False Dx: Up to 70% of dx'd may not actually be autistic?

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MushroomPrincess
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12 Apr 2024, 11:19 am

https://www.researchgate.net/publicatio ... _of_Autism

Dr. David Rowland (Ph.D), speculates that 70% of diagnosed autistics, may not actually be autistic. It's true that psychology is an imperfect science, and a lot of people may be misdiagnosed with this-or-that disorder; it's always been my suspicion as well that the "autism epidemic" is actually an autism (mis)diagnosis epidemic. A lot of kids getting diagnosed with autism (which was traditionally thought to be a rather rare disorder), or "Asperger's" (a disorder that doesn't even exist in the first place) might actually have ADHD or some other disorder. What are your thoughts on this?

I don't want to get too political (this isn't P&P after all), but I suspect that the wave of new diagnoses in the 80's and 90's was brought on by market pressures, to feed a burgeoning "troubled teen industry". Incidentally, the autism "epidemic" seems to be localized entirely within these countries where it can be profited from.



IsabellaLinton
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12 Apr 2024, 11:31 am

I have both ASD Level 2, and ADHD-Combined. I can only speak for myself but I know the testing for each was very comprehensive, with PhD level specialists. My ASD assessment was over 12 hours and included margin of error, standard deviations, etc. My test results were sent to a second diagnostic centre in another country for double-blind verification. My ADHD assessment was two years later at an ADHD specialist neuropsychiatrist who is the national expert and lead of ADHD research in many countries. His testing was 20 hours. He omitted any tests which would have overlapped with the ASD tests, but most of them didn't. The testing for ADHD was very different than my testing for ASD, which makes sense considering they're two distinct developmental disorders.

I can't comment on what it's like for other people or whether their results are valid, but I know mine are. In the case of ASD I have every single descriptor listed, including all of the examples.


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Fenn
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12 Apr 2024, 12:11 pm

One wonders what kind of definition of “actually autistic” one might be using if “diagnosed as autistic” is not the definition.

Word salad. You can “prove” anything if you get to make-up your own definitions of words. This is an increasingly popular pass time.


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12 Apr 2024, 12:23 pm

I don't mind nor care.

Personally, whether or not I'm autistic, I am never an NT. Not with the way I feel, think, sense, perceive, not just developmentally or behaviorally.

And as far as I looked at other labels, popular and obscure, descriptions whether clinical or anecdotal; none of it matches the priority of issues, none of it explains everything about me.

The worst of me isn't even neurological or psychological. But it certainly affects these two areas.


As far as I'm concerned, autism is just a part of me that happened to be visible for everyone around me even long before I'm a teenager.

And I can be so easily misdiagnosed as any late diagnosed female autistic if it weren't for the choice of not masking.


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MushroomPrincess
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12 Apr 2024, 12:31 pm

Fenn wrote:
One wonders what kind of definition of “actually autistic” one might be using if “diagnosed as autistic” is not the definition.

Word salad. You can “prove” anything if you get to make-up your own definitions of words. This is an increasingly popular pass time.

I mean.... the "definition" of autism is something that's changed over time, so precisely what point are you trying to make here? The diagnostic criteria have been broadened to the point of near-meaninglessness. That's the whole issue right there.

"Diagnosed as autistic" can't be the definition of autistic, because in theory, you should have to be autistic to receive the diagnosis in the first place. If you declare somebody to be autistic because they have the diagnosis, then you're reasoning backwards from the conclusion. Which is fallacious as all hell.



MushroomPrincess
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12 Apr 2024, 12:35 pm

IsabellaLinton wrote:
I have both ASD Level 2, and ADHD-Combined. I can only speak for myself but I know the testing for each was very comprehensive, with PhD level specialists. My ASD assessment was over 12 hours and included margin of error, standard deviations, etc. My test results were sent to a second diagnostic centre in another country for double-blind verification. My ADHD assessment was two years later at an ADHD specialist neuropsychiatrist who is the national expert and lead of ADHD research in many countries. His testing was 20 hours. He omitted any tests which would have overlapped with the ASD tests, but most of them didn't. The testing for ADHD was very different than my testing for ASD, which makes sense considering they're two distinct developmental disorders.

I can't comment on what it's like for other people or whether their results are valid, but I know mine are. In the case of ASD I have every single descriptor listed, including all of the examples.

