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.
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.
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.
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.
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.
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.
“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?
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.
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.
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 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.
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.
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.
Also if you scratch woo, you’ll find religion.(TM)
@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.
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.
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.
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.
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 also think it has a lot to do with the fact that parenthood has become a lifestyle choice, instead of something that everyone does
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.
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.
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.
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.
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.
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.
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.
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.
Yep! A regular Diana Nemorensis I am.
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.)
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.
Just say ‘no’ to censorship.
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.“
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.
Also Greg, go away.
#70 My folks are religious too, but they’ve been wonderful about everything and have actively assisted me in dealing with depression and many of the other problems of life. They’re not perfect either, but that in itself is a comfort to me.
Some theologies accept atypicalities better than others.
Oh yeah, that was pretty much like my upbringing, except I went to a private Christian school. When I hit my worst years, my parents took me to doctor to doctor to find out why I was “wrong”. If the doctor didn’t give them an answer they were looking for, or a pill to cure me, they went looking for another. In my earliest bipolar years, I remember being diagnosed as ADD. My doctor looked the doctor straight in the eyes and said, “Girls don’t get ADD” and that was that. I did have one suicide attempt when I was 17 and I found out, literally last year, that my Dad told my (not at the time) mother-in-law that he wished I was a drug addict and not mentally ill. My mother-in-law was confused by that statement (after chewing him out for even thinking it), but I know exactly why- he could “blame me” for drugs, but he can’t technically blame me for mental illness. Never stopped him though.
To my parents, I’m broken. My brother was fine up until he came home with PTSD, then he was broken. They don’t see that I am happily married. They see me as choosing a poor mate because he’s persuing a “girl” career in nursing. They don’t see me as a parent, they see me as someone who has a daughter and isn’t trying for a son. They don’t see me as a straight-A college student, they see me as going into a “worthless” career. And they don’t see my brother as a proud soldier pursuing a career as a firefighter. They see him as a “dangerous” person who is out to get them. It’s very hard to think that your own parents only see your faults and not what you’ve accomplished, in spite of bipolar disorder.
Argh, I typed a long comment and then lost it!!! The upshot is, WELCOME MORE BIPOLAR FOLK, YAY! And also that frm the earliest I can remember as a kid, I actually thought of *myself* as a changeling, and recognized my dad as another, and I would seek out friends who also seemed to me to be changelings of a sort. What I did not realize at the time was that what I thought of as changeling or Fae-blooded was, in fact, my earliest recognition of the signs of ASD. I guess my weirdo upbringing had some advantages amid its drawbacks.
IMO, the best explanation of the changing DSM autism diagnostic criteria is the one published by Professor Roy Grinker.
That’s THE Roy Grinker from GWU, who Jake Crosby trashed for “bringing down the reputation of GWU”.
lilady – Kanner’s the one who came up with the “refrigerator mom” hypothesis. Bettelheim was just its most well known promoter. Yes, it’s pedantic to correct that.
That’s THE Roy Grinker from GWU, who Jake Crosby trashed for “bringing down the reputation of GWU”.
the fact that he couldn’t be more projecting if he tried with the strength of a 14 Tesla magnet is perhaps, the understatement of the year.
Sometime in my 20s I decided to get in a general practitioner. So I tried with a family doctor I had met at the university health clinic when I was a student. Her practice was full, so I went to one of her partners.
At first I was disappointed that this family doctor had spent a great deal of his residency in psychiatry before becoming a family doctor (it was not that common thirty years ago!). Little did I know how important that was to get relevant advice, and even more importantly referrals when my firstborn did not progress normally.
I wish there was no stigma attached to seeking mental health answers. It is complicated, but still it does not harm to seek help. It was provided to me when I lost my mother when I was a child by a very wise stepmother, and there is just not enough proper support for those who think “too differently” in our society.
Face it: mental health services in most countries are woefully inadequate.
One of the reason which I decided (lately) to do research on cognitive development in autism is not about me (I’m fine as it is), but instead, if I have a child; I will know what to do.
@ dedicated lurker: You’re not being pedantic…I scrambled my sentence and didn’t give Kanner credit; I did “credit” Bettleheim for advancing the theory of refrigerator mothers.
I think (know), what bothers me about Dachel and and her colleague *journalists*, is how they refer to their children as “lost”, “stolen”, “soulless”, “vaccine-damaged” and “train wrecks”…and how their groupies never find those atrocious comments offensive.
Their *treatments/cures* aimed at *recovering their autistic child* by abusing them behind closed doors by shoving bleach up their rectums, chelating and castrating them and subjecting their children to other horrific procedures, is sadistic.
Cripes almighty, I do detest them, because they indulge in pity parties, they libel and slander anyone and everyone who is not in lockstep with their collective mindset…and they cannot accept their special needs children.
Long time lurker here just thought I’d share a good piece that Newsnight did last night on the measles outbreak in South Wales including an appearance from Ben Goldacre.
Sorry not sure who’ll be able to play it.
lilady – Exactly! (comment before this one). Sometimes it seems as if they might really believe that enough painful and degrading treatments will “convince” the child to be “normal”. That’s what makes me so upset.
@Krebiozen – I used to read those things from cover to cover. If I close my eyes I can still smell them. They got me interested in science, languages, history*, and everything else. I loved the little French lessons with the comic strips that had the first panel in French, the second in literally translated English, and the final one in English. By the time I started studying French in school the word order seemed natural to me.
My mother begged her (estranged) father to let her have them because my “But WHY?” questions (and subsequent four mile round-trips to the main town library) were exhausting her. She’s since said that if the internet had been around in the early 80s I’d be a terrifying knowledge-beast by now. Like that’s a bad thing!
@Ren – Didn’t mean any disrespect, just personally distancing myself from the sort of thing that almost destroyed me. Being brought up with the idea that there’s only one right way is soul-crushing if you know that can never be possible for you. I get that others don’t experience it as a negative and destructive force, I’m happy for them (really!), just eager to keep the past where it belongs.
*There was a slight historical issue. My infant school teachers were incredibly puzzled about my passion for The Empire and Commonwealth. Ahem. The 1960s history (and language used to describe it) in my beloved tomes had obviously been set in the black and white concrete of print, and was somewhat inappropriate in an 80s classroom!
Good of you to point it out – I get an UK-only message.
Interesting bulletin from MedPage, referring to a study just published in JAMA. The anti-epilepsy drug Valproate, when taken in pregnancy, results in a substantially increased risk of autism and autism spectrum disorders.
The association of autism and Valproate in humans was proposed years ago, but the early study involved a small population. The current study is from Denmark, and involved all six hundred thousand children born in Denmark over a ten year period (1996-2006).
A brief look on Wikipedia suggests that Valproate is associated with a much higher level of congenital issues than other drugs, but apparently works for some cases of epilepsy that don’t respond well to other drugs.
A quick Pubmed search on valproate and autism turns up 133 citations, with the majority of recent papers involving rodent models for autism. One possible explanation for the valproate-autism correlation might be that the drug interferes with biochemical pathways that may also be subject to genetic influence in some individuals — in other words, that the drug mimics the effects of some combination of gene alleles. There seems to be a lot of material about the developmental biology of the central nervous system in the presence of this substance.
Someone might want to introduce her to Kari Aalto and see how that routine goes over (something something pedicurists something).
@ EEB, Brittany
Please have my thanks for telling us your stories. It’s helping me to put some things in perspective. And makes me less ignorant.
Talking about parents whose children have no chance of measuring up, there is this line from the movie Gattaca:
“If you keep looking for flaws, you will only be seeing flaws.”
Not guaranteeing accuracy. And cold comfort, I’m afraid.
That’s ringing a bell. Come to think of it, that’s normal thinking for me. Easily feeling not good enough. Or building a perfect image of the people around me, and feeling betrayed when they reveal themselves not as good as I believed.
I will certainly mull on this.
The anti-epilepsy drug Valproate, when taken in pregnancy, results in a substantially increased risk of autism and autism spectrum disorders.
Passing that on to relevant family members.
Good article here by a woman who was antivax – until her daughter caught pertussis. It explains quite a lot.
(I haven’t read through all the comments yet, so apologies if anybody has already posted this.)
My wife is a brunette. I’m red-headed. My son was born with dark hair but is now blonde. I know what you’re thinking, but no, the milkman isn’t blonde. It must be the vaccines. Sure my father has blonde hair but hair colour can’t be genetic. Where did my dark-haired son go?
“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.”
To be fair, if that happened in the maternity hospital after the twins’ birth, the mother could have had post-natal psychosis. Mothers with PNP often don’t feel their baby is really theirs; in this case, a handicap like Down’s could have triggered this delusion.
“Face it: mental health services in most countries are woefully inadequate.”
That’s almost an understatement. When I had my last major breakdown, I was post-partum and showing psychotic symptoms. My own therapist recognized his lack of post-pregnancy knowledge and I was referred by a family friend to a post-partum psychologist. After two sessions with her, she told me that I needed parenting classes and daycare because I obviously couldn’t parent. I ended up in a psych ward two months later because of a breakdown. It sucked, but proper medication and identifying the root problem was my ticket back to the real world. But what irks me is that I was obviously having major issues and the first psychologist just wrote me off as a hysterical new mom.
It’s why I’m trying to get my husband to choose psychiatric nursing once he graduates. He knows the system through me. When he had his psychiatric clinical, he impressed everybody with how he interacted with patients. Most of his classmates were absolutely terrified of psych patients, but my man was doing Zumba with them and holding conversations. The mental health world could really use some great nurses and doctors.
I’m glad someone is appreciating the stories. I feared we had strayed too far off topic and I’m not really a regular commenter here. (I read RI daily, but I’m a German major, so I leave the sciencey stuff up to the scientists. I just sit back and learn)
This is something I have known about for a long time, from my involvement in therapeutic drug monitoring. Because ASDs are themselves associated with seizures this can be a self-perpetuating problem. If you are female and on valproate, use effective contraception.
Is Valproate the same drug as Depakote? If so, I find that interesting, I’ve never heard of that and I’ve been on Depakote for about two years now. I knew it was associated with lots of problems in pregnancy and afterwards, but I’ve never heard the autism connection.
I am extremely grateful the Great Vaccine Debate/Scam wasn’t around when I was a kid, because I sometimes suspect my mother would have gotten sucked in, even though she was a child during the ’40s and ’50s and saw the horrors of polio, measles and diptheria first hand.
Why do I think she’d have been sucked in? Lately she’s taken to wondering if it was something she did during pregnancy or my early childhood that caused my Crohn’s Disease, fibromyalgia and endometriosis. Was it the drugs she took to ensure she didn’t miscarry? Was it not giving me enough milk? Was it… you get the idea.
My response? “IT HAPPENED, Mum, and if it was something you did, you did it thinking you were doing the right thing, and didn’t think I was going to get sick years later, so I forgive you.”
Now if I wanted to I could blame her crappy genes for the Crohn’s Disease (2 cousins diagnosed sufferers, grandmother, great grandmother and great aunts likely sufferers, another cousin going through the tests at present) and probably the endometriosis (similar history of really crappy reproductive systems). But what would be the point?
Yes, Depakote is a brand name for valproate.
@ Ren & others:*
PGP and Helianthus:I appreciate your interest. That’s why I’m here. To serve. I think.
*Like elburto, I need to be a little clearer: I would never want a religious person to think that I scoff at their faith or them- personal faith is important, part of who they are and it can “move mountains”, as they say. I have studied religion historically and as a cultural phenomen and hold a position like Wm James ( in Pragmatism): we know faith by its consequences ( I spent a lot time reading James). It can be a motivating force for civilisation and in the case of Christianity, a force for widespread literacy, which has changed the face of thought in the west, as well as an impetus for personal transformation .
When I say, woo is disguised religion, I mean exactly that: it masquerades as science but is actually a question of faith- based upon “things unseen”, not research. In the case of faith, questions addressed or articles of faith are ultimately un-testable, not subject to human experimentation- *beyond nature*. No one knows if there is life after death or not or if g-d exists. And we can’t test it. Thus, people go with their inner beliefs or tradition or personal revelation because our arguments and research can never answer those questions. It is a personal question, beyond the ken of others who observe another person from without. I don’t think that my atheism is “better”- perhaps believers have the edge on me and I envy a few I know well.
Much of woo depends upon concepts like Xi, prana, psychic energy, a life essence or soul substance bubbling up in humans that enlivens them and determines health. Again, there is no physical evidence of this. However, alt med folk don’t like being refered to as being faith-based, they want to be science. BUT they don’t follow the rules.
Much of what woo addresses however, unlike religion, is testable: they say they can heal or claim that specific substances cause specific changes in bodies or cause illness. We can test if herbs can affect depression or if vaccines cause autism. And we already have done so.Information transends the limits of personal experience.
Although we have data these questions, advocates don’t accept them because the results are contrary to their beliefs. Nothing wrong with that, just don’t call it science or teach it as research.
I venture that the organising priciples in alt med come from the same vast reservoir of internal, pre-linguistic, emotionally laden contents that are our common human heritage – while I’d never go with inherited ideas- but thematic contents that are in part reactions to common life situations throughout our history: human relationships, moments of transformation, danger, fear, love, hate, community. These can be codified or ritualised or speculated about as religion, philosophy, art , literature and tradition- they emanate from human experience. They also aren’t science and can’t be tested or even really evaluated –
although art and literary critics might think otherwise.
They aren’t science but a separate sphere beyond it AND another avenue for understanding our species.
May I just express my profound gratitude to all of you (us) who have shared deeply personal stories of chronic mental and physical illness, and of neurologic difference? These stories make us human.
@EEB, elburto, Brittany – I thank you as well for sharing your personal stories to illustrate the damage done by parents who refuse to accept their “non-typical” kids and put their own needs first. It’s a testament to all your individual strengths that you’ve gone on to create meaningful lives for yourselves as adults and that you’ve managed to forgive you parents (or at least distanced yourselves emotionally) for the the damaging way they treated you as children.
Now I hope you’ll forgive me for wanting to smack all of your parents upside the head and give them my undiluted opinion of their “values” and behaviour.
I think that people such as Ren, me and others who post here, and who have a professed religious faith, serve “a purpose”. We are proof positive that there a groups of people within the science community while still retaining our religious beliefs.
Besides, I have the ability to empathize with people who post here believing that G-d sends us misfortunes. I also have the ability to *engage* those who claim a *special knowledge* that is not available to the *ungodly*. My knowledge of the bible serves me well in this capacity because I am able to quote chapter and verse from the bible.
I can connect through the 149.x.xxx.xx:443 proxy here.
I also appreciate the personal accounts. Although difficulties/ disagreements with parents can be painful- and even destructive- to the child, often they can serve as a spur on to an EARLIER independence and ultimately allow a person to do more and become more of whatever they choose for themselves.
This is never an easy transition, even when there is agreement / peace between parents and children- that’s why diverse cultures since pre-history have evolved complicated *rites de passage*- ranging from walkabout to university graduation to help smooth the transition.
Sometimes family strife speeds up the process and forces people to create their own ways to cope and understand – on the run , as it were.
Telling our own stories is part of this grand endeavor.
Completely off topic, but I needed to read something like that today. So, thanks Denice.
I aims to please, eNOS.
Newly published research continues to be unkind to the vaccine-autism hypothesis.
One study that could directly affect my work in pathology is Yale research reporting strong correlations between macroscopic and microscopic abnormalities in placentas and autism risk:
“The at-risk placentas had as many as 15 trophoblast inclusions (and abnormal tissue folds), while none of the control placentas had more than two trophoblast inclusions. Kliman said a placenta with four or more trophoblast inclusions conservatively predicts an infant with a 96.7% probability of being at risk for autism.”
The idea is to begin interventions at birth rather than waiting several years until diagnostic signs and symptoms develop.
Not sure how this will fit into the antivax narrative, except they’ll have to blame vaccines the moms (or previous generations) received.
Also, there’s a report on a promising vaccine against a Clostridium species that’s supposedly responsible for exacerbating autism symptom severity. It looks like there’s consternation over at AoA on how to approach this (the lead article notes the “irony” of a vaccine to combat “vaccine damage”, but mainly focuses on differences between research studies as to just how prevalent gastrointestinal disorders are in autism). Since prevalence figures are all over the map, Anne Dachel figures that if the set of researchers who disagree with her are “wrong”, then surely the overwhelming body of research that disputes a vaccine-autism connection must be wrong as well.
