Respectful Insolence

Praying for an anti-vaccine “advantage”?

A couple of months ago, right before TAM 9, I took note of a rather disturbing post by one of the regular bloggers on the anti-vaccine crank blog Age of Autism. Basically, the post was worrisome because in it Kent Heckenlively portrayed those who oppose anti-vaccine pseudoscience as “wicked,” even quoting Psalm 94, which is a psalm that calls upon the Lord to bring his vengeance upon the wicked and destroy them. He also invoked Stephen King’s novel The Stand. Normally, this wouldn’t be such a big deal, except for its timing. Most skeptics will know that The Amazing Meeting is a yearly meeting of skeptics that takes place in Las Vegas every year. In The Stand, the climactic battle between good and evil takes place in Las Vegas and ends in a nuclear conflagration that destroys the city. The timing of Kent’s post, although probably coincidental, was nonethless rather disturbing, particularly given the emphasis on countering anti-vaccine lunacy.

Fortunately, nothing happened, and a good time was had by one and all at TAM. In the wake of his post, Kent Heckenlively backed off from his frankly apocalyptic language and imagery; that is, he backed off until now. For, what to my wondering eyes should appear yesterday on Age of Autism but a post by Kent entitled Faith. It would appear that Mr. Heckenlively is returning to that same sort of language. In a way, though, his post is instructive in that it makes explicit the link between religion and anti-vaccine beliefs. Kent begins with an anecdote:

My wife often says I’m “the believer” among the two of us. In her mind faith comes easily to me, but when she sees the inequities of the world, the difficulties so many deal with on a daily basis, it’s difficult for her to summon much belief in a divine entity.


He then goes on to explain how hard it is to maintain a faith in God in the face of the difficulties of raising his daughter with autism. This is the same daughter, I feel obligated to note, whom he has subjected to quackery such as that provided by a Costa Rican stem cell quack clinic, as well as whose story he has defined as a constant search for means to cure her that has led him to subject her to a seemingly never-ending string of dubious medical tests and treatments. His observation of how difficult his life is because of the strains of raising a daughter with multiple severe disabilities leads him to ask:

Why would God let a child be born if they were going to come down with autism? My daughter with autism/seizures is thirteen years old. My son who is neuro-typical is eleven. My daughter’s condition is so severe that the four of us have never gone out to a restaurant. We have never been on a family vacation. When I walk in the door after work I know my daughter will probably have been tantrumming for at least a half hour, a condition which is only remedied by putting her in my car, and taking her for a long drive. My wife would ask, where is God in that domestic scene?

I realize that anti-vaccine activists won’t believe me, but I sympathize. Really, I do. I can only imagine how difficult it must be to raise a daughter with severe autism plus various other chronic medical problems. I’ve said it before, and I’ll say it again. I don’t know if I could meet such a challenge if it were presented to me, which is why those who do earn a measure of respect from me. Yes, even anti-vaxers. Even so, that measure of respect does not mean I’ll lay off when such parents promote anti-vaccine pseudoscience, and Kent has done that in spades time and time again. Also, regardless of how much I might feel for Kent’s travails trying to care for his daughter, he views me and people like me as “wicked” because we oppose anti-vaccine pseudoscience. That, I cannot ignore.

Kent’s view of skeptics who support vaccine science aside, Kent does have a solution to let him continue to believe in God without blaming him for the plight of his child. Not surprisingly, he invokes the common excuse that “we can’t see all of God’s plan,” but more oddly, he appeals to free will:

Lately I’ve come to a new approach, one that satisfies my need to believe in a higher power, but also acknowledges the wickedness I often see in the world. For I can call it nothing less than wickedness when the medical community refuses to perform a study of the neurological health of vaccinated and unvaccinated children. It is nothing less than wickedness when those who suffer from chronic fatigue syndrome/ME are told they are not physically ill, but suffer only from a mental illness.

My new approach is simply “free will.” God gave us all free will. It has consequences. People can choose to do bad things through the exercise of their free will, and others will suffer as a result. It’s true that God made the world, but we’re the ones who live in it. This world and what we do in it is the responsibility of the human race.

Note that this is nothing more than a toned down version of his previous post, in which he views those who oppose him not as being just wrong, but “wicked” or evil. The only part he’s left out is that in this post he isn’t quoting Psalms appealing to God to destroy the wicked. And there’s the difference between Kent and me. I don’t view Kent as evil or wicked, even though what he advocates regarding vaccines can potentially have dire real world consequences for public health, up to and including the deaths of children from vaccine-preventable diseases. I don’t even view him as evil or wicked for what he does as he searches for “cures” for his daughter. I view him as wrong. I view him as well-meaning, kindly even, but exceedingly misguided. In contrast, Kent has stated on more than one occasion, most recently in his current post, that he views those who disagree with him as “wicked” for not wanting to do a “vaxed versus unvaxed” study. He says this even though our reasons are that (1) the gold standard study of that type, a randomized, double-blind, placebo-controlled study, would be profoundly unethical; (2) a population-based retrospective study would be exceedingly difficult, expensive, and impractical; and (3) there is no compelling preclinical or epidemiological evidence suggesting that such a study would be fruitful. For adhering to science and ethics, apparently we’re “wicked.” We’re “evil.” At least, we are in Kent Heckenlively’s eyes.

So what’s his solution to the problem? Unfortunately, it’s the most ineffective solution you can imagine:

But as much as this is a world of free will, God still watches over us, and I believe He responds to prayer. Prayer is also an act of free will. And so on this Sunday I encourage you to pray for good things in the weeks ahead. I ask you to pray that those who are trying to help us will gain an advantage over those who would leave us in darkness.

Yeah, that’ll work. On the other hand, it might make Kent feel better and, of course, all righteous, which is the main purpose of prayer in this sort of a situation anyway. If he’s going to pray for something, he should choose to pray that scientific enlightenment will find its way into his mind and those of his fellow bloggers at AoA. The likelihood of that prayer being answered is about the same as the likelihood that “righteous” antivax “investigators” will gain an advantage over science. Certainly, they won’t gain it based on science, anyway. But at least if a prayer that Kent and his AoA cobloggers achieve scientific enlightenment were seemingly answered, it would be a very good thing indeed.

