Respectful Insolence

About a week ago, I took note of what appears to be a new offshoot of the antivaccine movement known as the Thinking Moms’ Revolution (TMR). At the time, I pointed out the toxic combination of hubris mixed with ignorance that resulted in a risible “declaration of independence” from “medical tyranny.” In reality, it was one long antivaccine rant full of long refuted myths and pseudoscience combined with a demand for an unethical study of the current vaccine schedule verus placebo. In brief, to anyone with half a brain, it would have been embarrassing. Apparently the woman who wrote it lacks even that intellectual capacity, belying the name “thinking moms.”

One thing that the “declaration of independence” was about more than anything else was hostility towards scientific medicine. Indeed, the “independence” demanded was, more than anything else, “independence” from science-based medicine, about “freedom” to refuse vaccination based on misinformed consent that paints vaccines as dangerous–deadly, even–and denies their proven efficacy in preventing morbidity and mortality from infectious disease. More of this hostility was on display over the last week or so in the form of two posts. The one I noticed first appeared yesterday and demonstrates the pure hostility towards medical science of these ‘thinking moms” directed at an individual physician as a surrogate for the vaccines they hate and the science that shows the worthlessness of “biomedical” autism quackery. It’s in the form of an open letter entitled The Letter I Wish I Could Send To My Old Pediatrician. And so it begins:

You probably haven’t even noticed that I pulled my child out of your practice but I wanted to take a minute to explain why I did. You SUCK! Your lack of curiosity about my son’s medical decompensation and subsequent Autism after his over-vaccination under your care is offensive. Apparently “do no harm” really means “do not care”.

Do you know that my husband hates you so much that I can’t mention your name in his presence? Yes, we blame YOU. Since the American Academy of Pediatrics (AAP) had the forethought to indemnify all pediatricians with zero legal liability before implementing the harshest vaccine schedule in the world, my only recourse is this letter. “Oh, but…” you whine, “we don’t know that vaccines cause Autism.” Actually, if you read the vaccine package inserts we do know and they do.

Stay classy, “thinking mom.” Stay classy. I especially like the “Dear Dr. Asshat” introduction.

But what about this package insert? Does it really say that vaccines cause autism? Not really. What it says is this:

Adverse events reported during post-approval use of Tripedia vaccine include idiopathic thrombocytopenic purpura, SIDS, anaphylactic reaction, cellulitis, autism, convulsion/grand mal convulsion, encephalopathy, hypotonia, neuropathy, somnolence and apnea. Events were included in this list because of the seriousness or frequency of reporting. Because these events are reported voluntarily from a population of uncertain size, it is not always possible to reliably estimate their frequencies or to establish a causal relationship to components of Tripedia vaccine.

In other words, these are the things that have been reported. These are not conditions, diseases, or events that have been shown to be caused by the DTaP vaccine. There’s a huge difference. As I’ve pointed out so many times before, correlation does not necessarily equal causation. This particular “thinking mom,” known as Mama Mac, simply assumes that the fact that these adverse reactions have been reported means that the government is “admitting” that vaccines cause autism. As has been pointed out before, large epidemiological studies have failed to find even a whisper of a hint of a correlation between vaccines and autism. To the best of the ability of science to detect it, vaccines do not cause autism.

But Mama Mac believes that vaccines cause autism; so to her they do, and that justifies her “open letter” to her child’s former pediatrician in which she blames him for her child’s autism, concluding:

You broke my child. You took a healthy baby boy and by 18 months you left me with a yard sale of medical problems and neurological damage. Your response was one lousy referral to Early Intervention. Quite simply, you stole my son’s future. Pediatricians should be looking harder at Autism than anyone else. They should be the most worried. You are, as a group, guiltiest of refusing to acknowledge the enormity of the Autism crisis. The silence from the pediatric community on Autism is deafening. Your colleagues are ignoring their role in the decimation of a generation of children. You are practicing a form of medicine you cannot defend. There have been no studies on the full vaccination schedule’s subsequent effects on a baby. You have no research to fall back on. The studies don’t exist. Pediatric medicine has left common sense behind.

Yes, it’s all there, the fallacy of the “autism epidemic,” the belief that vaccines cause autism, and, of course, the ultimate belief that vaccines will be proven to be the cause of autism. Mama Mac fantasizes that when that realization comes pediatricians everywhere, including the pediatrician she hates now, will devastate them. Then, right on cue, “thinking moms” commenters start piling on. One calls pediatricians “egocentric harbingers of neurological toxins,” which I’ll give credit for an amusing turn of phrase even if the phrase has no bearing on reality. One of them even cites Dr. Lawrence Palevsky, whom we’ve met before for his role in an antivaccine propaganda film and has made a name for himself in the antivaccine underground as a pediatrician who has become antivaccine. Supposedly Dr. Palevsky, upon being awarded the “Visionary Award” by Barbara Loe Fisher’s antivacine group the National Vaccine Information Center, broke down in just the way that Mama Mac fantasizes about her pediatrician breaking down. I do, however, want to know just what medical school Dr. Palevsky went to, as he says, “”When I went through medical school, I was taught that vaccines were completely safe and completely effective, and I had no reason to believe otherwise.” If his medical school really taught him that vaccines were completely effective and completely safe, he needs to get his money back. He was robbed.

Personally, I suspect he’s distorted his memory to fit his current antivaccine preconceptions.

One thing I wondered. Why on earth did Mama Mac post this as an open letter, instead of sending it at the object of her hatred, her former pediatrician? It strikes me as rather cowardly. She could easily have let this pediatrician know how she felt, but she didn’t. Instead, she wrote a screed and posted it on an antivaccine website. My guess is that she did that because it’s really all about her, not her child.

About a week before this, another of the “thinking moms,” Mamacita, posted an article that shows just what pediatricians have to put up with these days. In a post given the wonderfully Orwellian title, Freedom to Think, Mamacita brags about, in essence, a mother burying her poor pediatrician in antivaccine misinformation to justify her refusal to vaccinate. To her, “thinking” apparently means this:

For the next scheduled appointment the young mother decided it was her turn to call the shots. She started to read. She started to ask questions. She started to analyze what was considered routine and why. She looked up the names of the diseases routine vaccines were supposed to ward against. Then she looked up what was in those vaccines. She looked up their efficacy and what studies had been done, and those studies that hadn’t been done either.

Then she decided it was too many, too soon for her child.

Actually, what Mamcita is describing is, very much like Mama Mac’s story, a fantasy, what she wishes or envisions a “thinking mom” to do. What usually happens in this sort of a situation is that the mother, prodded by either antivaccine parents or having come across antivaccine propaganda on the Internet, begins a Google search and “educates” herself on Google University. The antivaccine misinformation flows like the proverbial rain shower. She learns “what’s really in vaccines” from antivaccine websites promoting the “toxins gambit.” She finds dubious lists of studies that supposedly prove that vaccines cause autism and other sites attacking existing studies that demonstrate the safety of vaccines.

Another mind has been poisoned by antivaccine misinformation. That is what Mamacita is celebrating. The result of that antivaccine misinformation is that this young mother refuses vaccines, refuses to sign a form stating that she is refusing vaccination for her child, and hectors the harried pediatrician and his nurse, spewing every antivaccine trope in the book, including “too many too soon,” the “toxins gambit,” and all the misinformation she had imbibed from the Internet. The pediatrician and his nurse are portrayed as rolling their eyes and sighing, and perhaps they do. After all, even the most patient among us can have trouble at times hiding our reactions to misinformation and pseudoscience that can endanger our patients. That’s about the only thing in Mamacita’s story that rings even remotely true. Well, that, and the colossal arrogance of ignorance that leads Mamacita to portray misinformed refusal of vaccines as “thinking”:

Thrusting the form at her the nurse said, “We aren’t signing this. It’s not legit and has nothing to do with what the officials tell us to say.” The young mother gently took the form, folded it and slid it into the outside pocket of her diaper bag. Feeling as if she could easily burst into tears she picked up her son, turned to face the nurse and said, “I understand you’re running a business here, and that all those vaccines help make you money. I realize that some good might have come from the vaccine program at one time, but to ask me to inject those vaccines into my baby is ridiculous. You have no idea how they interact with each other or how he’ll handle them. His little body… it’s so little, still developing. I can walk away knowing that I had found enough information to support my decision to say no thank you today. It’s a shame you and the doctor couldn’t do the same — to take time to listen to me or attempt to educate me. Please don’t call us for any follow-up appointments. We’ll be going elsewhere.”

Ah, yes. Now we have the a variant of the “pharma shill gambit” in which pediatricians are so dependent on vaccines to make money that they can’t be objective. We also have an argument from ignorance in which, just because this young mom can’t imagine how it could be safe to administer that many vaccines at one time then it must not be safe.

That’s apparently what Mamacita means by “thinking.”

Of course, if this mother “thinks” the way Mamacita thinks she should, the pediatrician could spend hours with no one but this mother and it is highly unlikely that he would convince her of the errors in her understanding of vaccines and infectious disease. That’s because what TMR promotes is not thinking. It’s emotion-based revulsion and fear of vaccines and, above all, science and the science-based medicine that does not tell them what they want to hear.

Too bad that’s not thinking at all.

Comments

  1. #1 Agashem
    May 17, 2012

    *le sigh* I have come across this attitude before and it is so boring. Really, these moms think they have knowledge that the MD doesn’t. I remember years ago at a book club one mom praising the book titled something like “How to Raise a Healthy Child in Spite of your Doctor”. My answer to that was, yeah it is easy for you sitting here with your priveleged life to think that but in reality you have an arts degree and are in no position to argue science. That did not go over too well.
    Thinking moms my arse.

  2. #2 Ellie
    May 17, 2012

    “My guess is that she did that because it’s really all about her, not her child.”

    Your guess would be the same as mine. I don’t see that it’s ever about the child. It’s always about the parent — mostly the mother, I’m ashamed (as a mother) to say. All the facts from doctors, the government, and survivors of childhood diseases, like me, will make no difference. They would rather see their children suffer from illness, suffer from lifelong complications of that illness, see their little bodies twisting and jerking in pain from whooping cough, be crippled by polio, or even die, rather than have this be about their children instead of themselves.

    I wouldn’t have thought that even a couple of years ago, but I have a daughter who sometimes frequents a website called (I think) Circle of Moms, and reports back to me about what some mothers (only by virtue of the fact they have given birth, because mothering sure as hell isn’t what they do) have said about vaccines and about deliberately exposing their babies and small children to infectious diseases.

    They are all on my list of the people I would be happy to see spend 24 hours in an iron lung.

  3. #3 kia
    May 17, 2012

    Never fails to bemuse me how these “thinking moms” truly believe they know more than doctors and researchers. Why yes, a couple of hours on Google SURELY means you’re more educated on the topic than those who have studied for years at university and met stringent testing and certification standards! Of course!

  4. #5 kia
    May 17, 2012

    I just checked that link (eyeroll) and then had a look at the page in general. Look at the rather personal bile they spew Amanda Peet’s way, because she’s promoting vax in the developing world. They all seem so angry and full of hate? I thought they were all supposed to be peace, love, and organic mungbeans.

  5. #6 Narad
    May 17, 2012

    Since the American Academy of Pediatrics (AAP) had the forethought to indemnify all pediatricians with zero legal liability before implementing the harshest vaccine schedule in the world, my only recourse is this letter.

    There’s a rather confused sort of remark to be coming from a “thinking mom.”

  6. #7 palindrom
    May 17, 2012

    I’ve come to learn that, on web comment boards, admonitions to “do your own research” almost always mean “go find a bunch of websites run by lunatics and/or astroturf organizations (e.g., with global warming) and uncritically accept whatever counterfactual bullshit they spew.”

  7. #8 Ren
    May 17, 2012

    my only recourse is this letter

    Is it? Is it really?

    Of course it’s not. She could go here: h_ttp://www.uscfc.uscourts.gov/vaccine-programoffice-special-masters

    She could look on the left side about “filing a complaint”. She could get her ducks in a row and get on with it. They all could.

    Couldn’t they?

  8. #9 BA
    May 17, 2012

    Don’t take this as a criticism of the post as I’m as anti anti-vaccination as the day is long. However, there is one aspect of “autism epidemic” that has more reality than is regularly acknowledged here. Though the rising prevalence seems to be largely due to diagnostic substitution, there are clearly more persons with autism than we have thought there were in the past. There are specific needs of those with ASDs then and that should result in autism being seen as a more pressing issue than it was in the past (i.e., it occurs more frequently than we previously thought, we should allocate more resources towards that issue). Not an epidemic in the traditional sense but a disorder that should be attended to and I also believe that persons with non ASD developmental disorders are underserved.