All in all, not a good day on the antivax front.
With no real proof to the idea that vaccines cause autism, it is just a lame excuse. Why are parents trying to find something or someone to blame. Their child is still their child. It is their responsibility to love them no matter what. Instead of wasting time blaming, they should be spending time with their child. Even though the number of autistic children has gone up in recent years, doesn’t mean there is anything to blame. Better technology and resources help doctors identify the disorder. Twenty some years ago, the symptoms were chalked up to a disobedient child. Parents need to stop looking at what is wrong with their child and start looking at all that is right. Vaccinate your child or not, that is your decision. Until the real answers are discovered, no one will know who is right and who is wrong. The debate will continue until that day comes.
We had the third IEP meeting for my eldest daughter today. (Children receiving services must be re-evaluated every three years to determine whether they still qualify for services and what the goals and such will be.) So her new IEP is being written, to become effective in the fall with the new school year. I love our school, and I am so proud of my daughter. I had been told when she was in 1st grade by the speech therapist that she’s seen lots of girls like her, and they’re all mainstreamed by fourth grade. Well, she’s going into fifth grade next year, and she won’t be mainstreamed yet, but she’s still made enormous progress. I am very proud. She holds conversations now, although she still has difficulty telling whether or not the person she’s talking to is actually listening, which has led to some misunderstandings. She still has her snits and meltdowns, but they do not last long. Ten minutes, rather than the whole day. She’s devastatingly brilliant, and although she doesn’t think she’s very attractive (there are significant self-esteem issues there), she is actually very beautiful. And popular! Even kids who aren’t very comfortable around autistic kids do like her. They just don’t know quite how to interact with her. But there are some really awesome kids at her school. I’m amazed every day. Most of them just give her space and give her opportunities to join in, and otherwise let her initiate conversations. They’re not close to her, but they clearly don’t dislike her, and would probably quickly open up if she knew how to get the ball rolling. And she’s getting closer to knowing how to do that. She still will be in the special classroom most of the time next year, even though we’d hoped for her to be mainstreamed by now, because she clearly still will benefit from that. But she has made great progress, and I cannot thank the school enough for having the patience and wisdom to give her the opportunities to blossom.
She is on the autism spectrum, but she is my child. I never lost her. I just got to know her. 😉 It’s unwise, as a parent, to go into the thing with some expectation of what sort of child you’re going to have. You really don’t know, and given how many different sorts of people there are in the world, you have a roughly 100% chance of being disappointed in some way if you do that. Your job isn’t to have a perfect child, whatever that means anyway. (Seriously, who gets to define “perfect”?) It’s to love your child.
I can understand parents trying all sorts of things to help their child with autism. Even the “curebies” I can understand. Some of them surely have fallen into the “changeling” trap, and the “recover my child” language is abhorrent to me, but a lot of autistic kids do suffer, and it is heartbreaking as a parent to see them in pain. When my daughter was in first grade, and would have meltdowns where she was throwing chairs and spitting and threatening to bite….. That was bad behavior that if it continues will get the kid in really serious trouble, but besides that, it’s obvious the kid’s in serious distress. You can’t sit by and watch them be so unhappy that they lash out at everything in reach. To be unable to play with other children, to be teased, to fail to progress academically because they’re too emotionally upset to concentrate, to be so saddened they want to “go to heaven”, that sort of thing. You want to take all the pain away and make them better. There is a slippery slope in that, though. You have to be careful not to become too desperate to help them, since your desperation will make you less discerning, and a dreadful mistake could be made. And it’s very open to the language of demonic possession, if one is of a faith background that believes in that sort of thing. (I’m Christian, but do not believe in demonic possession. Not that kind, anyway. Maybe in a metaphorical sense.) And then things can get very sinister indeed, very quickly.
I think another part of the problem is that most parents are not at all prepared to deal with an autistic child. With our culture’s emphasis on “can-do” and self-sufficient families, there is a resistance to seeking help, and that can easily lead a family to get overwhelmed before they realize that it’s happening. Caring for the autistic child has taken over their lives, and the lives of all the other siblings as well, and now resentment starts to set in. I don’t know what the solution to that is.
@ Denice, 101:
I agree entirely. I also think that people who view faith as a virtue, who are comfortable accepting implausible beliefs, are easy targets for various quackary.
The church I was brought up in was filled with woo. Most people didn’t go to doctors, they saw homeopaths. Part of it was a huge distrust of secular science and the government, part of it was the naturalistic fallacy (and the belief that God put plants on Earth to help humans), part of it was the strain of independence and libertarianism that went along with conservative Christianity, the same reason people gave birth at home “off the grid” and made their own food/clothes…you didn’t need to see a doctor, you could get a book on herbs or homeopathy and diagnose, medicate, and heal your family on your own. (And maybe part of it was that Mighty Mom competition…when you are only allowed to find fulfillment as a wife and mother, is it any wonder that moms competed so fiercely to be the most perfect, extreme Mom possible? “Not only did I give birth at home, naturally, homeschool 15 kids, make all our clothes by hand and grow our food and raise animals for eggs milk and meat…I’m also a doctor and pharmacist!”)
I get frustrated with my own mom, because she is absolutely dedicated to homeopathy. I have tried and tried and tried to explain the absolute impossibility of homeopathy, that it’s nothing more than magic, to no avail. She believes that it works, and has numerous stories of bruises that faded quickly because of Arnica, or cramps that stopped with MagPhos, and she even believes she was able to turn a breech baby through a combination of reflexology (which she also studied) and homeopathy. Explaining things like confirmation bias and regression to the mean have been pointless, as well: she saw it, she believes it, and she finds it incredible that I don’t believe homeopathy works because, “You saw what happened! You were there when *insert story of miraculous healing here*!”
Her reasons for believing homeopathy are identical to her reasons for believing in God, the few times we’ve discussed religion after I “came out” as an atheist. 1) Personal experience. It doesn’t matter that she can’t explain how or why it works, or that the mechanism is simply impossible, she believes she’s seen homeopathy work. She also believes that she’s seen answer to prayers (and, again, is incredulous and angry that I don’t agree, especially about answers to prayer that concerned me…she can’t understand why I give the doctors and nurses credit for saving my life after a medical crisis instead of God) and personally experienced God’s presence, and finds other explanations to be stupid and blasphemous. 2) She is totally unconcerned with the fact that there are inconsistencies and impossibilities, with both religion and alt med. She’s perfectly comfortable saying “It’s beyond my comprehension” or “I’ll have to ask God about that.” Whether she’s responding to contradiction in the bible or a question about how water retains a memory, it doesn’t bother her that it doesn’t make sense. She takes it on faith. She believes it works, that’s good enough for her, and “how” doesn’t matter at all. (We, uh, don’t talk about religion much, anymore, for obvious reasons.)
@ Calli Arcale, #111
“I never lost her. I just got to know her.”
That is so beautiful, thank you. Your daughter is lucky to have such a supportive Mom. I’m glad that she’s making such good progress!
My brother is about to graduate, this year. I’ve attended many of his IEPs over the years…when we first started him in school (after my mom finally acknowledged that she couldn’t homeschool him, because of his challenges), we were told that he would never be mainstreamed. But by High School, he only had two resource classes and was mainstreamed for all his other classes! He was also able to play sports (it helped that he had a very understanding and caring coach who put him in a position where he didn’t have to memorize complex plays–which would have just frustrated and humiliated him–and tutored him after practice). He’s planning to attend community college in the fall, and since it’s a public school, they will continue his IEP there…his resource teacher has already had a conversation with the counselor at the local CC, and will transfer all his records so there will be as smooth a transition as possible. I’ve been blown away by the amount of support he’s gotten, the progress he’s made, and it makes me cry when I think that the kid who was never supposed to read or write is going to start college in the fall!
I hope things continue to progress well for your daughter, and you both continue to get the support you need. She sounds lovely. And, again, I really love what you’ve said. I wish all parents had that attitude.
Mark my goddamn words. I will not ever again discuss religion with any of you. It always boils down to how someone was hurt by it, how someone missed out on something because of it, or how better their lives (not mine) is without it. And you’re not the only ones. I refuse to discuss it with the antivaxers who pray upon a god to destroy people like me who work in public health. I can’t win, so I won’t even play the game.
My goal is not to offend or insult all religious people, at all. I understand that people have different beliefs and metaphysical philosophies, and to the extent that people respect and accept my lack of belief, I try to do the same. I also know that it’s impossible to say that all religious people are *insert stereotype*. Even within individual faith groups–heck, within individual churches–there is a lot of variation.
When I talk about the experiences I had as a child/teen with the church I grew up in, I understand that they aren’t representative of Christianity as a whole (which is why I tried to qualify it). When I talk about conversations with religious people, I am necessarily limited by my own experiences. So if I say something and you think, “Wait, I’m a Christian, but I don’t believe/behave like that” okay, I’m sure you don’t, so I’m not talking about you. I’m talking about those Christians (or other religious people) that I’ve personally encountered, the type of Christian I used to be.
I don’t judge all Christians based on what I endured as a child; that would be ignorant. However, I did experience a lot of negative, damaging things, stuff that’s taken me years to heal from (that I’m still healing from, in some ways), and I will not ignore or excuse them because “not all Christians are like that” and some people may be offended. Again, if you aren’t “like that”, fine: I am not talking about you. But there are a lot of people out there who have hurt me, and many, many children like me, in the name of God and Christianity, and I refuse to pretend otherwise.
I’m an atheist because, as an adult, I examined the evidence of Christianity, the internal consistencies of the bible and orthodox theology, the history of the religion, and compared it to what I was learning about science, history, sociology, and psychology. And I decided, based on the evidence I had, that Christianity did not reflect an accurate understanding of the universe–nor did any religion and/or supernatural belief system. That doesn’t mean that I am contemptuous of those who have examined the evidence and come up with a different opinion, or that my opinion will never change…if I am presented with good evidence that a God exists, of course I will be willing to change my mind. But I haven’t seen such evidence, yet.
I apologize if I communicated otherwise or caused offense in what I said. That was not my intent.
I hope you don’t stop talking. I’ve enjoyed reading what you’ve said about faith in this thread. I’m also a believer and a skeptic. I’ve found this particular community to be among the less rejecting of that situation than most. On other forums, I’ve had knock-down drag-out fights, the sort of lose-lose situation you describe. And when that happens, it’s *bad*.
And that’s fair. I think a lot of atheists go that way. But for me, it’s not as simple as the physical understanding of the universe. I don’t believe in God because I think Christianity tells me how the universe works. I believe the universe has everything in it that we need to know to understand how the universe works; you don’t need faith to do that, and in fact if faith closes your mind, it can actually impede the search for knowledge. So obviously religion to me isn’t a question of knowing how the universe works. As far as I’m concerned, we can figure that out for ourselves. That’s what science and exploration are for. No, I believe in God for reasons that are much harder to explain. I think the simplest explanation, though, is that I’m in love with the idea of a loving God who wants us all to take care of each other. Which, when you get down to it, is the core message in Christ’s teachings. So that’s why I’m a Christian. Not to find out where the Universe came from or why we have two legs instead of four. But because i think that Christ really did have the answer to how to make the world a better place. (An answer that is at once simple and probably impossible given human nature, but it’s a good thing to aspire to.)
EEB:When I talk about the experiences I had as a child/teen with the church I grew up in, I understand that they aren’t representative of Christianity as a whole (which is why I tried to qualify it).
Actually, it’s very representative, at least here in the US. And your experiences sound eerily like a friend’s. (Who I’m actually very worried about at the moment..)
Sophia8: I don’t think it was PPD, as it didn’t extend to both twins.
Just don’t, PGP.
Ren: I hope you don’t stop talking.
#114 You’re not the only one who feels that way.
@ Becca Stareyes #6
“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.”
Exactly this. I had no idea that we would have an autistic son, but given some of my family traits, I should have. I was screened as a CF carrier, but autism never crossed my mind.
My son is a 4 y.o. carbon copy of my brother (who has never been diagnosed btw), who loves hugs, and insists on reading me his storybooks. His favourite thing to do is put his hair in curlers (he likes the velcro ones…).
He is who he is. He’s not broken. He is my son, and I hope I succeed in being just like your mother.
Narad: Hey, I’m only reporting on observed behavior. Go lurk at :http://www.patheos.com/blogs/nolongerquivering/2012/05/no-longer-quivering/
and follow the breadcrumb trail of links. Or just read any post on there. Or read the news coming out of North Dakota or Missisippi. My area is fairly sedate, but that’s just the culture around here.
Calli Arcale: A loving God who wants us all to take care of each other.
*Shrugs* As far as religion is concerned, I like Jesus, but I really can’t deal with God. Have you read the Old Testament? He hasn’t changed a bit since then.
Pgp: You should have listened to Narad…but no you keep posting about your biased generalities about other posters’ religious beliefs. I find your comments from your very narrow perspective, insulting and juvenile.
I’m a Christian…and a skeptic…and my comments are based in science. I’m also have a great interest in other religious beliefs…in fact, I find those beliefs fascinating.
Politicalguineapig re your link at #121
the Quiverfull Movement is not mainstream religion.
In Dachel’s Media update today she writes about the placenta study and work done to find autism markers in blood, and concludes:
So there you have it. Anne Dachel’s admitted it. It’s all about “blame”.
From a certain Mahayana perspective, one might say that “if you want G-d, then you’ve got G-d.” This is another way of looking at the notion that “attaining Enlightenment” is an oxymoron.
(Or, to invoke Ethan Allen, “the gods of the hills are not the gods of the valleys.”)
I’ve long wondered if that was the case.
I’d like to point out that a few cancers are genetic in origin. But if a child came down with one of them, the response wouldn’t be to blame the parents, but to be sympathetic to them because “there but by the grace of God go I”. I don’t understand what’s so horrifying about a genetic basis to autism. i certainly don’t blame my parents for my autism, and my dad is almost certainly on the spectrum himself.
I just realized that Rain Man came out in 1988. Clearly Autism did not exist before that movie!
So, can we blame it all on Tom Cruise?
I do find it cute that the Dachelbot’s new, incisive catchphrase in her entries is “I posted lots of comments.”
And how old was the rainman character? So at least the movie suggested autism existed long before 1988.
I just realized that Rain Man came out in 1988. Clearly Autism did not exist before that movie!
Oh how time flies.
Actually we might have to go back another 3 years to the savant twins in “The Man who Mistook His Wife for a Hat” and blame Oliver Sacks. Or we could blame Darold Treffert.
@Renate – I believe Dustin Hoffman’s character was supposed to be in his 40’s – which means we’re talking about autism back in the 1940’s (and his would have been considered a fairly severe and recognizable case, but guess what, he was institutionalized and not recognized for what it actually was – you know, better diagnosis now and all).
As for blame, only the anti-vax guys are assigning blame – the scientific community is only trying to understand, diagnose earlier and help treat……huge difference.
Dachel’s opinion doesn’t make sense – people don’t blame parents for having a Downs Child……
Dachel’s opinion doesn’t make sense – people don’t blame parents for having a Downs Child……
You forget the worryingly widely held belief that we can control our genetics through positive thinking. Bruce Lipton, who really ought to know better, is a good example.
o.O O.o O^O
the Dachelbot’s new, incisive catchphrase in her entries is “I posted lots of comments.”
As someone once wrote of Shakira’s pelvic gyrations, “Do you think she knows she’s doing that? Maybe it’s a nervous tic or something.”
hdb – a pelvic nervous tic?
Oh, I read too quickly. But, still.
@ herr doktor bimler:
‘Rainman” was supposedly based on Kim Peek ( see wiki).
@ Calli Arcale:
You might be surprised that I agree with you although I would put it a different way.
I came to atheism through family tradition: my ancestors were associated with liberalism and atheism since the 1890s or so; others were agnostic or weak-tea Christians. My father wasn’t a believer at all but did not preach and was not publicly vocal about it- others were more vocal. ( I have a very interesting trans-Atlantic family with odd business and political ties). A few relatives married religious people and followed their spouses’ traditions.
