Recovered, Diagnosed, Undiagnosed…..
On Sunday I posted about whether or not Jenny Mccarthy’s son is recovered or not.
In a transcript of McCarthy’s June 6 interview about her “autism crusade,” it’s as hard as ever to get the facts straight about what her son Evan has: Perhaps it is indeed not clear to either McCarthy or the various medical and other professionals who have evaluated her son.
Here’s what McCarthy said in answer to questions by guest host Jamie Kolby and by Greta van Susteren:
VAN SUSTEREN: And in the spectrum, where is Evan?
MCCARTHY: Evan was undiagnosed with autism.
VAN SUSTEREN: So if I met Evan?
MCCARTHY: You would never know in a million years.
VAN SUSTEREN: So how does it manifest itself?
MCCARTHY: Autism?
VAN SUSTEREN: No, Evan’s autism.
MCCARTHY: It doesn’t.
VAN SUSTEREN: I wouldn’t know Evan is autistic?
MCCARTHY: No, when I take him to neurologists - this is another - there’s like two controversies with autism. It’s how they got there and the possibility of recovery. Recovery, the real thing, it’s not a cure, a really great analogy I give is autism is like getting hit by a bus. You can’t be cured but you can recover all those lost things that you once had. [Other examples of the “autism is like a car accident” are here and here.]
VAN SUSTEREN: Relearn the skills?
MCCARTHY: Relearn but also you might have a booboo here and there but Evan, once I looked into how this generation of moms have been healing lots of their kids, there’s thousands and thousands of recovery stories. I follow those people and the reason why the medical community doesn’t support is because us moms aren’t treating autism, we are treating a vaccine injury. And when you treat the vaccine injury, the autism goes away, minimizes or disappears. When Evan goes to a neurologist now because he still has seizures, the main thing they keep saying to me is he never had autism to begin with. He never had autism. [Compare this post, So is this autism?.]
Well, really, he was diagnosed by UCLA and the California state where he had in home therapy for 40 hours a week for an entire year. You’re damn right this kid had autism. This kid had no language, two to three words, and now he’s completely conversational because I detoxed his body, I did the diet, all the things the medical community doesn’t support. [So autism is “no language” and nor being “conversational”?]
Emphases are mine.
Tags: abc, asd, asperger, autism, berkeley, California, celebrities, celebrity blog, children, Genetics, green, Health, jenny mccarthy, jim carrey, mercury, mtv, New Jersey, Parenting, pdd-nos, rally, Science, tv, vaccine, washington dc
66 opinions for Recovered, Diagnosed, Undiagnosed…..
Rebecca
Jun 11, 2008 at 1:17 pm
Ugh!!! I can’t even think about that conversation without cringing.
I don’t follow much celebrity stuff, but it seems to me we need a new celeb to talk about autism. A real person, not a blow up doll with air for brains. She makes us blondes look bad!
Someone like Brooke Shields; she was so real and honest when talking about her post partum depression. We need that with autism. How can Jenny speak for us, she can’t even clearly express her son’s diagnosis.
lastcrazyhorn
Jun 11, 2008 at 1:23 pm
GRR. She really really really annoys me. I think she even annoys me more than Dubya, and let me tell you . . . that’s saying something.
Synesthesia
Jun 11, 2008 at 1:32 pm
She kind of annoys me for some reason. I’m with lastcrazyhorn, but I think Pres. Bush annoys me more.
farmwifetwo
Jun 11, 2008 at 1:33 pm
Why is McCarthy crusading against vaccines that cause autism.. if her kid never had autism (eye roll)…
As one who could write a cured book about my eldest (using Seroussi’s and McCarthy’s criteria)…. just wait until they have trouble at school…. socially, academically (abstract ideas) etc. Autism is not something one cures or recovers from… it’s always there.
I feel sorry for the boy most of all.
Emily
Jun 11, 2008 at 1:39 pm
She’s seriously confused. I also wish there were a more articulate, better educated, less shallow celebrity spokesperson–elected or not–for autism.
One point I’d like to make here is this: I’ve *never* had a medical health professional–MD, therapists, any of them, even neurologists–tell me that biomed doesn’t work. Never. And I’ve asked. I’ve even had two pediatricians and a neurologist *recommend* biomed, and we tried several approaches; they simply didn’t do much in our case. So I think, from my own experience in two different states with several different medical professionals across a swath of fields that this idea of DOCTORS being against MOTHERS is bullshit. If your doctor won’t listen to you and talk honestly with you about these things, encourage you in them, get a new freaking doctor. But don’t paint them all with the same brush. It’s yet another false dichotomy, in my opinion. Another way to make it look like these folks are taking a stand against The Man.
