5.21.2010

What Are You Thinking? Part 2: On Autism & Vaccines

I am pulling and expanding this from a comment I left on my What Are You Thinking? post, about the necessity of skepticism over belief with autism parenting choices.

When it comes to autism and vaccines, you need to know what both sides are saying, but that doesn't mean they deserve equal weight. Again, it's about belief vs. research. Akin to Intelligent Design vs. Evolution (the NOVA episode Intelligent Design on Trial is worth your time).

Consider the perspective of Alison Singer, science advocate, formerly of Autism Speaks, currently of the Autism Science Foundation. When she speaks on autism and vaccinations, on why parents make scientifically unsubstantiated choices, she does so with diplomacy and compassion:
SR: Why do you think scientifically refuted claims of autism causes (vaccinations) and cures (chelation, etc.) find such a wide audience?
AS: I think it’s because parents love their children so much. It’s very hard to accept that your child is going to struggle and have these tremendous challenges. It’s natural to want to blame someone or something. Believe me, I've been there. But parents need to look at the data. You can't be so focused on anger that you lose sight of what the science is saying because that's really not in the best interest of the kids. I would encourage parents to look at the science and make decisions based on the science. And the science is clear in the case of vaccines and autism. Vaccines don’t cause autism. I think families were right to ask that the vaccine studies  be done in the late '90s and the early part of this decade, but our public health community really responded to that. And we now have dozens of studies looking at vaccines and vaccine components, all of which have yielded the same answer that, no, vaccines do not cause autism. I think we owe it to our families, we owe it to people with autism, to fund studies that are likely to yield new information. If you keep asking the same question, you're going to get the same answer. We have to ask new questions and try to find out what really is causing autism.
For contrast, when antivaccinationist J.B. Handley of Age of Autism talks about Ms. Singer's perspectives on parents making scientifically refuted choices, he does so with rage and contempt, e.g., today's post: Alison Singer Mispeaks at Yale: Flaming Moron or a Flaming Liar? Excerpt:
"...Ms. Singer explained how many of us delusional parents have no training in the scientific method. With our tiny minds, we just don’t understand the science that’s being done around us to help our kids by the big guy, the benevolent public health system. With her snide tone and rolling eyes, we’re all supposed to understand that Ms. Singer is on the other side of this contrast: she gets it. The science. It’s the Autism SCIENCE Foundation, after all. Poor desperate parents with their teeny little minds, they are so gullible. And stupid."
I cannot take people who froth and rage and point fiery fingers seriously, not when it comes to science, not when it comes to research, not when it comes to making decisions that affect children's welfare. While it sometimes seems that we autism parents are running on naught but passion, we also need to remain clearheaded about the choices we are making, and why we are making them.

There are children who have legitimate reactions to vaccines - but those reactions are rare. No science supports an autism/vaccine link, though a lot of science refutes it. I think a lot of parents - not all - become aware of their children's autism traits around the same time those kids get the big vaccinations. And since those parents then want answers about causation that scientists can't yet give them, they are vulnerable to angry people who claim they do have autism answers (see my BlogHer piece from last year: Identifying and Avoiding Autism Cults).

There is a lot of vehement misinformation out there, and you need to be able to parse it without falling into the emotional traps that believers like J.B. Handley lay so expertly. Be wary. Be smart. Be your child's champion.

Update: Turns out Emily was blogging along similar lines yesterday and today, with different examples and in tapestry-like detail (if you don't follow her, you should):
Update #2: A reminder that it is the sensation-seeking media which perpetuates antivaccinationist viewpoints as "legitimate" and gives willful misinformationists like Dr. Andrew Wakefield heavyweight status, whereas an objective analysis gets Dr. Wakefield laughed out of the ring before the first bell.

49 comments:

  1. Yes. Just, yes. Thank you for being voice of reason, but for also doing so respectfully.

    ReplyDelete
  2. Very well said and perfectly illustrated by quoting both of them.

    ReplyDelete
  3. I remember when Ms. Singer stepped down from heading up Autism Speaks last year because of her beliefs on the lack of evidence linking vaccines to autism. I thought it got VERY limited press coverage!

    ReplyDelete
  4. The more some people are attacked the nastier they become. if they really had any scientific basis for their beliefs they wuldn't need to resort to ad hominem attacks. Its that way in every walk of life.