You capture some of what Freud wrote ( from an entirely different perspective) that religion serves as an explanatory system, a code of ethics and as a protective force ( a parent ,so to speak). He summarised that now we have science, law and we’re adults- we don’t need parents any more- so we don’t really need religion ( probably in “The Future of an Illusion”).
I value the basic Christian message of people being brothers and sisters, of helping those weaker than yourself, of forgiving, of not ‘living by the sword’, of looking at your own faults, not others’, not putting wealth first, seeking peace etc.
I also see Christianity as a force that changed civilisation and human development – not purely through its message, but through its focus on literacy and delay of instinctual gratification. Societies shaped by Christianity are different .
I studied Wm James and would go along with him: it’s not what a person believes but what they do with it. We can’t “prove” if g-d exists or not, or is a metaphor for the forces that shaped the universe and creatures like us.
Jung used J-sus as a symbol for the self. I might say he can illustrate our aspirations or the ideal image of what a person might be.
The “lost child” concept is harmful, indeed, but not exactly unreasonable for someone whose child’s personality, level of affection, and developmental skill level ACTUALLY CHANGED. Maybe it’s not unlike Schizophrenia… I have a hard time believing people don’t sometimes feel they “lost” their loved ones to delusional thinking and severe personality and behavioral changes.
In my experience as an early childhood educator, my perception of whether a child regressed or not was often different from a parents. Parents often miss subtle signs of autism. Or, the kid says Ma, they say they said mama, but then they never progress and keep just saying ma. Then the kid gets a label of ASD, and instead of (like I realized with my own child) understanding that the child was never actually saying mama, they say “My child regressed. They used to say mama and now they don’t.” That’s all very poorly phrased but I think the point is pretty clear. I have seen this with children with a variety of disabilities and not just autism.
The idea for Rainman was inspired by Kim Peek (who, ironically, did not have autism. Not all savants are autistic. Certainly not all autistics are savants).
The character and personality also had much influence from Mark Rimland, Bernard Rimland’s (founder of ARI) son.
The idea of “blame the parents’ is very damaging. Can you imagine someone arguing at home, “Can you believe it? This new study seeks to blame us!”
How is a child supposed to react to this? My parents don’t want to be “blamed” for me? Great, they want to blame someone else? Why blame?
We would then go into the “I don’t hate you, I hate your autism” discussion. Also damaging.
While I won’t go into detail about a very complex subject, suffice it to say that often when a person ( or family member) is diagnosed with a serious illness/ SMI/ or loses abilities- functioning, there is a period of adjustment ( some might say ‘mourning’ ). Parents may lose their dreams for their child’s eventual independence or future but usually they don’t feel that the actual child has disappeared. ( I sometimes counselled families with a member who had a SMI). They may wish for the past.
I read many writers @ AoA and TMR and some appear to fall into the ‘stolen child’ category. They had built up a very grand idea of how their child would achieve or develop and then had their dreams quashed by a diagnosis. To be truthful, I wonder perhaps if there had been no diagnosis at all and the child was absolutely average, if they might also feel cheated or robbed because he or she wasn’t as spectacular as expected.
As a side note, there are many parents who live vicariously through their children’s activities or achievements- more like a “second chance” for themselves to succeed – which probably leaves out the child’s wishes and interests neatly.
Small children may have unrealistic dreams because they’re children – all would be a sports legend, pop star or famous inventor- adults shouldn’t be encouraging or elaborating that dream world further- but bringing it back down to reality whilst retaining hope.
lilady – Kanner’s the one who came up with the “refrigerator mom” hypothesis. Bettelheim was just its most well known promoter. Yes, it’s pedantic to correct that.
I don’t think that’s true. Here’s Kanner in 1971, in a follow-up study of the 11 children whom he reported in 1943, adamantly denying any authorship of mother-blaming psychogenic hogwash (please excuse length of citation):
Kanner also complains about the problem of ‘diagnostic substitution’. The DSM-II did not recognise autism as a clinical entity, and children thus afflicted could only be diagnosed as “Schizophrenia, childhood type”.
Autism, like many other medical conditions, has a genetic component and environmental triggers. Valproic acid looks to be one of them and others may include air pollution, PBDEs, plasticizers, and other environmental toxins.
Disagreements about the portion contributed by the genetics versus the epigenetic components are being studied at major academic centers. Clarity will take years but it will come.
A reason to seek out these triggers–and to diagnose autism early–is to decrease the numbers of families and children whose lives may be more difficult because of ASD. Obviously, these children and adults are not lesser people than those without ASD, but their lives are often harder and create financial hardship for families.
Respect for families whose children have these learning and behavioral differences should include educational opportunities, financial support from the insurance community and the government and more research to prevent and care for the more disruptive and emotionally painful aspects of autism.
The personal revelations of those affected by autism, mental illness and other differences are incredibly valuable and moving. Thank you having the courage to relate those stories to us all.
I love this essay:http://www.our-kids.org/Archives/Holland.html
herr doktor bimler: Bettelheim, who, IMO, had major psychological issues, did publicize the “refrigerator mother” theory of autism, but Kanner, I believe, first referred to cold maternal parenting (by mothers mostly) as having a profound effect on the child’s withdrawing into her/his self:
“Leo Kanner, Mothers and Autism
Bill Long 12/8/07
One Step Below Divinity..or Screwing it all Up?
Anyone who seeks to write a history of autism in the 20th century must come to grips with one of the most powerful and debilitating characterizations of mothers of children with autism that came from mid-century: that these mothers were cold, unfeeling or “refrigerator mothers.” I haven’t found the first usage of this term, but Leo Kanner, in an interview with Time Magazine published in the July 25, 1960 edition, characterizes parents of autistic children as “just happening to defrost enough to produce a child.” When this kind of language is used in combination with Bettelheim’s psychoanalytic terminology that seeks to blame parents for “Joey, the mechanical boy,” you have a strong assault on parents. Two of the greatest American psychologists, one a Freudian (Bettelheim) and one skeptical of Freud’s claims (Kanner), were telling parents in the 1950s/1960s that they may be the cause of their child’s autism. For parents who were/are struggling with lingering issues of guilt and anger anyway, this tonic is about as refreshing as a December Seattle rain shower. What I propose to do in this essay is to trace Kanner’s attitude towards parents back to 1935, when he published the seminal work in English in a new discipline–child psychiatry. My thesis is that even Kanner’s early work reflects a deep ambivalence about the role of parents, especially mothers, in creating the psychological debilities of their children.
“Thus, when Kanner turned to his study of children with autism in 1943, he was already inclined to think that mothers, especially, messed up children. Now, when he had children with autism before him, he reiterated his theory.
“In the whole group (of the parents of children with autism), there are very few really warmhearted fathers and mothers….Even some of the happiest marriages are rather cold and formal affairs,” (citation in this essay).
Kanner in 1960
By the time we arrive at Kanner’s 1960 interview with Time, 17 years later, we have a further evolution in Kanner’s thought, though he still has definite opinions about mothers. But he nuances his thoughts as follows: on the one hand he affirms the value of mothers as more important than the psychologists.
“There is no raid shelter from the verbal bombs that rain on contemporary parents. At every turn they run up against weird words and phrases which are apt to confuse them no end: Oedipus complex, inferiority complex, maternal rejection, sibling rivalry….blah-blah, blah-blah.”
In contrast, Kanner gave this exhortation:
“Let us, contemporary mothers (is he a mother?), together regain that common sense which is yours, which has been yours before you allowed yourselves to be intimidated by would-be omniscient totalitarians.”
It sounds like Kanner is trying to “rewrite” the historical record, as we say. Mothers now possess common sense, a sense that helps them realize that what the psychologists (“omniscient totalitarians”–could he be thinking of Bettelheim, who only the year before had published the “Joey” article?) say is often not right or helpful, but simply gobbledygook.
Yet even in this seemingly changed frame of mind, the author of the article slips in the following:
“But there is one type of child to whom even Dr. Kanner cannot get close. All too often this child is the offspring of highly organized, professional parents, cold and rational–the type that Dr. Kanner describes as ‘just happening to defrost enough to produce a child.'”
Just so we are clear on who these children are, the author concludes:
“For this condition Dr. Kanner coined the term ‘infantile autism.'”
When you have an assault on American mothers by two Austrian psychologists, whose strange accents and stranger language is dripping with the (at that time) omniscient Gaura of the Germanic professor, you have all the makings of a cultural and parental crisis in the United States, especially for parents of children with autism. It took Bernard Rimland’s 1964 book to attack this thesis head-on. Let’s turn now to his book.”
(Yes, Bernard Rimland’s book…parents of children diagnosed with autism/childhood schizophrenia thought of Rimland, who had a son with autism, as a hero…until he went off the rails, years later, with his belief that Thimerosal was implicated in the onset of ASDs).
Replace ‘trigger’ with ‘factor’.
Trigger implies a particular way that the environment influences the development of autism, but as you say no-one knows (definitively) how the environment influences autism… you can’t give a particular mode of action: it has you speaking ahead of the research you say will take years to come.
(‘Trigger’ is a loaded word too.)
Gee Dr. Jay has provided us with information about the teratogenic effects of Valproic Acid….such a valuable contribution to our knowledge base and something we didn’t all know about…
I wonder if Dr. Jay has a chapter in his new book about the dangers for expectant mothers and their fetuses/newborns if the mother contracts a vaccine-preventable-disease which results in congenital rubella syndrome, congenital varicella syndrome, HPV and hepatitis B virus transmission and spontaneous miscarriages, preterm and SGA births if an expectant mother contracts seasonal influenza?
“Disagreements about the portion contributed by the genetics versus the epigenetic components are being studied at major academic centers. Clarity will take years but it will come.”
How many more years, and how many more studies, would Dr. Jay like us to waste our human and financial resources on, so that he and his anti-vaccine pals can continue to point their fingers at teh ebil vaccines as causing ASDS?
“A reason to seek out these triggers–and to diagnose autism early–is to decrease the numbers of families and children whose lives may be more difficult because of ASD. Obviously, these children and adults are not lesser people than those without ASD, but their lives are often harder and create financial hardship for families.”
How about an opinion from Dr. Jay about the hardships that developmentally disabled children and their families face…because we respect his “expertise” in the fields of genetics, immunology, virology, bacteriology, epidemiology and ASDs.
Financial hardship? How about using family resources for quack treatments such as chelation, castration, IV intrathecal stem cell treatments at filthy, unregulated offshore clinics…and expensive supplements, herbals and restrictive diets? How about the money that is donated to that odious disgraced former medical doctor Andy Wakefield?
“Respect for families whose children have these learning and behavioral differences should include educational opportunities, financial support from the insurance community and the government and more research to prevent and care for the more disruptive and emotionally painful aspects of autism.”
When have any of Dr. Jay’s groupies who have children who are developmentally disabled, ever lifted a finger to be proactive, to enact meaningful legislation and to procure a continuous funding stream…so that their children will have a secure future within society? They trash the work of other advocates such as Matt Carey, Todd W. and a host of other parent/advocates, who unselfishly give of their time to make that future a reality.
lilady @149 (quoting Bill Long):
“Thus, when Kanner turned to his study of children with autism in 1943, he was already inclined to think that mothers, especially, messed up children. Now, when he had children with autism before him, he reiterated his theory.
No, Long has the wrong end of the stick there. I’ve read Kanner’s 1943 report, and he’s unambiguous there about describing autism as an *innate* condition. He does comment on his patients’ parents as being analytical, unemotional, but I read that as an observation of a familial likeness, rather than a suggested causation.
How can a disorder that no one ever heard about just 25 years ago now be something babies are born with?
Uh, because until quite recently public policy was to institutionalise all sorts of disabled kids. The CP kids, the autistic kids, the depressed kids, all in institutions, tucked away from public view and dying young.
Poking around in older Pubmed indexed papers I found a couple of reviews that have a bit of historical perspective. Take note of the journal’s title.
First a 1981 review of literature (64 pages, I have only skimmed it):
And a 1986 review of autism and genetic disorders:
Dr. Jay, I agree with you that there is an environmental factors affecting the development of autism but we must look long and hard beyond valproic acid and vaccine because autism was defined by Kanner in 1943 and before that, the diagnostic was schizophrenia, childhood type (and since when that label was attributed?)
Valproic acid was introducted as valerates in pubmed during the year 1966. As for vaccines, no dates are published in pubmed.
Thanks for that: a stroll down memory lane for me.
@Grant: I agree, “factor” is a better word and I also agree that science has not yet figured out any real details of epigenetics’ involvement in autism.
@Alain: I am far from conversant with all of the history of autism diagnostic and agree that many factors must be involved antedating and then beyond valproic acid.
@Chris: One of the salient takeaways from reading those two articles (skimming the first as you did) makes me think about how far we have not come in autism research. There’s a lot of work to do.
Regarding the “25 years” mentioned a few times above, we are diagnosing autism better than before and have broadened the diagnosis over the years but my recollection of the late 1970s and 1980s is that autism was still considered quite rare in spite of increasing awareness. I think there are a lot more children with ASD and that the next few years will see elucidation of genetic factors and environmental factors.
May I recommend reading this paper:
Autism or autisms? Finding the lowest common denominator
And the Kanner 1943 paper which I am reading at the moment:
If you can’t get the former paper (autism or autisms), let me know and I’ll email it to you.
Actually, Dr. Gordon, I noticed things have become even more complicated. I say this a parent of an adult who was diagnosed as not being autistic in 1992 under DSM III, but would have been under DSM IV, but not DSM V. Fortunately his IEPs were written for his needs, not his diagnosis. The high school psychologist noted that he had an “official” autism diagnosis he would have been their autism program, and he would have lost services.
Now, where are those citations showing that measles has very low complications. Obviously you have some PubMed indexed research that is better than what the CDC uses.
I’ll email it to you. That is when I return to Sherbrooke. I had my doctor’s appointment yesterday and I’m still in Montreal.
Chris, reading the description of Kanner, I would have been diagnosed as autistic at that time if I compare my diagnostic papers from 1983-1984 with the case serie presented by Kanner but surprisingly, I didn’t get the diagnostic during these years and I’m left to figure out if the team who took care of me didn’t want to make the diagnostic or what.
@Alain: Thank you. I’ve got the second and will find the first. I
@Chris: I just had an interesting discussion with a pediatric developmental psychiatrist and about diagnoses, insurance reimbursements and IEPs. The system is broken. The measles statements(s) are comprised of my opinions and impressions and I will keep them to myself in the future because without citations to back them up they’re not worth anything.
You made a claim. When you make a claim you need to support it with actual evidence, not excuses. Especially since those kinds of “opinions and impressions” is precisely why there are almost a thousand cases of measles in Wales with over eighty needing hospital care.
I guess we will just assume that you are now aware that you made an error by claiming measles has a low complication rate, and are now willing to accept the 29% as noted in the review I posted titled “Clinical Significance of Measles” written by two CDC doctors and one from the Johns Hopkins Bloomberg School of Public Health.
“@Grant: I agree, “factor” is a better word and I also agree that science has not yet figured out any real details of epigenetics’ involvement in autism.”
It’s not just a better word, it’s that removing it removes a mechanism you introduced that isn’t established.
You’re also using epigenetics in too loose a sense, too, and should remove use of that word also. ‘Environmental factor’ and ‘epigenetic factor’ are not synonymous. There’s a long story behind this that I’ll spare everyone. It’s a bit of a meme in recent years for everything not genetic to be tacked with the term ‘epigenetic’ – it’s wrong-headed and a nuisance. (And annoying to me. Coyne has one explanation, but there are plenty articles over the past year rattling about the meaning of the term. It’s something I’ve meant to write about myself.)
I can’t help note you write “I am far from conversant with all of the history of autism diagnostic”, then later, in the same comment, write “we are diagnosing autism better than before”.
“I think there are a lot more children with ASD and that the next few years will see elucidation of genetic factors and environmental factors.”
It sound as if you’d be better to just say you don’t know a lot about it, really.
(My own vague familiarity is with the genetics studies, and that in a passing way. Bear in mind I’m saying that as someone who at least reads the abstracts of the papers [not the media reports] as they appear and has some background in the genetics analysis.)
Looking at the “Refrigerator Mother” hypothesis, it puzzles me that only comparatively recently we’ve been looking at genetics for autism. If the parents were “analytical, unemotional” to quote HDB, wouldn’t that be a pointer to them having autism, and that it had a genetic origin.
