Feb 25 2013
Blame and magical thinking: The consequences of the autism “biomed” movement
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Appalling stuff, but so revelatory of how the human mind is prone to work. One detail: “There are also many, many mothers who are hearing the following words for the first time, “Your child has autism.” “….would any real doctor/developmental psychologist actually talk about autism as though it were measles? “Have” autism? I thought we were all at various points on an autistic spectrum, just as we are on various others. One more detail casting doubt on this strange person’s narrative.
Thank you for this post! I am the mother of a young man with autism/Asperger’s syndrome; over the years I have been involved with special education issues and have gotten to know a lot of parents with kids with various special education needs … including one of the “thinking moms.” Sigh. The post you discuss—the post itself was chilling enough, the comments even more so. They presented not only a litany of pseudoscience, but also a clear picture of the other horrendous stuff some of these parents put their kids through: restrictive diets, clay-based “detox” drinks, chelation, hyperbaric chambers, etc etc. I read this blog off and on (mostly to torture myself, I guess), and have read about them shoveling castor oil and coconut oil down their kids’ throats, putting them through acupuncture, craniosacral therapy, back-to-back 24/7 sessions and specialists, and then marveling at the resultant gastric distress and/or bad behavior … blamed on autism. The most frightening thing to me is that they feel their campaign is gaining strength; I do hope they’re as misled on this!
My only slight quibble with this comprehensive and interesting post would be to prefer a person-first terminology (children with autism rather than autistic children).
@rmgw, I’ve heard that point before (I think it might be Grinker who first introduced me to the term “a drop of the aut”); a couple of years ago I commented to another SBM post that “Elizabeth Moon, in Speed of Dark, has a great line: All babies are autistic; some grow out of it. I think this has some application to the study; you see this divergence of behavior at a certain point. It may correlate to other environmental factors, but they aren’t the cause of it.”
You mentioned Food Inc a few times in your post. Do you have any columns or reviews of this film? I am a registered dietitian teaching nutrition at the college level, and this movie was recommended by someone whose credentials I respect. I’m interested in your viewpoint before I consider showing the film. Thank you
It’s worth mentioning that autism and vaccines aren’t the only cases that mothers will be convinced they ruined their kid’s lives. Pretty much any mother winds up feeling like they could have “done more” whether it was quitting their job to spend more time with their kid, taking up a job so that there’d be money to provide more opportunities, home-schooling their children to give them a better education, sending them off to a local school to get more socialization… and yes, half of it’s contradictory. It’s human psychology. We never feel like we’ve done enough for our children.
The narative regarding the St. Louis trip also kind of reminds me of that one movie, ”Love and Other Drugs”, where the guy is so focused on “curing” the woman he loves, that he doesn’t realize he’s making her miserable by dragging her to every new therapy (and yes, chelation therapy got a shout-out there).
Mountain Mama seems to me* to be suffering from a weird variant of Munchausen by Proxy, inviting attention and pity for herself for having ’caused’ something for which no rational person could hold her accountable.
It is one thing to cast about for explanations – no matter how improbable – and quite another to wear sack cloth and self-flagellate for a ‘sin’ one didn’t commit. Catholic theology has some strange features but I believe that ‘original sin’ is the only non-first-person transgression for which Catholics are culpable.
*not qualified to diagnose any medical or psychological condition but too cynical not to believe that the lady doth protest too much.
@lsimons:
I have not seen Food, Inc.; so I don’t know if it’s good, bad, or indifferent. I can’t speak for the rest of the crew.
Sounds like “Canary Kids” was written, produced and directed by a team of naturopaths. From “The Textbook of Natural Medicine” (2013), p. 937:
“No causitive agent has been found for this developmental disease [autism], although many theories abound, including vaccinations, a genetic link, nutritional deficiencies, and reactions to chemicals or other enviornmental factors.”
I suppose with this expansive view of what a “theory” is, we might also say there is a “theory” that the earth is 6,000 years old.
Well, Beth Lambert did say that a naturopath and a practitioner practicing “homotoxicology” were part of her “health care team.”
DugganSC “It’s human psychology. We never feel like we’ve done enough for our children.”
And of course, if the kids don’t “turn out”…If they have learning, mental health and/or addiction issues some people will insist that it’s because the parent’s didn’t do x, y or z – and if all else fails, the problem will be that the parents did too much.
And it’s not just parenting, it’s everything – the assumption that individuals have the power and are responsible for preventing bad things from happen enables us to live in a glorious fantasy were bad things don’t happen to conscientious people.