    Truthfully I think that the vaccie-causation crowd though have a totally different reason fro linkage. If their children's autism wasn't cause by vaccines and it is genetic somehow then it is their fault, albiet, unwittingly that their children have this disability. There is a huge amount of parental guilt involved here and I think that is why so many are so visciously adamant. Apart from the charlatans whose livelihood preys on desperate parents.

    ReplyDelete
  5. JB Handley's use of the epithet "moron" shows how disconnected he really is from the disability community. Yeah, use an old term for severe mental retardation as an insult.

    He appears upset that Ms. Singer doesn't know all the details of the Wakefield saga.

    Mr. Handley should get used to it. There is no reason to know about Dr. Wakefield anymore, except for how to avoid him and his followers.

    ReplyDelete
  6. I've grown to dislike writing about personalities whose names and viewpoints do not - as Sullivan mentioned - merit thinking persons' attention. Too close to Elise's ad hominem.

    But new autism families, and hoodwinked autism families, need concrete examples of who to trust and why, and this matter is best illustrated, as per Sarah, in key figures' own words.

    ReplyDelete
  7. More good reading over at Respectful Insolence about tomorrow's TODAY show interview of Wakefield, including the address of the TODAY show in the comments, if anyone's interested in emailing them. I have.

    http://scienceblogs.com/insolence/2010/05/here_we_go_again_matt_lauer_to_interview.php

    ReplyDelete
  8. ...for some reason Emily neglected to cite her own, truly excellent roundup regarding the Global Conspiracy against Wakefield:

    http://daisymayfattypants.blogspot.com/2010/05/mapping-conspiracy-against-wakefield.html

    ReplyDelete
  9. Christine10:30 AM

    Thanks for your levelheaded post. As the new parent contributor for the Shot of Prevention blog, I have asked people to join me on a journey to learn about vaccines and the issues that pertain to their safety and effectiveness. It didn't take long for me to discover that there are a great deal of emotions raging behing the vaccine/autism debate. It is refreshing to read your post and find that not every parent who faces the challenge of a child with autism is convinced by Wakefield's study. Your blog proves that there is so much that can be accomplished when we all focus on factual information and restrain from speculation and verbal attacks. Thank you! Christine from shotofprevention.com

    ReplyDelete
  10. I happened to live in Austin when my denial could not continue to deny my son was having an issue that was not resolving... I basically walked from an appointment with a mainstream pediatrician who told me my son was on the spectrum and would never go to regular school and not to waste time and money on GFCF straight into the nascent Thoughtful House. The doctor at TH told me my son's bowels were impacted and got us started on 'the diet' - and four months later I took my son back to my astonished pediatrician who demanded to know "what did you do to this child??"

    My pediatrician became convinced and went straight into emergency pediatrics, I believe so he wouldn't have to give more vaccinations.

    My son reacted to his vaccines, and he had bowel disease. Clear up the bowel disease, and away went his autistic symptoms.

    There are valid reasons Dr. Wakefield has loyal followers. Had it not been for Dr. Wakefield and Thoughtful House, my son would now be autistic and he is definitely not autistic.

    Best wishes for all your children.

    ReplyDelete
  11. Anonymous7:30 PM

    Why do you embrace autism? I have spent he last 1.5 years chelating my child (mild to moderate ASD) who is now...normal.

    Of course I worked butt of to make it happen--no fancy blog, but I have my CHILD.

    ReplyDelete
  12. TallBlonde1, I am glad your child's digestive issues are so much better.

    Children with autism may have digestive issues, but that doesn't mean those issues caused the autism. As for autism/behavioral symptoms improving after treatment -- whose behavior wouldn't improve if they no longer felt awful?

    The latest research on GFCF diets and children with autism but without celiac (you didn't mention the nature of your child's digestive troubles) has determined that the GFCF diet doesn't help and may in fact be harmful:

    http://leftbrainrightbrain.co.uk/2010/05/gfcf-of-no-benefit/

    ReplyDelete
  13. Anonymous, thanks for your assumptions, bad spelling, and unsubstantiated and therefore useless anecdote.

    ReplyDelete
  14. interestingly, some parents still hear that GI issues are simply "part of" autism. Isn't that awful? GI doctors who won't treat GI symptoms of autistic children?? they exist, believe it...

    My son didn't/doesn't have celiac. And, he was doing much better after merely 4 months, for many children it may take much longer because it takes a bit, as I understand it, for gluten to leave the system.