Emily
Jun 11, 2008 at 1:41 pm
I’d also like to add that I know personally many many MDs, and I can’t think of a single one who would come out emphatically against a biomed approach unless it were something inherently harmful or dangerous, like chelation.
toxic
Jun 11, 2008 at 1:46 pm
You can\’t have it both way Kristina. Are the doctors better at diagnosing or not?
She said UCLA and the state of CA diagnosed her son as autistic. Are you saying they were wrong?
Jen
Jun 11, 2008 at 1:54 pm
I agree with Emily- at our last developmental pediatrician check-in, I asked about the biomedical interventions, specifically the GFCF diet. (We had switched our son off of dairy products just after diagnosis because a) he was a big milk drinker and b) had always had irregular bowel movements, and diaper rashes, and I thought there might be a connection.) Our doctor said that he thought that there was definitely a connection between the gut and the brain and that many of his patients had said that they saw behavioral improvements in their children after changing the diet (which we had seen as well). However, he also said that it doesn’t “cure” the child, it just modifies their behavior. As for Ms. McCarthy, I get the impression that she’s a bit confused…
Kristina Chew, PhD
Jun 11, 2008 at 1:59 pm
In her book, she conveys herself as being quite confused.
Club 166
Jun 11, 2008 at 2:05 pm
Thanks for going to the transcript for this. I was confused when I heard this live. Now it’s clear to me. It wasn’t my ears, after all. :)
Joe
Synesthesia
Jun 11, 2008 at 2:29 pm
I have yet to read that book. I think it might irratate me. I saw her on Oprah and was a bit frustrated.
Chuck
Jun 11, 2008 at 2:38 pm
“DOCTORS being against MOTHERS is bullshit”
Three different neurologists blamed my NT child’s migraines DIRECTLY TO my ASD child. The last one was so completely inept he tried to convince us to crank up narcotic drugs to “relieve” the problem. We had to specifically search for a qualified doctor WITH an ASD child to give us the only PROFESSIONAL qualified treatments that didn’t use “blame” or narcotics to solve the problem.
So I find your opinion to be bullshit.
M
Jun 11, 2008 at 2:41 pm
“Emphases are mine.”
The stupidity: all hers.
Probably what’s happening is that she’s remaining vague in an effort to protect the possibility of future books. She’ll be able to keep shifting the way she refers it, and add in whatever the cause-of-the-week is, or any other alarmist trends she likes. David Kirby is making a career out of verbal shell games like this.
It would require intelligence, cunnning, foresight. She is first and foremost a business woman, so I can see it happening. I mean, if her kid is “cured”…what else is there to write about? Ambiguity ensues.
Cliff
Jun 11, 2008 at 2:41 pm
Well, at least there’s one consistent thing; she never seems to actually make all that much sense.
Cliff
Synesthesia
Jun 11, 2008 at 2:43 pm
Some doctors can be like that, others more understanding.
When I had cancer in my left hand, one doctor wanted to cut my left arm off. My mother fought against that and took me to a doctor who removed the tumor and some other parts of my hand, put a patch of skin on it and gave me chemo. I’m alive as a result.
It’s always good to question doctors, even if they are the “Experts”. Doctors do not know everything, but in the case of Jenny M, I can’t be sure.
farmwifetwo
Jun 11, 2008 at 2:49 pm
“I’d also like to add that I know personally many many MDs, and I can’t think of a single one who would come out emphatically against a biomed approach unless it were something inherently harmful or dangerous, like chelation”
Emily - our first Dev Ped was a year or so from retirement and “old school”.. still stuck back a DSM or 2 in time.
When I asked about the nightmares/terrors (daily), the diahhrea (daily), the vicious rashes (daily), I got told “Some children with autism are like that”.
If he’d been “normal” they would have told me to start pulling foods. It’s dairy… 48hrs later all of the above were gone. 7days later we put a tiny pad of butter on a freezer pancake and the kid went “ballistic” for 24hrs. It was HORRIBLE. The screaming, the headslamming, the nightmares/terrors, diahhrea… Unbelievable. 6yrs later… I’m still too scared to try dairy again.
It still happens here. http://www.cbc.ca/health/story/2007/09/27/autism-study.html Even though the institution that did this study…. is in the same city as where these Dev Ped’s work.
Now saying that, removing dairy etc did NOTHING for my severe, non-verbal PDD son. But he’s not stoned nor does he have stomach/sleeping issues.
