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Sometimes antivaccinationists reveal more than they intend about why they blame vaccines for autism

I had a long day in the operating room yesterday; so I was tired last night. As a consequence, I thought that today might end up being one of those rare weekdays free of new Insolence. Then, in the morning as I was doing my usual brief perusal of e-mail and blogs before heading to work, I noticed a post on that wretched hive of antivaccine scum and quackery, Age of Autism, that was such a perfect distillation of the reason why antivaccinationists refuse to accept all the evidence that autism has its roots largely in genetics that I couldn’t help but whip off a quickie post. The post revealed such an astounding hypocrisy, coupled with an even more astounding lack of self-awareness, that I couldn’t help but address it briefly (for me, at least).

Not surprisingly, it was Anne Dachel, who’s all in a lather because apparently an antivaccine comment was removed from an article in The Guardian by Christina Chew entitled Would you abort a disabled child? Unlike a typical AoA post, Chew was nuanced and caring in her analysis of the thorny ethical issues that prenatal genetic testing can result in. Dachel, on the other hand, works herself up into a fine lather because apparently the moderator deleted one of her comments, in which she denied a primarily genetic basis to autism. The comment itself was typical antivaccine blather, laden with straw men, such as how there can’t be a “genetic epidemic.” Personally, I don’t think the moderator should have deleted it, but then I’m much more tolerant of opinions that don’t jibe with my own. It doesn’t even matter much if those opinions are pure pseudoscience, as antivaccine opinions nearly universally are. I thought about writing primarily about the utter hypocrisy of someone like Dachel, whose own blog ruthless deletes comments with dissenting opinions, the better to create an echo chamber in which its antivaccine denizens feel “safe,” but instead this part of her post caught my eye:

This was very disconcerting for a number of reasons. First of all, the not-too-subtle message here is that kids are born autistic. When we have perfected genetic testing, it may be possible to detect which children will develop autism while they are still in the womb. This is a complete surrender to autism. Autistic children happen; there’s nothing we can do to prevent it.

No longer are we blaming cold, unaffectionate refrigerator moms for autism. Now we have our sites on the parents with defective genes that produce autistic babies. There’s no mention of kids who are fine and who meet every developmental milestone but who suddenly regress into autism. Even asking the question makes no sense. How can a disorder that no one ever heard about just 25 years ago now be something babies are born with?

And there you have it. Dachel is correct to point out that the “refrigerator mother” hypothesis of autism was pure crap that blamed parents for autism. That’s one of the rare things we agree about. Now note what she moves on to. Unfortunately, she thinks that accepting a genetic basis of autism is somehow “blaming” parents as well for having “defective” genes. In other words, Dachel admits something that I (and quite a few other skeptical bloggers) have been saying all along: That the reason some antivaccinationists can’t accept evidence implicating genetics in autism pathogenesis is because they view it as an attack on them every bit as much blaming “refrigerator mothers” for autism was. If it’s genes, then it must be their fault! One wonders if Dachel thinks that it’s the fault of the parents if a child with Down’s syndrome, Tay-Sachs disease, or any of a number of genetic syndromes is born. Does she view, for example, parents who have a child with sickle cell disease as somehow genetically inferior? It sure sounds as though the answer is yes. In any case, the genetics of autism is not single-gene alterations. It’s hideously complex, and we don’t understand it yet. We do, however, understand that there is a genetic basis, most likely highly complex and multigene, and it is not beyond the pale to imagine a day when we understand the genetics well enough to be able to test for autism prenatally, which makes Chew’s discussion highly relevant given that she has an autistic child.

It also points to a trait among antivaccinationists that seems to be ramped up to 11 all the time, and that’s a view that it’s impossible that they could have contributed to their children’s autism in any way, including biological. If autism is mostly genetic in nature, then it must be a slap at the parents of an autistic child, because obviously they must have had “defective,” less than perfect genes. Never mind that each and every human being has mutations and changes in their genes that could be considered “imperfect.” It’s part of our evolutionary heritage. I also suspect that denying genetics provides two other things they desperately crave. First, it provides them with the ability to blame someone else for their children’s autism, which they do in spades, blaming vaccines (which doctors forced them to accept for their children), the pharmaceutical companies who made the vaccines (which, of course, enticed the doctors to force the parents to accept the vaccines), and the governments that encourage them and require them for school entry (which, of course, in antivaccinationists’ eyes, protect the pharmaceutical companies that enticed the doctors to force the parents to accept the vaccines). Second, it allows them to have what appears to be a comforting illusion to them, that their “real” child was “stolen” by autism, thanks to vaccines, “toxins,” and whatever else. No, that autistic child in front of them can’t be their real child! Their real child is buried somewhere within, if only they could find the right combination of quackery to bring him back. I found an example just the other day in the (Un)Thinking Moms’ Revolution, in which The Rev writes:

GIVE ME MY SON BACK DAMNIT! I want HIM. I WANT HIM. I WANT NOAH PATRICK GOES! I want to squeeze him without his body going rigid. I want to hear him laugh at something that is really funny, not his brother crying. I want him to be able to tell me what he wants instead of pulling my hair in frustration. I want this baby in the picture. I want his sweet life so full of hope RESTORED and I want the institutions that harmed him brought to justice. NOW. That’s what I want and that is how I feel.

As much as I detest the antivaccine movement, even I can’t help but feel sorry for The Rev and even understand to some extent why she might feel this way, even as I decry the massive harm she and her fellow antivaccine activists cause with their fear mongering. To The Rev, the Noah in front of her is not her son; the Noah from before he started showing obvious symptoms of autism is. After all, she did everything right, except (in retrospect to her) vaccinating. In her mind she continues to do everything right and can’t imagine why her son is still autistic and has multiple health problems. To Dachel, it can’t be her genes that contributed to an autistic child. As misguided as her belief is, she believes that if autism is mainly genetic, then she is imperfect and her child is a daily accusation against her of that imperfection.