I’m suspect that it’s the allure of this control fantasy (even in the face of all the evidence) that fuels much of the pseudoscience you see.
It about as effective as knocking on wood or counting to an odd number before turning on the lights, but it’s a lot easier to fool yourself with pseudoscience.
Sorry, I digress.
@windriven
I come from a Catholic family, I learnt all the rules as a child. And you know what? Actually, refusing to vaccinate can be construed as a sin. Against 5th commandment. Because as a good Catholic you mustn’t kill, your own person included. So by extension you should not drink, should not smoke, should keep a balanced diet (which overlaps with the cardinal sin of gluttony, too). And you should follow your doctor’s advice to keep yourself in good health. Including taking prescribed meds and vaccinating. Guess that Mountain Mama haven’t read her catechism too closely, though.
@wndriven
Yes! Exactly what I was thinking, except I couldn’t remember how to spell Munchausen.
That, of course, is child abuse.
Munchausen Syndrome by proxy?
This is one of my favorite criteria in the indications for MSbP “A parent who appears to be unusually calm in the face of serious difficulties in their child’s medical course while being highly supportive and encouraging of the physician, or one who is angry, devalues staff, and demands further intervention, more procedures, second opinions, and transfers to other more sophisticated facilities.”
So a parent who is either unusually calm or angry and demanding when their child is sick.
Some thoughts
http://www.jaapl.org/content/34/1/90.full
@Alia
I was raised Catholic myself, though by the age of 13 or so I was moving with purpose toward atheism. Nonetheless, at my parents’ behest I attended parochial schools and by and large thank them for a decent primary and secondary education. You make a good point about the body-as-temple teaching, though that always seemed more theoretical than practical – at least in the community where I was raised.
@MTDoc
Child abuse is precisely what it is (IMHO). I have a strong libertarian impulse but it short circuits where children are concerned. Modern America treats even mild corporal punishment with contempt (and sometimes with the steel claw of the judicial system) but parents who fail to protect their children from horrific diseases are considered to be well within their parental rights. Go figure.
@mouse
Yeah, its not a perfect fit; that’s why I characterized it as some ‘weird variant’. But it seems to me that some of the broad outlines are there, for example “one who is angry, devalues staff”… MtnMama was done wrong by a medical-industrial complex that forced her to poison her child. Oh woe is she.
mtr:
I understand your concerns. But in this case there is there could be an argument based on the following quotes from Dr. Gorski:
@windriven
When I was a kid and getting ready for my first communion, we all got little books to help us prepare for our first confession. They included a list of questions to help us decide what is a sin. And I very well remember a question that went like “Have I always followed my doctor’s advice?” And there were also questions about alcohol and cigarettes and other substance abuse. So at least over here at that time this point was stressed.
Blockquote fail… (and I hope I did not italicize the page), the last bit is not a quote:
I personally don’t think it is normal to seek out someone to actually diagnose a child with something after being assured that child is perfectly fine. But then again, that is just me. My oldest has never been perfectly fine, and I would have rather not had to deal with all of the medical issues, ambulances, therapy hours and hospitals (note: this is the last week of cardiac rehab! Yippeee!).
@windriven – I don’t mean to argue that MtnMama is well-adjusted, only offering a side note of skepticism on the diagnoses of MSbP. It is a rather interesting topic in and of itself – but rather OFF-topic. So I will leave it be before DG swats me with his ruler.
Chris – “I personally don’t think it is normal to seek out someone to actually diagnose a child with something after being assured that child is perfectly fine. But then again, that is just me.”
I agree and disagree, I guess. Maybe it’s a matter of degrees. One of the boys in my son’s first speech preschool had been diagnosed with CP and autism. His mom said that she brought up concerns about his development at well-child visits after 12m and the pediatrician had reassured her. When he was not close to walking at age two and the doctor continued to reassure her, she decided to check with a second pediatrician and then was referred to specialists quickly.
Also I’ve heard several parents of children with HL say that they had to get second opinions or insist on referrals when their child’s speech was delayed before the hearing loss was discovered…Although, that is becoming less common now with newborn testing.
But these are cases where the child is clearly in the red flag area of standard milestones.