S
Thomas
Jun 11, 2008 at 3:04 pm
@Emily - You are so fortunate. The number of Dr.s therapists etc. that told us biomeds would work can be counted on one hand. I have NEVER had anyone in the mainstream medical profession encourage the use of biomeds, special diets, or anything like that for our daughter. And most of the developmental peds we’ve seen have their own special pet therapies they swear by over any other to the point they rejected anything else.
Emily
Jun 11, 2008 at 3:11 pm
And that’s why I say, if a doctor is dismissive or “too old school” or unaware of what’s going on in his/her field…time to get a new doctor. Fire ‘em and move on. I realize that dev peds aren’t just rolling down the street in droves, but…time to live without a dev ped.
I’m very picky about the doctors we choose for our family. I research them beforehand and ask around about them before we even see them. If I get a bad vibe at our first appointment–which I consider to be a job interview–we move on. That’s likely why I’ve never had a doc who’s been dismissive of biomed options, and likely why I’ve even had a few who’ve not only recommended them but kind of pushed them on me.
Chuck, you may find my opinion to be “bullshit,” and my own experience with neurologists in general is not positive. I don’t really care for them as a group, which is more general in condemnation than I usually like to be, but…that’s neurology for you. As I’ve described, if you don’t like the doctor, fire the doctor; I’ve personally fired three neurologists, but two didn’t have anything to do with my children. If I don’t like them, I don’t go to them. I’ll drive several hours to go to the doctor who is a fit for us.
But I don’t believe in this “war between doctors and parents” mentality, at all. It’s not a war, it’s about finding a fit. Some people just like their doctors to tell them what to do, and they just do it, no questions asked. Some people like to dig deeper and have a doctor who grabs a shovel to dig, too. If you don’t want a battle, don’t want a war, find a doctor who’s on your side. Or, you can get all pissy about it, hold major grudges against an entire profession based on bad experiences with two or three of them, and call it a war. I still call it bullshit.
Emily
Jun 11, 2008 at 3:14 pm
Thomas, I’ve run into plenty of practitioners who have pet therapies and theories, including a lot of OTs and SLPs, whose particular pets were pet peeves of my own. As I’ve said, short of an emergency, I choose my healthcare providers based on fit. It’s not luck, it’s simply what I will or will not tolerate. Thus, the ones we go with are open to ideas and discussion and are–possibly as important–*aware* of what is out there that’s not part of the algorithm or “gold standard” of treatment.
We’ve had a mixed bag with dev peds. Had a great one in CA, the one who dx’d our oldest son. Just had one here who was…a bit too “by the book” and too “old school,” and we won’t be seeing her again. I don’t go to doctors who can’t think laterally. I just don’t.
Emily
Jun 11, 2008 at 3:18 pm
Got one more thing to say: You can’t fight a war without two sides. Unless you live in a very tiny town far far from any large cities, it’s your choice: to have a war, to have a doctor you feel like you have to fight all the time, or to have a doctor who works *with* you. So, you can be a martyr to your MD, or you can be a partner with your MD. I don’t care how many doctors I have to fire, I’ll do it (and have done it) until I find one who clicks with us.
ange
Jun 11, 2008 at 3:33 pm
All I hear is the twighlight zone music playing when she speaks.
I struggle so much with the narrow focus on cause and cure. I think I’ve said it here before that my oldest son has structural brain differences. And he meets the DSM criteria for an autism spectrum disorder. I’ve been told he doesn’t have autism because he has these structural differences. I’ve also been told that autism effects him more than the structural differences. I’ve heard he should function as someone who had a stroke. I’ve heard lots of things by lots of reputable doctors. You can call it whatever you want, but his brain is different. And nothing is going to make it typical. He thinks differently, processes differently, reacts differently… and I am not going to spend all of my energy trying to make him “look” and “act” normal to “fit in”. I’m going to spend my energy helping him work with what he has to get the life he wants and help society get over itself. :P
Patrick
Jun 11, 2008 at 3:33 pm
“…there’s like two controversies with autism.” How shallow minded, lets see, cure vs no cure, vax vs antivax, Sped vs Mainstream, Toxicity or Genetics or both. (Note: My Incomplete list)
Wow, JMac doesn’t even get out of the starting gate without making some stupendously ignorant statements, in my opinion.
farmwifetwo
Jun 11, 2008 at 3:58 pm
“Got one more thing to say: You can’t fight a war without two sides. Unless you live in a very tiny town far far from any large cities, it’s your choice: to have a war, to have a doctor you feel like you have to fight all the time, or to have a doctor who works *with* you. So, you can be a martyr to your MD, or you can be a partner with your MD. I don’t care how many doctors I have to fire, I’ll do it (and have done it) until I find one who clicks with ”
Can I just type… “what Emily said” :)
If nothing else it’s kept life entertaining and stressful at the same time b/c it isn’t just the Dr’s, we’ve had issues with Therapists (ABA!!!!)we had to get rid of as well.
