“Open Questions” about Autism, and Vaccines, and Much More
In The “Open Question” on Vaccines and Autism, CBS News correspondent Sharyl Attkisson interviews Dr. Bernardine Healy, a former head of the National Institutes of Health and a member of the Institute of Medicine. Noting that Dr. Healy’s credentials “couldn’t be more ‘mainstream’”—no DAN! doctor she—Attkisson writes:
According to Healy, when she began researching autism and vaccines she found credible published, peer-reviewed scientific studies that support the idea of an association. That seemed to counter what many of her colleagues had been saying for years. She dug a little deeper and was surprised to find that the government has not embarked upon some of the most basic research that could help answer the question of a link.
The more she dug, she says, the more she came to believe the government and medical establishment were intentionally avoiding the question because they were afraid of the answer.
Why? Healy says some in the government make the mistake of treating vaccines as an all-or-nothing proposition. The argument goes something like this: everybody gets vaccinated at the same time with the same vaccines or nobody will get vaccinated and long-gone deadly diseases will re-emerge. (When I asked about cases of brain damage resulting in autism that have been quietly compensated by the government in vaccine court over the years, one government official recently told me that “it’s still better overall to get vaccinated than not to get vaccinated.”)
Healy says the argument need not be framed in those terms (vaccinate or don’t vaccinate). Instead, she says, we should vaccinate, but work to do it in the safest manner possible based on what we know and what we can find out.
Healy calls for a “personalized medicine” approach to vaccination, in which children would be screened so that we would know who might be “more susceptible to vaccine side effects”; such children would be vaccinated on a “more personalized schedule that is safer for them.”
This is not the first time that Dr. Healy has expressed concerns about the vaccine schedule and the “safety” of vaccines: Back in April, she wrote Fighting the Autism-Vaccine War in US News and World Report. According to Healy, the medical literature of 40 and 50 years ago is already “replete with reports of neurological reactions to vaccines, such as mood changes, seizures, brain inflammation, and swelling” and it is thanks to the efforts of “doctors, researchers, and yes, families,” that “sacred medical dogma” (including the “universal vaccine strategy”) is being challenged.
Attkisson writes that “the government continues to frame the conversation in all-or-nothing, ‘one-size-fits-all’ terms”: It seems that, just as autistic children have IEPs or “individualized education plans,” so is there a desire among some for children to have “individualized vaccine schedules.” Attkisson notes that parents of autistic children have told her that they want children to be vaccinated in the “safest manner possible.” It’s a little hard for anyone to disagree with such a statement. Nonetheless, Attkisson (in this particular CBS news piece) refers to the parents she has talked to as if they stand for the opinion of all parents of autistic children, and they do not. This is a presumption that Attkisson has made made before. As I’ve written, my husband Jim and I do not believe that vaccinations caused our son to be autistic and we’re not alone in believing this.
I’ve also noted before that it is unfortunate that so much energy is exerted in discussing the hypothesis that vaccines might be linked to autism and to “vaccine safety,” especially when issues such as employment and housing for autistic adults are real and pressing. Attkisson does refer briefly to the latter towards the end of her article:
………..look down the road a little. Millions of autistic children will - in the not-too-distant future - outgrow their parents, or their parents will no longer be able to care for them. Their only option in many cases is institutionalization. Who, but a parent or family member, can and would devote the moment-by-moment attention it takes to raise an autistic child? Our nation has not, to my knowledge, begun to build these institutions, or figure out how to pay for them.
“Their only option in many cases is institutionalization?”
Well, it is an option for some individuals. But it would be good for Attkisson to note efforts to find housing in the community, in group homes and supporting living environments, for autistic adults. (A film called The Key of G and the Friends of Children with Special Needs Dream Center in Fremont, California, are two places to start learning about such options.)
“Who, but a parent or family member, can and would devote the moment-by-moment attention it takes to raise an autistic child?”
Indeed, yes—-some autistic children and, yes, adults, require constant, one-on-one care and there are some things that only parents and family members will do on a 24/7 basis. But there are many individuals out there who want to be teachers, therapists, job coaches, and more for autistic children and adults, and who choose this work over other options. My son is turning 11 this week and, ever since he was diagnosed just around his second birthday in 1999, there have been numerous, numerous–the proverbial armada—therapists and teachers (mostly college-age, some older; most women, more and more men) who have spent hours with him and who have done possible thing to help him.
