New Study: High Autism Rates Due To Over-Diagnosis

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Editing this entire response as I read the above incorrectly!

That is a good question, who, specifically, decided these were "false" positives? Were they psychs/neuropsychs? In my experience, a psych or neuropsych DX was/is absolutely required to DX our one son (and to rule out a DX for our other son), NO pediatrician's or PCP's DX would have been accepted by my sons' schools in order to receive services. And I'd bet my bottom number such "DXs" wouldn't be adequate for an adult receiving services, financial aid, etc. either. My son and every other autistic child I've ever known or even heard of had to be officially DXd by a specific set of specialists and with very specific diagnostic criteria - so, for example, they couldn't "give" an autism DX just based on one standard-length doctor's visit, or by the doctor simply observing and asking the child a few questions or asking the parent a few questions about the child's behavior and performance, etc. - so I would assume an accurate "removal" of DX should require the same, so is that what happened in the study? Anybody know? I can't find the study.

Some things anyone can diagnosis such as a bed bug bite, or a sunburn. However there are some medical conditions that only certain medical doctors can diagnosis there is a reason for that with training and skill.

Just because you can diagnosis a sunburn doesn't mean you have the ability to diagnosis cancer.

I agree with this specifically (sunburn v. cancer) but many, many, many of us OTS AND many non-OTS parents with kids OTS have done, and continue to do, serious, intensive research, sometimes for years, and probably have a better understanding of what may be ASD than if we were simply saying, "hmm, I've read the DSM-V and checked off the marks," KWIM?

Also, DXing cancer is a physical thing that naturally, we at home can't do. We don't have biopsy and MRI equipment, a lab, and so on. Autism is more based on behaviors which are observable (in very specific ways) by laypeople, particularly laypeople who have really done their homework and are going off not only the DSM-V but actual peer-reviewed studies of all kinds (v., for example, just going on forums and saying, "My kid does X, what do you think?" or "I always had trouble making friends, am I OTS?" - many parents and many self-DXers will in fact do that for support, but that doesn't mean that's all they're doing).

Last edited by NowhereWoman on 25 Oct 2015, 1:09 pm, edited 2 times in total.

Even if she is diagnosed, how do you "know." Experts with all the credentials to do diagnosis still disagree over a lot of patients. It could depend on if she's having a good day or a bad day, or if she'd decided she wants the diagnosis, or is determined to "play normal" for the doctor, or the doctor's training or personal biases.

This kind of argument can quickly spiral into an epistemological wormhole.

Maybe we should start questioning the diagnosed people here about whether they got a "real" diagnosis. Or maybe we should just relax and realize that this is the kind of infighting that the antivaxer/aspies-are-all-shooters/soap-causes-autism/cure-austism-with-beating crowds would love for us to waste our energy on.

This. I mean if we're going to nit-pick why don't we require anyone who wants to say on this forum that s/he is "actually" autistic that s/he produce the credentials of the doctor(s) who did the assessment, when it was done (i.e. was it before or after the most recent DSM and the changes, hence, the prior criteria may not qualify?), how the assessment was done, strongly question and demand confirmation that the person wasn't "exaggerating" his/her symptoms and behaviors in an effort to support a DX because that's what the person thinks is going on and s/he really wants the DX, etc.?

Doctors can be wrong too.

So if we're going to go there...we're not going to be accepting of ANYBODY who has or doesn't have an official DX...in which case we have zero understanding or acceptance of each other at all.

I'm not discounting physician DX or anything, nor am I saying just any old person can run his/her finger down the DSM criteria list and automatically give a self-DX, but this is a very good point, or I feel it is.

There is a reason why a medical doctor does not treat, diagnosis one spouse. http://thechart.blogs.cnn.com/2012/01/0 ... y-members/ Those we are close to us we see in a different light sometimes we cannot be completely objective when it comes to what we see and do not see with our own family members and friends.

To me self diagnosing or a person without the medical training diagnosing is no different from the 'anti vaccine moms' who are just 'sure' they 'know' what's going on and what to do.

When a surgeon who can diagnosis cancer has a family member get checked for cancer, he or she refers them to another medical professional as sometimes our eyes and feelings play tricks with our mind when it comes to the ones we care for.

How interesting. To me these are very different; in fact, I had first-hand experience with this. Years go, when the "thimerosal" hysteria (in vaxes) was in full swing, I got the lot numbers of every one of my son's vaxes from the doctor and looked each up. None were in lots that had been produced via thimerosal. I definitely didn't feel I was "sure" I knew what was going on without some sort of concrete confirmation. My reasoning was that even if there was any merit to the thimerosal theory (this was 10 years ago, BTW) - I was by no means sure there was, I was just doing my own research - I wouldn't know that it would apply to MY son unless thimerosal had been used in HIS specific vaxes which, as I ultimately discovered, they weren't.