    I looked briefly at the study you sited. I didn't understand what lead you to assert GFCF could be dangerous. And, in any event, the study you mentioned was not statistically significant. Moreover, it was only for 18 weeks, and challenges were done within that time? I don't see what good science supported that experimental design, unless the motive was to show that GFCF didn't work by setting up a study that would not be favorable. Unfortunately, it happens.

    We started with GFCF and supplementation. Eventually we did IV chelation (DMPS) because porphyrin data indicated mercury toxicity. I wish I had not waited so long, the results were dramatic and my son WANTED to go get those IVs, he said they made him feel better.

    I have a technical background, so of course I took all the vaccines for my son because I wrongfully believed them to be supported by scientific data. I have since learned that was never the case.

    My son was first injured by HepB - significantly losing the ability to nurse after that shot on the first day of life. Had I been a first time mom, I would not have known that.. but I had barely weaned an older child and I know my son lost his ability to nurse following hepb.

    Being slow on the uptake I continued to vaccinate until I realized delays, continuing even after serious 24 hour continual screaming after his 12 month shots.

    Once I stopped vaccinating him, my always sick son was very rarely sick any more.

    Apparently my children are harmed by vaccines, we won't be getting any more.

    I will be forever grateful to Thoughtful House and Dr. Wakefield.

    May all vaccine injured children find the healing my son has experienced.

    ReplyDelete
  15. TallBlonde1,

    Your testimonial is a yet another example of what I'm cautioning parents against: an emotional trap, a passionate series of anecdotes referring to but not actually addressing or in fact dismissing (a.k.a. "looking briefly" at) the points which have been raised.

    I am glad your child is feeling well. He may well be sensitive to vaccines - it's rare but possible. Everything else you've asserted is belief- rather than evidence-based.

    ReplyDelete
  16. Watching Lost recap - noting the Belief vs. Science exchanges between Locke & Shepard - beware the smoke monsters!

    ReplyDelete
  17. It's quite convenient to continually dismiss vaccine-injured children as "rare anecdotes" - but that excuse is growing a bit thin as increasingly all of us know personally these children. How long will the powers that be continue to deny studying these children so that they may continue to remain mere anecdotes?

    And, why should I, or anyone else for that matter - believe 'science' that is wholly inconsistent with what I can myself recognize as truth? Does the term "gaslighting" mean anything to anyone?

    All the vaccines have not been studied as they are administered, together and with adjuvants. How can anyone prove that fully vaccinating a child is safe? The science just isn't there.

    Do what you will, just don't presume to be correct in your judgment such that another parent acting oppositely in their judgment is wrong. Some of us have actual skill in the art of experiments, experimental design, and statistics and we can recognize vaccine safety is not proven - through analysis of not only anecdotal evidence but also scientific data.

    ReplyDelete
  18. Anonymous5:13 AM

    tallblonde1-don't waste your time. Parents like this are truly bitter, jealous and are too lazy and arrogant to do much for their child. She will have to live her entire life with a severe, huge autistic child. Move on and find people who do get it.

    ReplyDelete
  19. My son is a sweet, happy kid, surrounded by people and family who love him and support him. Not sure how that translates to "bitter." But then again I don't speak "Anonymous."

    Tallblonde1, people can read your story and decide for themselves. That's the point of this entire thread. Good luck with your child.

    ReplyDelete
  20. Peggy8:06 AM

    To those who still think those of use who do not chelate/GFCF/etc do not care about our kids:

    We did GFCF for two solid years. No change. We have been tested - no celiac.

    My sons did not have any regression due to vaccines - they were vaccinated on a delayed, single shot schedule. Their traits were there from birth - I have the video. I can see it.

    My family tree is full of people with autistic traits. Tracing back to pre Civil War era.

    We have our children - they are happy and healthy and will be productive members of society. They do receive OT and ST and anything else that will benefit them. I am their mother - I know what does and does not work for my kids.

    If it worked for you great - but don't presume to tell me that I am not doing enough for my children because my battles are not your battles. My children are individuals just like yours are and as such the idea that a 'one size fits all cure' is ridiculous and not logical.

    Squid, cause it can't be said enough - you rock! I love reading your blog and watching Leo learn and grow. Thanks for putting it out there.

    ReplyDelete
  21. Anonymous10:51 AM

    The irony of using my words in your post is that you failed to explain why I called Alison singer a moron.

    She annihilated the truth about what Wakefield actually studied in 1998, while inferring that she belonged to the group of people who understand science, much as you have done here.

