases even if they were properly conducted - as it is they have mainly been conducted to disguise one, while the VICP has been known to compensate cases.
Posted by: John Stone | February 20, 2014 at 07:56 AM
It is very troubling that Nate should have intuitions about the capacity of MelissaD's 11 year-old who he has never met(and who by the way is a boy not a girl). Moreover, Melissa is by him characterised as a persecutor not a protector. Really a below the belt comment based on zero knowledge.
Posted by: John Stone | February 20, 2014 at 07:45 AM
@ John Gray,
No doubt your grades in Med School were straight A's and you graduated with highest honors!
Congratulations on perfectly memorizing every one of a million useless details drilled into you, by professors and doctors most certainly having Pharma & CDC grants, and who excused a few classes while going to expense-paid symposiums at lavish resorts.
By the way, don't forget to get your yearly mercury/formaldehyde-laden Flu shot! -- See you in the Alzheimer's ward! Cheers!
Posted by: david m burd | February 20, 2014 at 07:42 AM
she is articulate, Melissa, you just haven't given her a chance yet.
Posted by: Nate Watkins | February 20, 2014 at 03:00 AM
Re “developmental language disorder”, there is super-duper good news afoot. Some verry severely disabled autistic teens have broken through and proved that they are not the least bit lacking in language. Please see my article on “Ido in Autismland” at flipsidenews.net, in Australia.
Re the White House, etc, any of you Yanks over 25? Then get right out there and run for Congress. It is easer than you think. This is an election year for the legislature. Kindly contact mary.maxwell at alumni.adelaide.edu.au if you want me to give you a rapid prompt on this task. I swearda God ya gotta do it. There is no other way.
Posted by: Mary W Maxwell, PhD, LLB | February 20, 2014 at 12:59 AM
Comments posted by Ahmed Rockz and Alizza Johnson frustrate me to no end and are a constant thorn in my side that the diagnosis of our children using the term autism leaves people with the wrong idea about the issues we are dealing with. My husband has even made the comment that we need to stop using the term autism to describe our daughter's disability because everyone we come into contact with assumes our daughter suffers from the geeky socially awkward condition the media keeps parading on TV. People are surprised when they finally meet our daughter because she is nothing like the 'autism' they see on TV. TV autism is really not so bad, just some socialization difficulties that a little bit of behavior therapy will do wonders for, but then of course that is the image that has been purposely ingrained in the general public and so that whoever is President can continue ignoring the catastrophic implosion of our country's health and well being.
Alissa, I'm assuming you have an autism diagnosis, and so does my daughter. But unlike you my daughter is profoundly disabled and needs constant supervision 24/7. She is 18 years old and still cannot write her name legibly nor count above 12. She has the communication skills of an 18-month-old. Her cognitive disability aside, she has severe gut issues, seizures everyday, OCD, headaches, allergies, always fighting an infection of some kind, multiple meltdowns daily, etc. Despite the extreme daily stresses her "autism" puts on those around her, we love her unconditionally and work very hard to give her a better life in all ways possible.
Ahmed and Alissa you may feel autism is a difference that is healthy and incredible, but your type of autism is nothing like the autism many of our children suffer from. My daughter had a huge cognitive regression and severe gut problems after her vaccines as a toddler and was given an autism diagnosis as a result. She should have had a diagnosis of regressive encephalopathy. But then that would have been politically incorrect when one is trying to hide vaccine damage. So my advice to you is that you need to bring up your issues with Ari Nei'men and the IACC because they are the ones making the decisions to fund all those genetic studies that will help them identify what genes predispose to autism for 'extinguishing' or what drug therapy will best 'extinguish' autistic behaviors, because God knows they are not researching my daughter's kind of autism.
Posted by: Donna K | February 20, 2014 at 12:37 AM
Alissa I am glad for you and Ahmed maybe not sick for you, but for hundreds of thousands of our kids with autism they are suffering and sick. Get used to us advocating to heal them and to keep other children from suffering from the same fate. I wish my 11 year old could be as articulate as you Alissa, but he can't because he can only speak in 1 word utterances. Think about that. He has pain sometimes and can't tell me where or from what, how is that happy? How is that not sick? I really am glad for those of you who are high functioning on the spectrum, but I am really tired of those of you that act like you know how our physically ill, non-verbal children feel. You can't. I can't even imagine how frustrating it must be for those like my son who can't communicate the most basic of their wants and needs. I try my damnedest to give him a happy life, but I can't believe it could be when he spends so much time frustrated and agitated by his senses. By the way, I love my child with all my heart (and I will try to heal him until my dying day), as do most of the parents who post here...