If it’s the vaccines, on the other hand, then it’s not Dachel’s “imperfection” that caused her son’s autism. It was an outside force that robbed her of her son. And if it was an outside force that robbed her of her “real” son, then maybe something can get him back. So instead of accepting the child that she has, she keeps looking for a child that will never be again, just like The Rev.

By Orac

Orac is the nom de blog of a humble surgeon/scientist who has an ego just big enough to delude himself that someone, somewhere might actually give a rodent's posterior about his copious verbal meanderings, but just barely small enough to admit to himself that few probably will. That surgeon is otherwise known as David Gorski.

That this particular surgeon has chosen his nom de blog based on a rather cranky and arrogant computer shaped like a clear box of blinking lights that he originally encountered when he became a fan of a 35 year old British SF television show whose special effects were renowned for their BBC/Doctor Who-style low budget look, but whose stories nonetheless resulted in some of the best, most innovative science fiction ever televised, should tell you nearly all that you need to know about Orac. (That, and the length of the preceding sentence.)

DISCLAIMER:: The various written meanderings here are the opinions of Orac and Orac alone, written on his own time. They should never be construed as representing the opinions of any other person or entity, especially Orac's cancer center, department of surgery, medical school, or university. Also note that Orac is nonpartisan; he is more than willing to criticize the statements of anyone, regardless of of political leanings, if that anyone advocates pseudoscience or quackery. Finally, medical commentary is not to be construed in any way as medical advice.

To contact Orac: [email protected]

330 replies on “Sometimes antivaccinationists reveal more than they intend about why they blame vaccines for autism”

Life with an autistic child isn’t what I planned, but she has taken me places that I might never have seen otherwise. We work with strengths (math and science) and cope with weak points (writing) as best we can. I see ADHD in my mother and Asperger’s like symptoms in my father and brother.

My daughter does tend to black-and-white thinking-part of her IEP is learning to be more flexible, something the anti-vaxers could use help with, too.

I truly feel sorry for these parents. These delusions are extremely harmful to them and their children. I have spent an inordinate amount of time teaching some of the most impaired individuals to express their wants and needs. Focusing on that would be so much more productive and everyone, given the proper crafting of the environment and fostering/prompting of responses, can learn to communicate.

I think you absolutely nailed it – their greatest fear is it’s genetic and they have no one to blame (but themselves if they really want to take it to 11). And it would also eliminate their cries for someone to do something.to give them their dream kid back – their whole self image would come crashing down. That can’t be!

Yeah. I’ve said it before, and I’ll say it again: the attitude that these parents have towards their children is sick, and I’m sure it makes their kids lives a hell of a lot more difficult than they would be. My parents refused to believe that I could ever have a mental illness, so instead of getting me the help I needed, I went through years of hell while they blamed everything from demons to my “sin nature” and “strong will” while my life fell apart, until it was entirely out of their control and I was hospitalized after my first suicide attempt. And after that, I was rotated through treatment after treatment and medication after medication as they “tried to get their daughter back”. It didn’t matter that I was right there, in front of them. I wasn’t their “real” daughter. (I wonder if that’s why my Mom couldn’t even bring herself to hug me for a few years, there.) And when I finally, after years of work, hit on a combination of drugs and therapy that started to help, they rejoiced that they finally “had their daughter back”. My father literally said to me, “I missed you!” I just wanted to scream, “I’VE BEEN HERE THE WHOLE TIME!!”

It’s an extremely damaging attitude, and even if they don’t *tell* their child how they feel, in those words (although, honestly, I wouldn’t bet on it), that attitude comes through loud and clear through a dozen different actions all day long. Autistic kids aren’t stupid. They know. And it turns a difficult life into hell. It’s also extremely narcissistic…even though these parents, I’m sure, would tell you that they only care about their child, it’s quite clear that they really see their children’s struggles through the lens of how it affects THEM. THEIR life is harder, now, THEY don’t get the desired response from hugging their son (no concept of how their SON feels when being hugged). I really feel for their kids.

It sucks knowing that your parents see you as some sort of changeling, left by the evil fairy people (or doctors, I guess), that they put up with while they search for their missing REAL child, at which point you’ll be banished back to the hell from whence you came, or something. (I honestly wondered, what’s going to happen to me when you get your REAL DAUGHTER back?) They’ve (we’ve) been dealt a hard enough hand as it is; they don’t need their parents, the people that are supposed to unconditionally love and support you, making it that much harder.

How can a disorder that no one ever heard about just 25 years ago now be something babies are born with?

We are living in a very fast-paced age, we are using today technologies which “no one ever heard about just 25 years ago” – or almost no one outside of specific scientific fields or sci-fi novels. And we are completely awash with mostly irrelevant information.
And yet, a number of us, and not just Dachel and her friends, expect to have a fair idea of what was known or not known at some point in the past. Or expect that all the important things are already known.
In a way, this is a frightening divorce from reality. It looks like a form of the Golden Age fallacy, except it’s not “it was better before”, but “it should be better now”.

Eh, if you want a disorder no one heard about just 10 years ago, there is the genetic syndrome my sister was born with. A few cousins got it, too. And most certainly other people before us. And yet, our doctors only pinpointed it with certainty a few years back.

As someone on the autistic spectrum, I hate the ‘stolen child’ idea, because it feels like it’s saying people like me aren’t valid as offspring. We’re not changlings left in the cradle when the fairies carried off your real child. We might not be what you expected in a child, but that is life. And trying to get your ‘real child’ back instead of helping the child you have adapt to a world that is strange and confusing prevents you from getting to know your real child and hurts him/her.

One thing I’m grateful for is that whatever misgivings my mother had in raising two kids on the spectrum, she accepted that that was the hand she was dealt, and she tried her damndest to avocate for what each of her children needed as individuals.