    Jb handily

    ReplyDelete
  22. Thanks for the support, Peggy!

    Readers, please do look more than "briefly" at my Identifying and Avoiding Autism Cults piece on BlogHer for the full backstory on why we're skeptical when it comes to alternative autism treatments, and why you should be too. It also contains tools for cultivating your critical thinking skills:

    http://www.blogher.com/identifying-and-avoiding-autism-cults

    ReplyDelete
  23. Instead of accusing anyone of not having critical thinking skills, why not delve more fully into the bogus GFCF study you set forth as proving either GFCF isn't useful, or that it can be harmful? I think I was also accused of not fully addressing a point before moving on to another, so lets talk about that study you suggested as determinative.

    Is more information about the study available? I think the raw data and more explanation about the proclaimed 'enough nutrients' ( or something similar ) would be helpful. Moreover, it would be helpful if the study designers had actually consulted with any of the many doctors who claim success through GFCF diets. Lets take a real thorough look at that study.

    I have never accused anyone of not doing enough for their kids because they didn't do what I did. I think it is offensive to suggest any parents are not doing what they think is best. Not everyone has the same capacity or training for critical thinking skills. Further, every child is different.

    Also, I do want to make note of the fact that GFCF was not all we did initially. We also simultaneiously implemented many supplements as well as the Feingold diet as well as eliminated what we perceived to be toxins from our home and food supply. We changed almost everything we previously did without thinking. Our choices became conscious.

    I was wholly rejecting of mainstream medical telling me that nothing could be done for my child. And, I was right to reject that notion!

    I am anxious to get my copy of Dr. Wakefield's book so I can learn fully both sides of this controversy. Certainly we cannot escape pHARMa's stance on the matter. http://www.truthofautism.com/

    Don't insult me because you don't agree with me. I haven't knowingly insulted anyone else.

    ReplyDelete
  24. Tallblonde1,

    Tools and information re: critical thinking skills are helpful for anyone seeking to evaluate all the information in this thread, including mine, including yours.

    ReplyDelete
  25. I suggested we discuss the study you provided in detail.

    Are you refusing to do that?

    ReplyDelete
  26. And give you more opportunities to spin/ignore everything I write/cite as suits your agenda and determination to have the last word? I think not.

    ReplyDelete
  27. I was anxious to discuss the science, let you demonstrate critical thinking skills with that particular experiment.

    Your refusal is telling. I spun nothing.

    ReplyDelete
  28. The GFCF study that Shannon cites is not the only one. There are plenty of others. I've compiled a short list here: http://daisymayfattypants.blogspot.com/2010/05/this-ones-about-science.html . I don't care if people use this diet. I think it's great if parents find things that work for their child or yield improvement. But the data don't indicate that the GI problems are autism specific. All kinds of children have them, and they should be treated with the gold-standard GI approaches. That includes addressing diet and potential allergies.

    As for Dr. Wakefield, I'll just leave these facts (and they are facts) for digestion: His only two relevant papers have been retracted (one before publication), and 10 of the 13 authors on the first paper withdrew their authorship even before the retraction. He's been found guilty of ethics violations in his home country and removed from the medical register, unable to practice medicine any longer there. His hypotheses have changed with time. He developed a vaccine himself. He failed to declare relevant and significant conflicts of interest. The clinical descriptions of the "consecutive" cases in the Lancet paper were altered. A legion of studies has failed to support his various hypotheses (I've helpfully provided some of that legion here: http://daisymayfattypants.blogspot.com/2010/05/mapping-conspiracy-against-wakefield.html), including a quite recent paper in Pediatrics (written up here: http://daisymayfattypants.blogspot.com/2010/05/adding-to-anti-wakefield-conspiracy.html). At least two parents in the original, retracted study in The Lancet have expressed regret at ever having had anything to do with him.

    He may be wonderful in person--I get the impression that he is. You may equate improvement in your child's health with his actions (although I've come to believe that the nutritionists at Thoughtful House may well be the only ones engaging in useful practice). You have anecdotes to relate that cast him in a beatific light. That doesn't add up to data, and it still does not exonerate Wakefield from his string of demonstrated ethic violations. If he had "his side of the story" to tell, why did he not tell it when it mattered most, before the very body that was considering "the story" and could deprive him of his license?