Comments

  1. #1 Denice Walter
    September 19, 2011

    While I really don’t have the time right now to go into detail, an interesting thing happens when you start viewing those who disagree with you as “wicked”, “evil”, or not being amongst the Chosen Ones who are held approvingly in God’s own Hand. I’m sure you can guess rather accurately what follows.

    Talk like this adds fuel to the anti-vax fire: already they are isolating themselves from media and governmental sources and eschewing standard explanatory systems. They paint themselves into a corner surrounded by only those who are in agreement. Welcome to the Realm of Un-Reason!

  2. #2 Liz Ditz
    September 19, 2011

    So I had to go over and read Heckenlively’s whole post.

    One of the things that bothers me the most about his approach is I’ve never read him write one appreciative or compassionate word about his daughter. It’s all doom and gloom and how hard her condition and her behaviors make life for himself and the rest of the family.

    Yes, parenting a child with autism, even intense autism, can be hard. But many parents of autistic children don’t catastrophize and have learned to take pride and joy in their children Shannon Rosa writes about how she learned to change her own attitudes for the better.

  3. #3 MikeMa
    September 19, 2011

    Kent hates his life. His daughter is a core reason for his life’s miseries. The blame he assigns to vaccines, big pharma, the government and science act as a focus for his retribution. He could have taken it out on the daughter and abused her (worse than the quackery I mean) or institutionalized her. He has instead looked to blame an external force without proof, even against proof.

    If Kent could just push through and accept his situation and look for even the smallest positives to accept and cherish, he might not be as mean, bitter and deluded as he is.

    I do appreciate that my kids have just the usual maturity issues like speeding tickets and extended senior years to graduate college. Minor blips compared to severe autism. I do not have an autistic child to care for so I cannot imagine how far my strength would carry me but I cannot imagine anything that would overturn my intellect and reason as Kent has allowed to happen.

  4. #4 Landru
    September 19, 2011

    My stepson–who is nonverbal, labelled as high-function, diagnosed with PDD/NOS, and who, to protect the innocent, I shall call Bam-Bam–is one of the lights of my life. When I think about my fears and misgivings about marrying Bam-Bam’s mother because of his diagnosis and behavior (as a 4-year-old–he’s now 11), I blanch with shame.

    While it’s hard to be away from my wife and my more-or-less neurotypical stepson (and seriously, who among us is “neurotypical”?) on business travel, the most soul-crushing bit of it is that my all-too-frequent absences too often keep me from filling my place in Bam-Bam’s routine. And he’s not keen on it, either, though he’s mostly a damn good sport when I’m not the one who tucks him in (as, in his view, is meet and right–Mommy tucking me in? Screw THAT!).

    I say this only of what Liz says here. It wrecks me to see any parents of ASD children acting as if their children are something to be ashamed of, something to be affirmatively and dramatically normalized. Of course it’s our duty to help our children accommodate a world not eager to accommodate them. And I’m lucky that my child is not more severely affected in terms of behavior or capacity or affect. In fact, I’m lucky that he’s a remarkably sweet and happy child. But holy crap, I cannot imagine feeling so alienated by my child–even one not born of me–that I’d treat him like that.

    Thanks to Liz for the food for additional thought.

  5. #5 anarchic teapot
    September 19, 2011

    I ask you to pray that those who are trying to help us will gain an advantage over those who would leave us in darkness.

    Of course, that could be read ironically as a plea for SBM to prevail over antivax nuttery.

    Someone also needs to explain to him that mental illness and the word “only” do not go together. It sounds like he’s another of those people who think that if you can’t see any physical symptoms, then’s you’re not ill.

    That makes me very angry.

  6. #6 Calli Arcale
    September 19, 2011

    Ah yes — the “how can there be God if there is misery in the world?” question. Heckenlively hits on one of the ancient favorites: misery is the result of people deciding to do bad things, because God would never decide to do bad things. This works with his idea that his daughter’s condition is the result of medical malfeasance — someone screwed up, so his daughter has autism.

    This is very popular, because on the face of it, it does seem to fit the circumstances as well as the claim that God is love. But on further examination, one finds problems. Firstly, why must *she* suffer because *someone else* screwed up? And what about natural disasters? Well, most people who think this way tend to extend it to divine retribution — earthquakes happen because someone has been evil and needs punishment. Heckenlively doesn’t seem to have gone that far yet, and perhaps it is because of that possibility that he resists the evidence that autism is inborn — if autism is inborn, then to maintain his philsophy that evil is the result of human error, he would have to conclude that her condition is *retribution*. And then things get much darker.

    (Note, however, that the Hebrews at the time the New Testament was written did widely believe this, and consequently the Bible as we modern Christians understand it is permeated with the idea of misfortune being either a penalty or some kind of test — IOW, that God *does* cause evil, but for explicit purposes which would make the world better. In my reading of it, Jesus was arguing against that mindset, hence his work with lepers and bleeding women and tax collectors and such, but I know not all Christians will agree with that….)

    Why do bad things happen to good people? I know a very good man who has a very strong faith in God who had a truly horrible thing happen to his family. No one could be blamed; it was weather-related. His son was killed, and his daughter was left severely disabled. He went through angry moments, of course; grief is normal. But he still believes passionately in a God of love. And, most importantly, he believes in his daughter. He loves her deeply, and would do anything to help her speak and walk again. And maybe one day she will; there have been slow positive developments, and the most reassuring part is that she’s definitely still “there”. She just can’t talk much yet. But when he talks about her, he rarely talks about her impairments, or the inconvenience she causes him. Instead, he raves about the beautiful smiles she gives when he plays the guitar for her, or the way she glows when her new baby brother is put in her lap. Recently, she even said her own name for the first time in years! Perhaps the difference is that with what happened to this girl was so clearly a random thing. Weather does what it does; “it rains on the just and the unjust alike”. Heckenlively, however, has been able to latch on to a possible meaning for the profound thing which has happened in her life. Something that makes it not random, and therefore somehow explicable.