This way of thinking makes me so angry. Why does blame need to be placed at all? Differences in our genome happen, that’s just the way it is…without these mutations we’d all be wiped out by a single pathogen.

My brother has autism. He’s amazing with all of his little quirks and ticks. To me, he’s just as amazing as my other “healthy” siblings. The only real difference is that mentally, he’s essentially an 8-year old (he’s 25). The happiest 25-year-old-8-year old out there.

How dare these people assume that he’s not “perfect”. What does that even mean? I have scoliosis…does that mean I’m not “perfect”? My husband has blue eyes when the rest of his immediate family has brown…is he not “perfect”?

Unfortunately, these antivaxers can’t even see how ridiculous that sounds.

They’re like onions. Layer upon layer of denial, hatred, ableism, and narcissism.

“Me, wonderful me, with genes that can create a ‘damaged’ child? Nope. Not possible, I’m not like that“.

And all the while their children are being rejected, abused, accused of being changelings… Sad and infuriating.

It’s one of the risks of procreation. At any time, from conception onward, anything can happen to the being that’s created. Congenital defects, hereditary syndromes, autoimmune disorders, learning delays, cancers, accidents, sudden serious illness, you just can’t stop that. At any time your “perfect child”- the one you’ve dreamed about, made plans for, envisioned living an amazing life- can be sickened, injured, afflicted with any number of problems. That’s the risk you take.

Nobody’s special, nobody is exempt from the ongoing hideous lottery.

Anyone who believes that they are more deserving of being exempt from those rules, that they’re somehow superior to every other player in the game, is deluded beyond hope. That’s why we get the biomeddling ~Warrior Moms~, people who subject their child to quackery like ANPs for almost a decade*, and people who murder their “broken” children and claim that there should be no punishment because they’ve “suffered enough already”.

People who have HIV/AIDS and convince themselves that only they know the truth about it and, aided by dubious doctors, never take the precautions that would reduce the risk of vertical transmission. Then, when their child is born, they refuse to have them tested. When that child becomes suddenly and seriously ill the all-knowing parent and their woo-enabling doctor of choice still ignore the mammoth in the room, treat the child for a mild infection, and then sit by as she dies unnecessarily and in pain.

These deluded narcissists and their “professional” enablers are the real scourge, the ?real epidemic that needs to be stopped dead before more harm is done.

*Bob Blaskiewicz(?sp) you are truly doing a service by bringing the stories of the real Burzynski patients into the cold light of day.

Reading TOBPG is, at turns, infuriating and heartbreaking. I can see your frustration and pain in seeing the same awful story unfolding ad nauseam, and I want to thank you. You’re doing an amazing job.

EEB – I’m so sorry. I was hit with the religion stick too, “wilful, lazy, disobedient, wicked” etc.

Even into my twenties I was living at ‘home’ (too poor and ill to escape the abuse) and had been having terrifying new symptoms that exhausted me and caused horrendous pain, I was being blamed for deliberately malingering to avoid housework, berated for not honouring my parents (ugh). It continued right up until a potentially fatal neurological condition was diagnosed that could account for at least the previous five years of “idleness and disrespect”.

Empathic fist-bumps and e-hugs to you and the others who’ll tell much the same story here.

“How can a disorder that no one ever heard about just 25 years ago now be something babies are born with?”

That would be true of every single congenital condition ever identified for the first twenty-five years after it was identified. Therefore no congenital condition could possibly exist.

I wonder if the recent “perfect parent” idealization has a hand in this. I’m a fairly new parent with a toddler and I have been mouth-dropped amazed at how many other moms are practically obsessed with doing things perfectly to make their child as smart as possible. I’ve seen a mom in tears because her son hit a milestone a month late and she was terrified that he was stupid. And whenever I bring up my fairly casual parenting, some moms will quip that it’s good that I don’t worry about how smart my toddler will be. (Usually said sarcastically) I mean, some of these moms go all out to make sure everything is perfect- from birthday parties, to meals, to being ahead. The fact that I’m not concerned about my daughter not knowing her alphabet by now is alarming to them. (And don’t even get me started on the daycare rants!)

I’d wonder if this obsession with “perfect” genetics is just another side of this perfect parent thing.

@elburto, I almost never disagree with you, but “people who subject their child to quackery like ANPs for almost a decade” — specifically ANPs — are not trying to get rid of the child in front of them and get their “real” child back. They are trying to save the child’s life. They have been lied to and their child suffers cruelly and for no reason, but such parents do not deserve to be lumped in with curebies.

Dachel states:

There’s no mention of kids who are fine and who meet every developmental milestone but who suddenly regress into autism.

I suspect that she’s trying to say, “How can you have a genetic cause if the kid develops fine, then suddenly regresses?”. Apparently, she cannot believe that a genetic cause can have delayed onset. I guess she’s never heard of schizophrenia, which is most certainly genetic. The person develops fine for many, many years, then in late adolescence/early adulthood, the symptoms begin to appear.

I want his sweet life so full of hope RESTORED and I want the institutions that harmed him brought to justice.

The need to blame is powerful, yes.

Dachel implies that early developmental normality is evidence against a genetic basis. She appears to view development as a simple, uniform process that is entirely normal if it begins normally.

I don’t know if The Guardian‘s moderators for their health & medicine articles are the same as for their environment ones; I can say that when The Guardian publishes an article on climate science, plenty of pseudoskeptics, who will usually disagree with almost everything in the article, get to say their piece (so to speak).

Having read through the comments of Chew’s article, Dachel’s comment may have been removed for being off-topic (item #8 in The Guardian‘s community standards/comments policy) – which I note she did not make mention of.

IMO Chew’s article is about the issues surrounding deciding to abort or not abort a fetus which appears to have some form of disability, and whether (and what) societal biases can affect that decision. Blaming autism on vaccines does not seem especially relevant.