    It's any parent's right to hitch their wagon to whomever and hope that the hitch holds. I do not have a problem--why would I?--with dedicated, loving parents who seek information and do their best by their children. I do have a problem with alleged scientists who know what they're doing is wrong yet continue to do it.
    (continued)

    ReplyDelete
  29. (continued)
    I also have a problem with people who are incapable of any kind of civil disagreement and who feel compelled to turn on the person who doesn't agree with them in lockstep and hurl epithets at them. I hope that in doing so, it somehow made the posters who engaged in it feel better--about themselves or their decisions. It in no way makes what they say about the other person true.

    By the way, your anecdote is not my anecdote, and you can't use it to demonstrate the rightness of your stance any more than I can use my anecdote to do the same thing. That's why anecdotes are pointless. Bring the data...or just tell your story without judgment. Or, as would be best and most useful and community building, do both. We can all cite exceptions to what science or medicine dictates or thinks is true, or exceptions to the efficacy of their gold-standard practices. That doesn't make them wholly wrong or us completely right. But sharing our stories can be one of two things: building or breaking. It's up to the sharer to determine which they'd like to target.

    Shannon...as you know, I've been reading your blogs for a long time, and among the things that I respect about you the most are your open-mindedness, your always fresh perspective on issues at hand, your honesty, and your fairness. I will now add to that, in a defensive move, that you also are one of the most life-embracing but realistic people I know, and I know that your son is a happy, best-loved child whose parents do right by him. Bitter? That word may be a fit in some quarters, but it doesn't belong anywhere near your home or your heart.

    ReplyDelete
  30. Let's discuss the particular study previously cited before moving forward to other issues, shall we?

    Please, someone explain the merits of that study as I failed to see them.

    Let's talk about the 'science'....

    ReplyDelete
  31. You don't see merit in, "And although no improvements were demonstrated, the researchers acknowledged that some subgroups of children, particularly those with significant gastrointestinal (GI) symptoms, might receive some benefit from dietary changes."

    Thought you might see some merit in that.

    This study is not published yet, was just presented at a conference, and is available only in abstract form, so discussing its specific merits would be difficult, given that only the abstract is available, and I didn't attend the conference. That said, based on the description of it, it appears to have been a well-designed and well-controlled study targeting a very specific research question: The effect on autism-related behaviors of removing casein and gluten from the diet and then the effect of reintroducing them. The population of the study is small, and that's always considered a limitation. I don't see any reason, based on what I've read about it, to describe it as "science" in quotation marks, as though it weren't real science. The researchers don't appear to be celebrating the negative outcome, so the attitude is odd.

    And then there are the actual peer-reviewed, published studies I noted: http://daisymayfattypants.blogspot.com/2010/05/this-ones-about-science.html

    ReplyDelete
  32. Thanks for responding, Emily.

    Squid had said, "The latest research on GFCF diets and children with autism but without celiac (you didn't mention the nature of your child's digestive troubles) has determined that the GFCF diet doesn't help and may in fact be harmful"

    Those were the conclusions that I found to be without merit. 1) GFCF doesn't help and 2) may be harmful.

    Since only an abstract is available, we cannot see what the exclusion criteria were, what was deemed sufficient nutrition, which doctors claiming results from GFCF were consulted in the design of the study etc etc. IN short there is not enough information available about this particular study to discuss its merits.

    Which particular study does have enough information available to discuss its merits? But, before we abandon discussion of this particular study can we agree that THIS study does not and can not conclude 1) GFCF doesn't help and 2) GFCF may be harmful ? Or would you particularly point out justification for either of those conclusions?

    Thanks.

    ReplyDelete
  33. I can't speak for Shannon to explain what she meant. I can only address the two assertions from my own reading.

    1) GFCF doesn't help.
    Caveat: This is based on a news release, admittedly from the university, but it's still a news release, and on the IMFAR abstract. The conclusions seem to indicate no difference between groups, i.e., the diet didn't improve anything and G and C didn't worsen anything. The title of the release itself is "Popular autism diet does not demonstrate behavioral improvement." I assume that it has the imprimatur of the researchers quoted in it.The subtitle is, "Tightly controlled study saw no benefits for sleep, attention and bowel function."

    I'm using the university's Website for this: http://www.urmc.rochester.edu/news/story/index.cfm?id=2860

    And the IMFAR abstract: http://imfar.confex.com/imfar/2010/webprogram/Paper6183.html

    This study was a double-blind, placebo-controlled study. That's considered a gold-standard study design.

