Vaccine Fixation But Where’s the Education
March 11, 2008 by Kristina Chew, PhD
Filed under Health
Looks like everyone has to get in their say about the case of Hannah Poling and the government’s recent concession that her underlying mitochondrial disorder was aggravated by receiving nine vaccines and led to “symptoms like autism,” as today’s New York Times puts it in an editorial entitled A Puzzling Autism Case. The NY Times calls for the “court for vaccine compensation [to] unseal documents involved in this unusual case so that experts, families and their doctors can better understand exactly how Hannah Poling, now 9 years old, came to be harmed after receiving a battery of shots when she was a toddler.”
And just imagine how much more we’ll all have to debate, argue, and blog about this issue—-which has lately become seemingly the only topic discussed regarding autism—if that happens.
In the meantime, both the New York Times and Time magazine in an article today let themselves get diverted from some of the most pressing and real issues facing parents of autistic children and, too, parents of autistic adults who need services and supports. No one can deny that it’s important to understand what causes autism. But the concerns about a vaccine-autism link have quite diverted the attention of the public, and of the autism community itself, from concerns about education, therapies, and services that autistic children and autistic adults need today and now, from an individualized, appropriate school program to employment to housing opportunities.
Neither the New York Times nor Time magazine, nor most of the media, has been giving sufficient attention to these issues and to the need for sufficient funding and trained teachers and staff. Is this because there is the assumption, the thought, the hope that—-if we can only pinpoint the cause of autism, no one will have to worry about special education, supported employment, and group homes and other supported living environments? Time notes that Hannah Poling is
now a third grader in public school, working one-on-one with teachers in a special-ed classroom. She continues to struggle with the effects of autism and also seizures. Her parents are hoping her case will spur additional research into the causes of autism, including the roles of vaccines and mitochondrial disorders.
I’m very glad that Time has here provided a sense of the education that Hannah Poling is receiving; one hopes that it is sufficiently individualized to address her challenges and work with her strengths. I am not sure what special education services are like in Athens, Georgia, where Hannah lives; my own son—he is 10 years and 10 months, so part of the same generation as Hannah (and he did not become autistic from a vaccine; Charlie was born as he is)—has flourished with the right kind of education, an education that my husband and I have devoted all of energy and resources towards. Hannah and Charlie will grow into their adulthood at the same time and it’s time now to start providing the best services, supports, and education to help them reach their full potential. I hope to read more about these concerns and about what lies ahead for Hannah Poling, and about her reaching her full potential in no small part thanks to her parents who have long been walking a path similar to the one Jim and I have.
So the possibility, perhaps even the probability of finding a cause, and therefore, being able to prevent autism is a diversion from education?
You make it sound as if the events in the Poling case are trivial. And as I told you before, the Polings and their doctors have said there is no evidence that Hannah had an underlying or pre-exisitng mitochondrial disorder. And Hannah Polings has “autism,” DSM-IVr autism not “symptoms like autism.”
Aren’t you at all interested in why the government is so flagrantly distorting what actually happened to Hannah and her medical record?
Are you interested in the future education and needs—housing, employment, trained staff—-of autistic children? Much to discuss and thanks for your questions.
The two concerns are not exclusive. You can have attention on cause and treatment. However, education and services alone are not going to be enough, the underlying cause(s) needs to be found so there can be some progress on prevention and better treatments.
John Gilmore: “Aren’t you at all interested in why the government is so flagrantly distorting yadda-yadda-yadadda, da-blah-blah-blah?”
Brilliant question, John. Now, I’ve got one for you: Have you stopped beating your wife yet?
Good grief, even if they figured out how to prevent all cases like Hannah’s in the future it wouldn’t put a dent in the future number of autistic children. She’s got a very rare mito condition, Mr. Gilmore! Does your child have this same condition? Did your child have the same experience as Hannah? Mine didn’t and people like YOU Mr. Gilmore work on denying that people like my kid and me even exist. Autism has been around for a long, long time Mr. Gilmore, before vaccines and before you and your extra-large cranium entered the picture blocking other more important issues, like the existence of so many autistic adults who are undiangosed and misdiagnosed. There isn’t a new “wave” of autistic kids who will grow up and need help. There’s a steady state of the same number of people, it’s just that kids of my generation didn’t have flaming nutjobs calling them so much toxic waste or walking piles of destroyed mitochondria or victims of Lyme disease or poor victims of Candida yeasty beasties.
ASA and Autism Speaks and even some mercury parent orgs like Unlocking Autism say there are 1. 5 million people in the US with “autism” or “ASDs”. That represents a steady rate of autism about 1 in 150 for the whole population, across all ages, in the US.