That's a very interesting take, and I appreciate your input. It sounds like your diagnosis came after a rather uncommon level of scientific rigour, and if all cases were studied this exhaustively I suspect it would be uncovered that the autism "epidemic" is largely smoke and mirrors. Congrats on being part of the 30%.



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12 Apr 2024, 1:40 pm

Personally I think that the increase in diagnosis frequency, is due to better screening methods and a broadening of who might be considered autistic, now, versus say, a couple of decades ago and beyond.

I would say when incidences of clinical diagnosis were a lot lower, the threshold for qualifying as being autistic would be a lot higher, i.e, only the more severe cases would be labelled.

But even for people with less severe cases, the disorder can still be disabling in an NT society and so I think things have gotten better, not worse, in terms of diagnostic frequency.



IsabellaLinton
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12 Apr 2024, 2:49 pm

MushroomPrincess wrote:
IsabellaLinton wrote:
I have both ASD Level 2, and ADHD-Combined. I can only speak for myself but I know the testing for each was very comprehensive, with PhD level specialists. My ASD assessment was over 12 hours and included margin of error, standard deviations, etc. My test results were sent to a second diagnostic centre in another country for double-blind verification. My ADHD assessment was two years later at an ADHD specialist neuropsychiatrist who is the national expert and lead of ADHD research in many countries. His testing was 20 hours. He omitted any tests which would have overlapped with the ASD tests, but most of them didn't. The testing for ADHD was very different than my testing for ASD, which makes sense considering they're two distinct developmental disorders.

I can't comment on what it's like for other people or whether their results are valid, but I know mine are. In the case of ASD I have every single descriptor listed, including all of the examples.

That's a very interesting take, and I appreciate your input. It sounds like your diagnosis came after a rather uncommon level of scientific rigour, and if all cases were studied this exhaustively I suspect it would be uncovered that the autism "epidemic" is largely smoke and mirrors. Congrats on being part of the 30%.



My daughter's ASD eval was at a different place and it was much less formal. She was diagnosed as HFA. Her report reads like a fill-in-the-blank form letter and doesn't show objective testing data, but I agree with the diagnosis.

Her assessor is also autistic so I think she knew what to look for despite the methods being less formal.

She later did ADHD testing at the place where I did mine. It involved 20 hours of clinical assessments, and she was also dx with ADHD-Combined. They confirmed her ASD diagnosis as valid, as well.


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Fenn
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12 Apr 2024, 2:49 pm

MushroomPrincess wrote:
Fenn wrote:
One wonders what kind of definition of “actually autistic” one might be using if “diagnosed as autistic” is not the definition.

Word salad. You can “prove” anything if you get to make-up your own definitions of words. This is an increasingly popular pass time.

I mean.... the "definition" of autism is something that's changed over time, so precisely what point are you trying to make here? The diagnostic criteria have been broadened to the point of near-meaninglessness. That's the whole issue right there.

"Diagnosed as autistic" can't be the definition of autistic, because in theory, you should have to be autistic to receive the diagnosis in the first place. If you declare somebody to be autistic because they have the diagnosis, then you're reasoning backwards from the conclusion. Which is fallacious as all hell.


I notice you don’t actually have a definition.


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redallen32
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12 Apr 2024, 3:31 pm

I think one reason why we are seeing more diagnoses these days is because people are starting to realize that it's an actual thing that people have. Sort of like when the world realized that left-handedness was an actual thing, there was a massive influx of diagnoses for people who were left-handed.

I know for me, and a lot of people, getting an official diagnosis is not easy. It was a months long process and the only reason I think they finally officially diagnosed me was because my therapist at the time was fighting for me (she thought I was on the spectrum within just a couple of sessions with her)



JamesW
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12 Apr 2024, 3:34 pm

Pasted directly from: https://www.reddit.com/r/autism/comments/16bavks/autism_fake_research_warning_please_spread/

Autism fake research warning (please spread)

Tl;dr: I found a fake autism researcher with a bunch of followers that claims he has solved autism. But everything is fake and shouldn’t be trusted. So I wanted to go through with our community how to spot fake research, (especially if your friends and family have trouble spotting a fake source and end up saying something along the lines of “you can’t be autistic” and use something like this as evidence). Complete with examples and a list of tips at the bottom. (But also this dude just sucks and I hate him so please share so people know he sucks, and can reference this guide if needed).