    2) GFCF may be harmful.
    This inference could come from an observation in the release itself: "The researchers took on the difficult yet crucial task of ensuring participants received needed nutrients, as children on gluten-free, casein-free diets may eat inadequate amounts of vitamin D, calcium, iron and high quality protein."

    Or it could come from study findings. The authors state "The group RFRLRS data 2 hours post challenge were higher after placebo than after challenges of casein (p=.013), gluten (p=0.024) or gluten + casein (p= 0.021). These differences were not present 24 hours post challenge." These P values would be considered significant except, presumably, for the requirement of a lower P value in the case of multiple comparisons, so the authors concluded, based on the news release, that, "Children demonstrated a small increase in social language and interest in interaction after the challenges with gluten or casein on the Ritvo Freeman Real Life Rating Scale; however, it did not reach statistical significance. That means because of the small difference and the small number of participants in the study, the finding may be due to chance alone." The inference from this could be that the diet showed a trend to actually interfere with these improved scores that the children receiving G and C exhibited. Given the use of "may" in assertion (2), that doesn't seem to be overstepping on either count.

    For a good explanation of the scale used in this study, see here: http://ajp.psychiatryonline.org/cgi/content/full/162/6/1142

    ReplyDelete
  34. Tallblonde1, Sure, what Emily wrote. :)

    I am disinclined to engage with people who feel threatened by neutral statements (suggesting people think for themselves), are dismissive (insisting that the GFCF study is bogus but your anecdotes are legitimate) or perseverate on details to direct attention away from a larger argument.

    I am also leery of those who pull a J.B. Handley in claim-jumping expertise ("Some of us have actual skill in the art of experiments, experimental design, and statistics...") yet leave their name unlinked.

    Belief can lead to righteousness intoxication, making releasing those beliefs extremely difficult, because then where would you get that high? What would you have left?

    I believed my son was vaccine injured, too, until I enrolled him in a MIND Institute study on autism & regression that forced me to systematically review his records, journals, videos, & pictures. The researchers reviewed them as well, and determined that he had not regressed, but that his autism symptoms - which had been present all along - became more evident around 12 - 15 months - coincidentally the MMR shot window. It was hard to accept that I was wrong, that we had no explanation for his autism. But I moved on.

    We all have the right to share our beliefs. But we do not have the right to expect others to accept them, especially when the evidence to the contrary is so strong.

    ReplyDelete
  35. Wow, I left this thread for a couple days and look what happened... I suppose I'm not surprised, though I am saddened.

    TallBlonde - there are a couple of very significant points that you have failed to recognize about your own experience. First, and this is common to many of the parents who feel their children were vaccine injured, you are lumping the "vaccine"issues together as though they were one big issue. They are not. Wakefield specifically focused on the MMR, not all vaccines. Mercury in the preservative Thimerosol, which is no longer in childhood vaccines and hasn't been for several years, was believed to cause different issues than the ones Wakefield focused on. They are separate issues, not all one in the same.

    You also mention that you have done many different interventions for your child, both GFCF and chelation being on that list, among other things. You even admit that you did several things simultaneously. How do you know what has helped him? You can't know, you did several things at the same time. If you don't really know what has helped then you can't really know what the problem was you were affecting. This is the issue with throwing everything at our children at once, you will likely never really know what has actually helped. Any physician who is worth seeing knows that you never start multiple interventions at the same time for this reason. I don't begrudge you your success, I am glad that you have found some. But you are making claims you cannot back up with anything but an anecdotal mish-mash.

    I have an almost 12 year old son who is profoundly autistic. I tried the GFCF diet for 3 years, very strictly. We also tried Vit B12 shots. We did ABA for 3 years straight. We tried SuperNuThera. He did hippotherapy, the list goes on. We even took him to a dr in Oregon, a DAN doc, who tested him for 101 million things (negative on the mercury btw) and was the one who suggested the B12 shots. Sadly, none of this made much of a difference for him. My son has made more progress simply through the consistent work of some wonderful teachers and support staff at his schools over the years, than he ever did with any of the things we tried. He never had an adverse response to his vaccines. He was a fabulous baby. Easier than his big brother was who is not on the spectrum. Vaccines did not make my son autistic. I'm not sure why he has the issues he has. It's frustrating and difficult but I won't blame something that has no basis in fact, I won't confuse two separate issues, and I won't make assumptions based on what I might want to believe, when the answer can't possibly be clear. It's just plain dangerous. There was a reason vaccines were developed in the first place, and if you don't believe that many many children and adults used to die from these diseases, then go read some history. It's there. The vaccine companies didn't write it, they didn't even exist. Talk to the families of the few children that have died of measles over the last decade in the UK since the vaccination rate dropped so low thanks to Mr Wakefield. Do you think they would make the same decision again?