Most of the 1 million adults in the US are having their existence denied by your friends Mr. Gilmore and I for one, am not impressed by your efforts. Why don’t you try to emulate what is being done in the UK where the NAS is reaching out to find and help all their (hidden horde of) undx’d adults????? Why not? No one to sue? No cash payoffs? No big drama-queen moments for Lenny so that he can make Mengele references, and no big drama-queen moments for Rick Rollens and his tsunami references?
Could you point out this “flagrant distortion”, and explain why the underlying medical conditions that have been prior affected by various diseases would appear because of those diseases? As someone’s noted, you really begged the question here.
And, yes, if you really look at the concession, the Poling’s case is far from wide reaching legally.
Let’s leave it at that. I’m not going to go after all of the underlying assumptions.
Cliff
I really think you should rename the name of you blog to something that better reflects the content. Something like VaccinesNotTheProblemVox. It seems that 2 out of every 3 entries are about how vaccines are not the cause. OK, we get what you are saying. You only need to repeat it every so often to get your point accross.
Hope you will check out the archives to note other topics here on Vaccinae Non Curae Vox.
Regarding the subject matter of late around here: What can I say but O Tempora, O Mores!
Over at Neurodiversity.com, Kathleen Seidel reviews some of the published decisions of the Vaccine Injury Compensation Program. She notes “nine instances in which compensation was awarded for the lifelong care of children and young adults who were diagnosed with autism or related conditions after they sustained documented, verifiable vaccine injuries”—-she writes:
My opinion, having an autistic daughter around the same age-range as Charlie and Hannah (Both cute kids BTW). I also agree that this should not be an either/or, but I think Kristina has a point on focus.
[step up on soapbox]
I am interested in the science and medical findings around this issue, because right now “autism” to me is an amorphous description of what I believe will turn out to be a wide variety of disorders. I am less interested in speculation as a leap to conclusion as to the cause. This is just my take after several years of personally having heard many posited causes and cures presented with loud surety only to note that substantial uncertainty continues to exist and that many of the claims wither away either in popularity or under close research scrutiny, or else shift to a different goalpost.
On a day to day basis, in fact right now…today and everyday, there are equally pressing concerns of educating and providing appropriate supports and access to those who don’t fit easily into the round peg system of education and aren’t able to find meaningful employment or dignified living arrangements. I suspect that there are large numbers of parents losing sleep over those matters…today and on many other days.
If the medical identifications and solutions are slow-coming, if ever, and continue to be immersed in attention-drawing controversy, then immediate issues of
whether IDEA is sufficiently funded or ever will be,
whether evidence-based specialized instruction under qualified, trained personnel is being used so that funds are efficient and effective for both taxpayer and student,
whether bucks are being passed from system to system or to families in a way that represents discrimination because a child has a learning difference/diagnosis and none of the expected and mandated channels are operating as they say they are on paper, and
the ethical and humane treatment of those at the mercy of bureaucratic systems, etc. , etc.
will continue to be missed in the media.
These are, and will continue to be important in the HERE AND NOW; to me it’s a 500 lb gorilla in the room that is given short shrift in the emphasis on the sexier medical aspects of “autism”.
Right now the blogosphere and news is burning up with stories on the Polings and much speculation on MtD, vaccines, etc. I would be pleased if at least an equal attention across as many sources at the same time would be given to the structural, educational, vocational needs of this cohort of children and adults and why people have to move with their feet, spend down their retirement, struggle with different bureaucracies denying rather than providing their stated functions, or why after a bazillion repetitive blue ribbon commissions issuing fat and important sounding reports that there is still dismissal by legislatures and argument about how to best educate these children?
The vaccine scenario is looking for scandal, or at least gives strong appearance of such. The circumstances of support for and societal treatment of children and adults with cognitive and behavioral differences and the lack of supports for families IS a scandal.
[step off].
Thorton,
The beauty of this blog is that Kristina knows that respectable argumentation does not consist merely of making assertions, valid or otherwise. She is respectful enough of readers that she is willing to go to the trouble of providing ample resources, such that others may evaluate the information independently, and then decide for themselves.
Now, given that so few of the rest of us are willing and/or able to rise to the example she sets, I think it’s only fitting that we allow her the occasional luxury of drawing a conclusion or two of her own along the way. Don’cha think?
Or did I just miss the late-breaking memo about the Vatican adding depth of analysis to their new list of “deadly sins”?
@dkmnow and Regan and, too, Thorton,
multas gratias vobis ago!
Again, as I wrote in my post, no one denies the need to investigate the causes of autism and (quoting Regan) the “sexier medical aspects of ‘autism.’” I’m an educator and education is an issue close to my professional and personal concerns (though, the Latin, Greek, and—of late–Roman history that I teach my students is far different from what Charlie learns in his special ed classroom).