People have actually been looking at the genetics of autism for quite a while. The pointer to a strong genetic contribution has long roots, esp. in studies of twins.
An issue is trying to tease out the individual contributors to complex conditions like autism – it’s not easy! Early work using family studies, etc., weren’t very fruitful – not surprising as these best suit conditions strongly determined by just a few genes. (These were done some time ago.)
More recent work includes whole-genome surveys (GWAS* studies) looking at various types of genetic differences (copy number variation, methylation status of genes, etc). You couldn’t tackle these before whole genome surveys of these kinds were well-established and that’s only recently. They’re gotten more media attention, which is probably a key to people being aware of the work being done.
Genome-wide association study.
The pendulum has been swinging between biological determinism and cultural determinism for a long time now, with the same evidence appearing to support whatever filter you happen to be looking at it through. After the Nazis took biological determinism to its horrible conclusions the pendulum swung the other way and we had anthropologists like Margaret Mead proposing the tabula rasa idea of cultural determinism; that was around the same time the refrigerator mother theory was popular. I suspect that for some time after WW2 the suggestion that autism was inherited was unthinkable.
Ah, thanks Krebiozen. That makes a lot of sense.
Antivax propaganda claims another child:
@LW: those poor parents. Even though they made the bad decision, I feel so sorry for them. To have your child die…horrible. And even worse when the death could have been prevented.
Julian & Krebiozen,
Didn’t realise you were thinking of a longer time-scale. (What I wrote stands from the 60s onward, though, which is longer than 25 years ago for sure!)
@MI Dawn: agreed. I feel most sorry for the child, of course, and I really, really hate the sort of pediatricians who would lie to these parents and others by claiming that the pertussis vaccine is harmful in itself or that it is simply unnecessary.
I don’t generally comment here since the level of discourse frankly is well above this high school graduate. That being said though I can feel keenly the parents fears of autism being genetic. Logically I know there is nothing “wrong” with me, (besides the bipolar and ADHD, but I digress). I know it is not my “fault” I have a child with Down syndrome. I was 23 when she was born, pretty much at the lowest-risk age group, and already had a ‘normal’ child. Neither my ex husband nor I carried the translocation that caused her DS>. Still, though the guilt creeps up on me. Seeing things I DID pass on to my children hasn’t helped… the ADHD, anxiety, depression. My son is quite likely Asperger’s. There’s an ego blow you just aren’t supposed to talk about when it comes to heredity.
@ Spamamander: Many of us had “normal” children prior to the birth of a child with special needs. When you are expecting another child who is born healthy and who will meet developmental milestones, it is quite a life-changing event.
My child was born with a very rare syndrome; his chromosomal study was normal and it took two years for a pediatric neurologist/geneticist to nail down the exact syndrome he had. Just before my sons death in 2004, a number of the spontaneous gene mutations associated with that syndrome, were identified.
None of us knows when or where our lives will take another turn.
“Life is what happens to you while you’re busy making other plans”.
[…] Suck, tv 4:as Kalla fakta har tydligen låtit antivaccin rörelsen komma till tals (1, 2, 3, 4, 5). Jag har tidigare kritiserat antivaccinrörelsen så många gånger att det är onödigt att upprepa mig själv igen. Låt mig bara skriva att de är bigotta! Att inte erkänna att man föds autistisk, utan påstå att autistiska – som jag – är skadade, sjuka, m.m. är isig bigott. Lägg då till den hemska retoriken från rörelsen om att vaccin tar barn från sina föräldrar (jag har en gång själv fått en sådan kommentar på denna blogg). Som om autistiska inte skulle vara sina föräldrars barn. Det sistnämnda utvecklar den fantastiska Orca i följande blogginlägg, Sometimes antivaccinationists reveal more than they intend about why they blame vaccines for autism. […]
Lilady — I had kind of the opposite experience. My first child is the one on the spectrum. Thus, with our second, it was almost eerie seeing her hit milestones on time. Suddenly we realized that what we’d *thought* had been the first one hitting milestones really wasn’t. I don’t mean this to sound like sympathy grabbing; really our first is not badly affected, and she’s a joy. But it made me realize how difficult it is to gauge a child’s status by talking to parents, especially if it’s the first child, because the parents have no basis for comparison. Pediatricians and teachers, by contrast, have seen hundreds of kids, so they know what they mean when they ask “does she make eye contact?” We didn’t. Yeah, she gave us fleeting glances, and we thought that for her age, that was probably what the pediatrician meant. But even today she seldom holds eye contact during conversation. Our second, by contrast, has always been very good at fixing you with her eyes when she’s talking to you. (And boy can she talk! Our second will talk your ear off if you give her half a chance, and she’s got a gift at holding your attention, whether you want her to or not.) Every kid is different, of course, but it’s amazing how profound the lack of a basis for comparison really is, and how startling the difference in progression can be if you only have a couple of kids, even when the difference goes in the opposite direction.
Has God changed, or has our *perception* of God changed? I would argue that God was always a loving God, but we had a hard time recognizing it until Jesus came to sort out some of the confusion that had arisen. The Bible was written by human beings, and that’s a very important thing to keep in mind. It offends a lot of Christians to hear that, but it’s true. The people who told the stories and who later committed them to paper and the people who recopied then and collated them and translated them…..they all did the best they could. I firmly believe they all meant well. But they were human, same as you and me, and so their own preconceptions will have flavored the result. They wrote the stories in a way that made sense to them and conveyed important messages. Nowadays, far removed from the culture in which those stories were written, we have difficulty separating which bits were part of the cultural context and which bits are the real message. There is no easy way out of that, and I think each believer must find their own way through the text.
As you might guess, I am not a Biblical literalist. 😉 In fact, Biblical Fundamentalism strikes me as a bit idolatrous.
Well, I still think you underestimate the resistance to getting a diagnosis 30 years ago compared with the way it’s become almost fashionable today. That has to have an affect.
But that aside, I think there is an increase in diagnosis not because of more people seeking diagnosis nor more people’s gene expression being changed but because of something completely different. Something environmental, but not in the way you’ve been talking. I’m talking about the experiences children have these days compared to thirty years ago.
My girls are getting a very different experience growing up than I did. The world bombards a lot harder now. There is less time to learn the social graces before you must put them into practice, more stimulus to cope with, tighter schedules, less tolerance for anything that slows down processes, more standardized testing, more multitasking, more time spent in an online context (which, for the vast majority of folks, really didn’t even exist thirty years ago), more electronic games and instant gratification. None of these things are, in and of themselves, bad, and they have enabled progress in our broader community. But they make it harder for an autistic person to navigate childhood. They certainly make it harder for folks with ADHD. The result is that even if the same person with the same genetic and chemical influences were raised today versus thirty years ago, they may be more likely to get diagnosed today. After all, we must remember the old rule of thumb for diagnosing a mental or developmental disorder of any kind — it has to be disabling in some way. If it doesn’t cause you any problems, it doesn’t get diagnosed. Well, life’s more demanding now than it was, and that means a person who would’ve coped thirty years ago today maybe can’t cope as well. And voila, with no real change in their actual condition, suddenly they get a diagnosis.
This is not a junk diagnosis, in this case. It’s legitimate, since the child is legitimately suffering. But maybe with a different lifestyle, they wouldn’t be. Unfortunately, you can’t easily *give* them a different lifestyle, not if you want them to grow up and contribute to the society that we’re living in today. Life is what it is, and there’s only so much you can do to change that.
So I would expect to see an increase in cases even if nothing chemical or genetic had changed. Even if the kids haven’t changed, the world certainly has.
@ Callie # 176, and Lilady # 174:
I also have to wonder about the influence of culture-wide family sizes, too. If you grew up with several younger siblings/cousins/friends with younger siblings, etc, by the time you were raising your own, you would have a greater knowledge base to compare for what is “typical” even if you didn’t explicitly define it objectively. The cohort that is now raising young children (and I’m on the far elder edge of that group having had my last child, now 9, at the advanced age of 41) is far less likely to have the experience with many younger kids around for comparison. Daycare and school settings are pretty well stratified by age, as well. Older relatives (aunts, grandparents, etc) besides being farther away physically also may be less inclined to want to tender an observation about a kid that is not typical for any number of reasons social and otherwise.
I was just musing on the wider context Kanner’s work emerged from. The way biological and cultural determinism have gone in and out of fashion is an old interest of mine. I think we forget that eugenics was a popular idea before WW2, with people such as George Bernard Shaw and Marie Stopes supporting it. Many disabled people and others who were deemed undesirable (single mothers for example) were incarcerated in institutions and forcibly sterilized in both Europe and America.
The backlash against biological determinism after WW2 coincided with the beginnings of the British welfare state and of the civil rights movement in America (among other significant global changes), which I think reflect the change in attitudes towards the disabled, poor and the disadvantaged.
Since Kanner was writing during this period, I suspect the zeitgeist affected both his thinking and the way his work was interpreted.
I have to admit I haven’t been reading that sideline, hence why I didn’t pick up that you were after the longer timeframe (was left still thinking “25 years”!).
FWIW, one example of incorrect institutionalisation I’m aware of is for deaf people, whose poor communication skills and awkward voices led a number to being considered mentally disabled. (It’s one reason I’m cautious about the claim of a link between rubella and schizophrenia from older papers; I’ve never found time to see what more recent evidence shows, or not.)
Have any of you seen this post on AoA? Blaxsted and Conrick are still pursuing the (supposed) identity of Kanner’s patients.
There were a number of autistic children who were misdiagnosed, who were placed in psychiatric hospitals. There were a number of children who had physical disabilities and who were misclassified as mentally retarded, who were placed in large state-run institutions.
Here, read Malachy McCourt’s tribute to Bernard Carabello:
“My Hero: The Story of Bernard Carabello is Inspiring
by Malachy McCourt
There are people on earth who have not met Bernard Carabello and I pity them. The millions, if not billions, of people who have lived their lives and died and those who are now heading towards the grave, as we all are, and have never set eyes on this magnificent man, or been in his presence, must feel some loss in their lives.
He spent twenty years of his life at Willowbrook State School, being treated as if he couldn’t understand life, love and human affection. He was abused in many ways, and punished for infractions of stupid rules, but he never lost his sense of hope that one day it would all change. And change it did.
He doesn’t walk too well, he needs help with his food and sometimes his words are not too clear, but there is no nobler man walking this earth. His message and his passion are clear- there is no rest for him and he will not let us rest as long as there is one suffering disabled citizen left in any institution here or anywhere else.”
Bernard Carabello is considered to be “The Father of the Self-Advocacy Movement.” He is a compelling key-note speaker and consultant who challenges us all to build new options so that no person has to experience the devastating consequences of living in a Willowbrook type environment.”
I had the privilege of meeting Malachy and Bernard. They are true advocates who are an inspiration to all of us.
Yes, Jebus clarified slavery and adhering to the teachings of the Old Testament. So by all means, sell your daughters into sex slavery. If the guy who buys her doesn’t treat her as nice as the next woman he marries, she goes free. Ethics par excellance.
Then there’s the whole issue of Jebus and the evidence for him being is post facto and women being, at best, chattel.
My parents were religious until WW2 beat it outta them – Gott mit uns, mein freund.
So, they had no problem with me going to church and reading the BuyBull.
I found it strange the Goddists only wanted me to read certain parts and read the whole thing anyway somewhere between the age of 10-12.
The perfect age, according to St Augustine, as the Plan 9 From Outer Space of literature is written as a parent to a child.
Putting it down upon completion, I was gobsmacked that adults take it seriously, for whatever obscure messages it might have. I never went back.
Learning the history of Europe affirmed that decision as Jebus = God until the Halloween 1517 pronouncement of a now famous Zionist, IIRC.
Krebozien: The backlash against biological determinism after WW2 coincided with the beginnings of the British welfare state and of the civil rights movement in America (among other significant global changes), which I think reflect the change in attitudes towards the disabled, poor and the disadvantaged.
Funny you should mention that, since the predominant attitude today toward the disabled, poor and disadvantaged seems to be right back where it was before World War 2. No one would openly admit to *wanting* a disabled person dead or to hating the poor, but..they do, and they introduce policies that will help them indirectly kill undesirables. See the dismantling of Social security in the US and the destruction of the NHS in England.
Al kimeea: Yeah, I have a real problem with the concept of a “loving” God. First of all, love is one of those emotions I refuse to truck with; a strong person doesn’t need soft emotions like that. Secondly, it’s clear that God’s “love” comes with a lot of restrictions and caveats. “He’ loves fetuses more than women. In my state, the perennial marriage question has come up again, and it’s hardly been three months since a convicted rapist killed his wife and dismembered her, along with several other incidences of terminal domestic violence. God has no problem with a rapist getting married, but will move heaven and earth to make sure gay men and lesbian women who have consensual relationships don’t get married? Yeah, some love.
@ al kimeaa: I think you are misinterpreting Calli Arcale’s post.
Calli presented her personal Christian beliefs and that she doesn’t think of the bible as being infallible (“As you might guess, I am not a Biblical literalist. 😉 In fact, Biblical Fundamentalism strikes me as a bit idolatrous.”)
Perhaps Calli should have linked to this site and the ongoing debate about who actually wrote the New Testament:
What makes you think that your interpretation of certain sections of the bible that you read as a preteen, is more valid than Calli’s…or anyone else who professes a Christian faith?
“Learning the history of Europe affirmed that decision as Jebus = God until the Halloween 1517 pronouncement of a now famous Zionist, IIRC.”
Are you referring to Luther who nailed his 95 Theses to a castle church door, challenging the Catholic Church and the sale of “indulgences” (paying for a place in heaven), on All Hollows Eve?
That “now famous Zionest” is definitely a hoax…and it referred to Martin Luther King Jr. not the Protestant reformer.
Yes, that *would* be why she didn’t want to talk about religion here…
I see that the Ethan Allen was for naught. I shall thus resort to Tennessee Williams as channeled by John Huston and Richard Burton.
Half of the camel is within the tent, and half is without. Where’s the camel?
funny how it is OK to blather on aboot Jebuswoo, as long as you’re not critical of the myth
Martin Luther was a rabid hater of Jews whose teachings along these lines were referenced by a certain Mr. Hilter, IIRC.
I’m well aware of Calli’s interpretation, I have a friend with the same one.
When presented with a particular example of doG’s love from Deut 28, my friend told me to read the whole chapter as it is all about what would happen to you if you happen to become destitute. Going back and reading it again it, of course, says nothing of the kind.
That interpretation of theirs is a device to make it easier to rationalize a loving doG, despite all the evidence to the contrary…
On the threshold
I hope never to become so strong…
@ al kimeaa: So…what is your point? Calli has already stated that she does not accept the bible as infallible, because it was written by fallible humans.
I and other posters here have declared ourselves as Christians, and skeptics and as science-based in our “beliefs”.
Nonsense. Having people disagree with you is not the same thing as being prevented from having your say. However, your say is fairly incoherent, and it is peculiar that you use the Bible to argue against my views when you reject it and I’ve already said I don’t take it literally; in other words, you’re arguing against my religious viewpoint with something neither of us would consider valid, which is rather peculiar strategy.
You say there is evidence to the contrary that there is a loving deity. Don’t bother using the Bible to convince me of that; remember, neither of us thinks it should be taken literally. Therefore, you must only be finding that evidence in the real world. Are you arguing that the presence of evil is evidence against a loving god? That would make more sense than using the Old Testament to argue against a loving god in a context where none of us are taking the Bible literally anyway.
(And lilady is right that you completely misrepresented my point about Jesus coming and sorting out our misunderstanding. I don’t think you misunderstood me, though. I think the misrepresentation was for rhetorical purposes, which is why I’m not dignifying it with a response as if it were an actual argument. If I’m wrong, feel free to correct me.)
Personally, I think it’s clear that the restrictions and caveats aren’t coming from God but from human beings, who are arrogant enough to think they get to decide who God gets to love. As a Christian, I think that other Christians who fight gay marriage, reproductive freedom (which is a much bigger thing than just the abortion fight; there’s some really creepy stuff going on in those religious crisis pregnancy centers), women’s rights, and so forth are just about the worst thing happening to Christianity in the modern era. There *is* a war against Christianity, but it’s not being conducted by atheists or Muslims or whatever. It’s being conducted by Christians against Christians.