Life with an autistic child isn’t what I planned, but she has taken me places that I might never have seen otherwise.

Ruth, this is absolutely beautiful.

I wonder if the recent “perfect parent” idealization has a hand in this.

I shouldn’t doubt it.

The spousal unit deals on a regular basis with parents who insist to him that if their son/daughter is failing a class, is a discpline problem, or is less than Michael Jordan in athletics, it has to be the school’s fault. Or the state-mandated curriculum’s fault. Or his fault.

But it’s SOMEBODY”S fault. It’s impossible for them to grasp that their special, perfect offspring might be not very bright, lazy, clumsy, rude, etc and ad nauseum.

@Composer99

Dachel does have a tendency to go off topic from whatever article she’s commenting on. She invariably slags vaccines and brings in topics that are not at all related to the main article except by the fragile, ethereal, tangential thread of being about vaccines.

Orac:
“It was an outside force that robbed her of her son”.

A few random thoughts:

It suggests that these parents have returned to a primitive mode of thinking** like our distant ancestors who attributed negative outcomes – disease, ill fortune and death- to the machinations of a sorceror, witch or malign supernatural influence. In the morning of our species, death was seen as an outside force not as an intrinsic inevitability of life.

When people are caught in the throes of emotional conflict or disaster perhaps we all become more like or ancestors- a psychologist writing ( probably Kohler) 100 years ago remarked that if you are caught in a ravaging storm far from shelter, you, the modern, will also start thinking of weather or nature as though it were a person or malevolent spiritual presence, bent on your destruction.

Early psychologists looked at dreams, childhood, emotions, symptoms and ritual as evidence of a more primitive psyche underlying the rationality of our thought.

Attribution theory examines patterns of attributing causation for positive and negative outcomes which can affect how a person behaves: if I believe that my successes were due entirely to my native ability ( which I can’t change or control) I might not work very hard. If I believe they are at least partially due to the effort I make, I might work much more..

Often attributing evil to external forces preserves the fragile self-esteem that threatens a person’s feelings about themselves: perhaps the “imperfect” child is a threat to their own self worth that needs to be changed for their own benefit, not the child’s.

These parents’ mistaken beliefs about the causation of ASDs and their frantic efforts at “recovering” their lost child remind me of attempts by primitive folk at transformation by spiritual means ( changing the substance or identity) rather than reasonable transformation through education, therapy and the passage of time itself.

Goes denies that this autistic child is her own: she wants the real one back.

I am often struck by the mystical and emotionally-driven quality of much of what I read at sites like TMR.

** where’s my Frazer?

The ableism and sense of entitlement is always disturbing with these people. I worry that if they ever do come around to accept that there’s a genetic basis, they’d start pushing for eugenics programs. They already describe non-typical children as soulless shells acting as parasites. If they think they’re to blame for their genetic imperfections, it suggests to me that they’ll happily blame various hated minorities for their genetic imperfections and seek to punish them for it.

You also can’t sue yourself for your own genes (though I guess you could go after your parents, but I don’t think those cases–wrongful birth–have even been one.

@Todd – I made a statement a while back that autism seems to mimic the onset of schizophrenia – that certain defective switches were already in the brain, but weren’t tripped until some developmental milestone was hit……even if they aren’t related, the similar mechanisms are eerie.

I have a dear friend from High School (that’s over 18 years, folks) who just recently had her daughter diagnosed with autism. A few weeks before the diagnosis, she asked for references on autism: what it was, how it’s treated, how it’s diagnosed, etc. One of the resources I gave her was the Thinking Person’s Guide to Autism. I then got the chance to ask her how she felt.
She told me that she was afraid and worried, but she wasn’t angry. She understood that these things happen, and that there is very little anyone could have done to avoid it, if anything. She’s not a scientist. She’s a school teacher. But she knew enough not to blame anything.
And that’s the thing about having to blame something, why? Even if it is genetics, you don’t blame genetics for autism anymore than you can blame it for a sunburn if you’re fair-skinned. I certainly don’t blame genetics for being “big boned.” (Males on both sides of my family are over six feet and with extensive BMIs.)
But it’s very human to blame, isn’t it? Some of us want to believe that we were created by something perfect and so we must be perfect. Yet everyone on any end of any religious or philosophical spectrum will tell you that there is no perfect human being, and that autism, like other things, exists in a spectrum of imperfection.
I still can’t wrap my head around the whole “lost child” thing, though. It seems surreal to see a parent almost disavow their child like that. Of course, I’m not a parent myself, so that my disqualify to have a formed opinion… But I still wonder what parent would talk of their child that way?

@Lawrence

Indeed. In a post I wrote up addressing something that popped up on AoA a while back, I discovered in the course of my research that what we today call autism was once mistaken as childhood-onset schizophrenia or precocious dementia.

@ Rene:

Don’t Christians teach that ALL are imperfect? I can go with them there.

I think these parents have a problem separating their ideals from their realities about themselves as well as for their progeny.

@LW – I phrased it really badly. I don’t mean all parents who go down that path. I mean parents who see chemo reduce a tumour by 80% and then turn down radiation to spend six years feeding ANPs and various alt-med crap into a child who never responds.

All that time he’s ill from the “treatment”, on a severely restricted diet and chugging water constantly so that the sodium doesn’t kill him, getting awful infections and being repeatedly hospitalised for no reason other than that he was being poisoned by the ANPs.

It just upset me beyond anything, and dragged me right back to the people berating my former sister-in-law for choosing “slash burn poison” for her baby, saying that they’d “never put [their] child through that, she’s too special, god would show [them] a better path”.

So yeah, for clarification, I don’t mean people who fall for the Burzynski hype because that’s understandable, but people who force any “alternative regime” on their child for years, sticking to it despite lack of progress and watching them sicken and suffer, because god/the universe/whatever has said that their child should not have mainstream treatment, it’s a hot-button topic for me. Burzynski was just in the forefront of my mind because I’d been reading about it.