  9. #10 Dianne
    May 17, 2012

    My goodness. That woman really hates her child, doesn’t she? I would strongly consider calling CPS if I received that sort of letter from a parent. That baby is at increased risk of abuse*, especially since she seems to have rejected the idea of early intervention.

    *Intentional or unintentional. She may beat the child for misbehaving or she may send it to a quack who will kill it with “chelation”. Either way, the child is at increased risk.

  10. #11 Denice Walter
    May 17, 2012

    I’ve been reading TMR since its inception- and haven’t yet died of vitriol or holier-than-thou poisoning. Oh wait, I’m not a parent, thus my comments should be viewed as *entirely* inappropriate and dis-ingenuous.

    A study ( Gardner et al, 2010) showed that parents of young children were more likely to accept vaccine information from other parents rather than from governmental sources.

    AutismOne 2012 makes much of its role as a meet-up for parents. Blogs like AoA and TMR focus on parents’ g-d-given inalienable rights as *experts*. Lately, the invective so casually hurled at doctors and other professionals has begun to match that at web woo-meisters’ dens of iniquity and bad prose.

    Are women like Alison MacNeil role models for others? Is her advice taken seriously – even by a small minority of parents? TMR includes amongst its bevy of diarists a social worker ( MacNeil), a *psychologist* ( Saint) and a teacher or two. Shouldn’t these women know better?

    I’ll return….

  11. #12 Eric Lund
    May 17, 2012

    Ren @8: But then they would have to present actual evidence and take the risk that the evidence presented will be considered insufficient. Besides, if you were sporting that kind of tin foil headgear, you’d probably think that the vaccine court is in on the conspiracy–the second paragraph of the letter Orac quotes strongly implies this belief.

  12. #13 Anj
    May 17, 2012

    le sigh

    Perhaps a diagnosis of ASD should also come with free mental health services for the parents for a year. While the phrase “processing the experience” annoys me a little, it seems that some parents are indeed having difficulty doing just that.

  13. #14 Raging Bee
    May 17, 2012

    I’m beginning to wonder if maybe there’s a bit of animal instinct kicking in here. We human animals have an instinct to nurture and protect our children; but maybe we also have an instinct to weed out the weakest offspring for the overall strength of the tribe. And since we’re not allowed to do that the Spartan way, and birth-control and abortion are increasingly frowned upon, maybe that unacknowledged animal urge is finding another outlet in this mindless rejection of one of our most effective preventive-medicine tools.

    Seriously, it’s possible that restrictions on reproductive choice, unstoppable population growth, and destruction of the biosphere needed to support it, are combining with hyperemotional hatred of rational science and medicine, to produce a wave of mass-psychosis, to bring about a breakdown of social protections and cause the break in population growth that we weren’t willing to ensure by less drastic means.

  14. #15 adelady
    May 17, 2012

    Good story on Australia’s ABC Catalyst program tonight.

    http://www.abc.net.au/catalyst/stories/3505097.htm

    And, glory be, not too many loonies in the after program online discussion. http://www2b.abc.net.au/tmb/Client/Message.aspx?b=285&t=1&a=0&ps=50&m=5&dm=3 . Though a lot of people were more interested in the following story on Kawasaki disease.

  15. #16 MikeMa
    May 17, 2012

    As Ren says, they could take their case to the vaccine court where a much lower evidence bar exists in their favor. The reason this seems to them to not be a valid option is that many parents have tried and lost because, even with the relaxed rules, the case cannot be made.

    I also suspect, based on the emotional and fact-free content of these rants, that the parents would lie, without a glance back, about any causation evidence contrary to their ideas. They are so sure of their (non) facts about a vaccine-autism link that they would fabricate evidence and ignore contrary indications. Even with that possibility, few ever succeed in the vaccine court. That’s gotta hurt.

  16. #17 FilipinoMDstudent
    May 17, 2012

    I am just so glad that here in the Philippines, this nonsense is not as prevalent compared to the US or UK. However, I’m not entirely sure which cause of low vaccination rates is more difficult to remedy: the one due to poverty or the one due to nonsense of antivaxxers.

  17. #18 Denice Walter
    May 17, 2012

    I look at anti-vax ( or more precisely vaccines-cause-autism) blogs as feeble and mis-guided attempts at group therapy for distraught parents. They discuss problems, try to seek solutions, allow a ( supposedly) non-judgmental forum and provide support BUT leave out the part about checking each others’ drifts toward un-reality. *Au contraire*- they re-inforce each others’ drift.

    This is my slant on what’s going individually:
    the diagnosis of autism came as a slap in the face to parents who may have had grandiose dreams for their children involving educational and occupational supremacy. They believe that autism has taken that future away. Perhaps they blame themselves for *allowing* the doctor to vaccinate their child and need to get rid of the guilt by castigating medical professionals who beguiled them into wrong-doing.

    Their lives as parents – especially if their child has a severe form of autism- are fraught with difficulties they didn’t expect. They may feel stressed and simultaneously somehow diminished because their child is not the fictional perfection they dreamed up- btw- nobody’s is.

    Efforts like writing, starting activist groups and networking serve as ways to make unhappy parents *feel better* about themselves and their child. However, buying into alt med mythology keeps them from finding REAL therapeutic solutions for both themselves and their child: it takes them farther away from acceptance.

    Vituperate rhetoric doesn’t achieve much in a long-term situation where cool heads usually prevail. Writing like this fans the flames of emotion which -btw- has been known to interfere with straight thinking and implementing long range goals..

  18. #19 augustine
    May 17, 2012

    Ren

    Is it? Is it really?
    Of course it’s not. She could go here: h_ttp://www.uscfc.uscourts.gov/vaccine-programoffice-special-masters
    She could look on the left side about “filing a complaint”. She could get her ducks in a row and get on with it. They all could.
    Couldn’t they?

    If one wants to report Illegal Mexican drug cartel activity all they have to do is go to the police. Problem solved. It’s really that simple.

    We all know that vaccine damage doesn’t happen to real people. It’s only theoretical. And even then it’s still debatable according to “scientific” minded science bloggers.

  19. #20 Adam
    May 17, 2012

    Adverse events reported after watching Barney also include idiopathic thrombocytopenic purpura, SIDS, anaphylactic reaction, cellulitis, autism, convulsion/grand mal convulsion, encephalopathy, hypotonia, neuropathy, somnolence and apnea.

    Barney maims kids!

  20. #21 JGC
    May 17, 2012

    Adam @18

    You left out the projectile vomiting and induced craving for strong drink–of course, that’s only seen in adults.

  21. #22 Prometheus
    May 17, 2012

    BA (#9):

    “…there are clearly more persons with autism than we have thought there were in the past.”

    True enough. However, the reason is that the definition (diagnostic criteria) for autism – and the nebulous “autism spectrum disorder” – has evolved to encompass more and more people.

    If you look at US Dept. of Education data, the percentage of children with disabilities (as defined by the IDEA) hasn’t changed much in the past fifteen-plus years, but the percentage of children labelled as “mentally retarded” has dropped in lockstep with the increase in the percentage of children labelled “autistic”.

    The same thing is found in the few studies that have looked at adults with disabilities – using contemporary diagnostic criteria, the percentage of adults with autism is similar to the percentage of children with autism.

    It would appear – from the data – that we aren’t finding more people with disabilities; all that seems to be changing are the labels.

    Prometheus

  22. #23 Denice Walter
    May 17, 2012

    Altho’ I have to sign off, I should mention that fellow I know has suggested that I offer my services- briefly- to these women by commenting on their blog, reading them the riot act, pointing them towards self-understanding etc.

    No. While I have a strong tolerance for listening to un-realistic beliefs and having insults hurled at me, I’m not a masochist. And it would fall on *deaf ears*.

  23. #24 Pareidolius
    May 17, 2012

    You broke my child. You took a healthy baby boy and by 18 months you left me with a yard sale of medical problems and neurological damage.

    This sad, terrible line reveals the core of her letter. Her rage is clearly directed at her child, who she evidently views as no better than a piece of debris. Her real problem is that she lives in a “shit happens” universe, where many things happen by chance and she refuses to accept it. She wants to blame. Understandably, her pattern recognition software wants to find a reason for her misfortune. I get that. But acceptance of reality is her only way out of a lifetime of paranoid ranting and railing at straw men and ultimately missing out on the chance to actually make a constructive diffence in the lives of families living with autism, especially her own.

  24. #25 lilady
    May 17, 2012

    Here’s Alison MacNeil’s interview with her father Jim MacNeil where she discusses her child (in a reasonable…non disparaging manner)

    http://video.pbs.org/video/1884325580/

    She “claims” that her son was perfectly “normal” until he was given his MMR, DTaP and Hib vaccines at 15 months of age. Within 1 month she had brought him to a developmental pediatrician who diagnosed him with autism. That sudden onset really should “qualify” Luke for compensation in the Vaccine Court.

    Jim Macneil starts the interview and ~ 3 minutes “mentions” mitochondrial disorders…which Alison elaborates on. The new disorder de jour for this crowd is “mito dysfunction” (see all the posts at the TMR). Further along we see an interview with Luke’s older sister. She appears to be quite upset and ill-at-ease talking to her grandfather on camera.

    Calli Arcale on RI suggested yesterday, that Alison should send the letter to the pediatrician and I concurred in my post yesterday. Our comments have been duly noticed at the TMR, so careful ORAC, you too may end up on their fecal roster.

    Alison, who is a psychiatric social worker, needs some help for herself and for the sake of her children. What I cannot fathom is how she refers to her son in the “rant” make-believe letter directed at the pediatrician:

    “You broke my child. You took a healthy baby boy and by 18 months you left me with a yard sale of medical problems and neurological damage. Your response was one lousy referral to Early Intervention. Quite simply, you stole my son’s future.”

    According to the militant “mothers” theirs is the worst possible situation…they have a child with some developmental issues. I could have only wished to have a child who had their child’s “problems”. I would have loved to have a child who was healthy, who walked, who talked, who didn’t require around-the-clock intensive care and who didn’t die.

  25. #26 Dianne
    May 17, 2012

    She “claims” that her son was perfectly “normal” until he was given his MMR, DTaP and Hib vaccines at 15 months of age. Within 1 month she had brought him to a developmental pediatrician who diagnosed him with autism.

    What symptoms of autism can a baby under 15 months even show?

  26. #27 lilady
    May 17, 2012

    @ Dianne: See the video ~ 3 minutes in.

    “He was AOK at 15 months when he had MMR, DTap and Hib vaccines. When he was 16 months old I was sitting at my computer and noticed he was spinning his sister’s doll’s toy plate on its end. I took him to a developmental pediatrician and said to the pediatrician he was irritable and crying inconsolably and had not had a “formed” bowel movement since the shots”.

  27. #28 JGC
    May 17, 2012

    One early symptom appears to be idiosyncratic gaze behavior which can be very early–unlike other children autistic infants don’t initiate or maintain eye-contact when held by their parents, and often will instead focus intently on a moving object (a ceiling fan) or a bright light fixture instead. There are behavioral characteristics as well–failure to respond to their name or teh sound of a familiar voice, failure to initiate physical contact (i.e., reaching out to be picked up and held), etc.

    Sooner or later we’ll get pretty good at identifying probable cases of autism long before an infant is old enough to receive immunizations (and won’t A of A hate it when that happens…)

    Eventually we’ll get pretty

  28. #29 Marry Me, Mindy
    May 17, 2012

    But acceptance of reality is her only way out of a lifetime of paranoid ranting and railing at straw men and ultimately missing out on the chance to actually make a constructive diffence in the lives of families living with autism, especially her own.

    I have often asked this. Suppose it is true that vaccination “caused” their child’s autism.

    How does that help them? Aside from giving them someone to blame, how would the knowledge that vaccination caused autism (if it were true) help the parents of autistic children or the children themselves?

  29. #30 demandabanana
    May 17, 2012

    “It’s a shame you and the doctor couldn’t do the same — to take time to listen to me or attempt to educate me.”

    I have a strong suspicion that anyone who attempts to “educate” this person or someone like her is likely to be met with harrumphs and incredulousness. Stop pretending there’s any possibility you’ll change your mind.

  30. #31 Mrs Woo
    May 17, 2012

    Dianne – trained people can spot autism signs in much younger children that the parents miss (either shrugging them off or focusing on other things) much younger than 15 months. As your post kind of points out, though, usually an untrained eye will miss them, etc., so when the parents have a child who is diagnosed with autism after they’ve started vaccines, the age at diagnosis plus everything that is published from the “it is teh eeevilll vaccines” crowd makes a lot of parents immediately say – “Why didn’t I listen? They were right!”