    I doubt it.

    And not to TallBlonde, but Anonymous: thank you for providing yet another clear example of Shannon's point. Your hostility, assumptions (embrace autism? really? how dare you, honestly, your ignorance is astounding) and anger simply demonstrate what she said and showed in her post nicely, thank you.

    Shannon, keep up the good work.

    ReplyDelete
  36. RachandBrendon4:44 AM

    "Mercury in the preservative Thimerosol, which is no longer in childhood vaccines and hasn't been for several years" Actually, it is in the DTaP along with the flu shot and H1N1 shot.

    ReplyDelete
  37. I sometimes wonder if someday we're going to find out that, for some people, the symptoms currently defined as autism can be attributed to a root cause of some other kind of disorder.

    Like maybe children who are "recovered" from autism are actually recovered from a nutritional deficiency or an auto-immune disorder who's symptoms manifest behaviorally what looks like autism.

    Sometimes I think we throw around the word autism so casually despite the fact there is little solid understanding of it other than it's diagnosed observationally based on actions (or lack thereof).

    I consider my daughter to have autistic symptoms that have greatly lessened over time and will continue to lessen. She also responds to diet changes. Are the two related? I have no idea. My sister, who is 41 years old, has almost the same identical food sensitivities as my daughter. She doesn't have autism, but she has depression, anxiety and psoriasis - all of which respond to dietary changes. She would say she's recovered from depression, but that it will return if she lets her diet change. Why cannot the same be said of autistic symptoms? Or any behavioral issues?

    As for studies and science proving that any kind of dietary change is effective, I doubt it will ever happen because wouldn't we have to first screen for people who might have underlying food issues?

    ReplyDelete
  38. Actually, it's in the multidose vials of the flu shots, and there are thimerosal-free formulations of DTaP available. http://www.cdc.gov/vaccinesafety/concerns/thimerosal/index.html

    It's never been in MMR, but people conflate the two all the time. Wakefield himself seems to have moved away from MMR to thimerosal for reasons that remain mysterious.

    My children have never had a shot containing thimerosal.

    For the record, thimerosal has been used in vaccines for about 80 years, so people urging a purported link between these and the "increase" in autism diagnoses do not have time correlation on their sides.

    For anyone concerned about mercury--real, effective levels of it--hope you never eat fish.

    ReplyDelete
  39. I'm also curious as to how a pediatrician could go straight into emergency pediatriacs since that would have at least required a completion of a fellowship in the specialty. I'd be interested to know who this pediatrician was and were s/he served their fellowship, which should have taken two or three years to complete. In Texas, the only program offered for such fellowships is at Baylor COM and requires three years if you did your residency in pediatrics.

    "Although some of these diplomates received certification by the practice route, this is no longer an option; to obtain subspecialty certification, one must complete an accredited fellowship in PEM."
    http://www.saem.org/saemdnn/Home/Communities/Fellows/Fellowship/PediatricEmergencyMedicine/tabid/155/Default.aspx

    ReplyDelete
  40. There are very few PEMs in Austin, so I'd like to know which one it is. I'd be interested in talking with this doctor. Thanks.

    ReplyDelete
  41. Wow. How did I miss this? "Some of us have actual skill in the art of experiments, experimental design, and statistics and we can recognize vaccine safety is not proven - through analysis of not only anecdotal evidence but also scientific data."

    Some of us do, indeed. And I would never say that vaccine safety is "proven," because that would be an absolutist statement with no basis in reality. Of course vaccines are not safe for everyone, and of course they are not devoid of risk. Anyone who has some skill in statistics would, however, recognize how clearly the overall benefits of vaccines outweigh the risk. And they would realize how limited the individual risk is, as well.

    ReplyDelete
  42. Goodfountain, nice to see you here.

    I agree, I don't believe that everything that's currently labeled "autism" is autism, and I say so, frequently.

    I also stated, earlier in the comments, that I don't doubt that people whose digestive symptoms improve also have improved behavior. I know three such people personally. They have 1) ulcerative colitis, 2) debilitating migraines, and 3) the same symptoms as your sister. Their symptoms improve when they go off gluten/casein, and their doctors can't explain it, they only know that it works. But the three also have to be extremely careful to maintain proper nutrition. And none of them had autism.