I loathe the whole system that enables those parents and guardians who withhold medical treatment from children who suffer because of that. It’s only a smallish group of parents with certain beliefs, like the belief that their child is too important to undergo the same treatment as the ordinary kids who just have “bad genes” or “ignorant parents who don’t know better”. Those who use their alt-med beliefs to create an air of superiority.

The only people I can compare them to are the women who picket outside of reproductive health clinics screaming about “wh*res” and “babykillers”, and then go to those same clinics themselves because their situation is different.

So my apologies for my earlier statement. Thanks for pulling me up. I promise I won’t post insomnirants without saving them for lateR, checking them over after caffeine (to slow me down), breakfast and pills, then c&p’ing after removing any nonsense.

posted for posterity:

Dachel, you got what you deserve. You are free to think that vaccine is the cause of autism but don’t impose your view on parents who believe otherwise. It’s not even a matter of evidence as every human being choose whichever evidence they believe in. If Dr. Chew believe in genetics to be responsible for autism, she is entitled to it.

Alain

Life with an autistic child isn’t what I planned, but she has taken me places that I might never have seen otherwise.

Life can pretty much be defined as “what happens while you’re making other plans”. At least that’s been my experience–you can either curse the fates and be miserable or hang on tight and do your best to enjoy the ride.

I’d wonder if this obsession with “perfect” genetics is just another side of this perfect parent thing.

I agree, Brittany. This was exactly what I thought of as well. I would even add in the comparison that women are made to feel inferior because of things like they had a c-section (it’s not my wife’s fault our baby was breech) or they do not produce enough milk to breastfeed. Because, you know, women were designed to give birth vaginally and to breastfeed. Therefore, if you can’t, you must be flawed.

Ren

And that’s the thing about having to blame something, why?

This harkens to the question I always ask about Wakefield. Even if you assume that his nonsense were correct, and that MMR did cause autism, what does that actually do for the parents of an autistic child? Aside from give them something to blame, of course.

Yes, it would help prevent others from facing it, but for people who are already in that situation, having someone to blame does nothing to help you (unless you use it to sue, of course)

@Denice – everyone’s an imperfect sinner who can only be saved through christ.

Even now, some of the absolute brainwashing and magical thinking rushes in, it’s horrifying. The sheer cognitive dissonance (necessary to swallow the whole system and live it) is outstanding.

@ elburto:

Fortunately I only know about what you speak of as an abstraction.

[email protected] – Oh the Mommy Wars are the worst. They seem to forget that there were plenty of women in the past who couldn’t birth vaginally or breastfeed, they just died in labour or lost their babies.

Congrats if this is a new bub!

There’s a lot in common there with the ~Warrior Mommies~, the dreams of the perfect “birth experience” or “parenting experience” seem to trump the fact that there’s a child involved who is the most important factor in the equation.

@Denice – I’m lucky enough that even as a little kid I could pick holes in the whole thing. I knew from the way my questions were responded to that I was on the right track.*

It may have taken thirty years to break free, but falling ill was the biggest gift of all in the strangest of ways. 1. The congenital problem I had been “cured of” (through prayer at age six) struck back almost exactly when my surgeons had said it would, all those years ago, if I didn’t receive intensive treatment.

2. A quarryload of extra free time+ a scarily voracious need to read = my mind not just opening, but splitting wide open.

*Hilariously enough my mother was a homeopath, alt-med fanatic, and diet enthusiast. I remember picking similar holes in all of that too, even when I was only seven or eight. It was her own fault, she’d armed me with the twelve leather-bound books of her 1960 “Arthur Mee Children’s Encyclopedia”, and all of the sciencey goodness therein.

This is, by and large, a generation of people who’ve been taught that they can achieve anything they want to and have everything they desire, if they just work hard enough and do things the right way. But it didn’t work. The one thing they wanted most – perfect, wonderful children – has been denied them. I think a lot of this is just born of bewilderment. They did what they were told and didn’t get the promised reward. For many of them it might be the first time it’s happened with something that matters. The world doesn’t work as it should, so there has to be something gumming up the works.
I also think it has a lot to do with the fact that parenthood has become a lifestyle choice, instead of something that everyone does. There’s a lot of pressure on parents to do it right if they’re going to do it at all. In some circles all one has to do is mention anything difficult to do with children and the immediate response is, “You chose to have them. Suck it up.” Which leads to a sort of reverse idea that it can and should be done perfectly, and that anyone who doesn’t is somehow a monstrous failure.
As Brittany said upthread.

These people don’t really like autistic people.
It’s depressing to me. It’s why I can’t stand to read them. How does their autistic child feel knowing they are so unwanted on their own terms? Autistic people are not demonic changlings after all. We are kind of nice people when you get to know us. Not robotic or lacking in empathy really.

If anything I’m hyper empathetic, especially towards these poor kids knowing their parents feel like that.

@Denice

“Don’t Christians teach that ALL are imperfect?”

They do. The Fall of Man caused all sorts of imperfections, including disease and disability. That’s why I don’t subscribe to the anti-vax and alt-med message of not introducing impurities into our bodies because “we’re perfect the way God made us.” Nope, not correct. We’re imperfect. Period.

@elburto

“everyone’s an imperfect sinner who can only be saved through christ.”

That speaks only to the soul of the believer, not the body.

But I better stop right there. Last time I brought up religion on this blog I got my ass handed to me by the non-believers.

“Also if you scratch woo, you’ll find religion.”

See what I mean? The goddamn allergic reaction so many regulars here have to religion without even thinking for one goddamn second that someone here might not think that they’re the end-all, be-all of all things… That we might hold ourselves to a higher power because we’re delusional or whatever.

I detest it. I really do.

Elburto –

Congrats if this is a new bub!