    I’m so relieved for the rational autism parents I find (they do exist).

    I can also understand eye-rolling and sighs from trained medical practitioners who have fifteen minutes to try to confront the propaganda with real evidence when the panicked parent has already been told to accept nothing from the government, nothing from published clinical studies, etc. If you take all proof away from the discussion and only appeal to emotion, they could spend half the day with that parent and the [i]best[/i] they could hope for might be “Well, I’ll think about that and make another appointment later if I decide I agree with you.”

    For one, they know the first thing the parent will do is go [b]back[/b] to the same sites they were already “researching” on, and/or Google to see how “reliable” the evidence shared by the doctor was, and end up drawn even deeper into the “autism/allergies/autoimmune disorders are all caused by vaccines” rabbit hole.

  31. #32 JGC
    May 17, 2012

    It would give them someone to blame and validate tht they are no responsible–they could point to their pediatrician, the AMA, the CDC, etc. and say “You made me to do this! You promised it was safe! It’s all your fault!” More than that, I think it would satisfy a need for the world to be a much less scary place.

    After all, in a world where bad things can happen for no reason, no way to stop them and with no one to blame, there’s nothing anyone can do to make sure bad things won’t happen to me someday…

    Can’t have that.

  32. #33 Science Mom
    May 17, 2012

    I too am baffled by Ms. McNeil’s inability to send the letter to her paediatrician. Could it be because it is pure hyperbole and fabrication and she would be seen as the loon she is if she sends it using her name?

    Frankly, the ignorance and back-patting on that blog are nauseating and makes me embarrassed for my gender. They have deluded themselves into thinking their public bluster and referring to their children as broken is some kind of public service. All I see are perpetually angry, pathetic, unproductive women who de-humanise their own children. AutismOne should be quite the fap fest.

  33. #34 Todd W.
    May 17, 2012

    @Dianne

    Another sign that was mentioned on the news this morning (so, take with a grain of salt…haven’t had a chance to look for the actual study), is that by about 6 months of age, there are signs that can be picked up on as potentially indicative of autism. One that was featured was head lagging. This is where if the baby is lying on their back and you pull them up to a sitting position by their hand, their head remains hanging for much longer before they finally bring it up and focus on you.

    Here’s the story.

  34. #35 Melissa G
    May 17, 2012

    24
    She “claims” that her son was perfectly “normal” until he was given his MMR, DTaP and Hib vaccines at 15 months of age. Within 1 month she had brought him to a developmental pediatrician who diagnosed him with autism.

    What symptoms of autism can a baby under 15 months even show?

    Posted by: Dianne | May 17, 2012 12:12 PM

    I don’t know about her, but my child has shown signs of general out-of-the-ordinariness since birth. Honestly. He was excessively cranky, and showed fussiness when out in public, fussiness that I now recognize as symptoms of sensory processing difficulties. So, when did I have him evaluated for autism? Not until he was four and about to go to school. Why, you might ask? Well, because the ways in which he interacts with the world run strongly in my family, and I did not notice there was anything out-of-the-ordinary about it! It was my mother-in-law who urged the testing.

    I’ll bet you a lot that many of these women thought their child was perfect because autism runs in their family, and they don’t even realize it.

  35. #36 Dianne
    May 17, 2012

    I seem to think that there are differences in head growth in autism as well, maybe smallish head at birth but quick growth so that the head circ is usually large in early childhood (I could have that wrong). But these aren’t symptoms, that is, things that patients or parents notice and bring to the attention of physicians, but signs.

  36. #37 Spam on Edge
    May 17, 2012

    I’m eager to know what you make of that italian ruling Orac? Are you going to treat it or ignore it?

  37. #38 Dianne
    May 17, 2012

    Alison, who is a psychiatric social worker,

    If I were her boss and saw this I would fire her immediately for cause. A psychiatric social worker should NOT be referring to a developmentally disabled child as “broken”. Ever. Saying “You stole my child’s future” is beyond the pale too. A disabled person has a future. It’s too soon to even say what that future will hold, but the child is autistic, not dead. I would not trust this woman near someone with a psychiatric disorder: she clearly holds them in contempt and is unlikely to be in the least helpful to any person seeking help for their psychiatric issues.

  38. #39 Todd W.
    May 17, 2012

    @Dianne

    IIRC, there are, indeed, some physical difference (slightly larger head circumference, ear length, finger lenght, etc.), but they are fairly small, and without having a basis of comparison to actually see, I wouldn’t expect any parent to pick up on them.

  39. #40 lilady
    May 17, 2012

    @ Todd W: I heard about that study on last night’s TV evening news:

    http://www.kennedykrieger.org/overview/news/new-study-shows-simple-task-six-months-age-may-predict-risk-autism

    When both of my babies (born 1970 and 1976), went to the pediatrician they were evaluated for “head lag” while on the examining table. My babies were also put on their stomach to evaluate their abilities to lift their heads. Note that the study identifies this head lag “test” has been a part of the work-up for early identification of children with cerebral palsy (floppy baby).

    I thought that every pediatrician still tests every baby for body tone during early infancy “well baby” visits.

  40. #41 BA
    May 17, 2012

    @Prometheus

    I’m not disputing that there are very similar numbers of persons with disabilities overall. That’s why I noted diagnostic substitution. Just there are more people with autism than we previously thought and we SHOULD give it more attention/resources than we did when it was thought to be a low incidence disorder. And, that is why some people want to stick to calling it an epidemic. Again, I’m not agreeing that it is an epidemic per se but it is more important than we thought it was. It is being dismissive of the fact that autism is a pressing societal concern that I am raising as an issue. I don’t think that is the intent of Orac or others that speak pejoratively of the “autism epidemic” but it makes it seem as if we don’t think that autism is a big deal when we are ignoring the fact that there are alot more people out there that could benefit from appropriate educational and clinical intervention. And, I feel that too few resources are geared towards all persons with disabilities. If we don’t attempt to maximize independent functioning then we, as a society, will end up having to throw more resources to care for these people at later ages.

  41. #42 dreamer
    May 17, 2012

    Denice #17 : “I look at anti-vax ( or more precisely vaccines-cause-autism) blogs as feeble and mis-guided attempts at group therapy for distraught parents.”
    ” However, buying into alt med mythology keeps them from finding REAL therapeutic solutions for both themselves and their child: it takes them farther away from acceptance.”

    The consequences of lack of (real) science education, zero knowledge of the (documented) facts of history, zero exposure to the (cruel) natural life-events such as disease and infant mortality are dire.

    It pains me that today here in my beloved America we are faced with such a total abandon of ideas of The Enlightenment We see it in politics, with one party refusing to acknowledge ecological destruction, the other party ignoring it. We see it in medicine, with a troubling lack of brain cells when it comes to knowing how disease wrecks havoc and an astonishing lack of appreciation for the tools that science (and freedom from religion) gave us.

    I put those under the heading, “The Tyranny of Good Intentions.” There is a book by that name, it strikes me as appropriate for a lot of cases.

    I do wonder how often, or if, these un-scientific people live up to their own code. We have heard of a few examples, such as the religious parents prosecuted for refusing treatment for their child.

    But I have not heard of Mike Adams refusing ANY help from modern medical science. I wonder how many of these anti-vaccine nuts benefit from modern medical advancements. I wonder how many would gladly watch tens of thousands suffer and die in in epidemic.

  42. #43 kruuth
    May 17, 2012

    This woman is one of the main reasons my dad and his call group no longer deal with pediatric cases. I’ll offer up a counter based on my discussions with him and has fellow doctors:

    Dear Ignorant Parent:

    We are well aware that you pulled your child out of our practice, since we’ve seen a marked decrease in the volume of ignorant questions that our nurses have had to answer as of late. Trust us, you won’t be missed.

    Will we lose an ounce of sleep over you deciding the vaccines are wrong for your child? No. However, if your young, and unvaccinated little one comes down with measles, mumps, whooping cough, polio, or rubella then we would wager that you will. We’ve treated all of them in our tenure as doctors and be assured, while modern medicine can reduce the risk to your child after infection, the results can still be daunting.

    Blindness, paralysis, deafness, and even death are some of the results of not vaccinating your child from diseases that once killed millions around the world. By not allowing us to vaccinate you are saddling your child with plenty of risks, none of which he should or need bear.

    We all understand that the internet is a treasure trove of information. The problem with that is that not all the information is correct. Certainly you can find information claiming vaccines cause autism and a host of other developmental problems. Guess what else you can find? People that believe the earth is flat and that nobody has ever been to the moon. You claim there’s evidence to support your claim? How nice. So do the people that believe the earth is flat. A cursory internet search on vaccines being bad does not make you an expert. Years upon years of medical training does, and that learning process is ongoing.

    If you thought we were curt with you when you started asking these questions then it’s most likely because we’ve been inundated by questions from you. Asking the same thing a hundred times but slightly changing the wording isn’t going to get you a different answer. You decided long ago that vaccines were evil and now you simply want to try to get us to go along with you. We aren’t going to. When we rolled our eyes at you for citing a study that was twenty years old it was because there was twenty years of newer information that supported our point of view.

    Your claims that we broke your child are ludicrous. When you showed us an outdated study that linked autism with vaccination we showed you a dozen that did not. Our data was somehow tainted in your mind because you believe that we’re all in the pocket of some shadowy conspiracy group. We aren’t. Your claims that we’re running a business and that we make money off vaccinations are also completely unfounded. Be assured that treating a child who has contracted the mumps is going to be a lot more lucrative than simply vaccinating against it. Yet, that’s what we do. The Hippocratic Oath says do no harm, you like to say that, but there is another important part of that oath you missed, where is states that prevention is preferable to cure. In our tenure as medical professionals we have come to believe in that statement after treating scores of children permanently harmed by diseases the should never have been stricken with but for their parent’s misguided good intentions.

    We wish you the best of luck with your family and hope only for the best for you all. We also hope nothing bad comes of your decision.

  43. #44 lilady
    May 17, 2012

    Here’s an assortment of infant growth charts that plot on graphs, an infant’s length, weight and head circumference.

    http://www.cdc.gov/growthcharts/clinical_charts.htm#Set2

    Apparently the AAP recommended that pediatricians use these charts for every child ~ mid 1980s.

  44. #45 AllieP
    May 17, 2012

    I agree that diagnoses of autism should come with parent counseling. If my child were diagnosed, I’d need all the sane info I could get. Do not send me home, where all I can find is Google!

    I have no idea what pedi this woman goes to or where she lives, but in my area (suburban DC), the pedis are INSANE about autism. Since her 12 month check up, my daughter’s doctor visits are punctuated with “developmental” questionnaires and forms i have to repeatedly fill out which can ONLY be early screening tools for autism — they ask about her speech, about her ability to maintain eye contact, about her emotional development, about whether or not she plays with “unusual toys” — I think the example given was taking a screwdriver to bed instead of a stuffed animal — if she exhibits any repetitive motions, if she seems particularly sensitive to lights/sounds/etc. It’s all autism screening all the time.

    It may be a product of my area, though. We have great early intervention programs in my county, and a strong current of crunchy anti-vax types. When the pertussis and measles threats were stirring around, I was trying to ask the pedi how soon my newborn could get her measles vax, and my “I have a questions about her measles vax” statement to my pedi quite obviously raised his blood pressure — I think he must get it all the time from folks who have been miseducated by Dr. Sears.

    Then, when he found out I was asking if she could get it early, he looked so relieved/amused (while telling me no, that she wouldn’t mount the correct response), that I was pretty sure I was water cooler fodder.

    Maybe I’m the only mom in the practice whose vaccine rallying cry is “not as many as I’d like, not soon enough.”

  45. #46 Rob
    May 17, 2012

    It’s always easier to blame someone else for everything. But what angers me the most is when Mama Mac concludes:
    “You took a healthy baby boy and by 18 months you left me with a yard sale of medical problems and neurological damage.”
    I can’t imagine anyone describing their child’s condition as an inconvenience the way this woman does. Further proof that this lady shouldn’t be raising kids.