Just today I spoke about working in an autism school to a young woman at my college. And just today, a former therapist’s husband sent me an email announcing the birth of their first child: I told Charlie and he went through the list of his therapists’ names, adding the word “baby” after each (I had to correct him in a couple of instances).
It will be interesting to see how the latest chapter in the epic that the “vaccine court” has become will play out. Expect to hear words like “facts” and “truth” and “proof” and “evidence” frequently used in reference to claims of an autism-vaccine link. And since we’re talking about “facts” and “truth,” let’s hope that the truth about life with autism can be represented in its full light. Yes, it’s not easy; yes, families struggle, autistic children have lots of challenges and life can be pretty tough some times. But autism is not some death sentence, under which a child is going to live out her or his days in an institution that no one wants to pay for: Life with autism is itself an “open question,” a story whose end we don’t know, as each individual is writing it—living it out—in his and her own, unique way.
And those are the stories that I’m most interested in hearing about.
Tags: adults, asd, asperger, autism, autism blog, cbs supported living, disabilities blog, employment, Epidemic, Family, family blog, jobs, Parenting, pdd-nos, Vaccines
24 opinions for “Open Questions” about Autism, and Vaccines, and Much More
Robin H. Morris
May 13, 2008 at 10:54 am
Eloquently stated Kristina! I plan to share your thoughts on my blog. My caveat for all of the research is that awareness be stressed. It is the public recognition of autism that will propel law to create housing (not institutions!) and jobs and viable opportunities for our children.
Regards,
Robin
RAJ
May 13, 2008 at 11:49 am
Healy is correct in her cautionary beliefs. Genetic anomalies have been associated with susceptabilty to adverse reactions to vaccines. Variances located in chromosome 11 and 2 have been mapped to adverse reaction to smallpox vaccine in adult human beings.
http://www.sciencedaily.com/releases/2007/06/070613114124.htm
It will be decades before individualized genome profiles can identify which individuals are at increased risk for an adverse reaction to a specific vaccine or combination of vaccines… or any of the other nironmental pathogens suspected of a link. Until then the debate is not closed and will continue.
liquid zeolite
May 13, 2008 at 12:33 pm
Common sense would suggest caution, however, since when has the government or big drug companies used common sense to deal with any issue? It seems as if though money is the chief motivation 99% of the time, not public health.
Cliff
May 13, 2008 at 1:25 pm
Given the decades it would take to find out each genome profile (which would just as be, by its very nature, as much a goose chase in respect to the fact that any substance that has had an effect on a specific profile would then become a candidate for anything and everything, and that’s being generous and throwing it in based on assuming only those that have been currently found to have an effect on a certain profile would be likely to have an effect elsewhere. Taking that out (and, honestly, it is one heck of an assumption), we’re back at everything and anything), it’s probably better to look at correlation studies. The correlation studies based on the populations, as far as I can tell, have similarly tended toward the few that they aren’t the cause, so I’m still not as inclined to necessarily find vaccines to be a source of more reasonable, specific concern.
Cliff
Regan
May 13, 2008 at 1:57 pm
Dr. Healy has publicly expressed some negative sentiment about EBM and opinion about individualization in many medical arenas beyond vaccines (mental health and psychiatric medicine, for example), so this seems a pace with that. She, interestingly enough, also criticized the government for not having enough flu vaccine on store a few years back, commented on the possible need for an HN51 vaccine, and the use of genetic engineering vs. egg based vaccine technology, so it’s unclear whether it’s the clarion call to “no vaccines” as some might choose to see it.
The one thing that is hinted at, but not stated plainly from all the “research” “dug up” is which studies Dr. Healy refers to and what time frame. If it was during her tenure at the NIH, then surely she could have taken some action, since she was at the helm during the business with the AIDS vaccine; if it is now, then perhaps she could write a review and publish it in JAMA or NEJM or Pediatrics or one of the major public health journals and let everyone else in on what she has found. Otherwise it’s a little like, “I know something that you don’t”. And I don’t mean that to discount what she might have found, only that it’s not clear what it is or any specifics therein. Is there such an article at this time?