Nah, that was almost 5 years ago.

But I still fight against the “Mommy Wars.” I absolutely noticed it right off, how parents were all about one-upsmanship. It started on the mommy boards right after our first was born. Someone posts some “innocent” question like, “Is your baby lifting its head up in tummy time yet?” Barf. Hmmm, let me wonder…is yours? I don’t need the answer to that. My favorite is the person who boasted that his child’s head circumference was in the 95th percentile, so they must be doing something right. Huh?

The whole “milestone” thing you read about made me puke. When we went to the pede, he never even really bothered. Clearly, there wasn’t a problem, but, as Brittany noted, there are those that obsess over the things, and worry that if the kids don’t hit the mark then, whoa, they are defective!!!!!!

I

I also think it has a lot to do with the fact that parenthood has become a lifestyle choice, instead of something that everyone does

Good point.

What’s with “warrior moms”, anyway? If a baby actually needs its mother to fight, something’s gone very, very, very wrong somewhere along the line. Do they imagine they live in a warzone where feral doctors run amok stabbing all and sundry with vaccination syringes or something?

Yes, Andreas, some of them do. Doctors do not have their patients’ wellbeing in mind, because it’s all about the money for them. Either that, or they don’t have the education to understand how things really are, so they just go along with what they’re told by Big Pharma reps.
Those people live in a very scary world.

I think the “lifestyle choice” is only a factor because it’s a convenient route for the blame game and Just World Hypothesis. If the kid turns out badly, it’s because you did something to deserve being punished with a defective child and you should be ashamed for failing in your responsibility to be an infallible Super Mom.

Parents who accept that bad things can happen for no reason or outside of human control are in a better position to treat their child appropriately and accept them for who they are. I think it’d also serve to defuse the competitive environment of the warrior parent cliques because accepting the uncertainty of the world removes the stigma from coming up short of perfection.

@ Ren:

I think you miss my slant:
woo like religion is based upon faith- the “things unseen”- personally experienced, the interior world- whereas science, the legal system and journalism rely upon external evidence that allows us to show OTHERS what we ourselves experience

Woo, religion, art, poetry, fiction may try to communicate that interior set of feelings but do not need to show evidence: they do not rely upon evidence.
I have no problem with that UNLESS if woo masquerades as science.
Or poetry calls itself law. ETC.

ChrisKid

Yes, Andreas, some of them do. Doctors do not have their patients’ wellbeing in mind, because it’s all about the money for them. Either that, or they don’t have the education to understand how things really are, so they just go along with what they’re told by Big Pharma reps.
Those people live in a very scary world.

Well, if the Doctors would just look on the internet, they would actually get a real education.

@ChrisKid: Scary yes, but scary enough to pick up weapons and fight?

Methinks if you’re not on a government list of suspected terrorists you’ve probably got no business calling yourself a “warrior mom”.

Now we have our sites on the parents with defective genes that produce autistic babies.

Sites? We are erecting buildings upon parents? I am shocked!

** where’s my Frazer?

Set Frazers to ‘stun’, DW.

Methinks if you’re not on a government list of suspected terrorists you’ve probably got no business calling yourself a “warrior mom”.

I’d accept anyone with at least two deployments to Afghanistan or Iraq, m’self..

@ herr doktor bimler:

It IS a stunning work.

@ Shay:

Agreed.
The Warrior Mom leitmotif is rather popular @ TMR but they only fight with reason.

I received my first honor from AoA, I have been declared a pharma shill with selective memory who is frighteningly misinformed.

Great 🙂

Sources

Alain

How can a disorder that no one ever heard about just 25 years ago now be something babies are born with?

This seems to be a recurring theme in Dachel’s oeuvre. “I hadn’t heard of autism 25 years ago, therefore no-one else hadn’t heard of it and it didn’t exist.”

Twenty-five years ago, Courchesne had just published the first neuroimaging studies of autism. Uta Frith received her PhD in the field two decades earlier; Lorna Wing has been studying autism even longer. The UK National Autistic Society was founded in 1962.

The extent of Dachel’s willful ignorance is a never-ending source of wonder.

Ren: I still can’t wrap my head around the whole “lost child” thing, though. It seems surreal to see a parent almost disavow their child like that. Of course, I’m not a parent myself, so that my disqualify to have a formed opinion… But I still wonder what parent would talk of their child that way?

The one that broke my heart, in real life, was a mother my mother met who insisted that one of her twins couldn’t be hers because she was born with Down’s syndrome. (Fraternal twins, btw.) It got so bad the DS girl was taken home by her grandmother.
Weirdly, I have experienced some of this from my own mother. She’s educated, down with vaccines, and yet still tried acupuncture on me, and some herbal remedies on my sis. (To be fair, sis had awful migraines sometimes.) She did go to bat for me a sh*tload of times, but I never really felt I measured up in her estimation. Though, I’ve never measured up in *my* own estimation.

I think a lot of the reason why I escaped the “perfect parent” trap was because of my rather unusual upbringing and my perfectly sensible husband, with his extremely sensible family. I learned at a young age (14) about parenting an autistic child. He was only a sibling, but that is extremely powerful as a teen. I also learned about the unexpected and tragic, That same sibling died when he was 5, of unknown causes. Because of that, I *know* the feeling of the unexplained. Hell, I even blamed it on vaccines for a while. It was a comfort to blame something, to be able to say that I knew what happened. But somewhere in there, I realized I was kidding myself. I can’t say I’ve moved on, but I can say that I’ve come to some sort of terms with that unknown.

I apologize if I’m rather long winded here. This topic hits close to home on multiple levels. I have bipolar disorder and I know my daughter has a risk herself because of that. I grew up believing that I was defective and “making myself bipolar” because my parents just cannot believe they have such bad genetics. They absolutely denied my brother’s autism. They deny my other brother’s PTSD from Afghanistan. I absolutely do not want my own child feeling defective, no matter what gets thrown at us.