  46. #47 brian
    May 17, 2012

    Continuing with signs that children who go on to develop ASD are already neurologically different from their typically-developing peers at a young age:

    At 1 month, children with ASD but not control children had
    persistent neurobehavioral abnormalities and higher incidences of
    asymmetric visual tracking and arm tone deficits. At 4 months, children
    with ASD had continued visual preference for higher amounts of
    stimulation than did control children, behaving more like newborns.

    http://pediatrics.aappublications.org/content/early/2010/08/02/peds.2009-2680.full.pdf+html

    Of course it’s already been clearly demonstrated that children who, like McNeil’s son, regress after a period of apparently normal development follow an abnormal brain growth trajectory from an early age; Some researchers, such as Eric Courchesne of UC San Diego, have presented data that support the idea that this is evident at (and therefore apparently begins before) birth, while a large study from David Amaral’s group at UC Davis recently demonstrated that the abnormal growth trajectory of the brains of children who clearly regress into ASD can be detected at least from 4 to 6 months of age–long before children like Nick receive their MMR.

  47. #48 JGC
    May 17, 2012

    So if it’s present at and begins before birth, and it’s detectable long before the children recieve their first immunizations, their autism must be caused by all the toxins in the vaccines their parents were given as children–right? It’s still too many too soon–a whole generation too soon.

    /sarcasm

  48. #49 ImaginesABeach
    May 17, 2012

    I got an e-mail today from my daughter’s school, telling me of a pertussis outbreak and suggesting I make sure my children’s vaccinations are up to date. How much do you want to bet they will be flooded by e-mails from non-thinking moms?

  49. #50 Todd W.
    May 17, 2012

    @JGC

    You’re joking, but I have actually heard that argument as a serious proposal.

  50. #51 Todd W.
    May 17, 2012

    @ImaginesABeach

    Probably pretty high. I would recommend sending those parents to web sites like http://www.soundsofpertussis.com. I also have a recent post up on my blog (linked in my name) with sound clips and video of patients with pertussis. Might change a few minds.

  51. #52 Darwy
    May 17, 2012

    She is a bitter woman who hates her child, IMO. The way she talks about him as though he was a broken doll she needed to throw out in the garbage is absolutely sickening.

    The ‘study’ she refers to citing 80% of ASD children have a mitochondrial disorder had a whopping 10 ASD children enrolled in it. It makes for an interesting pilot study, but it lacks any sort of statistical power with a sample size that small.

    Furthermore, even if the number holds true and her son has the same ‘type’ of mitochondrial disorder as Hannah Poling, he’d would still be in the same boat – the first strong fever would trigger it (all those ear infections, etc).

    She’s a bitter woman because there’s something wrong with her son, and she cannot accept that there’s no one to blame other than genetics.

  52. #53 Science Mom
    May 17, 2012

    @BA

    Just there are more people with autism than we previously thought and we SHOULD give it more attention/resources than we did when it was thought to be a low incidence disorder. And, that is why some people want to stick to calling it an epidemic. Again, I’m not agreeing that it is an epidemic per se but it is more important than we thought it was. It is being dismissive of the fact that autism is a pressing societal concern that I am raising as an issue. I don’t think that is the intent of Orac or others that speak pejoratively of the “autism epidemic” but it makes it seem as if we don’t think that autism is a big deal when we are ignoring the fact that there are alot more people out there that could benefit from appropriate educational and clinical intervention.

    I and I know most or all here can appreciate this sentiment but perhaps this will clarify things a bit. Our host is primarily concerned with the anti-vaxx claim of autism aetiology which is, of course, vaccinesdidit. And refuting the pseudo-scientifc claims by its proponents because he is a scientist/physician. So it is not a dismissal of the apparent rise in ASD prevalence that you suspect but rather the use of a loaded term used by the anti-vaxxers which has a double meaning, that of an increase over and above what is expected and also that they view autism as an anthropogenic disease.

    There are simply other blogs that specialise in the concerns you raise such as Leftbrain/Rightbrain, Neurodiversity, I Speak of Dreams and Thinking Person’s Guide to Autism. I’m right on board with you about the challenges that face autists and their parents particularly in a time that we are seeing drastic budget cuts to educational, vocational and living programmes all over the country. I hope this makes more sense to you.

  53. #54 JGC
    May 17, 2012

    I’ve heard it as well. To the anti-vax cohort it is now and forever shall be always and only all about vaccines.

    If it were suddenly discovered that tachyon bombardment en utero could cause autism, IAoA and NVIC would soon begin telling us how Big Pharma had been deliberately putting extra tachyons in their vaccines all along, just so they could charge more for them.

  54. #55 Calli Arcale
    May 17, 2012

    In particular, the “vaccinations given to pregnant moms” argument is used to explain why the unvaccinated siblings of some autistic children turned up autistic anyway.

  55. #56 Roger Kulp
    May 17, 2012

    Pareidolius@22,demandabanana@28,brian@45 and others.

    It can’t be said enough,that most antivaccine parents don’t want to know a real cause,most likely genetic,for their children’s autism,and comorbid medical issues.In part because it would completely blow away their fantasies of a “perfect” child.But there is another reason.

    I know all too well what it’s like to live with both autism,and a “yard sale of medical problems”,and not find the cause until well into adulthood.Like autism itself,this is not new stuff,although the fact we are learning the causes of it all,IS fairly new.

    As an autistic diagnosed,as an an adult,with a couple of these “new” metabolic diseases now known to be associated with autism,I can tell you what happened thirty,forty years ago if a doctor confronted one of these patients.They would sit there,and shake their heads,and say they could not figure out what was going on.

    They would look at the autism,or whatever other neuropsychiatric problem the child was (mis)diagnosed with,and say the child was somatizing because of the autism or other “psychiatric” diagnosis.Even if you were nearly dead in the ER from metabolic organ failure.

    I know,I was there.It doesn’t do much good to have a doctor sit and apologize to you,for something another doctor did thirty years earlier,when the science wasn’t there.

    If “Mama Mac’s” son has anywhere near the medical issues I have had,I would be willing to wager he has either some kind of metabolic disease,or some other genetic condition,like Dravet Syndrome,the doctor was not aware of.It is still very difficult to get tested for these diseases.

    Someone like “Mama Mac” does not want to know people like me even exist.It’s bad enough,for antivax parents,to know that there are autistic adults out there,who are as old,or older,than they (the parents) are is bad enough.But to suggest that some of these adults may have lived all of their lives with just as many,or even more oddball medical problems,of the same kind that “their kids” have,is something that they could never accept.I would be the ultimate nail in their coffin.

  56. #57 Autismum
    May 17, 2012

    Just a little reminder that not all mams with autistic kids are barking mad reality divorcees.
    A factor that also pushes the guilt buttons is the fact that, when you read about autism and when you get a diagnosis, early intervention is emphasised. “the earlier the better” is a mantra one hears alot. These parents already feeling guilty that they may have missed even subtle signs that their child wasn’t developing normally, fear having missed an opportunity to “save” their child. To assuage the guilt the erase the little nagging doubts they had or the little bumps in development and turn their child’s autism into an event. These parents would have us believe, in line with their oft state narrative, their child was on course to be some kind of genius, already with refined social airs and graces and superb conversational skills. They go from having the best kid in the world ever to being stuck ” with a yard sale of medical problems.” No child anymore – just stuff to be disposed of. Sorry if this is ranty but this kind of stuff sickens me.

  57. #58 Denice Walter
    May 17, 2012

    Yes, there are early indicators and new studies are being done ( as JGC, Todd , Melissa and brian show): here’s a sampling-
    early differences in gaze patterns and social precursors- like reaching out, response to name; physiognomic indicators- head size and internal facial proportions; brain- white matter, greater number of PFC cells, brain wave patterns; genetic).

    I would also expect differences in early (pre) verbal and non-verbal communication to be illustrated in many other ways and perhaps motor patterns as well ( kids later diagnosed as schizophrenic exhibited discernable differences in motor co-ordination on review of early videos that parents kept).

  58. #59 Autismum
    May 17, 2012

    There can also be facial differences in many autistic children – noses tend to be a little flatter, eyes further apart and ear slant slightly back and are lower on the head than typical children. There is a group of researchers (project still at the proposal stage) in the UK wanting to investigate problems with depth perception in autistic children which ties in very much with the point Denice made on motor development.

  59. #60 Denice Walter
    May 17, 2012

    @ Science Mom:
    @ Autismum:

    I share your sentiments about fapping and self-grandisement, respectively.

    I at first hesitated highlighting these women- I DO feel sorry for them- *however* they can wreck havoc by mis-educating others. Pseudo-science travels quickly by blog, facebook and tweets: writing these epistles is irresponsible. Also, this sort of mis-guided feminism gives me the shivers. Women have fought hard to be taken seriously as educated adults and here we are confronted with past-due adolescent fantasy-based rebellion masquerading as post-modern criticism. That *is* what it’s supposed to be, isn’t it?

    @ dreamer:

    I think about the Enlightenment and sometimes fear that we are its bitter end… hanging on for dear life.
    Don’t worry, we’ll get by somehow.

  60. #61 Grant
    May 17, 2012

    This post is incredibly timely for me. I’ve been trying to add polite suggestions to a Facebook page about local coverage of whooping cough on a current affairs program. (They did a pretty good job. My first comment on the Facebook page is here: http://www.facebook.com/closeup/posts/10150924174162268?comment_id=23162089&offset=0) The parents writing there display similar attitudes as you describe in your article, although their focus is not autism but the whooping cough vaccine. “Of course” the likes of Suzanne Humphries are now trying throw mud at me. *Sigh*

  61. #62 lilady
    May 17, 2012

    @ Grant: Some of the “RI Regulars” do post on Facebook…I don’t. Other “RI Regulars” post on the Ho-Po and the Shot of Prevention blog:

    http://shotofprevention.com/category/parent-perspective/

    Feel “free” to get arm yourself with the links provided on Shot of Prevention. Here is another great website about the recommendation for Tdap vaccine for pregnant women, partners, grandparents, older siblings and health care providers who will…or anticipate they will, have contact with an infant under 1 year of age. It’s the principle of “cocooning” to protect babies who have not completed their primary infant series of TDaP vaccines:

    http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6041a4.htm

  62. #63 Warwick
    May 17, 2012

    “Adverse events reported during post-approval use of Tripedia vaccine include …”

    Correlation does not imply causation. If event A is followed by event B, that is NOT evidence that A caused B. To believe that it does is the definition of superstition.

    The US had 4,131,019 live births in 2009 [1]. About 1 in 100, or 40,000 of them will have some sort of ASD, at current estimates. That’s over 100 diagnoses per day.

    The US vaccination schedule has about 25 vaccinations in the first 12 months [2].

    If we assume 90% of children get these vaccinations, that’s 82,620,380 vaccinations per year, or about 330,500 per working day. And that’s not counting vaccinations given to older children and adults. Around 150,000,000 flu vaccinations are given each year in the US. With that number of vaccinations being given to that many children, very rare events, which are completely unrelated to the vaccines, will happen soon after the vaccines many times.

    For example, in the US, over 100 people are killed, and around 1000 injured each year by being struck by lightning [3,4]. With hundreds of millions of vaccinations per year, we would expect that some people would be struck by lightning within hours or days of being vaccinated. The correlation does not imply causation. The fact that a rare event follows a vaccination is not, by itself, ANY reason to suspect that it was caused by the vaccination. Given the number of vaccinations being given, rare correlations will happen all the time.

    Autism spectrum disorders, in contrast, are not particularly rare; at around 1 in 100, an autism spectrum disorder diagnosis is thousands of times more common than being struck by lightning. It will sometimes follow a vaccination (or any other event you care to name) without the need for any causal connection.

    The only way to know if an event that followed a vaccination was caused by that vaccination is to look statistically at very large numbers of people and look for statistical correlations. When such population wide studies are done, the claimed vaccine injuries are not found to be related to vaccines. “My child got xyz following a vaccination” is not evidence of cause and effect.

    [1] http://www.infoplease.com/ipa/A0005067.html

    [2] http://www.cdc.gov/vaccines/recs/schedules/downloads/child/0-18yrs-11×17-fold-pr.pdf

    [3] http://www.uic.edu/labs/lightninginjury/Disability.pdf

    [4] http://www.vaisala.com/Vaisala%20Documents/Scientific%20papers/Annual_rates_of_lightning_fatalities_by_country.pdf

  63. #64 Denice Walter
    May 17, 2012

    @ Grant:

    You might want to sling some mud yourself: Dr Humphries was a guest on Monday’s Progressive Commentary Hour ( the show is archived for posterity @ Progressive Radio Network.com), appearing amongst other female luminaries of that rarist of categories- physicians who oppose vaccinations ( w/ Drs Tenpenny, Banks and Nass). With very few exceptions ( and those are either unaware or are there to challenge pseudo-science), guests at this outlet are no-holds-barred cranks.