There’s a really good book I highly recommend, by noted atheist fantasy writer Terry Pratchett. It’s called “Small Gods” and it discusses what happens when faith in a deity is replaced by faith in (or at least fear of) a religious institution. It’s pretty good. Also very witty, because of course it’s a Discworld book.
Oh PGP, this explains so much about you. All I have to say is, your loss.
I’m always reluctant to get drawn into religious debates but I feel compelled to note in the interests of fairness that you continually cite extreme examples of politicized Christianity as though they represent all Christians. The actions of those people have far more to do with right-wing political ideology than with religious belief.
And you don’t need to lecture me about the excesses of the pro-life movement either, I went to Catholic schools while the ball was really getting rolling on anti-abortion activism, which I never bought into. But again, I have to note that several of my teachers were activists on progressive issues as well. I learned a lot from them about poverty, social justice and human rights abuses in Central and South America.
And just for the record, I don’t practice the religion I was raised in anymore and am not particularly invested in the question of whether there’s a God or not, but I don’t feel the need to proselytize my lack of beliefs to other people either. It’s obnoxious either way. I’ve become quite drawn to the teachings of Zen Buddhism in the later part of my life and have had some secularized training in mindfulness meditation, but I don’t call myself a Buddhist because I don’t do a formal practice or have a teacher. I would say the best thing it’s done has been to relieve me of the burden of seeing everything through the prism of my own ego and experiences. Even a rudimentary acquaintance with Buddhist teaching on mindfulness and compassion can take you a long way.
I *personally* look on religious writings as entirely human productions- like literature- that reflect and represent human nature in all of its variety as emotionally charged themes and images. The “supernatural” usually is concerned with emotion, instinct, myth – the “dreamtime” as it were.
People will pick and choose ( not consciously) whatever aspects they value- including horrible things like racism, sexism, ethnocentrism, war, slavery- and admirable things like assisting others, rejecting egoism, seeing outsiders as valuable, being fair with others- to focus on: it’s like a Rorschach or TAT.
It probably would be easier if people just chose their values and they behaved appropriately but the other-worldly aspect and hyper-emotionalism imbues the works with numenosity and charges them, which can motivate them.
The realm of the numenous is neither logic based nor entirely tamed by what we would hope rules interpersonal conduct and societal law.
To bring us a bit back on topic, there is a trend of Christian families, particularly born-again families, seeking to adopt special needs children. On the face of it, this seems like a good thing; surely that’s better than institutionalization. But the reality is that too many of the religious agencies overseeing these adoptions are in it for the heavenly brownie points and not for the well-being of the children — and in some cases, that’s also true of the adoptive parents. While there are really awesome adoptive parents and excellent services to make sure the right parents are paired with the kids and then supported, there is a trend right now where all of that caution is ignored on the assumption that God will make it work out if it’s meant to be. And I do worry what this will do. Adopting a disabled child out of a pious pity without fully appreciating the effort it will take, because one is just assuming God will make it all happen…. This sort of thing underlay a lot of the horrors of clinics in Evergreen, Colorado which specialized in “attachment therapy” in which children (often autistic, adopted, or both) were presumed to have an attachment disorder underlying their reported misbehavior. The most infamous example of this is “rebirthing”, in which the patient is wrapped tightly in towels and sat upon, with the expectation that the patient will force his/her way out and be “reborn”. They presume a birth trauma is required in order to form a proper attachment to a parent. There was at least one death as a direct result of this method. It’s partly an outgrowth of “spare the rod spoil the child” mentality and partly the powerful imagery of being born again, both of which are popular in the more fundamentalist congregations. Oh, and also the Biblical image of Jesus casting the demons out of a girl can feed into the popularity of these extreme “treatments” for autism and other childhood psychological disorders.
It is shocking sometimes how far some parents will go to “recover” the child. And yes, sometimes religion plays an especially pernicious part in that.
@Calli Arcale: Would you mind emailing me?
Sure. Where can I find your e-mail address?
BTW, part of my posts above is informed by having just read a rather unsettling book about the dark underbelly of adoption. We desperately need the system reformed in the US. Too many adoption agencies prey upon adoptive parents, children, and birth parents, and there is a startling amount of money involved. Learning about the religious connection was downright creepy. It was a good read, though, and closed on a very hopeful note. “The Child Catchers: Rescue, Trafficking, and the New Gospel of Adoption”, by Kathryn Joyce. She only briefly touched on the stuff that was going on in Evergreen, Colorado; she was more exploring the religious element that was driving woefully unprepared people to adopt children whose circumstances were sometimes seriously misrepresented by the adoption agencies, and who often had needs the adoptive parents couldn’t handle. (Children of war, for instance, who had PTSD, or who had been institutionalized for a long time and never developed normal social skills.)
Never mind, just dawned on me I could go to your website.
Official joke from the Boo Hoo Bible: “Oo oo the Guru.” I tend to think that some of these Zen types are a bit, ah, attached to sesshin, trinkets, and so forth. (I believe I’ve mentioned before that I know a fellow whose rigorous 108-prostrations routine led to knee surgery.)
@PGP: as an atheist, all I can say is, your comment about love made me very sad for you.
I respect my friends who have religious beliefs. I don’t have to hold them. But I still believe in love, charity, kindness, honesty, all sorts of virtues. Religious or not, they make us human.
@Calli: yeah, people, religious or not, do all sorts of things to “recover” their “lost” child, not seeing the person infront of them. That’s pretty sad, too.
this wee exchange has been a perfect example of the synonymity of religion and woo.
I’m not the one claiming God exists or which parts of the Christian Holy Book are literal/metaphorical/alleghorical, and have provided some evidence to bolster my response. There is plenty more without the supernatural (which given the idea of deities, is really unavoidable, or aliens) or quoting a book you don’t take literally and may not even have bothered reading.
The symbol of The Loving Christian God being an instrument of torture is quite apt, given His history is drenched in blood to this day. While He makes watches I guess.
No different than MarJudith of yore.
The numinous world is no less harmful than the woominous, actually more so. AFAIK, homeopathy has never disassembled anyone or threatened eternal damnation, a concept introduced by Buddy Jesus BTW.
There ‘s an argument the religious nutters wouldn’t have a chance if it weren’t for the cachet, the legitimacy provided by nice people of faith…
@ al kimeea:
Exactly. It is powerful magic because it is infused with emotions provoked by eternal forces of life and death, good and evil: not anything to mess with arbitrarily.
Logic, self-reflection and awareness of our past ( psychologically as well as historically) enable us to go beyond what our emotions tell us is real.
The old faerie tales tell the hero/ine to “Trust no one but yourself” however, in reality that’s often the least reliable place: reality -via observation, study, consensus and review- is a product of many individuals continuously fact checking each other over decades.
Hey, I’m only reporting on observed behavior. […] Or read the news coming out of North Dakota or Missisippi. My area is fairly sedate, but that’s just the culture around here.
You’re arguing that correlation = causation, to conclude that religious belief is responsible for some people turning into authoritarian hypocritical scumbags… but where are the control groups? Where are the prospective studies, or the dose / response analysis?
I am happy with the null hypothesis : some people are just hypocritical authoritarian scumbags by nature, and when religious belief is the socially-acceptable channel for expressing their nature, then oh yes, they will be pious.
And conversely, some people are helpful, generous, and altrustic, and if religious belief is socially approved as the avenue for that, then they will also be religious.
To argue that religion is to blame for the existence of authoritarian sh1t-weasels who wield their Holy Book as the bludgeon to ruin other people’s lives is to succumb to all manner of confirmation errors and selection biasses and attribution errors, errors which you wouldn’t accept in a discussion of science-based medicine. It’s as silly as crediting religion for the existence of helpful, generous, altrustic believers. That is the path to tedious True Scotsman arguments.
Perhaps your anger is better directed at the power structures of Organised Religions that embrace political power. I’m pre-disposed to dislike *any* kind of organised human activity so I’ll go along with that.
@ MI Dawn:
I feel similarly about PGP.
But sometimes being hurt causes people to put up guards.
I sometimes wonder if you might be happier if you lived somewhere in which you could be amongst more like-minded people?
While I agree that there are many awful people out there- not just religious or not- but along many other variables- there are a few decent ones.
I think that you might wish to someday leave the provinces behind you or become more acquainted with others who see the same world that you do. Also you can’t expect others’ views to line up with your own exactly: you might need to agree to disagree on some issues despite solidarity on others.
Still, you’re young and everything need not be written in stone for all eternity.
EP: you continually cite extreme examples of politicized Christianity as though they represent all Christians.
Well, when was the last time you ran into a left-wing Christian? I can cite maybe one priest in my area who actually went against the party line- he lost his whole flock over that. There are a handful of Lutheran and Protestant churches that say they are ‘GLBT friendly” but I’ve never heard of them doing anything political.
Calli Arcale: It is shocking sometimes how far some parents will go to “recover” the child. And yes, sometimes religion plays an especially pernicious part in that.
To go back on topic, I think that ties into the perfect parent movement. Since parenthood and families in general are very politicized these days, having offspring that are odd or not keeping pace with their peers is believed to reflect on the parents. It’s not only that parenthood is a choice, it’s a choice that has to be justified, at least in the US.
Eternal forces? Good and evil? To be messed with? No offense, but that is inherently irrational anthropomorphism. It reeks of “everything happens for a reason”.
This morning, actually. But that is beside the point.
There’s a growing crop of Christians that take the sermon on the mount and throw out pretty much everything else. That makes them good people, but it also makes them pretty much Christians-because-it-makes-us-comfy. There’s “not taking the Bible literally”, and then there’s “pretending 95% of the Bible does not exist because it makes me look like a troglodyte”. Even the modern wishy-washy “Jesus was a socialist and let’s pretend the OT does not exist” crowd ignore half of what that nice, nice man said. And even the nicest, kumbaya-singing Unitarian socialist still provides cover for inherently irrational thought, justification for discrimination and still extends an umbrella over the worst of the worst. This No True Christian crap needs to stop, because every faction uses it to distance itself from the 40,000+ other ones yet STILL sanctions irrationality in general.
Luke 19:27 alone ought to put all of that touchy-feely cafeteria Christianity to rest.
I should have perhaps clarified: I refer to what is g*d-like( numinous) to people over the ages, be it to their benefit ( “good”) or detriment (“evil”), all viewed from their own perspective- not anything independent of people but as a *psychological reality* only.
The forces of nature-storms, floods, sunlight, warmth- or something as abstract as ‘good fortune’ can be related to as personages not because they exist as such but they incite emotional reactions ‘as if”..
Well, when was the last time you ran into a left-wing Christian?
This weekend. A whole flock of ’em. When is it going to dawn on you that your personal experience doesn’t define entire demographics?
@Denice: fair enough, but be careful — words have meaning!
Anyway, what I was trying to get at that it is all well and good trying to educate people on the benefits of vaccines, science-based medicine, evidence-based medicine and the likes… but in the US, right now, more than 1 out of 3 people you try to explain these things to believes Jesus will come back to earth in their lifetime, start the rapture and lift them up to heaven. More than 3 out of 4 people you try to explain the benefits of rationality to believes in the literal existence of angels. I don’t necessarily think that the two can be separated.
“Well, when was the last time you ran into a left-wing Christian?”
(Raises her hand)
Apologies, that should be 1 out of 5 on the “Jeebus coming back in your lifetime”. It’s petrifying enough without exaggeration.
Okay, lilady, you are well-researched, well-respected (rightfully so, and including yours truly), so help me out here. How do you square fighting for an evidence-based perspective on medicine with a non-evidence-based perspective on life?
I live within spitting distance of five seminaries and a major divinity school (which I briefly considered), and I routinely shoot the breeze with my neightbor who is an Evangelical pastor. A trickier question might be the last time I actually ran into a Christian who wasn’t “left wing.”
Overgeneralizations are just overgeneralizations.
That’s a fair question Stu.
Perhaps it is my professed *faith* is a product of my upbringing. My mother was a Roman Catholic and my father was a Lutheran-Missouri Synod (very dogmatic brand of Lutheranism). My mother, who was a registered nurse, taught her three children to be open-minded about all religious beliefs/non-beliefs. (Perhaps more Humanism than dogma-based).
My formative years were spent in Brooklyn, New York in a very *mixed* working class neighborhood, where I had friends of all religious faiths and I am old enough to remember the older relatives of my Jewish friends, who survived the Nazi concentration camps.
As I matured and married the love of my life 46 years ago, who was raised as a Roman Catholic and who attended a Catholic university for undergrad and graduate degrees, my exposure to other faiths increased. Both of my children were baptized as Lutherans, and my daughter was educated in both religions. (Our choice) was to send my daughter to an all girls private Roman Catholic high school, because it was the *best-educational-fit* for her; I’m not super liberal when it comes to education. She was mighty p!ssed-off, because she couldn’t roll-over on the nuns and teachers at that highly-competitive school.
When my son died in 2004, we celebrated his life at a memorial mass in the local Catholic church…I’m surely going straight to hell for that.
I have close friends who have a variety of religious faiths (Christian, Jewish, Hindu, Sikh, Muslim)…and who are agnostics or atheists. Their faiths or non-faiths are of little concern to me, because I admire their goodness and I rely on them for their loving support and their open-mindness.
1 Corinthians 13
King James Version
“And now abideth faith, hope, charity, these three; but the greatest of these is charity.”
@lilady: precisely. Though I like the modern versions that replace “charity” with “love”.
I look at my children, and I honestly suspect that my daughter, and my niece, could have been diagnosed with PDD. They had some of the symptoms, but not *all*, and, as girls, were better able to fit into things (quiet, shy, polite girls fit the mold very well). They had clothing issues, noise issues, some interpersonal issues (even now, my daughter hates to talk on the phone or any other way than in person unless it’s unavoidable). No matter. They were loved and accepted for their quirks, and no one tried to fit them into molds.
lilady: I appreciate the background.
I also noticed you did not in any way shape or form answer my question.
Sure. [METAPHOR ALERT]
I imagine it as such:
our modern day thought and language, rational and scientific, is an edifice built upon a burial mound- a cairn- of our past history on the planet- emotions, images, visions, dreams, myths and legends- not inherited ideas but nearly universal reactions to highly emotional situations people encounter.
If the “edifice” is strengthened by continuoUs activity and “building”, you can barely notice the mound it’s built upon but, if there is only a small accumulation of structure, the burial mound is what is outstanding.
Also, I apologize for belaboring the point here, but for every
1 Corinthians 13: “And now abideth faith, hope, charity, these three; but the greatest of these is charity.”
I show you a
Luke 19:27 [KJV, to align with yours]: “But those mine enemies, which would not that I should reign over them, bring hither, and slay them before me.”
But hey, let’s stay in context, and grab some more 1 Corinthians. How about, oh, 6:9:
“Know ye not that the unrighteous shall not inherit the kingdom of God? Be not deceived: neither fornicators, nor idolaters, nor adulterers, nor effeminate, nor abusers of themselves with mankind,”
Oh, hey, another fave of mine, 6:12
“All things are lawful unto me, but all things are not expedient: all things are lawful for me, but I will not be brought under the power of any.” (What the, I don’t even…)
Good thing this is the book where God gives us hair advice (11:14-15)
“Doth not even nature itself teach you, that, if a man have long hair, it is a shame unto him?
But if a woman have long hair, it is a glory to her: for her hair is given her for a covering.”
Did you know your long hair exists solely to cover you, lilady?
Also: friendly advice… do not quote the Christian Bible at me to prove it is a sane, caring or humane document — it is not, and you know damned well it isn’t.
@Denice: that is a beautiful metaphor. It is also exceedingly vague and consists mostly of hand-waving. You would laugh anyone arguing in this fashion about vaccines out of the room. Why do you feel it is acceptable here?
Actually, I am truly incensed at the moment. Forget not belaboring the point. And I will stick just to that sweet 1 Corinthians. (Something in the back of my head went “1 Corinthians? Wait, THAT 1 Corinthians? She can NOT, possibly be serious…”)
Doop dee doop dee doop…
2:2 For I determined not to know any thing among you, save Jesus Christ, and him crucified. (Calli, Denice, lilady, you are all sinners already)
11:3 But I would have you know, that the head of every man is Christ; and the head of the woman is the man; and the head of Christ is God.