Same with self-DX. It was never as simple as "I just 'know' what's going on" without intensive study and research.

I'd be willing to bet I'm not alone in this, I mean I've spoken to people IRL as well as online who were more current with peer-reviewed studies and updated DX criteria than some doctors I've spoken to.

As far as the "too close to home" thing, there are other phenomena that could come into play in the opposite direction from a doctor DXing a patient s/he has no ties to at all, such as pre-conceived bias. For example, one of my son's former doctors (our PCP) "didn't believe in" ADHD. Simply didn't believe it existed, period. The age of the doctor and his/her experiences seemed to come into play here: "in the old days," "misbehaving" children were given a swat and they shaped up toot sweet - no fancy and potentially dangerous CNS-stimulating medications necessary. This was a highly credentialed and much sought-out doctor and it's not the first time I've seen similar biases (in all different ways) and I'm sure it won't be the last. The doctor supported his assertions on the fact that there is no chemical test for ADHD nor could an MRI visibly confirm a brain difference.

EDIT (this entire paragraph added): I also had this experience of pre-conceptions and bias on a matter that DOES have a chemical confirmation test: hypothyroidism. Last year, my son suddenly (as in, over the space of about two months) became exhausted all the time, gained 15 lbs. in that very short time and was constantly constipated. I suspected hypothyroidism as I have it, my mother had it and from the other side of the family, my FIL has it. Our PCP also suspected it and ran a TSH. He came in just just barely under: 4.9 with 5 being a DX. So she referred us to an extremely credentialed doctor out of Children's Hospital Los Angeles (an endo). We went to the endo, and once again, oddly, he came in just under although the upper ceiling was lower than the previous test. The upper limit was 3.5 and my son came in 3.4. THIS doctor looked my fat body up and down, smirked and informed me that: 1. being overweight CAUSES hypo-T...not the other way around. 2. My son was "within range." I was flabbergasted and asked about our family history. The doctor once again glanced at my spare tire disgustedly and informed me that that doesn't mean it's genetic, it means the entire family has issues with not exercising adequately and with "not enough knowledge of nutrition." I left the office in tears, and my son continues to this day to be sluggish and sleep constantly. We had a follow-up test with our PCP and yet again (it is very weird how this keeps happening so exactly) he was exactly one percentage point below "medication" status and she once again told us she's unwilling to medicate for this issue as she's an endo, we'd have to go back to the endo...so we just struggle with it and that's that. The endo obviously had a pre-conceived bias that hypo-T is over DXd and that fat people give it to themselves and that we obviously sit around eating McDonald's all day. Biases do come into play, yes, including among doctors; some show them more so, as in this *ssh*le endo, and some less so, but every single person has biases and that includes physicians.

I've had fully qualified, credentialed doctors give completely different opinions on the same matter (not necessarily ASD). They must have their own reasons. Some will be psychological and some will involve bias. It just happens...and not infrequently.

So if we're going to rule out possible psychological reasoning (as in your example of the too-close-to-home thing), we're going to be ruling out a whole lot of other psychological factors too in order to "believe" nearly anyone's DX.

Hmmm. Interesting thought occurred to me. As we've stated, you can get a diagnosis if you want. You can always "play up" your symptoms in front of the doctor, or find a doctor that's known for being particularly liberal with the diagnosis, or just see enough to get what makes the most sense to you and stick with that.

At the same time, if you get a diagnosis and you're not sure it's right (or don't want it). Most of us could probably find someone with the credentials who's willing to say that the first person with the credentials was wrong.

So if a person has the diagnosis, and is playing the "Autistic-er than thou" card on those who don't. You have to wonder about their psychology. Maybe they got misdiagnosed, but like the self-appointed status it seems to give them as a "real autistic." Maybe they're the ones who are skimping on the leg work to establish whether or not they got the right diagnosis. If they're so enamored of their position, maybe they're the ones who played up the symptoms they read about online. They're already proving that the motive was there.

Or maybe this is a useless argument. Maybe the interventions, societal changes, and treatments we all want to happen will also help the people who are "just autisticish" as well. If that's the case, than does the distinction matter?

This is yet another story about how the media oversimplifies scientific findings to the point where it would have been better if they didn't write about it at all.

For reference: Remember when there was a big outcry about a research paper that claimed that non-celiac gluten intolerance did not exist? This was was repeated ad nauseam by a lot of media channels that had already earned a lot of money on building hysteria about gluten.