    Heckenlively may simply be exhausted, and is not thinking very clearly. He says he has not been to a restaurant or been on a vacation; well, it doesn’t have to be that way. He seriously needs to look into respite care so he and his wife can go out, get a mental break, and have some grown-up conversation for a while. And he should consider getting a relative to watch the kids for a while so he and his wife can go on a short vacation. It’s not bad to do that; even many parents of normal kids do that. It’s important to go look at some different stuff every now and again. Even if you just go to a hotel in town, you’re looking at different walls, and somebody else is doing the laundry and the vacuuming and the cooking and you can *relax* for a little while. He really should try it.

  7. #7 Phoenix Woman
    September 19, 2011

    Teapot, et al:

    I think that part of the problem is that most of the time, autism waits until toddlerhood to manifest itself. Parents that had thought they’d steered clear of the various genetic Scyllas and Charbydises (Down’s syndrome, etc.) suddenly find their normal-looking child acting abnormally.

    Instead of panicking and assuming they’re doomed (or that they’ll never have social lives again, oh woe), they need to know that even the most seemingly unreachable autistic kids can be taught to live full, happy lives. Dr. Temple Grandin may well be the most famous example — she spent much of her early childhood literally flinging about her own excrement, ape-style, and with love and care grew up to put her childhood experiences to work for her as the world’s greatest expert on humane treatment of livestock — but she is by no means the only one. (Grandin’s story, and that of several other non-neurotypical persons, is told in An Anthropologist on Mars, to which she gave the title.)

    The irony here is that so many of the people spending their energies either praying or trying to get scientists fired or killed or simply trying to do what they think of as work towards an impossible cure, would so be much better off using that time and energy learning how to manage their childrens’ conditions instead of looking for the one miracle drug or therapy they hope will give their kids neurotypicality. If you have the energy to stalk scientists online because they ticked you off, you have the energy to work on therapies with your child so they might eventually be better able to cope with the world.

  8. #8 Ruth
    September 19, 2011

    Calli-I hope others have better luck with getting family to help out with respite care. Mine never would watch my daughter because they really didn’t know how to deal with the meltdowns. It was especially bad that they would take the other children. She is autistic, not stupid and wondered when her turn to visit her aunt would come. Now I just don’t have much to do with family.

    Even when my daughter’s behavior was most difficult, I could see the wonderful person she is. The laughter of a child is the sweetest sound I know.

  9. #9 turkseks
    September 19, 2011

    good blog anti vaccine post…His daughter is a core reason for his life’s miseries. The blame he assigns to vaccines, big pharma, the government and science act as a focus for his retribution. He could have taken it out on the daughter and abused her (worse than the quackery I mean) or institutionalized her. He has instead looked to blame an external force without proof, even against proof. turkseks yeşilçam istanbul…

  10. #10 Robert M
    September 19, 2011

    I was under the impression Heckenlively already found his theological answer to the problem of evil, and its the vaccines. Oh, and doctors who won’t preform unproven, unsafe, and expensive procedures on children.

  11. #11 Anton P. Nym
    September 19, 2011

    (Tangential to comment thread, but comment #8 as of this posting appears to be “copied comment” spam linking to a turkish web site.)

    I have great empathy for the Heckenlively overall, but alas I’m not saint enough to extend that to Ken himself given his commentary and actions. I wish I was… and I can certainly understand that caring for a multiple special-needs kid can be wearying.

    — Steve

  12. #12 JR
    September 19, 2011

    As an autistic parent of an autistic child, I am becoming increasing bewildered and angered by the rhetoric of anti-vaxxers, and the frankly histrionic, fear-mongering, pity-inducing language used to describe their children, and by extension, my family, as a plank in the platform to promote their unscientific views. Me and my son are nothing but fuel for their fire, and their bigotry toward us and misrepresentation of our condition has begun to steadily infuriate me more and more the more I read their little diatribes. My life is really not all that bad – we are different and have our issues but they talk as though we would be better off dead, and act on this by putting their own children at risk of deadly diseases in the false belief that it will keep them from turning into a monster like… me. I couldn’t possibly have less sympathy for them.

  13. #13 James Sweet
    September 19, 2011

    The Tohoku tsunami — also caused by free will?

  14. #14 D. Chapman, MD
    September 19, 2011

    As a physicain, while I am apalled at the results of the actions of Mr. Heckinlively and others at Age of Autism (decreased rates of vaccination and re-emergence of deadly vaccine preventable diseases), I think it is important to see an occasional post like this to remind us of the difficulties these families go through. Again, not to excuse Mr. Heckenlively’s choices, but not everyone is able to overcome the fight between their instinctive brain and thier logical brain to see through the fallacies we are all prone to fall for. Not everyone has the same capacity to deal with the day to day weight of caring for a severely autistic child.

    Several times a month I have the opportunity to evaluate and treat severely autistic children for acute illnesses in my practice. I was amazed at the patience of the father who brought his child in recently for a possible ear infection and told me he knew the child was ill because he was biting him more and hitting harder than usual – which the child did repeatedly during the visit.

    I thought to myself after the visit that I was not sure I would be up to that challenge. The investment of time and energy. I thought about my own two year old and how no matter how difficult the day I have in dealing with her typical two year old issues, it is rewarded with an “I love you” or “I want to snuggle” and what would it be like if I not only never get to hear that, but what if (in the most severe case) it could never be expressed to me in any way. And what if my daughter’s worst periods of behavior, the exceptions to the rule, were actually her at her best. I would like to think I would have the capacity to deal with it, to see the light through the darkness, but I don’t know … My admiration for the parents of autistic children, of all medically complex children has grown exponentially since I have become a parent.