11:5 But every woman that prayeth or prophesieth with her head uncovered dishonoureth her head: for that is even all one as if she were shaven.
11:6 For if the woman be not covered, let her also be shorn: but if it be a shame for a woman to be shorn or shaven, let her be covered.
11:7 For a man indeed ought not to cover his head, forasmuch as he is the image and glory of God: but the woman is the glory of the man.
11:8 For the man is not of the woman: but the woman of the man.
11:9 Neither was the man created for the woman; but the woman for the man.
7:9 But if they cannot contain, let them marry: for it is better to marry than to burn. (What the…)
16:22 If any man love not the Lord Jesus Christ, let him be Anathema Maranatha.
lilady, I apologize, but you might want to pick something other than the most misogynistic book in the NT (among stiff competition) next time.
Yes, I can and will do this all day.
Sorry Stu, that I wasn’t able to answer your questions. I think I was attempting to state that my faith…or lack thereof…has absolutely nothing to do with my inborn (or acquired) skepticism and my science-based education and nursing practice.
“How do you square fighting for an evidence-based perspective on medicine with a non-evidence-based perspective on life?”
I *manage* Stu, and it is not a problem for me. I’m not at all concerned that my non-evidenced-based perspective on life (faith), has in any way negatively impacted on the care and concern I have for the patients who were entrusted to my care.
Because we’re not talking about science- ( e.g. vaccines, research,-where there is data) but speculative ventures about how humanity developed that function like poetry- giving us insight perhaps but never proof.
Psychologists like Piaget theorised- based on their direct observations of children- that kids build up a naive physics through their interactions with objects in the world- dropping objects over and over again- experimenting with motions and objects in space- before they ever study science- and finding ways to
explain” what happens.
Bruner et al write about how kids slowly “discover” and create language -based ideas about people and social structure.
Others study cultural differences in cognition.
Others look at ancient mythologies, literature, religion and art work: a link to our predecessors – sometimes sounding alien to our ears, sometimes not.
But in reality, no one really knows how pre-scientific humans’ minds work- we can only speculate and guess.
However, how we are NOW is not what we were. Read literature from earlier cultures.
-btw- I’m an atheist. Sin is not a concept I use in daily life.
You *manage*? I’m sorry, that does not address the inherent, raging, glaring contradiction. I’m sure you *manage*. But as you sit there holding forth at the irrationality of anti-vaxxers viewpoints as being (har-har) silly, and (har-har) irrational and (har-har) not based on evidence, how on Earth do square that with being a Christian? It’s silly, it’s irrational, and it is not based on evidence.
And I am sorry, as much as I love you, it makes you a glaring hypocrite.
Then it makes me a hypocrite too, Stu, and an awful lot of engineers, scientists, medical professionals and researchers.
We’ll live with it.
While I really don’t want to go on and on, study of children’s ideas can be enlightening and disturbing: they sometimes show a lack of realism that seems other worldly and primitive.
KIds sometimes believe that an object can transform into another or disappear, that the dead can be re-born, that animals can transmute into others.. I’m not talking about anthropologists speaking to less industrialised, illiterate cultures or symptomology of mental illness but 20th century westerners.
Kids gradually acquire the basic explanations of their own culture whether it is mystery-based or science-based.
So is the assumption of the existence of plural minds.
It’s silly, it’s irrational, and it is not based on evidence.
So is most of shared cultural existence, such as my preference for particular artists and composers.
Perhaps you can point to the biblical passages that deal with evidenced-based/science-based medicine, such as vaccines, birth control (the sin of Onan-“spilling the seed”), and marriage for gay couples…and then compare them to my posts, Stu…to see how “hypocritical” I am?
The direction this thread has taken illustrates a growing concern I have with certain elements of the sceptic movement: the all-or-nothing approach. If you aren’t an atheist, you can’t be a sceptic, you can’t be in favour of science, cos IT JUST AIN’T LOGICAL.
As HDB pointed out, much of humanity isn’t logical. Getting all shrill and upset because lilady and others have DARED to profess a strong Christian faith is as ridiculous as dismissing their views because, say, they prefer Marvel comics over DC comics, or they don’t like Star Trek.
For people of strong faith, that faith is as much a part of their makeup as their eye colour or their like/dislike of certain music, and asking where it comes from is as pointless as asking why they have blue eyes or like rap music.
Folks? Think we could try to get this thread back on-topic?
I think he’s saying it’s hypocritical to be religious and also scientific, not that it’s hypocritical to have a different interpretation of Christianity given that all interpretations of Christianity are inevitably irrational on some level. (Stu, please correct me if I’ve misunderstood. It’s been a long evening….)
The thing is, life isn’t neat and tidy and nobody has enough information to get through life in a purely scientific and rational way. You have to accept certain assumptions as valid in order to get through life in anything like an efficient manner, rather than exhaustively determining what is correct at all times. Sometimes we call these assumptions religion, sometimes we call them faith, sometimes we call them opinions, sometimes we call them passions, sometimes we call them preferences, but quite a lot of the time we don’t call them anything because we don’t even realize we’re making assumptions. Unscientific? Yes, because although science too can get away with making assumptions, it has to painstakingly point this out and account for the errors that can result. In daily life, we’d probably starve to death if we were that rigorous about everything. And so we make assumptions, we build up prejudices and biases, and this gets us through life much more expediently. Say what you will about a cognitive bias; it does make it easier to decide what to have for dinner. Everyone does it. It’s fundamental to the way the brain works. You may not believe in a deity, but I can guarantee you that you believe in other things. Even atheists generally believe in stuff that has no physical existence — stuff like justice. It can be very much a force for good, because as Terry Pratchett had Death put it in “Hogfather”, if you don’t believe in them, how can they become?
There’s lots of science behind these biases being inbuilt, in much the same way that all our weird visual quirks are inbuilt to enable us to process phenomenal amounts of visual data and produce such a simple, easy-to understand result in our minds. The brain uses shortcuts, and belief is one of them. Not precisely in a “god of the gaps” sense, but in an efficiency sense — you cannot expect to always have all information available to make a decision, after all, so it’s not so much filing a knowledge gap as filling an indecision gap. So religious people who are skeptics are not hypocrites necessarily. They’re humans. The key is that in order to legitimately call themselves skeptics, they must be aware of the limitations of their belief, and that the may be wrong. Being open-minded doesn’t mean rejecting the supernatural. It’s far more general than that. It means always accepting that one might be wrong about something.
As far as liberal Christians, I recently started donating to a group called Reconciling Works, which seeks to promote LGBT acceptance in local churches. And I belong to the ELCA, which is a relatively liberal version of Lutheranism (though the denomination is very forgiving of individual congregations choosing a slightly different path on doctrinal issues like whether or not to accept a gay pastor, basically on the basis that officially it’s fine but they’re not gonna force a congregation to take a pastor they don’t want).
Christine: If you aren’t an atheist, you can’t be a sceptic, you can’t be in favour of science, cos IT JUST AIN’T LOGICAL.
First of all, there is a huge, giant rift between science and religion right now. I suppose there always has been, we just notice the rift more now than in times where everyone had to pay lip service to God and attend church or the local synagogue. And Christianity and science have always had a rocky relationship. It wasn’t until after the bubonic plague and the witchhunts that anything resembling science or modernity emerged in Europe.
I mean, look at Asia; they rarely had fundamentalist movements and Japan and China have almost always experienced steady progress in most scientific fields.(There were some fundamentalist movements; see Japanese Nationalism from the 1920s-1945, and Maoism.)
America, by contrast, has a robust fundamentalist movement and is stagnating in scientific fields.
Also, Christine, I gotta tell you that I am not in favor of emotions, except perhaps for special occasions where they can be safely detonated. I’m not sure I believe in justice, unless I can personally administer it. It’s a commodity for the rich and powerful, not for people like me.
I didn’t really want to talk about religion here.
I’d rather talk about medicine.
Christians can’t be in favor of science? That seems to be a false dichotomy.
I’d rather see us talk about something more productive, like working on ways to explain to ordinary people that vaccines don’t cause autism, and that though they do have some risks, the risks are generally not as bad as the risks of the diseases they prevent.
Perhaps people need to be reminded what polio was like, or what pertussis sounds like, more often. Rotary International, I want to say, was doing a big push to eradicate polio.
Question: Does anyone see any difference between antivaxxers’ treatment of oral vaccines versus injected vaccines?
@ Pgp: Excuse me. I’ve earned my stripes as a skeptic and a defender of science-based/evidence based medicine…while maintaining my faith as a Christian.
You have a history of blundering on to threads to attack other posters, based on your *ability* to use broad strokes and sweeping generalities, about their gender and their religious beliefs.
Give it a rest Pgp, your explosive venting and your anger about your plight in life, is tiresome.
Just gonna leave that here.
Lilady, I usually stay on topic. But if people are going to pretend science and religion have *anything* to do with one another, I’m not going to let that slide. They belong in different compartments, on different processing systems. Some people can run the science PC and shove it into the closet come Sunday, others run the religion MAC all the time. The problem is a lot of people get the OS’s confused, or try and run both at the same time. Which will lead to a crash, a confused reboot and errors.
Khani: It wasn’t me who made the rules.
As far as I can tell, anti-vaxxers hate both, especially the polio vax, since it came on a sugar cube. A lot of the AOA people act like giving a kid sugar is equivalent to feeding them cyanide. They really hate sweets.
Btw, today they’re yelping about the diptheria vax of the 1930s, and how gardening will make your kids, grandkids and all your descendants autistic.
Do not piss off the Unitarians – they might come to your house in the middle of the night and burn a question mark on you lawn.
@ Khani: I’d like to talk about medicine, as well.
From what I can discern when I go slumming at my *favorite* anti-vaccine blogs, the *emphasis* is on vaccines that are injected, not the rotavirus vaccine, which is the only oral vaccine that is on the Recommended Vaccine Schedule.
I have a folder of great pro vaccine websites, that I link to when I post at other science blogs. When I post I provide statistics comparing the exceedingly rare serious adverse events associated with a vaccine-versus-the serious consequences of not vaccinating. I also have the legal documents for each of the Vaccine Court’s decisions, where a child was awarded damages for encephalitis/encephalopathy…not autism, that I link to.
Since I retired from public health, I really miss have personal contact with parents who had questions about vaccine safety.
Matt Carey has three posts up about Dr. Michael Fitzpatrick, who has an autistic child and who is a science blogger in the U.K. Dr. Fitzpatrick, has offered to participate in a debate with Andrew Wakefield about vaccine safety. Andy has been moving the goalposts again…his latest shtick is about the frequency of anaphylaxis and the inadequacy of protocols/medical staff to treat vaccine anaphylaxis…based on three dodgy case studies.
[…] go onto antivaxx websites. I have enough problems with my temper as is. However, a post by Orac caught my eye so I went over to Age of Autism. I don’t know how to use NOFOLLOW, so if you […]
TINW. TIN(TINW). TIN(TIN(TINW)).
–The Lumber Cartel.
@Politicalguineapig: all generalisations are dangerous, including this one. And it’s not true that all autistic children are atheists. I wasn’t.
Looking at the AoA comment thread, I came across this:
Words fail me.
#241 I have been in the room with friends (and their adorable baby) while someone else told them how great homeopathic teething remedies were.
They listened politely (I don’t think they were susceptible, frankly, but we Midwesterners will smile and listen to almost anything just out of politeness) and after the kind and well-meaning woo-ster left, I pointed out the belladonna issue. ( https://www.respectfulinsolence.com/2010/10/28/a-brief-diluted-homeopathic-interlude/ if you don’t remember.)
And their baby still gets tylenol for sore teeth, as recommended by their pediatrician. Not belladonna.
Also info about it here. Gotta be careful with homeopathy, especially with children and especially in the U.S., where just slapping “homeopathy” on the label can circumvent a lot of those nasty safety and purity regulations.
Thanks for explaining the issues to your friends!
Khani: I agree completely about needing to know what pertussis sounds like.
The health department I work for in Australia has developed a nifty little smartphone app that gives people reminders as t when their vaccinations are due (and kids’ vaccinations too). It’s being advertised on TV with a nice, soothing jingle.
I do wish it could be accompanied by some of the other ads I’ve seen over the years – the newborn with pertussis fighting for breath; and one I remember from my own childhood of a boy who’d developed encephalitis from measles and was left a vegetable. I still remember that ad from 30 years ago, and it made me a big believer in vaccinations even as a kid.
What we refer to as ‘SB’ as a mode of thinking is probably a rarity amongst humans:
why do I say that?
it is a late achievement in development- Piaget would label it as part of formal operational thought- including hypothetical thinking, abstract throught (“operations on operations”), knowledge of combinational possibilities et al.
It runs along with executive function development- including such capacities as self-evaluation ( anti- Dunning-Kruger, so to speak). It can be restricted because of psychological or developmental problems.
Generally, this doesn’t appear in children prior to adolescence ( which is why algebra and research design usually aren’t taught much earlier as a matter of course), it doesn’t appear in all children ( it’s related to general intelligence- average or above), might be encouraged more in particular societies ( western, literate)
although it is common to all people but it may be restricted to social functions like law or trade in less literate societies.
In the west, enculturated adults don’t spend their entire lives in logical mode:
if you look across cultures historically ( through literature), or cross-culturally concerning people alive today, or within a given culture across differing groups or concerning a particular individual ( either longitudinally over the developmental period OR across various areas of life) logic and reason aren’t the rule but the exception.
Should we expect woo-believers to surpass what most people don’t achieve universally or across the board?
Regarding oral versus injected polio vaccine and the attitudes of antivaxxers…..
It depends on the antivaxxer. But remember that in the US, only the injected one is available, so of course that’s the one they’ll revile. In other countries, they go after the oral vaccine, since that’s the one that’s given. And I’m not just talking about the crazy religious authorities spreading conspiracy theories about Christians attempting to sterilize Muslims through vaccination. I’ve seen antivaxxers in the US attack the use of OPV in other countries. It’s the fact that it’s a vaccine.
I do think for a lot of them, it started out as needle-stick fear (which is quite understandable; that’s right up there with reactions to spiders and snakes as a primal, gut response to danger) combined with the unpleasantness of watching your child suffer the pain of injection while you hold them down. Just watching them scream because of what you want done is enough to trigger guilt in most parents. But once they have justified that fear by latching onto anti-vaccination, it’s no great leap to hate other vaccines which are not injected. Especially after the rotavirus vaccine debacle. (Lots of US antivaxxers bring that one up, even though it’s been off the market for ages.)
No left-wing or GLBT-friendly Christians, you say? Why look, here’s a whole church full: http://www.mcctoronto.com/
Here’s a left-wing politician who used to be a Untied Church minister and performed same-sex marriages: http://www.cheridinovo.ca/blog/about/
And over here, we have a former nun who’s been a left-wing activist since she first took her vows: http://www.regiscollege.ca/faculty/mary-jo-leddy
And in case you were planning to argue that Canada doesn’t count, I’ll remind you about this shooting in Tennessee where a liberal church was the target: http://en.wikipedia.org/wiki/Knoxville_Unitarian_Universalist_church_shooting. That’s right, there’s a liberal church in Knoxville Tennessee. Who would have guessed?
PGP, the world is much bigger than your little corner of the US. Just because you personally don’t know any progressive Christians doesn’t mean they don’t exist.
too many links! I was just trying to point out to PGP that progressive Christians do exist, even if she doesn’t know any.
Ahh, but those aren’t true Scots…i mean, Christians.
Identical twins have identical DNA… yet the probability of both twins getting autism, is somewhere between 63 and 98%
Does’t this prove that autism couldn’t possibly be a genetic disorder???
I’ll take “Not understanding how genetics work” for one hundred.
Incidentally, I’m an identical twin, and my twin has Asperger’s syndrome.
I thought the camel was in the eye of the needle…
“The health department I work for in Australia has developed a nifty little smartphone app that gives people reminders as t when their vaccinations are due (and kids’ vaccinations too). It’s being advertised on TV with a nice, soothing jingle.”
