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

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Fenn
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13 Apr 2024, 1:20 pm

If “has autism” doesn’t mean “has a diagnosis of autism” what, exactly does it mean? Can anyone answer that?


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ChicagoLiz
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13 Apr 2024, 4:33 pm

Barchan wrote:
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? :?


Yeah, I meant with regard to autism diagnosis specifically, but your point is sadly true.


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BillyTree
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14 Apr 2024, 4:31 am

Fenn wrote:
If “has autism” doesn’t mean “has a diagnosis of autism” what, exactly does it mean? Can anyone answer that?


It means that you don't turn autistic when you get your diagnosis. You can be autistic with or without a diagnosis. You can't turn NT:s into autistics by giving them diagnosisis.


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14 Apr 2024, 5:05 am

It depends on who's observing me I think and my behaviour at that specific time. I have no doubt that the psychiatrist who diagnosed me saw Asperger's syndrome but since then no one else has. He was a leader in his field at the time btw.

https://en.wikipedia.org/wiki/Digby_Tantam

With me I think I just sit on the borderline with it so I'd say these days my diagnosis would come out as either inconclusive (if that is a thing) or just not autistic

My daughter however is autistic and it's hard not to see it


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blitzkrieg
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14 Apr 2024, 5:35 am

An autism diagnosis is subjective, but that doesn't mean that it is invalid for the sizeable amount of people that seemingly are being labelled as 'may not be autistic' by this unqualified thread.

Diagnostic procedures are made by multidisciplinary teams in the current day (I can't speak for diagnostic procedures in times past, but nowadays you have PhD level people/qualified doctors at least in the mix who are autism specialists) and have a dedicated role which you would imagine would include the task of not making erroneous diagnoses'.

I don't really see how there could be up to 70% of erroneous judgements by these people, it seems like a ridiculous assertion to make.



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14 Apr 2024, 6:06 am

Would that mean that 70% of wp diagnosed people are false positive

I'll tell you now that I would without a doubt argue against that


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blitzkrieg
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14 Apr 2024, 6:10 am

babybird wrote:
Would that mean that 70% of wp diagnosed people are false positive

I'll tell you now that I would without a doubt argue against that


I think the thread title is arguing that 70% of all diagnosed autistic folk are possibly not autistic, so I guess a sample of people from WP would also be a part of that group - providing that they had/have an official diagnosis, as opposed to a self diagnosis?

I would argue against that also.



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14 Apr 2024, 6:11 am

Yeah. Only based on my observation that no one gets my jokes


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blitzkrieg
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14 Apr 2024, 6:12 am

babybird wrote:
Yeah. Only based on my observation that no one gets my jokes


:lol:

Your jokes are hilarious to be fair.



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14 Apr 2024, 7:56 am

:lol:

Thanks man


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blitzkrieg
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14 Apr 2024, 8:34 am

babybird wrote:
:lol:

Thanks man


:)



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14 Apr 2024, 9:31 am

Fenn wrote:
If “has autism” doesn’t mean “has a diagnosis of autism” what, exactly does it mean? Can anyone answer that?

A communication disorder stemming from a malformed or deficient frontal lobe, usually characterized by clinically significant delay in language development and difficulty with non-verbal cues.

I thought everyone on here knew what autism was; it's an autism website and this is the autism board. If there was ever any doubt that this condition is overdiagnosed, we needn't look much farther than the legions of confused gen-Xers who can't even give a meaningful definition for the disorder which they swear they have.



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14 Apr 2024, 10:39 am

I didn't know


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14 Apr 2024, 11:59 am

It's a good question, how would anybody discover the degree and direction of misdiagnosis when the diagnosis is the standard by which the condition is assessed?

Last time I looked, I got the impression that getting an assessment in the first place could be hard (expensive in the US, rationed or expensive in the UK), and from the very few cases I've seen, there may have been a tendency to underdiagnose. But that was a few years ago, with a small number of observations and obviously with the problem of having no standard by which to judge the accuracy of the diagnoses. Though obviously, failing to assess people who wish to be assessed risks underdiagnosis not overdiagnosis.