  15. #15 Todd W.
    September 19, 2011

    Wait, wasn’t there already a study looking at neurological outcomes and vaccine exposure? IIRC, it was in California, and I think Orac even blogged about it.

  16. #16 Prometheus
    September 19, 2011

    “I ask you to pray that those who are trying to help us will gain an advantage over those who would leave us in darkness.”

    I think that Mr. Heckenlively would be surprised how that prayer is answered.

    In fact, I think it has already been answered: the people “who are trying to help us” (i.e. science-based medicine) are already gaining an advantage over “those who would leave us in darkness” (e.g. Generation Rescue, Autism Speaks, etc.).

    A long time ago, someone warned me to be careful what I asked for…

    Prometheus

  17. #17 Heliantus
    September 19, 2011

    It is nothing less than wickedness when those who suffer from chronic fatigue syndrome/ME are told they are not physically ill, but suffer only from a mental illness.

    I think this shows the core of Heckenlively’s issues with autism: acceptance of physical illnesses, but complete rejection of anything labelled a “mental” issue.

    I believe some regulars here have pointed again and again that this distinction between “physical” and “mental” illnesses is counterproductive nonsense, because any mental illness has a physiological basis in the brain, and as such is as physical as any other illness.
    And as such, should be approached and a treatment sought like for any other illness. In an ideal world, a patient (and a patient’s family) told that his brain has some issue should not feel ashamed nor dismissed.
    I recognize this is easy to say.

    This distinction is actually about socially acceptable ilnnesses: flu, broken spine or cancer are OK, but any condition defined as a mental illness, including autism, is to be ashamed of and hidden. This is about self-consciousness and social embarassment. One, or one’s child, should not make a spectacle of him/herself in public.
    This social self-shaming, I believe, plays a good part in Heckenlively’s current plight.

    I’m sure I’m wearing pink glasses right now. Issues with mental illnesses are certainly more complex than just social acceptance and self-consciousness. There are certainly challenging and frightening conditions. And I have no idea how to address them, be it at the individual or social level.

  18. #18 Edith Prickly
    September 19, 2011

    Someone also needs to explain to him that mental illness and the word “only” do not go together. It sounds like he’s another of those people who think that if you can’t see any physical symptoms, then you’re not ill.

    I had the same thought – that attitude says a lot about why he can’t let go of the idea that there had to be some outside force that caused his daughter’s autism. Why is the notion that she’s a victim of some nefarious pharma-conspiracy more tolerable than her autism being (most likely) genetic? Look at all the time, energy and money he devotes to chasing quacky theories and ineffective treatments. I can’t help having the uncharitable thought that it’s a way to avoid interacting with her disguised as parental concern. “See, look how hard I’m working to cure her! I’m not just keeping myself busy so I don’t have to ever confront the truly terrifying notion that she’ll be autistic all her life!”

    I also wonder if some of his daughter’s behavioural issues might improve if he stopped trying to “fix” her and just worked with her as she is.

  19. #19 lilady
    September 19, 2011

    Kent Heckenlively is so wrapped up in blame game. He still does not accept/cannot accept since his daughter was born 13 years ago, that sometimes children are born less than perfect. He has an inability to resolve his conflicting feelings due to his narrow-minded Christian faith…”I’m a good Christian, why would God visit this ‘imperfect’ child on me? Others who are ‘bad’ people or ‘non-believers’ have ‘perfect’ children, so why me?”

    So Heckenlively vacillates between Daddy Martyr role and Angry Daddy role…and actual revels in these roles. Neither of these positions show any healthy acceptance of his daughter, no less enjoyment of his child.

    I suspect that Heckenlively may have been emotionally stable before his child showed signs of autism. At the time of her diagnosis, I’m positive that family and friends offered support. But once he became fixated on his child’s prognosis and started acting out as Daddy Martyr and Angry Daddy…he alienated those same people. As a consequence, he has found comfort and support with the most rabidly anti-vax organization and people at AoA.

    He is so full of sh**, with his statement that he and his wife have no opportunities for respite. He resides in California and just keying in “Respite Care Autistic Children”, I find hundreds of sites for in-home or out of home respite. The California Department of Developmental Services regional office could advise him about in and out of home respite services.

    California also offers HCBWs (Home and Community Based Waivers) under the Federal Medicaid Law (Katie Beckett Waiver a/k/a Deeming Waiver a/k/a 2176 Model Waiver) which considers the level of disability and considers the disabled individual’s financial resources…not parental financial resources for eligibility for Medicaid fully funded in-home and out-of-home respite care

    Heckenlively needs to…even at this late date…get over himself…stop the role playing…stop the irreparable harming of his disabled child and his other child…and grow up.

  20. #20 Landru
    September 19, 2011

    Lilady, our child has been on the waiting list for the waiver list for over 5 years now (my state is not California).

    Not that this invalidates anything you’ve said. And not that we’re starving or agitating for the assistance. I know two other families in my state who are far more affected than we are–who might genuinely qualify as martyrs without being all Heckenlively–and who are receiving HCBW assistance.

  21. #21 Johanna
    September 19, 2011

    *reads awful article*

    *looks at author’s name*

    OMG. Is this guy in the SF Bay Area? It’s a long shot (and I hope I’m wrong) but I think I used to work with this dude. I always wondered how he took the revelation of Wakefield being a fraudster because, man oh man, did the Kent H. I’m thinking of really want that to be the reason for his daughter’s autism.

    Well, if it is the same guy, I guess I have my answer. What a shame…

  22. #22 Collin
    September 19, 2011

    You may be able to cure the disabilities autism causes, but you cannot cure autism itself. And you don’t need to. If you can see past the disabilities, there’s a gift in there.

  23. #23 blog.cordialdeconstruction.com
    September 19, 2011

    At the risk of diverting the discussion off on a tangent, the concept of genuine free will in a universe where everything that exists is the result of the actions of an absolutely omnipotent being seems even more absurd than the concept of genuine free will in a purely naturalistic, deterministic universe.