I’m happy now, I think we have the best team we could have in place for the boys. Although my blood pressure (no joke) - didn’t need the work out getting there :)
S.
Linda
Jun 11, 2008 at 4:11 pm
Greta asked great questions and didn’t take, “duh” for an answer!
Jennifer
Jun 11, 2008 at 4:36 pm
My six year old is extremely conversational, very social and most people don’t know he has autism. He HAS a DX, got it at three and at two had no words. He has improved just because he’s improved. We didn’t do ABA, we didn’t do biomed, etc. We did OT, lots of socialization and accepted him for who he was. By their standards he is “cured” but he’s always going to have challenges that have to do with being on the spectrum. If biomed can really “cure” everyone then how come some kids remain non verbal and classically autistic despite ABA and Biomed? Kids improve because they do. Her son would have improved without the biomed stuff too I’m sure. Some just do, and some just don’t. Why is the big question.
sam
Jun 11, 2008 at 5:09 pm
“look me in the eye” author…he had AS…then cured himself…i think there was a chapter called “becoming normal” or something like that, where he thinks his way out of the condition.
but now…apparently just to be on the safe side… he’s using magnets to continue the autism recovery. magic magnets or something. this is all described in detail on his bloggy. they strap the magnets onto his brilliant noggin’ and drain away the AS (which, again, he had supposedly recovered from years ago). i may try fridge magnets later today, see what happens.
Regan
Jun 11, 2008 at 5:18 pm
What’s the newsflash? That some physicians are a better fit for a family than others? That some doctors are on the “jerkish” side, and some aren’t? That pretty much cuts across the species.
I’ve not been lucky with my own physician, but maybe I’m looking for trouble myself :-), but we have been with the same garden variety pediatrician for almost 20 years. She has gone above and beyond for the girls many times.
When we got the diagnosis for Eleanor, we cried, and she cried with us and stayed in the office to talk about what we would do next until long after everyone in the building had gone home. She calls just to see how both the girls are doing. Although Eleanor was her first and, for awhile, only patient with autism, by the next visit she had studied alot and already anticipated things like scheduling an appointment when the office was quiet, had the shortest wait, etc. and had a list of area and state specialists ready. She did every test we asked for and suggested a few that we didn’t know about.
Whether she may be the most cutting edge physician on the planet or not, I will never forget that kindness and care.
Albert
Jun 11, 2008 at 5:27 pm
I cannot find the Larry King clip, but the first time she was on his show, I’m pretty sure she defined autism as “A bacterial, fungal, and viral infection exacerbated by vaccines.” Now Maybe I am wrong, but I think this is what she said. If there is a URL for the interview perhaps someone could send it in a comment. If she did say that, as I recall, it’s not just confused: it’s 100% wrong.
Regan
Jun 11, 2008 at 5:34 pm
I’m glad Evan is making progress–that’s the most important thing.
That said, it is a little muddy as to what his status was and is, what caused it or not, and , and what was responsible or not for the improvement.
If JMc wasn’t the current acting “voice” of the autism “community”, I wouldn’t care what she believes wth mommy radar. Since she is, she carries alot of responsibility along with the attention.
Kristina Chew, PhD
Jun 11, 2008 at 5:46 pm
Ditto that last paragraph Regan.
Everyone’s glad to hear about the progress McCarthy’s son has made. Her book opens with him having his first seizures and there’s some fairly intense scenes—-the autism diagnosis comes later and then it all gets a bit more vague. The transcript cited in this post and the numerous interviews etc. that she’s said are only muddying things into, well, a bit of a stew.
Our pediatrician at the time of Charlie’s diagnosis was incredibly kindly and supportive. I had just learned about DAN! etc. and gave it to him and he was non-judgmental (in retrospect, I have to shake my head at myself). Often I’ve wished we could see him again and let him know, it has turned out ok.
sharon
Jun 11, 2008 at 6:19 pm
Has she ever been tested for having a brain? She makes no sense what so ever.
Jeni Hill Ertmer
Jun 11, 2008 at 7:39 pm
I read this post and at the end, just sat here and shook my head. Not sure if it was due to confusion or amazement at some of JMc’s comments. What the heck is “undiagnosed autism” anyway? That’s a really new terminology for me.