In as far as ASD is defined by stated, objectively-measurable traits (diagnostic criteria), maybe there would be a way to scrutinise how diligently diagnoses have been done. I've certainly seen mistakes made. One diagnostician tested somebody for a range of conditions, initially expressing the strong opinion that they had ASD, but the final DX said it wasn't that. On perusal of the report, there was an anomaly in the reported times taken for assessing the different conditions, such that it appears no time was spent on assessing ASD, though the diagnostician had said the condition had been carefully looked into. Scores for ASD were mysteriously absent from the report. So a second diagnostician was engaged, who diagnosed the client's condition as rather severe ASD. At the very least, somebody must have been wrong, and having knowing the client for a long time, I'm virtually certain she has ASD and that the first diagnostician was either mistaken or corrupt - probably the latter.

Anyway, anectodal evidence like that doesn't count for much, but as it's my experience, it does rather make me raise my eyebrows when I read that somebody thinks there's a huge overdiagnosis problem.



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14 Apr 2024, 12:18 pm

MushroomPrincess wrote:
A communication disorder stemming from a malformed or deficient frontal lobe, usually characterized by clinically significant delay in language development and difficulty with non-verbal cues.

I thought everyone on here knew what autism was; it's an autism website and this is the autism board. If there was ever any doubt that this condition is overdiagnosed, we needn't look much farther than the legions of confused gen-Xers who can't even give a meaningful definition for the disorder which they swear they have.



Not all autism is related to frontal lobe conditions. Defects of the cerebellum are also involved, as are many genetic disorders. Exposure to heavy metals and other toxins in utero can cause ASD as well.




Image



Cerebellar involvement:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8998980/


From the article -

Image



Incidentally, I do have cerebellar defects, temporal lobe defects, genetic mutations, and exposure to heavy metal toxins.
Not all autistic people will, though.
Some people inherit it from a parent or ancestor with no neurobiological differences.

Why do you say "legions of Gen X'ers" in particular are confused?


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Fenn
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14 Apr 2024, 1:31 pm

MushroomPrincess wrote:
A communication disorder stemming from a malformed or deficient frontal lobe, usually characterized by clinically significant delay in language development and difficulty with non-verbal cues.


If, for the sake of argument, I except your definition exactly “as is” then the statement “some people, n percent, diagnosed as autistic do not “have” autism makes some sense. The problem? The DSM doesn’t define it that way. Neither does the ICD. Further frontal lobe isn’t always identified in MRI or FMRI or EEG studies of people diagnosed by DSM criteria. So you see the problem with the original assertion. As the meta-analysis I cited in a previous post stated: there are NO biomarkers with enough studies and enough statistical evidence associated with them to act as a replacement for the DSM criteria. And the DSM criteria are about observable behavior, and quantifiable (by use of a rubric) included in the DSM5.
Further non-verbal LD is a separate diagnosis.

No-one I have ever met here on the forum has said “i has this brain scan and they found autism, so now I have a diagnosis”.

Because the definition you are using isn’t the one used.

Quote:
I thought everyone on here knew what autism was


I have discovered that many people here have a variety of ideas of what Autism is. It is a matter of much discussion.

For my oldest son, his diagnosis was by DSM5 criteria. The decision was not objective, but subjective, the criteria were applied by a PhD who was also certified in school psychology. She used a number of statistical instruments to support her subjective opinion as well as informational interviews with teachers and parents and he, himself. But in the end it was a DSM5 based diagnosis. I specifically went over the DSM5 (newly published then) with her and specifically asked her to use the new quantitative measures.
No brain scan was involved.

My diagnosis was several years later. Different PhD. She also used statistical instruments and interviews with me and my wife. My dad was recovering from a stroke and did not participate. My mom had died 10 years earlier. Parent interviews were not used. A specific instrument (my subjective answer to a list of questions each on a scale of 1 to 5) to measure my level of masking was used, which had not been used with my son. The final decision was based on expert subjective opinion and DSM5 criteria.
No brain scan was used.

Both these diagnoses are evidence of Autism. And that is the legal definition of Autism in the USA. It impacted the government payed support my son got in high school. It was the reason a particular consulting company that only worked worth Autistic talent agreed to take me on. It IS the definition used in many cases.


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Last edited by Fenn on 14 Apr 2024, 1:35 pm, edited 1 time in total.