Recovered, Diagnosed, Undiagnosed…..
June 11, 2008 by Kristina Chew, PhD
Filed under Health
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.
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.
That’s a mighty fine anecdote with which to paint such a broad brush. But hey, there’s certainly comfort in victimhood. Out.
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?
A recent post by Orac on practicing science-based surgery seems relevant…….
“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.
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).
And… Emily scores a slam dunk!
(Sorry guys, I couldn’t resist.)
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.
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.
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.
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]
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.
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.