  64. #65 Grant
    May 17, 2012

    lilady,

    Actually, it’d be better for me if someone else could chip in! – I’m flat out, working well into the wee hours each day. What I get for posting a very general point; way too much fuss in reply… *Sigh* (In particular the “usual” attempts to insinuate that I’m attacking people, etc. grate.)

    Thanks for the links, might cut’n'paste them as “food for thought” when I’ve time. FWIW, I’ve written about “cocooning” myself a little while back (somewhere on my blog) when a local journalist quoted an anti-vaccine proponent.

  65. #66 BA
    May 17, 2012

    @ ScienceMom

    Again, I do not feel there is intent to be dismissive of the needs of persons with autism here but the anti-vaxers are not the only ones to use that term. I appreciate this blog (longtime reader) and regularly have read LB/RB and ND.

  66. #67 Grant
    May 17, 2012

    @Denice – just so you don’t read me wrongly, my last comment crossed yours.

  67. #68 adelady
    May 17, 2012

    I did like the stickers the McCafferys designed. See towards the end of http://www.abc.net.au/catalyst/stories/3505097.htm .

    The child health record books that every family gets now have a bright yellow sticker on the front reminding people to ensure that parents, grandparents, siblings and carers are all up to date with their pertussis vaccinations.

    Personally, I’d like to see these things done as a sign for the reception/entry areas of all maternity hospitals. With an addition. If your vaccinations aren’t up to date, either wear a mask or don’t come in.

    And that poor mother lives with the _guilt_ she feels about having taken her newborn to her older child’s school. And the baby died a few days later. All because she moved to an area with below par vaccination rates.

  68. #69 Sid Offit
    May 17, 2012

    @kia

    In regards to the former celeb, Mandy Peet, I have renounced all vaccines until the 3rd world gets their “fair share.” After all, I don’t want to be selfish.

  69. #70 Hinterlander
    May 17, 2012

    @adelady #66: did you read the comments below that article? Yikes.

  70. #71 lilady
    May 17, 2012

    @ adelady: Dana was a beautiful baby who died of pertussis in spite of intensive care, including ECMO.

    The McCaferrys and their loss were featured on Australian television and were harassed by Meryl Dorey and other anti-vaccine loons. I give them a lot of credit for speaking out and for their advocacy to dispel the pseudoscience associated with immunizations.

    I agree with you 100 % about protecting babies from the ignorant lunatic anti-vaccine fringe groups. Getting vaccinating is what we do for ourselves…and what we do for babies and other vulnerable populations.

  71. #72 Denice Walter
    May 17, 2012

    Please don’t shoot me, I’m only the messenger….

    As if there isn’t already enough nonsensical misinformation about vaccines wasting electrons and endangering lives, there is a new website/ foundation called Focus Autism,Inc ( see focusautisminc.org) whose executive director is Louise Kuo Habakus. I thought that she has been awfully quiet lately.

  72. #73 Amenhotepstein
    May 17, 2012

    Sid,

    I think you should also renounce all food until starvation in the 3rd world is eliminated. Please keep us posted on the success of your campaign!

  73. #74 lilady
    May 17, 2012

    @ Denice Walter: focusautisminc.org has big time benefactors; Barry and Dolly Segal:

    http://hosted-p0.vresp.com/1092045/203d6165c9/ARCHIVE

    This foundation has done a lot of good work in Africa, but Barry and Dolly are “way off” getting involved with this group. Apparently they are a sponsor of Generation Rescue, as well.

  74. #75 Thistleblower
    May 18, 2012

    “The McCaferrys and their loss were featured on Australian television and were harassed by Meryl Dorey and other anti-vaccine loons. I give them a lot of credit for speaking out and for their advocacy to dispel the pseudoscience associated with immunizations.

    I agree with you 100 % about protecting babies from the ignorant lunatic anti-vaccine fringe groups. Getting vaccinating is what we do for ourselves…and what we do for babies and other vulnerable populations”.

    No wonder there is anger out there, when this rubbish is spewed out simply because someone disagrees with you. Don’t like vaccinations? Ask lilollady,she’ll tell u: you’re just an ignorant lunatic.If speaking what you believe makes you an ignorant lunatic, count me in.

  75. #76 Adam
    May 18, 2012

    @kruuth I really like your letter. I think it should receive a wider audience.

  76. #77 Renate
    May 18, 2012

    @ Thistleblower
    It’s not about someone disagreeing, but about someone spreading ignorant nonsense and endangering other peoples health.

  77. #78 Julian Frost
    May 18, 2012

    Thistleblower, do you know anything about the McCaffery’s and about the actions of Meryl Dorey, the head of the misleadingly named Australian Vaccination Network?
    After the McCafferys went public with their story, Dorey spoke up and publicly questioned the diagnosis of pertussis. She sent letters to the McCafferys and attempted to access Dana’s Medical Records.
    Seriously.
    Dorey harassed a grieving family, questoned a diagnosis and tried to get hold of confidential medical data. All because she is so anti-vaccination that she didn’t want to admit that vaccination could have saved Dana’s life. “[I]gnorant lunatic anti-vaccine fringe groups” is not rubbish, it’s accurate.

  78. #79 nastylittlehorse
    May 18, 2012

    @73 “If speaking what you believe makes you an ignorant lunatic”

    If what you believe in is ignorant lunacy, then yes, absolutely!

    “Don’t like vaccinations?” fits the bill quite nicely when you spend a significant amount of effort using your dislike of them to dissuade others from using them, putting them, their children and third parties all at risk of serious illness.

  79. #80 Catherina
    May 18, 2012

    @kruuth and Adam (74) – I agree (see link under my name to blogpost with kruuth’s letter)

  80. #81 novalox
    May 18, 2012

    @thisleblower

    At least you admit that you are an ignorant loon, that at least is a first step.

  81. #82 Adam
    May 18, 2012

    @Catherina thanks for that, it’s worth it

  82. #83 Denice Walter
    May 18, 2012

    @ lilady:

    If you scan Focus Autism’s site, you’ll notice that amongst the worthy causes ( educational and medical) are: NVIC, Generation Rescue, NVIC, SafeMinds and the Center for Personal Rights… that last one is Kuo Habakus’ own project.

    The site’s information sources include NVIC, BLF on a TV show ( video), Viera Scheibner and Dr Sears’ alternative vaccine schedule. Also see their mission statement.

  83. #84 emilyhallnyc
    May 18, 2012

    I’ve been dithering for a few days about posting this.

    I couldn’t disagree with Alison more: I am completely provaccine. (I had a child seven week premature, and who now has asthma, inherited from his father. The idea of him having petussis chills me to the depths.)

    Alison and I were friends as children; we lost touch in our early thirties, around the time her son was diagnosed. She was kind, funny, smart, hardworking, and also reasonable. I thought of her as one of my most reasonable friends, good to talk to, measured, thoughtful. So to see her brought to this point is heartbreaking. I can’t imagine the depths of unhappiness that have done it.

    Again, I completely disagree with her, and I wish to holy hell she would stop encouraging others. But I’m still tremendously saddened whenever I read something like this.

  84. #85 Prometheus
    May 18, 2012

    BA (#39):

    “I’m not disputing that there are very similar numbers of persons with disabilities overall. That’s why I noted diagnostic substitution. Just there are more people with autism than we previously thought and we SHOULD give it more attention/resources than we did when it was thought to be a low incidence disorder.”

    I would argue that we should simply shift the resources that used to be allocated for “mental retardation” to “autism”. The point is that the data show no “shift” in the nature or severity of disability – only the names have changed. Why would the amount of resources needed be different if the only change is the name of the diagnosis?

    “And, that is why some people want to stick to calling it an epidemic. Again, I’m not agreeing that it is an epidemic per se but it is more important than we thought it was.”

    Again, calling it an “epidemic” is misleading, since these are the same people – often quite literally the same people – who were called “mentally retarded” in the past. The only “epidemic” appears to be an epidemic of label switching.

    Whether or not their condition is better described by the label “autism” is moot – their needs are not changed by simply changing the label. If that were possible, we could “cure” autism by labelling it as “neurotypical”.

    “It is being dismissive of the fact that autism is a pressing societal concern that I am raising as an issue.”

    At the risk of being repetitive, what is it about changing the label from “mentally retarded” to “autistic” that is a “pressing societal concern”? It’s the same proportion of the population as before, just with a different proportion of “autistic” labels. We can argue whether “society” provides enough resources for people with developmental disabilities, but it seems disingenuous to argue that calling someone “autistic” instead of “mentally retarded” materially changes their needs or their impact on society.

    “I don’t think that is the intent of Orac or others that speak pejoratively of the ‘autism epidemic’ but it makes it seem as if we don’t think that autism is a big deal when we are ignoring the fact that there are alot more people out there that could benefit from appropriate educational and clinical intervention.”

    I can’t speak for Orac or anyone else, but I do intend to “speak pejoratively” of the “autism epidemic”, primarily because the data don’t show that it exists. And the issue of “appropriate” interventions is a bit of a “red herring”, since no interventions have been yet shown to be uniquely helpful in autism. In fact, the interventions that “work” in autism are pretty much the same ones that “work” in all developmental disabilities.

    “And, I feel that too few resources are geared towards all persons with disabilities.”

    And this is why I bother to object to the use of the term “autism epidemic”. Calling something an “epidemic” implies that the prevalence is rapidly increasing, which in turn diverts resources toward finding the “cause” of said epidemic. If, in fact, all that is happening is the transfer of people from one category to another, there isn’t an epidemic and, therefore, no need to waste time, money and other resources on a fruitless pursuit of “the cause”.

    Prometheus

  85. #86 Calli Arcale
    May 18, 2012

    Prometheus:

    Why would the amount of resources needed be different if the only change is the name of the diagnosis?

    That question only makes sense if adequate resources were being spent on them before. I don’t see where you established that. You established they were diagnosed, not that they were receiving adequate supports.

  86. #87 lilady
    May 18, 2012

    @ Thistleblower….Got any scientific information to back up…what you *believe* about vaccines?

    “Don’t like vaccinations? Ask lilollady,she’ll tell u: you’re just an ignorant lunatic.If speaking what you believe makes you an ignorant lunatic, count me in.”

    Okay, I’m “counting you in” as an ignorant lunatic and “counting you in” as part of the lunatic anti-vaccine fringe groups.

  87. #88 bad poet
    May 18, 2012

    @lilady,

    As a registered nurse, you have my respect and a lot more knowledge than I do.

    Could you (or anyone else) please tell me what an unformed bowel movement would have to do with autism spectrum disorders? I have been under the belief that bowel movements are a necessity of life.

    In my opinion, that person really hates her child. I would call the police *and* the department of child and family services. The child needs protection, and the mother needs serious psychiatric help.

  88. #89 lilady
    May 18, 2012

    @ bad poet:

    “Could you (or anyone else) please tell me what an unformed bowel movement would have to do with autism spectrum disorders? I have been under the belief that bowel movements are a necessity of life.”

    I think that Alison MacNeil *may have* provided that answer in her *rant* directed at her child’s pediatrician:

    “When I told you I had put Nick on a gluten free/casein free diet and his horrific diarrhea had decreased by 50% and he had started putting two words together you tried to dissuade me from continuing. You said “but food is social and these kids are too isolated already”. Let me tell you, there is nothing social about chronic acidic diarrhea. You called it “Toddler Diarrhea” and told me I gave him too much juice. We gave him no juice. It was Clostridia that you had failed to diagnose. And the condescending CYA (cover your ass) note that you wrote in the chart about ‘mom not following your advice’ was a nice touch too. Following your advice not to try new bio medical interventions to heal my sick and injured baby would have had far more toxic results than anything we have tried.”

    *I wouldn’t rely on anything that MacNeil posts…with her history of blatant lies*

    Often C. difficile infections, *appear* after repeated courses of antibiotics due to the overgrowth of this bacterium in the digestive tract.

    http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/infectious-disease/clostridium-difficile-infection/

    Her son, might have contracted any number of viral, bacterial or parasitic illnesses that could cause *unformed bowel movements*…including Norovirus, C. jejuni or Cyclospora infections:

    http://www.cdc.gov/Features/Norovirus/

    http://www.cdc.gov/pulsenet/pathogens_pages/campylobacter_jejuni.htm

    http://www.health.ny.gov/diseases/communicable/cyclosporiasis/fact_sheet.htm

    There are other viral, bacterial and parasitic infections as well, that are readily passed amongst young children. After all, children and their caretakers are notorious for passing on these bacterial illnesses. The important thing to remember is to have the patient submit three consecutive days’ stools to a laboratory to test for these bacterial or viral illnesses…and three consecutive days’ stools to test for Ova and Parasites.

