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In an op-ed entitled Foul Shots in yesterday’s New York Post, Robert Goldberg charts what could be called the rise and fall of the MMR vaccine. The MMR was developed by microbiologist Maurice Hilleman, “saved millions of lives around the world,” and—in one press conference in 1998—was said to be linked to digestive problems in children and to have caused them to become autistic, and so began what seems to be a steady erosion in public faith about vaccines. Wakefield’s claims have been discredited; he has been accused of medical ethics violations and faces being struck off the medical record. Goldberg, the vice president of The Center for Medicine in the Public Interest in New York City, wryly notes:
And so April, Autism Awareness Month, becomes not a noble search for a cure, but an annual war on the bookshelves, as scientists and activists – often with no medical proof – battle over lifesaving vaccines.
That’s a not too inaccurate description of what this Autism Awareness Month 2008 has felt like, though the “war” (to use Goldberg’s term) is happening not only on bookshelves (he discusses Paul Offit’s Vaccinated: One Man’s Quest to Defeat the World’s Deadliest Diseases, Neil Z. Miller’s Vaccines: Are They Really Safe and Effective, Arthur Allen’s Vaccine: The Controversial Story Of Medicine’s Greatest Lifesaver, and Jenny McCarthy’s Louder Than Words: A Mother’s Journey in Healing Autism). That Autism Awareness Month is in danger of becoming Vaccine Awareness Month is all too apparent on the internet and in the blogworld: Type “autism” into any internet search engine and the chances of reading a story mentioning vaccines are very, very likely “So much,” Goldberg writes, “for autism awareness.”
Indeed: Why do some talk about “greening our vaccines when what needs first and foremost to be done is to educate our autistic kids?
1481 days ago
[...] So Much For Autism Awareness Robert Goldberg, the vice president of The Center for Medicine in the Public Interest in New York City writes about why Autism Awareness Month has become “not a noble search for a cure, but an annual war on the bookshelves, as scientists and activists – often with no medical proof – battle over lifesaving vaccines.” [...]
I’d like much to get a synopsis—thank you. It’s a two (plus) – headed effort, research and services.
Definitely not enough money goes to families! But the research is still important to try to improve the health and condition of those already affected, or maybe even preventing cases by knowing causes. (ie, spina bifida research after years yielded the folic acid recommendations during pregnancy). There are likely many different reasons people develop autism, making it more difficult.
Here is a good immune system review article for those interested: http://www.jleukbio.org/cgi/reprint/80/1/1
UNC, I have about 60 or so others citations from pubmed,too long to list here. Anyone else interested can email me for them as well.
Kristina, I can send you a synopsis of the final bill that gets passed here (session ends next Friday, so it’ll be soon) if you would like. I hope by making insurance coverage for some services available, families will be able to afford more services and our kids will have the supports to reach their max potential, whatever that is.
Education and services are something that (I think!) we can (?) more or less agree that we need and that there needs to “more” of: Better traing and supports for teachers and therapists. Better programs for all ages of students and for adults (and those programs would differ depending on individuals’ needs—-supports for autistic college students, day programs for others, job coaches…..). One frustration with all the $$ that (seem to) go to reseach are that those $$ don’t go directly to autistic persons and their families.
Agreed, Karen. The sad part is that it takes legislators and people in charge, so to speak, to experience autism firsthand before you can get some action (several people working on the FL bill have autistic children or nieces/nephews). Unfortunately, in the same year they’re considering insurance coverage that specifically includes ABA and services like OT and ST for early intervention, they’re horrendously cutting the state medicaid services used most by older children and adults (respite, other living services). I’m all for early treatment, but you don’t cut off those that it wasn’t there for at the time!
I am sure much of it is misclassification, but it’s interesting that 2/3 of the people receiving autism services under Medicaid in FL are children under 18 (and nearly all of them are 10 or over because the waiting list is 7-10 years for help!) Only 1/3 are adults (many may be MR misclassified). Two people over the age 64 with autism services in the entire state. As more correctly classified persons with autism age, it will definitely bring a new dimension to the term “autism awareness”. Nothing gets the public and gov’t attention like billions of dollars of costs.
I bowed out earlier because I thought that I was contributing to the spirit of Kristina’s post on Autism Awareness month being taken over by the quibbling about vaccines (and DAN doctors and DAN protocol and the medical research) instead of more pressing issues like the education of our children.