Main sources: a lot of digging; reading the papers he cites; being an autistic scientist, grad student, and writer that spends way too much time reading academic papers; information from past classes; a lot of googling; and science common knowledge.

Posting because there is a dude spreading things that are very, very harmful to the our community (and is also just terrible, awful science that makes me really mad).

There is a person claiming to go by the name of David Rowland, of the Rowland Institute of Autism in Canada. He showed up in my LinkedIn Profile (Image 1) in a group for autism research that I had been looking at. At first glance, his profile comes across as legitimate, but it gets sketchier as you go.

He claims to make groundbreaking discoveries through his research at the Rowland Institute for Autism. The Rowland Institute (which does seem to be legally registered as a corporate enterprise in Canada), has no other information about it besides a link to an incomplete blog. This “groundbreaking research” also seems to be available on Amazon through a self-published service.

His “research” seems to be focused on the idea that autism is completely because of a neurological state of hyper focus.

While hyper focus is a trait we all know, it is more commonly associated with the differences between a mono tropic brain and a poly tropic brain. At its simplest, having a mono tropic brain means it’s hard to switch tasks because we are only able to be aware of one thing at a time. It’s also commonly pointed to as a possible reason for increased sensory issues (too many stimuli when we can only focus on one thing, while neurotypicals generally have a wider focus and awareness). (Source: I’m taking a class on autism and mental health and they talk about this a lot)

In addition to his images looking like they came from google, and his summaries mimicking a homework assignment, his apparent “research” is filled with many extreme claims that are filled with inaccuracies and biases.

Here are some wild claims that he has made in these so-called papers.

He states that there has been an epidemic of false diagnoses.

Why this is wrong: The article that he sights for this point does not have to do with false diagnoses, and never even mentions this.

The facts: it points out that there has been a rise in diagnoses and attempts to assess why that may have happened (no clear reason is deemed statistically significant, although it relates it back to expanding the understanding of autism, having an inclusive population, and bias in older studies and definitions). It also states the limitations of the study, of which there are several.

2) He says that the symptom-survey approach has been a step-backward from the 1960s clinical phenotype diagnosing.

Why this is wrong: A phenotype is an outward expression of a gene. This can be behavioral, physiological, neurological, etc. A set of symptoms, if they are due to a genetic expression of a gene, are inherently phenotypes.

The facts: He is basically saying that clinicians should be able to observe and give a diagnosis, and that family history should be important. Since there are many genetic factors that could potentially go into autism, and this is an ongoing field of study (go look at the autistic bees :)) it seems he has misunderstood the field entirely.

3) He says that Autism is 100 percent.

Why this is wrong: Aside from the obvious, it is extremely risky to present a claim like that. Science is statistical, and claiming anything to be 100% is inherently a false statement. But this is especially true because if it were a matter of either/or, a legitimate researcher would not state it as a percentage to begin with.

The facts: any paper that claims to have found the ultimate answer to a problem is not using any method that could be deemed as legitimate science. He has no statistical analysis, and his study sample seems to be limited to autistic people he is related to or knows. We have no idea how he came up with any of this even with his description.

Now, aside from these wild claims, he mostly cites himself in the summaries (bad bad bad unless you’re literally the only person studying a type of bug and I am not a bug on the outside). And only one single paper cites him as a source, which they only claim as a reference to the neurodiversity movement.

It also seems that his institute is a knockoff of the one at Harvard, except this one turns out to be an incomplete blog. He does say things that will get your attention and make you start to agree, like how ABA therapy is bad but please remember that even these sources are inaccurately cited and should not be read as accurate.

Finally, science is peer-reviewed. When you go to the website that supposedly published this research, it is a fake version of a legitimate website for the International Online Medical Council (see .com and not .org). It’s easy to tell because the real one has a huge navigation system, tons of articles, and a page that says how the review system works.

His paper, if you compare it to any other real academic work, also does not have the correct organization or formatting, a short list of references, and the ISNN (a number that is specific to an article) is incomplete, and references the wrong journal. Yet somehow it also ended up on Research Gate.