I’ve been talking more and more to parents with older children. With adult children who, having received many years of great education, are facing huge question marks that have no easy answers, and that will not be solved fully by any court decision or government concession (though some legislation could certainly help). These parents had and still have plenty of questions of how their child became the way he or she is, but they also have real issues facing them, including their own aging and the need to teach a child whose needs are great to live independently.
Right now, the focus of the autism community is heavily weighted towards causes and scientific and medical research in this area. But there are vast needs for services and supports and these needs are not something to be afraid of, but to look at realistically and start planning for.
Soapvoxing away I go……
dkmnow,
I thought you and John promised to stop on the same day. Did you break you promise already?
/ Sarcasm
Read the article Jon Poling wrote on http://www.ageofautism.com if you are interested in the truth rather than government spin.
I am on the board of ACHAMP in addition to our work on thimerosal and vacine rights we work on a wide variety of issues. Just today ACHAMP activists won the passage of a major injurance bill for people with autism in the Oklahoma Senate. We have similar bills pending in other states. I got an insurance non-discrimination bill passed in New York. We are leading the fight in NY to get A8316 passed which would do a comprehensive count of all people with autism in NY regardlass of age. So instead of writing an endless stream of online rants most of the people I associate with are actually doing things to benefir people with autism.
And Ms. Clark other than a prodigious output of online chatter what have you ever contributed to people with autism and their families?
And Dr. Chew other than running this blog what do you do to improve education for people with autism?
John Gilmore, BS, MPP
Yeah, Dr. Chew. What have you done for us today?
John Gilmore said,
“I associate with are actually doing things to benefir people with autism.”
Thank you John. I am glad to hear of the positive progress on Nick’s Law. I am also interested in these legislative events and do what I can to help people research and keep up to date on these matters that effect our kids. Good luck on those bills, since moving legislation is a hard row to hoe.
Just to keep it square, my contribution is to connect people to services and consultants, and share information on workshops, family grants and other that I see as helpful on an individual basis. I also donate materials and time to small organizations in my local area and run a small website that shares whatever free materials I can find so that parents don’t have to pay for every darned thing. It doesn’t compete with the abilities and assets of large organizations but I do what I can. I’ve been told it’s helpful.
Best.
@Emily,
“Yeah, Dr. Chew. What have you done for us today?”
It’s a tale waiting to be told…….
@John Gilmore,
“And Dr. Chew other than running this blog what do you do to improve education for people with autism?”
That is a very good question, Mr Gilmore, and I am very glad you asked it. Hope you will keep reading; if you would like me to reference past posts, I would be glad to do so. Thank you for your query.
Dr. Poling’s response can also be read as a comment on a post on Dr. Steve Novella’s Neurologica blog.
Chuck,
About me: 1) never been married; 2) never raised a hand to man, woman, child, or small furry mammal, even while I was busy being assaulted; 3) never make promises; 4) never make blanket statements.
OTOH, from certain exquisitely subtle weavers of insidious subtext who frequent the comments section of this blog, I have learned an enormous amount about how to paint oneself in the very image of sainthood while simultaneously destroying another human being in plain sight of all the world, and all without leaving a mark or arousing even the faintest inkling of suspicion.
We should be grateful that such folks drop by on occasion to offer us free instruction in our continuing education. Call it the Ike Turner School of Linguistic Persuasion. Something we should all aspire to, no?
It’s funny that people want to tell Kristina Chew what she should write about or not. This is HER blog, y’all… And then the self-righteous comments about who is doing more for the autism community… Please check your egos at the door. Kristina does her share of advocacy, but the difference is that she’s not bragging about it.
Kristina’s blog IS advocacy and she does an excellent job.
And those stories about Charlie
. ‘Hope he’s feeling better.
Best.
Well, well, I’ll have to join all of you on a soapbox.
Personally, I find that questioning what someone has “done” is some fashion as to position yourself as having done something “substantiative” is ridiculous.
I mean, so I’ve worked with the state of Nevada legislature attempting to get funding for autism treatment. I mean, I guess that’s not that much. Maybe, if you’re going to put some moral spin on it, a saving grace is that I haven’t even turned eighteen yet. But that’s not the point, is it? If you haven’t done “something”, or “enough”, in other words being a direct lobbyist, it’s not good enough.
But I think if there’s one thing I learned from my time doing that, it’s that without a consideration, all of that “action” will not amount to anything important in the long-term. As it stands, we’re throwing so much money into things which, to be honest, often wouldn’t have helped me as a kid will not help me now. Often, in fact, the life of an autistic is hurt so directly by such “advocacy” that it’s insane.