I’m far from an expert on this topic -having just been deposited in autismland about 3 1/2 years ago when my now 4 1/2 year old granddaughter was initially diagnosed with developmental delays and then, two years later evaluated and diagnosed as PDD-NOS, high functioning. Her two-year-old brother was diagnosed this past March with full Autism. The only analogy I would offer, with respect to other medical type issues to autism would perhaps be diabetes. You get it, you deal with it but not cured -or possibly too, alcoholism. No cure for that either once it sets it but it has different roots as a cause too.
I agree fully with Regan’s comments that if she is being heralded as the spokesperson for autism, then she needs to learn one hell of a lot more about the disorder before going out and tooting her little horn. Does more damage than good with her parroting all her ideas, particularly on the vaccine issues.
Thanks Kristina for having a great, straight-forward symposium on the many sides autism presents in our children.
pickel
Jun 11, 2008 at 9:45 pm
I am still astounded at how vague she is and how much the public believes everything she says. And, is it really possible for a child to be undiagnosed with autism? I thought that if you have it you have it…
Marla
Jun 11, 2008 at 10:03 pm
Sigh. and Sigh. again. My daughter’s diagnosis has changed many times too. Mainly where her seizures are concerned. Is she certain her child is really having seizures? Hmmmmm….it is possible for a child to be misdiagnosed many times over, even by the best hospitals. We have been there and done that.
What she says makes little sense. The car crash stuff? What the heck? I read it three times and it still seems like gibberish.
Shawn3k
Jun 11, 2008 at 10:45 pm
I think of Blue Collar Comedy tour comedian, Ron White’s comment “You can’t fix stupid…” when I read her words.
I disagree with comparing her to the President…he might be a hick, but he’s no Jenny McCarthy. She is the gold medal winner of ignorance in this contest. Hi…my name is Shawn and I’m a conservative…but I’m still a nice/good person.
To think that some may view her as the public face of a parent with an Autistic child makes me cringe. Talk about two steps back…
Kristina Chew, PhD
Jun 11, 2008 at 11:07 pm
One thing about Charlie: There’s never been a change in his diagnosis.
Here’s the Larry King interview transcript——the big thing that McCarthy kept bringing up then was candida and anti-fungals—-no word of those now.
Chuck
Jun 11, 2008 at 11:13 pm
Emily,
I have taken a step back and took a deep breath because this is a VERY raw nerve.
What scientific study has proven that ASD siblings cause migraines?
BIGOTY and STUPIDITY (BS)
That is all I have to say.
We had to go out of network and out of state to get away from the BS!
albert
Jun 11, 2008 at 11:17 pm
sorry — i didn’t get it right. here is what she said:
KING: What is autism?
MCCARTHY: Wow! Well, it differs for a lot of people. But — or opinions. But I believe that’s — it’s an infection and/or toxins and/or funguses on top of vaccines that push children into this neurological downslide which we call autism.
dura mater
Jun 12, 2008 at 12:09 am
two things:
1) maybe jenny McC’s son is “non-conversational” because she is. . . ;~)
2)@ Emily. I totally agree w/you about the relationship with the doctor. If you are uncomfortable with him/her, if there is bad chemistry between you, the relationship is unlikely to be therapeutic. People should not stick with a doctor with whom they can’t partner. And people shouldn’t worry about hurting the doctor’s feelings or anything if they fire him/her; she/he will get over it. Chances are, if you have a bad feeling about the relationship, the doc does too. And remember, doctors don’t automatically love everyone who comes into their office, either, so it works both ways.
BTW, I am a neurologist.
Kristina Chew, PhD
Jun 12, 2008 at 12:29 am
@Marla, regarding the car crash stuff—in the Larry King interview, she said
@dura mater,
we communicate so well with Charlie’s pediatric neurologist that we drive to Pennsylvania to see him.
Synesthesia
Jun 12, 2008 at 10:25 am
John Elder Robinson didn’t cure his autism.
He somehow rewired his brain by becoming more outgoing.
As a result though, he lost his ability to make circuts, which is extremely interesting.
Why is it that some people who have difficulty communicating have extrordinary abilities in art and other things, but lose them as they become more outgoing?
He said that the TMS is designed to slow down the overactive parts of an autistic person’s brain, not cure autism.
See? http://www.amazon.com/gp/blog/A1MXK80QDGM1GJ/ref=cm_blog_dp_artist_blog
Emily
Jun 12, 2008 at 10:45 am
Chuck, I’m so sorry to have hit such a nerve. I do that a lot, unintentionally. I have had to go far afield for neurologists because my experience with that particular breed of doctors in general has been quite negative. In fact, I cannot stand them. So, I sympathize and empathize with you. They are probably the worst kind of specialty to deal with for a couple of reasons. (1) They think they know more than they know because (2) we honestly don’t know that much about neurology yet. My experience is that they see a couple of things among a suite of manifestations, latch onto those things and then stick to their diagnostic guns, regardless of what else arises to redirect the diagnosis. They drive me crazy. That’s why I’ve fired three of them and try to stay away from them in general, even though I have a neurological disorder. Our sons received their diagnoses from dev peds (with one exception) because I just don’t DO neurologists if I can help it.