Posted by: MelissaD | February 19, 2014 at 10:58 PM
The CBS link given below; says page not found.
Ahmed Rockz;
As far back as the 70s they admitted that vaccine injuries lead to brain injuries.
That kids with vaccine reactions/injuries from the DPT shot showed autism like symptoms.
That is a fact.
Common sense; let alone the science would lead you to believe from that alone that autism is the result of a brain injury.
Posted by: Benedetta | February 19, 2014 at 10:35 PM
The longer this goes on the less excusable it becomes. Obama, "You Haven't Done Nothin'."
Posted by: jen | February 19, 2014 at 08:22 PM
I am happy this way. Love me as I am. Just because I am not just like you doesn't mean I need to be "extinguished". Someday, when your child gets older, the realization will seep in. That you want them to be a completely different person with the same face, and it will hurt. Accept your child's abilities. Admit that many are incredible. Help your autistic child turn into the worthy super human they were meant to be by giving them things to fuel their fire on what fascinates them. Then bask in the happiness you have given them. That is how you raise an autistic child. Get into it with them! Go change the world with them.
Posted by: Alissa Johnson | February 19, 2014 at 07:44 PM
John Gray, the brain impairment underlying developmental language disorder should have been common knowledge decades ago. I will continue to point out the October 1969 issue of Scientific American in which damage of brainstem auditory centers was reported.
In case you think that article might be out of date, look in PubMed for Kulesza and Lukose. These scientists found auditory system damage in individuals with autism, and the same damage in laboratory rats exposed during gestation to valproic acid.
Also, the polio vaccine was developed in the 1950s. I doubt you would consider that science to be too old.
In the 1969 Scientific American article, damage of the auditory system was caused by asphyxia at birth. Many children who develop autism suffered a difficult birth. However, note that nuclei in the auditory pathway are also injured by mercury, lead, alcohol and other recreational drugs, herbicides, pesticides, chemotherapy drugs, nerve gas, and probably much more. Autism has many causes. All affect language development. Toxicology not epidemiology is needed before vaccine injury can be ruled out as damaging to the brain.
The auditory system is vulnerable because it has higher blood flow and metabolism than any other area of the brain. For more see the presentation I made in November 2008 at the IACC meeting, http://iacc.hhs.gov/events/2008/slides_eileen_simon_112108.pdf
Eileen Nicole Simon, RN, PhD (Biochemistry)
Posted by: Eileen Nicole Simon | February 19, 2014 at 07:04 PM
Autism isn't a sickness
Posted by: Ahmed Rockz | February 19, 2014 at 06:35 PM
John Gray
Or as HHS HRSA officials put it to Sharyl Attkisson and David Kirby:
"The government has never compensated, nor has it ever been ordered to compensate, any case based on a determination that autism was actually caused by vaccines. We have compensated cases in which children exhibited an encephalopathy, or general brain disease. Encephalopathy may be accompanied by a medical progression of an array of symptoms including autistic behavior, autism, or seizures.”
http://www.cbsnews.com/8301-31727_162-20016356-10391695.html
http://www.huffingtonpost.com/robert-f-kennedy-jr-and-david-kirby/vaccine-court-autism-deba_b_169673.html
Only a shill or an idiot would be taken in by the semantics.
Posted by: For John Gray | February 19, 2014 at 06:18 PM
Big Pharma and other huge corporations know way before we do who will play ball with them. Then they throw in all their money and support to that person. The choice we have is very small and maybe none at all. Obama is no different from Bush, or all the others. We could never count on a president or even our reps. We, the people, have to be the change for autism. (kudos to Anne Dachel)
Posted by: Maurine Meleck | February 19, 2014 at 06:03 PM
I mostly blame the criminal gang continuously feeding him lies. He doesn't have a medical background and his time is filled with a bazillion issues. I am not making excuses, but I think he has had the wool pulled far over his eyes by the CDC, NIH, etc. - the same gang working on the American public 24/7. Every attempt from the autism community is countered by the gang. It's like a war to them. They are on constant alert to keep him from the truth of what's really happening. I think that's the scenario. Now, appointing a Monsanto insider to guard the food supply, that's another story. Maybe. It's hard to know what goes on behind closed doors.