Emily
May 13, 2008 at 5:40 pm
Well observed, Regan. I was having the same questions. What are the studies? What are the concerns? Can we get a nice paper please?
Kristina Chew, PhD
May 13, 2008 at 5:44 pm
One of the articles (maybe just the AP one) I read about the case referred to the defendants’ lawyer as saying that a number of studies would be cited.
Here’s Gardiner Harris in the New York Times:
Cliff
May 13, 2008 at 6:01 pm
I vaguely remember that studies would be cited. If I were to take a guess, I bet that what’s going to be attempted is an argument where they tie vaccines to a specific injury to a specific genome, say that a specific genome yet unexplored may be the cause (since it hasn’t been explored yet is plausible), and essentially hope that’s considered within the realm of the legal standard. I would hope it wouldn’t be, but you never know.
What I’m pretty sure it’s not is a totally new study. It would have already been reviewed and published, and I would have gotten an earful of it ever since it came out. Considering I haven’t, I think that’s the case.
Cliff
Laura
May 14, 2008 at 8:52 am
The thing I don’t understand is that the CDC has science and research on its side. The overwhelming research indicates there’s no link. So why would the govt shy away from the inquiry?
I have to disagree that that examining the link is a waste of resources. Public trust in the CDC has eroded. And if CDC has to pay respect to the potential link in order to garner public trust, it should do so.
Bush put industry anti-regulators in charge of each of the bureaucratic agencies, and the results have been disastrous. We’ve got lead in our toys (no regulatory oversight at CPC), mercury in our tuna (thanks to the tuna lobby) and no one has any faith in CDC (thanks to big pharma). (And those are just a examples of the corrosive effect of the influence of industry money; it was no wonder that California incurred blackouts in 2000 and 2001 when a former Enron exec was running FERC .) We need to eliminate the influence of special interests and greater transparency in the government on all levels. After all, CDC has science on its side so it should have nothing to hide. Only then will public trust be restored.
Cliff
May 14, 2008 at 9:06 am
“The thing I don’t understand is that the CDC has science and research on its side. The overwhelming research indicates there’s no link. So why would the govt shy away from the inquiry?”
Quite honestly, they haven’t. And that’s the thing, is that no matter how many studies are put out there, it doesn’t matter, because an anti-vaccination theorist is going to put out another theoretical where they otherwise wouldn’t have existed, and then say that because that question hasn’t been explored that the government hasn’t done enough. It gives a great air of having done nothing, even thoguh there have been more studies about the subject than would ever have been expected without the coverage. The CDC’s actions aren’t going to matter, because this is essentially a game of media representation, and by (heavily) playing the victim/maligned force that banks on distrust of authority, anti-vaccination advocates will always have an edge. It doesn’t help, of course, that the CDC hasn’t exactly engaged in those terms, and has kind of hoped that the evidence can be considered without all of that publicity and emotional context (yeah, right!).
Of course, the organization has obvious faults (that, as you most poignantly noted, stem from the Bush administration). But to some degree the issue of transparency is a construct in so far as where the blame is placed; its not as if government forces are the only ones responsible. People tend to advocate, with a lot of force, the reduction of government spending and the like, and when that kind of thing happens, the ability to do such regulation and proper management simply disappears, no problem. It’s not that certain interests aren’t involved, but there are a lot of reasons that those interests are involved, and they aren’t as singular as one would be lead to believe.
Now, I would hope that the CDC finds a more effective way of restoring public trust. It’s going to be a very uphill battle, though, and I suspect that a lot of people (some of whom probably don’t, by any means, deserve it) are going to take the fall for the negative publicitity. Things might get better from there. Who knows, though?
Cliff
Kristina Chew, PhD
May 14, 2008 at 10:11 am
From what has been on Days 1 and 2 so far, the two children whose case is being considered have “clearly regressive autism,” which is said to be a sub-group of “regressive autism” (itself a sub-group of autism)—-see Left Brain/Right Brain. One of the Petitioners’ expert witnesses is Dr. Sander Greenland of UCLA, according to wom
Kev also notes that Dr. Greenland is “not claiming that all ‘clearly regressive autism’ cases are caused by [thimerosal]. He’s saying that this is the numerical size of the group Petitioners claim contain those injured by vaccines, resulting in autism.”