I gotta say I’m getting sick of the stolen baby thing these anti-vaxxers keep using. Being Autistic(diagnosed as an adult, childhood was just great fun) I can say that at no point did I feel like part of me disappeared, I didn’t change overnight. I am me, always have been and always will be. ‘Cuse any lack of coherency but communication bit difficult when emotions are running high in me.

How can a disorder that no one ever heard about just 25 years ago now be something babies are born with?

PS on Dachel’s ahistoricism: The Journal of Autism and Developmental Disorders started publishing in 1971. Forty-two years of publishing about a disorder that no-one had ever heard about. I wonder how they sustained it.

Dachel raised a strawman argument about “Refrigerator Mothers”. Most of those *warrior moms” were not even born when that “theory” was first proposed and advanced by Bettelheim. None of their “vaccine-damaged” children (Dachel’s child is about 25 years old)…has ever been diagnosed as the victim of cold uncaring parenting.

When I embarked on my *other career* of child advocacy 36 years ago, many of my early mentors were older parents of teenage and adult autistics (the individuals that Dachel and her groupies refuse to acknowledge their existence). They actually were tagged with the “refrigerator mothers” label. They were the ones who advocated for the passage of PL 94-142 in 1975; they were the ones who fought to have ALL special needs children educated in public schools. Our special needs children are the beneficiaries of their early advocacy.

Anne Dachel (and CIA Parker whose post is still up), tried to derail the discussion about aborting a fetus identified with a physical or developmental disability, to advance their own agendas about their “vaccine-damaged” children.

BTW, I believe if Dachel’s comment wasn’t removed, there would be many, many posters on Chew’s blog that would have challenged her about her affiliation with AoA, her Spamming behaviors, her support of Wakefield, Geier and other quack *practitioners* and her defense of invasive, painful, not-medically-indicated *treatments/cures* to *recover* a “vaccine-damaged child”.

a disorder that no one ever heard about just 25 years ago
Dachel’s child is about 25 years old

Yes, that would explain a lot.

@ Politicalguineapig:

None of us can ever ‘measure up’… because that internal image you have- a set of qualities or abilities or achievements- is an ideal. It’s not real. If you ever accomplish some of its requirements, new more difficult ones will pop up to replace them. And so on.

This is something we start developing in adolescence as we begin to contemplate the hypothetical, the future, many possible pathways and abstract perfection. They’re representations of goals that beckon us forward. They go beyond the current information we can ascertain by our senses. They’re things of the mind. Plans. Maps. That may guide us, push us but also torture us as we compare our actual state to an imagined one.

This is one of the reasons I like to study art, literature and religion: they function as ‘mirrors of the invisible world’- that is, a person’s internal life that exists quasi-independently of external reality- stories, images,myths, legends..
it’s the other side of perception.

elburto,

It was her own fault, she’d armed me with the twelve leather-bound books of her 1960 “Arthur Mee Children’s Encyclopedia”, and all of the sciencey goodness therein.

Those volumes started me on a path towards science too! The Wonder sections were my favourites, as I recall.

BTW I’ve been quietly chuckling about DW’s 7-yearly discarded beaus all day.

@ Brittany:

People are motivated to find the meaning and cause of what happens to them ( there’s even a motto:” to understand the causes of things”) – your parents were ill informed, rushed to judgment and unfortunately, you suffered because of it.

As I mentioned previously, there’s a human tendency to ‘fill in the blanks’ and I guess, a sense of closure in that. A tale can’t just be left hanging in the air, it needs a sense of finality. People deal badly with uncertainty – a prof of mine had a hilarious list enumerating the many ways we must cope with it , his finale being : “If you can’t deal with ambiguity, what are you doing in psychology?”

You obviously have a more healthy and realistic attitude about bipolar and ASD conditions than your parents did.

Just to quickly add to the ‘blaming genetics’ thing – de novo mutations don’t follow from the parent’s genetics, but arise anew (hence de novo). You can’t finger inheritance for them.

(My apologies if this has already been raised – haven’t time to read the comments at present.)

Denise,

Thank you. I wont go too in depth, but there was a lot more to my parents then that. Add in a good helping of religious fundamentalism (like, really crazy fundamentalism), a complete suspicion of anything that went against their worldview, plus they both came from their own dysfunctional families (who probably had their own forms of ASD and bipolar), and it was just a nasty disaster of denial.

I don’t hate my parents. I just want them to stand back and see the harm of what happened, to start thinking about something other then themselves. Similarly, I see an anti-vaxer in same manner. I know exactly where they’re coming from, yet I wish many could stand back and look at things objectively. I guess I find that sad and I really, really feel for the kids that grow up thinking they are somehow damaged or “stolen” because their parents couldn’t deal with the unknown.

While I do agree that the denial of autism as a genetic condition is largely driven by, and let’s be frank, a certain vanity, I also think there is another element at play. Guilt. Guilt that early signs that a child may not be developing typically were missed. It may soothe the conscience or appease the ego to believe that autism is something that happened one day, especially with so strong a focus on starting early intervention as early as possible.

While I do agree that the denial of autism as a genetic condition is largely driven by, and let’s be frank, a certain vanity, I also think there is another element at play. Guilt. Guilt that early signs that a child may not be developing typically were missed. It may soothe the conscience or appease the ego to believe that autism is something that happened one day, especially with so strong a focus on starting early intervention as early as possible.

How can a disorder that no one ever heard about just 25 years ago now be something babies are born with?

I’d heard about it 25 years ago, and I’m fairly sure many people have heard about it since the 1930s and 1940s, when it started being used.

Perhaps Dachel is unable to distinguish what she knows with what others know. I think that’s an ASD diagnostic, so perhaps this is a data point for the genetic hypothesis.