It is important that we all be aware of the fake news that exists, because even though you may read this and see that obviously that’s not how Autism works, this guy has a following, and it influences the people who don’t believe our experiences are valid. This particular person claims to be autistic, and while that’s something that I cannot know to be fact or fiction, it can be used to persuade people that he knows something.

He also has a listing on Quackwatch that explains that any credential he claims to have is not to be trusted. I guess he used to do this for nutrition.

Here are some tips for helping yourself and others sus out fake research papers:

Always check the primary source. If info about a new science thing comes out, go to google scholar and type in the researcher’s name or research. This is especially true if there seems to be a clear bias or inaccurate information.

If there is a primary source:

2) look for the number of people that have cited it… the more the merrier. 3) check the paper for any math and look for a 95% confidence interval or bigger (0.95 CI) and a number that looks like this this: <0.05 (or smaller). 4) Make sure the citations also go to legitimate articles

If there isn’t:

6) look up the scientist’s profile. Every research scientist will have a profile or lab page as part of their institute. Not all of them end up on quack watch, which is why I didn’t say that first.

If things look suspicious:

7) check out the website of the research journal and google the name to see if anything else pops up. 8) see if any personal websites exist that seem suspicious.

And if you don’t trust it: 10) ignore it and find a better source on the same topic.

Speaking of which, here is a recent and reputable paper about where the world is at with autism research:

https://onlinelibrary.wiley.com/doi/full/10.1002/aur.2696

Stay safe, and please complain about this stuff if you see it so we can continue to be acknowledged as real people.



Fenn
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12 Apr 2024, 3:51 pm

“There is currently no response biomarker with sufficient evidence to inform ASD clinical trials. This review highlights methodological imperatives for ASD biomarker research necessary to make definitive progress: consistent experimental design, correction for multiple comparisons, formal replication, sharing of sample-level data, and preregistration of study designs. Systematic “big data” analyses of multiple potential biomarkers could accelerate discovery.”

Source:

2022: In Search of Biomarkers to Guide Interventions in Autism Spectrum Disorder: A Systematic Review

https://ajp.psychiatryonline.org/doi/10 ... p.21100992


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ChicagoLiz
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12 Apr 2024, 5:34 pm

I don't think that anyone has yet mentioned that among the larger numbers of newly-diagnosed includes women and/or people of color, who were mostly ignored before. White boys have been professionally diagnosed at a disproportionate level until recently. As the joke goes: when are boys usually diagnosed? Between toddlerhood and the first few years of schooling. When are girls usually diagnosed? When their sons are. And children of color are usually assumed to be 'bad kids' instead of needing diagnosis and support. Well, that's changing, and that's a good thing.


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12 Apr 2024, 6:25 pm

Are insurance companies willing to pay for a diagnosis.
Back when I joined this forum a formal diagnosis would have cost $1500, not covered by insurance.

That is now $2149 factoring inflation.

It was unlikely that I'd see any benefit beside knowing.
The possible downside an be seen with politicians exploiting transgenders in for political gain.

Texas Judge Temporarily Blocks Paxton’s Demand for Transgender Minors’ Records



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13 Apr 2024, 9:41 am

MushroomPrincess wrote:

I don't want to get too political (this isn't P&P after all), but I suspect that the wave of new diagnoses in the 80's and 90's was brought on by market pressures, to feed a burgeoning "troubled teen industry". Incidentally, the autism "epidemic" seems to be localized entirely within these countries where it can be profited from.

JamesW has already posted a nice rebuttal of the "science".

I don't buy into your conspiracy theory for a second, either. Autism rates have been going up around the world, including in countries where healthcare is provided for by the government. I was diagnosed by an NHS child psychiatrist - this diagnosis placed a burden upon the NHS.

Furthermore, while it's true that Aspergers is no longer a recognised diagnosis, that isn't because it "doesn't exist". The two conditions have simply been merged. Yes, it's fair to say that changing diagnostic practices are responsible for the increase in diagnoses, but that doesn't mean the diagnostic processes in the past were therefore right and current ones are wrong - we're just getting better at identifying autism now.



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13 Apr 2024, 12:12 pm

ChicagoLiz wrote:
And children of color are usually assumed to be 'bad kids' instead of needing diagnosis and support. Well, that's changing

Haha, is it though? :?