And that “‘clearly regressive autism’ (aka autism-caused-by-thiomersal) population” may be as small as 0.015%.
Laura
May 14, 2008 at 10:31 am
Cliff,
The Kennedy report makes a compelling case for corruption in the CDC (link: http://www.rollingstone.com/politics/story/7395411/deadly_immunity/ ). See also: EPA mercury regulation is crafted by pro-industry lobbyists: (link: http://dir.salon.com/story/opinion/feature/2004/04/01/grist31/ ). See also: Bush Administration Accused of Putting Ideaology Above Science (link: http://www.terradaily.com/reports/Bush_Administration_Accused_Of_Putting_Ideology_Above_Science_999.html )
It’s no wonder people are seeing black helicopters.
HCN
May 14, 2008 at 11:12 am
Laura said “The Kennedy report makes a compelling case for corruption in the CDC ”
No it doesn’t. Especially when the Salon article had to be corrected several times for the errors RFK, jr had:
http://skeptico.blogs.com/skeptico/2005/06/robert_f_kenned.html
Kristina Chew, PhD
May 14, 2008 at 12:06 pm
just like in Goodfellas…..?…..meaning the helicopters.
Cliff
May 14, 2008 at 12:23 pm
As HCN notes, the Kennedy report had its issues. But I wasn’t saying that there isn’t, I’m saying that essentially that aspect isn’t casual to the problems, the casual problems run deeper into voting habits and expectations that Americans generally have of reducing taxes. Want to lower regulation costs? Have somebody else who knows about the subject figure it out, with disastrous results. And people aren’t even all behind advocating for science (see: intelligent design debate).
Cliff
Liz P
May 14, 2008 at 1:38 pm
Let’s face it, since our local, state, and federal governments want no part of the responsibility to educate, feed, or house a very large percentage of our children with autism; if programs do not change, many future adults with severe autism will be left beggared on the streets.
Nationwide, programs, that provide medical, therapeutic, social, employment, and housing care for developmentally disabled individuals, are serving less than 1/3 of the population in need of services; the rest lanquish on waiting lists that never actually progress. Since many children with “severe” autism are being left behind now, they will faill to develop many of the essential skills required to function in the “mainstream” world.
As an older parent (note, age is NOT a factor in this child’s disability, her mother was 20 and father 19) providing 24×7x365 care, without any nest egg (or even a small parachute), the odds are good I will not be around for much of her adult life; when I am gone, if she is unable to care for herself, what will happen?
It is all well and good to pay lipservice to the fact she will be unique and “herself,” but where is the value in being severely imapired and unable to care for oneself?
And how, does providing therapy and interventions which enable my daughter to communicate, bathe, potty, feed herself, write, read, do math, and understand the workings of many things in the world, somehow, change the essence of “herself,” her uniqueness?
It is all fine and well to shout “just let them be who they are,” but the reality is, if our parents did this, we would not be who WE are.
Education and nurturing provide the means to an end - independence. In our brave new world of war and profit, our schools and public programs have been given the short shrift; and our children with severe disabilities are paying the price. Those families with the comfort of wealth and/or extended family can afford to be cavilier; the rest of us, American paupers, live in perpetual terror. When our work-a-day lives cease, our severely disabled children will be left homeless, penniless, and defenseless.
I see every effort we make to help my daughter feel better physically, function better mentally, feel emotionally validated through effective communication, and overall “catch-up” to her age-peers across the board, as another arrow in her quiver which she can now utilize to better engage the world on her own terms.
Isn’t our job as parents to provide these tools? Provision of the raw materials for her tools (therapies, supplements, physician fees, and tuition), just for the last four years cost about $400,000.00. The human toll on her parents and siblings cannot be calculated; but I have devoted at least 14,600 hours, in the same four year period, to just meeting her autism-related needs. Thanks to God for my now extinct retirement account and parents (may they rest in peace knowing their estates helped make their granddaughter whole). On the bright side, her quiver is filling nicely, as a result.