  89. #90 lilady
    May 18, 2012

    @ bad poet: I have a comment stuck in moderation…too many links, I believe. Just be patient, until our esteemed leader can check the moderation hopper. :-)

  90. #91 Paul
    May 19, 2012

    I want to reply “your child is not broken, or autistic. He is a boy.” single mums should (in many cases) simply not be permitted to attempt to raise boys.

  91. #92 lorimakesquilts
    May 19, 2012

    I have a great deal of sympathy for parents of autistic children or of any child who has a condition with an unknown cause. My nephew has a genetic disorder that is extremely rare and it’s even rarer for children to come to term, much less survive any length of time past birth. It took over a year to pin down the reason behind all his issues. And even then my brother and sister-in-law went through a lot of anguish thinking it was somehow their fault (it wasn’t).

    I think that’s what’s going on with the “vaccines cause autism” crowd. They’re so desperate to find that cause, especially if it’s not their genes or their actions during pregnancy or afterwards, that they will grasp at anything, no matter how tenuous. And then of course the internet takes over and it’s a runaway train for every mother out there that is just looking to be outraged about something or feels they must somehow prove she is a “good” mother.

    That said, letting your emotions get in the way of rational thinking when it comes to your children’s health is irresponsible.

  92. #93 adelady
    May 19, 2012

    Denice “the diagnosis of autism came as a slap in the face to parents who may have had grandiose dreams for their children involving educational and occupational supremacy.”

    It occurred to me that some of these parents are into what I call “competitive parenting” – and it has some odd consequences that might go some way to explaining weird utterances like “You took a healthy baby boy and by 18 months you left me with a yard sale of medical problems and neurological damage.”

    I recall a friend who had a child who was very intelligent and talented in other ways. The way this woman talked you’d think the only problem this child would ever face, after framing the display of Olympic medals, would be to decide on whether to go for a Nobel Prize before or after winning a Pulitzer.

    However, her own style provoked seriously bad behaviour in her child at various times. At this point, we couldn’t possibly say that my child is a normal kid who reacts badly to parental pressure. No sirree, bob, no way. This child was the devil incarnate, dangerous to have in the house, all kinds of ludicrous over-stated complaints about how her child was worse than any other child she knew of. A bit like the ‘yard sale’ comment in the letter.

    I’ll admit that the child was a right royal pain, but the real problem was that the mother (dad was a lot more laid back) couldn’t tolerate the idea that her offspring wasn’t totally exceptional in every way. And I get some flavour of that from – “Your response was one lousy referral to Early Intervention.”

    In other words, how could you not see that my child was special and different from every other child you’ve ever seen or heard of or read about. If the pediatrician had oohed and aahed over how this child was an exceptional case – ‘never seen anything like this before’ – and we need to do lots of investigations and contact lots of experts in all sorts of interesting, exciting and rare possibilities, this type of competitive parent would have had something to brag about. Really important people in faraway places are taking an interest in my child. (The unspoken content being, your disabled child is not as special, interesting or exceptional as my disabled child.)

  93. #94 Roger Kulp
    May 19, 2012

    It is pretty much established that autism runs in families.Many autistic adults,or parents of autistic children,can look back at their own families,and see close relatives that would clearly be diagnosed on the spectrum,if they were children today.I know I can.

    I know there are all sorts of support programs for parenting of special needs children,especially parents of newly diagnosed children.Has anyone ever done a study to see how many parents of autistic children take advantage of these programs?

    My mother died recently,and I have done a good bit of thinking about both her,and parents of autistic children as a whole.Then it dawned on me,that this behavior we write about here may well be a sign of undiagnosed ASDs in the parents.The rigidity of thinking,the inability to change,and adapt to new ideas,the fact these parents may be socially isolated,and do not associate much with people outside of maybe a work environment,if at all.I know a lot of people with Asperger’s choose jobs where they don’t need to talk to people much,if at all.

    Has anybody else ever thought of this?

  94. #95 Chris
    May 19, 2012

    Paul:

    ” single mums should (in many cases) simply not be permitted to attempt to raise boys.

    Oh, good, Paul. I’ll just tell my mother-in-law that her son should have been taken away from her when he was ten because his father died.

    Do you say the same thing about single fathers and daughters? Because my mother died when I was eleven.

    One of the reasons we left the Republican Party was I got a call from and organizer that something had to be done about single parents (it was when Pat Robertson’s folks were taking over the caucus meetings). I asked them if they were going to make dying illegal.

    That kind of unthinking generalization from both Paul and those who want to legislate people’s lives (while also claiming to what “small government”) makes me angry.

    I have no idea who Paul was responding to, since I saw nothing about any of the “not so thinking mothers” being single, but it is a hot button issue with me.

  95. #96 Denice Walter
    May 19, 2012

    @ adelady:
    @ Roger Kulp:

    I have to walk on eggshells here because I’m not a parent**:
    I think that a certain percentage of parents can’t adapt and be realistic because they have issues of their own- perhaps lack of education, LD, ASD or *psychological* problems LIKE ANY OTHER GROUP you observe. Any population will have a certain amount of SMI, neuroses, problems of adjustment, substance abuse et al, just like, I’m sure, parents of kids with leukaemia run the gamut along several scales: variable intelligence, education, mental health, LD/ASD, emotionality, reality vs whimsy orientation, wealth.

    Even if the totals of *all* of these issues combined is 10% -that translates to thousands of outraged and un-realistic parents.

    ** a similar topic has gotten someone in *mucho* trouble with anti-vaxxers.

  96. #97 lilady
    May 19, 2012

    @ bad poet: I guess my rather long comment is permanently stuck in moderation because of too many links.

    If you *believe* anything that Alison stated in her *open letter* (rant) directed at her child’s pediatrician, she stated,

    “Over those three months we had been in the Emergency room, spent countless hours with On-call pediatricians and Sick visits for unrelenting ear infections, bronchitis, and endless rounds of antibiotics.”

    Further along she ranted,

    “When I told you I had put Nick on a gluten free/casein free diet and his horrific diarrhea had decreased by 50% and he had started putting two words together you tried to dissuade me from continuing. You said “but food is social and these kids are too isolated already”. Let me tell you, there is nothing social about chronic acidic diarrhea. You called it “Toddler Diarrhea” and told me I gave him too much juice. We gave him no juice. It was Clostridia that you had failed to diagnose.”

    Here is what caused her child to have “unformed bowel movements”:

    http://familydoctor.org/familydoctor/en/diseases-conditions/clostridium-difficile-infection.html

    As I see it, the child underwent multiple courses of antibiotic treatment which caused an overgrowth of Clostridium Difficile bacteria…which…believe it or not…is treated with different types of antibiotics to destroy the overgrowth of C. difficile bacteria to restore the normal balance of intestinal bacterial.

    (I’m not going to “link” to any other possible causes such as viral (Norovirus), bacterial (Campylobacter jejuni or shigella) or parasitic causes (Cyclosporidia) which are just a few of the other possible causes. Pediatricians are pretty savvy and will order stool cultures and/or testing of stool for ova and parasites, where indicated, to determine the cause of prolonged diarrheal epidsodes.

  97. #98 bad poet
    May 19, 2012

    @lilady, re #96

    I would never have associated C. diff. with autism spectrum disorder. I have seen various species of loons link “yeast” (not C. diff.) to various “maladies” here. Personally, I go get the appropriate antifungal product and use as directed. If I need yeast for baking, I recommend Red Star brand dry yeast.

    That brings me to the “gluten free/casein free” business. If someone’s been diagnosed by an appropriate medical specialist (not a naturopath , homeopath, chiropractor, vitamin/supplement store person, etc), then it’s great these products are more widely available. Otherwise, I’m completely unsure why that has anything to do with ASD

    I had all the tests needed to rule out C. diff. once. That was not fun at all. I really don’t understand why so many people call their doctors for some antibiotics when their noses start running a little, claiming they’ve got “sinus infections”. Maybe more of them ought to have to have C. diff. tests.

  98. #99 lilady
    May 19, 2012

    @ bad poet:

    See my post At # 25 above and the link to the interview that Alison provided to her father. At the end of that video is a short interview with her child’s pediatric gastroenterologist, Dr. Thomas Buie.

    Dr. Buie was one of the primary researcher of a study, that tried, unsuccessfully, to replicate Wakefield’s notorious…now retracted study…that *linked* autism with the MMR vaccine. The bowel specimens that he removed from the 12 children who participated in his study mysteriously *went missing*. They would have proven…or disproven…his theory of autistic enterocolitis associated with the triple antigen MMR vaccine.

    http://scienceblogs.com/insolence/2008/09/yet_another_really_bad_day_for_antivacci_1.php

    There may be a small subset of children/adults who on the “spectrum” who have bowel disorders…but bowel dysfunction is not caused by any vaccine, any series of vaccines, any preseratives or adjuvants in vaccines or the timing of vaccine administration.

    BTW, having Irritable Bowel Syndrome or Crohn’s disease diagnosed by a gastroenterologist, is not precluded in a patient who has been diagnosed with ASD…they are not mutually exclusive.

  99. #100 Autismum
    May 19, 2012

    #93, @Adelady
    “It occurred to me that some of these parents are into what I call “competitive parenting”
    That doesn’t stop when their child is diagnosed as autistic. These mothers are still competing:
    Whose child was the most perfect before autism struck?
    Whose child is the “most autistic”?
    Which mother has taken on the most health professionals (I could compete on that one, I bet)?
    Which mother has tried the most therapies?
    Worst, which mother has tried the most dangerous/invasive/newest therapy?
    They’re still competing just in different events, all egging each other on and all getting louder and more shrill.

  100. #101 Roger Kulp
    May 19, 2012

    lilady@97,and 99,bad poet@98

    I know a lot of people still dismiss it as woo,but there really is something to this GFCF diet stuff,especially in autism related to genetic causes.This is one area where CAM and mainstream science are coming together.I know it’s the case with autism,where there is autism caused by cerebral folate deficiency,like I have been found to have.This stuff may be fairly newly discovered,but I can tell you from experience it isn’t new.

    http://www.autismone.org/content/cerebral-folate-deficiency-autism-spectrum-disorders-richard-frye-md-phd-and-daniel-rossigno

    There is also the companion 2012 Nature article,but I don’t want to post too many links here.

    The gut-brain connection is very real.So is the comorbidity of celiac in autism.As Harvard’s Dr.Martha Herbert noted in her address here

    http://www.autism.com/index.php/video/view/the-autism-revolution/flv

    celiac is often found in autism of purely genetic causes,and once the diet is corrected the autism improves,even when conventional wisdom said it would not.

    I have had celiac my entire life.It,along with homocystinemia,caused me to have both pseudohypoganadism,lifelong muscle wasting,and for most of my life,rickets.I have never had a biopsy,but I have had lots of bloodwork,including being shown to have a uniquely pediatric celiac phenotype.I suspect such phenotypes are a lot more common in autism than you might think.

    I was diagnosed as

  101. #102 lilady
    May 19, 2012

    Right on, Autismum!

    There is no treatment that is too outrageous, too invasive, too *unscientific* for these parents to try.

    These are the same small segment of parents whose children hae been diagnosed with ASDs who *claim* their child was *perfect* or *extraordinarily gifted* and was *stolen* from them…following immunization/and/or immunizations.

    When was the last time any of these malcontents EVER lifted a finger to help another disabled child, whose parents are not in lock-step with their narrow-minded thinking?

    I’m beginning to think that many of these parents have some mental disorders that have been expressed, once their child(ren) have received a medical or educational diagnosis of ASDs.

    Shouldn’t we take a stand here and now, and call them out for their dreadful parenting skills, their self-centered ego-centric personality disorders and, their child abuse?

  102. #103 Science Mom
    May 19, 2012

    It was Clostridia that you had failed to diagnose.”

    Here is what caused her child to have “unformed bowel movements”

    @ lilady, yes C. difficile is treated with antibiotics and also faecal transplants in extreme cases (medically-supervised of course, not the DIY bucket and pastry bag that some curebies employ). That said, I can just about tell you what happened here. The child’s apparent recovery was simply due to a natural re-seeding of the gut and/or probiotics were given. Although these ego-driven parents will claim it is whatever intervention they administered.

  103. #104 lilady
    May 19, 2012

    @ Roger Kulp: I might be mistaken, but IIRC, the last time we debated Andrew Wakefield’s “study” you were defending his ordering of invasive, painful and medically-unwarranted colonoscopies of the 12 children diagnosed with autism.