@ Brittany: Oh, girl, I feel for you. Your family sounds a lot like mine. My folks are both very religious, both active in ministry, I was homeschooled, the whole nine yards. And even though a lot of people told them over the years that there was something medically wrong with me, for whatever reason, they chose to listen to the people who said I just had a “strong will”. When it became obvious that I was also a lesbian (um, I’m not very good at passing, I’ve pretty much been out since I was 14), it was even more evidence that I was demon possessed. The only therapist I saw was an unlicensed “ex-gay” therapist, whose treatment plan consisted of exorcisms. Honestly, as horrible as my suicide attempt was, and the subsequent hospitalization, I am thankful that it forced my parents to recognize that I didn’t have demons, I had bipolar disorder.

Of course, after that, as I’ve said, I don’t know that it was all that much better, as my parents did a total 180 and suddenly loved doctors and medications, as they frantically tried to get their “real daughter” back. So I’m not autistic (though I do have a younger brother on the spectrum), but I know what it feels like to have your parents a) disregard your needs and difficulties, only seeing your illness though the lens of how it affects them, and b) treat you like a changeling or a placeholder, an imposter masquerading as their child, and openly express their desire to get rid of you so they can have some mythological other perfect child back. (Talk about ableism and eliminationist rhetoric!) I don’t know if they honestly believe that mentally ill children are devoid of feelings, or if they just don’t care and think it’s their right because having a non-neurotypical child makes their lives so much more difficult.

I posted something similar to this on my blog and facebook page, the last time Orac quoted some of these parents, and the responses I got made my blood boil. You wouldn’t believe the number of people (or maybe you would) who said things like, “Of course kids with mental problems are broken!” and “You have to admit that they’re not normal” and even “How dare you talk about your parents like that! You have no idea how hard it is to raise a child with mental illness!” (Apparently, being a child with mental illness doesn’t count. I’m sure they see that as a walk in the park.) I ended up having to draw a hard line, and let people know that ableist comments wouldn’t be accepted, anymore than I’d let people drop the n-word in the comments. (Of course, then I had to define ableism, and listen to people scoff “political correctness”, but whatever.)

Oh, and Brittany, I am so sorry, more than words can say, about your brother. My baby brother–he’s “my” brother, the one I took care of the most, because Mom was so busy when he was a baby–is on the spectrum and has learning disabilities. I can’t imagine how devastated I would feel if I lost him; he is such a light in my life. He’s one of the big reasons I haven’t left home, yet, and probably the main reason I kept from killing myself over the years–I knew I had to stay and take care of him. And even though he has his own struggles, he was the first person in my family to know I was struggling with anorexia, even before I did, that’s how strong out bond is. He’s 18, now, and just got his first job, something we didn’t think would ever be possible. And my baby, the one specialists said might never be able to write or read (and didn’t until about fifth grade), just handed me the first chapter of a zombie novel he’s writing. Yes, it’s one paragraph that spans four single-spaced typed pages, but he is writing a story, for fun, when it used to take hours and at least one meltdown to get him to write three sentences for homework. I just can’t imagine my life without him, and thinking about your loss just guts me. Again, I’m sorry. Thank you for sharing your story.

On the topic of “where was autism 25 years ago?”…

I don’t know if this article has been linked here, before. (Unfortunately, I’m an irregular reader.) It’s from 2012, a review of Fred Pelka’s “What We Have Done” but I just read it and found it absolutely amazing, a must-read for a lot of reasons, but a perfect answer to that question. It’s actually a direct response to Anne Dachel.

Where Are the Elders with Autism?

Quote: “In order to understand why one doesn’t find large numbers of autistic adults in our nursing homes, one must begin by noting the degree to which disabled people were incarcerated and otherwise kept out of public view for much of the twentieth century. In the early part of the century, the eugenicist notion that disabled people were responsible for all the problems of society put disabled people in state institutions (Pelka 2012, 9). People with disabilities were considered a social evil that would destroy society just as disease would bring destroy a body (Pelka 2012, 11). They were therefore quarantined, kept away from nondisabled people, and stripped of their right to travel freely and to associate with others.

@ EEB:

Well, they might have been correct about one thing: you have a “strong will”.. and a strong identity and sense of yourself, in a healthy, independent way. More power to you.

LIfe is hard for everyone- however, it’s worse when societal conventionality loads additional burdens on you.
Best wishes to you and your brother ( AIIII! Zombie novels- well, at least it’s not vampire)

It’s not surprising that Dachel knows essentially nothing about genetics: she trained, as I recall, as something akin to a general education major who hoped to specialize in teaching high-school history. It is surprising that someone like Dachel feels competent to comment on genetics.

I wish that some of the anti-vaccine wackos who repetitively post genetics-related drivel would make even a rudimentary effort to understand genetics. The genetics of human adult stature would be a good place to start.

Like ASD, human height is highly heritable: tall people tend to have rather tall children, and short people tend to have relatively short children; as for ASD, the heritability estimates are ca. 80 to 90%; as in ASD, hundreds of genes are involved, and the assortment of those genes gives a rather continuous spectrum—there is no “height gene” just as there is no “autism gene”; as in ASD, some exceptionally affected individuals result from clearly de novo mutations, including copy number variations.

That’s not blaming the parents. That’s just the way it is.

DW: None of us can ever ‘measure up’… because that internal image you have- a set of qualities or abilities or achievements- is an ideal. It’s not real. If you ever accomplish some of its requirements, new more difficult ones will pop up to replace them. And so on.

Hmm. I’ll noodle over that- I’ve never really thought about it that way.

#64 Oh come on, it’s fun blaming our parents for ridiculous things. I usually start with my nearsightedness and depression and then move on to blaming them for being tone deaf and liking Hawaiian shirts. Usually I’ve run out of energy by the time I get around to blaming them for my second toes being as large as my big toes and then we all settle in to watch a movie instead.

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