Posted by: Linda | February 19, 2014 at 05:06 PM
Studies showing a "link" between vaccines and particularly the MMR vaccine have been thoroughly discredited. These studies have been shown to be frauds.
We have no more information on the cause of autism today than when the first case was diagnosed; however we do know that vaccines are NOT the cause.
Posted by: John Gray | February 19, 2014 at 04:47 PM
Many of us wrote to politicians trying to convince them to pay attention to vaccine induced holocaust of American children. Most of us received a polite form letter at best, which proves that they don't care a bit. We must remember that US in not a democratic state anymore, it is now a pure fascist plutocracy, which means that rich thieves and criminals always win. The government serves them while exploiting the people. The only defense weapon left to us, IMO, is general strike and refusal of all vaccinations. The problem is how to reach the people who are still naïve.
Posted by: no-vac | February 19, 2014 at 04:30 PM
In my humble opinion .. I lay equal blame for the lack of accomplishment identifying what has "caused" the autism epidemic on our last two Presidents. Consider ..
Former President Bush .. a Republican .. served 8 years in office .. and .. in 2006 signed into law the Combat Autism Act ..ignoring the prescient warning of the late Dr. Bernard Rimland .. who stated the Act as then constituted .. should .. and eventually .. would .. be knowned as the "Pretend Combat Autism Act".
Can ANYONE deny the Combat Autism Act has proved to be anything other than a grand PRETENSION?
Enter today's President Obama .. a Democrat .. now serving his 5th year in office .. and .. without ANY criticism of the CAA's dismal record of accomplishments during the Bush years .. nor .. holding anyone personally accountable for that lack of accomplishment .. continued the convenient political decision of his predecessor .. dutifully.. somberly .. recently signing the "reauthorization of the Combat Autism Act".
My friends .. the PRETEND Combat Autism Act is a "bi-partisan" nightmare for the people .. as it began as .. and .. continues to serve .. as a "fig leaf" .. to benefit the POLITICAL interests of BOTH major political parties.
Hey .. they're really doing all they can.
AND .. SO .. THE BAND PLAYS ON ..
Posted by: Bob Moffitt | February 19, 2014 at 03:43 PM
At the time Brian Deer's original attack on Wakefield Carole Caplin, Cherie Blair's former 'style guru' wrote in the Mail on Sunday:
"Ever since concerns about a possible link between the MMR vaccine and autism first surfaced more than seven years ago, it's been crystal clear that extremely powerful forces would like nothing better than to suppress public debate about the issue and discredit anyone questioning MMR.
"These forces consist of very senior Government health bureaucrats, who advise our politicians, and leading figures in the British medical establishment, who advise the bureaucrats.
"Senior civil servants and doctors are people who do not like their authority challenged in any way.
"They're not interested in listening to mere mothers, whom they would undoubtedly dismiss, with a patronising wave of the hand, as 'hysterical females'.
"So when a courageous lone voice, such as Dr Andrew Wakefield, emerges from within their own ranks, the medical and health establishment see him as a traitor who must be crushed.
"That's why I am deeply saddened and angered, but not at all surprised, by what's happened to this compassionate man in recent days, with a series of orchestrated attacks on him in the media..."
http://www.dailymail.co.uk/columnists/article-259834/Why-allowed-question-MMR.html
Of course, Caplin was considered a somewhat whacky figure but she had access to the circles. It is almost identical to what a former Department of Health science chief told the same newspaper a couple of year later:
"Dr Peter Fletcher, who was Chief Scientific Officer at the Department of Health, said if it is proven that the jab causes autism, "the refusal by governments to evaluate the risks properly will make this one of the greatest scandals in medical history".
"He added that after agreeing to be an expert witness on drug-safety trials for parents' lawyers, he had received and studied thousands of documents relating to the case which he believed the public had a right to see.
"He said he has seen a "steady accumulation of evidence" from scientists worldwide that the measles, mumps and rubella jab is causing brain damage in certain children.