    Somehow a god created me and my free will, but it had no influence in how my free will turned out. Apparently it turns out that god does, in fact, play dice with the universe.

    -Karl Withakay

  24. #24 lilady
    September 19, 2011

    @ Landru: My child who was much more disabled (profoundly mentally retarded, spastic quadriplegia-wheelchair bound, immune-compromised/pancytopenia with a partially controlled grand mal seizure disorder and autistic-live behaviors) precluded me from having much “free-time” during his early years.

    When my son was released from the NICU at 2 months of age, he weighed less than 6 lbs and required every two hour intermittent tube gravity gavage formula feeding with digitalis medication administered through the gavage feeding tube. He was eventually weened from the gavage tube feedings after 3 months because of my around-the-clock care.

    After I came out of my “mourning/self-pitying spell” with the help of my close group of friends and family, I made a personal decision that life goes on, I was responsible for the emotional well-being of my 6 year old daughter and that sometimes life is tough and sh** happens. It also became a teaching opportunity for my daughter, who learned early on that stuff happens, individuals and families can get past adversities and that an emotionally well-balanced person and a functional family can cope and even find joy in having a child born less than perfect.

    Seven years after my son’s death at age 28, I continue my advocacy on behalf of disabled kids and their families.

  25. #25 Mu
    September 19, 2011

    I think free will is absolutely essential to make that whole omnipotent god concept work, without it all we’re doing is just preordained karma, not our fault. Not our fault, no sin, no punishment, no hell, no pressure.
    As for Kent, if normal parents of autistic children are looking for “anything but us” reasons why their kids turned out the way they did, how horrible must it be for a true believer for whom even the slightest prenatal cause is an immediate indictment of himself as he’s being punished for some past trespass. And as many true believers seem to feel the urge to atone for some perceived sin by slaughtering someone else for doing a greater sin, maybe Orac’s misgivings about Kent’s writings are not all that farfetched.

  26. #26 Sharon
    September 19, 2011

    This is one of the biggest problems I see with groups like AoA. It allows parents to stay stuck in an unhappy and unproductive space by perpetuating anger and blame. And promoting non evidence based treatment methods. Really unhealthy for all involved. And yes I do have a child with ASD.

  27. #27 lilady
    September 19, 2011

    Oops I forgot to mention, Heckenlively like my husband is a lawyer and has resources. I’m willing to bet that the medical costs over and above our insurance coverage that we paid out each year, far exceeded any medical costs that Heckenlively has accrued, since his daughter was born 13 years ago.

  28. #28 Landru
    September 19, 2011

    Lilady: you’ve far more right to bitch about Heckenlively than I have (as if these things can or should be measured), and good on you. I’m touched that you were able to adopt the attitude you did.

  29. #29 Ajax
    September 19, 2011

    How do they explain people like myself, who are both autistic and unvaccinated? Surely I’m not the only one.

  30. #30 lilady
    September 19, 2011

    @ Landru: It comes with the territory. I’m no saint but I have the ability to see what Heckenlively is all about…and it is not a pretty picture.

    I’m sure some well meaning people have said to him “God only gives these children to the parents who can care for them.” When that was said to me by some well-meaning people, my reply always was, “God made a mistake, he meant to give “my” disabled child to the family up the block”.

    Yes, I am angry and bitchy about Heckenlively for his sanctimonious posturing and his promotion of pseudoscience. I am absolutely beyond angry on behalf of his innocent children who are captive to his atrocious child rearing skills and his wallowing self-pity.

  31. #31 MikeMa
    September 19, 2011

    @Ajax,
    You sir, must be ignored. Swept under the rug. Hidden from view. There is a fellow who infests the comments now and again proclaiming you do not exist. Nice to meet you.

    If memory serves there are a number of Amish autistics.

    If you care to respond, why are you unvaccinated?

  32. #32 Sami
    September 19, 2011

    I can’t help but wonder how much of his daughter’s secondary health problems and behaviour problems are caused and/or exacerbated by the painful, unpleasant, and unnecessary quack “treatments” he keeps forcing her to undergo.

    Perhaps if he treated her with love and compassion, guaranteed nightly tantrums would be less likely.

  33. #33 Sharon
    September 19, 2011

    @MikeMa, Ajax is female. Click her name to see the great blog.

  34. #34 Nomad
    September 19, 2011

    I think something important was hit on in the comments earlier. Start with the concept that for the believers the mind is an immaterial entity known as a soul, and that the brain is basically just a spirit radio connecting your physical body to it. Now tell such a believer that there is a problem with their mind. I wonder if for them it’s tantamount to suggesting that there is a problem with their soul. I know that we seem to tend to take psychological diagnosis more personally than we would any other medical diagnosis anyway, but I wonder if believing that your mind resides in a perfect supernatural construct tends to make you less accepting of the idea of there being a problem with it.

    I had an ex with a somewhat different religiously founded problem. She was in the process of shaking off the shackles of a deeply religious upbringing and at the same time was starting to show strong symptoms of depression. It was starting to effect her daily life and I was urging her to seek help for it. Her response was to say that the problems she was having were somehow a challenge from god, and if she were to seek help for them she’d be admitting failure. I was trying to give her a religiously acceptable rationale, trying to play up the idea that even if we do have immaterial souls they are connected to us through a definitely physical brain, and that the brain can have problems just like the rest of our body. I never had any success. Like Orac here, I don’t feel that her parents were wicked, I knew that they loved her and were doing what they felt was the best for her. But nonetheless, words cannot express the anger I feel towards them for what they did to her.

  35. #35 MikeMa
    September 19, 2011

    @Sharon,
    Thank you for the correction. Nyms are so often gender neutral. Ajax put me in mind of Mr Clean for some reason. My mistake:D

    @Ajax,
    Sorry for the mis-characterization. I will check your blog to look for my answers.