    As I recall, you are a person who was diagnosed with ASD along with a gastrointestinal disorder. I believe I explained to you, at that time, that my son had frequent GI bleeds…associated with fevers that caused dehydration and destruction of his platelets, secondary to his pancytopenia.

    Because certain licensed physicians have associated gastrointestinal disorders with autism, is really no reason to assume that Wakefield’s study has validity.

    Why haven’t you had a biopsy Roger? It would be the confirmation of your “uniquely pediatric celiac phenotype.”?

    @ Science Mom: The AAP now has recommendations about treatment of ear effusions:

    http://www.health.harvard.edu/fhg/updates/update0804b.shtml

  104. #105 Thomas
    May 19, 2012

    “When was the last time any of these malcontents EVER lifted a finger to help another disabled child, whose parents are not in lock-step with their narrow-minded thinking?”

    JB Handley says that caring about other children is a sign that you’re not the parent of an autistic child. This was part of his ‘evidence’ that Sullivan couldn’t be the parent of an autistic child; Handley wrote: “‘What parent of an autistic child would write, “my main concern is to create a better world for all people, but especially for people with disabilities. Autism is a great challenge. People with autism deserve respect and support”? Give me a break!”

    I take Handley at his word – he can’t imagine any parent working towards a better world for autistic children – and that tells me all I really care to know about how he thinks.

  105. #106 Science Mom
    May 19, 2012

    @ Science Mom: The AAP now has recommendations about treatment of ear effusions:

    http://www.health.harvard.edu/fhg/updates/update0804b.shtml

    @ lilady, my paeds have been doing “watchful waiting” for years. Only a single round of abx along with probiotics for an ear infection that was clearly bacterial. Also, no abx without testing and no “fever hysteria” so I can count on one hand how many doses of Ibuprofen my children had. Ooops, I’m supposed to be a pharma whore along with all of those physicians; Lord Draconis will surely be displeased at this admission.

  106. #107 lilady
    May 19, 2012

    @ Thomas: How could I have forgotten J.B Handley’s quotation…when he blogged about Bonnie Offit…drawing the illogical conclusion that “Sullivan” at Left Brain/Right Brain was the ‘nym of Dr. Bonnie Offit.

    For any newbies, here is Orac’s hilarious take down of J.B.’s blog:

    http://scienceblogs.com/insolence/2010/11/i_am_bonnie_offit.php

    P.S. I am Bonnie Offit

  107. #108 Chris
    May 20, 2012

    Off-topic: toodles dear friends. As the ultimate pack master I must put all assorted sundries into the luggage for our trip. Hopefully a child’s old laptop will function for some interaction over the next week, but it will be brief.

  108. #109 lilady
    May 20, 2012

    @ Chris…I expect that you will be firing up the laptop…in my absence. I’ll be off to Rome next week, then on to Umbria and finally Germany. It has been a *bear* to coordinate meet-ups in Rome and then Umbria with three couples flying in, from three countries.

    Have a great fun-filled trip, my friend :-)

  109. #110 Roger Kulp
    May 20, 2012

    lilady,

    Yes,I do have an autism diagnosis,as well as a severe nonverbal learning disorder diagnosis,with all of the severe childhood developmental delays,motor,toileting,etc that would go with it.

    I guess you might say that,untreated,I am somewhere at the severe end of PDD-NOS,but not quite in the Autistic Disorder territory.My mother’s recent death,brought about the third time in my life I came very close to ending up in an institution,or group home.I learned I have a loving,supportive group of friends in my landlord’s family.They have an autistic son.They have done incredible things to help me in the last six weeks.

    I am not sure what you mean.I do think someone with an autism diagnosis,and a lot of unexplained medical issues should have as many tests as possible.By that I mean things like metabolic markers,genes,immune tests,what have you.Blood tests,lots and lots of blood tests.If you consider that invasive,what can I say?

    You are aware there are a lot of metabolic diseases,chromosomal deletions/duplications,what have you,that can cause both autism,and a whole host of medical issues.Many of these were not known to be associated with autism ten,fifteen years ago.22q deletion and methylmalonic acidemia cobalamin C,can sometimes look very similar in a clinical presentation.The difference is in testing for the genes and chromosomes.I know there can be false positives,false negatives,and just plain times when the results aren’t clear.This is when you need a good,supportive doctor,who knows their stuff.The only time a patient,or parent,should follow their gut,so to speak,is when you know you,or autistic child,has enough of a serious problem,that it has to be genetic.

    Research PubMed, Google SCHOLAR,and study every single genetic syndrome or disorder associated with autism,and you/you child’s particular set of problems.Make a list of genes,chromosomes,and markers to be tested for.Go down the list and get tested for them all.This may take a few years,multiple doctors,and multiple hospitals as it did with me.But the payoff is incredible,especially if you find the right metabolic cause and how to treat it.

    It was only about five months ago,that I learned CFD was the culprit,after six years of working 24/7 on trying to find the answer.

    You may have to have the blood sent to a hospital several states away,and pay for the testing out of pocket.Or,you might get lucky,like I did,and find a doctor who was both sympathetic,and interested,enough to do it just because they want to advance the science,and your case is interesting enough.It takes a good bit of research on your part to be able to convince a big time specialist that it is.Not everybody is up to it.

    I think this applies to anyone with an autism diagnosis,and lots of medical issues,adult or child.The fact that all the science has largely ignored adults is a great tragedy,not to mention shameful.Sick autistic adults are just as important as sick autistic kids.But the antivax crowd would never admit they are out there.In fact they deny we exist.It goes against their credo of “our kids are unique”.

    As Dr.Herbert says,this is a true revolution of healthcare.One that should include patients of all ages.

    I can’t find a link,but all I know is,a doctor told me the specific type of human leucocyte antigen phenotype I had was a very strong indicator of childhood onset celiac.I’m sorry,but I can’t find that particular lab page right now.I had already gotten diagnosed by blood test a few years earlier,and it was fairly clear that I had had it all my life.I had so many other tests done at the time I didn’t want to push it.

  110. #111 lilady
    May 20, 2012

    @ Roger Kulp…Regarding your newly-diagnosed CFD…do you mean Cerebral Folate Deficiency?

    Have you checked out the NIH-Rare Diseases Division?

    http://rarediseases.info.nih.gov/GARD/FindAnExpert.aspx#Specialty_treatment_center

    Here is an interesting “case” of adult-onset CFD that was treated successfully with folinic acid supplementation:

    http://www.ncbi.nlm.nih.gov/pubmed/22371854

    About your celiac disease Roger…why didn’t you ever have a biopsy of your small intestine? It is the definitive diagnostic test.

  111. #112 darwy
    May 20, 2012

    @Lilady

    If you’re ever up north near Copenhagen, let me know and I’ll buy you lunch!

  112. #113 lilady
    May 20, 2012

    @ darwy…how sweet! Not this trip however. I’ll be in Bad Godesberg, near Bonn. We may travel eastward…depending on the plans made for us by our German friends.

    @ Roger Kulp, again I feel sorry for you, but the inflammatory condition that you may have in your small intestine, is not the colon inflammation claimed by Wakefield and the parents of the 12 children in his *study*. Don’t forget that he falsified the medical records of these children, so that parents could sue the vaccine manufacturer of the MMR triple jab and he put the study subjects through medically unwarranted ileo-colonoscopies as well as lumbar punctures, for financial gain.

  113. #114 Matt f
    May 20, 2012

    @rodger
    “I think this applies to anyone with an autism diagnosis,and lots of medical issues,adult or child.”
    While many children or adults have problems, it’s really bad form to lump that big of a group of people together without backing it up.Take me for example, high functioning autism. I for one, am pretty healthy and have been. The only problem is occasional migraines but I am pretty sure that is genetic as every generation has at least one person with them. I also know a few pther people with it and they are fine. While this is anecdotal, I don’t like the statement at the beginning of that paragraph. I sorry for your condition. I would listen to lilady she knows what she is talking about.

  114. #115 Denice Walter
    May 20, 2012

    @ Roger Kulp:

    I would take what Dr Herbert says- despite her credentials- with a grain of salt, actually, with a quarter of a teaspoon of salt; she has recently appeared on AutismOne Radio, will give several talks at their upcoming conference and has appeared at PRN’s noontime festival of woo ( you may see this if you find AutismOne’s speakers list/ google her name + Progressive Radio Network for archived records of her appearances).

    She speaks of bio-medical interventions, *inflammation* and dietary solutions. Whenever someone gains easy acceptance by various woo-prone advocates I become suspicious.

  115. #116 Roger Kulp
    May 20, 2012

    @ Denice Walker

    So does my friend Stephen Kahler,and his colleagues Jill James,and Richard Frye.So does Marvin Natowicz at Cleveland Clinic,and too many others to name.Dr.Kahler,and Dr.Frye talk about an entirely new emerging specialty called neurometabolic disease.Something a lot of doctors who are used to traditional IEMs have a hard time understanding,as I have found out.

    I never said I had the same thing Wakefield described.Even if I believed that crap,I’m much too old for that in the first place.I only say this to put this in some kind of context.The type of diseases parents at places like Age of Autism write about are not new.These are genetic syndromes that have always been with us.In the past children who had these syndromes,likely died of infection we can now prevent with vaccines,and antibiotics.Which is why I am very pro vaccine.

    I think the only reason you have not heard about people like me in the past,is because they were locked away in institutions,or group homes.Pretty much the same thing.

    I do have a history of my own “yard sale of medical problems”.This often often happens with metabolic disease.I was one of those children who was always sick,with many prolonged infections,this lasted well into my thirties.I had a severe chronic lung infection for ten years.I have had multiple regressions,triggered by acute infection,some as an adult.I have a type of juvenile arthritis,that only responded to the high dose leucovorin.I had episodes of eloping that were accompanied by dementia like symptoms,that were triggered by seizures.I also have severe,but treatable,pernicious,or megaloblastic anemia.

    All of this went away with the high dose leucovorin,except the anemia,and I am on B12 shots.I had lived with all of these since I was a child.I was also born blind in my left eye.

    I hate to say it,but it is the antivax/biomed people who have made the public aware that autism can occur as the most obvious,and outward feature of an underlying multisystemic (genetic) syndrome.It’s very difficult for anybody to understand this,unless they have had to live with it.Especially if all they can see is the DSM description of autism.There is a lot more than that to autism than that.

    True it may only represent a small per cent of those with autism,but we are out here.

    Aside from the obvious problems with the garbage about mercury,metals,chelation,and toxins,none of which I buy into,another problem with the whole biomed thing,is too many practitioners just threw any old treatment at the child,usually with an everything but the kitchen sink approach,without doing any testing.A good example is B12 shots for a child who is not anemic,and after too many practitioners did this,and it didn’t work on a lot of children,the skeptics said “See it doesn’t work for ANYBODY with autism.”

  116. #117 bad poet
    May 20, 2012

    Autism One holds its meetings of nutra shills and legal whores near where I live and work, I’m sorry to say. As I’ve read here in the past, anti-anti-vaccinationists are as welcome there as White Sox fans are in Wrigley Field. The Cubs are as likely to win a World Series as anyone at Autism One is to “cure autism” or “fix their broken children”.

    @lilady, enjoy your trip. Lord Draconis, please continue to allow your humble minions to keep the monkeys jumping. Some of us down here clearly need “mother’s little helpers” more than others, others enjoy helping, and the rest of us really like to watch.

  117. #118 lilady
    May 20, 2012

    “I hate to say it,but it is the antivax/biomed people who have made the public aware that autism can occur as the most obvious,and outward feature of an underlying multisystemic (genetic) syndrome.It’s very difficult for anybody to understand this,unless they have had to live with it.Especially if all they can see is the DSM description of autism.There is a lot more than that to autism than that.”

    Biomed people, Roger? Hardly so. Here’s Dr. Herbert “hawking” her book at “Fox TV Insider” news:

    http://foxnewsinsider.com/2012/04/02/can-autism-be-reversed/

    Notice how she *elaborates* on the gut-brain autism connection and *environmental* issues such as vaccines, ear aches, antibiotics and electric/magnetic fields, which *disturb/excite* a child’s developing brain.

    I’ve already stated in many posts that digestive problems/syndromes can co-exist with any developmental disorder…but they are NOT the cause of ASDs.