Might be more effective if there was a ringtone consisting of a classical whooping-type cough. People might move away from you on the bus, but that’s not a bad thing.
I thought the camel was in the eye of the needle…
It turns out that a camel *can* fit through the needle if you have a strong enough blender, but the alarmists become even more concerned about the additional ingredient in the vaccine.
That would not stand, yet the original is to be given a pass. And like all the other comments in this vein, none of the comparative items fictional or not, presume a deity. And they actually exist.
To argue against the beauty and reality of music would be ridiculous. And Wesleyanism. No, not Crusher.
The humble declarations of those with a personal relationship with The Great Maker would have resulted in blasphemy charges for the well meaning heretics not all that long ago.
That they still happen today boggles. Sanal Edamaruku driven from his home in Mumbai by blasphemy charges brought by the Catlicks because he exposed their tired old weeping Jebus con at the request of a TV station. Leaking plumbing, and the miracle of capillary action.
As nice as the religious versions heard here appear to be, they are lost in the noise of the tens of thousands of versions of that myth alone. The sheer number of interpretations of Jebuswoo, each arrogantly claiming to be correct one, bodes ill for the veracity of any of them. The Buddhists can’t even agree.
I don’t have an interpretation because I don’t do that for Dickens or Dumas or Fitzgerald, so…
What if the real one is the one with rattlers?
Why are we here?
Me: Not really sure, buckle up and enjoy the ride
Believer: God, hold this snake will ya? Live? Your faith is strong. Die? doG has other plans for you. Win win.
Why people who display ability and acumen via logic, reason and critical thinking for many other topics, but choose to turn it off for this most dangerous branch of woo is the puzzler.
Indoctrination and Tradition!! And various forms of peer pressure. Belief in belief…
Sadly the nice religious people like those here and the very liberal friend mentioned earlier (a diaphanous christian, all of whom would be just as nice sans halo) appear to be vastly outnumbered by the nasty ones.
The ones running Canada are gutting science funding. And my taxes pay for religious schooling by an international child rape ring.
The authoritarian assholes are not the result of religion, it is the result of them selling it to the masses long ago. Neither is benign, nor harmless.
Sorry, I didn’t broach the subject but it deserves no less refutation and arguably more scorn than any other unsupported claim put under the microscope here.
The Buddhists can’t even agree.
Hey, I’m Theravadin — you can’t expect me to compromise with a Mahayanist like Narad.
Julian Frost: I was only posting the article here because it seemed to cover both topics in the thread. That wasn’t written by me, nor do I endorse the ideas found in it.
“This is why you should know that this is the best, most extraordinary, and amazing thing that the Tathāgata teaches that all dharmas are without origination, without cessation, without characteristics, and without conditions. That it causes people to have confidence in it is twice as amazing.”
“No one shall expel us from the Paradise that Cantor has created.”
I have 2 kids, one with ASD and one with AS. (They both also have ADHD). It wasn;t until well after they were diagnosed that i was convinced I had AS. I couldn’t see it in myself because of my own preconceptions. I have a good radar and I can now see it throughout my family. My nephew was also diagnosed ASD, making 3 in their generation, while nobody was diagnosed in previous generations until adulthood, explaining the sudden “epidemic”. But I’m sure you’re aware of that. What i want to add is that when I see parents claiming that their child’s autism was caused by vaccinations, I see them as being unable to see it in themselves, and the fact that they want to blame outside influences to fit their preconceived notions backs that up.. I question whether the questioners have autistic traits.
HDB and Narad, you may be surprised to learn that I created you.
A Buddhist master I read said so whilst quoting Buddha – “there is no creator but the mind”. Therefore it must be. He thinks it is a divine idea.
A proportion of the population will sadly no longer believe what any official sources say about vaccines, because they need look no further than the truth about cannabis, and how governments and commercial interests put pressure on academics to toe the line while shady shareholders profit.
Can we blame them?
I had heard about autism 25 years ago, longer then that actually, seeing as how I’m 42 now and when I was 18, y fiance at the time had a roommate who had autism. He told us about it, granted he learned about it back in the days when it was still being blamed on cold, heartless mothers. His special interest was reading and so he read every book on autism he could find (this was back in the late 70’s early 80’s). He learned what the symptoms were, began to recognize them in himself and learned to suppress them so he could pass as normal.
At that time, I never would have thought I’d be in a relationship with an autistic, nor have an autistic child of my own. Now that I do, and having learned the history of autism and knowing what I know about it now, I feel so sorry for this man. I’d love to be able to find him again and tell him it wasn’t ever something he needed to change or hide. But I can’t remember his last name.
Oops, my bad. I guess it’s not quite 25 years since I knew this man. It’s too early in the morning for math. Either way, I had heard about autism before I knew this man and he told us he was autistic. I believe I first learned about it when I was in high school. Temple Grandin had an autism diagnosis prior to 25 years ago too so not sure what the Dachel bot is talking about there.
@ Lara Lohne: Dachel claims “there were no autistic children 40-50 years ago”…yet conveniently *forgets* how autism did not appear 1968-1980 inclusive, in the DSM II:
“DSM II (1968)
[autism was not mentioned; the word appears only under the following category]
“295.8 Schizophrenia, childhood type
This category is for cases in which schizophrenic symptoms appear before puberty. The condition may be manifested by autistic, atypical and withdrawn behavior; failure to develop identity separate from the mother’s; and general unevenness, gross immaturity and inadequacy of development. These developmental defects may result in mental retardation, which should also be diagnosed.”
So what diagnosis did these children/young adults, seen in this 1972 video have? Schizophrenia? Mental Retardation? Autism? Dachel is old enough to have seen this television documentary and the many clips of the video that were featured on television news programs, throughout the United States. Many of the “AoA groupies” are old enough to remember “Willowbrook” as the shame of our nation.
A proportion of the population will sadly no longer believe what any official sources say about vaccines, because they need look no further than the truth about cannabis, and how governments and commercial interests put pressure on academics to toe the line while shady shareholders profit.”
“Can we blame them?”
Aside from whatever mystical Truth there is about cannabis that we’ve been prevented from realizing, yes, we can blame people who are too lazy to seek out evidence and take refuge instead in comfortable conspiracy theories.
@ Mephistopheles O’ Brien: I’m thinking we have yet another sock puppet of the pothead troll.
Last comment should have been addressed to Dangerous Bacon.
lilady – I’m sorry you weren’t talking to me, because I was thinking the exact same thing.
@Dangerous Bacon, back before the science was good enough to know either way, cannabis was blamed for psychosis and schizophrenia wherever possible. It was a fair punt but it’s now been disproved, and using pretty much the same level of evidence as is used to refute the lie that vaccines cause autism.
Even now, in 2013, we still suffer from the media, politicians, the judiciary, the police, academics and medics all continuing to support the myth the cannabis can cause psychosis.
So why would anyone believe what they are told about vaccines? Can anyone explain the difference because if there is one, I can’t see it.
Have you got anything to add to this discussion about vaccines and the totally debunked theories that vaccines are linked to the onset of ASDs, Applecat? Or, are you just trolling?
Accepting your claim about “cannabis was blamed for psychosis and schizophrenia wherever possible” for a moment for the sake of argument – saying that doesn’t work here.
You (claim to) offer an example of over-reaching, making a call when there was no (or insufficient) evidence.
Ironically, your analogy is better suited to those that point at vaccines as causing autism – they are over-reaching, pointing at one causing the other without substantiative evidence.
In the autism case there is plenty of evidence showing vaccines don’t cause autism. (I’ve give one in my location – there are plenty more. There is also plenty of evidence pointing to the dominant role of genetic in autism.)
Regards cannabis and psychosis, I would suggest you check the medical science literature such as this study from New Zealand. A quick inspection suggests the modern literature doesn‘t fit your claim.
@ Grant: Unfortunately, that 2006 BMJ article is behind a pay wall. Here’s a 2013 abstract from PubMed about Cannabis and psychosis:
Does anyone have a better study than this? It appears to disprove any suggestion of a causal link, and it’s not a placebo controlled double blind trial.
“A recent systematic review concluded that cannabis use increases risk of psychotic outcomes independently of confounding and transient intoxication effects. Furthermore, a model of the association between cannabis use and schizophrenia indicated that the incidence and prevalence of schizophrenia would increase from 1990 onwards. The model is based on three factors: a) increased relative risk of psychotic outcomes for frequent cannabis users compared to those who have never used cannabis between 1.8 and 3.1, b) a substantial rise in UK cannabis use from the mid-1970s and c) elevated risk of 20 years from first use of cannabis. This paper investigates whether this has occurred in the UK by examining trends in the annual prevalence and incidence of schizophrenia and psychoses, as measured by diagnosed cases from 1996 to 2005. Retrospective analysis of the General Practice Research Database (GPRD) was conducted for 183 practices in England, Wales, Scotland and Northern Ireland. The study cohort comprised almost 600,000 patients each year, representing approximately 2.3% of the UK population aged 16 to 44. Between 1996 and 2005 the incidence and prevalence of schizophrenia and psychoses were either stable or declining. Explanations other than a genuine stability or decline were considered, but appeared less plausible. In conclusion, this study did not find any evidence of increasing schizophrenia or psychoses in the general population from 1996 to 2005.”
I still believe vaccines do not cause autism and I still believe cannabis does not cause autism. I believe what the government says about vaccines, I do not believe what the government says about cannabis. What is so hard to understand about that?
*does not cause psychosis.
Strange, I can read it (which is odd as I’m paywalled on most things). I wasn’t after discussing this—it’s well off-topic, after all—but just offering a pointer to a summary of the field that Applecat can read for themselves as in the ‘Epidemiological evidence’ section there.
The bigger problem for Applecat is that their comparison doesn’t work (as I explained earlier) – the comparison offered is essentially the complete opposite to the situation for vaccine/autism.
“Does anyone have a better study than this? It appears to disprove any suggestion of a causal link, and it’s not a placebo controlled double blind trial.
You can bet the farm that I have a more recent study of “skunk” (high potency cannabis) use and the onset of psychosis:
Pharmacopsychiatry. 2012 Nov;45(7):269-74. doi: 10.1055/s-0032-1306310. Epub 2012 Apr 17.
Neurocognitive function and schizophrenia-proneness in individuals dependent on ketamine, on high potency cannabis (‘skunk’) or on cocaine.
Morgan CJ, Duffin S, Hunt S, Monaghan L, Mason O, Curran HV.
Clinical Psychopharmacology Unit, Research Department of Clinical, Educational and Health Psychology, University College London, London, U.K.
Ketamine, psychostimulants and cannabis have all been associated with psychotic phenomena but no study has directly compared users of these drugs.
The aim of this study was to assess schizophrenia proneness and neurocognitive function in individuals dependent upon ketamine, cannabis and cocaine.
130 volunteers – 29 ‘skunk’ users, 22 cocaine users, 21 ketamine users, along with 28 ‘recreational’ poly-drug users and 30 drug-naïve controls – were assessed on the Schizophrenia Proneness Instrument, Adult version (SPI-A). They were specifically asked to rate symptoms when not under the acute influence of a psychoactive drug.
Ketamine and skunk users manifested the greatest attentional and cognitive disturbances. The symptom profile of the dependent ketamine users was very similar to that of prodromal individuals who transitioned to psychosis.
Given the recent rapid rise in use of high potency cannabis and of ketamine, these findings are important and clinicians should be careful to rule out the effects of persistent drug use, especially in users of ketamine or skunk, when assessing an individual’s risk of psychosis. A longitudinal study is needed to differentiate which basic symptoms persist following abstention from ketamine and skunk.
© Georg Thieme Verlag KG Stuttgart · New York.
[PubMed – indexed for MEDLINE]
And…your point being? What do your posts have to do with the subject of this blog?
I’m still thinking you are a sock puppet of “Jacob”, the pothead troll who was banned from RI and other science blog.
Greg, it’s very simple.
Science says vax not make autism.
Officials say vax not make autism.
Science says pot not make psychosis.
Officials say pot make psychosis.
Your n=131 BMJ study was included in the meta-analysis for pubmed 19560900 (n=600,000), along with all others of it’s ilk.
Remind me, I’m no expert, what is the typical population size for the average study which proves that vax not make autism?
Yes lilady I did read and understand the BMJ study and no id does not prove that cannabis causes psychosis. You’ve misinterpreted it. Correlation is not causation, and constellation of symptoms is not disease. If Hannah Poling does not have autism, then skunk does not cause psychosis.
Rumour has it, that some drugs can cause transient symptoms of psychosis, from the perspective of an external assessor, but that’s not the same as transiently causing the same experience from the perspective of the ‘sufferer’.
There are drugs which do that kind of thing, but neither skunk, cannabis, ketamine or cocaine are amongst them. Just ask anyone who’s experienced genuine psychosis, who’s also used those drugs. They are not the same. That Morgan study is flawed.
And…your point being? What do your posts have to do with the subject of this blog?
I’m still thinking you are a sock puppet of “Jacob”, the pothead troll who was banned from RI and other science blogs.
I guess my evidence is better than yours, hence that ad-hominem “you are a banned illegal poster therefore your argument is invalid” gambit is your only place left to hide.
Got any hard science?
How did we even get into a debate over it? Please recheck the evidence and stop making a fool of yourself.
The point is, with overwhelming evidence to the contrary, somehow and army of stupid rises up to defend the myth that vaccines/cannabis cause autism/psychosis every time.
As the antivaccine troll is to you, you are to the pro-cannabis troll. You should read Ben Goldacre on pot.
Applecat #281 – ignoring whatever is said about cannabis, your comparison doesn’t work.
Also: It looks to me that you haven’t read the summary of the field I pointed to. It’s not my field but it’s quite clear it’s more than rumour, etc. – your wording suggests you’re dismissing too readily. (It is an effect only for a minority, but one that appears to have good reasons to be considered to be ‘real’; the paper indicates the question is more ‘if’, than ‘how’.) Not going to write more on this as this is your interest, not mine. More important is for you to step back from the details on it and see that the comparison you’re making doesn’t work.
Yes, there’s a trust issue for a small number of people over vaccines, but my experience is that it has nothing to do with evidence for or against,* but with these wanting to make their own decisions rather than rely on experts. (With the silly results that will most often bring. It’s also why I wrote an article titled ‘Medical DIY’, or something like that, a while ago. It makes me wonder if I should write one titled ‘Science DIY’…)
* Whatever ‘evidence’ they present is used to prop up views they’ve already convinced themselves in.
Applecat: Have you got any hard science about the topic of this blog?
I’m still thinking you are the pothead troll.
Applecat, do you use cannabis?
No Alain a friend of mine is seeking medicinal cannabis for her son but the child psychiatrist says no it might cause psychosis!
lilady I’m rather blown away by the doublets in the bronchi study at present (pubmed 22926922), and wondering why on earth it hasn’t been repeated already? Is it just a folly, put out to stall the antivaxinites?
Applecat, this is a discussion about VACCINES, not cannabis. If you want to campaign for medical cannabis use, go do it somewhere else. This thread already got derailed enough by arguments about faith.
lillady – trolling in some sort of way; certainly ignoring that their comparison doesn’t work while persisting off-topic.
and wondering why on earth it hasn’t been repeated already
You could check the publication date (April 13), eh? Bit hard to have repeated something that’s only just come out…
Is it just a folly, put out to stall the antivaxinites?
Pining for conspiracies is always a bit silly, eh?
At least we can now rule this out as a possible explanation for why John Lilly felt the need to warn Gerald Ford of the Earth Coincidence Control Office.
I used to know (virtually) one of his acolytes/carers who said he spent a lot of time up a tree tripping on ketamine or having adventures in a parallel universe, depending on your belief system. I believe he also had breast implants surgically inserted, for reasons that were never entirely clear to me, though I can’t substantiate that. He’s one of those authors who, like Gurdjeff, I wasted a lot of time trying to make some sense of some years ago.
^ That should have been ECCO’s competitor, Solid State Intelligence.
I think it was Enright who climbed a non-consensus-reality tree, having awakened his early hominid genetic memories.
“We might take Gurdjieff as an example of a master bullshıtter and Meher Baba as an example of a master horseshıtter.”