On the other hand, with my daughter (first child) I was anxious about several thing…such as her not walking at 16 months and some periods of severe tantrums she had when she was younger. I did trust my pediatrician’s reassurances. I am very glad I did and also that there are resources such as Quackwatch. It would have been very easy for me to fall for the ATTACH therapies if not.
mtr, I understand. I remember the “wait and see” days. But the difference she went to a DAN! doctor, and not another pediatrician. Also, we are not told the age of the child.
Our family doctor was perhaps a bit more vigilant about referring our son to a speech pathologist and pediatric neurologist because of his history of seizures.
@Chris – yeah, I know. I guess I’m trying to find the line between normally cautious and overly anxious or paranoid behavior. I’m focusing away from the extreme represented by MtnMama because I think that many folks aren’t extreme. They may find themselves struggling with a difficult but nebulous concern about their child at first, then get caught up in a lot of misinformation….leading them down a mistaken path.
Also, I’m probably focusing away from the MtnMama situation because it’s really sad and frustrating.
This is not a problem — you see, CDs and MP3 have one very important fundamental feature in common — they are digital! So it is digital recordings that cause autism, and now with digital video flowing through the air, surely we can expect a veritable tsunami of autism cases in the next five years!
So you’re saying that Sirius-XM Satellite Radio causes autism? I’d almost believe that.
Thanks, Dr. Gorski, for this comprehensive overview and the problems with “Almost Autism”. My hope is that the film doesn’t get made, but I think my hopes are footless.
Autism parent cedge20 wrote,
I must have a different circle of autistic friends and acquaintances, because to a person they strongly prefer “autistic” (sometimes capitalized) to “person with autism”. See, for example, Jim Sinclair’s 1999 article, Why I Dislike Person-First Language, or Lydia Brown at the Autistic Self-Advocacy Network, Identity-first language, published in 2011.
Admittedly, the number of children can make a difference too. I wonder if a large number of these children being overdiagnosed are either the first child (the parent has nothing to compare against other than their peer’s accounts of how their child is walking at 3 months and composing symphonies at year two) or second child (his older brother walked at 10 months. It’s 11 months now and Johnny just wants to scoot…). Or, as my mother used to joke (I come from a family with six children, as did my mother), “When your first child swallows a nickel, you rush them to the emergency room. Your sixth child swallows a nickel and you tell them it’s coming out of their allowance.” You learn not to panic.
And yes, most mainstream Roman Catholic teachings guide against abusing one’s body. How to interpret that varies from person to person. As with most moral teachings, the Catholic doctrine of Conscience comes into play where you will ultimately be judged not only in whether you did the right thing, but also on whether you did what you believed was right (how the overlap works is a matter of theological debate, but the rub of it is that a “good” action is only good if it’s both the right thing to do and you believe it’s the right thing to do. It’s not an easy teaching, since it basically states that in cases where we disagree with the dogma, we aren’t serving God by following the dogma without conviction, but if we break with dogma and go our own path, we still run the risk of being wrong and being judged by that. Straight and narrow path.
@David Gorski
“So you’re saying that Sirius-XM Satellite Radio causes autism?”
Depends on who you’re listening to
Ginger Taylor: http://www.blogger.com/profile/04200286625735078479
Impressive non-credentials!
My advice to MountainMama: chromosomal microarray (http://www.ncbi.nlm.nih.gov/pubmed/23425232). At least you will have a 10-20% chance of really knowing what to blame…
I’ve been educating people with autism for 11 years and have an 8 year old on the spectrum. I have worked with several “bio-med moms” and I believe that they genuinely want the best for their kids. However, at some point they internalized a message that their child is broken and can be fixed… If they find the right thing to do to make that magic happen. Imagine the pressure you’d feel if not only you thought you’d caused your child’s ASD but were also the one person that could fix it? It leads to bad things, like kids taking 30 plus supplements and day and being on diets so restrictive they have to be restrained from eating out of the trashcan after class snack. I wish there was someone “on our side” out there sharing better information, but alas nobody is going to make a living telling people their kids with autism are great.
Personally, I am firmly convinced that my husband and I did cause our child’s autism, as our families are full of what they call the broad autism phenotype. However, she’s fantastic so it doesn’t keep me up nights. (Well, actually, it does, because she doesn’t sleep a lot.)
@Chris -
But…,but… if a child is neurotypical, able-bodied and mentally and physically healthy, how can you get that life-giving Martyr Mommy attention?