Sorry again for inadvertently touching that nerve. My bad.
Emily
Jun 12, 2008 at 10:53 am
Dura mater, I figured you were a neurologist (either that, or you just have a thing for brain membranes), and I’m sorry for generalizing about your specialty. I’ve had a series of poor experiences with neurologists lately–one of whom decided that I had somatization for my upper extremities but something genuine for my lower extremities because he wanted it to fit his idea of the etiology of my problem (he wanted it to be t-spine, essentially, rather than brain). The neuro I had prior to that drylabbed her report on me, which ticked me to no end. I have a neuro now whom I like OK…at least he’s open and direct and doesn’t drylab or decide that I have conversion disorder…he’s also a bit old school, but I’m going to sit with it for now. Anyway, I realize there are some great neuros out there, but my experience (and apparently Chuck and Marla’s experiences, as well) has been that they are difficult to find.
Ped neuros are especially difficult where I am. My youngest son has a Chiari 1 malformation that is “borderline,” according to the literature. He has a drag foot, unilateral hyperreflexia, motor delay, retained reflexes, and some other things, but the ped neuro completely dismissed any relevance of the Chiari to these clinical manifestations. So, we dismissed that ped neuro. Unfortunately, his group is the only group in town, so we have to go three hours away to see another one.
/rant.
Sorry.
sam
Jun 12, 2008 at 10:57 am
“See?”
I’ve seen. It’s laughable. His “improvement”, with the magnets, was almost instantaneous. This is nonsense.
Did you read the memoir? He has a serious messiah complex. It was predictable that he would seek a miracle cure and then offer himself up as the Shining Light of Hope.
He does deny wanting a cure, but I’m judging him based on his actions, not his frequently contradictory words. “Nope. Don’t want a cure. I will, however, stap a magnet to my head and suddenly be able to make eye contact and feel socially outgoing”.
And again, there was a chapter entitled “Becoming Normal”…where he, as you put it, “somehow rewired his brain”.
In other words: the chapter was not entitled “accepting myself” or “making slight improvements”. Normalcy is what he sought. Sounds sort of like he wanted a cure.
Chuck
Jun 12, 2008 at 12:36 pm
“Sorry again for inadvertently touching that nerve. My bad.”
No, I just need to learn to spend a few days in the gym ( I Wish) and work it off.
Kristina Chew, PhD
Jun 12, 2008 at 12:40 pm
The ped neurologist has become the most important doctor for us—-we thought we’d find a new one when he moved to Pennsylvania, but after some very unpleasant experiences we decided that the 2 hour ride was “nothing to it.” The neuro has a touch of ADD and two children with “issues” and he really listens to us.
@sam, I’ve read Look Me in the Eye and heard about those magnets. Interesting about the “cure” and “normalcy” talk—-in the earlier parts of the book, he seems to rather relish doing a lot of “crazy” things; to be different.
sam
Jun 12, 2008 at 12:46 pm
“he seems to rather relish doing a lot of “crazy” things; to be different.”
Definitely. I think it’s part of his messiah complex: needing to be all things to all people. Some days, the misfit label is what he pushes. Other days, he’s either thinking his way into normalcy, or letting magnets do the job. It’s good shtick.
Synesthesia
Jun 12, 2008 at 2:26 pm
Perhaps.
His perspective is interesting though.
Too bad he’s bogged down by the concept of normal
Which is not real.
sam
Jun 12, 2008 at 4:55 pm
“His perspective is interesting though.”
You’re right. I’m being negative, but he does have a unique story, perspective. The question you asked: why is it that gaining some skills erodes others…is an extremely interesting one. I’m curious to hear about other savants, what sorts of changes they’ve experienced as a result of social skills building.
UNCDoc
Jun 12, 2008 at 5:05 pm
There are a lot of lousy docs out there, particularly with regard to bedside manner. On the other hand, there are a lot of lousy patients (and parents of patients) who come into the visit with such a chip on their shoulder that they are likely to misinterpret anything you say as offensive or combative.
People are people, but lots of folks (probably some posting here) need to look in the mirror if they want to find the reason for their bad experiences with the medical world.