    If parents are going to try the GFCF diet, they need to research it thoroughly so they know the risks, be careful about nutrition, and understand that it doesn't help most kids with autism - and when it does, it's most likely because of a co-morbid digestive condition. Just as if your child has Down syndrome, you know that there's also a chance they'll have heart problems. But no one claims the heart problems cause the Down syndrome.

    I do have faith that researchers will tease out and isolate the causes for digestive problems and autism eventually. But, as was demonstrated last week on Glee when Artie got pumped up and then heartbroken about potential breakthroughs in repairing spinal cord damage - it's going to take time. We have to be patient. And that's really fucking hard for those of us who have children who could use some answers right now.

    ReplyDelete
  43. I find it insulting that folks like me who don't do the diets/chelating/biomed stuff get constantly accused and doing nothing for my child. I don't attack anyone for what they do with their child, I don't understand why I'm attacked for what I do with mine. We do what we feel is best for him.
    That said, we started off in the biomed camp, did the diets for two years, did the supplements, did the chelation and guess what? NO CHANGE. He had the bowels issues, he had the immune issues, we tried the things suggested (like probiotics, healing the gut, etc) and no change. We've since stopped since it did NOTHING for our child.

    This does not make us lazy. It doesn't make us stupid. It doesn't make us arrogant. It just didn't work. Not for him. If someone feels that this works for their child, more power to them. But don't go blaming it on vaccines. I know plenty of folks who don't vaccinate their children and have severely autistic children. NO VACCINES AT ALL. They've tried the biomed stuff. NOTHING. Now what are they supposed to do?

    I don't mean to open up more debate on this(sorry for hijacking your blog, Squid), but I feel strongly that we've done everything we could for our child. And we continue to do everything we can for our child. I do NOT regret vaccination. Even if it were true, I'd rather have an autistic child than a dead one.

    ReplyDelete
  44. read all the commments: *headache*

    ReplyDelete
  45. btw not belittling your comments Domestic Goddess, I actually understood what you had to say. You were clear, concise, and commented on what works for YOUR child. I just have a hard time with the my way the highway and all this inside fighting in the Autism community.

    ReplyDelete
  46. oops..*my way or the highway*

    ReplyDelete
  47. Emily, please provide evidence supporting your assertion the benefits outweigh the risks of vaccination. This is a sacred cow fallacy.

    Here is a link to studies supporting GFCF. As well as a link to a petition regarding the cited, seriously flawed study.

    http://www.autismbiomed.com/gut-diet.html

    ReplyDelete
  48. Yes, Emily, straight into with the restrictions you note.
    He left the town where he was our pediatrician, next time I found him he was listed here. http://www.bcm.edu/pediatrics/index.cfm?Realm=99992424&This_Template=PEMGeneralist

    He gave me his 'underhanded approval' to continue with biomed. Given what happened to Wakefield for expressing concern with vaccines, I prefer not to more particularly point him out as a courtesy.

    ReplyDelete
  49. http://www.jfponline.com/uploadedFiles/Journal_Site_Files/Journal_of_Family_Practice/supplement_archive/WYE-J-2_Commu.pdf
    The tables lay it out for a few different diseases against which we vaccinate

    http://www.vaccineethics.org/issue_briefs/risk_safety.php

    http://www.cdc.gov/vaccines/vac-gen/whatifstop.htm

    And one of my personal favorites: http://www.cdc.gov/vaccines/vac-gen/6mishome.htm#risk

    http://daisymayfattypants.blogspot.com/2008/03/deadly-history.html

    Moo.
    -----------------------------
    I care as much about a petition as I do about whether or not someone is using GFCF, which is to say, very little. My concerns about the GFCF diet and autism are (1) that clinicians don't dismiss autistic people who present with GI problems as having them because they're autistic...and then neglect to do an appropriate GI workup on the patient, and (2) that parents are aware of the potential for specific deficiencies with the diet. The upshot of most of these studies is that the GI issues aren't autism specific, and children need an appropriate GI workup when they present with GI issues, autism or not.

    With that, I've got to sign off on this delightful conversation. I've got a bit of packing to do. Since we're all vaccinated, we don't have to worry that we'll be transporting some awful disease we don't yet know we have to other climes, populations, and families. Phew.

    ReplyDelete

Respectful disagreement encouraged.

Related Posts with Thumbnails