By placing themselves at the head of the “autism” table, organizations who have very little connection to autistic people can stand up all day and claim to represent the “autistic” people, especially for those who, at this time, really don’t have the underlying structure or breadth to represent themselves (and maybe never will, though I hope not). What voice are you representing, Mr. Gilmore? The “autistic community”? It’s certainly not mine.
Thus, there is tremendous value for putting out fair, rational informations and concerns about autism. I’ll take a rational, considered discussion about autism rather than throwing energy into a shot in the dark. In fact, I’d more loudly complain about it, but as a minority with a fairly limited room to talk, thanks to the stereotypes about “autism issues” which have been propagated thanks to groups like ACHAMP, I’ll be glad for whatever I can terms of a rational, considered view about issues the matter. Kristina has created one of the few places for that. Not only is it considerate to those like myself, it doesn’t create ridiculous claims as to representation. In that, it does a far better job with that advocacy than others.
So, keep it up. This blog is a valuable resource, and I don’t like people denouncing it on a presumptuous position of “action”.
Yes, Kristina’s done far more for me today and everyday, thank you.
Cliff
Regan, exactly what I was thinking, although I also know about other things that Kristina does and has done.
Cliff, well said.
Dkmnow, LMAO.
Fear and sensationalism sell; reason does not. The vaccine link gets so much coverage for the same reason Natalee Holloway was on the news every night for months. Blue eyed white girl abducted in Aruba!!! Vaccines cause autism!!! Both screaming, sensational headlines, intended to illicit fear, and grab attention (and viewers).
This is the age we live in. It’s not just the mercury militia that are terrorizing us. It’s the media. It’s those who consume media and create the demand for it. It’s our president. Bring it on, indeed.
Ms. Chew and Ms. Clark educated this mother more than – what is it called – ACHAMP? Never heard of it till today so I guess I will take a look at it. Thanks for the continuing education program Kristina ;0
The views that they have expressed helped me immensely when my teen was dx’d and helped turn a very dark time towards a more positive light.
May I also say that some of your readers are sooooo smart that I feel like a pygmy among giants. Thanks all!
Emily,
Dubious rhetoric aside, if not for John Gilmore’s recent visit here, I might never have learned the correct pronunciation of “tu quoque.”
@ Kate and too many others,
You’re too kind….just thank you for the sustaining words!
I do not mean to force my wants onto someone else’s web site. I certainly am not saying Dr. Chew isn’t doing enough, or that she is doing the wrong thing. I only meant to express that I am tired of hearing the same old arguments on the vaccine debate. Not that it is not important, I just keep hearing the same thing over and over from both sides. I haven’t heard anything truly new on the topic for a while.
Keep an open mind all of the philosophical people that visit this site.Facts are not always facts! I just listen take it in and seach for answers.I belong to a support group. Most of the children DID have a problem after vaccines. I will let you all know if the(DAN) protocol has worked in a few years.So far very good.I am not extreme about it just slow and steady.We do GFCF diet ,creams ,vitamins and baths.I know I am annoying for some of you.But one thing is true Kristina Chew has done a great job here! Wish you all well with your children. Dont ever give up on the healing of your children.Prayers and an open mind, happiness do wonders.I was not from a very wealth family but we had love and lots of prayers.This pulls you through tough spots. Thanks Kristina your story about your son was very special! You touched many lives here. Keep up all the geat work.
I think this is quite an educational site in itself, though I realize the need is for education for our decedents.
What I have gotten from the current round of arguments about this case, regardless of Spin factors is:
It appears unwise to administer as many vaccinations as possible in one sitting, regardless of who you are.
———————————————–
And while I hate the mans general lack of true logic, at least Geier got people (some govt agency) to address their lack of review about some of the potential dangers of adding dose after dose after dose and not paying attention to a cumulative ‘load’.
Now if they can get their head out (yes I’m inferring its there!) and quit having doctors expose folks to multiple threats in the same sitting I might feel we are making progress, regardless of what side of the syringe fence you sit upon.
Finally, if they can figure out what teratogens are still lurking about (PCBs anyone? DDT in Yosemite fish anyone?) that May be helping to induce the non-heritable forms of the condition then some of us folks that might not have been vaxed into this condition might get some relief. (Or at least some help, cuz I’m not just as dumb as I appear to be willfully, I could very well be this way due to heritable or non-heritable causes.)
@Thorton,
I am not sure there is anything truly new on this topic! So far I seem to manage not to have posted on it today. Best wishes—-
What have any of us done but get up every morning and do the best we can. We all have similar struggles and challenges as well as those that are very different. It is arrogant to ask someone what they have done implying that it is not enough. I know some days I get more done than others and years are the same way. We should not compare what we are doing and say I am doing more you less but realize that we all do what we can when we can and that is always enough.
And some days it just feels like I’m just running in place—but onward need to go.