My patients are all babies, so it is not as much an issue with me. Fortunately as a subspecialist I don’t have to worry about quite as many parents who know everything as a general pediatrician or practitioner would have to. I also am very comfortable with admitting to families when I don’t know the answer to something, and I have never had anyone react negatively to that.
It’s a trust relationship. If you don’t trust your MD, then you certainly have the right to go elsewhere. Maybe you can find some chelator to do your surgery. (Sorry, a little snide, but I couldn’t resist).
Emily
Jun 12, 2008 at 6:57 pm
UNCDoc, I’m sorry, but I have to disagree about the experience of people I know. They’re TOO shy, too worried that the doctor will think poorly of them, and it keeps them from standing up for themselves and really ensuring that the MD listens to them.
For me, MDs are colleagues, so I don’t feel like I have an antagonistic relationship with them. I’ve never even engaged in anything remotely antagonistic with the ones I’ve ditched because I did the dumping *after* seeing their notes, sent to me by medical records via US Mail. It was kind of a silent firing in every case. I simply canceled the follow-ups and requested second opinion referrals from the ped or our family practitioner.
But I know scores of people who come away from their experience with a doctor feeling as though they’ve been stomped on. These aren’t people going in and demanding biomed or demanding anything; they just want someone to *really* listen to what they’re saying, to not give them the brushoff, to try, genuinely, to figure out what’s going on with them. They go in, worried about genuine symptoms, and run into arrogant assholes who can barely give them a complete neuro exam. Some are little old ladies who think doctors are god and are scared sh*tless, and some are young people who really are frightened at the prospect of facing decades of a debilitating neurological illness. I can’t even count the number of people I know now who have gone to neuros with sx indicative of MS and had the neuro say, “Well, I’ll send you for an MRI, but there won’t be anything. This is probably just stress.” Can anything be more dismissive than that? How can any MD know that there won’t be something on an imaging study BEFORE the study? It’s the opposite of good scientific practice, that presumption. The irony is that in every case, the MRI *was* positive for lesions.
UNC Doc
Jun 12, 2008 at 8:33 pm
That’s a mighty fine anecdote with which to paint such a broad brush. But hey, there’s certainly comfort in victimhood. Out.
CS
Jun 12, 2008 at 9:24 pm
UNC Doc,
I’m also a UNC grad. Perhaps we have met? I’ve certainly banked a lot of UNC docs. Some are good, and some are bad. Some are green+$ and some are red-$. I’ve found the green+$ ones are bad and the red-$ are good. Does this make cents?
Kristina Chew, PhD
Jun 12, 2008 at 10:34 pm
A recent post by Orac on practicing science-based surgery seems relevant…….
Emily
Jun 12, 2008 at 11:59 pm
“That’s a mighty fine anecdote with which to paint such a broad brush. But hey, there’s certainly comfort in victimhood. Out.”
Oh, I see. You’re one of those. I’m not casting myself as a victim, Dr. Jackass. I’m describing stories I’ve heard from many other people; it’s not “one” anecdote, it’s many, it’s a trend, it’s in the double digits, and I’m just one person. I’m sure the stories are Legion. Interesting that you dismiss these *people* and what they go through–the stress, the accusations of conversion disorder, the dismissive attitude of the people they turn to for care, only to find in the end that they have a genuine, debilitating neurological illness–as “anecdotes.” Just as the plural of anecodote is not data, people are not anecdotes.
Sorry if it hits you where it hurts. I don’t consider it unequivocal evidence of anything, but all you need to do is look around. It’s all the buzz in your profession, you know, how poorly patients feel they’re being treated. You are no exemplar, if what you’ve just posted here is any indication. Getting a doctoral degree doesn’t make you God. It just makes you educated. And education doesn’t make you unassailable and it doesn’t make you right all the time.
I see in your dismissive attitude about legitimate concerns I describe on behalf of other people exactly what those people themselves have described. You didn’t like it when I respectfully and sincerely disagreed with you (made the mistake of thinking we were engaging in a dialogue there, rather than in a smart-ass one-off; by the way, that’s what MY avocational doctoral degree is in), providing you with examples of the perception from the other end of the stethescope. I had this nutty idea that you might give a shit what the patient’s perception might be. Oops.
Guess I can add you to the file. It’s unfortunate that you work with the pediatric population. Are you “out” when you completely misunderstand something one of them says to you, too? Been years since you engaged in any active reading comprehension, I take it.
I don’t consider myself a victim when it comes to doctors. Not by a long shot. I do consider it actionable malpractice, however, when one drylabs my reports.