Applecat is Jacob/Julian, the pothead troll. Look at his FB page “Cannabis for Autism”. He’s been posting that doublet bronchi comment all over the internet and he has his comments on this thread up on his FB page:
Yes Narad, no matter how much ketamine can make you hallucinate or climb trees, it does not reproduce the experience of psychosis. Wrong drug. Guess again.
Comparing autism and schizophrenia illustrates the point nicely. You can find plenty of eloquent high functioning people with autism or asperger’s who have experienced psychosis (around 6% vs 1% in the normal population).
While someone comparing two lists of symptoms for the asperger when a young teen vs the symptoms for the asperger when suffering early psychosis in their late 30s may see similarities, a quick check with the asperger in question will reveal that the internal experiences could not be more different, and are clearly not the same things.
@lilady – I will give him this, he certainly is persistent…..
@Lawrence, lillady – a talking robot, it seems – ignores when their errors are pointed out and just babbles on some more.
Lawrence, Grant and Narad: I’m sitting back watching the show.
I’m ignorant about PTSD myself, though I may have an undiagnosed case of it, I just think of it as a euphemism for psychosis caused by the extreme stress of war or similarly awful situation. Why is the push to prove cannabis treating ptsd important? Surely it’s the same as treating psychosis, and there’s nothing superior to cannabidiol in that respect.
I have never used illegal drugs or any psyche meds, I have suffered psychosis, and otherwise consider myself to have a high number of asperger-like traits.
^Comment #303 was meant for the other thread.
If you don’t think that the level of delusional thinking required to try to warn the president of an alien conspiracy is a psychotic symptom, you don’t have much real-world experience with the subject. (Nor do we need to stick with just Lilly, not at all.)
Indeed, that you think it “make[s] you hallucinate” suggests that you have only a passing familiarity with ketamine in the first place. This doesn’t appear common at recreational doses, generally requiring nearly incapacitating doses and somewhat contrived settings for open-eye visuals. Where it is best known is in emergence from surgical anesthesia. In neither of these situations is one going to be in any particular condition to act on the perceptual disturbance.
In other words, you’re a moron.
Frankly, I suspect one could get a contact buzz just by reading your urine toxicology results.
Here Jacob/Julian, the statement you submitted to Parliament:
“Home Affairs Committee – Drugs: Breaking the CycleWritten evidence submitted by Julian Pursell and Cannabis for Autism UK (DP175)
The current policy is neither fiscally responsible nor is it grounded in science, health, security or human rights. Current criteria for measuring the effectiveness of policy are inadequate. The government has shown serious lack of judgement in its treatment of Prof. Nutt, losing the respect of our teenagers and future scientists. Police expenditure cannot continue to cope with the cost of prohibition. The war against people who use drugs has been lost, it’s time to make reparations. Reductions in problematic drug use must come from better education, better social support services, ending criminal sanctions and enriching the lives and environments of those who use, or are at risk of using.”
“… I am a medical cannabis user. My human rights are utterly violated by the prohibition of my medicine. Banning someone’s medicine is on a par with banning food. A very unpopular move. I have spoken to numerous focus groups; teenagers and homeless drug users. I wish to credit these people for their valuable and frank input. There are now literally hundreds of peer reviewed, scientific studies that prove the efficacy of cannabis in the treatment of MS, Crohn’s disease, fibromyalgia, spinal injury and a wide range of other conditions. I would suggest that you refer to the excellent National Organization for the Reform of Marijuana Laws (NORML) summary of research “Emerging Clinical Applications For Cannabis & Cannabinoids. A Review of the Recent Scientific Literature, 2000–2011.”
Troll also mentions Ashanta Yoga *treatment* for drug users (remember one of Jacob’s hundreds of sock puppets was “Ashanta Yogi”?)
I’ll be offline for a while on an errand and I’ll be bringing back the popcorn to watch the show.
This whopper seems to derive from here (which is rather more reserved), by the way, courtesy of the allied “Cannabis for Psychosis” FB page. Unfortunately, it does nothing to suggest blowing weed is the way to go about this. Julian has expressed the opinion that psychosis is just a misnomer for “Kundalini opening.”
As for the identity of Applecat, one might note that Julian posted a link to the page of a Canadian DJ who goes by that stage name. One might wonder whether he asked before appropriating it.
@lilady I was laughing so much I couldn’t finish the document, thanks for making my day. Is it for real or is it some kind of spoof? It appears to be genuine.
@Applecat – if you’re not Jacob / Cannabis Troll, I’ll eat my hat…..
@ Lawrence…remember “Mindi the Hindi” another sock puppet of Jacob, ***Julian, Ashanti Yogi and Applecat, who I *outed* at the end of Orac’s post, here?
***Julian Pursell is the Troll’s real name
In which Julian certainly seems to announce his intention to pop by and see if he can get banned: http://i.imgur.com/Y7zyRN1.png
This is lifted from the comments to one of the two FB pages or Julian’s WP site; I don’t particularly care to sift back through them again.
Which one would that be?
Was he banned for life?
What did he do?
@Jacob – just give it up….you want to 4/20 all the time, that’s your business. Why should we give a damn?
Why do some people dislike some autistic people so much?
Surely if something can reduce symptoms of autism then it may also reduce some hatred of some autistic people?
This may in turn reduce the level of misplaced anti-vaccine sentiment which is attached to the hatred of the behaviours of some autistic people.
Don’t you feel a responsibility to educate the (still largely ignorant) medical establishment about such issues? It’s clear that cannabis can help my friend’s son, his GP is in favour, the specialist has thrown his hands up in the air and screamed ‘nooo, teh vaccines!’
Help us to end the stupid.
@lilady #268: Isn’t Donald Trippett in his 70’s now? Wasn’t he ‘one of the first’ autistic patients of Dr. Kanner back in the 1930’s? Clearly the Dachel bot doesn’t know what she’s talking about. But yes, until a condition is defined and given a label, it’s really hard to diagnose someone with it.
It makes me wonder, back in the day, the number of people and/or children that may have been subjected to exorcism rites by the religious leaders of the day (who, if you go back far enough, were also the medical providers of the day) because they hummed, rocked, flapped their hands, spun non stop, etc. but they were obviously by today’s standards autistic, not possessed. A little bit of historical reading would lead one to believe (if one knows what the characteristics of autism really are) many, many people from history, including very well known and talented individuals fell on the spectrum. Sure, they had no ‘label’ because a label didn’t exist during their life time. The label hasn’t even been in existence as a recognized diagnosis until very recent history, less then 100 years ago. Refusing to accept what is very obvious is only deluding oneself, but nobody else.
Look what Julian Pursell/Jacob/Applecat posted on his “Cannabis for Autism” FB page yesterday. (He’s defending a drug -addled caregiver who sodomized and brutally beat up an autistic young man)
“I believe that this boy may not have exhibited such severe symptoms which led to this awful treatment by a nasty man, if he had been able to have cannabinoid medication for his autism.
Prohibition did not cause this, but it may have prevented someone from preventing this, which is equal to causing it in the eyes of the law.
Simard pleads guilty to attempted murder | Local | News | The London Free Press
“The chilling facts of the boy’s savage beating by fists and feet are not in dispute.
He was left to die in the woods, his eyes, ears and nose bloody, teeth fractured, brain damaged. Months later, he cannot walk, cannot eat properly, cannot use the toilet and at 12, has to wear a diaper.
The equally chilling facts the assailant gave as reasons to hurt the boy are not in dispute.
“He’s a drain on society. His life is meaningless. It’s no big deal,” Greg Simard, 24, told police. “I did it for my country. . . . Um, maybe someone should come and shake my hand. . . a few pats on the back. . .”
What remains in question now is this: Can Simard be held criminally responsible for the beating, or does he suffer a mental disorder that gets him off the legal hook?
Simard pleaded guilty Friday to attempted murder Sept. 9, 2012, of the autistic boy under his care at the Child and Parent Resource Institute (CPRI) in London.
As a statement of facts agreed by both the Crown and Simard’s lawyer was read in court, Simard himself showed no emotion.
Members of the boys’ family sobbed.
“It is agonizing as a parent to listen to someone . . . casually accounting how they (assaulted) someone because . . . of a mental disability, that they decided to be judge, jury and executioner against someone who is effectively defenceless,” his father said outside court.
Many family members heard for the first time Friday what happened to the boy and the reasons Simard gave for hurting him.
“The evil things he said . . . they were broken hearted to hear someone actually say those words,” the boy’s father said.
After Simard was found guilty, and the facts read into the record, the Crown and Simard’s lawyer began arguments over the man’s mental state at the time of the assault.
Dr. William Komer testified Simard was likely schizophrenic and didn’t have the ability at that time to know his actions were wrong.
But Dr. Phillip Norris told court Simard suffers from several mental disorders, including some caused by substance abuse, but knew what he was doing was wrong.
Ontario Court Justice Jeanine LeRoy didn’t rule on the matter Friday.
The boy’s identity and that of his family are protected under a publication ban.
Severely autistic, and non verbal, the boy was taken to CPRI in June 2012 for assessment and treatment.
His parents hoped they’d learn how to better manage his autism, which expressed itself on good days in loving hugs and smiles, happily listening to music, and on bad days in angry outbursts and self harm.
The boy came home every weekend, and went back on Sundays. The week he was beaten was to be his last at CPRI before being returned to the family full time.
He was dropped off at 7 p.m. Sept. 9 at the cottage on the grounds on Sanatorium Rd. he shared with six other developmentally delayed children.
Working that night was Simard, an A-student in Fanshawe College’s developmental services worker program who got one of the few highly coveted placements at CPRI.
Simard told his co-worker that night he heard noises and three times went into to check on the boy.
Just before midnight, Simard, with a blanket over one arm, led the boy out of his room and told the co-worker he was taking him downstairs.
About five minutes later, the co-worker went downstairs and found no one.
She reported a missing person to her supervisor, just before Simard came back, with blood on his shoes.
The co-worker asked where the boy was.
“You know what happened,” Simard replied.
I don’t, the co-worker said.
“Shut up or I’ll kill you,” Simard said.
Police were called and began a search in the dense, dark woods outside CPRI. A police dog found a bloody towel and underwear on a path and officers heard groaning nearby.
About 20 metres off the path, 60 metres west of the cottage, police found the boy, beaten and naked from the waist down.
Eight months later, the boy can no longer stand or walk properly, the part of his brain handling balance damaged. His teeth are so damaged he cannot bite properly and he will need long-term dental surgery. His right eye still doesn’t open fully and his hands shake so much he cannot drink without spilling.
Simard was arrested Sept. 10 at a parking lot on Clarke Rd. and asked police to call a doctor, instead of a lawyer.
“I’m his bitch and he’s my master,” he told police.
While getting searched at the police station, Simard shouted obscenities. His underwear was filled with excrement, police reported.
In his cell he seemed at times rational and at others times made no sense while chatting with an undercover officer.
But he offered chilling explanations for his assault in an interview a day later.
“I just grabbed him by the hand and said come for a walk. . . . I hope he’s dead. He’s a drain on society,” Simard told Det. Amanda Pfeffer.
Questioned about the boy’s underwear being torn off, Simard said, “I didn’t sexually assault a retarded kid. That’s disgusting.”
He also told police he sometimes takes orders from God. “I’m not God but I take orders from myself.”
During the interview, Simard grabbed Pfeffer’s wrist and clenched his fist, and grabbed the collar of her shirt before another officer came. Pfeffer received no injuries.
Simard also pleaded guilty Friday to assaulting a police officer, uttering a death threat to the co-worker and an indecent act, after being spotted naked in public before the assault.”
Julian Pursell/Jacob/Applecat, you are one sick drug-addled bastard. I feel dirty even reading your vile posts.
lilady, I’ve just checked that facebook post and there is no indication of defending the scumbag who beat the autistic kid really badly.
The OP seems to be taking issue with the prohibition of cannabis medicine.
Where does it say something in support of the criminal? You’re seeing something that isn’t there. Quote the text you mean. I can’t see it.
Scenario A: Autistic young adult at home with family and cannabis medicine.
Scenario B: Autistic man without cannabis medicine too much too look after at home so is in a care home at risk of being brutalised by a relative stranger.
I know people who are from both scenarios. Which would you choose? If you say no to cannabis medicine, then are you not saying yes to potential brutal sodomisations of autistic children, as you say.
You didn’t have to “check out” that comment Julian Pursell…you wrote it on your blog. You are blaming the victim, a child with autism who was place in the Center for treatment. You call the drug-addled psychotic sodomizer a “nasty man”.
“I believe that this boy may not have exhibited such severe symptoms which led to this awful treatment by a nasty man, if he had been able to have cannabinoid medication for his autism.
Prohibition did not cause this, but it may have prevented someone from preventing this, which is equal to causing it in the eyes of the law.”
Just go away now Julian Pursell; you are a vile drug-addled POS troll.
This is mildly amusing, although Julian is apparently too addled to actually provide the requisite details. (He seems to have morphed in the meantime from “cannabis4autism” to “lokasamasta” to try to slither back in, as well.) I mean, seriously, how does one manage to get banned from a sewer like Reddit?
He also has a tantrum when his adoring FB audience fails to do his bidding and vote up his Reddit comments. He immediately fails to make good on the threat to stop posting until they obey and instead gets drunk and starts complaining about people unliking his FB page and not paying his bills.
Julian Pursell has tried repeatedly to spam my blog with THC this, THC that, and no real substance. I think he’s zonked out of his mind.
How about scenario C, Julian? Scenario C: A child with autism gets the evidence-based care he needs, the family gets the support they need, and the child doesn’t get a psychotropic shown to make things worse and really mess with the developing brains of children and teens.
Far be it from me to upset the applecat…
but Julian seriously:
if you like to smoke [email protected] and are an adult- if it seems to help you feel better, it’s a lifestyle issue and your own business.
you don’t need to try to justify it by saying it helps people with autism or can be a useful med et al,
that’s entirely another issue.
Do you have research that shows this? That might be a place to start.
Some people like to smoke weed, some drink wine, some like house music… those things need not assist others to be enjoyable.
You should relax: the trend seems to be towards legal tolerance.
Wait, you smoke and do yoga, you are relaxed.
Riiigghht, now I’ve worked out why applecat thinks it’s OK to start bleating about cannabis on an autism thread.
Is anyone else getting thoroughly sick of the narcissistic trolls?
I see that the pothead troll has taken advantage of my relative inattention to the comments over the last two or three days to return. That’s about all I can tolerate. Goodbye, “Applecat.”
Here’s hoping that Julian Pursell does a disappearing act. Someone ought to look into this creep’s contacts with young people.
@ Lara Lohne # 316:
Sorry Lara, that I didn’t reply to you comments about Donald Triplett.
Donald was alive in 2010, when this article was written about him. http://www.theatlantic.com/magazine/archive/2010/10/autisms-first-child/308227/?single_page=true
It is a fascinating article about his life in the early days and his life in 2010…he was driving a car and was a part of the community in the same small town where he was born 80 years ago.
The comments are *interesting*…especially the few comments that tried to promote Dan Olmsted’s new book, Age of Autism. The Dachel bot didn’t comment but Ginger Taylor and Maurine Meleck showed up. According to Meleck, Donald *recovered from many of his autistic behaviors*, because he had gold salts treatments (for arthritis…not autism).
I can’t help but offer one more gem from Julian’s FB page. I really would expect more from a bunch of quasi-scientific reefer types.
Leaving aside the bioavailability of CBD when ingested in this fashion… well, I don’t know about y’all, but the last time I had several gallons of leaf on hand, the mail culinary task was getting rid of the water-soluble part.
mailmain culinary task
but my parents never found the “magic mix” of drugs, and the meds they liked were real zombiefiying meds, they never got their “real son” back, and their (unscientific quack) beliefs on autism where harmful and (now they cant affect me anymore)just annoying, it got so bad that now im just glad im 18 and they never managed to gain extended custody(which was something they wanted to pursue).
their “real son” never asked questions or was unsatisfied with the argument from authority , their “real son” would sit still and take his homeopathic alcohol based spray, and not complain about wasting 100’s of dollars on bullshit, their “real son” wouldn’t worry about not getting vaccinated, their “real son” wouldn’t be an atheist i mean an agnostic could be tolerated but AN ATHEIST!
their Real Son was just just hidden under a bunch of meds and fear of non-acceptance that they never got to know him.