I talked to someone who's been celiac from childhood, and they tell me that they used to feel safe in restaurants, but now that every Tom, Dick and Harry is starting to feel qualified to decide who is *really* celiac, or worse, believes that nobody is in fact in danger from gluten, the trust is gone.

In the end some more serious media outlets reported the true findings of the report, which is that the people who thought they had non-celiac gluten intolerance in most cases probably have irritable bowel syndrome, which is caused by a type of sugar that can be found in many foods, including wheat. Voila.

The practical consequence of this is that people who thought they couldn't eat wheat, still can't eat wheat, but now both they and the celiacs have to contend with ridicule and people being sloppy with food safety.

People really can't handle cognitive dissonance.

The anti vaxers have a dozen or more peer reviewed studies saying what they they know is wrong. That is not the case with Autism. There are no studies on whether people who self diagnose as autistic actually are autistic that I know of, just several experts that claim they are usually right.

If anything, anti-self dxers come across like anti-vaxers, with their hysteria and their insistence that no one can possibly recognize anything about autism except for a specific subset of professionals.

IME, they don't really engage on a reasonable level - you're just plain wrong if you self-dxed, even if your self-dx was confirmed by a professional. It's almost like they think the word of a professional magically bestows autism upon you.

(underlining mine)

Yes, and also the assertion seems to tend to come along with massive pre-suppositions sight unseen and definitely with a bias: that the self-DXer is just basically reading a paragraph on WebMD about autism and self-DXing; or was shy in school and therefore has self-DXd...etc. (Strawmen are often brought to the fore when this subject comes up: "People decide they're autistic just because they were shy in school and couldn't get a date;" "people on Tumblr fake autism for attention;" "people say they're Aspies because it's the 'cool' DX;" "people pretend to be autistic to excuse bad behavior," etc., etc.

IMO that's a way of minimizing the validity of the accused's methods (sight unseen and with no supporting evidence that this happened with any given self-DXer), hence dismissing the validity out of hand. This includes when it's a sweeping generalization "not aimed at one person," in fact in that latter, it's more condemning as it not only sweeps aside the validity of a specific person's experiences, knowledge and research, it also sweeps away former self-DXers AND future ones.

It's not that it's insulting - insulting I can get over, I know I've done my homework, literally for more than a decade, on this subject and I know what doctors I've spoken to about this and how they've been the ones to suggest I am OTS - it's more that it's just illogical, at least IMO.

APOM, there is research which found that self-diagnosis has a high confirmation rate with formal diagnosis and I posted it somewhere on WP in 2014. However people don't seem to care about the evidence in these more contentious issues.

I've seen that exact thing happen many times. And their children, and their parents... Doctors very very often diagnose and treat themselves as well. I know one who won't let anyone else take his blood and insists on doing it himself. It's officially frowned upon, but in the same way as speeding. It only gets you in trouble when it starts to cause obvious problems.

I see the cancer/sunburn/bedbug argument come up all the time. If some really think that's analogous to autism, then I have to question their experience with autism, no matter what an "expert" told them.

They also don't have much of an understanding of how medicine works. Every diagnosis is provisional. Many are just a best guess and the treatment is often given only after an analysis of "will it hurt if the diagnosis turns out to be wrong?" Many treatments are trial and error. How often do you hear about people going through several different treatments for an illness before they find the one that actually matches what's wrong with them?

And parents: There are people out there who are much better experts on autism than you, but there is no one out there who's a better expert on your child.

The "purity/infallibility of clinical diagnosis" is not realistic. Clinicians themselves are taught to be wary of these black and white mindset, given the variables and cognitive biases which can confound the process, as in

http://www.msdmanuals.com/professional/ ... ion-making

Me too.

Particularly, for some reason, I've seen this in dentists. So far two of my son's dentists (the practice switched dentists several times during the years we were with them) have outright mentioned their children being treated by them. One time was when the dentist wanted to refer my son to an orthodontist and she said "this is who I sent my daughter to when I suspected she may need braces, of course I knew early since I'm her regular dentist" or something along those lines. I can't remember what specifically the second context/other doctor was, I just remember noting that the dentist treated his own child.

I also remember my dentist in school asking me whether I knew his daughter, she was my age, etc. and I did speak to the girl at one point and I said it must be so cool not to have to wait for a dentist appointment if she had a problem because her dad was right there, and she told me it wasn't all that great and her father wasn't any gentler with her than with his patients and also that it sucked to have your own dad as a dentist since she could never "get away with" not brushing her teeth for the full 3 minutes, etc. (Something along those lines, this isn't verbatim, it was a long time ago.)

And yes, I've definitely heard of doctors monitoring their own and their families' vitals, asking favors of fellow doctors to run bloods or whatever on family members based on their own suspicions of a certain condition and so on.