  36. #36 Science Mom
    September 19, 2011

    And so on this Sunday I encourage you to pray for good things in the weeks ahead. I ask you to pray that those who are trying to help us will gain an advantage over those who would leave us in darkness.

    Am I the only one wondering what he is anticipating in the “weeks ahead”?

  37. #37 Ajax
    September 19, 2011

    @MikeMa No problem.

    Unvaccinated because I am 46, live in Austalia, missed out on everything but Sabin, I think.

    However, I “backed away from the light” at the age of 4 from, wait for it, Measles.

  38. #38 Sami
    September 19, 2011

    @Nomad: That’s not really how Christian doctrine about body/mind/soul works. A better argument for accepting help, as a Christian, might be that even if your challenges are sent by God, that doesn’t mean that total self-sufficiency is required. Bring up the flood story. (No, not Noah. The modern parable about the guy stranded during a rising flood, who refuses first a car, then a boat, then a helicopter’s assistance, declaring, “The Lord will provide.” After he drowns, he asks God why he didn’t help. The Lord answers, “I sent you a car, a boat, and a helicopter. What more did you want?”)

    The mind isn’t supposed to be some element of perfection. Our minds are human, and humans are flawed.

  39. #39 Andrew
    September 19, 2011

    Not quite on topic, but I’m reminded of this excellent article which compares group dynamics with “evaporative cooling” (http://lesswrong.com/lw/lr/evaporative_cooling_of_group_beliefs/) explaining why disconfirming evidence (like the failure of the world to end on a specified date, or the failure of the court to rule the way you predicted) makes belief stronger – because as the doubters leave, only the most devoted remain, in an environment where even fewer dissenting voices are heard (on the Internet, J B Handley calls that providing a “safe environment for parents” who wish to avoid debate).

  40. #40 JayK
    September 19, 2011

    Personal anecdote, I have a family member with twins, unvaccinated. One is autistic (Asperger’s) and the other is neurotypical. I’m not related to them by blood, but by marriage. I also have an autistic child (PDD), but that doesn’t matter.

    If anyone wants a fun facebook page to taunt the anti-vax, here you go, it appears to be run by Dr. Tenpenny:

    https://www.facebook.com/insidevaccines

  41. #41 Matthew Cline
    September 19, 2011

    @Ajax:

    How do they explain people like myself, who are both autistic and unvaccinated? Surely I’m not the only one.

    I think the most common response would be along the lines of: autism can be caused by a variety of environmental causes, vaccines being just one of them. Of course, after saying that, they still focus on vaccines. Then there’s various nutty responses, like that your autism was caused by vaccines your parents got, or that when you were a baby doctors secretly vaccinated you without telling your parents. Seriously, the “secretly vaccinated” thing was actually argued by a commenter on this blog.

  42. #42 Pareidolius
    September 19, 2011

    Angry man, angry god, and Heckenlively’s is s doozy of a sociopath who evidently inflicted great suffering on an innocent girl. That’s supposed to be comforting?
    I recently watched my best friend’s life shatter when her beloved, beautiful, smart, talented 22 year-old died of an undiagnosed, congenital brain anyeurism. There was no warning, and nothing that could have been seen or done to prevent it. Just gone in an instant. As we talked over the weeks after this tragedy rocked her world, she said that the only thing that gave her peace was that he didn’t suffer and that as an atheist/naturalist, she didn’t have to torture herself with an existential “why.”

  43. #43 Pareidolius
    September 19, 2011

    And another thing . . . the deep love and passionate advocacy for your children that those of you with disabled kids are displaying here has filled my heart with love and my eyes with tears.

  44. #44 Kay Walker
    September 19, 2011

    Mr Heckenlively is making life more unbearable for himself by continuing to drive his 13-yr-old daughter around in the car to stop her “tantrums”. Does he also not believe in behavioural and socialisation programs to allow his child the chance to do something less emotionally disruptive to herself and more acceptable to the majority of the family? I agree that he only sees his daughter’s life as an inconvenience to HIM- he should explore what HER world is like by carefully observing what circumstances lead her to be calm or agitated. She probably finds thousands of things in the household & outdoor environment confusing and unpredictable and her father doesn’t even bother to discover how to make her feel better. Instead he just says “the vaccine did it”, so I guess he thinks nothing about her can be “undone” in the way of training or teaching. What a foolish man.

  45. #45 lilady
    September 20, 2011

    @ Kay Walker: Heckenlively is totally incapable of self-analysis…so why should we assume that he has ever analyzed the “triggers”…such as fear of new situations and loud noises that might precipitate her behaviors. He is still locked into the junk science causes (vaccines, adjuvants and preservatives in vaccines as well as common viruses), of her disability. Even more unbelievable is his belief in the treatments that he has “tried” to cure the youngster. He has “tried” every quack treatment offered but his daughter has actually “endured” the risky, painful procedures.

    How could any loving parent observing even one blood draw on his frightened child, ever subject the child to hundreds of separate blood tests to test for heavy metals following chelation “therapy”? How could a loving parent schlep his disabled child to Costa Rica for the “miraculous curative” stem cell treatments, and put his precious child through an infusion of God only knows what substance through an IV line in her arm and intrathecal infusion?

    Even more unbelievable is the fact that when writes articles about these bogus dangerous “treatments” that he has paid quacks to inflict upon on his daughter, his cheering section at AoA praise him for his wonderful qualities as a parent.

    Orac, thank you for continuing your blogging about Heckenlively with heaping doses of insolence…and I will continue to comment about this loony child abuser.

    (I realize that as a Christian who only ascribes to science-based medicine and who criticizes a “good” Christian man, I will go straight to hell).

  46. #46 Reuben
    September 20, 2011

    I’m going to put personal and religious stuff aside and just make a quick observation in hopes that Mr. Heckenlively may read. (I know my comment will never go through on AoA.)