So, if families cry out that they need services and their children need therapy and no agency holds out a helping hand, either the child remains severely disabled or the parent must pursue other avenues. Some children may have had the misfortune of being born with a lifelong disability; many were disabled by careless purveyors of “medicine.”
For those suffering from medically-induced disbability, financial compensation can help offset the expense of care and recovery efforts. Of course, the “vaccine court” $1,000,000.00 capped settlement won’t go very far; and they disburse it as an annuity, and dictate where and how you can spend it, but in terms of lives like ours, something is much better than nothing.
Cliff
May 14, 2008 at 2:00 pm
“Let’s face it, since our local, state, and federal governments want no part of the responsibility to educate, feed, or house a very large percentage of our children with autism; if programs do not change, many future adults with severe autism will be left beggared on the streets.”
I don’t think the skepticism is quite true, having been there. I mean, where I have worked, people are absolutely interested in doing everything they can (and, often, have worked harder than can be expected for such “health care issues” normally). The issue is that, quite honestly, often they can’t. It’s compounded into the issues of a larger, social picture.
“As an older parent (note, age is NOT a factor in this child’s disability, her mother was 20 and father 19) providing 24×7×365 care, without any nest egg (or even a small parachute), the odds are good I will not be around for much of her adult life; when I am gone, if she is unable to care for herself, what will happen?”
It’s a very real question with not a lot of very real answers as of yet. It’s important to of course keep pushing the issue with those who have some power to help such things, but it is hard sometimes to alter the reality of the situation as a whole.
“It is all well and good to pay lipservice to the fact she will be unique and “herself,” but where is the value in being severely imapired and unable to care for oneself?
And how, does providing therapy and interventions which enable my daughter to communicate, bathe, potty, feed herself, write, read, do math, and understand the workings of many things in the world, somehow, change the essence of “herself,” her uniqueness?
It is all fine and well to shout “just let them be who they are,” but the reality is, if our parents did this, we would not be who WE are. ”
I don’t think anyone here is going to deny the importance of making sure that autistic individuals have a secure environment and are given as many skills as possible. Now, the flip side of the argument is innane, too; if we were to have a completely normal population, much of the very developments we’re talking about simply wouldn’t exist and, surprise surprise, a lot of those who bring about such changes have autistic traits, since they can promote such values necessarily. So while I agree with the sentiment that giving individuals skills where otherwise such skills is of utmost important, it’s not necessarily so that it invalidates autistic existence.
“Education and nurturing provide the means to an end - independence. In our brave new world of war and profit, our schools and public programs have been given the short shrift; and our children with severe disabilities are paying the price. Those families with the comfort of wealth and/or extended family can afford to be cavilier; the rest of us, American paupers, live in perpetual terror. When our work-a-day lives cease, our severely disabled children will be left homeless, penniless, and defenseless.”
Yes and no. What such nurturing usually does is give someone the tools to deal within a system so that they can be dependent within that system. You will find virtually no one in today’s world who is independent. It’s a simple statement of fact.
But, again, the tools within working within a communicational system where such dependencies are expected is important, and where those skills are more difficult to come it is important to work towards giving those skills. I’m not in disagreement there.
“I see every effort we make to help my daughter feel better physically, function better mentally, feel emotionally validated through effective communication, and overall “catch-up” to her age-peers across the board, as another arrow in her quiver which she can now utilize to better engage the world on her own terms.
Isn’t our job as parents to provide these tools? Provision of the raw materials for her tools (therapies, supplements, physician fees, and tuition), just for the last four years cost about $400,000.00. The human toll on her parents and siblings cannot be calculated; but I have devoted at least 14,600 hours, in the same four year period, to just meeting her autism-related needs. Thanks to God for my now extinct retirement account and parents (may they rest in peace knowing their estates helped make their granddaughter whole). On the bright side, her quiver is filling nicely, as a result.”
I don’t disagree with the sentiment as to enabling her within such systems, whatsoever. And the cost of such education is important to ameliorate for a lot of reasons. By “human cost”, though, are you referring to lack of materials as diverted to her educational needs, to the time involved in such a process, the stigma of association, or some combination therein?