We can all hopefully agree that the issues we face daily in advocating for our children for their educational needs and life skills, providing for the day to day needs of our children, are uppermost on our minds. And don’t even get me started on the respite and other home services (sucks when even existent, excuse my language). The research and vaccine and DAN discussions are important, and we will have to agree to disagree on much of this, but what effects us most is the day to day education of our children.
There is awareness, so much so that I and other parents I know get complaints from NT families about why we have to keep bombarding them with “autism is 1:150″, etc. What these NT families haven’t heard, because I ask them, is what the day to day is like and that our children do learn skills, that there are sometimes big differences between our kids as it is a spectrum, and why special education is important, that these kids are growing up and there are adult autistics. I put that SPED reference in because here in Maine we have finally gotten a budget that is NOT slashing SPED and MaineCare and the adult services, like our governor was trying to do.
If we can’t stop arguing and agree to disagree on some of these issues to then hopefully provide a united front on the more important issues of education and our children’s day to day needs, then how are we going to get things done for our kids? Whatever you believe or hope for, a “cure”, “recovery”, or just basically helping your child to achieve their highest potential (my view), can we tone it down to focus on the most important issues, education and providing for the day to day needs, planning for the future and providing services for the adults who are in our society right now?
Okay, I am getting off my soapbox now, and hopefully I will hit the correct button and not erase this!
Everyone, I hope you have a great day!
Karen
Alright, TS. Sounds like it’s just about your bedtime. I’ll let you have the last word.
1485 days ago
[...] down to the last week-plus of Autism Awareness Month 2008. We’ve been asked to wear our awareness, to eat and shop and to give $$$$ in [...]
Tracy,
Thanks for your reply. Eleanor is a little older, but it does seem like only yesterday she was 5 and things are moving, but still too slowly for what might be needed. Hence my cautionary note.
Best to you for your efforts in FL. I did some advocacy work in my own state so I know it takes a lot of time and strategic juggling. I do some other work on other matters related to disseminating info on what is out there to help move it forward. As do many others. Thanks for your part.
Argh, like StorkDok, I fell prey to hitting submit too soon and lost my long post.
Regan, I feel you. Maybe your child is older than mine. I have a five year old. He can’t talk. He is not potty trained. He is a beautiful, affectionate and happy child. I love him in a way that makes my heart feel like it will burst. I want him to have the best treatment and best chances for being happy. But I will change his diapers until I am 110 if I can.
I have worked for weeks here in Florida trying to get a bill passed to cover autism under insurance. This is because I consider ABA to be treatment, along with medical intervention. I am not generally a blogger (it’s a waste of time LOL). I spend my time reading literature and advocating. I am still of the mindset that as a medically based diseases, autism and/or it’s symptoms can be alleviated by intervention. To me, it is about treatment, hope and love. And it will be until he gets better or I am dead.
UNCDoc–I love it. You try to insult me, misquote me, go on and on about no evidence when I sent a link from the perfect source, and then call me antivaccine. And then, tell me to stop being knee-jerk and defensive? You can’t expect to be a jerk and not get a little backlash, ok? I already am aware of BDNF and the early large brain effect that levels off with age, but clearly is related to the pathology. I know about prenatal effects such as diet and flu being factors for epidemiological increases in autism. So don’t ask for cytokine papers in one breath and tell me I haven’t read enough in the next, ok? I typed more to you earlier that I lost (blogging novice) so I’m gonna keep it short this time: don’t assume you know me. I am not a “mercury mom” and I am not a vaccine litigant. I find it one of many interesting avenues of study in autism. The CDC finds it interesting that high cytokines are associated with typical events such as fever and seizures. Regardless of the underlying cause of the cytokines (could be anything, infection, genetics etc–does not have to be prior vax), this is an interesting result since ctyokines are elevated in autism. Period. I didn’t say causation of vaccines, that’s YOUR words, don’t push that on me.
My personal guess is that they are already elevated before any vaccine, not because of one. That’s opinion however. I’ll send you links to the studies, you can email me at tss8432@yahoo.com. Seriously, the immune angle is interesting, even without vaccines, and you should look more into it. I am not saying that obnoxiously, as it seems you did to me.