    Mr. Heckenlively, Hank – if I may -, the reason why we in the scientific community cannot do a vaxed vs. unvaxed randomized clinical trial is precisely because we are not evil. We are not evil enough to take a group of children at birth and randomize them into a vaccinated and an unvaccinated group. We are not as evil as to deny the unvaccinated group the known benefits of immunization for the protection against such things as whooping cough, influenza, measles.

    We are not a government in the Horn of Africa that has so abused their citizens that thousands of children are dying of both malnutrition and infectious disease. We are not so wicked as to let go of our (God-given) scientific knowledge and think that this study will benefit anyone.

    In fact, we are of such good hearts that we used our knowledge to understand that the odds ratio (derived from a more ethical case-control study) quickly approximates the relative risk (which would be derived from an unethical randomized study) when it comes to diseases and conditions which are relatively rare, like autism and all the other things you blame on vaccines. Those odds ratios from case-control studies have been done, and they show no association between vaccination and autism, Hank.

    You will say that there are plenty of unvaccinated children that could take part in a randomized clinical trial, Hank. But that’s not how it works. The randomization takes place BEFORE the exposure/non-exposure, and way BEFORE the disease/condition occurs. What you are suggesting is a survey, which has enormous faults due to selection bias (among others). If we do it your way, there is no way to control for the number of children who are unvaccinated AND have the condition and are not enrolled by their parents. Likewise, there is no way to control for the number of children who are vaccinated AND don’t have the condition and are not enrolled. These two circumstances would be the ammunition you, Hank, would use to move the goalposts when such a study would show what the case-control studies have shown.

    No, the evil in this world rests when people will not act to stop and even eradicate diseases through sensible, evidence-based vaccination and other medical interventions. Measles, like smallpox, uses humans as its sole incubator/reservoir. If we vaccinated as we should, that scourge would be gone from the Earth… forever. Where is the evil in that? Where is the darkness?

    No, Hank, we’re not evil. We’re the good guys. We’re the ones that wake up in this horribly flawed world and still go to work every day to help others who are sick and frail from succumbing to a terrible, terrible disease.

  47. #47 Th1Th2
    September 20, 2011

    the reason why we in the scientific community cannot do a vaxed vs. unvaxed randomized clinical trial is precisely because we are not evil. We are not evil enough to take a group of children at birth and randomize them into a vaccinated and an unvaccinated group. We are not as evil as to deny the unvaccinated group the known benefits of immunization for the protection against such things as whooping cough, influenza, measles.

    Oh you mean you’re not going to do more evil. I get it.

  48. #48 Th1Th2
    September 20, 2011

    . Measles, like smallpox, uses humans as its sole incubator/reservoir. If we vaccinated as we should, that scourge would be gone from the Earth… forever. Where is the evil in that? Where is the darkness?

    Here. Atypical measles is gone because you have stopped using inactivated measles vaccines.

  49. #49 Th1Th2
    September 20, 2011

    No, Hank, we’re not evil. We’re the good guys. We’re the ones that wake up in this horribly flawed world and still go to work every day to help others who are sick and frail from succumbing to a terrible, terrible disease.

    More than 700,000 people every year succumb because of iatrogenesis. What is your threshold level for being the good guy?

  50. #50 TBruce
    September 20, 2011

    Boring stupid insane troll is boring, stupid and insane.

    Please ignore.

  51. #51 Julian Frost
    September 20, 2011

    And Thingy shows up again.

    Atypical measles is gone because you have stopped using inactivated measles vaccines.

    Citation needed.

    More than 700,000 people every year succumb because of iatrogenesis.

    Citation needed.

  52. #52 Lawrence
    September 20, 2011

    Insane troll tries to derail another post – ignore.

  53. #53 Vicki
    September 20, 2011

    Kay–

    Good points, and it’s odd that Mr. Heckenlively isn’t seeing that. Regardless of why his daughter is autistic, she is living in the here and now, and responding to the environment now. People don’t react to most problems that way (at least, not entirely). If someone needs a cane to help them walk, they don’t say “but my problem is a brain bleed/MS/a car accident, and the cane won’t reverse that.”

  54. #54 lilady
    September 20, 2011

    Ignore the delusional troll. It is warped and needs “terminal disinfection”.

  55. #55 Squillo
    September 20, 2011

    Mr. Heckenlively’s post has been written before. It was called “The Book of Job.”

  56. #56 lilady
    September 20, 2011

    @ Squillo:

    If you don’t happen to have a bible nearby, you should visit Heckenlively’s article at AoA…where “Adam M.” posted verses from the Book of Job in 4 postings on September 18, 2001….as if Heckenlively needed any reminders of the trials and tribulations of Job to identify with the biblical Job.

  57. #57 Reuben
    September 20, 2011

    Job, really? From what I remember, Job lost absolutely everything and was even sick himself, had a bitchy wife, and even his friends turned against him. To compare all that to having an autistic daughter is, well, wrong. It just is. I don’t have a special needs child, or any children, but come on.

    They’re getting a bit too Biblical over there… And that can only lead to one thing.

  58. #58 Th1Th2
    September 20, 2011

    Julian Frost,

    h ttp://www.ncbi.nlm.nih.gov/pubmed/19203111

    Abstract

    Isolation of measles virus in tissue culture by Enders and colleagues in the 1960s led to the development of the first measles vaccines. An inactivated vaccine provided only short-term protection and induced poor T cell responses and antibody that did not undergo affinity maturation. The response to this vaccine primed for atypical measles, a more severe form of measles, and was withdrawn.