“So, if families cry out that they need services and their children need therapy and no agency holds out a helping hand, either the child remains severely disabled or the parent must pursue other avenues. Some children may have had the misfortune of being born with a lifelong disability; many were disabled by careless purveyors of “medicine.”
For those suffering from medically-induced disbability, financial compensation can help offset the expense of care and recovery efforts. Of course, the “vaccine court” $1,000,000.00 capped settlement won’t go very far; and they disburse it as an annuity, and dictate where and how you can spend it, but in terms of lives like ours, something is much better than nothing.”
I think you’re begging the question here, though. We don’t actually know what causes autism in any situation, and that’s still very much up in the air. And we have to be careful as to what we do. If we rashly decide, based on non-existent evidence, that vaccines are the cause and take away all vaccines, we’d likely just have the same number of autistic individuals with no means to educate them and a bunch of newly dying people and some extra million dollars to spread. Not the best situation, truth be told. It’s probably best to address the situation, as you have, as some of the needs in putting autistic individuals within a societally-singular situation where there is support and a very solid structure of idea sharing and communication.
Do you get my drift here? I think you’re creating a bit of a distinction between your point of view and a perceived other where such a distinction really doesn’t exist. You have valid points and, outside of causation and a few other details here and there, there’s not much in contention in reality.
Cliff
Tony Bateson
May 23, 2008 at 6:50 am
Well I have to say I wrote on the absence of autism in the unvaccinated population here in the UK and this has gone down like a lead balloon in this autism blog. Where are the unvaccinated autistics? I thought I would hear from a few parents that their child was unvaccinated but not a single one! What does that tell you?
Of course governments won’t look at this and most of the research reports I have taken apart page by page aren’t worth the paper they are written on.
In the UK there is the famous North Thames study of 1998 by Brent Taylor. I bet my bottom dollar that the 498 kids in that survey are all vaccinated. Dr Taylor, however, won’t release the papers. Is that because he works for the UK Government?
And by the way to those people who say they can’t understand all the ‘energy wasted on the vaccines/autism question’ can I say first of all that this is not mutually exclusive to other concerns, I have worked for many years on developing bricks and mortar projects. But most importantly the vaccine/autism issue carries the cause hidden within its folds. More kids could be helped properly if this was known.
It’s the USA’s mandatory vaccination policy that has effectively blanked out the possibility of differential analysis by medics otherwise if vaccines are implicated this would never have escaped detection in the US the way it seems to have in the UK.
Tony Bateson
Laura Smith
Jun 12, 2008 at 1:46 am
Why does some childen are very loving and others mean?
m
Jun 12, 2008 at 5:16 am
@Tony Bateson
even Generation Rescue’s infamous telephone survey had result that 3% (i.e. 3 out of 100) of unvaccinated children were autistic.
Tony Bateson
Jun 12, 2008 at 7:05 am
This blog isn’t working is it?
Where are the thousands of parents who should be protesting but ‘our autistic child was never vaccinated’? Isn’t this subject of any interest? Do writers simply want to argue the toss about enormously complex genome science? It’s not science! It’s arithmetic! Where are the unvaccinated autistic kids?
Tony Bateson
Tony Bateson
Jun 12, 2008 at 10:38 am
I wasn’t aware that Generation Rescue’s figures suggested that 97% of autistic children are vaccinated. I can’t speak for the US but if that figure were reflected in the UK that would mean some 16,000 autistic children were unvaccinated.
Furthermore those figures would hard to explain in a country such as the UK where perhaps only 80% of children had had childhood vaccines.
There is no prospect whatsoever of the 3% figure being reliable in the UK. But if it were it would strongly suggest that those autistic kids should become the focus of key research. Vaccine materials enter the infants system via other means than childhood vaccines.
One of the tiny number of unvaccinated autistic children in the UK is believed by one of the parents to be due to the child’s mother’s dental amalgam treatment in the early weeks of pregnancy.
US researchers might look at low vaccine take up locations such as Nevada County, California to see whether Generation Rescue’s figures repeated there. Quite apart from Amish and Homefirst populations.
Tony Bateson
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