They have all the “positives” of having a “broken” child, such as attention, unconditional positive regard from online support groups like AoA and TMR and from DAN! type quacks, and that sense of feeling special because they have magical intuition
. All that comes without the negatives like the intense care and support needed for a child who’s ill or disabled, hospital visits, the fear that every hospital visit could be the last, or that dread every morning when opening the child’s bedroom door.
There’s an interesting paper on “Munchausen’s by internet”* that has a section about this type of induced illness/factitious disorder inflicted on others.
I was actually an online FoaF of Emily McDonald, who’s mentioned in the paper. There was suspicion that she’d actually induced two of her labours early in order to experience again the attention and support she got after her first or second pregnancy ended in her giving birth to an extremely premature “micropreemie”. She was thoroughly convinced that no jury could find a mother of sick children guilty. The great news is that Dakota was really thriving last time I heard about her.
As a formerly sick non-NT kid who will not have children because of the risk of them inheriting one or more of my health problems, the thought of a mother who’s apparently actively disappointed that her child is healthy and NT, makes me want to throttle her.
My partner and I would be the type of mothers who would probably take “Your child is totally healthy and well” as the signal to throw a huge party, celebrating our gratitude that our kid wouldn’t suffer like we have. That’s why these Martyr Mommies, competing over who’s got the sickest, most “damaged” child, actually make me cry, or occasionally throw up.
Oh and YAY for the end of cardiac rehab. I know it must be a huuuge weight off your shoulders.
@fishchick – Keep up the good work at home and at work. Your charges who aren’t lucky enough to have you as their mother at least get a positive, accepting person in their lives who treats their autism asjust a difference in how they experience the world, and not a disaster that means they’re defective and worthless until they magically become NT.
* http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3510683/
Bad phrasing. 6am and I’ve had an hour of sleep, and what I meant to say that I was a former child, like these kids are now, not a former sick/disabled and non-NT person!
That would require more than magical thinking and realigning my chakras, sticking needles into me, or my mother’s combination of homeopathy and prayer.
@lizditz, thanks for the links! I found the Autistic Self-Advocacy Network piece very interesting. At some point I’ll have to ask my son which he prefers
elburto – I sympathize with your thoughts, but just a point from the other side of the fence. Not all physically healthy NT children are easy to parent. One can have a completely healthy child with no diagnosable “condition” and still be dealing with some pretty extreme and even dangerous behaviors. While I am happy that I took my pediatrician’s reassurances that my daughter was “fine”, at the time, We genuinely needed help parenting my healthy NT daughter.
Following the advice of various books on parenting recommended by our home study social worker and pediatrician failed or even seemed to make things worse. The two family counselors that our pediatrician gave me recommendations for (reluctantly, after warning that many other psychologist/psychiatrist teams in the area just prescribed Ritalin to all their patients) either didn’t return my calls or wouldn’t accept us due to having the wrong insurance. Luckily, between following some preschool discipline techniques and a book I came across by Douglas Riley*, I was able to manage the issues with my daughter, but I had to sort through plenty of useless and outright bad information. It seems to me that people who are struggling with similar issue are just the type who will be taken in by the idea of “Almost Autism”.
*A book called “What Your Explosive Child is Trying to Tell You” which would probably take a lot of criticism from this group on it’s chapter on chemical sensitivities, but a couple of the other chapters genuinely helped us.
@ Elburto: thanks for the link to that fascinating article on Munchausen by internet. Over the years, in the course of arguing with people on-line who insist that their illness was “cured” by some sCAM they are promoting, I have wondered how commonplace it is for people to fake illnesses, then claim to have been cured by some woo or other. Especially all the people who claim to have had “stage 4 cancer,” which was eradicated by high doses of vitamin C/prayer/ coffee enemas/chelation, whatever.
On another site, I have been engaged in a sometimes heated discussion with a couple of people, one of whom insists her schizophrenia was cured by orthomolecular medicine. I believe the putative ex-schizophrenic never had schizophrenia in the first place – her symptoms sound more like a severe anxiety disorder, though I have not said so; I avoid making armchair diagnoses or getting too personal in general. The really interesting part of the discussion is the other participants, who have been virulent in their attacks on me for “silencing” the “lived experiences of a psychiatric survivor.” As I continue to protest that orthomolecular medicine has been found to be ineffective, citing links, protesting that all sorts of schizophrenics have tried vitamin B6 and it hasn’t worked, etc, the response has been a sort of group-think, where they are trying to shame and discredit me into leaving the discussion. Basically, people on-line don’t seem to be as interested in learning something as they are in being a part of a community, however wrong-headed.