  59. #59 https://me.yahoo.com/a/icZyUQRjoeQFGS30SZYbEw4oChJAAZKcaw--#934fe
    September 20, 2011

    It’s so frustrating trying to argue against people like Heckenlively, because on one hand, not only is he completely and totally wrong, with no evidence except that of a proven charlatan to back his claims, but then for emotional impact he holds up his child for ridicule and pity to try to deflect any serious questioning. People who aren’t parents of special needs children, or aren’t disabled themselves, often seem to think such a life is some horrible nightmare, like the above writer who described what he saw as saint-like patience on the part of a dad with a child who didn’t show the normal signs of affection that neurotypical children do. It’s hard when your life doesn’t fit the script – but if you aren’t hard-headed and you don’t sit around feeling sorry for yourself and being absolutely bent on making your child be completely “normal” at all costs, financial, social, and emotional, you can find you life is still quite meaningful and rewarding. That’s why I don’t feel sorry for this man. He is abusing his child by treating her like a curse! I feel sorry for his child for being stuck with such an unloving father – not for him at all.

  60. #60 Denice Walter
    September 20, 2011

    @ # 59:

    Joe, I venture a guess that this stems from his black-and-white, all-or-nothing style of thinking. Inability to discrimainate shades of meaning or gradations of value ( thus not being able to see “some” meaning and reward) is probably somewhat out of his control however I also don’t see him seeking remedies outside the yea-saying echo chambre he frequents.

  61. #61 Supero
    September 20, 2011

    As someone who has a relative suffering from mental retardation and bipolar disorder, I find it hard to accept this man’s thinking. I understand how hard it must be to have an autistic daughter, but I don’t understand how any loving parent could regard their child’s autism as a curse, subject her to numerous invasive/unneeded quack treatments, and then pray to God to damn those of us who think that vaccines don’t cause autism.

    I think that Mr. Heckenlively could use a therapist………

  62. #62 lilady
    September 20, 2011

    Please ignore delusional disease-promoting Thingy troll.

  63. #63 Julian Frost
    September 21, 2011

    Th1Th2, you appear to have missed something in that quote you posted. I’ll highlight it.

    The response to this vaccine primed for atypical measles, a more severe form of measles, and was withdrawn.

    Nice work, though.

  64. #64 Ajax
    September 21, 2011

    @Denice Walter

    Joe, I venture a guess that this stems from his black-and-white, all-or-nothing style of thinking.

    Asperger’s. *nod*

  65. #65 Politicalguineapig
    September 22, 2011

    I touched on this in another post, but it always boggles my mind that a lot of parents from the Age of Autism and other places don’t bother to see or cultivate any potential in their kids. Sure, maybe the kid won’t go to college, but don’t they owe it to their kids to at least try to improve their lives-to teach them to be as independent as possible?

    For the record, I’m not neurotypical, as the saying goes. My brain’s wired a little differently, though I’m not autistic. I know two people my own age who are on the spectrum, though. He works on a wildlife refuge in Hawaii, and she’s a grad student. Their parents don’t think of them as damaged, and no one else around them does either.

    I think the real tragedy here is all the wasted potential. Heckenlively could, instead of cursing the skies and inflicting these “cures” on his daughter, simply try to communicate with her and find out what she needs.

  66. #66 Rongeur
    September 22, 2011

    Honestly, it’s the blatant ablism that upsets me the most about the AoA types. They’re all so focused on how they personally have been ~wronged~ by their child’s autism that the idea of trying to just accept and deal with their condition is utterly offensive to them.

  67. #67 Prometheus
    September 22, 2011

    Rongeur,

    I think it is less “abilism” than narcissism. So many of the most vocal AoA types are completely occupied by how their life has been “ruined” by having an autistic child and how it has to be the fault of someone else (i.e. it can’t possibly be genetic, because their genes and their gametes are pure and perfect).

    They are so self-absorbed that they can’t see how they are being duped by the HBOT/stem-cell/supplement/vaccine-conspiracy industry. They also see nothing wrong with subjecting their autistic children to risky, unproven (even untested – see: “OSR”) and painful “alternative” therapies, perhaps because they have so devalued their children’s lives that they feel death would be an acceptable outcome (some have openly said as much).

    It is the fixation on how autism has affected their lives and how “someone has to pay” – even if it is their child – that disgusts me.

    Prometheus

  68. #68 lilady
    September 22, 2011

    Heckenlively doesn’t need a therapist…he needs a visit from Child Protective Services and intensive case management. Painful, invasive, dangerous junk science medical treatments constitute child abuse. And, whether or not the child is abused by proxy by quack practitioners or Heckenlively actually inflicts the pain on his daughter, he is an abusing parent.

  69. #69 Politicalguineapig
    September 23, 2011

    Prometheus: I think you hit the nail on the head there. A lot of the Age of Autism parents don’t seem to get the central tenet of parenting: it’s not about them, it’s about the kid. Or they get so wrapped up in shielding their ‘damaged’ child from the world they forget to take a holiday.
    Rongeur and Lilady also deserve honorable mentions. I wish this blog had ‘like buttons’

  70. #70 Politicalguineapig
    September 23, 2011

    Prometheus: I think you hit the nail on the head there. A lot of the Age of Autism parents don’t seem to get the central tenet of parenting: it’s not about them, it’s about the kid. Or they get so wrapped up in shielding their ‘damaged’ child from the world they forget to take a holiday.
    Rongeur and Lilady also deserve honorable mentions. I wish this blog had ‘like buttons’

  71. #71 lilady
    September 24, 2011

    @ Politicalguineapig: Thank you so much for your kind words…but I also have benefited immeasurably by having Anthony in my life. I can honestly say his presence and the challenges of caring for him strengthened my marriage, my relationship with my daughter and with my supportive family and friends.

    Attitudes toward disabled children have changed…there is much more “acceptance” of them in the wider world “out there” since my son’s birth in 1976. People tend to have become accustomed to a child with physical, mental and behavioral differences…and that is the upside of parenting such a child.

    I knew from the onset that he was not going to have an easy or a long life…so I enjoyed him for the time he was with us. He touched the lives of everyone who ever met him or who only knew of him through his parents and his big sister.

    He lives on in our hearts and minds and in the lives of the recipients of his corneas and heart valves donated after his peaceful death in his sleep.

    Anthony was an extraordinary child and I miss his sweet vocalizations, his smiles and his giggles and we were given the gift of being donor-parents.