Kristina Chew, PhD
Jun 13, 2008 at 12:23 am
I think some of what’s being discussed here suggests why (some) parents turn to alternative/DAN! type “doctors” and practitioners—–some seem to offer a more “personalized” approach, to “listen” and “feel your pain” (well, that was what the DAN! nutritionist who we saw was like).
Kathy
Jun 13, 2008 at 12:30 am
And… Emily scores a slam dunk!
(Sorry guys, I couldn’t resist.)
UNCDoc
Jun 13, 2008 at 5:19 am
To question my work with the pediatric population is laughable. Clearly you don’t know me nor have had any experience with me at the bedside. It is clear that you you have a gigantic chip on your shoulder (not to mention a foul mouth), and I am not going to continue to engage in conversation with someone so clearly filled with hatred and hypersensitivity.
This is why message boards are often so foolish — I guess I’ve learned my lesson. If you are in NC sometime, I would suggest a couple therapists for you….
The End.
Emily
Jun 13, 2008 at 9:48 am
That’s a foul keyboard, bub. Not mouth.
Of course, I don’t have experience with you and don’t know you. All I know is what you’ve presented here in reply to a couple of posts I’ve made on this comment thread. That’s how you present yourself. That’s how you come across. It doesn’t mean that I need a therapist, but your casual reference to that again illustrates exactly the point I’ve been making about dismissive doctors.
I do have chips on my shoulder, but they don’t relate to doctors. I do clinical and basic research. I have a PhD in biomedical sciences. My friends and colleagues are MDs. Three of my childrens godparents are MDs. And these folks discuss this kind of thing with me without getting hyperdefensive about it. I can mention it to them without getting their MD feathers ruffled. Perhaps that is because I chose my MD friends and colleagues as well as I choose my MDs for personal healthcare. And this difference in their response vs yours appears to highlight your attitude, and that light’s not flattering.
If you ever visit any of my colleagues at UCSF, let me know. I’ll be sure to warn them.
FYI: You really do seem to have a chip on your shoulder about patients. You don’t necessarily need a therapist, but can you find a good CME re: patient-doctor interactions? You need it. And you do come across as “filled” with disgust for patient populations in general, and you appear to have a hair-trigger response to the mildest criticism, so your accusations that I’m hypersensitive (I am, sometimes, about some things) or that I’m “hate filled” (I’m not, at all, and funny you take issue with my Anglo-Saxonisms but feel that it’s OK to call me that) are a simple matter of seeing your own reflection in what I write here.
Emily
Jun 13, 2008 at 9:53 am
By the way, you’re not “engaging in a conversation here,” you’re engaging in some kind of overbearance competition, and you’re obviously used to having the doctoral last word in everything you do, hence these little “out” and “the end” codas to your posts. This isn’t a stage play. You don’t have to exit stage left when you’re finished, Drama Queen.
warren
Jun 13, 2008 at 11:25 am
I think UNCDoc needs a “voice of authority” emoticon. Something like a smiley, only more serious. Scary, even. Something that means “you can’t question me any further”. For I am more important and smarter and stronger than you and don’t even have to marshall an argument for my position, because you are too puny and weak to deserve one.
Warren
[Aspie in Toronto]
Regan
Jun 13, 2008 at 5:31 pm
Maybe it’s just me, but the sally in this thread might be a nutshell version of some of the issues.
As far as that listening to people thing that Kristina alluded to, I went to a DAN presentation once and the guy there was definitely “hearing your pain”. For some reason it did not make much of an impression on me; I don’t know why.
Kathy
Jun 13, 2008 at 7:20 pm
Interestingly Emily, I have just begun reading “a friend like henry” by Nuala Gardner.In it she mentions how difficult it was to get a diagnosis of autism for her son Dale.
Many ped’s psych’s and MD’s were dismissive of her and her concerns. Some even blamed Nuala and her husband for Dale’s behaviour.Not one was listening to Nuala, herself a professional.
Even the “refrigerator mother” theory was bandied about by one doctor!
The common thread here, appeared to be lack of understanding and empathy, on the part of the doctors’, with pre conceived notions that resulted in closed minds from these so-called professionals.
In short they completely disregarded(the experiences and opinions of) and mis-read the mother and her motives.(There was also an inference of munchausen syndrome)
Nuala Says:
“Finally with Dale aged 3 years and 11 months, after 16 months,and appointments with thirteen different professionals, a diagnosis was made: Dale had classical autism:”
What that poor woman endured. Her grit and determination to help her son knew no bounds, she was on the brink of despair, until finally she found a voice of reason in Professor Newson at a child development centre. She was an “autism expert.”
Finally Dale and his family would get the help that was so desperately needed!
Indeed, Emily, the old saying “It pays to shop around” certainly rings true.
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