One of the things that is involved in herpes virus activation is Nuclear Factor kappa Beta, and NFkB is inhibited by NO. Stress lowers NO and causes the activation of NFkB.
Activation of NFkB does cause expression of iNOS, and that is what causes the very high NO levels that occur during fevers. That high NO is transient and there can be compensatory feed-back rebound down-regulation (what I call the low NO ratchet) which lowers the NO level once the iNOS is cleared. This can cause long term reductions in basal NO which can persist though hysteresis. I discuss this in my blog in the mechanisms by which fevers temporarily resolve some symptoms of autism.
http://daedalus2u.blogspot.com/2008/01/resolution-of-asd-symptoms-with-fever.html
Kristina,
Couldn’t agree more. And Regan, I love reading your comments. I learn so much from you.
Amen, Regan. I’m the same way about my little one. Unfortunately there is too many lawyers and “victims” looking for a big payday, as well as charlatan chelators and fad therapists who have a major financial stake in shunting funding away from your more appropriate causes.
Nice to see a few sober posters around here.
It’s about treatment, research and identifying causes and cures for those severely affected.
————————-
My Eleanor is severely affected.
My point of view is somewhat different.
I would like some focus shifted off of the more sexy what-ifs, and onto the more prosaic which affects us daily and may for a long time if the hotly debated certainties of today don’t pan out, or don’t pan out for a substantial portion.
How to teach her best, how to have those who are competent and highly qualified do so, how to increase access to consistency of services for all and not just those who can pay out of pocket, how to provide more system support in coordinated roadmaps for families, how to plan for a humane support service so that those who are not going to “recover” by adulthood have valued, respectful means of living and contributing to society so that they don’t waste talents and capabilities that they do have and that we fund during the school years.
Despite our best efforts, there may be many things that cannot be cured, however that doesn’t mean that a useful and valued life cannot be in the cards if we make an effort to plan ahead or even better, make a real start (I think that I have already seen enough plans and reports to last a lifetime).
Okay. TS is correct. I did not quote her exactly. I apologize for that.
The reason that some live vaccines are not given to immune compromised individuals (such as HIV, chemotherapy, SCIDS), is because of the potential for reversion of viral particles to wild-type, and the child having insufficient immune surveillance and/or response to fight a true pathogen. So that is that. Autistic children are not immune compromised, so you are tugging at a red herring.
With regard to cytokines, I am not aware of that data, but I would be happy to review it if you provide a citation. Hopefully it has a large enough sample (with simultaneous controls) so that the results are meaningful. Cytokines tend to be elevated in any number of conditions, and are often non-specific acute-phase reactants. Still, if the profiles of autistic children are different, it would certainly be interesting. However, it would prove nothing about any vaccine causation. Keep trying, though.
The fact is, that autistic children are different in any number of ways, from a developmental standpoint, implying more genetics or intrauterine influences (no, not maternal mercury ingestion) than anything else. Anatomically they tend to have larger heads, and a recent study (which I can provide for you if you desire) also noted differences in ears and palates in a percentage.
You should familiarize yourself with the data on in utero brain growth, differences in apoptosis, and changes in the ability to modulate sensory input. During the last trimester (that would be before vaccines, by the way), this remodeling is taking place at a remarkable rate. A study recently in the Journal of Pediatrics, I believe, showed a very interesting increase in autistic behaviors amongst premature infants. It’s not difficult to see how this could occur, given the extreme sensory battery in the NICU (despite our best efforts to be developmentally supportive), could lead to all sorts of sensorineural developmental problems in susceptible infants.
In other words, there is a lot of fascinating stuff out there, and a lot to learn.
TS, you need to get past your hysterical knee-jerk anger and defensiveness. I would suggest you actually read some actual peer-reviewed research rather than spend all your time on anti-vax echo chamber web sites.
Peace.
Sincerely, UNCDoc (The Medical Doctor).
This is potentially getting off-topic—-we’ve been referring to “DANs” as if those who treat autistic patients using the DAN! protocol are all the same. But some practicioners have medical degrees, some don’t—-they may be nutritionists, chiropractors, etc…..perhaps not all DAN! practitioners are “equal” or the same…….perhaps….