"But he added: "There are very powerful people in positions of great authority in Britain and elsewhere who have staked their reputations and careers on the safety of MMR and they are willing to do almost anything to protect themselves.""
http://www.dailymail.co.uk/health/article-376203/Former-science-chief-MMR-fears-coming-true.html
Posted by: John Stone | February 19, 2014 at 03:37 PM
Cia,
Speaking as an Englishman I see Blair as the new model politician and Obama is certainly his heir - hollow men on the make.
John
Posted by: John Stone | February 19, 2014 at 03:17 PM
Our political leaders are bought and paid for many times over by companies and individuals. Sad but true. Getting reelected is their primary motive. In my opinion, the only way to ever change the current status quo is for every person that has a child on the spectrum to vote as a unified block. Set an agenda and only vote for those that agree to support it. Without that, we will never obtain the influence over our corrupt system of government. A vote is the only thing that can compete against a dollar and the other side will always have more dollars than us.
For a brief moment I thought that an Obama presidency would be different. While it may not have been audacious for me to hope for a change in our governments approach to autism it is now apparent that it is audacious to think that those in power will do anything to slow the epidemic.
The money that this administration has squandered and the complete lack of action will be a part of his legacy. Maybe the Pres will invite me over to the White House for a beer to discuss the economic and emotional toll that autism has on families. Hell, I'll even buy the first round.
Posted by: Mike | February 19, 2014 at 02:57 PM
Dave,
Reminds me of Tony Blair, remember when he gave a speech about how important it was to get your kids the MMR, but when a reporter asked if little Leo was getting it, he refused to answer, I think maybe he said it was none of his business. I'll bet it would have been over Cherie's dead body. You're right, they know.
Posted by: cia parker | February 19, 2014 at 02:20 PM
I wrote him last year, and didn't get even a form letter back. I've written to all my state and national legislators, and no one has ever written back. Oh, Claire McCaskill said how much she supported autism screening. Big deal. I hadn't said a WORD about autism screening. It's like that Robert Heinlein novel with the aliens putting something on everyone's backs that controlled their thoughts and actions. Big Pharma as the Puppet Masters.
Posted by: cia parker | February 19, 2014 at 02:18 PM
JerseyGuy,
Ooof!
Unfortunately, shuffling cash to politician is not going to happen. After wading through a 4-inch stack of EOBs and medical bills this morning, I'm now reworking our budget. I'm hoping we can stretch our dollars even more than we are.
I know most (if not all) of the work our community needs to do (and will continue to do) falls on our shoulders. It's sad that it has to be that way. But, I've met more "get 'r done" types of folks here and would gladly bet what little money I have on them instead.
Thanks, Cathy
Posted by: Cat Jameson | February 19, 2014 at 11:44 AM
I remember a few years ago when this President had just finished comments to the media about how important it was that everybody get their H1N1 shots. As soon as he finished a reporter asked if Sasha and Malia (sp?) were going to get theirs. He couldn't get away from the podium quick enough. He almost stumbled in the mad dash. Oh yeah...he knows. You won't see the first children lining up for the CDC schedule. Ever.
Posted by: Dave | February 19, 2014 at 11:16 AM
John, Cathy and everyone, what I wrote below I also sent to MA Senator Elizabeth Warren in a request to meet with her in person. I also wrote to her and Senator Ed Markey, and my new representative, Katherine Clark to express my anger over the recent IACC report to congress. I asked them not to reauthorize the current IACC.
Throughout the IACC report claims are made that public concerns have been included in the “Strategic Plan,” which they have not. Many of us have submitted written comments requesting investigation of environmental causes. Some of us have attended meetings in person, where we are held to a strict 3-minute time limit. Time limits are valid. But all comments should be thoughtfully discussed, with back and forth conversation.
Why does the Strategic Plan include nothing to address developmental language disorder? This is the most serious handicap of children with autism. But look at their most over-funded goal, 3.L.B: Identify genetic risk factors in at least 50% of people with ASD by 2014, and the IACC Recommended Budget for the next 3 years is $33,900,000. Funding for 2008-2013 was $169,806,458.
Three members of the current committee are “self advocates” who claim that autism is a difference, not a disability. But autism is severely disabling for most of its victims. The increasing incidence of this disability over the past 2 to 3 decades is the crisis the Combating Autism Act was intended to address.
We, the public, have a duty to make ourselves heard, and we have the right to more than form letters in response.