    My son, in addition to his many *odd* facial features (his medical records from the NICU note *FLK*-funny looking kid), had other birth defects as well…that were noted in the delivery room, and soon were noted in the NICU. He was profoundly mentally retarded and along with his intellectual impairment manifested pronounced autistic-like behaviors (self-stimming and self-injurious behaviors). Long before diagnostic-substitution included any child with autistic-like behaviors, he was “appropriately diagnosed” as being profoundly mentally retarded, spastic quadriplegic with a grand mal and psychomotor seizure and disorder.

    He also had pancytopenia…which was not part of his rare genetic syndrome. He had macrocytic megaloblastic anemia, severe leukocytosis and ITP complicated by a platelet aggregation and adhesion disorder.

    Roger, I have been involved in advocacy on behalf of the developmentally disabled for ~ 35 years. I know hundreds of kids who were diagnosed with classic autism, who are now in their 30s, 40s and 50s and none of them had serious medical conditions. Other kids, now grown up, were diagnosed with ADHD and Learning Disabled (many of them had mild intellectual impairments). They were placed in group homes…but they didn’t “end up” there. They are all in “supportive living” situations, sharing an apartment in a complex near to where they grew up. A few of these young adults are now totally out of *the system*. They are commuting on public transportation…some are licensed drivers with their own cars, competitively employed, living on their own in an apartment of their choice.

    I don’t know how physically or medically impaired you are. I do know that you are an intelligent person who could be competitively employed. I urge you Roger, to be your own advocate, to get involved with other self-advocates to press your local politicians for alternative housing and to try to get employment that is commensurate with your intellect and which will accommodate all of your physical or medical limitations.

  118. #119 DLC
    May 20, 2012

    Hm. . . why did we broaden the classification of “Autism” from the original “Kanner Syndrome” to “Autism Spectrum Disorder” to begin with ? I fear that the answer is largely financial. Government health care assistance and education assistance dollars go to categories, not individuals. If you have a non-specific developmental disorder, you get nothing, but if you have Autism, you get into the programs. This is something we need to address. This sort of pigeon-holing, isn’t good. We create these broad categories and then shove entirely too many children into them. Furthermore, let’s talk about the money wasted annually in these quack “biomedical intervention” scams. How much do these parents spend out of pocket on these scams? that poster from AoA claimed 30k a year. for how many thousands of children ? it’s a colossal sum. Blown out the waste-gate. Flushed down the toilet where these rats can get at it.

  119. #120 Ian Kemmish
    May 21, 2012

    “… the pediatrician could spend hours with no one but this mother and it is highly unlikely that he would convince her of the errors in her understanding of vaccines and infectious disease.”

    The irony of this one sentence is golden. Think of how many times you’ve typed in more or less the same article as this one. Estimate the time you’ve devoted to that. Calculate the cost of opportunity of that time. Now try to guess how many people’s minds have been changed by it….

  120. #121 Calli Arcale
    May 21, 2012

    Regarding celiac disease and autism….

    Autism and ADHD clearly run in my family. Apparently, so does celiac sprue (it’s a purely genetic disease, but a recessive trait so both parents must possess and pass it on; far more people are passive carriers than have celiac disease). The first in my family to develop celiac sprue that we know of is my cousin. Interestingly, she is one of the few who does *not* have any type of learning disorder. Also, her case is severe; she demonstrated it at six months, with her first exposure to wheat cereal, which resulted in an ileus.

    Now, I realize this is purely an anecdote. But it might help some understand why I am skeptical of the claim that autism and celiac disease are linked. I think many people with autism have celiac disease — but only a minority of them. Some others will have IBS or Crohn’s. This is not surprising, since these conditions occur in the general population as well. Since autism is associated with sensory processing difficulties, it stands to reason that treating bowel diseases and food intolerances will help them more than they would help average folks, as they are generally less able to cope with discomfort.

    It is not surprising that bowel disorders occur in the autistic. They are probably more readily diagnosed in the autistic as well, because their parents are more likely to bring them in for evaluations that might lead to appropriate diagnosis. The important question to evaluate whether there is a connection between the two things is whether bowel diseases occur more often in the autistic population than in the general population, after controlling for peculiarities such as abnormal eating habits.

  121. #122 bad poet
    May 21, 2012

    @Calli Arcale, re #121

    Funny you should mention that. The only person I know who has actually been diagnosed with celiac sprue (a friend, not me, nor a family member for the record) also does not have autism spectrum disorder.

    Anecdotes are not data, but I would prefer my friend not become ill. I bring a mixed fruit salad when I visit her for a meal, she makes excellent beans and rice, we both have a wonderful time.

  122. #123 herr doktor bimler
    May 21, 2012

    It is not surprising that bowel disorders occur in the autistic.
    The occasional insistence on a rigid diet probably doesn’t help… especially things like lettuce and yoghurt for every meal.

  123. #124 Denice Walter
    May 22, 2012

    And back to business!

    Today @ TMR:
    Mama Bear informs us that dealing with autism has enabled her to “see more” than others do- she has a veritable sixth sense about autism,: ” I feel like I was given x-ray glasses that look into the souls of those who suffer from it”.
    She would like to share her vision to “those who are blind to this epidemic”.
    I guess that’s us.

    Yesterday’s post was about art. Don’t ask.

  124. #125 Orac
    May 22, 2012

    BTW, I’m trying to get the comments back. Contrary to the promises of the developers, I’ve lost about a month’s worth of comments as far as I can tell.

  125. #126 Politicalguineapig
    May 22, 2012

    Does anyone else notice a resemblance to Munchhasen by Proxy in some of the descriptions of the treatments the mothers follow? I read a book about it, and some of these mothers resemble the mother in the book so much that it’s scary.

  126. #127 Denice Walter
    May 23, 2012

    @ Poiticalguineapig:

    I’ve been meaning to answer you- you bring up a few inter-related themes:
    sounds like MBP partially, because the vaccine damage’ / GI-ASD link parts ARE fictitious and the spurious tests and woo treatments are initiated by the mis-guided parents- also it expresses the parent/s’ pathology *but* these kids have DO a real condition (ASD) as well.
    .
    MBP as a fictional disease with unnecessary tests resultant in getting attention sounds like AJW, doesn’t it ?
    -btw- the fraudster himself has a new book out on MBP and the Arizona 5 (advertised @AoA)…what the rational call MBP is REALLY “recovered ASD” or suchlike- or so he tellls us.

    Unfortunately, labelling kids as damaged goods might eventually be picked up by the children themselves- in today’s post @ TMR, Ms Cupcake** reports that her son who has ASD says that he is “broken” and “can’t be fixed”- it’s truly heart-rending to hear that a child has such a self-image (wonder where he learned that?); several others talk about how hard it is to get supplements down their children’s throat. Right.

    ** I’m not sure whether those ‘nyms invoke more pathos or nausea….

  127. #128 Politicalguineapig
    May 23, 2012

    Denice Walter: Yes, exactly. Although I was thinking more of the dechelenation treatments and all the homeopathic treatments/special diets those kids go through. Not to mention how the mommas go doctorshopping whenever they hear an answer that doesn’t support their view of the world.
    As for the post-ugh. I know a couple of people on the spectrum, so I tend to take stuff like this personally. (I might even *be* on the spectrum.) I find it disgusting that parents are so willing to write their kids off, and of course, the kids pick up the message that they aren’t worth anything until they’re “fixed.” That’s the last thing any kid needs to think about themselves, especially the kids who need their parent’s protection and help the most.
    Kind of begs the question of what would happen if one of these parents had a child who lost hearing or eyesight to those diseases they’re so eager to bring back. I swear, there’s nothing worse than a type-A parent who didn’t get perfection.

  128. #129 Kelly M Bray
    May 23, 2012

    I understand how these parents feel. When I realized my son Tim had autism I was devastated. I wanted to do anything and everything to help him. I quit my job at a large company and started a handyman business. I jumped into early interventions, learned Floortime, ABA, and anything else that seemed like it would help. I volunteered in his school, went on field trips. Got fooled by Wakefield for a few months. But unlike the TMR mom’s I listened and learned. I truly think they have lost their way.

    I wrote this story a while back when I was trying to explain my journey with my amazing son Tim to a friend. I posted it here a while back but I think it is fitting to this conversation.

    “My 14 year old son has autism. He is geeky, gawky, dorky, sometimes skips when he walks, and runs funny. He is also intelligent, funny, tells horrible jokes, is kind, thoughtful, compassionate, and loves animals. He is a great joy in my life.

    But there was a time a time when I was not so sure about what I felt. He was five years old and struggling at times. I wasn’t sure how he was going to do in life, how he was going to make it. I was in a great deal of emotional pain. I was talking to my mentor in a program, and felt like I was being torn apart. My younger brother was severely mentally and physically disabled. It tore my parents lives apart, and all I saw was life going down that exact path. I cried out “Why in hell did God damage my son’s brain, why him???” My friend looked at me with great compassion and said “ I don’t know”. He then asked me “Do you love Tim?” I told him “With all my heart”. He then said “ If I was able to give you the power of God right now…what would you do, what would you change?”. My mind whirled, but I was suddenly stumped. What could I change about him that would not change the parts of him that were unique and beautiful?

    The little boy who would run down the daycare hall screaming “daddy” and jump into my arms.
    The little boy who put his arms around me and tell me he loved me as “big as the sky”.
    The little boy who would crawl into bed with me ask me to read a story with him and then curl up next me asleep.

    I realized I loved him exactly the way he was, exactly who he was, perfect, and I would not change a thing.

    That does not mean I won’t help him be the best person he can be. But it means I am not going to go around thinking he is broken and cursing the world for creating him. I truly pity the parents who are so busy being angry and resentful that they cannot appreciate the beauty of the child they have. I can and I am forever blessed by it.”

  129. #130 Patrick H
    May 28, 2012

    I find it incredible that these “thinking moms” really believe that they are more versed in topics like vaccination than those who have their MD. These women seem to think that everything they read from a Google search must be true, and that their physicians must be mistaken. While the internet is a great resource (when used properly), the surge of anti-vaccine campaigns just goes to show how it can often blur the truth and construe it in many different ways.

  130. #131 Chemmomo
    Comment Limbo
    June 3, 2012

    Why do the comments revert to May 28 if you access this post via the Archives?

  131. #132 Chemmomo
    Comment Limbo
    June 3, 2012

    Where did they go? What happened to everything in between? I had access yesterday via Insolence Returned, but then what happened?

  132. #133 Chris
    Covered in flour after making a few pizzas...
    June 3, 2012

    Are you sure you are in the right place? Perhaps you need to be in this earlier thread:
    http://scienceblogs.com/insolence/2012/05/07/the-not-so-thinking-moms-un-revolutions/

  133. #134 Chemmomo
    On the wrong post!
    June 3, 2012

    Or it could be because I’m looking in all the wrong places. D’oh!

  134. #135 Narad
    June 4, 2012

    Contrary to the promises of the developers

    Please. I wouldn’t call a PHP jockey a “developer” in the first place, and these guys don’t even seem to have a grip on that. I’ve seen software deployments lovingly screwed up by people who don’t have to actually try to use the mess before, but this is amazing.

  135. #136 Wendy Frye
    www.jugglingtheastronaut.wordpress.com
    June 5, 2012

    Well,
    One thing is certian – this issue is not going away any time soon. Even in the ho-dink newpaper where I live there is some kind of article written about vaccines……why is there so much attention, both “pro” and “no”?

  136. #137 Liz Ditz
    Slumming
    June 8, 2012

    Here’s a comment from one of the “Thinking” Moms, at Facebook, which serves as a model of their thinking

    One downside to being a Thinking Mom: every tiny health problem sets off alarms for huge health issues in our heads. Catch your kid giggling=OMG YEAST!!! Kid pitches a fit from nowhere=clostridia or strep?! Somebody gets tired faster than you think they should=could it be MITO!? one dot on the back=chickenpox/shingles/eczema/or food allergy??? ARRGG!!! Can’t a spot just be a spot? An illness an illness? I’m tired. =Blaze

    I would like a definitive post on the yeast / “systemic Candida” myth.

  137. #138 Denice Walter
    June 8, 2012

    @ Liz:

    Candidiasis was the be-all,end-all woo of the 1990s: if you google ‘candidiasis’ @ Quackwatch, you’ll get 60 articles- see especially : Dubious Yeast Allergies ; Be Wary of Fad Diagnoses- amongst the first few hits.

    Obviously, systemic candidiasis ( GI) fits in with the entire frothy, hot mess of AJW’s GI/ ASD connection ( imagined).
    Her comment also alludes to the bacteria-driven model: she must have heard Prof Montagnier speak.

    Seriously, I am repeatedly amazed by the quality of thinking exhibited by the thinking moms.