C.S. Wyatt pointed us to the MIND institute’s link as one of just a couple very new “specialty” autism training grounds. I think the MIND Institute is great and would encourage you all to look at their position on vaccines, thimerosal and other potential environmental causes of autism; read the whole thing, not the first two paragraphs only. Here’s a quote “There is emerging evidence that some children are immunologically compromised and therefore may respond in an atypical way to vaccinations. We do not currently understand how atypical immune responses might influence the developing nervous system or how commonly such adverse effects occur. Further, we currently have no way to identify those children who might respond adversely to vaccines. ” But really, read the whole thing to get their flavor. They want more research to be done.That’s all I want too. (not just on vaccine issues)
These ARE the people I want training docs on autism. This all is about autism awareness, as this Kristina’s post is about. It’s about treatment, research and identifying causes and cures for those severely affected.
and read this intersting news release on abnormal expression of NK cell genes in autism:
http://www.ucdmc.ucdavis.edu/mindinstitute/newsroom/newsdetail.html?key=421&svr=http://www.ucdmc.ucdavis.edu&table=published
and this one on prenatal immune exposure:
http://www.ucdmc.ucdavis.edu/mindinstitute/newsroom/newsdetail.html?key=425&svr=http://www.ucdmc.ucdavis.edu&table=published
They note growing evidence which finds differences in the immune system in autism.
I don’t post these to make you heckle the MIND institute as becoming DAN docs (which are frequent presenters at their “distinguished lecturer series”; rather I am hoping you’ll realize I am coming at this from a peer-reviewed quality research POV as well. I just happen to see a DAN and I am not embarrassed by it.
@UNCDoc,
You pointed out the use of “everyone knows” as in “everyone knows X about vaccines and the immune system”—-it’s the rhetoric of the “absolute,” something to be wary of indeed.
UNCDoc,
If you’re gonna quote someone, get it right: I said ““Everyone knows” that vaccines can be contraindicated for patients with dysfunctional immune systems.” I did not blanketly say “that vaccines adversely affect the immune system. ” as you did. In case you can’t tell, these are very different statements. Yours implies causation, not mine.
Here’s a source you should know of for this: the CDC. http://www.cdc.gov/vaccinesafety/00_pdf/draft_agenda_recommendations_080404.pdf
I posted this above, see the sections on cytokines. Also see the goals and priorities on page 25:
goal: Guidelines for minimizing risk of VAEs in immunocompromised persons.
And you can find info specifically listing comprised immune systems on the package insert of nearly all vaccines as a contraindication (are you a medical doctor, UNCDoc?-just asking)
If you are going to argue, stick to the merits. Twisting someone’s words without a point makes you look like you have nothing to say (that’s worthwhile). It’s a cheap shot.
Storkdoc, I have read some of Chez’s work and agree with you. I was simply enjoying the irony on the similarities in treatment, from my perspective. I wish you and your child well. All I ever wanted was to illustrate the point that calling DAN docs quacks as a group is inappropriate as there is a great degree of difference in treatment. Unfortunately, parents have to sort out which docs to trust and as someone else noted, there are bad ones on each ‘side’.
One last thing, Sid Baker, the OBGyn you’re critiquing for yeast…my son has had multiple yeast rashes on his butt, once (the first time) after antibiotics and three times no where near any antibiotic use for months. There is something to this. I understand everyone has yeast and any culture should grow it out, but my son’s rear should not be growing it out!
Personally, I agree with the theory that the stress response could be causing digestive disturbances by impeding function of the parasymp side to such an extent that motility and pancreatic function is impaired leading to dysbiosis.
You can cast the yeast test results off as nothing, but I can tell you that my son and several other children I know have also have low stool pH, low levels of beneficial bacteria and low enzyme levels on stool test. Implementing a DAN docs advice helped my son’s stools return to normal, when other doctors wouldn’t or couldn’t address it.
To each his own, but I know that my DAN doc has helped my son– moreso, I believe, than the docs we otherwise have access to in my town and even state could have helped.
Kristina,
Favoring the COSAC report isn’t bias, it’s informed knowledge (smile); the organization has done a great job staying on top of issues for quite a few years and certainly shows great leadership.
Although I haven’t seen the Educating Children with Autism report being sufficient to influence policy (although given that it was its raison-etre) for best practices, it may have been necessary to at least lay out what they should be (although in a couple of years they should probably give it the once over for currency).
It would be nice to convene a similar panel to address the transition and adult services/support needs. I think that I could give up funding of another mouse study to have such a report composed.