Posted by: Eileen Nicole Simon | February 19, 2014 at 10:54 AM
The trouble with Opharma is that he is intelligent enough to know what he is doing.
Posted by: Mercky Business | February 19, 2014 at 10:43 AM
Cathy and Eileen: Pharma contributed $888,000 to Obama's 2012 campaign. If you can match that, I'm sure he'd be happy to speak with you,
Posted by: JerseyGuy | February 19, 2014 at 10:37 AM
There is much to be disappointed about in Obama.As far as autism is concerned,appointing Ari Ne'eman to The National Council on Disability is one,the other is the Affordable Care Act.
I am one of what I guess are the lucky few,who has found a real medical cause for my autism.Cerebral folate deficiency,and multiple inborn errors of folate metabololism.The autism part is well under control with folinic acid,and a milk free diet,but I still have a lot of very serious medical problems.In the last three months alone,going without the B12 for my anemia for a month not only brought it back,but also a severe systemic polyneuropathy,a grand mal seizure,and all sorts of post seizure sickness.But because I was still on my leucovorin,I had no regression,or worse,like I would have had a few years ago.
The cost of medical treatment for autism is finally getting the recognition it should have all along.But the type of treatment you see mentioned in news stories and journal articles is always something like ABA.Treatment related to complex medical problems,be they autoimmune,or metabolic/mitochondrial is never discussed.
Parents of children like this don't need to be told about the cost of IVIG,or multiple prescriptions that have to be compounded every month.Or the cost of traveling to see a MAPS doctor in another state,who expects to be paid at the end of the visit.Or having to pay for rare and experimental tests that are only done at one or two hospitals in the world.Usually these are the only options you have,since most doctors are completely unaware of these diseases,and think everything is "just a part of autism".
None of this was of course covered by the ACA.
As for the IACC,I would love to be on the IACC.I bet there are a lot of parents,and doctors that work in the trenches every day who would like to be on it as well.People who may not have the celebrity status of a John Elder Robinson,but know all about the down and dirty everyday reality of autism with intellectual disability or complex medical conditions.I would like to see the next president offer an open application period for the IACC or the NCD to any and all interested parties.
Posted by: Roger Kulp | February 19, 2014 at 10:30 AM
I talked to a mother yesterday that took her talented son off to college thinking he would make a doctor; but he only returned home less than two semesters all broody, moody, unpredictable.
I was there through most of her ordeal, before it turned to drug abuse.
I had some answers from one of her questions she asked me about vaccine reactions and my son.
I told her plenty that I have been so shy about.
She found it disturbing that her son's freshman year of college he did get a couple of the Hep Bs was never finished the series.
Posted by: Benedetta | February 19, 2014 at 10:26 AM
"a cradle to grave, completely pharmed society" ...that is so true John Stone. As I like to say Welcome to the United States of Pharmerica!
Posted by: SarahW | February 19, 2014 at 10:19 AM
Eileen
I suppose "leveling the playing field for all Americans with disabilities" might mean making sure everyone has one! Screening programs are also potentially quite sinister, lining people up for medication: a cradle to grave, completely pharmed society.
John
Posted by: John Stone | February 19, 2014 at 08:14 AM
I wrote a letter to President Obama on December 12, 2013 asking if he could do anything to stop the obstetrical procedure of clamping the umbilical cord immediately at birth. I know these letters are read and responded to by aides, so I provided a link to a TED talk by pediatrician Alan Green:
http://tedxtalks.ted.com/video/Alan-Greene-at-TEDxBrussels;Featured-Talks
I also sent a link to a presentation I made at the Interagency Autism coordinating Committee (IACC) 5 years ago:
http://iacc.hhs.gov/events/2008/slides_eileen_simon_112108.pdf
I received a form letter response from President Obama to the effect that he remains committed to leveling the playing field for all Americans with disabilities, including those with autism. He wants to screen children before age 2, and continue to work with congress, experts, and families to improve ASD programs. In other words nothing should be investigated to prevent autism.
I wrote back to President Obama and expressed my disappointment to have received only a form letter response, which did not even make any mention of the obstetric procedure I think may be responsible for many cases of autism. I await a second response, which will likely be the same form letter.
Posted by: Eileen Nicole Simon | February 19, 2014 at 07:49 AM